This post is an attempt to answer the most common questions I am receiving. I’d like to take this opportunity to thank everyone who has written and shared. There is a thoughtfulness and deep intelligence in your letters. So much wasted talent to be reclaimed if the disease can be ameliorated. The unbelievable suffering I am witnessing through my correspondence keeps my hands in the fire, even as we improve, with an urgency for the work to move along as quickly as humanly possible.
The doctors are being incredibly slow on the uptake. Infectious disease specialists should be stepping up to the plate instead of waiting for it to hit them on the heads. But, they are so beaten down by what they already have to do each day and the system they have to function in, that they can’t yet see the greatest opportunity they’ve ever had to be healers. In the end they will treat it nevertheless. For now, shame on the IDSA for not even noticing. The last news on their website is from 2009.
The drugs are hard to get on for most. AIDS patients do not have the same problem getting started that CFS patients seem to. It appears to be an inflammatory flare and all three drugs can cause it, rather than direct drug toxicity, since the side effects of the drugs are well known. It may have to do with a build-up of viral products in the cell cytoplasm when the virus is first shut down. The presumption is that it could be in any cell in the body, so the widespread change in what has been homeostasis of a sort is likely involved. I am tempted to say, if you have to, try: start low, go slow, but that approach is a complete no-no with HIV because of mutagenesis. We do not have enough information to know whether it matters with X, P, Y or Z if we expose the viruses to the drugs at low dose for a short time or not.
Not everyone who has been taking antiretrovirals for several months has improved. We are the only X+ people on all three drugs that I know of. I have been corresponding with one X- patient on all three drugs that is not better. It is possible that there are pathogenic variants that are not susceptible to the protocol we are taking.
For me, the inflammatory flare caused by the drugs subsided in a couple of weeks and it didn’t send me anywhere I haven’t been before. I’m not at all happy about having to say that the drugs may make you sicker for a while and it may take months before you know if they are helping or not. Sounds a lot like Lyme treatment. But there it is. We desperately need quantitative measures.
The main risk that I see to a trial of the drugs, other than time, money and the possibility of feeling worse for a while, is the exposure of virgin virions to antiretrovirals that may not be as good as what we’ll have in a few years. And it is always possible to die or be damaged from a drug. I pray every day that that won’t happen to anyone choosing the experiment; with proper supervision, the risk of permanent harm is most likely low. Lower than the risk of leaving the disease untreated for some.
Our best hope now is that the entire group of human gamma retroviruses can be treated as a whole, rather than requiring identification and separate testing of drugs for each variant. Maybe it will break down to X and the polytropic variants. It seems likely that a recombination event is involved in pathogenesis. Ruscetti J Virol. 2009
We are taking AZT 300mg twice daily, Viread 300mg once daily and Isentress 400mg twice daily, standard adult HIV doses. We are having monthly blood counts and metabolic panels. The only abnormal labs have been the inconsequential macrocytosis caused by AZT. Neither one of us can tell that we are taking the drugs.
Lots of concern has been expressed about the mitochondrial defect in the disease and AZT. I was short of breath at rest when I started AZT and not at all now, so I guess my mitochondria are tolerating the AZT. I don’t mean to be sarcastic; it’s just that this kind of backwards thinking is holding us back. To me, it is common sense that the problems caused by the virus can only be affected by turning it off, including the cellular hypoxia.
Many are thinking about how to pay for the drugs. With positive testing from a CLIA certified lab and documented improvement, the meds should be covered by insurance. Time will tell how much of a fight that becomes. VIP Dx is currently the only commercial lab testing for human gamma retroviruses. AZT and generic tenofovir are fairly inexpensive in Canada, very roughly $100 and $150 respectively per month. Isentress is expensive everywhere, about $1000/month; Merck has a compassionate use program.
Considering the various ways to go about trying to inhibit NFkB, a simple, safe approach is to supplement with curcumin.
Actos addresses several problems seen commonly in this patient population. My daughter’s antiretroviral trial was preceded by the addition of Actos. I knew that we were mucking up the experiment, but she was having horrible reactive hypoglycemia, even with severe sugar restriction, and needed an intervention at that point. As it turns out, she had no problems getting on the drugs at all, which seems to be an exception, so I am wondering if the Actos assisted with the cytokine flare that seems to occur when starting the drugs. It activates PPARγ, decreasing insulin resistance, inhibiting VEGF, dropping levels of certain cytokines.
Low-flow supplemental oxygen by nasal cannula during the worst moments is helpful for many.
I have no personal experience with Ampligen. My impression from my mail is that some have experienced a partial remission from it that generally doesn’t last. It is an intravenous drug which is a serious obstacle. Same comments for IVIG; also it is a blood product…