Back To Basics

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.

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

Did you like this? Share it:

11 thoughts on “Back To Basics

  1. I didn’t realize we were aiming for remission. I’m not in remission, but I’m better than I was a year ago using the treatments you mentioned.

    • Hi Pat. Yes, partial remission is more accurate. When it’s working, it takes years. Ali and I are more than 3 years out from making better therapeutic choices. It’s a process. Happy holidays. Talk soon.

  2. Thanks for continuing to explore and share. I too have rarely done well with the frenzy of the season and yes, we are / I am out here tonight, alone. But grateful for the few hours out in the sunshine and garden because of the wonderful weather we are having in Tucson. A call to a family member and catching up with others online brings more joy into the holidays . It is not great – but as my Grandmother used to say – it is “good enough”. Looking forward to your support and guidance in 2013.
    Best to you and yours.

  3. I´m excited about Dr. J´s comments re the benefits of oxygen for people with ME and Autism. I have a friend who very probably has Asperger´s (Autism). I´ve always felt her brain goes through a chemical change when she gets to the Yucatan (close to tropical seas.) Her depression lifts, even though there´s no lifestyle change that could explain such a sudden improvement. Similarlay, many ME/Fibro people go into remission when close to tropical seas. The change is often so fast that it can´t be accounted for by lifestlye, diet, exercise, supplements. Does anyone think increased oxygen (or something along that line) could be a factor ? – Holiday regards.

    • I do know that seashores, caves and waterfalls are a source of negative ions, which have a beneficial effect on people. I moved from inland So. California to coastal Humboldt county and went from walking 4 to 6 blocks a day to 1.3 miles a day a year later. I’m now up to 2 mi. a day with hills. In my case the heat was oppressive and the cool northern summers were a godsend. I think most people do better with heat. There are negative ion generators available and salt lamps are supposed to generate negative ions. If nothing else salt lamps offer good mood lighting and you’ll always have a backup supply of salt.

  4. Have a wonderful holiday with family! I have missed a couple of parties but hope to spend a week with our sons and grandchildren. We can get back on the bandwagon after that – the bandwagon of getting well.

  5. hi Jamie

    Your neurofeedback approach may be lowering proinflammatory cytokines in the brain which would in turn reduce neurotoxicity.Yoga certainly seems to lower PIC levels. I agree about the “message” sent out by the FDA to drug manufacturers. Theoretically ampligen should help people with an activated but TH2 dominated immune system but as you rightly say it could at least potentially prove fatal with some one with a Th1 or Th17 dominated system.Subjective selection criteria will always produce cohorts where very few people actually have a neuroimmune disease.Without objective diagnostic criteria the band will play on and on and on

    • Researchers who support subjective criteria are deliberately dragging out the suffering of patients and hindering progress IMHO.

      Here is an interesting paper from 2000.

      “HIV: reactive oxygen species, enveloped viruses and hyperbaric oxygen.

      Baugh MA.
      BaroAntiviral, San Diego, California 92103, USA.

      This paper demonstrates that there are many examples in the literature of contradictory data concerning reactive oxygen intermediates (ROIs), responsible for producing cellular oxidative stress (OS), and their enhancement or diminution of viral replication. Nevertheless, ROIs repeatedly have been shown to be virucidal against enveloped-viruses, like the human immunodeficiency virus (HIV). Hyperbaric oxygen therapy (HBOT) increases the production of ROIs throughout the body, leaving no safe harbor for the virus to hide outside the genome. This technique already has been tried on acquired immune deficiency syndrome (AIDS) patients, with exciting results. Historically, the biggest setback to demonstrating HBO’s antiviral effects has been the investigator’s folly of studying non-enveloped viruses or failing to initiate ROI production. ROIs specifically attack areas of unsaturation occurring in the polyunsaturated fatty acids of cell membranes and viral envelopes. Moreover, it consistently has been shown that a peroxidized viral envelope breaches, and a breached viral envelope causes viral disintegration.”

  6. Thanks Jamie. I really appreciate everything you are doing. Every post reminds me that I am not in this alone.
    If I remember correctly, Hemispherx Bioppharma was going to send test results to its phase 3 patients. They never did. I am one of them. They were using the RNase L molecule as a marker. Studies had shown that normal RNase L molecules with a kilodalton weight of 80 were produced in CFS/ME patients but something was breaking them in half. Patients had a high level of RNase L molecules with a kilodalton weight of 37. Since RNase L is part of the “anti-viral pathway” it seemed likely that CFS/ME was caused by a virus.
    What happened to RNase L as a diagnostic for CFS/ME?

    I just came across this link. I guess RNase L is a marker for MS and RA as well.

    It just seems like this is an area that is a lead of great potential that no one is researching.

  7. Holidays mean loved ones have time to talk on the phone with the homebound !

    Jamie, can you please speak to us about the following :

    Dr. Peterson documented that only 50% of my blood O2 reaches the cells. Where does the rest of that 02 go ?

    And my blood O2 level is always normal range.

  8. Also, does normabaric oxygen therapy reach the cells ? Or is it just for blood oxygen ? OR ???????????????????

    HELP, thanks

Comments are closed.