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, February 15, 2015

Re-Ranking My Supplements

As I wrote about in my last post, I've been planning to rank all of my supplements and prescriptions in order of most effective to least effective.  After that, I plan to start cutting from the bottom until I notice a decline in my health.  The idea is to get down to only the supplements and prescriptions I absolutely need in order to maintain my current baseline health.  My new doctor supported his idea.

I had ranked by supplements once before, but it has been years since I've done so, and since then, many of my supplements have changed.  I've also had much more time to observe which supplements are clearly helpful and which supplements are more questionable.

Unlike last time, I'm not going to rate any "treatments" other than supplements and prescriptions -- in other words, nothing that fits into the category of lifestyle adjustments, like changes to diet or sleep habits.

I'm only including supplements that I take every day.  I am not including "as needed" supplements.  For instance, whenever I'm coming down with a cold, flu, or other mystery bug, I take my cold-buster regimen.  I'm not worried about cutting back on those supplements at this time.

The ranking is included on the attached Google Docs spreadsheet.  The supplements and prescriptions at the top of the list are the most effective and would be the last to be eliminated.

Saturday, February 7, 2015

I changed doctors. My new path....

For the past several years, I have regularly seen two doctors for ME/CFS.  One of them is a well-respected ME/CFS specialist.  (I call him Dr. C on this blog).  For the most part, he's everything you'd want in an ME/CFS doctor, except he has a pretty narrow focus and slim range of treatment options.  In other words, he's good at the few things he does.

The other doctor (Dr. W) is more of a generalist, but with a specific focus on all these complex maladies that baffle the average family doctor.  He speaks the language of ME/CFS, lyme, fibromyalgia and autoimmune diseases (although he's a little too focused on pushing his firm's private label supplements.)  I used Dr. W for exploring treatment options that Dr. C is simply unfamiliar with.

Over the past three years, under the dual care of Dr. C and Dr. W, I have slowly shown improvements, bit by bit.  I'm still far from my pre-ME/CFS self, but I am much more functional than before.  Of course, I realize that my situation could change at any time.  The "R" word is always a concern, so I try to enjoy every day of this for as long as it lasts.

Why I'm Switching

I've recently come to believe that I've gone as far as I can go with Dr. W.  He hasn't raised any new ideas in the past few appointments, and my improvements seem to have hit a plateau.  And I'm greedy, so I want more.

Plus, Dr. W's medical firm owns its own compounding pharmacy and private label supplements, and I can no longer ignore the inherent conflict of interest.  I don't appreciate having to wonder in the back of my mind: does he really have my best interests in mind when he recommends a supplement?  With every recommendation from Dr. W, I found myself double and triple checking his advice from other sources.  I'm tired of that.  And so I'm replacing him with Dr. M.

Like Dr. W, Dr. M is not an ME/CFS specialist per se, but the next best thing: a specialist in diseases like ME/CFS, lyme, fibro and autoimmune.  On her website, she refers to herself as an "integrative medicine" doctor (treating "body, mind and spirit"), which at first sounded a little too hippy-dippy for me.   I'm, quite frankly, not too interested in discussions of my "mind" or "spirit"... just western medicine, thank you.  But I scheduled a 10 minute interview with Dr. M before choosing her as my new doctor and she convinced me that she's intelligent and she knows her stuff.

The Appointment

Before the appointment, I had to fill out a thirty five page questionnaire and submit a 3-day food log of everything I ate and drank.  The nurse also asked me to bring in copies of my lab test results.  I had to laugh as I handed them a 130 page stack of labs.  "Have at it." 

To my surprise, by the time of me appointment, Dr. M had practically memorized my lab results.  She said she had "studied them the night before," which showed me that (a) she loves her job enough to work after-hours, and (2) she doesn't just skim a patient's history like most doctors.  Throughout the appointment, she struck me as a medical "geek," which is exactly what I want in my doctor.  

Dr. M had asked me to bring all of my supplements and prescriptions to the appointment (in their original bottles).  We went through them one-by-one and she gave me her opinion as to whether I should continue or discontinue each.  To my surprise, she actually supported my continued use at least half of them.

I told Dr. M that I have been planning to make a list of all my supplements and prescriptions in order of perceived efficacy.  Then I had planned to start cutting from the bottom of the list, eliminating one every two weeks until I started noticing a decline in my health.  She supported and encouraged this idea, and encouraged me to do it as a homework assignment before my next appointment.  So I'm going to incorporate her input into my list and then post my list on this blog later this month.  

The New Plan

For years, I've been meaning to "close the loop" on investigating whether lyme disease might be at the root of my health problems.  In my mind, the point would be to, mostly like, rule it out, so that I don't have to wonder anymore.  In my mind, I've never considered it likely for a number of reasons that are beyond the point of this post.

As it turns out, Dr. M is, among other things, a lyme literate medical doctor (LLMD).  She wants to investigate the possibility that a chronic bacterial infection like lyme, borrelia, bartonella, or babesia is at the root of my problems.  In her view, many patients who present with ME/CFS-type symptoms actually have a chronic bacterial infection at the root.  (She didn't actually say "many" but that's the way I interpreted her words.)

I told her I want something more than a clinical diagnosis of lyme before I consider lyme treatments. It's my understanding that many LLMDs will basically diagnose anything that moves with lyme disease.  I know that the ELISA and Western Blot blood tests for lyme are extremely flawed (way too insensitive to catch most cases of lyme), but I need to see something tangible.  At the same time, I'm wary of the IGeneX test, which has the opposite problem.  People criticize it for having too many false positives. (Some say it comes back positive 94% of the time, and that IGeneX has been or is being investigated by the FDA because of it!)  

Dr. M still says the IGeneX test is accurate but, in the end, we mutually decided to go with a sort of middle ground: the Stony Brook test for lyme.  I don't know anything about this test at the the moment, so I will have to research it and report back.  Dr. M made it sound as if it was more sensitive than ELISA and Western Blot, but less sensitive than IGeneX.   

I told doctor M that I'm going to approach this with a fair amount of skepticism.  She seemed to completely understand.  She said we'd take it step by step and she feels that, in time, she'll be able give me sufficient confidence in the results: positive or negative.  So I'm going to keep an open mind, but with a mix of healthy skepticism.  

Either way, positive or negative, she feels confident she'll be able to help me continue to improve. I like that she's confident but not cocky.   

My next appointment is in late March.  I'll keep updating on appointments with Dr. M...

Monday, January 12, 2015

2014 - My Health in Review

2014 saw significant improvement for me again.  Based on an average of all 365 days of my daily health chart, my daily health rating went up almost four percentage points from 2013. (And 2013 was over 5 points higher than 2012).  So clearly I'm headed in the right direction.  Of course, this all assumes that my ratings system stays consistent over time, (which I think it has--I use certain benchmarks to ensure that--but it's hard to be 100% certain.)

On my daily health chart, besides giving myself a daily overall health rating, I keep track of what I call my "big three" symptoms, each on a scale of 1-10:  (1) flu-like inflammation & fatigue, (2) air hunger / shortness of breath, and (3) kidney-area flank pain.  In 2014, only 26 days out of 365 recorded any flank pain whatsoever (7%), and no entry for flank pain was over a 4 out of 10.  

So when I created a new spreadsheet for my 2015 health chart, I eliminated the "flank pain" column.  Ah, but ME/CFS giveth and taketh away.  I had to replace that column with a column for prostate pain, as that seems to be my new nemesis.  Consistent with what many other ME/CFS patients have written online, it often seems as if the pain and inflammation associated with this disease simply migrates around the body, camping out in one area for a few years before mysteriously moving onto another area.

My 2013 year-end review, posted last January, said that maybe 2014 would be the year that I started to cut back on supplements and see which ones I truly need.  Well, that hasn't happened yet, for various reasons, but I'm renewing that goal for 2015.  I'll be starting work with a new doctor soon, and she has promised to help fine-tune my supplement routine.  

As I wrote about a few weeks ago, I quit Dr. Yasko's program after almost two years of experimentation.  I'm going to continue with a few "short route" methylation supplements for the time being, but have stopped experimenting with vitamin b12 and "long route" supplements.  They simply haven't worked out no matter how slowly I titrate, or how small a dose, or how long I gave myself to push past "start-up reactions".  I mean, yes, I can take a molecule of B12 and be OK, but any substantial dose whatsoever brings on nerve inflammation and brain fog.  So I'm done experimenting.  It doesn't seem that I really need methylation to make improvements right now, so why keep messing with it?   

Overall, 2014 saw a large return of functionality for me, in ways that just weren't possible a year or two ago.  I still have a long way to go, and I realize that the trend could reverse at any time, but for now I'm just trying to enjoy every day in which I don't feel like I did a few years ago.   

Thursday, January 8, 2015

On Celebrex, Pain, and My ****

[This post contains some detailed descriptions dealing with male anatomy.  If that bothers you, don't read on.]

Just after Christmas, my prostate pain came back.  Truthfully, it never went away, but for most of December it had become mild.  Then it stoked back up for no clear reason.

(I'm trying not to let this blog turn into "My Prostate Blog," but it's what's on my mind lately.  I noticed that my click-rate falls when I blog about this topic, probably because half the population has trouble relating.  But I don't blog for clicks anyway.)

I returned to my urologist and told him that we had no other choice but to do "the test."  As I wrote in previous posts, the best way to know if one's prostatitis is bacterial or non-bacterial is to have a doctor "massage" the prostate (yes, by insertion of a finger through the anus), and then test the fluid that's forced out.  (The fluid isn't semen, but one component of it.) 

From September to November I took a constant string of antibiotics based on my urologist's mere guess that my problem was bacterial.  Many doctors think nothing of prescribing long term antibioticsthey're apparently not up on the latest research about the importance of healthy gut flora. I had reluctantly gone along with antibiotics through the end of November, but when the pain came back, I'd had enough of the indeterminacy.  

My urologist kept delaying testing the prostate fluid because he said the process of forcing it out is painful and sometimes makes prostatitis worse.  I said I had to know before taking any more antibiotics.  I like information, not guesswork.  PLUS, if the test comes back positive, we would know exactly what type of bacteria we're dealing with and what type of antibiotic to use.  

So we did the test.  It was painful, but not excruciating.  In fact, I felt much better for about 2 or 3 days after the test -- something many prostatitis patients experience.  Apparently, draining some of the fluid in the prostate often eases the pain.

To help with the pain until the test results come back, the doctor prescribed Celebrex.  I've never tried it before, but so far it seems to be helping quite a bit.  As far as I can tell, Celebrex has no euphoric affect like Vicodin, Percocet, or Ultram (which is good when I need to work), but seems to reduce the inflammation a lot.  So far, it's been a good week for pain.

Thursday, December 25, 2014

You know you have ME/CFS when...

The Christmas gift you are most excited about is a pair of battery-heated socks. 

Sunday, December 21, 2014

No More Methylation Experiments

I started experimenting with Nutrigenomics and Amy Yasko's methylation protocol almost two years ago, in March, 2013.  Prior to that, I had dabbled in a couple "simplified" methylation protocols without much success.  I knew that I would never get the idea of methylation protocols out of my system until I tried the full protocol.  I decided to go "full Yasko."

Now, almost two years later, I'm at a point where I'm ready to end the experimentation.  I wouldn't exactly call all the experiments a success, but I wouldn't call them failures either.  I was able to see some improvements implementing what Yasko calls "short cut" supplements, but not "long route" supplements.

Quick review:  Dr. Yasko theorizes that there are two chemical pathways by which the body's methylation cycle--an important detoxification system--works.  The short cut is a simpler chemical process that results in some detoxification.  The long route is more complicated, but results in more significant detoxification.  Dr. Yasko recommends that patients implement the short cut first, then concentrate on the long route.

(My full journey with methylation protocols can be read by clicking the "Nutrigenomics" tab in the right hand column.)

I don't think anybody could claim that I failed to put enough effort into the process.  I started with genetic testing through 23andMe, tested my hair and urine regularly, and worked with Yasko's web resources to tweak my supplement levels--all while trying to find the perfect combination of supplements to trigger the methylation cycle in just the right way.

I had some success with short cut supplements, including the use of a supplement called Phosphatidyl Serine Complex, or PS Complex, or PS/PC/PE. This supplement seemed to help reduce brain inflammation and reduce the dreaded "brain fog."  I still take this supplement and the other "short cut" supplements today.  I plan to continue taking them.

When it came to "long route" supplements, I could never quite get it right.  The cornerstone of long route supplements is vitamin B12.  Whenever I added Vitamin B12 to my regimen, I would experience increased levels of brain and nerve inflammation.  I would endure increased "brain fog" and hand, foot and leg numbness and uncoordination.  Each time this would occur, I would back off of B12 and start over, always going "low and slow" as Dr. Yasko recommends.  (This means starting with very low doses, and increasing very slowly).

My genetic results suggested that the "active" forms of B12 (methylcobalamin and adenosylcobolamin) would be problematic for me, so I concentrated on other forms.  But it seemed no matter how slowly I titrated and no matter what forms of B12 I used, I couldn't avoid feeling worse while taking B12.

I also don't think the problem was that I failed to stick with it long enough to move past initial start-up reactions.  After each failed attempt, I would take a new run at it.  For the most part, I would continue with each new B12 run for 3 to 4 months before backing off and trying again with a new combination.

So I've now come to the conclusion that, for unknown reasons, methylation protocols involving vitamin B12 simply aren't for me.  My body chemistry doesn't seem to want to have anything to do with vitamin B12, other than in the smallest doses found in regular multivitamins.

So I plan to stick with short cut supplements, but stop experimenting with long route supplements, at least for the foreseeable future.  I am changing doctors after the new year (moving on from Dr. W.), and my new doctor has experience guiding people through methylation protocols.  I won't rule out the possibility of returning to methylation protocols in the future, under the guidance of my new doctor.  But I think for now, we have other things to work on first.

Thursday, November 20, 2014

No Interferon for me

I wrote in my October 12th post that Dr. C offered to give me samples of Interferon injections, combined with Prozac, as a short-term (1 - 2 month) antiviral treatment.  He offered this because of my ongoing prostatitis pain, believing the pain to be related to viral inflammation.  Dr. C theorized that the Interferon/Prozac treatment would control the virus long enough for inflammation to die down.

Throughout most of October and November, I delayed any decision to start the treatment because the treatment apparently causes severe flu-like symptoms.  With my family and work obligations, I couldn't afford to be 100% out of commission with a flu.

In the mean time, my prostatitis started to dissipate.  Not completely (it still comes and goes), but it seems like it's trending in the right direction.  I haven't had any days lately where the pain of sitting is unbearable.

At the same time, I spoke to a fellow patient who emphasized how serious and strong of a treatment Interferon is.  It's not to be taken lightly.  Plus, I researched the side effects of Prozac and it sounds like it can turn someone into a zombie--no emotions.  I don't want to be a zombie for the holidays.  So my little risk/reward analysis told me it wasn't worth the risk of experimenting with Interferon/Prozac. But it's good to know that it's (hopefully) still an option if things get really bad again.