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, April 12, 2015

New doctor thinks it's Lyme... I'm not so sure


Part 1
video

                                                                             Part 2
video

Saturday, April 11, 2015

Update On Last Post

I'm still trying to figure out if I'm dealing with a run of the mill virus or some kind of more serious setback. On Thursday a nasty sore throat set in. I was thrilled. This made it much more likely that I'm dealing with a  run-of-the-mill pathogen  - one I might defeat in a week or two. 

I went to a walk-in clinic on Friday and the doctor swabbed my throat. Although the swab came back negative for strep, she said it still looked like strep from her visual observation and based on my other symptoms.  So she prescribed me penicillin.  (*sigh*) Antibiotics again. But what are my alternatives? I can't just let strep go unchecked. 

She wanted to prescribe me Prednisone for two days as well, but after I explained some of my blood test results that indicate compromised immunity (low NKC function, low CD57, low IGG subclass 3) she said I probably shouldn't take the Prednisone. I filled the prescription anyway...just in case I need it some day. 


Wednesday, April 8, 2015

Possible relapse - very frustrating

I keep a daily rating of my overall health, then I tabulate an average at the end of each month to track my progress.  March, 2015, was my best health month since I first became ill in the Summer of 2011. Even before I tabulated the average, I could tell March was going to be a blockbuster. I only had one or two days in the month when I didn't feel like I could accomplish about 90% of the things I needed to do (work, errands, child care) and maybe 80% of the things I wanted to do. Short of any cardiovascular exercise (which still induces a crash), I was, if not exactly "living large," living upper-medium.  

As March continued, I started wondering if I should consider myself "in remission."  I wasn't close to my pre-ME/CFS self, but I was wondering if I should nonetheless consider myself more-or-less in the category of "regular people."  I still regularly experienced symptoms like "air-hunger," swollen lymph nodes, and random inflammation, usually in the area of my kidneys and pelvic floor, and many others.  But over time, these symptoms had reduced in severity to the point where I felt I could live with them without too great of a reduction in quality of life. March was the pinnacle of this.

So naturally I went nuts during the month of March, despite my better judgement.  I started drinking coffee on a daily basis and running around doing errand after errand like I'd never heard of ME/CFS.  "What's this Myalgic Whatchamacallit you speak of?"  I let myself work later and later hours.  I even worked a weekend, despite reservations in the back of my mind.  It's easy to say now, "I should have known better not to push it so hard." But then again, as I improve, how will I know what my new limits are unless I test them?  Plus, who has the discipline not to fall back into old habits, i.e., being a regular person?  If you do, you're stronger-willed than me.  

On Friday, April 2, body-wide inflammation swept over me and I knew it was something significant.  It's only been 5 and a half days since then, so maybe it's too early to call it a relapse.  Sunday was a so-so day.  And even in my current state, I'm more functional than many patients.  It's nonetheless disappointing.  I keep holding out hope that this is just a "bug" (sick on sick), but it doesn't feel like it.  Unlike with a typical viral infection, the symptoms aren't localized to any particular area of my body.  They are everywhere: brain fog, swollen nodes, shortness of breath, kidneys inflamed, gums inflamed, cold hands and feet, weakness, pain in pelvic floor muscles.

Another possible explanation for this downturn is that I recently started experimenting with eliminating certain supplements and prescriptions from my daily routine.  So far I've cut out OraKidney, potassium, PS Complex, Valacyclovir, and B-complex With Metafolin.  I also cut Vitamin D-3 down from 10,000 IU per day to 5,000.  I cut back on Testosterone injections too because I thought it might be contributing to pain in my pelvic floor muscles.  Just to be safe, I'm going to start going back on those supplements until I get this figured out.  

It will be interesting to see how this one plays out...

In the meantime, I got a bunch of test results back from my new doctor.  I owe this blog an update on those results too...coming soon.  Short version: CD57 (a type of Natural Killer Cells) is pathetically low.



Thursday, March 12, 2015

Blog-0-meter

Out of the blue I received the email below from my brother today.  It assesses my progress with ME/CFS.  Although it was meant to be funny (and it is), it is actually surprisingly accurate.

I came up with another barometer in assessing your progress with CFS. It assumes that there is negative correlation between the number of blogs you post and how you are generally feeling/progressing. For example, the higher # of blogs you post, the worse you feel over a given period of time. This assumption follows the belief that the more you are crashing, the more you are thinking about CFS and the more you are blogging about CFS. The opposite relationship should hold true as well. The less you are crashing, the less you are thinking about CFS and the less you are blogging about CFS.  
The obvious problem with this metric is that you have likely gotten tired of blogging over time regardless of how you are feeling. Therefore, the blogs naturally have become more infrequent with the passage of time. This measure ignores that issue and should only be referred to for general trends. Furthermore, it is not a linear relationship, i.e., ½ the amount of blogs does not mean that you are feeling 2X as good as baseline. 
Below are the # of blogs per year (please note I have not broken down monthly yet and 2011 and 2015 I have excluded because they are stub years): 
2012    139 blogs 
2013    75 blogs 
2014    43 blogs  
Two other contributing factors to above. 1) It was a slow day at work 2) I was inspired by reading some of your blog today. If one thing is clear, you want hard numbers and facts to back up CFS diagnosis, treatments and progress.  
Without knowing anything about CFS, this is the best I could come up with. The good news is my analysis reveals that you are indeed feeling better.

I have to say, his analysis is pretty accurate.  I do blog more when I'm feeling worse--up to a point. There's a point where I feel too sick to even blog, but I'm one of the lucky patients who rarely crosses that threshold.  And yes, I'm giving this the "Tracking" tag -- it's as good a measure as any other.

It also reminds me how lucky I am to have family members who generally "get it" and don't think ME/CFS is a joke. So many patients don't have that.

I'm anxiously awaiting the promised monthly breakdowns!

Wednesday, March 4, 2015

Wait, now I can drink coffee?

This disease is so odd, the way it evolves over time.  For the first three years of ME/CFS, I would crash if I drank coffee.  Even decaf.  And believe you me, I tried many many times, such is my love of coffee.  I kept thinking, "oh, the last time was a fluke.  I just happened to crash right after drinking coffee  It will be different this time."  It took about 8 to 10 experiments before I finally accepted that I couldn't drink coffee.

Recently, I've tried it again, starting with decaf, and all of a sudden I can drink it again without crashing.  I don't know if that means I should, but I just can't emphasize enough how nice it is to know that I can if I want... at least occasionally.

On the bad side of things, that aching in my kidneys that had gone away for so long is starting to come back again.

That's how it seems to go with ME/CFS for me ever since I got it.  One issue will resolve itself, but another will arise.  Often it feels like a zero sum game.

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.  

https://docs.google.com/spreadsheets/d/1ElblrbMj20NVgyC2jH881ar6YF7MpkafmG4UmTnCHIg/edit#gid=0

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...