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

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

Monday, November 28, 2016

Latest Doctor Appointment

Last week I visited one of my doctors, Dr. M., who specializes primarily in Lyme disease but also treats other hard-to-treat conditions such as ME.  Our focus for this appointment was treating my hypothyroid symptoms.  We started by reviewing my recent laboratory blood test results testing thyroid hormone levels.  My levels of T3 (the active thyroid hormone) were optimal, while my levels of T4 and TSH (essentially, precursors to T3) were low, out of range.  Dr. M seemed concerned about this and wants to try to bringing my T4 levels within range as well.

I asked why it was necessary to bring T4 into range when T3 (the actual, active thyroid hormone) is optional.  My understanding is that, under normal circumstances, when one is not taking thyroid medication, the body produces TSH, which stimulates the production of T4, which in turn stimulates the production of T3.  (This is a bit oversimplified, as discussed below.)  So I wondered if T3 is optimal through medication, why do we need to bother with the precursors.  Why not "cut out the middle man"?

Dr. M asked me if I was still experiencing hypothyroid symptoms.  I admitted that I did still experience at least one symptom: extremely cold hands and feet.  Not just a little bit cold, but almost shockingly, painfully cold sometimes.  I had never considered this before.  Why, if my T3 levels are optimal, do I still have such cold hands and feet.

Dr. M explained that patients will still experience hypothyroid symptoms unless T4 is also brought into a normal range.  She referred me to a book called: Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian.  How's that for a specific title?  I'm not sure if I'm going to read the book, but regardless we are lowering my T3 dose and increasing my T4 to see if we can find a better balance that reduces symptoms.

                                                                 _________________

Based on recent emergence and prevalence of histamine-related symptoms, we're beginning to suspect that mast cell activation may be present.  Dr. M states there is a test for mast cell activation, and we agreed that I should submit to this test relatively soon.  I plan to undergo a mast cell activation test in the next 3 or 4 months.  If the test is positive, it will be a significant clue to determining which subset of ME patients I fall into.

                                                               __________________

Finally, Dr. M suggested I consider an emerging treatment for chronic infections called Low Dose immunotherapy, as pioneered by a Dr. Ty Vincent.  This is apparently a somewhat novel approach and I'm not inclined to play the role of Guinea pig at this time.  I will probably not try this treatment.

Sunday, October 30, 2016

Personal Update

I had a birthday this past month.  The big Four-Oh.  Nobody is ever happy about turning 40 and I am no exception.  Officially now, half of my thirties were lived with ME.  But I think about ME less than I did in my first three years of diagnosis.  It is simply part of life now.  

Starting around the beginning of 2016, I believe, I began to ween myself off of the supplement Equilibrant.  (Equilibrant is an immune-modulating supplement that I have written about on this blog--recommended by one of my ME doctors.)  For about 4+ years, I had taken Equilibrant at the full dosage of 6 tablets per day.  During that time, I saw my condition stabilize and I experienced fewer and shorter "crashes."

Equilibrant is expensive and I wasn't sure if continuing to take it was necessary to maintain my level of functionality.  So by about mid-Summer, I had reduced intake all the way down to nothing.  I was completely off of Equilibrant.  And for the first month or two, I didn't notice any change in my health.  

But then my monthly health rating averages fell significantly.  I also developed shingles during that time--possibly related to stopping taking Equilibrant.  Over the same period of time, I also stopped taking daily vitamin B complex tablets.  My energy waned.  

In late September I decided to resume Equilibrant and B complex.  October has been by far my best health month of 2016.  I feel fairly certain that those supplements are helping and that I should continue to take them indefinitely, with occasional breaks or "holidays."  

I also found that my sleep was worse during the time when I was not taking vitamin B complex.  It occurred to me then that many patients say vitamin B12, which is part of the B complex, helps with sleep.  My sleep did improve after resuming B complex.  

So here I am again, stuck in a "holding pattern," very thankful that my case of ME has remained moderate compared to many patients, but also not as hopeful as I once was that I might recover without a breakthrough in ME treatment options.  

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.
                                                                   _______________

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.
                                                                   ________________

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.

Monday, August 8, 2016

Shingles update

I've now had shingles for 16 days (if you count from the first day the pain started, even though there was no visible rash until 3 days later.)  After the visible rash appeared, prompting me to see my doctor for a diagnosis, and to begin taking Valacylovir (500mg 3x/day for 7 days) and L-Lysine, the rash continued to worsen for another 3 or 4 days.  The rash grew from initial spotty patches on the right side of my abdomen until it eventually formed a more-or-less complete band stretching from my navel around the right side of my torso, to my spine.

I would have never thought it possible that the mere touch of clothing to the skin could be painful, but that's exactly what happened.  Even the gentle touch of cotton shirts has become fairly painful. On the other hand, the pain isn't so excruciating that I can't focus on other things if needed.  Most of the time, I can ignore the pain and focus on other tasks.  But when my mind is unoccupied, and especially when I'm walking around (thus creating more friction between my shirt and my abdomen) the pain becomes fairly intense.

As of today, the rash is slowly disappearing but the pain continues to wax an wane.  It is the "waxing" part that concerns me slightly.  The pain had been trending less severe along with the fading rash until yesterday, when it started to become more painful again.  Today again, the pain is as intense as it ever was.  So I will continue to evaluate my options and perhaps seek more Valacylovir from my doctor.

Why did this happen?  Other than the obvious--that I have a weakened immune system due to MEthis happened because I "pushed" myself too hard.

I felt the first symptoms on a Sunday.  The prior Thursday, I'd experienced a very poor night of sleep. I was already in the midst of period of increased stress in my life.  [Trigger warning for severe ME patients]  Then I did a stupid thing: I went to a concert on Friday night, as if I was a normal, healthy person.  I even drank a beer.  Then, after the concert, I had another poor night of sleep because of the stimulation of the concert, its late ending, and the alcohol.  Then, the next day, apparently having completely lost my mind, I attempted to go to a museum with some friends.  This was far more than my ME-depleted system could handle. By Sunday I knew I had overdone it and there would be a severe price to pay.  I felt like hell.

I was correct that there was going to be a price to pay, but I couldn't have predicted that it would take the form of shingles.  But sure enough, that Sunday is when I felt the first strange symptoms as I noticed that my clothing hurt.

Lesson learned...

For anyone interested in further reading, here are two articles regarding possible connections between ME and the VZV virus (the shingles / chicken pox virus.)

http://phoenixrising.me/archives/5806

http://sacfs.asn.au/news/2014/06/06_03_link_between_shingles_and_cfs.htm

Final note:  Is it me, or is shingles a particularly nasty word?  It evokes all sorts of disgusting images in my head.  It's as if roofing tiles are going to grow out of my skin.  (*shudders*)  Ew.  

Thursday, July 28, 2016

I have.... shingles

Over the past two days I've been writing about sensitive patches on my skin.  Up until last night, there was no visible rash.  Then last night a rash developed in two of the three areas where I suddenly have sensitive skin: my abdomen (right side) and lower back (right side.)  My right thigh remains free of visible marks, but still remains very sensitive to touch. In the meantime, another sensitive patch has developed under my right arm (triceps area), and another painful area (which feels more like a bruise, i.e. not on the surface) has developed under my right arm (lymph node?)

I was able to secure a last-minute doctor appointment this morning with my general practitioner, Dr. L.  She took one quick look at my rashes and said "Yep, it's shingles."  Shingles is when the chicken-pox virus (a/k/a varicella zoster virus [VZV], a/k/a human herpes virus 3 [HHV-3]) reactivates and infects the nervesusually on one side of the body.  Apparently the painful rashes last for about 14 days. 

Dr. L said that after a person gets shingles once, it may become a recurring problem.  But if I recognize the symptoms sooner next time, and if I return to her immediately, she can prescribe drugs that will significantly shorten the duration of a shingles outbreak.  She prescribed Valacyclovir, 500 mg, 3x/day for 10 days.

I formerly took Valacyclovir for about 2 or 3 years to control re-activation of HHV-6 and other herpes family viruses due to a weak immune system, which can sometimes allow these old, dormant viruses to "re-activate" in ME patientsor so it is believed by some ME specialists.  This shingles outbreak is making me think I should possibly resume taking Valacyclovir on a long-term basis.

As a final comment, it was really nice to walk into a doctor's office and receive an immediate, concrete diagnosis, and a specific treatment plan.  I'd almost forgotten what that's like.