June 30, 2017

Lyme Disease

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

  1. Lyme Disease Awareness Group (19,432 members)
  2. Lyme Disease UK Discussion Group (7,183 members)
  3. Lyme Disease And Co-Infections Group (5,776 members)
  4. Auto Immune Disease & Lyme Disease: The Truth And The Solution Group (5,299 members)
  5. Bee Venom Therapy For Lyme Disease Group (4,590 members)
  6. Christian Lyme Disease Support Group (4,244 members)
  7. Lyme Disease Group (3,776 members)
  8. Lyme Disease Survival & Wellness Group (3,693 members)
  9. Lyme Disease Support And Wellness Group (3,521 members)
  10. International Lyme Disease Awareness And Support Group (3,244 members)
  11. Lyme Disease-All Treatments Discussed Group (2,449 members)
  12. Tick Talk Ireland (MS, CFS, ME, FMS) Group (1,958 members)
  13. Lyme Disease Awareness 2 Facebook Group (1,844 members)
  14. Lyme Disease News Now Group (1,828 members)
  15. Lyme Disease Rifers Facebook Group (1,640 members)
  16. Lyme & Chronic Lyme Disease Awareness Group (1,444 members)
  17. Lyme Disease Support Group (913 members)
  18. Lyme Disease Cure Discussion Group (494 members)
  19. Lyme Disease Support Group (459 members)
  20. Oregon Lyme Disease Group (400 members)
  21. Lyme Disease Healed Group (379 members)
  22. Utah Lyme Disease Support Group (343 members)

Other Lyme Disease Support Groups And Forums

  1. 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?

  • 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, 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/pain, shoulder tension/stiffness/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/stiffness. Hands- difficulty bending/grasping. Stomach pain/cramping, decrease in hormones, hot flashes/ night sweats, severe nausea, low back stiffness/pain. Sacroiliac joint pain, hip pain, bloating, muscle deterioration, loss of strength/weakness. Sharp joint pain/stiffness/aching, knee instability/pain, swollen knees (especially after walking). Loss of some balance, calf cramping, ankle pain/weakness, Raynaud’s Disease, Fibromyalgia, Chronic Fatigue Syndrome, confusion. Sometimes difficulty speaking/carrying on 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)
  • 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, head aches, nerve pain, gait problems. (Michelle, 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)
  • Large bulls 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)
  • Heart palpitations, fever, extreme fatigue, tremors, dizziness, brain fog, lowered body temperature and extreme cold spells, weakness, rash, unclear vision. (Jamie, 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)
  • Joint pain, muscle aches, tingling, muscle twitching, cognitive. (Jen, 40 years old)
  • Dizzy, off balance, poor memory, neuropathy, serious GI pain, autoimmune dx’s, severe itching head to toe, tinninitis, burning sensations on face, onset of a lot of food allergies, bad depression/anxiety, interstitial cystitis, more to name. (Kristen, 44 years old)
  • Joint and muscle pain. (Chris, 45 years old)
  • Too many to count. (Kim, 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)
  • 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)
  • 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)
  • 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)
  • Fatigue, migrating body pain, stiffness, migraines, ringing ears, brain fog, memory loss, difficulty sleeping. (Susan, 53 years old)
  • Advancing arthritis and lots of joint problems, GI problems, palpitations, skin rashes, brain fog, fatigue, etc. (Julie, 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)
  • 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)
  • Extreme fatigue and migraines/daily headaches, brain fog. (Sue, 57 years old)
  • Severe Rheumatoid Arthritis. (Pamela, 58 years old)
  • Nervous system messed up, 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)
  • 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)
  • Fever, chills, sweating, headache, fog brain (if that’s a thing), fatigue stiff joints and rash. (Mary, 59 years old)
  • Encephalitis, arthritis, neuropathy. (Helen, 60 years old)
  • Numbness, stiff joints, rash, fatigue. (Sue, 63 years old)
  • Fatigue, overall body aches, brain fog, weight gain. (Deborah, 64 years old)
  • Much pain in legs, shoulders and back. Fatigue, different infections, memory failure, some breathing issues. Stiffness. (Nancy M., 64 years old)
  • Pain, concentration, forgetfulness, migraines, joints arthritis, passing out. (Nancy, 64 years)

Lyme Disease Facts

What are some interesting facts about Lyme Disease?

  • 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, so no treatment protocol is the same. (Stephanie, 26 years old)
  • That most doctors are not knowledgeable concerning lyme. (Rachel M., 27 years old)
  • It’s easy to get and hard to treat. It mimics so many illnesses: MS, ALS, Parkinson’s, Rheumatoid Arthritis, etc. It isn’t just Lyme, it’s a multi-systemic infection (viruses, fungus, parasites, toxicity from heavy metals, mold, candida, etc.) (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 two different doctors, whom both went to medical school and have degrees mounted on their walls, can tell me two completely different things. Lyme disease is confusing!!! (Tiffany, 32 years old)
  • It morphs(from one symptom to another) daily, weekly and doctors think your crazy. (Danielle, 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 know 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 and antibiotics by forming cysts and biofilms. (Sarah, 37 years old)
  • When I get the flu, my temperature doesn’t rise above 37 celsius, although I have clear feverish symptoms. (Sorana, 37 years old)
  • Most people don’t get a bullseye, or remember a tick being in them. (Serena, 39 years)
  • You can get lyme disease from other bugs, not just ticks, can be passed in utero, can be treated early on- if later it becomes harder to treat. (Kristen, 44 years old)
  • How hard it is to be diagnosed! (Chris, 45 years old)
  • People who got Lyme through a dirty vaccines 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)
  • 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 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, a political hot potato. (Raquel, 49 years old)
  • I find it interesting that there is allegedly no lyme in my state. (Cynthia, 50 years old)
  • Its everywhere!! (Shari, 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. I even had one doctor that wanted me to check into the mental floor of a hospital for two 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)
  • 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)
  • 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)
  • 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 doctor’s sheepskin. Omg! (Gill, 57 years old)
  • You don’t need a bullseye rash. (Sue, 57 years old)
  • Nothing. (Regina, 58 years old)
  • Deadly. Not enough doctor and insurance coverage. But we have so much wrong treatment for other infections are covered if one can find a doctor. (Sandy, 58 years old)
  • No one knows the truth. (Terri, 58 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)
  • It’s hard to diagnose, 80% are fine if they are initially treated after the bite, there is no perfect formula for treatment. (Helen, 60 years old)
  • Doctors have no clue about Chronic Lyme. (Sue, 63 years old)
  • Similar to syphilus, it’s hard to diagnose, and hard to eradicate. (Deborah, 64 years old)
  • It takes over your life, doctors don’t know how to treat it, they just pump you up with antibiotics. 😥 (Nancy M., 64 years old)
  • I can’t treat myself – had to leave work- no more gardening or yoga. (Nancy, 64 years)

Lyme Disease Pain Management

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

  • I suffer from constant joint pains and aches of which nothing- not even previously prescribed opioids- had 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 HyperIce ball to use as a pain reliever at home. I see a physical therapist, because I have to retrain my body how to function. (Stephanie, 26 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)
  • It plays by its own rules. (Kitsune, 30 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 isnt a pain relief. Headaches I use amitryptiline with clonazepam nothing else works. For daily pain fentanlyl and percocet. For severe pain hydromorphone. Medical marijuana cause great pain. (Danielle, 34 years old)
  • Very mild migrating pain. No pain management needed. (Tiffany, 32 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. (Sorana, 37 years old)
  • Pain is not my major issue. (Jamie, 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)
  • Neuropathy, CBD, THC helps pain. (Kristen, 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)
  • 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)
  • 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, alkaseltzer does the job, insomnia aided by mineral supplement called mintran by standard process- I take four at bedtime and two more at 3am…kefir helps digestion and absorption. (Raquel, 49 years old)
  • The 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)
  • Magnesium, B12 in addition to Tramadol and Savella. (Shari, 50 years old)
  • Surgeries, 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, CBC oil. (Susan, 53 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)
  • 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)
  • Tumeric. (Ann, 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)
  • Swimming helps and eating healthy. Tumeric in almost everything I eat. (Pamela, 58 years old)
  • No drugs. (Regina, 58 years old)
  • The pain is unbearable. (Sandy, 58 years old)
  • Excruciating pain with minimal relief. (Terri, 58 years old)
  • Headache the worst. Taking Ibuprophen and CBD oil. (Mary, 59 years old)
  • Lots of pain. Treat lyme, and get active. (Helen, 60 years old)
  • After 20 years, I am better, but my life was changed forever. I have to 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 picc line for 21 days. 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 Babesiosos. 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)
  • I use acupuncture, since antibiotics are no longer effective. (Deborah, 64 years old)
  • Tons of pain, constant. Some days are good, some bad. (Nancy M., 64 years old)
  • Diagnosed 2012 – Diagnosed recently June 2017 going to a neurologist – when I stand my BP dips 40 points. (Nancy, 64 years)

Lyme Disease Difficulties

What are the hardest aspects of living with Lyme Disease?

  • The pain, and knowing that it will never fully go away. (Nora, 22 years old)
  • The fact that the CDC and FDA refuse 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)
  • 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 different 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 have to so I can have health insurance. (Michelle, 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 living at all. At this time my jaw pain is extreme so I am unable to eat. I live off of ultra meal with protein. (Danielle, 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. (Sorana, 37 years old)
  • Being unable to live life like I used to. The expense of treatment. (Jamie, 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)
  • Playing with kids, working. (Jen, 40 years old)
  • Not living a quality life, feeling like just existing, wondering if I’m going to make it. (Kristen, 44 years old)
  • The unknowns. (Chris, 45 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 would’nt 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 also a night shelter and drop in day center in my community, so many people with Lyme have to live in abusive situations bc 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)
  • 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, I’m very tired all the time, losing weight and muscle, I can’t remember things or think very clearly.. I’m very tired all the time…it sucks… (Raquel, 49 years old)
  • The lack of information that the general public has regarding Lyme. The conflicting information that is found about Lyme Disease. (Cynthia, 50 years old)
  • No one believes it is real! (Shari, 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 any more. I battle depression on a daily basis. It has robbed me of good times with family and friends, and it robbed me of being able to get in more than one year of college so I could have a career. (Teri, 52 years old)
  • Pain, having 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)
  • The lack of doctors who treat it, who take insurance. I have none in Arizona. Zero! (Lori, 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)
  • 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)
  • Pain, fatigue and insomnia. (Steve, 56 years old)
  • Not being able to have gainful employment, no meds and ostracization. (Gill, 57 years old)
  • Trying to push through and not giving up. Making people understand what we go through. (Sue, 57 years old)
    Daily pain and unexpected- Wanting to do things like hiking ( which was how I contracted Lyme’s 20yrs ago) and can not. 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)
  • Balancing life. Finding appropriate treatment. (Helen, 60 years old)
  • Extreme fatigue, stiffness and people think it’s in your head. (Sue, 63 years old)
  • Lack of energy, not able to do everything I need to do in a day. (Deborah, 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)
  • Never being able to plan – wake up and see how you feel – Dr to Dr expensive. (Nancy, 64 years)

Lyme Disease Advice

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

  • 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 have to 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)
  • 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)
  • Hang in there! Some days will be better than others. (Danielle, 35 years old)
  • Your not alone, join support groups on Facebook or elsewhere to discuss and share information, thoughts, feelings, encouragement. (Sarah, 37 years old)
  • I don’t have any :(. (Sorana, 37 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)
  • Don’t give up looking for answers and finding the truth. It took me six years and at least seven doctors to find my diagnosis, and start getting better. It will get better. (Serena, 39 years)
  • Get second opinions. (Jen, 40 years old)
  • Hold onto HOPE, some days it’s all we have. (Kristen, 44 years old)
  • Keep advocating for yourself. (Chris, 45 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 because of my Lyme. (Kim, 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 they 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)
  • Explore all your options for treatment, talk to your friends and family, don’t give up! Yes. (Cynthia, 50 years old)
  • There is hope to feeling better. Find an LLMD that understands the disease and co infections. (Shari, 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)
  • 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)
  • Join support groups online or near your town. Get in touch with another Lymie, it is so very important. We together, are our greatest strength, courage and encouragement. (Marti, 55 years old)
  • Research. (Ann, 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! Critical think everything related to this pile of mis-information… (Gill, 57 years old)
  • Keep trying. (Sue, 57 years old)
  • Be patient​ with yourself. (Pamela, 58 years old)
  • Keep your faith. (Regina, 58 years old)
  • See a good Lyme doctor that has cured, or has in remission at least three patients. (Sandy, 58 years old)
  • You can get better, I have. Whether it’s in remission or cured, it’s possible. (Terri, 58 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)
  • Surround yourself with people and practitioners who support you. You don’t have to put up with negativity. (Helen, 60 years old)
  • Don’t believe doctors, you know how sick you are.. Get to a LLMD. (Sue, 63 years old)
  • Don’t let it define you, try alternate therapies, find a reputable LLMD, exercise. (Deborah, 64 years old)
  • I have no encouragement at this time, 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)
  • Today nothing – read all you can, join groups- what works for one person doesn’t work for all. Keep moving, you will loose it if you don’t use it. Hurts! (Nancy, 64 years)

Lyme Disease Diet and Exercise

What’s been your experience with diet and exercise?

  • They do little to help and at times can cause a worsening of symptoms. (Nora, 22 years old)
  • The more exercise, the better. It’s MUCH more easier said than done. It’s 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)
  • I haven’t started a particular diet at this time. I have heard certain diets will help, but have no experience at this time. (Rachel M., 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)
  • Diet is hard. (Kitsune, 30 years old)
  • I used to work out six 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 get extremely dizzy/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)
  • I can not eat. I can not stand or sit from the hypotension. (Danielle, 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 and carbs, try to eat healthy, but don’t deny yourself anything. (Sarah, 37 years old)
  • I haven’t been able to exercise in two years :(. (Sorana, 37 years old)
  • Diet has helped me tremendously. I am just now getting back into walking some. (Jamie, 39 years old)
  • Diet and exercise have been absolutely critical for my healing. Food got me 80% better before I finally got 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)
  • Both help. Gluten free. (Jen, 40 years old)
  • Too restricted. (Kristen, 44 years old)
  • It’s a must– so important! But it is truly a daily struggle. (Chris, 45 years old)
  • Not good and I can’t exercise, walking is sometimes to painful, SHOWERING is sometimes to painful, I have to force myself … (Cheryl L, 48 years old)
  • Exercise is hard, and so is eating. (Kim, 48 years old)
  • I eat a gluten-free, dairy-free, very limited sugar diet, with no alcohol, and exercising daily is extremely important, even when I’m in horrible pain or extremely exhausted because of restless leg syndrome and sarcopenia. Also exercise helps stimulate the lymphatic system, which can help get rid of the toxins. (Jill, 49 years old)
  • Gentle exercise is nice, have to eat very clean now…I miss junk food, but it makes me feel terrible- really sick- so I try to eat contentiously…I miss pizza soooooo much… (Raquel, 49 years old)
  • Cut out as much sugar as possible from your diet. (Cynthia, 50 years old)
  • When it flares it’s hard to keep active but I definitely feel better when I do. (Shari, 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 even worse afterwards and for the rest of the day. I have to do physical therapy right now (three times a week for two 1/2 hours 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 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 one 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 my 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, alcohol free. Try to walk at least 3 days a week. (Susan, 53 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, Astragallus to help immune function. (Julie, 55 years old)
  • I can’t exercise now due to pain. I have not changed my diet yet. (Lori, 55 years old)
  • Hard to follow and difficult to do. (Marti, 55 years old)
  • Little of both. (Ann, 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 I can’t do much. Herx after a good workout, a lot. (Gill, 57 years old)
  • Eat clean as possible. No exercise. (Sue, 57 years old)
  • Helps a lot! (Pamela, 58 years old)
  • Walk, food and clean water. (Regina, 58 years old)
  • It’s hard to eat organic or things I’m not allergic too. Not exercising now. (Sandy, 58 years old)
  • Maintaining a good diet helps. (Terri, 58 years old)
  • Clean healthy food and moderate exercise. (Helen, 60 years old)
  • That does help but I’m bad.. Sometimes, my reward for making it thru a day would be a bowl of ice cream..I do exercise, but I still hurt. (Sue, 63 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 is very discouraging. (Deborah, 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)
  • Diet is good, actually have to eat more salt – exercise is walking about 1-2.5 miles per day and some basic yoga moves. Especially the breathing. (Nancy, 64 years)

Lyme Disease Treatments

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

  • 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)
  • I am currently on IV antibiotics daily, I have found no symptom relief at this time. (Rachel M., 27 years old)
  • I have only been on antibiotics for three months so far, and am seeing small progress. (Brittany, 29 years old)
  • I haven’t had support from the medical community. (Kitsune, 30 years old)
  • I just did one round of doxycycline. I was told I have PTLD. (Michelle, 30 years old)
  • Five months of antibiotics with no negative or positive effects. Supplements seem to help the most. (Tiffany, 32 years old)
  • Many supplements, Rife, collodial silver, oral antibiotics, IV antibiotics. (Danielle, 34 years old)
  • 28 days of doxy, some anti-nausea meds and sent on my way. (Danielle, 35 years old)
  • I treated for three years with antibiotics and herbals, including six months with a picc 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 bug die off. Doxy is ok so far. Mobic helps with inflammation and sleep. (Sarah, 37 years old)
  • The Lyme treatment really messed up my already messed up gut, so I had to stop. (Sorana, 37 years old)
  • I believe it takes herbals and antibiotics, both. (Jamie, 39 years old)
  • I have been in treatment for a little over a year now after six years misdiagnosis. I do antibiotics, antifungals, and anti malarials (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)
  • So far the best, I’ve only done doxycycline, and it helped quite a bit. (Jen, 40 years old)
  • Nausea, hair falling out more, heart palps. (Kristen, 44 years old)
  • Antibiotics helped me turn the corner, but vitamins and diet have made all the difference. (Chris, 45 years old)
  • Medications, positive attitude, Anodyne machine and Rife. (Kim, 48 years old)
  • I have been trying to find appropriate treatments that are really effective for seven 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…alinia with minocycline makes me even more dizzy… (Raquel, 49 years old)
  • 20 days of Doxycycline. (Cynthia, 50 years old)
  • Myers IV, glutathione, cats claw, 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 actually got worse when I stopped these things. Now, I’m doing bee venom threat, and it’s working! (Christi, 51 years old)
  • I tried three 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 two weeks, 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 blood pressure medication and I’m planning on going back on the herbs in about two weeks if all goes well. (Teri, 52 years old)
  • Did pulsing medications and generally felt 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)
  • Most people experience a Herx response a short time after starting treatment as a result of bacterial die-off. Persist and don’t give up, it’ll get better. (Julie, 55 years old)
  • It’s expensive as hell. During treatments it is a wonderful space to be in, but it has taken all of my money. (Marti, 55 years old)
  • Trying herbals supplements..not being treated. (Ann, 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 persons 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)
  • Nothing works. (Sue, 57 years old)
  • I only take Ibuprofen or Tylenol now. Was on Percocet for many years before. (Pamela, 58 years old)
  • No luck. (Regina, 58 years old)
  • IV antifungal and antibiotics work the best. I can’t stay on treatment long enough to get better. Something always interferes. (Sandy, 58 years old)
  • Total BS, I’m in Canada. What treatment? (Terri, 58 years old)
  • On 3 weeks of dox and if joint pain starts an additional week I was told. (Mary, 59 years old)
  • Did abx, herbal, homeopathy, acupuncture, body, pemf. (Helen, 60 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)
  • After four years of misdiagnosis (fibromyalgia), I finally was properly tested. I found an LLMD, tried three different antibiotics over six months and used salt/C protocol. My symptoms improved, but I have Lyme flares once or twice a year, which I knock back with acupuncture. (Deborah, 64 years old)
  • Antibiotics and prednisone- never again, they about ruined my liver and kidneys. I’ve been on plexus, it helped some. Massage has been helping some and epsom salt baths. I’m wanting to try Cannabis oil, I have heard wonderful things. (Nancy M., 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)

Lyme Disease Recommendations

Anything you’d recommend for someone with Lyme Disease?

  • 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 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)
  • Magnesium, vitamin D and probiotics. (Tiffany, 32 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 an LLMD, 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 and aren’t trained in how to treat it. (Sarah, 37 years old)
  • Diet, and building up adrenals is a key factor in treating Lyme. (Jamie, 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)
  • Try to stay positive! (Kristen, 44 years old)
  • Take one day at a time. Seek help from a doctor who listens, and then coordinate care with a holistic approach. (Chris, 45 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 a lymes literate medical doctor who really understands the disease…be prepared to spend a lot of money… (Raquel, 49 years old)
  • Research, research, research!!! (Cynthia, 50 years old)
  • Change your diet immediately. No gluten, no sugar no dairy! (Shari, 50 years old)
  • Seriously look into 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)
  • Follow guidance is someone educated in Lyme. (Susan, 53 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 two weeks 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 have to find one thing that works, and it will give you enough hope to find other things. (Teri, 52 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)
  • 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)
  • Keep fighting. Rest whenever you can and try to stay positive. (Steve, 56 years old)
  • Hang on to what you were, He/She is gone… (Gill, 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)
  • Don’t try to do everything like before, ask for help. (Mary, 59 years old)
  • Educate yourself, and don’t be afraid to try different things. (Helen, 60 years old)
  • Get to a LLMD. (Sue, 63 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)
  • Not as of yet, I’ve been suffering for more than five years, and I’m 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)
  • Don’t panic and be sure your Dr is Lyme Literate – search and find a good Dr. (Nancy, 64 years)

Lyme Disease Resources

What specific resources have you found most helpful?

  • 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 of people who are living this nightmare. (Kitsune, 30 years old)
  • Others effect 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 Facebook. (Sarah, 37 years old)
  • Stephen Burner and Richard Horowitz. (Jamie, 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)
  • Funny movies, laughter IS the best medicine, surround yourself with people who truly love you. (Kristen, 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)
  • The MLDA. (Kim, 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 lymes as I can find. (Raquel, 49 years old)
  • My LLMD in Michigan. (Mary, 50 years old)
  • Dr. Rawl’s videos/books, a Facebook 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.Horowitz book on Lyme. (Susan, 53 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)
  • Facebook support groups. (Lori, 55 years old)
  • Facebook support groups, Lymedisease.org. (Marti, 55 years old)
  • Forums and research. (Ann, 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)
  • Facebook groups. (Sandy, 58 years old)
  • Online groups. (Terri, 58 years old)
  • What detox to use and how it works. Googled it. (Mary, 59 years old)
  • Books by Horowitz and Buhner. (Helen, 60 years old)
  • The blogs and hearing other people’s stories. (Sue, 63 years old)
  • A very Lyme knowledgable and compassionate acupuncturist. (Deborah, 64 years old)
  • My plexus agent, talking to other Lymies, going away from Western medicines, looking into natural healing. (Nancy M., 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)

Lyme Disease Stories

Share your Lyme Disease story.

  • 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 over all 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 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)
  • 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)
  • 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 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)
  • 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 not 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)
  • 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 “over doing 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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)