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, April 28, 2012

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:


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.   

10 comments:

  1. Great write up! Very articulate recap of your visit with Dr. C. Thank you for sharing. Best wishes for successful treatment outcome.

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    1. Thank you David, I appreciate that. Best of luck with your treatments as well!

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  3. I'm looking forward to any updates you have regarding the Equilibrant treatment.

    Thanks for such an informative run down of your doctor's theory and methodology. Equilibrant will definitely be something to consider.

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    1. Thanks Summer! I'll definitely keep you updated, either here or on HealKick.

      Take care,

      Patrick

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  4. Hi Patrick -- thanks for the very informative blog. Could I trouble you to expand on one point? You wrote

    "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."

    Could you tell us what bloodwork this was exactly? IgG subgroups? Or something else?

    I, too, hope you keep posting about your experience with Dr. Chia and Equilibrant.

    Thanks again

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    1. No trouble at all. Dr. C said that, although I was low in one IgG subclass (subclass 3), I would need to be low in 3 or 4 of the 4 subclasses to qualify for Gammaglobulin treatment.

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  5. Great post. I like your blogs. You separate the topics for easier readability and you aren't excessive, straight to the point. I typically cannot read blogs but I was able to get through this.

    I can't say I fit into any of the triggers he mentions with water. We've lived out in the country my entire life and have well water. I just can't remember triggers like most people. For me it started with pain and then I suddenly developed terrible anorexia nervosa, after recovering from that, I had chronic fatigue. I was high functioning though and at my best went to mexico in 07, in 08 everything went down hill.

    I do however seem to do much better near the ocean. On my recent trip to pensacola, we stayed near the beach, and I slept so much better and was able to do much more, though my crashes were just as severe.

    I am very impressed that Dr. C took that much time with you. All my appt.'s with my cfs doctor have been extremely rushed and my history was not reviewed as I had hoped. It is also nice to hear he takes insurance, this is something lacking amongst CFS md's. Please let me know about the skype thing!! Again, thanks patrick, I will try to follow your blog. P.S. I am currently taking 1/8th of equil. every night, for now that is all I can handle with my extreme sensitivities, I am concerned it won't help b/c of the low dose, but something is better than nothing.

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    1. Hey Chis,

      I'm curious to know if you've had any improvement from the small amount of Equilibrant so far?

      I wonder if the well water could have given you an enterovirus?

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  6. Ditto to every word of your blog.

    I have nothing praises for Dr. Chia. My husband, 81 years old, has suffered the effects of the enterovirus, including CFS,cronic leukocyte leuchemia, and bladder cancer. Dr. Chia began treating him after a severe case of meningitis four years ago. The CLLhas stabilized, the bladder cancer is in remission, and the CFS under control. His regimen consists of gammaglobulin
    infusions (IVIG) every few months, 4 tablets of Equalibrant and 2 of Enosine per day, and two packets of Proboost per day.

    He has had no bad reactions to any of the medication. However, every time we traveled to Argentina the symptoms returned with a vengeance.

    We are priviliged to have been able use the services of such a noted and compasionate doctor whose thoroughness knows no bounds.

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