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Stem Cells

Discussion in 'General Treatment' started by deb obrien, Aug 13, 2009.

  1. Rrrr

    Rrrr Senior Member

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    excellent find by forum member Impish on another thread that may relate to our thread. here is the other thread:
    http://www.forums.aboutmecfs.org/sh...ng-for-MuLV-s-and-how-they-cured-them-in-mice...

    and this is me summarizing Impish's notes from the above thread.

    this paper looks helpful: "Search for oncogenic retroviruses in wild mice and man: Historical reflections"
    http://www.cancer-therapy.org/CT6A/HTML/31._Gardner,_285-302.html

    in this paper:
    - they mentioned the spleen as a "virus factory" which suggests a place to look for MuLV in humans.
    - They also mention using immunoglobulin as a suggested treatment (for mice)
    - mentions that anti-retroviral's worked to protect mice from the CNS disease associated with MuLV's.
    - MuLV's cause a CNS disease in mice suggest that they are on the right track with MuLV's = CFS.
    - The fact that anti-retroviral's worked in mice again provides an animal model backing up what has been observed in humans taking them. Obviously it will be interesting to see what strains are affected.
    - in the article that they found MuLV's in clusters (like CFS).
    - They found that some mice don't get MuLV due to genetics.
    - Since we know what gene's protect mice we should be able to look for similar gene's (or the lack thereof) in humans and relatives with CFS. That would provide absolute proof (IMHO) that MuLV's are causing CFS.

    Quote from the paper: "Contrary to expectations based on the AKR mouse model, control of MuLV and prevention of lymphoma and paralytic disease in the high MuLV expressor LC mice was dramatically accomplished, as mentioned above, by foster nursing on virus-free NIH Swiss mothers (Gardner et al, 1979). Surgical removal of the spleen, the “virus factory” early in life, lowered the virus burden sufficiently to prevent the CNS disease completely and markedly reduced the incidence of lymphoma. Passive immunization of newborn LC mice with goat immunoglobulin, having a high neutralization titer to ecotropic virus and a low titer to amphotropic virus, completely prevented the paralytic diseases but only slightly lowered the incidence of lymphoma (Gardner et al, 1980b). Active immunization with inactivated LC MuLV had no effect, of course, in already infected immune tolerant LC mice, although they responded well to a heterologous MuLV vaccine and other foreign antigens (Klement, 1976). A decade later, the beneficial effect of transplacental anti-retroviral therapy with azidothymidine was shown in lab mice that were protected against the CNS disease after inoculation with LC ecotropic MuLV during mid-gestation or at birth (Sharpe et al, 1987). This is the first example of successful antiviral therapy for congenitally transmitted retrovirus. Finally, selective breeding could strongly suppress LC-MuLV. Because the MuLV of LC and other wild mice is N-tropic, i.e. grows preferentially in NIH Swiss mouse cells, and not in BALB-C mouse cells (B-tropic), introduction of the FV-1B virus resistance gene from C57 BL-10 inbred mice completely blocked LC MuLV expression in the F-1 hybrids (Gardner et al, 1976b)"


    so that means that if we can get stem cells from someone with FV-1B virus resistant gene, we may be able to block some of the MuLV? would this be like blocking the CCR5 gene in HIV patients?
  2. jenbooks

    jenbooks Guest

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    NO.

    I have explained this previously on this board, probably this thread.

    The German patient had cancer (I believe leukemia) so he was having a bone marrow transplant anyway. To do that you first get chemo to wipe out your immune system. That clears "space" for the transplant of stem cells from donor bone marrow, which then replicate and re-create a new immune system, in this case, without the CCR5 receptor. In order to tolerate the bone marrow *TRANSPLANT*, like any organ transplant, you STAY ON IMMUNOSUPPRESSANTS so you don't reject the "organ".

    This is *not* a therapy you want to think about, nor does it apply. And who says what an FV1B virus resistant gene is? There is tons of work to be done before we would know what that looks like. The CCR5 receptor is REDUNDANT. The body can fill in its work with other receptors. 1% of Caucasians lack the CCR5 receptor. I don't know what the FV1B receptor does. I haven't read anything, but for all we know it may be useful.

    There is much work to be done. We can't jump ahead of the scientists. They know what they're doing.
  3. Daffodil

    Daffodil Senior Member

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    whats FV1B? i thought it was the XPR1 receptor being used by XMRV (which does have other functions)

    thanks
    sue
  4. jenbooks

    jenbooks Guest

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    You're right, Sue. I'm not sure what it is and just quoted Rrr's post without thinking; she's quoting a mouse study.

    Hope, by the way, you're feeling a bit better.

  5. fairlight

    fairlight

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  6. mojoey

    mojoey Senior Member

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    I just wanted to repost this from the thread http://www.forums.aboutmecfs.org/showthread.php?7403-Eradicating-HMRV-(or-whatever-they-name-it-next)&p=122264#post122264on eradicating HMRV:

  7. jenbooks

    jenbooks Guest

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    I would still get stem cells myself and not worry too much--but I am mindful of the gene therapy work, where tweaked/defanged MLV's used as vectors still caused cancer because when they landed near an oncogene in a stem cell, their promoter sequences switched it on. So theoretically you could get some event like that, although in the gene therapy situation, their immune systems were basically wiped out prior so the new stem cells with the proper gene could proliferate and create a new immune system with no competition.
  8. mojoey

    mojoey Senior Member

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    I would be far less worried about tweaked MLV vectors used in gene therapy than intact, infectious MLVs as well, jenbooks. What is your take on patients that do have infectious MLVs getting stem cells? I posted a study in the eradication thread about a study on chemo to wipe out the immune system followed by stem cells, and the HIV virus still actively replicated after that, so chemo may not be sufficient to prevent reinfection of stem cells. Hence it seems far less likely that stem cells without chemo would modulate the immune system enough in most patients to prevent reinfection.
  9. Chris

    Chris Senior Member

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    Victoria, BC
    Hi, Joey--thanks for posting that here. Maybe it accounts for the fact that I seemed to be responding positively to Stem-Kine for a while, but recently have had a spell of feeling pretty low again--not major crash, but bad enough to make me stop and rethink.. will stop SK for a while, and also AHCC, which though promoted as an immune modulator, seems to have some stem cell mobilizing effect--in fact, it looks as if the two functions are intertwined --and, to paraphase Shakespeare, there are mushrooms in both. Best, Chris
  10. jenbooks

    jenbooks Guest

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    Joey, too much is yet to be discovered about MLV's. Could be the beginning of an era where we discover that for ages we have carried adapted retroviruses from species we cohabit with, avian, murine, etc. Maybe we will discover they are implicated in various diseases with the key cofactors of 1) vulnerable genetics 2) synergistic pathogens that upregulate and increase virulence 3) toxins in the environment generally suppressing immunity etc etc.

    We just don't know that XMRV or MLV's are causative of anything. I tend to think they smolder and are implicated and perhaps under the right conditions go haywire and need treatment, of course I could be completely wrong. Not enough people are responding to ARVs, even of the perhaps dozen or twenty taking them, for me to be convinced that these MLVs are causative, period.

    You *should* be worried about the promoter sequences, though. That's what would switch on your own HERVs or bad genes if integrating int he wrong place in a progenitor cell.

    I would treat with stem cells today if I had the time and money. I'm just too overwhelmed trying to write and find a home. This homelessness thing is really horrible, but having recognized how I react to chemicals and molds, I don't feel I can live in regular housing anymore, without just staying sickish or backsliding. I believe I will probably treat with stem cells eventually. And I won't worry too much about it.
  11. mojoey

    mojoey Senior Member

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    A few of has come to a tentative conclusion in the eradication thread that HAART wouldn't be very successful for MLVs, even in theory. In fact I'm puzzled as to why it works for Jamie and Ali, and from what I've heard about Dr Brewer's 10+ patients on HAART, a positive outcome is the exception rather than the rule. There is also a high degree of variability, a degree to which hasn't been seen in AIDS patients treated with HAART.

    The focus of our discussion at the moment is restriction enzyme systems which would either cut or hupermutate the proviral DNA and turn it into non-infectious junk DNA. In that case, they may then become HERVs which, as you mentioned, could still be activated by promoter sequences. First thing's first though, and that's resolve active exogenous retroviruses, if the pathology is shown to be existent in CFS patients. You're right, there is still much to find out: I just wanted to alert people to what is known, and potential consequences. I've always said the decision to treat is ultimately up to each of us and the basis should be our own due diligence, so I completely respect your decision either way.

    One last thing: restriction enzyme systems should theoretically target HERVs when activated too, but in practice it may require some guidance in the form of gene therapy, vaccines, or homeopathic therapy.
  12. Daffodil

    Daffodil Senior Member

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    i would like to know how fast the infected cells decay via our innate immune response. i guess they are a long way from knowing this :-/
  13. Daffodil

    Daffodil Senior Member

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    this article states that for HTLV-1, which is probably a better virus to extrapolate from than HIV, we need new kinds of drugs to target infected cells...the HIV drugs do not work. i am sure this is going to be the same story for XMRV/MLV.

    http://jac.oxfordjournals.org/content/51/6/1327.full

    i have to wonder, even for the people who are improving on HAART, will they need additional treatments? will the infected cells keep undergoing mitosis, making the reservoirs increase?
  14. jenbooks

    jenbooks Guest

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    Joey, is that info from Brewer direct, or from the newspaper quote?
    Jamie's blog has one success story of a teen...

    I am speculating they are doing well because they did so much aggressive IV antibiotic and antimalarial treatment (two years IV, and I believe lots of orals before at least for Ali?), then when they finally went off, recovered from the toxicity aspect. They started to feel better then. In addition, they do other treatments, as I've mentioned. Saline IV's, bioidentical hormones (for Jamie anyway), selegeline (Jamie), the Rx form of methylfolate which I think is called Deplin or something. Can't remember. Don't know more details but it is a rather complex and complete program. Suppose they eradicated all other pesky infections, and now they are treating a retrovirus?

    I don't know what to make of it, either, frankly. I do believe they're both very improved but I also have no clue what symptomatology is left.

    And for me, even if I'm "active", if I'm symptomatic I feel that I am sick. Symptoms intrude. Especially MCS and mold reactions. They can cause me lots of inflammation, aches, and bad moods. And I don't call that health, Karnofsky scale be damned. (Excuse my language).
  15. mojoey

    mojoey Senior Member

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    Hey jenbooks,

    I can't give out my source for that info, but the info is hale and hearty as far as I'm concerned.

    If your hypothesis about dr Jamie is true (about treating all other infections) then it should apply to me too. I've treated TBIs, did methylation, ozone, and so much more. I'm in a location that slayadragon says is very good in terms of mold. all that's left for me is the retrovirus. Maybe I'd do well on the drugs too, but I don't wanna be on them forever. As long as permanent resolution is a viable goal, I'm gonna hold off on drugs that would increase resistance and viral tropism.
  16. Daffodil

    Daffodil Senior Member

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    m0joye how can you think that a permanent solution can exist for a retrovirus? it just cant..not for another 30 yrs
  17. jenbooks

    jenbooks Guest

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    Well I trust your source, you've never steered me wrong. So that is even more puzzling, isn't it?

    You're not nearly as ill as they were, from what I can tell. You have lots of time. I agree, your going on ARVs now is premature. Let's hope Ampligen gets fast tracked.
  18. kcleejackson

    kcleejackson

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    Anyone heard from Dipic?
  19. mojoey

    mojoey Senior Member

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    Has anyone heard from any CFS patients that went in group 1?
  20. dipic

    dipic Senior Member

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    Hey all,

    I'm around. Sorry I haven't updated in awhile, but that's mostly due to there not being much to update. Also, my brain has been really "fried", moreso than it has ever in the past, and my cognitive dysfunction at an all time low, making it harder to read/write clearly. My sleep has been quite poor as well, only making matters worse.

    Anyway, it's been... let's see... a bit less than 3 months since I came back from Panama? Again, I don't have a whole lot to report in terms of improvement or anything much really. Cognitively, I'm at an all time low, however, I've experienced some symptom relief/partial remission. I do not attribute this to the stem cells but rather a "shift" in my condition (which occurred a couple weeks before I went to Panama) and/or my current use of Klonopin (which, incidentally started around the time I had my "shift" or "flip" as some call it.)

    I had originally taken Lorazapam (generic of Ativan) for about 2 or so years for neuro problems, anxiety, and for sleep before I decided to switch to the more doctor and patient recommended benzo - Klonopin (which I take the generic of - clonazepam - if that matters.) I was taking about 2 to 2 1/2 mg of lorazepam every night before bed before I switched to Klonopin. I had built up a high tolerance after using it for so long. When I first started I only needed 0.25mg to notice an affect. As I grew sicker and more tolerant I slowly increased. I'm now taking 2mg of Klonopin before bedtime, which is quite on the high side to be sure.

    Again, this sort of "shift" in my condition and the switch of benzos happened around the same time so I do not know what to attribute my lessening of certain symptoms to. Either way, while most people tend to find this to be a positive thing - and I will agree to an extent (I certainly do not miss the sensations of the nerves in my spine feeling like they are going to "jump out" of my spine); people also tend to take this as an improvement. Again, while it may be an improvement in symptom expression or what have you, I do not believe that I have improved in an overall or forward direction. I don't believe improvement is quite such a linear thing, but I will say that, if anything, I more disabled/functioning less/cognitively impaired than I've ever been during the course of this illness.

    Skimming through the thread (that I believe Christopher started?) about Klonopin was enlightening; especially a comment a user (again, sorry if I'm wrong here, but I believe his name was Bob) made about the drugs affects on him. While some of his symptoms lessened, and he felt like he could do more in some ways, when he tried he noticed that he crashed just as hard as he normally would. So, not an actual functional improvement... or well, in his case, perhaps? What is it that I'm trying to say... having trouble phrasing it. The way I feel is that I personally have felt is that I have become "numb" to certain symptoms, but have not made any functional (again, maybe not the right word... anyone? heh) improvement. My experience seems to echo or at least appear to be similar to quite a few people's experiences from the Klonopin thread. No way I can no for sure, one way or other... probably never will, but those are the only reasonable explanations I can think of.

    Anyway, sorry, I'm rambling. I will be sure to post any significant (or even not so significant) changes, especially if they are an improvement of some sort. In the meantime, I just continue to do what we all who continue on do when there is nothing left for us to do - wait and endure.

    Considering I tested so strongly for XMRV, I am waiting (quite impatiently :p) to see where all that goes. Joey, your "eradication" thread has been interesting to read (at least from what my poor, burnt out brain has been able to glean from the posts in it.)

    Oh, also, I haven't heard from anyone who went in "group 1". Considering I went by myself, I never met any of these people. In fact, I wasn't even aware whether or not a first (or second) group was even going or when. *shrug*

    Eh, and one more think I guess I think I'll mention - I unsubscribed from Cheney's newsletter due to lack of info. Seemed like a waste of money. (2 new unimportant updates after a few months of nothing?) To be fair to Dr.C (though not that I believe it justifies the lack of updates to his site for subscribers), I am told from a very close and reliable source that he has been indeed extremely busy; working on many projects at once.

    Anyway, take care all,
    Ben

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