The Fibrochondriac

Currently there’s quite a bit of chatter about XMRV and the impact it may have for those of us with Chronic Fatigue Syndrome and Fibromyalgia. XMRV is a retrovirus. Similar to HIV.

It’s possible that this discovery could lead to a cure or a vaccine against these disorders. Or at least an answer as to what caused these disorders. Wouldn’t that be nice? It would be nice for those of us who have these disorders. But for the industry that has sprung up, and is making good money, to treat us… I don’t think they’re liking it too much.

All this talk reminded me of the time back when my fibromyalgia symptoms got very bad, towards the end of 2007. I was looking for anything that would help me get better and continue working. I had just gotten married, bought a new house and had a life and I didn’t want any of that to change, so I was grasping at anything that would help.

My primary care provider, a nurse practitioner, was amazingly competent in dealing with fibromyalgia. She has a sister with fibro and she put a lot of effort keeping herself up to date on possible treatments. That’s why she was willing to put me on narcotics while we tried to find something that would help. We went through so many drugs…but I just couldn’t handle the side-effects of most of them and none of them did much to relieve the pain.

Nothing helped with the short-term memory loss or my other cognitive problems. No matter what she did, I was going downhill fast.

My Trip to the FFC

So when I “discovered” the “Fibromyalgia and Fatigue Centers, Inc” (FFC)  I didn’t do much in the way of research on them. To me, the name said it all. I wanted to get better fast and if their name had “fibromyalgia” in it, they must be experts, right? So I jumped ship on my nurse practitioner and called to make an appointment with the Fibro and Fatigue Center in Bellevue, Washington.

The center had just hired a new additional doctor, so I got right in. The doctor was not a local. I think she was from somewhere in eastern Europe and her accent was quite firm. But she knew her role and her patter. She was spitting out script at me and making me feel like she had all the answers. She spent about an hour talking to me and examining me.

She explained to me (as the assistant later translated) that Dr. Teitelbaum, the Medical Director of FCC (and the author of “From Fatigued to Fantastic” and “Pain Free 1-2-3″) had developed an immune system-boosting protocol that helps 91 percent (that’s over 9 out of 10) of their patients. She felt certain that if we got rid of the yeast in my system, fixed my thyroid and put me on natural hormone replacements I would be in that 91 percent of the fixed patients. Oh, well of course, sign me up!

So off I went to their in-house blood-takers. And oh my I gave blood. Thirty two different vials. But that wasn’t enough. They wanted urine, spit, poop, the works. Fun, huh?

After that, the “assistant” sat me down and had a talk with me. She explained everything the doctor had been telling me but I hadn’t been actually catching, because of the accent.

This time I got it, along with the price tag. Expensive? Oh yes. Did they take insurance? Oh no. That one hour visit with the doctor I didn’t understand? I think that was somewhere in the three to four hundred dollar range.

And then there was all the supplements that I needed to purchase from them in order to start me on the path to wellness. My body needed to be cleansed of the yeast, my nutrients needed to be upgraded and my immune system needed to be pumped up. Several hundred dollars later, I was told I could have an optional IV…they offered one for pain and another for cognitive difficulties. That was another couple hundred dollars a shot. Literally. I chose the cognitive IV (of course).

So after hanging out for another hour while the IV dripped, we scheduled another appointment for me to come back and get the results from all my tests. That visit would be less expensive. But still triple digits.

The IV gave me a bad headache that lasted a couple of days. No improvement in cognitive abilities noted. According to the nurse the effect was cumulative so I’d have to have several of the triple digit IVs before I’d really notice anything.

I started taking the supplements I was sold. I remember I started with a berry flavored drink ( with all my necessary vitamins and minerals, along with some other whiz-bang stuff) along with a B-vitamin pill. Along with a multitude of others…

And then there was the prescription to kill off the yeast. I was to take that at night so I wouldn’t get nauseous. That didn’t work out so well. After the first couple of days I had to give up on those pills because I was throwing up all night long.  Not fun.

I got results!

Only a week went by when I got a phone call from the FFC. They had found a problem with my lab work results and I needed to be seen ASAP. So I dragged my husband in there with me. Maybe an answer at last?

The doctor explained, while the assistant translated, that I had some strange lab results that precluded them from working on me. So I would not be getting the natural (real versus horses urine) hormones or natural thyroid medication that they said would help me fight off the fibromyalgia symptoms.

Instead, because of the odd lab work, I was being sent to a gastroenterologist who had to do his thing. More blood work and a liver biopsy. But nothing was really that wrong with me…

Which, at that point, was fine by me. At this point, I’d spent several thousand dollars, gotten a headache and thrown up a bunch. And I really didn’t have all that much faith in the FFC.

I was having side-effects from their recommended supplements and prescriptions but not seeing any particular benefit. And they really couldn’t do anything more for me because my lab work was screwy.

By the time my lab results were back to normal, the eastern European doctor had quit FFC. And the main doctor had taken off to start her own practice. There were no doctors left at the Bellevue FFC. So that was pretty much the end of that story.

And now Dr. T’s opinion on XMRV

That was a couple of years ago. But I’ve noticed that Dr. Teitelbaum has been in the public quite a bit recently.

He’s been on the “Dr. Oz” show. He also has a blog in Psychology Today (of all places! Chronic Fatigue and Fibromyalgia are not psychological disorders…haven’t we made that clear enough yet?) where he talked about XMRV.

The post I’m referring to is entitled “Some Perspective on the XMRV Virus; Is XMRV just the latest CFS “infection of the month?” In which he is concerned that the XMRV research “not blind us to the rest of the research in the field.” And that “…with XMRV simply being one of many infections and problems in this illness…”

Excuse me?

So according to Dr. T XMRV is just a virus. One of many infections. What part of “retro” did he miss? This is not an ordinary “normal” virus. Retrovirus. Like HIV. This is a possible cause for Chronic Fatigue and Fibromyalgia. NOT a “normal” virus.

IT. IS. A. BIG. DEAL!

Because it Messes with his Protocol

He continues to downplay XMRV as just another virus that can be treated by his protocol.  Because to do otherwise, would mess with his protocol. And the focus of his protocol is to “boost your immune system”.

Dr. T’s current protocol isn’t going to kill off that retrovirus. Why?  XMRV is a retrovirus, similar to HIV. HIV cannot be killed by the current methods of “helping” their immune system. So it stands to reason, it won’t do much good against XMRV. ( Oops, did you hear that? The sound of Dr. T’s profits falling…!)

So somebody needs to tell Dr. T and FFC that XMRV is not “just another” virus, the products they sell are not effective against this retrovirus and to say anything else is looking for a malpractice suit.

I’m glad my lab work was screwy and FFC couldn’t continue “the relationship” with me. And after I went back to my nurse practitioner, she told me she’d sent at least a dozen patients over to the Fibromyalgia and Fatigue Center. No one was the better for it.

Guess they all must have been part of the nine percent that aren’t helped by Dr. T and FFC’s protocol.