What Happens in Vagus, Stays in Vagus: ME/CFS a viral infection of the vagus nerve?

This article from the HHV-6 Foundation website describes recent research suggesting that ME/CFS may be due to viral infection of the "vagus nerve," a cranial nerve that controls all sorts of important functions like heart rate, blood pressure, and the ATP cycle.  (See, Wikipedia here)

"Herpesviruses and certain intracellular bacteria establish latency in the vagus nerve and reactivate during periods of stress or illness, causing the release of proinflammatory cytokines. HHV-6 is a highly neurotropic virus and potent inducer of cytokines such as IL-6 and NFkB, which many groups have proposed as an etiological theory for the role of HHV-6 in neurological conditions such as seizures and epilepsy. If this low-level “chronic” infection is localized to the vagus nerve it would be undetectable in the plasma, but could be demonstrated through analyzing tissue biopsies of the vagus nerve, VanElzakker suggests. HHV-6 is well known for invading the hippocampus and other parts of the limbic system, and also establishes residence in the human sensory ganglia along with other neurotropic herpesviruses including HSV-1 and VZV (Hufner 2007)."  HHV-6foundation.org

One problem with testing this theory is that viral infection of a nerve cannot be detected through simple blood plasma samples.  That appears to be why the researcher behind this theory, Michael VanElzakker, proposes testing the theory by taking tissue samples from PWMEs who have "died prematurely from other causes."  Apparently, what happens in vagus stays in vagus.

Trying to rule out Lyme when you have ME/CFS: not easy!

When you have ME/CFS, from time to time, people will suggest that you might actually have Lyme disease.  The symptoms of Lyme are virtually identical to ME/CFS.  In fact, Dr. Paul Cheney apparently believes that ME/CFS and borrelia infection (the bacteria that causes Lyme)  are "exactly the same" illness.  He states that borellia just happens to be the trigger of ME/CFS's cascade of symptoms for some, while for others, the trigger is some other pathogen.  Basically, there are different routes to the same destination, borellia being just one of many.  (Again, this is an oversimplified paraphrasing. The full comment can be heard here at 13:00 to 16:32)

If that's the case, does it matter if you have Lyme of ME/CFS?  Yes, actually it does matter because your treatment options will differ if borellia is at the root of your illness.  In that case, long courses of antibiotics are usually indicated.  But if you don't have borellia, or some other chronic bacterial infection, most doctors will tell you to stay away from long courses of antibiotics.  Antibiotics will destroy your "good gut bacteria", potentially weakening your immune system, so it's best not to use them unless necessary.

So it becomes pretty important to know if you have Lyme or not.  But of course the problem is that Lyme tests are notoriously inaccurate.  My results to a Western Blot test were negative, but if you believe some, that means virtually nothing.  People will tell you that you have to find a really good LLMD (Lyme literate medical doctor) for a diagnosis based on a clinical evaluation.  I'm extremely skeptical of this.

Without a specific recommendation from someone I trust, I can only search the internet for so-called "Lyme experts" in my area.  There are a few.  But when I look carefully about what other patients are writing about these doctors, it seems that they basically diagnose anyone with a pulse with Lyme disease.  I don't want some B.S. diagnosis just for the sake of a diagnoses.  Call me crazy, but I want to know whether I actually have borellia in my system or not.  You wouldn't think it would be too difficult to get an answer, but apparently borrellia is just that tricky.

In the absence of an easy answer, I had recently decided to ignore the Lyme issue for now while I worked on other issues (like methylation).  But, as luck would have it, my friends at HealClick recently posted this great piece on more advanced Lyme screening options.  It really is worth the read.

I do wonder how difficult it will be to get one or more of these tests ordered, however.  I will look into it at upcoming doctor appointments and update this post later.

Article: Are B-Cells to Blame for ME/CFS?

Building on my last post (the article about methotrexate), Discovery Magazine's new May, 2013, issue includes an article highlighting research which suggests that defective B cells may be responsible for ME/CFS.  This theory has been receiving considerable press lately.  It's hard not to get a little excited by the hub-bub, but at the same time, one hopes that all the excitement is because there's really something to this theory and that it's not just another XMRV-like disappointment.  

ME/CFS explained in simple terms

As I'm sure most of us have, I've read dozens, maybe hundreds of attempts to explain ME/CFS.  I know from experience, it's no easy task.  This illness is so complicated that if you try to simplify it, you downplay the seriousness, but if you try to explain it in its full 'glory', you'll likely lose your audience.

This is one of the clearest and best I've read at least with respect to the role of cytokines—although a bit oversimplied.  A highlight is excerpted here, but the whole article is worth perusing if you have time:

"With an infection, the body jumps into action to defend itself, but usually not for several days. For example, if you are in the checkout lane at the grocery store and the person next to you coughs on you, you breathe in the flu virus. The virus particle lodges in your airway and begins to multiply; yet you feel just fine. In fact you feel fine for three days or so (the incubation period) even though the virus is growing like mad. Then, Saturday afternoon, at exactly three PM, you come down with the flu: fever, headache, aches and pains, exhaustion, sore throat, nausea… What actually happened on Saturday was that your body recognized the attack by the flu virus and began making cytokines to begin the counter-attack. And the cytokines make you feel sick.             

You stay in bed for a few days while the battle rages. The battle is carried out on several fronts and after the immune system makes antibodies the infection is brought under control. When that happens the production of cytokines slows down, stops, and you feel better. A few more days and you are back to normal, if everything goes right.            

The production of these cytokines, (specifically interferon, IL-1, IL-6, and TNF) is known to cause the symptoms of illness, often called “acute sickness behavior.” This term does not imply that there is anything artificial or psychological about the behavior, it is as real as limping behavior in a person with a broken leg. These effects of cytokines were discovered during trials where the cytokines were given to healthy volunteers who then developed fever and other symptoms.            

 In ME/CFS something goes wrong. The infection may be an ordinary “garden variety” virus, an enterovirus, or the Epstein-Barr virus of mononucleosis. But in a person with the genetic vulnerability the process does not shut down and the flu-like sensation persists for months, years, sometimes for the rest of his or her life. It is this abnormal mechanism that is the center of attention in ME/CFS.            

The symptoms caused by cytokines differ from “end organ” symptoms. For example, weakness is a common symptom in ME/CFS, but muscle testing with electrodes does not indicate muscle fiber disease. Characteristically, the sensation of profound weakness is experienced by those persons given cytokine injections despite normal muscles. Confusion and problems with memory and attention are symptoms caused by cytokines and in experimental subjects, when the cytokine wears off these cognitive symptoms resolve without damage to brain cells (presumably). It is precisely because these symptoms are not caused by diseases of muscle or joint that medical providers have ignored them. If you go to the doctor with a cough caused by the flu you are patted on the head and ignored, unless you cough up gobs of lung tissue. Then it is taken a little more seriously."

Of course, this is just part of the big picture.  It doesn't address the endocrine issues, mitochondrial dysfunction, myalgias, neurological issues or any of other symptoms we experience.  These other symptoms are only alluded to in the full article as being a downstream result of the "abnormal cytokine cascade"—but it's a good start.

I like how the author begins by relating ME/CFS's origins to a normal cold/flu, which is a great starting place for readers who haven't studied ME/CFS.  When explaining ME/CFS to someone who doesn't have it, it helps to start with something they can understand and relate to, and build from there.  The next time I have to explain ME/CFS to healthy person, I'll start with this article.

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

Stomach Medication = Candida Overgrowth

In my 12/20 post, I discussed my theory that years of acid reducing stomach medications may have contributed to my ME.  It turns out I was right.

Yesterday I visited my ME/CFS specialist (Dr. W) to discuss the results of a recent blood panel.  Of the several infections contributing to my ME, the worst, in terms of antibody titers, was Candida Albicans.  Candida is yeast that often grows out of control in the stomachs and intestines of people with ME.

After the appointment, I hit the internet to learn more about the causes and treatments for Candida overgrowth.   One of the top Google links was this page, about the risk of "proton pump inhibitors" (acid reducing stomach medications) leading to Candida.  Of particular interest was the following:

"...A significant lack of stomach acid may also result in proliferation of Candida and other yeast fungus organisms...

Treatments to Avoid
....Of the two varieties of stomach acid suppressors, proton pump inhibitors are the most potent. It takes only one of these pills to reduce your stomach acid secretion by 90 to 95% for the better part of a day....Before considering an antacid, I urge you to look up the possible adverse side effects of these and other drugs, because many of them can be quite serious." 

I wish I'd known this a few years earlier.

It's hard not to feel as though my medical care providers failed me, especially the doctor who continued to renew the prescription for 5 years, and the pharmacy for doing the same.  It's an example of why you have to be your own gatekeeper and not rely completely on your doctor's advice.

What triggered my M.E.?

In my 12/18 post, I discussed my doctor's analogy describing M.E. as a "blown fuse" in the hypothalamus.  In yesterday's post, I mentioned one possible contributing cause to that blown fuse: my Gilbert's syndrome.  I want to mention 2 other possibilities.  I don't think these possibilities are mutually exclusive.  It may have been a combination of these factors that overloaded the system and caused the fuse to blow:

1.  Stomach acid medication:  Prior to 2005, I had some severe stomach pains.   So, for about 6 years, from 2005 through early 2011, I took a prescription medication called Nexium to reduce my body's production of stomach acid.   I finally stopped taking the Nexium in April 2011 when I realized that I was fine without it.  Whatever stomach issues I once had were gone.

It wasn't until after I came down with M.E., and started researching, that I discovered that medications like Nexium (the so-called "proton pump inhibitors") also block the body's absorption of vitamin B12.  For those familiar with M.E. research, vitamin B12 deficiencies are found in a large percentage of those with M.E., and many treatment protocols call for the replenishment of B12 (among other things).  And by the way, I came across this information by accident, when searching for causes of B12 deficiency.  It wasn't as if I was actively looking to blame everything on Nexium.

As if that weren't suspicious enough, I've also learned that stomach acid is often referred to as the body's "primary defense" against infection.   Given that many researchers attribute M.E. onset to an overload of viral and/or bacterial infections, which overwhelm the system and "blow the fuse," it seems that a reduction of this primary defense could have been a key factor in my contraction of M.E.  It's as if I'd built a castle with the highest walls and deepest moat, but forgot the most obvious thing...to close the front door.

2.   TDAP Immunization.  After fighting off an initial wave of symptoms in June, I seemed to have recovered to about 95%.  I stayed at somewhere between 95-98% for the next three weeks.  So, towards the end of that period, I figured it was safe to get my TDAP shot.  (I was running out of time before my daughter was to be born).  Previously, my doctor had advised me to wait until I felt better to get the immunization.  Since immunizations involve the injection of "killed" viruses into the body, it is not a good idea to get an immunization when one's immune system is already working on another problem.  Well, I figured I was safe getting the injection when I felt 95% recovered.  A few days later, I came crashing back down.

I'll also note (and again, this is anecdote), the books and message boards are full of people who say they came down with M.E. after getting immunized.

In the end, it could easily have been something else.  I'll probably never know, but maybe it's better that way...