Discussion in 'General Treatment' started by deb obrien, Aug 13, 2009.
a belated thanks for this, chris!
The date of the e-mail is:
I will respond to your other questions as soon as I know the answer.
My source tells me that Cheney will be attempting to do some kind of quantitative testing of XMRV viral load comparing pre-stem cell and post-stem cell. This is one of the reasons I suspected he would not be publishing stem cell results this summer. This should be interesting.
As for the research being done by GMA, I've seen the list of tests required. I think they are doing us an amazing favor by going out of their way to conduct research, but I have to voice my strong opinion that the selection of tests isn't sufficiently geared toward CFS. I know they see a lot of CFS patients at that clinic and are in communication with Dr. Cheney so I think it'd be a great idea for them to collaborate with Cheney and ask what an appropriate panel for CFS patients would consist of.
My personal opinion is that it should at least recommend for XMRV testing and NK cell panel.
did you tell the research director just that??
i'm not sure it's in my place to tell the research director what to look for, but perhaps David and/or Ann can relay that message over?
on yahoo group, someone posted her positive experience with stem cells:
"That's a big assumption. I appreciate you answering though. I couldn't imagine how safe stem cell sources could increase XMRV. Still can't.
I've had 4 placenta stem cell treatments during the last 1 1/2 years. My doctor has been giving patients PSCs for 20 years and has never had 1 patient ended up in a Dr.'s office or emergency room for any reason after treatment, not once. There has not been 1 instance when his PSC treatment has done harm.
When I went for my first treatment, I had had CFS for 26 years and had chronic infections the whole time. I had been blowing yellow mucous from my nose daily for decades. PSCs modulate the immune system and increase killer cells. I now no longer have any sinus or respiratory infections, no longer need antibiotics, and no longer suffer from allergies. I am still amazed at how it feels to breath normally and be rid of these and many other symptoms.
I hate to say it but there has been misinformation spread in this country because the medical establishment here wants to delay stem cell treatment. They have focused on embryonic stem cells to that end. The safe stem cell sources correctly administered, would make a multitude of current treatments and drugs unnecessary. Much of what was spread about embryonic stem cells still has people confused. There are many safe non-controversial sources. It is embryonic stem cells that can turn into cancer cells. Not the other sources.
I am pleased that because so many people are seeking safe stem cell treatment outside the US, stem cell treatments are now becoming more available here."
i am kind of confused. do they inject your own stem cells back into your body after purifying them or are they stem cells from another source? if they are from another source, why doesnt the body reject them? if they are from your own body, wouldn't they be infected with XMRV?
Yeah I think that's why GMA has been having less success with adult stem cells than the patients getting umbilical: there is a greater chance of foreign alleles with the umbilical cord so a greater chance of both immunity to certain infections (retroviral) and more potency.
The body does not reject foreign umbilical cord stem cells because they lack the features that can be recognized and attacked by the immune system.
(reposting here from the yahoo group):
I think it's a much riskier assumption to make that stem cell DO NOT replicate XMRV. I'm sorry but unless you tested positive for retrovirus(es) before, you do not have the basis to use your own experience as a proxy for everyone else that has tested positive or is waiting on results. If you would tell us about other clinical markers that changed from pre-stem cell to post-stem cell, that would at least be some sort of basis. Did your NK cells, rnase-l dysfunction, cytokines, etc change?
You criticize the medical establishment for spreading misinformation but please keep in mind you can only counter science with better science, not anecdotal extrapolations based on flawed logic.
m0joey....i thought the WPI found that rnase L wasnt found to correlate with anything ... and the montoya valcyte study found the same thing?
i still get it tested though and i know peterson and demeirleir order the tests...
GMA worked with Dr. Cheney, when they decided about the markers that where tested for. I think one goal of the study design, was to keep the costs for the patient as low as possible, so that as many people as possible can participate.
With their budget, they will not be able to make a "complete" study. I think the goal of their study is to show that some markers are changing so that they can raise the attention of more researchers.
I agree, that a study that tested for NK cell function appears better at this time, but unfortunately view participants are willing to pay for the test.
That makes sense. A cheap way to pick up a little momentum in the right direction.
Input from Dr. Steenblock on stem cell treatment of CFS
I received a recent response from Dr. David Steenblock to my question to him about any experience he might have had in treating CFS with stem cells. Dr. Steenblock has been doing stem cell treatments since November 2006, and has treated a variety of disorders. He has given me permission to share his views.
He responded as follows: "Frankly, I have had little experience with chronic fatigue with stem cells of any type. I recall one case of chronic chemical sensitivity that did well with umbilical cord cells but I don't remember having any other cases. In my personal medical practice experience of about 30 years I saw about 50% of these patients having chronic severe sinus infections that most of them would not believe me and would not take the antibiotics or surgery to get rid of it. Others have chronic stress induced stomach or other GI problems which causes a breach in their mucosa and the foreign substances entering their body activates their cytokines so they feel like they chronically have the flu. This often presents with no other symptoms and it is the rare doctor who will prescribe nexium and other anti-acid preps and put them on bland diets. All of these people should have a month treatment of this when nothing else has been found. So in general I have either cured them with the proper treatment or they have not believed me and gone off to find another doctor who will diagnose them with some other rare disease."
In a communication since the confirmation of the discovery of the retroviruses in CFS, he wrote "Hi, yes I saw the paper and now at least we do have some good evidence of the role of retroviruses. Before, the data was not reproducible as mentioned in the article, but the fact that patients with CFS are seeing improvements with three antiretroviral drugs is good news. Yes, you can use my comments."
In summing up his views on stem cell treatment of CFS, he wrote
"So I favor getting rid of all of the infections, metals and this new virus and when all else has failed then try stem cells. I would not use the fat stem cells but hematopoietic cellls so as to repair their endothelium. If they have auto immune problems then I would add the fat mesenchymal cells."
thanks for getting us steenblock's take on all this.
however, as you mentioned earlier, rich, people with cfs have a very hard time addressing the issues he says need to be addressed first (infections, metals) without us feeling a whole lot sicker in the process.
Yeah, sometimes it sounds like one of those "you can't get there from here" type problems. There has to be a way through the maze, though. We just have to find it. Probably it involves building up the body's systems first, before doing treatments.
Thanks for posting Dr. Steenblock's comments here. It would be great if Steenblock, Riordhan, Rader, and others started doing research on MLVs and XPR-1 receptor lacking stem cells, which would be the analogue to the CCR-5 receptor lacking stem cells that has cured several AIDS patients.
ditto what joey said!
also, we'll hear soon (in a few months) from dipic, and those others who are going to panama now, on any improvements (or lack there of). i am hopeful!
In order for that to work you'd have to use chemotherapy to wipe out your own stem cells, Joey.
However, gene therapy trials are going on to mimic the lack of the ccr5 receptor or downregulate it, along with other interventions to stop HIV from replicating. The ccr5 receptor is redundant so not having one is no big deal. Is the xpr1 receptor necessary for anything in the body?
m0joey....may i ask where you heard that the CCR5 lacking stem cells cured several patients? i cannot find this info. i can only find the berlin patient.
I posted some of my thoughts regarding the chemo in an exchange between Peggy and myself on the CFSMExperimental yahoo group. I got permission from her to post it here:
You can also try a Google Site Search
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