Lyme Disease – Lifey

Here’s a free collection of resources about Lyme Disease- Lyme Disease blogs, videos, support groups, first-hand experiences and advice from people who have Lyme, etc.

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Lyme Disease Blogs

Here’s a list of Lyme Disease blogs- blogs written by people with Lyme Disease, or about Lyme Disease.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Daniel Cameron MD	danielcameronmd.com	2017
Touched By Lyme	lymedisease.org/..touched-by-lyme	2017
Lady Of Lyme	ladyoflyme.com	2017
Bay Area Lyme Foundation	bayarealyme.org	2017
The Lyme Life	lymelife.bangordailynews.com	2017
Jenna’s Lyme Blog	jennaslymeblog.com	2017
Will There Be Cake?	willtherebecake.org	2017
LymeMD	lymemd.blogspot.com	2017
Global Lyme Alliance	globallymealliance.org	2017
Uprooting Lyme	uprootinglyme.com	2017
Lyme Disease Association	lymediseaseassociation.org	2017
The Tick Slayer	thetickslayer.com	2017
Better Health Guy	betterhealthguy.com	2017
My Lyme Chek	mylymechek.com	2017

Lyme Disease Support Groups

Lyme Disease Support Groups On Facebook

Other Lyme Disease Support Groups And Forums

Daily Strength Chronic Fatigue Syndrome Support Group (896 members, 7,002 posts)

Lyme Disease Survey

We’re surveying people about their experiences with Lyme Disease. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully, it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with Lyme Disease**

Lyme Disease Symptoms

What symptoms have you experienced?

Swollen leg, tired, dizziness, and weakness. (Anonymous)
Sensitivity to loud noises, nerve pain in forearms, chronic headaches, brain fog, foot pain along with red discoloration on bottom of feet. (Gracie, 15 years old)
Joint pain, depression, anxiety, lack of concentration, memory problems, insomnia, numbness. (Nora, 22 years old)
Intense abdominal pain, memory loss, malaise, extreme fatigue, migraines, hopelessness, anger and extreme rage, depression, brain issues, nausea, suicidal thoughts, etc. (Korli, 26 years old)
Exhaustion, full body aches, and pain, migraine headaches, head pain (stabbing, throbbing, aching, and low-grade fevers, they normally run 97.2, fevers 98.6-100.1). Blurred vision, eye pain, dizziness, feeling lightheaded, motion sickness, ear popping, clogged/ringing, sensitivity to light, sound, smell, noise. Teeth- decaying/cavities, jaw pain & TMJ, neck stiffness and pain, shoulder tension, stiffness and pain, shoulder weakness (right shoulder semi-dislocation in October 2016). Breathing difficulty (got inhaler September 2016), coughing, dry mouth (especially at night/during sleep), arm weakness, hand cramping and stiffness. Hands- difficulty bending and grasping. Stomach pain, cramping, decrease in hormones, hot flashes, night sweats, severe nausea, low back stiffness and pain. Sacroiliac joint pain, hip pain, bloating, muscle deterioration, loss of strength and weakness. Sharp joint pain, stiffness, aching, knee instability and pain, swollen knees (especially after walking). Loss of some balance, calf cramping, ankle pain, weakness, Raynaud’s Disease, Fibromyalgia, Chronic Fatigue Syndrome, and confusion. Sometimes difficulty speaking, carrying on a conversation. Difficulty concentrating, weight fluctuation, cysts, difficulty walking (use a cane often). (Stephanie, 26 years old)
Short-term memory loss, exhaustion, headache, body aches, numbness, tingling, brain fog, confusion, fever, chills, night sweats, heart palpitations. (Rachel M., 27 years old)
Fatigue and full body pain. Muscle twitching, cramps, brain fog, migraines, headaches, neck pain, back pain, trigger points, eye twitching, moving pain, electric feeling, numb feet and numb hands (Kristin, 27 years old)
Neurological: depersonalization, brain fog, severe anxiety, panic, depression, confusion, poor short-term memory, stiff neck, muscle weakness all over, dizziness, phlegm in throat, clogged ears, inflamed sinuses, chronic fatigue, insomnia, toxic feeling, feeling drugged, flu-like, sore throat. (Brittany, 29 years old)
Purpuric rash, food intolerance, joint pain. (Kitsune, 30 years old)
Fatigue, joint pain, muscle pain, muscle spasms, irregular heart rate, depression, jaw pain, neck and shoulder pain, eating problems, digestive problems, headaches, nerve pain, gait problems. (Michelle, 30 years old)
Joint pain, fibromyalgia, muscle spasms, brain fog, Bell’s palsy, depression, anxiety, nerve pain and ADD. (Sabrina, 30 years old)
Dizziness, lightheaded, spaced out feeling, can’t focus, confusion, memory problems, extreme fatigue, sleep problems… (Tiffany, 32 years old)
Pain, pain, pain(head, jaw, ears, all joints, eyes, feet, everywhere), seizures, severe orthostatic hypotension, brain fog(severe). (Danielle, 34 years old)
Migraines, head, neck, shoulder and back pain, confusion, short term memory loss, shortness of breath, tachycardia, palpitations, reoccurring strep throat, sinus and ear infections, random rashes, nausea, diarrhea, dizziness, foot pain, knee pain, Bartonella scratches, anxiety, depression, and rage. (Carly, 34 years old)
Joint Pain, fatigue, fever, body aches. (Lorraine, 34 years old)
Almost all the hundreds of Lyme & Bartonella ones. (Rachael, 34 years old)
Rashes, cognitive impairment, nausea, vomiting, weight loss, memory loss, cellulitis, mesa, migraines, joint and muscle pain and spasms, and extremely fatigued. (Shannon, 34 years old)
Large bull’s eye rash, nausea, dizziness, exhaustion, fatigue, motion sickness, ‘flu-like’ symptoms. (Danielle, 35 years old)
Anger, anxiety, fatigue, joint pain, muscle tenderness, muscle spasms, brain fog, blurry vision, difficulty walking, weight gain, horrible migraines and memory loss. (Rebekah, 35 years old)
Extreme fatigue, chronic all over pain, low-grade fevers, muscle twitches & spasms, brain fog, sensitivity to light and sound, anxiety, depression, insomnia, intolerance to hot and cold temperatures, excessive sweating, degenerative disc disease, arthritis, heart palpitations. (Sarah, 37 years old)
Neurological, hot flushes, heat sensitivity, SIBO/ Candida (multiple times), sensitivity to sound, massive weight gain (inflammation), IC. (Sorana, 37 years old)
Chronic nerve pain, arthritis, chronic fatigue, intermittent fevers, short and long-term memory loss, nominal aphasia, facial blindness, tinnitus, gastroparesis, anxiety, and depression. (Stacey, 37 years old)
Practically all the symptoms on Dr. Buroscanos list. It got very hard when I couldn’t read. (Veronica, 38 years old)
Heart palpitations, fever, extreme fatigue, tremors, dizziness, brain fog, lowered body temperature and extreme cold spells, weakness, rash, unclear vision. (Jamie, 39 years old)
Depression, fatigue and anger (James, 39 years old)
Joint pain, dizziness, shortness of breath, pins, and needles tingling, GI issues, food allergies/intolerances, neuropathy, mental function decline finding words, extreme fatigue. (Serena, 39 years)
I think the list of not experienced would be shorter. Major symptoms are daily headaches and fevers, vertigo, unbearable fatigue, widespread pain and joint swelling and brain fog. (Leah, 39 years old)
Joint pain, muscle aches, tingling, muscle twitching, cognitive. (Jen, 40 years old)
Pain, confusion, rage, panic attacks, vertigo, blackouts, dizziness, seizures, cognitive problems, fainting, paralysis, getting lost, spasms, blindness, and many others. (James, 41 years old)
Vertigo, joint pain, night sweats, headaches, severe fatigue, weight loss, sleep issues, dietary restrictions, chills and other flu-like symptoms including throwing up, bladder issues, gastrointestinal issues, brain fog, memory issues, problems putting into words what I wanted to say, neuro symptoms. (Kelly, 43 years old)
Dizzy, off balance, poor memory, neuropathy, serious GI pain, autoimmune dx’s, severe itching head to toe, tinnitus, burning sensations on the face, the onset of a lot of food allergies, bad depression/anxiety, interstitial cystitis, more to name. (Kristen, 44 years old)
Inflammation, joint pain, muscle pain, brain fog, confusion, nausea, dizziness, severe fatigue, and flu-like symptoms. (Marianne, 44 years old)
Insomnia, joint pain, fatigue, short term memory loss, loss of teeth over time, severe depression, chronic anxiety, and aging faster (Laura, 45 years old)
Chronic osteoarthritis, degenerative joint disease, fibromyalgia, and atrial valve leak. (Michelle, 45 years old)
Joint and muscle pain. (Chris, 45 years old)
Fatigue, joint pain, swelling, weight gain, sickness, and legs giving out. (Leslie, 45 years old)
A headache, fatigue, body pain, endocrine system imbalances, EBV, and brain fog. (Mary, 46 years old)
Too many to list. (Sara P., 46 years old)
Neurological and cardiac as well as short term memory loss and permanent nerve damage (Marybeth, 47 years old)
Pain, extreme fatigue, neuropathy in extremeties, appetite issues, joint pain, headaches, reduced hearing, vision problems, depression, anxiety, sleep issues, aching bones, nausea, cognitive issues, dementia like symptoms, depersonalization, cant recall words, using wrong words, nausea, gets lost on very familiar routes, gets stressed out easy, memory issues, skin sores, dental issues, showering/bathing issues, random fevers, soles of my feet burn and ache, shins burn, hands burn and ache, lower back pain, cant stand up/sit up for very long, hands go numb drop things, tongue numbness, painful lumps on legs, no feeling in feet and legs, severe brain fog, ringing in ears, dizzness. (Cheryl L, 48 years old)
Too many to count. (Kim, 48 years old)
Gastrointestinal, neurological, cognitive, just too many to write but a few of the consistent symptoms include chronic fatigue, migraines, blurry vision, sensitivity to light, tingling & loss of feeling in extremities, inability to retrieve words from the brain schema, loss of memory (especially short-term memory), rashes all over, severe stomach pain caused mostly by bloating, severe joint & muscle pain, vertebrae & joints in my spine are falling apart (lots of diagnoses including degenerative facet hypertrophy, osteoporosis, osteoarthritis, herniated disc in lumbar region and 4 bulging discs in my neck & 4 bulging discs in my lumbar spine, spinal stenosis, lesions on my cord at T9-10), and inability to judge depth. My depth perception has been greatly affected. (Melissa, 48 years old)
Chronic fatigue, fibromyalgia, TMJ syndrome, chronic sore throat, chronic insomnia, dizziness, nausea, hypothyroidism, adrenal dysfunction, sarcopenia, chronic headaches, severe anxiety, temperature dysregulation, chronic low body temperature, IBS, chronic hives, sensitivity to chemicals, overactive bladder syndrome. (Jill, 49 years old)
Severe insomnia with twitching, night sweats, extreme air hunger-heart and lungs tested normal though, low ferritin, racing heart at 3am in the morning, forgetfulness, difficulty remembering anything. (Raquel, 49 years old)
Joint pain, memory loss and fatigue. (Leslie, 50 years old)
Headaches, stiff legs, muscle spasms in legs and arms. Joint pain, memory issues, inability to say/recall a specific word/name. All over body weakness. (Cynthia, 50 years old)
Extreme pain and fatigue, blurred vision, food allergies, migraines, digestive issues, I could go on forever. (Shari, 50 years old)
Parasites (Babesia) = Itching and scratching, creepy, crawly tingling under the skin. Lack of appetite for drinking, lethargy and tiredness. (Viki, 50 years old)
Fatigue, brain fog, inflammation in brain, nerve buzz pain under feet, joint pain, inflammation in knees, chest pain and headache. (Christina, 50 years old)
Joint pain/deterioration, brain fog, headaches, flu-like symptoms, dizziness, muscle weakness, hair loss, Lyme rage, depression. (Christi, 51 years old)
Muscle/joint pain, brain fog, extreme exhaustion, cognitive issues, depression/anxiety, teeth/gum issues, massive tingling all over, can’t concentrate or focus on things especially reading, lose thoughts/words, joints crack, rage out of no where, nausea, dizziness, bad motion sickness, can’t lose weight, intolerance to cold and extreme heat, headaches, no joy in life, have been suicidal at times, arthritis in my joints, eye floaters, vision blurs, thyroid issues, severe candida, had to have a hysterectomy due to periods getting more painful and heavy bleeding instead of winding down due to my age, almost constant ringing in my ears, stumble when walking, memory issues, hypoglycemia. (Teri, 52 years old)
Fatigue, migrating body pain, stiffness, migraines, ringing ears, brain fog, memory loss, difficulty sleeping. (Susan, 53 years old)
Numbness in fingers, twitching, brain fog, joint pain, burning sensation, heaviness in arms, sore throat, stiff neck, optic neuritis, vertigo, fatigue. (Marcia, 53 years old)
Fibromyalgia -chronic muscle pain, brain fog, joint pain. (Michelle, 53 years old)
What haven’t I experienced? I couldn’t walk or talk for years. Heart failure, Bell’s palsy, being told from my brain scan, that I had T2 hyper lesions in my deep white matter and numerous prefrontal lobe lesions, was normal. Right. When amnesia set in while driving by myself, chronic tick-borne infection vs ms vs porphyria was addressed. 72 hours into antibiotics: my life has not been the same 4 yrs later. Spinal tap done 3 times without anesthesia because staff did not want to wait for Marcaine (lidocaine doesn’t work for me) to take effect. On the third try, the table was placed at 90 degree angle, staff held me up as I was hanging by my hands from the table screaming, while the spinal tapper was squeezing my skin like a blemish to get cerebral spinal fluid out. Then the staff let my precious cerebral spinal tap fluid sit for 4 hours. Same staff put my PICC line in 2 weeks later and had to do it twice as my arteries spasmed because lidocaine didn’t work for me. I was told Marcaine took too long. Almost died from 104 fever from infected PICC line, renal stones from cefuroxime, kidney failure (2 surgeries), liver failure, Gadolinium toxic now from MRI scans, fire pain, walls of fatigue, weight gain, and have lost most of my friends. Neuro symptoms – all of them. I don’t feel like explaining them. (Bridgette, 54 years old)
Chronic joint pain, neuropathy, fevers, nausea, vomiting, shortness of breath, air hunger, confusion, cognitive impairment, fatigue, and unsteady gait. (Kim, 54 years old)
Advancing arthritis and lots of joint problems, GI problems, palpitations, skin rashes, brain fog, fatigue, etc. (Julie, 55 years old)
Heart palpation, aches and pains in my legs, swollen joints, headaches, tiredness, flu like symptoms, and memory loss. (Dawn, 55 years old)
Chronic daily migraine for 22 years, burning and electricity type shooting pain (Kimberly, 55 years old)
Joint pain, brain fog, blurry vision, hair loss, tinnitus, to name the worse. (Lori, 55 years old)
Fatigue, exhaustion, hearing sensitivity and Tinnitus, light sensitivity, swollen Lymphatic system, Neuroborelliosis, memory loss, brain fog, cold and hot sweats, low grade temperature, kidney infections and stones, reoccurring bladder infections, gastric issues, with the alpha gal allergies to beef, pork, lamb and dairy, Herxing/Die off’s, muscle spasms, jaw pain/spasms, joint and body pain, loss of strength, depression/anxiety, weight gain…etc. (Marti, 55 years old)
Fatigue, muscle weakness, ringing ears, heart palpitations, neuralgia, aching foot, vibrations in body, dizziness. (Ann, 56 years old)
Muscle/joint/nerve pain, cognitive impairment, movement disorder, radiculopathy, headaches, insomnia. (Jill, 56 years old)
Fatigue, brain fog, memory issues, joint pain both shoulders hurt all the time, numbness, feet hurt, pin sensations, and creepy crawly sensations, (Robin, 56 years old)
Chronic pain, chronic fatigue, insomnia, anxiety, severe foot and joint pain, depression. (Steve, 56 years old)
+ in 14′ – W. blot, severe flu- vomit/diarrhea at the same time, severe headache, neck pains and traveling pains at every past injury, comes and goes (at onset), following year sepsis, almost lost my right foot. Severe pains come and go in previous injury sites, my vision is blurry at times, lack of coordination, headache (severe at onset), lung infections and stomach valve leakage, eustation tube issues, sinus infection, psychologic issues, short temper to extreme outrages, (with nobody around) temper with others, quick to become emotional, crying easily, long/short term memory derp, ortho issues magnified. (Gill, 57 years old)
Joint pain, fatigue, muscle cramps, digestive issues, sight issues, teeth + gum issues, brain fog, memory loss, lyme rage, ice pick pain in feet, rashes, itching, dyslexia, stiffness, loss of mobility. (Lori, 57 years old)
Extreme fatigue and migraines/daily headaches, brain fog. (Sue, 57 years old)
Headaches, sweating, bullseye rash, neuralgia, trouble walking, trouble reading and writing, ringing in my ears, elastic and acrostic seizures, frequent falls, trouble speaking and swallowing, air hunger, gasping for air, heart palpitations, swollen feet, joint pain, rib pain, muscle pain, twitching shooting pains, itching, and burning. (Teresa, 57 years old)
Severe Rheumatoid Arthritis. (Pamela, 58 years old)
So sick. (Sandy, 58 years old)
Meningitis. Rheumatoid arthritis, auto immune issues, skin cancer, breast cancer, thyroid issues, high blood pressure, brain fog, neurological issues, frozen shoulders. (Terri, 58 years old)
My nervous system is messed up and I shake, my body hurts, bones and joints, my heart is bad, my eyes are bad, my hearing is bad and ringing in my ears. No energy, ph balance is off, lack of B-12. No medical help here in Arkansas. (Regina, 58 years old)
Meningitis, rheumatoid arthritis, auto immune issues, skin cancer, breast cancer, thyroid issues, high blood pressure, brain fog, neurological issues, and frozen shoulders (Terri, 58 years old)
Fever, chills, sweating, headache, fog brain (if that’s a thing), fatigue stiff joints and rash. (Mary, 59 years old)
Too many to list. (Colette, 59 years old)
Joint pain, fatigue, migraines, brain fog, adreanial disfunction, hormone issues, arthritis, fever blisters, sciatica, and vertigo. (Vicki, 59 years old)
Encephalitis, arthritis, neuropathy. (Helen, 60 years old)
Everything, pain throughout my central nervous system, head pain, chest and heart pain, ringing in ears, selling inflammation, digestive leaky gut acid reflux, IBS, mood swings, sweats, foggy brain, it feels like an elephant is sitting on my head and pressure goes right through. (Cindy, 60 years old)
Shooting lightening pain, brain Fog, “slipping joints”, facial numbness, muscle pain, joint pain, fatigue, headaches, and transient global amnesia. (Karen, 61 years old)
Anxiety that escalates, insomnia, can’t stand to be around people, crowd, restaurants, grocery store, and church. Ringing in ears that is so loud! Depression… no smile! Migrating joint pain, muscle pain, joint and muscle stiffness, muscle weakness, shortness of breath, fullness in throat, vision problems, gaining weight, fatigue, brain fog, forgetfulness, chronic inflammation, chills, headaches (stabbing) and AO joint. Numbness & tingling to all extremities, sharp pain in chest, throat problems,neck stiffness, heart palpitations, itching scalp, jaw pain, and chest pain through to my back. A metallic taste in mouth and I also have random bouts of pain – for example, my ankle felt injured and hurt for two weeks but had no injury. Same in foot, knees, elbow & spine. Also today I started having tremors in my hands & head! (Angela, 61 years old)
Fatigue, sore joints, stinging-biting pain in legs and feet, skin lesions, hair loss, gut issues, heart arrhythmias, brain fog, and vision issues. (Emma, 61 years old)
Numbness, stiff joints, rash, fatigue. (Sue, 63 years old)
No energy and aching body (Betty, 63 years old)
Fatigue, overall body aches, brain fog, and weight gain. (Deborah, 64 years old)
Extreme weakness and fatigue, shortness of breath, Lymphedema, memory problems, reading comprehension trouble, problems doing simple math, and can no longer multitask. (Daisy, 64 years old)
Much pain in legs, shoulders and back. Fatigue, different infections, memory failure, some breathing issues. Stiffness. (Nancy M., 64 years old)
Arthritis, TMJ, short term memory loss, insomnia, tendon surgery, plantar fascistic, lymphedemia, neck pain, ringing ears, sore throat, head ache, exhaustion, belly pains, female pains, cystic ovaries, fibromyalgia, skin burning, urethritis with negative urinalysis, cherry amangiomas, carpal tunnel, trigger finger, peripheral neuropathy, vulvullar neuropathy(shooting Pain), clumsinesses and droping things, floaters in my eyes, cataracts, gradual hearing loss, eye lid twitichin, can’t stand florescent lights, restless legs, generlized jerkiness/startle at night keeping me awake, foggy brain, achilles heel problems, long bone shooting pain, leg cramps, feet cramps, rounded shoulders, fingernail grown out curving downward, dizziness, irregualr heart beats during the night, falling down stairs, strange skin rashes not bulls eye, teeth integrity problems, word blocking, difficulty dialing phone numbers in sequance, or using a TV remote, some isolation, painful urination, circular thinning, difficulty reading a book, all in all the list is about 85 symptoms. Plus an auto immue disease called Lichen Sclerosus of the vulva. Strange stretch marks, shooting pains and hair loos. (Rogene, 64 years old)
Pain, concentration, forgetfulness, migraines, joints arthritis, passing out. (Nancy, 64 years)
Chemical sensitivity, in the early years I was very irritable, and tinnitus. (Sally, 65 years old)
Migraine, vertigo, confusion, memory loss, loss of balance and coordination, extreme fatigue which can go on for days, especially after exertion, loss of stamina, shortness of breath and air hunger, insomnia, skin rash, heart palpitations, frequent respiratory infections, trouble swallowing due to muscle weakness, pain and weakness all over, low pelvic pain, and painful menses. (Sally, 65 years old)
Brain fog, tinnitus, eye floaters, anxiety, neurological issues, fatigue, Bell’s palsy, seizure, neck pain, and hearing loss. The one that hurts me most is I have no desires to be close to my loving husband of 42 years and he has stood by me through 16 years of this terrible disease. (Pat, 65 years old)
Primary symptoms are dizziness, flu-like fatigue, paresthesia in hands and feet, shortness of breath, heavy/bleary eyes, pimply rash (gone), floaters, flashes in peripheral field of vision, and dry mouth. Also, severe arthritis in my neck, damaged rotator cuff tendon, and heel pain (gone). (David B., 67 years old)
Fatigue, foggy brain, joint pain, and poor sleep. (Jerre, 72 years old)

Lyme Disease Facts

What are some interesting facts about Lyme Disease?

It is difficult to accurately diagnose and tedious to treat. It is hard to know if you have eliminated the bacteria completely from your system. (Gracie, 15 years old)
It can be misdiagnosed as other problems like Chronic Fatigue Syndrome and Multiple Sclerosis (Nora, 22 years old)
It is extremely easy to contract. (Korli, 26 years old)
It mimics so many other diseases. It effects every single person differently and so no treatment protocol is the same. (Stephanie, 26 years old)
The CDC does not recognize chronic Lyme disease. Therefore, it is a nightmare having a family doctor sympathize and properly treat. (Kristin, 27 years old)
That most doctors are not knowledgeable concerning Lyme. (Rachel m., 27 years old)
Easy to get and hard to treat. Mimics so many illnesses: MS, ALS, Parkinson’s, Rheumatoid Arthritis, act. Isn’t just Lyme it’s a multi-systemic infection (viruses, fungus, parasites, toxicity from heavy metals, mold, candida, act.) (Brittany, 29 years old)
It’s interesting how many sick people are out there but the medical community is inferior of this fact (Kitsune, 30 years old)
It’s interesting that 2 different doctors, whom both went to medical school and have degrees mounted on their walls, can tell me 2 completely different things. Lyme disease is confusing!!! (Tiffany, 32 years old)
Lyme can be passed from mother to child in the womb, multiple tests can come back as false negatives. (Carly, 34 years old)
It morphs (from one symptom to another) daily, weekly and doctors think you’re crazy. (Danielle, 34 years old)
It lowers the immune system and causes depression and anxiety. (Lorraine, 34 years old)
Hardly anyone, including most doctors and apparently the CDC/government, really is well informed and knowledgeable about tick-borne illnesses. Most believe outdated info or myths. (Rachael, 34 years old)
Current criteria for diagnosis is not accurate. (Shannon, 34 years old)
What I have found most interesting is the abundance of contradictory information. (Danielle, 35 years old)
You can have it and not known for years (Rebekah, 35 years old)
It’s not recognized by the CDC, doctors won’t treat it for more than 30 days, there are more confirmed cases of Lyme Disease every year than Cancer & AIDS combined, it can hide from the immune system & antibiotics by forming cysts & biofilms. (Sarah, 37 years old)
When I get the flu, my temperature doesn’t rise above 37 Celsius, although I have clear feverish symptoms. (Sorani, 37 years old)
More than half of people with Lyme disease don’t get a rash, and more than half don’t recall ever being bitten by a tick. Blood tests for Lyme are not very accurate and a diagnosis must be based on clinical symptoms with blood tests making up only part of the information used. (Stacey, 37 years old)
It has different forms which needs different kinds of medication to kill. It tends to hide and come back. (Veronica, 38 years old)
It was only fully discovered in the 1970s in Lyme, CT, but had been speculated for centuries. (James, 39 years old)
It changes form to evade the body’s system. (Leah, 39 years old)
Most people don’t get a bullseye or remember a tick being in them. (Serena, 39 years old)
It steals your free will. (James, 41 years old)
It is sexually transmitted, I gave it to my husband also. (Kelly, 43 years old)
You can get it from other bugs, not just ticks, and it can be passed in utterance. Get treated early on, if later it becomes harder to treat. (Kristen, 44 years old)
It mimics other conditions and is highly misdiagnosed. (Marianne, 44 years old)
How hard it is to be diagnosed! (Chris, 45 years old)
It’s smart. (Laura, 45 years old)
It’s spreading through mosquitos now. It’s a silent epidemic (Leslie, 45 years old)
Lyme is an epidemic. (Michelle, 45 years old)
The numbers of infected people, and others still think chronic Lyme doesn’t exist. (Mary J., 46 years old)
It’s underfunded, under researched and flat out ignored by the government. (Sara P., 46 years old)
Doctors do not know enough about the chronic effects of patients that have gone untreated for years. (Marybeth, 47 years old)
People who got Lyme through a dirty vaccine and those who got Lyme through an infected insect/arachnid — have the same disease. ((Cheryl) L., 48 years old)
Thanks to Lyme, my body predicts the weather. (Kim, 48 years old)
Lyme is not a disease of inflammation. It is a disease of immunosuppression caused by the fungal antigen, Spa, which is a TL/2 triacetin-lipoprotein on the outer protein coat of Borrelia burgdorferi (the spirochete that lives in the gut of several species of ticks and is transmitted to the host through a tick bite). Borrelia burgdorferi does do some damage to the human body but most of that damage is done within the first 24 after contracting it. Most people think that Borrelia burgdorferi and its “biofilm” are what cause humans to get so sick but that is not that case. When Borrelia burgdorferi enters the human, it begins to bleb (aka shed) its outer protein coat which contains Spa. Once Spa enters the body, it begins to destroy the immune system and reactivates latent viruses such as Epstein Barr (EBV), Cytomegalovirus, and Herpes Simplex 1 & 6. These infections create a sepsis infection. The most detrimental virus is EBV. Once this one is reactivated, it incorporates itself into the immune system macrophage B cells (these are cells that are responsible for finding & engulfing foreign pathogens). EBV denatures the shape of macrophage B cells, prevents these cells from performing their job, and prevents these cells from going through apoptosis (cell suicide). So, we are left with macrophage B cells that cannot seek and engulf foreign pathogens nor can they commit suicide like they are programmed to do once they no longer function properly. The host/human is left immunocompromised, so they cannot fight off all these reactivated latent viruses that are causing sepsis infections. (Melissa, 48 years old)
There are more than 100 different strains of lyme in North America and more than 300 worldwide Lyme spirochetes are called the Great imitator and are similar in many ways to syphilis they can morph and hide and Life to Live in tissue rather than blood in chronic Lyme disease patients treatment is unique to each individual Lyme is contracted by more than just the black legged tick. (Jill, 49 years old)
Antibiotic resistant, comes with coinfections, difficult to diagnose, and a political hot potato. (Raquel, 49 years old)
That people in the medical sock question it… I don’t understand why?? (Christina, 50 years old)
I find it interesting that there is allegedly no Lyme in my state. (Cynthia, 50 years old)
So many have it. (Leslie, 50 years old)
It’s everywhere!! (Shari, 50 years old)
Just awful to experience. You feel like you are going to die! (Viki, 50 years old)
Chronic Lyme is not curable, it can be passed from mother to child, and partner to partner. (Christi, 51 years old)
I honestly don’t find Lyme interesting. I find it devastating and it has robbed me of years of my life. Plus, I need to find the money to have my son tested as I didn’t know I had it when I was pregnant. I have been treated like a mental case by many doctors, told I was high strung, all in my head been on 22 psych drugs of various kinds because they were positive I had a mental issue not even looking for a legit disease like a Lyme. Even had one doctor that wanted me to check into the mental floor of a hospital for 2 weeks. I didn’t go. (Teri, 52 years old)
Most mainstream doctors do not know how to adequately test or treat it. (Susan, 53 years old)
50% are false negative because the primary assay for the one organism found in Lyme’s, CT, borrelia, requires a competent immune system to create the antibody against borrelia-the 199-299 other pathogens associated with tick borne infection may impact the patient’s CD34+ cells, the mother of immune system cells- only 30-50 % that get exposed to borrelia have a bulls eye rash- all the pathogens from tick to human can be transmitted within hours – last US fed funded “Lyme’s” or tick borne infection study: 1996- in 2015: there were 1,992 west Nike virus pts identified. Federal US funding for research: $24 mil/pt.-in 2015: ~500k new tick-borne infections- maybe $76/pt. fed funding – though fell under fibromyalgia etc.-the American Infectious Disease Society denies the facts about tick borne infection & thus the US is light years behind U.K., China & Europe in care for people with tick borne infection-Lyme’s disease refers to one infectious organism. Is HIV a disease or tuberculosis? “Lyme’s Disease” is inaccurate. My experience is with tick borne infection of which I had 6 organisms. -I got my tick bite in my yard in FL & was immediately placed on doxy. 5 yrs. later, I lost my peripheral vision etc. So, tick borne infections are everywhere a tick may reside. The small lone star tick, in the south, is aggressive & carries many pathogens. – this is NOT a disease, it is a tick or insect borne infection. (Bridgette, 54 years old)
How doctors don’t believe in chronic Lyme. (Kim, 54 years old)
It doesn’t take 36-48 hours to transmit the bacteria, it can take only minutes. The CDC has removed the most sensitive bands on the Western Blot test, making testing so difficult. (Julie, 55 years old)
CDC falsified testing to create a vaccine. They lie, and doctors follow their protocol so acute cases don’t get 8 weeks of antibiotics, so they become chronic. Medical students are taught wrong information. MS, ALS, Fibromyalgia, Parkinson’s and possibly Alzheimer’s too are caused from Lyme and co infections. Easy to get, hard to diagnose and treat. (Kimberly, 55 years old)
There is nothing interesting about Lyme Disease and the facts are that this is Criminal. (Marti, 55 years old)
It is all consuming. (Ann, 56 years old)
Testing is unreliable, CDC standards are unhelpful for those with long term illness, general physicians are uneducated about this pandemic illness for which there is no long-term cure. (Jill, 56 years old)
That it is spread by mosquitos, spiders and flies too. That you can have for years and not know. Coinfections etc. (Robin, 56 years old)
How devastatingly ill you can be and still look like a normal healthy person. (Steve, 56 years old)
My high school diploma is better equipped than a dry’s sheepskin. (Gill, 57 years old)
It’s just all so complicated. The diagnosis, the treatment, the symptoms. I always tell everybody that they should expect their Lyme experience to be different from everyone else’s. (Lori, 57 years old)
You don’t need a bullseye rash. (Sue, 57 years old)
No epidemiological studies on cadavers across ages & causes of death to see accurate numbers of population infected. Alan MacDonald has demonstrated its presence in glioblastoma specimens & Alzheimer’s brains. No evidence that anyone has ever been cured. (Teresa, 57 years old
Deadly. Not enough Dr and insurance coverage. But we have so much wrong treatment for other infections are covered if one can find a Dr. (Sandy, 58 years old)
No one knows the truth. (Terri, 58 years old)
Many doctors admit to not knowing much about it. (Colette, 59 years old)
You don’t have to be in the woods or high grass to get bitten. I didn’t even know I had been bitten and I don’t go into the woods or tall grass. (Mary, 59 years old)
They say you can’t get it in TX, they lie. The symptoms change. It’s hard to find a Dr who knows about it in Tx. (Vicki, 59 years old)
It’s smart and plays Russian roulette with every system to live or let die. (Cindy, 60 years old)
Hard to diagnose, 80% are fine if they are initially treated after bite, the is no perfect formula for treatment. (Helen, 60 years old)
The disbelief that the general medical physicians still deny that it exists. (Emma, 61 years old)
Cure is difficult. (Karen, 61 years old)
It’s contagious, more than we realize. (Betty, 63 years old)
Doctors have no clue about Chronic Lyme. (Sue, 63 years old)
Not so much interesting as sad! That most of what is published is wrong information and most doctors are less informed than people who have Lyme! (Daisy, 64 years old)
Like syphilis, hard to diagnose and hard to eradicate. (Deborah, 64 years old)
I can’t treat myself – had to leave work- no more gardening or yoga. (Nancy, 64 years old)
It takes over your life, Doctors don’t know how to treat, they just pump you up with antibiotics. 😥 (Nancy M., 64 years old)
It often comes with co-infections, I have a printed up about a two foot deep stack of research papers on this, some people get Acrodermatitis Chronical Atrophic Horkheimer, there is more and more reports of folks committing suicide after inappropriate treatment and years of pain, they simply give up, not sure if there’s statistics on this yet. It’s worldwide, can infect a baby in ureter, young men often present with low testosterone levels, a many have low vitamin D levels, CDC approved labs are not adequate to confirm a diagnosis as their tests are up to 60% or more inaccurate, tendency to not tolerate drinking alcohol of any kind, symptom are similar to several other infections including mycoplasma, Some folks live out their lives in wheel chairs or bed rest, it has a strong incidence of ALS type problems and is associated with all audio immune diseases such as Lupus. (Rogene, 64 years old)
People say I look fine. The medical field has NO idea how bad and wide spread this disease is! It’s an epidemic. It’s spread by ticks, mosquitos, and sexually transmitted. You don’t have to find a bull’s eye to know you have Lyme disease. (Pat, 65 years old)
It’s an incredible evolutionary success story. (David B., 67 years old)
They do not know how to treat to success if it is chronic. (Jerry, 72 years old)

Lyme Disease Pain Management

What’s your experience with Lyme Disease-related pain and pain relief?

I had good luck with treating chronic headaches with several sub-cutaneous injections of B3….followed by a daily B3 nasal mist. (Gracie, 15 years old)
I suffer from constant joint pains and aches of which nothing, not even previously prescribed opioids helped. (Nora, 22 years old)
Lyme Disease and its co infections bring a lot of pains and discomfort. (Korli, 26 years old)
Although the pain never goes away, massage helps relieve the pain temporarily. I bought a Hype rice ball to use as a pain reliever at home. I see a physical therapist because I must retrain my body how to function. (Stephanie, 26 years old)
I’ve suffered for 5 yrs. I’ve tried many different antibiotics and pain meds. Yin yoga has helped tons for some of my pain. Some cannabis oils have also helped a tiny bit. (Kristin, 27 years old)
I haven’t found relief at this point. (Rachel m., 27 years old)
Never had pain other than a stiff neck. (Brittany, 29 years old)
Plays by its own rules. (Kitsune, 30 years old)
I started experiencing Lyme symptoms and pain after 10yrs. of being treated for a tick bite. I’m always in pain 24/7. I’ve grown to accept it and push on. I was in pain management for 3yrs. and took Oxycodone the entire time for the pain. (Sabrina, 30 years old)
Very mild migrating pain. No pain management needed. (Tiffany, 32 years old)
Excruciating migraines with neck and shoulder pain do acupuncture, cupping, hot/cold stone massage, trigger point massage, Vichy Shower, use an acupressure mat and pillow along with an infrared mat. Take pain killers like Maxalt for migraines and Excedrin or Aleve for the other pain because I refuse to take heavy duty pain killers since addiction runs in my family. (Carly, 34 years old)
My daily pain ranges from 4-5. I have severe pain where I at first cry, then wale and eventually I am unable to move. I just hang my head and drool. Sometimes there isn’t a pain relief. Headaches I use amitriptyline with clonazepam nothing else works. For daily pain fentanyl and Percocet. For severe pain hydromorphone. Medical marijuana causes great pain. (Danielle, 34 years old)
Nothing has helped. I haven’t tried much. I don’t like pain killers. (Lorraine, 34 years old)
It is horrible and constant, and I do not have access to real relief. This has been a decade +. (Rachael, 34 years old)
Horrible pain daily with no relief. (Shannon, 34 years old)
Thankfully my pain is minimal and typically dissipates with rest. (Danielle, 35 years old)
Pain medication does not work for me. (Rebekah, 35 years old)
Kratom & CBD Oil help, anti-inflammatory meds, detox all day every day, tons of supplements, tons of lemon water, Epsom salt soaks, medical marijuana. (Sarah, 37 years old)
I can’t find any pain relief. (Sorani, 37 years old)
I have chronic, intractable nerve pain in my right (dominant) shoulder, arm and hand. I am in constant intense pain that can only be partially controlled by strong opioid pain medications. I must go to an in-person appointment every month with a pain management specialist. I have a contract agreeing to only receive pain medications from this specialist and am drug tested monthly to ensure that I’m taking only the meds I’m prescribed, as well as to ensure that I am taking my meds and not selling them on the black market. I must take a sleep medication to help reduce my pain enough to sleep at night. (Stacey, 37 years old)
Pain is a huge part of Lyme Disease. (Veronica, 38 years old)
Marijuana has provided me more symptom relief than any other medication. (James, 39 years old)
Pain is not my major issue. (Jamie, 39 years old)
Pain relief is difficult to find and never completely helps. Lots of hoops to jump through before you can find someone to take you seriously. (Leah, 39 years old)
I have treated my pain through my diet. Most of my joint pain went away when I cut out nightshades (potato, tomato, eggplant, peppers, goji berries) and inflammatory foods. (Serena, 39 years old)
The pain was horrible in the beginning only Valium helped now I use naproxen. (Kelly, 43 years old)
Neuropathy, cbd, it helps pain. (Kristen, 44 years old)
Very slow progress and improvement. Every day is different, and you never know how you will feel. (Marianne, 44 years old)
It’s been a struggle. I was misdiagnosed for two years, so my efforts have been more difficult. I’ve found holistic methods to be the most beneficial (following a round of antibiotics). (Chris, 45 years old)
Chronic and painful. (Laura, 45 years old)
It’s always there. (Leslie, 45 years old)
My pain is so bad I can’t even work anymore. (Michelle, 45 years old)
There are few things that work for the pain. It is debilitating. (Mary J., 46 years old)
Pain every day. Hybrid medicinal MJ topical helps for the short duration, Epsom salt baths, but requires a lot of energy. (Sara P., 46 years old)
Chronic severe pain everywhere, non-painted helped and suffering. (Marybeth, 47 years old)
Extreme pain since 2010, I use opioids & cannabis for pain relief, forced to quit my job, professional life:’ (in 2012, after going part time for 2 yrs. Now I use “The Ultimate Lyme Support Kit” by Results RNA and it is the only thing that has helped, even things that cost 10x’s more. (Cheryl L., 48 years old)
Pain is constant 24/7 all over body. (Kim, 48 years old)
The pain can be unbearable, so I must use opioids to be able to get out of bed. I wear a 10 mcg Fentanyl patch that is changed every other day and I take 180 mg of Oxycodone a day. (Melissa, 48 years old)
Pain relief is fleeting most prescription pain medicines offer only temporary relief I live with pain every single day and when I have fibromyalgia flares I am in agony. (Jill, 49 years old)
Neck pain with headache during antibiotics, Alka-Seltzer does the job, insomnia aided by mineral supplement called mint ran by standard process-I take 4 at bedtime and 2 more at 3am. Kefir helps digestion and absorption (Raquel, 49 years old)
Not so much pain other than knee inflammation and inflammation in brain. (Christina, 50 years old)
Worst pain I have ever experienced. No OTC meds or prescription pain meds touched the pain. My leg pain was cramping, spasm like, stabbing, tearing, etc., all at once. (Cynthia, 50 years old)
Pain comes on quickly and stays! Very hard to get pain relief. (Leslie, 50 years old)
Magnesium, B12 in addition to Tramadol and Sabella. (Shari, 50 years old)
I tried Ivermectin and Garlic and other things. I am too tired to type them out. (Viki, 50 years old)
Surgeries and kratom. (Christi, 51 years old)
The pain is pretty much constant. The only time I have ever had any relief was when I was on heavy pain meds coming out of various surgeries. (Teri, 52 years old)
Anti- inflammatory diet, tramadol, and CBC oil. (Susan, 53 years old)
Horrific. I have had kidney stones, surgery and cervical spine issues. Nothing, nothing compares to the fire pain, the lymph node pain, the burning on the soles of one’s feet pain. Nothing really helps. (Bridgette, 54 years old)
Nothing helps except Medical marijuana oil. (Kim, 54 years old)
Lots of pain. Motrin. (Dawn, 55 years old)
Some days I couldn’t even walk 1 mile, and I’m an avid hiker. Some days I feel great. CBD oil helps a lot for pain and inflammation. (Julie, 55 years old)
Horrific pain-hard to relieve. (Kimberly, 55 years old)
Too early in my journey, I’m self-treating right now with no pain relief yet. (Lori, 55 years old)
The pain never goes below a 5. My pain is usually between 5-9. It is awful, nobody should have to live through this pain, ever. (Marti, 55 years old)
Turmeric. (Ann, 56 years old)
Bone pain is worse than childbirth. Nothing helps. (Jill, 56 years old)
Both shoulders hurt a lot and no prescription helps at all. Only Motrin a little bit. All my joints hurt and clicking in all joints like they are loose. Never had before this. (Robin, 56 years old)
Extreme and continuous pain that is not relieved by medication. Medication only provides temp and psychological pain relief. (Steve, 56 years old)
Lots of suffering with no recourse, no med except cannabis. Cannabis oil suppositories work great! No buzz, but I can’t afford it (Gill, 57 years old)
Horrible kidney pain, tooth and gum pain, joint pain (hips and knees), foot pain. Using Spooky2 rife for pain, essential oils, turmeric, and bio mat. (Lori, 57 years old)
At 1st pain levels were frightening. Well controlled now. (Teresa, 57 years old)
Swimming helps and eating healthy. Turmeric in almost everything I eat. (Pamela, 58 years old)
No drugs (Regina, 58 years old)
Pain is unbearable. (Sandy, 58 years old)
Excruciating with minimal relief. (Terri, 58 years old)
A living nightmare. (Colette, 59 years old)
Headaches are the worst. Taking Biographer and CBD oil. (Mary, 59 years old)
Over all pain, extreme adrenal fatigue, hormone issues & arthritis. The best relief I’ve had is with a nutritional supplement (https://cursestoblessings.reliv.com). (Vicki, 59 years old)
No relief, I want to throw in the towel, no quality of life. (Cindy, 60 years old)
Lots of pain. Treat Lyme and get active. (Helen, 60 years old)
The pain seemed to be uncontrollable until I tried cannabis. That was the first time I had rest and relief in 3 long years. (Angela S., 61 years old)
Ginger, turmeric, berberine. (Emma, 61 years old)
Horrible for 10 years before correctly diagnosed (Karen, 61 years old)
Keep it under control with strong immune system! I’m using Plexus. (Betty, 63 years old)
After 20 years, I am better, but my life was changed forever. I must live in my “box.” I do not have the energy to do anything after 6 pm. I lost a 10-year relationship, when I thought I was getting married, because of Lyme. His words, I was not fun anymore. I now, have RA and other complications. For months, strange things kept happening. The scariest was my heart hurt. Went to emergency room a few times thinking I was having heart attack. Then rashes all over my body. One day fell when trying to get out of bed because legs were paralyzed. Things like this went on for about 8 months. Finally, at work, my fingers froze, and I could not type. Dr. finally put in pick line for 21days. After first treatment in 1997, was still sick but no one listened. For 10 years was told I had 3 new cases of Lyme. treated each time. Finally went to a LLMD and was diagnosed with Lyme, Bartonella and Babesiosis. Did long term antibiotics and that helped a lot. Close to three years on meds… Now in 2017, I can function only if I stay in my “box” and know my limitations… I was a single mom of four and am a hard worker…My wish is that Lyme is treated as a real disease and for the public to have knowledge how debilitating it is… I have no life except work and sleep. Years of people ridiculing you for being “so tired.” I am older, so I can handle it, I feel for young people who have their whole life to live with this. Stay Strong. (Sue, 63 years old)
Except for pain in one knee for 8 years at the beginning, I have been fortunate not to have had much pain, all the rest of the symptoms though! (Daisy, 64 years old)
I use acupuncture since antibiotics are no longer effective. (Deborah, 64 years old)
Dig 2012, Dig recently and June 2017 going to a neurologist. When I stand my BP dips 40 points. (Nancy, 64 years old)
Tons of pain, constant. Some days are good and some bad. (Nancy M., 64 years old)
No doctor has offered pain relief methods, I tend to be sensitive to most pain meds. (Rogene, 64 years old)
I don’t have the pain, just body and muscle fatigue so I don’t move much or fast. (Pat, 65 years old)
I take narcotics and medical marijuana (Sally, 65 years old)
I don’t have pain except in my neck and shoulder. (David B., 67 years old)
Pain and ignore the pain. (Anonymous)

Lyme Disease Difficulties

What are the hardest aspects of living with Lyme Disease?

The unpredictability of future flare-ups. (Gracie, 15 years old)
The pain and knowing that it will never fully go away. (Nora, 22 years old)
The fact that the CDC and FDA refuses to recognize it as an actual chronic disease. It’s NO different than cancer! (Korli, 26 years old)
Not knowing when the pain will stop, having to basically quit everything that gives me purpose in life, depending on everyone for just about everything. (Stephanie, 26 years old)
Having a normal life. Having to work and struggle so hard at work. And then I can cripple once I am home. How can I be a good wife and one day mother when I am struggling so bad? (Kristin, 27 years old)
Every day is a struggle. Not being able to function normally and perform at work or be the same mother to my children. It’s heart breaking. (Rachel m., 27 years old)
You don’t have control of your body or mind anymore and symptoms can come and go at any given second. The medical community saying we are crazy and it’s in our head. Treatments are all out of pocket and very expensive and there is no guarantee any of them will work. The debilitating symptoms. (Brittany, 29 years old)
Lyme does not play by any rules and is diff for each person. (Kitsune, 30 years old)
People don’t understand. Each day is hard. It’s hard to work a full-time job but I must, so I can have health insurance. (Michelle, 30 years old)
Feeling alone, losing friendships, isolation, not knowing well you’ll feel well enough to do certain activities, and family members not understanding Lyme disease. (Sabrina, 30 years old)
I act like I am fine to fit in, so no one asks questions because I get sick of talking about it. It’s difficult to explain to someone who hasn’t lived with it. Very frustrating. (Tiffany, 32 years old)
Not being able to live spontaneously. Everything needs to be planned out. You can’t travel light anymore due to all the medication and supplements you need. (Carly, 34 years old)
Not living at all. Currently my jaw pain is extreme, so I am unable to eat. I live off ultra-meal with protein. (Danielle, 34 years old)
My body will shut down if I push too hard. I cannot function. (Lorraine, 34 years old)
No one cares, listens, believes, and there is no real help. (Rachael, 34 years old)
No energy. Loss of memory. (Shannon, 34 years old)
What is most difficult for me is that life goes on with or without me, no matter how I’m feeling. There are always things to be done and people to care for, even when I feel my worst. (Danielle, 35 years old)
Being so sick but looking healthy, friends and family thinking you are making it up or not realizing how much it is affecting your life. (Rebekah, 35 years old)
No one believes you, treatment is unaffordable or unavailable. (Sarah, 37 years old)
Not being able to work and do basic tasks. The severity of the IC pain. The massive and unexplained weight gain. (Sorani, 37 years old)
Social isolation. Sick people, especially those in constant, excruciating pain, aren’t super fun to hang out with. People don’t know how to react to your illness and will avoid you to avoid the uncomfortable feeling. Even the most patient and empathetic of friends burns them self out trying to help in the ways that are easiest for them, so they aren’t available to be there for the things that you really need. (Stacey, 37 years old)
That it is chronic and that no one understands. (Veronica, 38 years old)
Being often too tired to raise my two young children. (James, 39 years old)
Being unable to do life like I used to. The expense of treatment. (Jamie, 39 years old)
How it effects my family. (Leah, 39 years old)
Not being able to remember and be as sharp as I once was and never knowing if I will be able to go out to a social event because I’m feeling badly. (Serena, 39 years old)
Playing with kids and working. (Jen, 40 years old)
Wanting to be productive and not being able. (James, 41 years old)
The stupidity of traditional medical doctors and their denial of the truth right in front of them. They need to help make people healthy. (Kelly, 43 years old)
Not living a quality life, feeling like just existing, wondering if I’m going to make it. (Kristen, 44 years old)
All of it. The inconsistency of symptoms coming and going. (Marianne, 44 years old)
The unknowns. (Chris, 45 years old)
Loss of friends and family. Being too tired and or hurt too much to go anywhere, pain, cost of trying to treat yourself. (Laura, 45 years old)
I’m lucky I have support. Most don’t. Insurance doesn’t cover squat. (Leslie, 45 years old)
The cost is outrageous because CDC doesn’t pay for any of costs related to Lyme. (Michelle, 45 years old)
Trying to function at a normal, pre-Lyme level. I pay dearly for many things that are not strenuous, like vacuuming my house. (Mary J., 46 years old)
Not living, not being able to go places, enjoy live music, go to the beach, date anyone. Not living, besides existing in my bedroom is the hardest aspect for me. No quality of life. No fun. (Sara P., 46 years old)
No one really understands unless they have gone through it, people think you’re lying or faking. (Marybeth, 47 years old)
Brain fog, immense pain, loss of all your assets, your career, many marriages are lost, when my vision is impaired:’ (yea that’s pretty scary! You become just a shell of the person you used to be. No one COULD ever fake Lyme, even the strongest person wouldn’t be able to sustain all the losses and keep taking! Many Lyme patients have had their kids taken away and all kinds of abuse going on. I am a social worker professionally, I want to find a grant to open the first home for Lyme patients and a night shelter and drop in day center in my community, so many people with Lyme must live in abusive situations by their families don’t believe their sick and other reasons too, like unable to work etc. (Cheryl L., 48 years old)
Isolation from family and friends. Finances as well. (Kim, 48 years old)
I’m not living with Lyme. I’m existing, which is vastly different. I’ve lost 90% of who I am and the things I used to do. I can’t go out with friends because I must rest just to conserve energy, so I can work. I sit at home every evening and on the weekends. I do nothing because I’m afraid to plan anything since I never know how I’ll feel. I’d rather live in prison for the rest of my life if I could get back who I used to be both mentally and physically. At least I’d be able to socialize with people and do different things like work in the laundry room or the kitchen and not feel like I got run over by a truck from doing so. I’d be able to talk to my cell mate & the other inmates near me. Now I live in solitude. (Melissa, 48 years old)
Lack of support lack of understanding the fact that it’s an invisible illness and the lack of effective treatment the expense the isolation. (Jill, 49 years old)
Insomnia, I can’t seem to tolerate sugar or caffeine anymore, very tired all the time, losing weight and muscle, I can’t remember things or think very clearly, very tired all the time, it sucks. (Raquel, 49 years old)
Fatigue. (Christina, 50 years old)
The lack of information that the public have regarding Lyme. The conflicting information that is found about Lyme Disease. (Cynthia, 50 years old)
Finding people who are knowledgeable! Finding doctors who know how to help, cost $$. (Leslie, 50 years old)
No one believes it is real! (Shari, 50 years old)
Not having the energy to go out and socialize and the pain. I want it to be over! (Viki, 50 years old)
People can’t “see” it, so they don’t think you’re really that sick. (Christi, 51 years old)
The joy it sucks from your life. I can’t feel joy at anything anymore. I battle depression daily. It has robbed me of good times with family and friends and it robbed me of being able to get in more than 1 year of college, so I could have a career. (Teri, 52 years old)
Pain, low energy, looking fine but feeling awful. (Marcia, 53 years old)
Physical limitations resulting in weight gain. (Michelle, 53 years old)
Fatigue and migraines. Also, the fact that other people cannot understand how debilitating it can be. It’s so isolating. (Susan, 53 years old)
Losing my life. Being in bed 50% of the time. Four years into being treated. Four years being on antibiotics. Getting Bart spots and having terrible pain despite treatment. Hardest part is finding hope. (Bridgette, 54 years old)
Life changing, can’t work. Days of being bed bound. Then on good days I do too much and pay for it. (Kim, 54 years old)
The unknown and heart problems. (Dawn, 55 years old)
It’s the “unseen” illness because one can look fine even though suffering, which makes it hard for others to understand what one is going through. (Julie, 55 years old)
Doctors are uneducated, and you get bullied by them. (Kimberly, 55 years old)
The lack of Dr’s who treat it that take insurance. I have none in Arizona. Zero! (Lori, 55 years old)
I lost my job, home, my cat, my retirement, some friends and my dignity. (Marti, 55 years old)
Not being able to live a normal life. (Ann, 56 years old)
That your whole life has been changed by something that is incurable. I lost my career and am on SSDI. (Jill, 56 years old)
Fatigue and pain and worrying about future issues and recovery. (Robin, 56 years old)
Pain, fatigue and insomnia. (Steve, 56 years old)
Not being able to get employment, no meds, and being ostracized. (Gill, 57 years old)
Having your family disbelieve you. (Lori, 57 years old)
Trying to push through and not giving up. Making people understand what we go through. (Sue, 57 years old)
Not being able to walk, talk, read well or write well. Isolating. The fatigue is so severe it’s devastating. Treatment is not locally available. Unable to get brain scans because of insurance. (Teresa, 57 years old)
Wanting to do things like hiking (which was how I contracted Lyme’s 20yrs. ago) and cannot. Frustrating! (Pamela, 58 years old)
Trying to live. (Regina, 58 years old)
The parasites. The one I have now, and I have had many, don’t know if I will make it through this one. It has teeth and is in my brain. (Sandy, 58 years old)
No support. (Terri, 58 years old)
Living without really living, the pain, the fear, grief and sadness that I cannot care for my family as I would have wanted (Colette, 59 years old)
I was just diagnosed and don’t know yet. (Mary, 59 years old)
You think you’ve gotten past it then it changes and shows up in a different form. (Vicki, 59 years old)
Thinking this is it and I’m going to die, never feeling normal again. (Cindy, 60 years old)
Balancing life. Finding appropriate treatment. (Helen, 60 years old)
Your mind can think of nothing else because the pain is so intense. It seems to take over your life. (Angela S., 61 years old)
Fatigue, never ending and isolation. (Emma, 61 years old)
Pain. (Karen, 61 years old)
Forgetfulness. (Betty, 63 years old)
Extreme fatigue, stiffness and people think it’s in your head. (Sue, 63 years old)
People not understanding that you can’t do what you used to do and that you are not just being lazy! That and finding ways to trick your brain to remember things! (Daisy, 64 years old)
Lack of energy, not able to do everything I need to do in a day. (Deborah, 64 years old)
Never being able to plan, wake up and see how you feel. Dr to Dr it’s expensive. (Nancy, 64 years old)
Everyone thinks you’re fine, and you never are, you just trudge along. I know, no one ever even asks me how I feel. (Nancy M., 64 years old)
Getting an adequate diagnosis and finding a competent affordable doctor as far too many have difficulties with insurance. (Rogene, 64 years old)
My insurance doesn’t cover any of my Naturopath visits or meds. Very expensive and then I still pay insurance premium in case I must go to the hospital. For me it’s no energy, fatigue, and brain fog. I can’t drive because of brain issues. (Pat, 65 years old)
Lack of sympathy and understanding by both doctors and friends and family and lack of treatment options. (Sally, 65 years old)
I was once very active. I am now disabled. Life as I knew it is over. (David B., 67 years old)
Grumpy and cannot get better. (Jerre, 72 years old)
Can’t work like I used to. (Anonymous)

Lyme Disease Advice

What encouragement/advice can you give others who have Lyme Disease?

Stay healthy with a well-rounded vegan diet and stay fit. Keep your immune system in fighting shape. (Gracie, 15 years old)
Never give up trying to get the help you need. Your pain is real, it isn’t in your head. (Nora, 22 years old)
It’s extremely important to keep hanging on. We all must push through. (Korli, 26 years old)
Don’t give up! Always have a positive attitude! Yes, Lyme SUCKS, but there’s not much you can do yourself to get better except for having a positive attitude and smiling. (Stephanie, 26 years old)
I know what you’re going through. (Kristin, 27 years old)
Keep searching, stay positive. (Rachel m., 27 years old)
Never stop fighting to regain your health and keep advocating to find a cure. (Brittany, 29 years old)
Find a support group, the medical community will fail you. (Kitsune, 30 years old)
Keep fighting. (Michelle, 30 years old)
You’re not alone. (Tiffany, 32 years old)
Be diligent. Press on your doctors. If you think you have Lyme, trust your gut and find a doctor who believes you, not one that will be little you. (Carly, 34 years old)
Keep searching for the remedy that’s right for you. (Lorraine, 34 years old)
Join support groups. (Rachael, 34 years old)
Keep trying. One day at a time. (Shannon, 34 years old)
Hang in there! Some days will be better than others. (Danielle, 35 years old)
You’re not alone, join support groups on FB or elsewhere to discuss and share information, thoughts, feelings, and encouragement. (Sarah, 37 years old)
Stop feeling guilty about being sick. It’s not a choice you made, it’s not your fault, and you don’t have to feel bad about the help you need or the ways your life may change. (Stacey, 37 years old)
God understands, and He can help. (Veronica, 38 years old)
See a Lyme literate doctor. Lyme is controversial in the medical world and non-Lyme literate doctors dismiss it often or discount its severity. (James, 39 years old)
You can get better! Even on your most difficult days- remember that you can get better. Be your own advocate. Educate yourself and demand better treatment. (Jamie, 39 years old)
Be your own advocate. You must do your own research and do not take no for an answer or let a health care provider make you question your own experiences. (Leah, 39 years old)
Don’t give up looking for answers and finding the truth. It took me 6 years and at least 7 doctors to find my diagnosis and start getting better. It will get better. (Serena, 39 years old)
Get second opinions (Jen, 40 years old)
Don’t give up and take your vitamins. (James, 41 years old)
Lyme literate docs do exist find one they will help you. (Kelly, 43 years old)
Hold onto HOPE, some days it’s all we have. (Kristen, 44 years old)
There are many people diagnosed with Lyme disease and there are support groups. I’ve met a lot of understanding people who are willing to share their experiences. (Marianne, 44 years old)
Keep advocating for yourself. (Chris, 45 years old)
Detox, keep hope alive, do the best you can and fight for yourself. (Laura, 45 years old)
Lean on those that have been through it. There are common notices you can seek help from. Go holistic. Stay away from gluten. Stevia is your friend. (Leslie, 45 years old)
Detox through diet, skin, hair, acupuncture, massage and take this disease One Day at a Time! (Michelle, 45 years old)
Stay strong, don’t give up. You will find something that will work. (Mary J., 46 years old)
Don’t give up, be your own advocate because no doctors care. (Sara P., 46 years old)
Have faith that It will get better, surrender to the disease versus fighting it, you have no control. (Marybeth, 47 years old)
Keep looking for answers and never give up! Change will come, and we must keep exposing the truth at ALL costs! ((Cheryl) L., 48 years old)
Try to not focus on it and find the blessings in life like the people I’ve met cause of my Lyme. (Kim, 48 years old)
There’s no hope for getting better because nothing can fix your mangled macrophage B cells except a chemotherapy drug called Rotuman (I think that’s the spelling), which is not allowed to be used to treat Lyme patients. (Melissa, 48 years old)
Never ever give up hope get dressed every single day even if you don’t leave the house set daily goals even if there are something as simple as today I will wash my hair Reach Out and educate others sometimes people shy away from things they don’t understand (Jill, 49 years old)
Some days are good, some days are bad, you need to be kind to yourself and eat and rest and be hopeful. (Raquel, 49 years old)
Seek help. (Christina, 50 years old)
Explore all your options for treatment, talk to your friends and family, don’t give up! (Cynthia, 50 years old)
Search for correct info and help. (Leslie, 50 years old)
There is hoping to feel better. Find an LLMD that understands the disease and co infections. (Shari, 50 years old)
Just hang in there. I am enduring against my physical will to just want to give in. Hoping for a miracle! (Viki, 50 years old)
Connect with others who are also suffering, for support, and fight for your life! Don’t let the disease win! (Christi, 51 years old)
Just don’t give up. As bad as it gets, I keep telling myself I am going to beat this. (Teri, 52 years old)
Keep pushing forward. (Marcia, 53 years old)
Find a Lyme literate doctor. Don’t waste time with rheumatologist, infectious disease, pain management. (Susan, 53 years old)
If you can find hope, write it down and revisit it. Find a support group. You know your body better than anyone. A veterinarian will know more about tick borne infection than your primary MD. Look for Lyme Literate MD’s. LLMD’s. If you find one that takes insurance, be patient with their staff. (Bridgette, 54 years old)
Find a LLMD who knows what they are doing and BELIEVES you. (Kim, 54 years old)
Don’t give up. Find a Dr. Who will listen, be your own advocate, try to think positive so you can get well quicker. (Julie, 55 years old)
Go with your gut! (Kimberly, 55 years old)
Join support groups online or near your town. Get in touch with another Lyme, it is so very important. We together, are our greatest strength, courage and encouragement. (Marti, 55 years old)
Research. (Ann, 56 years old)
Early treatment will help prevent long term illness. Don’t take no for an answer, find an educated doctor. (Jill, 56 years old)
I’m still new so I don’t know much. (Robin, 56 years old)
Don’t give up. Hopefully a cure is right around the corner. (Steve, 56 years old)
Study. you are on your own! Critically think everything related to this pile of mis-information.(Gill, 57 years old)
Look for a Lyme support group, or a private Lyme FB page. You don’t have to do this alone, there are people out there who get it. (Lori, 57 years old)
Keep trying. (Sue, 57 years old)
Take care of yourself. Get out with people. Have a purpose to distract you. Simplify your life. (Teresa, 57 years old)
Be patient with yourself. (Pamela, 58 years old)
See a good Lyme Dr that has cured, or is in remission at least 3patients (Sandy, 58 years old)
You can get better, I have. Wether it’s remission or Cure it’s possible. (Terri, 58 years old)
Don’t give up, go to as many doctors as it takes, it is going to be a roller coaster with many ups and downs. Hang on for a bumpy ride, it will take every penny you have plus to get better and be your own advocate. (Colette, 59 years old)
Detox, take vitamins, take your antibiotics, get rest and stop reading about other stories because we are all different and it makes you have more anxiety. (Mary, 59 years old)
Keep looking for answers. (Vicki, 59 years old)
Surround yourself by people and practitioners who support you. You don’t have to put up with negativity. (Helen, 60 years old)
Do not ever lose hope! I read the book Jesus Living written by Sarah, a fellow Lyme sufferer, for daily encouragement. (Angela S., 61 years old)
Never give up! (Emma, 61 years old)
Get a specialist in Lyme. (Karen, 61 years old)
Go on the program, PLEXUS!!! That Built you are strong immune system!! (Betty, 63 years old)
Don’t believe doctors, you know how sick you are. Get to a LLMD. (Sue, 63 years old)
Don’t let other people’s opinions get you down! Until someone experiences Lyme first hand, they have no clue what it is really like! (Daisy, 64 years old)
Don’t let it define you, try alternate therapies, find a reputable LLMD, and exercise. (Deborah, 64 years old)
Today nothing, read all you can, join groups, what works for one person doesn’t work for all. Keep moving you will lose it if you don’t use it. (Nancy, 64 years old)
I have no encouragement currently, other than I’m starting to believe Plexus is helping in some ways. Doctors and Lyme literate have not helped me. (Nancy M., 64 years old)
Don’t give up you’re not crazy you’re not mental and fire every doctor that tries to tell you are crazy. Be patient with yourself and live as full a life as you can, don’t dispersant form society, join a support group that can affect the states that claim there’s no Lyme in them to change this, get tested for co-infections including viruses. Keep your joints moving don’t let them freeze up, take care of your teeth, drink plenty of water, no gluten, no sugar and seriousness reduce all carb intake, Try the Raw Egg oral tolerance for rebuilding your body and connective tissues. Seek psych health especially if you have Lyme anger episodes, read and establish a movement program. (Rogene, 64 years old)
Don’t give up and join as many Lyme sites on Facebook for support as you can. Don’t waste your time with your MD they don’t have a clue. (Pat, 65 years old)
Be your own doctor. (David B., 67 years old)
Shop around for doctors. Not many that are LLMD. (Jerre, 72 years old)
Ignore the pain, don’t listen to doctors, pray every day. (Anonymous)

Lyme Disease Diet and Exercise

What’s been your experience with diet and exercise?

I feel healthier eating a vegan diet, I consume very little sugar (no processed sugar). I exercise daily and am committed to a regular workout regimen, including cardio & weight training. (Gracie, 15 years old)
They do little to help and at times can cause a worsening of symptoms. (Nora, 22 years old)
The more exercise the better. Much easier said than done. Its impossible most days. (Korli, 26 years old)
Exercise to me is now walking up the stairs or going to get the mail. I also have stopped eating gluten, dairy, peanuts, oranges, and refined sugar. (Stephanie, 26 years old)
Yin yoga has been my saving grace. I also try to do best for diet. I suffer an eating disorder, so I try the best I can. (Kristin, 27 years old)
Strict diet no gluten, dairy or sugar. I’m too weak to exercise so I do light walking when I can. (Brittany, 29 years old)
Dieting is hard. (Kitsune, 30 years old)
I used to work out 6 days a week and eat clean. Now I can’t even work out because of my joint pain and I hardly eat. (Michelle, 30 years old)
I haven’t been able to exercise for about 3yrs. now, since I started getting symptoms of Chronic Lyme. I’ve gained over 40lbs over 3yrs. I’ve attempted the Lyme Diet, I did feel a little better, but couldn’t stick to the Diet. (Sabrina, 30 years old)
I get extremely dizzy and lightheaded when exercising (which never happened before Lyme). Eating healthy and taking supplements seems to help a bit, but I still get really “off” days. (Tiffany, 32 years old)
Exercise is extremely difficult Dietary choices stink. (Carly, 34 years old)
I cannot eat. I cannot stand or sit from the hypotension. (Danielle, 34 years old)
I walk a lot and gave up fast food. (Lorraine, 34 years old)
AIP helps a bit. Exercise kills me. (Rachael, 34 years old)
Reducing carbs has been amazing for me, this includes gluten. Stretching and yoga help some as well. (Danielle, 35 years old)
It’s extremely hard but when you can cut out sugar, gluten and dairy you can have some relief. (Rebekah, 35 years old)
You can’t exercise as it’s too painful, on good days yoga and Pilates are ok. Watch sugar & carbs, try to eat healthy but don’t deny yourself anything. (Sarah, 37 years old)
My diet is constantly changing due to my symptoms, sometimes gastroparesis prevents me from eating solid foods, but I also rarely have enough energy to prepare a meal and exercise is even more rare. Before my health declined I was quite active, but my diet never had any effect on my symptoms. (Stacey, 37 years old)
It helps but does not cure it. (Veronica, 38 years old)
I exercise often, but it doesn’t seem to help with Lyme symptoms. Diet however is very speculative, although I avoid carbohydrates per my doctor. (James, 39 years old)
Diet has helped me tremendously. I am just now getting back into walking some. (Jamie, 39 years old)
It can be helpful, but it takes a large measure of feeling up to it to try in the first place. Takes a lot of effort that at times is almost impossible to muster. (Leah, 39 years old)
Diet and exercise have been critical for my healing. Food got me 80% better before I finally it my diagnosis. Light exercise, lemon water, and sauna have helped me detox all the nasty stuff as the treatment is working to rid me of the Lyme and Babesia. (Serena, 39 years old)
Both help. Gluten free. (Jen, 40 years old)
I eat healthy for the most part and exercise when able. (James, 41 years old)
Restricted diet: no alcohol, no sugar, gluten, dairy in the beginning. As I get better I can have it limited. Exercise was impossible in the beginning but now it’s slowing being added back in my life. Lyme hates exercise, it raises your body temp, it doesn’t like it. (Kelly, 43 years old)
My whole diet has had to change. I ended up with 7 food allergies because of it. For months I had no energy and my strength and muscle tone deteriorated. I was slowly able to lift and pick things up again and slowly do basic yoga again. I went from barely being able to walk a block to walking a mile. (Marianne, 44 years old)
It’s a must, so important! But it is truly a daily struggle. (Chris, 45 years old)
Hard to get off sugar. My exercise is light but must do. (Laura, 45 years old)
Can’t exercise when you’re in pain and swollen. Diet? Every flare, I gain 20lbs in two weeks. (Leslie, 45 years old)
Swimming is the best exercise and only exercise I can handle. Give up sugar, dairy, gluten, soy and whey. (Michelle, 45 years old)
Diet works so-so. Exercise hurts. (Mary J., 46 years old)
Complete diet change to clean & healthy, organic, fresh and gluten free. I’m very limited on the exercising I can do. (Sara P., 46 years old)
Diet has been horrible, hard to eat when you are sleeping 18 hours. Days I’m in pain exercise is a nice idea but not a reality. Exercise is taking a bath. (Marybeth, 47 years old)
Not good and I can’t exercise, walking is sometimes too painful, showering is sometimes too painful, I must force myself. ((Cheryl) L., 48 years old)
Exercise is hard and so is eating. (Kim, 48 years old)
Exercise? Ha-ha! Good joke! I barely have enough energy to go to the bathroom let alone exercise! Diet- I can only eat once a day now. If I eat three meals a day, I end up feeling very sick. I eat whatever I want but only once a day or else I’ll pay the price. (Melissa, 48 years old)
I eat a gluten free dairy free very limited sugar diet with no alcohol and exercise daily is extremely important even when I’m in horrible pain or extremely exhausted because of restless leg syndrome and sarcopenia and exercise help stimulate the lymphatic system which can help get rid of the toxins. (Jill, 49 years old)
Gentle exercise is nice, must eat very clean now I miss junk food, but it makes me feel terrible sick, so I try to eat contentiously, I miss pizza so much. (Raquel, 49 years old)
I keep a strict diet. (Christina, 50 years old)
Cut out as much sugar as possible from your diet. (Cynthia, 50 years old)
Unable to exercise, diet is very hard, different foods make me sick. (Leslie, 50 years old)
When it flairs it’s hard to keep active but I feel better when I do. (Shari, 50 years old)
I can’t do it well, I don’t even know if it is helping. (Viki, 50 years old)
Of course, diet and exercise are important, but I’ve found it to be very difficult to stay focused on those things when you feel so bad from Lyme symptoms. (Christi, 51 years old)
I had to give up most exercising as it wipes me out ever worse afterwards and for the rest of the day. I must do physical therapy right now (3x’s a week for 2 1/2 hrs. each) for a surgery that caused massive nerve damage. I am pretty much out of it for the rest of the day. I try to walk when I can and before this happened, I did like to kayak and bike ride. I have just heard of and ordered a Qigong (spa?) DVD as I have read good things about how it is helping people with Lyme. My diet isn’t the best it could be as I am too exhausted to plan meals. I have never been a big sugar person so that’s not an issue, I have given up my 1 Pepsi a day and eat more fruits and veggies. I am currently looking at what the best diet is to use for Lyme. (Teri, 52 years old)
Sometimes I feel worse after exercising. I feel better when I am careful about diet. (Marcia, 53 years old)
Low impact resistance weight training for a continuous program without experiencing too much fibromyalgia pain. Pool exercise programs allow easier movement without higher pain levels. Diet programs don’t work. Practice healthy eating for long term results. (Michelle, 53 years old)
I am vegan, gluten free, sugar free, and alcohol free. I try to walk at least 3 days a week. (Susan, 53 years old)
I’ve been too ill to do much with this. Every time I start, I get hit by an unexpected something. (Bridgette, 54 years old)
Gluten free helps decrease inflammation. (Kim, 54 years old)
Exercise is impossible right now. (Dawn, 55 years old)
Proper diet and daily exercise are of paramount importance. Organic, non-GMO, non-processed foods are a must. Add supplements like L-Lysine, probiotic, fish oils, and Astragals to help immune function. (Julie, 55 years old)
Eat clean as you can and keep moving. (Kimberly, 55 years old)
I can’t exercise now due to pain. Have not changed diet yet. (Lori, 55 years old)
Hard to follow and difficult to do. (Marti, 55 years old)
Little of both. (Ann, 56 years old)
Gluten, sugar, and dairy free helped reduce inflammation. (Jill, 56 years old)
Diet helps do much no gluten or sugar. I did have some dairy though. Don’t exercise much but I do stretch. (Robin, 56 years old)
An improved diet helps but is not a cure all. Exercise is extremely difficult due to pain and fatigue but can offer mental improvement. (Steve, 56 years old)
I love to exercise, but due to ortho issues, can’t do much though after a good workout. (Gill, 57 years old)
Exercise has been impossible. There were months when I could barely walk and barely get out of bed. Gluten didn’t seem to affect me, but sugar made all the pain intensify. (Lori, 57 years old)
Eat as clean as possible. No exercise. (Sue, 57 years old)
Autoimmune diet helpful. Gentle exercise is crucially important. (Teresa, 57 years old)
Helps a lot! (Pamela, 58 years old)
Walk, food and clean water. (Regina, 58 years old)
Hard to eat organic or things I’m not allergic too. Not exercising now. (Sandy, 58 years old)
After years of on and off treatment some food sensitivities started to happen. Exercise if your body allows, try to eat well. (Colette, 59 years old)
I’ve come off sugar, wheat & potatoes. That seems to help. At my gym we have a recumbent cross trainer & a pool. The arthritis seems less painful when I stay consistent with my exercise. (Vicki, 59 years old)
I did exercise and changed diet elimination of so much, nothing is in my favor set this moment. (Cindy, 60 years old)
Clean healthy food and moderate exercise. (Helen, 60 years old)
Diet & exercise did not change my symptoms or lessen the pain much but in fact sometimes exercise made pain worse. I do refrain from any alcohol as it amplified pain immensely! (Angela S., 61 years old)
Most days I am incapable of exercising. If I do, then there is not enough energy left to do daily tasks. There are some days with exceptions. (Emma, 61 years old)
Can’t lose weight, can’t exercise due to fatigue and pain. (Karen, 61 years old)
Only using Plexus. Nothing else. (Betty, 63 years old)
That does help but I’m bad. Sometimes, my reward for making it through a day would be a bowl of ice cream. I do exercise, but I still hurt. (Sue, 63 years old)
I have Lymphedema supposedly caused by Lyme & have put on over 100 pounds of fluid since I had the 2 bullseye rashes. So, everyone assumes I’m obese from letting myself go. It’s very discouraging! Before Lyme I was an active person, had five children & only weighed 130 pounds. I now weigh 280 & have put on as much as 11 pounds of fluid in one day. Every time that I have a flare-up, more fluid accumulates. (Daisy, 64 years old)
I am an avid cyclist, and it is discouraging when I can’t keep up during flares, or struggle to finish a route, but I don’t quit. Weight gain very discouraging. (Deborah, 64 years old)
Diet is good must eat more salt – exercise is walking about 1-2.5 miles per day and some basic yoga moves. Esp. the breathing. (Nancy, 64 years old)
Exercise has given minimal help, diet does help, I’m just not ready to give up cheese. (Nancy M., 64 years old)
Since I also have lichen sclerosis of the vulvar it’s downright impossible to exorcise. I do try to take a short walk with hiking ogles for stabile outside. I would love to have a small swing pool at home as I’m afford of acquiring an infection where my skin is troublesome on my vulva. My belly feels better with less gas when I eat no gluten or sugars., (Rogene, 64 years old)
No exercise, no energy, diet is difficult for me. Supposed to be no dairy, sugar, eggs, gluten free. Sugar is a real problem for me (addiction?). (Pat, 65 years old)
I went wheat free. Stop exertion while you feel ok. When doing anything, including paperwork, stop and rest with your feet up every 15 minutes or so. (Sally, 65 years old)
Diet hasn’t changed – it was good to begin with. I don’t have any GI issues. I can’t do much of what I used to do for exercise, but I continue to walk at least 1/2 hour a day. (David B., 67 years old)
Avoid sugar, exercise limited due to fatigue. (Jerre, 72 years old)
Eat lots of vegetables, avoid sugar, avoid gluten, exercise everyday no matter how tired, and stay positive. (Anonymous)

Lyme Disease Treatments

What’s been your experience with treatments (medication, etc.)?

I did 28 days of doxycycline in initial stage. From that point on I have worked with a holistic medicine doctor…. trying different herbs/minerals. Currently I’m taking a teaspoon of silver a day. (Gracie, 15 years old)
Nothing has helped so far, none of the twenty medications I have tried. (Nora, 22 years old)
Google the GB-4000. (Korli, 26 years old)
Herbal supplements only made me worse and constantly nauseous. I tried oral antibiotics and would get temporarily relief, only to backslide again shortly after. (Stephanie, 26 years old)
CBD oils have been the only thing really helping. For natural: Magnesium helps a lot, also 5htp are my two ones I rely on. (Kristin, 27 years old)
I am currently on iv antibiotics daily, I have found no symptom relief at this time. (Rachel m., 27 years old)
Have only been on antibiotics for three months so far and seeing small progress. (Brittany, 29 years old)
Haunt had support for the medical community. (Kitsune, 30 years old)
I just did one round of doxycycline. I was told I have PTLD. (Michelle, 30 years old)
Right now, I’m prescribed about 10 different medications just to help my symptoms. I took Doxy and had a horrible reaction to it, ended up in the ER three times. (Sabrina, 30 years old)
5 months of antibiotics with no negative or positive effects. Supplements seem to help the most. (Tiffany, 32 years old)
Doxycycline, IV Rocephin, Bactrim, courted, rifampin, mepronil, clindamycin, Minocycline, UVBI, anti-parasitic, herbals Starting ozone and IV silver soon. (Carly, 34 years old)
Many supplements, Rife, colloidal silver, oral antibiotics, and IV antibiotics. (Danielle, 34 years old)
I did 21 days antibiotics and am on antidepressants. (Lorraine, 34 years old)
28 days of doxy, some anti-nausea meds and sent on my way. (Danielle, 35 years old)
I treated for 3 years with antibiotics and herbals including 6 months with a pick line and then a power port for it Rocephin. I had a lapse in treatment when I was pregnant and then another year of antibiotics including a nightly shot. I am currently taking another break, but my symptoms are tolerable. (Rebekah, 35 years old)
Bactrim made me very sick, but I think I had a big die off. Doxy is ok so far. Mobic helps with inflammation & sleep. (Sarah, 37 years old)
The Lyme treatment really messed up my already messed up gut, so I had to stop. (Sorani, 37 years old)
I went almost two decades, countless doctors, specialists including neurologists at the Cleveland Clinic, and an unnecessary surgery, before a was diagnosed by a new family doctor on the first visit. My treatment has been a constantly shifting cocktail of oral antibiotics, arthritis meds, 6 months with a pick line for iv antibiotics. There are always side effects and meds always stop working overtime. Going undiagnosed and untreated for almost 20 years has left me without any clear treatment guidelines. There isn’t even research on treating people in my situation. (Stacey, 37 years old)
My treatment s was very difficult to take. I went from 140 to 110 quickly. I cannot tolerate many herbs either. My iv was deemed unnecessary by my insurance even though their own doctor recommend that I continue, and I was getting better. (Veronica, 38 years old)
Doxycycline, cephalexin, and azithromycin along with probiotics, multivitamins, and herbal tinctures. (James, 39 years old)
I believe it takes herbals and antibiotics both. (Jamie, 39 years old)
That sometimes things that worked before will not work later. (Leah, 39 years old)
I have been in treatment for a little over a year now after 6 years misdiagnosis. I do antibiotics, antifungals, and anti-malarial (for the Babesia), along with supplements for some herbs to support my broken genetic pathways and my immune system. My doctor is trying to cover all the forms of Lyme there are. (Serena, 39 years old)
So far, the best only done doxycycline and it helped quite a bit. (Jen, 40 years old)
Tons of antibiotics (James, 41 years old)
Doxycycline helped my body symptoms but not neuro it doesn’t pass the blood brain barrier. Cefonicid has helped with my neuro, brain/memory issues thank god!! (Kelly, 43 years old)
Nausea, hair falling out more, and heart palps. (Kristen, 44 years old)
I was on amoxicillin for a month, detox, nystatin, supplements, vitamins and probiotic. After a few months I was off the antibiotic, anti-fungal and detox. I receive chelation IV treatments every week since my February diagnosis. (Marianne, 44 years old)
Antibiotics helped me turned the corner, but vitamins and diet have made all the difference. (Chris, 45 years old)
Sometimes helps, sometimes not. (Laura, 45 years old)
Best method is pulsed antibiotics plus holistic methods. Steam saunas are incredible. (Leslie, 45 years old)
I’m doing a holistic treatment through my naturopath doctor and it seems to be working good so far. (Michelle, 45 years old)
I’m doing treatment through a kinesiologist and energy healing. It went into remission within 4 months of diagnosis. (Mary J., 46 years old)
Too many to list. I’ve been on nearly every psych Med and antibiotics for way too long. Pro-biotics are crucial. (Sara P., 46 years old)
Thank god for my dr- he believes in long term treatment – it has taken three and a half years, but I am in remission (Marybeth, 47 years old)
Medications, positive attitude, Anodyne machine, and Rife. (Kim, 48 years old)
I have been trying to find appropriate treatments that is effective for 7 years so far nothing has worked, and I’ve slowly gotten worse I have used antibiotics herbals ozone therapy (Jill, 49 years old)
Minocycline makes me dizzy and Alania with minocycline makes me even more dizzy. (Raquel, 49 years old)
I take antibiotics and herbs. (Christina, 50 years old)
20 days of Doxycycline. (Cynthia, 50 years old)
Can’t find treatment, I’m on my rig medications for fibromyalgia and fatigue. (Leslie, 50 years old)
Myers IV, glutathione, cats claw, and ox bile antibiotics. (Shari, 50 years old)
I’ve been on many antibiotics, tried IV treatments, ozone therapy, and Lyme specific herbal meds and none of them eradicated the Lyme. It got worse when I stopped these things. Now, I’m doing bee venom threat, and it’s working! (Christi, 51 years old)
I tried 3 different antibiotics, but my system wouldn’t tolerate them. I had severe reactions to each one, so I started Dr. Rawl’s Vital Plan herbal treatment. By the end of 2 wks., I was seeing just a tiny bit more energy and the depression was just slightly better. Unfortunately, I had to temporarily stop as my blood pressure shot sky high, so my family doctor told me to stop the herbs until we get it regulated. I am on a low dose of bop med and I’m planning on going back on the herbs in about 2 wks. if all goes well. (Teri, 52 years old)
Do pulsing medications and generally feel better for several months only to relapse and feel worse. (Marcia, 53 years old)
35 years untreated Lyme, then new infection from tick bite in 2005. Three years untreated then three years of antibiotic protocol, ending with 7 weeks Rocephin IV. (Michelle, 53 years old)
Started with doxycycline, switching every 6 weeks to a combination of antibiotics and biofilm busters. Also take many nutritional supplements to boost immunity and heal my gut. Probiotic every night. (Susan, 53 years old)
Makes me sick; I push through them. Rifampin almost killed me because of the drug interactions. (Bridgette, 54 years old)
Too many. I now have a Port for IVIG treatment. (Kim, 54 years old)
Most people experience a Her response a short time after starting treatment because of bacterial die-off. Persist and don’t give up, it’ll get better. (Julie, 55 years old)
Hyperthermia in Germany is great and IV MAH Ozone rules! Coffee enemas a must! (Kimberly, 55 years old)
Expensive as hell. During treatments it is a wonderful space to be in, but it has taken all my money. (Marti, 55 years old)
Trying herbals supplements. Not being treated (Ann, 56 years old)
Combination of antibiotics and herbs and supplements helped. (Jill, 56 years old)
I have tried dozens of treatment types both in concert with Infectious Disease Society and LLMD’s with little improvement. Also, each person’s Lyme disease is specific to them and no two are alike. (Steve, 56 years old)
Dox at onset, nothing but self-help since. (Gill, 57 years old)
I have treated wholly with homeopathic, herbals and essential oils and supplements. (Lori, 57 years old)
Expensive, takes forever, and makes you worse before you get better. (Teresa, 57 years old)
I only take Ibuprofen or Tylenol now. I was on Percocet for many years before. (Pamela, 58 years old)
IV antifungal and antibiotics work the best can’t stay on treatment long enough to get better. Something always interferes (Sandy, 58 years old)
Finding the right formula for treatment can be difficult due to faulty testing. I’ve been on so many. They are learning more every day. (Colette, 59 years old)
On 3 weeks of dox and if joint pain starts, an additional week I was told. (Mary, 59 years old)
Drastic change in diet, homeopathic supplements, 6 months rotation on antibiotics, steroid injections in knee, Bioenhancer treatment, Had the nerves burned in my back, compounded hormones & steroids. The thing that has given me the most and longest relief are my Relive supplements. (Vicki, 59 years old)
The treatments that worked for me were vitamins, herbal treatment protocol, hyperbaric oxygen therapy (40 treatments concurrently) rife treatments, Advanced Cell Training & cannabis at night. (Angela S., 61 years old)
Still exploring. (Emma, 61 years old)
Antibiotics and supplements. (Karen, 61 years old)
I was on five kinds of antibiotic and it ruined my gut with Candida overgrowth! (Betty, 63 years old)
Long term antibiotics helped me. My LLMD said I should probably be on them longer but I could not afford to go to him anymore. (Sue, 63 years old)
The only antibiotics that helped me some, were name brand. No generic ever helped. But when a name brand is even available, insurance won’t pay for it! They cost over $500 for one month. I think the IVIG that I was given when I had Guillain-Barre, helped me more than anything else did! (Daisy, 64 years old)
After 4 years of misdiagnosis (fibromyalgia), finally was properly tested. Found LLMD, tried three different antibiotics over 6 months and used salt/C protocol. Symptoms improved, but I have Lyme flares once or twice a year which I knock back with acupuncture. (Deborah, 64 years old)
My Primary loaded me up with depression meds. I wouldn’t take Lyrica which is crap anyway, most of the meds are. (Nancy, 64 years old)
Antibiotics and prednisone never again, about ruined by liver and kidneys. I’ve been on plexus, some help. Massage has been helping some and Epsom salt baths. Wanting to try Cannabis oil, have heard wonderful things. (Nancy M., 64 years old)
One ax of antibiotics that’s it. Health department out right denied there’s Lyme in Tennessee. (Rogene, 64 years old)
Treating for 5 years, antibiotics, and now plant-based supplements and an antifungal. (Pat, 65 years old)
After being sick for many years, I took 11 months of doxy and quinolone, it didn’t help. (Sally, 65 years old)
I got Lyme in 2006 and it flared up in 2015. I took doxycycline for a month and it had no effect. I’ve been on an herbal protocol since January 2017 and my symptoms don’t last as long. I’m currently getting toward the end of a 60-day regime of tinidazole, which has made symptoms last longer, though not stronger. (David B., 67 years old)
They treated me well when I first was taken to a hospital, but after a few months I began to feel extreme chest pain and was rushed to a hospital, I was released and the doctor said nothing wrong, did nothing, then sent a bill I cannot pay yet I still have pain. (Anonymous)

Lyme Disease Recommendations

Anything you’d recommend for someone with Lyme Disease?

Seek support and do your own research. Advocate for yourself. (Gracie, 15 years old)
IV treatments tend to be far more vigorous than medications, but it could be what kills the bacteria for good. (Nora, 22 years old)
Yes, I would love to personally talk with them! (Korli, 26 years old)
Join a support group, reach out to people, and be willing to advocate for yourself! (Stephanie, 26 years old)
Do yoga. Breathe. Focus on today you are doing the best you can. (Kristin, 27 years old)
Do your research, there’s obviously more to treating this than antibiotics. (Rachel m., 27 years old)
Each person is unique when it comes to treatment. I suggest getting genetic testing, allergy testing, and checking for heavy metals and mold first. Then depending on how long you’ve had Lyme and what symptoms would depend on if they should do antibiotic treatment or herbals. (Brittany, 29 years old)
Find a good functional doctor. (Kitsune, 30 years old)
To keep moving, even when you don’t feel well. Just do what you can! (Sabrina, 30 years old)
Magnesium, vitamin D and probiotics. (Tiffany, 32 years old)
Immediately find an LLMD. (Carly, 34 years old)
Keep searching. We must help each other. (Lorraine, 34 years old)
Support groups. Maybe you’ll be lucky enough to get real help. (Rachael, 34 years old)
Listen to your body! When you’re tired you need to rest, try to prevent the crashes with prevention. (Danielle, 35 years old)
Find a llama and stay in tune with your body. You are your best advocate. (Rebekah, 35 years old)
LLMD as soon as possible. Don’t even bother with your PCP or an Infectious Diseases Doctor as they don’t believe in Lyme & aren’t trained in how to treat it. (Sarah, 37 years old)
IV Ceftriaxone helped me a lot. (Stacey, 37 years old)
Take it one day at a time standing on the promises of God. Otherwise, you will be overwhelmed. (Veronica, 38 years old)
Stick with the treatment and only see a Lyme literate physician. I can’t stress the latter enough. Check out the ILADS website for a Lyme literate doctor. (James, 39 years old)
Diet and building up adrenals is a key factor in treating Lyme. (Jamie, 39 years old)
Research, research and more research and try not to isolate yourself. You need support to make it through this. (Leah, 39 years old)
Listen to your body. It’s ok to rest and recuperate. Your body needs to be nourished with good food to fight this off and get better. There are lots of support systems online that can help answer questions and be there for you. Also get tested for other tick-borne diseases, it rarely gets transmitted by itself. (Serena, 39 years old)
Be vigilant about your health. (James, 41 years old)
The sooner you get on treatment the better. (Kelly, 43 years old)
Try to stay positive! (Kristen, 44 years old)
Find a good Lyme Literate doctor. (Marianne, 44 years old)
Take one day at a time. Seek help from a doctor that listens and then coordinate care with a holistic approach. (Chris, 45 years old)
Fight. (Laura, 45 years old)
Don’t give up! (Michelle, 45 years old)
Find a good Lyme literate doctor and don’t be afraid to try unorthodox treatments. (Mary J., 46 years old)
Do not ever go to the ER unless you’re dying. You will leave pissed off, untreated and told Lyme doesn’t exist. Waste of time! Don’t go to mainstream western medicine Doctors, they know nothing. (Sara P., 46 years old)
Find a Lyme literate doctor. (Marybeth, 47 years old)
Keep your stress level at a minimum. (Kim, 48 years old)
Keep to a strict sleep schedule learn to say no eat clean organic wherever you can. (Jill, 49 years old)
See a chiropractor who does muscle testing they have good supplements to help you sleep and detox and an integrative doctor who is Lyme’s literate medical doctor who really understands disease, be prepared to spend a lot of money. (Raquel, 49 years old)
Get tested (Christina, 50 years old)
Research, Research, Research!!! (Cynthia, 50 years old)
Research. (Leslie, 50 years old)
Change your diet immediately. No gluten, no sugar no dairy! (Shari, 50 years old)
Vinegar, Garlic, anything that is a natural antibiotic. Rest. Be around good people that bring you good vibes. Not those who don’t care! (Viki, 50 years old)
Seriously investigate bee venom therapy. It’s being proven to eradicate chronic Lyme! Many have been in organ failure, living their last days in wheelchairs with MS symptoms, and are now well because of this treatment! (Christi, 51 years old)
One thing I just started was I bought a couple of health meditation CDs and I play one as I am going to sleep each night. I started about 2 wks. ago, so I haven’t noticed any improvements yet except I have brief spells where my thoughts are lighter, and I can see myself in full remission. You just must find one thing that works, and it will give you enough hope to find other things. (Teri, 52 years old)
Follow guidance is someone educated in Lyme. (Susan, 53 years old)
Your experience is your own. If you are single and not above 65, try to find help before you get going on antibiotics. (Bridgette, 54 years old)
Take one day at a time. Go to counseling who understands medical problems, it helps. Keep a journal. (Kim, 54 years old)
Be persistent and be your own advocate. Listen to your body and if you need to rest, rest! It’s ok to say no! (Julie, 55 years old)
Don’t get sucked into LLMD’s methods of making you buy a million supplements and do a million tests. (Kimberly, 55 years old)
Drink a lot of water, detox often, replenish, rest often, find a caring LLMD, find a good support group and breathe. (Marti, 55 years old)
Never take no for an answer, if not diagnosed, keep trying. (Ann, 56 years old)
Become familiar with ILADS and get a good LLMD. (Jill, 56 years old)
Keep fighting. Rest whenever you can and try to stay positive. (Steve, 56 years old)
Hang on to what you were, Hershel is gone. (Gill, 57 years old)
Again, find support. Gather information. Find out what works best for YOU because everyone responds to treatment differently. Give healing modalities 3-6 months to start working, but don’t be afraid to try something else if you don’t think it’s helping (Lori, 57 years old)
Simplify your life. Meditate. Find a well experienced doctor. (Teresa, 57 years old)
Foods that decrease inflammation. Swimming. (Pamela, 58 years old)
Get help ASAP. (Regina, 58 years old)
Get a good doctor. (Sandy, 58 years old)
Pray. (Terri, 58 years old)
Treat early, spend the money or borrow to get the proper care from a LLMD. They are not all good at what they do. (Colette, 59 years old)
Don’t try to do everything like before. Ask for help. (Mary, 59 years old)
Keep trying and looking for answers. Never give up. Try Relive. (Vicki, 59 years old)
Pray. (Cindy, 60 years old)
Educate yourself and don’t be afraid to try different things. (Helen, 60 years old)
Supplements are a must with any treatment. (Emma, 61 years old)
Pray. (Karen, 61 years old)
My answer is above! I feel better now than I did 20 years ago. (Betty, 63 years old)
Get to a LLMD. (Sue, 63 years old)
Rest, rest, rest! Don’t try to live up to other people’s opinions of what you should be able to do! You know your own body! I want to try Cannabis oil as soon as it’s legal in my state! (Daisy, 64 years old)
Try alternate, holistic therapies and watch out for self-proclaimed “LLMD’s” who will take advantage of your desperation. (Deborah, 64 years old)
Don’t panic and be sure your Dr is Lyme Literate – search and find a good Dr. (Nancy, 64 years old)
Not yet, I’ve been over 5 years suffering and not myself yet by no means. Insurance pays nothing so I have a lot of expense on my own, which is very unfair considering drug addicts get free help. (Nancy M., 64 years old)
Do your best to get some sleep. Change doctors when they reject that you have l a physical infectious illness. Try to keep communication open with spouses and friends. (Rogene, 64 years old)
Look for the best LLND, even if you must drive hours! (Pat, 65 years old)
Be your own doctor. (David B., 67 years old)
Get to a specialist. I am looking at Mayo and John Hopkins who have programs. (Jerre, 72 years old)
Eat healthy, diet, pray and exercise. (Anonymous)

Lyme Disease Resources

What specific resources have you found most helpful?

Lyme support groups on Facebook (Gracie, 15 years old)
Anything that the FDA doesn’t approve is most likely the best treatment plan. (Korli, 26 years old)
Support groups! (Stephanie, 26 years old)
I have joined a support group on Facebook and I find it interesting and helpful. (Rachel m., 27 years old)
Dr. Horowitz’s books: Why Can’t I Get Better and How Can I Get better, Stephen Buhner’s book, and the support groups on Facebook. (Brittany, 29 years old)
Support groups that are living this nightmare (Kitsune, 30 years old)
Facebook Lyme Disease Support Groups. (Sabrina, 30 years old)
Truthfully Lyme groups on Facebook. (Carly, 34 years old)
Friends and Facebook groups. (Lorraine, 34 years old)
FB. (Rachael, 34 years old)
Lyme disease blogs. (Shannon, 34 years old)
Others effected by Lyme. (Danielle, 35 years old)
Being on support groups online can seem helpful at the beginning but they ended up adding to my depression. I did better once I left those sites. (Rebekah, 35 years old)
The Women’s Lyme Disease Support Group on FB. (Sarah, 37 years old)
The information from ILADS is very helpful in determining what information is evidence based, and what is fake, or just wrong. There’s a lot of bad information online, trying to take advantage of the desperation of sick people. (Stacey, 37 years old)
Desiring God, not Lyme related but after paying so much many to get well for so many years I have given up on searching for the next cure. (Veronica, 38 years old)
ILADS, Facebook groups (James, 39 years old)
Stephen Burner and Richard Horowitz. (Jamie, 39 years old)
My husband and family, without their support I would not still be fighting. (Leah, 39 years old)
Lymedisease.org, Dr. Horowitz’ two books “How can I get better?” And “Why can’t I get better?”, Bruhner protocol, Cowden protocol, Closed support groups on Facebook, Dr. Shoemaker mold toxicity. (Serena, 39 years old)
Support groups. (James, 41 years old)
Lyme community postings. (Kelly, 43 years old)
Funny movies laughter IS the best medicine, surround yourself with people that truly love you. (Kristen, 44 years old)
Lyme disease association and Facebook accounts. (Marianne, 44 years old)
I’m a part of several blogs and groups but find it difficult to connect to many people only because we all have such different stories. (Chris, 45 years old)
Facebook groups, support group, internet research. (Laura, 45 years old)
Online support groups. (Leslie, 45 years old)
My Lyme group on Facebook. (Michelle, 45 years old)
The Facebook support group. The feedback is wonderful. (Mary J., 46 years old)
Online, Facebook groups, reading articles, and meeting other people with Lyme Disease. (Sara P., 46 years old)
Anything on the internet, so much information. Books with people that have been there, Henry Bughner, an herbalist, homeopathic, use it all – Acupuncture, meditation, therapy, all of it. (Marybeth, 47 years old)
The MLDA. (Kim, 48 years old)
This is a very optimistic survey, huh? No helpful resources, life totally sucks! (Melissa, 48 years old)
Lyme disease of Alberta and I created my own support group when I found there were none that were appropriate or a good fit for me. (Jill, 49 years old)
As many books on Lyme’s as I can find. (Raquel, 49 years old)
Facebook. (Christina, 50 years old)
Facebook support groups. (Leslie, 50 years old)
My LLMD in Michigan. (Shari, 50 years old)
Dr. Horowitz book, “How can I get well!” (Viki, 50 years old)
Dr. Rawl’s videos/books, a fb group that is specifically for Lyme Success Stories. I had to get out of the ones that were all gloom and doom. Other than that, I just do searches online and have found different articles that have helped me. (Teri, 52 years old)
Facebook support groups, Dr. Horwitz book on Lyme. (Susan, 53 years old)
Local support group. (Bridgette, 54 years old)
Forums, healing well.com (Kim, 54 years old)
International Lyme Disease Awareness and Support group on Facebook. Also, sharing with friends and family who have or have had the disease. (Julie, 55 years old)
FB support groups and books. (Kimberly, 55 years old)
Facebook support groups. (Lori, 55 years old)
Facebook Support group’s, Lymedisease.org. (Marti, 55 years old)
Forums and research. (Ann, 56 years old)
ILADS. Midcoast Maine Lyme Disease Support. (Jill, 56 years old)
Facebook groups and all the info they share (Robin, 56 years old)
Mostly via the internet. Each day new treatments through LLMD’s are helping people and being socialized through social media. (Steve, 56 years old)
TruthCures and internet search engines for studies, from link suggestions. (Gill, 57 years old)
Private Lyme pages on Facebook. People are very responsive and helpful. TONS of good resources are available. Also sharing info in local support groups. (Lori, 57 years old)
Facebook groups. (Sandy, 58 years old)
Online groups. (Terri, 58 years old)
lyme.org will give you a list of LLMDs in your area. (Colette, 59 years old)
What detox to use and how it works. googled it. (Mary, 59 years old)
Lyme groups online, google, talking to people with Lyme. (Vicki, 59 years old)
Books by Horowitz and Buhner. (Helen, 60 years old)
Dr Horowitz & Dr Buhner books. (Angela S., 61 years old)
Books, and FB groups. (Emma, 61 years old)
Unlocking Lyme by Dr. Rawls. (Karen, 61 years old)
Plexus products. (Betty, 63 years old)
The blogs and hearing other people’s stories. (Sue, 63 years old)
Articles on line with comments from people who have Lyme! (Daisy, 64 years old)
Very Lyme knowledgeable and compassionate acupuncturist. (Deborah, 64 years old)
Most helpful to me are the groups that I include people with Lyme and there is some good information to at least compare. (Nancy, 64 years old)
My plexus agent, talking to other Lymies, going away from Western medicines, looking into natural healing. (Nancy M., 64 years old)
Internet you-tube medical lectures BY Doctors such as Ri Dr. Richard Horwitz and others including Dr. Garth Nicholson. and join this face book page “Lyme, Candida, Parasites, Arthritis, immune, Mycoplasma, Collagen, Oral Tolerance”. it has a ton of information that will help you navigate this disease and treatment. (Rogene, 64 years old)
Naturopaths. (Pat, 65 years old)
Stephen Buhner’s book “Healing Lyme,” Richard Horowitz “Why Can’t I Get Better?” and Pamela Weintraub “Cure Unknown.” Plus, a long list of web resources, key among them Eva Sappi’s study showing the relative effectiveness of 5 antibiotics. (David B., 67 years old)
Exercise (Anonymous)

Lyme Disease Stories

Share your Lyme Disease story.

I had a tick bite while hiking in Maine back in 2013. After the rash had healed that September I thought I was fine. Till January 2014 I had a very high fever and thought I was going to die from it, lasted nearly 3 weeks. Then after the fever was over my leg began to swell up till the pain got so bad I nearly died and had an out of body experience. I went to the hospital for knee surgery (this was March 2014) after surgery doctors diagnosed that I had Lyme disease. Everyday since then I feel symptoms return but I ignore the pain and keep trying to move forward. (Anonymous)
I noticed some type of bite behind my knee last summer and the tissue around one eye was swollen. Three weeks later I developed Bell’s palsy and nerve sensitivity in my forearms. A blood test confirmed Lyme in 7 bands of my blood. I went to the ER and they put me on 21 days of Doxycycline. A pediatric infectious disease doctor added 7 additional days and said more days would provide no more benefit. I sought help from a holistic doctor who prescribed several natural supplements including a “Detox box” of supplements. Within the year I have had chronic headaches (which seemed to resolve with Vitamin B3 injections) and now I am experiencing foot pain. I will try Epsom salt soaks. And I have another appointment coming up with the infectious disease doctor. (Gracie, 15 years old)
I was diagnosed with Late Stage Lyme Disease two years ago after I had been infected more than five years ago. I started feeling pain in my left elbow that made me want to crack it all the time. That pain radiated to all my other joints in the span of a month or two. Since then, I go randomly numb in my left arm and my overall body pain is constant and exhausting. I also suffer from the psychological effects of the disease, meaning that I have memory and concentration problems, as well as terrible insomnia. I have been seeking treatment for almost two years now, and so far nothing has helped in any way. (Nora, 22 years old)
I was in a car accident 5 yrs. ago. I never recovered from it. I was super sick with tons of symptoms and never got better. Being told I was crazy and it was all in my head. I had to change family doctors and see any doctor that would see me. I saw over 15 Doctors. Last year, my naturopath dr told me I am too sick for fibromyalgia, which is what I told I had. I was then tested for Lyme and showed positive. I am still fighting the doctors, because my family dr doesn’t believe in chronic Lyme disease. It is really hard having a disease when your dr doesn’t believe it. I normally have a positive energy with all the Yoga I do to help myself. But with that it has made doctors ignore me and misdiagnose me. (Kristin, 27 years old)
I was recently diagnosed with Lyme disease, I am currently undergoing daily IV antibiotics, and trying to remain hopeful. It took me four weeks to get a diagnosis, which I received through a spinal tap and blood work. (Rachel M., 27 years old)
I was bit May 2016. I had a big red rash that eventually formed a bullseye. I went to my PCP, and he refused to treat me because I didn’t see the tick. That delayed my treatment by seven months although I knew I had it all along. (Brittany, 29 years old)
I was bit by a tick three years ago and I’m not the same person now. (Kitsune, 30 years old)
January 21, 2016: I was driving home from the mall with my daughter, I got extremely lightheaded and a zoned out feeling. I felt like I was drunk out of nowhere. The feeling never went away. I was told it was anxiety. I’ve seen neurologists, ENT, endocrinologist… after six months of multiple doctors, one doctor finally gave me an answer, Lyme disease. I don’t recall ever having to pull a tick off of me, nor a rash of any kind. I’ve had two positive Lyme/co-infection tests. I have slowly started feeling a little better, but I have doubts I will ever feel 100%…. Still trying though, I’ll never give up!! (Tiffany, 32 years old)
Bit in 2009. Bull’s eye rash. Treated 28 days doxy. Along the way strange things were occurring with my health… Reoccurring strep throat, more frequent headaches, forgetfulness2011 fell very ill with excruciating migraines followed by fatigue, shortness of breath, anxiety/depression/rage, short term memory loss, head/neck/shoulder/back pain, confusion, tachycardia, palpitations, reoccurring strep throat, sinus/ear infections, random rashes, nausea, diarrhea, dizziness, foot pain, knee pain, Bartonella scratches. Was tested for Lyme. Test was CDC positive; however, doctor told me I needed a spinal tap to truly prove I had it. Went through with the tap which was rushed and caused cerebral spinal fluid leakage. Tap came back negative. Left misdiagnosed and untreated for 3 years. Finally diagnosed in Oct 2014. Treating ever since. (Carly, 34 years old)
Lyme disease. Danielle was bitten by ticks in Canada, upper Wisconsin, Minnesota and Virginia. After the first time she was bitten she started having her lymph nodes swell to the size of apples under her armpits. She had an x-ray of her chest and was told she had to have lymphoma. She did not. She was continuously ill and her pediatrician gave her amoxicillin daily for a year. ( She was 10). Her illnesses subsided till 2009. She worked, was married, and was so very happy. She is now divorced ( he wanted his life back). She lives with her parents, if you want to call this living. She laughed this month for the first time in 8 years. (Danielle, 34 years old)
I was sick for years. Doctors were just telling me I had sinusitis. I knew something else was wrong. I went to my ear nose and throat doctor. He tested me for Lyme. I was put on antibiotics and got better for a while, but now I’ve been diagnosed with EBV and I can hardly function day to day. (Lorraine, 34 years old)
Got very sick, told by different doctors I have EBV, Rheumatoid Arthritis, etc. Diagnosed by Igenex Labs, self treating with supplements, diet and detoxing. (Sarah, 37 years old)
I feel like I’ve shared my story in my previous answers. I’ve been sick since I was 15 but went most of my life undiagnosed and untreated. I do finally have a diagnosis, but after so long the antibiotics only keep my illness at bay. Right now, I don’t feel there’s any chance for a cure. (Stacey, 37 years old)
I was bitten in 2006 by 3 ticks in the woods of Maryland. I started to get flu-like symptoms so I went to urgent care. They did nothing. 4 years later I could no longer make it up my stairs and then the pain started. I tried everything but got worse. The iv seemed to work but was stopped by insurance. I had to quit in 2014 and have not had a full time job since. I have huge sensitivity to heat and the sun so I can’t work at most of the places in Nevada. The worst part is that it has taken everything from me to the point where I don’t recognize myself, I am no longer the independent, outgoing person I use to be. But my only consolation in life or in death is that I belong to Jesus Christ, there is no other consolation. (Veronica, 38 years old)
I was bitten April 18, 2017, diagnosed May 5, 2017. I started doxycycline for 33 days, it improved at first- then it got worse. I went on herbal protocol. I began Ceftin which has helped a lot. (Jamie, 39 years old)
Diagnosed November 2016, but a Lyme sufferer. I likely contracted it during the years of 1997 to 2001 while stationed in the Marine Corps in coastal NC. While training we would be bombarded with ticks in the Carolina swamps. (James, 39 years old)
I live in Central MA and had my first bite from a tick was in late 2009 when doing yard work. I have had 6 ticks on me since then within a 4 year time period and no one was attached to me for more than a few hours. I also never got a bullseye rash. I started having symptoms with dizziness, joint pain, neck pain, and near fainting soon after the first bite in 2009. I saw my primary care, GI specialist, ENT doctor, neurologist within in a three month period. They did one Lyme test that they said was negative. Little did I know at the time, that the testing is very inaccurate. They passed it off as IBS, stress and tennis elbow. I continued to trudge along and try different doctors over the next 5 years. I got really bad in early 2012 and lost 25 pounds in 2.5 months after a bad GI specialist test and treatment. It was then that I decided to take my own health into my own hands and look to nutrition and my own research. I completely changed my diet and lifestyle after doing nutritional research. Given that I have a Bachelors of Biology, I delved into the science behind gut issues and allergies. I got much better, but still had symptoms and issues that I couldn’t get rid of until I found a good functional MD that tested me again for Lyme and found it to be positive and found Babesia as well. I started treatment in spring 2016 and many symptoms have greatly improved. (Serena, 39 years)
I think I have had it over 20 years. Got diagnosed in 2010. (James, 41 years old)
I was bitten in July 2016 in Eureka, MO, I believe by a lone star tick but unsure as we only found the bullseye, not the tick. It took 6wks to be diagnosed and finally be put on medication because 7 doctors passed me from one to another instead of helping me. I have issues still a year later because of it. (Kelly, 43 years old)
I was sick for about a year and a half. Many doctors, specialists, hospitalizations and mis diagnosis. I finally found a functional medicine doctor who diagnosed me with Lyme. (Marianne, 44 years old)
Chronic Lyme. Almost committed suicide 3 times. Treated after severe Noro symptoms. Ruined my body and my life. Still test CDC positive. Haven’t been but since 2001. (Laura, 45 years old)
It’s long and grueling, but I spent two years seeking answers to muscle and joint pain. It was only when my pain came to the point where stairs were near impossible, that a doctor finally listened. Before that, I was told it was hormonal…that it was depression…that I was “overdoing it”. I had basically been told to accept pain as my way of life. I went from someone that had at one time been teaching multiple fitness classes a week & running 5 miles a day, to someone that could barely get up a flight of stairs or walk to the car. A round of antibiotics, paired with holistic meds, vitamins, and dietary changes have me on the road to healing. I’m back to running a mile a day, and although I’m not teaching fitness, I’m able to lift weights again. I’m still not back to before, but I’m on the road to success. I’m taking it one day at a time, and I’m so appreciative! (Chris, 45 years old)
Diagnosed in 2010 after what I thought was the flu, and then gaining rapid weight. Since then it has been a struggle to receive help. I found James Clinic, but it is so expensive. Still I found a way to continue it for 1.5 years. 6 months ago, I found out I have ovarian cysts and was told to go off all meds but progesterone. I still take the essential things like magnesium, D3, b12, turmeric, coq10, and probiotics. It’s a struggle, but I’m managing. (Leslie, 45 years old)
I was bit when I was 10 in a small-town Cortez Colorado. My family didn’t know I had the tick until I got sick with a high fever. It was found deep in my head at that point and 1st grandpa tried to burn it out then they took me to a doctor in small town where they did remove the tick but never treated with antibiotics afterwards. This disease has been wreaking havoc in my body for the last 35 years as I’m 45 now and was just recently diagnosed in June 2017. Doctors just kept telling me I was born with a degenerative disease. Bilateral knees and hips are bone on bone, lower spine L4 L5 are bone on bone and my spine is starting to curve because of this. I wish I could afford stem cell replacement and all the supplements I need to get through this disease and it would help if CDC would step up so that insurances would help cover the costs. (Michelle, 45 years old)
My name is Sara and my story begins in the late 70’s. I grew up in Florida and was visiting my Grandparents during a hot summer in the mountains of North Carolina. •Age 8 or 9, I was traumatized by my Mother and Grandmother coming toward my head with a burnt match to remove a tick. Age 11, I was hospitalized for what they thought was Hepatitis B, shortly following that repeated episodes of strep throat and bronchitis. •Upon reaching about 13 years old, I had my tonsils removed. •Age 15, I began to show signs of depression and anxiety. Aside from the hormonal teen changes. Age 18 & 19, It was senior year, and I’d become deeply sensitive, more depressed and attempted suicide twice. I have struggled with psychiatric problems ever since. Age 20, my body began to deteriorate with early signs of arthritis. Degenerative disc disease and some Doctors diagnosed me with Fibromyalgia. •Age 30 I began having gastrointestinal problems with an endoscopic procedure at age 37. •By 40, I’d seen well over 50 Doctors, Specialists, Hospital visits, Surgeries all without an answer to my illness. I have struggled everyday with overall malaise and pain, yet still with a smile on my face. Today, I write to you without question, I have Chronic Lyme Disease, Bartonella, mycoplasma, EBV, Severe Depression/Anxiety, Degenerative disc disease, cervical subluxation, widespread inflammation, Fibromyalgia, neuroborreliosis, pre-dementia, balance problems, unable to stand for more than 1-2 minutes, vomiting, TMJ, rashes, vision changes, auditory sensitivity, fevers, sweats, biotoxin illness, mold/microbes, adrenal dysfunction, elevated cortisol, flu like symptoms on a daily basis, urinary incontinence, gut dysfunction, dizziness, heat intolerance, gluten intolerance, costochondritis, muscle loss, weakness, insomnia, ADD, digestion problems, sinus infections, severe fatigue, and many, many other random strange symptoms. They come and go inconsistently and without notice. •Age 46, I’ve been unable to work for almost 16 months and DENIED for Disability. I had to file bankruptcy last December and now have almost nothing left of what I’ve saved for retirement. Most of the Doctors and treatments aren’t covered by insurance, so Family has put me up, my Aunt/Uncle and now my Mom providing a roof over my head. I have lost everything. I’m single and stuck being at home, alone while the world exists outside my doors. It’s very sad. Please… realize this is a growing EPIDEMIC of massive proportions and something needs to be done IMMEDIATELY! For all who have lost someone to Cardiac Disease, Alzheimer’s Disease, MS, ALS, Parkinson’s Disease…it’s possible they died painfully and slowly by the overload of un-diagnosed Borrelia Burgdorferi, the killer Co-infections, in addition to bacteria, microbes, fungi, and other perplexities causing multi-organ and systemic failure. LYME IS A CRIME, CRUELTY TO THE INNOCENT, and INJUSTICE TO ALL. The CDC & FDA need to be held accountable for unreliable testing, under funded research, uneducated medical professionals, falsifying information, not recognizing Lyme as a Chronic Illness, spreading this horrible disease via blood transfusions as there is no regulation or screening in place for blood donations. (Sara P., 46 years old)
I have a very supportive husband – that has always helped I was sick for five years before I was properly diagnosed – it has been a very long three and a half years of antibiotics and injections Depression, anxiety, and time off work – much support needed (Marybeth, 47 years old)
I don’t have enough time nor space to put my story in here, but I do want you to know that it took me 8 years to get diagnosed. Doctors have treated me like an addict wanting another fix or told me I need psychiatric help and told to go on anti this or anti that medication. No doctor would listen to me and not one cared about the amount of pain I was in every single day – that is until I met my current doctor. Thank God for her because without her, I don’t think I would still be here. I was sick and bedridden when she accepted me as a patient. I am now able to work full time. (Melissa, 48 years old)
I am a gardener in Michigan, I developed difficulty breathing which I thought was caused by thyroid meds…but no…I went to a regular doctor, they tested me for everything including lyme disease, which came back negative They said I was in perfect health, then I developed severe insomnia, the hospital put me on Adavan without telling me it was very addictive and not a sleep aid, my PCP said I had anxiety, put me on Prozac and Adavan, the sleep clinic put me on a CPAP machine…they were all quite pleased with themselves, but I was still very sick…my integrative doctor did a Western Blot Test and told me I have lyme, and put me on antibiotics, and I am tapering off everything else. My business is in the tank because of all this b.s. total nightmare for last six months…hoping things get more normal soon… (Raquel, 49 years old)
Been over 15 years. Finally diagnosed last year! (Leslie, 50 years old)
I have had it since 1989. It sucks. Can’t function well. (Viki, 50 years old)
For years, I lived with many symptoms of Lyme, and never knew I had it. I went to lots of doctors who would just put me on meds, without actually testing me for Lyme. My joints began being affected, where they were literally being eaten away. I had a knee replacement at age 35, four foot surgeries, a neck fusion, I’m currently in need of a shoulder replacement, I have severe arthritis in my back and hands. I finally went to a naturopath because I was desperate to find out why this was happening. I was diagnosed last year, at age 51. We believe I was born with it. The doctor wanted to treat me with several therapies, but couldn’t actually cure me. I looked into bee venom therapy after hearing many success stories, particularly Ellie Label’s, and am currently doing that with great success! (Christi, 51 years old)
I was bit by something while sleeping on a family camp trip when I was 12. We thought it was a spider bite. I started having issues by the end of that summer. I was exhausted all the time, cold, went from extroverted to introverted, headaches, depression and anxiety, I just totally withdrew. By the time I was 17, it was really bad, more symptoms and the depression had me almost constantly in a suicidal state. I used to plan how I would do it. That was the start of 35 years of seeing therapists, psychiatrists, all kinds of psych drugs, outpatient therapy groups, plus different family doctors sent me to all kinds of specialists, but all the tests would come back positive, so back to the psychiatrists. When I hit my 40’s things were progressing and I couldn’t stay awake during the day, dropped out of volunteering, had to quit working, etc. I had a very bad reaction to a new psych drug after taking it one time, and told my doctor enough was enough. All those drugs did was make things worse. My doctor ran a methylation test because she said that could cause depression. It came back I was undermethylating. She basically gave me the test results and said she didn’t know anything about it, so I had to find someone that did. Not an easy task. I did find one doctor in Texas who couldn’t treat me unless I went out there, but she did do a 15 min Skype consult and told me she was from Michigan originally and if it were her, she would get tested for Lyme. I didn’t know anything about Lyme except it was caused by a tick bite. I really thought the test would come back negative. It didn’t. So my family doctor once again handed me the Lyme test results and told me I was on my own, but to keep her informed……great doctor!! I no longer see her. I honestly felt relieved because I thought, “Well now I know what it is so I can get treated”. Little did I know at the time that wasn’t going to happen. I have had a second, different Lyme test by an LLMD and that came back positive also with a couple of co-infections. It has been over a year since I found out I have Lyme and I am 52 now, so I have had it for 40 years. I tried the antibiotic route first, but my system doesn’t tolerate them and with one I actually started losing my vision. Since then, I have been looking for other treatments, but I can’t afford the expensive ones, so I found Dr. Rawls and started watching a few of his videos. I have started reading one of his books, but reading is extremely hard for me. I either have to keep rereading the same paragraph because I can’t comprehend what the person is talking about, or I forget very quickly. After listening one night to a webinar that he did, I decided to try his herbal program. I was just starting to have slight success when my blood pressure shot up. I am currently taking a low dose blood pressure medication and once I get the ok from my doctor, I am going to try it again at a slower start. I am in pain almost 24/7 from a botched hip replacement surgery, so we weren’t sure if that is what is spiking my BP or the herbs. Right now, I am just trying really hard to stay positive, meditate, get through my intense PT sessions and pray that if this herbal program doesn’t work, I can find something else we can afford to try. Plus, I have to have my college-aged son tested since I found out it can be passed on through pregnancy. He has a few odd things going on, so I’m not sure if it is Lyme or if a change in diet would fix them. (Teri, 52 years old)
Way too long going back 27 years. It all started with a recurring sore throat and swollen glands every few weeks. I sought medical attention, tested for Lyme, only to have a positive ELISA and negative Western Blot. No treatment given. (Marcia, 53 years old)
I was diagnosed with fibromyalgia 15 years ago. Went to every kind of doctor, had tests for all my symptoms and never got any real answers. Had surgery for chronic back pain which did nothing for my pain. Taking tramadol for years as it was the only thing that seemed to help pain and allow me to function. Still take no it. I had of quit my job as physical therapist because of pain and fatigue. Finally went to Lyme doctor and got tested. Diagnosed with Lyme and began treatment in January. Haven’t felt improvements yet but have been told that because I have had it for so long, it will take a long time to feel better. About 18 months. Supplements aren’t covered by insurance and they are very expensive. I have memory loss and trouble concentrating now. Migraines a couple time a week. Fatigue is horrible and body pain and stiffness can be debilitating. (Susan, 53 years old)
Part of my story is smattered throughout here. I’m too tired to write it out. If I had cancer, I would have a plan of care. There would be social workers to help. The American Cancer Society would help. I have a tick borne infection. I had tularemia, bartonella, borrelia, salmonella, & 2 other bugs. I’m left with Bart & borrelia. I was told I need to accept that there are no cures for Bart. (30 different species, assays for 3, tick borne bart: chuck out of luck). I’m in bed >50% of time. I’m well educated and know neuroimmunology & infectious diseases. I lost my life 4 yrs ago. I don’t have a disease, I have a tick borne infection. (Bridgette, 54 years old)
I used to hike. I had a red rash on my forehead and a fever. I was misdiagnosed with an infected insect bite and given CIPRO. It took 2 years and 28 Doctors to be properly diagnosed. They don’t look at the body as a whole. Many treatments, antibiotics, now seeing a Naturalist who believes in functional medicine. My blood work always points to leukemia. I’m followed by an Oncologist every 3 months. I currently see 4 doctors. (Kim, 54 years old)
I have been infected twice, in 2008 and 2013. First, a deer tick, second a Lone Star STARI Tick. I have almost died many times, was in remission for four and a half years, and now I am living through hell again after being reinfected, and it triggered my previous Lyme Disease out of remission…I have no money to work with this time and no doctors care enough. I live my life with extreme hope, faith and love. I don’t wait around for a cure. If people see me, I am faring well, if they do not, I am sick as hell. I love everyone and am most grateful for my love and support…the CDC are a bunch of anal crooks that should be prosecuted to the fullest and the government and insurance companies are no better. Too many people, wonderful people have suffered, committed suicide and have died…Thank you for your time. (Marti, 55 years old)
I have had Lyme disease since 2013. I am now taking medication for heart issues. I live with stiff joints and pain. (Dawn, 55 years old)
Misdiagnosed for 22 years of a chronic daily migraine. Probably got it when I was you, 40 years ago. (Kimberly, 55 years old)
Five years and diagnosed this last month..still trying natural therapies, as I’m not able to get antibiotics. (Ann, 56 years old)
12 years of extreme symptoms and many failed treatments. I never saw a tick or experienced a rash. I was sick for 3 years before finally testing positive for Lyme. I have had several pic lines as well as thousands of dollars of alternative treatments. (Steve, 56 years old)
5 years and diagnosed this last MTh. Still trying natural therapies as not able to get antibiotics. (Ann, 56 years old)
Jillaube@hotmail.com (Jill, 56 years old)
Got bit in April. saw rash in mid-April. didn’t do anything. shoulders got painful. Went to chiropractor .and still felt bad. Told him about bite and he made me go get test. it came back post for Lyme and rocky mountain fever. But sometimes I feel as though I had before due to some weird symptoms I had. Don’t really know. I was tested in 1998 and didn’t have. Had aplastic anemia. Very severe and survived that. (Robin, 56 years old)
I was diagnosed after I’d been going to support group meetings to support my brother for a year. I kept denying the symptoms, but finally had to admit that I probably had Lyme too. Got tested, had 5 or 6 co-infections with it, and started boosting my immune system with herbals, supplements, and essential oils. Started homeopathic treatment (DesBio) 16 months ago and am very close to remission now. I host a local support group, and so does my brother. Trying to educate people. (Lori, 57 years old)
I was hiking in Colorado with 2 friends in August 1997 and think that was when I was bitten. I developed symptoms in October/November of that year but I lived in Baltimore City. My husband rushed me to the hospital when the pain in both my legs was so unbearable that I could not walk. No bullseye, but a rash. Drs. could not figure out what was wrong with me and did not equate my travels in CO with what was happening now. I had test after test until after a month I was diagnosed. Had to learn how to walk again. Missed 6 months of work. Been a long battle but moving to country and a healthier living style make a difference. (Pamela, 58 years old)
Nightmare. (Sandy, 58 years old)
I was bit in Orlando Florida on July 10, 2012. Three days later I became out which led into spinal meningitis in the fight for my life another 2 1/2 years before I was able to return to work. (Terri, 58 years old)
I had the start of a uti and couldn’t get into a doctor because it was late and dr closed early for 4th of July weekend. Got home and found a bullseye on my waist. I had a headache, 101.6 fever. Went to clinic next day and they put me on dox for 21 days. Two days in and feel like crap. Sweat so much I have to change my clothes several times at night and during the day. The headache has gotten better and the uti is as well. Still waiting on culture to see where the uti stands. (Mary, 59 years old)
A 35 year old single mother of 3 in nursing school and working as a waitress. The symptoms were insidious and I did not see a tick on me or a rash so I thought anything I was feeling was due to stress or just a bug. Not one to run to the doctor for every little thing I pushed through, until one day I couldn’t stand any longer or write or remember, drive, cook, shop, walk, I somehow made it through that last semester of school, I honestly do not know how and after a year of iv, oral and injectible abx I improved. 7 years later a whole new set of debilitating symptoms came on, again slowly. I had it again, perhaps another strain or I was re infected another 8 months with high doses of oral antibiotics while caring for a 2 year old. You see I did become well enough after that first bout to remarry and have another child but after 8 months my liver enzymes elevated and the doctor did not know what to do with me. I have lived with pain every day since. A few years ago very different and very scary symptoms happened by this time I’m already dealing with cardiac and nerve damage. I was told I must have been bit again as I had babesia this time, that was added to the list which already had erichliosis, borrelia, bartonella and lyme. I’ve had 4 rounds of antimalarial protocol since and I’m stll not well. To date, I’m guessing I’ve spent over $100,000 that I didn’t have and I’m now with a new doctor with positive lyme tests, many negative brain scans etc. Nothing but tickborn illnesses are ever found and I’ve been to so many doctors and had so many tests. So, again I am going to be on another regime of abx, etc. and I’m terrified. My body can not handle any more. (Colette, 59 years old)
I was bit by a tick in June 2007 while at a family reunion in Tx. I found the tick, and still have it. 14 days after finding the tick I felt like I had been run over by a truck, every joint in my body hurt, I had a severe migraine & brain fog. Because I didn’t have the bullseye rash and I didn’t test positive the first time I was tested I was not given proper treatment. I was told by 4 Drs that you can’t get Lyme from ticks in Texas. In 2009 I found a Dr who’s wife had Lyme. He started me on a 6 month rotation of antibiotics. I had severe herx reactions. Later I developed arthritis in my right knee. The next year I was dxd with severe adrenal fatigue, one step away from adrenal failure, and told my hormones had bottomed out. I was put on a steroid compounded for me as well as 3 compound HRT med. Those treatments barely made a dint in my symptoms. I tried homeopathic treatment, severe diet changes, Bioresanance treatments ( which helped somewhat). Then I started some new products Reliv made and got major improvements. ( if you want to know more about Reliv you can contact me through https://cursestoblessings.reliv.com ) I came off of all of those expensive meds and started getting my life back. I am not symptom free, but I am staying up right and moving forward. I have had some procedures for the arthritis in my back, and still looking for answers for that. I find exercising gives me the best results in that area. Recently I’ve gone off of sugar and started using stevia. In the last couple of weeks I’ve developed vertigo. I recently read that stevia can kill Lyme, I’m wondering if I’m having a herx reaction. (Vicki, 59 years old)
Pre Lyme: swimming daily, working 12 hour days, cycling 80-100 miles per week. Lost 50 pounds over 1 year period. Taking supplements & levothyroxin 0.125. Running 5 K, & mini triathlon. Eating healthy & very active. No illness to speak of for many years. Normal aches & pains when I over do but nothing lasted abnormal. Tick bite found on Back of head /neck when returning from Maine trip. Had been bicycling & hiking all up & down coast of Maine. First started with lymph nodes swollen infected tick bite. Headache constant with no relief. Took 10 days doxycycline as medically recommended. About a month later began: heart palpitations at night- ekg normal. Lab neg. ANA& Western Blot screen. aches, pains, headaches feeling lethargic- a 10 day round of Bactrim possible Sinus infection. No results. Within a couple of weeks started constant aches in migrating joints, palpitations, chest pain through to back, sleeplessness, headache daily back of head right occipital area. (This is where the tick was). Another 2 weeks of doxycycline. Still riding bikes, swim & fit camps. Chest X-ray, EKG & holter monitor negative. NP just wants me to take neurotin & go away. Soon I had two episodes of unexplained problem after bending over to get something off the floor my eyes began to flicker like an old time film, dizziness and nausea followed. I thought this was fatigue & sleeplessness because it only happened a couple of times. Started spending time alone because of irritability. Still Riding bikes on some pretty days, swimming & doing occasional fit camps. According to lab work-Epstein Barr shows past infection, beg ANA. All else normal. palpitations, panic attacks, emotions & mood swings are raging. Fatigue, joint pain & cold weather slowed me down from bike but still trying to swim when I can. Can no longer do fit camps I now have new pain- spine contractions is the only way to describe this. Lasting through the nights. Tried natural relax supplements & even alcohol to relax- wrong thing to do! It was so much worse. depression, some outburst, going out of my mind with joint pain migrating all over & headaches are everyday & 6-9 on pain scale. Still trying to swim but cannot do cycling. To clinic-general lab work done. (87 hdl) all looks pretty good. Nothing way off or conclusive. Doing some travel- going to self help (emotional boot camp) class in Dallas. A lot of hard work emotionally but made me realize that I was taking care of others but not me. A lot of emotional drama at home. Depression & trying to build myself back. Migrant in pain, stabbing spine pain from head to tail bone. Same migrating pain. Saw naturopathic physician started juicing, coffee enemas & supplements for inflammation. Unable to function with foggy brain. Can’t remember people’s names. Hurt constantly headache & migrating joint pain. Starting to isolate so I don’t go to work. So embarrassing not to know people’s names when I see them all the time & they have been in my life for a long time. Can’t handle stress so I had to leave my job. Pain is unbearable! Some nights I am so tired & hurt so bad I ask God to take me home. I am juicing, coffee enemas(helping with pain) & organic diet. no spine contractions, still migrating pain & headaches. Palpitations & Right chest pain. Hard to get breath at night from pain, Sub clavicle pain, Neck pain & Elbow pain lasting weeks now. Chest X-ray negative. Went to see naturopathic dr. & Hometown clinic same pain & symptoms. Still juicing & coffee enemas & organic diet. . Can’t exercise & don’t want to leave the house. Gaining weight. ekg (negative). Schedule appt with another Naturopathic physician. Nobody listening! Money is driving medicine. No changes. Spine hurting constantly. Wearing a back brace to help with pain. Can’t see new doc for 6 weeks. Got to new Dr office & they tell me nurse practitioner is seeing me. Office visit $500 She at least listened to me. Ran $1500 Worth of Blood work. Some out of whack but wants to do a more intensive lab next time. Started me on more supplements and shakes. I told her this entire physical history & told her I had researched & think it is all due to Chronic Lyme. She did not agree. No change since last visit to NP at dr Haase office. More lab. Igenex test run & more test $1000 in lab this time $300 visit. Changed meds thinking it is thyroid related. Wants me on natural thyroid 3 x day & natural anti-inflammatory supplements. I think I am dying! Chest pain, sob, face on fire, sweating profusely. Daughter & I are in Atlanta & I can’t even walk a few blocks! 😭😭. I can’t find any way to get comfortable. Called the NP & got no response. Something I am taking is causing me to die! Stoping all meds! Still taking my Regular supplements. No rest! No relief. Even though I am against putting anything unnatural in my body, If I had pain medicine I would take it today! Leaving early from trip to go home😢😢. Lab showed several bands of Lyme & many other abnormalities due to Lyme. Finally she said it! This is Lyme & all the symptoms are indicative of Lyme. Changed thyroid meds back & started 4 weeks of IV therapy (vit C & glutathione) along with the detox & diet(weight still going up). Liver enzymes very elevated at this time. Detox more! I can feel my body decaying. Anti inflammatory diet not helping. Pain at level 10 most nights! Mentally frustrated and exhausted with all this. Dr. tells me he sent my lab to Lyme clinic at Vanderbilt & the head of the department says I do not have Lyme! What??? Seeing neurologist & rheumatologist now. I’m tired & mad & can’t stand to be around anyone! Saw neurologist & dr is a very nice man. Listened but absolutely told me he knows nothing about Lyme Disease. Wants me to see infectious disease doc & rheumatologist ( already scheduled) Rheumatologist: God bless him! After two thorough exams by the dr & his resident he ask if I had traveled north….. he said this is not a Lyme that is seen very often here in TN. Stated It is very common up north. Praise the Lord! He does not think I am crazy! He is sending me studies & research papers his best friend, Dr. Sam at Boston Mass. (Angela, 61 years old)
I don’t know how long I’ve had Lyme, I’m 61 and can’t remember being symptom free from the time I was 18. (Emma, 61 years old)
I got bit in the thigh and never saw the tick. I woke up with a huge bullseye rash. I thought it was cellulitis. I took 2 weeks antibiotics for cellulitis. The joint pain started after that. I went through 10 years of horrible pain and sleepless nights and was Dx fibro. Finally when my husband came down with RMSF, I was diagnosed with Lyme related bacteria. I responded almost immediately to treatment, but if I’m off antibiotics for 3 weeks, the pain returns. Under treatment by Tick Borne Illness Doctor. (Karen, 61 years old)
I found out I had Lyme’s disease when I watched my daughter how she acted, she had no energy, a lot of sickness in bed and I suspected that’s what she has! So, we got her checked, we send the blood samples to California and she tested positive. So, once she tested positive, I decided I feel the same way I just don’t express myself the same way, kind of just pushing it out of my mind so I got tested and was positive also. After that my husband got tested two and he tested positive! We do not know where we got the bite from, so I am thinking it’s contagious!! (Betty, 63 years old)
I got stiff legs, I couldn’t even get in a car. I went to 13 different specialists, they all treated me with their antibiotic poison. There was a time I didn’t have enough energy to even walk, or do my normal chores in life. Two chiros helped some with supplements. I’ve been suffering for more than five years. (Nancy M., 64 years old)
My Lyme was diagnosed in 2012 and had been around awhile, I was treated with Doxy and when condition stayed the same I had Fibromyalgia and been figuring that out. Few weeks ago diagnosed with active Lyme that had been around for a year or so – new neuro thinks the lump ate my small nerves to my heart carditis – just had spinal tap wait to check to see if Lyme is in my brain. (Nancy, 64 years)
I got it from a tick bit in Switzerland in 1969 on a family trip around Europe. I had a short episode of flu but no rash. Over the years I’ve battled a recurring fever with flu symptoms starting just after my daughter was born in 1973 . The fever continued every two weeks that was eventually treated with a round of Keflex. I’ve had belly pains all of my life and eventually ended up with a bowel resection in 1995 for diverticulosis. I was tested several times for rhemotoid arthrtis but was alwys negative. Doctors said I had osteoarthritis not rheumatoid. It was difficult to keep up with the work load of nursing so I went to one on one private duty nursing. Eventually I got to where I could not open medication bottles or turn my patient. Now I’m on disability waiting the 12 months for medicare. My husband came down with ulcertive colitis and my son with Crohn’s disease. I have lots of questions wondering if my lyme made them sick too. Through an lichen scloerosus group one member suggested I may have lyme so I was tested and have three positive lyme antigens so doctors can’t or won’t or what ever agree that I have lyme. Not much can be done till I find a lyme doctor willing to diagnose and treat me in Tennessee and rule out co-infections as my coplasma is also low grade positive. (Rogene, 64 years old)
I had two bullseye rashes at the same time 24 years ago, but the test came back negative, so was told that I didn’t have it. Had pain & swelling in one knee for 8 years, was told it was arthritis. Developed Guillain-Barre after 13 years untreated. Lyme was 11 at that time. Was good for a year after treatment, all symptoms were gone…but then it came back. No test since has ever been below 5, last one was up to 8, plus supposedly showed new infection. Must fight to get the antibiotics that I need, to just take it down a number or two! (Daisy, 64 years old)
At 50 I started with menopause symptoms, and I just started getting sick, then sicker. My heart raced so I couldn’t sleep, and so then I would sleep all day. I saw 26 doctors in 12 years, even a physiatrist, and they all said “the test show nothing is wrong with you.” During those years I can now remember thinking about ending my life, I had lost everything I was, now all I did was sleep. We moved 500 miles away and I started looking for help in a new state. I found a great LLMD and her sons had Lyme so she moved and I found another ND that was starting to treat Lyme patients, we have both been learning, and I am slowly coming back. If I could only get my brain back on track. I feel like I’m 95, no energy, and I sit too much and have no drive. I hope that with all the naturopaths that are treating patients they can all come together and find the best treatment soon, so people don’t have to suffer. (Pat, 65 years old)
I think I contracted it while living in Costa Rica. About 1 year later, I had to give up cleaning as I was too tired. Although being treated with 5 weeks of intravenous antibiotics, still a problem. The infectious disease doc said to live with it. (Jerre, 72 years old)