Chronic Lyme Disease

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Lyme that isn’t treated long enough (or at all due to misdiagnosis) can turn chronic, often called Late Stage Lyme disease. The longer the Borrelia burgdorferi (Bb) bacteria stay around and reproduce, the more serious the complications, including immune system breakdown, additional infections, hormonal imbalance, and more.

Under these circumstances, getting rid of the disease takes longer (1-4 years or more). Treatment is often more aggressive and hence more time-consuming and expensive. Quality of life decreases, making normal living difficult.

Mind you, not everyone agrees that’s there IS such a thing as chronic Lyme. Doctors following the guidelines of the Infectious Diseases Society of America (IDSA) treat the illness with an antibiotic for a short period of time. if symptoms persist beyond 6 months, they say the person has Post-Lyme Syndrome, the result of an overactive immune system that hasn’t yet returned to normal after the person is considered “cured.”

Here’s exactly what the IDSA guidelines say (link below):

There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (>6 months) subjective symptoms after recommended treatment regimens for Lyme disease.

Therapeutic modalities not recommended. Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing onsome days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others.

You can download the IDSA Guidlines here.

On the other hand, so-called Lyme-literate physicians (LLMDs) agree that the disease can persist far beyond 6 months. They tend to follow the guidelines of the International Lyme and Associated Diseases Society. Click here for the ILADS Guidelines.

You can also download a free PDF of a research article by Daniel Cameron, MD, a respected LLMD from the Department of Medicine, Northern Westchester Hospital, Mt. Kisco, NY, titled Proof That Chronic Lyme Exists.

Those of us with Late Stage Lyme, including me, will tell you that our symptoms are not psychosomatic. Borrelia is a master at hiding out in the body to survive, going from adult spirochete to cell-wall deficient form to cyst and back. For those who also have one or more of the common co-infections (Babesia, Bartonella, and Ehrlichia), treatment gets trickier. In addition, along the way Borrelia disrupts the immune system and body metabolism, allowing other normally dormant microorganisms like herpes viruses, parasites, and fungi (yeasts and molds) to activate and also cause symptoms.

No two chronic Lyme patients have the same symptoms. Nor do they have the same prognosis or follow the same course of treatment. For those reasons, and the fact that I am not a medical doctor, this is not the space to discuss the specifics of treatment beyond what has already been explained in my prior post Gettng Rid of Lyme.

Suffice it to say getting well from this infectious onslaught is often a roller coaster ride of improvement and relapse. Still not well understood, the complex of diseases continues to prove a challenge for both patients and doctors, showing that stages of Lyme need to be taken into consideration during diagnosis and treatment.

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417 Responses to “Chronic Lyme Disease”

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  1. Christine Says:

    I lived in southern Ohio in a tick infested area for several years. It was so bad I had to use Kleenex to pick up ticks that were climbing up the walls in my house to flush them. A month after I moved from there to northern Idaho, I developed a bulls-eye rash. I saw a local physician who diagnosed ringworm and gave me a topical cream. Over the years, I developed pain and swelling in my knees and became more and more “clumsy”, tripping and falling for no apparent reason. Six years after the rash, I had a six month long series of Bells-palsy episodes along with eye inflammation. The clumsiness continued. Ten years after the rash I got a flu shot and within a week,I developed muscle pain in my arm that spread over the next few months to include both arms, both legs, my neck and back. I began having tingling in my fingers and toes. My muscles became extremely fatigued and I began walking with a cane. I then began having muscle spasms and shooting pains in my shoulder joints and incredible pain and deep aches in my hips. It’s been 2 1/2 years since that flu shot (catalyst) and I have not had a pain free day since. It has been 15 years since my tick-infested house and my rash. I have been tested for MS, Lupus, Guillian-Barre, ALS, and Lyme (ELISA and Western Blot). Everything has been negative. I have asked to be retested for Lyme using a different lab but my doctor refuses. I have been on disability for almost 2 years now. I am printing the ILADS information and headed back to my doctor. I am SURE I have chronic Lyme. I now have to convince him…or the rhuematoligist he just referred me to. I’ve had 2 positive ANA titers, a “minimal” delay on my SSEP, no problem (they say) with my lumbar puncture. I am more than frustrated! Thanks for helping to get more recognition for CHRONIC Lyme!

    Reply

    • Pam Dodd Says:

      Christine, you need to see a doctor who knows how to diagnose Lyme correctly and treat it adequately. That unfortunately is probably not your regular doctor or even a rheumatologist. If you tell me where you live now, I’ll send you info on how to find one. Glad you asked and apologies for my very tardy reply.

      Reply

  2. Mimi Says:

    I am currently being treated for Lyme, Babesia, and q fever! I have been blessed to see a LLMd for the past 5 years or I fear I would be far more ill. However, my DR is changing practices and I will not be able to see her any longer. Help! Please send LLMD info for Virgina. Thanks for your blog.

    Reply

  3. BRIAN Says:

    i have read through all these responses here, watched the documentary “under our skin” and strongly feel this is what i suffer from. have only been tested once for lyme and it came back negitive. been to more doctors and so many tests than i can count, all tests come back neg. been living with this for 5 years now, if you can call it living… going to my family doctor next week and want to bring up the lyme again to him, are there any doctors that specialize in lyme in the western new york area that i can ask for a referral to? thank you

    Reply

  4. Jeepers Says:

    Hi all. Got sick last march 2011 with what I called the mild flu (also caught parvovirus from my daughter thrn too). I have been sick every since. Main complaints are dizzy-ish, lightheaded, foggy, achey, some twitching. Every med makes my symptoms worse. I’ve seen every dr under the sun…primary phy. Neurologist, ms specialist, rheumatologist, endocrinologist, infectious diseases. Etc… I did 6 weeks iv rocephin, nothing…steroids…nothing, ivig…saw slight increase. Lymes was suspected all along. Finally went to llmd and started doxy 50 mg 1x a day…Sooooo super dizzy, headache, terrible aches. Herxing takes how long? I got scared after 1 week so now i”m doing 1 pill every other day. Have a 5 yr old to keep up with. Ugh! So frustrated!!! Any words of wisdom from anyone. Who are the llmds recommended in my area? Central NJ….thx

    Reply

    • Pam Dodd Says:

      Sorry you’re having such a time of it, Jeepers. Herxes can last for a while; it differs for everyone. It’s also possible you may have one or more of the Lyme co-infections – Babesia, Bartonella, Ehrlichia, and Anaplasmosis. Most folks with Lyme have at least one. I’m sending you NJ Lyme info so you can get an opinion from someone who knows how to diagnose Lyme correctly and treat it adequately if you do have it. Thanks for asking.

      Reply

  5. Sarah Says:

    Hi Pam, I’m wondering if you have any info on LLMDs in Ohio, Kentucky or Indiana.

    My mom has symptoms of Lyme; her doctor doesn’t think it’s Lyme, but doesn’t know what else it could be. She’s on antibiotics and Cymbalta for her tingling/burning skin, nerve pain and joint pain. Hoping to find an LLMD so she could get a second opinion instead of taking medication without any idea of a diagnosis. Thank you for this site and for your help.

    Reply

  6. LouAnn R. Says:

    Who can treat me for lyme disease in Mesa Arizona?

    Reply

  7. Crystal Says:

    I’ve been suffering with lyme disease symptoms for 17 months now. I’ve been tested for lymes disease twice and the last test came back just barely elevated but my doctor said it was negative and nothing to be concerned about. In addition to the classic symptoms I have distal extremity pain, started in my forearms and has migrated to both lower legs and feet and upper left quadrant fullness and sometimes pain. For the past 4 months I’ve had muscle fasculations everywhere, face, body and deep withing my abdomen. In your opinion does lymes disease sound like an accurate diagnosis. I’m only 28 years old and this has taken over my life! And to think a few rounds of antibiotics may be able to cure me. I live in southern Virginia. If there are any LLMDs in my area, I’d love the information. Thanks so much.

    Reply

    • Pam Dodd Says:

      I’m sending you VA Lyme info, Crystal. I couldn’t say if you do or do not have Lyme. If you think your symptoms match what you’ve read here and elsewhere, I’d consult a Lyme specialist. Many treat mainly on clinical symptoms if the tests are equivocal. Lyme is so immunosuppressive that often the body doesn’t make antibodies to it, which are the teests measure. Thanks for asking.

      Reply

    • Pam Dodd Says:

      Crystal, your email was returned undeliverable. If you get this, let me now what other email address I can send into to. Thanks.

      Reply

  8. Deb Says:

    Pam,
    I am asking for names of LLMDs in Illinois/Wisconsin/Indiana/Iowa area. My husband has been symptomatic (bullseye rash, headache, fatigue, back pain, numbness in both feet, etc. for two years, but his lyme tests have been negative. He was originally treated with doxycycline for 28 days, and then cipro for 10 days. His bullseye rash still presents itself, and he had extreme fatigue and severe headaches. Because of the negative results for lyme, no local physician will consider lyme as a diagnosis. We are hoping to find someone who will finally diagnose and treat him appropriately.
    Thanks for your help.

    Reply

    • Pam Dodd Says:

      Lyme info for the states you requested is being sent shortly, Deb. A bulls-eye rash means Lyme. It sounds like your husband had the CDC tests, which are very unreliable. And a month or so on antibiotics rarely gets rid of Lyme. Plus he should be tested for the Lyme co-infections Babesia, Bartonella, Ehrlichia, and Anaplasmosis. Most people with Lyme have at least one. Thanks for asking.

      Reply

  9. Nancy Says:

    Pam – I’m reading with great interest the information on your site. Thanks for your apparent dedication. My 15-year old son was diagnosed with chronic lyme last week and began his antibiotics over the weekend. He has been experiencing the herx effect, but he seems to be feeling a little better each day. Although the medical practice that diagnosed him is very proactive and familiar with lyme, I think I’d like to have some LLMD references to turn to should I need them. Can you provide me with a list of LLMDs in CT and NY (Westchester/NYC area)? Many thanks.

    Reply

    • Pam Dodd Says:

      CT/NY Lyme info is on its way, Nancy. Thanks for asking.

      Reply

      • Laura Says:

        Hi Pam-
        Can you please supply me with CT Lyme info as well? I was diagnosed with Lyme disease back in July 2010 and again this past month. Thanks in advance!

      • Pam Dodd Says:

        Your Lyme probably never went away, Laura. CT Lyme info is on it’s way. Thanks for asking.

  10. Bethany Says:

    Just learned today that bloodwork came back positive for Lyme. Have had continuously deteriorating health for at least four years. Horrible joint pain, fogginess, memory issues, foot pain, night sweats, weigh gain, blurry/double vision. I’ve been to my family doctor, rheumatologists, orthopedics, gynocologists, endocrinologists, internists – you name it. Noboby ever finds anything of consequence and I’m typically sent on my way with some vague explanation – stress, menopause, etc. I’ve gone from being a former gymnast, lacrosse player, competitive racquetball player, etc. with a fast-tracked business career to a feeble, out-of-shape, aching middle-aged woman who has to push just to get through the day. I’m a single mom with two teenagers so giving in to the pain is just not an option – I have to be here for them. Where/how can I find a LLMD in the Northern Virginia area? (Maryland or Pennsylvania would work, too, if that’s what it’s going to take to get better. I’m only 50 – this isn’t how life is supposed to be!)

    Reply

    • Pam Dodd Says:

      Sorry you’ve been so disabled, Bethany, but glad you have a positive Lyme diagnosis. I’m sending you VA Lyme info do you can find a Lyme specialist.
      Glad you asked.

      Reply

    • D Says:

      For LLMDs try: [doctors’ names deleted]. If you choose to go Chinese medicine.
      Haven’t found or heard of a western MD in NOVA who has a good record for curing lyme.

      Reply

      • Pam Dodd Says:

        Thanks, D. Sorry I had to delete the names you recommended. It’s an online convention not to name Lyme doctors to protect them from harassment by their state medical boards for the “unorthodox” treatment of Lyme with long-term antibiotics. However, I’ll make sure to include the names in the emails I send to folks in VA who request info on this site. Thanks for commenting.

  11. Amy J. Says:

    PLEASE HELP!! I’ve been ill for almost 4 years now. No one has been able to figure out what the problem is. 2 years ago I became so ill I ended up in the hospital for a week. They ran all sorts of tests, but since my Dr. had tested me for Lyme twice, they didnt run this test again. After almost 2 yrs with my current doctor, he sent me for a spinal tap, which DID test positive for Lyme. He then directed me to the CDC in Winston Salem, NC for treatment. They informed him that I didnt have Chronic Lyme, and they wouldnt see me. He said they really slapped him on the wrist! They said to treat me with 14 days of antibiotics and that should do it. This illness has caused me to lose my job, not to mention the debilitating effects it has had on my body. My nervous system has gone crazy, I live in a fog, and the migraines are incredible. I’ve gone over several different symptoms checklists and can check 99% of each form! I want my brain and body back, I NEED HELP.. I dont know where to turn. I live in the Hickory, NC. Are there any Dr’s that specialize in Lyme in this area? Thank you for your help, Amy Johnson.

    Reply

    • Pam Dodd Says:

      So sorry you’ve been on such a wild goose chase, Amy. Unfortunately the CDC is the last place you want to consult about diagnosis and long-term treatment for Lyme. I’m sending you NC Lyme info. Travel if you must to find a doctor who knows how to diagnose Lyme correctly and treat it adequately. Thanks for asking.

      Reply

    • Jill Says:

      use a Rife machine to kill off the bacteria

      Reply

      • Pam Dodd Says:

        Thanks for commenting, Jill. Some people do find the Rife machine helpful, although there is question about whether or not it can get rid of Lylme. Such is the nature of Lyme treatment unfortunately.

  12. Amelia C. Says:

    Hello,
    4 years ago I tested positive for Lyme suffered debilitating migraines and major joint pain. Was treated with Doxy. Symptoms never really went away but was then diagnosed with a thyroid condition. A year later tested positive for lymes again….I knew myself because of my mood and how I felt, again treated and it was gone. But now, 4 years later I’m becoming much more immobile. My legs, hips, & feet ache and hurt so badly I’ve had to give up all lower body exercising including yoga, tennis, even walking hurts. Holding my baby on my hip is a challenge. Sitting I the floor with my kids isn’t even an option anymore. After being treated for bursitis my dr finally ran another lymes test that came back with all 3 bands positive (not sure what that means) but now back on doxy.

    Do you think I should see a specialist? Is it common that most women have developed a thyroid condition as well? Can you recommend anyone in the NJ, NY, & PA area?

    Reply

    • Pam Dodd Says:

      Amelia, you need to see a Lyme specialist. Sore feet is a classic symptom of Bartonella, one of the Lyme co-infections (the others are Babesia, Ehrlichia, and Anaplasmosis). Most people with Lyme have at least one. As for thyroid issues, most people with Lyme have them. I’m sending you NY, NJ, PA info so you can find a doctor who knoes how to diagnose Lyme & co-infections correctly and treat them adequately. Thanks for asking.

      Reply

      • dottie Says:

        hi, i was tested for bug bites,came back negative, ive been sick for 7 years, told i was crazy, i put in symptoms way back then, always comes back as lyme, just had radiation, for thyroid problem, im convinced i have it, i live in rochester,ny , im feeling like death at this point, cant take it anymore, need help to get diagnosed properely, dont understand how some people come back positive,and some negative and still have this disease, please let me know if there is any doctor in rochester that takes this seriously and can possibly help, with out making me feel like im a crazy person. pleeeaassseee HELP

      • Pam Dodd Says:

        NY Lyme info is on the way, Dottie. Some people come back negative on tests for Lyme, but still have it, because the tests aren’t reliable and Lyme is a clever organism, able to hide from our immune system so it doesn’t show up on tests. Thanks for asking.

  13. Jean Says:

    Was researching Wormwood, after a friend told me about Dr. Oz talking about ridding the body of parasites, and somehow found you along the way.

    I am a hypothyroid patient. My chief complaint for 10 years is fatigue, fogginess, aches. The Endocrinologist is getting cranky about this complaint I believe.

    I am often in the garden during the warmer season and have been bitten thousands of times by all kinds of insects. I have never been bitten to my knowledge by a tick.

    I read a response to someone else that it can come from almost any insect.

    I would very much appreciate any info for a doc that has knowledge of such infections in the North Atlanta Suburb area of Kennesaw, GA–30144.

    Oh gosh perhaps I found a pathway finally to resolve these symptoms.

    Reply

    • Pam Dodd Says:

      Jean, most of us with Lyme have thyroid issues. I’m sending you GA Lyme info so you can get tested by someone who knows how to diagnose Lyme correctly and treat it adequately if you have it. Thanks for asking.

      Reply

  14. Lori Says:

    Looking for llmd in nj

    Reply

  15. Lou Says:

    Hi Pam,
    About 8 years ago I had flu symptoms in the summer time and my Dr. had me tested for lyme with the “less accurate/fast” test which came back positive. Dr. suggested I take the more accurate/long test so I did but I was about to travel ouside the country at the time so the Dr. gave me a round of antibiotics to start while travelling. Result contacted me while I was traveling with negative results and told me to stop treatment so I did. I’ve had on and off symptoms since but mostly around chest soreness, cloudiness, anxiety, difficulty swallowing, more recently some kind of heart flutter or palpitation. But check for heart (echocardiagram-showed a little enlarge left vent, so move to stress test-shwed small area of poor oxygenation, so move to angiogram that was all positive), lung (put on asthma medication for a while), throat, GI (saw throat specialist, ENT still nothing to explain). Last summer I had heavy flu-like symptoms and discovered a bull’s-eye on my leg. Got tested with the “long” test that came back negative but due to strong symptoms, Dr. suggested I take the 4 week doxycycline trmt so I did. Felt better immediately but those symptoms other than flu-like came back and seem to rotate from one to the other. Dr. tested for H-pylori and it showed pos. Saw GI specst who tested with some test (drink fluid and exhale in bubble) that came back neg.

    Not sure if I might have Lyme but from reading blog, it may be worth considering. I live in upstae NY and would appreciate a list of LLMDs

    Reply

    • Pam Dodd Says:

      Lou, I’m sending you NY Lyme info. I think it’s be worth consulting someone who knows how to diagnose Lyme and related co-infections correctly and treat them adequately if you have any. You’ve had quite a wild goose chase. Thanks for asking.

      Reply

  16. Billie Jo Says:

    I was diagnosed with Lyme’s disease back in 1998 did the month of antibiotics and can honestly say I have been sick almost constantly since then. I have no insurance and have not for several years ….I am getting worse the time between infection is getting shorter and shorter. I have chronic fatigue have had no energy and this is really starting to scare me….my quality of life is deteriorating I am only 44 but feel much older can you give me any direction on what I should do?

    Reply

    • Pam Dodd Says:

      Billie Jo, you need treatment. Two suggestions: If you tell me in what city and state you live, I’ll send info on how to find a Lyme doctor. Doxycycline, a drug of choice for Lyme, is cheap. You could also look online for Lyme self-treatment protocols. Some over-the-counter meds and herbs can be helpful, although they alone are unlikely to get rid of the Lyme. Good luck. Thanks for asking.

      Reply

  17. stage Trish Says:

    We are looking for a Dr. from Children’s Hospital in Boston that diagnoses/treats late stage Lyme. We have negative ELISA and Western Blot but too many symptoms to ignore. Our daughter’s mental status is deteriorating quickly (anxiety, panic, brain fog, memory loss) and we would appreciate any information you can share.

    Reply

    • Pam Dodd Says:

      I”m sending you MA Lyme info, Trish. Please consider that a Dr. from Children’s Hospital may not be your best choice for your daughter’s treatment for Lyme. Talk to others before you decide where to go. Thanks for asking.

      Reply

      • Dawn B. Says:

        Just to echo that sentiment: we took our daughter to children’s hsp in another state and even though we already knew she had lyme (and had been previously diagnosed elsewhere out of state) she and parents were treated horribly and told we don’t have lyme in our state, that it doesn’t “do this” indicating toward our daughter and her symptoms. Be careful that you have a doc who is at least open-minded toward the possibility of lyme because hard as it was to believe, they can be not only open but openly hostile.

      • Pam Dodd Says:

        Good warning, Dawn. It is hard to believe that doctors could be so unknowledgeable and even hostile, but there it is. I’ve heard this from many others, too. Thanks for sharing your experience.

  18. Amber Says:

    I first tested “sort of positive” for Lyme back in 2000, and did my month of antibiotics. I was tested again in 2010 and another month of antibiotics. I’m now on my third time, and looking for a LLMD in the Hudson Valley, NY or Lancaster, PA area. Maybe the third time’s the charm!
    Thanks!

    Reply

    • Pam Dodd Says:

      Amber, sounds like you need more than a month of antibiotic to get rid of the Lyme. You also should be tested for the co-infections that often come with Lyme (Babesia, Bartonella, Ehrlichia, and Anaplalsmosis). Most people with Lyme have at least one. They also need to be treated.

      I’m sending you NY Lyme info, your best bet for LLMD options. Thanks for asking.

      Reply

  19. Kate Says:

    Hi Pam,
    I’ve just been diagnosed with Lyme from a tick bite about 10 weeks ago and am currently on doxycycline. I’m not sure if it will take care of it.
    Could you send info on LLMD’s in Maine?
    Thanks, Kate

    Reply

  20. Erica Says:

    Hi Pam,
    Thank you for your site – you sum it all up so well, and almost make it sound simple! I know that Lyme is anything but…

    I believe I was infected for about 6 months before I was tested for Lyme and started treatment. From there the Doxy only made me worse, but I kept taking it as prescribed. It was another 6 months before I searched out another doctor and started the IV Rocephin. After one treatment, some color returned to my cheeks and I knew that this was good medicine for me. After 6 weeks, I finally felt cured, although I knew my body still needed some time of recovery.

    At this time, a year later, I think the symptoms are back but to a milder degree. I spent some time in denial last year and probably paid for it by not taking the antibiotics sooner. Is there a good LLMD nearby who could help me in my current situation? I’m in Fairfax, VA. I really appreciate your feedback and assistance!
    Best of luck
    -Erica

    Reply

    • Pam Dodd Says:

      Erica, VA Lyme info is being sent shortly. If you’ve had Lyme more than a month or so when you begin treatment, it usually takes much longer to get rid of than we have the patience for. Plus most people with Lyme usually have one or more co-infections (Babesia, Bartonella, Ehrlichia, and Anaplalsmosis), which you should be tested for. Thanks for asking.

      Reply

    • Pam Dodd Says:

      Erica, VA Lyme info is being sent shortly. If you’ve had Lyme more than a month or so when you begin treatment, it usually takes much longer to get rid of than we have the patience for. Plus most people with Lyme usually have one or more co-infections (Babesia, Bartonella, Ehrlichia, and Anaplasmosis), which you should be tested for. Thanks for asking.

      Reply

    • Donna Says:

      Did you ever find a LLMD in Fairfax, Va? Did they give you more meds?

      Reply

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