Guest Blog: Seeing Jamie

What follows was written by Val, the mother of the patient I mentioned in the last blog. I am posting it, at risk of being criticized for self-promoting, because it says some very important things about how to get better. That doesn’t mean you have to come see me. Everything I am doing is public information, simple and safe. I want to thank K from the bottom of my heart for her generosity in sharing her experiences. Here’s Val…

Well, I’m the Mom of the young patient Jamie just treated for the month-long intensive.  I’ve been intending to blog about “treatment with Dr. Jamie” since we flew to Hawaii last September to see her, but now I’m feeling an urgency to share the experiences, and I have my daughter’s permission to talk about all of it.

Before I go into the details, the most important thing I want to say here is that if you have a child or young adult with the MEICC or fibromyalgia or OI/POTs diagnostic symptoms, don’t mess around with your GP or family/primary care doc or even the docs you find who at least “believe” this isn’t psychiatric.  Go see Jamie or find a doc who will work with her, if you can possibly afford it.  Her shit works.  We don’t know if it can stave off the worst of the debilitation that this disease devolves into, but if she’d been able to practice and I’d had sense enough to get my daughter to Hawaii to see her 10 years ago when she first got sick, I strongly believe my daughter would have been saved from years of misery.  And, in the end, we certainly paid more on useless Dr.s, treatments and supplements during that 10 years of fruitless searching than we would ever have paid if we could have just gone to see Jamie in the first place.  That’s my main message.  The rest is details.


My daughter, K, had symptoms from birth.  She had major colic that prevented her from sleeping for more than 2 hours at a time from birth to about age 4.  Constipation was a huge issue, including fissures from age 4 onward.  No celiac, no detectable allergies, no Crone’s diagnosis, just on-going poop misery.  Sleep has always been impossible.  In kindergarten, she was diagnosed as having ADD without the HD.  Tutoring taught her to read during first grade and she’s always tested ‘way above average on scholastic aptitude tests since, accompanied by – lol – Harvard-level grades and excessive success on other achievement measures, blah blah, until she started getting really sick in middle school.  (For those who aren’t ME/CFS-knowledgeable, high achievement used to be a hallmark “symptom” that was seen as contributing to the psychiatric evolution of this “stress-related” disease.)

At age 10, she needed an emergency appendectomy.  The surgeon was drunk and didn’t close the one artery that feeds the area.  Consequently, she needed another emergency surgery about 8 hours later as well as a massive blood transfusion from stranger blood.  Who knows what was in it, right?

She recovered from the surgery, but suddenly developed migraines out of nowhere 1.5 years later, about the time of the onset of puberty.  And I should also mention that we put all our kids through the remainder of the “required” vaccine regimen we’d avoided until then, when she was about 12 years old.

Migraines and dizziness started at age 12.  At 13, the migraines were bad enough that she started missing a lot of school.  By the end of 8th grade US, she’d developed a “status migrainus” that lasted for over a month (with total misery, puking, etc.) and which wasn’t touched by any existing migraine meds, amitriptyline, or any other meds except tramadol injections.  Our PCP finally decided to admit her to the hospital at the end of 8th grade to monitor her while he administered ergotamine, an old-fashioned migraine med with potentially scary side effects, for 3 days and other meds (including morphine), and that finally kicked it.

She was OK over the summer and into the next school year.  But at the end of October, she developed horrible pain in her neck and upper back, as well as more dizziness and continuing migraines, and OI symptoms, too.  Our doc finally diagnosed her with “fibromyalgia.”

She just got worse from there.  It was as if this disease systematically attacked every bodily system in succession.  There may be a consistent order to the progression, but I’m not aware that anyone has studied and documented it.  She learned to avoid the migraines, but the pain became ascendant, which continues to the present.  Her gastro symptoms got much worse and she gained 40 pounds for no reason, then developed intractable nausea and lost 60 pounds for no reason.  All of her hormones went out of whack.  Hypothyroid, no androgens, no DHEA, blah blah.  Total fail on blood pressure regulation, totally frightening unpredictable fainting events.  And then the cognitive symptoms arose and she stopped being able to get online to do college courses, let alone for social reasons.  I’m sure I’m forgetting some symptoms that went haywire, too, but these were the worst. She’d become completely bedbound by age 18, but by about age 22-23, she was also completely unable to even handle computer time.

We saw many, many docs and alternative-type healers.  About age 17, she bailed out on the alternative types and said she wouldn’t try any further treatments that weren’t documented in at least one peer-reviewed paper published in a mainstream journal.  (I kinda don’t blame her.  She had a jello cake for her 16th birthday while she was doing the low-carb diet.)  She liked acupuncture for the pain, but the analgesic effects only lasted a few hours.

So, we succumbed to mainstream medicine and she ended up with 8 daily meds and some 20 others for “as needed” symptoms.  This stabilized her, but at what a miserable level.  She had no brain, no energy, still had massive pain, and still no hope.  Like everyone else, we were watching the HGRV research closely, as well as Jamie’s and Ali’s progress on the ARVs, but weren’t committed to this hypothesis until we saw more evidence.  It’s still the causal hypothesis that makes the most sense to me, and there are MAJOR clinical reasons to go there, but we just weren’t there yet.


What pushed us over the edge to make the investment in going to see Jamie in Hawaii was a stupid cow of a nurse in our pain-management’s doc’s practice here in DC.  We’d moved K’s care from our small town doc in PA to a pain-management specialist in DC a few years ago.  We’d agreed with our PCP up in PA to try long-acting opiates to control the pain about the time K was 17 and we were otherwise trying to see if she could live alone with a nurse’s aide for about 5 years.  But it turned out that she just needed much more care than an aide could provide, so she moved here to DC, where I work during the week, to live with me about 3 years ago.

The doc down here in DC had newer ideas than our PCP up in PA, but all his tricks also stopped working and he wanted K to go up on her opiate doses, which she already knew was a path to nowhere.  We somehow ended up in his office talking to his nurse, instead of him.  She was new to a pain practice, had attended a 1-day seminar on drug abuse, and absolutely flipped out about all the different meds K was prescribed.  All by herself, this nurse decided that their practice couldn’t continue prescribing for K unless she saw a psychiatrist specializing in ADDICTIONS, because, obviously, my daughter is a drug-seeking junkie dope fiend trying to manipulate their practice into what?  Giving her enough drugs to sell on the street?  Which we’ve obviously been doing for the past 10 years, right?  And then, when we met with the doc, he went on and on about how special K’s case is, how we shouldn’t have ever seen his nurse (umm, why didn’t his office staff know this?), how grateful we should be that he’d deal with K’s many and complex needs (like that’s our fault, right?), and he never once apologized for the massive insults to our integrity that his ignorant cow nurse inflicted on both of us.

I was beside myself with panic and fury.  The last thing K needed was to see an addiction PSYCHIATRIST, who knew nothing about ME/CFS/FM except probably the crap that the CDC publishes on their website, would try to make HER responsible for her disease again, chalk it all up to drug addiction, and otherwise visit another set of attacks on her self-esteem with no path forward to getting better.  I emailed Jamie because I already knew her as another Mom of a kid with this disease who I knew had gone through similar insults and stupidity.  And when we talked (bless her, her immediate friend response was “call me”), it was just obvious that she was in a place to take on K, including all the drug-fiend complications, and might have wild new ideas, based in research, that seemed to be working for her and Ali and could maybe work for K.

Fast Forward

As my facebook friends know, K and I flew to Hawaii to see Jamie last September.  It was a HUGE effort for K and she was a mess because of it.  But before Jamie did any kind of treatment, just getting together with her and talking over all the crap we’d been through was healing in itself.  I loved it that I didn’t have to explain anything we’d tried.  Jamie already knew about all of them and just nodded.  K loved it because Jamie treated her just like I do – with the tenderness and care of a Mom – but with the massively more important set of skills of a Dr. , and, amazingly, one who knows how much a random touch can hurt, let alone standing up against a wall for 5 minutes.  As we all know from her blog, Jamie is a firebrand on our behalf, god bless her!  But, in person with a patient, she couldn’t possibly be more gentle, nurturing and sweet, let alone smart.

So, she changed K’s meds all around and is still in hot pursuit of treating K’s hormones.  One of the most effective things she did was prescribe the high-flow oxygen.  Since K started using it, her pain levels have decreased and she’s just stopped fainting.  Once we finally got it together to have the oxygen tanks delivered here in Nov or so (it took a while to deal with my insurance), K has fainted only a couple of times, rather than the 3-4 or more times/week previously.  And her overall pain levels are massively down.

Jamie also encouraged us to believe K’s personal experience that the opiates had simply lost their effectiveness.  We all discussed what K’s Dr. here was saying, which was that she could go up in her dose levels for immediate pain relief, but agreed that it would only work for a while until she built up a tolerance to the new dose level. Jamie said K could go off the opiates and not feel any more pain than currently, but would achieve the secondary gains of not being labeled as a dope fiend and not having to worry about withdrawal if something happened that she couldn’t get her patches or pills for any reason.  So, K started slowly weaning herself off the opiates after that Sept visit and it turned out Jamie was right – the pain was the same, the high-flow oxygen helped it as well as the OI/POTS symptoms, and…on the very positive side, we all rediscovered K’s massive brain.

Jamie also took her off Lexapro and got her started on Deplin last fall for depression.  Last year (winter of 2010), K was a hopeless emotional mess.  Some of you on MECFSforums know how scared I was about how depressed and borderline suicidal she was feeling.  The combination of Jamie, the pain-relieving, anti-fainting and brain-improving effects of the oxygen, and the Deplin have absolutely turned the mood problem around.  Since Sept, as every month went by, K laughed more, talked more, read more current events, and has absolutely recovered her passion for politics.  She was once going to become a lawyer and run for political office…

The Month in Hawaii

The main purpose of spending the past month in Hawaii was to get K off as many of her current meds as possible.  Jamie wanted her to be in the hyperbaric chamber and do neurofeedback, on top of the continuing high-flow oxygen, while she detoxed.  It just really worked.  Getting off that damned pain patch turned out to be nothing – 2 days of mild discomfort.  And K was able to cut her daily oxycodone pain pills down by 2/3rds and completely dumped one of the benzodiazepines she’d been using for sleep.

We all got overconfident because this was going so well and K decided to stop her Lyrica cold-turkey.  Considering it’s supposedly non-habit-forming and others have done well stopping it cold, we expected she’d be fine.  Wrong.  She was miserable and it taught us, as getting off the opiates had, that Rome was neither built nor fell in a day and we had to deal with this one slowly, too.  Once she re-started it, she was again great, so the lesson learned is that K needs to go off it as slowly as she went down on her opiate doses.  And now she’s doing fine with the smaller dose decreases every few weeks instead.

But, get this – while K was dropping meds and doses left and right, and should have been miserable, she was doing unbelievably well.  I think we only cancelled 2 appointments over the entire month because she was feeling too bad to go vs. the 3-4 re-schedules we’ve often had to do for Dr. and dentist and other appointments over the past 10 years.  And, other re-schedules were simply because K wanted a day at the beach instead of sweating it out in the hyperbaric chamber (it gets really hot in there) and we all agreed sun and water would be more healing.  For a bedbound person, it was astounding to see her snorkel and swim with such joy, go out for dinner, watch her chasing scary bugs around the place we were staying, talk and laugh and engage, and overall enjoy life in a way we haven’t seen and she hasn’t experienced in years and years.

We travelled 16 hours to get back to DC last night.  It was awful for all of us.  K isn’t doing cartwheels today, but she’s also not curled up in PENE fetal position.  In fact, she’s voraciously catching up on all the political TV coverage we couldn’t watch in Hawaii.

Going Forward

Hell, we don’t know.  I’m pretty sure that if we only stopped here with oxygen, hyperbaric and Deplin, all these gains would fade over the next 2 years.  Jamie has more tricks up her sleeve to get K’s hormones normalized, work on her blood sugar, and fine-tune this and that.  And those things will surely lead to more progress.

But, what’s the disease-causing mechanism we’re fighting here?  The treatments so far are basic healthcare and tweaks based on Jamie’s clinical intuition (oh, gee, we get dizzy and have pain – maybe our tissues aren’t getting enough oxygen!).  But Jamie and Ali are continuing to improve on ARVs.  Dr. Snyderman’s results are also incredible.  If K continues to improve and stabilizes at a better level than she’s experienced since she first started getting sick, is there any reason to NOT try ARVs?  I don’t think so.  Jamie isn’t talking about this, but I am. Stay tuned.

And, in the meantime, parents, get your sick kids to Hawaii immediately.  Do what Jamie offers now – it could make the difference between graduating from high school or college vs. having to do all that delayed or not at all.  Save your sick kids some misery.  The benefits may not last.  We’ll see.  But, these have been the ONLY treatments over the past 13 years that have had any clear, unequivocal positive results.  Seriously, if you can’t get to Hawaii, get your Dr. to read her blog, join the forum, and consult with her.  If only she’d been in practice when K began getting so sick…

Hey, I feel pretty good!


I just finished my first month long intensive with a young patient: mild HBOT, neurofeedback, discontinuing meds. She was fantastically responsive, which says to me that Ali’s improvement wasn’t a fluke. The illness is movable, but pretty much everything that the medical profession has to offer is counterproductive, not uncommonly trapping patients in a place that can be worse than death. So much unnecessary suffering! How different my life and the course of my illness would have been had I known what I know now, what to do but, more importantly, what not to do. Then there’s ASD, GWI (and GWI like illness that came after the Gulf War, because it’s still happening in the military) and atypical MS. Not even mentioning the Big C. And quite possibly the entire spectrum of autoimmune disease.

My husband, son and a couple of my son’s best friends were also here for the last two weeks, spring break senior year of high school, sort of a pre-graduation present. As a result, I did some throwing myself off the proverbial cliff, because I didn’t want to miss anything I might possibly be able to do. To my own surprise, I didn’t crash. Not even a little. I couldn’t go on the epic hikes they did, but I went on the night manta ray snorkel trip out of Kona (don’t advise it though:) and a six hour fishing trip. Six hours of using my muscles on a rocking boat. When I got home that night, my body was buzzing and I figured I was going to pay for sure. I did a little oxygen hoping to avoid the inevitable PEM. Went to bed. Woke up out of sorts, but not sick or in pain. Amazing. Clear sign of continued improvement. Lots of personal stress too, working out the changes in our lives, since my husband and I are having to come to terms with the realities of working thousands of miles apart. Persistent personal stress is usually my surest path to sicker, but I’m holding up better than well. Going uphill.

Ali too. She is excelling in her first two courses of online college at U Mass. Got a 98 and 100 on two exams last week. Planning to take a full load starting this summer term. She’s even been getting out a little with a new special friend. At home, she is mostly not suffering; her complaints are generally cheap stuff compared to the past. Brain works. Her life has meaning and joy. Major improvement in a couple of years.

I’m right at that place where you say, “Be careful what you wish for.” Coming back from the dead was so much larger than life. And I returned with a feeling that my medical mind is clearer than it’s ever been. Now I have to do the work:). Dealing with the mundane is hugely difficult; my brain is longing to stay in the big picture. I’m currently emerging from a period of endless set-up followed by a trip to computer hell, multiple independent services going down at once, new computer dying when I needed it to treat patients, changing EMR and it wasn’t smooth, on and on. My patients have been very understanding and I know they are rooting for me. I’ve been unable to respond to some public email and I apologize, but I simply haven’t been able to keep up. I’m sorry if you wrote and I didn’t answer.

I’ve been trying to digest the following paper, which seems very important to me: Identification of XMRV Infection-Associated microRNAs in Four Cell Types in Culture. This helps to define the gene regulation piece that is so clear clinically. But other viruses regulate cellular microRNA for their own benefit as well, including EBV and enteroviruses. Post polio syndrome is clinically similar to CFS. Personally, I suspect the oral polio vaccine as the culprit in my own case. I vividly remember the inoculation via sugar cube and how lucky I felt to get it very early, since my father was a pediatrician. I had symptoms in the years after that. An unusually high number of people with the disease are 58 or thereabouts right now, or a parent is. It would be much better for the human race if it was the live attenuated enteroviruses that they gave us intentionally that has made us sick after so many years, a possibility since enteroviruses persist and also regulate gene expression. Adventitious retroviruses contaminating vaccines and other medical products, rescuing ERV’s, some of which have freely infected most of the human race, is a much darker vision. I hope I am wrong. Responses to antiretroviral drugs, however, suggest that I am not; it is amazing that so much time has passed and it still isn’t even on the table for discussion. In the meantime, I learned recently that high risk babies are being given monthly injections of “humanized” monoclonal antibodies to prevent RSV. Antibodies that are 90% human 10% murine.


 Primavera by Ludovico Einaudi


Aloha nui loa

In The Belly Of The Beast

A certain apathy has set in. The hangover after the party. After years of reading scientific papers every day, it’s hard for me to do it now, because what difference will it make anyway? In the past, the comments on this blog reflected growth and movement within the community. Now it is mostly polite, not as contentious, but with a new lassitude; the tracker still seeing lots of the same people, but after all, what’s left to say that requires 300 comments? The news is all bad. Waiting for Lipkin; like waiting for Godot…

The apathy is especially severe for the professionals involved. The scientists who have the wherewithal to actually crack the case are pretty much gone. The doctors who were interested in collaborating for the WPI aren’t. Everybody pretty much went back to what they were doing, almost relieved not to be bothered anymore. XMRV is dead. Phew, don’t have to think about that anymore. Too bad it made so much sense, but the science doesn’t support doing anything about it clinically. Exempli gratia: Role of psychological aspects in both chronic pain and in daily functioning in chronic fatigue syndrome: a prospective longitudinal study. With friends like this, who needs enemies?

In the meantime, I am the doctor of last resort for a small group of ME/CFS patients with longstanding intractable illnesses, who have already been everywhere and done everything. Even so, they are improving with very gentle measures. Pulsed high dose oxygen, Deplin, Vitamin D, basic supplements, a few herbs. Treat the hormone dysfunction to the extent possible. Stop or wean unnecessary medications (most). Treat associated conditions like PCOS, which is extremely common in younger women with the disease. A few dietary recommendations. Primary care management from a provider knowledgable of their disease. Nothing heroic or dangerous. Primum non nocere.

In addition to the basics, I have one moderately ill, very difficult to move patient doing extremely well on Viread and I have one patient trying Ritchie Shoemaker’s VIP (vasoactive intestinal peptide) protocol, under my direction, still early days. I have one intractable pain patient with biopsy proven neuropathy that has improved with oxygen and Trental, an old safe drug that has been used with some success in the ASD world.

In my last practice, I treated Lyme patients with HBOT at very high pressures for long treatments. They often “herxed”. At the time, LLMD’s were my advisors and the “wisdom” was that this was a good sign of eventual response. I was using doses of oxygen designed to kill bugs and I did have a few patients go into remission following this treatment (without antibiotics). I now think the herx is a cytokine storm and a bad thing if it goes on for more than a short time. I also treated some patients who were undiagnosed “mystery illness” patients, despite extensive workups by good doctors, such as trips to the Mayo Clinic. It is now clear to me that those patients had ME.  Knowing what I know now, even with access to a chamber that could go deeper, I wouldn’t go beyond 1.5 ATA. I am now using a soft chamber that goes to 1.3 ATA (4 psi). I’m again combining hyperbaric oxygen with neurofeedback and finding them synergistic, as I did before. I have been meaning to write about neurofeedback for a long time, and will do so soon, or better still, I will try to prevail upon my mentor, Siegfried Othmer, to write a guest blog. Information about neurofeedback, Sue and Siegfried Othmer and their contributions to the clinical world of neurofeedback can be found at EEG Info and The Brian Othmer Foundation.

I have now heard from quite a few people, in addition to my own patients, that have tried normobaric oxygen by concentrator or tank with various delivery systems, but all using >5L/min for a half hour at least a few times a week. Responses vary from nothing to “wow”, maybe 50% clear responders. It seems to help more noticeably with sicker patients and be especially useful for intractable pain, the toughest of the tough to treat.

I have also heard from two people in the UK that are availing themselves of one of the charity chambers and finding it helpful. My understanding is that they will treat anyone with a neurological disease, so neuroimmune illness qualifies. I do not believe that it is necessary to be referred by a doctor, but I am not positive about that. Maybe someone in the UK who has tried it will respond to this question. I have a patient now here for a month, that has responded beautifully to normobaric oxygen at home, 10L/min by non-rebreather mask, and is now being treated in the soft chamber with excellent early results. It will be interesting to see if with more experience she finds it more helpful than the concentrator alone. It has been suggested that pressure is an independent variable to increasing partial pressure of oxygen alone for unknown reasons, possibly related to encouraging mitochondrial biogenesis.

I have heard only one patient report of normobaric oxygen causing worsening. She is not my patient and this happened quite a while in the past when she was also undergoing Lyme treatment, so I wonder if it wasn’t a “herx”. Otherwise I have heard of no complications that didn’t involve the use of pressure, which ups the ante a bit.

Deplin is a big hit for some, impacting mood, energy, stability. It causes dose related insomnia in people who are sensitive to it and has no effect on people who are not. I have one patient who had an idiosyncratic brief depressive reaction to it, but typically it is overactivating if the dose is too high. I have a couple of patients who think it helps in important ways, but who can tolerate only a very tiny dose, requiring powdering a tablet and dividing into multiple doses. Although there are some OTC supplements labeled L-methylfolate, as far as I can tell they are really 5-MTHF and not the same as prescription Deplin. Deplin comes as a generic DuLeek-Dp, which is not much cheaper and one of my patients thought not as effective. I am advising my patients to try folinic acid and 5-MTHF as well, always one at a time, with B12 and B-100 (unless pyridoxine is a problem, as it is for two of my patients).

As I have said many times before, the prohibition against antiretroviral drugs is insane. While the run on rituximab starts, and will soon kill a few people, tenofovir is not available for anybody but AIDS patients, though it now comes as a liquid for children under two years of age with HIV. It is in clinical trials as prophylaxis for healthy people at high risk; for that purpose, it is turning out not to be effective alone, so is being tested in combination. There has been a rationale for trying reverse transcriptase inhibitors for a wide range of problems for a very long time. Sporadic reports suggest efficacy for autoimmune diseases, but are never followed up. It isn’t in any way outlandish to think that replication incompetent ERV’s are involved in human disease and RTI’s might be helpful.

Even though the responses to arv’s have not been dramatic or complete enough for certainty, there are some of us who have chosen to stay on for a longer term, because we believe it is likely why or part of why we are better. The sum total of the negative experience has been a few self-limited early adverse reactions, some inflammatory flares at the beginning of therapy that resolved with stopping the drugs, one prolonged flare even after discontinuation of therapy and one case of pancreatits that was thought to be related to the drugs, though pancreatitis is not a known complication of the drugs in question. Personally besides the impact on my wallet, the only thing I’ve lost from trying arv’s is my once straight hair is now curly.

Meanwhile, after so much spilled milk, we’ve certainly learned a lot about how science happens, or doesn’t, and how little the needs of patients matter in the equation of what gets studied or learned and how that knowledge is applied.

At this late date, the person that has managed to do the most credible work is a 70 year old, sick oncologist in Buffalo. Dr. Snyderman has produced the most remarkable data. Earth shaking data, or it should be. Completely convincing, yet he has not been able to make the scientific world take notice and do the work. He has written to many, many scientists. Some do not even bother to answer.


Today’s song: All My Days by Alexi Murdoch

Personal Report: Two Years On Antiretrovirals

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