New doctor, new treatment plan

Last month, I wrote briefly about my good fortune in getting an appointment with one of the most highly-respected CFS doctors/researchers on the west coast of the United States. (Dr. C).  Yesterday was my first appointment with Dr. C, and it exceeded all expectations.  Here's a brief summary:

Overall Impression

I must admit, I left the appointment with a slight sense of awe.  Dr. C comes across as not only the brightest doctor I've met, but probably one of the brightest human beings I've met.  He speaks very quickly, as if his mouth can't keep up with his rapid train of thought.  His passion for ME/CFS research is impossible to mistake.

Dr. C spent exactly an hour and 24 minutes in the exam room with me.  He took by far the most detailed medical history of any doctor I've seen, even inquiring into illnesses from my childhood. Mind you, this is a doctor who accepts ordinary insurance plans, meaning he presumably receives the same amount for this appointment as a doctor who spends 5 minutes in the exam room.  Clearly, he's not just in this for the money.

Th1/Th2 Imbalance

Dr. C has a fairly strong reputation among patients online.  You don't read many criticisms of him.  When you do find criticisms, they are usually to the effect that "he is too focused on enteroviruses."  I think this misses Dr. C's main point.  More than being an "enterovirus guy," Dr. C is really more of a "Th1/Th2 imbalance guy."  As we know, Dr. C isn't alone in this theory.

Dr. C explained the imbalance using a see-saw analogy.  According to him, the normal state of the immune system is neutral between Th1 and Th2, represented visually as a see-saw in a horizontal position.  When we experienced the initial viral infection that triggered our ME/CFS, the see-saw tilted toward the Th1 side.  This is what the immune system is supposed to do.

The problem arose when that initial infection was finally suppressed.  For reasons not understood, our immune systems didn't return to the normal, horizontal position.  Instead, it shifted too far to the Th2 side, and became stuck there.

When an immune system is in its normal, balanced position, it keeps all of the viruses in our bodies suppressed.  (As you may know, when your body defeats the initial infection, the virus is not completely eliminated from the body.  Rather, it hangs around at a subclinical level.)  A healthy immune system ensures that viruses stay at a subclinical level.

With the immune system stuck in Th2 mode, viruses can reactivate.  This is where the cycle of crashes and recovery comes in.  Viruses periodically rally and mount an attack on the body.  The immune system responds by switching back into the Th1 mode just long enough to defeat the attack.  When this happens, you experience a crash.   

After the virus is suppressed again, you recover from the crash.  But instead of the immune system returning to the neutral position, it returns once again to the Th2 position.  This allow the virus to mount another attack, and the cycle continues.

It is thought that overexertion or stress can trigger the virus to mount another attack, which is why many of us crash when we do.  But these certainly aren't the only triggers.  Viruses will mount renewed attacks on their own, which explains why simply "taking it easy" doesn't eliminate crashes.  

This is the basics of Dr. C's (and others') theory, which I hope I've accurately captured.  His explanation was actually much more detailed and nuanced, but I was simply not able to take notes fast enough to keep up with him.  

Enterovirus Theory - Background

Enteroviruses are viruses made up of RNA strands, rather than the more typical DNA strands.  The most well known type of enterovirus is polio, but there are 70-80 lesser known enteroviruses, and probably many more yet to be discovered.  

Going into the appointment, I was skeptical of the enterovirus theory of ME/CFS.  It isn't discussed much or given much credence on ME/CFS forums.  But after listening to Dr. C, I am more convinced that enteroviruses may be responsible for a large portion of ME/CFS cases.

Dr. C didn't exactly deny that some cases of ME/CFS can be caused by reactivation of common viruses like Epstein Barr or HHV-6, but he seems to believe that the antibody levels seen in most PWME's are not sufficient to explain their symptoms.  In my case, he believes my IgG antibody levels for EBV and HHV-6 are equivocal a worst--but not enough to explain my condition.  (Dr. W, on the other hand, interprets the same lab results as indicating reactivated infections.)

According to Dr. C, enteroviruses are difficult for the immune system to kill because, when they detect that they have activated the immune system, they retreat back into a protected state.  [Dr. C illustrated this point with a hand gesture like a venus fly trap closing -- which I interpreted as representing the retreat of the virus back into the infected cell.]  Enteroviruses have also developed a clever way of deactivating the mechanism within cells that normally causes the cells to, essentially, commit suicide after being infected.  The suicide would "take the virus down with it," but the virus has learned to override this response.  

Dr. C offers his patients the option of having a biopsy of the stomach lining, which is the most likely place to detect an enterovirus.  He states that the test is 80% effective at detecting the presence of enterovirus.   This biopsy costs $250, and is not covered by insurance.  I, personally, have elected to have the biopsy.  

Enterovirus Theory - The Evidence

Obviously, Dr. C couldn't show me the direct evidence of his enterovirus findings -- in other words, he couldn't let me peer through his microscopes.  (He did, however, invite me to read his research papers).

But in lieu of direct evidence, he cited some interesting anecdotes.  The first was that his patients' generally fall into four categories.  The common element among the four categories is exposure to impure water prior to initial onset.  The categories were (1) people who had traveled to Mexico just before onset, (2) surfers & swimmers, (3) people who went camping and drank unfiltered water, and (4) [unfortunately, I can't remember the fourth].

Side note: In my case, I'd unwisely gone surfing four days prior to onset at a beach that is notorious for it's poor water quality, and that often has health advisories posted at the water's edge.

His other anecdotal evidence was the observation that, whenever we hear about an "outbreak" or "cluster" of CFS cases, we usually find reports of water contamination in the area.  In the case of the famous Incline Village outbreak, apparently it was discovered that a lake above the town had recently been polluted by a sewage spill.  [I have not had an opportunity to independently reseach this.]

Why don't more people get ME/CFS?

After hearing the above, I wondered why more people don't get ME/CFS.  Why don't all surfers get it?  Why don't all people who travel to Mexico get it?  Or all Mexicans for that matter!  Dr. C explained that it may be a combination of genetic predisposition and/or the chance convergence of multiple viruses which, combined, overwhelm the immune system.  [This isn't the first time I've heard this latter theory.  Other researchers subscribe to it.]

On the Role of Immunizations in ME/CFS Onset

As you probably know, immunizations are suspected to play a role in some patients' onset. Dr. Klimas acknowledged this in a 2009 New York Times Interview.  

While explaining my medical history to Dr. C, I recounted the unusual "double-dip" illnesses that accompanied my onset.  The brief chronology is: 

1.  I surfed at a dirty beach

2.  Four days later I became extremely ill and remained so for 3+ weeks

3.  I recovered to about 95% and remained so for another 4 weeks.

4.  In preparation for my daughter's birth, I received a TDAP immunization.

5.  Five days later, I crashed again and never recovered.  I've had ME/CFS ever since.

Dr. C believes that this pattern may be the "chance convergence of multiple viruses" that overwhelmed my immune system, as discussed in the section above.  While immunizations involve the injection of "killed" or "inactivated" viruses, they still elicit an immune response.  In fact, this is the entire point of vaccines--to kick the immune system into action so that it learns how to deal with "the real thing" if it encounters it in the future. 

So it seems likely that I may have already been in a sort of post-viral mode, where my immune system was still recovering from the initial infection, when I received the TDAP immunization.  This double hit may have been enough to overwhelm my immune system and send it into its current state of malfunction.    

Treatment Plan

Dr. C states that he typically treats patients with any combination of 3 treatments.  The first is Gammaglobulin injections to boost the immune response.  Because my bloodwork was adequate in that area, I do not qualify for this treatment.

The second is with Interferons.  This is a highly toxic treatment which is usually reserved for only those in severe pain.  Since pain is not a major component of my ME/CFS, we ruled this out.

The third is an immune stimulant called Equilibrant, either alone or in combination with Inosine and Thymic protein.  He states that he as treated over 800 patients with Equilibrant, and that 53% of his patients respond, and that some of them return to normal, balanced immune function.  When the Equilibrant works, it returns the immune system to the balanced position, so that it is no longer simply reacting to the viruses, but actively suppressing them.  So, while I'd certainly like better odds, I'll welcome a 53% chance of fixing my immune system.

The Equilibrant comes in packages of 90, which are sold for $45 each.  I was advised to start with 1 pill per day and gradually work up to 6 per day.  Obviously, it is expensive, but apparently those who improve can reduce their dosage to a 1-per-day maintenance dose.  

As a side note, Dr. C says Hispanics/Latinos tend to require much lower doses of Equilibrant, while African Americans typically don't respond to it all, unfortunately.  

Location of the Virus

Dr. C was the first doctor to offer an answer to the question: why do I experience pain in the kidney areas?  The kidney-area pain is like a barometer of my overall health -- when it increases, so do my flu-like symptoms, aches and pains.  Dr. C explained that once inside the body, viruses can move to any location they choose.  For some, they move to the brain.  That's why many PWME's experience brain fog.  For others it's the heart, others the lungs, and so forth.  (The lungs, in fact, are a common location, which is why so many of us experience shortness of breath.)  

He also said that kidney pain is not nearly as uncommon as I had believed.  A fair number of his patients get kidney-area pain due to viral infection in that area.  This made me feel a little better.

A Note on Low Dose Naltrexone

When he heard that I was taking LDN, Dr. C commented that it doesn't seem to help many patients.  In his experience, it helped only a small percentage, but for those it helped, it helped very significantly.  

Further Reading

For further reading on enteroviruses, Dr. C recommended that I study the following two websites:

www.enterovirusfoundation.org

www.evmedresearch.org 

My Conclusion

I tend to be cautious about new doctors and their treatment plans, but Dr. C presents a compelling case.  If nothing else, his conviction and confidence in his findings are hard to ignore.  I certainly intend to give him a fair chance to fix me.   

Health blogger threatened with jail time...

Have you heard about the health blogger in North Carolina who is being taken to court for practicing nutrition without a license?  Apparently, the state is suing him for advocating the paleo diet, alleging that his advocacy of the diet amounts to "practicing" nutrition.

Although most of us ME/CFS bloggers try to include disclaimers stating that we are not doctors, have no medical training, etc., this is may not be enough.  In the case of this particular blogger, posting strong disclaimers both before and after his posts was not enough to deter the State of North Carolina.  As ridiculous as the state's position seems, I think it's best to err on the safe side and stick to two rules:

1.  Be clear that you are recounting your personal experiences whenever possible, and

2.  When summarizing research, cite to your source(s) and make clear that you are simply paraphrasing or condensing the cited material.

And now for the ultimate irony of this post:  

Disclaimer: Although I am a lawyer, I do not practice in the area of medical licensing.  The above "rules" do not constitute legal advice, and are only intended as a lay opinion.  If you have any doubts about the legality of a blog post or topic, consult a qualified attorney who is licensed in your jurisdiction....or whatever seems prudent to you.  Just don't rely on my two "rules."

Probiotics: Putting the "error" in "trial and error."

Recently, I decided to experiment with a super-potent brand of probiotics called VSL3.  In spite of of the cost (almost $60 in capsule form), I thought I might need these super-biotics because I'd recently taken two full courses of antibiotics.  Since I'm already fighting off candida, I figured that those two courses of antibiotics must certainly have decimated by gut flora and given the candida enough room to mount a full scale attack.  So I went for what I called in a previous post, "the nuclear option" of probiotics: VSL3, to replace all the "good bacteria" that the antibiotics must have killed.

I had ordered the VSL3 over the internet, and it arrived on my doorstep two days later in a Styrofoam cooler the size of a small TV set.  Deep within the cooler, under several layers of ice and exotic packaging, was a tiny bottle of well-chilled probiotics.  I felt a little like I was involved in international espionage - like I was receiving a dangerous agent of biological warfare.

I took one capsule of the VSL3, for the first time, on Saturday night before going to bed.  The next morning I felt nauseous and crashed all day.  (Although, the strange thing about this crash was that it was limited to just one day.  I've never before had such a strong but brief crash).

Since nausea is not one of my regular ME symptoms, I figured that both the nausea and the crash that came with it, were probably caused by the VSL3.  But I decided to give it another try on Monday night.  After all, the VSL3 was probably the most expensive item in my refrigerator by a factor of 10.  I didn't want to let it go to waste.

Tuesday morning brought the same nausea and an even worse crash.  This crash came with a rapid heart beat, like the bad crashes I used to experience very early on after initial onset of ME/CFS. So I've decided to cut my losses and write off the VSL3 as a failed experiment.

[5/12/12 update:  I've since been advised by a PWME friend that he's heard that VSL3 causes that exact same reaction -- rapid heart beat and all -- for a certain subset of PWMEs.  Obviously, I cannot verify my friend's statement, so I'm merely relating what he told me.]

To be fair, several people on PR have reported good experiences with VSL3, so it may be simply that the product wan't right for me.  But this brief setback certainly won't prevent me from continuing to search for the right combination of supplements and prescription(s) to get me into remission.

Avoiding crashes: like avoiding hangovers

There was a time in my twenties when I found myself making one particular mistake over and over:  About three or four times a year, I would wake up with what felt like the world's worst hangover -- the kind of hangover where every atom in your body wants to purge itself simultaneously.  Each time, I would ask myself, "how did I possibly I let this happen...again?"  Then I would promise myself: that was the last time!

Inevitably, I would let it happen again.  

Then, one day, I heard a radio program discussing a psychological study about why people repeat their mistakes in spite of themselves.  I don't remember the conclusion of the study, but it got me thinking about how foolish it was that I continued to make the same mistake repeatedly.  I finally resolved to do something about it...something more than vague resolutions.  

I came to the conclusion that my hazy but well-meaning intentions were completely insufficient.   They were insufficient because they relied on me making a judgment call ("should I have another drink?") based on how I was feeling at the time of the decision.  This, of course, was an awful predictor of how I would feel the next morning.  What I needed was to take the decision out of the hands of the person who had repeatedly bungled it (the 11:00-p.m.-on-a-Saturday-night Patrick), and put it in the hands of a different Patrick.  

On the other hand, I didn't want to leave the decision to hungover-Patrick either, because that Patrick would choose to never drink again.  I needed a moderate Patrick; a Wednesday-at-noon Patrick to make a decision by which we would all abide.

Now, the only way that Wednesday-at-noon Patrick could hope to have any control whatsoever over Saturday-at-11:00 Patrick was to set specific, quantifiable rules.   Vague admonishments like "don't drink too much," had already failed.   So I established two simple rules: (1) no more hard alcohol--stick to beer and wine, and (2) no more than "x" drinks in a night.  Period.  (The value of "x" is private.  Sorry.)

For the most part, this stratagem worked, and I was able to avoid hangovers for years and years, while still enjoying myself socially.

By now, I'm sure you've predicted where I'm going with this.

I've recently realized that I need to apply the same strategy to ME/CFS pacing.  If I leave my daily planning up to the Patrick-who's-feeling-pretty-good, that Patrick will always enthusiastically dive into a few too many activities, leading to the inevitable crash.  I've recognized this pattern emerging once again, and I'm determined to squelch it more quickly than I did the hangover problem.

So now, I have one simple rule: One errand per day, maximum.  No exceptions.  No matter how good I'm feeling on any particular day, I no longer trust that feeling any more than I trust Saturday-night Patrick.  

So far, I've only employed this strategy for a week, but I think it may be working.  In the mean time, I'm off to post this analogy, in reverse, on a blog for alcoholics.

I kid. 

Do I need to see *multiple* ME specialists?

I just finished my second course of antibiotics since the start of the year, and just like the last time, I'm riding a hot streak again.  Any time I go for more than about 4 days without a crash of some kind, I consider myself to be on a hot streak.  My crashes are ordinarily regular and dependable.

According to the collective knowledge of the ME/CFS blogosphere--and common sense--when one feels better for a time after antibiotics, it suggests chronic bacterial infection.  (So far, I've mainly focused my treatment on my viral infections, such as EBV and HHV-6.)  I have two possible theories to explain this.

The only bacterial infection that appeared on my blood panels was mycoplasma pneumoniae, a common ME/CFS co-infection.  Only the IGG titers were high (not IGM), but they were very high, indicating a possible re-activation of an old infection due to my weakened immune system.  (3.08, where anything above 1.1 is considered positive.)

The other possibility, of course, is that I have another, unidentified chronic bacterial infection...probably something related to Lyme disease.  I've had the Western Blot test for Lyme, and all 10 bands were negative, which most doctors consider to be fairly definitive.  But, I understand that Lyme literate medical doctors (LLMDs) will also test for a number of related bacteria that are not detected by the Western Blot test.  I may need to visit an LLMD to rule out these other Lyme-like infections.

Of course, another possibility is that my "hot streaks" are mere a coincidences.  After all, I'm working with a sample size of only two.  For now, I plan to find an LLMD in my area, and if those tests are negative, consider treating mycoplasma with antibiotics.  Although, with my existing candida overgrowth, long term antibiotics must be a last resort.  The bad news is that there is only one doctor in the entire United States who promotes treatment of ME/CFS by attacking mycoplasma infections.  But the good news is, he happens to work in my zip code!

All of this just goes to show how complicated ME/CFS can be when you start dealing with opportunistic infections that take advantage of a weakened immune system.  You have to spend an enormous amount of time and energy tracking doctors who are knowledgeable about these infections. Even the rare ME/CFS specialist tends to focus on select groups of pathogens, such that, if you want to see "the big picture," you are left with no choice but to find multiple ME/CFS specialists.

Quotes about ME/CFS

I recently found this list of quotations about ME/CFS--mostly from leading researchers in the field--on another blog I follow: "Thoughts about ME."  It really paints of sobering picture of what we're dealing with, and I commend the blog's author, Jeanette, for compiling this diverse list.

A little vindication with my GP

For several months I've been debating about whether to keep my GP (Dr. L), or try to find a doctor who is more familiar with ME/CFS.  While I'm already the patient of an ME/CFS specialist, it would be nice to also have a GP who is at least somewhat familiar with ME/CFS and its treatments.  For one reason, my specialist is an hour's drive away, and not all of my ME-related problems are worth the hour's drive.  Another reason is that I would like my GP to be able to coordinate my overall health care plan with my ME/CFS specialist -- and it is difficult to do that when the GP doesn't have a clue about ME/CFS.  But maybe the most important reason is that I wasn't even sure that my GP even believes in ME/CFS.  While I can certainly work with a doctor who doesn't understand ME (who does?), I can't work with a doctor who doesn't believe in it.

But on the other hand, I'm very reluctant to fire my family doctor after so many years.  She was my doctor well before I got ME/CFS, and she knows my medical history well.  She is also my my wife's GP.  But maybe most importantly, she is a good doctor and a good person.  So it would be a difficult decision if I decided to leave.

I came to the conclusion that I needed to have a frank and honest discussion with Dr. L to learn exactly where she stands with regard to ME/CFS.  Our conversations about CFS in the past have been vague and fleeting.  While she could clearly see that I was struggling with a number of difficult health issues, she simply and honestly admitted that she did not know how to explain them.  When I finally obtained a diagnosis of ME/CFS from another doctor and told Dr. L about it, she maintained a poker face.  I wasn't sure what to make of her reaction...or non-reaction.  Ever since then, we've simply treated my symptoms as stand-alone symptoms -- outside of the context of ME/CFS.

For the past two weeks, I've been battling a cold/flu and one of the worst sore throats I have ever experienced.  I hoped the sore throat would pass on its own, and for a while it improved. Until suddenly it got much worse.  I was once again forced to cry uncle and seek help from my GP (which I knew might mean anti-biotics -- something I've been trying to avoid because of my candida). This would be the perfect opportunity to have a frank discussion with Dr. L.

First, I let Dr. L examine my throat.  She was, not surprisingly, horrified by what she saw.  Although the results of the lab culture won't be back until Monday, she is certain it is another bacterial infection.  She wrote a prescription for antibiotics (which, by the way, cleared up my throat within 48 hours -- sweet relief!)

After the examination, I began the CFS conversation.  I began by pointing out that this was the 2nd time in two months, and the 5th time in the last 12 months that I've needed antibiotics to clear a throat infection.  Then we discussed some of the other chronic health issues that have arisen in the last year -- all of them documented in her records.  With my recent health history fresh in her mind, I brought out a copy of my recent blood work from Dr. W, and showed her only one result: the Natural Killer Cell activity test, showing me at 8 on a range of 8-170.

I explained that NKC activity is thought to be one of the key indicators of ME/CFS.  I quoted a study that found that about 65% of patients who've been diagnosed with ME/CFS have low NKC activity.  Then I explained what Dr. W had previously explained to me: that this low NKC activity is allowing infections to flourish -- both viral and bacterial.

During this conversation, I could see that the proverbial lightbulb went off in Dr. L's head.  She nodded enthusiastically and seemed genuinely interested.

At the end of this discussion, I said, "Regardless of whether we call it ME or CFS or whatever, I need to know that you understand that this is a chronic condition that may require ongoing treatment and may require you to work with Dr. W.  Are you on board with that?"

She said that she was, and I believed her.  So, it was a relief for me to finally know that Dr. L is a member of my team now and understands her role.  This may not be a permanent position -- I may reevaluate in 6 months or a year, but for now I'm relieved to be able to keep the GP that I've had for so many years.  And I like to think that I've done my small part in educating Dr. L, so that her next ME/CFS patient might have a slightly better experience.