There’s been a shift in the quality of some of my mail. I am becoming very concerned about being misinterpreted. When I write, I assume that people have read what I’ve written before, but increasingly, that is not always the case. I’ve been writing for eleven months and have covered a good deal of ground. It is becoming clear that if I keep writing, I will have found a way to piss off almost everyone.
When I suggested that antiretrovirals may be useful to prevent transmission, activation or progression of the disease, I meant in the future. Please do not forget that treatment during pregnancy is very effective for preventing HIV from infecting the next generation. Likewise post-exposure prophyllaxis works for HIV. However I was NOT suggesting that prophyllactic use of antiretrovirals is reasonable for XMRV positive people at this time.
I am in favor of treatment. Repeat, I am in favor of treatment. I am against overly aggressive treatment that harms, e.g. indiscriminate prescribing of antibiotics a la ILADS guidelines. I do have the impression that folks who have avoided or not trusted doctors are generally better off, but there are treatments worth considering. I can’t forget that I was functioning as a doctor, and treatment brought me down completely, for six years; I started to improve when I stopped everything except my blood pressure medicine. Ali got four good years from antibiotics, but then was sick for three despite them. A word to the wise. Don’t beat a dead horse. We need to learn from the mistakes of the past.
Here are the current treatment options for consideration, as I see them:
- Antiretovirals: Viread, Isentress, AZT
- Antivirals for activated viruses EBV, CMV, HHV-6 and 7, genital herpes, shingles: Valtrex, Valcyte, Acyclovir, etc.
- Antibiotics for Lyme Disease and other tick-borne diseases: orals, judicious use of IVs, treatment for Babesia
- Anti-inflammatory drugs and supplements for NFkB inhibition (avoiding synthetic steroids when possible): Actos, aspirin, Celebrex, Meriva SR
- Treatment for dysautonomia, POTS, OI: oral hydration, electrolytes, IV saline, Florinef, beta blockers (including Bystolic), midodrine, sublingual Zofran
- Treatment for methylation blocks and glutathione depletion: Deplin, other folic acid derivatives, B12, parenteral glutathione, Meyer’s cocktail, NAC, undenatured whey protein
- Supplements supported by the HIV literature (a work in progress)
- Bioidentical hormone balancing and replacement
- Vitamin D supplementation
- Nootropics: selegilene, piracetam, vinpocetine, others
- A few relatively harmless things that may be useful for some: Nexavir, LDN, Flexeril, isoprinosine
- Eliminating stressors
- Mind body therapies, especially biofeedback: EEG, heart rate variability and peripheral training
- Dietary change: Specific Carbohydrate Diet, personally tailored elimination diets, probiotics
- Detox and avoidance strategies, especially for MCS, toxic mold exposure, and specific dietary triggers, gluten, cassein, nightshades, sugar
- Herbal treatments: hawthorne, stinging nettle, samento, ginseng, valerian, gingko, milk thistle, rhodiola, others
- Medical marijuana (caution: can exacerbate POTS due to hypotensive effect)
- Symptom based treatments: pain medicine, anti-anxiety medicine, anti-depressants, sleep medication, psychostimulants, etc, etc, etc.
I won’t use the dreaded acronyms CBT and GET, but taking the politics out of it, very careful resistance exercise is important. If aerobic exercise is tolerated without PEM, it keeps the disease at bay (patient reports). It is possible to exercise even supine. And, though my own experience with psychiatrists has been dismal due to disbelief and misunderstanding, a good therapist can be a godsend.
Personally, I’m not interested in Rituxan, Vistide, Mitomycin C, or stem cells out of the country. Even stem cell proponents are now saying that repeated infusions are necessary. It seems to me that if placental stem cells are used, without control of the underlying retroviral infection, they will become infected, and if autologous cells are used, they are already infected. Also how are the donors screened, given that blood products are particularly unappealing at the moment? I have heard from a number of people who have pursued this with no impact on their illness.
The reactions to Ali’s post were all over the place. Please know, she is not without medical advice;). She is an extremely informed patient, familiar with conventional and alternative options. For now, she is trying dietary interventions, mind-body therapies, occasional alprazolam for rescue, and tincture of time. She tried atenolol, which helped the tachycardia, but made pretty much everything else worse. Ali is sharing her experiences, because of the philosophical questions raised, and to reach out, not because she is looking for a new treatment, though the concern expressed is of course appreciated. The symptoms she described, very common in CFS, GWI and ASD, represent the interface between the psychological and the physiological.
There’s a difference between sharing what has worked and telling someone else to “take the cure”. In the last couple of months, I’ve received so many protocol suggestions that there isn’t enough time left in this life to try them all, though quite a few probably have merit – at least seemed to work for someone. These suggestions underscore the many observations over the years that the best approach is to alter the internal and external environments in your favor whenever possible. With luck, you may hit something that makes enough of a difference to really impact the disease process. Treatments directed at reducing inflammation are useful. Strategies for silencing provirus need to be considered, now that we know what we’re thinking about. And an approach that makes us feel hopeful and peaceful is more likely to have a positive outcome, because the disease is so stress related. The fact that the illness is exacerbated by stress is the reason why the assumption was made that it is a somatoform disorder. The connection with stress was always obvious to me. It was the thing that made me think my doctors and colleagues were right about me in the beginning, since what happened was so different from what I was taught to expect getting sick might be like.
There is a divisiveness, an ugliness, that has developed within the patient community, and it comes out in some of the reactions when people disagree. There is often an angry edge expressing even mildly dissenting opinions. It’s defensive and a reaction to past disputes and slights. Ali mentioned the new young adult people’s forum and I read very negative, gossipy things about its creator. That young man is using all of his limited energy to provide a much needed forum for very isolated young people to come together. Why would anyone attack him? Many of the recent comments sound like people don’t feel heard and aren’t hearing each other. Due to variable response, different factions have developed. Accept that whether something did or didn’t work for you may have little predictive value for others. We should be coming together as a patient group and listening to each other, not fighting. Often past experiences of being doubted or judged color the reaction to current developments. We have all made mistakes. Let’s let it go.
I can’t believe the heat around my being “too easy” on Tsouderos. Even my last post was thought to be a sell out. I’ve received more negative mail about her than anything else I’ve written. I wasn’t around for her autism/vaccine articles, but there was once a photoshopped picture posted on the Age of Autism of her and others eating a baby for dinner. What’s that about? You may think she’s a bad reporter, or even a bad person, but she’s not exactly a baby murderer. It’s all too emotional. When you scream at people, it’s hard for them to hear you. It hurts the cause. There is a sense of entitlement that comes across and makes us an unsympathetic patient group. Everyone being healthy isn’t an inviolable right. People suffer worse every day all over the world. I imagine starvation is worse. Or being tortured. I treated a Cambodian woman in the ER once whose eleven children had been shot in front of her by the Khmer Rouge. When I think “why me?”, I remember her. There’s something wrong with this modern expectation that we’ll all be taken care of. The world is a really messed up place. Life isn’t neat. We don’t all get to be comfortable. It is a peculiarly modern phenomenon, this disease where so many people get sick and don’t die, living their lives with all modern comforts, but unable to get comfortable, no matter the luxuries.
>…and a more than a little anarchy seems an appropriate response as well…
As I'm sure is the case with the vast majority of people reading your blog, I check back often, and really look forward to your informative, open, honest posts.
It seems that in person we're more apt to be aware that it's another human being to whom we're addressing our comments; whereas we tend to forget our manners on the Net. Also, written words have the ability to sting more. They're indelible and we can't see the body language or hear the voice inflections of the authors.
Perhaps some of your audience forgets how sick and tired you are; that you're suffering along with us; and that writing on both sides can seem more curt than intended (although I've never seen an unjustified curtness in your posts)because just about everyone involved in this blog feels crummy day in and day out.
I'm worried that you'll become discouraged and stop writing about your experiences.
Please keep your posts coming.
Thanks for all you do.
>Oh, I so agree with you about the divisiveness, the sense of entitlement and the unsympathetic patient group.
When I first sought information about ME, I was utterly amazed at the level of knowledge, self-education and communication among people with this awful illness, and I was so full of respect – especially knowing the energy cost of acquiring this knowledge, and the often impenetrable language much of it was written in. I still feel that respect.
But I've also been really horrified at what in the physical (rather than online) world would clearly be bullying of anyone with dissenting views; or the tone of interrogation aimed at individuals whose actions are disapproved of by other individuals; or the scapegoating of people who simply have made an error or who are misinformed. For the first time in my life I experienced the farcical act of a stranger contacting my private inbox to ask me to change what I had written on a public forum (what delusions is this poor person under?).
Exchanges that should be discussions quickly become self-righteous and accusatory. It's only through discussions that we can amass and pool our knowledge, and learn – being hectored alienates. Getting shirty with those who want to help us is just self-defeating; they do not have to help us, they are making a choice and can unchoose it. People – you are not an activist if you are damaging and bullying others with ME.
How people with ME are treated by the most powerful organisations in society (medical, government, research, insurance, legal etc etc) is utterly criminal – none of us deserve such appalling treatment and neglect, especially on top of feeling so ill. But that's still no reason for making others who feel so ill feel terrible – whatever your point is, it isn't worth that.
So Jamie, I'm really glad you've said what you've said – it needed to be said. You are gutsy and honest and I really appreciate that.
Could you do a post for "test to be done for CFS patients"? I find this post on "treatments" very interesting, and I think you are in a position to make a list of "biomarkers" or "proxys" for CFS diagnostic or abnormalities to be found, such as RNASe-L, PKR, elastase, XMRV, Free circulating DNA, Magnesium, ATP, etc… whatever is material and meaningful for CFS patients to fight for a "disability" or a "sick leave" so they can demonstrate that "something is not right" with their health…. If you could do that would be grate…
Hugs from Spain
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>I appreciate that this takes a lot of energy on your part and is voluntary. Thank you for your kindness in trying to help others. Most are aware that you are putting the info out there hoping it will help others make their choices and that this illness is something noone has yet been able to figure out.