Still positive for EBV (IgM)

Among all the MCAS test results I received last week, I also learned that I am still IgM positive for Epstein Bar Virus (EBV), the virus that causes mononucleosis.  (I didn't mention this in Tuesday's post about MCAS because it was beside the point of that blog post.)

In 2016 and 2017, I was repeatedly test for EBV, and each test showed that I was IgM positive for EBV.  IgM antibodies are supposed to indicate a current, active infection, as opposed to past infection.  Despite various anti-viral treatments, the results never changed.  I ultimately hit a dead end both in terms of treatment options and in my quest for answers to this puzzle.  At about that time, I started experiencing SIBO symptoms.  Frustrated with the lack of answers about EBV, I began ignoring EBV and focusing on SIBO.  

Not surprisingly, EBV may still be an problem. 

The reason Dr. M tested me again is because we're going to make another, more serious attempt at obtaining insurance approval for inter-muscular IgG therapy.  I truly believe this would be helpful to me--and I feel more hopeful about the potential benefits (if I can obtain coverage) than any other treatment I've wanted to try.   

Adding to my sense that EBV may play a central role in my ME, there's this article, written by Cort Johnson on ProHealth in November of this year, about ongoing research and new findings regarding EBV and its possible role in ME.  

I admit, over the years I've waffled on whether EBV is a contributor to my ME, but I'm back to thinking it is more likely than not. If I had to bet right now, I'd bet that EBV is more likely than any other cause to be at the root of my ME--I and believe this even more than Dr. C's theory of entero-viruses.  I believe that others of my diagnoses and symptoms, such as SIBO, hypothyroidism, MCAS, are all caused by complications of this smoldering EBV problem.  That's my best educated guess at the moment.   

Doctor says I have Mast Cell Activation Syndrome

On of my doctors (Dr. M) has been encouraging me lately to get tested for Mast Cell Activation Syndrome (MCAS).  MCAS has been, of course, discussed heavily in ME circles in recent years.  Last year I read Dr. Lawrence B. Afrin's book on the subject, Never Bet Against Occam, which is considered by some to be the best book on the topic.  My only conclusion from reading the book was that the entire field of MCAS seemed too nascent and undeveloped (especially at the time of the writing of Dr. Afrin's book in 2016) and that we (ME patients) would need to wait for further research for anything useful to come out of this new topic of research.  For one, the list of ailments that Dr. Afrin attributed to MCAS at the end of his book might as well be the entire Physician's Desk Reference—it seemed (and still seems) unlikely that nearly every ailment ever acknowledged in western medicine (a little bit of hyperbole here) would have MCAS as its root cause.

Nevertheless, Dr. M has been studying this new field and she believed it was worth testing. She sent me to the lab for MCAS testing, which includes a 24-hour urine test and blood testing.  The test apparently can't be performed by an ordinary corporate lab, so I had to make a special appointment at my local hospital's lab. Even then, the hospital had to call my doctor's office twice to confirm the procedure, and I had to return the next day to begin the testing.

I received the results last week and they were positive.  Dr. M seemed thrilled because, she said, of the "dozen or so" patients she has sent for MCAS testing, I was the first to receive a positive result.  I felt less thrilled than Dr. M because, based on my limited understanding, the medical profession doesn't know exactly how to treat MCAS other than by trial an error with many, many kinds of histamine blockers and other mast cell inhibitors.  A positive test is like knowing you have an allergy to something, but not knowing what the trigger (allergen) is or how to treat it. (This is just an analogy, I'm not saying MCAS is an allergy.)

Here are the results, starting first with the negative results then moving to the positive.

Negative:

Tryptase Level                    Normals: <11.5 ng/ML     Mine: 2.4
Chromogranin A                 Normals: <93    ng/ML     Mine: 62
Basophils %                        Normals: 0-12   %            Mine: 6.3
Histamine Plasma               Normals: 0-1.0 ng/ML      Mine: 0.96
2,3 Dinor 11B
   Prostraglandin F2A  Normals: <5205 pg/mg    Mine: 2617
2,3 Dinor 11B
   Prostraglandin F2A  (ur)   Normals: <5205 pg/mg    Mine: 2478
N-Methylhistamine, Urine   Normals: 30-200 mcg/g    Mine: 125
N-Methylhistamine, Urine   Normals: 30-200 mcg/g    Mine: 122

Positive:

Leukotrine E4 (urine)        Normals:  <=104 pg/mg    Mine:  158
Leukotrine E4 (urine)        Normals:  <=104 pg/mg    Mine:  221
Postaglandin D2                Normals:  35-115 pg/mL    Mine:  193

Unknown - No Reference Range Established:

Postaglandin D2 (urine)                                               Mine:  98

To me, this raises more questions than it answers.  First, I note that all three of the urine test samples were tested twice.  I'm not certain why, but the results were fairly consistent between tests, so I won't worry about it.

More importantly, how significant are these results really?  Would other knowledgeable MCAS doctors say I clearly have MCAS, or are the results equivocal?  The Leukotrine results provide the following notation:

"Leukotrine E(4) (LTE4) >104 is consistent with the diagnosis of systemic mast cell disease, in adults.  The clinical sensitivity of LTE4 is 48% in patients with systemic mastocystosis.  When LTE4 concentrations are combine with other biochemical markers of mast cell activation, N-methyl histamine (NMH) and 2,3-dinor 11-Beta Prostaglandin F(2) Alpha (2,3BPG), the clinical sensitivity increases to 92%. Results should be interpreted  in the context of the patient's clinical condition."

I don't speak laboratory-jargon, but this seems to indicate that the a positive Leukotrine test, by itself, is not very reliable.  I'm not sure what the positive Postaglandin D2 test adds to this analysis.  The results of that test include the disclaimer:

"This test was performed using a kit that as not been cleared or approved by the FDA and is designated as research only.  The analytic performance characteristics of thes test have been determine by [name of lab].  This test is not intended for diagnosis or patient management decisions without confirmation by other medically established means."   

I didn't necessarily feel this way when I started writing this post, but my confidence level in this new diagnosis is shaky at best.  I have to do my own research before I decide whether and how to act on this diagnosis.  I know many of you are far more knowledgeable about MCAS that me.  I'd love to hear your impressions of and reactions to this post. 

More on SIBO

When I last posted about SIBO in December, I had been told verbally by my doctor's office that the SIBO test came back positive, but I didn't yet have the results. I was, at that time, slightly concerned that the test could be a false positive.

Now I've received the written results and I am less concerned with the possibility of a false positive.  I feel fairly certain that I do have SIBO.

SIBO breath tests look for increases in either methane or hydrogen after drinking a specified amount of glucose or lactulose.  While my results showed a slight increase in methane, they showed a very great increase in hydrogen.  One common SIBO test interpretation states that "a rise in hydrogen of more than 20 ppm after 90 minutes should be considered as diagnostic of SIBO."  In me, the hydrogen rose more than 80 ppm within 90 minutes, four times more than the minimum for a SIBO diagnosis.

Dr. M prescribed rifaximin, the most commonly prescribed antibiotic to treat SIBO.  When I arrived at the pharmacy, the pharmacist advised that my insurance doesn't cover rifaximin.  Paying for it on my own is not an option.  My plan now is to re-visit my doctor later this month (mid-January) and work with her to (hopefully) obtain insurance pre-authorization for rifaximin.

In the mean time, I have switched my diet to a common SIBO diet known as the low-FODMAP diet.  So far, this diet has helped with symptom control, but has not eliminated symptoms.   The bloating and discomfort I was previously having has been mostly gone since about day 3 of the diet.  However, I only switched to the low FODMAPS diet about 2 weeks ago, so it is possible this could be just another break in the symptoms (which I would get sometimes even before I changed my diet.)

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.]

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.

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.

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.

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.

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.

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?

Allergy Testing Results

Lately I've been on a downswing in my health.  As a result I've gone through a period of renewed answer-seeking.  As one part of this quest for more answers, I've visited a few doctor specialists including a pulmonologist and allergist/immunologist.

Some say it's a waste of time to consult doctors who are not specialists in ME/CFS because they are generally "clueless."  I agree to some extent, although I think it's possible that, under certain circumstances, specialists can help a patient solve a small portion of the ME/CFS puzzle.  I also think it can be dangerous to always write off new symptoms as "just another manifestation of ME/CFS."  That's not an assumption you want to be wrong about.  It's better to be safe.

I had a follow up appointment with the allergist on Monday, still trying to find answers to my shortness of breath and post nasal drip. They conducted an allergy skin test in which they tested me for 50 of the most common allergens--mostly environmental allergens, but the test included a few of the most common food allergies.

Allergy Skin Tests

For those that haven't had this test, the nurse applies a grid to the patient's skin.  The grid contains a number of needles that each contain a small amount of a potential allergen.  Each needle introduces the allergen into the skin by puncturing or scratching the surface.  The test is usually performed on the forearm or back.  For me, they performed the test on the back because the forearm doesn't provide enough space for 50 punctures.

The test doesn't hurt; it simply itches slightly.  After 15 minutes the nurse comes back and looks to see where, if any, there are red marks (inflammation) on the skin.  The nurse keeps track of where each of the allergens was administered and that tells him/her what you're allergic to.

My Results

The results are given with a score of 0 to 15.  Any scores in the 7 - 11 range are considered highly indicative of an allergy.  For me, nothing scored that high.  A handful of results scored in the 2-5 range, indicating a "mild" allergy.

Mold.  I've recently had two different blood tests that, according to my doctor, revealed I am not genetically predisposed to react to mold.  This is consistent with my own experience--mold avoidance never did anything for me.  The allergy test did, however, show reactivity to two outdoor molds. According to the allergist, the results do not mean I need to check my home for these molds because they only grow outdoors.

Food.  They tested for wheat, egg, milk, and peanut allergies and I was negative for all four.  However, the next day after the test, I read in "Why Can't I Get Better?" by Dr. Richard Horowitz that scratch tests only test for IgM reactivity -- immediate, severe reactions.  According to Horowitz, one can have delayed reactions (IgG antibodies) which don't reveal until 24 - 48 hours later.  I may need to try an elimination diet to determine if I have IgG food allergies.  This is something I might explore in the near future.

Dust. I was negative for dust allergies (dust mites.)  This surprised me somewhat.  I thought that if anything could explain why I often seem to have worse SOB and PND in my car, it would be dust.

Trees and Weeds.  I only had mild allergies to 2 of the 15 trees and weeds tested.  One was a tree that only grows on the East Coast.  The other was olive trees (the leaves, not the pollen.)  I asked my doctor if this means I should avoid taking Olive Leaf Extract (OLE) as a supplement (something I was taking as of Monday, and which was an ingredient in another supplement I was taking.)  She said, "yes" but she was clearly guessing.  Subsequent Googling of that question lead to conflicting results: some said yes, some said no.  I'll probably avoid OLE to be safe.

Cats and Dogs.  I have mild allergies to both cats and dogs.  I knew about the cat allergy, but not about dogs.  Several months ago, my kids asked if we could get a dog.  Having been bitten by a dog as a child and never really being much of a fan of dogs since, I told my kids we couldn't get a dog because I was "allergic."  Apparently that wasn't a lie!

My Conclusions

The only useful information to come out of this allergy testing was ruling out IgM allergic reactions as a major contributor to my inflammation--at least for the 50 common allergens we tested.  There is some value in that.  I also learned that maybe I should avoid olive leaf extract as a supplement.  Unfortunately, I still don't have an answer as to why my SOD and PND often gets worse in my car.

My Plan to "Solve" My Respiratory Problems

At the end of my last post, I wrote that I'd finally decided my shortness of breath wasn't going to go away on it's own.  Clearly, I'm going to have to do something about it.  As a brief review, I've been experiencing very bad shortness of breath for approximately 4 months.  It comes and goes, but it's there more than 50% of the time.  It is always accompanied by post-nasal drip, and occasionally, when it's at its worst, I experience numbness and tingling in my nose, hands, and feet.  I have not been able to determine anything that consistently triggers it.  It often seems to arise or worsen when I'm in my car, but not always.  Many times I can drive my car and be perfectly fine.  Stimulants such as coffee or tea also seem to to trigger it, but again, not always.

My Lyme literate medical doctor (LLMD) thinks this will all be explained when I get a positive Babesia diagnosis--something she seems certain is inevitable.  I gave a blood sample yesterday, which is being sent to the IGenix lab (supposedly the gold standard in Lyme and Babesia testing). Frankly, I don't think I'm dealing with a Lyme or Babesia.  It would be difficult to explain all of the reasons why I feel this way, so I'll save it for another post.  Nonetheless, I want to fully explore those possibilities and hopefully rule them out once and for all.  I receive the results of the IGenix tests in early December. 

In the meantime, I visited my primary care physician (Dr. L). and told her about the shortness of breath and related problems.  She first tried a nebulizer containing essentially the same medicine as an asthma rescue inhaler.  No improvement.  Next, she sent me for an X-ray.  I knew this would be pointless, but sometimes you have to let your doctor work through their mental "flow chart" until you can get to more fruitful diagnostic testing.  

Next, Dr. L is sending me to a pulmonologist.  I think this will again be pointless.  I saw a pulmonologist during my acute phase about 4 years ago.  I was having shortness of breath at that time too, although not as bad as now.  He gave me a spirograph test and a treadmill exercise test.  I passed both tests just fine.  If I pass again this time, I'd really like to see an allergist as my next appointment. Given that the shortness of breath always comes with post-nasal drip, it doesn't seem likely that I have a lung problem alone. It seems more likely that something is causing inflammation throughout my entire respiratory system, from the nasal passages to the lungs. This would be more in an allergist's wheelhouse--or so I figure.    

Not content to leave everything up to my doctors alone, I tried a few experiments to see if I could treat the problem on my own.  I have a few prescription steroids and oral anti-inflammatories in my medicine cabinet.  So here's a list of things that had absolutely NO noticeable affect:

1.  Oral Prednisone, 5 mg 

2.  Vicodin 5mg/300mg

3.  Azelastine Rx nasal spray

4.  Flonase OTC nasal spray

5.  Breathe Easy Herbal Tea (yes, I tried this. I was desperate!)

6.  Fresh air (possibly more experimentation is needed here - can't completely rule this out.)

At this point, I'm starting to get worried that I'm running out of possibilities.  Shortness of breath is one symptom I really don't want to "just live with."  This is crazy!  With all of the diagnostic technology available to doctors today, how can they not figure this out?  

Negative for MARCONS, positive for Staph

One of my doctors (Dr. M) and I have recently been trying to figure out why my two strongest symptoms over the last six months have been nasal congestion and shortness of breath.  These two symptoms always flare up together.  It's as if inflammation hits both areas (sinuses and lungs) at the same time, and usually lasts for 24-48 hours before abating.  Even when it is abated, my lungs always seem to have a slight feeling of air hunger these days.

Dr. M gave me a nasal swab test.  (This involved sticking a Q-tip up my nose "2 to 4 inches"!)  She was looking to diagnose exactly what kind of bacteria had taken up residence in my nasal passages. In particular, she was looking for MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococci).

A few minutes ago I received a call from my doctor's office stating that I am negative for MARCoNS but "positive for other Staph infection consistent with mold exposure."  It was the office manager calling to give me this information, so it's not clear if the conclusion that the results are "consistent with mold exposure" actually came from my doctor.  For reasons that are too complicated to go into in this post, I have always been skeptical that biotoxins play a role in my illness.

My next appointment will be interesting because I'm very curious to see where Dr. M wants to go with my treatment plan.  For the most part, the first year I've been with her has been focused on various diagnostic tests.  We haven't even gotten to a treatment plan yet!

Can't Seem to Complete Lyme Provocation Test

In a video post from April, I explained that my new doctor believes I have chronic Lyme disease, but the results of a Stonybrook Lyme test were inconclusive.  As a result, she (Dr. M) wanted me to conduct a Lyme "provocation" test, in which I take an herbal supplement (called A-L Complex), which is supposed to stimulate the immune system to kill the Lyme-causing borrelia bacteria. Apparently, after the immune system kills some of these borrelia, the Lyme blood tests are more likely to detect the presence of the borrelia (because live borrelia are adept at hiding.)

My instructions were to begin taking the A-L Complex starting with 3 drops per day, then, three days later, increase to 6.  Then, three days later, up to 9, and so on up to 20 per day.  After I reach the 20-per day dosage, I was supposed to repeat the Lyme test.

The problem is that even 3 drops per day made me feel awful--brain fog, headache, muscle pains.  So, on my own, I reduced the dose to a mere one drop per day, and still felt terrible.  (It's interesting that the directions on the bottle of A-L Complex instruct the user to take only 2 drops per week.  We're going way off-label here.)

Over the last month or two, I've continued to experiment with fractional doses, hoping that I could find a way to slowly titrate to 20 drops per day.  As it stands now, I don't see how I will ever be able to make it to 20.  I can't even handle 1.  Granted, I'm being a little bit of a baby about this.  I could do it if I really needed, but it would be near impossible to keep up with my home and work responsibilities at the same time.  So I'm trying to figure out my next step.  I either have to set aside a month in which I reduce my responsibilities and devote myself to titrating and testing, or return to my doctor and admit failure.  I could ask my doctor if there's a "Plan B"--perhaps using antibiotics instead of A-L Complex.  (Antibiotics are, I believe, the standard for Lyme provocation tests, but I originally declined.)   Or perhaps my reaction to A-L Complex is evidence enough that I am dealing with Lyme?

New doctor thinks it's Lyme... I'm not so sure

Part 1

                                                                             Part 2

New Blood Test Results: A Mixed Bag

I had my latest appointment with my other ME/CFS doctor yesterday, Dr. W.  My appointments with Dr. W tend to be fairly routine at this point: we check my blood test results, re-fill prescriptions as needed and sometimes tweak my supplements and Rx dosages.  The most interesting aspect is receiving my blood test results and following the progress of treatments with actual data.

This time, we tested some key immune markers that hadn't been tested in nearly two years, namely immunoglobulin (IgG) subclasses, and (a more indirect indication of immune health) candida antibodies.

As I've written about before, over the last two years I have gradually increased my "baseline" health.  The improvements have been moderate, but certainly noticeable.  It's definitely something more than just "getting used to it," although that is a factor too.  The improvements have been nothing world-beating, but then again, I would consider it a victory even if I managed to hold steady and not slide backwards.  I read about so many of my fellow patients who describe a long, slow slide backwards into poorer and poorer health, and I think that any patient who can at least maintain their baseline should be relatively happy.  A slight improvement, like mine, is something to be celebrated.

At the same time, I've been looking for some indication in my blood test results to explain why I've been feeling a little better lately.  I continue to be disappointed.

IgG Subclasses

I first had my IgG subclasses tested back in April, 2012--over two years ago.  While subclasses 1, 2 and 4 were in the normal ranges, subclass 3 was low (12, with a reference range of 22-178 mg/dL). Now two years later I had it tested again, after years of immune modulating supplements, probiotics, optimal Vitamin D3 levels, and a number of other treatments designed to boost or modulate my immune system, like Equilibrant, ImmunoStim, and others.  My new results: 12 again.

Dr. W states that my three other IgG subclasses are also low, although technically not out of range.  In each case, the numbers are in the lower third of the reference range, but this is nothing that would strike me as alarming.  Those numbers also remained about the same from 2 years ago.

Candida Antibodies

My Candida antibodies have actually gone back up (that's bad) after going down for a while...  While candida isn't a direct measure of immune health, candida overgrowth is a solid indicator of a weak immune system.  Candida overgrowth simply doesn't occur in people with healthy immune systems.

I used to test my Candida antibodies much more frequently, but my doctor stopped once it became clear that I had a good anti-Candida diet in place and I was also taking daily oral Nystanin for a while.  Here are my results from late 2011 and early 2012, alongside my recent results in bold.  The test measures three types of antibodies for a complete picture (IgG, IgA, and IgM).  Anything 1.0 or over is considered "out of range" on the high side:

              Dec. '11     Feb. '12    Apr. '12  May, '14

IgG         1.3            1.2            1.2         1.7

IgA          3.7            3.3            2.6         3.1

IgM         1.4            1.3            1.2         1.0

I supposed I could view these results either positively or negatively. On the one hand, I had been taking Nystatin at the time of the middle two tests (Feb and Apr. 2012).  Now, I haven't taken Nystatin for over a year and yet two of the three antibody types (IgA and IgM) are lower than the average of the prior three tests. Could this mean that all my diet and immune modulating work has helped?

On the other hand, IgG antibodies for Candida are higher than they've ever been, including when I was in my acute phase.  IgG and IgM antibodies, I believe, are found in the blood. You don't want to see those numbers go up because that could mean candida is becoming systemic. Candida overgrowth in the gut is one thing, but real problems begin when it becomes systemic and enters the blood stream in significant amounts.  It is not overly encouraging that IgM antibodies continue to drop, as those antibodies are usually most present in an early infection and one would expect them to wane as a long-term infection continues.  (Source).

I will be trying a month-long course of Diflucan to try to stop the Candida.  Unlike Nystatin, Diflucan can actually clear candida from the blood, not just the digestive tract. The downside is that it is harsh on the liver and must be used sparingly and under close medical supervision.

These results are just a little frustrating because I have been pretty damned disciplined about my diet and taking probiotics.  I would have expected better results.  There's not much else I can do (Diflucan is not a permanent solution), and feeling like you don't have any control over a bad situation is the worst feeling of all.  (I know, "welcome to ME/CFS," right?)

                                                                      Other Results

While not exactly related to immune function, I was shocked that my glucose tested high at 102 (range 65-99).  I was fasting on the morning of the test, and I have been a saint about sticking to my Paleo diet.  Genetically I tend to have high blood sugar, but again, I don't know what else I can do to control this.  I know there are blood sugar lowering medicines, but I don't want to add another pharmaceutical. 

Blood ammonia levels were also high 50 umol/L (normal range < or = 47).  High ammonia levels is a problem according to Dr. Yasko and her methylation protocol.  Now I have to take a couple steps back in that protocol as well. 

My Thoughts

It's not that I haven't seen any progress in these or previous blood test results.  Results like vitamin D3, thyroid, and testosterone levels have been brought back to close-to-optimal levels.  And perhaps this explains my slight improvement.  But honestly, I won't be happy unless/until I see improvement in my immune system.  Like many, I believe that immune dysfunction is at the heart of ME/CFS.  

While I know better, sometimes I had allowed myself to imagine that these slight improvements meant I would slowly climb out of this hole and get better and not have to worry about if I'll be able to play with my daughters and go on vacations and continue to work, etc.  

As Dr. W says, once you have Candida overgrowth, it is a life-long battle.  "It's a nasty, lifelong companion" he always says.  The same may be true for my ME/CFS in general.  In the best circumstances, you can manage it and hopefully stave off a backward slide and maybe even improve some, but I'm not sure that actually correcting one's immune system to the point of being "cured" is in the cards.  

How do we reconcile that with those occasional articles that claim a certain percentage of ME/CFS patients "recover?"  (Example)  I think the answer is that the surveys that produce those results have different ideas of what it means to "recover" than I do.  Probably many of them would already consider me "recovered" because I am more functional than average ME/CFS patient.  I can do things.  

But I certainly don't consider myself recovered, or even close to it.  So that's the rub: a realistic goal for me is to seek to be as healthy as I possibly can, but not to have expectations of ever being able to be carefree about my health again.  The daily frustrations and unpredictability of this disease will always be there in one sense or another.  The threat of a major relapse will perpetually be my shadow.  My task is to carve out as happy of a life as I can within those parameters.  

The "realities" that I'm writing about here are not new to me.  I've known them for a long time and have probably written about them before in this blog.  But I find that I sometimes need to reset my expectations.  My blog is called Quixotic because I have a tendency to stay optimistic even in the face of information that tells me I shouldn't be.  That's fine, but my challenge is to keep that spirit while at the same time understanding the situation accurately on an intellectual level.  With ME/CFS, and many other diseases no doubt, there's so often a conflict between the spirit and the intellect.  True peace of mind comes when we find a way to balance the two.

Low potassium confirmed

Last week I wrote a post about how I had used my daily health chart to solve the mystery of a mysterious crash.  I had pinpointed the cause to low potassium.

This week I received the results of a Urine Essential Elements test, which I submitted to Dr. Yasko in early March. Written all over the results, in Dr. Yasko's handwriting, was "Potassium is needed" and variations on the same.  It was nice to have that official confirmation.  I was right.

I'm reminded again that, while these various supplement and treatments help, they require a careful balance that has to be monitored periodically.  We're experimenting with "repairing leaks" and "patching holes" in ways that that simply don't have much history.  There's no manual.  Because of that, I sometimes feel like I have to treat my health maintenance like a job.  

Amino acid test results

As some of you know, I'm in the process of implementing a nutrigenomics plan based on the work of Dr. Amy Yasko.  Basically, under Dr. Yasko's plan, genetic testing (which I did earlier this year) is just the first step in a long process.  You create your initial diet and supplementation plan based on your genetic profile.  Then, after implementing that plan for a couple of months, you (and your doctor) order various tests to determine how to tweak your treatment plan.  You tweak the plan, then test again later, and further tweak it.  And so on until the test results all come up optimized, which can take years.  At that point, you should be feeling significantly better, in theory.  Probably not cured, but functioning at a much higher level.

I'm at the point now where I've implemented the so-called Step 1 (basic support) supplements and am looking for more information about whether and how to move on to the next step.  So I ordered a urine amino acids test (UAA), which is one of the common "next steps."  The test kit is ordered over the internet and the sample is then mailed back to the lab on ice.  I received my results this week.

First, the results are encouraging because many of the findings that my genetic profile would have predicted were confirmed by the UAA test.  This gives me a little more confirmation that there is, in fact, a verifiable process to this program.  The other nice surprise is that, even though the lab samples are tested at a lab in Illinos, they are then sent to Dr. Yasko in Maine, and she personally writes handwritten suggestions based on the results.  I didn't know that this was part of what I was paying for, so it was a nice added value.

The results themselves come in the form of a 6 page report, with the first 3 pages being the raw lab values, and the next three pages being a computer generated discussion of any significant findings. So while 76 different markers were tested, I'm only going to discuss the ones that were flagged for me.

Before I discuss the different supplements that I will be taking, let me talk about my concern about taking too many supplements.  Like a lot of PWME's, I sometimes wonder, when is enough enough?  But my answer for now is that (1) I'm going to give this program the time it deserves and reevaluate.  If I haven't significantly improved, then I will stop all the supplement madness.  But I need to discover the answer for myself or else I'll always be left wondering.  How long it will take, exactly, I don't know, but it could take up to a couple of years.  I'm OK with that.

(2) Also, keep in mind that when I add new supplements, I'm often discarding old supplements that either had no noticeable benefit, or very minor benefit.  I try to ensure that all of the supplements that I take at any give time fit into my supplement case.

How My Results Tell Me I Should Tweak My Plan

General impressions:  There is a contingent of ME/CFS patients and doctors who believe that the key to ME/CFS is gut dysfunction.  Probably the most famous proponent of this theory is Belgian doctor Kenny DeMeirleir.  This theory isn't too difficult to believe when you read the mountain of evidence stating that immune function begins and ends in the gut.  

I have always disregarded the importance of gut function with respect to my own ME/CFS because I don't experience strong gut symptoms like other patients.  But these UAA results change that.  Out of 11 "presumptive needs / implied conditions" listed on my UAA report, the most significant is "Abnormal intestinal microflora."  The textual descriptions of my various deficiencies all seem to point back to malabsorption of nutrients through the gut.  I was blown away by the number of times the term "protein malnutrition" was used, especially considering that my diet is certainly not lacking on protein.  The implication is that I have absorption problems.

As a remedy for general "abnormal intestinal microflora" I'm supposed to take a supplement called Vitaorgan (which is currently out of stock).  Among other things like amino acids, it actually contains "Immunoglobulin concentrate from bovine serum."  

Essential Amino Acids

High Taurine:  The first essential amino acid that is problematic for me is taurine (950 out of 170-1200).  This is a big one, and Dr. Yasko focuses a lot on getting taurine "under 50%" as an important milestone for those with the CBS mutation (like me).  In addition to the CBS protocol that I'm already doing (Yucca, charcoal, and reduced sulfates in diet), I'm going to add CBS+ RNA drops.  

Low Threonine - Next, I have very low threonine (60 out of a range of 60-230), which is an essential amino acid, critical to immune function.

"Threonine is an immunostimulant which promotes the growth of the thymus gland. It also can probably promote cell immune defense function. This amino acid has been useful in the treatment of .....multiple sclerosis [another neuro-immune disease] at a dose of 1 gram daily."  (DCNutrition.com)

The recommended treatment for low threonine, according to Yasko's plan, it a supplement called NaturoMycin.   NaturoMycin is indicated for "aiding the body's natural microbial balance."  I'm not yet sure how microbial balance helps with threonine levels.  I will research that further when I get a chance.  I'm also supposed to consider getting a CSA/GIF (stool sample) test to further narrow the reason for my dysfunctional gut.

Low Valine:  Another essential amino acid called Valine is also slightly low.  The indicated treatment here is to supplement with biotin (vitamin B7) and 1 drop of Adenosyl- vitamin B12.  Adenosyl- B12 is an indicated treatment for "bacterial support for aluminum and lead excretion" - again pointing to the gut. (APTR p.173)

Non Essential Amino Acids

Low Glycine:  My low glycine level of 590 out of a range of 400-1800 apparently means that I need to implement SHMT support.  SHMT is one of my genetic mutations (+/-), and support for it comes in a from of folate called "5 formyl THF" and lactoferrin (for regulating iron levels).  (APTR p.128)  I'm holding off on ordering these supports until I can research them further.  

Glutamate:  My glutamate levels look normal when I look at the range (15 out of 5-45), but the indication is for me to supplement with a spray that balances glutamate/GABA.  Glutamate is an excitotoxin that, in high levels, destroys nerves in the brain.  Since my glutamate level is in the lower half of the reference interval, I'm not sure why this is indicated for me.  Need to research.

Gastrointestinal markers

Ammonia:  I had already had my blood ammonia levels tested, which were very high.  This urine test confirmed that they are high, once again indicating that the CBS mutation is working to ensure that nutrients are being converted into ammonia and sulfates instead of much needed glutathione.  This is yet another indicator that I need to work on CBS supports.  

I also had high urea: 410 (150-48).  The combination of high ammonia and high urea apparently indicates I should be taking special capsules that HoliticHeal developed specifically for people with MTHFR A1298C mutation (for which I'm heterozygous), called MTHFR A1298C capsules.  One thing I don't like about this supplement is it contains Green Tea Extract, which induces Th2 immune response, but I may try it anyway.  But this supplement is a "long route" support and won't be added until later anyway, so I have some time.

Interestingly, my homocysteine levels are also very low:  0.22 out of a normal range of <5.  This is another indicator that the CBS mutation is affecting me.  Previous blood tests actually showed that it was a little on the high side of optimal, so I'm not sure how to reconcile these conflicting results.  For low homocysteine, I'm supposed to use an oral spray called resveratrol. (That's not a typo, it's really spelled that way.)  Resveratrol is an antioxidant that's found in various foods.  It's not clear why this is supposed to help low homocysteine levels.  Need to research.

Magnesium Dependent Markers

Low Phosphoetheanolamine, Phosphoserine, and Serine:  The low levels of these three amino acids apparently mean that I need more magnesium.  I'm already taking a magnesium supplement, but taking less than the bottle suggests.  Maybe I just need to increase my dose to the amount recommended on the bottle.  In addition, the official recommendation is to supplement with something called PS Complex (or PS/pe/pc) - an amino acid complex.  This supplement is part of a trio of three supplements that the Yasko plan calls "shortcut supports" (along with DHA and Methylation RNA) because they support a shortcut around one of the common methylation cycle defects.  

B6, B12, Folate Dependent Markers

Finally, there is a section of the report that lists B6, B12, and folate dependent markers. Three of these are extremely high for me, all way out of normal range.  Cystathionine is 65 (range: 7-40), 1-Methylhistidine is 330 (range: 75-240), and 3 Methylhistidine is 1100 (range: 50-900).  So here we've gotten to the meat of what I need to supplement the most -- the centerpiece of all methylation protocols -- Vitamin B12.  But it's frustrating because I'm not supposed to start with these supports until I address the CBS mutation. 

The first one, Cystathionine, actually indicates a deficiency in a form of B6 called P-5-P.  However, people with CBS up-regulation should to avoid P-5-P.  So I need to resolve, through further research, whether or not I'm supposed to take P-5-P.   

I'm also told that I'm supposed to ensure that lithium is balanced (through a hair metals test, or HMT) before working on B12.  This is a relatively inexpensive test and I have already ordered it.

For those also doing Yasko's protocol, I learned that Dr. Yasko will not be commenting on any test results during the month of July so that she can work on a revised version of her book.  This is good news, as I've noticed lately that some of the information in her current version of the book seems to have been superseded or revised by newer information on her website.  It will be much easier to have all this information in one place.   

Conclusion

With every new test, there are more questions than answers.  But, there are only a few ME/CFS patients that I am aware of who have truly stuck through this process and had the patience, functionality, and financial ability to do it fully.  Those few people report they are doing significantly better.  So it's my hope that, despite a steep learning curve, this will all eventually begin to come together and lead to improvements that can be verified by tests and confirmed in how I feel.  

Trying to rule out Lyme when you have ME/CFS: not easy!

When you have ME/CFS, from time to time, people will suggest that you might actually have Lyme disease.  The symptoms of Lyme are virtually identical to ME/CFS.  In fact, Dr. Paul Cheney apparently believes that ME/CFS and borrelia infection (the bacteria that causes Lyme)  are "exactly the same" illness.  He states that borellia just happens to be the trigger of ME/CFS's cascade of symptoms for some, while for others, the trigger is some other pathogen.  Basically, there are different routes to the same destination, borellia being just one of many.  (Again, this is an oversimplified paraphrasing. The full comment can be heard here at 13:00 to 16:32)

If that's the case, does it matter if you have Lyme of ME/CFS?  Yes, actually it does matter because your treatment options will differ if borellia is at the root of your illness.  In that case, long courses of antibiotics are usually indicated.  But if you don't have borellia, or some other chronic bacterial infection, most doctors will tell you to stay away from long courses of antibiotics.  Antibiotics will destroy your "good gut bacteria", potentially weakening your immune system, so it's best not to use them unless necessary.

So it becomes pretty important to know if you have Lyme or not.  But of course the problem is that Lyme tests are notoriously inaccurate.  My results to a Western Blot test were negative, but if you believe some, that means virtually nothing.  People will tell you that you have to find a really good LLMD (Lyme literate medical doctor) for a diagnosis based on a clinical evaluation.  I'm extremely skeptical of this.

Without a specific recommendation from someone I trust, I can only search the internet for so-called "Lyme experts" in my area.  There are a few.  But when I look carefully about what other patients are writing about these doctors, it seems that they basically diagnose anyone with a pulse with Lyme disease.  I don't want some B.S. diagnosis just for the sake of a diagnoses.  Call me crazy, but I want to know whether I actually have borellia in my system or not.  You wouldn't think it would be too difficult to get an answer, but apparently borrellia is just that tricky.

In the absence of an easy answer, I had recently decided to ignore the Lyme issue for now while I worked on other issues (like methylation).  But, as luck would have it, my friends at HealClick recently posted this great piece on more advanced Lyme screening options.  It really is worth the read.

I do wonder how difficult it will be to get one or more of these tests ordered, however.  I will look into it at upcoming doctor appointments and update this post later.

Treatment and Personal Update

Rifampin:  As I described in this post from March, Rifampin is an antibiotic that also has antiviral properties which have helped a number of ME/CFS patients improve dramatically, according to one of my doctors, Dr. C.  Dr. C advised me to take Rifampin when I had time off of work because, if the drug had it's intended effect, I would undergo strong flu-like symptoms.  The idea is that the flu is supposed to "kick the immune system back into regular functioning."

This past week, I took time off of work to bond with my new daughter, so I also seized the opportunity to take the Rifampin.  So far, nothing has happened.  If something was going to happen, it's supposed to happen about 7-14 days after beginning a week-long course of the drug.  I began taking Rifampin about 10 days ago and finished 3 days ago.  It doesn't feel like anything is going to happen, but I wasn't holding my breath anyway.

Nutrigenomics:  I'm still implementing Step 1 (Basic Supplement Support) of Dr. Yasko's plan, and taking my time with the process.  Trying to be patient.  In the meantime, I received results of a blood ammonia test which confirmed that I have high serum ammonia levels (the highest number it can be without being out of range.)  This is more confirmation that I have the CBS & BHMT mutations, so I hope to use these results as further motivation to stick with the Yasko protocol.  The protocol is somewhat expensive and a hassle to track, but when I put all of the evidence together, it seems abundantly clear that my methylation cycle is deficient and needs to be treated.  (For background on this, see the Nutrigenomics tab on the right-hand side of the page).

Personal:  Having a second baby around the house certainly has not been easy, but at the same time, it has not been as difficult as we had been lead to believe by others.  Some of our "couple friends" had cited the mantra that 2 kids somehow equals 3 times the work.  So far, it hasn't been that bad.  Of course, it's been harder on my wife because she's the one who stays awake half the night breastfeeding, but even still, she agrees that it's been about as much extra work as we would have expected--that is, about double.

Right now, 3 of the 4 of us have colds, my wife being the only one that was spared (so far.)  It's hard to see my newborn daughter struggle to breathe through a stuffy nose, but there isn't much we can do but wait and occasionally use a rubber-bulb nasal aspirator.  As for myself, I started attacking the cold with zinc, liposomal vitamin C and thymic protein at the first signs of symptoms (5 days ago), and I truly believe these treatments worked.  Some cold symptoms still linger (sniffles & slight cough) but it doesn't seem to be making me feel much worse.

In the meantime, I returned to work yesterday and learned that one of my cases is likely to go to trial in mid-June.  I had sought a continuance, and had very good reasons to support this request, but the judge inexplicably denied it.  This means that the next two months will be insanely busy, and that I will have to conduct a two-week federal jury trial with millions of dollars at stake.  This upcoming trial makes the last trial that I wrote about in February seem like a mere traffic court hearing.

My firm has already determined that I will act as lead counsel for the trial, but the good news is that I will have a second attorney helping me.  If I have a crash in the middle of trial, I will have to "power through" somehow, but it is also nice to know that I have backup.  What I'm more concerned about is the large volume of work and long hours that are ordinarily required to prepare for trial.  I've asked the firm for extra support and "manpower" so that I don't have kill myself just getting to trial.  Before ME/CFS, I might have tried to handle it all myself, working 14 hour days and weekends. Now, no.

With two sick babies at home and a major trial on the horizon, it's unlikely there will be many times in my life as chaotic.  But a few years ago, this trial might have made me more anxious.  The combination of having kids and getting ME/CFS has given me perspective about what's most important.  Of course, it's always easy for me to sound calm when, as now, I'm feeling fairly decent today.  Let's see how I feel when it's, say, 3 days before trial and I'm in the middle of a crash.  When I'm at my baseline, it's often hard for me to imagine ever crashing again, until I do, and the cycle starts over.  For now, I try to focus on the sense of accomplishment I will feel when the trial is over.