I'm now treating with Cromolyn for Mast Cell Activation Syndrome

In December, one of my doctors (Dr. M) gave me a diagnosis of Mast Cell Activation Syndrome.  I wasn't entirely confident about the diagnosis, but am willing to try various recommended treatments.  Dr. M first recommended that I try successive two week trials of each of the four major brands of over-the-counter H1 blocker allergy medications.  (I don't want to write the brand names in this post, but they are well known.)  I tried all four and didn't notice a significant difference with any of them.

Dr. M had recommended that if the 1-dose per day regimen didn't work, that I should try up to 3 doses per day.  I never tried that because I'm hesitant to exceed the box's indications.  Perhaps in the future if I read about other MCAS patients having success with larger doses, I may try it, but I haven't yet sought out recommendations from other MCAS patients.  My doctor also wrote a prescription for cromolyn liquid, 100mg 4x/day, in the event that the over-the-counter options failed.

In the meantime, after being in more-or-less remission from SIBO for about 4 months in late-2018 and early-2019, the symptoms started to return in March. (My SIBO symptoms are feeling of intense inflammation and bloating throughout the gut, accompanied by constipation—I have the methane-based type of SIBO.)  As you can imagine, this was a disappointment for me. By mid-May, the symptoms were as bad as they have ever been.

When the SIBO symptoms reached a peak in late May, I decided to fill the cromolyn prescription on the chance that it helped with the SIBO symptoms.  It certainly seemed to help.  Almost immediately after I began taking the cromolyn, my gut symptoms improved.  (As I found out later, there is a connection between SIBO and MCAS, so it might make sense that cromolyn would help SIBO symptoms. For example, this link.)

My experience with SIBO has been a wild ride and the symptoms have waxed and waned at times without any explanation, so it's difficult to know with certainty if the cromolyn was the reason for the improvement.  I also still experience some SIBO symptoms, but not as bad as in May.  Also, my dose of cromolyn is half of what other patients report taking.  I may need to increase the dose to further experiment—if insurance will cover it.

In the meantime, I've started the process of seeking insurance approval for intramuscular IgG, which should help with SIBO as well as continued positive IgM for Epstein Bar Virus and other issues. The insurance company (of course) rejected the first effort for approval.  They want me to undergo a further antibody production test which would involve receiving vaccinations for diphtheria and tetanus and then subsequently testing whether my body's antibody response is sufficient.  I have many reservations about this but I am considering it.

Edit: "H2 blocker" replaced with "H1 blocker."

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. 

My GI doctor's take on SIBO

I had an appointment with a gastrointestinal specialist (Dr. L) today to discuss the results of my recent positive SIBO breath test.  Mostly I was curious if the diagnosis of SIBO is taken seriously in "mainstream medicine" or if it's considered a sort of "fringe" diagnosis.  I also wanted to know how he would propose treating it, to get a second opinion.  (Dr. M. has suggested treating with the antibiotic Rifaximin.)

Dr. L said that he usually only discusses SIBO after he has ruled out all other potential causes of symptoms.  "SIBO comes last," he said.  He said that a few years ago, he used to be more interested in SIBO and would jump to a SIBO diagnosis more often, but he also said he considers it a bit of a "wastebasket diagnosis."  He explained that he used to treat SIBO with Rifaximin but he said that patients almost always came back in a few months when the SIBO had returned.  "...And I can't just keep prescribing you Rifaximin," he said.  Apparently, it was for this reason--futility--that Dr. L was less likely to jump to a SIBO diagnosis in recent years. He also suggested that the test results can be questionable.  Again, I wish I had asked more questions to clarify this, but I always seem to think of these questions when I'm driving away.

Dr. L said that when he does treat SIBO, he prefers probiotics (to "overwhelm the bad bacteria with the good bacteria") to antibiotics, although he is not adverse to trying antibiotics once.  Despite his reluctance to diagnose SIBO before other conditions have been ruled about, he did admit, without prompting by me, that my symptoms do seem consistent with SIBO.

In the end, he sent me away with some samples of VSL#3 and told me to try to treat if with probiotics, and if I still didn't feel better in a few weeks, I could call back. However, he said that if I call back, he would first have to rule out other possibilities by either doing a CT scan of the abdomen, and/or scopes, and/or stool sample testing.  (My feeling is these would probably not lead to anything useful.)  Previously he had ordered an abdominal ultrasound and some scopes and these were completely negative.

I have an appointment back with Dr. M (the doctor who originally diagnosed me with SIBO) on Monday.  I'm going to see if she can get me approved for one round of Rifaximin to see if it helps at all.  If not, I will try the probiotics/diet/herbal antibiotics route. 

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.

I have.... shingles

Over the past two days I've been writing about sensitive patches on my skin.  Up until last night, there was no visible rash.  Then last night a rash developed in two of the three areas where I suddenly have sensitive skin: my abdomen (right side) and lower back (right side.)  My right thigh remains free of visible marks, but still remains very sensitive to touch. In the meantime, another sensitive patch has developed under my right arm (triceps area), and another painful area (which feels more like a bruise, i.e. not on the surface) has developed under my right arm (lymph node?)

I was able to secure a last-minute doctor appointment this morning with my general practitioner, Dr. L.  She took one quick look at my rashes and said "Yep, it's shingles."  Shingles is when the chicken-pox virus (a/k/a varicella zoster virus [VZV], a/k/a human herpes virus 3 [HHV-3]) reactivates and infects the nerves—usually on one side of the body.  Apparently the painful rashes last for about 14 days. 

Dr. L said that after a person gets shingles once, it may become a recurring problem.  But if I recognize the symptoms sooner next time, and if I return to her immediately, she can prescribe drugs that will significantly shorten the duration of a shingles outbreak.  She prescribed Valacyclovir, 500 mg, 3x/day for 10 days.

I formerly took Valacyclovir for about 2 or 3 years to control re-activation of HHV-6 and other herpes family viruses due to a weak immune system, which can sometimes allow these old, dormant viruses to "re-activate" in ME patients—or so it is believed by some ME specialists.  This shingles outbreak is making me think I should possibly resume taking Valacyclovir on a long-term basis.

As a final comment, it was really nice to walk into a doctor's office and receive an immediate, concrete diagnosis, and a specific treatment plan.  I'd almost forgotten what that's like.  

Western Blot test says I have Lyme Disease. What?!

As I've written, I hired a new doctor about a year ago (Dr. M).  My goal was to start fresh and see if I could improve further with new theories of treatment.  My new doctor is, among other things, a so-called "lyme literate medical doctor" ("LLMD").

Ever since my second appointment, Dr. M has stated her belief that I may have chronic Lyme disease and its common co-infection of Babesiosis.  Babesiosis is another tick-born disease that is often transferred to the infected patient along with Lyme disease by the same tick bite.  The suspicion of Babesiosis was based on my shortness of breath and the periodicity of my symptoms.  Apparently Babesiosis symptoms come and go on a predicable schedule and Dr. M felt that my reported intervals of aggravated symptoms matched roughly with Babesiosis.

In 2011, when I first fell ill, I of course had a Lyme disease blood test through one of the large corporate blood labs.  I had the Western Blot test (which is considered by some to be superior to the ELISA test.)  The results were negative.

Since then, I've had many people advise me that I should be reevaluated for Lyme disease by an LLMD.  I nonetheless felt that Lyme was an unlikely explanation for my symptoms.  My prior doctor, Dr. W, told me he didn't think it was Lyme.  I never had any joint pain or arthritic symptoms, as are common with Lyme.  So I assigned Lyme a low priority on my mental list of possibilities to investigate.

After teaming with my new doctor, I was still reluctant to investigate Lyme.  Dr. M wanted me to take a test through the iGenix lab, which offers a version of the Western Blot Lyme test that is considered by many to be more accurate than the large national labs.  But there were two problems: (1) the Genix test is not covered by insurance and can cost about $900, and (2) the iGenix test is somewhat controversial, as some believe that it tends to over-diagnose people with Lyme disease.

I finally agreed to spend the money and take the iGenix test.  I truly believed there was a strong chance I would be the rare person to test unequivocally negative, even under the sensitive iGenix test.  This would, I hoped, put the Lyme issue behind me forever.

My doctor's office emailed me the results of the test on Wednesday night, ahead of my appointment.  The IgM antibodies for Lyme disease were positive.  The iGenix results show a diagnosis of Lyme under two standards:  iGenix's own standards, and under the standards promulgated by the national Centers for Disease Control (CDC).  If the iGenix standards are considered by some to be over-inclusive, the CDC standards are considered by many to be very under-inclusive.

My IgM antibodies showed positive for Lyme under both iGenix and CDC standards.  This captured my attention.

It should be 100% clear that I have Lyme diseases, right?  No.  Naturally, there's ambiguity.  My IgG antibodies were negative for Lyme disease under both standards.  IgM antibodies (positive) are indicative of a current, active infection, while IgG antibodies (negative) show past infection.  Dr. M's interpretation is that I still have an active Lyme infection and my body hasn't progressed to the stage of making IgG antibodies because the Lyme remains "active."

With respect to my doctor, I'm not certain that's how IgG antibodies work.  My understanding is that the immune system begins making IgG antibodies a few days to a few weeks after initial infection, even if the infection is still technically "active."  Unless I contracted Lyme on Monday (ha!), these results seem almost impossible.

The results of my Babesiosis test were equivocal.  Indeterminate.  Because of course they were!  It seems nothing is ever clear with chronic diseases.

I searched the Internet the night before my latest appointment with Dr. M to interpret these test results.  There were messages, blog posts, and articles by doctors and patients discussing my exact results.  While all of these sources indicated that I do have Lyme, many of them referenced (second-hand) that some doctors apparently interpreted IgM(+) and IgG(-) as a false positive result.  No such doctors could be found explaining their reasoning directly, rather there were vague, passing references to "some doctor's views."  I feel as if I'm only reading one side of the debate.

Still it is very hard to ignore the positive results under the strict CDC standards--right there in bold ink.  The words "CDC -- POSITIVE" practically demand my attention.  Plus, it seems as if most self-identifying Lyme patients who have been diagnosed through the iGenix test were not positive under the CDC standard.

I'll be honest: I am loathe to enter the Lyme "rabbit hole."  I've spent the last 4 and a half years researching and treating ME/CFS.  The Lyme community of patients always had a significant overlap with the ME/CFS community on message boards and blogs.  We were these two groups with seemingly about 95 to 100% overlap in symptoms and about 70% overlap in treatments.  Basically, we all speak the same language.  Yet in some ways the two communities seem worlds apart.  The Lyme community often appears closed and esoteric, and many Lyme patients disavow any connection with ME/CFS despite strong evidence that there's a similar chain of neuro-immune dysfunction in both diseases.  Nonetheless, both communities are bound by the connection that their diseases are understood by virtually nobody.  We've all been forced to adopt a sort of "us versus the world" defensiveness.

I've interacted with many Lyme patients on forums, many of whom are undergoing long-term antibiotic treatments.  Of those that I've personally interacted with, I can't think of any who have experienced any improvement on long-term antibiotics.  For that reason I'm reluctant to explore antibiotic treatment.  I recently read an article by the incomparable Cort Johnson that explained how some have been harmed by false Lyme diagnoses and unnecessary antibiotics.  I'm not shutting that door completely, but it would the last of last resorts for me -- pending more investigation.

In my mind there's about a 51% chance that Lyme is the cause of my problems.  But I suppose that I need to give Lyme treatments a chance.  How do I explain the positive CDC result?  Then again, how do I explain the prior negative Western Blot result, presumably under the same CDC standard?

Dr. M wants to treat it with a combination of Byron White formulas, "essential oils" treatment, and
Phosphatidylcholine.  I have to start researching these treatments.  The frustration is that it is difficult to find objective information on these treatments for Lyme.  Most of the information available is from Lyme patients who are taking these treatments, or "LLMD's" who prescribe them. Both groups are predisposed to believing their efficacy.

Rabbit hole, here I come...

Could autonomic neuropathy be part of the problem?

Today I want to share an email I received from a reader, reposted here with permission. This person was diagnosed with ME/CFS, and later apparently received a diagnosis of autonomic neuropathy (AN). I'm posting the email here in case others wish to look into neuropathy. I certainly plan to as soon as I am able.

Here is the relevant portion of the email:

"I read your blog and just wanted to give you a quick comment. Your SOB, numbness/tingling of your hands and feet could all be part of autonomic neuropathy, which also appears to be part of the symptoms for a subset of us with ME/CFS. 

I got the skin punch biopsy done to determine if indeed I was positive for small-fiber peripheral neuropathy. You have probably read about how more research is revealing that Fibro and ME/CFS patients are being diagnosed with SFPN. The test gets sent to Therapath labs. When I showed Dr. [C] the results, he commented "Well, congratulations, you now have a "real" diagnosis that Dr's will believe! 

I was able to get IVIG thru insurance for the neuropathy, however with all the weird things my body does....I had a strange inflammatory response (a long story for another time)! at a VERY low dose, so stopped that treatment. 

Anyway....if you research autonomic neuropathy, you will see one of the symptoms is Shortness of breath, along with the tingling/numbness in the hands and feet.
Just wanted to mention this, as I know how frustrating it is to have to go thru the "flow" chart with all these Dr's....and no real answers. This illness has so many strange symptoms that are tied into the central nervous system, systemic inflammatory processes, and possible nerve damage!... 

I hope you get back to your "regular" baseline soon. (by the way, don't know if you have ever tried guaifenesin (OTC)Mucinex D.....I take it to reduce post-nasal drip and "stuffy" sinuses plus the pseudoephedrine gives a little "energy" boost. Worth a try for SOB, as well as post-nasal drip, not only the decongestive properties, but also appears to have some anti-inflammatory properties."

I always appreciate when other patients reach out and share information like this, so I wanted to pass it along to others. I haven't had an opportunity to look into autonomic neuropathy yet, but the first thing I intend to learn is whether it is a disease in and of itself, or a "collection of symptoms" as some sources describe it. Based on my initial brief review of online information, it seems autonomic neuropathy may not be mutually exclusive with ME/CFS -- in other words, maybe ME/CFS can lead to AN.  Maybe the author of the email above can comment?

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

Part 1

                                                                             Part 2

New Round of Labs: Low Natural Killer Cell Activity

Low Natural Killer Cell Activity

I had my third appointment with Dr. W (ME specialist) today, and confirmed what we both already suspected: my natural killer cell (NKC) activity is low.  What surprised me was exactly how low.  Out of a reference range of 8-171, mine tested 8.

We all know that the medical community hasn't agreed on a set of biomarkers for ME/CFS, but most would probably agree that low NKC activity is one of, if not the, most common marker.  Most of us have it.

So I have mixed feelings about my particular result.  It was somewhat vindicating to confirm what I already knew--that I truly have ME/CFS.  But it's also scary to see such a clear deficiency in an critical bodily function.  Not only do NKCs keep viruses at bay, they help defeat cancerous cells--often killing cancerous growths without us ever knowing about it.  Now, apparently, I'm more susceptible to cancer.

But you can't live life in fear.  For as long as this NKC problem persists, I will simply make sure that I get regular cancer screenings.  That's all I can really do.

Starting an Anti-Viral Drug

At my last appointment, Dr. W and I discussed the possibility of using an anti-viral medication to control the reactivated Epstein-Barr and HHV-6 infections.  He mentioned that he normally prescribes either Valtrex or Acyclovir.  I spent the intervening months researching these two options.  As part of that research, I came to the conclusion that a third option, Famvir, was probably superior to these others.  While all three are effective against EBV, Famvir is supposed to have a broader spectrum and be more effective against HHV-6 and other herpes-family viruses.  Since my insurance covers all three medications, I came into today's appointment intent on coming away with a Famvir prescription.  

Dr. W was reluctant to prescribe Famvir, to say the least.  So this was the first time I gave him major push-back on one of his recommendations.  He ultimately agreed, but admitted that he had no idea what dose he should prescribe.  After the appointment, Dr. W researched dosage information and wrote the prescription for 500 mg/2x day. 

I also mentioned that many PWMEs report having success with a combination of an anti-viral and an immune modulator.  This seemed to perk up Dr. W, as if he'd been waiting to suggest it himself.  He wrote a prescription for low doses of something called "Naltrexone."  I've never heard of this drug, so I'll certainly spend a couple of weeks researching it before filling the prescription.

Candida Dies Hard

The biggest surprise was that my Candida titers had hardly dropped at all.  They are still alarmingly high.  This was after 2 weeks of Diflucan (I couldn't finish the full 4 weeks due to kidney pain), months of coconut oil,  months of Pau d'Arco tea, and an absolutely unwavering commitment to a strict Candida diet.  What do I have to do to kill these buggers?  

Since I apparently don't tolerate Diflucan very well, Dr. W prescribed the next best thing: Nystatin.  Nystatin is actually much less toxic than Diflucan and can be taken for longer periods of time, so I am hopeful it will be effective this time.  

The Good News

The good news was that some of my vitamin and hormone deficiencies have been corrected...at least partially.  My vitamin D3 levels are now optimal, and my thyroid levels are closer to optimal.  I rarely get cold hands and feet any longer, so I know that the thyroid supplementation must be working.

ME Testing/Treatment Roadmap

One of the posters on the Phoenix Rising (PR) forums recently referred me to this ME/CFS Testing and Treatment Roadmap.  It is an excellent guideline for beginners, and provides a clear step-by-step plan to getting the right diagnostics, and then guides you through treatments based on the test results.

I found this document particularly useful for resolving unanswered questions about the meaning of various IgG antibody levels.  I had read that high enough IgG levels can indicate, not just past infection, but a reactivated, current infection.  But I was never able to find the threshold IgG numbers that separate past infection from reactivated infection.  Now I have them.  

New Blood Tests Clarify My Diagnosis/Treatment Plan

About 2 weeks ago, I received a copy of my most recent blood work.  This was the blood panel that was ordered by my ME specialist and which finally tested for all of the ME "usual suspects," including hormonal and vitamin deficiencies.  Now I've had a chance to review those results with my doctor and create a revised treatment plan.

The good news was, I tested negative for some of the "usual suspects," like the CMV virus.  My adrenals are perfect, my insulin levels are nice and low, and hemoglobin was excellent.  So there's a few less things to worry about.

Now, here's what's ailing me (below), and what we're doing about it.  I've placed them in rough order of severity.  Keep in mind, the root cause of these systemic dysfunctions is the "blown fuse" in the hypothalamus, according to my doctor.  Since there's no way to directly reset the fuse, the best known treatments are to fix the resultant imbalances.

Viral and Mycoplasma Infections  I tested positive for IgG antibodies for both HHV-6 and Mycoplasma infections.  The Mycoplasma numbers were particularly high (3.08, when normal is below 1.10).   Previous tests also showed positive IgG for Epstein Barr Virus.  IgG antibodies are typically deemed only to be evidence of past infection.  However, the conventional thinking among ME experts is that, when the immune system is weakened as it is in ME patients, these viruses reactivate.  There is no way to test for reactivation, although Dr. Tietelbaum's book cites to several clinical studies that he says prove this point.

Dr. W offered to prescribe Valtrex, which he said can be effective against all of these infections, but I delayed that decision for now for a couple of reasons.  For one, Dr. Teitelbaum's book says that HHV-6 is resistant to Valtrex, and that Valtrex is not effective in treating ME.  My doctor obviously disagrees with this.  I'm keeping it in mind as a possibility for later.

Candida Albicans.  This is the intestinal yeast overgrowth that I mentioned in yesterday's post.  I tested positive for all three types of antibodies: IgG, IgA, and IgM.  Whereas the normal range is less than 1.0, my antibody levels were 1.3, 3.7, and 1.4 respectively.  The treatment is to continue with a low carb/no sugar diet, and take 1 month's worth of prescription Diflucan to reign in the infection.

Unfortunately, once you have Candida infection in the intestines, you are always very susceptible to it returning.  (One source I read said that the Candida grows roots in the lining of your intestines, so even if you kill the yeast, the roots lay dormant, ready to regrow the yeast if you feed them with sugar! Yikes!) So even after we get it under control, I will not be able to drink alcohol or eat sugary foods again without reactivating it.  But, if I get my health back, I'll count myself lucky.

Vitamin D3 deficiency  The lab's quoted "normal range" is 30-100 ng/mL.  (I discussed the controversy and problems with "normal ranges" in an earlier post).  Mine was 40 ng/mL.  My doctor said a healthy level for someone my age should be in the 60-100 range.  I had been taking 3-4,000 IU's of D3 supplements per day, and noticing an improvement in my shortness of breath.  Dr. W upped the dosage to 8-10,000. We'll test the levels again in two months.

Dr. W was emphatic that raising my Vitamin D levels is a critical component to recovery.  He says raising my D3 to optimum levels will jump start my immune system and raise my energy level significantly.

Pregnenolone  Pregnenolone is another hormone that is critical for energy and memory.  My levels were  extremely low: 23 out of a listed range of 13-208.  Dr. W wants to bring me up to around 130, so he prescribed 100mg/day of a Pregnenolone/DHEA supplement.

Thyroid.  We had already determined that my thyroid levels were low from my past visit to Dr. W.  The Thyroflex test measured the levels in my tissues, which were low.  Plus, my hands and feet and been icicles ever since I got sick.  These blood tests confirmed low-ish T3 levels, and high Reverse T3 levels.  Dr. W prescribed me T3 supplementation, starting with 10 mcg/day, and escalating to 25 after 10 days.

Testosterone.  I was a little surprised to learn that he thought my Testosterone levels are low.  But I'm so manly, I thought.  But apparently this hormone is responsible for a lot more than libido and muscle strength: things like brain function, energy level, and heart function.  Dr. W perscribed a cream that I am supposed to rub on my skin once a day and it absorbs topically.

Natural Killer Cells  Finally, Dr. W had ordered a test of my Natural Killer Cell (NKC) activity.  NKC's are a type of white blood cells that are critical for immune function, and are usually found to be low in people with ME.  Unfortunately, the lab performed the wrong kind of NKC test and Dr. W was unable to interpret the results.  We will redo the test correctly in two months.

But for now, the plan is to add these treatments to the supplements I was already taking and see if I can manage some improvement.  I've already improved somewhat from the existing regimen plus diet changes.  I remain slightly skeptical that all of the above is necessary, but if/when I improve, I can experiment with removing some of these treatments one by one to determine what I truly need.

My Doctor's Diagnosis and Treatment Plan

I posted the following on a CFS message board the day I was diagnosed.  Rather than type it all out again, here it is, with a few minor edits:

I was diagnosed with ME today, almost 6 months to the day after first becoming sick. My symptoms are too many to list, but the main ones are: extreme fatigue, shortness of breath, chronic sore throat, and intermittent insomnia. Approximately 1 month ago, after having visited 9 doctors for my wide-ranging symptoms, I finally self-diagnosed ME. We had ruled out everything else under the sun. That self-diagnosis led me to find a doctor’s practice group that specializes in ME. I found them using this CFS doctor database: http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-doctors/ Today was my first appointment. Sure enough, the doctor (I'll call him Dr. W) diagnosed me with CFS without reservation (I prefer the "ME" designation, and use it synonymous here). The appointment lasted nearly 2 hours, and I learned much in that time. I want to share some of that information in case it helps others get a diagnosis or treatment. Please read the following with your own appropriate level of skepticism. This is only one doctor’s opinion. Note: If you’ve already read Dr. Teitelbaum’s book FFTF, much of this is review. BUT, I found it interesting to note where my doctor disagreed or altered the recommendations of Dr. Teitelbaum. What exactly is ME and what causes it? You can drive yourself crazy wading through all of the conflicting information about ME in the internet and in books. It seems there are 4 or 5 common theories: (1) It’s a chronic viral infection, usually involving EBV, (2) an immune system defect, (3) a defective hypothalamus, (4) a hormonal imbalance (HPA axis), or (5) mitochondrial dysfunction. I wanted to know if there is a unified theory that ties all of this together. The doctor said, yes: It is believed that ME is usually triggered by either a virus or a hormonal imbalance, which causes the hypothalamus to become defective. The hypothalamus controls your immune system, hormone levels, and mitochondrial function. After your hypothalamus stops working properly, your immune system is compromised, and you become more prone to other infections (both viral and bacterial, especially candida). So, infections can be both a cause and a symptom. Same with hormonal imbalances. The hypothalamus is the lynchpin in the middle of all this. Prognosis: The good news is that “most” people (according to Dr. W), with proper treatment, are able to manage their symptoms and live a more-or-less normal life. [3/28/2012 edit: Wow, this seems WAY off the mark!].   The goal with treatment is to force the ME into remission. Sadly, there is no cure at this time. But, indefinite remission is possible. Everyone responds differently to treatment. Promising research is being done with stem cells, so it’s possible we may see a cure in the future. Diagnosis: For me, the doctor diagnosed CFS in several ways. First, he looked at the ½” stack of blood work printouts that I have collected over the last 6 months. He noted that thyroid levels, while technically “in range,” were at the far low end of the range. I had brought this to the attention of previous physicians, but they dismissed it as irrelevant. (This problem of erroneous “normal ranges” is echoed in Dr. Teitelbaum’s book.) The doctor then confirmed the low thyroid levels through a “Thyroflex test.” This is a reflex test that measures the level of thyroid hormone in your tissues, which is better than a blood test. This test involves placing sensors on your hand while tapping your elbow. The sensors are then read by a computer. This test confirmed low thyroid levels. I also have very cold hands and feet, which is another indicator of hypothyroidism. Second, ME was diagnosed by simply looking into my mouth. Candida overgrowth was apparent by a white film on my tongue. Candida apparently often follows after someone develops ME, due to the weakened immune system. Third, my blood tests showed high levels of EBV antibodies. And fourth, I meet the general CDC guidelines for CFS diagnosis, and my past blood tests had already ruled out everything else that could cause my symptoms. XMRV: I asked if the XMRV theory of ME was considered dead. Based on what I have read recently, I thought the research community had debunked that theory. He said no, it remains an open question, but there isn’t any point in testing for it. It is an expensive test and there is nothing they can do about it if you test positive. Lyme: He said he treats many Lyme patients and my symptoms are not consistent with Lyme. I previously had the Western Blot test for Lyme, which was negative. (While the Western Blot is better than the old ELISA test, it is still severely flawed. According to Dr. W, there is a brand new test for Lyme that is expensive, but worth it if you have the symptoms). Recommended Treatment. Diet: As of two weeks ago, I had already changed by diet to a low-carb, low-sugar diet. I did this after reading the book “Recovery from CFS: 50 personal stories.” The book is exactly what the title suggests: 50 short stories from people who claim to have recovered from ME. [Edit: I have some major criticisms of this book, but they don't detract from my point here]. I read the book specifically to see what remedies were mentioned most frequently. The most common recommendations were variations on low-carb, low-sugar diets. No less than 5 of the authors recommended a book called: “Life Without Bread.” So I read that book too. I found the evidence in “Life Without Bread” to be very convincing. Dr. W emphatically agreed with this. While a low-carb diet isn’t a cure-all, it seems to be a key piece of the puzzle. Hormomes: There is no doubt that Dr. W will be giving me hormone treatments. But the types and amounts will depend the results of a new set of blood tests. Supplements: I know many here are jaded by the endless recommendations of supplements. Dr. W emphasized that I need to not give up too early, and stick with this full regimen for at least 4 to 6 months. The full regimen is: 1. A multivitamin powder, 2. Acetyl-L-carnitine 3. Coenzyme Q 4. Vitamin D3 5. D-Ribose 6. Immune system support. They have their own proprietary brand called ImmuneStim 7. Pro-biotic, to balance intestinal bacteria and get rid of candida. 8. And melatonin for better sleep. Needless to say, I will be a pill popping machine for at least the next 4-6 months. Exercise: Dr. W said I should not try to exercise until “we get things under control.” I don't think I could anyway. Final Thoughts: I don’t know if this will work, but I do believe that the key to sending ME into remission is “getting all of the puzzle pieces into place at the same time,” and then sticking with it long enough to recover.

With that, I've completed the portion of this blog where I catch up on past history.  All posts from now on will focus on the present and future.  

From Onset to Diagnosis – 6 Months (Cont.)

(Continued from post below)


Fourth Month
By month four, I had all but given up on the doctors in my local practice group.  They'd been given their chance to get it right--to diagnosis me correctly--and they failed.  At about this time, a family friend recommended a hospital in Santa Barbara (the Sansum Clinic) that, supposedly, specialized in hard-to-diagnose cases.  After discussing the costs with my wife, we decided to visit the clinic.  At that time, we didn't have a "plan B," so this was my best and only option.

I took a few days off from work and we made a small vacation out of it.  This would be our first road-trip with our daughter, and the trip luckily coincided with one of my better weeks.  Even now, the trip remains one of the few good memories from that pre-diagnosis period.

At Sansum I met with two doctors, a GP and a rheumatologist.  Ultimately, neither were able to diagnose me, but they were able to explain, clearly and understandably, why many of my concerns (auto immune disorder, Gilbert's syndrome, cancer, and others) were "ruled out."  In the end, this freed me up to continue my search for a diagnosis in other, new directions.

The other positive aspect of this trip was that the Sansum doctors were the first to consider M.E. as a realistic explanation of my symptoms.  They freely admitted that their knowledge on the subject was limited, but the GP explained that ME is not yet fully understood and that research is ongoing.  He also cited a couple of promising recent studies.  This would become important later.

Back home, I visited another rheumatologist in my home town.  This appointment had already been scheduled before the Santa Barbara trip and so, I figured 'why not?'  I didn't have any better ideas.  This doctor, ordered tests for stool samples to rule out celiac's disease and gastrointestinal parasites.  Both were negative.  I had struck out again.

Fifth month

Out of other ideas, I decided to stop looking for a doctors who could explain all of my symptoms, and simply find someone who could treat each one individually.  At the same time, I held out hope that one of these specialists would discover something that would explain all of the other symptoms.  And so I met with an Ear, Nose and Throat specialist (ENT) about my sore throats, and a pulmonologist, about my shortness of breath.

The ENT was useless.  Enough said.  The pulmonologist, at least, had some interesting theories.  He ruled out Valley Fever through blood tests, and ordered an exercise test that would evaluate my entire cardiovascular system while I rode a stationary bicycle.  In the end, I passed this test in the upper range of the expected.  And while the test caused me to "crash" the following day, at least I learned how far I can push my physical endurance.  As long as I am willing to put up with the subsequent crash (which lasted a week this time), it's nice to know that I can do it if I need to.

Around the beginning of this month, I also began to keep a daily health log, to see if I could determine what caused me to continually improve and then regress.  I gave myself a grade for my overall health each day, along with recording my daily diet, activities, weight, blood pressure, temperature, amount of sleep, nausea, and fatigue. (I still do this.)

Sixth month
By this time, I had a stack of lab results and medical technician reports almost a half inch thick...and nothing to show for it.  And so, I started researching M.E. because, well, we'd ruled out everything else.  I hit the blogs, message boards and books.  I read a book by a self-styled M.E. "specialist," Dr. Teitelbaum [edit: who I would later discover is not held in high regard] and soon knew without much doubt that I had M.E.  It was a huge relief to finally read accounts from people who's experiences matched mine so closely.  Above all, reading about the cyclical nature of M.E.'s symptoms was a bit of an epiphany.  Few other illnesses follow this mercurial pattern.

In the next several weeks, I researched treatment options and, eventually, found a local doctors' practice group that specializes in M.E.  I made an appointment.  By the end of the month, I finally had a diagnosis.

The diagnosis came with mixed feelings.  Gone was any possibility that this was all some big misunderstanding--that there was a simple diagnosis, and simple cure, that we had all overlooked.  But at least I could finally move on to the next phase...treatment.

(More on my doctor's diagnosis in the next post...)

From Onset to Diagnosis – 6 Months

First Month – Confused But Not Worried

If I would have known that June 4, 2011 was the last day I would feel well, possibly ever, I would have spent it doing something other than installing an attic ladder. But, sadly, that's the last thing I did as a fully healthy person. I got sick that night with what felt like the worst flu I'd ever had. I call it "the worst" because it came with seemingly every symptom associated with flu, all at once. Fever, nausea, headache, sore throat, swollen glands…basically all 15 of the symptoms listed on my "Symptoms" post.

When I didn't improve after a week, I visited my family doctor (GP), who prescribed antibiotics (Cipro). In the meantime, my standard CBC blood panel came back negative. What a relief, I thought, I'll be back at work in a few days. But the Cipro didn't help. I returned to work anyway, and my coworkers remarked how pale and sickly I appeared.  I felt dizzy every time I stood up.

After another course of antibiotics failed to cure me, my doctor referred me to an infectious disease specialist, Dr. S.A. Doctor S.A. ran her own set of blood tests, checking for a handful of scary viruses, including HIV! Again, nothing. On my return visit, she said I probably had "an unidentified virus." "There are hundreds of viruses that can make you feel this way, and we can't test for them all," she said. "But, usually it clears up in about a month. Six weeks, max."

Second Month – False Relief

More or less as Dr. S.A. predicted, I started to feel better after 5 weeks. It was just a really nasty bug, I thought, but it's behind me now. Only, it didn't go away completely. I improved to about 95%, but still my body was telling me, "don't go back to your workouts yet." I was functional again, but I could sense that there was something still lurking. I figured that my body simply needed a little extra time killing off the last hold-out colonies of that nasty virus.

Then, after three weeks of life at 95%, it all came back. I woke up one morning and, all my symptoms were back. It was like someone had reset the clock to June 5^th again.

I returned to Dr. S.A., who promptly dismissed her former "virus theory." "A virus doesn't behave this way," she explained. "Once your body kills the virus, it's gone. It doesn't come back."

"What is it then?" I asked.

"I don't know," she said. "Let's run some more blood tests."

The blood tests, of course, all came back with what Dr. S.A. said were 'normal' results.

Third Month – Panic

The third month began with a couple of trips to a new specialist, a urologist. One of my symptoms was (and still is) this strange discomfort in the area of my kidneys. It's not pain exactly, but an internal swelling. The urologist ordered a CT scan of my abdomen, but everything appeared normal. "Check back with your GP," he said.  In the meantime, I also visted an Immunologist, who tested for Lyme Disease and prophyrria.  Negative.

My GP literally threw her hands in the air. She didn't know what to do with me. Her only other idea was to run another CBC panel, "just to see if the last one missed anything."

Around this time, I decided that 'my doctors are clueless,' and 'I need to take matters into my own hands.' So I began Googling my symptoms. This is one of the worst things you can do. Little did I know at the time, but Google has a tendency to list "Cancer" at or near the top of just about any search result involving medical symptoms. This misunderstanding is not Goolge's fault, really. It's a by-product of Google's algorithm. We've all come to trust Google implicitly, because it's usually so accurate at predicting the correct answers to our questions. But we forget that Google isn't in the business of giving us the "right" answer. It's in the business of serving up the links we are most likely to click. When people search complex sets of symptoms, they want to rule out cancer first. So, over time, "cancer" links rise to the top of medical search results.

So, I became, if not convinced, then at least suspicious, that I had "the big C," specifically, lymphoma. Other factors contributed to this misunderstanding. For one, the only other condition that consistently showed up on my Google searches of my symptoms was ME/CFS/CFIDS.  But every time I asked one of my doctors about it, they'd brush it aside with a dismissive gesture.

Another factor was that my GP didn't flinch when I asked for a referral to an oncologist. On some level, I was hoping she'd laugh in my face when I asked for it. "Cancer," she'd say, laughing. "Get out of here. You're letting your imagination get the better of you." Instead, she deadpanned, "well, I hope it's not that," and handed me a referral.

At times, I became so convinced that I had cancer, I moved beyond the question of "if" and began planning as if I'd already been diagnosed. I found myself researching treatment options. I considered videotaping a few words of advice to my infant daughter, in the event that I died. I'm embarrassed to admit this now. It seems a little hysterical. But there was a certain logic behind it. I mean, the oncologist didn't exactly balk when I explained my symptoms.  He had to wait for his own set of blood tests before ruling in out.  And even then, he said, "you can never 'rule out' cancer."

But alas, after two more trips to the oncologist, more blood work, and another CT scan, I was finally convinced that I didn't have cancer.

Now, whenever I start feeling depressed about ME, I think back to when I thought I had cancer.

(To be continued…)