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, January 30, 2016

Dr. C on the hunt again

Yesterday I had my first appointment with Dr. C in about a year.  Dr. C is an ME/CFS specialist who is fairly well known in some circles.  The main reason I visited Dr. C this time was to solicit his opinion on my recent, questionable Lyme disease diagnosis.  He did not disappoint.

Research Update

CDC Tests Samples - No Luck

First, as usual, Dr. C brought me up to date on the most recent developments in his corner of the ME/CFS research world.  Dr. C adamantly and passionately believes that ME/CFS is caused by infection by enteroviruses.  For years, Dr. C has been trying to convince the U.S. Centers for Disease Control (CDC) to search for enteroviruses in his library of stomach biopsy samples from 2007.   They recently agreed and Dr. C sent some of his samples to the CDC.  Unfortunately, the CDC was unable to detect the presence of enteroviruses in the samples.  If I understood him correctly, Dr. C seemed to think that the CDC's failure to find evidence of enteroviruses in these samples was due to their age.  He asked them to search again using a different, more sensitive technique and they declined.

RNA Sequencing of Samples

In recent years, Dr. C has also been working with a biologist from Cornell University.  He sent the Cornell researcher a portion of his stomach biopsies, some from moderate patients and others from more severely ill patients.  Rather than look for enteroviruses, the Cornell researcher took the novel approach of sequencing the RNA in the samples.  She started with the samples from moderately ill patients and apparently the patterns she found were unusual.  (The question of what exactly was unusual about the samples was apparently too complicated to explain to me, a lay person, in the context of a doctor's appointment.  I of course understand.) Dr. C is anxiously awaiting the results of the sequencing for the samples from severely ill patients.  He seemed to think this could be a breakthrough.

Vagus Nerve Research  

Dr. C also mentioned some fascinating research from a Danish group of scientists involving the Vagus nerve.  In decades past, doctors sometimes resorted to severing the Vagus nerve of patients who presented with persistent and otherwise untreatable stomach ulcers.  (Thankfully, we no longer treat ulcers this way.)  But as a result, there is a significant population with severed Vagus nerves, which offers an opportunity to study the role of the Vagus nerve in overall health.

Some patients with Parkinson's acquire the disease in sudden onset fashion, after suffering severe flu-like symptoms.  (Sound familiar?)  There is a much lower incidence of Parkinson's disease in people whose Vagus nerves have been cut.  The Danish team believes this is because Parkinson's is sometimes caused by either Enterovirus 71 or Coxsackie B - 4, which enters the body through the stomach and travels from the stomach to the brain via the Vagus nerve, bypassing the blood-brain barrier. The Danish team will publish their evidence soon.

For years, Dr. C has looked for evidence that enteroviruses migrate from the stomach to the brain via the blood.  He never quite found the evidence he was looking for.  He believes the Vagus nerve possibly makes more sense as the vehicle by which the virus travels from the stomach to the brain.

Drugs for ME/CFS

After discussing a new potential drug that could help ME/CFS patients, the details of which Dr. C said were confidential and "not to be shared,"  Dr. C said that it is just a matter of time before we have a drug designed specifically for ME/CFS.  "There will be a drug" he said.  He offered no specifics on his prediction of timing for this drug, which I conclude could mean it's anywhere from 5 to 55 years away.  The good doctor estimates that there are about 4 Million ME/CFS patients in the United States alone.  He said the numbers are often underreported because there are many patients in the "mild" or "functional" category who often aren't counted in the ME/CFS statistic, but who would be candidates for any drug.  His point was that 4 Million patients gives the drug companies plenty of financial incentive to develop an ME/CFS drug.  But I wondered, do the drug companies know there are 4 Million wallets out there begging to be plundered?  

Shortness of Breath

I mentioned to Dr. C that I'd taken a bit of a downturn since the second quarter of 2015, in no small part because shortness of breath has decided to pay me an indefinite visit. He asked if I'd seen any specialists and I mentioned my consultation with a pulmonologist, including the CT scan and echocardiogram.  Dr. C said that none of those imaging techniques will reveal the cause of shortness of breath in ME/CFS patients because they only examine large airways.  The problem in the lungs of ME/CFS patients is inflammation in the microscopic airways.  The only way to detect this type of inflammation is through biopsy.

Dr. C went on to describe one of his ME/CFS patients who was so severely stricken by lung inflammation that she was often hospitalized for three weeks out of every month, and required near constant oxygen supplementation through a tracheostomy (a surgically created hole in the neck).  One of her treating physicians had placed her on high dose prednisone, which lead to a worsening of her condition and nearly killed her.

Dr. C was part of the team that was called into the hospital to decide how to handle this patient, who was a mystery to all but Dr. C.  Because the patient's blood tests were mostly normal, some of the doctors suggested that she was simply holding her breath!  In other words, she was a faker.  Dr. C expressed some anger as he described this, even 'dropping an F bomb,' which I found both endearing and amusing.  I like this guy.

Lyme Disease?

I told Dr. C that I had recently received a positive Western Blot test for Lyme and that I was skeptical of the results.  He asked if the results were from [_______] lab.  I said yes.  He smirked and shook his head.  I said, "So you think it's bullshit?"  (Now that Dr. C had cursed with me, I felt I could express myself freely.)  He said "Yes, it's bullshit."

Dr. C said that the Western Blot test is notoriously inaccurate.  He said that he, himself, sometimes performs the Western Blot test in his lab, and that the results vary even when performed twice on the same sample.  He said there are two labs in the country where "everyone's" samples comes back positive for Lyme.  [_______] lab is one of them.  

He also explained that its doesn't make sense that my results would be positive for IgM and negative for IgG (as I too had questioned.)  Some LLMD's will claim it's because a Lyme patient's body has a deficient immune system, caused by the Lyme itself, but Dr. C said a compromised immune system still wouldn't result in +IgM/-IgG.  

Having had the vagaries of Western Blot testing explained to me by someone who actually performs the test was convincing.  When I first received the test results, I wrote that I felt there was about a 51% likelihood I actually had Lyme.  Now I would say my level of certainty (or uncertainty) has fallen to about 10%.  It is possible, however, that just as LLMD's are often accused of "seeing Lyme in everything," perhaps Dr. C sees enteroviruses in everything, to the prejudice of everything else.  

I have to think about my treatment plan a little more, but for now I'm thinking I will simply continue with Byron White Formula's A-L Complex, and do nothing further about the possibility of Lyme.  In all other respects, I will continue as if I have ME/CFS only and continue with all my other ME/CFS supplements (many of which are used by Lyme patients too).  A-L Complex is, after all, sold as a general immune booster, so it should be helpful regardless of which disease I have.  With that plan, either way, Lyme or ME/CFS, I have at least some of my bases covered.  


Finally, we discussed that I am going to try over-the-counter inosine again as an immune modulator.  I tried it once before but stopped because I thought it might be responsible for a bout of costochondritis (a type of chest pain) which arose soon after I started inosine.  Dr. C thought it was unlikely the inosine cause the chest pain, but possible. 

Thursday, January 28, 2016

Allergy Testing Results

Lately I've been on a downswing in my health.  As a result I've gone through a period of renewed answer-seeking.  As one part of this quest for more answers, I've visited a few doctor specialists including a pulmonologist and allergist/immunologist.

Some say it's a waste of time to consult doctors who are not specialists in ME/CFS because they are generally "clueless."  I agree to some extent, although I think it's possible that, under certain circumstances, specialists can help a patient solve a small portion of the ME/CFS puzzle.  I also think it can be dangerous to always write off new symptoms as "just another manifestation of ME/CFS."  That's not an assumption you want to be wrong about.  It's better to be safe.

I had a follow up appointment with the allergist on Monday, still trying to find answers to my shortness of breath and post nasal drip. They conducted an allergy skin test in which they tested me for 50 of the most common allergens--mostly environmental allergens, but the test included a few of the most common food allergies.

Allergy Skin Tests

For those that haven't had this test, the nurse applies a grid to the patient's skin.  The grid contains a number of needles that each contain a small amount of a potential allergen.  Each needle introduces the allergen into the skin by puncturing or scratching the surface.  The test is usually performed on the forearm or back.  For me, they performed the test on the back because the forearm doesn't provide enough space for 50 punctures.

The test doesn't hurt; it simply itches slightly.  After 15 minutes the nurse comes back and looks to see where, if any, there are red marks (inflammation) on the skin.  The nurse keeps track of where each of the allergens was administered and that tells him/her what you're allergic to.

My Results

The results are given with a score of 0 to 15.  Any scores in the 7 - 11 range are considered highly indicative of an allergy.  For me, nothing scored that high.  A handful of results scored in the 2-5 range, indicating a "mild" allergy.

Mold.  I've recently had two different blood tests that, according to my doctor, revealed I am not genetically predisposed to react to mold.  This is consistent with my own experience--mold avoidance never did anything for me.  The allergy test did, however, show reactivity to two outdoor molds. According to the allergist, the results do not mean I need to check my home for these molds because they only grow outdoors.

Food.  They tested for wheat, egg, milk, and peanut allergies and I was negative for all four.  However, the next day after the test, I read in "Why Can't I Get Better?" by Dr. Richard Horowitz that scratch tests only test for IgM reactivity -- immediate, severe reactions.  According to Horowitz, one can have delayed reactions (IgG antibodies) which don't reveal until 24 - 48 hours later.  I may need to try an elimination diet to determine if I have IgG food allergies.  This is something I might explore in the near future.

Dust. I was negative for dust allergies (dust mites.)  This surprised me somewhat.  I thought that if anything could explain why I often seem to have worse SOB and PND in my car, it would be dust.

Trees and Weeds.  I only had mild allergies to 2 of the 15 trees and weeds tested.  One was a tree that only grows on the East Coast.  The other was olive trees (the leaves, not the pollen.)  I asked my doctor if this means I should avoid taking Olive Leaf Extract (OLE) as a supplement (something I was taking as of Monday, and which was an ingredient in another supplement I was taking.)  She said, "yes" but she was clearly guessing.  Subsequent Googling of that question lead to conflicting results: some said yes, some said no.  I'll probably avoid OLE to be safe.

Cats and Dogs.  I have mild allergies to both cats and dogs.  I knew about the cat allergy, but not about dogs.  Several months ago, my kids asked if we could get a dog.  Having been bitten by a dog as a child and never really being much of a fan of dogs since, I told my kids we couldn't get a dog because I was "allergic."  Apparently that wasn't a lie!

My Conclusions

The only useful information to come out of this allergy testing was ruling out IgM allergic reactions as a major contributor to my inflammation--at least for the 50 common allergens we tested.  There is some value in that.  I also learned that maybe I should avoid olive leaf extract as a supplement.  Unfortunately, I still don't have an answer as to why my SOD and PND often gets worse in my car.

Wednesday, January 27, 2016

My wild adventure with Phosphatidylcholine

One of my doctors (Dr. M) recently recommended I treat with Phosphatidylcholine (PC).  Dr. M is convinced I have Lyme disease, which I’m highly skeptical about.  But since PC is often recommended for people with ME/CFS too, I thought it was about time I try it.

What is Phosphatidylcholine

Essentially, PC is a lipid that is the primary component of the cell walls within the human body.  As a supplement, sometimes PC is combined with other “lipids” in what’s sometimes called lipid therapy.  According to Dr. M, people with Lyme and ME/CFS sustain damage to the cell walls and taking oral PC helps repair the damage.  Healthy cell walls are critical to overall health for reasons too complicated for this post.  Dr. M stated that many of her patients report feeling significantly better on PC. 

At the same time I received Dr. M’s advice, I happened to be reading Dr. Richard Horowitz’s book, “Why Can’t I Get Better,” about Lyme, ME/CFS, Fibro, and other chronic illnesses.  At times, it almost seemed as if the author praised the benefits of PC therapy on every page.  This further motivated me to try it. 

If you read the Internet’s claims about what PC can do for people with complex chronic illnesses, they seem far too good to be true.  According to various sources, it reportedly detoxifies, repairs nerve damage, boosts the methylation cycle, repairs mitochondria, clears oxidative stress, repairs intestinal damage and treats ulcerative colitis, improves memory, and many other things. 

Again, this is all “…according to sources.”  It’s often difficult to verify the trustworthiness of these authorities. 

My Past Dalliance With a Little Bit of PC

Back when I was experimenting with Dr. Yasko’s methylation protocol, one of the few supplements I felt was truly helping was a phospholipid complex which included PC along with two other lipids:  Phosphotidylserine, and Phosphotidlyethanolmine.  It was called “PS Complex” or sometimes “PS/PS/PE/.”  It was actually one of the few Yasko supplements (a “short route” supplement) that I felt truly helped me.  Unfortunately I stopped taking it during a time early in 2015 when I was in a sort of semi-remission, not realizing that I may have reached that state of near-remission because of the supplements I was taking at that time, including PS Complex.  The dose of PC in Yasko’s PS Complex is much less than the standard dose of PC.   

Hello Again, Old Friend

With all of the above in mind, I decided it was time to try PC.  Then came the shocker:  it costs about $90 per bottle! 

Granted, there are less expensive brands on the market, but the consensus of Phoenix Rising users seemed to be that there are only a few brands of PC that are of truly good quality.  The brand my doctor recommended was one of them:  I took the liquid BodyBio version. 

My doctor told me to mix the liquid PC into a smoothie or other strong-flavored drink.  I don’t have the time or patience to make a smoothie every day, so I decided to take it straight.  It tastes like motor oil, but for some strange reason I enjoyed the taste.

My complaint about most ME/CFS supplements is, if they make a difference for me, the difference is often subtle. Sometimes, I am not entirely sure if any individual supplement, alone, is helping.  Often I continue to take a supplement anyway because (a) many other ME/CFS patients report that the supplement is beneficial, (b) the science says it should be beneficial based on my symptoms, and (c) my doctor recommends it. 

PC was not in this category. 

Beginning the next day, I began to experience very strong signs of a Herxheimer reaction and possibly over-methylation: Brain fog, muscle twitching, achy kidneys (nephritis), and stronger-than-normal inflammation.  Still I persisted with the PC for another five days, hoping (stupidly) that I could push through the Herx. 

On day six I stopped taking the PC, and the brain fog went away almost immediately.  However, the nephritis and muscle twitching still continue as of today, four days after halting the PC experiment.  Those two symptoms seem to be improving slightly with each day but still I’m astonished at how powerful the PC was.  My assumption is that the PC set into motion a detox event that my body is still struggling to clear. 

After experiencing such a strong reaction to PC, I started looking deeper into what other patients were reporting about PC on various forums.  (I probably should have done this before taking PC).   Based on forum posts, my rough estimation is that about two-thirds of the patients who’ve reported on their reaction to PC state they had strong negative reactions, many of them consistent with what I experienced.  But those who report positive effects seem very insistent that PC is a key to improvement

There’s one important thing I haven’t mentioned yet:  on day 3 of the PC experiment, among all of the negative reactions, I had a day of extremely clear headedness, almost bordering on a euphoric feeling.  Despite the nephritis, my energy was unusually high that day.  In fact, I had so much energy and mental clarity that I was awake most of the night as the energy burst continued.  Also, I've barely had any shortness of breath or post nasal drip since my first dose of PC.  Strange...

Going Forward

Based on all of the above, I believe there’s great potential in the therapeutic value of PC if I can hone in on the correct dose, correct titration, and perhaps the correct combination with other supplements for my body chemistry.  Maybe the solution is to go back to the more mellow “PS Complex” that I had success with in 2014 and 2015.  Of course, my natural inclination is to see how far I can take the benefits of PC, so I may experiment more with the pure PC liquid.  After all, I have a $90 bottle gathering dust.

Friday, January 22, 2016

This guy nailed the Th1/Th2 dominance question...

I've never come across his blog before (because it's not specific to ME/CFS), but a blogger named Joseph Cohen of SelfHacked did a pretty darned masterful job of explaining the differences between Th1 dominance and Th2 dominance, and the different strategies that that can be used to counteract each.

When you think about it, it can be absolutely critical to identify which dominance you have because your whole treatment plan could potentially be counter-productive if you assume incorrectly.  I have always assumed I am Th2 dominant because (a) my understanding is that most ME/CFS patients are, and (2) Dr. C told me so.

As I started reading the article, I actually recognized aspects of myself in both profiles, Th1 and Th2. For instance, I do have arguably low T3 thyroid hormone despite otherwise normal thyroid tests.   But in the end, I decided I'm still pretty sure I'm still Th2 dominant.  The clincher is that low IgG subclass 3 is a hallmark of Th2 dominance, as is low Natural Killer Cell function.  That's me, exactly.

In any event, if you want to increase your understanding of this tricky concept, here's a great read:

Wednesday, January 20, 2016

Allergist says my nasal passages are "incredibly inflamed."

I've been writing about my efforts to understand my shortness of breath (SOB) and post nasal drip (PND), which always wax and wane together.  I had recently come to the conclusion that both symptoms are caused by inflammatory cytokines.  This would essentially mean that there is nothing I can do about the SOB/PND except for the usual, marginally effective measures: paleo diet, immune modulating supplements and (sometimes) drugs, lifestyle management.  These of course never make the problem go away, they simply make the problem more manageable.

My pulmonologist recommended that I see an allergist as a last resort.  I made an appointment with the allergist but nearly cancelled after wondering: what's the point?  In the end, I decided to keep the appointment.  My reasoning was: if the allergist can identify even one environmental trigger (such as, for instance, dust), then there's one more piece of information I can use to help reduce incidents of runaway inflammation.  It certainly won't solve all my problems, but it would be one more small piece of the puzzle.

The allergist I visited yesterday (Dr. L) was very impressive.  You know that feeling when you meet with one of those rare doctors who seems equally as invested in your health mystery as you? That's a good feeling.  She's been practicing for less than five years.  Sometimes I find that the younger doctors, while less experienced, are the best because they finished medical school more recently.  Medical knowledge is evolving so rapidly that doctors who have been practicing more than about 15 years are often clueless about chronic complex conditions.  Plus, younger doctors haven't yet been worn down by years and years of listening to people complain (can you imagine?). They still have some empathy left to give.  I don't mean this to sound age-ist.  There are some wonderful older doctors too.

Dr. L spent about a half an hour with me.  She said my nasal passages were "incredibly inflamed." Her preliminary theory is that the inflammation (the cause of which is still to be determined) is producing mucous, which in turn drips down my throat and causes the SOB.  I'm not so sure about the mucous being the cause of the SOB (highly questionable), but at least she's the first doctor who has attempted to tie the two symptoms together.  Because, to me, they are clearly related.

I'm supposed to come back for a "scratch test" next week.  I hope this test will explain why I seem to react to my car.

Tip for FIR sauna users: always pre-heat

I continue to use my Far Infrared (FIR) Sauna 2-3 times per week.  I feel fairly confident it is helping detoxify my body. One thing I'm absolutely certain about:  it improves my sleep.  I always have a better night's sleep after a sauna session.

Yet there was a mystery I could never solve: why do I sometimes emerge from the sauna drenched in sweat and other times I barely sweat at all.  The times when I came out dripping with sweat were the times when I felt better and slept better afterwards.  Thus I felt it was important to figure out how to have the full-sweat experience every time.  Up until recently, my leading theory was that a low-sweat sauna session meant I was dehydrated.

I finally figured out recently that there is a correlation between the times I pre-heated the sauna and the times I sweated more in the sauna.  I vaguely recall that when I purchased the sauna, the manufacturer told me to heat it before getting inside.  As the years went by, when I didn't have the patience to pre-heat the sauna, I started getting inside as soon as I turned it on and then I would wait for it to heat up while I was inside.  I would add time to the end of my sauna session to make sure I still got a full half hour of maximum heat.

Just as they say frogs don't know they're being boiled alive if you start them in cold water and slowly increase the temperature (I wouldn't know, I've never cooked frog), the human body seems much less reactive to heat if you bring the temperature up slowly.  Based on my experience, it's critical to getting the most out of my FIR sauna to "shock the system" by getting into an already hot sauna.

Friday, January 15, 2016

Next iOS update will include nighttime amber-shift

[I originally posted this on Phoenix Rising, but I felt it was important enough to spread the word here as well...]

Apple device users: For those of us working on sleep hygiene, and for those who know that the blue glow of our devices shuts down melatonin production, the next iOS update, coming soon, will include a setting that shifts your screen from the usual bluish-white light to amber light at night.

Up until now, there's only been the Lux app, which was strictly for jailbroken iPhones and iPads. I never wanted to jailbreak my devices so I settled for not using my devices at night. This is a much better solution. 

Wednesday, January 13, 2016

I now know what's causing my shortness of breath

I've been writing recently about my efforts to figure out what's causing my debilitating air hunger, which is always accompanied by post nasal drip (PND).  (Here and here.)  It comes and goes, but over the last two months or so, I've noticed that it has become more permanent.  I no longer get any days off -- it is there every day.  Now its only a question of severity.

I know now what's causing it: inflammatory cytokines.  I'm reasonably certain of that.

The pulmonologist found no problems with my lungs or heart.  I'm still pending an allergy evaluation (next week), but I doubt that will find anything.

Here's what I know:

Things that make it worse:

Exertion - Even walking now seems to trigger it.  A flight of stairs: definitely.

Coffee and other stimulants - The strange thing is, even decaffeinated coffee triggers it.  I believe that even the small amount of caffeine in decaf coffee is sufficient to make it worse.  Much worse actually.

My car - This is the one that doesn't quite fit with the others.  My first thought was, maybe I'm reacting to something in my car, particularly in the ventilation system.  Other times I've thought, maybe it's simply because every time I'm in my car, my presence there was preceded by exertion: gathering my things and walking to the car.  But I don't think that's the explanation.

Things that make it better:  

Nothing, except avoiding the things that make it worse.  I've tried Monolukast, inhalers, tea, mold and chemical avoidance, diet, anti-inflammatory drugs, Azelastine, and Flonase.  None of that makes a difference.


My conclusion is: This has to be inflammation triggered by cytokines.  We've ruled out nearly everything else.  Exertion and stimulants are two factors known to trigger an inflammatory response in people with ME/CFS. The car as a trigger is less easy to explain, but I feel there may be an environmental trigger to the inflammation as well.

I've been ill with ME/CFS for 4.5 years, generally the time frame when, as studies have shown, a person's cytokine profile changes.

Shortness of breath was a major symptom of my acute phase in 2011, but then it went away for the most part, for the next 3 years.  During that time, it was only sporadic, fairly rare, and not too severe when it did come.  It was not accompanied by PND like now.  I enjoyed a higher than average exertion tolerance compared to some other patients during that period.  Basically, I was able to do most day-to-day activities without fear of triggering a major crash.  (I dealt with a host of other problems, but hair-trigger SOB wasn't one of them.)  I wasn't like a normal person who could go running or play basketball, but I could climb a flight of stairs and feel OK generally.  That may be changing now.

Some people say that SOB in ME/CFS is not a matter of lung function or blood oxygen levels (my blood oxygen levels are fine) but rather the body's inability to use the oxygen efficiently.  I don't think that's the problem in my case because the SOB always gets better and worse in lock step with PND.  It makes more sense to me that inflammatory cytokines would be causing lung inflammation and at the same time, causing my sinuses to produce mucous.  The inefficient use of oxygen theory doesn't explain the PND.

Tuesday, January 12, 2016

About that Probiotics Cure....

There's an article being shared around the ME/CFS blogosphere about a patient who essentially cured herself by deciding, after some research, to put herself on a regimen of high dose probiotics (about 300 billion CFUs per day.)  It's pretty exciting if her results can be replicated.  Even if one other person can replicate these results in themselves, I will be fairly ecstatic.  Although, my excitement is tempered by the thought: someone must have tried this before, right?  If we've never heard about anyone else being cured this way, maybe it's because it hasn't worked for others.

This article came to my attention at an interesting time for me because, two weeks ago, I decided to start ramping up my intake of probiotics for two reasons:  (1) I continue to see a steady flow of new articles and research about the importance of gut flora to overall health, even from mainstream media (i.e. non-ME/CFS media), and (2) I read the blog of another ME/CFS patient who has had success taming candida with about 60 billion CFU's per day.

In the past, I had always found that I had trouble taking more than about 10 billion CFU's per day.  I would feel inflamed and slightly flu-ish.  But this time, using different brands and strains of probiotics that I selected more carefully, I have not had any trouble titrating up to 40 billion CFU's per day.  So far there's been no dramatic improvement, but I'm hopeful.  I don't think I will go as high as 300 billion like the author of the article, but I'm taking it day by day at this point.

Saturday, January 9, 2016

Pulmonologist was a bust

A few weeks ago, I decided to take another run at finding answers for and getting relief from my shortness of breath.  My worsening shortness of breath and post nasal drip has led to a significant decrease in quality of life over the last 6 months.  

Several of my fellow patient-friends predicted that the pulmonologist visits would be a waste of time, and they were right in the end.  On some level, I knew that they probably would be correct, as I've never had much luck with  non-ME/CFS specialists.  On the other hand, patients say you should never ignore new or worsening symptoms just in case your ME/CFS has lead to another disease.  For instance, with our weakened immune systems, we are more susceptible, statistically, to certain types of cancer.  So I went anyway.

The pulmonologist (Dr. S) ordered a CT scan (without contrast) and an echocardiogram, thinking that perhaps my slight pectus excavatum was pushing on the pulmonary artery.  My heart and lungs checked out fine on these tests, plus the Monolukast prescription turned out to be ineffective.

As one last effort, he sent me away with a 14 day sample of an inhaler, noting that I had performed 9% better on a spirometry test after trying an inhaler.  I suspect the 9% improvement was due to vagaries of the testing conditions, but the sample is free so I will try it anyway.  He prescribed an Ellipta inhaler.  Today, as I write this, I am on day 1 of the inhaler experiment, and am breathing well, but it's far too early to draw any conclusions.

Finally, he referred me to an allergist for a full allergy evaluation.  I'm going to follow through with that evaluation.  Again, it probably won't lead to any new answers, but I have to try.

Dr. Cheney's protocol - some thoughts

Health Rising has a 3-part article from a patient who blogged about Dr. Cheney's ME/CFS protocol - at least the version he's offering to this particular patient.  (Based on the accounts we read from his patients, Dr. Cheney's protocol always seems to be evolving as the good doctor searches for the ultimate combination of treatments.)

I'm posting a link to the 3-part article (below) because it dovetails with something I've been thinking about recently:  I must find a way to be more comprehensive and systematic with my ever evolving treatment plans.  I work with two doctors who want to go in different (not necessarily inconsistent) directions with my treatment plan.  I also use a handful of treatments that I've simply picked up from "the community."  With all this disparate input into my treatment regimen, I need to make sure that these treatments are all consistent with one another and that I've got all my bases covered.  

I think most of us recognize that ME/CFS is a multi-system disorder and that, in the absence of a cure, we end up treating each broken system as best we can.  But when treating different systems, seeing the "big picture" is one of the greatest challenges.  If you have doctor like Cheney who sort of specializes in seeing the big picture, then you're ahead.  But my two doctors have more narrow focuses, so the job of seeing the big picture falls to me.  

In short time, I'm going to post my new plan for making sure my treatments are consistent and all my "broken systems" are being addresses with at least one treatment that is consistently recognized as effective by ME/CFS doctors and the community.  Until that post, here is the 3 part article I referred to above....

Saturday, January 2, 2016

2015 was first year my health regressed

                                                          Quantifying the Regression

Ever since I first became ill in 2011, I've been keeping track of my daily health rating on a chart.  I try to use certain benchmarks to ensure that equivalent level of health get the same rating from month to month and year to year.

At the end of each month, I calculate an average for the month, and and the end of each year, I calculate an average for the year.  I have steadily improved with each year from 2011 to 2014, with a particularly large improvement in the average of 2014 over 2013.  However, 2015 was the first year that had a lower average than the previous year.

Overall, this result isn't too surprising.  When I first became ill in 2011, it felt like there was nowhere to go but up.  (In reality, that's not completely true -- many of my fellow patients have shown me that I could be much worse.)  But the point is, the more one improves, the less room there is for additional improvement.  I knew that eventually I would have to, at the very least, level out or regress slightly.

The good news is that 2015 was still my second best year out of the 5 I've recorded, and the average was much closer to the 2014 high than the second highest year of 2013.  So this is all good news if I can keep from backsliding further.

Explaining the Regression

Explaining the regression is more difficult than quantifying it.  Until April, the year of 2015 was on pace to be an even better year than 2014.  March, 2015, was my best month ever.  I almost felt like a normal healthy person that month.  I was beginning to think that I would soon be considered "in remission."  (By some people's standards, I already am in remission, but not by mine.)

In April, my health started to regress.  Two things happened in or around that time frame.  One was that I began to cut back on some of my supplements, at the recommendation of my new doctor.  The other thing was that I had a stressful arbitration at work.  Is is possible the stress from the arbitration triggered the regression?  I doubt it, but it's a possibility.  

My symptoms seem to evolve slowly over time.  In 2014, my main non-PEM symptom was groin pain.  That issue was mostly resolved by early 2015.  In the second half of 2015, my issue became chronic shortness of breath (SOB) and post nasal drip (PND) (always together.)  Another explanation for the lower rating this year might be that I couldn't ignore the SOB as easily as the groin pain.  With the groin pain, I often wondered if it was even related to my illness.  Some days, even with significant groin pain, I rated my health highly.  SOB on the other hand, more directly affects one's daily activities, so it was more likely to reduce my daily rating significantly.  

I continue to explore an explanation for this SOB and PND through a pulmonologist.  I will update those results in the coming weeks.  

Where Do I Go From Here?

I feel perhaps more confused now than I have at any time since my "acute phase" in 2011.  I have a diagnoses of Lyme disease, which is questionable.  There are many different directions I could go from here, but I don't know exactly how to proceed.  In November, I started adding back in some of the supplements that I had cut out earlier in the year, particularly ImmunoStim (an immune modulator) and B Complex, among others.

My plan is to continue to try to confirm or rule out the Lyme diagnosis.  At the same time, I will try the herbal tinctures my doctor recommends.  The question is: how long do I give these Lyme treatments when I'm not totally certain Lyme is my problem?  To be honest, I don't have a plan for that right now, but hope to have one by the end of January.  In other words, my only plan right now is to make a better plan.