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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The Hammer - Vistide and Dr. Peterson

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Cort, Jul 20, 2009.

  1. mojoey

    mojoey Senior Member

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    ross

    to be honest, I'm a bit surprised as well. I asked pretty specifically, "what do you think about HPA dysfunction? do you think it's primary or secondary to immune dysfunction?" And he said secondary without blinking.

    I almost wish he'd said primary because at the moment I'm leaning toward the neuro-endocrine-immune school of thought (literally top-down).

    I'll definitely try to ask him more about this the next time I see him (hopefully Friday).

    However, is he doing anything to treat your HPA axis? Or does he believe treating the immune dysfunction will right the ship through a negative feedback loop?
  2. Cort

    Cort Phoenix Rising Founder

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    Great report - thanks so much.

    So immune dysfunction is it! Too bad! Much better if it was one or the other pathogens. Instead you have to re modulate immune functioning - probably in some people one part of the system of in one part of the system down. Tricky stuff. Great news about the viral array though - did you take it or are you waiting?

    Even if HPA is secondary that low cortisol functioning has got to be inhibiting the search for pathogens - does it not? I wonder if he goes the bio-identical cortisol route?

    Post infectious ME/CFS patients do not get better from antibiotics....I can think of a few cases where that's not true but I would bet its true in general - otherwise we'd be talking about it alot more (?) (Of course there's the De Meirleir abx regime - short stints of abx to get at the gut bugs plus all the gut factors- a different thing entirely?)

    I wonder what he would think about me; no infectious onset but a mother who died early of an autoimmune disease and a cousin of hers who had severe MCS decades ago.

    He believes that once he sees your test results he'll have a good idea of how well you'll do on his protocol?

    He sounds like an impressive guy. He was certainly impressive in Reno.

    What do you attribute your increased health to?
  3. jenbooks

    jenbooks Guest

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    Joey--thanks for taking my PM 'critique' to heart. It's not that all your musings are not valuable, but for me personally, I was able to absorb and understand this post very well and retain it. Some of the others are still a blur to me.

    You know, from what I know of the study I mentioned somewhere on this site, which is by Roger Pittman at Harvard/Mass Gen, on identical twins one of whom went to Vietnam and one who didn't--all of whom had smaller than normal hippocampus--and the Vietnam vets got PTSD and the stay-at-homers didn't, it's got to be both pathogens & HPA/neuro endocrine pre existing vulnerability.

    Your body won't just go AWOL without inputs from the environment, such as pathogens, toxins, or extreme stress. So even that sexual/child abuse thread has some merit, it's just overdone by the CDC. But in a genetically vulnerable child extreme abuse could surely derail the system, upregulate the cortisol, screw up the HPA axis, lead to chronic limbic activation, *and* with the right methylation or detox or other vulnerabilities as well, lead to CFIDS. That's probably a minority of people so badly abused.

    For most of us I think there is an infectious trigger, or a series; and for others, a toxic trigger, or a series. Cort, I still don't see why you couldnt' have unknowingly picked up lyme in your jogs in the woods in California where it turns out lyme is endemic. There *could* be an infectious trigger. OTOH maybe not. You haven't progressed, it seems, and your CFIDS aspect is not nearly as prominent as your MCS aspect, so who knows...

    What is cool about Joey's report about Peterson is all those vials of blood, all the thorough testing. How many of us get that? I haven't heard of anybody getting a blood draw like that so I hope Joey will post his results (scan in jpgs) and the doctor's detailed analysis.

    I've been following what Joey has been doing as best as I can. I recall an early post of his that a relative of his was somewhat mystical and also believed in sun-gazing (am I right, Joey? Or do I mis-remember?). He did Bionic 880 in Europe and then he began working with someone who does ART testing here. The way he's handling ozone, which can be very tough as Mike noted, for some of us who don't detox well, says to me that his detox systems were always pretty good.
  4. mojoey

    mojoey Senior Member

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    Hi Cort

    Always great to hear your feedback. Your experience and knowledge are very helpful.

    I haven't gotten the viral array yet... but he said within a few months.

    I am waiting to hear back from Ross (above) about whether Peterson has done anything about the HPA dysfunction. If the treatment is similar to a doc that considers it primary to immune dysfunctions, the theoretical means do not really matter right? But it would mean he doesn't conceptualize the disease in terms of a PNS/SNS disorder first, which would affect the overall direction of your treatment if immune modulation didn't lead to full recovery.

    So you had a gradual onset?

    Yes he actually said once he has all the markers, he'll have a very good prognostic idea. We'll see.

    best,
    joey



  5. froufox

    froufox Senior Member

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    Hi all,

    Very interesting discussion, I can relate to a lot of what people are saying about the endocrine/immune/neuro link as I am in exactly the same position and wondering what my priority is either to bugs or HPA axis. I keep relapsing following initial improvement from anti-microbial treatment, and I feel this is definitely due to poor endocrine function.

    Ross thats great that you've had some improvements, I just wanted to ask you did you have low cortisol before commencing your treatment? Are you on immune modulators or anti-virals? Sorry I havent managed to follow all of your posts.

    Thanks for the feedback on Dr Peterson Joey, it will be interesting to see how things progress for you under his care.

    Also does anyone know if Dr Peterson uses Transfer Factor and if so if he has had any success with it?

    Thanks.
  6. mojoey

    mojoey Senior Member

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    jen and ross

    I will get more of an idea of the man as I spend more time with him, but my preconception at the moment is that his greatest strength can be a definite weakness in cases where his initial treatment doesn't work. He is open minded but utterly reliant on research. He is so involved in his own personal research, that sense he doesn't have time and energy to sit around and consider too many other theories. We're lucky to have a non-biased aerial view of research being done & give each theory impartial consideration.

    Jen--

    Yes I've traveled quite a bit of the spectrum from woo-woo to hard-core diagnostics. At this point I don't feel consider resting on either end's laurels, which propels me to reach out to new doctors more often than most other patients. I also rely largely on gut feeling..when I feel like I've plateaued with one doctor, I don't try to push more out of the relationship. I do feel like the high turnover can be beneficial to patients that wanna hear about these doctors though.  
  7. mojoey

    mojoey Senior Member

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    transfer factor

    Peterson said they work well in theory but never panned out in practice.  Im a case in point--that was my first anti-EBV, HHV6 therapy, but I quickly plateaued after 3 months.
  8. mojoey

    mojoey Senior Member

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    Cort-

    What has been most helpful for me has been photon therapy, ozone, and other Klinghardt therapies.
  9. froufox

    froufox Senior Member

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    Ok thanks Joey, thats a shame the improvements were not long lasting for you. I've been recommended to take the Multi-Immun one from Researched Nutritionals which looks good but we'll see!

    Cheers
  10. KC22

    KC22 Senior Member

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    MoJoey-

    I read your entire blog on Dr. Peterson and found it fascinating. There seems to be a lot there for all of us to learn from. I am looking forward to following your results of your testing and what he does for treatment.

    Thanks for being so thorough in sharing this with us!!!!
  11. hvs

    hvs Senior Member

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    Ya, Ross, that's the rub, isn't it? A genetic weak link makes good sense (though I don't see it in my family). But it doesn't account for the outbreaks we've seen, which statistically are as likely as lightning striking the same person twice. I also have trouble with it personally because either I somehow "got" this from my spouse or we beat 1 in 122,500 odds that we would both end up with it (assuming 1% of the pop. has this). (By the way, my spouse's viruses were different: EBV and CMV(?) while mine are EBV and HHV-6.)

    I'm not suggesting any answers, only that given strong hints of this being communicated I don't see how it's simply a genetic predisposition + a crisis or unassociated infection. :confused:

    [By the way, I think this is a very good reason for the CDC to keep obfuscating: if it is revealed that they spent 25+ years hiding or denying this devastating _communicable_ syndrome as it passed through the population it might cost some awkwardness in Atlanta.]
  12. Cort

    Cort Phoenix Rising Founder

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    What a fantastic discussion. It's so great to have people willing to share in depth their experiences with Dr. Peterson.

    Cortisol - Personally I can't think that cortisol is a fundamental factor in this disease. The research on cortisol it's pretty good - unlike much of the immune research it generally shows positive results; this indicates to me that cortisol problems are certainly factor in this illness but the values are still typically mildly low. (I know Dr. Holtorf thinks they're lower than they seem.) No ones been able to show how mildly low cortisol levels could have such a devastating effect.

    On the other hand cortisol does help regulate the immune system; so low cortisol is going to throw it off to some extent. One study suggests that if you have low cortisol levels you won't get much benefit from mind/body therapies. Then again not too many people think mind/body therapies are going to eradicate ME/CFS! Dr. Taylor is measuring cortisol as people with infectious mononucleosis come down with this disorder; it'll interesting to see when the low cortisol shows up!

    Personally one Dr. felt that my cortisol levels are pretty darn low but bio identical cortisol just made me jittery.

    Yes gradual onset over a couple of months - a partial recovery - then a big relapse. Got emaciated. Did a strong mind/body type therapy (EST TRAINING) - which helped get me going again - but never resolved the illness.

    Ross - congratulations on getting those test scores back to normal. Where are you overall lab wise? Do you still have some scores that are out of whack? Or are you looking good on all your labs? (If you are that would suggest of course that we need better tests - no surprise there! ).

    JenBooks - maybe the best case for my not having Lyme disease is that I'm still kicking around (?) It's interesting that when my MCS went bananas about 13 years ago it didn't seem to affect my ME/CFS at all. My fatigue did not get worse - it was almost like two separate processes occurring.
  13. froufox

    froufox Senior Member

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    Hi Ross, thnx for your reply, its good to hear of all of your improvements since being on anti-viral treatment and it makes sense that getting rid of your CNS infection has led to significant progress for you on the endocrine front. I guess it depends on the the level of adrenal insufficiency as to how quickly someone makes progress and how deep the infections are. I have longstanding viruses and lyme & co too so I expect it will take a while before my adrenals bounce back fully but it is encouraging to hear of your progress.

    I hope that you continue to improve, all the best.
  14. Cort

    Cort Phoenix Rising Founder

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  15. Jill

    Jill

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    Hi Cort

    you said the link would go to a story of a Dr Peterson patient who is doing well. The link didn't work for me. Is it possible for you to double check it. Many , many thanks for setting up this site. Writing all the way from New Zealand!
    best Jill
  16. Cort

    Cort Phoenix Rising Founder

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  17. hvs

    hvs Senior Member

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    Vistide

    Okay, folks. I'm having a hard time finding the right moment to sit down and offer an extensive re-cap of my vistide experience, so I've decided that a summary is better than nothing...

    First, let me preface what I report with the fact that what works for me will NOT work for you (necessarily). While there are cause/symptom consistencies across MECFS cohorts, there are many important differences. AND, while there is basic consistency across the Incline (my) cohort itself, there remain important differences. After all, just because there is some kind of neuro-immune problem across the board in this subset, it doesn't mean the various "screw-ups" in our bodies will be the same. (Because this is the case, I strongly suggest that you visit one of the few docs in this country who are good diagnosing this beast, Peterson, Klimas, Lapp, maybe some others.) Sex, age, duration of illness, etc. etc. will be different between you and me.

    Another preface: Dr. Peterson is extremely careful. He understands that vistide is potentially toxic to a patients' kidneys (though he thinks it's safer than valcyte). That's why he follows a rigorous protocol for delivering the medicine and monitoring the patient constantly between infusions. Vistide is tough, but for those of us who have been incapacitated by this disorder, are on disability leave from work, etc. etc. it is right. The emerging specter of heightened lymphoma risk in Incline cohort patients is another consideration....

    Final preface: I have EBV and HHV-6. Someone else in my household was diagnosed as Incline subset 6-7 years ago and set right through valtrex and immune globulin back then.

    So, prefaces issued...

    ***

    Began Vistide with Dr. P in August. First dose was a trial to see how I would tolerate it and the probenecid. Checked kidney and liver levels every other day for a week. Passed with flying colors. Second dose a week after the first.

    Very soon thereafter I was feeling a 4 (on my personal arbitrary scale); usually feel 2 (can't sit up to eat) or 3 (a couple flights of stairs would induce vertigo-inducing weariness). ...No way was I gonna attribute that to the medicine after 1 1/2 doses. Not a chance. I'm too skeptical for that.

    4 was the tops I'd felt throughout my illness; I'd felt 4 for a lovely week here and a nice week there. Never more than a week.

    But another week passed and another. Stayed at 4.

    In mid September I had to attribute the 4 to the vistide; I just had nothing else to which I could attribute staying at 4 for an unprecedented stretch. I could remain sitting upright comfortably for long periods. Had much greater endurance for standing upright. (My problem was never OI, just debilitating weariness from the effort.)

    Began to be able to endure walking more; doing little chores that needed to be done around the house. By late September it occurred to me that I was at 5. In other words, I am running at about half-speed. I've never seen 5 since I fell ill. Stairs, extended careful thinking, extended childcare, etc. etc. are a bit rough and all demand recovery time; but reaching this level is really really pleasing. It's just enjoyable to do some common, everyday things you don't think about when you're healthy.

    So, it's been not quite two months and I've gone from a 3 to a consistent 5, an all-time high since I got ill. I can't wait to continue my infusions; I can hardly remember what 6 feels like.

    ***

    Again, vistide is not a magic bullet, but for those of us in this well-defined, specific subset who've been overrun with viruses, it could be really helpful. (See Ross's reports of his experience, too.) I hope that I can report more progress soon.

    P.S. I should repeat that I continue to do labs three times a week without fail.
  18. KC22

    KC22 Senior Member

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    Hi HVS,

    Very good!!! Your summary was interesting. So glad to hear you have moved to a 5, and in CFS terms, in a fairly short amount of time.

    Have you ever tried valcyte? I have been on it for 1 1/2 years and not sure it's working.
    Did you have a lot of viruses? or mycoplasma p.?

    Thanks for sharing this info.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi

    Just in relation to people talking about hpa axis and neurological things being a cause of cfs as well as viral infections, from what i have read cytokines produced from viral infections can cause alot of these neurological symptoms, they can be somewhat stimulating giving that tired but wired feeling. When others have had some symptom relief from doxepin, klonopin, lyrica etc, i think these things help curb the effect of these cytokines, even b12 has this effect, but as always everyone is different.
    I still think going after these viruses is the ticket, myself i have had good improvement with probenecid and famvir although not 100%.
    Being in australia leaves us limited in treatment, I am envious of the amount of cfs docs in the states who are willing to try these antiviral treatments, just hope it becomes recognised world wide then theres a chance of these treatments in Aus.
    cheers!
  20. acer2000

    acer2000 Senior Member

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    For the people on Vistide. How did Dr. Peterson decide that you have CMV? Was it based on the Wisconsin Viral tests that he does? Titers? Labcorp? I am curious what criteria he uses to decide to try someone on Vistide?

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