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

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

Thursday, July 23, 2015

I've Cut My Supplements Way Down

In February, I wrote that I wanted to cut my supplements way down.  It was partly because my doctor suggested it and partly because I'd wanted to do it for a long time anyway.  Too many supplements is expensive and risks overtaxing the liver.  Not to mention they are a hassle.  So I listed my supplements in order from those that I was most sure were helping, to those that I was least sure were helping.  Then I started eliminating supplements from the bottom of the list.

In April I took a big step back in my baseline health.  I didn't think it was because of the reduced supplements, but just to be safe, I went back on all of them.  Things returned to normal a couple months later, and so I started eliminating supplements again.

Of the 18 supplements on the list, I'm now only taking half of them.  (It's funny, I thought I'd eliminated more than that before I counted just now).  But for many of the suplements that I'm still taking, I've either reduced the doses, or I take the weekends off from them.  The only supplements/Rx's that I take on weekends now are T3 Thyroid and D-Ribose.  Everything else is eliminated on the weekend.

So far, I don't think I feel a difference.  As long as that continues, I will continue to cut down on supplements until either I eliminate all but a few obvious ones (like multivitamin and fish oil), or until I experience a setback.  

For those who might wonder, the supps and Rx's I'm still taking are: T3, Vit. D3, Probiotics, Equilibrant, DHA/EPA, D-Ribose, and only occasionally potassium and magnesium.

Others might wonder: given that I haven't missed the supplements I eliminated, does that mean that they were a waste of time and money?  That's hard to say.  The list I prepared in February was only a fraction of the supplements I've experimented with since getting ME/CFS.  Over the last four years, I've probably tried 4 times that many (so about 70 - which is not unusual for a PWME).  Given the large number of supps I've tried, it would be absurd to say that they all helped, and I specifically recall some that made me worse.  But I think for the most part, I needed the supplements that I took when I took them.  I have certainly improved over the last 4 years, although I'm nowhere near where I'd hoped to be by now in terms of improvements.  I think most of the supplements that I tried and stuck with for any length of time were the right supplements for me at that time.  I don't regret anything.

Friday, July 10, 2015

4 Year Anniversary

My 4 year anniversary came and went last month without me realizing it. I originally came down with the mega-flu that started "all of this" during the first week of June, 2011. In the 3 subsequnt Junes, I have been very aware of my anniversary on the day it came. The fact that I forgot about it this year is probably a sign that I've learned to live with my illness a little more - which can be both good and bad. I definitely think about it less, but I don't want acceptance to prevent me from continuing to aggressively seek answers. 

Tuesday, June 30, 2015

Can't Seem to Complete Lyme Provocation Test

In a video post from April, I explained that my new doctor believes I have chronic Lyme disease, but the results of a Stonybrook Lyme test were inconclusive.  As a result, she (Dr. M) wanted me to conduct a Lyme "provocation" test, in which I take an herbal supplement (called A-L Complex), which is supposed to stimulate the immune system to kill the Lyme-causing borrelia bacteria. Apparently, after the immune system kills some of these borrelia, the Lyme blood tests are more likely to detect the presence of the borrelia (because live borrelia are adept at hiding.)

My instructions were to begin taking the A-L Complex starting with 3 drops per day, then, three days later, increase to 6.  Then, three days later, up to 9, and so on up to 20 per day.  After I reach the 20-per day dosage, I was supposed to repeat the Lyme test.

The problem is that even 3 drops per day made me feel awful--brain fog, headache, muscle pains.  So, on my own, I reduced the dose to a mere one drop per day, and still felt terrible.  (It's interesting that the directions on the bottle of A-L Complex instruct the user to take only 2 drops per week.  We're going way off-label here.)

Over the last month or two, I've continued to experiment with fractional doses, hoping that I could find a way to slowly titrate to 20 drops per day.  As it stands now, I don't see how I will ever be able to make it to 20.  I can't even handle 1.  Granted, I'm being a little bit of a baby about this.  I could do it if I really needed, but it would be near impossible to keep up with my home and work responsibilities at the same time.  So I'm trying to figure out my next step.  I either have to set aside a month in which I reduce my responsibilities and devote myself to titrating and testing, or return to my doctor and admit failure.  I could ask my doctor if there's a "Plan B"--perhaps using antibiotics instead of A-L Complex.  (Antibiotics are, I believe, the standard for Lyme provocation tests, but I originally declined.)   Or perhaps my reaction to A-L Complex is evidence enough that I am dealing with Lyme?

Monday, June 15, 2015

My new headache symptoms - another clue

I've figured out what this new headache symptom is about.  Since my last blog post, in which I wrote about recent headaches, these new headaches have come and gone every five or six days.  They usually last about 2 days.  

My first clue to their origin was that these headaches are accompanied by a tremendous tightening in my shoulders and neck.  This is not the typical tension seen in people who spend large blocks of time in desk chairs.  I've experienced that lesser tension all of my adult life -- it is a minor annoyance.  This is something entirely different.  The tension in my neck and shoulder muscles is easily palpable to myself and others.  At onset, over the course of an hour, knots the size of grapes form in my shoulder muscles.

A legal assistant in my office is a long-time sufferer of tension headaches.  She states that I'm suffering classic tension headache symptoms.  Apparently tension headaches start in the shoulders and neck.  These muscles, in turn, pull on the muscles connected to the top of the skull, producing a headache.  When she explained this, the proverbial light bulb went on.  A little Googling confirmed her assessment.

Why, then, after four years of ME/CFS, has this new symptom emerged?  What I believe is happening is the inflammation that is a hallmark of this disease has taken up occasional residence in a new part of my body. At the risk of oversimplifying this complex disease, it has always been a matter of inflammation (possibly from cytokine "storms") forming in different parts of my body.  When it would hit my groin, I'd feel groin pain.  Kidneys; kidney pain.  Lungs; shortness of breath.  Brain; brain fog.  Etc.

I believe that now, for unknown reasons, the inflammation has started to attack my shoulders and neck.  This results in tension headaches.  I'm actually OK with this as long as the net inflammation in my body isn't increasing.  If the inflammation is hitting my shoulders because it has "left" another part of my body, I can live with that.  I haven't had true groin pain since about February, so perhaps the cytokine storms have moved on?  Joke if you will about the troglodytic nature of men, but I'd rather have the headaches than the groin paid.

[When this new symptom first appeared in the week before my vacation, it was accompanied by brain fog and swollen lymph nodes.  Since then, the brain fog has not been a part of it, and the glandular swelling, only a little.  I think the contemporaneity of the brain fog during that week was coincidence.]

Thursday, May 28, 2015

What I learned from a vacation

In that wake of a recent vacation I took to Croatia, I have to rethink much of what I thought I knew about my illness.  Since the beginning of April, I have been in a crash that was severe enough that I wondered if it should actually be called a relapse.

The day of the vacation arrived and I was feeling about as ill as I've felt at any point the last two years or so.  I was really beginning to regret that I had ever thought I could manage this vacation.  I was lying on a bench at Los Angeles airport with this weird brain-foggy headache that had become my worst symptom in the prior two weeks. It comes with painful knots in my shoulders and sometimes swollen glands in my neck.  It's a new type of headache that I hadn't previously experienced.  I wondered how I would manage an 11 hour flight, a 5 hour layover in Germany, and another two hour flight.  Then a cab ride.  Then a walk up three flights of stairs to a rented apartment in Dubrovnik.

I figured if I could just manage to get to that apartment, then I could repose for an entire week.  I rationalized that, even if I was never able to leave the apartment, at least I would have a view of the Adriatic and fresh salty breezes.  At least I'd have a new stamp on my passport.

My wife had some migraine medicine and she suggested I try it.  I had nothing to lose so I popped the pill.  At around that time, I noticed that the airport had a day-spa right there in the terminal.  There was plenty of time before the flight was supposed to board, so I decided to buy a half-hour neck and shoulder massage by a professional masseuse.

I still don't know if it was the massage or the pill, but by the end of that massage session, I was feeling 85 to 90% better.  I couldn't believe it.  My symptoms continued to improve on the flight to Frankfurt.  By the time I landed in Frankfurt, I actually felt well enough to leave the airport during the layover and get coffee and lunch in the city's center.

Once in Croatia, I was like a person just out of a coma.  Sure, on a few days, I felt the brain-fog/headache, but it was barely noticeable--a background inconvenience.  As I do sometimes on special occasions, I forgot about my diet for the week and ate and drank whatever I wanted. Croissants.  French fries. Baguettes.  Cappuccinos. Gelato.  Beer!  Notwithstanding the time difference and jet lag, I felt more or less like a normal person for that week.  Perhaps strangest of all, the white film that's usually on the back half of my tongue (indicative of candida) was mostly gone all week, despite my broken diet.

So I figured this vacation happened to correspond with a turning point in my crash.  Maybe it was a coincidence, I thought.

I flew back on Sunday, still feeling good.  Had Monday off of work.  Still felt great.  Tuesday morning I wake for work and that weird headache is back just a little.  It's barely noticeable when I first wake.  By the time I get in the car to drive to work, it's raging again.  I think, "what the hell is going on here?"

The symptoms have persisted on and off (mostly on) since Monday.

Most ME/CFS patients will read this and probably think: "There you go. You've proven that your ME/CFS has an environmental trigger.  You're obviously reacting to something in your home, car, or work."

I suppose that may be true, but it doesn't explain why so many other past experiments with changing my environment haven't made any difference, nor why I felt so well (relatively) in my home/work environments over the past year, up until April.

Another possibility is that the symptoms are caused by a supplement.  I did leave a few of my supplements behind to save space in packing.  I'll experiment more with this, but I'm doubtful.

Still another possibility (and believe me I hate to acknowledge that this is even possible) is that stress associated with work is somehow triggering my symptoms.  This still wouldn't explain why my immune system is so screwed up in blood tests, but I suppose it's possible stress could exacerbate immune dysfunction.   My reaction to this possibility is: it doesn't make sense because I'm fairly laid back and don't think of myself as a stressed-out person.  But I suppose stress could be affecting me on a level I'm not aware of.

Bottom line: this vacation has given me a lot of think about and evaluate with my doctor.  I never expected to suddenly feel great on the vacation and I never expected to suddenly regress when I returned.  This certainly seems to be a strong clue, but I don't yet know what it means....

Excellent Article on Anti-Inflammatory Diet

"If the balance shifts by consuming excessive omega-6, the cell membrane produces chemicals called cytokines that directly cause inflammation."
Every once in a while, I find that I need to remind myself of why I've adopted an anti-inflammatory diet.  Most of the time, I don't find it difficult to stick to my diet, but sometimes I'll allow myself a little taste of a sugary dessert or bread.  When I do, sometimes it's very difficult stay on the wagon--to not go crazy and bury my face in a pile of confections.  Articles like this are perfect reminders of why I need to stay on that wagon.

Friday, May 15, 2015

Why it's so hard to tell what's causing an ME/CFS crash

I have a very hard time determining what's causing a crash.  I often go back and forth between two possibilities.  (1) One is that I caught a simple cold virus or flu virus and my weakened immune system is having a difficult time clearing it.  (2) The other possibility is that the crash is more of a normal ME/CFS cycle, where existing chronic viral infections (opportunistic infections that take advantage of a compromised immune system, like EBV, HHV6, CMV, enteroviruses, etc.) suddenly "rally." Sometimes the "rally" can be brought on by stress or overexertion or anything that can further weaken the immune system.

I'm not excluding other possible causes of crashes, but those two seem most likely in my case.

A normal person who doesn't have ME/CFS might think, "we all know what a cold or flu virus feels like.  Can't you tell if you feel like you have a cold or a flu?"  The answer is "no" because one's immune system changes when he/she contracts ME/CFS.  It reacts differently to pathogens -- even ordinary cold and flu viruses. This change is often described as an imbalance between two sides of the immune system: Th1 and Th2.  The famous ME/CFS doctor Cheney describes the problem (as transcribed by one of Dr. Cheney's patients, with permission):

Researchers have demonstrated that most CFIDS patients end up stuck in Th2 mode. This has several consequences. When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated.... 
Cheney notes that other problems ensue. Patients get into trouble on both sides: they overreact to things on the right side and under-react to those on the left. When they are Th2 activated, they no longer have the defense mechanisms to keep dormant all the things they caught in the past. They cannot suppress or control them anymore, and the EBV, chlamydia pneumonia, CMV, etc. reactivate. The yeast also begins to appear. 
The only defense against being eaten alive at this point is RNase L....RNase-L cannot kill any of these things. It only stops them from reproducing. According to Cheney, "It's a line in the sand saying 'No more replication', and it waits for Th1 to come and kill them. But Th1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives.

The Th1 side of the immune system is the side of the immune system responsible for, among other things, attacking and clearing pathogens that are "intra-cellular"--that live and replicate inside human cells. The Th1 immune cells know how to find and destroy viruses that hide inside cells.  Even ordinary cold and flu viruses fall into the this category of intra-cellular that replicate inside cells, meaning a person with a Th2 dominant immune system would have a harder time clearing these viruses.

When a Th2 dominant PWME contracts a cold or flu virus, the virus still triggers the immune system. But it triggers the immune system in a new and different way.  Other aspects of the immune system try to compensate for the deficient Th1 response.  Th2 is turned on (further) when Th1 should be turned on.  So when a Th2 dominant ME/CFS patient contracts a new virus, we don't feel the same as when a normal person encounters a new virus.  Our immune systems becomes triggered, but in all the wrong ways.  These "wrong ways" make us feel horrible - but not "horrible" in the same way a normal person feels when they get a cold or flu.  It's much different.  And it lasts longer.  It comes with neuorologial symptoms like brain fog, muscle twitches, numbness, and a long list of other oddball symptoms.

Because of this, I often can't distinguish between the two types of crashes I described in my first paragraph.  They essentially feel the same -- with the possible exception that a cold or flu- triggered crash might bring more typical symptoms like sore throat, and runny nose, in addition to the "oddball" symptoms.  On the other hand, I can't rule out that a "rally" type crash might also bring on those symptoms.

Sometimes I wonder if all of the crashes I've ever had fall into only one of the two categories.  I have this pet theory that I wonder about sometimes.  Maybe all of the ME/CFS crashes that I've ever had are due to me encountering run-of-the-mill every-day viruses that my weak immune system struggles to neutralize. We all (healthy and sick people) people encounter viruses nearly every day, but a healthy person's immune systems manages to clear most of these viruses without the person every feeling symptomatic. It's only the occasional, more robust virus that makes the person feel symptomatic.  It's possible that having ME/CFS--at least my version of it--is simply a state of having my immune system constantly triggered in a defective way.

(For many of my ME/CFS friends who react to mold or other environmental triggers, it's essentially the same thing except the catalyst that triggers their immune systems is different.  Rather than being viral, it's environmental.)

The only way I could test this theory would be spend time in a hermetically sealed bubble like the famous Seinfeld "bubble boy."  My suspicion is that if I ever spent time in an environment free of pathogen exposure, I'd feel great.  Since that's obviously not realistic, I'll just have to wonder...