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.  

Inosine

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. 

13 comments:

  1. Glad to hear you're still keeping Dr. C on your roster. Thanks for the update. This must all be pretty recent news as he did not mention any of this when I spoke with him last in Dec. It's painfully disappointing that the CDC was unable to test the samples in a timely manner. That could have been a huge deal if they had tested promptly and properly and actually found what we know is there.

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    1. Thanks Weyland. Yes, I got the impression that it was all recent news.

      Funny you called it a "roster." I always refer to Dr. C as my "1st team" doctor or "starter" and all others as "2nd team" or "off the bench."

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  2. You don't have to answer, but I'm guessing the "BS" lab is Igenex. Kudos to Dr. C. :)

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  3. After 23yrs,my Igenex test was one that was not positive but equivocal on the Igm.However I had a weak but positive Melisa LTT so I was given six weeks doxycycline which I took and about nine months later my fibromyalgia had ceased.I still have other lingering symptoms but that was a real result for me after so long-Hilary

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    1. That is interesting. Thank your for sharing that story. Do you feel confident you had Lyme all along, or do you believe there might be another explanation?

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  4. Stomach biopsie revealed HHV 6 in my case. Vagus nerve attention is growing it seems (Michael Van Elzakker for instance).

    About Lyme: i had eliza, Western blot & LTT done. All of which are uncertain tests.
    But when pple test pos for more than one of these tests, they should explore the Lyme possibility imo.

    My tests weren't convincing enough to me. Still i did the IV ABx, oral ABx And Cowden protocol. Nothing changed after more than a year of therapy. Which convinced me i truly don't have Lyme.

    But i know a part of the 'ME/cfs' community truly has undiagnosed Lyme. Many of my friends had several pos tests. Accompied w/ positive tests for Co-infections (erlichia, bartonella, ...)

    I don't have any bacterial Co-infections.
    But a lot of herpes IgG 's are off the charts. EBV, CMV, H Simplex. And as mentioned HHV6 in stomach biopsie.

    (Els Van Hoof)

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    1. Thank you for sharing your experiences. I truly learn from everyone.

      I took Antibiotics for about 4 months in late 2014 for prostatitis, and was roughly the same during that time. It as a mix of antibiotics, including some of the big guns like Levaquin and Cipro. I note that my semi-remission was a mere 3 months later in March 2015, so it's possible, although I believe not likely that the antibiotics did help me.

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  5. Hi Patrick,
    I want you to know that I still read your blog often and really appreciate all the info you give. I commented on here, probably a few years ago now, about my husband who is very similar to you in so many ways. Last time I commented I think we were about to go to a Lyme specialist on our area. We went and the doc says he thinks it probably isn't lyme, but more likely CFS. He isn't sure how to treat that, but since hubby has high titers (or whatever) for ebv he will try antivirals. Well, it's been around two years now and the antivirals definitely are helping. I'm not saying he's cured, we are always reading, studying, searching for a cure, but for whatever reason the Famvir (and Valtrex, which he took too) seem to help.
    Thanks for all the info. Linda (I may have posted as Retroburgh before)

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    1. Hi Linda, I remember you. Thanks for that perspective. Antivirals (Valtrex) is one of the treatments that I cut out last year because I wasn't convinced it was helping. Then I went downhill. Now I wonder if it wasn't helping after all. Maybe I should go bak on them and see if I improve again.

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  6. Shoot, I don't think I signed in correctly before posting my previous comment so not even sure if it will post. Anyways, I had an additional question.

    I thought the Dr. C stomach biopsies where he finds chronic enterovirus presence as in an active infection was some kind of proof? But when sent in to the CDC they couldn't even find anything? Not even what Dr. C found and stained ie they can't even see what he sees?

    I may be missing something but that doesn't really add up.

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    1. Hey Yorke. Yeah, I agree, it didn't fully make sense to me either. My assumption was that the testing process was somehow time sensitive -- that the evidence of enterovirus infection becomes harder to detect as more time passes. But Dr. C didn't exactly say that. I didn't want to be too confrontational and ask him: "Does this mean your entire life's work might be wrong?" So I had to do a bit of reading between the lines....

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    2. The most likely explanation is that the CDC screwed up, either with their testing methodology or with improper storage of the samples (they sat on them for over a year before getting around to testing them.)

      In addition to Chia's stomach biopsy evidence, there is serology evidence, PCR evidence, and animal model evidence (he's injected stomach tissue lysates into mice and successfully transmitted infection.) The only thing that makes sense is that the CDC did something wrong.

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