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Lyme Disease and XMRV

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

  1. ChuckG

    ChuckG

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    Hanta

    When I was in Japan - '53 to '55 - a scary mystery disease was known to be sickening/killing GIs in Korea. Twas Hanta. Been causing humans problems in, at least, Korea for a very long time.

    Chucknberkeley
  2. Wayne

    Wayne Senior Member

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    Speculating or Hypothesizing ?

    Hi All,

    I don't get much of a chance to post these days, but I did want to mention that I very much appreciate Marie starting this thread. I'm of the opinion that when discussing ME/CFS, it makes sense, indeed, is even prudent, to consider the role Lyme disease may play for any of us. And as Jenbooks has been writing about (and apparently others over at Lymnet), it would further naturally make sense to consider that XMRA could quite possibility be a factor as well.

    I was diagnosed with Lyme (and some co-infections) about a year ago, and by my past history and progression of illness, feel I quite likely have it. I have not yet started treatment because I really don't know how to best go about it. I'm very hesitant about doing long-term antibiotics, and since learning about XMRA, I doubt that I would ever start any without first learning whether I test positive for XMRA.

    My understanding is that antibiotics can only reduce pathogen loads, and that the immune system must always deliver the final knock out blow, or reduce pathogen loads to a manageable level. I've hesitated on starting Lyme treatment with all its attendant huge stresses associated with Lyme bacterial dieoff (no matter whether the treatment be conventional antibiotics or "natural" herbs or other measures like Rife). The reason I've hesitated is primarily because I feel I would not have Lyme if I didn't have an underlying immune system dysfunction. And until I can effectively address this dysfunction, I'm not sure it makes sense to go through with a therapy that would only take me through part of the necessary treatment I may need. (And a miserable sounding part from what I've been able to gather). BTW, this is why I'm leaning toward low-dose naltrexone (LDN) as my likely next course of action toward improved health.

    I'm a bit puzzled why a discussion about possible connections between Lyme and ME/CFS & XMRA would be considered speculation. Wouldn't hypothesizing be a more accurate term to use? Isn't this how medical knowledge is expanded, by looking at certain things known and hypothesizing what possible implications there might be? I'm not a scientist by training, so I can't say whether I'm way off base on this or not. But speculating/hypothesizing seems to be a healthy way to move forward with any medical puzzle, especially one as complex as ME/CFS or Lyme or XMRA, etc. BTW, wasn't it "speculation" about possible connections between prostate cancer patients with a similar Rnase L pathway pathology as those with CFS that prompted the research which revealed the prevalence of XMRA in ME/CFS patients?

    I'm really tired at the moment, but hope to join in more discussion about this as time and energy allow. Thanks Marie for posting the Lymenet website address. I will likely go there and check it out. Also, thank you to everybody else who contributed here. I look forward to learning more from your experiences and research. And Jenbooks, thanks for all your "musings", on this thread and others. :)

    Best to All, Wayne
  3. Aftermath

    Aftermath Guest

    Lyme Disease on the Forum

    First of all, let me make one thing clear...

    This is a bald faced lie.

    Since I installed this forum software here on Cort's site this April, NO ONE HAS BEEN BANNED. As matter of fact, not a single post has been deleted on anyone.

    One of the main reasons that I approached Cort with the idea of doing a forum here on his site was what I viewed as ridiculous amount of censorship on numerous other ME/CFS related forums.

    Our goal here is a clear and open forum for uncensored discussion of ideas. As a close friend once told me, I learn most from those with whom I disagree.

    That being said, there are a number of things I do not want to see on this forum:

    • Posts consisting of personal attacks against other forum members
    • Posts in a subfoum that are unrelated to the topic description
    • Conspiracy Theories (US Gov't behind CFS, vaccines behind every single heath issue in the US, Infowars, etc)

    Discussion of Lyme Disease is fully welcome here. For right now, please confine it it to the Other Health News and Research Section. Eventually, we may make a separate Lyme Disease forum. I'm leaning toward the idea right now, but I am a bit concerned about "feature creep" and the slippery slope (e.g. losing our focus).

    Do I believe in chronic Lyme disease? Without question. As matter of fact, when I first got ill, I was accused of psychological problems by another physician in the same infectious disease group ar Dr. Gary Wormser (the villain in Under Our Skin).

    Do I think that there are people who have been misdiagnosed as having CFS that actually have Lyme? Absolutely.

    As matter of fact, earlier this year, I explored this possibility myself physician who is a past president of the ILADS and did 6+ months of abx (regrettably, it didn't work for me).

    In the end, I think the result will be a subforum here for Lyme disease with a topic description of "This illness often has symptoms very similar to ME/CFS and is an alternative diagnosis that should be explored."

    For now, what I don't want to see is individuals working Lyme disease into every single post about ME/CFS as it is our position that Lyme disease and ME/CFS are separate illnesses.
  4. jenbooks

    jenbooks Guest

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    Aftermath--a few thoughts

    Hi there. I agree with most of your points and want to say this is the best designed and user friendly forum I've seen. Thanks so much.

    My provisos are;

    1) A bit of flexibility on posting as sometimes topics do widen and encompass several themes or thoughts. At times Cort has kindly taken posts to create a new thread for us when that happens, allowing some continuity. I don't want folks to get anxious about where their post belongs and hesitate to post. With a general overall guideline and some flexibility we should be ingood shape

    2) my feeling about XMRV, Lyme, and ME is we will have a venn diagram with significant overlap. I think XMRV will account fir a significant subset of chronic Lyme cases. Some folks will have no tickbites and XMRV alone. However there is strength in joining forces since the likelihood is this will be a missing piece for the sickest lymies. In addition we all share a similar picture in terns of symptoms and suffering. So let's try for unity more than division.
  5. Wayne

    Wayne Senior Member

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    Lyme Discussion Format

    Hi Aftermath,

    I don't really understand the terminology you're using with words like "subforum", "separate Lyme forum", "subforum for Lyme"... etc.

    I would just like to mention that I hope Lyme discussion isn't relegated to a format like what was done with the "NEW DAY" situation. I find it difficult to keep abreast of recent posts there without having them show up on the main "new posts" link.

    I think what makes this database so great is that all these different categories can be created, but any new post on any of them will show up as recent entries. This makes them quickly available for all to see without having to visit many different areas.

    This may not be making sense, but I feel the more things can be kept "tight", the easier it is for me to follow. Have you thought about doing a poll to see what others might feel would be easier for them?

    BTW, I think it's too bad people have gotten the wrong impression about censorship on this board. It's clear this all had to do with the PH situation that was handled so badly. I'm happy to see that the kinds of dysfunction you outline will not be allowed here. Thanks for all your efforts in maintaining the integrity of this board (in so many different ways).

    Thanks, Wayne
  6. jenbooks

    jenbooks Guest

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    I agree with Min

    The good LLMDs don't treat presumptively. They do extensive testing. I'm sure there are charlatans out there but they are not the majority.
  7. markmc2000

    markmc2000 Guest

    forum vision/guidelines?

    Aftermath,

    maybe one forum thread could be posted/dedicated to educating people as to what the "vision and guidelines" are for the forum? Especially since we are all a bunch of brainfogged and otherwise mentally impared people.

    Mark

  8. mezombie

    mezombie Senior Member

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    Chronic Lyme discussions on this board

    Aftermath,

    I share your concerns and was ready (and still am ready) to pull this thread if the discussion was hijacked by people who insist everyone with ME/CFS has Lyme and if we don't accept that we simply want to remain ill. :rolleyes:

    At the same time, I do think it's possible to have ME/CFS as well as Lyme. I believe many of us harbor a number of pathogens that may be causing symptoms, including the bacteria and parasites associated with Lyme Disease, i.e. borrelia, babesia, etc.

    I started this thread because I thought there might be others like me who are wondering why, after many years, we are diagnosed with Chronic Lyme Disease yet aren't seeing the kind of improvement on treatment that is hailed by many as possible.

    It's because of this belief that I thought a discussion of XMRV and Chronic Lyme Disease, for those of us who have a diagnosis of both ME/CFS and the latter, was worth starting a thread for.

    Perhaps I was wrong. I hope not. Some of the posts here have been quite intelligent, and I thank those who wrote them. (Wayne, thank you for your supportive note.) :)

    I credit my jump from a 3 to a 4 on Cort's functional scale to antibiotics and antiparasic treatment as prescribed by an LLMD. At the same time, I know my brain fog cleared on an antiviral. I have some positive Igm bands for borrelia on the Igenex test. I tested negative for babesia but am being treated for that based on symptoms. It also appears that I have reactivated HHV-6 and EBV, as well as another parasitic infection.

    I am not quite sure what you mean about Lyme Disease and ME/CFS being separate diseases. I mean, my view is yes and no. One can have ME/CFS and Lyme, ME/CFS and MCS, ME/CFS and mycoplasma, etc.

    I realize not everyone will agree with my views. Hey, I don't share the views of everyone here, either! Yet I appreciate looking at ME/CFS from perspectives I had not thought of. So I think as long as the basic rules of decorum you have outlined here are followed there shouldn't be any problems.

    I think (hope?) we agree on how future discussions about the role of pathogens related to ME/CFS should be handled.
  9. myco

    myco Guest

    As matter of fact, earlier this year, I explored this possibility myself physician who is a past president of the ILADS and did 6+ months of abx (regrettably, it didn't work for me).


    Aftermath - 6 months of antibiotics is a very short trial run. I herxed for more than a year when I first began treatment then I saw clear improvement. What I am finding with CFS patients is that most were not on the proper combos of antibiotics to hit the bugs in all stages (cyst etc). For Mycoplasma, Chlaymydia Pneumoniae, Lyme, you need to be on a tetracycline (Doxy, Minocin), Zithromax and Flagyl or Tinidazole all at once for a lengthy period to bring down the bacterial load. You also need to address co-infections like Babesia (Malarone or Mepron/Zith) and Bartonella (Rifampin or Quinolone).

    If you go to Cpnhelp.org you will see that many with CFS or MS did not improve for a year or so after doing the Vanderbilt protocol. Doxy alone will not do it.

    Read about Mycoplasma and how long it takes to eradicate that pathogen. Symptoms will only be kept in check with Doxy alone. But if you hit it with the proper combo you have a good chance of eradicating it.

    My brain fog did not clear until my last phase of treatment after 2 yrs of abx. Rifampin and Zithromax brought an immediate clearing of all neuro symptoms and an end to post exertional fatigue.

    I look at it like this: Say we all have XMRV. Right now where we are in terms of treatment of a retrovirus like this you are looking at anti-retrovirals for many years and most likely indefinitely, which is very toxic to the body. Why not see a top LLMD and get an opinion and give the antibiotics a go if warranted? At least there you have a chance of recovering, which many, many Lyme patients do. What you don't realize is that many do, but they don't hang around lymenet anymore, they get back to their lives.

    Antibiotics are far less toxic than anti-retrovirals.

    We may all be positive for XMRV, but you need to get the bacterial load down no matter what.

    I was terrified of long term antibiotics and did everything I could before biting the bullet and listening to my dr. Herbals, tinctures, vitamins, IV C, mercury removal, all of it. When did I see improvement and a light at the end of the tunnel? After a year or so of antibiotics.

    And for all the naysayers out there...I was positive for CMV, EBV, HHV-6, Herpes viruses etc....Treating the bacterial infections got me back to living a full life again.

    I am really trying to help some of you.

    Be well.
  10. Wayne

    Wayne Senior Member

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    Lyme & Long-Term Antibiotics

    Hi Myco,

    I too feel somewhat terrified about doing long-term antibiotics, but have not ruled them out. I was wondering what the turning point was for you.

    I've read some of David Jernigan's literature, and he claims that if a person is experiencing difficult "herxing" from Lyme treatment, they are going about it wrong. He says he has seen many people with Lyme become worse after the extreme stress of long-term herxing.

    I've hesitated doing aggressive Lyme treatment because of these concerns. And now because I wonder if I should get tested for XMRV and treat it first before trying to tackle Lyme. What would you do today, given what has come out about XMRV and its possible connections with CFS and/or Lyme?

    BTW, I do believe you that you are trying to help us out. I would too if I had the positive experience you've had. I seem to remember however, that some people who've done the same treatment as you have not gotten better; in fact, have gotten worse. I sometimes feel so fragile, I think any type of aggressive treatment could tip me over the edge, so to speak.

    Thanks for your posts.

    Wayne
  11. myco

    myco Guest

    I was very fragile before I started. Could barely walk. But I tried to do a little exercise everyday, whether it was light weights or a walk.

    I took the antibiotics very slowly. First Doxy MWF for months. Had immediate reactions and knew if was hitting something. Then when I could tolerate that I added in Zithromax, Tues, Thurs. Eventually 6 months in I increased Doxy every day and did Zith MWF. This is when I turned the corner. People remarked how well I looked, my color came back, my exercise tolerance increased.

    Then I added the cyst buster Flagyl only for 5 days once a month. The Cpn website has the proper Vanderbilt protocol posted. But again, I would see a top LLMD first before doing this.

    The herxes were frightening some days, but certainly not as terrible as I thought they would be. Some days I felt almost normal, other days not so well. But NOTHING was as bad as I felt when I first got sick with CFS symptoms. That you must keep in mind.

    Once I turned the corner it was all uphill from there. I started in 06'. In late 07-early 08' I was functioning fairly normally. I dropped Doxy and that was a mistake (too early) and the brain fog came back. My LLMD tested me for Bartonella again (panic attacks and alot of anxiety) and it came back equivocal so he recommended adding Rifampin, which I did. My Neuro symptoms, brain fog and Anxiety was virtually gone within days. Rifampin also hits Mycoplasma and Cpn which I was positive for, so I knew I had finally crossed over a bridge in treatment. I have been on Rifampin and Zithromax for 5 months now and will be finished in 2 weeks. As I said in the post above, when I began I had over 60 symptoms, I now have 2. Some PVC's after eating related to an irritated vagus nerve and a squeezing spasm like pain in my head every once in a while. The twitching is gone, the post exertional fatigue is gone, the body temp is now 98.3-98.6 with no thyroid meds, I have my healthy weight back and good muscle tone, blood tests are normal, anxiety attacks gone, clear mind, everything.

    Take it from me, I was the biggest wimp of all when it came to antibiotics, but I listened to my Dr. and put some trust in him. Why? Because he had been just as sick as me at one time and now he is recovered. Before this I had seen more than 40+ Dr's and had no faith left in the medical system. He was/is a lifesaver for me.

    Be well.
  12. jenbooks

    jenbooks Guest

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    Advocate LLMD

    Hi CF. I wonder who recommended which so-called LLMDs to you. I know who I recommend. In my area it's always Kenneth Liegner, whom I've spoken with and whose 1993 article onborrelia demonstrated a deep understanding of the germ. When I sent a gal misdiagnosed by my holistic doc and everybody else she saw with cfs to him he did extensive testing of blood and ordered a spect scan. Given her childhood in CA he tested for the babesia variant WA1. She told me he put her on amoxicillin (if I recall, something like eight grams a day, enough to penetrate CNS) mepron and zithromax. She responded well and a year later was in her own words "reclaiming her life."

    I know he has given rocephin when necessary.

    Not everybody is so lucky as her or Myco, recovering on and able to tolerate orals. I hear of another woman formerly prominent in publishing who had well controlled MS (perhaps undiagnosed Lyme perhaps not) who got a tickbite and declined rapidly. By the time she saw him, a friend told me, she was too sick to tolerate antibiotics and nearly died on them. She developed other autoimmune issues too.

    Anyway a good LLMD wil take into account your history (living camping or travelling in endemic tick infested areas; history of tickbites or pets with Lyme etc), do the best testing for evidence of tickborne infections; order spect and other diagnostic tests and start with orals unless there is significant neurological or cognitive impairment.

    I feel some out there have a gunslinger attitude. I used to read Lyme MD's blog and be appalled. He actually wrote that a guy he put on IV had a pulmonary embolism he suspected was a 'heart 'herx'' but that thankfully the guy was none the worse for the wear. I say taking coumadin for a pulmonary embolism is certainly worse for the wear. On that same blog he said herxheimers were over rated and not that bad. He admitted that he and his patients were impatient and wanted results. I stopped posting comments there as it made him angry. He is apparently by his own admission already under investigation. Some call him an LLMD but he's only been doing it a few years. That shingle is loosely used. I don't think you saw a good one that's for sure. Maybe you saw a self-annointed one.
  13. Advocate

    Advocate Senior Member

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    New study on XMRV in autistic children born to CFS mothers

    There is also some discussion of XMRV/Lyme/Autism on StemCell_for_Autism2, a Yahoo list. Some parents have already made a deal with a lab to test their children, free. I wonder which lab. At their urging, I am copying their message:
    ==================

    Fwd with permission & this message may be forwarded furtherly:

    Hi
    I reached out to a president of a lab that is testing for the newly found XMRV virus which is being found ninety eight percent of the time in CFS. They have had small samplings in autistic children, also testing positive. I contacted him to see if I couldn't get him to realize, that maybe this virus is passed down to baby. I have CFS and two with autism. A typical MS is also involved in this virus. If you have these two situations, CFS and Autism in your children, please contact me?

    So, he offered to study the results of anyone with CFS who has a child with autism. All would be free. I would love if you can reach out to your lists, and facebook accounts, and let them know that they can test for this virus for free, for a study we are putting together. He was quite interested in the fact that this could be vectored in lyme ticks.

    The virus is a mouse leukemia virus, which acts as an immune depresser much like HIV, but non fatal persistent and slow. Many who have lyme often have fatiguing illnesses. He will expose the mouse to lyme infected ticks and see if those ticks carry the virus after biting the mouse who is infected with the virus. Then, he will test those with CFS and Autism...it would be especially intriguing if you also have diagnosees of lyme disease in both? If not, that's ok, just the CFS and Autism will do. I need around fifty families with this case history.

    I would need people in this study who have a diagnosis of CFS by their doctors, and of course children on the spectrum. I have contacted CFS groups, Autism groups, Lyme groups...if you have any pertinent people I can talk with, can you please contact me?

    Kathy Blanco
    kblanco1@...


    PLEASE PASS IT ON!!!!
  14. hvs

    hvs Senior Member

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    Hi, James. The big difference is that while EBV really is ubiquitous in the general population (maybe 90% of adult w/ antibodies), almost no healthy person has XMRV (maybe 4%).
  15. myco

    myco Guest

    Wayne,

    If you are seeing an LLMD and were diagnosed with Lyme and co-infections PLEASE DO YOURSELF A FAVOR and start treatment. It is a natural reaction to fear antibiotics. I tried every herbal, supplement, homeopathic treatment I could find before I finally bit the bullet and went on antibiotics. I am not going to lie to you. The die off was horrific. It took almost three years (I treated Borrelia, Babesia, Bartonella and Mycoplasma) of moderate levels or oral antibiotics with supportive measures to get well. But guess what? In 2004 a very well known CFS Dr. diagnosed me with CFIDS and sent me home with b-12 shots to my bed. I never got out of the bed with his treatments for my "viral infections". In 2009 I work full time, go to gym 4x a week and have no post exertional fatigue or other fatigue for that matter. Would I go through the hell of antibiotic herxing again? In a heartbeat. I have my life back. Many CFS patients have never been to an LLMD or been tested. I personally have no idea what they are waiting for. If the whole XMRV scenario is true, then we are looking at a retrovirus and we know what that means. It means a lifetime of HIV related antivirals with no cure in the immediate future. If I were a practical man, I would certainly explore what Lyme and co infections I might have and rid myself of those first and see how I feel then. They are certainly not going away on their own. Think about it this way. If you had syphillis wouldn't you treat it? What's stopping you? Be well my friend.
  16. citybug

    citybug Senior Member

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    I think the topic of XMRV and Lyme should be kept in the XMRV section. (I don't think I have lyme after testing and trial antibiotics but) it is my top question for WPI researchers. Cort reported that they tested panels of viruses in the original research, but haven't seen if they checked bacterias. They looked at other groups and cite what percentage they have with the virus. I haven't heard any mention of lyme yet. I think it should be one of the groups tested as they did for autism. Also WPI is going to be a neuro-immune hospital. Won't this be one of their areas? I hope there is space on their research questionaire to talk about this.
    There could also be a CFS in lyme thread.
  17. Marylib

    Marylib Senior Member

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    For Myco

    Hi Myco,

    Could you detail for me what were the dosages and times per day, etc. that you used with each of the antibiotics?
    Many thanks
    Marylib
  18. myco

    myco Guest

    Again, I recommend any CFS patients who are interested to see a Lyme Literate Medical Dr. ASAP. It would be very irresponsible to list dosages etc...on the internet. You need to be tested and treated by an LLMD. I do not understand the concept of trial antibiotics. 1-6 mos of Doxy is not going to show you much either way.

    You need to treat Borrelia and most likely all of the co-infections. Do the research. Typical meds would be Doxy, Minocin, Zithromax, Rifampin, Flagyl or Tinidazole, Amoxycillin, Mepron or Malarone. That would pretty much cover Lyme and all co-infections in different combinations.

    Antibiotics are much safer than typical antivirals. Lyme testing is below substandard at this point and any LLMD worth his salt will tell you it's a clinical diagnosis. Ticks, black flies, mosquitos, fleas, can all spread these pathogens.
  19. Robin

    Robin Guest

    First of all, I'm glad you recovered! Congratulations on finding something that worked for you.

    Second, I think what you said about Lyme being a clinical diagnosis is a big reason why many people are hesitant to jump into long term antibiotics. If chronic lyme is invisible to bloodwork then how do you know you have it when the symptoms are virtually the same as CFS? Would a LLMD agree that they are two different illnesses? How would s/he differentiate?

    Antibiotics are safer than antivirals but there are still risks with long term use. I can think of two right now (chlostridium difficile, which my grandmother passed away from this spring, and associated increased risk of breast cancer) but I'm sure there are more. Insurance companies may balk about paying for the antiobiotics, so the cost is something to consider, as is the possibility of the antiobiotics not working/making the symptoms worse. As wonderful as your recovery is, there are people who don't get better on antibiotics. And, with any treatment that is of long duration there is the possibility that improvement is coincidental, especially within (Dr. Bell's famous) five year window.

    I think that patients need to explore all of their options, and a chronic Lyme disease and antibiotics are definitely worth investigating. I don't want to be discouraging, I'm just pointing out that it's not necessarily a simple decision.
  20. Jerry S

    Jerry S Senior Member

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    Great discussion!

    Wayne wrote:

    I totally agree, Wayne. Thanks marie! This discussion was a great idea!

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