Friends are writing to me not understanding why I don’t turn my back on Reno and stop thinking about it… I wish I could, but I am getting mail regularly about how poorly patients are being treated currently; please read the guest blog by Christine Douglas on Khaly Castle’s blog CFS Untied. Also I am unable to back away, because Judy Mikovits is my friend and she is in my daily life. She is suffering a great injustice and it is really hard to stand by, watch, and do nothing, especially when that injustice directly impacts all of us. I can count the number of research scientists who give a damn on two hands, and they take out one of them? Sue her for their own failings. She lost before she got to open her mouth. Donors got angry at the actions taken by the leadership at the WPI and stopped sending money and that’s her fault too? Kangaroo court. They might as well just lynch her and get it over with. It is completely and utterly wrong. Dr. Mikovits and I should be deep in the first clinical trial of tenofovir for ME/CFS, not fighting with the Whittemore’s. It is truly a pathetic situation, all completely unnecessary.
While Dr. Mikovits has been financially and professionally ruined, and faces the possibility of jail, Harvey Whittemore is being investigated, with a lot of resources thrown at it, for very circumscribed campaign donation issues, rather than the whole enchilada. He’s allowed to peddle influence, but within circumscribed rules which he allegedly violated, the penalty for which seems to be fines. One would expect the penalties for playing out of bounds wouldn’t be too stiff since it was all set up by politicians for politicians. The very serious problems at the WPI and VIP Dx, that have had direct negative consequences for patients don’t seem to be entering into it, at least not yet.
Ali and I still seem to be beating the odds, with a general very slow uphill trend for both of us. My eldest daughter moved back home with her children almost a year ago and she said recently that she thinks we are both better than when she moved in, and much better than two years ago. I wish I could show it in numbers (other than the TGF beta-1’s and C4a’s already reported here, new ones pending as I write this), but reports will have to do. We are now following NK counts and function, and a cytokine panel, but we don’t have pre-arv baselines. Ali remains on Viread, Isentress, Vitamin D, Deplin, oxygen and treatment for PCOS, Prometrium, Actos, Metformin. She continues with modified Meyer’s cocktail infusions, but we have stopped glutathione as she had an idiosyncratic reaction to the last infusion (not allergic and not dangerous, may have been batch related). She is tired of getting stuck, so we may be reaching the point of diminishing returns. We shall see. She will go longer than she has since we started them while I am in Hawaii for over a month. She started a couple of online college courses and so far, no problems at all. She is anticipating ramping it up to a full program in the summer. MCS is currently her most limiting symptom, but it is much better than when it first started a year or so ago.
The last time I reported, I had been forced to go off Actos because of edema. Initially, coming off, I had an inflammatory flare, but the edema resolved and has not returned. I got back to feeling about as I had while on it after a few weeks. My numbers reflect that it was doing something good and my glucose is again a little high (my insulin is low). Time to watch my diet. I tried Lexiva again, but still couldn’t tolerate it, due to worsening sugar sensitivity and again, inexplicably, CNS symptoms that HIV patients and normals are not reported to have from it. I am a canary. Drugs are almost always bad for me, or more bad than good. My current regimen is Viread 300mg, Cozaar 100mg, Vitamin D3 5000 units, Armour Thyroid 1/4 grain, Aspirin 162mg, Prometrium 200mg, compounded topical hormones (estradiol, estriol, testosterone) and oxygen. I also tried a 5 day wash out of Viread to see if I felt any better without it and did not; rather fancied that I felt better on it. I am doing quite well, though I have my moments, mainly stress related, and there’s been a lot of stress. Sleep remains delicate, and a sentinel symptom. I am back in Hawaii seeing patients now and will be here long enough this time to see if the physical lift I experience here lasts or fades. My home in Santa Fe is at 7000 feet; in Kapaau, I am almost at sea level. I generally feel better when I leave Santa Fe, which always involves going down in altitude.
I am starting to hear some very negative things about GcMAF (in addition to some early positive reports), so I would like to urge those trying it to exercise caution. I would not “push through”. The negative reports sound like worsening inflammation, “cytokine storm”, sometimes after initial improvement. It never made much sense to me; it seems like pushing in the wrong direction. Our macrophages are already over-activated.
The last word from the NCI, Multiple Sources of Contamination in Samples from Patients Reported to Have XMRV Infection by Kearney et al, senior author John Coffin, seemed desperate to me. I don’t understand how the patient samples got contaminated with one thing and the controls with another. How did that happen if the specimens were all handled in exactly the same way? It isn’t addressed in the paper. Seems suspicious to me. And of course, everybody continues to ignore the biggest question, which is this: by their own admission, they can’t seem to keep these viruses from spreading around and infecting human cells in their labs, so why are they sure that these same viruses, or viruses like them, aren’t infecting human beings? Oh yes, most human cells have restriction factors. That is what they are relying on now. Seems like pretty thin ice to me.
And meanwhile, the CAA is simply delighted with their latest idea. An institute without walls! Why bother with walls? Great gig for them to protect their fat salaries, while sleeping with the CDC. It’s all in our genes. Everyone is relieved. They remain our captors. I don’t know how they keep managing to offend me with almost everything that comes out their mouths and press. I hold their incompetence directly responsible for much of my suffering. Crying for new leadership. Most of the patient community with advocacy experience holds them in disdain. What a mess we are in. Who can we trust?
I still think what I thought. Nothing I have seen or heard has seriously challenged it in concept. Our disease is completely consistent with a retrovirus or retroviruses; I think it will turn out to be not just one virus, but several or even many. Vaccines and other biomedical products are the most likely source, though there may have been natural occurrences as well. The intentional mass breeding of sick animals for our own purposes probably had something to do with it. The viruses may exist at the interface between endogenous and exogenous infection, explaining why it is all so difficult to unravel. Defective, non-replicative virus may be at work also. Recombination events happen. There are common symptoms in family groups, but there is variety between groups also. Presence of virus is necessary but not sufficient. Genetics and environmental factors are at play as well. There is a range of pathogenicity and potential for contagion. Some patients don’t know anybody else that is sick. Others have watched their whole families go down, one by one. I have even been in touch with a patient who believes s/he is contagious for an illness of insidious onset that is spread by casual contact. Not my experience at all, but there is no reason why it isn’t possible. What is unbelievable is that it still isn’t a priority to find out what’s going on, even while I read figures like .4% of the population of Europe has ME/CFS, 2.6% of children in one city in South Korea are autistic and 20% of the population in the US has a rheumatic disease. And then there’s cancer. Something is very, very wrong. The ostrich act isn’t going to cut it. We live longer, but with a very heavy burden of morbidity.
Please join us in the new X Rx Forums, getting under way, after lots of technical difficulties. Katieann has been diligently working on it, and it now seems to be running smoothly. Thank you, Katieann! We are requiring that people use real names, or an alias if necessary, but that I “know” who everybody is. We are not trying to reproduce any other existing forums, but to create something a little different, treatment oriented and a bit safer and gentler. So far, everyone is being very polite, maybe a little too polite:). Almost all of the people who have chosen aliases are in the UK, for very good reasons. It is interesting how attached many are to their handles, becoming part of an identity, but for this forum, we are asking folks to use names, their own if at all possible. Except for the first two forums which are public and visible on the web, everything is as private as we can make it, though there are no guarantees of course. We have a no advertising policy and specific medical advice is prohibited. I have set up a private “Round Table” for doctors and scientists. I hope some of the scientists reading will join us. Please register with your first name. If the name is already taken, use the first initial of your last name also. Drop me an email if you feel the need to use an alias.
A hui hou kakou malama pono…
Tonight’s song: Novim’s Nightmare by Cat Stevens