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

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

Wednesday, September 21, 2016

Beware of Supplements that May Cause Kidney Inflammation or Damages

Since I first developed ME in 2011, one of my on-again-off-again symptoms has been an aching in the area of the kidneys.  Two separate nephrologists (kidney doctors) tested my kidney function and told me it was normal and that I did not have any kidney stones, and yet these aches would persist.  In recent years, the pain has been mostly absent, but would come back 4 or 5 times per year.  

In the past three weeks, the pain has been back again.  It usually comes with strong, persistent thirst. I wondered if there are any supplements that could help reduce this inflammation.  In the process of searching for supplements that would help, I came across this list of 17 drugs and supplements that, according to the American Society of Nephrology, have been associated with kidney inflammation. One of them, to my surprise, was L-Lysine, which I have been taking at a "maintenance dose" ever since my outbreak of the shingles.

It's probably important for anyone who takes supplements to check this list and make sure they are not potentially damaging their kidneys.  

Friday, September 9, 2016

Antivirals May Treat M.E., But For Different Reasons Than We Thought

If you haven't already, check out this article from the Open Medicine Foundation (OMF).  It starts with a general overview of theories of the role of viruses in ME and various approaches to treating the viral component of ME.  But it's conclusion is perhaps the most interesting.  The article concludes that using antiviral treatments for ME may help improve symptoms in patients, but not because antivirals actually decrease viral titers, but because they improve metabolic function.  Again, this seems unproven and possibly speculative at this point, but it does seem to reconcile the puzzling results of some studies on the use of antivirals in ME treatment.

http://www.openmedicinefoundation.org/2016/09/09/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/

Monday, September 5, 2016

Shingles Update, part II - The Conclusion

WebMD, or one of those medical websites (I forget which one exactly) stated singles usually lasts 3-5 weeks.  My shingles pain lasted just about exactly five weeks.  Granted, it's impossible to pinpoint the day it fully resolved because it faded slowly.  But by about the end of the 5th week, I could no longer detect any pain.

It's not surprising that it lasted the full 5 weeks.  On one hand, I did most things right to treat it.  I took a week's worth of Valtrex (starting about 5 days after the symptoms began - not ideal - but still helpful) and at least 1500 mg, and sometimes 3000mg, of L-Lysine for most of the 5 weeks. On the other hand, my immune system is a joke. So five weeks seems about right.

Unfortunately, there is still visible evidence of the shingles rash.  It's not noticeable from a distance, but up close, you can see pinpoint spots that look like age spots, i.e. no pigmentation.

Frankly, if the pinpoint age spots remain, I will still consider myself lucky.  When I read that, for some people, the pain of singles never goes away, and nobody knows why, I became slightly worried that this could happen to me.  With all my neuro-immune deficiencies, it wouldn't be surprising if my case of shingles was more complicated than a typical case.  Alas, I avoided that nightmare.
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My doctor (Dr. M) says she recommends, for people with herpes family virus infections, L-Lysine at 1500 mg per day just for maintenance, and doubling that dosage to (1 gram, 3x per day) when there is an active infection. I am considering continuing with the L-Lysine as at the maintenance dose.  I first have to research long-term safety of L-Lysine.
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If I ever needed further confirmation that my case of ME involves neurological inflammation (I didn't), this bout with singles proved it.  My doctor said that the shingles virus lives and reactivates on nerves attached to the spine--essentially the virus attacks nerves.  Over the last 5 weeks with shingles, whenever I had a general increase in inflammation--a worsening of my ME symptoms--the shingles would get significantly worse too.  The pattern was clear.  This reinforced what I already knew, that "crashes" are, at least in part, increases in neurological inflammation.