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

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

Sunday, May 1, 2016

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.

Thursday, April 28, 2016

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 acknowledge 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.

Sunday, March 20, 2016

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.

Wednesday, March 2, 2016

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. 

Wednesday, February 17, 2016

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.  


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.  


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... 

Sunday, February 14, 2016

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.

Monday, February 8, 2016

Check Out and [Maybe] Edit

Apparently ME/CFS has it's own wiki.  I recently found out about 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.