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.