I have always found this to be a trying time of year, even before I got sick. Our family is one of blended traditions and we often wind up celebrating both Chanukah and Christmas, making the whole ordeal go on and on (bah humbug:-). My husband and I thought we had fulfilled our obligations on that front, but now we have little kids at home again. Our eldest daughter Julie, who is half native American, moved back home last year with her two children who are Pomo Indians, and our son is home from his first semester at Tulane. Talk about a mish mosh!
I am having one of those days where even my arms feel heavy. Hey, who turned up the gravity? I feel tremulous, but it doesn’t show. I would like to go to a Christmas party tonight, but I’m not sure at the moment if I’m up for it or not. I’m replaying my whole tape loop about not wanting to disappoint. It doesn’t mean I won’t feel good to go when the time comes, but it’s up in the air at this moment. I’ll use my oxygen, take an epsom salt bath, and probably get the boost I need. More bothersome than the weakness though, with which I’m accustomed to struggling, is the emotional reactivity that comes with more inflammation. I’m sure many of you can relate…
That particular symptom was one of my first. It started just a few months after the birth of my second baby at 40, and it made me feel like I was becoming a different person. For those of you that don’t know me, I had gradual onset of symptoms, no PEM and no diagnosis for a decade, followed by incorrect diagnoses. I haven’t been bothered by this particular symptom for quite a long time and reexperiencing it is sending me back to the exploration of biofeedback that began when I first became ill in 1995 and was looking for a non-pharmaceutical solution for this and other alarming symptoms. In addition to neurofeedback with Cygnet, which I use in practice, I’m enjoying trying out some of the innovations for biofeedback hometrainers and stim devices on the market now. Advancements in electronics have made for easier to use, more effective and less expensive devices. I am particularly interested in them, because most of my patients can’t access a neurfeedback therapist and I had some devices way back when that might be helpful in this context. I’ll report on this subject at some point in the near future.
The FDA committee’s rejection of Ampligen filled me with mixed emotions. As it has been clear for a long time that only a minority of patients do well on it, and as it has some significant downsides, I’m happy for the would be non-responders who will be spared yet another therapeutic failure. On the other hand, other patient groups with real diseases are allowed to try toxic treatments that have only a small chance of success. I am of course concerned about the people who need the drug being able to get it, but the tragedy for all of us is Hemispherx’s failure to figure out who to treat with their drug; thus they have contributed nothing to our understanding of the pathogensis of our disease. They have also sent a loud and clear message to other would be drug developers to avoid CFS like the plague: SHAREHOLDER ALERT: Pomerantz Law Firm Has Filed a Class Action Against Hemispherx Biopharma, Inc., and Certain Officers
The same problem with patient selection is now happening again with the early experimentation with Rituxan: patient selection is random and there are no markers to follow. If you are sick enough, want it and can pay for it, you can be a guinea pig. I predict the stats won’t be good, for the same reason that the Ampligen results weren’t. There may well be a subset of patients that would have a higher hit rate, but nobody knows which ones. For me, it’s even simpler than that. I don’t want anything to do with it, personally or professionally, if it can kill. ME/CFS is a relapsing remitting illness. MS light. The best place to start is with the safest things, try to encourage remission, which requires synergy of global strategies.
One day soon, coming to a Quest or LabCorp near you, we will have a whole genome sequencing test that insurance will pay for. Then we will finally learn something that might change our options. But until then?
Still trying to understand why oxygen works so well clinically, in the setting of patients with increased oxidative stress, I’ve been reading about “mitohormesis”. Please take a look at these papers. This is a very important concept. Oxygen has been used to good advantage in the autism community and I still believe that the diseases are related, the differences in disease expression being due to the developmental stage at onset of illness. These papers describe the mechanism by which repeated doses of increased reactive oxygen species produce cellular resistance to stress. So repeated doses of hyperoxia in patients unable to exercise might produce better mitochondrial function over time, a theoretical framework for a clinically observed phenomenon.
Here are a few to consider:
- How increased oxidative stress promotes longevity and metabolic health: The concept of mitochondrial hormesis (mitohormesis)
- Extending life span by increasing oxidative stress
- Effects of exposure of rats to periodic versus continuous hyperoxia on antioxidant potentials and free radical production in relation to ultrastructural changes in myocardial cells
Since I returned to practice, I’ve been intending to turn my attention to supplement recommendations for my patients. To date, I haven’t had a protocol and my advice has been random and half-baked. The passing of Rich Van Konynenberg left a great hole in our community. I feel a great personal sense of loss, because he and I intended to share with each other and it didn’t happen, completely due to my limitations, all my small supply of energy going to my practice. Now that I am studying the subject in depth and coming across his lectures and posts on the internet, I am very upset with myself. He was a brilliant, giving man. Generous of spirit. I am learning a great deal from him now, since he shared his ideas so freely.
As my second year back in the world comes to a close, my most powerful interventions remain high dose pulsed normobaric oxygen, Deplin, B-12, organic SCD diet, hormone balancing, stopping meds if possible, eliminating environmental toxins and biofeedback. I don’t think such a program will cure anyone, but I believe it can help a lot and is almost risk free. Three and a half years ago, when Ali and I discontinued Lyme treatment, I made deals with the universe that, if Ali got better, I’d be satisfied. Acceptance is my mantra. This recent dip of mine is challenging me to use that mantra, rather than dwell on my losses which only increases suffering.
Ali is spending Christmas eve with her wonderful beau, visiting with his family in Albuquerque, experiencing their traditions, planning to bring him back here in the morning for presents and brunch. She has finished 25 of 120 credits towards her degree at U Mass Lowell with a 4.0 average. I am so grateful that she is able to lead a full life – with disability, it is true, but a happy life nevertheless. Finishing this up, I realize I don’t have it in me to go to a party tonight, then walk in the cold for Santa Fe’s Christmas walk with the kids. I don’t want to hold them up or have them worrying about me. I prefer to save my energy for tomorrow. I’m a little sad that I’m not going, but my husband doesn’t seem disappointed, so it’s all good. It is a glass half empty vs half full moment, sitting by the fire, thinking about friends that are also alone tonight, envisioning a wonderful new year for all of us, filled with peace, love and greater wellerness. Merry Christmas.
Tonight’s song: It Came Upon A Midnight Clear