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

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

Wednesday, 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.

Viread

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.