Pure speculation

One of the best parts of this journey from a medical point of view is that it is based in hard science. It is the first time in my career, including training and sixteen years of emergency medicine, that voodoo has taken a backseat to the basic science. If one applies the knowledge we have about HIV to CFS, we have a pretty good model from which to consider our approach to treatment.

Read the Mogensen paper linked on the sidebar. Then read it a few more times. The keys are in that paper. It’s all the result of  persistent immune activation (plus gene modification?), however it may manifest in a particular individual. I came up with the following system based model, better than symptom based, but still more complicated than it needs to be in order to consider therapeutics.

The myriad symptoms of CFS can be sorted into general categories based on pathophysiological groups. Here is my first pass at this, with examples of symptoms, not close to exhaustive, in parentheses. The categories provide a framework for considering pathogenesis and may present strategies for a multi-pronged approach to therapeutics.

  • Vascular spasm (migraines, flashbacks, black outs, dysautonomia, microvascular angina, dysrhythmias, GI symptoms, Raynaud’s)
  • Inflammation (depression, sleep disorder, cognitive deficits, fibromyalgia, malaise, OI, IBS/IBD, “swollen brain” possibly related to CCVSI, interstitial cystitis)
  • Neurodegeneration (sensory overload, sensory neuropathies, cerebellar degeneration, neuropsychiatric manifestations, neuropathic pain, MS)
  • Immune activation, derangement (activated viruses, tick-borne diseases, almost autoimmunity, antiphospholid syndrome, Hashimotos’s thyroiditis, late neoplastic transformation)
  • Hormone depletion and receptor insensitivity (cortisol, androgens, insulin insensitivity, LH insensitivity leading to progesterone deficiency in women and testosterone deficiency in men, hypothyroidism)
  • Cellular hypoxia, mitochondrial defect, methylation defects (shortness of breath, mini-clubbing, “fatigue” or energy currency deficit, heavy metal toxicity, MCS, oxidative stress)
  • Push-crash (short term, days, post mental and physical exertional malaise; longer term, weeks or months, post trigger activation- physical, emotional, infectious- physiological explanation is obscure)
  • Gene activation/repression (Marfan’s, Ehlers-Danlos, other connective tissue disorders? Susceptibiltiy to neurotoxic illnes? Cancer?)

But each piece of this list can be explained in terms of the downstream effects of the virus. The hardest to explain mechanistically is push/crash, but some sort of abnormal response to stress hormones is probably involved, thus likely one more manifestation of diffuse hormone abnormalities. There are many questions of course, why hormone depletion, the exact nature of the receptor abnormalities, what exactly causes the hit to the nervous system, but if you consider it piece by piece, all can be explained by the uncontrolled replication and persistent presence of the virus. The body knows it’s there and is doing exactly what it’s supposed to. If it weren’t for the immune response, mucking up the works, it might almost be a commensal. There is no immune deficiency as there is with AIDS, even with advanced disease. Immune deficiency and long term survival are not compatible.

My medical mind was shaped by surgeons. I prefer to treat with my hands than my prescription pad. Not so useful for dealing with chronic disease, but I keep seeing ways in which that approach is needed for the current situation. In many ways, the simplistic ED mentality is what’s called for. It’s an emergency. People are trapped and suffering, with no help, or worse than no help. Triage, best guess, compassionate care. ABC’s.

We have a way to think about it now. No more need for all those black box protocols. It’s pretty simple all of a sudden. Unfortunately there are very few therapeutic modalities worth considering, but at least we finally know what not to do. We need reliable detection from more than one commercial lab in the world. We need viral load measures so we can figure out what we’re actually doing with antiretroviral therapy. We need specific drugs. But considering what’s available at this moment, the options are limited and therefore not complicated.

There is a slowly growing coalition of doctors with sufficient critical thinking skills to consider what to do now for thousands of XMRV+ patients who have already been tested. Only a very few, but it’s a beginning. Doctors who are willing to try to figure some of it out, even before the scientists get the years of controlling the show that they seem to want. The patients don’t die after all. What’s the hurry? And after the detection issues are worked out, in a year or two, then they have to prove pathogenesis, not just association. Then after a few more years we can start to think about whether the drugs we already have are safe enough to try in clinical trials. The usual path to clinical trials is a case study, then a pilot trial of carefully selected cases, before a large scale clinical trial. We are the case study. Patients are lining up to be included in pilot trials, formally or informally. Where have all the doctors gone?

I was an alternative doctor, of sorts, in my last medical incarnation. Patients from that practice keep coming to mind. Many of the patients currently seen in alternative practice will turn out to be X infected. The alternative medicine community has come very far in identifying the metabolic defects and how to think about treatment without doing harm. Many people have written to me that if I would only consider this or that supplement, it would help us. This is at the heart of the problem with treating CFS. The disease is a relapsing remitting process all on it’s own. Everyone naturally attributes their improvement to whatever they were doing when they got better. I recovered the first time for almost a decade with no pharmaceutical treatment at all. In fact, my health would likely be better than it is, had I never seen a doctor at all.

Not in any way interested in increasing our pill burden, we are starting to add back in a few supplements, in the hope that they will be more useful than they have been in the past. Here is a useful review article about neutriceuticals for HIV:
Nutrients and HIV: N-Acetylcysteine, Alpha-Lipoic Acid, L-Glutamine, and L-Carnitine. Patrick

We’ve tracked our TGF beta-1’s and C4a’s from baseline in an attempt to monitor something useful, though viral load, if it were available, is probably the only meaningful thing to follow. These labs do reflect what has happened experientially, though I think it lags behind the clinical picture. It looks like the drugs flare inflammation, consistent with our experience, though Ali didn’t think they made her particularly worse, sick as she already was. Our C4a’s were both normal initially, went sky high when we started treatment, have been coming down and were normal again when we were drawn the end of Sept. My TGF beta-1 was 25,000+ at baseline and has been coming down the whole time, most recently 6000+. Ali’s was 9000+, went up to 28,000+, has been drifting down and was 7000+ last check. We need a few more data points to know if it is meaningful.

The biggest question in my mind, with respect to the use of antiretrovirals, is whether it is necessary to be blasted right off the bat with a full HIV dose, because of the experience with HIV drug resistance, having nothing to do with CFS or X. We have reason to believe that flaring inflammation is counterproductive and we have clinical and lab evidence that full doses of the drugs flare inflammation. We may be setting off exactly the reaction we are trying to turn off, and that may be why some early results have been less than impressive. If I were starting now, I might try starting low and going up as quickly as possible. Certainly after an unsuccesful attempt at getting going. I took tenofovir at half dose for a week, after being unable to start the first time, then went up to full dose without problems. That said, we don’t want to find out in a few years that people who tried treatment early on wound up with resistant virus. Another possibility, especially for patients who have been sick for a long time, is pretreatment for a more rapid beneficial response.

I wonder as much as anyone, especially sometimes in the middle of the night, if it is Deplin, stopping antibiotics or the power of positive thinking that has made us better rather than antiretrovirals? It doesn’t seem likely, especially since there are two of us, but I do hear occasional reports of spontaneous recovery even after a long time. For now, we have to live with this uncertainty, until we have more clinical and laboratory evidence. I thought there would be a large amount of clinical anecdotal data by now, but the powers that be seem to be getting their way, with a stranglehold on the option, due to physician fear, ignorance, self-interest. I would like to modify something I’ve said in the past. I’ve referred to the use of antiretrovirals as an experiment. From my current vantage point, taking antiretrovirals for a retrovirus doesn’t even constitute the usual and customary off-label prescribing. It is a valid option, until evidence shows it isn’t. It is unbelievable that people write to me every day because their physicians seem unable to write prescriptions when they have been prescribing much more dangerous drugs routinely for many years. Not that prior harm justifies a new round, but I believe a trial of antiretrovirals can be a rational medical choice at this time, on a case by case basis. And my daughter and I have put our bodies and privacy on the line to demonstrate that. At the very least, even the most skeptical will have to accept that we are doing extremely well, outside of the CFS bell curve, despite antiretrovirals (three drug combination) at full HIV doses for nine months.

I have received quite a few letters from people who crashed for the first or subsequent time after a vaccination, including flu shots. In my opinion, at this point anyone with a CFS history or the offspring of anyone with a CFS history, should not be vaccinated. It may be that it is the immune challenge that sets off the disease (as it would seem from listening to case histories of autistic patients). But there is an even more pressing and insidious consideration. I have been reading the animal retrovirus literature to find clues for understanding and dealing with HMRV’s.

The literature is vast. Amazing what they know about chicken retroviruses (ALV’s)! Simple endogenous retroviruses. Can infect cells of other species in tissue culture. Recombination events play a part in pathogenesis. Cause tumors of various sorts. Sounds familiar…

There’s literature about breeding in and out certain endogenous retroviruses in chickens. You can breed in compulsive overeating (like OCD) caused by a particular endogenous retrovirus. And you can selectively breed out the ones you don’t like.

Guess what! They grow live attenuated vaccines in all kinds of animal cells, commonly chick and duck embryos. I’m not a conspiracy theory type. I usually think stupidity explains most of the disasters. But in this case, it is more about arrogance and hubris. They’ve known all along that various endogenous retroviruses were present in the cells they were using, but decided to go ahead and do it anyway. I’m not saying that ALV related viruses are involved in the chronic neuroimmune illnesses the way that the murine retroviruses likely are, but it certainly seems possible. At least worth considering until we know more. It appears that there is more than one MuLV related virus. Could there be other animal retroviruses involved?

A paper that takes arrogance to a new level. Absence of proof is not proof of absence.

Here’s a good one…

And here is a little good news (we’re overdue). AZT inhibits this group of retroviruses also. They knew that before I had Ali. AZT really is a very broad spectrum drug.

And look, they know more about another simple retrovirus that infects fish than they do about what’s wrong with millions of people. This one makes tumors that wax and wane and doesn’t kill quickly.

Did you like this? Share it:

13 thoughts on “Pure speculation

  1. >Off topic (and I apologize for that) but I do not know how to contact you any other way. Like Ali, my young daughter also has XMRV. Because she suffers from gastroparesis and is very fragile, she cannot try any of the potential treatments, especially because they are all oral. I was wondering if you have any suggestions under such circumstances. I understand that you have experience with HBOT, a treatment she has benefited from; and I was hoping you might be able to share your thoughts on that in relation to XMRV. Thanks.

  2. >Great post.

    I like your groups. I nearly fit in all of them. :)

    You mentioned NAC in your post. If you are taking B12, avoid NAC. The others should be ok.

    Why is does NAC have negative effects when taking B12? I don't know, but after noticing it was reversing or blocking the effects of the methylation protocol, a simple search showed that there were many with the same experience. It made me feel terrible, and I took NAC a lot before my methylation protocol.

    Having all this mess starting with moving to Lake Tahoe tick bite in my groin, I do know that treating tick-borne diseases has been a huge help. It took me a while to see the CFS connection, but I used to live in Lake Tahoe. I felt terrible during treatment, whether is was a pharmaceutical or herbal. I monitored my progress via dark field microscopy, and there was direct correlation between the ridding of spirochetes (mostly cysts inside erythrocytes and leukocytes, but some swimming on live analysis) and my well-being. They say you can't see Lyme with just a finger prick, but whatever spirochete it was, it was real. Perhaps I really had some other type of borrelia (such as a relapsing fever variant), but that's insignificant to me.

    I also have biotoxic illness, and I question whether going after the retrovirus will treat the biotoxic component. I'm not sure exactly what started my rapid detox (that in turn caused rapid weight gain!) as I was doing so many things. I can tell you that in the past, I don't believe I was really detoxing anything. I couldn't sweat in a sauna, and my urine was always clear. I won't give all the details, but all this changed one day. This is also exactly when I no longer felt the need of using the methylation supplements. And no, I am not taking cholestyramine or anything like it to bind toxins. I'm letting my body do it on its own.

    Now, I know there are skeptics that will argue if there is a biotoxic aspect of the disease. Perhaps there isn't a biotoxic aspect in everyone, and if I didn't experience what I did, I'd be skeptical of such a thing.

    We are all unique, and I do think this is what i going to make treating this illness very trivial. It would be nice if we all could able pop a pill for a short while, and have all systems go away, but it's hard for me to see this as reality. It is of my guess that there are at least a few people (besides a couple of Dr. Cheney's patients) who have fully recovered from CFS/XMRV, but I'm sure their voices aren't heard. By fully recovered, I don't necessarily mean eliminating the retrovirus. As we know, there are plenty of healthy people that have XMRV.

  3. >Words cannot say how much I appreciate what you are doing in your search for health and for sharing your search with us – those who cannot go where you go because we've been impoverished by this disease and cannot get medical care of any kind.

  4. >FYI Jamie- Deplin, plus Actos, brought my energy level up. You are not imagining that. Thanks for speaking out, and speaking up. T.G.

  5. >Brilliant post Jamie. This is exactly the kind of thinking/analysis that patients are desperate for. We've been waiting for decades for this kind of no-nonsense scientific approach to our illness. Many thanks!

  6. >Another THANK YOU for all you are doing to help so many of us with ME/CFS. I also appreciate all the time you are obviously spending perusing scientific journals and integrating the not-so-light articles found in them for the benefit of all of us. You may not be quite ready to resume a practice at the moment but you are administering great care for so many of us. I have just connected with a ME/CFS concerned and savvy MD in my local area. As a holiday gift, he's going to get the link to your blog. Blessings!

  7. >Do you have any data on the percentage of other ME/CFS/Lyme patients who have improved at all on ARV's, or who have improved as much as you have?

  8. >I think some of the original polio vaccines were grown on Rhesus monkey kidney cell lines that were infected with numerous sarcoma viruses! I'm sure that was determined after the fact. Oops! But that was then and this is now! Great blog Jamie!

  9. >Jamie, I would be really interested to hear which of these categories you and Ali have found to reverse with ART treatment, and in what order. I am particularly concerned about reversing neurodegeneration, since it seems hard to do in other illnesses — but then, AIDS dementia has a remarkable degree of turn-around. However, you just don't hear of AIDS patients (or anyone really) with the extraordinarily weird hypersensitivities that ME/CFS patients have.

    I am also curious why you wouldn't put push-crash into mitochondrial dysfunction. Dr. Myhill (who does mito testing that predicts disability in ME/CFS) has written about push-crash as a function of the mito impairment. I also wonder if delayed crash, and what a friend of mine dubbed "perma-crash," (the trip that an ME/CFS patient doesn't recover from for ten years) are different from the momentary feeling of being zapped from adrenal fatigue.

    Very interesting explanation of how the retrovirus could result in all of these downstream symptoms though. Thanks for another great post.

  10. >Well, I very much enjoyed the second half of this post. I would say it's the bravest post you've made so far! And I think you're right. It makes a lot of sense that vaccines, grown in such medium, would transmit viruses that eventually evolve to happily inhabit us ("Life will find a way"–Jurassic Park).

    OTOH, maybe ticks transmit murine retroviruses, too, since they feed on mice and humans.

    The first part of the post doesn't make sense to me, though, because it is so broad (to me) as to be meaningless. General categories (vasospasm) leading to different symptoms such as migraines or angina–I don't quite understand. If there is vaspospasm why would one person get migraines and another angina? Or inflammation leading to anything from IBD to cognitive deficits. Unfortunately, these categories are so sweeping as to be meaningless to me. And a "one virus fits everything" model doesn't really make sense.

    But anyway. I don't think your improvements are just due to going off abx and going on Deplin etc. It really does seem the ARVs are helping both of you, to whatever extent they can (who knows what the ultimate ceiling of improvement will be). OTOH, you are taking so many other supplements and medications, it is a little hard to parse out what is doing what, but as long as the whole picture is positive, that's a good thing.

  11. >I wish to thank you, Dr. Deckoff-Jones for your
    careful consideration of ME. I do feel compelled to respond to your statement that we are not dying. It is true that we are not dying quickly, for I have been ill for over 35 years and haven't yet died.

    However, the wall of my left ventricle and left atrium have thickened, and have been failing me for the last 20 years and I now have congestive heart failure. Others are dying of kidney failure, cancer and one man my doctor told me about was dying with a large white mass within his brain.

    So, for many of us, relief cannot come soon enough, for aside from enduring our daily suffering with Severe ME, are very desperate for help as soon as possible, not having the desire to die so prematurely.

    While it is true that many do face years of life
    ahead of them, for those with Severe ME, bedridden and facing a premature death soon, we would certainly insist that time is of the essence.

    Our governments, the US government in particular, have failed us, prolonging our lack of care and suffering for nearly another twenty additional years since Dr. Elaine DeFreitas first discovered the retroviral link in 1991, and our government halted subsequent retroviral research after failing to take the care to replicate her methods that she had taken care to develop.

    Yes for us, the lifting of our suffering and the prevention of our premature deaths cannot come soon enough. ;)

    Thank you for your ear.

    Gratefully and respectfully submitted,

    One voice for all

Comments are closed.