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, September 30, 2012

Far Infrared Sauna for ME/CFS Treatment

What if you could purchase a magic button for a few hundred dollars?  When you pressed the button it would give you about 50% more energy for a couple of hours after, then would make you fall into a restful sleep?  Would it be worth the price?  For me, that's what my portable far infrared (FIR) sauna has become.

Long term effects: still to be determined.

The decision to purchase an FIR sauna didn't come easy.  I felt I was already chasing a number of treatments and was reluctant to add yet another.  But it was one of those situations where I kept being confronted with people touting the benefits and it became hard to ignore.  First, one of my CFS doctors (Dr. W) had been urging me to buy a FIR sauna for several months.  He said that many of his clients  cite their FIR saunas as their most effective treatment.  Then I kept stumbling upon message board threads in which other PWMEs praised the benefits of FIR saunas.  Then a personal friend recommended it.  So I finally decided to take a chance.

Here's what I've figured out about FIR saunas so far:

What is a portable FIR sauna? 

Infrared saunas are simply saunas that generate their heat in a different way, which proponents claim heats the body at a deeper level.  As Wikipedia describes it: 
An infrared sauna uses infrared heaters to emit infrared radiant heat which is absorbed directly into the human body, unlike traditional saunas which heat the body indirectly via air or steam.
In the case of my FIR sauna, I'm not sure exactly how it works.  All I know is that I plug the thing in, and the heat just radiates right out of the walls of the sauna.  Within a few minutes of plugging it in, it is fully heated.

Most FIR saunas on the market are of the portable variety, meaning they collapse after use and can be stored under a bed or in a closet.  Within the portable category, there are several sub-varieties.  There are quite a few lay-down varieties.  One type is simply a mat that you lay on with a blanket over you, like this.  Another lay-down type consists of a semi-cylidrical dome that the user lays inside, like this.

Another common type is the pop-up tent style, where the user sits in a small camping-style folding chair inside a pop-up tent with a PVC frame.  The user's head and arms stick outside of the tent so he/she can watch TV or read a book.  This is the type I have.  Here's a picture of someone using the exact make and model that I have.

What Are the Claimed Benefits for PWMEs?

There are a number of claimed benefits of FIR saunas for PWME's and Lyme patients.  The most common claim is, given that the detoxification and methylation pathways are blocked in PWMEs, the sauna provides the body an alternative method of releasing toxins -- by sweating them out.  In other words, the normal detoxification pathways are broken, so the sauna opens up a bypass route.  

The manufacturer of my FIR sauna also claims that the sauna raises one's body temperature not only during use but for hours afterwards, creating a sort of "artificial fever," which helps a PWME's weakened immune system battle pathogens.  I must admit, this claim made a certain amount of sense to me.  I've heard the theory that viral-induced ME/CFS tricks the body into lowering it's temperature, making it more difficult for the immune system to fight the virus with heat and fever.  The FIR sauna could be a way of artificially raising the body's temperature, at least for a few hours a day.  

I've experimented with this theory by taking my temperature using an oral thermometer both before and after my sauna sessions.  Generally, I've found that the sauna raises my body temperature by about 1.0 degree.  Over the next hour and a half, my temperature gradually returns to pre-sauna temperatures.  Is this temporary increase in body temperature enough to substantially help the immune system?  I haven't found any answers to this question yet.  

A final benefit worth noting is the potential cancer-fighting aspect.  Since many PWME's have low Natural Killer Cell function, and therefore lower defenses against cancer, we might need a little outside help.  According to Wikipedia
On the other hand, hyperthermia generated by infrared saunas may kill or weaken tumor cells, and is controlled to limit effects on healthy cells. Tumor cells, with a disorganized and compact vascular structure, have difficulty dissipating heat. Hyperthermia may therefore cause cancerous cells to undergo apoptosis in direct response to applied heat, while healthy tissues can more easily maintain a normal temperature. 
Note: the manufacturer cautions that the user must be careful to drink a lot of water to replace the liquid that is sweated out, and possibly replace minerals as well.

My Experience with FIR Sauna 

First of all, I can't yet tell if the sauna is helping me permanently heal and recover.  I may need to wait two or three more months to make that determination.  But, I can tell you that it's already been worth the price just for the daily boost of energy it provides.

I try to use it every day, but in reality, I end up using it about 4-5 days a week.  I start off by plugging the sauna in and using the attached remote control panel to set the heat setting to the maximum of 5.  I place the remote in it's designated pocket.  Then I make sure the TV remote is neatly tucked into the other front pocket where I can reach it.  I strip down to my boxers, climb inside, and sit down in the camping chair.  I zip the sauna closed so that only my head is sticking out.  Then I use the remote control to set the time of the session to the maximum duration: 30 minutes.  Only my head is outside of the sauna, poking out above a neckhole in the top.

Occasionally I slip my arms out through the arm slits to change the TV channel, but other than that I just relax and enjoy whatever's on TV.  For the first 10 minutes, I don't sweat much, as my body temperature slowly rises.  But during the last 20 minutes, I am sweating constantly and profusely from seemingly every pore in my body.  About every 30 seconds, I feel of bead of sweat give in to gravity and run down my torso, arm or legs.

Despite the high temperature, somehow this isn't as unbearable as the heat generated by traditional saunas.  I think this is because it helps to have my head outside of the sauna where it can stay cool and comfortable.  On the other hand, Wikipedia says: "This is because far-infrared rays do not heat the air inside the sauna, but they still heat the body."

By the time I climb out of the sauna after 30 minutes, I am soaking wet, as if I've just come out of the shower.  My boxers could be wrung out.  If my wife is in the room, I'll threaten to wrap her in a bear hug, which makes her squeal and run away, much to my amusement.  I then rinse off in the shower.

For the first couple of hours after a sauna session, I feel a comfortable burst of energy, comparable only to the feeling I used to get after a jog or a workout.  You know, the feeling where you feel calm but somehow energized and lucid at the same time?  In fact, it's exactly like that old post-workout feeling -- I can't distinguish it.  It feels like my circulation is finally working again.  That's why I said above, it's like having a magic button that I can press to reset how I feel.

Within a couple of hours after the session, I start to feel sleepy...just like after a workout.  Typically, I've found that I fall asleep easier and and sleep sounder after a sauna session.

Just to be clear, I don't have any affiliation with any of the sauna manufacturers.  I've simply found FIR saunas to be one of my more effective treatments and wanted to spread the word.  In fact, any sauna manufacturers who try to spam my comments section will not only be deleted but made an example out of!

Tuesday, September 25, 2012

Are my strange neuro symptoms tied to diet?

Every few months, I go through a period of 2-3 days where I get all sorts of strange neurological symptoms. I feel totally uncoordinated. Typing becomes very difficult. Walking becomes dicey. I feel unbalanced. Muscle twitches and numbness comes with it too.  I feel like I could fall at any time while walking.  It is a very difficult feeling to describe, but other PWMEs say they know exactly what I am talking about.  

I'm getting over one of these neuro flare-ups right now.  

Most of my crashes do NOT involve these symptoms, so it makes me wonder why a few do.  When I first got these symptoms, I thought they were possibly due to low potassium levels, as I'd recently started a B12 protocol.  Now, I'm not so sure.  I'm very good about maintaining my potassium levels while on the B12 protocol.  Are these symptoms just another bizarre aspect of this condition?  

I'm looking back on my health records for the last year trying to find any common denominator between these neuro symptoms and other factors near in time.  So far the only possibility I've come up with is that many of these episodes arose after eating eggplant.  Eggplant, of course, is a member of the nightshade family of foods, which is sometimes cited by PWME's as problematic -- specifically, leading to neuro symptoms.  But the thing is, there have been many more times throughout the past year when I've eaten eggplant and not gotten these symptoms.  Why sometimes and not others?  

I may have to cut out eggplant altogether for a while and see if the neuro symptoms stay away.  Other than that, I'm out of guesses.  I would love it if anyone else had some insight into this.  Is is just one of those inexplicable symptoms of ME/CFS that we simply have to deal with?  

Thursday, September 20, 2012

The Problem with Getting Sick When You Have ME/CFS

I'm just now starting to get over a bug that I've been battling with for the last 11 days.  Looking back over my health chart for this year, it appears that this most recent bug is the 7th to hit me since the beginning of the calendar year.  We're in the 9th month.  That means I'm averaging one cold/flu bug every 1.2 months.  Mind you, this is on top of being regular ME/CFS-sick 100% of the time .... something I've heard referred to as being "sick on top of sick" (SOTOS).  Before I got ME/CFS, I typically caught a bug about once or twice a year at most.

Taking a conservative estimate, I'd say the symptoms for each of these illnesses lasted on average about 10 days.  That's 70 days of being SOTOS this year ... and we're only mid-way through September.  So far, there have been 274 calendar days this year.  That means I'm SOTOS 25% of time!  One out of every four days!  The numbers sound could that be?  But when I look back on the past 8.5 months, it seems about right.

Whenever I try to explain ME/CFS to someone--which is rarely--I focus on the immune compromising aspect.  When I'm finished with this part of the explanation, the other person asks, "so, you get sick a lot."  I usually agree, and move on to my next point. But's that's not really the whole story, is it?  It's not just the frequency of infections.  It's really a triple threat: frequency, duration, and severity.

Regular ol' every day bugs that would have, in the past, barely fazed me, now knock me out of commission.  How do I know that these are just regular 'ol every day bugs?  Because my healthy wife and daughter get them too.  They're hardly affected at all...maybe a little runny nose or a slight cough, but they're no worse for the wear.  I, on the other hand, am knocked out with intense flu-like symptoms.  Regular colds become elevated to flu-like severity, and flus become a nightmare.  
Since getting ME/CFS, I've had sore throats so bad that I'd have never thought such pain in one's throat could have been possible.  It's the kind of pain that constantly demands your attention no matter how much you try to distract yourself.

I wonder sometimes if these serial illnesses are preventing me from making more progress toward remission.  What if every time I catch one of these bugs, I'm sent back to square one?  That's what it feels like sometimes.  I wonder, if I could somehow string together enough non-sick days in a row, would I slowly creep back toward regular health?

Thursday, September 13, 2012

Summary of 3rd Visit with Dr. C

I had my third visit with Dr. C yesterday.  I reported that the Equilibrant has undoubtedly helped me feel better by about 5% on my personal rating scale.  The increase may have been even more significant if I hadn't used the resulting increase in energy to engage in additional activities, leading to crashes.  But all in all, my crashes seem to be shorter and less severe on the combination of Equilibrant and ImmunoStim.

The Inosine experiment, however, was a failure.  For three weeks, I tried taking 2 Inosine tablets, 2 times daily, and I saw no improvement.  This wasn't a surprise, as apparently only 40% of the approximately 70 patients who tried Inosine with Equilibrant saw any additional improvement.


Our next step is to try a drug called Amantadine, which is currently FDA-appvoved for Influenza and Parkinson's disease.  Dr. C only recently began using it for ME patients, but he has seen some encouraging initial success after trying it on 20-30 patients.   

In a prior post, I wrote a brief preview of Amantadine based on what Dr. C described in my previous visit.  The gist of it is that Amantadine is supposed to prevent the double strand RNA viruses (enteroviruses) from replicating.  It does this by blocking the virus from contacting the ribosome inside the cells, by interfering with the internal ribosome entry sequence (IRES).  Dr. C explained that it is like blocking a key from its corresponding keyhole, thereby preventing the replication process from being turned on.  

Side effects of Amantadine, according to Dr. C, are minimal.  Any side effects reported were in "older patients" (not defined), and included slight cardiac arrhythmias.   

I'm supposed to take Amantadine for one month.  If I haven't seen any improvement after a month, I'm to quit and move on to the next drug...


Epivir is an antiviral that was originally used to treat HIV patients.  HIV patients often initially experienced significant improvement with Epivir, but the virus would then adapt to the Epivir after a year and the drug would lose it's effectiveness.  For this reason, it was later used in combination with other antivirals to have a more long-lasting benefit.  Dr. C believes it can have a more long-lasting benefit for PWME's as well, even without combining it with another drug.

Dr. C states that Epivir is a fairly safe and non-toxic drug, with few significant side effects being reported.  The side effect known to Dr. C, lactic acidosis, is theoretical - Dr. C has never seen a patient who actually experienced it.  

Dr. C's studies have shown that Epivir can be effective when combined with Equilibrant for some patients, and when combined with Inosine for others.  It works in about 30% of the patients for whom he has prescribed it.  When it does it work, it seems to work quite well.  

Dr. C related several anecdotes in which patients had very good success with Epivir, including a story of one patient who was apparently brought back to nearly normal functioning by a combination of Epivir and another unspecified antiviral (Valcyte?)  Dr. C cautioned however, that Epivir is not something that normally cures other words, if a patient improves and then stops taking the drug, the virus will come back just as strong as before.

Looking to the Future

Dr. C stated that if these two options don't work, then he will be "close" to running out of tricks.  However, he is hopeful and excited about a class of drugs currently in development by the drug companies for the treatment of Hepatitis C.  When I asked why he believes that a drug for Hepatitis C would be effective for ME/CFS, he explained that Hepatitis C is also caused by a double-strand RNA virus (enterovirus), thus any research on drugs developed for any other enteroviruses should help PWME's.

Dr. C noted, however, that a fresh wave of politics and in-fighting between the drug companies is delaying the development of these drugs.  Apparently one drug company holds the secret to 1/2 of the magic formula, and another drug company holds the secret to the other half.  Both companies have figured out that if they combine their recipes, they can produce a very lucrative drug. But so far they have not been able to agree on which of the two companies will produce the drug and how they will share the profits.  

Sunday, September 9, 2012

Book Review: Love and Fatigue in America, by Roger King

*I've added a new review to my book review page.  The full text of it is also copied below in this post.

The author of Love and Fatigue in America, Roger King, is an English novelist and professor who emigrated to the United States in the early 1990s to begin a new professorship at Eastern Washington University.  At the time, he was getting over a relationship break-up and looking forward to a fresh start in America.  But within his first year in Washington, he came down with ME/CFS and was soon forced to quit his position at the University.  The rest of the book follows King's life in the United States over the next decade, as he migrates from state to state, trying to find love and at the same time battling ME/CFS.

Incidentally, as King explains in the introduction, the book is an "autobiographical novel," meaning that the majority of the book recounts true events in the author's life.  Whenever he's unable to remember details (often due to brain fog), he liberally fills in the blanks with his best and, sometimes, most creative approximation of the true events and/or dialogue.

I'm having a hard time writing an objective review because, frankly, I loved it.  In fact, I probably would have loved the book even before contracting ME/CFS because I've always found it interesting to learn emigrants' fresh impressions of America.  King frequently finds new ways to give the American reader a fresh, humorous perspective on the county.

Then, of course, King's musings on life with ME/CFS are instantly recognizable.  He has a way of summarizing the frustrations and paradoxes of life with ME/CFS in a way that will make any blogger (*ahem* myself) question whether there is anything new to say that King hasn't said better!  I began reading the book by highlighting all of the particularly quotable passages about ME/CFS, but was soon forced to abandon this when many pages were covered top to bottom in highlights.

King's prose is pleasing and rhythmic--almost spartan at times--as he employs short sentences that are easily digestible to the brain-fogged reader.  Few chapters are longer than 4 or 5 pages.  Occasionally he breaks from prose altogether to give us a short chapter in verse.  When I've seen this done in the past, it sometimes signals an author who is trying too hard to add "artistic merit" to their work, but King somehow makes it work.

If I were to find a criticism of the work, it would be that the 4th of 5 parts, entitled "Other States," in which King recounts a period of time where he wandered from state to state in a Jeep looking for his next home, seems disjointed and rushed.  Perhaps this was meant to mirror the disjointed feeling of that time in his life, but he loses the narrative thread.  In my opinion, the book would have been stronger without this section.

King is also quite frank about his sex life, which didn't bother me. But I can see how other, more sensitive readers might place certain passages under the category of TMI - too much information.

In my opinion, Love and Fatigue in America, should be on every PWME's to-read list.  It's the first and only book I've found that combines an interest in ME/CFS with a more general interest in good writing and entertaining storytelling.

Tuesday, September 4, 2012

Dr. Learner's Practitioner's Guide

Under my list of Reference Sites on the right side of the page, I've added a new link to Dr. Learner's Practitioner's guide.  Here it is again.

Dr. Learner provides some excellent recommendations about the appropriate doses and frequency of antiviral treatment for ME/CFS.  Based on his recommendations, I am not taking nearly enough valacylovir.  He would advise that I take the same dose that I'm currently taking (1 gram), except four times a day, not one.  I'll discuss this with Dr. W at my next appointment.

He also includes a section about treating co-infections such as Lyme and Mycoplasma Pneumonia, which he says must be treated first, before the anti-viral treatment begins.  Again, he would apparently advise that the Doxycycline regimin that I'm taking for Mycoplasma isn't nearly enough.

Sunday, September 2, 2012

September Will Be Heart Rate Monitor Month

I've had a Polar FT4 heart rate monitor (HRM) for several weeks, but I haven't done much with it besides wear it occasionally for a few hours at a time and observe general patterns.  Nothing too formal.

After watching the Pacific Fatigue Lab's webinar last week, I've decided to devote the next month to giving the HRM a full test.  This will mean wearing it every day, all day, and stopping whatever I happen to be doing if my heart rate reaches a certain limit.  When my heart rate falls back within acceptable limits, I can resume activity, but only as long as it stays  below that limit.  In my case, I'm starting off the month with the limit being 105 beats per minutes.  That's six beats below my predicted AT based on the usual formula used for CFS patients.    

If needed, I will adjust it even lower.  At the end of the month, I'll review my monthly average and compare it to past monthly averages to see if the heart rate monitor helped improve my overall health rating and reduce the severity and frequency of crashes. 

Having worn the HRM for the last two days, I can already tell it's not going to easy getting used to wearing this thing -- at least the chest strap part of it.  I have a newfound respect for the discomfort women deal with in brassieres.   

Daily Health Rating Average - August   

Meanwhile, I've calculated my monthly average for the month of August and it was the lowest since before I started Equilibrant in April: 76.93.  This is not a surprise, as I pushed it WAY too hard in August, with several family obligations.  But September should be a very mellow month and I should be able to stay home and rest every weekend.  If the monitoring is working, I would hope to see a measurable increase in my health rating at the end of September.  Either way, I'll post the results here on my blog.  

I also note that I've now been keeping a daily health log for a full year.  It's incredible how quickly that year went by.  Before I got sick, I could have never imagined having the patience to record so many details of my daily life every single day.  It's just another example of how, having lost the health that I took for granted, I'll go to almost any length to try to get some of it back.  

Month         Avg. Rating.     Notes             
Sept.          72.34                             
Oct.           77.16                  
Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 
                                          vitamin powder
Dec.           80.39               Officially diagnosed; changed diet to low carb; added  
                                          ImmunoStim, NT Factor, and pro-biotics
Jan.'12       79.07               Added T3 thyroid, pregnenolone, and magnesium
Feb.           72.73               Added methylation protocol; crashed twice due to low   
                                          potassium and flu
Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 
                                          tried LDN
Apr.            75.50      
May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.
June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   
                                         month; ImmunoStim ran out and is on back order.
July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 
Aug.           76.93               Stressful month, with two deaths in family; Travelled out of
                                         town twice and hosted a party at house