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

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

Tuesday, September 12, 2017

My ongoing plan to treat EBV; and possibly give methylation another try

I visited one of my doctors (Dr. M) today and discussed July's lab results showing that I've had an active Epstein Barr Vivus (EBV) infection since at least January.  There has been no sign of the chronic EBV infection getting any better since my last post.  I continue to experience periodic tenderness in the pancreas and spleen area, and intermittent swollen lymph nodes.  And of course a flu-like feeling that comes and goes.

I made a push for inter-venous immunoglobulin (IVIG) to help treat chronic EBV, or, failing that, inter-muscular immunoglobulin injections (IMIG).  Dr. M apparently doesn't know how to obtain insurance coverage for IVIG.  She referred me to an immunologist.  She says this particular immunologist, who is affiliated with our local university, is one of the best in the region.  Naturally, I couldn't get an appointment with him until early December, so it becomes another waiting game.

In the meantime, we're increasing my Valacyclovir dose from 1g twice per day, to 1g three times per day.  The goal of this is to get closer to Dr. Learner's recommended dosage of 1g 4x per day for chronic EBV patients.

Dr. M also said she recently attended a doctors' seminar where methylation was the topic.  The presenter was a doctor who has been experimenting with methylation for lyme and ME patients.  He apparently found that many patients aren't achieving any results because one of their genetic mutations leads to run-away oxidative stress, which must be dealt with before methylation can be addressed.  My eyes started to glaze over at this point because I have spent so much fruitless time and energy on methylation in the past with no significant results.  In fact, at times, I'm pretty sure methylation made me worse. Besides, I thought the whole point of methylation was to increase glutathione production, which in turn cleans up free radicals - oxidative stress.  So now Dr. M is telling me you have to clear up oxidative stress before you can do the thing that clears up oxidative stress?  This seems like a chicken/egg issue, but I probably just don't understand.

I agreed I would email Dr. M. my 23andMe raw data, which she will run through some sort of new program (not Genetic Genie) and this program will produce a "methylgenetic nutrition" report.  Then, Dr. M says we can use that report determine (1) if I even have this runaway oxidative stress problem, and if so, (2) how to treat it.

I'm a little reluctant to get back into methylation again, but if Dr. M can guide me through the process, I'd be more inclined to try than to resume experimentation on my own as before.

Saturday, August 19, 2017

My Ongoing Battle With Chronic Epstein Bar Virus

As I wrote in April, I had (at that time) two recent blood tests showing active (IgM) positive Epstein Bar Virus (EBV) infection.  EBV is the virus responsible for infectious mononucleosis.

After my April post, one of my doctors (Dr. C) expressed some doubt about whether the EBV tests were correct.  Perhaps, he said, the tests were false positives.  He claimed that the lab that conducted the tests (one of the two large corporate labs in the U.S.) was known for false positive EBV tests on occasion.  So I continued to take transfer factor as I mentioned in April, but my heart wasn't fully invested in the treatment because of Dr. C's doubt.  When the bottle of Transfer Factor ran out, I stopped taking it.

In July, my other doctor (Dr. M) ordered a third EBV test in 2017, this time using a different lab (the other large corporate lab.)  The test came back positive again, with very high titers.  For me, this removed any doubt that EBV is a factor in my illness--at least it is now.  I've had, at this point, active EBV infection or at least 8 months, and likely more.  January was the first time we'd tested EBV in several years at least.  It is probably unlikely the EBV reactivated just before the first test in January.

My plan is to resume Transfer Factor and continue with Equilibrant and Valacyclovir.   But honestly, I don't think that will be enough to dig me out of this cycle of reactivated herpes family viruses.  It hasn't so far.

For years I've had my eye on IVIG as a treatment.   The few patients I've known who qualified for insurance coverage of IVIG had remarkable results.  More than once, I've heard these patients say something to the effect of, "you forget how much it's helping until you stop the treatment."  These informal reviews, combined with my belief about immunodeficiency being at the root of my ME, leads me to believe IVIG has a good chance of being effective.  The problem has always been that I don't qualify for insurance coverage of IVIG treatment because, as I've been given to understand, one must be deficient in two of the four subclasses of gamma globulins to qualify.  I am only low in one subclass.

Recently a fellow patient mentioned that there are other ways to qualify for IVIG.  One is with chronic EBV.  I haven't been able to confirm that this is true online.  I plan to discuss IVIG with my doctor at my next visit in mid-September and push hard for an IVIG prescription based on chronic EBV.  I have also been told that there is a related therapy where one can self-administer weekly shots of inter-muscular gamma globulin.  This is supposedly much less expensive (perhaps even affordable without insurance coverage.)  If I cannot qualify for IVIG, I plan to try this treatment.

In the meantime, I have a new symptom: abdominal tenderness.  I visited a nurse practitioner  a few weeks ago and she felt my abdomen.  She said that the area under my rib-cage (left side, front) felt firm and swollen.  She said this is the area of the pancreas and spleen "which can become swollen when someone has Mono."  I hadn't mention the positive EBV tests to her.  I said, "well, actually..."

So the quest to find some truly effective treatment continues.  I know it's unlikely at this point that I'm going to find something which drastically changes my life for the better, but I'm going to keep trying new treatments from time to time... if not for any other reason than to keep hope alive.

Sunday, July 23, 2017

MRI mostly negative, but huge sinus cyst visible

Last month I wrote about my consultation with a neurologist because of ongoing, intermittent pain in my fingertips and big toes, and a feeling of decreased coordination in my tongue.  The neurologist said that her first step would be to order an MRI, with and without contrast, of the brain and brain stem.

I submitted to the MRI about two weeks ago.  I was having a fairly good health day on the day of the exam - slightly above my baseline.  It was two hours of sitting absolutely still in a long tube.  The technician placed noise-canceling headphones over my ears and allowed me to listen to a Pandora music station of my choice.  I mostly rested in a sort of meditative state, listening to music, because what else can you do?

I received the results of the MRI on Friday.  They were negative.  The doctor and I clicked through the images on her computer one by one and discussed each individually.  It was interesting to see my own brain and eyes in such detail -- using my brain and eyes.

There were no signs of a brain tumor or MS, or any other abnormality.  I had read that the MRIs of ME patients sometimes show lesions, not unlike with MS patients, but in a different pattern from the signature MS pattern.  There were no lesions seen in my MRI.  There were also no signs of diminished white matter or any of the other abnormalities seen in ME patients in the Stanford study.  (See also, here.)  Although, for this second criteria, it's probably unlikely that the neurologist would have found or noted "a 7% reduction in white matter," for example, unless she was specifically looking for that or comparing it to controls.

My brain stem was normal.  The neurologist said that I have more spinal fluid surrounding my brain stem and spinal cord than most of her patients, which she said is good.  She was of course looking for issues that were totally unrelated to ME, such as when peoples' disks bulge and press on the spinal cord.

The next step is to submit to nerve testing by another doctor.  I think this is very unlikely to lead to any answers, but I will go thorough with it anyway.  I have heard of some ME patients who had significant findings from nerve testing.

The MRI did find a cyst in my sinuses.  I could see it clearly in one of the MRI images.  It seemed HUGE -- like the size of a small pearl onion.  But both the neurologist and the technician who prepared the report described it as an "incidental finding."  They don't recommending doing anything about it.  Google says most such cysts go away after a few years.  Still I can't help wondering if this is why I started suffering from daily sniffles and post-nasal drip a couple of years ago, when I previous had no sinus problems.

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.