What's In A Name

I'm not treading any new ground here, but I was reflecting today on what a truly unfortunate label "Chronic Fatigue Syndrome" is.  I came to the conclusion that calling ME "Chronic Fatigue" is such a colossal misnomer, it would be like calling Narcolepsy:  Chronic Blinking Syndrome.

New Blood Tests Clarify My Diagnosis/Treatment Plan

About 2 weeks ago, I received a copy of my most recent blood work.  This was the blood panel that was ordered by my ME specialist and which finally tested for all of the ME "usual suspects," including hormonal and vitamin deficiencies.  Now I've had a chance to review those results with my doctor and create a revised treatment plan.

The good news was, I tested negative for some of the "usual suspects," like the CMV virus.  My adrenals are perfect, my insulin levels are nice and low, and hemoglobin was excellent.  So there's a few less things to worry about.

Now, here's what's ailing me (below), and what we're doing about it.  I've placed them in rough order of severity.  Keep in mind, the root cause of these systemic dysfunctions is the "blown fuse" in the hypothalamus, according to my doctor.  Since there's no way to directly reset the fuse, the best known treatments are to fix the resultant imbalances.

Viral and Mycoplasma Infections  I tested positive for IgG antibodies for both HHV-6 and Mycoplasma infections.  The Mycoplasma numbers were particularly high (3.08, when normal is below 1.10).   Previous tests also showed positive IgG for Epstein Barr Virus.  IgG antibodies are typically deemed only to be evidence of past infection.  However, the conventional thinking among ME experts is that, when the immune system is weakened as it is in ME patients, these viruses reactivate.  There is no way to test for reactivation, although Dr. Tietelbaum's book cites to several clinical studies that he says prove this point.

Dr. W offered to prescribe Valtrex, which he said can be effective against all of these infections, but I delayed that decision for now for a couple of reasons.  For one, Dr. Teitelbaum's book says that HHV-6 is resistant to Valtrex, and that Valtrex is not effective in treating ME.  My doctor obviously disagrees with this.  I'm keeping it in mind as a possibility for later.

Candida Albicans.  This is the intestinal yeast overgrowth that I mentioned in yesterday's post.  I tested positive for all three types of antibodies: IgG, IgA, and IgM.  Whereas the normal range is less than 1.0, my antibody levels were 1.3, 3.7, and 1.4 respectively.  The treatment is to continue with a low carb/no sugar diet, and take 1 month's worth of prescription Diflucan to reign in the infection.

Unfortunately, once you have Candida infection in the intestines, you are always very susceptible to it returning.  (One source I read said that the Candida grows roots in the lining of your intestines, so even if you kill the yeast, the roots lay dormant, ready to regrow the yeast if you feed them with sugar! Yikes!) So even after we get it under control, I will not be able to drink alcohol or eat sugary foods again without reactivating it.  But, if I get my health back, I'll count myself lucky.

Vitamin D3 deficiency  The lab's quoted "normal range" is 30-100 ng/mL.  (I discussed the controversy and problems with "normal ranges" in an earlier post).  Mine was 40 ng/mL.  My doctor said a healthy level for someone my age should be in the 60-100 range.  I had been taking 3-4,000 IU's of D3 supplements per day, and noticing an improvement in my shortness of breath.  Dr. W upped the dosage to 8-10,000. We'll test the levels again in two months.

Dr. W was emphatic that raising my Vitamin D levels is a critical component to recovery.  He says raising my D3 to optimum levels will jump start my immune system and raise my energy level significantly.

Pregnenolone  Pregnenolone is another hormone that is critical for energy and memory.  My levels were  extremely low: 23 out of a listed range of 13-208.  Dr. W wants to bring me up to around 130, so he prescribed 100mg/day of a Pregnenolone/DHEA supplement.

Thyroid.  We had already determined that my thyroid levels were low from my past visit to Dr. W.  The Thyroflex test measured the levels in my tissues, which were low.  Plus, my hands and feet and been icicles ever since I got sick.  These blood tests confirmed low-ish T3 levels, and high Reverse T3 levels.  Dr. W prescribed me T3 supplementation, starting with 10 mcg/day, and escalating to 25 after 10 days.

Testosterone.  I was a little surprised to learn that he thought my Testosterone levels are low.  But I'm so manly, I thought.  But apparently this hormone is responsible for a lot more than libido and muscle strength: things like brain function, energy level, and heart function.  Dr. W perscribed a cream that I am supposed to rub on my skin once a day and it absorbs topically.

Natural Killer Cells  Finally, Dr. W had ordered a test of my Natural Killer Cell (NKC) activity.  NKC's are a type of white blood cells that are critical for immune function, and are usually found to be low in people with ME.  Unfortunately, the lab performed the wrong kind of NKC test and Dr. W was unable to interpret the results.  We will redo the test correctly in two months.

But for now, the plan is to add these treatments to the supplements I was already taking and see if I can manage some improvement.  I've already improved somewhat from the existing regimen plus diet changes.  I remain slightly skeptical that all of the above is necessary, but if/when I improve, I can experiment with removing some of these treatments one by one to determine what I truly need.

Stomach Medication = Candida Overgrowth

In my 12/20 post, I discussed my theory that years of acid reducing stomach medications may have contributed to my ME.  It turns out I was right.

Yesterday I visited my ME/CFS specialist (Dr. W) to discuss the results of a recent blood panel.  Of the several infections contributing to my ME, the worst, in terms of antibody titers, was Candida Albicans.  Candida is yeast that often grows out of control in the stomachs and intestines of people with ME.

After the appointment, I hit the internet to learn more about the causes and treatments for Candida overgrowth.   One of the top Google links was this page, about the risk of "proton pump inhibitors" (acid reducing stomach medications) leading to Candida.  Of particular interest was the following:

"...A significant lack of stomach acid may also result in proliferation of Candida and other yeast fungus organisms...

Treatments to Avoid
....Of the two varieties of stomach acid suppressors, proton pump inhibitors are the most potent. It takes only one of these pills to reduce your stomach acid secretion by 90 to 95% for the better part of a day....Before considering an antacid, I urge you to look up the possible adverse side effects of these and other drugs, because many of them can be quite serious." 

I wish I'd known this a few years earlier.

It's hard not to feel as though my medical care providers failed me, especially the doctor who continued to renew the prescription for 5 years, and the pharmacy for doing the same.  It's an example of why you have to be your own gatekeeper and not rely completely on your doctor's advice.

Donating To ME Research

On the heels of my last post, discussing why ME/CFS research is behind the times, I decided to donate funds to an ME/CFS research laboratory.   (Unfortunately, the best time to do this would have been last week, which would have allowed me to deduct the donation from my 2011 taxes. But the important thing is to support the cause.)

The question is, who to donate to?  What institutes are doing the best research?  I had only a vague sense, so I decided to post the question to the community at Phoenix Rising.  The responses were very interesting.  One poster noted that there are five research institutes, all of which are relatively new, and all of which are doing promising work.  There is also some collaboration between the five, which is often they key to progress.

In no particular order, the institutes are:

-Dr. Nancy Klimas' institute at Nova South University
-Dr. Enlander's Mt. Sinai ME/CFS Center in New York
-Dr. Peterson's Simmaron Research Center at Bond University, Australia
-Chronic Fatigue Initiative (CFI), which funds other researchers
-Dr. Bateman's OFFER institute at the University of Utah.

After researching these five institutes, I've decided to donate to CFI, although I may revisit the decision next year when it comes time to donate again.

My decision was based on CFI's broad range of initiatives.  They fund CFI research on a number or fronts, including a project called Cohort Recruitment which seeks to address the problem of the tainted research pool that I discussed in my last post.  This project involves collecting a core group of 200 research subjects who are confirmed to have true ME/CFS, to provide researchers with a pure sample group.  They are also creating a CFS "bio bank" of blood and tissue samples from the Cohort participants.

The only problem is, while the CFI websites states that they are funded by private donations, it does not specify how one can donate.  I've written and email to CFI and will update this information later.

1/24/12 Update:  I never received a response from CFI, so I'm moving on to Plan B.

Why is ME/CFS research so far behind the times?

Why is ME/CFS research and awareness so far behind the times?  The most oft cited answers to this question are (1) it is not life threatening and thus, not scary enough to grab attention, and (2) the name "chronic fatigue syndrome" downplays the seriousness of it.  Both are true, but there's more to it.  It's also a problem rooted in a muddled population of test subject.  

For more than 50 years, ME/CFS has been a "wastebasket diagnosis"--a category that doctors could dump any hard-to-diagnose patients into.  Health insurers offer doctors strong incentives to diagnose patients as cheaply as possible.  They place caps on the amount of blood tests a doctor can order at one time.  When doctors (and patients) get frustrated after a few rounds of negative blood tests, there's a temptation to give up and "just call it CFS," especially if the symptoms involved fatigue of any kind.

There are dozens of diseases that count fatigue as a symptom, and only one of them is true ME/CFS.  A short list of these other diseases would include Lyme disease, hypothyroidism, various auto immune diseases, Addison's disease, narcolepsy, and various psychological conditions.  There are many, many others.  Some believe that even "true ME/CFS" is really 2 or 3 separate conditions that are still being lumped into the same category.  

Some falsely diagnosed patients eventually go on to discover the true nature of their illness later in life.  Others, undoubtedly continue believing that they have ME/CFS for the rest of their lives.

Now, imagine the chaos that all these false diagnoses must have on any attempt to research ME/CFS.  A research laboratory hires 100 "CFS patients" to conduct a study on a new treatment.  The lab finds, after a year of experimental drug treatment, that their drug is effective for 65% of patients, but has no effect on the other 35%.  Unbeknownst to the lab, it is because 35% of the participants don't really have ME/CFS.  They think they do, but they don't...

A 65% success rate isn't going to grab any headlines in Science Magazine.  It's not likely to snag much research funding, and it certainly isn't going to gain FDA approval for the treatment.  Research money follows successful trials.  Scientists follow research money.  And true progress follows from devoted scientists.   

I don't know if this situation will improve over time.  Certainly, the forums are alive with ME/CFS patients who are attempting to "right" these wrongs on political, financial, scientific and legal fronts simultaneously.  But in the mean time, we are left to our own devices.  There are only a handful of institutes in the world devoted to studying ME/CFS, and they are mostly privately funded by ME/CFS sufferers.  

If one is determined to treat his/her ME/CFS with prescription drugs, the only choice may be to experiment with drugs that have only been approved to treat other conditions.  There are many examples, but they include Valcyte (approved for CMV virus), Ampligen (an immune booster), Immunovir (another immune booster), Rituximab (a cancer drug), and GcMAF (another cancer drug).  The point is, ME/CFS research is so far behind the times due to, in my opinion, all of the false diagnoses tainting the research data, that people with true ME/CFS are left to experiment on their own, without the benefit of (much) reliable research data.  

[Note: I would normally annotate my posts that summarize research, but this post is the product of several months worth of on-and-off research from too many sources to remember.  I will try to revisit this post and update it with annotations at a later time.] 

Things That Make It Better

This may seem like a strange topic to be posting after a crash, but bear with me.  There's no doubt that, overall, I have improved over the last 4 weeks.  While my "highs" aren't any higher (there seems to be a ceiling at about 90% that I can never break through), my "lows" haven't been as low or as long.  Before this period of improvement, I had about as many "low days" (which I define as below 75%) as high days. I would crash for a week at a time, before slowing climbing out of it.  For the last month, I've been at or above 75% the vast majority of the time, with crashes lasting only a day or two.  While it's still early, I am hopeful this trend will continue.

Unfortunately, it's difficult to pinpoint what, exactly, is helping me.  Beginning about 8-12 weeks ago, I began taking a raft of dietary supplements, adding still more in two or three waves.  So I cannot isolate one or two supplements as the source of my improvement.  But, if you believe my doctor and Dr. Teitelbaum's book, it's the combination of multiple supplements that benefit ME patients the most.  

Without further adieu, here is my updated list.  Note, this list has changed since my 12/18 post.  Anything marked with a * is something I've added to my doctor's recommendation based on my own personal research.

-D-Ribose – 5000mg, 2x day; 
-Coenyme Q10 – 200 mg day; 
-Multivitamin  2x day; 
-Vitamin D3 – 3-4000mg a day (for shortness of breath)*; 
-Acetyle L-Carnitine 650mg 1x day.*; 
-Zinc lozenges as needed*; 
-Magnesium Malate 300 mg*; 
-Immuno Stim, 3 capsules 2x day; 
-NT Factor by Researched Nutritionals 3 capsules 2x/day; 
-Liquid Vitamin B12 (sublingual drops), 1,000-1,500 mcg/day*; 
-Pro-Biotics, 1 capsule, two hours before and two hours after any meal; 
-Melatonin as needed for sleep. 
-Low carb diet with no processed sugars or processed foods.  

Things That Make It Worse: Altitude and Air Travel

I'm starting a series of posts tracking what makes my ME symptoms better and worse.  While I've discovered a number of things that have marginally improved my symptoms, today I'll focus on what makes them worse.

I've discovered that high altitudes and air travel seem to worsen my symptoms.  (I say "seem" because you can never be sure after one or two experiences.  There are too many other variables).

Two weeks ago, my wife and I took a trip to a family cabin in the nearby mountains, at an altitude of 5100 feet (554 meters).  Before we embarked, I was leery of the possible effects of the altitude, because one of my symptoms is shortness of breath.  I wondered how much worse the shortness of breath would be at high altitude.  On arriving at the cabin Friday night, I felt great, and wasn't fazed by the process of unpacking the car and lugging heavy bags up a steep flight of stairs.  I felt more-or-less normal that first night.

But by mid-morning the next morning, I started to crash.  Nausea, fatigue, light headedness and shortness of breath all came on strong.   By early afternoon, it was obvious that we needed to cut the vacation short and drive back down to sea level.  The strange thing is, I was feeling fine again the next day.  This made me fairly certain that the altitude caused the crash.

This past weekend, we flew by airliner to San Francisco for the Christmas holiday (a short 1 hour and 10 minute flight each way).  On the way to San Francisco, once again, I felt fine, but crashed the following day.  Again, however, it was a short crash, and I improved by the second day.  Unfortunately, the second day involved a return trip home.  I think it was these two trips in three days that ensured a more severe crash.  It could be the effects of the rapid altitude/pressure changes, or it could be the exposure to the notoriously germ-filled environments of airplane cabins and airports.  I'll never know, but I started going downhill yesterday and am much worse this morning.

Whatever the exact cause, I'll need to think carefully before planning any air travel in the future.  At the very least, I know that two flights in three days is probably too much.