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Stem Cells

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

  1. hubcap_halo

    hubcap_halo

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    Ben,

    Thanks for the update.
    The few first 2-3 months post treatment must be hard--the months when the Clinic doctors and Cheney say to not expect much, if any, improvement. A waiting game.

    Good to hear you've reconnected with that old friend.

    And whenever you hear that Dr. Bell statement repeating in your mind I hope you remember Mike D's words (and his astounding improvement) and also the powerful, new stem cells slowly but surely repairing your brain, heart, gut and more. Give this a few months and even if it's slow, there's every reason to believe you'll improve. Like you said, there's reasons to be cautiously optimistic. Anyway, not trying to blow sunshine up your arse. Just hoping you---all of us improve.

    Wishing you good health.
    hh
  2. dipic

    dipic Senior Member

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    Just to clarify and be fair to Dr.Bell, he never said that recovery or significant improvement from this state was impossible, just that he has not once witnessed it himself. He was also the one who said that this was before stem cell therapy, antiretrovirals, or whatever other treatments that will surely pop up in the future.

    As my other, primary doc often says (not about this topic in particular, but numerous other things) "well, it's possible... but not very probable." I am realistic about what I have but I will admit to being somewhat pessimistic when it comes to my own "unwellness" and potential recovery at times. It has always been a struggle not to be, especially in the first couple years with this illness, but is also something that has and continues to improve with time. Keep in mind, however, that one can be pessimistic, realistic, and hopeful, to certain degrees, about something all at once.

    I keep my expectations realistic; I have my fears, and while they are rational ones, I know I do tend to focus on them a bit too much at times; but, even in my darkest hours, I never lose hope

    At any rate, I do really appreciate the encouragement. It, along with the support of my friends and family is what truly helps me stay in the "right" frame of mind.
  3. Rrrr

    Rrrr Senior Member

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    dipic,

    so good to hear from you!! so glad you are home and recovering and, hopefully, all those good stem cells are busy acclamating (sp?) to yr body, giving it new life, literally.

    would your father be willing to talk to one of us (i'm happy to volunteer) and give his assessment about the experience in panama, and how he sees you doing at this time? then that info can be relayed to this thread.

    warmly,
    rrrr
  4. jenbooks

    jenbooks Guest

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    I don't see any reason you can't recover, Ben. You don't have irreversible organ damage. The stem cells might work over the next 3 months, anti retrovirals or antivirals might work, other approaches might work. It's a matter of isolating the source of the problem--inborn genetic errors, which pathogens, which environmental issues (or all of those).
  5. Michael Dessin

    Michael Dessin Senior Member

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    I do wanna clarify, when I say recover I dont mean cured....because of the genetic component Im not sure if there will ever be a cure.

    Most likely this will be a disease we will have to manage our entire lives....I truly believe everyone with this illness can be functionally well enough to live a productive life. Its not gonna happen on its own and it takes the right tx for that person and a lot of luck.

    I think everyone has there own definition of recovered...Im at 90% functional with lots of lingering cognitive issues and continuous minor cfs symptoms as a whole, but consider myself recovered. A normal person may not be happy to live like this but I feel blessed.

    My first few months of recovery I had relentless exhaustion and my cognitive issues got worse, so if this happens with Ben by some chance, dont get freaked out, theres alot of healing thats taking place in the body, especially the brain kinda doing a rewire in a way.
  6. dipic

    dipic Senior Member

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    Hey Rrrr, I asked my Dad what he thought and while he has no problem with it, I personally fear (and he agrees) that, among other things, his perception of how I'm doing, especially at this time, would probably not be of much use. As far as our experience in Panama, that is a possibility.

    Regarding the illness, and with all due respect to the man who raised and continues to care for me in my poor health, even he will tell you that he is not the most scholarly person. After 30 years of working as an inner-city policeman, and pushing now pushing 60 years of age, I'm not sure he would be the best candidate to describe these things.

    Furthermore, while he understands what I go through better than anyone else in my family (which isn't saying a whole heck of a lot), when it comes to the details of this illness, he is quite ignorant to it in most regards. The majority of it just goes right over his head. Again, I mean no disrespect to the man; if you asked him, I know he wouldn't tell you any differently.

    We have come to an agreement that, I do the research (which "is all Greek" to him) and he will take care of the financial logistics. (unfortunately it's hard to do any research these days, so I make do the best I can)

    That being said, and with that in mind, if you would still like to speak to him, like I said, he would be completely open to it. Just shoot me a PM with info, or info that you'd want (email, or cell # if you'd prefer to speak to him directly) and we can easily work something out.

    Hi Jen, I mean no offense by this... but how would you know that? This is actually a fear of mine. Actually, a bigger fear is that my body has adapted itself to the condition it is in order to function. This vaguely (and not so vaguely) coincides with some of Cheney's theories (as well as broader theories and concepts of pathophysiology.) I have experienced several of what I refer to as "paradigm shifts" in my body and overall condition, even after I fell into what I call my "perpetual and self perpetuating crash." In fact, I consider the first one to be the one that occurred/resulted from when I entered this state.

    Moving on but not away from that thought, it is also my fear that XMRV is not "the one". My personal feelings, going purely off my admittedly limited knowledge, own experiences, and intuition is that XMRV is not the only factor in causing what we call "ME/CFS". I feel there are more factors involved, such are some sort of predisposition.

    Now, that said - if, for example, I took some magic pill or some divine entity suddenly purged all the XMRV from my body, what condition would I now be in? That day, a week, a month, a year from then?

    I would imagine, and of course this is purely conjecture, that I would still be awfully unwell.

    Mike, forgive me as I have not followed the story of your recovery since very early on, but did you not say that you still experience some cognitive dysfunction (and maybe some other lingering symptoms)? There is not a single person I know of who has made a functional recovery from this illness that is completely free of all their symptoms, no matter how mild.

    Now lets take all the speculation and conjecture on my part out of the picture for moment; Jen, you said it's a matter of "isolating the source of the problem" as if that in itself were simple or that that's all there is to it to make one completely or even significantly well again. :worried:

    Again, do I believe a full recovery is impossible? No. But in the immortal (in my mind) words of my primary doc, "well, it's possible... just not probable."

    Anything is possible. I'm sure one day we'll have a cure for most diseases (given our race survives that long)... but how long will that take? How many lives have already been literally and figuratively lost to this illness while government agencies and scientists who are supposed to be solving our illness, have either been sitting around jerking off (pardon the crude fos) or worse yet, maligning and abusing us.

    How many months has it been since the Science paper came out again? And how much progress have we made with that so far?

    I don't mean to sound so bitter or angry but I guess I'm just trying to explain where my pessimism comes from... I think. I don't even know at this point, I'm tired and completely rambling. LOL, I really do need a blog.


    edit: Just saw your post, Mike. Okay, I guess I remembered/thought correctly then. I always say that if I can recover to %50 to what I once was, I could live out a life like that. Naturally, I have had to lower my expectations (like most people this sick?) I would be lying, however, if I didn't say that the worst part of this illness by far for my is the cognitive dysfunction and that I would never feel fully satisfied with my health if I never regained that part of me back. I would rather have a frail, shriveled and utterly useless body as long as I could used my brain to it's full extent. And that's the thing that depresses me the most as it's also the thing that is the least likely to ever come back. :(
  7. kcleejackson

    kcleejackson

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    Just wanted to add this for those of you who do not yet know. Whittemore Peterson Institute is opening August 21st. Some of us still have questions/doubts as to whether or not XMRV is the cause or not but I have spoken with the family via facebook for a while and I know they are dedicated to find a cure and/or treatment for the founders daughter Andrea. Andreas mother Annette Whittemore wrote on Fb that stem cells could possibly help with treating xmrv if it turns out to be the cause or contributing factor.
    At this point I dont really care what causes this disease I just want some relief. I am still in bed 23 hours a day with no hope anymore except stem cells and WPI finding something to help. I kept hearing from the veterans that I would have some "good days" but as I am ending my 2 year mark I am quite skeptical. A good day for me is when I can wash my hair at this point.
    What a life...... (bad month physically and emotionally in case you missed that)
  8. Michael Dessin

    Michael Dessin Senior Member

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    Yea that sums it up, possible just not probable. It definitely feels improbable when your really sick for a long time, more like impossible!

    I have very severe neurological ME and scared shit I may slip back into that one day, if I no longer had access to my lifeline treatment. I know in my heart if I can come back(I know we are all different though) anyone can come back.

    Its hard to describe how fucking retarded my brain was! The brain symptoms you experience with this disease are just so hard to explain!

    It will come back Ben, promise...but again dont be suprised if you experience some real odd cognitive symptoms on the brains journey to coming back, again hard to explain :(

    P.S. sorry KcleeJackson, this was written before I saw your post...please hang in
  9. jenbooks

    jenbooks Guest

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    Ben, didn't mean to sound casual in some upsetting way.

    Do you have irreversible organ damage? I'm not talking about the downregulating/maladaptation that goes on with this illness at its worst. I mean, someone who had for instance a traumatic brain injury that was so severe only partial recovery could be hoped for at best even with all possible interventions. Or someone with a severe infection that permanently damaged an organ, such as kidneys, so that they will never function up to par again.

    I haven't gotten that from your posts. I have gotten that you're very sick, but I personally met an AIDS patient years ago who was weeks from death when the right drugs became available and made a good recovery--back to an active life.

    I'm not so convinced XMRV is the big magilla either. I'm not really following the research at all based on my own (possibly incorrect) assumption that I don't have it, and that it will be involved in some CFS/ME/lyme cases, as an important cause or cofactor, but since I don't really think it's meaningful for me, I haven't followed it.

    It's possible you have a key pathogen on board that you are genetically really unfit for. It's possible you had environmental assaults you don't know about (stuff in the water table, exposures that aren't obvious, or toxic mold you're not aware of). I don't feel it's easy to figure out myself.

    Over about ten years I put together a protocol very slowly. Any part of it that I can't get, if more than 2-3 weeks passes, I start feeling pretty badly. That includes hyperbaric oxygen once every week or two, small amounts of IVIG, a Meyer's cocktail style push and glutathione, as well as a few oral supplements.

    Right now I'm having trouble getting the glutathione part as some doctors use crap oxidized glutathione from compounding pharmacies and don't even know. I can tell. I like to use Wellness. Medaus is also good. Maybe a few others.

    Just curious did you ever try hyperbaric? Portable chambers are widely available and I've seen used ones for as little as $5,000 complete on craigslist.

    I think hyperbaric is way underutilized in this illness.

    I wish you only the best. I'm just saying, I believe you can get a lot better. It may not happen, but it can.
  10. Chris

    Chris Senior Member

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    Ben, hold on--have watched what Nancy Klimas and Judy Mikovits and others had to say in May in London at the IiME conference, and both are steaming ahead full speed--real progress is being made, and will continue to be made. Don't give up! And who knows what those lttle cells may be able to accomplish, given a little time... Best, Chris
  11. taniaaust1

    taniaaust1 Senior Member

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    Ben dont give up. I used to be extreme case (one where i could only handle darkness and no movement or sound about me, extreme pain and extreme weakness) and was bedridden long term and had to be looked after. Im now so much better then I was, to the point where I actually feel like Im living a life. (I still cant work but other than that Im now living a fairly normal kind of life). I can now look after myself, do my own housework, cook etc etc without symptoms. I truely at one point thought I was so irreversably damaged. (my autonomic nervous system is still up the creek and memory some, but other than that i are much better then i was).

    Anyway.. i just wanted to say, you still can end up living quite a reasonable life with this illness. Things can change. I still cant believe how my body has come over time from that state, to where it is today.
  12. knackers323

    knackers323 Senior Member

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    how did you make such great improvements Tania?
  13. dipic

    dipic Senior Member

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    @Mike: I've always felt that my ME/CFS has manifested itself neurologically much more so than immunologically, as the former is where most of my symptoms seem to stem. And the brain symptoms are so incredibly hard to explain, as are many symptoms with with dd. There is just nothing to describe or compare them to.

    Hi Jen,
    I guess organ damage isn't exactly what I was thinking of but rather damage to my nervous system or perhaps not even damage but simply changes... that are irreversible.

    Sorry if I seemed a little peevish.

    For the record, although I'm sure you've already gleaned it from my posts, I tested XMRV+. I am actually, surprisingly free of any other (that I know of) viruses. Don't have any of the Herpes viruses, don't have EBV or CMV, (obviously?) don't have HIV, I don't have Lyme. I realize the latter isn't a virus, so I suppose I should have said that I don't have any other 'infections' that I know of. There is, of course, the possibility that I could have another, currently undiscovered retrovirus (DeFrietas'?) or infectious agent. But the fact that I don't have any of the others, when I know a lot of PWC's do, is a bit comforting and certainly helpful in understanding what I do have and need to focus on treating.

    Hyperbaric is something I am very unfamiliar with, although I have heard of it's use in ME/CFS (don't some use this as a treatment Autism as well?) One thing that sticks out in my mind, however, is Cheney's theory of oxygen toxicity, which is mainly why I have avoided looking further into that.

    Chris
    Cheers! Now did you say that your disc from the Invest in ME conference was defective? Do you know if that was an isolated incident or... I wouldn't mind owning them myself, but I don't want to get a defective set.


    Anyway, I suppose I shouldn't really stress about this stuff right now. I need to be patient and wait to see what the stem cells do (sometimes easier said then done. =/)

    My Dad and I are currently trying to figure out where/how to upload pictures. I will post a link to them when we get that done.

    Ben


    edit:
    Here are the photos. Realized that Picasa (the desktop software) has a feature to upload to their own web albums, which made things simple.

    [​IMG]
  14. Chris

    Chris Senior Member

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    Hi, Ben; there are four disks in the IiME conference DVD set, and the first one in the NTSC set is acknowledged to be defective (mine won't play, and is mislabeled) and is being replaced--they know the problem. Maybe wait a week or so before ordering--but in any case I don't think they will send any more of the defective sets. Just one word of warning--much of the best talks is very complex and technical--really way beyond me, though I can usually follow the gist of the basic arguement. Nancy for instance talks about very recent research showing that during exercise, chronologically the first signs of trouble in CFS patients are all immune--followed by endocrine and others; so she believes immune modulators are a good way to go. Best, Chris
  15. jenbooks

    jenbooks Guest

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    Ben, thanks for updating me. No, I don't follow the board closely enough so did not remember you were XMRV+.
    Hmmm. Maybe it's worth a trial of ARVs? Maybe email Dr. Deckoff-Jones. PM me if you want me to facilitate a direct contact.
    Her daughter is getting better and better on ARVs, as posted on the blog. Might have been as sick as you; basically housebound anyway. I did hyperbaric at her center in Great Barrington years ago.
  16. kg1

    kg1

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    YouTube "ethical stem cells now" is a trailer to a 90 minute video about cord stem cells in Mexico with steenblock and ramirez
  17. kg1

    kg1

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    If xmrv is the cause of cfs, would an autologus stem cell treatment be useless because the stem cells have xmrv? Would a product like stem kine be usless for the same reason?
  18. Navid

    Navid Senior Member

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    thanks for sharing pics.

    know you are not feeling better....but unbiased observation. your skin color and facial "plumpness/hydration" look much better post stem cells.

    hope you recover.

    best of luck

    warmly, shebacat
  19. Rrrr

    Rrrr Senior Member

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    Just a warning about taking antiretrovirals after stem cells: there is talk by CFS and xmrv researchers that ARVs *after* stem cells will kill or damage the next stem cells.

    rrrr
  20. Rrrr

    Rrrr Senior Member

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    mr. kite: i, too, have been at that place where my legs felt like rubber bands and i could barely walk, and my brain was so screwed, i could not put thoughts/words/ideas together. it happened most often, tho not always, when trying different new supplements (twice with glutathione and once with sulfur baths and MSM). i seriously thought i would never ever "come back" to my "usual normal hell" -- but i did. so hold on to hope!

    i wonder if the stem-kine could be triggering this new horrible state for you? do they correspond, the new horrible symptoms and the starting of stem kine?

    separately, there is a discussion on neurofeedback (and the LENS method of neurofeedback) on another thread on this forum. some folks got help from it and others strongly felt they got permanent brain issues from it.

    i think my brain got very messed up from it. wrong words, missing the teacup while pouring from the teapot, etc. i got increased energy, but a messed up brain. so i stopped. honestly, it was not clear if it was the neurofeedback (LENS method: 2 months of therapy) that messed up my brain, or if it was the homeopathic remedy i tried (one pill, once), or the combo. but i stopped the neurofeedback and my brain got better after 3 long months of screwed-up-brain-hell.

    just my experience. i know others with cfs who love neurofeedback.

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