Closing out 2016

I'll do a more complete personal update after January 1st when I calculate my daily health averages for 2016 and compare it to past years.

In the meantime, after taking most of 2016 off, I'm back on Equilibrant and ImmunoStim (both are over the counter immune modulators) and I continue to believe they are helpful.  Now, unlike before however, I am pulsing the doses with 5 days on, 2 days off.  Dr. C once suggested that some patients have better success when pulsing so that the body doesn't become too accustomed to immune modulators.
                                                                    _________

I have a firm belief that Th1/Th2 imbalance is a key part of my immune dysfunction; specifically I'm Th2 dominant.  It's beyond the scope of this post to explain exactly why I've come to this conclusion - it would take a 5,000 word essay - but suffice it to say, I am confident of this.  I do understand that many believe the Th1/Th2 model of the immune system is oversimplified, but at the same time, it can still be specific and valid enough to provide treatment guidance.  (If it's good enough for Dr. C and other well respected ME researchers, it's good enough for me.)

For a long time, I have wondered what would happen if I concentrated on an entire protocol of Th1 shifting diet and supplements.  But I was unaware of any existing protocol and didn't have the time to research and invent one myself.  Then I found this protocol from Self Hacked.

Some of Self Hacked's advice on Th1/Th2 seems to be contradictory, so each step of implementing this will require my own confirmatory internet research.  Often times, a single study can be worthless.  I'd like to focus on diet and supplements that have a well-supported history of being found to be Th1 stimulants or Th2 suppressors; not just a single study.

Astralagus is already in Equilibrant, so for now I'm also introducing licourice and gynostemma, as well as new probiotics that focus on certain strains.  Its too early to tell if this will help.  I will update later...

                                                                 _________

I also received an interesting comment from an anonymous reader to my last post from late November.  The gist of it was that the commenter had success by focusing on treating autonomic dysfunction and suggested I do the same. Others have suggested that to me, but what I found particularly interesting was the statement that  Dr. Nancy Klimas has apparently stated that she believes autonomic dysfucntion is the key to ME (or words to that effect).  I was unaware of that, as I've been a little out of the loop lately.  I'll be looking more into Klimas' comments about autonomic dysfunction.  I'd love to hear others' take on this.

Latest Doctor Appointment

Last week I visited one of my doctors, Dr. M., who specializes primarily in Lyme disease but also treats other hard-to-treat conditions such as ME.  Our focus for this appointment was treating my hypothyroid symptoms.  We started by reviewing my recent laboratory blood test results testing thyroid hormone levels.  My levels of T3 (the active thyroid hormone) were optimal, while my levels of T4 and TSH (essentially, precursors to T3) were low, out of range.  Dr. M seemed concerned about this and wants to try to bringing my T4 levels within range as well.

I asked why it was necessary to bring T4 into range when T3 (the actual, active thyroid hormone) is optional.  My understanding is that, under normal circumstances, when one is not taking thyroid medication, the body produces TSH, which stimulates the production of T4, which in turn stimulates the production of T3.  (This is a bit oversimplified, as discussed below.)  So I wondered if T3 is optimal through medication, why do we need to bother with the precursors.  Why not "cut out the middle man"?

Dr. M asked me if I was still experiencing hypothyroid symptoms.  I admitted that I did still experience at least one symptom: extremely cold hands and feet.  Not just a little bit cold, but almost shockingly, painfully cold sometimes.  I had never considered this before.  Why, if my T3 levels are optimal, do I still have such cold hands and feet.

Dr. M explained that patients will still experience hypothyroid symptoms unless T4 is also brought into a normal range.  She referred me to a book called: Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian.  How's that for a specific title?  I'm not sure if I'm going to read the book, but regardless we are lowering my T3 dose and increasing my T4 to see if we can find a better balance that reduces symptoms.

                                                                 _________________

Based on recent emergence and prevalence of histamine-related symptoms, we're beginning to suspect that mast cell activation may be present.  Dr. M states there is a test for mast cell activation, and we agreed that I should submit to this test relatively soon.  I plan to undergo a mast cell activation test in the next 3 or 4 months.  If the test is positive, it will be a significant clue to determining which subset of ME patients I fall into.

                                                               __________________

Finally, Dr. M suggested I consider an emerging treatment for chronic infections called Low Dose immunotherapy, as pioneered by a Dr. Ty Vincent.  This is apparently a somewhat novel approach and I'm not inclined to play the role of Guinea pig at this time.  I will probably not try this treatment.

Personal Update

I had a birthday this past month.  The big Four-Oh.  Nobody is ever happy about turning 40 and I am no exception.  Officially now, half of my thirties were lived with ME.  But I think about ME less than I did in my first three years of diagnosis.  It is simply part of life now.  

Starting around the beginning of 2016, I believe, I began to ween myself off of the supplement Equilibrant.  (Equilibrant is an immune-modulating supplement that I have written about on this blog--recommended by one of my ME doctors.)  For about 4+ years, I had taken Equilibrant at the full dosage of 6 tablets per day.  During that time, I saw my condition stabilize and I experienced fewer and shorter "crashes."

Equilibrant is expensive and I wasn't sure if continuing to take it was necessary to maintain my level of functionality.  So by about mid-Summer, I had reduced intake all the way down to nothing.  I was completely off of Equilibrant.  And for the first month or two, I didn't notice any change in my health.  

But then my monthly health rating averages fell significantly.  I also developed shingles during that time--possibly related to stopping taking Equilibrant.  Over the same period of time, I also stopped taking daily vitamin B complex tablets.  My energy waned.  

In late September I decided to resume Equilibrant and B complex.  October has been by far my best health month of 2016.  I feel fairly certain that those supplements are helping and that I should continue to take them indefinitely, with occasional breaks or "holidays."  

I also found that my sleep was worse during the time when I was not taking vitamin B complex.  It occurred to me then that many patients say vitamin B12, which is part of the B complex, helps with sleep.  My sleep did improve after resuming B complex.  

So here I am again, stuck in a "holding pattern," very thankful that my case of ME has remained moderate compared to many patients, but also not as hopeful as I once was that I might recover without a breakthrough in ME treatment options.  

Beware of Supplements that May Cause Kidney Inflammation or Damages

Since I first developed ME in 2011, one of my on-again-off-again symptoms has been an aching in the area of the kidneys.  Two separate nephrologists (kidney doctors) tested my kidney function and told me it was normal and that I did not have any kidney stones, and yet these aches would persist.  In recent years, the pain has been mostly absent, but would come back 4 or 5 times per year.  

In the past three weeks, the pain has been back again.  It usually comes with strong, persistent thirst. I wondered if there are any supplements that could help reduce this inflammation.  In the process of searching for supplements that would help, I came across this list of 17 drugs and supplements that, according to the American Society of Nephrology, have been associated with kidney inflammation. One of them, to my surprise, was L-Lysine, which I have been taking at a "maintenance dose" ever since my outbreak of the shingles.

It's probably important for anyone who takes supplements to check this list and make sure they are not potentially damaging their kidneys.  

Antivirals May Treat M.E., But For Different Reasons Than We Thought

If you haven't already, check out this article from the Open Medicine Foundation (OMF).  It starts with a general overview of theories of the role of viruses in ME and various approaches to treating the viral component of ME.  But it's conclusion is perhaps the most interesting.  The article concludes that using antiviral treatments for ME may help improve symptoms in patients, but not because antivirals actually decrease viral titers, but because they improve metabolic function.  Again, this seems unproven and possibly speculative at this point, but it does seem to reconcile the puzzling results of some studies on the use of antivirals in ME treatment.

http://www.openmedicinefoundation.org/2016/09/09/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/

Shingles Update, part II - The Conclusion

WebMD, or one of those medical websites (I forget which one exactly) stated singles usually lasts 3-5 weeks.  My shingles pain lasted just about exactly five weeks.  Granted, it's impossible to pinpoint the day it fully resolved because it faded slowly.  But by about the end of the 5th week, I could no longer detect any pain.

It's not surprising that it lasted the full 5 weeks.  On one hand, I did most things right to treat it.  I took a week's worth of Valtrex (starting about 5 days after the symptoms began - not ideal - but still helpful) and at least 1500 mg, and sometimes 3000mg, of L-Lysine for most of the 5 weeks. On the other hand, my immune system is a joke. So five weeks seems about right.

Unfortunately, there is still visible evidence of the shingles rash.  It's not noticeable from a distance, but up close, you can see pinpoint spots that look like age spots, i.e. no pigmentation.

Frankly, if only the pinpoint age spots remain, I will still consider myself lucky.  When I read that, for some people, the pain of singles never goes away, and nobody knows why, I became slightly worried that this could happen to me.  With all my neuro-immune deficiencies, it wouldn't be surprising if my case of shingles was more complicated than a typical case.  Alas, I avoided that nightmare.
                                                                   _______________

My doctor (Dr. M) says she recommends, for people with herpes family virus infections, L-Lysine at 1500 mg per day just for maintenance, and doubling that dosage to (1 gram, 3x per day) when there is an active infection. I am considering continuing with the L-Lysine as at the maintenance dose.  I first have to research long-term safety of L-Lysine.
                                                                   ________________

If I ever needed further confirmation that my case of ME involves neurological inflammation (I didn't), this bout with singles proved it.  My doctor said that the shingles virus lives and reactivates on nerves attached to the spine--essentially the virus attacks nerves.  Over the last 5 weeks with shingles, whenever I had a general increase in inflammation--a worsening of my ME symptoms--the shingles would get significantly worse too.  The pattern was clear.  This reinforced what I already knew, that "crashes" are, at least in part, increases in neurological inflammation.

Shingles update

I've now had shingles for 16 days (if you count from the first day the pain started, even though there was no visible rash until 3 days later.)  After the visible rash appeared, prompting me to see my doctor for a diagnosis, and to begin taking Valacylovir (500mg 3x/day for 7 days) and L-Lysine, the rash continued to worsen for another 3 or 4 days.  The rash grew from initial spotty patches on the right side of my abdomen until it eventually formed a more-or-less complete band stretching from my navel around the right side of my torso, to my spine.

I would have never thought it possible that the mere touch of clothing to the skin could be painful, but that's exactly what happened.  Even the gentle touch of cotton shirts has become fairly painful. On the other hand, the pain isn't so excruciating that I can't focus on other things if needed.  Most of the time, I can ignore the pain and focus on other tasks.  But when my mind is unoccupied, and especially when I'm walking around (thus creating more friction between my shirt and my abdomen) the pain becomes fairly intense.

As of today, the rash is slowly disappearing but the pain continues to wax an wane.  It is the "waxing" part that concerns me slightly.  The pain had been trending less severe along with the fading rash until yesterday, when it started to become more painful again.  Today again, the pain is as intense as it ever was.  So I will continue to evaluate my options and perhaps seek more Valacylovir from my doctor.

Why did this happen?  Other than the obvious--that I have a weakened immune system due to ME—this happened because I "pushed" myself too hard.

I felt the first symptoms on a Sunday.  The prior Thursday, I'd experienced a very poor night of sleep. I was already in the midst of period of increased stress in my life.  [Trigger warning for severe ME patients]  Then I did a stupid thing: I went to a concert on Friday night, as if I was a normal, healthy person.  I even drank a beer.  Then, after the concert, I had another poor night of sleep because of the stimulation of the concert, its late ending, and the alcohol.  Then, the next day, apparently having completely lost my mind, I attempted to go to a museum with some friends.  This was far more than my ME-depleted system could handle. By Sunday I knew I had overdone it and there would be a severe price to pay.  I felt like hell.

I was correct that there was going to be a price to pay, but I couldn't have predicted that it would take the form of shingles.  But sure enough, that Sunday is when I felt the first strange symptoms as I noticed that my clothing hurt.

Lesson learned...

For anyone interested in further reading, here are two articles regarding possible connections between ME and the VZV virus (the shingles / chicken pox virus.)

http://phoenixrising.me/archives/5806

http://sacfs.asn.au/news/2014/06/06_03_link_between_shingles_and_cfs.htm

Final note:  Is it me, or is shingles a particularly nasty word?  It evokes all sorts of disgusting images in my head.  It's as if roofing tiles are going to grow out of my skin.  (*shudders*)  Ew.  

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.  

I'm pretty sure I have allodynia due to autonomic nervous system dysfunction

After my post yesterday about skin sensitivity, a reader emailed comments and a link to a 2013 article from Health Rising about allodynia (a type of nerve pain) in ME and fibromyalgia.  I feel a little embarrassed for not knowing that allodynia is a common symptom in ME and fibro, but I have a tendency to gloss over articles and posts about symptoms I'm not currently dealing with—it's the only way for me to reduce the ocean of ME information into something digestible.

According to the article, by Tim Vaughan:

Reduced blood and oxygen flows to the muscles in ME/CFS/FM could set the stage for allodynia and other pain problems...   

“Ischemia” [inadequate blood flow to a part of the body]...[is] where the capillary walls become clogged with platelets and white blood cells, thus blocking oxygen from reaching the muscle. Now the muscle has to deal with lack of oxygen and the inflammation cascade from reperfusion [the action of restoring the flow of blood to an organ or tissue. ...[T]his sets up a great environment for the generation of pain.

I had a eureka moment when reading this article.  In conjunction with my recent doctors appointments, and recent musing on my shortness of breath (and related symptoms), I had already started to reach the conclusion that my shortness of breath, light headedness, and tingling in extremities must be from lack of blood flow to capillaries and tissue.  The one thing that kept me from realizing that blood/oxygen was the problem for so long was that my pulse oximeter always shows normal blood oxygen levels.  But then in my last doctor appointment (3 weeks ago), Dr. M stated that the pulse oxymeter wouldn't detect oxygen levels in the capillaries, and certainly not in muscle tissue. This never occurred to me.  It should have!..but it didn't.

So recently I've been musing about what to do with this new information, still not totally certain that it was a capillary and tissue problem.  Then the allodynia arose.  Then I read this article (linked above) and I suddenly feel certain that I'm dealing with lack of blood flow to capillaries and tissue...probably due to autonomic nervous system dysfunction.

Now the question is, what do I do with this information?  I haven't figured that out yet...

Suddenly, I have skin sensitivity

I have no idea if this is related to ME, but for the last 3 days, I have suddenly developed skin sensitivity in three areas on my body: the right side of my stomach, the right side of my lower back (directly opposite the patch on the stomach), and an area on the back of my right thigh.  There are no visible scratches, rashes, or bumps.  In terms of the pain sensation, it feels like those areas have been scratched by sandpaper, and now they are sensitive even to the contact of clothing over them.  I applied a topical over-the-counter steroid this morning, but it hasn't seemed to help.

I can't recall ever reading that sensitive skin was a major symptom of ME, but then again, I've probably read and forgotten an encyclopedia's worth of information on ME in the last 5 years.  A very brief Google search revealed that these types of non-visible skin irritations occur for all sorts of reasons: an irritant, such as new soap, new laundry detergent, contact with chemicals, airborne pollutants, or simply stress.

None of these factors seem to fit.  I did switch to a new brand of soap about three weeks ago, so it's possible the soap had a delayed effect.  More likely, I think I probably overdid the activity this weekend and my body is reacting with increased cortisol and, thus, stress.  I hope this doesn't become a regular part of my entomology.  

Have You Seen This Table of Recent ME Research Findings?

I don't know what saintly person created this table of recent ME research findings, but I wish I could thank him or her.  I'm always looking for ways to simplify and makes sense of the vast amount of information that comes at us in the ME community.  Recently, I have felt less motivated to keep up with all of the research findings because it all starts to seem like disconnected noise after a while; none of it leading to any real-world solutions for us.  Charts like this are helpful to see the "big picture."

https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view?pref=2&pli=1

Article: biomarker for ME might be found in the gut biome

This article from Cornell Chronicle summarizes recent findings published in the journal, Microbiome, reporting that researchers could predict whether a person has ME based on the diversity of their microbiome, using stool samples.

"The researchers sequenced regions of microbial DNA from the stool samples to identify different types of bacteria. Overall, the diversity of types of bacteria was greatly reduced and there were fewer bacterial species known to be anti-inflammatory in ME/CFS patients compared with healthy people, an observation also seen in people with Crohn’s disease and ulcerative colitis. 

At the same time, the researchers discovered specific markers of inflammation in the blood, likely due to a leaky gut from intestinal problems that allow bacteria to enter the blood, Giloteaux said. Bacteria in the blood will trigger an immune response, which could worsen symptoms."

These might not be the most revolutionary findings, especially regarding the lack of diversity in gut bacteria (first quoted paragraph above), but I had never heard that it was, specifically, bacteria, that leaks into the bloodstream in leaky gut syndrome (second quoted paragraph).  The leaked substance has usually been described more generally as "particles" or "toxins" leaking into the bloodstream, not necessarily bacteria.  Could this be a significant finding?

Still, the articles doesn't address some obvious questions.  What is the connection between the lack of diversity in the gut biome and the leaky gut condition which allows some of those non-diverse bacteria to enter the bloodstream?  And what are the "specific markers of inflammation in the blood" the article references? Unfortunately, we would have to access the original publication in Microbiome to find out.  

5 Year Anniversary

Yesterday was my five year anniversary of having ME/CFS.  As almost every patient says on their anniversary: that happened fast!  At the same time, sometimes it almost feels like it is hard to remember a time when I didn't have to manage this illness.

I'm basically at the same place I was last year at the 4 year mark:  I have improved somewhat, stabilized really, since first getting ME/CFS, but any hope of recovering based on current treatment options is mostly gone.  If it was going to happen, it would have happened already.  So the treatments I'm trying these days are more geared toward managing the illness and hopefully preventing it from getting worse -- a main focus here is preventing the gradual buildup of toxins and oxidation in a body whose detoxification mechanism is broken.  My doctor believes this kind of build-up can hit a critical mass and cause irreversible crashes.

I continue to be hopeful that medical advances will lead to significantly better treatments and possibly even a cure in my lifetime.

I'm Done with Equilibrant

After four years, I'm done with Equilibrant.  (Equilibrant is an over-the-counter immune modulating supplement recommended by one of my doctors, Dr. C.)  Apparently, I don't need it anymore.  I began taking Equilibrant in April, 2012.  Almost immediately, it became clear that the Equilibrant was helping modulate crashes.  The peaks and valleys were less severe and less frequent (especially the valleys.)  So I stayed on Equilibrant at the full recommended dosage of 6 tablets per day for 4 years.

Recently, in my ongoing efforts to find answers to my shortness of breath (SOB) problems, I decided to take an extended holiday from Equilibrant.  In my desperation to find something, anything that helped, I thought there was a possibility, however slight, that Equilibrant was now leading to an autoimmune response that was responsible for the SOB.  So I just quit.  I didn't even reduce the dosage slowly.  One day I just stopped.

It's been about a month or more since I quit Equilibrant and, so far, I still feel fine.  There's been no improvement in my SOB, but that's a topic for another post.  It's possible that I could see the return of the extreme "roller coaster" crash cycle sometime in the future.  For now it seems Equilibrant was the right supplement for me at the right time, but that time has passed.  I seem to have stabilized since I first began taking Equilibrant, so perhaps I simply don't need it anymore.  I'm always happy to give up a supplement, especially one as expensive as Equilibrant, if I don't need it anymore.

At the same time, I've also gone off of a supplement called Immuno-Stim, which was also a collection of immune modulating compounds, which had some over lap in ingredients with Equilibrant.  So far, so good...

Sun and natural vitamin D definitely helps

Lately, I've been making a conscious effort to get more sun (safely, of course, with sunscreen.)  Most people in the ME/CFS community are familiar with the various studies about the links between Vitamin D and sun exposure - studies showing that certain neuro-immune conditions are far more prevalent in higher latitudes, where sun exposure is less.  I won't repeat that literature here.

I've noticed that when I spend at least an hour during a given day with a signifiant amount of skin exposed to natural sunlight, I feel better in the evening and the next day.  I sleep better too.  Much better.  Before I fall asleep, the feeling is of an increase in physical strength. I suddenly feel stronger and more virile.

Since very early after my diagnosis of ME/CFS, I have taken supplements of Vitamin D3.  I've had multiple doctors express to me how critical it is for ME/CFS patients to have Vitamin D3 levels in the normal to upper-normal range.  Under doctor's orders, I have supplemented with anywhere from 5,000 IUs to, at times, as much as 10,000 IUs of vitamin D3 per day.  This has ensured that my vitamin D3 levels on blood tests have maintained in the range of what my doctors say is "optimal."  It's difficult to say if these optimal levels contributed to the steady improvement I experienced from 2011 through 2015.

But I do know that supplemental Vitamin D definitely does not feel the same as the benefits I get from natural sunlight.  I don't know if sunlight benefits me in some way besides Vitamin D (I can't imagine what that could be) or if the natural production of Vitamin D somehow trumps the supplemented version.

When we supplement Vitamin D orally, it must absorb from the stomach through the liver.  By contrast, when we make Vitamin D through sun exposure, some of the vitamin forms on the surface of the skin and then absorbs through the skin.  According to one of my doctors, it can take 24-48 hours for this Vitamin D to absorb, thus his recommendation that I not shower until at least 24 hours after a good sun exposure. (This is very difficult for me to do given the combination of sweat and sunscreen on my skin, but I have been trying to do it.)

The bottom line is, it is unmistakable that I feel better when I've gotten exposure to natural sunlight.  Like everything I've found that helps, it's not a cure-all, but it's one small thing I can do to better manage this illness.

My Latest Doctor's Appointment - Trying New Treatments

I had another appointment with my integrative medicine doctor yesterday, Dr. M.  Since my last post in March, the shortness of breath (SOB) and post nasal drip (PND), which I thought had finally gone away, came back.  But in the meantime, some very interesting clues arose suggesting a possible cause of this frustrating set of symptoms.

In early March, I became sick with a very bad cold, the main symptom of which was a hacking cough.  I coughed so hard I strained the ligaments in my ribs, making further coughing painful. During the 10 day span that I had the cough, I didn't have any SOB or PND.  (That's when I wrote my last blog post.)  A couple of days after the cough resolved, the SOB and PND returned.  Then, because of my weak immune system, the cough returned for another week, and the SOB/PND went away.  Then this cycle repeated a third time!  It was almost the perfect cause/effect experiment.

That brings us to present day.  I stopped coughing again about 3 days ago, and the SOB/PND returned again yesterday (the day of my appointment with Dr. M.)

But there's more...

I noticed that, very often, when I do something that should be good for my immune system, the SOB/PND becomes triggered.  For instance, nearly every time I take a zinc lozenge (but not always), the SOB/PND becomes worse immediately.  The connection with zinc is unmistakable.
Also, about once every two weeks, I am suddenly and for no discernible reason, able to catch an extra good night of sleep.  I will sleep maybe 9 or 10 hours and wake up knowing, feeling, that it was an extra deep sleep.  It's a hard feeling to describe, but it's unmistakable when it happens.  The strange thing is, these nights of "power sleep" are always followed by a bad day of SOB/PND.  This seems very counter-intuitive because sleep is supposed to be good for the immune system.

All of this leads me to believe that the SOB/PND is some sort of over activation of the immune system — an allergic or autoimmune-type response.  It's as if my immune system almost has to be stressed a bit in order to avoid SOB/PND, or in the case of my recent cold, to be "distracted" by something else.

When I explained this theory to Dr. M, she neither supported it nor rejected it.  She was simply pensive, and acknowledged the possibility that there could be something accurate in my theory (or perhaps she didn't want to hurt my feelings.)

As I've written before, Dr. M believes, foremost, that I have chronic Lyme disease and chronic babesia.  I've discussed my skepticism of this diagnosis with her and she understands.  At the same time, I can't completely rule out her diagnosis.

One of the hallmarks of babesia infection is cyclical SOB, like I have.  Dr. M has previously raised the possibility of me taking an anti-babesia medication called Mepron, but I have always demurred.  This time, after researching Mepron and understanding more about its side affects (mild) and risks (minor), I agreed to try it for 1-2 months to see if it will help decrease the SOB/PND.  So that is the current plan.  I will fill the prescription this weekend.
                                                                        _____________

We are also in the process of decreasing my daily T3 thyroid dose.  My previous doctor had increased the dose so high (75mcg) that my body nearly ceased all natural production of Thyroid Stimulating Hormone (TSH) and T4 (thyroid hormone precursor).  Dr. M wants to decrease T3 to the point where TSH and T4 begin production again.  We've already decreased T3 from 75 to 40 mcg. and I still feel fine.

Dr. M also wants me to increase my infrared sauna usage from 1-2x to 3-4x/week for detoxification.  (ME/CFS patients are thought to have broken or defective detoxification pathways.)  Although I once used my sauna almost daily for an 8 month period, right now I simply don't feel like I have the patience to increase my usage back to 3-4x per week.  I will try nonetheless.  She also stressed the importance of continuing to take Phosphatidyl Choline, which I will.

Personal Update: Symptoms come and go without explanation

Since September, 2015, I have dealt with severe shortness of breath (SOB) and post-nasal drip (PND), which always waxed and waned in unison.  The two symptoms were clearly tied together somehow.  From September through January, the symptoms gradually grew worse and more frequent, to the point where they became constant companions.  By January, the symptoms were present every day.  The only variable was the severity.

I did everything I could to make sense of the symptoms.  I meticulously charted my activities, food, supplements, and other inputs, trying to isolate a variable as the cause of the SOB/PND.  I visited 4 or 5 doctors.  In the end, I found nothing.  It was frustrating.

Then in late February, they simply went away.  They're not completely gone form my life--I still get them occasionally.  But now instead of every day, I get them maybe once every 5 or 6 days.  And when I do get them, they seem less severe.

Once again, ME/CFS has proven maddeningly difficult to explain.  I have only two theories:  (1) The symptoms were yet another example of inflammatory cytokines attacking one area of the body for a while before moving on to another.  This seems to happened constantly in my experience with ME/CFS.  Or, (2) I picked up a viral respiratory infection in September 2015 that my weakened immune system took 7 months to clear.  I think the first explanation is more likely because the second doesn't explain the periodicity (waxing and waning) of the symptoms.

Now it seems the inflammation may be moving back to my nervous system.  I'm beginning to have "neuro symptoms" again--lack of coordination in the extremities along with brain fog.
                                                               _________________

I had the flu last week.  It had been going around my family for two weeks and it finally hit me.  I went to the doctor within 13 hours of the first symptoms and obtained a prescription of Tamiflu.  Then I took to the ME/CFS message boards to learn if there was any reason I shouldn't try Tamiflu.  There were some hints of possibilities of complications with ME/CFS and Tamiflu, but nothing concrete enough to dissuade me.

In the end, I think the Tamiflu helped.  Other, more healthy people, were incapacitated for a week or more with this flu.   I was done with the flu symptoms by day 3 or 4, although the flu did somehow evolve into or pave the way for a bacterial respiratory infection (like it did for 3 of my family members too.)  It was a strange bug.

So again I ended up taking antibiotics (Amoxicillin).  It seems just about the longest period I have been able to do without a serious bacterial infection requiring antibiotics, since 2011, is about 1 year.  I cannot seem to break that one year barrier.  I would very much like to avoid antibiotics but, when you need them, you need them.

My changing prognosis

This summer will be my fifth year anniversary with ME/CFS. Up until recently, I have maintained the attitude that there was a slight chance I might recover on my own. I had read stories about people who recovered, especially within the first three or four years. There was even a small place in the back of my mind that hoped my case of ME/CFS was really just an extended case of post viral syndrome. I could see from statistics I found online, and from interacting with other patients, that this hope was thin. But it was easy to maintain that hope as I was gradually improving, albeit at a glacial pace.

As I have written recently, my health with ME/CFS seems to have peaked in March, 2015. Since then, I have been sliding backwards. I think and hope that I may have found the bottom of this backsliding, but that is still an open question.

Sometime in the last 6 to 8 months, my attitude evolved. I stopped hoping that my illness might all be temporary. I don't mean this to sound glum. There is, of course, always some hope. But now my view is that the peak I experienced in March, 2015, may represent my realistic ceiling. I will of course keep looking for answers, trying various treatments, and reading about the latest research. I still have a tremendous amount of hope that research will lead to more effective treatments. I feel it's healthy to occasionally reassess where I am on my journey with ME/CFS and adjust expectations accordingly. 

A Moment of Truth with My Doctor

I had my latest appointment with one of my doctors today, Dr. M.  She is my "second-string" ME/CFS doctor, but I need her for all the treatments Dr. C doesn't meddle with.

We Disagree About Whether I Have Lyme Disease

In past posts, I wrote that Dr. M believes, with "100% certainty" that I have Lyme disease.  This is based on her clinical diagnosis, an equivocal Stony Brook Western Blot test, and an IGenex Western Blot test that was positive IgM, negative IgG.  To be honest, her "100%" pronouncement was a bit of a red flag for me, as I don't think a responsible doctor should opine 100% certainty about any diagnosis, let alone something as complicated and controversial as chronic Lyme.  But on the other hand, I very much need a doctor to fill Dr. M's role, and I feel she is probably my best option right now.  I am reluctant try to find another local doctor who specialized in complex neruo-immune illnesses.

After first receiving the IGenex results, I thought I probably did have Lyme. But after reading more about Lyme and consulting other patients and doctors, I came to the belief that I probably do not have Lyme.  In my mind now, there is about a 10-20% chance I have Lyme.  Thus, I have a fundamental disagreement with my treating doctor...which can be a problem.  And so I went into this appointment intent on having a straight-talk conversation with Dr. M to determine if we should continue working together.

I explained my skepticism of the Lyme diagnosis as diplomatically as I could, trying not to make it sound as if I don't trust her experience or judgment.  Then I noted that the two main treatments she wanted me to try for Lyme would theoretically help regardless of which neuro-immune disease I have.  She has me taking Byron White's AL Complex, which is labelled first and foremost as "immune support," not necessarily a Lyme treatment.  The other treatment is Lauricidin / Monolaurin, which is supposed to be a powerful anti-bacterial, anti-viral, and anti-fungal.  So, in theory, these two treatments would help regardless of whether I have Lyme, ME/CFS, or both.  Plus, since I think there's still a small chance I might have Lyme, I want to hedge by incorporating at least one Lyme treatment into my plan, especially if that treatment helps with other conditions as well.

So I asked Dr. M, does it matter if we don't agree on exactly which disease within the neruo-immune family of diseases I have?  I said that in my estimation, it seems that about 80% of treatments overlap between Lyme and ME/CFS.  Could we simply focus on treatments that work for both?  She agreed that we could (maybe she simply wants to keep my business) and so it was settled.  

Phosphatidylcholine

I then told Dr. M about my experiment with Phosphatidylcholine (PC), a treatment she had recommended. To summarize my experience with PC: it started a major detoxification event from which I still haven't quite recovered.  I was effected badly by Herxheimer or detox symptoms: achy kidneys, crippling brain fog, muscle twitches, unquenchable thirst, urine that was a strange shade of yellow (almost brownish-yellow), and increased fatigue/inflammation.  

Dr. M echoed what I had already been thinking: that this reaction was actually a good sign. If we interpreted these symptoms correctly as the result of detoxification, then my body needs this detoxification.  I simply need to titrate more slowly.  (Dr. M pointed out that her instruction sheet from my last appointment clearly advised me to titrate slowly, which I completely overlooked.) So I'm going to try PC again, this time using the capsule form (as opposed to liquid form) so that I can more easily control the dose.  18 capsules apparently equals one tablespoon of liquid PC, so now I can start with 1/18th of the prior dose.  

Dr. M explained again that PC repairs and cleans cell walls throughout the body, which is consistent with what I had independently read. These built-up toxins (and oxidative stress?) then become merely waste in the body, existing intracellularly (between cells).  Releasing too much of this waste at once can make a person feel very badly.  I believe that's exactly what happened when I went directly to a high dose of PC; the symptoms fit.  

Hormones

I continue to believe that bringing the hormones back into something that resembles a "normal balance" is one important key (among many) to regaining health.  That's something that every ME/CFS doctor I've met with besides Dr. C has advised (Dr. C. has a laser focus on enteroviruses and related treatments, to the exclusion of most everything else).   

We also agreed that the dose of active Thyroid hormone (T3) my previous doctor had me taking was too high (75 mcg/day).  We want to go back down to 50 or less.  This has to be done very slowly and carefully because the body needs time to adjust and start increasing its own production of the thyroid hormone precursor, T4.  As a first step, we're only reducing it by 10 mcg.

We're also going to put me back on testosterone cream instead of the self injections.  The injections were causing me groin pain and I had to quit.  Prior to quitting, testosterone was helping substantially.  Thus, we want to add it back in, but less aggressively, and using a dosing method (cream) that doesn't lead to such extreme spikes of testosterone levels in the blood. 

So now we have a new plan... 

What Must Happen Next to Solve ME/CFS

We Need Multiple Breakthroughs Before "the Big Picture" Emerges 

The next big breakthrough in ME/CFS research...will be the first.

As sobering as that is, in 30 or 40 years of ME/CFS research, we can't point to a single discovery that truly qualifies as a "breakthrough."  I'm referring to a breakthrough on the order of the XMRV discovery.... if it had turned out to be correct.  We can't claim anything so important.  Not one.  And yet in order to truly "solve" ME/CFS, we might need dozens of such breakthroughs.

When I read accounts of the latest IACFS conference*, or the daily articles that make the rounds in our blogosphere, I have mixed feelings.  A few dozen dedicated researchers are all working on their pet theories and all seemingly churning out important findings.  It all sounds positive...we are surely making "progress."

But it raises a question: Is one of the researchers correct, and the others wrong?  Almost certainly not. There are too many confirmed physiological derangements found in ME/CFS patients that are, by now, beyond debate.  In the immune system alone, there is a constellation of problems, and that's merely one sector of the disease.  We know with absolute certainty we're dealing with a complex multi-system disorder. And so each of these dedicated ME/CFS researchers is probably focusing on what will turn out to be but a small piece of the puzzle.

When a true breakthrough finally occurs, it will look like one of two things:  Ideally someone will suddenly discover the cause--the one event that sets off the long chain of subsequent derangements.  Then we'd have a true focus for treatment research.

But barring such a "home run" discovery, true breakthroughs will begin to occur when someone with a mind toward the big picture starts making connections between the various derangements.... and proving them.  Someone has to start linking these findings in a causal chain so that we can begin to create a comprehensive model of this incredibly complex disease.

Look at the list of derangements involved with ME/CFS below and realize that nobody has yet to conclusively link even two of them together in a causal relationship.  And yet, in order to truly understand ME/CFS, we might need to figure out how they all connect:

1.  Glutathione deficiencies, methylation defects, detox mechanisms
2.  Mitochondrial dysfunction
3.  Neurological symptoms
4.  POTS/OI/tachychardia
5.  Hormone imbalances
6.  Th1/Th2 imbalance
7.  Natural Killer Cell deficiencies
8.  Pro-inflammatory cytokines
9.  Unhealthy gut biome
10.  High viral titers
11.  Cognitive dysfunction
12.  Sleep disturbances
And many more...

A note on terminology.  The list above includes symptoms, imbalances, deficiencies, dysfunctions, and pathogenic markers.  Collectively I refer to them as "derangements."

In addition to linking all these derangements together, a unified model has to explain how we can have multiple routes into ME/CFS:  gradual onset versus sudden onset; viral infection, major bodily injury, etc.  Perhaps this is the test by which all theories of ME/CFS etiology should be judged.  Does the theory explain why we have multiple routes into the same state of disease?  If it doesn't, at best, the theory only explains part of the puzzle, further downstream from the cause.

This is why I believe the theories of so many of our dedicated ME/CFS researchers will be, even if proven to be true, only part of the puzzle.  Many of the theories probably aren't broad enough to explain both sudden onset and gradual onset.  Moreover, many of the current working theories would explain only part of the disease process further downstream, not the etiological origin.

                                                            Possible Models of ME/CFS

When we are finally able to link all of the states of dysfunction together through causal connections, the model that emerges will probably look like one of the following 3 examples:

Linear chain:  Imagine all 12 of the derangements listed above tied together in a simple cause-and-effect chain, from 1 to 12.  This is the most simplistic model, and probably very unlikely to describe ME/CFS.

Hub and spokes:  This is a wheel analogy.  First, you have an axle (the original cause).  Next, the "hub" connected to the axle is a single, master derangement--one that leads to all the others.  Every other derangement stems directly from the hub but is not linked to any of the others.

A-shape waterfall:  This is a hybrid of the two models above.  The brink (the tipping point of the waterfall) is the etiologic cause of ME/CFS.  Perhaps you have a single stream leading up to the brink, but perhaps you have many tributaries (different causes) all leading up to one brink.  As the water falls over the brink (the person becomes ill), the stream becomes divided, and then further subdivided, and so forth.  A similar analogy would be the branches of a tree dividing and subdividing from the thick trunk all the way to the thinnest branches.  

I believe, almost certainly, the model will end up looking like the waterfall example above.  It is the only model that explains the variations in symptoms from one ME/CFS patient to another.  The farther the water drops from the brink, the more likely it is that rocks on the cliff (small variations in patients' body chemistries, from one person to the next) will send each molecule of water in a different direction from the one next to it.  At the top of the waterfall, the path of each patient's disease development probably looks the same, but it starts looking more and more different as we get away from the brink.

One of the implications of the waterfall model would be that the more common the derangement, the closer it would be to the brink.  If there's a derangement that nearly all patients have, that derangement, logically, would be more directly connected to the etiologic origin of ME/CFS (i.e. closer to the brink).  Less common derangements would be further down the waterfall.  This somewhat logical conclusion might provide a basis by which we might begin to construct a complete model.

The Pessimistic View

Each of the divisions in the waterfall model represents a connection that needs to be hypothesized, tested, peer-reviewed, confirmed, and ultimately accepted by consensus before we truly understand the disease process.  There are dozens of these connections that need to be made in this fashion, and we've yet to do even one.  Arguably, only when we finish this process and have a complete model of ME/CFS can we really hope to focus our search for a cure.  The treatment research should focus on putting a damn at the brink, before the water goes over the waterfall.  But if we don't know what the brink is, how can we expect to damn it.

In 30+ years of ME/CFS research, they haven't made even one conclusive causal connection.  In fact, all we're doing is finding more and more pieces that need to be connected together to explain everything.  The big picture often seems to be getting more complex, less clear.  At this rate, it's hard to image ME/CFS ever being fully understood in any of our lifetimes, let alone an approved curative treatment found.  

Further, it is notoriously difficult for scientists to reach a consensus and accept a theory as fact, even with the simplest of theories.  When we're talking about a multifactorial disease that looks something like the waterfall model, it can seem impossible that the proof would ever be strong enough for biologists and doctors to accept any one model.  Even if a model this complex could be somehow "proven," it's such a complex model, the medical community as a whole might never fully understand it.  Doctors and medical schools are accustomed to learning/teaching simple one or two step disease processes.    

                                                               The Optimistic View

Looking at the history of Epidemiology, many diseases have been solved before they were ever fully understood.  Often a drug is discovered by chance, perhaps from research into an unrelated illness, and suddenly there is a cure when nobody was expecting it.  Then it becomes quite easy for researchers to find the cause of the disease because they can simply study why the drug is effective and work backwards.  But at that point, it's all academic anyway.  Who cares exactly why it works?  By the time they've worked it out, we'd be sipping margaritas on a beach in Belize.  

Momentum can build very quickly when just one breakthrough finding is made.  Again, looking at the history of Epidemiology with respect to other diseases, often when one key connection is made, others follow rapidly afterwards.  Imagine what would have happened had XMRV been confirmed.  With a concrete, headline-making finding, research money would have poured in.  Drug companies would have been racing to beat each other to the marketplace with an XMRV anti-viral.  Our small circle of ME/CFS researchers would have likely expanded greatly as virologist and epidemiologists all over the world would have turned their attention to ME/CFS.  Progress would have accelerated exponentially. 

At any moment, we're just one breakthrough away from a rapid acceleration of progress.  The catch is, the breakthrough (whatever it is) has to be sufficiently high up on the waterfall to explain all or most of the disease process.  

Current Treatment Implications

As I look around at how different patients and doctors approach ME/CFS treatment, I see huge variations. There are those that use zero or one or two treatments, and those that take a shotgun approach with 30+ supplements and medications.  Both are valid.

Some patients find that they simply cannot tolerate most treatments.  Others report that most treatments they've tried had no noticeable affect.  Financial affordability is often a limitation too, as are risks and side effects.   

On the other hand, some patients adopt the philosophy that substantial improvements can be cobbled together with many small, sometimes imperceptible improvements, and that each treatment must be provided time to heal slowly.

I think it's safe to say that there is no single existing treatment that can build a damn at the brink of the waterfall.  If such a treatment existed, someone would have stumbled on it by now.  For that reason, my current treatment philosophy is to try to implement at least one treatment for each derangement -- even if that means sometimes merely treating the symptoms.  Since we have no idea which derangements are downstream from others, it arguably makes sense to address a little of everything.

Having said that, I'm still at a place on my disease timeline where I can tolerate most treatments that I try.  That may change.  My hope is that I can stay tolerant of these treatments long enough for a breakthrough to occur of the kind described in the Optimistic View section above (the accidental breakthrough.)  Because if we have to rely on piecing together a full model of ME/CFS before solving it, I fear the disease will far outlive me.

*I originally wrote this post after the March, 2014 IACFS/ME Conference and, for some reason, never posted it.  I found it this week sitting in my blog as a draft and decided to click "Publish." Some of the references therefore might be slightly outdated.

Check Out and [Maybe] Edit ME-pedia.org

Apparently ME/CFS has it's own wiki.  I recently found out about ME-pedia.org when a friend emailed the link.  This page shows its organizers and founders.  

I'm excited about this.  ME-pedia has the potential to revolutionize how the patient community builds its knowledge base.  One of the best ways to ensure progress is for patients to share their experiences and build collective knowledge bases.  We can't simply rely on a handful of scientists to solve everything (although I'm still holding out hope for that!)  Up until now, the process of patient-to-patient knowledge sharing has mainly played out in the message boards.  I love the message boards, but they aren't the most efficient way to collectivize knowledge.

Say you want to understand a given treatment.  First you might search the Internet generally for an article or a research paper on the topic. Those are rare and can be difficult to find.  If you can't find any articles, maybe you go to the message boards where there's often dozens of threads on a given treatment.  Within each thread, there are various digressions and irrelevant information.  Nobody is verifying that statements are supported with citations.  It's all up to the reader to divine the useful information from the "noise" and decide whether that information is supported by facts or is merely opinion.

ME-pedia has the potential to make this collective knowledge sharing process much more effective and efficient.  I assume it will work like Wikipedia, where editors check to ensure that users' edits and additions are supported by citations and are generally written in an objective, encyclopedic style. If so, this could turn into an invaluable resource.  It's already shaping up that way.

I just wish ME-pedia had been around when I first received my diagnosis.

Candida Tongue and ME/CFS

When I was diagnosed with ME/CFS in 2011, one of the first things the doctor told me was that the white film on my tongue was called "Candida" and that it was a sign of a weakened immune system.  Ever since that day, I've tried to determine if that doctor was correct.  Is the white film really a sort of barometer for how the immune system is functioning?  Here's what I've learned.

My Past History with "Candida Tongue"

I became ill with ME/CFS in the Summer of 2011, but I know I've had a white film on my tongue since at least 15 years earlier.  When I was in college, a girlfriend once mentioned the white film on my tongue and told me it was a sign I needed to brush my tongue harder.  I looked in the mirror, and it was the first time I ever recall noticing the whiteness.  If it had noticed before, I assumed it was normal.  The film was mostly confined to the back half of my tongue, exactly as it is today.  

My girlfriend's tongue was, by contrast, perfectly pinkish-red.  Not a hint of white film could be seen.  For the next few months, I brushed my tongue after every teeth washing.  It never made any difference.  I came to the conclusion that I could brush my tongue until it bled and it still wouldn't remove that film.  My girlfriend was clearly wrong about the brushing.  She simply had a pinker tongue I decided.

_______________

In 2005 (6 years before ME/CFS), I experienced a year of unexplained health problems.  Although I didn't know it at the time, it was a bit of a preview of ME/CFS.  I contracted Epstein Bar Virus (I have positive IgM blood tests from that time), I had kidney aches, and serious GI distress among other things.  All would return in 2011, along with many more.  

The GI distress eventually led me to a gastroenterologist who "scoped" my stomach via endoscopy. He found no ulcers, but he did find "candida plaques."  According to my medical records from that time (which I retrieved later after my CFS diagnosis), the doctor prescribed me 2 weeks of Diflucan.

It is said that everyone, including healthy people, has Candida yeast growing inside them, so my assumption is that what the gastroenterologist saw was more than the usual amount.  Although the "scope" report doesn't actually say Candida "overgrowth," it's doubtful the gastroenterologist would have prescribed Diflucan if he'd seen merely a normal amount.     

                                                                   _______________

These incidents from my pre-ME/CFS past suggested two possibilities:  Either (1) the white film on my tongue is not unusual and not indicative of weak immune system, or (2) I've had a weak immune system since well before ME/CFS.  In this latter scenario, perhaps a weak immune system made me pre-disposed to ME/CFS; in effect, I was perhaps a "ticking time bomb" waiting for my viral and/or toxin load to reach a critical mass.  

So which one is it?

Test Results

When I eventually received my CFS diagnosis, one of the first blood panels showed that my candida antibodies were very high.  Using a reference range of <1.0, my results were:

IgG  1.3

IgA  3.7

IgM 1.4

They were all high, but the IgA results particularly were off the proverbial charts.  Subsequent courses of oral Nystatin brought the numbers down slightly, but IgA never fell below 2.4.  (I didn't tolerate Diflucan well this time--it made my kidneys ache.)

On the other hand, dozens of non-CFS doctors and dentists have looked in my mouth over the years and none have said anything about an excess amount of Candida.  That tells me, if the Candida levels in my mouth are excessive, it is not shockingly obvious.  

                                                             My Amateur "Investigations"

After the blood test results, I began to wonder about Candida overgrowth and, for a period of time in my first year with ME/CFS, I naively thought that treating it might be a key to recovery. (How little I knew.)  I read The Yeast Syndrome, by John Trowbridge and Morton Walker.  I changed my diet, first to an anti-Candida diet for about 90 days, and then to a Paleo diet for "maintenance."  

All the while, the white film on my tongue remained mostly unchanged, although for brief periods of time while on Nystatin, the film was slightly reduced.  Even when I wasn't taking Nystatin, every once in a while the film would nearly disappear for a day or two, for no apparent reason, only to return.  It's truly bizarre how it can come and go, and yet, when it's there, it feels so utterly permanent--incapable of being brushed away.  How can that be explained?  

Then, as the years passed, I began occasionally asking friends and family to show me their tongues..."for science!"  They all had some degree of white film, although none quite as thick as mine.  (I never again saw a perfectly clear tongue like that of the old college girlfriend, and so I realized that either (1) she must have had an abnormally strong immune system, or (2) she was a space alien.)  

So I knew that measuring the strength of someone's immune system wasn't as simple as looking inside someone's mouth to see if they had a white film.  Nearly everyone has it to some extent.  Yet I also knew that the white film had at least some correlation to the health of one's immune system.  How?  Search Google Images for "oral thrush" (a severe form of candida overgrowth in the mouths of people with very severe immune deficiencies, such as those with HIV or certain cancer treatments.) But for godssakes, don't look if you are squeamish or eating.  (Click here if brave or crazy)

Now that we know what a severely immune deficient person's tongue looks like, it's logical to conclude that lesser degrees of immune deficiency would result in a lesser degrees of white film on the tongue.  But where is the line between a healthy amount of Candida on the tongue and Candida overgrowth?  Excluding cases of severe oral thrush, can one determine how healthy someone is by looking in their mouth?  Could ME/CFS patients possibly use it as a barometer to track the effectiveness of treatments?  Having compared my tongue to the tongue of healthy friends and family, I believe the answer is this:

My Conclusions

There's no criteria to determine when a normal amount of Candida on the tongue crosses over into Candida "overgrowth."  As far as I know, it's a judgment call by doctors.  They just "know it when they see it," and probably 10 different doctors would have 10 different opinions.

But I've noticed that while a healthy person's tongue often has some degree of white film, it is spotty and thin, covering 10 to 60% of the back half of the tongue.  When most of the back half of the tongue and even some of the front half of the tongue are covered with white film, the person may be immune deficient.  Obviously I'm not a doctor, but that's what I've observed.  

Where Did It Go?  

Now get this: In the last three weeks when I look in the mirror, the white film has been gone.  No trace of it.  My tongue looks as pink and clean as that old college girlfriend's.  Cleaner than those of my friends and family.  It is utterly confounding.  As far as I know, this is the first time since at least 1998 that I've had a consistently Candida-free tongue.  Nothing, not even Nystatin or Diflucan has been able to achieve this before.

I wish I could pinpoint exactly what made the Candida go away, but I'm not one of those people who possesses the discipline to implement only one treatment at a time.  About  4 to 6 weeks ago, I began adding a number of supplements to my routine in rapid succession.  Since most of the supplements I added were repetitions of past treatments, I can narrow the likely cause to supplements that are new.  

The new supplements I added are Oregano Oil (181 mg./day), Monolaurin /Lauricidin (only 3 to 8 pellets per day), and then there was a one week experiment with Phosphatidylcholine.  I also stopped taking D-Ribose, which is a type of sugar and may or may not feed Candida (this is debated).  I've also picked up the habit of just eating a spoonful of extra virgin coconut oil occasionally.  Coconut oil  is an anti fungal.  

My guess is that it is was a combination of the Oregano Oil, Monolaurin and Coconut Oil, both of which have anti-yeast properties. 

It's still too early to tell if this glorious Candida-free state will last, or if it will help in my overall battle with ME/CFS.  So far I don't feel any different.  But damn it feels good to look in the mirror and see a clear tongue.  To quote Jason Mraz in his song I'm Yours:

"I've been spending way too long checking my tongue in the mirror

And bending over backwards just to try to see it clearer"

Book Review: Why Can't I Get Better?, by Dr. Richard Horowitz

[Note:  This review can also be found on my Book Review Page.]

Why Can't I Get Better? by Richard Horowitz

Before I get into the details of this book, I want to mention that this review is written from the perspective of an ME/CFS patient reading a book that is primarily about chronic Lyme disease. The book overall has excellent reviews on Amazon  and it actually reached the New York Times Best Sellers list, which is remarkable for a specialty health book.  Clearly, Dr. Horowitz did something right here.  

I read this book for two reasons.  I had recently received a questionable Lyme disease diagnosis, and I wanted to read a book about Lyme to see if it would help me decide whether I truly have Lyme or, if not, what else I could do to shed more light on this murky topic.  The second reason was that ME/CFS and Lyme seem to have a large amount of overlap in symptoms, test abnormalities, and treatments.  A Lyme book could be valuable reading for an ME/CFS patient.  

At times I found this book to be a bona fide page turner; I was learning new things on nearly every page. Mind you, if you've been an ME/CFS patient for any period of time, you probably won't learn anything new on a "macro level"—that is, you won't discover any new concepts or treatments.  But the book offers a deeper understanding of many of these old concepts, like mitochondrial dysfunction, the HPA axis, immune dysfunction and others.  Dr. Horowitz views Lyme, ME/CFS, Fibromyalgia, autoimmune diseases, and other neuro-immune illnesses as being part of a spectrum he terms MSIDS (more on that later...), so it's relevant regardless of which neuro-immune disease one might have.

Usually when I read a health book, I'm constantly assessing how I might rate the book.  For over 400 pages, I had this book pegged as a solid 4 stars, despite its flaws.  Then on page 437 I came across this (in Chapter 19, called "Lyme and Exercise"):

"Patients with Lyme disease, fibromyalgia, and chronic fatigue syndrome (myalgic enchephalomyelitis) find their fatigue and pain syndromes improve with increased exercise, independently of other changes in their medical regimens."

Uh oh!  It gets worse. Later, he says:

"Aerobic exercise has been shown to be effective in reducing fatigue among adults with chronic autoimmune conditions, as well as those with depression, cancer, multiple sclerosis, and chronic fatigue syndrome."

Later he recommends "a graded exercise program."  In the span of two pages, the book went from a 4 to a 1 star.  I was left wondering, how could someone who purports to be an expert on, among other things, ME/CFS be unaware of all of the studies showing that exercise makes ME/CFS patients worse—that it is, in fact, dangerous?  The book has a copyright date of 2013; two years before the Institute of Medicine (IOM), in conjunction with the National Institute of Health issued its report which attempted to rename the disease SEID, or systemic exertion intolerance disease. One wonders if Dr. Horowitz took note of the IOM report when it was published and if future editions of the book might contain a revised Chapter 19.

But let's not allow the review of a 532 page book to be about 3 sentences.  Although I probably risk being ostracized from the ME/CFS community for saying this, the rest of the book does have some value.

The Good.  To build on something I said above, Horowitz does an excellent job of taking the reader on a wide ranging, comprehensive tour of the various systemic failures and corresponding treatment options for patients with chronic neuro-immune diseases.  A brief scan of the chapter headings for chapters 5 through 18 gives an idea of the breadth of this book:  Immune Dysfunction, Inflammation, Environmental Toxins, Functional Medicine and Nutritional Therapies, Mitochondrial Dysfunction, Hormones, the Brain, Sleep Disorders, Autonomic Nervous System Dysfunction/POTS, Allergies, Gastrointestinal Health, Liver Dysfunction, and Pain.

Despite having read extensively about most of these topics in the past, many of them were explained in a more clear, logical way than I'd previously encountered. For that reason alone, I'm glad I read the book and I'm glad I have it in my library as a reference source, despite the glaring flaw regarding the "e" word.

The Bad.  Besides the exercise disaster mentioned above:

1)  Dr. Horowitz tries to coin a new term: MSIDS, which stands for Multiple Systemic Infectious Disease Syndrome.  This is meant to be a sort of overarching spectrum upon which the various neuro-immune diseases fall.  The problem is, we don't need another acronym. This is obviously not a term that will catch on in the larger medical community.  The goal of a book like this should be to make the subject less esoteric, not more.

2)  Similar to the above, Dr. Horowitz proposes an MSIDS diagnostic algorithm amusingly called "The Horowitz Sixteen-Point Differential Diagnostic Map."  Every time he refers to it throughout the book, which is often, he repeats the full 7-word eponymous title.  I pictured the author in an infomercial, and whenever he says "...the Horowitz Sixteen-Point Differential Diagnostic Map" we hear the chime of a spoon against a crystal glass as a cartoonish gleam flashes on the doctor's smarmy grin.  A voice-over adds "TM."

Things like this make me question an author's motive.  Is he a true scientist at heart, nobly trying to expand the knowledge base and heal people in the process, or is he trying to become the next celebrity doctor, ala Dr. Oz?  I don't want to be questioning this when I'm simply here to find some answers to my health problem.  It makes me want to say:  "It's not about you, doctor. It's about the patients."

3)  Each chapter follows roughly the same format: There is an explanation of the scientific evidence regarding the topic of the chapter, be it Immune Dysfunction, Inflammation, etc., and a review of various treatment options.  This is often done quite masterfully.

Then each chapter concludes with an anecdote or case study, lasting anywhere from 2 to 6 pages. These quickly become tedious and formulaic.  A patient comes to Dr. Horowitz very sick and desperate.  Dr. H applies The Horowitz Sixteen-Point Differential Diagnostic Map* (TM) and this results in him trying one or two treatments.  The patient returns a few months later still feeling miserable.  Dr. H digs deep inside himself and has a brainstorm.  He adds another treatment.  The patient returns a few months later smiling and singing. They hug. The end.

These anecdotes add very little except unnecessary length to an already long book.  The book would have been better without them.  They also serve as the vehicle for some eye-rollingly corny jokes.

4)  Dr. Horowitz struggles with objectivity at times.  He mentions that he has treated thousands of "MSIDS" patients but we are rarely let in on the big picture. What percentage are recovering fully?  Are they staying recovered?  Instead, the aforementioned anecdotes leave the reader with the impression that Dr. H is a kind of miracle healer.  It makes one want to run out and immediately board a plane to New York to track him down.  It is, of course, acceptable to use anecdotes to make a medical book more engaging, and naturally, the successes make for the best stories.  But the author should take care to emphasize that the results in the anecdotes are not typical, and that many patients (presumably) remain ill despite using the very same treatments described in the anecdotes.

The same goes for Dr. H's coverage of controversial testing and treatment procedures. It is OK for the author to pick a side on these controversies, but he should first explain both sides and then explain why he picked his side.  For instance, in the Allergies chapter, he discusses so-called IgG allergy testing and comes out heavily in favor of it.  There is very little credible evidence that IgG allergy testing is valid, and in fact, the weight of the evidence seems to suggest it is probably not effective. At the very least, it is highly debatable.  But you wouldn't know this by reading WCIGB.

Another example is Dr. H's reliance on controversial Lyme testing laboratories and other laboratories that test for metals and environmental toxins.  They are all controversial in their own way.  Dr. H should explain both sides of the controversy before choosing a side, so that patients can make their own informed decision.

Despite these flaws, I would have still rated this book fairly high if it wasn't for the melt-down in Chapter 19.  As an ME/CFS patient, I can't in good conscience give it anything other than a 1 star (★)

  

Dr. C on the hunt again

Yesterday I had my first appointment with Dr. C in about a year.  Dr. C is an ME/CFS specialist who is fairly well known in some circles.  The main reason I visited Dr. C this time was to solicit his opinion on my recent, questionable Lyme disease diagnosis.  He did not disappoint.

Research Update

CDC Tests Samples - No Luck

First, as usual, Dr. C brought me up to date on the most recent developments in his corner of the ME/CFS research world.  Dr. C adamantly and passionately believes that ME/CFS is caused by infection by enteroviruses.  For years, Dr. C has been trying to convince the U.S. Centers for Disease Control (CDC) to search for enteroviruses in his library of stomach biopsy samples from 2007.   They recently agreed and Dr. C sent some of his samples to the CDC.  Unfortunately, the CDC was unable to detect the presence of enteroviruses in the samples.  If I understood him correctly, Dr. C seemed to think that the CDC's failure to find evidence of enteroviruses in these samples was due to their age.  He asked them to search again using a different, more sensitive technique and they declined.

RNA Sequencing of Samples

In recent years, Dr. C has also been working with a biologist from Cornell University.  He sent the Cornell researcher a portion of his stomach biopsies, some from moderate patients and others from more severely ill patients.  Rather than look for enteroviruses, the Cornell researcher took the novel approach of sequencing the RNA in the samples.  She started with the samples from moderately ill patients and apparently the patterns she found were unusual.  (The question of what exactly was unusual about the samples was apparently too complicated to explain to me, a lay person, in the context of a doctor's appointment.  I of course understand.) Dr. C is anxiously awaiting the results of the sequencing for the samples from severely ill patients.  He seemed to think this could be a breakthrough.

Vagus Nerve Research  

Dr. C also mentioned some fascinating research from a Danish group of scientists involving the Vagus nerve.  In decades past, doctors sometimes resorted to severing the Vagus nerve of patients who presented with persistent and otherwise untreatable stomach ulcers.  (Thankfully, we no longer treat ulcers this way.)  But as a result, there is a significant population with severed Vagus nerves, which offers an opportunity to study the role of the Vagus nerve in overall health.

Some patients with Parkinson's acquire the disease in sudden onset fashion, after suffering severe flu-like symptoms.  (Sound familiar?)  There is a much lower incidence of Parkinson's disease in people whose Vagus nerves have been cut.  The Danish team believes this is because Parkinson's is sometimes caused by either Enterovirus 71 or Coxsackie B - 4, which enters the body through the stomach and travels from the stomach to the brain via the Vagus nerve, bypassing the blood-brain barrier. The Danish team will publish their evidence soon.

For years, Dr. C has looked for evidence that enteroviruses migrate from the stomach to the brain via the blood.  He never quite found the evidence he was looking for.  He believes the Vagus nerve possibly makes more sense as the vehicle by which the virus travels from the stomach to the brain.

Drugs for ME/CFS

After discussing a new potential drug that could help ME/CFS patients, the details of which Dr. C said were confidential and "not to be shared,"  Dr. C said that it is just a matter of time before we have a drug designed specifically for ME/CFS.  "There will be a drug" he said.  He offered no specifics on his prediction of timing for this drug, which I conclude could mean it's anywhere from 5 to 55 years away.  The good doctor estimates that there are about 4 Million ME/CFS patients in the United States alone.  He said the numbers are often underreported because there are many patients in the "mild" or "functional" category who often aren't counted in the ME/CFS statistic, but who would be candidates for any drug.  His point was that 4 Million patients gives the drug companies plenty of financial incentive to develop an ME/CFS drug.  But I wondered, do the drug companies know there are 4 Million wallets out there begging to be plundered?  

Shortness of Breath

I mentioned to Dr. C that I'd taken a bit of a downturn since the second quarter of 2015, in no small part because shortness of breath has decided to pay me an indefinite visit. He asked if I'd seen any specialists and I mentioned my consultation with a pulmonologist, including the CT scan and echocardiogram.  Dr. C said that none of those imaging techniques will reveal the cause of shortness of breath in ME/CFS patients because they only examine large airways.  The problem in the lungs of ME/CFS patients is inflammation in the microscopic airways.  The only way to detect this type of inflammation is through biopsy.

Dr. C went on to describe one of his ME/CFS patients who was so severely stricken by lung inflammation that she was often hospitalized for three weeks out of every month, and required near constant oxygen supplementation through a tracheostomy (a surgically created hole in the neck).  One of her treating physicians had placed her on high dose prednisone, which lead to a worsening of her condition and nearly killed her.

Dr. C was part of the team that was called into the hospital to decide how to handle this patient, who was a mystery to all but Dr. C.  Because the patient's blood tests were mostly normal, some of the doctors suggested that she was simply holding her breath!  In other words, she was a faker.  Dr. C expressed some anger as he described this, even 'dropping an F bomb,' which I found both endearing and amusing.  I like this guy.

Lyme Disease?

I told Dr. C that I had recently received a positive Western Blot test for Lyme and that I was skeptical of the results.  He asked if the results were from [_______] lab.  I said yes.  He smirked and shook his head.  I said, "So you think it's bullshit?"  (Now that Dr. C had cursed with me, I felt I could express myself freely.)  He said "Yes, it's bullshit."

Dr. C said that the Western Blot test is notoriously inaccurate.  He said that he, himself, sometimes performs the Western Blot test in his lab, and that the results vary even when performed twice on the same sample.  He said there are two labs in the country where "everyone's" samples comes back positive for Lyme.  [_______] lab is one of them.  

He also explained that its doesn't make sense that my results would be positive for IgM and negative for IgG (as I too had questioned.)  Some LLMD's will claim it's because a Lyme patient's body has a deficient immune system, caused by the Lyme itself, but Dr. C said a compromised immune system still wouldn't result in +IgM/-IgG.  

Having had the vagaries of Western Blot testing explained to me by someone who actually performs the test was convincing.  When I first received the test results, I wrote that I felt there was about a 51% likelihood I actually had Lyme.  Now I would say my level of certainty (or uncertainty) has fallen to about 10%.  It is possible, however, that just as LLMD's are often accused of "seeing Lyme in everything," perhaps Dr. C sees enteroviruses in everything, to the prejudice of everything else.  

I have to think about my treatment plan a little more, but for now I'm thinking I will simply continue with Byron White Formula's A-L Complex, and do nothing further about the possibility of Lyme.  In all other respects, I will continue as if I have ME/CFS only and continue with all my other ME/CFS supplements (many of which are used by Lyme patients too).  A-L Complex is, after all, sold as a general immune booster, so it should be helpful regardless of which disease I have.  With that plan, either way, Lyme or ME/CFS, I have at least some of my bases covered.  

Inosine

Finally, we discussed that I am going to try over-the-counter inosine again as an immune modulator.  I tried it once before but stopped because I thought it might be responsible for a bout of costochondritis (a type of chest pain) which arose soon after I started inosine.  Dr. C thought it was unlikely the inosine cause the chest pain, but possible. 

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.