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CFS and Lyme? Not sure of anything. Help.

Discussion in 'General ME/CFS Discussion' started by el_squared, Oct 27, 2016.

  1. el_squared

    el_squared

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    Hi there,
    So with my health declining even more in recent years, I went to a functional MD outside my healthcare insurance. Recently, the doctor diagnosed me with Lyme through two alternative tests -- the Advanced Laboratories blood culture and the Igenex testing. (I appear to be "indeterminate" by the Western Blot interpretation.) I am already a CFS patient and have diagnoses of Celiac Diease, fibro, IBS and SIBO (small bowel bacteria) and a neuro movement disorder. I just told my practitioner at the Stanford Chronic Fatigue Syndrome clinic and she warned me against doing treatment for Lyme, because they at the clinic don't believe these tests. I just don't know what the hell to do!
    Anyone have any thoughts on this?
    thanks,
    Laura
     
  2. Kati

    Kati Patient in training

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    Hi @el_squared indeed, thread carefully, especially if you are going outside your health care insurance.

    If you go to so-called Lyme litterate doctors, they will indeed diagnose you with Lyme. But you have to be careful about the validity of the tests, and about the fact that the long term antibiotic treatments are ineffective and particularily expensive especially when you need IV antibiotics.

    There seems to be a cult out there saying that fibro is Lyme. That MS is Lyme that Alzeimer's is Lyme, that pretty much all of the vague symtoms that seem to overlap with ME are Lyme. I find this quite suspicious.

    I know others here will disagree, but I wanted to give you some heads up.
     
    Last edited: Oct 28, 2016
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  3. el_squared

    el_squared

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    I'm not saying I don't have Lyme, but I am a bit skeptical. I just want a clearer explanation of why these tests are still not recognized by the FDA/CDC. I realize people allege conspiracy -- but I want something more specific than that. it does feel like herd mentality thinking out there. One thing I don't doubt is that people are suffering. I am a little jaded because I have been sick in one way or another a lot of the past 20 years. Eleven years ago I was diagnosed with Celiac, which I feel was a very solid diagnosis and there were very clear signs I had it. That certainly could have messed up my immune system in a permanent way. Later came pain, and then a fibro diagnosis, and increasingly longer periods of crushing fatigue, and crashes, and then the CFS diagnosis. So I don't know if it's all about Lyme, even if I do have Lyme in my system. I do have neurological problems now, which my lyme doctor thought probably had to do with Lyme. But when I asked her how many people she diagnosed with Lyme, like a ratio of the people she gives the tests to, she didn't answer. There were a few questions she dodged. But she is an MD, which is why I went to her. At a Lyme support group someone made the statement that all fibro is Lyme, and I wanted to say, you might speculate that, but you don't know. There are no studies to indicate that at all. I think when people are suffering they are so excited to put a name to their suffering, and I get that. Hell, since I've started saying I have a Lyme diagnosis people are paying more attention to my suffering, even though my suffering hasn't changed. Anyway, hard to know what to do. I'm at a crossroads.
     
  4. Vojta

    Vojta Senior Member

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    Hi Laura,
    I was in similar position as you regarding ME vs Lyme. I thought I had EBV related CFS for first 2 years of my illness. Then I was given lyme diagnosis just by "clinical diagnosis" without any accepted proof. I was treated for years with antibiotics (including IVs) without getting any improvement at all at any single time and without any herx reaction. Over time I was actually getting worse from toxicity of drugs and damaged gut and I got more new permanent symptoms and problems including SIBO, fibro and arthritis which I didn't have before. It was big mistake to trust this doctor who took barely 2 mins to review my case but I had no one else in Europe who would treat me or diagnose me. And he unfortunatelly transformed over years from CFS specialist to so-called Lyme specialist and his answer for everything was "it's lyme".

    My advice is be very careful with long term antibiotics if you are not sure about correct diagnosis. And if you try that and don't have any improvement or typical herx reaction just stop in time. Also be suspicous if doctors and other patients tell you that side effects from antibiotics are herx because it could just be drug toxicity.

    There is big group of undertreated people who really have lyme and other infections who benefit from antibiotics but because overlapping symptoms and insufficient diagnostic tests many people with ME/CFS are wrongly diagnosed and mistreated. There is still possbility of having ME/CFS first and collecting chronic infections later because of impaired immune system though.
    Maybe even I have some stealth uknown lyme but the fact is that no antibiotic or herbal combination did anything positive for me in 5 years of treatments and actually made me permanently worse. I want to consult another ME specialist but I have to travel outside of Europe now because I don't know about any doctors accepting new patients here.

    I hope others will write more about validity and reliabily of the tests you took as I don't have experience with these.
     
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  5. Rossy191276

    Rossy191276

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    Hi guys... I am in a similar position at the moment... I was first diagnosed with ME/CFS by a specialist but he suggested getting tested for Lyme... I have had 3 Western Blots from 3 labs that were negative, a PCR that was indeterminate, but I have had 2 Elispot tests from 2 labs that were both positive. My disability is extreme and I have had symptoms that any lyme doctor would classify as chronic near lyme..I went on 3 months of combo oral antibiotics and have been on Buhner herbs for 5 months now....but the confusion for me is that by the time I started the antibiotics I was improving. While I continued to improve to the point where I believed I may have cured the lyme about a month ago while still on the antibiotics i started getting symptoms again. Also I never Herxed at all when starting treatment. Now I am back on the antibiotics but am back to struggling big time again. I have been wondering if it is possible that my experience has just been ME/CFS cycles as my worst symptom is extreme exertion intolerance and PEM and gets triggered with activity...For those interested there is a thread discussing Lyme testing- Armin labs discussion that has been updated over the last few days. I asked the question of whether it's possible that something about ME/CFS gives false positives on the tests I was positive to and the general opinion was that this shouldn't happen...All the best..
     
  6. el_squared

    el_squared

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    I hope other members can chime in.
     
  7. jlynx

    jlynx Senior Member

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    I had Lyme when I was five years old, so it was a question of whether it was reactivated Lyme or not. I did three months of oral abx and four different doses of LDI shots, with zero improvement. So I don't think it's Lyme for me. I also don't have joint pain which is a common symptom.

    @el_squared I often just say I have Lyme anyway as well, since it gets more understanding.
     
  8. Hanna

    Hanna Senior Member

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    I was diagnosed with CFS/ME 18 years ago, and then with lyme and coinfections 2 years ago (ELISA +). One year of antibiotics helped me to some extent (tremors/heavy night sweats/ racing thoughts/ dizziness) but didn't solve at all my lack of energy, the "fibro" pain etc...and I still need my wheelchair to get out of my house.

    After one year of ABX I decided to stop them and continue my daily supplementation for ME along with phyto for Lyme and co (otherway, those symptoms that stopped return back) according to the Bunhner's protocole. The plants are generally well tolerated.

    Testing for Lyme and co is still problematic, and choosing the ABX route isn't without risk. Maybe if you find a serious herbalist, you could test the natural route and see if there is any impact on your health ?
     
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  9. caledonia

    caledonia

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    Here's a little different angle from Andrew Cutler: you don't have Lyme unless you test positive on the standard test. The other tests can have a lot of false positives.

    There are many overlapping symptoms between Lyme, ME/CFS, FM and mercury toxicity. You may actually have mercury toxicity or other metals toxicity as a root cause for everything. Even if you do have Lyme, testing and treating for mercury toxicity, if present, can be helpful.

    See the Cutler frequent dose chelation section in my signature link for the right test and how to get it interpreted for free. The test is only $85 so it's more or less a no-brainer. There are several support forums online where you can get help with the protocol if that's something you decided to do.
     
  10. Rossy191276

    Rossy191276

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    Hi El-Squared in re-reading your post I am wondering if the people at the Stanford clinic gave any specific reason for not trusting the Lye tests...Do they think there is something fundament with the tests that are causing false positives in ME/CFS patients or is it that they lack adequate research backing validity?
     
  11. el_squared

    el_squared

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    Hi, I see a nurse practitioner there, Jane Norris. The doctor who heads the clinic, Dr. Montoya, is hard to see. I'm on a waiting list that may take a year or more. Jane Norris isn't that knowledgeable. I asked her to give me some concrete reasons why to distrust these tests. Their main line of argument is that the tests I took are not FDA approved. Keep in mind that Stanford is inside the insurance system. But I would love more details beyond the tests not being FDA- or CDC-approved. She eventually wrote back that there is a fear of contamination of the blood serum test I took, but I don't know where that came from. She probably got it from the CDC's statement about the test from several years ago. She also is just concerned about me launching into a Lyme treatment with tons of antibiotics that could worsen my microbiome, and that is a real concern. I'm stuck wondering who to believe now, the CFS clinic, or this functional MD who believes these tests are valid and that I should treat the Lyme.
     
  12. Rossy191276

    Rossy191276

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    Yes I would also love to hear more from experts on how the tests are done and what possible causes are for 'false positives'... I am in the same position as you...
     
  13. barbc56

    barbc56 Senior Member

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    Another consideration is the criteria that's used to diagnose a patient as having Lyme disease. Two doctors looking at the same test may differ as far as interpreting whether the test is positive or negative for Lyme disease. The same can be said for symptoms.
     
  14. IreneF

    IreneF Senior Member

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    For one thing, you need to live in or visit a place where Lyme is endemic, and you need to have done something that exposed you to ticks. If you spent all your time on the beach or shopping, or were diligent about tick checks, never had the concentric rash or aching joints or never even felt sick, you are unlikely to have gotten Lyme.

    Here's a map of the USA showing Lyme cases:
    http://www.cdc.gov/lyme/stats/maps.html
    Never left Utah (for example)? Your chances of getting Lyme are close to zero.

    Symptoms:
    http://www.cdc.gov/lyme/signs_symptoms/index.html

    From my reading, I've found that proper diagnosis is largely based on a patient's and symptoms, and not solely on a blood test, because the tests are not definitive.

    Info. on lab tests:
    http://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/index.html
    Non-approved lab tests are apparently not approved because they don't perform any better than the two-step immunoassay and immunoblot.

    Three bad things about treating Lyme disease when you don't actually have it:

    It costs money.

    It exposes you to the risks of treatment. Antibiotics have side effects! They also make you put on weight. (Not a problem for some people.)

    It puts you at risk of neglecting other conditions that could be serious, because everything is attributed to Lyme disease.

    It's possible that "chronic Lyme" is actually an autoimmune disease caused by a Borrelia infection that's been cured. No amount of antibiotics will fix that.

    There is much more info on the CDC site that you can explore. Wikipedia has lots of info. too.
     
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  15. bel canto

    bel canto Senior Member

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    We don't know much about the metabolomics test that will soon be offered to patients as a result of the OMF research, but it seems to be expected shortly. My hope is that it might give additional clues to help sort out some of the issues discussed here. It can't come soon enough!
     
  16. Shawn

    Shawn Senior Member

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    Post Lyme or Chronic Lyme is now starting to be regarded as an auto immune problem ,which would explain why many get no benefit even after ridiculous amounts of antibiotics.
     
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  17. wonderoushope

    wonderoushope Senior Member

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    @Rossy191276 - Did you see the SBS's Insight discussion on Lyme Disease in Australia? It sounds like a lot of the labs that test for this in Australia do not actually have proper means of testing/accreditation
    http://www.sbs.com.au/news/insight/explainer/what-lyme-disease-and-does-it-exist-australia and actually TV debate/discussion http://www.sbs.com.au/news/insight/tvepisode/tick-sick

    They talk about accreditation around30- 33.5 min mark in the show.

    I haven't been tested for lyme or anything similar, because I have been told that you can't test properly for lyme in Australia. But it does sounds like to me like ME/CFS cycles and perhaps you were just starting to improve anyway at the time of taking antibiotics or it could have been placebo. Just a theory (don't take my word for it).

    I go through cycles without any medication. Although my very first bout of whatever illness I have was brought on or exacerbated by probiotics. I got the worse herx reaction every and matches up to pretty much all the symptoms you get with CFS/ME. Over the last few years I got much better, but I go through cycles and my symptoms seem to jump around within my body with each cycle.
     
    Last edited: Nov 27, 2016
  18. voner

    voner Senior Member

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    @el_squared (Laura),

    One question you might consider is, "do I want to treat based on mostly symptoms or do I want to get more testing"? your test results are not real definitive.

    you also might try looking for another practitioner. it's possible you might find one that you can trust and respect their experience and opinions.

    chronic Lyme is such a quagmire.

    just to muddy the waters a little more, you might also consider these statements by Dr. Davis and Dr. Naviaux..

    here is the web link:

    http://www.openmedicinefoundation.o...-fatigue-syndrome-q-a-with-robert-naviaux-md/
     
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  19. Vojta

    Vojta Senior Member

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    @voner Too late for me. I got secondary mitochondrial dysfunction because of stupid antibiotics exactly how they describe it. It's a agony. If I got proper ME/CFS diagnosis before lyme quacks fed me poison maybe I would still have some chance...
     
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  20. Cheesus

    Cheesus Senior Member

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    The key problem is establishing whether these tests are at all capable of actually identifying Lyme disease. The companies frequently produce little or, in most cases, no evidence that the tests they are selling have any validity whatsoever. Anyone can setup a company and sell tests that they claim to do something, but unless someone produces some evidence that those tests correspond to reality, then we cannot know the reliability of the results, and a test with unknown reliability is inherently unreliable.

    I had a good look through the Lyme literature a a while back as I was considering testing, but I couldn't find anything compelling enough to make me part with my money. I simply would not trust the outcome of any test, and launching into an arduous treatment protocol with unreliable information was something I was unwilling to do, particularly as my medical history gave no indication that Lyme might be the culprit.

    If I were in your shoes, I would not want to go down the Lyme route without good evidence that I had an active infection. You do not have that at the minute.
     
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