The experiment in progress

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Coming up on eleven months after publication of the Science paper, sadly my email (which includes treating physicians) is still my only source of clinical information besides what’s happening in my own household. It would appear that fewer than twenty people have tried antiretrovirals for X infection. Of those, about a third are at least some better (on one to three drugs), about a third are not better (on one or two drugs) and about a third didn’t tolerate the drugs long enough to learn anything. As far as I know, no one has been harmed.

When I decided to write publicly about my experiences, I already knew that the drugs were having an impact on my illness. But I also knew that it didn’t mean that in the long run this would be the way CFS or any other X related illness would be treated. I believed that reporting the experience had value whatever the outcome.

It is unfortunate that the way this is playing out, the people least likely to respond fully are the ones most likely to be trying antiretrovirals. It is turning into a quiet revolution of mostly old, sick ladies. For a patient population too sick and too individually isolated to ACT UP (link), maybe insisting on treatment now is a form of civil disobedience. But if age and duration of illness are negative prognosticators for a full response to treatment, which is likely, disappointment in the responses of a few sick grandmothers could be misleading to many who have recently become clinically ill and therefore might benefit more quickly or fully.
That said, we are about the same as the last time I reported. It would seem that at four and a half months of treatment, our gains are continuing, or at least holding, but the rate of change is slow. At this moment, it looks like improvement will have to be judged in months or years, not weeks. For me, the almost complete absence of malaise makes taking the drugs worth it (“malaise” for me is the feeling of a viral prodrome). It has been one of my most unrelenting and difficult to live with symptoms. Manifestations of vascular spasm are improved for both of us. The energy deficit is better, but persists. Push/crash unfortunately persists, though the crashes are less severe and of shorter duration.

But AIDS patients get better in weeks, so what’s happening? HIV+ patients are treated early in their illnesses, when their CD4 count goes too low or their viral load reaches a certain point. If they present after they have progressed to AIDS, they are treated pretty quickly or they die. The X+ patients trying antiretrovirals have had smoldering infections for many years. It seems to me that the inflammation and autoimmunity that becomes established as the illness progresses is the body doing what it is supposed to. It knows the virus is there and responds accordingly. The confusion with invader and self isn’t going to just go away, when the virus is integrated into the DNA of existing cells, even if we stop it from replicating. Also neurodegeneration that has already happened would be expected to improve slowly, if at all. 

It did seem that tenofovir had a positive effect for both of us. There is of course no way for me to know if it was the tenofovir by itself or tenofovir as a third drug. I started it once and went off due to a flare of symptoms, then back on at half dose for a week, before going up to full dose without problems. It may be that with this patient population, it will be necessary to finesse the drugs. Start low and increase as tolerated.

I would like to take this opportunity to state that my daughter is twenty years old and makes her own medical decisions. I would also like to repeat that I am not prescribing for myself or my daughter. We have an excellent family practitioner who cares for us. We are very fortunate. From my mail, it would seem that most are not so lucky.
Many people are writing to me who are trying to make decisions about how to proceed in the treatment maze. My advice is to tread lightly if you can and carefully consider a retroviral etiology. The people who are better have generally gotten there by the rational treatment of an opportunistic infection, e.g. Borrelia burgdorferi or one of the herpesviruses. If you are in a successful holding pattern, I’d not rock the boat until we know more. There is a significant subset of patients who have done well with trigger avoidance, including avoidance of what doctors have to offer. Less is often more.

There is a narrow-mindedness in the scientific community, insisting on an orderly progression through a stepwise scientific process with which everybody should be patient while it unfolds in some proper way. To that I say, we’ve been incredibly patient, some for as long as twenty-five years already, while the epidemiologists have ignored the obvious epidemic in our midst. If this many chickens had been getting sick due to a new retrovirus, they would have figured it out. In the future, I’ll write about some of the work that has been done in the world of animal retroviruses in the last few decades. The level of metabolic detail as to transmission, restriction factors and pathogenesis that has already been elucidated there is both hopeful and dismaying at the same time. While the humans with a new retroviral infection languished and transmitted it to others, animals have gotten quite a bit of attention. Of course they euthanize cats. At any rate, many clues for us there.

These are not new drugs. We have twenty-three years of experience with them in HIV.  We know the side effects pretty well by now (several million patients have taken them).  We are simply using them in an attempt to treat a newly discovered retrovirus.  We do that in medicine every single day – try an existing drug for a condition for which the drug was not originally intended.  It still seems common sense to me to do what we can to shut off the virus, until we know more, which looks like it will be quite a while. We have a right to try treatment in the meantime. Happens everyday in the real world practice of medicine. The reasons for resistance now, have more to do with politics, money, self-interest and inertia, than what is in the best interest of patients. As usual.

If it is possible to treat it even partially now, think how much suffering could be averted. Already another year is gone. The lost potential in my inbox alone is staggering. Reclaiming that potential should be a national priority. We don’t even know the magnitude of the problem. We have the technology. But even if all resources were brought immediately to bear, it would likely still be a bitch to treat. As things are, it appears progress will depend on people being afraid of catching something. Worked for HIV. And then, when the testing is together, the drug companies will smell the money. With any luck. We are so overdue.

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10 thoughts on “The experiment in progress”

  2. >Thank you so very much for keeping us all in the loop! And how sad (yet not so surprising) is it that chickens get more support than us?

    When the humans with 'prostates' in the current bio-political .gov arena figure out that they (and their prostates)are in danger and have been for 20+ years; and that by ignoring CFS for so long they have endangered themselves and their wives, and their children, well then, I expect we will see momentum build. It kinda makes me wonder if officials at the CDC already have antiviral prescriptions filled for their family members.

    My prayers are with you and yours daily.

    ♥

  3. >I'm sorry there has not been a great change in both your daughter's and your health status. It may well be that you have to take these meds for much longer periods of time.
    We all applaud your taking on your own illness, doing the research, finding another physician to watch over you (and prescribe) given that there is NOTHING out there for us at all.

    Thanks for keeping us all updated. Greatly appreciated by the CFIDS/ME sick.

  4. >Jamie,
    One thing you have mentioned several times is your "manifestations of vascular spasm." Could you elaborate on what this means and what the symptoms are?

    Thanks!

  5. >jamie:

    Keep on blogging!! you are "speaking the truth to power", and you have the expertise to rattle some cages in the retrovirial research & general clinician community.

    I'd like to note that, that when you say, " It is turning into a quiet revolution of mostly old, sick ladies." Most likely this is because the sick old ladies have the money/cash flow to try retroviral's. I suspect there are hundreds of us out there if not thousands that would try retroviral's in a flash, if they were affordable to us. Just think — how many years do you think it's gonna be before Medicare OKs the use of retroviral's for CFIDS/ME, or fibromyalgia, not to speak of some of the other potential XMRV syndromes ….

    Considering the lack of general progress on XMRV related clinical actions/information/etc. I think some civil disobedience is necessary.

  6. >I'm having some luck with fulvic acid. I'm using the pure version that is available from http://www.bioag.com. It's supposed to be the most bioactive and is formulated by a scientist with 40 years experience.

    Initially I did a 5 day detox (taking 4 oz./day) and then slowed down to 1 oz/day so I could move to another city. I had amazingly good energy for the move and made a total of 4 trips in 5 days. It also helped me to think more clearly, and lifted my depression. But during detox, all of those symptoms were amplified.

    Two weeks in, after resting up from my move, I felt better than I ever have maybe in my life. I felt half my age and totally revitalized. Chinese medicine may have also helped as I got acupuncture and herbs after I finished moving.

    Once I ran out of the Chinese herbs and fulvic acid, I got started getting tired again. So I got a gallon from BioAg and am now trying it at 2 oz/day (with plenty of purified water). I also got more acupuncture and more of the same herbs.

    If anyone is interested in knowing more, email me at 3d@lightweaver.com and I'll let you know my progress. Fulvic acid is a very exciting discovery for me; chiefly for it's strong anti-viral properties but also because it's such a powerful anti-oxidant and electrolyte that it mops up toxins and free radicals like nobody's business. It's also great for inflammation of all kinds, including arthritis and burns.

  7. >thought I'd just mention that the reason I decided to take fulvic acid is because I saw that it worked for patients with HIV/AIDS. One person posted his/her blood tests and after 3 months the HIV was undetectable. CD4+ levels returned to normal after a year. There IS science on this, it is already proven that fulvic acid kills HIV, herpes, hepatitis and hemorrhagic fevers. Just do a search on PubMed.

  8. >Thanks so much for writing. I look forward to reading your thoughts and hearing your experiences.

    Elisabeth

  9. >i am having good success with valtrex and spironolactone and an aryuvedic herb Holy Basil.i have had cfs for 17 years and feel 75% better with this regimen. thanks so much everyone for sharing your experiences ,
    marsha

  10. >do this:
    when diagnosed with hiv-
    take mebendazole for a week to clean out major parasites. then take a viral load test, cd4/8 etc. then start on fulvic acid (bettamed fluid) continue for 6months. at the end of the third month and sixth month do viral load tests and cd4/8 tests ,liver function tests and a full blood count. now understand one thing virus lay dormant in your lymphatic system and mutate with living dna cells. trying to totally eradicate a virus calls for world war 3. you need to vigorously take also capsules that contain sutherlandia; high doses of vitb complex; and gingseng. at least 6months of the year do continue with fulvic acid. even though you feel healthy etc you must doi viral load tests and liver function tests. my email: misri2005@yahoo.com

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