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

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

Monday, June 6, 2016

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.

Tuesday, May 24, 2016

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...

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 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.

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...