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Lyme Disease and XMRV

Discussion in 'XMRV Research and Replication Studies' started by mezombie, Oct 13, 2009.

  1. darkrobot

    darkrobot

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    Thanks Rebecca.

    I know of at one borreliosis patient who was negative, but has not yet had the antibody test. I guess we'lll just have to wait and see... I hope any other lymies who have been tested will post their results on this thread, if they feel comfortable doing so.

    I'm really hoping to be XMRV negative, as I seem to be responding very well to antibiotics, despite going undiagnosed for many years. But either way, I would rather know than not know. Roll on the more accurate testing!
  2. redo

    redo Senior Member

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    Dr. Mikovits: 30-40% of CFS patients positive for Lyme. Am I missing something?

    I just read some more of the Q&A with Mikovits (see here).

    I hope I am not misunderstanding something. I know that they are testing already diagnosed lyme patients for XMRV. And they are also testing the CFS patients for a host of other diseases (and I guess lyme is one of them)...

    Here's the quote:

    Question; With the known % of CFS patients positive for Mycoplasma species (~60% in multiple studies), Chlamydia
    pneumoniae (~10% in multiple studies), HHV-6 (~30% in some studies) and other infections, is there any
    concordance with XMRV positivity?

    Answer from Mikovits: We have only done those analyses on the 101 in the original study, HHV6A was 10%, EBV ~14% and
    nothing else more than 10%. We are working with several groups at Lyme and those numbers may approach 30-40% of those tested.

    She's asked about infections, and it's the last sentence that I want to make sure that I get right.
    We are working with several groups at Lyme and those numbers may approach
    30%-40 of those tested.


    Now, there are two ways of interpreting that.

    • They are working with several groups [of CFS patients], and when tested for Lyme, 30-40% test positive.

    • They are working with several groups [of Lyme patients] and when tested for XMRV, 30-40% test positive.

    What do you think she means?

    English is not my native language. So I am not quite sure what she means with "at" in that sentence.
  3. awol

    awol *****

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    she is testing people with chronic lyme for XMRV, not CFS for lyme
  4. Advocate

    Advocate Senior Member

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    XMRV+ Doc's Thoughts about Chronic Lyme Disease

    Hi all,

    Jamie Deckoff-Jones, MD, has a new blog post on Lyme treatment.

    Her blog begins:

    She speculates briefly about the relationship between XMRV and Lyme:

    She gives many details about her own treatment and the different approaches her patients tried, and ends her blog with:

    Advocate
  5. gracenote

    gracenote All shall be well . . .

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    Advocate, this link will work if you add an h to the front of it (as in http).
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    When I first read it, I thought she meant 30-40% of XMRV patients are testing positive for Lyme, in the same way that 10% of the Science cohort was positive for HHV6A.

    However, reading it again, I agree with awol that she means 30-40% of Lyme patients are positive for XMRV (preliminary results). Her expertise is in testing for XMRV, not Bb, so it would make sense for her to apply her knowledge of XMRV to groups that have already been tested for and diagnosed with Lyme by other physicians or researchers.

    The phrasing is ambiguous, though. We'll have to wait for actual data to know for sure.
  7. Advocate

    Advocate Senior Member

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    Thanks, Gracenote. I fixed it.

    Advocate
  8. SunnyGal

    SunnyGal Senior Member

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    One of my Lyme doctors told me that about 50% of his Lyme patients are testing positive for XMRV via VIP Dx lab. This particular doc's patients are typically the ones that even docs who help patients that no one else can help have failed to help. The very difficult cases. Don't know if this might relate to his seemingly higher positive test rate or not.

    Sunny (positive for Bb, babesia, bartonella, a host of viruses, including XMRV)
  9. redo

    redo Senior Member

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    Yes, it's the other way around. It was my misunderstanding in the first place.

    If 100% of the CFS patients in the study had lyme, then 30-40% positive would be really high. Because the sensitivity of lyme tests are much less.
    So if one have chronic lyme, then chances for testing positive is normally less.

    But if she had used an especially good test (which are available, then 30-40% would absolutely be feasible).

    Sunnygal:
    That's great news.
    I guess this is on the culture, since the WB is not available yet.
  10. Athene

    Athene Never give up

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    I've decided to dig up this old thread instead of starting a new one. I've got some questions (which probably nobody knows how to answer)!

    Does anyone know of a document or website giving a plausible differential diagnoses for Lyme disease vs. CFS? Either based on symptoms, or on blood parameters? I have Googled and only found contradictory garbage, unfounded assertions etc.

    Is there any accepted version of the symptoms for either illness that has distinct symptoms? (e.g. Are joint pains part of the Canadian criteria for CFS for example, or could that be a clue to Lyme?)

    Has Rnase-L cleavage ever been found as part of Lyme disease, or is that definitely a clincher for CFS?

    Many thanks if anyone can give me any clarity on this. After a year of disastrous "treatment" for CFS I have decided to get tested for Lyme disease, kind of pinning my hopes on having some horrible spirochetes instead of an incurable virus.
  11. Parismountain

    Parismountain Senior Member

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    I've had a CFS doc Charles Lapp for 15 years. Early in that relationship I had a Lyme doctor, Nina Pearlmutter in Ft. Lauderdale Fl. One said CFS one said Lyme. I treated for two years heavy dose antibiotics for Lyme. I then moved out of Florida when the Lyme "cure" had me convinced I was croaking and needed to bring my family to live near other family before I died (that was nine years ago). To me it was left up to me what I had, I could choose either doctor's diagnosis. I stuck with CFS (I guess because the Lyme doctor was too far to travel to). How's that for deciding what you have eh?

    I wish I could get in a study at WPI, I'm having trouble with the financial aspect of being tested for XMRV. I might fit into one of those Lyme/CFS buckets (babesiousis too)
  12. redo

    redo Senior Member

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    It's good and important questions that you raise Athene.

    If you take a look at a random symptom list for CFS or a random symptom list for Lyme disease (stage III) and hold your hand over the title (where it says what the list is for), then it would be a 50/50 chance to guess which list belonged to which diagnosis.

    Meaning: The symptoms are pretty identical.

    The way the CDC use to prove that someone does not have lyme is to use a ELISA test. The test works good if you have been ill for a short time. But the test isn't validated for illness lasting over 6 months. So if you have been ill for more than 6 months, then you're out of luck...

    Personally I think many with Lyme also have XMRV, and the likely immune suppressing effects of XMRV makes the body incapable of producing antibodies in a high enough quantity to be detected by the ELISA. This is for stage III, which takes normally a year to go into. I think XMRV is a huge enabler for Lyme (just like HIV is for many other diseases).

    The symptom lists for CFS are far from perfect. And some have a FMS diagnose together with a CFS diagnose, and which diagnose doctors chose are also based on "medical trends" (in lack of a better word). The thing which is very special is that with ever other discovery of a widespread pathogenic microbe what used to be a syndrome is relabeled as a disease.
    But this didn't happen with the discovery of lyme in 1982. I think it's a result of poor work.

    The problems with lyme is sort of like a "perfect storm" in that the medical community finds out the following:
    - People who have been sick for longer then 6 months have a more "unclear" immune response to the disease.
    - People who have been sick for longer then 6 months does not recover of a short term antibiotics cure.

    They conclude that it's because the diagnosis is more uncertain (because of the weaker immune response) and they conclude that an uncertain diagnosis is why people don't recover of the short cure.

    The truth is, as I see it, that many have problems with producing antibodies after the infection has got a good grip, and I think the retrovirus recently discovered in CFS patients is widespread in lyme patients, and a prerequisite for getting serious symptoms from a lyme infection... (I think it's the XMRV which makes the lyme chronic, and I also think it's the XMRV which "camouflages" the immune response in lyme patients (they aren't able to produce enough antibodies for an ELISA to detect it - when they have reached the last stage).

    It has never been studied. But I can bet my house, cat and car on it: I am sure that they'd find exactly the same results in lyme patients as in CFS patients.

    Well, I got a lot of experience in the lyme realm. And what I can see is that most people get some 30-70% better. And some don't react to treatment at all (mostly those with ALS-like, or MS-like symptoms).

    From the experience I have, those with Fibro-like symptoms are those who respond quickest. Personally I think it's because the joints are outside of the Blood-brain barrier, so antibiotics can reach them readily. Neurological symptoms normally take longer to get to.

    Testing for lyme is hard. It's just as hard to rule out as it is to confirm. In the US, you have IgeneX which uses a test that measures specific bands on the antibody response (instead of using an ELISA which is much more dependent on huge quantities of antibodies to be able to detect it).

    There are many hypothesis why the ELISA don't work after 6 months. Another hypothesis (than XMRV inhibiting antibody production) is that in stage III there are much more antigens in the body, and the antigens attaches to the antibodies. So you cannot find large amounts of antibodies with the ELISA (but you can find immune complexes, which is a merged antibody and antigen). Immune complex tests aren't commercially available yet.

    Anyway, treating lyme is expensive. And in most cases it takes months to get better. And few recover completely with todays treatment regiments.

    Personally I think lyme in stage III in most cases is XMRV + Borrelia. And not just Borrelia.

    It puzzles me that so many get lyme, and the body handles it well. But with some all hell breaks loose. I think it's those who have a asymptomatic, or fairly asymptomatic XMRV infection to begin with.

    Personally I think XMRV stands for some thirty percent of the symptoms of CFS. And I think large portions of the CFS community have a spirochete infection. But with todays tests it's impossible to confirm or rule out. Because the tests only go on a indirect response (the immune response), so even if you find something, it can be called "an old infection" which is no longer relevant.

    It's first when we've got a good PCR for stage III lyme that we could see what the real prevalence is...
  13. rescindinc

    rescindinc

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    Hi KIdS,
    my name is tom hennessy, jr. i am a long time bed bound patient with M.E., CFS, MCSS, FMS, Chronic Lyme, Babesia, bartonella, and high titres to EBV. I was wondering how many of you ever lived near the big LYME hotspots of NYC, Long island, Connecticut beaches, Northern New Jersey? how many of you have read "Lab 257" about the infamous bioweapons lab that worked on hoof and mouth disease, and many bizarre illnesses that involve cattle and sheep. This secret government agency is located at the very tip of long island. It is called PLUM ISLAND. I lived just 8 nautical miles from there, when i got badly bitten by about 80 fleas or tiny ticks in college back in 1975. i received only 2 weeks of abx at the time. It took about 8 years for me to go down...from a 12 hour a day, 6 day a week worker, to a bedbound invalid. Also, does it seem funny to anyone but me, that our long term Insurance industry is mostly headquartered in Connecticut. all the "it's all in your head" talk often came from docs who were bought and paid for my LTD insurers. It is not just in our head folks, it is in our BRAINS! It was always the law, that if you were declared "mentally ill" that they had to pay you only two years for a lifetime disability policy. If you were declared physically ill and disabled, then they have to pay your claim until you were 65. I have heard that the democratic congress now has passed "mental health parity" so that new claims will get their lifetime payments. does anyone in the chronic lyme groups know about the results of this supposed law change? and on the XMRV front, at one time, in a world long ago, i was once an activist for people with these type of conditions. our little group, called RESCIND, Inc. started an international day of awareness for people with Chronic Immunological and Neurological diseases on May 12th, the birthday of Ms. Florence Nightingale, the founder of modern nursing. Old Flo was bedbound for about 50 years from her 35th birthday onward. she fought hard for sick soldiers of the Crimean War. We now have something like 285,000 sick soldiers from GWI. and we only sent 800,000 soldiers over there! now 1 in 4 is sick, and MANY are really sick, like many of us. We have heard MANY potential causes of these conditions over the past quarter of a century that i have been bedbound, and i like old Louis Pasteur's comment more than 150 years ago. He said, "the antigen is nothing, the terrain is everything". I think that any or many viruses, like entero viruses, polio viruses, protozoa, various bacteria, or other toxins, including chemical insults can trigger this HPA axis dysfunction that knocks our circadian rhythm out of whack and seems to strip the gears of our neuroendocrine systems like stripping the gears of a fine swiss watch. all of the gears of the watch are still there, but that watch will never tell time accurately again. I think that XMRV might be a factor or cofactor in some people. But, i HIGHLY doubt that all of us will be found positive for this retrovirus. I worry about folks getting to hyped up about this. I believe that Dr. Mikovits, and Silverman and Klein, and all the docs who are risking their reputations to delve into the black hole of M.E. and CFS research are smart, and hard working people. I can NOT say that about far too many of our CDC colleagues, after sitting across the table with them for much of the past two decades. We are not sick of being tired. but we ARE tired of being SICK! Good luck to all of you, and thanks in advance for any answers to the above listed questions. Ciao for now...TMH
  14. klutzo

    klutzo Senior Member

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    Redo listed a lot of excellent points.

    The only thing I have to add is that I doubt that anyone who did not have some kind of stealth infection would react to the right type of antibiotics with a "Herx", ie. the syptoms get worse. That does not mean it's Lyme. It could be mycoplasma, for example, but it does mean there is an intracellular bacterial infection. Many people think the best test for Lyme is a trial of treatment because of this.

    Being allergic to all of the useful antibiotics against Lyme, I used the natural one with the best research behind it, Samento. The herxing was almost unbearable, and once I got the dose to an effective level, I had 3 classic Lyme rashes in a row, all in the same place, which was the most common place people are bitten as well. I'd been told that could happen during treatment as the pathogen tries to escape. That was enough for me. I also had the then controversial Bowen QRiBb test for Lyme, which came back positive twice. It's successor test is now paid for by Medicare, but not other insurance, so the govt. must think it is valid. Most people still prefer the IgeneX test.

    My official diagnosis is Fibromyalgia. I've never seen an I. D. doctor, so I do not have a CFS dx, even though I qualify for one. I do believe I have CFS, because it was a flu that took me down and I never got up. My Lyme testing was done by an alternative doctor, so that would not be official either. I did not bother asking my conventional doctor, since he would have ordered the Elisa, which misses up to 70% of late stage Lyme.

    It is true that some people with Lyme don't herx, but they are very few. I would recommend a trial, if you can get a doc to prescribe an appropriate drug, ie. a beta lactam or macrolide antibiotic. It's cheaper than the testing and may be more accurate, IMO.

    klutzo

    P.S. To Rescindinc - I have read Lab 257:plum Island. VERY enlightening book, but I have never lived anywhere near there. My testing by an alternative doctor showed that I reacted to the Lone Star Tick, not the Ixodes Scapularis found in the east. I am pretty sure I was bitten in the Ouachita National Forest in Arkansas, but my immunity was good enough to keep it at bay until I came down with CFS 7 yrs. later in Florida.
  15. Lesley

    Lesley Senior Member

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    There is another short thread on this topic here: http://www.forums.aboutmecfs.org/showthread.php?5688-Lyme-Disease-and-XMRV

    I came across this on the Columbia University Medical Center website:

    I found this interesting because it comes from a Lyme doctor. The only comments I had heard about Lyme and XMRV prior to this were from Dr. Mikovitz. I believe she indicated at some point that 30% of Lyme patients they tested were positive for XMRV, and that treating both the Lyme and XMRV might be necessary.

    The quote is here: http://vesta.cumc.columbia.edu/lymed...p?sel=newsFeat The website is a good source of Lyme information.
  16. Cloud

    Cloud Guest

    Hi Tom, I remember your name from way back in this journey, and I'm really glad to see you here. Nice to hear an "old timers" experiences and perspective on things. I'm in California....in fact have spent lots of time in Tahoe over the years.....but I'm not one of the original Incline Village crowd. Got sick in 1994 following Hep B Vaccine. I have tested + for Bb, Babesia,, and xmrv. I spent all of 2009 on a drug called Vistide to Tx CMV, which was very helpful.....it pulled me back from the bed bound abyss. I have not read Lab 257...I'll check it out.

    Best,

    Cloud
  17. Parismountain

    Parismountain Senior Member

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    Hi Tom,

    I also posted here on page 12 of Lyme and CFS, I was born on Long Island, lived in East Meadow from 1960 to 1973 and would visit the beaches in Suffolk County regularly. I tested postive for Lyme and babesiousis in about 1999 so if I caught Lyme in Long Island I went 39 years without any antibiotics to treat it. I guess that's classic late stage as they call it.
  18. markmc20001

    markmc20001 Guest

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  19. Julia Rachel

    Julia Rachel

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    This might not be as "speculative" as we imagine. Stanford University has teamed with top International Virus Hunters from Columbia University in a study focussing on XMRV, Herpes Family Viruses (HHV-6A, EBV, etc) and strongly associated Lyme AND TICK BORN diseases not yet widely known about, rare viruses from ticks. I believe the thread you mention is ON to something.....http://vlgonvalcyte.wordpress.com/
  20. xchocoholic

    xchocoholic Senior Member

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    Thanks for the info here.

    I'm marking this thread for later. For some reason when I tried to watch it, a different thread got watched.

    Although many of my neuro symptoms have responded to diet, esp gluten, I wanted to look closer at lyme
    or other infections. I still have chronic fatigue, oi and pem.

    I noticed above that someone remarked that those with lyme and ms symptoms don't always respond
    well to lyme treatments. There is a connection between ms white lesions on the brain and gluten. I'm sure it's
    in theglutenfile but googling ms gluten will get those articles too.

    Fwiw tho, my lesions and my ataxia were gone one year post gfcfsf + chemical free diet.

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