Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 22, 2010.
You can view the page at http://www.forums.aboutmecfs.org/content.php?211-Dr.-Peterson-Update
Hunter-Hopkins Center posted a link on their facebook page a few months back about Hemispherx licensing(?) Ampligen in South America, therefore bypassing the FDA approval process in that part of the world. I don't remember the details though.
joey, this is so very helpful! here are a few follow up questions if you are up for them.
- of the 10 folks peterson knows who are on ARVs, were they all xmrv+? and how long have they been on ARVs? Less than 5 months? (Dr. Jamie's blog of this wkend says she has been on hers 5 months and is doing very well.)
- peterson says patients like you (patients with yr type of lab results) are perfect for ampligen. can we get details? what makes a person perfect for ampligen?
- what were or are you NK cells numbers? i want to know what "in the dumps" is for NK cells.
- if you are up for a public discussion about "eeeeww" things: what does the water enema do for you? i know about coffee enemas, but water ones? does it just clear you out, or do something more?
lastly, a comment: the me/cfs forums online are full of risk-taking patients of all genders and ages (e.g. daffodil, dr. jamie, slaydragon and so many more). so peterson's comment about young men being The Risk-takers seems, well, antiquated and stereotyped. this is not to say that we don't appreciate your young male-yness risk-taking! i just wanted to happily point out that, thankfully, risk-takers come in many forms.
thank you again for this very helpful look at what peterson is thinking. and thank you for continuing to take risks for yourself and all of us.
let's start a chant: GIVE US ALL AMPLIGEN, NOW!
Thank you so much, m0joey. Very interesting.
I was on interferon for nearly 8 months for Hep C. It was brutal. I started feeling better for awhile after I went off it. My doc suggested I stay on it at the time, but I wanted nothing more to do with it then. Hmmm . . .
He is Andrea Whittemore's doctor - which suggests that she is taking something else - since no one he knows has really improved on them.
I think his point on how long it took to figure out how to treat HIV is important. It would be crazy, I think, to think that the first couple of drugs that were tried worked.
Does he have doubts about being able to produce an antibody test? It kind of sounds like he does????
Hang in there Joey! Good luck!
Good article Joey, It puts some perspective on ARVs. I would hold my money on GcMaf. It is a very promising drug that could help a lot of people to a normal life. Not a cure, but a drug that gives you your life back without a lot of suffering.
can someone explain to us what GcMaf is,
The important thing about GcMaf is that different genotypes seems to benefit more than others, so it's not a one-size-fits-all drug. And if it's not a cure and can lead people to a normal life, doesn't that sound a lot like Ampligen? They're both immune modulators, except one targets interferon and one induces macrophage activity. We'll see which one works better in time.
"I knew Incline Village had the flair for the dramatic but I could never have predicted this. I had much to discuss with my family. Condensed version: we decided the 40% discount with the group discount on Panama stem cells was not worth the risk of XMRV replication. Ampligen would be worth considering as a bridge to whatever ends up being an effective treatment for XMRV. Will wait for more data before considering ARVs".
Lol, I like having a doctor with a flair for the dramatic...It has been a lifesaver....besides, I have always detested mediocrity.
Personally I feel you are making a wise decision on the Stem cell treatment. There should be other opportunities to participate in group discounts if the treatment pans out. Yes, Interferon Alpha can make PWC's feel somewhat better for while (anti-viral), but not only does it have brutal side effects, but also has not been shown to have lasting long term benefit (for ME/CFS). Dr P has brought up Ampligen with me too....maybe my next step. Problem for me would be the cost.
I have continued to defer my follow up with Dr P pending availability of the Serology text. That's the next step in this process for me. Your blog is very helpful in measuring my decision to return even sooner. Thanks Joey
Thanks for the insights mOjoey.
I think if any lesssons about the patient/doctor relationship have become particularly apparent over the past 25 years (with regard to any illness, but particularly with ME/CFS) it is this - listen to the patients and then, just for good measure listen again. And don't just listen in the first consultation - keep listening, especially when you are running clinical trials.
All too often with this illness, as we know, clinical markers may show one thing and the patient reports the complete opposite, (especially during those first few visits to the doctor's office with ME/CFS when the patient is seriously ill, but all tests come back negative). But if the patient is consistently reporting symptoms, then obviously more work needs to be done, more investigation, until answers are forthcoming.
Who could be more important in this relationship than the patient, around whom the entire medical system purports to be constructed (in theory)? Diagnostic tests are supposd to be merely tools which aid the physician in addition to his/her clinical experience, in coming to a reasonable diagnosis, and once treatment is underway, in monitoring progress.
But there is absolutely no point in asking the patient how they feel and then ignoring the answer whenever it appears to deviate from the one expected, or because it contradicts some dearly held theory and especially so if we are in completely new territory here, as we are, where, let's face it, the patients are actually the only ones that have the full experience of an illness and suffer at first hand the fall out of an inappropriate drug regime.
I am therefore particularly concerned to read that even Dr Peterson (hero of our times) appears to be dismissing the experience of some of his patients. To quote from the article above:
"He said the upshot about the other 30% is that no one gets worse and refutes reports from patients saying they got worse because the clinical markers don't reflect that. I have no way to know if hes 100% right, but I think people may definitely feel worse from the inflammation. I thought maybe some felt worse because they could no longer tolerate the drug (i.e. Andrea Whittemore at one point), but he said it takes on the scale of 10 years for that to happen."
1. If the clinical markers don't match the patients' experience of deterioration on a particular treatment then I would suggest that the physician is missing something - perhaps a vital element of the disease process which could benefit from investigation.
2. The 10 years figure is presumably gleaned from drug treatments in HIV/AIDS and may not translate neatly to effects of the same treatments in ME/CFS (for a start its a different retrovirus which effects the body entirely differently).
3. If patients report deterioration and the doctor does not listen and react accordingly, then we may be missing a VITAL clue to the disease process which may benefit from further investigation and open up whole new channels of treatments and understanding.
For goodness sake doctors - listen to your patients and don't contradict them. They are probably right.
I think the winkle in determining the drug's efficacy is that neither the patient nor the doctor can ever be 100% sure if feeling worse means you're actually getting worse, especially in a disease with as much immune dysfunction and sensitivities as CFS. IRIS, herxheimer reactions, and upregulated inflammation have all been proposed as getting better/feeling worse dichotomies. I think Dr. Peterson isn't saying that when patients report feeling worse they're lying or even that he "dismiss(es) their experiences", but rather that he puts more weight in immune markers reverting from abnormal to normal than self-reports. Granted there are many clinical markers he has yet to use, but as it stands he does the most exhaustive diagnostic workups I've ever done or heard of, and with 20+ years of ampligen, I'd venture to say he knows something we don't.
Ultimately as a practicing physician, even with one with as much ME/CFS experience as he has, you have to make difficult choices for those patients that are on the cusp and I'm sure he'll be the last one to say he has all the answers.
Thank you Joey for posting this.
I found this invaluable.. esp. the part where he talks about the dangers of having little NK cell function.
For those of us who are essentially winging it w/out the guidance of a CFS-literate physician, it's extremely helpful to get an insight into Peterson's thinking.
Question (For any Peterson patients) Does he recommend getting the serology or the culture VIPdx test for XMRV or HGRV or whatever it's called?
One or both?
I'm not sure which he would recommend between the two, but he had me do both.
Just a quick thought on this. I've been on anti-virals for 10 months. Over the first five months there was steady improvement and then a dramatic backslide. I thought the anti-virals were losing their effectiveness. Dr. Montoya recognized that i was experiencing side effects from too much. My dose was reduced and I started to feel as though I was getting some of my gains back. We then upped my dose just a bit. Again, more improvement but I'm now on half of what was once my maximum dose (which is also less than half the dose prescribed for otherwise healthy patients needing a short to medium term course of anti-virals).
The assistance of an experienced doc is a godsend. My PCP has said that he would have never thought of side effects at my already conservative does levels.
Thanks for your reply mOjoey -
I did want to add at the end of my first post that I do realise that out of all the practitioners in the world, literally, Dr Peterson has clearly been one of the very few physicians that listened to patients when it really mattered and when almost all others had walked away - as we know from the Incline Village reports - and that he is one in a million. But the edit button option seemed to have disappeared when I went to alter the text!
I guess that today is a day of high tension and we are all sitting around for hours awaiting this Alter/Lo PNAS article embargo break later today and wondering how our doctors, politicians, family, neighbours, the media etc are going to respond, plus, rather dramatically and appropriately, its raining really heavily here in my corner of the UK as the tension mounts! - and suddenly all the injustices of the past decades leapt up and the world went 'dark'!
I am full of hope for the long term really - especially because of one in a million doctors like Dr P. and all at the WPI.
Thank you for your blog.
He ordered the Serology test on you? VIP told me (last week) the test is not ready yet nor do they even have a name for it to be used by the ordering physician. I have to re-do my draw (from May) because of this issue.
I wonder what's the longest anyone has been on Ampligen and how it affected them?
Joey, fwiw, if I thought I had a significant viral component and classic ME/CFS, I'd take Ampligen. I have heard lots of good things about it. The only real problem is the dang drug is so expensive. Peterson has been doing this for a long time now and if he says your markers are perfect, it seems like a really good idea. His point about stem cells is interesting tho I don't know if it's true. Do uninfected stem cells cause a retrovirus to go into high gear? But in any case, Ampligen sounds like a good idea!!
Yeah he did, but probably because he knew it'd be available soon (like today). I've heard that for culture-negative patients, they're not even requesting a redraw and will try to find it in the old samples if they're viable. You may want to contact VIP anyway to see if they can use your old sample
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