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