I’m feeling like a lightening rod, but I guess I asked for it. I thought about making people sign in and tell us who they are, but that would keep some people away whose thoughts we would like to hear, so I’m going to leave it alone. Dissenting opinions are welcome, and no need to be apologetic, but I ask that everyone be civil and I do encourage leaving real names. You know who I am; I’d like to know who you are. Please don’t take your frustrations out on me. I don’t want to moderate, and I want everyone to have a chance to have their say, in a considered way. The few who have needed to lash out have been more than offset by the statements of personal triumph by people finding meaning in their lives despite the losses and injustices they have suffered.
The list of treatment options that I posted a few days ago is a work in progress and I hope it will be viewed as such. One of my concerns is that things will be lifted from the blog as my prescription for everybody. The downside of this blog for me is that I may get quoted incorrectly. Also my opinion may change. So I ask everyone to respect that I am sharing my thoughts openly in real time, and not put the list out there as Dr. Deckoff-Jones’ treatment protocol, written in stone and never to be changed. It’s for discussion. I have added a few things to it since I posted, from your suggestions. Keep it coming.
Like everything I write, I am putting it out there in the hope that it helps someone. I AM NOT TELLING ANYONE WHAT TO DO. I am sharing my ideas. There may be inconsistencies that I’m working on. Please contribute your experiences. If you disagree with something, don’t attack me or be defensive yourself. Just tell us why you disagree. Maybe we can figure out how to have the discussion without people becoming hot and bothered. But if not, we’ll forge ahead anyway.
Lots of questions about Ampligen. I don’t know very much about Ampligen. My bias in all this is to believe the patients, because that’s where the best information comes from. Just about everyone else has a dog in the fight. The things I have heard about Ampligen are mostly negative, or positive and then negative, but it’s a small number. There are very few advocates for it after more than 20 years. Hemispherx reports that 900 people have been treated with 90,000 doses to date. The available evidence with respect to XMRV is mixed. From Dr. Lapp’s newsletter of March 2011:
Dr. David Strayer, Medical Director at Hemipsherx Biopharma, described a retrospective study… 208 subjects from a previous double blind placebo controlled Ampligen study were analyzed for XMRV. About one third were positive for the virus and two-thirds were not. Activity monitoring demonstrated less activity in XMRV+ subjects. That is, they were less active and presumably more ill. Specifically, the improvement in exercise ability was monitored in these subjects. More improvement was measured inXMRV+ subjects than in XMRV-subjects. The table below describes the percentage of subjects who obtained at least 25% improvement in treadmill exercise duration at week 40 of treatment, as related to XMRV serology:
Dr. Strayer concluded that there was a 70% greater than average exercise response in XMRV+ subjects, and a 40% lower response in those who were XMRV-. Medication use was monitored in all of these subjects as well. 53% of XMRV+ subjects were able to reduce their use of symptomatic medications, while only 32% of XMRV- subjects were able to reduce medication use.
These aren’t exactly stellar results given all the wear and tear, unless of course you are one of the lucky ones. Dr. Mikovits reported in her Santa Rosa talk that about a third of the patients she has looked at had evidence of viral activation when treated with Ampligen (unpublished). So her observation, in addition to the less than exciting anecdotal evidence, gives me serious pause, but apparently a multi-site study is forthcoming, so we will have more information to consider. At least someone is studying something with respect to treatment, though it is the first clinical trial I have ever heard of where the patients are paying for the drug. While waiting for the results, I guess it is up for consideration, so I added it to the list with a question mark, but it’s a big question mark. Personally, I am not interested at this time.
The most interesting thing I’ve heard about recently is Dr. Urnovitz’s new rapid deep sequencer. From the press releases linked here for the Chronix/Hemispherx joint patent application announcement for a CFS blood test:
The Chronix experimental approach analyzes fragments of DNA often released into the bloodstream during the process of apoptosis or programmed cell death. Chronix is using its proprietary technology and advanced DNA sequencing platforms to measure alterations in specific regions of the chromosome, which can be detected as distinctive “signatures” in cell-free blood-borne DNA. By focusing on these signatures, Chronix’s technology can detect the presence of disease-damaged cells in simple blood samples without needing to biopsy diseased cells or tissues.
“Our technology—based on DNA released into the bloodstream by dying and damaged cells—taps into the dynamic information provided by the genomic alterations unique to each diseased cell. We capture what is happening to the DNA very early in and throughout the disease process, in real time, and patient by patient. That’s how our approach differs from other tests that focus on static genomic data or protein biomarkers,” said Dr. Urnovitz. The patient-unique signatures captured by the Chronix technology may prove useful as a companion diagnostic – a test that is used to help guide treatment decisions – and to provide information about the disease process to help pharmaceutical companies select the most efficacious drug candidates.
The Chronix approach has been validated in a number of peer-reviewed settings. At the ASCO meeting in June, Chronix researchers presented data showing that its assay detected breast cancer and invasive prostate cancer with 92% sensitivity and 100% specificity. Additional published studies have demonstrated that the Chronix technology can identify the presence or absence of active disease in multiple sclerosis patients, and that it can accurately detect early stage breast cancer with high diagnostic sensitivity and specificity.
A number of people have asked me what supplements I take. I have swallowing and appetite problems. If I take all the things I would like to, it’s a small meal that doesn’t go down well. When I take supplements, I take Meriva SR, B12 (in addition to Deplin), NAC, glutamine, L carnitine, CoQ 10, Vitamin C and undenatured whey protein. I also take Hawthorne tincture sometimes. I have never noticed a difference from a supplement, except transient effects from high doses of single amino acids. I have responded to herbs at times, especially teas. I miss Deplin if I stop it. There are other supplements that make sense with respect to what is known about how supplements impact HIV. I’ll discuss those ideas more in the future.
The active form of Vitamin D, D3, is a hormone with effects all over the body, including regulation of the immune system. Vitamin D ligands enhance NK cell and macrophage function. Supplementation for inadequate levels is very important. I left it off my list initially and one penpal reminded me that Vitamin D3 supplementation is the only thing that ever helped her noticeably. Levels should be followed. The literature is vast. Here, for the flavor, are a few abstracts from the last couple of months.
Vitamin d as a T-cell modulator in multiple sclerosis. Smolders
Vitamin d and inflammatory bowel disease. Ardizzone
Vitamin d deficiency and connective tissue disease. Zold
Vitamin d and innate and adaptive immunity. Hewison
Antibacterial effects of vitamin D. Hewison
Antibiotics again. I am in support of using antibiotics if they work. I think the ILADS guidelines are dangerous with respect to their recommending long term intravenous drugs in combinations for years, even if it’s not clear they’re working. I did it. It didn’t work. It hasn’t worked for many people. It appears to work for a few people, like anything. There is no way to know if those people got better because of their treatment or despite it, because some people get better slowly anyway without treatment. Putting it all together, some people need a long term oral antibiotic to maintain a level of poor health, maybe because Borrelia burgdorferi is being suppressed, or maybe not, but it’s obvious that those people should continue their antibiotic. It is also rational, if you think Bb is the problem and it’s been there for a long time untreated or the patient is immunocompromised to try and clean them up with IV antibiotics. If they respond partially, you might want to continue for a while, duration to be determined within the confines of the doctor patient relationship. If a patient responds to IVs they should be offered orals after. Babesia, if present, should be treated in a symptomatic or deteriorating patient, but treatment doesn’t always get rid of it.
I am aware of the apparent inconsistency, mentioned by several people, that I am “for” antiretrovirals and “against” antibiotics. I hope that what I’ve written above clears up part of it. I listed anitretrovirals, not because I think everyone should take them, but because I think they should be considered, like everything else on the list. The option should not be buried because it’s not a cure. There is no cure. The list is in no particular order. I suppose I listed antiretrovirals first, because it’s the thing on the list that is hardest to access, but should be up for discussion, in my opinion. When I started taking them, I expected there would be a viral load measure available by now, and there isn’t. That makes it a tough call with respect to where to go from here, needing to make a decision in the dark. I can say without qualification that for me, antiretrovirals are much easier to take than antibiotics, but it is not an either or.
The responses I get from the Lyme community are sometimes irrational. They feel I am attacking the only help they have, their LLMDs. But I am attacking the extremely faulty guidelines that ILADS continues to put out there to influence unsuspecting physicians. I know quite a few doctors who treat Lyme and are most definitely “Lyme literate” that don’t belong to ILADS, or did and have quit. They resent that they are being painted with the same brush. If you have a good Lyme doctor, I hope he or she will consider my ideas. I am most certainly not attacking any doctor who wants to figure out how to help patients. ILADS was a good try. I was a member for six years. Time to move on. My opinion. Everybody gets to do what they want.
As for privilege. I grew up with advantages. My husband grew up poor. We’ve had money and not had money. It’s better to have money, but money and privilege are in no way protection from the disease. The real privilege I have, is the privilege of perspective, and that perspective is growing from your contributions.
I am all for angry advocacy, as I’ve said. I think we should do something dramatic, like camp out in front of the CDC this summer and throw fake blood on the steps in a proper demonstration, demanding big time funding for a change. CFS, ASD, GWI all together. A lot of people. In the Lyme community anger problems are called “Lyme Rage”. Like anxiety and depression, anger problems are common in neurodegenerative diseases, but blind striking out works against us. It turns off people that we need, reasonable people with normal lives who would like to help. We want what people with other diseases get, compassion, so we can stop saying we’d rather have cancer or AIDS. We are in need of help. When asking for help, one should remember the costs and rewards to the helper. The feeling of compassion for another is it’s own reward, but it’s hard to be compassionate when under attack, too busy turning the other cheek or striking back.
This discussion of who suffers the worst seems to me to be at the heart of the problem at hand. How do you come to terms with the anger and loss, while maintaining or growing compassion for others? There is a small subset of CFS patients that are unbelievably sick and stay that way for a very long time. A living hell. A contender for one of the worst things that can happen to someone. Yet, even they sometimes have some spontaneous recovery. In that way, we are lucky. And it’s important for those that are not so sick to know that this is not where the disease always goes. It doesn’t usually get so severe and there are ways to move it in your favor. We don’t know why some people get so sick and others don’t. But getting sick isn’t a given, nor is progression. Though there are clearly stages to the disease, there may be ways to slow progression.
There was a very sad comment by a woman who said she hadn’t been touched since her doctor shook her hand in January. Touch is a basic human need. I often think there needs to be communal living with assistance for CFS patients. To the woman who wrote that comment. I know many of us wish we could hug you. The energy I get from friends in the ether helps me. Not the same as a hug, but something.
It is important to know who you are mad at. It’s not us against the world. We won’t get anywhere that way. We need to differentiate between our friends, the misguided who should be forgiven and a few evil people who don’t deserve our forgiveness. We will grow if we can have compassion for others who suffer too. Nelson Mandela spent 27 years in prison, came out and worked with his jailers. He helped his countrymen much more by working for reconciliation than if he had needed to spit on his captors.
Does anyone remember the old movie “On The Beach”? Gregory Peck, Ava Gardner, Fred Astaire? For some reason, it’s been in my thoughts recently, maybe because of the nuclear disaster in Japan. The world is ending after a nuclear holocaust and a few people in Australia are still alive, waiting for the fallout to come, gathering together in a park. Waltzing Matilda is playing in the background. The Salvation Army has hung up a giant banner that says, “There Is Still Time Brother.”