I answered in Dog lovers thread a comment about stem cells which I will copy here cause I would like to discuss stem cells without hijacking doglovers thread
What I said was, quote
And my hope is stem cell treatment for healing once the germ is gone. There are interesting findings all over the world wherein they simply take some marrow from you and filter out the stem cells, multiply them in the lab with growth factors then give tham back to you as a personal very specialized kind of transfusion.
When Mark Freedman MD of Ottawa university did a traditional stem cell transplant (with chemo to kill your marrow) they discovered that 2 years after the transplant the people had sudden unexpected improvements. These they attributed to stem cell regeneration of nerve pathways that took that long to be obvious.
But now it appears people do not need the chemo/radiation part traditionally used to kill off the "abherrent immune system" as they used to think, the stem cells do the work all by themselves.
This procedure holds promise for those of us who have damage that impacts quality of life in an overwhemling way. Everyone wants to be able to get around, and I have yet to meet someone who doesn't feel that if they could get anything back, even just one thing, it'd be a blessing. But it is also true that people make stem cells in the brain all the time. If the MSi process can be stopped then some healing could/should take place. Even people with strokes who are years after with aggressive therapy can regain more function, and they have entire parts of the brain dead, now that's some serious rerouting! The difference between strokes and MS is for most with MS the process of damage is ongoing, and a stroke is a one time deal. I think our outcomes can resemble a stroke person's with effective treatment
marie
Mack responded phenomenal you should do it, and now I want to say;
Hi Mack, it's not really available yet, you can go out of the US and get it at for profit clinics in Mexico--the clinic is run by a US doctor but the transplants are not FDA approved so hence done out of country-- But the cost is 45,000 dollars for me personally because I have both RAi and MS. According to their model, the RA requires hematopoeitic stem cells and the MS mesenchymal, thus 2 treatment rounds. I think that assessment is accurate, but studies are ongoing as to what stem cells when to apply them and how exactly--into the spinal fluid or is just in the arm OK? It'd be a shame if it works best into the spinal fluid and you did it as a peripheral IV cause the clinic where you were did it that way...
BTW There are other clinics all around the world, some offer "cord blood" others self stem cells as I described, many hematopoietic and a few mesenchymal (harder to get). I am personally waiting for it to be available in the US and a few more studies. Not to mention that 45,000 dollars is WAYYY too much for something that is, at this point, not well defined as far as what transplants work for what disease stage etc. That does not stop me from watching this procedure carefully and with intense interest. If I won the publishers clearing house or something you bet I'd be doing it ASAP.
The big issue for me is that it is not fair for my beloved husband to chunk that large a piece of the retirement money we've so carefully sheperded all these years for anything less than a pretty sure bet. I've been expensive and it has been difficult to get retirement money set aside at all. I feel really guilty about that. With costs like 45K it'd be pretty easy to squander all of our savings including retirement money, and my personal belief is that a few of these treatments would be needed, not just one. It has to be more than just speculation and hypothesis for me to feel OK about gutting our finances, but I know he'd be delighted if it proves helpful.
If it works and there are more studies into it, it will end up being approved by the FDA and it should be available everywhere that they do stem cells transplants for leukemia patients, in other words at every big hospital.
I predict that if it becomes obvious that it is a treatment of choice for autoimune diseases, hospitals will set up "specialty clinics" like they do for dialysis which cater to this population of people.
Anyway, this specialized kind of personal blood transfusion holds promise in my eyes for those of us with more limited function. Combined with CAPi, it is possible we might be better than ever imagined.
marie
___________________________________________________________
On CAPi since Sept '05 for MSi, RAi, Asthmaii, sciatica. EDSSii at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
Marie, I know of someone in
___________________________________________________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Mack Yeah sure, though my
Mack Yeah sure, though my personal belief is that more than just stems are needed obviously if it is true CPn causes MSi then any other approaches are less likely to be complete without abxi at some point.
BUT what if.....really, what if....stem cells helped HEAL infected cells? They re pretty omnipotent in the body regarding healing.
I listened to Dr Prockop from Tulane in louisiana, who is developing a protocol for how to obtain, grow and redeliever stems in autoimmune disease, talking about how stem cells work.
They gave human stem cells to diabetic mice. Not only did the stem cells repair the islet cells of the pancreas and result in the mice making human insulin and being cured of diabetes, but it ALSO healed the kidneys which had been damaged by the diabetes which was unexpected cause they did not put them there. Dr P said the end fact is that stem cells are like emergency vehicles inside the body, they rush to areas of inflammation and damage and are like one cell healing machines. They alter chemokines turning some on and some off, modulate immune response, intiate healing growth factors and really are impressive in the scope of their ability to heal damaged areas.
This is a really intersting area of research to me, I see it as an adjunct. I can't find anything on stem cells healing or being used in infections like TB or CPn. In fact most stem cell things you read are about the kind with the chemo and radiation which puts people at RISK for infection...
It really makes it hard to evaluate when the common phrase "stem cell transplant" means two things like that; one really dangerous and risky with long term side effects, one no more so than a blood transfusion from your self.
marie
___________________________________________________________
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
Stem cell surgery was being
Stem cell surgery was being done via Northwestern
Gen. Hosp. a few years ago. All I do know for sure is that I was cut from being a possible recipient after they spoke to my neurologist ,at the time ,but no more, once neuro told them about lyme disease diagnosis. It seems that put me even further back.I think a possible cpni diagnosis would probably do likewise but not sure?I will follow stem cell posts and I will also submit anything I hear or find out.I think we all have to be careful
with what we say and divulge. If you guys think I'm wrong, please tell me?
Loulou
___________________________________________________________
diagnosed MSi Jan.2000 , chronic neurological lyme disease Nov.2002.
doxyi 100 mg. 1BID. roxyi.150 mg.? BID,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, no rifampin as yet, just doxy and 1 gram daily of IV ceftriaxone, soon to
hi lou lou Well lets get
hi lou lou
Well lets get this cleared up because I run into this all the time. When people say stem cell transplants with regard to MSi what they almost always mean is putting you in the hospital and giving you an overwhelming dose of chemotherapy then radiation that will kill your immune system completely. In one of 20 patients in early trials it killed the patient as well. After they have done that then they give you the stem cells and your immune system will rebuild from that.
It is done with the belief that MS is autoimmune and if they can kill off the abherrent immune system, even if it is so drastic it almost kills you, then when the immune rebuilds it will hopefully NOT restart the autoimmune process; it will have rebooted itself, and the new immune system is going to be normal, no attacking your myelini. You will actually have to get your baby shots again.
the whole point is to kill off the immune system, getting stem cells is kind f just necessary to get you going again, it is not really about the stem cells being helpful for you it is about the killing of the abherrent immune system.
It seemed to work somewhat but people actually did get worse with time, though some early results did seem somewhat promising with less lesions etc. Though as with everything MS, those lesions do not tell the whole story. Some folks still had cllinical losses in function and increased EDSSi scores.
THe biggest danger for this type of treatment is in the phase where your immune system is killed off but you have not rebuilt the new one yet. People who have latent TB infections and otherwise undetected infections will find they get out of control, with flareups that reqiure high doses of abxi, or anbtifungals or whatever is needed for the specific germ involved. Sometimes the infection is very dangerously bad and occssionally fatal becauswe the immunity is gone at that time.
A contraindication for this type of treatment is any kind of chronic infection. I suspect that was the kind of treatment you were possibly going to get as they stopped it when they heard that you had lyme.
What I am talking about is different: no chemo no radiation no killing the immune system. The immune system is perfectly normal and protecting you as usual all the time, they JUST give you the stem cell part.
The amazing hting about this is that it helps WITHOUT "rebooting" the immune system by killing it. it is safe for the patient, and it seems to modulate the immune system without any killing at all involved, it is just as I said before a kind of specialized self blood transfusion, and no more risky than setting aside some blood for yourself a few weeks before you get surgery in case you need it.
To summarize an autologous stem cell transplant (self stem cell transplant) can have ablation i(killing of the immune system) or be without ablation. I am talking about without ablation. It is a newer type that is being looked at, the type with ablation is an older apprach and largely abandoned becasue of its high mortality rate and less than great results.
I hope that helps.
blessings marie
___________________________________________________________
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
Does anyone know of stem
___________________________________________________________
Mary Ann
SPMSi. Dx 1991. EDSSi 6.5. Weldon CAPi; 3/08 NAC 2400, Doxy & Azith. 7th metroi pulse 12/08
No firsthand knowledge, but
___________________________________________________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
http://www.youtube.com/watch
http://www.youtube.com/watch?v=2TIXQfo7WHY
Since with my husband who now has leukemia and we are headed at this time down the stem cell bone marrow transplant has led me to study a lot of what Marie is postulating. The you tube clip above is fascinating and I have studied exactly what they did in this patients case in more scientific articles. I believe there is a lot of hope here.
___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Daisy, me too! Some of us
Daisy, me too! Some of us are just going to need it It has been along time since I have been able to see the black hole in my MRI. It just seems that it MUST be attached to my leg it still won;t bend and the foot drops all the time. At this point I really don't expect that to go away, thus you see me looking at stem cells...
blessings and I wish you well daisy, think of you often.
___________________________________________________________
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
As you probably know Hamish
As you probably know Hamish has had a bone marrow transplant, which was preceded by extensive chemo to kill all or most of his bone marrow. He is coming up to his second birthday of new bone marrow and his blood counts are good. It was necessary to kill most of his bone marrow to stop him from relapsing again, but that means that effectively he has been without an immunei system since that time. It is gradually picking up speed, but most of the problems he has had since the transplant have been associated with low immunity: shingles, colds and fungal infectionsi that won't clear up, warts, cold sores, mouth ulcers and low imunoglobulin levels that need topping up at great expense and regular intervals.
The transplant has been a life saver for him, but he has been warned that he may suffer from these relative small illnesses for the rest of his life.
Treatment that does not destroy the immune system must be preferable even in so called 'autoimmune diseasesi'.
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006