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Lyme Disease summary: 30% of PWC have Lyme?

Discussion in 'Lyme Disease and Co-Infections' started by Sasha, Aug 21, 2010.

  1. Sasha

    Sasha Fine, thank you

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    On another thread, Joanne60 kindly posted a link to a very interesting and thorough blog post that she has written because many of us (me included) were saying we didn't know much about Lyme Disease.

    She wrote:

    Following this thread it saddens me that many people don't seem to be aware of Lyme Disease or Dr Joe Burrascano.

    As according to research 30% of people diagnosed with ME/CFS can actually have Lyme Disease I decided to write a post on my blog to sumarise and give a link to Burrascano sumary for anyone who is interested.​
     
  2. Sasha

    Sasha Fine, thank you

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    I came down with a mild illness while in North Carolina/Virginia for a few weeks that required me to rest in bed for an hour or so every day. I just felt under the weather - I don't recall any other symptoms at all. Then I returned to the UK. A few months later I got what seemed to be the flu, complete with fever, sore throat, raised glands etc. and classic ME.

    I was tested (in the UK) for Lyme via a blood test but it came up negative.

    I'm wondering if I should consider Lyme ruled out or not. I certainly got bitten by a load of stuff while in the US - chiggers, fleas, etc.
     
  3. Min

    Min Senior Member

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    Thank you. I have Lyme diagnosed privately; my UK NHS test came back with a false negative.
     
  4. Frickly

    Frickly Senior Member

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    I was just diagnosed with lyme after nine years of going to doctors and given the label CFS. I was tested for lyme every six weeks for over a year showing one band positive (this is negative according to the CDC standards). I finally had a lyme test through Igenex which was found positive. Since then I have found that it is considered a miracle by many lyme patients to get a positive because of the testing standards set by our government. They are testing the wrong bands. I also here from many lyme positive people that if you show one positive band that you have lyme. I think it is very likely that the 30% could be much higher. It could be that our immune system can't fight these bugs as healthy people do so they keep multipling. Good luck in finding an answer.
     
  5. Sasha

    Sasha Fine, thank you

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    Thanks, Min and Frickly - have you had your Lyme treated? Has it made any difference?

    I'm wondering whether to pursue this (after all, plenty of people were getting bitten by the same bugs as me and didn't get sick) and if so, how aggressively - if Lyme is only a small part of my picture and treating it would make no difference, maybe I should wait for XMRV to pan out...

    Even a 10% increase in health for me would be huge, though. Can just see a big struggle ahead if I can't go via the NHS.

    Any advice on how to find a private Lyme specialist in the UK?
     
  6. Jenny

    Jenny Senior Member

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    I was diagnosed with Lyme at the Breakspear hospital in the UK. The test they used (from Immunosciences) has since been withdrawn and I'm sceptical about its validity. Other tests, including dark field microscopy were first positive then negative on two occasions.

    I've been on abx for most of the last 3 years, including 12 weeks IV rocephin and various complex combinations. I'm progressively getting worse. I know many others who have had no improvement from Lyme treatment, despite testing positive.

    My so-called Lyme literate doctor now says I've probably got rid of the Lyme (but I still have the same symptoms, more severely) or I never had it in the the first place.

    There is a huge amount of controversy about Lyme testing and treatment. We need much more evidence about the accuracy of the various tests and about the effectiveness of different treatment options.

    FWIW I think it's likely that we've collected several different viral and bacterial infections over the years, because of immune dysfunction. Some of these perhaps haven't yet been identified, and others (like mycoplasma) can't be tested for in some countries (I haven't been able to get a test for this in the UK.). For that reason I think it's worth trying abx on an empirical basis without necessarily accepting a Lyme diagnosis.

    Beware of expensive tests which have no evidence of validity.

    Jenny
     
  7. illsince1977

    illsince1977 A shadow of my former self

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    I had a positive IGenex test, and was mostly treated just for Babesia (a co-infection you get from the tick bite that is a malaria like red blood cell parasite) despite never having a positive Babesia test. According to my doctor, I had Babesia symptoms and it was possible to have a species they couldn't test for. While treatment did help my headaches improve slightly and reduced my intermitent air hunger, it didn't prevent my root problem of a debilitating lack of energy from returning. The treatment was oral Azithromycin and Mepron. Neither of these is given specifically for Lyme. Doxycycline is the preferred oral antibiotic for Lyme. My CD57 count (the indicator my doctor uses to tell if we are getting rid of Lyme) returned to normal without specific Lyme antibiotics, but I am bedridden again for the second time since supposedly getting rid of Lyme. I don't think it's the root of most of our problems, but obviously it is for some. That's always the question, isn't it? Which category do you fall into? For a refreshing and highly educated view on this question, I would highly recommend you read what Dr. Jamie Deckoff-Jones says on the issue: http://treatingxmrv.blogspot.com/2010/06/open-letter-to-ilads-from-former-member.html
    I find her blog to be truly enlightening politically and appreciate her unique perspective as a doctor, a patient and the mother of a patient, on why we patients either don't get treated or get mis-treated.
     
  8. carolwxyz99

    carolwxyz99 Senior Member

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    I'd be interested to know the references for this research. I found the email but it did not state the source.

    I was diagnosed with borreliosis in the UK in 2003.
     
  9. Joanne60

    Joanne60

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    Yes sorry the research was not quoted but I think Kenneth Friedman a reliable source although I have read as much on Lyme charity websites before but of course when you want a specific reference you can't find one anywhere.
    Sam Donta says
    ' A number of influential doctors and researchers have noted the link between chronic fatigue syndrome and Lyme disease. Dr. Sam Donta, a bacteriologist and an infectious disease specialist who is the Director of the Lyme Disease Unit at Boston Medical Center, and has acted as a consultant to the National Institutes of Health (NIH), is one of these. In a lecture presented to Mass. CFIDS/FM Association members on November 3rd, 2002, Dr. Donta explained that chronic fatigue syndrome and Lyme disease are almost indistinguishable due to the similarity in symptoms. After successfully treating many patients diagnosed with both of these illnesses, he believes that Lyme disease is an important cause of CFS, along with other infectious agents such as mycoplasma species and viruses, such as Epstein-Barr Virus (EBV). Dr. Donta advocates long term antibiotic therapy of 12-18 months, and sometimes 24-36 months, for Lyme disease. He also believes that a 6 month trial of this antibiotic therapy in those diagnosed with chronic fatigue syndrome is warranted.'

    read the full article here
    http://www.ei-resource.org/lyme-disease-and-environmental-illness/

    another interesting article here
    http://www.afme.org.uk/res/img/resources/IA 55 Lyme Disease.pdf

    Sarah Myhill's comments
    http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=13020&B1=EM061709F

    Anyone diagnosed with Borreliosis/lyme Disease and later developing ME/CFS symptoms would do well to consult with a lyme literate medical doctor, in the UK the Breakspear would be the best place to start especialy as they do treat ME/CFS as well as patients with Lyme disease.

    They are learning all the time and working with ILADS doctors in USA to find the best treatments for their patients. They have come a long way in the last few years although clearly some people do not fully recover which is why Burrascano is suggesting for some XMRV/HGRV may well be also causing problems.

    Certainly there is much more info available about lyme through the various national charities the most significant points being the blood tests are not reliable to rule out Lyme and that infection can persist despite short courses of antibiotics. See http://www.ilads.org/
    presentations to IDSA review with research referenced.
     
  10. Joanne60

    Joanne60

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    I should have said that anyone living in UK may like to pop along and look at Eurolyme chat line if they think they could infact have lyme and ask some questions there then do report back here and let others have the benefit of your experience.
    http://health.groups.yahoo.com/group/Eurolyme/

    Another interesting statement

    I am a board certified rheumatologist and internist with a special interest in the rheumatic
    presentations of infectious diseases, an interest sparked during research conducted for an M.S. in
    biochemistry at Loma Linda University in 1982. Since graduating from the Georgetown University
    Hospital Fellowship in Rheumatology in 1993, I have devoted my career in finding the underlying
    causes of some of the more common rheumatic diseases, including fibromyalgia, chronic fatigue
    syndrome, rheumatoid arthritis, reactive arthritis, autoimmune diseases and vasculitis. Over time,
    it has became progressively clear to me that in treating patients with a variety of rheumatic
    presentations, in the majority of rheumatic diseases and probably the majority of all degenerative
    diseases (such as diabetes, high blood pressure, dementia, strokes, heart attacks, kidney failure,
    cancer, etc.), which are significantly on the rise today, stem from a combination of genetic
    predisposition and environmental triggers, collectively known as the individual’s phenotype. This
    leads to the development of the theory of complex causality in which the genotype may interact with
    chronic infective triggers causing in some a phenotypic presentation of rheumatic diseases. Of the
    various types of infection that I evaluate and treat in my rheumatology practice, Lyme disease is the
    most progressively disabling to individuals. The disseminated form of Lyme disease is a systemic,
    multi-organ persistent infection I refer to as Lyme Complex, one very much underestimated by
    research centers.

    In my rheumatology practice alone, I have seen and diagnosed Lyme infection in patients presenting
    with fibromyalgia, chronic fatigue syndrome (CFS), chronic immunodeficiency fatigue syndrome,
    polymyositis, polymyalgia rheumatic, temporal arteritis (TA)U, rheumatoid arthritis, Reiter’s
    syndrome, reactive arthritis or spondyloarthropathy, and Systemic Lupus Erythematosis (SLE).
    Other diseases include Wegener’s vasculitis, chronic asthma, chronic sinusitis, chronic headache and
    migraine syndromes, chronic neck pain, lumbago, Irritable Bowel Syndrome (IBS), Inflammatory
    Bowel Disease (IBD, both Crohn’s Disease and Ulcerative Colitis), Hashimoto’s thyroiditis, Lou
    Gehrig’s Disease (ALS), dementia, Alzheimer’s dementia, and seizures. Many physicians in the field
    that treat patients with disseminated Lyme disease share these observations. This list is not
    exhaustive, either. IDSA does not recognized that tick-borne diseases can cause clotting, stokes, or
    heart attacks. It is therefore unacceptable to allow them to restrict diagnostic criteria and treatment
    Guidelines before they fully define the actual disease. Doing so would exclude too many factors
    involved in the disease, and would condemn many patients to disability and a life of pain and
    suffering by limiting diagnosis and treatment options.

    http://www.ilads.org/lyme_disease/written_testimony/11%20Zackrison-Arthritis%20Recommendations.pdf?action=ViewDetails&ItemID=22#search="ME CFS"

    The above was presented to the IDSA review hearing by Leila H. Zackrison

    Suzanne Vernon PhD gave a talk on Chronic Fatigue Syndrome (CFS) which she has studied extensively. It was stated that there are many parallels between CFS and Lyme including the lack of a bio-marker. Vernon noted that CFS is a diverse group of conditions. She has developed a model of the condition in which disturbance of the HPA axis is central.
    Comment: CFS affects around 4 million Americans and the severity of the illness is such that many are incapable of work. How many CFS patients have symptoms attributable to tick borne illness is not known. Even if the proportion is small the Public Health implications would be significant.

    http://www.ilads.org/about_ILADS/2008_conference.html

    Garth Nicolson PhD has spent many years working in the field of Chronic Fatigue Syndrome (CFS) like diseases and has highlighted the importance of Mycoplasma in the past. Mycoplasma can be found in ticks and is another co-infection for Lyme. Prof. Nicolson presented data relating to NTFactor, a commercially available nutritional supplement which may help some patients with persistent fatigue.

    http://www.ilads.org/news/ilads_archives/4.html

    Q&A With Dr. Shor

    by Scott Forsgren

    What percentage of the previously diagnosed CFS patients that you see may actually be dealing with chronic Lyme disease?

    Confidently, 50% or more of my CFS patients may have Lyme disease as the underlying cause of their illness.

    http://www.publichealthalert.org/Articles/scottforsgren/Dr Sam Shor.htm

    case study

    Patients with symptoms that are consistent with chronic fatigue syndrome should be seriously evaluated for the potential of chronic Lyme infection. Common features in both conditions include profound fatigue, sleep, and cognitive impairment, along with fibromyalgia and dysautonomias, In addition, if chronic Lyme is determined to be present, then evaluation for the potential of co-infections with Ehrlichia sennetsu, Bartonella henselae or Babesia microti should be undertaken. In doing so, we are more likely to effectively reverse the chronic, often debilitating processes with which our patients are so often presenting.

    http://www.cfids-cab.org/rc/Shor.pdf

    Hope you find that interesting but I am sure there is much more.
     
  11. Lesley

    Lesley Senior Member

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    I became ill in 2005 and my daughter became ill in 2007. We were both diagnosed with CFS and POTS. In the past few months, we have both been diagnosed with Lyme. We have started treatment, but it is too early to evaluate the results.

    As I have researched Lyme Disease, I have been amazed at the nearly identical lists of symptoms. I just wish our CFS doctor had considered the possibility of Lyme more carefully.
     
  12. Sing

    Sing Senior Member

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    Serious Caution With Lyme Treatment

    Beware, folks. A word of serious caution.

    I went to a Lyme literate doctor (LLD) who said that in his experience almost everyone who thought they had CFS actually has Lyme. Given this view, he naturally considered my symptoms evidence of Lyme. He saw to it that I had the best testing and repeat testing, but my results were ambiguous, right down the middle in terms of Positive or Negative, even by his lights. The antibiotic therapy he put me on was increasingly difficult to endure; I felt worse and worse. In the Lyme world this is called HERXing and is supposed to mean that you are killing off the infectious agents. At some unspecified point you are supposed to start getting better.

    What I learned from this LLD was that there are no accurate tests--at best the testing may be only 60% accurate, and even this isn't certain. It is possible to show a negative result and have Lyme and it is possible to have a positive test and not have Lyme, he said. The diagnosis of Lyme is still a clinical diagnosis--that is, based on symptoms and the doctor's opinion. He said that the only reliable indicator that someone does have Lyme is that they get better on antibiotics. How long they have to be on antibiotics before showing signs of improvement is unknown.

    So, to me, who never remembers a bulls eye rash, who never had fevers or rheumatic symptoms in my joints, sweats or visual disturbances common with Lyme, who never believed she had Lyme but knows she has ME-CFS, who was ever-sickening and wearing down on long term antibiotics, I thought:

    What the heck is this? A damaging, expensive treatment requiring massive control around diet and timing of all the pills and supplements, for an illness which has no proven, reliable test, no timeline for treatment--this seemed like a big leap in the dark to me! Further, that with long term Lyme, there is not considered to be a cure but only temporary improvement with antibiotics in a chronic, relapsing illness requiring future courses of antibiotics on into the sunset...?

    I left after months of worsening with antibiotics, declared myself done with the treatment and never went back. It took me some months to recover the degree of energy and wellness I had prior to antibiotic therapy. I have never "relapsed" since then, as the Lyme doctor predicted, but continue on my steady way with ME-CFS.

    I am sure some people do have Lyme and some improve on the antibiotics. But to equate all ME-CFS with Lyme and to promote and proselytize this extreme treatment for other people without a definitive test or a time line for improvement or an endpoint for success is to me, seriously irresponsible. As a personal choice, it may be worth a try. However, given the desperation that many with ME-CFS have and the difficulties that most of us have with cognitive processing, it is very important to let people know up front and unambiguously that there are few certainties and no guarantees in both the diagnosis and treatment of Lyme Disease

    I learned this from my own experience and from a highly regarded LLD.
     
  13. Joanne60

    Joanne60

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    Perhaps this is why some people with ME/CFS/Lyme don't get better.

    Hi Burrascano has sent second e mail found on Madison area Lyme Support group
    http://madisonarealymesupportgroup.wordpress.com/2010/08/22/dr-joseph-burrascano/

    Second email:

    Hello!
    Thanks for letting me know there is a buzz about this going on.
    I am not part of the WPI (Whittemore Peterson Institute) but I do have an interest in HGRV (formerly known as XMRV) because I strongly believe it is an important contributor to what we know as chronic Lyme. I also believe it is involved in some way with autism and CFIDS, and possibly other so-called “neuroimmune diseases”.
    What is needed to further the study of HGRV is to set up clinical trials, because so far, all formal work on this virus is being done in the labs. To accomplish this, we are in the process of setting up a clinical working group, to consist of an alliance between researchers and clinicians. I was invited to join this group- of course, I accepted.
    That is the scoop- please feel free to forward this note to any interested parties.
    Thanks!
    Dr. B…………………….!

    Contact Colleen Nicholson 516-286-7196

    Research Assistant to Dr. Burrascano, MD


    burraj51@bigplanet.com


    post on my blog and other info about Burrascano
    http://lookingatlyme.blogspot.com/2010/08/xmrv-hgrv-mecfslyme-disease-update.html
    http://lookingatlyme.blogspot.com/
     
  14. Seeker

    Seeker

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    I agree w/many of you on this thread! It could certainly be upward of 30% w/CFS do indeed have Lyme, largely because the CFIDS docs weren't very experienced in test-ordering for tick-borne infections, and many/most Lyme Literate docs weren't properly looking for viruses!

    It really is irresponsible for any doc to say all CFS/ME is due to Lyme! And even tho babesiosis is known to cause fatigue, it can be very hard to capture on tests since there are many more strains than there are tests for. It took me 3 tries (and several different testing methods) to get positive babesia results. And those w/HLA DR1 may not make Lyme-specific antibodies: http://www.ncbi.nlm.nih.gov/pubmed/11532615

    My initial test for Lyme (at Igenex, western blot) showed no bands! But from that same blood draw, Lyme PCR by MDL was positive & culture also positive. I was making antibodies against both kinds of ehrlichiosis. Fibro was my dx at this time. I later tested positive for bartonella & babesiosis (wait until week before full moon - sorry if that sounds strange, but someone shared that w/me & it worked), as well as EBV & CMV reactivations.

    If someone was bitten in the NC area, please also research STARI - a tick infection found mostly in the southeast U.S. that really looks like Lyme.
     
  15. Sing

    Sing Senior Member

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    Thanks for the specifics, Seeker! This is what will help people out--really refined testing for a start.
     
  16. Seeker

    Seeker

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    DE
    Sure - no prob:)
     
  17. carolwxyz99

    carolwxyz99 Senior Member

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    Thanks for the links Joanne. I have come across these before and quite a few in your other post. I have been trying to collect actual references on links between ME and Lyme for years, but have been out of touch for a couple of years recently when I had some other health problems, so was wondering if there was anything new. There are many docs who are reporting that certain percentages of their CFS patients have Lyme. But I have yet to see a study.

    There are a few more but I do not have references to hand.

    1. Burrascano at 2007 LDA conference in Leicester in the Q&As with a UK doc thought 60% of CFS patients probably had Lyme.
    2. Research by a Polish researcher showed that 70% of patients with Lyme borreliosis have symptoms of CFS - and this was proper research in pubmed.



     
  18. carolwxyz99

    carolwxyz99 Senior Member

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    Thanks,

    It is interesting that Burrascano is getting involved. I have read somewhere else that he thinks a lot of Lymies have XMRV. Burrascano has always been a believer that Lyme in chronically or severaly affected patients is a multiinfection illness.

     
  19. Jenny

    Jenny Senior Member

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    This is an ad.
     
  20. taniaaust1

    taniaaust1

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    take care.. lyme tests can also be false postives due to contamination (i guess that is why they say one has to have a certain amount of bands before it is seen as positive.

    i do thou think quite a few with CFS/ME do in fact have lyme as it can be hard to test for. Ive also known some who found out they had lyme and not CFS, improve greatly with treatment.

    The statistic thou is that 10% of lyme cases end up with CFS/ME (lyme can be a trigger for it just like mono can be). In these cases, lyme treatments dont fix things.

    Apparently only 50% (i think it was) get the rash!
     

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