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
Love your blog! Always informational. I find it interesting you feel differences between Hawaii and New Mexico. I used to spend about 3-6 months out of the year in the Hawaiian Islands and was always amazed at how much better I would feel there than here in Texas. I also noticed differences when traveling to other places across the United States. It never occurred to me it might be altitude related.
If xmrv is just contamination, why are the blood banks spending lotsa bucks testing/screening for it. Just a week or so ago, there was a Red Cross blood drive at my Mom’s work. Her coworkers told her that their questionnaires asked about CFS and mentioned XMRV. They questioned the tech about it and the lady said she really does not know anything more about XMRV other than it is a new virus they are screening for… So you would think that the screening process is getting some positives for them to continue testing and they don’t think those result from lab test contamination.
Dear Jamie, thanks for all you are doing! Just one request if at all possible. Please try and include some expert patients on your round-table. We have been excluded far too long. The (expert) patients know more about this disease than any doctor or scientist. No where in the world is there a forum for patients to brainstorm with doctors/scientists on this disease. It would be great if you could be the first!
Hi Jamie
Thanks again for your insight. It is a tragic tale of gross proportions and one I cannot shake off either, what is happening to Dr Mikovits. It seems that the patients have been trampled on and deceived, yet again. If Judy leaves us, then who do we have?
Glad you are seeing some improvements. I know what you mean, I keep getting “stuck” and hitting roadblocks – going from doctor to doctor, I just want someone to tell me what is going on in my body. Even my family are starting to think it’s in my head.
Coffin is just clutching at Straws. We need to get some more virologists interested in MLV’s but if they aren’t – who could blame them.
The situation over in the UK is getting worse…an Iphone App has been launched for CBT for children, no I am not joking. The psychs stranglehold over us is becoming evermore prevelant with patients chomping at the bit, desperate to be free and to be well. The line between CFS and mental health grows evermore blurred.
I don’t know how you or anyone that cares is suppossed to just ignore what the Whittemores are doing to Doctor Mikovits and the PAtient community.It would be like ignoring someone abusing your family.
Thank you for sharing your and your daughters treatments with the community. I wish the Whittemores would do the same with there daughters treatments. Alas they won’t. They will go on interviews saying the ttreatment is definately helping but don’t feel they need to share that info with the patients that donated to the WPI. So much for we’re doing this for all the patients some of whom may not even make it through another year.
I totally agree about the CAA. What a sham organization they are. There research is guided by an effort to create a pretermined entity that will keep them in business rather than an objective research program designed to find out what ME or CFS really is. The fact that they did not raise a dime to study HGRV’s says it all. Even before the conatmination cabal got going with there papers. But no matter what Kim McCleary and Suzanne Vernon will have nice salaries and nice lives for themselves so why rush to find the answers and or the appropriat treatments right? They will have us all on Lyrica and bloated up soon enough.
Thank you for speaking up. The Whittemores have a lot of patients feeling afraid to speak up on top of being desperately ill. Stress makes us sicker but they don’t seem to keep that in mind anymore with the threatening of Lawsuits always being held over the communities heads.
If what many have said is true and they have lost important Hippa info from UK patients it is the WPI that should be worried about civil lawsuits from possibly losing patients personal info.
Anyway keep up the good work! I hope you and your daughter get all your health back.
Yes, ME is the penultimate Medical School, even for geniuses.
Since 2000 taking daily (among other things :o) — taking lactoferrin instead of viread , 8 mg vaginal estriol, 1000 mg D3, ribose, mag malate, RX colostrum, 3x strength Pancreatin, Betaine HCL, Ox bile, Chlorella 1 T, homemade Chia seed ‘milk’ (omega 3) ,homemade kefir from water or rice dream , bulk ovacare eggshell membrane, bulk great plains hydrolyzed beef gelatin, nowfoods pea protein powder mixed with Integris E7 and filtered water, Integris Kona Gold minerals, Alive multi, grapeseed extract, cayenne, cranberry, tart cherry , Cetylpure , TMG, Glucosamine HCL, garlicin, boswellia, aloe vera, homemade grog —passionflower, wild lettuce, nettles, turmeric, dandelion rt/lf, ginger, chamomile, lemon balm, fennel, valerian,.skullcap kelp.
Swanson vitamins sends free label for returns within 1 year, a 40 year old company with the best quality and prices.
Bulk organic grains like quinoa, raw buckwheat, quick oats. In coffee mill when sick, just add water and stir. Very tasty.
Elevation +-‘s cancel each other out.
Humidity/clouds amplify all the EMF Microwave Radiation .
Aluminum/barium/arsenic levels spiking in hair, soil,water, air from global ‘weather modification’ jet fleets.
Morbidity from body burdens includes brain-dead.
Dr. Jamie, I would post new forum headlines— no identities will be collected from participants . Spare yourselves what the feds are doing to Whittemores and Mikovits (wish you hadn’t told the world of your daily contact with JM)
Last week Feds ordered Annette to ‘warn you’. Truth is no protection from the Feds.
song > http://www.youtube.com/watch?v=qA-yk4k14V0
Love you, Jamie, and your so welcome. <3
I’m kind of surprised you’re both taking diabetes drugs, not only metaformin, but especially Actos. Did you know of the “side” effects?
Actos can cause heart failure in young people who did not have any signs of heart failure before taking it.
Actos taken over long periods of time damages the structure of the arm and leg bones in a way that causes fractures.
Actos causes macular edema.
Actos appears to raise the risk of bladder cancer.
You risk all this in exchange for an average drop in A1c of .2% (at the 15 and 30mg doses) and .9% drop at the 45 mg dose at which bladder cancer becomes an issue.
Dear Dr. Jamie,
Regarding your comments on the Kearney et. al paper, I note that you echo some of the criticisms listed by R. Roberts (see the comments tab on the original paper in Plos One), in an extensive and apparently well informed critique.
I hope that the paper’s authors will see fit to respond fully to the issues raised.
Forgot, also taking melatonin. And B complex 125mg, and extra B-1/ 500mg, Niacinamide 500mg, B 12.
Lactoferrin is the strongest natural pathogen killer.
Prosymbiotics professional strength colostrum rebuilds damages.
So glad you and Ali are doing a bit better.
I am on GcMAF so very glad to hear your take on it. I’ve been on it six weeks and feel bad (nauseous, sleepy, mucousy) so far.
Jamie no ka oi!
Justin
I’m another (severe) patient who did very badly on gcmaf. I posted my experience on this blog:
http://gcmaf-experience.blogspot.com/
I hope there will be a way to predict and monitor responses in the future. In the meantime especially the severe cases should be aware that gcmaf may actually make them a lot worse.
Nina, I just read your blog. Thanks for sharing. I have a question. Do you know of other patients with low NK cells, yet hyperactive immune systems? How do you know your immune system is in overdrive? Did you have other tests run to measure that?
I have low NK cells, almost as low as can be without being labeled “low.” But I never get colds, flu etc. Thanks for any ideas you care to share.
Hi Paula,
I never get colds either. I just feel worse every time someone close to me gets one.
I am guessing that high pro-inflammatory cytokines (IFN-g, tnf-a and others that I’m forgetting right now) prompted my doc to diagnose a hyperactive IS. I also do badly on most or all kinds of immune stimulants.
Hope this helps!
Nina and Paula, have you ever taken an immune stimulator like IMUNOVIR or CYCLOFERON or IVIG? Might an ME patient with decreased natural killer function but hyperactive immune response be expected to have difficulty with these as well?
I have low NK cells as well. My NK Cell count was below the reference range in all 6 sub-tests. I also never get colds, flu, etc, and any supplement I’ve been told stimulates the immune system (L-glutamine, echinacea, Vitamin C) causes a strong central nervous system reaction, including stinging and burning nerve pain and overall malaise.