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, June 26, 2017

First appointment with a neurologist

I had my first appointment with a neurologist today (Dr. L), due mostly to my ongoing hand and foot pain.  I told her that dating back to at least February, on a nearly daily basis, I have pain in my fingertips.  The good days are days when the pain is only in my fingertips and not severe enough to bother me when I type (like today).  As it gets worse, the pain moves into my palms, and also affects my toes.  When it gets still worse, it moves into the back of my tongue, making it more difficult to speak and swallow solid foods, and also into my eyes (or more likely the nerves behind my eyes), making it uncomfortable to move my eyes or refocus them.

First the doctor asked me a long list of formulaic questions, such as whether I had fallen and hit my head.  These seemed routine and pointless.  Then Dr. L had me perform a number of tests for dexterity and coordination, not unlike a roadside sobriety test (walk on a line, heel-to-toe, heel-to-toe).  I passed all of these test because my issues are more about pain than dexterity (although the latter does seem to come with the former sometimes, or on very bad days.)

Based on my description of symptoms in various parts of my body and on both sides (bilaterally), Dr. L said the issue likely originates in my brain stem or upper spinal chord.  That is the only logical explanation for symptoms that affect both sides of the body and in such diffuse locations. This was not a surprise to me having been a part of the ME/CFS world since 2011 and having read many theories about ME/CFS potentially originating in the brain stem.

Dr. L ordered an MRI to rule out Multiple Sclerosis and a brain tumor. although both are very unlikely.  The MRI will be with contrast, which requires injection of a dye into my bloodstream.  I know some ME/CFS patients have reacted badly to the dye, but I have had a CT scan with contrast since first coming down with ME/CFS and I didn't react.  I hope this time will be the same.

Dr. L stated that if the MRI fails to produce any remarkable results, she will then probably order blood work [total waste of time] and possibly also nerve testing [possibly fruitful.]

I'm aware of Dr. Cheney's work with MRIs of ME/CFS patients which showed they have brain lesions.  My understanding is that the lesions were in a different pattern from those found in MS, but nevertheless distinct from what one would expect to see in healthy controls.  So it will be interesting to see if Dr. L notes any such brain lesions in my MRI.  I should have the results by the 3rd or 4th week of July...

Tuesday, May 30, 2017

Hand and foot pain

The pain in my hands and fingers that I wrote about in my last post continues to trouble me.  I am becoming less and less convinced the pain is due to re-activated Shingles.  For one, the pain has migrated to my left hand too.  From what I understand, Shingles will never cross over to the other side of the body--it always stays on one side.  Also, I never did develop a rash this time, and the problem doesn't seem to be improving with time.

A couple weeks ago, I started feeling the same pain that I have in my fingers in my toes too.  And even when my toes aren't hurting, both of my feet feel twitchy.  It's a difficult sensation to describe because my feet and toes never actually twitch.  They simply feel twitchy.  I don't know if there's a word for that sensation, but it obviously has something to do with the nerves.

At the same time, I have also been feeling that pain and twitchy-ness in my throat.  When it's particularly bad, it also feels like there is a lump in my throat and it feels like it's difficult to swallow.

The one bright spot is that the headaches and brain fog that accompanies this recent cluster of symptoms at the onset has disappeared.  That only lasted the first week or so, which is a huge relief.

Because of this new cluster of symptoms, I recently made an appointment with a neurologist.  (She is booked until late June, so I have to wait a little while.)  I have never before consulted a neurologist before, but I think it's time for some testing.  Other ME patient friends have warned me not to expect much.  I do understand that the neurologist may simply run a couple basic tests and that these basic tests aren't likely to result in useful information.  I understand that's a possible, maybe even likely, outcome but I need to try something.  

Friday, April 7, 2017

I still have active Epstein Bar Virus infection

I went to the doctor yesterday (Dr. M) and received the results of some follow-up blood tests. Epstein Bar Virus (EBV) IgM antibodies were still many, many times higher than the normal range.  The blood for this most recent test was drawn three months after the initial draw (from early January), so I expected the antibodies to have returned to the normal range.  Instead, they had hardly dropped at all. We're going to test again in another couple months with a new lab just in case the lab we used for this last test is prone to false positives.  Dr. M said my EBV IgM titers are the second highest she's ever seen.  She's surprised I'm out walking around.

We doubled my dose of Valacyclovir from 500mg 2x/day to 1gram 2x/day.

In the meanwhile, I continue to have symptoms of reactivated Shingles, except with headaches and brain fog this time.  At first the pain and sensitivity was mostly in my right hand, but now it is on the right side of the torso in the same areas as when I first had Shingles in July, 2016.  There is no visible rash this time (yet).  The pain/sensitivity in the torso is much less severe than last time but the hand pain is much worse. I'm hoping the increased Valacyclovir will help that too.  In theory, it should.

Both EBV and the Shingles virus (VZV) are in the herpes family of viruses.  I've read that people with low Natural Killer Cell (NKC) function, like me, will continue to deal with re-activated herpes family viruses indefinitely unless they find a way to increase NKC function.  There are no known sure-fire ways to increase NKC function -- only theories and un-replicated studies showing marginal effects. Astragalus root is one supplement that is mentioned sometimes.  I'm already taking Astragalus root as the main ingredient in Equilibrant.

I've also read that Transfer Factor can also help with NKC function, so when Dr. M recommended it, I agreed to try that too.  So I'm going to begin taking transfer factor, at least until the EBV and Shingles get under control, and maybe for maintenance after that.

Tuesday, April 4, 2017

Update on crash. Possibly Shingles again.

Starting last Monday, I entered a crash.  The main two symptoms of this crash are hand pain (especially in the finger tips, but also in the palms) and a terrible headache.  As last week entered the weekend, it seemed that the hand pain was waning and the headache was getting worse.  But now I can see that both of these symptoms are coming and going day by day, but not resolving.

The more I think about this crash, the more I think it is another flare of Shingles, which I experienced for the first time starting in July, 2016.  At that time, my doctor did warn me that, in some people, Shingles becomes a recurring problem.

The reason I think this might be another flare-up of Shingles is because the hand sensitivity feels exactly like the hand sensitivity that I experienced with my first bout with Shingles.  That time, the pain was worst in the torso region (right side), but it was also present in the right hand.  Apparently the pain was so bad in the torso and legs that I didn't even mention it in my post about Shingles, but it was certainly there.  Now it is back in the right hand (although a little more concentrated on the fingers this time, and more overall more severe)  It is also present to a much lesser extent in the left hand, which could cut against my theory.

I'm not exactly sure if the headache can be explained by Shingles.  Most information on Shingles does say that headaches are part of the early stage of Shingles, but I would have expected that to resolve by now.  Then again, when you combine Shingles with the already unusual biochemistry of a person with ME/CFS, it wouldn't be surprising to find it behaving in an atypical way.

It is perhaps an oversimplification to call it a "headache."  Most headaches I've experienced can be described as localized in one part of the head.  This one is an overall feeling of inflammation or swelling, like encephalitis.  It affects the whole head except the face.

So far, there have been no rashes like the first time with Shingles, but that could be because most people don't get Shingles a second time.  The immune system may have build up antibodies to prevent a full-blown rash outbreak, but not enough to prevent it from causing other trouble.

Also, both times I had a flare of Shingles (assuming this is in fact Shingles again), it was right after a weekend when I "pushed it" too much -- too much activity for a person with a weak immune system. Over the weekend before the pain started last Monday, I went camping with one of my daughters as part of a local father-daughter camping program.  (I know that many would say I shouldn't be exerting myself like this with ME/CFS, but I want to try to be as much like a "normal" father for my daughters as possible.  I thought I could handle this.)  Although I "took it easy" on the camping trip, the nights were really cold, and I wonder if my body became worn down by the poor sleep and cold conditions.

That's my working theory as of now.  Admittedly, it's mostly based on the similarities in sensations, which isn't a lot to go on.  But one shouldn't discount a patient's intuition about their own body.

If this is another Shingles flare, then I would expect it to resolve in 4-6 weeks.  I really hope it doesn't take that long.  

Thursday, March 30, 2017

Hand and finger pain / numbness in ME/CFS?

I've said this before, but every time I think I have experienced every possible symptom that ME/CFS can throw at me, a new one arises that I would have never expected.

Starting on Monday of this week, I descended into a crash.  Most of the symptoms of this crash have been typical for me.  It is clearly a body-wide inflammation event of some kind.  First, my energy takes a dive -- that's a given.  Then, I experience upper respiratory inflammation.  This comes in the form of three symptoms which, for me, almost always go together: shortness of breath, post-nasal drip, and an itchiness in my nose which sometimes results in sneezing.  (This whole triad seems suspiciously allergic in nature, but allergy tests have never shown anything significant.)  Some crashes stop there for me.  It's not the worst kind of crash if it "only" involves a dip in energy and the upper respiratory symptoms.

But when a crash gets worse, I usually also get dizziness upon standing and peripheral neuropathy (my hands become uncoordinated and slightly numb.)  Usually when the crash hits this stage, I also experience tachycardia and a feeling of pressure in the skull (like brain swelling).  I have that now as well.

But this time, in addition to the numbness in the hands, it has actually progressed to pain in the hands, especially in the finger tips.  It hurts to type this post.  It hurts to do almost anything that I typically do with my hands:  Open a bottle, button a shirt, wash my hands.

Starting about a year ago, I noticed that whenever I washed my hands, the act of rubbing my hands together produced an uncomfortable sensation; almost pain, but not quite.  It was a minor discomfort but one of those things that registers with a "hmm, that's odd," before forgetting about it.

Now, with this current crash, my finger tips have become painful to the touch, and the palms have become extremely sensitive.  Now when I rub the palms together while washing, it actually hurts.  It's much more than discomfort now.

I searched the Internet and found very little about finger pain in ME/CFS.  There were a few other people noting the symptom on various message board threads (e.g. 1, 2), but nothing about what causes it or what can be done to treat it.  This is frustrating.

Please, if anyone knows what can be done about this, or where I can learn more about the cause or management of this symptom, please leave a comment below.  If/when I learn more about it, I'll write an updated post.

Tuesday, March 28, 2017

Dr. C Appointment

I haven't had a Doctor C appointment in over a year, but I always make it a point to draft a full write-up of my appointment because (a) I want to remember what Dr. C said, and (b) I know there is significant interest from a certain subset of other patients about what Dr. C is recommending.

Unfortunately I'm having a bad health day with brain inflammation and peripheral neuropathy, which makes it difficult to type.  For that reason, I'm going to do an abbreviated summary of my 50 minute appointment rather than a full write-up.  I will try to supplement this post with a more complete write-up if/when I can.

As many people who follow Dr. C's work know, Dr. C is a strong proponent of his proprietary immune-modulating supplement called Equilibrant. His recommended regimens often include taking Equilibrant in addition to one or two other immune modulating drugs or supplements.  With each additional drug/supplement he tries, he finds that a certain % of his patients respond to it.  Those patients continue to take that drug/supplement, while Dr. C moves on to find something that will help the others.

The latest is a more highly absorbable form of the antioxidant bioflavinoid called "quercetin"--this time in the form of dihydroquercetin.  Here is the exact brand and dose that he recommends.  In addition to its anti-inflammatory properties, it helps push Th2 dominant immune systems back toward Th1 and tends to calm overactive mast cells.  (This was the first time I had heard Dr. Chia talk about mast cells.)  I decided I'm going to give it a try.

That's all I can write for today.  I will try to write more later.

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.