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Lyme Disease and XMRV

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

  1. mezombie

    mezombie Senior Member

    East Coast city, USA
    There is a thread on the XMRV findings over on the Lymenet message board that contains some interesting speculation on the relationship between this new retrovirus and Lyme (as well as other pathogens often found in ME/CFS). The thread got of to a shaky start and there are a number of OT posts on it, but parts are worthwhile reading.

    For those interested, it can be found at
  2. Aftermath

    Aftermath Guest

    It's definitely possible, as is a connection to autism.

    But is it plausible? Not right now, as there is no research indicating this.

    Right now, all of this is nothing more than wild speculation--everyone needs to keep that in mind.
  3. mezombie

    mezombie Senior Member

    East Coast city, USA

    Lyme Disease is a clinical diagnosis and I suspect just about anybody with ME/CFS would be diagnosed with it if they went to a Lyme Literate MD. The symptoms are identical.

    The only benefit of a Lyme dx is access to antibiotics, which may or may not help. They may help because of their anti-inflammatory properties; not for the reason they are prescribed.

    The tests for Lyme are notoriously unreliable. That includes testing at IGeneX, the supposed "gold standard".

    So I don't consider a discussion of Lyme and XMRV any more speculative than the ongoing one in this section concerning XMRV and ME/CFS.
  4. MEKoan

    MEKoan Senior Member

    Hey Marie & Aftermath,

    While I agree that we are all doing a great deal of speculation on many topics, many people who are currently being treated for "Chronic Lyme Disease" are long time CFIDS patients.

    I have never persued a Lyme diagnosis myself but the only treatment which has been truly helpful in my illness has been tetracyclines, the same class of antibiotic used in Lyme treatment.

    To do some of my own wild speculation, chronic infections in root canals have been speculated as a potential "cause". Certain other common infections seem to be more prevalent and stubborn in our population: chronic bladder and sinus infections, for instance.

    It could well be that infection with XMRV impairs one's ability to clear bacterial infections, including those associated with ticks, or that Lyme patients are, as Marie suggests, benefiting as I do from another effect of tetracyline therapy.

    Yes, this is speculation but there is bound to be much speculation as we all struggle to make sense of our experience, our diagnoses and the recent research. Given the state of the science, we could say very little if we did not speculate.

    Peace out,
  5. Kati

    Kati Patient in training

    A friend of my sister has chronic Lyme disease, quite severe apparently, but what's interesting is 2 of her children have autism, one with the severe form. Wouldn't that be nice if the 3 of them tested positive for XMRV, and could go back to a normal life?
  6. jenbooks

    jenbooks Guest

    As a lyme patient with many friends/peers/acquaintances who are lyme patients I can tell you that the sine qua non of chronic lyme is profound fatigue. Including the feeling you're going to die of the fatigue, can't move, must lie down, etc etc. I always said my mitochondria were dialed down from 10 to 5 or something like that--they just refused to function past a certain point of exertion. And I got very very ill within a few weeks of a known tickbite with bullseye rash.

    I suspect that this virus can be transmitted by ticks from mice and/or human hosts, and that it is the key to the mystery as to why some get lyme and get over it in a few weeks or even months and others are completely felled getting slowly sicker and sicker over time and collecting more and more coinfections and pathogens.
  7. mezombie

    mezombie Senior Member

    East Coast city, USA
    Post-Exertional "Malaise"

    Yup, ChronicallyFatigued, Post-Exertional "Malaise" (PEM) may be the essential difference between Lyme and ME/CFS. There are an awful lot of Lymies on Lymenet that actually exercise because they feel better afterwards!

    Not me! If I overdo physically, I can't move. And I mean that literally. There is no communication between my brain and my muscles. I am pretty much paralyzed.

    Jenbooks, profound fatigue like you describe is one of my symptoms, but just one of many. It is the one that the abx prescribed by my LLMD has actually helped. This treatment has not helped the PEM at all, though.

    But I have huge cognitive impairment, so bad I can barely put together a sentence to post here. Processing information is extremely difficult for me. And I used to make my living reading, analyzing, and writing. I was... well, let's just say I used to be very smart. My IQ has dropped by at least 40 points. The Lyme treatment hasn't put a dent in these symptoms.

    As to transmission, who knows? You may be right. I'm leaning toward the theory that XMRV suppresses the immune system and allows all sorts of dormant infections to reactivate.

    Kati, I'm so sorry to hear of your friend and her children. Yes, it would be nice if XMRV was found to be the cause of all their symptoms and treatment followed. We will have to be patient and wait for more research, I think.

    Koan, I'm so glad antibiotics help you! I know of quite a number of ME/CFSers who feel better while on antibiotics. They usually discover this while being treated for some acute infection unrelated to their ME/CFS. Who knows why?

    And thank you for reminding us that all discussion of XMRV is speculative!
  8. JamesNYC

    JamesNYC Guest

    Hello everyone

    I just dropped in from and thought I'd say "hi".

    My mystery fatigue symptoms were "diagnosed" as CFS back in '87. My Dr told me I was one of the few patients he'd seen who actually had it (instead of depression I guess).

    Since then I always wondered if I had lyme because the symptoms were so similar. My test in '88 was negative.

    Anyway, I wanted to chime in on the Post-Exertional "Malaise" symptom. It is true that it is not necessarily associated with lyme itself. But it is a VERY signature symptom of Babesiosis.

    I was able to exercise throughout my years of "CFS" (which was episodic). However that changed in '05 and I started having Post-Exertional "Malaise". I was finally diagnosed as infected with lyme and babesia last year.

    I can really tell the difference in symptoms. Babesia really makes you feel worse with exercise. Regular antibiotics don't work against Babesia which is a protozoan like malaria. So someone treated for lyme and not babesia will still have fatigue problems.

    Most of the people with lyme have more than one infection. Babesia is a very common co-infection.

    As for XMRV, while it's intriguing, they have a long ways to go before it's proven to be the cause of CFS. Remember, back in the mid-80s EBV was suspected to be the cause. I run into people even now that think that.

    The most important point is the acknowledgement that CFS has a real cause, and it's not just all in our heads.

    Thanks for letting me post.

  9. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    A few points...

    - Having Borrelia and other tick-borne infections injected into you by a tick could be one of the triggers that "activates" a dormant infection of XMRV, acquired earlier in some other way. Hence Lyme and this virus could very well be connected.

    - It's possible that some meds used to treat chronic Lyme and co-infections also have action against XMRV. For instance, Cheney mentioned that artemesia--commonly used for Babesia--inhibits XMRV replication.

    - Lyme meds could also treat other problems arising from XMRV infection. E.g, David Bell wrote once in his newsletter that doxycycline has action against HHV6-A (which could be reactivated by a retrovirus). One of his office workers felt those treated with doxycycline during the Lyndonville outbreak had a better prognosis, though I believe Bell himself wasn't sure.
  10. JamesNYC

    JamesNYC Guest


    Well, sure, why couldn't someone have XMRV and lyme and co-infections.

    But isn't there a lot of jumping the gun here? So many people are acting like XMRV is proven to cause CFS. Why is this?

    Every article I read about XMRV said that while they have found it in people with CFS, a direct connection as a cause of CFS hasn't been established yet.

    Have I missed something?
  11. jenbooks

    jenbooks Guest

    Lyme, CFS, James

    James I saw your post on lymenet where you speculated that this is a CFS board without much respect for lyme and that you might get banned for posting here. That's not the way this site is. There are a # of lymies on here (people who got sick after a tickbite). And this board is not like PH.

    Having said that, I'm beginning to think XMRV may be the missing link for some chronic lymies who don't seem to get better on antibiotics or relapse off of it. I have never found a good enough mechanism to explain the antibiotic resistance that one sometimes finds. Even tuberculosis usually succumbs to regimes less drastic than some lymies are on. The same with babesia--people are on various drugs for quite a while and can still relapse as soon as they go off. A retrovirus that is immunosuppressive as the gatekeeper might explain this (to me anyway). And it would explain (to me anyway along with variation in strains and thus virulence of borrelia) why some folks I know had a 2-week bout with lyme and went on with life just fine, and others were bedridden.

    Consider that MLV is a mouse leukemia virus. I know we've manipulated MLV for use in gene therapy and other laboratory cell line work and I wonder when we started doing it and if we inadvertantly played a part in it jumping species. In any case, ticks feed on mice and humans, and perhaps that's another way that a mouse virus eventually jumped species.

    In any case, 4% of the general population--though high--and 98% of CFS patients (some of whom are probably undiagnosed lymies)--is a disparity so huge it is meaningful. I never believed in the EBV "yuppie flu" explanation because everybody has EBV. Thus it seemed it was simply a reactivated virus.

    The truth will out, over time.
  12. JamesNYC

    JamesNYC Guest


    Yes, actually it has gotten much better, it may be gone. Before treatment I felt like I was carrying a 50lb pack around. Everything I did took effort. I had forgotten what it was like to not have that feeling.


    Someone else posted that they were banned for talking about lyme on this board. So that's why I wondered if I would be too. Several people over there said they had bad experiences over here.

    I'm glad to hear that incorrect and it's not like that here. CFS and lyme have much in common, especially the dismissive way many in the medical field treat us.

    There is evidence that different strains of lyme cause infections of different severity and symptoms. Also, the effectiveness of treatment has a lot to do with how soon someone gets treatment.

    Many lyme suffers never got adequate treatment. The length of treatment necessary for severe cases is much longer than originally thought. The same with babesia.

    I do not buy the idea that antibiotics have an effect on a virus. I find it a convenient rationalization to explain positive results.

    Viruses will apparently often just mutate and jump species. This happened in the early 90s with hantavirus. Suddenly people were dying from it, yet it was known only as a rodent virus. But not all strains could jump to humans, and only a relatively few people have gotten it.

    Also, there is a virus carried by deer ticks. A man in upstate NY died from it in May. You can see an article here:

    So, what happened to all the people who got "Yuppie flu" in the 80s and then were given the basket label of CFS like me? Some may never have gotten better, but most did.

    My symptoms would come and go. Eventually the episodes got shorter and shorter and would be triggered when I was run down and under stress, similar to another virus, herpes. It was quite manageable.

    But in my case, the symptoms suddenly got much worse after I was reinfected with lyme in Nov '07 (I took a tick off me and had it tested).

    So, I have no doubt that I have lyme and babesia. But the strange episodic nature of my symptoms which is not typical in lyme could mean I have XMRV, or some other virus too.

    I feel like a lab rat. :)

  13. JamesNYC

    JamesNYC Guest

    Episodic CFS

    Now this has got me thinking...

    Can someone direct me to the proper forum to find out if others have CFS in episodes? Or tell me if this is a common story?

    I have no idea if anyone else has experienced this with CFS. My Drs sure don't.

    In some ways, it defies the definition of "chronic".
  14. jenbooks

    jenbooks Guest

    Banned, No, James

    They were talking about ProHealth, not this board. Nobody has been banned here. If you go back and read that thread carefully you will see which board they were talking about.

    As to: "There is evidence that different strains of lyme cause infections of different severity and symptoms. Also, the effectiveness of treatment has a lot to do with how soon someone gets treatment.

    Many lyme suffers never got adequate treatment. The length of treatment necessary for severe cases is much longer than originally thought. The same with babesia.

    I do not buy the idea that antibiotics have an effect on a virus. I find it a convenient rationalization to explain positive results."

    Yes there is evidence of strain variation, and Luft at Stonybrook isolated a virulent strain he claims cropped up in Europe and here at the same time (given that its vector borne and an ocean lies between us, something sounds fishy there as to how it happened). Also, how is it that a virulent strain strikes one family and not the family down the street? Although neighborhoods and towns are clearly endemic and have lots of lyme, even so, I don't think the ticks with the virulent strain would stay at one house. There is something very peculiar about that I've never understood. I've tried to explain that to myself with genetics but that's still been a hard sell.

    As to early treatment--I was treated within twelve days of a tickbite (walked in a Connecticut garden where deer go, got a bullseye rash twelve days later) and it was meaningless.

    As for antibiotics and virii, there are a # of ways they can affect bacterial infections. You can buy it or not, but it's physiology and it's real.

    For instance: take XMRV which they say is upregulated by cytokine expression. Some antibiotics downregulate cytokines. Thus by doing that, they might cause the body to be less stimulating to reproduction and virulence of XMRV. Or other viruses. In fact, Cheney is apparently speculating that artesunate will help reign in XMRV by downregulating the major inflammatory player, NF Kappa B. Whether he's right about that who knows.

    Second: It's quite possible that bacterial pathogens and virii are synergistic--that they send off signals that make them replicate more rapidly and switch on genes that allow them to become more invasive and virulent. If your antibiotics quell a bacterial infection, the signals the bacteria are sending out that may theoretically stimulate a virus, may be quelled too and the virus may calm down.

    Third: Who knows.

    I'm not suggesting as a few others have that tickborne illness is now not real. It's real and awful. But I'm just wondering why.

    I'm glad the babesia treatment worked for you. I find it very discouraging to hear how long people have to be on treatment and how many relapse. My point being--how is it that a few bugs in ticks are all so virulent, so vicious, and so resistant to drugs that the drugs have to be taken in high doses, multiple drugs and longterm? Is it just some weird coincidence that ticks are carrying a bunch of highly resistant bugs? Not one, but four or six? And what exactly is rendering them so resistant? And if that's the case how come a lot of people just skip through the raindrops, get a tickbite, take a few weeks of antibiotics, and sail merrily on? Did their ticks not have those same bugs--ever?
  15. _Kim_

    _Kim_ Guest

    Annette Whittemore said in this article, "What also is known about this virus allows us to say it cycles on and off, which is why patients can feel good temporarily and then relapse."

    On/off cycles have certainly been the case for me.
  16. kansas_K

    kansas_K Guest

    Hard to confirm, hard to rule out

    Most often the situation is that the patient comes to the so called "LLMD" because they have good reason to suspect Lyme, but are denied help.
    I am sure there are some who get wrongfully diagnosed.

    Seventy percent who are infected can't recall a tick bite. And that's a quote from our ultra conservative government health officials.

    About 50% of those who find out that they are infected have had a bulls eye. Again, a government quote.

    There does not exist a sensitive and specific blood test to reveal if you have Lyme when you have been sick for more then a year. All the tests are for the initial phase of the illness. None of the test suppliers for serologic tests have any data on how those who've had it for a long time responds.

    What works for early disease, is not proven to work for late disease. All which is standardized is for early disease.

    The mistake everyone does is to mix late and early disease.

    Here's some symptoms of early disease:
    Fatigue, headache, flu-like feeling.

    Here's some symptoms of late disease:

    Persistent swollen glands
    Sore throat
    Sore soles, esp. in the AM
    Joint pain
    Fingers, toes
    Ankles, wrists
    Knees, elbows
    Hips, shoulders
    Joint swelling
    Fingers, toes
    Ankles, wrists
    Knees, elbows
    Hips, shoulders
    Unexplained back pain
    Stiffness of the joints or back
    Muscle pain or cramps
    Obvious muscle weakness
    Twitching of the face or other
    Confusion, difficulty thinking
    Difficulty with concentration,
    reading, problem absorbing
    new information
    Word search, name block
    Forgetfulness, poor short
    term memory, poor attention
    Disorientation: getting lost,
    going to wrong places

    Speech errors- wrong word,
    Mood swings, irritability,
    Anxiety, panic attacks
    Psychosis (hallucinations,
    delusions, paranoia, bipolar)
    Light sensitivity
    Sound sensitivity
    Vision: double, blurry, floaters
    Ear pain
    Hearing: buzzing, ringing,
    decreased hearing
    Increased motion sickness,
    vertigo, spinning
    Off balance, tippy feeling
    Lightheadedness, wooziness,
    unavoidable need to sit or lie
    Tingling, numbness, burning
    or stabbing sensations,
    shooting pains, skin
    Facial paralysis-Bell's Palsy
    Dental pain
    Neck creaks and cracks,
    stiffness, neck pain
    Fatigue, tired, poor stamina
    Insomnia, fractionated sleep,
    early awakening
    Excessive night time sleep
    Napping during the day
    Unexplained weight gain
    Unexplained weight loss
    Unexplained hair loss
    Pain in genital area
    Unexplained menstrual
    Unexplained milk production;
    breast pain
    Irritable bladder or bladder
    Erectile dysfunction
    Loss of libido
    Queasy stomach or nausea
    Heartburn, stomach pain
    Low abdominal pain, cramps
    Heart murmur or valve
    Heart palpitations or skips
    Heart block on EKG
    Chest wall pain or ribs sore
    Head congestion
    Breathlessness, air hunger,
    unexplained chronic cough
    Night sweats
    Exaggerated symptoms or
    worse hangover from alcohol

    Symptom flares every 4 wks.
    Degree of disability

    These are just some of the symptoms. I have never found a ME/CFS symptom which is not also a Lyme symptom. And never have I seen such a overlap before.

    It's very, very hard to rule out Lyme. And it's equally hard to confirm Lyme.
  17. kansas_K

    kansas_K Guest

    Do you have any source for this? I'd like to know more!
  18. myco

    myco Guest

    All I can say is that I was diagnosed with CFS in 2003 and sent home at 32 to "go home and rest". I had all the common viruses BUT I also had Mycoplasma Pneumoniae. I had post exertional fatigue, was practically bedridden.

    I tried low dose Doxycylcline over a number of months and steadily improved after the normal herxheimer reaction. Then a friend suggested I see a Lyme Literate Dr and I tested "equivocal" for Lyme and Bartonella.

    I went on Lyme and Bartonella drugs for several years at normal doses and now have no problem with post exertional fatigue. I go to the gym 4x a week, live a normal life. I only have 1 symptom left out of a laundry list of all of the above.

    I saw the best CFS Dr. in the US and he had me on b-12 injections, vitamins, herbs all aimed at viruses. Did very little for me.

    You decide.
    Aerose91 likes this.
  19. jenbooks

    jenbooks Guest


    It's not as simple as "you decide."

    My former hyperbaric doc--her family got bad lyme on their wooded New England property. They did hyperbaric, and all the right antibiotics and antimalarials, just like you. They are still very ill and homebound today.

    Clearly there are a # of pathogens out there. What I want to know is this: are the lymies who are the sickest also infected with XMRV. It would explain a lot.

    In addition, what you call "normal doses" of antibiotics are a lot for some people. Not everybody can tolerate years of antibiotics. Depends on your genetic detox ability.
  20. myco

    myco Guest

    What I am saying is that many people accept the CFS diagnosis and don't even get tested for Lyme or see an LLMD who can properly prescribe the right combo of antibiotics.

    Many self treat with Doxy and alternatives but really need a good LLMD to get better.

    My two cents.

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