Dr. C prescribes Viread

I had my latest appointment with Dr. C last week.  Dr. C is my ME specialist doctor, who I've written about under the Equilibrant Label in this blog.

Viread

Dr. C prefers to treat ME primarily with oxymatrine, and secondarily, he prescribes various anti-viral prescriptions.  Lately, he's been prescribing the anti-viral drug Viread (tenofovir).  He states that about 1/3 of his ME patients who try Viread have experienced improvements.  In a few cases, the Viread patients have achieved remissions, but this is the exception.

Viread was developed and approved to treat hepatitis B and HIV.  Prescribing it to ME patients is an off-label use.  It can be toxic to the liver if used for years, and so Dr. C insists on regular kidney function tests for those who are going to try it.

I agreed to try it.

Unfortunately, however, I didn't think through my plans during my appointment, otherwise I would have suggested I delay taking Viread.  I recently started taking a fairly high dose of Valacyclovir to deal with chronic Epstein Barr Virus (EBV) -- 1G 3x/day.  At this time, I don't want to add another drug that could tax the liver and/or kidneys at the same time.  The higher dose of Valacyclovir is supposed to last 3 months, at which time I'm supposed to return to a maintenance dose.  My plan now is to start Viread after I go back to the maintenance dose of Valacyclovir.

Lab Results and Pancreatitis 

Yesterday I received the results of another set of blood tests given last week.  Yet again, my IgM antibodies for EBV were very high (about 6 times more than the upper limit of the reference range.)  IgG antibodies were of course very high as well.  This marks the 4th such positive test dating back to January.  

The blood sample was given within a week or two of starting the increased dose of Valacyclovir, so I'm still hopeful that the Valacyclovir will help bring this condition under control.  It is really starting to worry me.  Chronic EBV infections can lead to cancer and organ failure, among other serious health problems.  I need to find an effective treatment.  Health-wise, I'm still able to bring myself into work each day, but I have no energy for anything else.  

In the last week of July, I came down with pancreatitis (inflammation of the pancreas), which is probably related to the chronic EBV infection.  I've told both of my ME doctors, Dr. C and Dr. M, about this but they didn't seem too concerned.  Dr. C palpated the area and didn't say much about it other than it's a common symptom for people with ME and he's surprised it took this long (about 6 years) for me to develop this symptom.   

Today after a particularly fatty lunch, the pain in my pancreas (and to a lesser extent, through my abdomen) got much worse.  I decided to see my GP about it and perhaps ask for some imaging.  This is probably unlikely to lead to any helpful treatments, but I want to rule out any serious problems.  Most likely, this will end up being just another symptom that gets added to my rotating list of ailments.  

Dr. C Appointment

I haven't had a Doctor C appointment in over a year, but I always make it a point to draft a full write-up of my appointment because (a) I want to remember what Dr. C said, and (b) I know there is significant interest from a certain subset of other patients about what Dr. C is recommending.

Unfortunately I'm having a bad health day with brain inflammation and peripheral neuropathy, which makes it difficult to type.  For that reason, I'm going to do an abbreviated summary of my 50 minute appointment rather than a full write-up.  I will try to supplement this post with a more complete write-up if/when I can.

As many people who follow Dr. C's work know, Dr. C is a strong proponent of his proprietary immune-modulating supplement called Equilibrant. His recommended regimens often include taking Equilibrant in addition to one or two other immune modulating drugs or supplements.  With each additional drug/supplement he tries, he finds that a certain % of his patients respond to it.  Those patients continue to take that drug/supplement, while Dr. C moves on to find something that will help the others.

The latest is a more highly absorbable form of the antioxidant bioflavinoid called "quercetin"--this time in the form of dihydroquercetin.  Here is the exact brand and dose that he recommends.  In addition to its anti-inflammatory properties, it helps push Th2 dominant immune systems back toward Th1 and tends to calm overactive mast cells.  (This was the first time I had heard Dr. Chia talk about mast cells.)  I decided I'm going to give it a try.

That's all I can write for today.  I will try to write more later.

Personal Update

I had a birthday this past month.  The big Four-Oh.  Nobody is ever happy about turning 40 and I am no exception.  Officially now, half of my thirties were lived with ME.  But I think about ME less than I did in my first three years of diagnosis.  It is simply part of life now.  

Starting around the beginning of 2016, I believe, I began to ween myself off of the supplement Equilibrant.  (Equilibrant is an immune-modulating supplement that I have written about on this blog--recommended by one of my ME doctors.)  For about 4+ years, I had taken Equilibrant at the full dosage of 6 tablets per day.  During that time, I saw my condition stabilize and I experienced fewer and shorter "crashes."

Equilibrant is expensive and I wasn't sure if continuing to take it was necessary to maintain my level of functionality.  So by about mid-Summer, I had reduced intake all the way down to nothing.  I was completely off of Equilibrant.  And for the first month or two, I didn't notice any change in my health.  

But then my monthly health rating averages fell significantly.  I also developed shingles during that time--possibly related to stopping taking Equilibrant.  Over the same period of time, I also stopped taking daily vitamin B complex tablets.  My energy waned.  

In late September I decided to resume Equilibrant and B complex.  October has been by far my best health month of 2016.  I feel fairly certain that those supplements are helping and that I should continue to take them indefinitely, with occasional breaks or "holidays."  

I also found that my sleep was worse during the time when I was not taking vitamin B complex.  It occurred to me then that many patients say vitamin B12, which is part of the B complex, helps with sleep.  My sleep did improve after resuming B complex.  

So here I am again, stuck in a "holding pattern," very thankful that my case of ME has remained moderate compared to many patients, but also not as hopeful as I once was that I might recover without a breakthrough in ME treatment options.  

I'm Done with Equilibrant

After four years, I'm done with Equilibrant.  (Equilibrant is an over-the-counter immune modulating supplement recommended by one of my doctors, Dr. C.)  Apparently, I don't need it anymore.  I began taking Equilibrant in April, 2012.  Almost immediately, it became clear that the Equilibrant was helping modulate crashes.  The peaks and valleys were less severe and less frequent (especially the valleys.)  So I stayed on Equilibrant at the full recommended dosage of 6 tablets per day for 4 years.

Recently, in my ongoing efforts to find answers to my shortness of breath (SOB) problems, I decided to take an extended holiday from Equilibrant.  In my desperation to find something, anything that helped, I thought there was a possibility, however slight, that Equilibrant was now leading to an autoimmune response that was responsible for the SOB.  So I just quit.  I didn't even reduce the dosage slowly.  One day I just stopped.

It's been about a month or more since I quit Equilibrant and, so far, I still feel fine.  There's been no improvement in my SOB, but that's a topic for another post.  It's possible that I could see the return of the extreme "roller coaster" crash cycle sometime in the future.  For now it seems Equilibrant was the right supplement for me at the right time, but that time has passed.  I seem to have stabilized since I first began taking Equilibrant, so perhaps I simply don't need it anymore.  I'm always happy to give up a supplement, especially one as expensive as Equilibrant, if I don't need it anymore.

At the same time, I've also gone off of a supplement called Immuno-Stim, which was also a collection of immune modulating compounds, which had some over lap in ingredients with Equilibrant.  So far, so good...

Dr. C is frustrated....understandably

I had my latest appointment with Dr. C yesterday.  As usual, we spent more time talking about the landscape of ME/CFS research than we did about my own health, which is fine by me.  The man is fascinating.

As usual, everything below is paraphrased, including quotes, and it is always possible I misunderstood something.

D-Ribose: Why it Might Work

We briefly discussed the supplements I'm taking other than those he recommended.  I mentioned D-Ribose.  He said he'd been thinking lately about why D-Ribose seems to be helpful for so many patients.  He believes that it supplies a substrate that the enterovirus is consuming.

Ribose, he says, is a precursor of nucleic acid—the body processes it to make nucleic acid. Deoxy-ribose goes into DNA, and Ribose goes into RNA. The viruses sit on the mitochondrial membrane and, from there, they "suck in" whatever they need in order to replicate, including ribose.  So he believes that when we take D-Ribose as a supplement, we are replacing the Ribose that the enteroviruses rob from our cells.  Otherwise our cells become depleted of Ribose.

The Slow Development of ME/CFS Treatments

We next discussed his experiences sitting on the "Treatment" panel at the IACFS Conference a couple of weeks ago, along with four other respected clinicians, including Dr. Klimas.  The panel presented hypothetical cases of ME/CFS patients to the audience of physicians and asked how they would treat those patients.  While opinions varied, there was a general consensus surrounding just four treatments, all simple supplements: Vitamin B12, Vitamin D, Coenzyme Q10, and Magnesium.

Dr. C looked at me exasperated and said, "This is 30 years down the line [of ME/CFS research]. And that's all we got!"  His frustration on behalf of patients was remarkable.  He gets it.  

                                                                        On Valcyte

Dr. C mentioned that one of the presenters at the Conference (probably not the one you're thinking of) is always a big proponent of Valcyte.  When a patient has "high" HHV-6 antibodies, this doctor prescribes Valcyte.  Dr. C said that he does not agree that Valcyte is effective for the treatment of ME/CFS, and does not agree that the HHV-6 antibody numbers he sees in ME/CFS patients are indicative of HHV-6 being a cause of ME/CFS.  "In reality, the antibody numbers aren't that high," he said.  He also mentioned his belief that the toxicity of Valcyte makes it not worth the risk.

On a personal note, I have a few friends who swear by the effectiveness of Valcyte, so I'm not saying I agree with Dr. C.  As with everything here, I'm simply passing along his opinions.   

Dr. C's Frustration

If you've read my past blog posts about Dr. C, you know he basically believes he has proved (my word, not his) that ME/CFS is caused by enteroviruses, but he can't get anyone interested enough in his work to try to reproduce his findings.  He said that several patients asked him in open session at the Conference, "why hasn't anyone reproduced your work?"  He said he responded honestly: "I guess they don't think much of it!"

He also expressed frustration that researchers are still wasting time looking for viruses in the blood of patients. The viruses are cleared from the blood very quickly and take up residence in the tissues. Therefore, he believes any "virus hunting" will be futile unless it focuses on tissue biopsies.  

Hope

Drug companies have to spend at least a billion dollars to research and develop a new drug for an ailment.  No drug company, he says, will ever be interested in investing that kind of money unless/until there is consensus about what causes ME/CFS.  (Implicit here was that if someone would just try to reproduce his findings, they'd see that he is right and progress would start to move very quickly.)

At the Conference, however, two groups finally came forward and expressed some interest in looking into his enterovirus work: one was WPI and the other was a geneticist and molecular biologist from Cornell University, Dr. Hansen.  But in both cases, they wanted to work off of Dr. C's tissue samples, rather than collect samples of their own, which I suspect will reduce the value of any of their conclusions.  Dr. C seemed cautiously optimistic about this. 

He also mentioned that the Centers for Disease Control (CDC) has recently become "interested" in studying his samples.  To my surprise, he said that if he had a choice, he'd most like to send his samples to the CDC.  "This is what they do best," he said.  They have enormous labs, teams and resources that are probably the most capable of following up on his work.  

As part of this discussion, Dr. C also stated that when he tests tissue samples of patients after they have been on Equilibrant for a while, they no longer find the RNA that is indicative of enterovirus infection. This is why he believes so strongly in the ability of Equilibrant to suppress (but not eliminate) enteroviruses in ME/CFS patients.  

Dr. C also said he spoke with Dr. Lipkin at the Conference, whom he praised highly and called "very, very impressive." Dr. C believes that Lipkin has an open mind and is interested in Dr. C's theories.  If he can get Lipkin to follow through, it could be a huge breakthrough because Lipkin apparently has the lab, resources, funding, name recognition and support to make a much bigger impact if/when he confirms Dr. C's research.  

Dr. C believes that, while Lipkin previously looked for viruses in ME/CFS patients, he did not (I'm paraphrasing heavily here) calibrate his instruments with sufficient sensitivity for RNA.  The implication was that, while Lipkin's results were useful for ruling out a number of potential viral causes, they do not rule out Dr. C's enterovirus theory.  Dr. C said that the head of Lipkin's lab later told him: "whatever parameters you want us to use, we'd be happy to do it."  Dr. C seemed hopeful about this.  

                                                                       Gamma Interferon

Dr. C was also eager to discuss the research results (which he said are not new) that ME/CFS patients who have been ill for less than 3 years have levels of Gamma Interferon that are 1000x greater than the average person.  Gamma Interferon is a protein that the body produces to boost the immune response.  He said, "you can imagine what all that Gamma interferon does when it floods different areas of your body, like the brain."  

"When we finally learn how to shut down the excessive Gamma Interferon response, that's when you will start to feel better." 

For unknown reasons, the levels of Gamma Interferon tends to drop off after 3 years, and yet patients remain ill.  He has noticed however, that the three year mark is often a transition point for many patients, where they stop having "viral symptoms" (i.e. sore throat, swollen lymph nodes, etc.) but often descend into a deeper state of fatigue.  He theorizes that the immune system, even in its weakened state, eventually wears down the viruses enough so that they no longer result in "viral symptoms."  But at the same time the immune system itself becomes worn down.

Automimmune Characteristics

He also gave an acknowledgement to Dr. Rose's findings that, as time goes on, ME/CFS patients become more and more likely to develop co-morbid autoimmune diseases.  Tying this into his own theories, Dr. C believes that the protein emitted by the double stand RNA enterovirus is what the immune system attacks.  Over time the RNA will mutate and the protein will change.  Given enough time, it's likely that the protein will sometimes evolve to resemble "self."  Now the immune system starts attacking not only the RNA protein, but you.  

Don't miss Christine's account of improvement through treatment with Dr. Chia

A good friend of mine, Christine McLaughlin, continued her series of articles on Health Rising documenting her treatments with Dr. Chia.  This latest article is one of the most encouraging yet and it lends further credence to Dr. Chia's theories and methods.  It's a must-read...  Click here to be taken to Health Rising

My Health - 2013 In Review

I keep a daily health chart where I give my health an overall daily rating on scale from 0 to 100%, where 0 is dead and 100% is how I felt on my absolute worst day before getting ME/CFS.  (So far I haven't cracked 100 since getting ME/CFS).  At the end of each month I average my scores to track my progress from month to month, and I do the same from year to year.  I have a pretty good system of benchmarks to ensure that my rating system stays objective and doesn't skew over time.

The year 2013 was about five percentage points higher than 2012.  This is an enormous improvement for me.  

Of course the trick is to determine what caused this improvement.  That is a very difficult and complex question.  In many ways, the answer is unknowable given all of the treatments I've tried.  I can only offer my best guesses based on intuition and daily charting. But there's always the possibility (although I believe, slight) that I would have improved the same amount had I simply sat back and waited. 

I started Equilibrant in mid-2012 and have continued at a dosage of 6 tablets per day throughout 2013. I believe that it has continued to help me improve.  I have not yet experimented with backing off the dosage, but there have been days where I have forgotten to take Equilibrant and felt (I believe) worse because of it.

Second, starting in about March or April I charged aggressively into Amy Yasko's full methylation protocol.  I submitted urine testing, I analyzed my genetic results, and I was determined to give the protocol every possible chance to reveal if there was anything to the hype.  At the same time I tried to listen to and consider the critics.  

For those who are familiar with Yasko's protocol, she recommends a seemingly ridiculous number of supplements and they can be quite expensive, so I didn't take this decision lightly.  After starting the program, I quickly came to believe that the RNA supplements were ineffective for me so I stopped using them.  Although I started the program in March, it wasn't until October that I had all of Yasko's recommended supplements fully implemented—a seven month process.

I took a significant step up in baseline between July and August (about 3 percentage points) and I have more-or-less sustained that improvement since.  This improvement coincided roughly with adding Yasko's "short cut" supplements—before I even got to the methylfolate and vitamin B12 supplements—the cornerstones of methylation treatment.  So I believe there may have been a connection between Yasko's protocol and my mid-year improvement.  (For more on "short cut" supplements, see mid-way down this post. In summary, I believe it was the PS/pc/pe Complex that may have been responsible for the improvement.) 

More significantly, my brain fog went away almost completely at around that time and has stayed away since.  The improvement has been remarkable. After spending 2011 and 2012 mostly brain fog-free, I started to get brain fog on a daily basis in roughly the first half of 2013.  Although my energy levels and flu-like symptoms had improved, I was concerned that I had simply traded them for brain fog, which is maybe worse. 

Well, for whatever reason, and maybe it was the Yasko program, the brain fog is almost completely eradicated.  I still get it very mildly on occasion and for no apparent reason, but it is basically a non-factor since about August of this year.  In 2014 I plan to cut back further on some of the Yasko supplements and see if the brain fog stays away.

The other major change I made in 2013 was that I switched from testosterone cream to testosterone injections (self-administered) in early April.  While this may have contributed to the improvement, there was a 4 month gap between the start of the injections and the improvement, which makes is a little less clear.

I also moved residences in November and noticed that I have slept better over the past month and seem to have a little more energy in the mornings.  I'm wondering now if my old house may have had environmental "issues" that were bringing me down.  I'll report back if this improvement continues.  

I don't mean to give the impression that 2013 was all roses.  My weak immune system continues to ensure that I contract raging sore throats and a swollen tongue at least 4 times a year.  Despite my best efforts, I couldn't avoid having to take antibiotics twice this year.  I'm working now on restoring my gut flora yet again with a probiotics regimen.  

Additionally, I welcomed a new symptom in the Fall of this year—crippling groin pain and prostatitis—bacterial infection of the prostate. It's unclear if this is related to ME/CFS, but I suspect my weak immune system played a role.  I am feeling better "there" now but my urologist says that once infected, I will always be more susceptible to repeat infections.   

Looking forward to 2014, this may be the year that I begin to actually reduce the number of supplements I take in order to determine which ones have actually contributed to my improvement and which ones may be less effective. 

Thanks as always for reading, and I wish you all improved health in 2014. 

Some pretty big news from Dr. C

I had my latest appointment with Dr. C last Friday.  One of the great things about Dr. C is that he never limits our discussion to my personal struggle with ME/CFS.  He always broadens the discussion into the latest developments in ME/CFS research.  I never have to initiate this broader discussion—he brings it up on his own.  Since I assume he does this with all patients, one wonders how he doesn't drive himself insane having the same conversation with patients after patient all day long.  I can only assume that he recognizes how starved we as patients are for the latest research news and takes pity on us.  He never makes these discussions feel rushed—it's always as if we're sitting in a coffee shop chatting as friends.

                                                                     Dr. Lipkin's Findings

The discussion started with the major findings of Dr. Ian Lipkin that made headlines back in September. (Here's a link to a Phoenix Rising article about those findings.)  Dr. C always has always heaped effusive priase for the work of his fellow ME/CFS researchers, as he did with Dr. Lipkin.  Dr. C pointed out, however, that many people have misunderstood the significance of Lipkin's research, believing that a viral cause has all but been ruled out.  To put Lipkin's research into better context, Dr. C pointed out that not only was Lipkin's virus hunt limited to the blood, it was limited to blood plasma.  Dr. Lipkin did not look for viruses in the white blood cells of ME/CFS patients, which is a better place to look for possible ME/CFS-causing viruses in the blood, according to Dr. C.

When Dr. C did his own virus hunt in the blood of ME/CFS patients years ago, he found enteroviruses in approximately 60% of patients' white blood cells, as opposed to only 2 in 20 in the plasma.  Admittedly, he used a small sample size.

As many people know, Dr. C firmly believes that the place to hunt for any viral cause of ME/CFS (which he postulates is a enteroviruses) is in the body's tissues.  Dr. C has always focused on biopsies of the gut, partly because the gut is the easiest internal organ from which to obtain a biopsy.

Getting back to Dr. Lipkin for a moment, Dr. C noted that Lipkin's next big endeavor is to look for evidence of viral infection in the stool samples of ME/CFS  patients.  According to Dr. C however, this is not likely to be fruitful.  If looking for viruses in the blood is like looking for a needle in a haystack, looking for viruses in stool samples is like looking for a needle in a haystack that is 10x as large.  (He said all this while heaping praise on Dr. Lipkin, so while it is clear that while Dr. C prefers to pursue other theories, the has the utmost respect for Dr. Lipkin.)  At the same time he said, "I certainly have a number of questions for him [Dr. Lipkin] at the March conference"—referring to the upcoming IACSF/ME conference in San Francisco.

Finally, Dr. C also mentioned that Lipkin's next big treatment experiment will be with cytokine blocking drugs, noting that some of Lipkin's recent research has confirmed the "cytokine storm" that many of us believe is a cause of our rampant inflammation.  Without sounding too contrarian, Dr. C again stated that he would be hesitant about recommending cytokine treatment to any of his other patients until further research.

He gave the example of one of his patients who had terrible neck stiffness due to a cytokine storm concentrated in that area.  This patient was treated with an experimental cytokine blocking medicine by another doctor, and two months into the treatment the patient began to have terrible neurological problems, including major involuntary spasms all over his body and the gradual loss of all speech. The patient can only speak now through a computer, ala Steven Hawking.  Dr. C is now attempting to help recover the young man's speech through IVIG treatment.  I asked if Dr. C thought these symptoms were side affects of the cytokine blocking drug and he said, "we think so."

New Antiviral Drugs

Dr. C has long discussed the possibly that certain antiviral drugs "in the pipeline" would help treat ME/CFS.  He states that any new antiviral drug gives hope to our community.  In January, 2014, a drug company is expected to launch a new Hepatitis C antiviral drug that Dr. C plans to test on ME/CFS patients. The drug apparently costs, not joke, about $30,000 per month!  No word on how or by whom this experiment would be paid for.

Later in 2014, two other drug companies are expected to drop competing Hep C antivirals.  This should introduce competition in to the market and hopefully give ME/CFS patients two additional chances to find an effective antiviral.  

Other than those three impending Hep C drugs, Dr. C said there is no other "chatter" about additional antiviral drugs in the pipeline. But he noted that this lack of chatter may be because drug companies like to keep such projects secret for fear of being ripped off and beat to the marketplace by competitors.  

                                                                Dr. C's New Findings

Not to bury the lead but.... Dr. C says that he obtained tissues samples from a recent patient of his who, tragically, committed suicide.  The family was kind enough to donate the body to Dr. C's research. (Side note: I'm trying to walk a fine line here because Dr. C states that his findings will be announced at the March IACFS conference and not before then, so I don't want to steal his thunder).  All I can reveal at this point is that Dr. C found a raging enterovirus infection all throughout a major, very critical organ from this deceased patient's body.  (I'm sorry, I can't reveal the organ).  Dr. C is certain that it is the same enterovirus he has been finding in the linings of the guts of his patients for years.  (Although, he noted that this enterovirus was detected by the protein that it produces, not directly by sequencing the virus, which is very expensive.  When and if he ever obtains the funds, he would like to sequence the virus from his organ sample and conclusively prove that it is the same enterovirus from the gut.)

My Revised Game Plan

To quickly summarize my past work with Dr. C: I had success and continue to have success with his oxymatrine treatment called by the brand name Equilibrant.  This helped me improve by about 10%.  But none of Dr. C's additional pharmacological treatments did anything for me, and some had bad side affects.  I've tried Rifampin, Epivir, Amantadine, and inosine among others.

After some discussion, we decided to revisit some of the failed treatments to confirm that the side affects I thought I experienced were truly from the drugs and not from, say, a crash.  So the plan is to, in addition to continuing Equilibrant, take both inosine and Epivir together in combination.  We'll see if that makes a difference this time.

Possible Sad News

Toward the end of the appointment, in the context of another discussion, Dr. C stated that he would like to move on to other areas of research besides ME/CFS.  Then he asked rhetorically, "but then who would take care of my patients? You see, for diseases like HIV where the treatment routine is so well established and understood, a nurse practitioner can be a patient's sole medical provider.  But with this disease, my patients need me to treat them individually."  So it was unclear if Dr. C would actually move on from ME/CFS, or if he was simply expressing the desire to.  

I told him that we need him and that he is practically a celebrity in certain circles and why give that up? I'm not sure it helped... 

Summary of 5th Appointment with Dr. C

I had my 5th appointment with Dr. C today.  For those that don't follow my posts about Dr. C, he is one of the most respected ME/CFS specialists on the West Coast.  And I say that, not to try to impress anybody, but just to make clear that Dr. C is not a typical PCP who knows nothing about ME/CFS.  He is constantly researching it in the laboratory and publishing findings.

We first reviewed the fact that my experiment with the drug Rifampin had failed.  If it had worked, I was supposed to experience a strong flu for several days--indicating that my immune system had kicked into gear--after which I would supposedly feel better.   Instead, it just caused me to crash, starting about two weeks after I had finished taking the Rifampin.  The crash lasted for about 3 weeks, which is one of the longest crashes I have ever had.  Dr. C said that he has had a few other patients (out of more than 70 who have tried Rifampin), who have had these delayed crashes starting 2 weeks after the Rifampin.  To be fair, I don't know with certainty that the Rifampin caused my severe crash, but I can't think of anything else that might have caused it.

With that, Dr. C admitted that he was "out of tricks."  So to review, the first treatment we tried, Equilibrant, worked and continues to work.  I still take 6 tablets of Equilibrant per day.  It shortened my crashes and made them less frequent.  While it didn't make the high's any higher, it made the lows less low and less frequent.

After that we experimented with a number of other drugs & supplements that Dr. C often prescribes in conjunction with Equilibrant, including Inosine, Amantadine, and Rifampin.  The purpose is to trigger the patient's immune system into shifting back toward Th1.  None of them worked.  Dr. C concluded that I'm going to have to wait until we have better drugs to treat ME/CFS.  Since I'm classified as "moderately ill," I'm not eligible for (nor would I want to take) more advanced treatments like interferon and IVIG.  So I'm now on Dr. C's extended appointment calendar, where my appointments will be spread out by at least 6 months to give time for new research developments to happen in between appointments.  Now my next appointment is scheduled in late December.

Dr. C stated that there is a well-known drug manufacturer who, within the last year, hired an enterovirus expert.  He believes they are working on a drug that is specifically targeted toward RNA strand enteroviruses (which Dr. C says is the cause of ME/CFS).  He believes, with time, an effective drug will be developed to combat ME/CFS, but how long that will take is anyone's guess.

Another thing that struck me about our discussion is that Dr. C is absolutely, 100% convinced that ME/CFS is caused by an enterovirus, and he seems to have a small chip on his shoulder about it (in his own, understated way).  At one point he said that he has proved that enteroviruses are the cause of ME/CFS and he seemed almost exasperated that the rest of the ME/CFS medical community hasn't fully recognized his research.  This will be interesting to follow...

Finally, our appointment concluded, as it always does, with a quick physical examination.  Dr. C noted that my left lymph node is swollen.  Swollen nodes are of course common among ME/CFS patients, but I no longer even notice it.  He also noted that the left side of my tongue is swollen in the back, also the result of immune system (Th2) activation.  Since I was feeling pretty decent today,  I was a little bit surprised by this.  It was a good reminder that even when I'm at my baseline and the only symptom I have is fatigue (like today), there are other symptoms that can be physically observed by a doctor even if I no longer even notice them.  I have simply gotten used to living with these discomforts and they are now simply a part of life that I hardly pay any attention to.

Summary of 4th appointment with Dr. C

The great thing about appointments with Dr. C is that he always gives hope for the future. It seems he and his team are constantly working on solutions to ME/CFS, for which he's usually very excited (in his own, understated way).  For instance, today he mentioned that, since March of 2012, he and his team have been going back over drugs that are already in existence and testing them, in a Petri dish, for anti-viral properties.  He said there have been many early, encouraging results, but these drugs won't be ready to try on ME/CFS patients for some time (unspecified).

He also said that there are two new anti-viral drugs scheduled to arrive on the market in the next couple of years that he believes will greatly benefit ME/CFS patients, although he cautioned that one of the drugs will be very expensive ($10-$20,000 per month!).

My overall impression from this appointment was that, while viruses cause ME/CFS, each of us responds differently to treatment because we have different viral loads. It seems that successful treatment is about finding the right combination of antivirals to address each individual's viral load.  (This is my interpretation of the "theme" of Dr. Chia's explanations.)

Amantadine

We first discussed the fact that I had tried adding Amantadine to my usual regimen of 6 Equilibrant tablets per day, but that, after a month's trial, I saw no improvement.  He was not surprised and made a comment later that seemed to indicate that Amantadine may be falling out of his favor.  (For a full explanation of why we tried Amantadine and Epivir, see this summary of my prior appointment.)

Epivir

Next we discussed how I tried Epivir but was forced to quit after only 3 days due to a major flare in my shortness of breath, which landed me in the Emergency Room.  Dr. C stated that he and his team have recently discovered that some antivirals actually increase the replication of certain viruses while suppressing others. Since I haven't had a stomach biopsy and we don't know what specific enterovirus I (may) have, we're doing guesswork at this point. He said that the shortness of breath could also have been a die-off reaction, or it could have been the stimulation of viruses in my lungs.  He said it's not worth testing either theory and I agreed. 

To illustrate the point about antiviral medications having different effects depending on the virus, Dr. C mentioned that patients for whom echovirus 6 and/or 7 is a major contributing factor to their ME/CFS don't respond to Epivir.  Epivir is simply ineffective against echovirus 6 and 7, but very effective against other viruses.

Rifampin

Dr. C then said that he has one more"trick" he can try—one more drug to try adding to Equilibrant—to induce the desired response from the immune system. It's actually an antibiotic called Rifampin. He explained that Rifampin seems to also have anti-viral properties and has worked on quite a few ME/CFS patients when combined with Equilibrant.

When it works, the patient usually feels strong flu-like symptoms within a week or two after starting the Rifampin. After the flu-like symptoms resolve, some patients find that their immune systems have cleared much or most of the viruses.   However, a patient only gets one shot at this treatment. If a patients starts the treatment and does not finish it for any reason, the virus will never respond to the Rifampin if taken again in the future.

Rather than try to remember everything Dr. C said about Rifampin, I have attached an informational handout Dr. C gave to me. (Click the image at the bottom of this post) It appears to be a summary of a presentation he gave at the 2011 IACFSME meeting in Ottawa.  The copy below may be difficult to read as a JPG image.  If you prefer, I can email a PDF version.

If Rifampin doesn't work , Dr. C said the he would probably have new antiviral medications to try at my next appointment in early July.

Different Equilibrant Treatment Progressions

I asked if viruses can adapt to Equilibrant, causing the Equilibrant to lose it's effectiveness   He said yes, it is possible.  For those who respond to Equilibrant he sees three different trajectories.  There are some who begin a steady climb upwards until they are in remission, which he illustrated by a straight line (on an imaginary graph) going steadily upward at a 45 degree angle.  

Other patients improve by about 10 to 40 percent, but then reach a plateau.  (So far, this describes me). The goal for those patients is to find another immune modulator or antiviral drug that will compliment the Equilibrant and bring the patient all the way to remission.  Otherwise, this group continues on the plateau or falls to the third group...  

Finally, there is third group that initially sees a 10 to 40 percent improvement, but then eventually returns down to their previous level of ill health.  He said that most of these patients contract another virus which precipitates the downfall.  In other cases, the person becomes too active too fast after experiencing improvements from Equilibrant, leading to a permanent decline.  

I am slightly concerned that I may end up in this third group given that I live with a germ factory (soon to be two germ factories) known as pre-school age children.  My goal will be to have the best hygiene as reasonably possible when dealing with my kid(s), without becoming a neurotic germ freak.  

Pro-Inflammatory Versus Anti-Inflammatory

I next asked about something that has been confusing me since my first appointment.  When Dr. C explained the Th1/Th2 immune imbalance, he said that the Th1 side of the immune system (the side in which PWMEs are deficient) is the pro-inflammatory side.  He said that Equilibrant will shift the immune system toward a pro-inflammatory response. 

This has always confused me because much of the the literature on ME/CFS focuses on anti-inflammatory treatments. Whether it's diet or reducing pro-inflammatory cytokines, the literature focuses on reducing inflammation, not increasing it.  

Dr. C explained that I was talking about unrelated kinds of "inflammation."  The details were a little hazy, but the take-away was that there is no need to worry about an anti-inflammatory diet working against Equilibrant.  

My Lab Results

For the second month in a row, my lab results show macrocytic anemia (high MCV), now joined by high MCH as well.  Both are barely high (100.4 and 33.8 respectively).

I was about to write that these results, once again, indicate a need to return to a vitamin B12 protocol (which I'm working on.)  But as I was writing this, I quickly consulted Google for additional information about High MCH.  As I typed in "High MC..." Google showed results for "High MCV valacyclovir."  This caught my attention because I am taking valacyclovir.  It appears now that my macrocytic anemia may be a side effect of the valacyclovir.  

Once again, I'm reminded of the complications that arise when one takes a multitude of prescription drugs and supplements.

If you're interested in reading more reports of appointments with Dr. C, my friend Chris McLaughlin has started what will become a series of posts on her appointments with Dr. C, hosted on Cort Johnson's website.  The summaries of my past appointment with Dr. C can always be found by clicking the "Equilibrant" label in the right margin of this website, or by clicking here.  

You can click to enlarge this image slightly.  It you still find it unreadable, I might be able to email the original to you. 

Video Interview with Dr. Chia - A Must-Watch

Below is a two part interview of Dr. John Chia where he discusses the causes of ME/CFS and his recommendations for its treatment.  I may be biased, as Dr. Chia is my treating physician, but I strongly believe that every PWME and their friends/loved ones should watch these videos.

The interviewer is journalist Lewellyn King of PBS fame.  King has taken an interest in CFS in recent years, as seen in these interviews and on his website.  (King's article "Chronic Fatigue Syndrome and Its Chronic Costs," linked above, is also worth reading.)

You may wish to watch a larger version of these videos by clicking the YouTube symbol in the lower right corner of the screen and watching the videos directly from YouTube.  

PART 1

                                                                            PART 2

Three Keys to My Recent Improvement

First, I want to clarify that I am not "all better."  I realized, reading my recent posts, that it wasn't entirely clear whether I was saying I'm "better" as in "all better" or better as in "improved."   It's definitely the latter. (The word "better" can cause all sorts of confusion, as I've learned from communications with my friends and family).   I have jumped up to a new plateau that is perhaps 5 or 10% better on average than I was before.  But I'm still quite limited in what I can do.  I fact, I realized after trying to work yoga back into my weekly routine that I'm not yet ready for serious exercise.  Even relatively light yoga set me back temporarily.

The good news is that, even if I regressed to my previous level of illness tomorrow, I'd still feel encouraged just knowing that this type of improvement is possible.  I'm aware that the CFS message boards are full of long-time CSFers who experienced extended periods of improvement, followed by remissions.  So I don't think I'm out of the woods by any means.  I'm just trying to enjoy my improvement for as long as it lasts and, with any luck, build on it.

Key 1 - Equilibrant

First, how do I know what caused my improvement?  The short answer is, I don't know for certain.  Nothing is 100%.  Maybe I would have improved had I done nothing.  But I think I can be fairly confident in my assessment based on the timing of various improvements compared to the initiation of treatments.  And when I skip a dose of these treatments and experience a setback, it confirms my initial suspicions.  There's also a small amount of intuition involved.

By taking Equilibrant, which I've discussed at length in past posts, I believe I laid the groundwork for further improvement later.  By itself, Equilibrant didn't lead to any tremendous improvement, but it stabilized the situation.  Prior to Equilibrant, my crashes were more severe and lasted longer.  But as I reported to Dr. C, I didn't feel that it was necessarily making the highs any higher.  Rather, it muted the lows and made them less frequent.

Key 2 - Infrared Sauna

Later, when I added the far infrared sauna to my routine, I took a significant step forward.  Building on the groundwork that the Equilibrant laid by modulating my immune system and stabilizing the situation, the infrared sauna actually raised my daily health average, so that my highs were higher (on top of the lows still being less severe).

Key 3 - Thymic Protein

The third factor is that I increase my dosage of thymic protein whenever I start to feel rundown or that a crash might be imminent.  I had been taking thymic protein occasionally for almost a year, but usually only one packet per day when I was feeling most ill.  More recently, I increased the dosage to the maximum of 3 per day (but again, only when I start to feel crash-y).  This seems to further shorten and blunt any crashes that might have designs on ruining my day/week.  The increased dosage was suggested by Dr. C (but only after inosine and several other Equilibrant co-factors failed).  

If I had to rate the importance of these three treatments, I would say: (1) Infrared sauna, (2) Equilibrant, and (3) Thymic protein, although, #1 and #2 are very close.  I'm not sure that either the sauna or the Equilibrant would have worked without the other, but that's only a hunch.

It seems that every PWME responds to different treatments depending on the etiology of his/her particular brand of ME/CFS.  So this trifecta certainly won't work for everyone, or even anyone but me.  And of course there's the usual caveat that I'm not a doctor and you shouldn't rely on any advice from me in forming your own treatment plan.  But maybe this will give others some ideas of possible treatments to discuss with their own doctors.

A rough graph of my improvement compared to the initiation of 'the key 3' treatments

Now, if you had told me a year ago that I would achieve this kind of moderate improvement, I would have been ecstatic.  But I think it's human nature to always want more.  I'm of course not satisfied, and I probably won't be unless/until I can do everything I used to do.  However, if ME/CFS has taught me anything it's patience.  If I have to bide my time and continue with my supplement/sauna routine for several more years before I (hopefully) take another step forward, I will gladly stick with it.  

Finally, I should mention that these three treatments aren't my only treatments.  I still take a number of other supplements, but I believe that these supplements are less important.  What I don't know is if they somehow made the improvement possible by, again, "laying the groundwork."  Over time, I'll have an opportunity to experiment with slowly cutting back on some of these other supplements and gauging the results.  And of course, I'll report what happens here.  

As always, thank you for reading, and I wish you the best of luck on your journey toward improved health.  As you know, except for a handful of dedicated and dare-I-say saintly doctors, we're mostly on our own with this complicated illness.  I wouldn't have found any of these three treatments without the knowledge I picked up from the message boards and blogs (that's how I learned of Dr. C too).  So I encourage others to share what works for them if/when they find something.  

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.

Amantadine

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

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 patients...in 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.  

Summary of Latest Appointment With Dr. C

On Thursday, I attended my second appointment with Dr. C, who is one of the more well-respected ME/CFS doctors and researchers on the West Coast.  (For a recap of my first visit to Dr. C, click here.) This appointment lasted 49 minutes from the time Dr. C entered the exam room - impressive.

Equilibrant

We started off by discussing how I'd been faring since the start of a course of Equilibrant two months ago.  I explained that, while May was statistically my best month since I started keeping records in September, I seemed to return to average in June.  I explained that, in June, I ran out of ImmunoStim because of a temporary shortage, and that this could explain the dip.  In other words, I wondered if the combination of the two herbal immune modulators was responsible for my improvement in May.  

Dr. C seemed skeptical, citing a lack of studies showing effectiveness of the herbs used in ImmunoStim -  mostly maitake and beta glucan.  But he said it was possible that the two were having a synergistic effect.  We agreed that the only way I'd be able to draw a conclusion was is if I improved again after resuming the ImmunoStim.  (Incidentally, I received a new shipment of ImmunoStim last Wednesday and am, again, feeling better on a combination of the two, although it's only been a few days).

One a side note: Even though June was an average month, the Equilibrant seems to have flattened out the peaks an valleys.  So while my highs weren't as high, my crashes weren't as low.  I'm not sure if that's a good thing or not. 

Inosine

Dr. C said that when people don't respond to the Equilibrant alone, he recommends that they add Inosine.  Inosine is a precursor of ATP, and is commonly advertised to athletes to improve their workouts.  It is available over the counter, and in fact, I've since ordered 90 tabs from Amazon for about $10. 

He said he hasn't been recommending the inosine for as long as the Equilibrant, so his sample size is smaller (50 compared to over 800).  However, of the 50 patients to whom he has recommended Inosine + Equilibrant, 40% have shown substantial improvement.  

Just like with Equilibrant, one will know if it's working if he/she gets a flu-like reaction for the first 2 or 3 days after taking it.  (That's exactly what I experienced every time I increased my dosage of Equilibrant, until I reached a plateau at 5 pills a day.)  

Unlike Equilibrant, however, one can develop a tolerance to inosine -- much like one develops a tolerance for alcohol.  For this reason, Dr. C gives patients the option of "pulsing" their doses.  For more severely sick patients, typically the pulsing does not help - so he recommends a constant daily dose.  But for moderately ill patients like myself, he recommends taking two inosine tabs, twice a day (4 total), for a week and then taking three weeks off.

Incidentally, he mentioned that Dr. Cheney also recommends pulsing inosine, but on a different schedule (2 days on, 3 days off).

Apparently, a possible side effect of inosine is an increase in uric acid, so a doctor should monitor one's levels.  

Amantadine

Dr. C said that, by the time of my next appointment in two months, he'll know whether the drug Amantadine is going to be the breakthrough that he hopes it will be.  Amantadine is a drug for Influenza and Parkinson's disease, but there is some suggestion that it may be effective for ME/CFS when combined with Equilibrant.  

[We're getting into an area now where Dr. C lost me a little, but I'll do my best to explain what I thought he said.  This part also assumes that Dr. C's enterovirus theory of ME/CFS is correct.]  

The enterovirus has a protective mechanism where it "hides" when it's not replicating -- I believe, inside of a shell(?) - although this is unclear.  When the virus replicates, it releases new viruses outside of the shell, "like a dandelion releasing seeds into the wind."  So the Equilibrant helps the immune system kill the new viruses before they attach, but it still can't get inside the shell and kill the established viruses.  

But, it is thought that Amantadine may be able to get inside the shell and cut the RNA strand enterovirus off where it attaches.  If I understood Dr. C correctly, this could be an important breakthrough.

Personally, I take an "I'll believe it when I see it" view of this information.  It seems we're often hearing about new potential breakthroughs, none of which have panned out so far.  But it's nice to know that there's hope!

The Work Issue

For those that read my blog regularly, you know I've been struggling lately with the issue of what to do about work.  Should I continue to work full time?  Cut back to part-time?  Or quit completely?  I've received some conflicting (but well intentioned and always appreciated) advice from others on this issue.  For instance, my other CFS specialist, Dr. W, said he saw no reason to stop working.  But other PWMEs (who I probably trust more than Dr. W) have warned that I could be squandering my best chance to recover.  

Dr. C said that in his experience, it doesn't matter whether one works or not.  He said that the only predictor of the progression of one's ME/CFS that has ever been shown to be reliable is the severity of the initial infection.  If one's initial infection is 10M viruses, and the body's initial immune response kills 60% of them, that leaves 4M viruses left (which apparently is a lot.)  But if the initial infection is only 1M viruses, and the immune system kills 60%, the remaining 400,000 can be somewhat controlled by the body's weakened immune system thereafter.  

Dr. C also said he has had patients go both routes -- quitting work and not.  Of course, many of them do not have a choice because they're simply too sick to work in any capacity.  But he said that for those who did have a choice, it hasn't seemed to have made a difference in their disease progression.  Those who stopped working, hoping to recover, did not recover.  And those who continue to work usually don't decline further because of the work.

However, he did caution that if I felt myself getting worse because of work then I should stop or cut back.  So, this one little hesitation on his part -- this hedging -- leaves the question open.  I'm going to continue to consider the problem and gather others' input.  And of course, most importantly, I'll continue to monitor and track my own health closely.  

A Note about Cytokine Profiles

I asked Dr. C if there was any blood test that would help track whether the Equilibrant was, in fact, shifting my immune system toward Th1.  He said that there wasn't anything reliable, and that we have to stick to patient self-reporting of symptoms.  During this discussion, he mentioned that Dr. Klimas runs cytokine profiles, but that he didn't think these were helpful.  First, let me be clear: Dr. C is friends with Dr. Klimas and obviously has an enormous amount of respect for her based on the way he talks about her.  But on this issue, they respectfully disagree.  Dr. C feels that cytokine profiles will always be wildly different, even among PWME's, because of the different etiologies of each of our conditions, and the way the viruses attack different parts of the body.  For this reason, he doesn't believe that cytokine profiles are useful.  

I have no opinion on this because I haven't looked into it myself, but I thought the difference of opinion between these two researchers was worth noting.  

Prognosis

Just as I did with Dr. W, I tried to pin down Dr. C as to exactly what he thought my chances of achieving full remission were.  He confirmed what I'd basically already worked out for myself: with the current state of medical knowledge, "very few" people go into remission.  In reality, (and I'm paraphrasing) people achieve some semblance of a life by a combination of modest improvements through treatment, and learning to adapt to new limitations.  

This doesn't mean I'm giving up hope.  I think it's possible to be both realistic and hopeful at the same time, which is what I've been striving for all along.

[9/12/12 update: for an updated post after my next visit to Dr. C, click here]

Measuring Improvement, Part 2 - Monthly Averages

On June 19th, I posted my concern about whether I was actually improving due to the prescriptions and supplements I'm taking. While I have the overall sense that I may be slowly improving, I wasn't certain if the numbers would support that.  Now I've had a chance to calculate monthly averages from my health chart, starting from September, 2011.

First, a few notes about my health charting:  Among other things, I chart an overall daily health rating on a 1 to 100 scale, using multiples of 5.  My scale is a little different than others, as I think it is skewed to the high end.  100% is how I felt on my worst days while healthy.  I set the bar low for what I consider 100%.  So for a healthy person reading this, an 80% rating may sound pretty good, but I assure you, it feels like I have a mild to moderate flu....all day long, usually with kidney pain and shortness of breath.  

My "crash" cut-off is generally around 70%.  Anything lower than that often means I'm house-bound for the day.  50% or below often means I'm bed bound for the day.  0% is dead. 

After reading many, many stories of people with severe ME who can barely left their heads from the pillow, I left myself plenty of room at the bottom of the scale.  Hopefully, it will never come to that.  The worst I've ever rated was 40%, which only lasted two days.  Most days fall between 60 and 85%.  The highest I've rated was 95%, perhaps 8 to 10 times.  I use objective measures to try to prevent these ratings from becoming biased over time.  

In the Notes section below, any supplements or drugs noted were begun at or near the beginning of the month. 

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.            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.

The average of all these monthly averages is 77.15.  So any month above that average I'll consider a good month, and anything below is a bad month.  Overall, I appear to be holding steady, more-or-less.  But, there are a couple of theories I might derive from these averages:

My two best months, and the only two months with averages above 80% (Dec. and May), were the two months when I began taking herbal anti-virals (ImmunoStim and Equilibrant, respectively). Although it's still too early to make a final determination about Equilibrant, I wonder if these antivirals produce an initial rally by the immune system, only to allow the immune system to adjust and settle back into a dysfunctional state.  Others on ME/CFS message boards have espoused this theory too.

It's also possible that the dip from May to June was due to my running out of ImmunoStim, which is currently on back order.  The combination of the two herbal antivirals seemed to be working well for me in May, and the dip in June coincided with my running out of ImmunoStim.  Only further evaluation and testing will tell.  I'll update this in a few months.

I also note that, for the most part, my swollen lymph nodes and weekly sore throats went away in December when I began taking ImmunoStim, so do I believe it has been effective.  I also believe the Equilibrant may be flattening my peaks and valleys, making each day more predictable, but not necessarily improving the average.   


I can't honestly say that the B12/methylation protocol has helped at all, but I may try tweaking it.  

Equilibrant update

For those new to my blog, I started a treatment called Equilibrant a little over a month ago.  This was at the suggestion of my doctor (Dr. C), who is one of the better known ME/CFS researchers on the West Coast.  A summary of Dr. C's theory regarding immune imbalance and Equilibrant is here.

I'm not ready to declare the Equilibrant a resounding success, but I believe it may be working.

I am still ramping up the dosage.  Each week, I add one more pill per day.  Currently, I'm taking 5 per day, where the maximum dose--and Dr. C's recommendation--is 6.

Before the Equilibrant, my cycle of crashes and recovery was fairly predictable.  I would typically experience 3-6 days of crash, followed by 3-6 days of recovery.  And the cycle would repeat.  Dr. C said that if the Equilibrant is working, the crashes would gradually become less severe and of shorter duration.

In the middle of May, I had a week-long crash that was just as severe and just a long as an average crash before the Equilibrant.  But, if we take that crash out of the picture, I've had a pretty good 5 weeks.  True to Dr. C's word, I've had many periods of recovery which were followed by what felt like the onset of another crash.  But the full-blown crash would never materialize.  Instead, a half-baked crash would set in, hang around for a day or two, and then lift.

Another hopeful sign is that I've experienced a brief start-up reaction every time I've increased the dose.  Dr. C said this would happen if the Equilibrant was indeed nudging my immune system toward Th1.  Within 3-6 hours of increasing the dose, I feel flu-like symptoms.  The interesting thing is that the symptoms are a different "flu-like" feeling than when I crash.  They come with muscle aches and tenderness in my neck, which is not what I typically experience when I crash.

Having said all that, I still think it's too early to attribute my modest improvements to Equilibrant.  I've certainly had other good streaks before the Equilibrant, although maybe not this good.  I'll update again in another month or so.  Eventually, I'll have my Natural Killer Cell activity tested again, which will provide a more objective measure.

Way-too-early update on Equilibrant

I've been on Equilibrant for two weeks, and although it's probably much too early to draw any conclusions, that's never stopped me in the past!  I'm up to two pills a day, which is only a third of the maximum daily dose, but I believe it might already be having an effect.

Dr. C warned me that I would feel flu-like symptoms when I started taking Equilibrant, and that I would feel those same symptoms every time I increased the dose.  Sure enough, within a few hours of my first dose, I felt strong flu-like symptoms.  These symptoms lasted for about 3 or 4 days.  (Skeptics will say that I was simply experiencing a placebo affect, but I know I wasn't.)

The remarkable thing was that, at the time I started the Equilibrant, I was experiencing the unmistakable beginnings of a cold--a sore throat and sniffles.  I became more than a little distressed at this because I'd already had two colds since the beginning of the year and, due to my weakened immune systems, they proved to be very resilient foes.  Well, this time, a full-blown cold never materialized.  I believe--but, of course, can never prove--that the Equilibrant kicked the Th1 side of my immune system into gear and defeated the cold.

After the initial flu-like symptoms disappeared, I enjoyed about a week of excellent, high energy days. I almost felt normal again.  In this middle of this high-energy period, I increased my dose to two tablets per day.  This time, I did not experience the flu-like symptoms like I had previously.  But, on the fifth day after increasing the dose (which was yesterday), I had a moderate crash.  I remain crashed today, as I write this.

Dr. C never said I wouldn't have any more crashes.  Rather, he said if the Equilibrant is working, my crashes should gradually become less severe, and less frequent.  So far, I cannot tell if this crash is any less severe than normal--perhaps a little.  But then again, I'm only at 2 pills per day.  My typical crash lasts 3 to 6 days, so if I'm feeling better by tomorrow evening, I will take that as a good sign.

In the meantime, be well and I'll see you in the next post.

Further information on Th1/Th2 imbalance...

I recently came across this article describing Dr. Cheney's theory of Th1/Th2 imbalance.  It is remarkably similar to my doctor's explanation (Dr. C), but adds a few interesting twists.

What's great about this article is is that it suggests six other supplements/prescriptions that can help shift the immune system back to the Th1 side.  (None of them are Equilibrant).  So it's good to know that I have other options if the Equillibrant fails; or, options to add to the Equilibrant if the Equilibrant works but doesn't take me completely into remission.

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.