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

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

Thursday, December 21, 2017

My EBV dilemma

I will return to discussing SIBO in my next post because there have been more developments for me in the last two days.  But in the meantime, I have no idea what to do about treating Epstein Bar Virus, if at all.  I rarely post questions to the ME message boards because I try to be respectful of the fact that everyone there is sick--often much worse than me--and has limited energy resources.  In this case, however, I was dying for more opinions so I posted the question below on Phoenix Rising.  I'm re-posting it here too:

I'm at a complete loss whether to treat chronic EBV, and I have two doctors recommending different things. I don't know which one to believe, so I'm hoping PR will have some opinions.  If you make it through this long explanation, thank you!

Background:  Since getting ME in 2011, I've always had positive IgG tests for EBV, with titers that are perhaps considered equivocal for possible reactivation.  I've been on an off antivirals such as Famvir, Acyclovir and Valacyclovir since 2011 and never noticed much of a difference in how I felt.  The drugs never made a difference in the antibody levels either.

Over the past 12 months, however, I have also had 5 tests that were positive IgM for EBV.  This got my attention more than the IgG because it's more suggestive of an active re-infection as opposed to relying on interpretation of IgG results.  Now I have two doctors giving me opposite interpretations and both seem logical.  I don't know who to believe and whether to focus on treating EBV.

Doctor 1:  She is an integrative medicine doctor who doesn't necessarily focus on ME, but treats many patients with Lyme, mold sensitives, MCS, etc.  While she has been useful for treating hypothyroid and a few other treatments, her judgment and medical knowledge can seem questionable. A couple of times she has suggested treatments that have no basis in science and seem to be almost quackery.  

She is the one who's been ordering the repeated EBV IgM tests and she, at my suggestion, put me on the doctor Lerner antiviral protocol a couple/few months ago.  This protocol involves high doses of Valacylovir: 1 gram, 3x/day.

Doctor 2:  Doctor 2 is known as one of the better infectious disease specialists in my area, but she is very much from the traditional school of medicine.  Although she is a former partner of the famous Dr. Chia, she doesn't know the first thing about ME.  She took one look at the repeated IgM+ results and said they are false positive. (This was consistent with my original understanding of how IgM antibodies work--that they are only present during the first 3-14 days of an infection.)  She said she didn't need further convincing, but if it would help convince me, she would order a PCR test for EBV.  I accepted. The PCR test was negative.

At first I thought the negative PCR test settled the issue once and for all: I don't have active EBV.  But then Doctor 1 said those results don't mean anything -- or rather that they just mean the virus isn't in that one sample of blood, but the virus could be in other parts of the body. 

Dr. Chia, by the way, also thinks the IgM test results are false positive.  It's two doctors with good reputations against one who is, in my opinion, questionable.  But then again, why me (why us)?  I would bet a normal healthy person wouldn't keep triggering positive IgM results.  

I can't decide who's right.  Any thoughts would be appreciated. 

[Edit:  There are some very insightful responses in the Phoenix Rising thread.]

Thursday, December 14, 2017

My SIBO test was positive

A few weeks ago when I had my last appointment with Dr. M, we were discussing my G.I. distress and she mentioned that I could submit to a SIBO test.  ("SIBO" is small intestinal bacterial overgrowth.)  I had considered that my G.I. distress might be caused by SIBO, but when I reviewed  the list of symptoms of SIBO, I had only 2 or 3 of the 13 symptoms.  I have bloating, fatigue, and occasional nausea, but none of the other symptoms.  So I considered SIBO a possibility, but not a strong one.

I told Dr. M I wanted to take time to think about whether to spend money on the SIBO test.  Then when my next flare of G.I. symptoms occurred, it seemed much more urgent that I find answers. I called Dr. M's office and asked them to mail the test kit.

Taking the SIBO test involves using a device to capture one's breath every 20 minutes for about 2 hours.  The subject must fast overnight before the test, and there are dietary restrictions the day before the test.

Dr. M's office called me this morning and advised that the results were positive.  I am, however, wondering if this could be a false positive.  Insurance doesn't normally cover SIBO breath tests, indicating it may been seen as somewhat new or unproven.  The large corporate labs such as Quest and LabCorp don't offer SIBO tests (to my knowledge) which also suggests the test may be questionable. Then again, one could fill a Wiki with everything mainstream medicine doesn't know or has gotten wrong in recent years.

Before the test, the subject has to drink a solution of either lactulose or glucose.  Lactulose can lead to false positive results in some cases, and glucose can lead to false negative results.  I took the lactulose solution because the lab's paperwork described it as the default test.

I have an appointment scheduled for Monday to discuss these results with Dr. M.  She'll no doubt want to put me on antibiotics, which is the standard treatment for SIBO.  I'll have to decide then if I trust these test results enough to take the antibiotics, or if I should try the glucose test.

Wednesday, December 6, 2017

Searching for G.I. answers

I keep thinking my G.I. symptoms have gone again because they will disappear for as much as a week at a time. But then they comes back without warning.  This has continued since late July.

I saw a G.I. specialist last week and, get this, he thinks it is costochondritis!  I don't need a medical degree to know with 100% certainty it is not costochondritis.  He thinks it's costo because I told him that the area of most discomfort was just below my left, front rib cage.  But, look, just because that's where the discomfort is often the worst, costochondritis doesn't explain why the discomfort is often spread throughout my entire abdomen--much of which is far from my ribs. 

In any event, the doctor wasn't completely sure of his diagnosis because he also told me to try Zantac for 30 days in case the issue is actually related to overproduction of stomach acid.  (After the appointment I searched Zantac on a few popular ME patient forums and found that it is actually taken by some ME patients who believe they have mast cell activation.  There's mostly anecdotal evidence that it may calm mast cells, and it is often prescribed by at least one semi-well-known ME doctor for suspected mast cell activation)  So I started taking Zantac about a week ago and so far haven't noticed a difference.  (Also, so far, I haven't noticed any difference in my shortness-of-breath symptoms, proving perhaps once and for all, that my SOB is not caused by GERD as one doctor suggested.)

The doctor also ordered an abdominal ultrasound, and blood work to check iron, lipase, ferratin, along with CBC, Cardio CRP, and comprehensive metabolic panel.  I doubt this will yield any useful results, but it is part of the process for me (any many other patients) when a new symptom arises or an old symptom suddenly gets much worse. 

If I arrive at the date of my follow-up appointment in January and the G.I. specialist tells me the test results are all negative, then I'll probably conclude that this new symptoms is ME sending its inflammatory cytokines at a new area of my body. 

Saturday, November 4, 2017

My infectious disease specialist dismisses EBV results

I visited an infectious disease specialist this week (Dr. P), in part because I had heard that her referral would be a necessary step in obtaining approval for IVIG, which I've been hoping to be prescribed.  It didn't go as hoped.

As background: this was the same infectious disease specialist I consulted in 2011 when I was still in the "acute phase" and didn't yet have a diagnosis.  I remember being really confused and scared at the time.  In the end, she suggested I might have post-viral syndrome.  I thought maybe, upon seeing me again after 6 years, she would be surprised that I still hadn't recovered and perhaps become extra motivated to help find solutions.

I brought copies of my labs and she reviewed them.  She had two conclusions: (1) the four positive Epstein Bar Virus (EBV) IgM results are, according to her, "false positives," and (2) even if they are not false positives, there is no point in continuing to take Valacyclovir.

This first conclusion about "false positives" shouldn't have been surprising to me.  When I saw the first positive EBV IgM test result back in January, 2017, I thought it must be a mistake because I had already had EBV in the past and it was my understanding that once you've had a particular infection, your immune system will never produce IgM antibodies to that pathogen again.  And it certainly won't produce IgM antibodies for months or years on end.  However, after one of my other doctors, Mr. M, started taking these test results seriously, I suppose I concluded that perhaps I didn't fully understand how IgM antibodies work.  Maybe I had oversimplified it.

Now, after having consulted with the infectious disease specialist, I think she is probably correct.  But it still doesn't answer the question, why am I producing these consistently false positives?  Is there something about my blood that makes these false positives happen, and is that, itself, indicative of a disease state?  The tests were conducted by two separate labs which use different screening methods, so why am I testing positive at both?  Dr. P could only respond vaguely that "EBV serology is complicated."

In the end, Dr. P offered to order a PCR blood test to be absolutely certain that I don't have an active EBV infection.  PCR screening is, more or less, the "gold standard" for viral detection.  Rather than test for the presence of a virus indirectly, by looking for the immune system's response to the virus (antibodies), PCR screening looks directly for the virus itself.  I agreed that I wanted to know for certain, even though Dr. P said she herself was already certain.  I haven't given blood yet for this PCR screening, but I will soon.

There's no point yet in discussing Dr. P's second conclusion that taking Valacyclovir is pointless for EBV infections.  I have my doubts about that conclusion (it feels like the "standard medicine" approach, which puts on blinders when it comes to complex disease states like ME).  But I'll wait to see what the PCR screening reveals before I even consider that issue further.  If Dr. P is right and I don't actually have active EBV, then I can stop taking Valacyclovir immediately and don't need to make any tough choices.

Dr. P also made it clear that I have absolutely no hope of getting approval for IVIG because of my total IgG count which, despite being low in one subclass, is quite "robust." From everything I've been reading lately about how difficult it is to be approved for IVIG, I think she is probably right.  I'm going to move on from that quest.

Monday, October 30, 2017

Gut issues went from 3 to 10

I visited my GP last week about something unrelated to my gut, but I happened to mention my ongoing problem with tenderness throughout my abdomen.  As I wrote about before, the physician's assistant (PA) who initially diagnosed it said that the cause of the discomfort was likely the pancreas and/or spleen due to my ongoing Epstein Barr infection.  The pain and tenderness started in the last week of July and has been intermittent since.

My GP palpated the area where the pain is the worst (just under the bottom of my left rib cage) and she insisted that it is actually my stomach.  Thinking back a couple weeks earlier to a Dr. C appointment, he suggested the same thing but I didn't pay much attention.  And now, thinking about the pain and tenderness more, I'm fairly certain my GP and Dr. C are right -- it's the gut, not the pancreas.  (My reasons are too many to cover fully here, but one of the main ones is that, on bad days, the swelling and tenderness is all throughout my entire abdomen, from the bottom of the rib cage to the pelvis, both sides.)

For most of my life with ME/CFS (since 2011), gut disturbances have been pretty far down the list of severity of symptoms (notwithstanding the initial onset period).  That's not to say I didn't have gut problems, but I usually had more painful or debilitating symptoms that I had to deal with.  Now it seems the gut disturbances are the worst--maybe tied with the overall fatigue.

Right now, it almost feels like my entire abdomen could burst out of the skin.  The whole area feels swollen and bloated.  "Bodily functions" are a little off, but not in a way that seems to match the severity of the pressure I feel.  No loss of appetite.  I've now spoken with three doctors about this issue and none of them have anything useful to add or seem particularly concerned. (That's good I guess?)

My GP wrote a script for an acid-reducing medication but I don't feel that over-production of acid is remotely close to being the problem.  I didn't fill the prescription.  In the meantime, I've tried various diet alterations (although not in a very systematic way) and can't find any obvious cause in food. I might have wondered if there's a connection between the gut issues and my increased dose of Valacyclovir (3G/day), but the problems started months before the increased dose.   

I have an appointment with a gastroenterologist in the fourth week of November, and I am hoping to obtain some clarification from him.  Could this be just another strange symptom of ME/CFS that I have to live with until it mysteriously goes away?

In the mean time, in light of my ongoing positive Epstein Bar Virus (EBV) IgM tests, I went back and looked at my old lab results.  I knew that I had a positive test for EBV IgM (active infection) back in 2005, way before I got ME/CFS.   And I also thought I knew I had been thoroughly tested for EBV since falling ill with ME/CFS in 2011.  But when I looked back at my records of blood tests where EBV was tested post-diagnosis (twice in 2012, and once in 2013), I saw that the doctors only ordered tests for IgG antibodies.  My memory was only that IgG was positive, which led me to assume we'd also tested IgM and that was negative.  But actually, until this year, nobody ever tested my EBV IgM titers.  How could this oversight have happened?

So now I'm wondering if I've had positive IgM titers for EBV for a very long time.  I feel frustrated, but also a little hopeful that if I can somehow treat the EBV and bring IgM titers back in range, I might feel a little better.  So far though, that's not going so great.  I have an appointment with an infections disease specialist in two days.  I'm doubtful she will be of much help, but I'm going to give her a chance nonetheless.

Wednesday, October 4, 2017

Dr. C prescribes Viread

I had my latest appointment with Dr. C last week.  Dr. C is my ME specialist doctor, who I've written about under the Equilibrant Label in this blog.


Dr. C prefers to treat ME primarily with oxymatrine, and secondarily, he prescribes various anti-viral prescriptions.  Lately, he's been prescribing the anti-viral drug Viread (tenofovir).  He states that about 1/3 of his ME patients who try Viread have experienced improvements.  In a few cases, the Viread patients have achieved remissions, but this is the exception.

Viread was developed and approved to treat hepatitis B and HIV.  Prescribing it to ME patients is an off-label use.  It can be toxic to the liver if used for years, and so Dr. C insists on regular kidney function tests for those who are going to try it.

I agreed to try it.

Unfortunately, however, I didn't think through my plans during my appointment, otherwise I would have suggested I delay taking Viread.  I recently started taking a fairly high dose of Valacyclovir to deal with chronic Epstein Barr Virus (EBV) -- 1G 3x/day.  At this time, I don't want to add another drug that could tax the liver and/or kidneys at the same time.  The higher dose of Valacyclovir is supposed to last 3 months, at which time I'm supposed to return to a maintenance dose.  My plan now is to start Viread after I go back to the maintenance dose of Valacyclovir.

Lab Results and Pancreatitis 

Yesterday I received the results of another set of blood tests given last week.  Yet again, my IgM antibodies for EBV were very high (about 6 times more than the upper limit of the reference range.)  IgG antibodies were of course very high as well.  This marks the 4th such positive test dating back to January.  

The blood sample was given within a week or two of starting the increased dose of Valacyclovir, so I'm still hopeful that the Valacyclovir will help bring this condition under control.  It is really starting to worry me.  Chronic EBV infections can lead to cancer and organ failure, among other serious health problems.  I need to find an effective treatment.  Health-wise, I'm still able to bring myself into work each day, but I have no energy for anything else.  

In the last week of July, I came down with pancreatitis (inflammation of the pancreas), which is probably related to the chronic EBV infection.  I've told both of my ME doctors, Dr. C and Dr. M, about this but they didn't seem too concerned.  Dr. C palpated the area and didn't say much about it other than it's a common symptom for people with ME and he's surprised it took this long (about 6 years) for me to develop this symptom.   

Today after a particularly fatty lunch, the pain in my pancreas (and to a lesser extent, through my abdomen) got much worse.  I decided to see my GP about it and perhaps ask for some imaging.  This is probably unlikely to lead to any helpful treatments, but I want to rule out any serious problems.  Most likely, this will end up being just another symptom that gets added to my rotating list of ailments.  

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 physician's assistant 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 health 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.  

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.

Thursday, January 12, 2017

I have active EBV infection....again?

I received a phone call from my doctor's office today.  Results of a recent blood test show that I am positive for Epstein Barr Virus (EBV) IgM antibodies.  This shouldn't be possible since I have already had EBV in the past.

EBV is a common viral infection which almost 95% of the population has had but, for unknown reasons, it becomes chronic in a tiny portion of the population.  Over the years, research into ME has at various times focused on EBV only to lose interest and move on to other subjects.  It may be that EBV infections are part of the cause for some ME patients and not for others.

IgM antibodies are the first antibodies to respond to an infection.  They give way to IgG antibodies after a few days or weeks. If the person is ever exposed to the same virus again, the body would not produce IgM antibodies the second time.

Right now, I'm looking at my lab results from the year 2005.  They show as positive for an EBV infection, both IgM and IgG.  I was experiencing mononucleosis symptoms at the time, so these results from 2005 may indicate my first exposure to EBV.

I was tested for EBV again right after I came down with ME in 2011 (before any diagnosis), and the results showed negative for IgM, positive IgG—consistent with past infection.  Nothing surprising there.  It was tested again two times after diagnosis, in 2012 and 2014, but only IgG and IgA were tested.  Both times IgG was of course positive, and IgA was negative.

So this latest test result shouldn't be possible, as far as I know.  I called and moved up to doctor's appointment to Monday because I am puzzled and a little concerned.  It's possible this is merely a lab error, but then again, maybe not.  Maybe its time to go back on an antiviral medication such as Valacyclovir?