Since my last post, several people have written to say that I sounded discouraged. I don’t feel discouraged. I feel realistic. It’s too bad that it didn’t turn out to be a fairy tale, but I really didn’t expect it to. We are improved. Relief is relief. For now, I’m thrilled to have a finger in the dyke.
I didn’t report more specifically about responses to treatment other than ours, because the information available to me is spotty and some of it is hearsay. It is really only fair for me to talk about us. But since I did attempt to summarize very generally, I would like to add that when I said that some people on treatment aren’t better, length of time since starting is variable as is the choice of drugs. When I said people hadn’t tolerated the drugs, I was talking about very abortive attempts to get started. Also these people haven’t given up. False starts are to be expected under the circumstances. It was my intention to report only in the most general terms, in an attempt to give an impression of what it is like to get started. It’s ridiculous that we all have to try to figure it out this way. We need a real clinical study!
So I’m not discouraged. I’m angry. My disappointment in my colleagues is profound, with pathetically few exceptions. People write to me asking if they should go to this one or that one, try this protocol or that. To the doctors I say: It’s the virus stupid. You’re not going to stop a retrovirus with the wrong antivirals, ever more sophisticated combinations of antibiotics or any amount of supplements. I understand the reasons why it became this way, but I don’t understand any longer.
We’ve been given the answer and almost nobody is running with it. Why are these doctors still telling their patients that it’s better for them to adhere to the same old half-baked ideas that haven’t worked than try specific treatment for what they have? Better to keep their captive audience. If these drugs work, patients will be able to be treated through normal channels. They won’t have to travel and spend ridiculous amounts of money on uncovered treatments that are often worthless or dangerous. I’ve never seen a group of people so invested in their own ideas as the doctors caring for these patients. It’s like they’ve been in the dark so long, they can’t stand the light.
Why has mainstream medicine abandoned us? It’s because of doctor discomfort with not knowing what to do with a patient that doesn’t fit. Easier to blame the patient. Also the disease makes the patients “crazy”, but still smart enough to read, thus knowing more than the doctors. All worsened by the insurance companies practicing medicine, the loss of the doctor-patient relationship which is essential to the treatment of chronic illness and, of course, the government not doing its job to inform the doctors of what they should have known long ago.
To my colleagues: You are sleeping with the enemy. Here’s your chance to be a hero. There are still people out there who believe that HIV doesn’t cause AIDS. What are you planning to do? Wait for the government to tell you the obvious? Wait for the insurance companies to tell you it’s a good idea to treat? Some of us will be dead by then. Get a clue and help your patients!
>jamie:
Below my comment I have reposted my comment to your previous blog of a couple days ago, because I think it's pertinent for this blog also.
I agree with you, to me, you don't sound discouraged — you sound realistic. Here's an example of our clinicians today — I just went to highly recommended rheumatologist (his patients love him, he actually listens and portrays empathy to his patients). I was looking for a clinician who would want to tackle XMRV and be enthused. I told the rheumatologist that I was a month into a trial on low dose naltrexone. He replied that he would never try low dose naltrexone (LDN) on a patient until a peer-reviewed, double-blind study on LDN had been published in a respected journal, and probably not until that was followed up by a couple more studies! So when do you think this rheumatologist would actually start implementing a XMRV regime — how many decades from now??
It is time for clinicians to start using that their keen minds to start trying to lessen their patients misery. In the tens of tens of clinical visits I've had over the last 15 years, so few medical doctors have spent any time THINKING about my classic CFIDS/FMS symptoms.. all that comes off their lips is: Lyrica, Cymbalta, etc. I send them research papers before my visit, …. never has a clinician even skimmed these papers. In order to be efficient, I send them a written document that summarizes why I have the current appointments with them, and never do they read it before they open the door and come into the room….
Anyway, time to rattle some cages…..
/////////////////////////
previous comment from me (voner)
Keep on blogging!! you are "speaking the truth to power", and you have the expertise to rattle some cages in the retrovirial research & general clinician community.
I'd like to note that, that when you say, " It is turning into a quiet revolution of mostly old, sick ladies." Most likely this is because the sick old ladies have the money/cash flow to try retroviral's. I suspect there are hundreds of us out there if not thousands that would try retroviral's in a flash, if they were affordable to us. Just think — how many years do you think it's gonna be before Medicare OKs the use of retroviral's for CFIDS/ME, or fibromyalgia, not to speak of some of the other potential XMRV syndromes ….
Considering the lack of general progress on XMRV related clinical actions/information/etc. I think some civil disobedience is necessary.
August 1, 2010 5:56 PM
>this comment is in addition to the comment i just made to your previous post of a couple days ago, which is pertinent also…
Jamie:
I agree with you, to me, you don't sound discouraged — you sound realistic. You are direct and angry. Good for you.
Here's an example of our clinicians today — I just went to highly recommended rheumatologist (his patients love him, he actually listens and portrays empathy to his patients). I was looking for a clinician who would want to tackle XMRV and be enthused. I told the rheumatologist that I was a month into a trial on low dose naltrexone. He replied that he would never try low dose naltrexone (LDN) on a patient until a peer-reviewed, double-blind study on LDN had been published in a respected journal, and probably not until that was followed up by a couple more studies! So when do you think this rheumatologist would actually start implementing a XMRV regime — how many decades from now??
It is time for clinicians to start using that their keen minds to start trying to lessen their patients misery. In the tens of tens of clinical visits I've had over the last 15 years, so few medical doctors have spent any time THINKING about my classic CFIDS/FMS symptoms.. all that comes off their lips is: Lyrica, Cymbalta, etc. I send them research papers before my visit, …. never has a clinician even skimmed these papers. In order to be efficient, I send them a written document that summarizes why I have the current appointments with them, and never do they read it before they open the door and come into the room….
Anyway, time to rattle some cages…..
>Anyone else notice that the CDC will usually sit on a disease until a patented drug is available to treat it?
>The last time the CDC changed their stance on CFS was penecontemporaneous with evidence that Ampligen improved symptoms.
>Voner….azt is cheap and raltegravir is available for free from merck if you are eligible. tenofovir might be available through a patient assistance program too.
-S
>Dr. Jamie,
Telling it like it is… I love you for that! I pray the sheeple doctors that have followed the CDC and big Pharma dogma decide to use their brains and follow your advice. Until they do, we continue to be sentenced to living in hell, or dieing; or both.
>Have you considered using Humic acid with your anti-retrovirals?. It has proved effective against HIV and coxsackie, HSV-1 and HSV-2 viruses as well as increasing NK cells by rebalancing the immune system towards TH1.
http://www.humichealth.info/
>Dr. Deckoff-Jones,
Thank you so much for your candor with this statement: "It's the virus stupid." Your willingness to go out on a limb is a welcome change from alleged advocates like Cort Johnson, who has argued publicly that pathogens are not important to ME/CFS.
I wish you and your daughter continued success with this treatment!
>I wish you and your daughter well and I hope that you continue to find improvement anyway that you can. I am xmrv positive with a long history of major illness from it. I have not tried prescription antivirals – only supplements and herbals that are antiviral and I have had A LOT of success with them. I am also doing far infrared saunas and other alternative methods to help tackle the virus. I would not give up on the alternative side of things. I am not relying on one method and I am not waiting for the CDC or an MD to give me validation. I have no time to waste either. xmrv is a very wicked thing and I've noticed I need to be very vigilant with driving it down. I am truly amazed though how much knowing I'm xmrv positive has helped me already. Wishing everyone well who has this horrible thing.
>Dr Jamie,
do you or anyone know if raltegravir is available on patient assistance outside the US (e.g. in the UK)? From what I can see it isn't. If anyone could clarify I would be very grateful.
Desperately seeking treatment.
>I'm glad you're somewhat better but I totally understand where the doctors are coming from. These are strong drugs, and even compliance among those with HIV is not universal, a signfificant portion can't tolerate and go off even though HIV often progresses to death. Since the science is still muddy, studies are contradictory, the causal proof is not yet there and will not be for a good amount of time, and it is certainly not standard of care, most doctors are not willing to apply three serious drugs to a retrovirus about which there is no consensus yet. It takes time for science and medicine to come to consensus. And sometimes when that consensus is early it's wrong and harmful. Drugs like vioxx were embraced too early and killed and damaged many. A panel is now urging the FDA to withdraw Avastin, the world's best selling cancer drug, for treating breast cancer as apparently it's ineffective for that form of cancer. There is a lot of uncertainty where drugs are concerned and the dictum of the medical profession is first do no harm.
I can understand your being angry at doctors for overtreating with antibiotics, and unfortunately I've said for 10 years that this polarized the debate, so that useful long-term treatment with antibiotics was pilloried. When I first got lyme, in the summer of 2000, I went to an infectious disease expert who treated with me with 2-3 weeks of doxycycline 100 mg bid. Standard inadequate treatment, but he told me had had seen a patient who'd been on IV rocephin for seven years by an LLMD and had to have surgery for a fungal ball in her sinuses. One patient like that can push a doctor back into a corner where his mind is forever closed, where the common options for patients are inadequate treatment or overtreatment.
OTOH most doctors go by the dictum, "I may be wrong but I'm never in doubt." Patients need to be firm, friendly, but persistent in helping guide their own care based on their own improvement or lack thereof. A patient who keeps taking medicines while remaining sick or sicker, is not taking good care of themselves. It's up to them to go to another doctor.
The whole situation is unpleasant if not terrible because morbidity and mortality, two inevitable facts of life, are tragic when you experience them personally. They come in whatever form they come. Doctors can't fix the fact that we have bodies that age, get sick, and die. Some sooner, some later. There are guidelines for practicing medicine within specialties. Hopefully the science will continue to evolve and it will be clear if and in how many XMRV is a primary cause of CFS/ME. It's not clear now.
>You are…. , well wanted to write a hero, but that's not the right word, maybe inspiring is the right one. I think you show real guts.
Your brain seems to work better than the one's who claim to be healthy and sane.
You just make sense !
I get courage reading you blog, not because the Retro viral's work or don't, no, I get courage because your just doing the right thing in the face of so much stupidity! That takes courage !
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>dear jamie, i am getting sicker and sicker. i know you are right to try something , instead of waiting. time will run out, like it is for me. today, i found your blog for the first time so some good things still happening. i shall continue to follow your journey. best wishes, 5150
>Hi Jamie, I read the article in the Wall Street Journal. I find it very interesting and intend to read more of your blog. I do have a question for you… You refer to ME/CFS. I would like to know if the diagnosis of Fibromyalgia is the same as what you call ME? I have been diagnosed with Fibromyalgia and am taking Lyrica. Thank you !! Carol