Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Friday, March 17, 2017

Personal Update

My last update was in January, right after I'd learned that I have an active Epstein Bar Virus (EBV) infection (positive IgM antibodies) again.  My doctor put me back on a prescription of Valacylovir to deal with the infection.  It's difficult to say whether I am still experiencing the symptoms of EBV or not because my baseline health isn't so great anyway.  I am scheduled to have another blood test on Wednesday, so I should know if I still have an active EBV infection by early April when the results come back.

The bigger story with me is the my shortness of breath (SOB) symptom has finally abated somewhat.  ("Shortness of breath" can be a little bit of a misnomer with ME patients.  When you say you have SOB to a doctor, sometimes they think you're referring to hyperventilation.  It's nothing like that.  If anything, the breathing feels shallow and slow, and no matter how deep of a breath you take, it doesn't seem to satisfy the feeling of air hunger.)

SOB was always a symptom of mine ever since I came down with ME in 2011.  But something seemed to happen in about September of 2015.  I don't know what caused it, but suddenly SOB became a dominant symptom.  I had it every day and, on some days, the hunger for air became so intense that it would become difficult to concentrate on other things.

It started to return to "normal" again in about October of 2016--and by "normal" I mean, I still have the symptoms intermittently, but they are not as intense as they were during the year from September 2015 to October 2016.  And the post-nasal drip that almost always accompanied the SOB flares isn't really there any more.

As always, it's difficult to determine what caused this improvement because I changed a number of treatments all around the same time.  I went back on Equilibrant and another immune modulating supplemental called ImmunoStim, after being off of both for about a year and a half.  This is my best guess for what caused the SOB to improve again.

Another possibility is that I stopped taking probiotics in late summer, 2016.  Then in the Fall, I found a hypoallergenic brand of probiotics which avoids strains of probiotics that are known to trigger histamines.  I started taking that brand instead.

Another possibility is that my diet for a while had grown to include a very significant proportion of nuts, particularly cashews: Cashew butter, cashew milk, raw cashews, Lรคra bars (which are cashew based.)  Then I read about lectins and how cashews are high in lectins.  I'm not necessarily convinced that lectins are problematic in the human diet, and I've never read about any connections between lectins and SOB, but I decided to eliminate cashews for a while.  I did this also in the Fall of 2016, so it's difficult to determine which of these factors helped improve my SOB.

I also started taking Vitamin D3 (5000-10,000 IU's per day) for a while in the Fall of 2016, but now I'm back off of the Vitamin D3 and the SOB is still improved, so I don't think it was that.  I also went back on Valacyclovir in January, but the SOB had already started to improve by then.

I wish I was one of those people who had the patience to methodically experiment with only one variable at a time, but I  can't seem to do it.  So I may never know with certainty what was contributing to the worsening SOB, but I think most likely it was either the lack of immune modulators, the probiotics, or the cashews.


  1. Hey Patrick. Greyson here.
    For your SOB, or air hunger, are you a mouth breather? How congested are your nasal passages?

    I used to have horrible air hunger (SOB is not quite right, it was that unsatisfying feeling you mention).

    Mine is virtually gone now since I realized I was a mouth breather and switched to breathing through my nose only.

    The air hunger can flare, usually if I'm a little nervous and my nasal passages are a bit inflamed and I can't get enough air through them. This is usually when I'd breathe through my mouth, but that just makes the air hunger much worse, and no matter how big the breath it is unsatisfying.

    When my nose is totally clear, air hunger is totally gone no matter how nerve-wracking the situation. It's great!!

  2. Shortness of breath can mean an iron or copper deficiency.Also,people with M.E are known to have thick blood so oxygen cannot travel through it well at all.An anti-coagulant that is tolerated might help.

  3. Could you please check your conversation inbox on Phoenix Rising? -Valentijn

  4. Hi,

    I have a few comments and thoughts. Dr Rey and group have had good success using LDN and Famvir for EBV. I would suggest trying LDN with your current regimen. Start low and slow.

    You might want to add 5-10 grams of Vitamin C a day, 2000mg of lysine and 2000mg of Olive Leaf as anti-viral cocktail. Also, for cellular support, you can add D-Ribose and Phostidylcholine. You can review my blogs on Health Rising on working with Dr Cheney. At some point, I stopped all those interventions and I got back to 70% again, but one viral infection after another left me bed bound starting over and questioning it all. One more time I climbed out bed and managed to get back to 50% but the doctors are really making it all too difficult and working with Cheney was just too costly. Then 3 weeks ago back my health fell off a cliff again, but strangely this time, I don't feel the sick flu like when EBV was present, just my energy has gone.

    Due to Gastroenteritis acquired last summer and the destruction of energy, I have decided to do a FMT next week. I am not sure how it will work if their are viral issues, but desperate times mean trying things that have worked for others.

    Your shortness of breath can also come from not producing enough energy in the heart, my experience which could also have to do with thick blood.