Random thoughts

It is difficult to imagine how XMRV is being dismissed as a lab contaminant by some supposedly intelligent people despite the publication of the following three papers in The Journal of Urology:

The recent paper Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. Schutzer/Natelson contributes to the literature supporting a biological basis for both CFS and chronic Lyme Disease. The authors believe that treatment resistant Lyme Disease is a distinct entity from CFS, and in my opinion, that is not likely. The Lyme group probably met inclusion criteria for the CFS group, but it isn’t clear from the paper. There was much overlap of “proteomes” between the groups, which makes sense, as there are probably some CFS patients without Lyme and possibly some treatment resistant Lyme patients without CFS, whatever “CFS” is. A better explanation than two distinct diseases is that the immune deficit from the underlying retroviral infection causes Lyme to be a bigger problem than it otherwise would be. As I’ve said before, the very few clinicians who care for both groups of patients find them clinically indistinguishable. My impression is that the patients who wind up in the Lyme group are sicker and have more pain, either from neuroborreliosis or excessive treatment, very hard to say.

I love the meeting place feeling that is developing here. There are now well over a thousand comments on this blog. I haven’t moderated it at all. There has been no spam (knock on wood). The comments have been insightful, compassionate, funny, sad. They often stimulate me to write more. They demonstrate that the patients get it, even if most of the scientists and doctors don’t. I’ve removed only two comments, directed at someone else, that were over the top. The invisible counter shows it’ll hit 150,000 pageviews, at a year next month, from six continents. Parts of it have been translated into German and Spanish. It has been discussed and linked to in many languages, some of which I don’t recognize. Every post is read by thousands of people in a few days. It doesn’t cost a dime. The internet is an amazing thing. We would all be alone and powerless and we’re not. Personally I think FaceBook and Twitter are really creepy, but they are powerful enough to bring down dictators, so should be used to our advantage.

I continue to communicate with many patients by email and phone. My impression is firmer than ever that the people who have done very little are doing better than the people who have pursued aggressive or experimental treatments. Radical avoidance has worked to control symptoms for some and the stories of our mold warriors are intriguing. It’s not hard to figure into the model I’ve proposed how biotoxins causing inflammation would activate virus and keep it activated while the exposure continues. My impression is that men are more likely to recover an adequate level of function and more likely to be able to exercise. My husband is an extreme mountain biker at almost 50, seven years after onset of cardiac symptoms and severe dysautonomia; he has thrived with the disease and he mostly refused treatment. Although PEM is probably pathognomonic, there are people who can exercise. I had a year of episodic neurological and vascular symptoms, followed by a full crash and period of disability, then near recovery, without treatment, for most of ten years during which I could exercise, but had symptoms. In addition to the common viral onset and immediate PEM which never goes away, histories like mine are not uncommon. A crash with a very slow recovery over a period of many years is a variation, and lots of others. My general impression is that the second generation is sicker. I have even heard from families with three generations of clinically apparent illness. There is lots and lots of subclinical disease in family members.

It is a relapsing, remitting illness. Whatever someone was taking (or prescribing) at the time the improvement happened is thought to be causative. Lately I’ve had particular difficulty with people who believe they know how to cure me with their favorite therapy. Some people who have recovered have a lot of ego about having gotten well and that makes it even more difficult for those who haven’t. IV hydrogen peroxide comes up a fair bit. Please folks, if you want to try some oxygen, use oxygen. If you want to try a higher dose of oxygen, try HBOT. Don’t let anyone inject peroxide into your veins. Or endanger you in other ways. There is no cure, though some people get better spontaneously. If anybody had the answer, so many people wouldn’t still be sick.

What do I think about Ampligen? I have no personal experience with it. From my mail and the impressions of friends in practice, like everything that has been tried over the years, there seem to be a very few successes, some modest results and some harm. It’s been around forever, so it’s hard for me to believe that it works that well, or we’d know by now. It’s IV, is needed indefinitely, so requires permanent access, and is financially out of reach for most. It’s making some doctors wealthy though. The patients are even paying for their own clinical trials.

IVIG has helped quite a few people, incompletely and the improvement doesn’t always last. It’s intravenous, you have to take it forever, it’s expensive and difficult to get covered. Also it’s a pooled blood product. 

Rituximab? It sounds really scary to me. To take or prescribe. The initial infusion can kill you. Complications include life threatening infections. From the drug monograph:

Serious adverse effects, sometimes fatal, have occurred in patients receiving rituximab. Severe or fatal infusion-related reactions; tumor lysis syndrome associated with fatal renal failure; severe or fatal mucocutaneous reactions; progressive multifocal leukoencephalopathy causing death; hepatitis B reactivation with fulminant hepatitis, hepatic failure, and death; other severe or fatal, bacterial, fungal, and viral infections; serious or life-threatening cardiac arrhythmias; severe or fatal renal toxicity; and fatal bowel obstruction and perforation have occurred in patients receiving rituximab.

Adverse effects, including serious adverse effects, commonly occur with rituximab therapy. In clinical studies of rituximab in patients with relapsed or refractory low-grade or follicular non-Hodgkin’s lymphoma (NHL), adverse effects were reported in 99% of patients, and grade 3 or 4 adverse effects were reported in 57% of patients. The most common adverse effects reported in 25% or more of patients in clinical studies are infusion-related reactions, fever, lymphopenia, chills, infection, and asthenia.

GcMAF? I’ve heard from a few people in Europe who are trying it and so far, the reports I’ve heard haven’t been exciting. Let’s hope it’s better than that. I haven’t heard any first, or even second hand, reports of dramatic response, but nothing negative either. Early days.

I’ve gotten a lot of mail about how awful Trine Tsouderos is, since last week’s Chicago Tribune article. Trine Tsouderos is not my enemy. We actually have a cordial relationship, having agreed to disagree about some things. I thought her chronic Lyme story was pretty good. I do not believe that she is part of a conspiracy. Nor, apparently, is she Paul Offit’s sister-in-law or connected to the CDC in some way. It’s all silliness. She is trying to do her job, which is to report the news. She has always dealt with me in a professional manner. I think it’s great that she’s keeping our plight in the public’s face. She is reporting that ME/CFS is a real disease, even if she thinks that XMRV is a contaminant or that the vaccination program is flawless. It’s a good thing that it’s news. She is raising awareness, even if we disagree on the details.

For the record, I am not “anti-vax”. I vaccinated my kids selectively (no Hep B or chicken pox), other shots a little late and not all at once. Seemed common sense at the time. It had nothing to do with being part of any kind of movement. My concern about vaccinations now is two fold. It seems obvious to me that vaccination injured people are over-represented in the ME/CFS patient group. And the hypothesis outlined in my last few posts explains too much of the mystery to be dismissed. I am completely comfortable urging caution until we know more. Not such a radical concept. We routinely withhold vaccines from other immune compromised people.

Here is the question that I submitted to the chat with Paul Offit hosted by Trine Tsouderos on the Chicago Tribune website a couple of days ago:

Are you concerned that the current epidemics of ME/CFS, ASD and GWI are related to vaccines? These neuroimmune disease cohorts are all of mysterious etiology and share many clinical similarities: sensory and cognitive processing deficits, susceptibility to and inability to clear certain infections, an unusual susceptibility to stress, increased  oxidative stress, glutathione depletion, methylation blocks, mitochondrial defects, high levels of heavy metals, inflammatory bowel issues, hormone abnormalities and a suspicion that vaccines are implicated in pathogenesis. The pathology in humans is extremely similar to what is known of simple retroviral infections in animals. We have evidence that xenotropic and polytropic MuLVs are infecting humans (Lombardi et al Science Oct 2009, Lo et al PNAS Sept 2010). Given the history of the use of mouse and chick embryo cells for vaccine production coinciding with the history of Epidemic Neuromyasthenia (as documented by Henderson and Shelokov, NEJM 1959), the known presence of animal retroviruses in those cells, and the documented ability of these viruses to infect human cells, aren’t you the least bit concerned?

His reply:

The xenotropic murine retrovirus story as a cause of neurologic disease, including chronic fatigue syndrome has clearly fallen apart. And for those of us old enough to remember, many careers have fallen off a cliff claiming retroviruses as a cause of a variety of illnesses: most noteworthy, MS and Kawasaki’s disease. Retroviruses are so ubiquitous and such a frequent lab contaminant that they’re the Sirens of the lab.

Completely non-responsive. How can he sleep at night?

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51 thoughts on “Random thoughts

  1. >Amazing.

    A clue hidden in plain sight.
    The best disguise imagineable:

    nobody wants to see it.

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