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

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

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...


  1. Interesting. Thanks for the update bus Dr. M a medical doctor or a naturopath; that is, Is her Lyme treatment an antibiotic or herbal approach? I'm curious if I should see an integrative doc as well but right now I'm quite unsure....

    1. Yorke, she's a medical doctor. In my initial interview she mentioned that she treats lyme with either antibiotics or "other treatments" depending on what the patient prefers. I'll have to find out more depending on what my tests show...

  2. I feel the exact same way about Lyme disease. I have the IgeneX test sitting downstairs for the last year or two because I didn't want to spend $1100 when I doubt I'd be convinced enough to undergo long-term antibiotics. Looking forward to hearing more about this middle ground test.

  3. She sounds like a great doctor. I wish I had one like her over here.