dipic
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slayadragon
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I talked to my own longtime CFS physician, Dr. Dale Guyer of Indianapolis, yesterday.
He spontaneously brought up the idea of stem cells as being a possibility for me. I'd been thinking the same thing: that apart from chipping away at Lyme and continuing detox, that seemed to be the only therapy left that seemed to really seem like it might be useful.
Dr. Guyer suggested that he thought that stem cells would be more useful to people if they already were well on the way to wellness.
I've been thinking something similar, though from my own vantage point.
It's my strong belief that one of the reasons that many CFSers got so sick to begin with was because they were living or working in really sick buildings.
Once people get sick from such buildings, merely moving out isn't enough to get them well. Something more seems to be required. Intensive detox (e.g. neural therapy) seems to be one route. Extreme mold avoidance (and the detox that the body does naturally when it gets really "clear" of mold) is another.
I think that stem cells might be another way to make that happen.
But my question when I hear these stories is: if people go back to the same buildings that made them sick to begin with, won't they eventually get sick again? NOBODY should be living in bad buildings, and that's especially the case for people who already have demonstrated a propensity to get sick from them (e.g. because they have bad genetics and/or the presence of XMRV).
It would be interesting to have information on the status of the homes of individuals who have undergone stem cell therapy. If people who are in better environments had better or longer lasting results, that would say a lot.
For instance, it's my understanding that Joey has moved about a good deal since getting sick but hasn't made a great deal of progress. I would think that would mean that his current living conditions at least aren't TERRIBLE therefore. (Whether they were at the beginning of his illness, I don't know. This stuff is hard to find and present outdoors in some places, so it's hard to rule out.) I thus would think that stem cells might well be a good kickstart into a substantial enough boost in wellness that would allow him to be able to benefit from other treatments (which is what extreme mold avoidance did for me).
My own feeling for myself is that maybe I'm at the level of wellness that the stem cells would reboot me into full wellness. I'm pretty close, but detox is really painful still. (The idea that XMRV's main effect is somehow breaking the system's detox abilities is seeming increasingly plausible to me.) And various biotoxins (Lyme, mold, maybe other stuff) are continuing to affect me, insofar as I don't avoid them or keep them under tight control.
I'm wondering: how many of these $10k stem cell treatments would I likely need in order to achieve benefit?
Don't most of Cheney's patients get several of them?
Is it possible that I would need fewer of them, since I'm pretty close to being well already?
Thanks for any comments that folks have.
Best, Lisa
He spontaneously brought up the idea of stem cells as being a possibility for me. I'd been thinking the same thing: that apart from chipping away at Lyme and continuing detox, that seemed to be the only therapy left that seemed to really seem like it might be useful.
Dr. Guyer suggested that he thought that stem cells would be more useful to people if they already were well on the way to wellness.
I've been thinking something similar, though from my own vantage point.
It's my strong belief that one of the reasons that many CFSers got so sick to begin with was because they were living or working in really sick buildings.
Once people get sick from such buildings, merely moving out isn't enough to get them well. Something more seems to be required. Intensive detox (e.g. neural therapy) seems to be one route. Extreme mold avoidance (and the detox that the body does naturally when it gets really "clear" of mold) is another.
I think that stem cells might be another way to make that happen.
But my question when I hear these stories is: if people go back to the same buildings that made them sick to begin with, won't they eventually get sick again? NOBODY should be living in bad buildings, and that's especially the case for people who already have demonstrated a propensity to get sick from them (e.g. because they have bad genetics and/or the presence of XMRV).
It would be interesting to have information on the status of the homes of individuals who have undergone stem cell therapy. If people who are in better environments had better or longer lasting results, that would say a lot.
For instance, it's my understanding that Joey has moved about a good deal since getting sick but hasn't made a great deal of progress. I would think that would mean that his current living conditions at least aren't TERRIBLE therefore. (Whether they were at the beginning of his illness, I don't know. This stuff is hard to find and present outdoors in some places, so it's hard to rule out.) I thus would think that stem cells might well be a good kickstart into a substantial enough boost in wellness that would allow him to be able to benefit from other treatments (which is what extreme mold avoidance did for me).
My own feeling for myself is that maybe I'm at the level of wellness that the stem cells would reboot me into full wellness. I'm pretty close, but detox is really painful still. (The idea that XMRV's main effect is somehow breaking the system's detox abilities is seeming increasingly plausible to me.) And various biotoxins (Lyme, mold, maybe other stuff) are continuing to affect me, insofar as I don't avoid them or keep them under tight control.
I'm wondering: how many of these $10k stem cell treatments would I likely need in order to achieve benefit?
Don't most of Cheney's patients get several of them?
Is it possible that I would need fewer of them, since I'm pretty close to being well already?
Thanks for any comments that folks have.
Best, Lisa
mojoey
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Hey Lisa,
Honestly I've been thinking the same thing. I think a combination of therapies is most likely to help people, especially one that reduces infectious loads and toxic loads prior (such as neural therapy, immune modulators, antivirals, antibiotics etc) prior to stem cells.
Did you mean to say that my current living situation isn't too bad, or my previous living situation (where I got sick) wasn't too bad since my status hasn't changed much with the moves? I know a few patients that moved to Columbus that came from very toxic environments that didn't improve just by moving, but obviously you've been following more people for a longer period of time.
As for how many infusions, yes I've heard of a few Cheney patients that got multiple infusions, but I'm not sure if they are part of his "prospective study" where he's following patients 12-18 months out. Obviously multiple infusions would skew the study results .
I think it absolutely makes sense that the better off you are at baseline, the less infusions you'll ultimately need.
Honestly I've been thinking the same thing. I think a combination of therapies is most likely to help people, especially one that reduces infectious loads and toxic loads prior (such as neural therapy, immune modulators, antivirals, antibiotics etc) prior to stem cells.
Did you mean to say that my current living situation isn't too bad, or my previous living situation (where I got sick) wasn't too bad since my status hasn't changed much with the moves? I know a few patients that moved to Columbus that came from very toxic environments that didn't improve just by moving, but obviously you've been following more people for a longer period of time.
As for how many infusions, yes I've heard of a few Cheney patients that got multiple infusions, but I'm not sure if they are part of his "prospective study" where he's following patients 12-18 months out. Obviously multiple infusions would skew the study results .
I think it absolutely makes sense that the better off you are at baseline, the less infusions you'll ultimately need.
It just seems to contradict everything else I have read concerning the clinic and its shutdown. I have looked through the published articles by the SCI/ICM staff and have never seen any reference to embryonic stem cells. ESC's do not appear to be a part of their business.
Here is a quote from a letter sent out by Neil Riordan (on 4/21/2010) in response to the 60 minutes segment:
"As many of you know I am vehemently opposed to the use of embryonic stem cells as they will and do cause teratomas (benign tumors). To date there has been no safe use of embryonic stem cells published in the literature. Adult stem cells, on the other hand have been used clinically for some time in the treatment of many diseases without significant side effects."
Yet the TMCNET article says:
Avila said the clinic could have continued operations using adult stem cells, but "the only thing they can't do is use embryonic stem cells as a form of treatment because the health ministry prohibits it.
The article also contradicts Reuters, which says that the Health Ministry shut down the clinic because there was no proof the ACS treatment was effective. It never mentioned embryonic stem cells. Until I see something to corroborate the TMCNET article I am going to assume it is false or mistaken.
slayadragon
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Hi Joey,
I was suggesting it's hard for people to know what their living situation was when they got sick. Some people (like Mike) know that theirs was bad. I never knew that mine was. (Even after I got remediators to come in, they STILL didn't know right away! They had to pull out the walls to realize how bad the problem was.) And some people have outdoor biotoxins as an issue.
But I would think that if you've moved locations a lot, the likelihood that you're currently in a bad place is a lot lower than those people who are still living in the same place, or who moved residences but brought huge amounts of already-contaminated possessions with them.
You're right: just moving doesn't do much for anyone who already has CFS, it seems. Life should be so easy!
(It might keep them from getting worse or allow them to benefit from other treatments though.)
I'm amazed at how much the Valcyte/Famvir helped me, after "extreme" mold avoidance. And the neural therapy has been extremely helpful too.
Obviously CFSers have all kinds of things wrong with them.....viruses, Lyme, various toxins. But we all know that killing bugs is really difficult for us. And detox is just as difficult. (Cheney's recent comment was, "Detox at your peril!")
We're never going to get well if we've got all those bugs and gunk in our bodies. So getting some kind of foothold to allow us to start addressing them (rather than using the foothold as the end-all and be-all) seems right to me.
Mold avoidance has been a good foothold for me, but it's been hard. It would be nice if something like stem cells could do the same thing.
Or maybe stem cells first as a foothold, then address other things, and then stem cells again to finish things off?
I don't think any of us will be able to withstand heavy exposures of toxic mold, ever. No one should be living in a really bad building or in heavy contact with other biotoxins, and that's especially true of us.
But a repaired system should be able to withstand light exposures. At least, that's where I'm getting to myself.
Anyway, it seems to me that if you do this and then, when you return, attend to your environment and continue addressing other core elements in a proactive way, you have a good chance of getting really well.
At least, that would be consistent with my own current beliefs about how to do it.
Best, Lisa
mojoey
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I think the only way for us to withstand mold like "normals" is by transplating with stem cells that don't have the HLA haplotypes indicating difficulty with mold detox. The same goes with immunity to Lyme, xmrv a la the HIV patient that gained immunity post-transplant.
Too bad that's probably many years away.
No way I'd be going for stem cells now if I knew researchers were working on isolating xmrv-immune stem cells.
Too bad that's probably many years away.
No way I'd be going for stem cells now if I knew researchers were working on isolating xmrv-immune stem cells.
dipic
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Thank you for your response and clarification but if you could, please read these quotes from the article:
There is no possible way that TMCNET could simply be mistaken, in my mind. They would have had to fabricate a lot if we are to believe Dr.Neil Riordan and the ICM/SCI or the Reuters report (which, keep in mind, came out before this one.)
Sounds to me like they were definitely doing something with embryonic stem cells. Maybe back door? Maybe experimenting? Unless this publication lied and the Institute's former advisory board member didn't know what he was talking about. I guess it comes down to a matter of who to believe. Oh well. Useless speculation... we'll have to wait to hear more, it seems.
slayadragon
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I wouldn't expect to get to the point where I'm like the 75% of the population that can eat Stachyflakes for breakfast without being affected by it. That's way too much to hope for!
(The idea that 25% of the population is "abnormal" seems a little odd to me anyway. What kind of definition of "normal" is that?)
I just would like to get to the point where I can live in average buildings, be around items that have been in really moldy buildings, and visit cities without being knocked down by the outside air.
That doesn't seem too much to ask for.
Ditto Lyme. If I'm this reactive to mold toxin and other external biotoxins, it seems likely that I'm hyperreactive to Lyme toxin too.
It thus makes sense that I'd be negatively affected by whatever amount of Lyme is present in my system, even if it's not enough to come up on any conventional tests.
So my hope would be that I could get my system to the point where I'm not affected by the normal amount of Lyme that is present in "latent" form in a high percentage of the population's systems, rather than having to get rid of every last spirochete and cyst.
Lisa
Dipic, about all you can do is call the Panama clinic on Monday. You're scheduled for treatment there, right? So you have a right to get answers to your questions.
Just my opinion, but you've already made the (brave) decison to go, you're young, you believe this to be the best current treatment for potential cure, so as long as Panama is still operating, I'd go and get the cord blood treatment you are scheduled for. This treatment just makes so much sense to me - I've said it already, resetting the system seems like the only real answer. Otherwise you're chasing symptoms and the body is so complex, who knows if you're getting to the solution or if you're doing more harm? Again, just my 2 cents.
Above all, good luck! I really hope you get better soon.
Just my opinion, but you've already made the (brave) decison to go, you're young, you believe this to be the best current treatment for potential cure, so as long as Panama is still operating, I'd go and get the cord blood treatment you are scheduled for. This treatment just makes so much sense to me - I've said it already, resetting the system seems like the only real answer. Otherwise you're chasing symptoms and the body is so complex, who knows if you're getting to the solution or if you're doing more harm? Again, just my 2 cents.
Above all, good luck! I really hope you get better soon.
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TCMNET and Tico Times article are wrong!
I just read the article on tmcnet
it appears to me like TCMnet just posted this article from the Tico Times which was wrong and has been corrected by now.
I come to this conclusion because in the first line of the tmcnet article it says: "Jun 04, 2010 (The Tico Times - McClatchy-Tribune Information Services via COMTEX)".
When I read the article in the Tico Times, I noticed that they are now writing about adult stem cells instead of embryonic stem cells. At the bottom of the Tico Times article about stem cells it states now: "This story is updated from it's original version."
I think this mistake could happen only to somebody who does not know a thing about stem cells.
At first I was shocked, when I read, that the Costa Rica stem cell clinics are closing. Now it seems to me like this might not be the end of our stem cell treatment group that will be going to costa Rica at a reduced rate.
I spend much of the last week putting research into this. I was not able to find anything wrong with the statements that have been made by the Panama/costa rica clinics about their treatment protocol. I already talked to Dr. Tribaldos in Panama and she was able to anwer some of my questions, but not all of them. When it comes to questions about the exact procedure that they are using: (for example: How do you know that none of the graft stem cells will be left in the body after 6 month? or How do you know the expanded stem cells will not keep expanding in the body.) To those questions I heard the answer that they know it because they are doing research on it. They also refer to their record of 800 treated patients with this protocol in the last 5 years.
When I asked for medical papers that prove this research I did not get sufficient information. The only medical paper that I received from them to prove their science was the following, which I already read and posted about on this board.
http://www.cellmedicine.com/doc/CordBloodinRegenerativeMedicine.pdf
It appears to me that we have to trust the experience of the clinics in Panama/Costa Rica with this protocol. I would only get treatment there, if I trusted them.
Why would I trust them? Because my Physician is in close correspondence with Dr. Cheney and told me the treatment had a minimal risk. I think my Dr. trusts the clinics in Costa Rica because Dr. Cheney trusts them. I think Dr. Cheney trusts the clinics because he inspected them closely and was impressed with the good care that they where taking with their patients. I also assume, that Dr. Cheney looked into the adult stem cell research and came to the conclusion that the treatment used in Costa Rica/ Panama is associated with very little risk.
I will be looking forward to Dr. Cheneys follow up with his patients this summer. I think it would be good, if the group of patients who wants to go to Costa Rica now at the $10 000 rate, will wait until that report has been published. I think after the hopefully interesting report by Dr. Cheney has been published, we will be able to make a good decision.
Hope this makes sense. If it does not, I will do my best to clarify once I got my brain recovered from this long post.
I just read the article on tmcnet
it appears to me like TCMnet just posted this article from the Tico Times which was wrong and has been corrected by now.
I come to this conclusion because in the first line of the tmcnet article it says: "Jun 04, 2010 (The Tico Times - McClatchy-Tribune Information Services via COMTEX)".
When I read the article in the Tico Times, I noticed that they are now writing about adult stem cells instead of embryonic stem cells. At the bottom of the Tico Times article about stem cells it states now: "This story is updated from it's original version."
I think this mistake could happen only to somebody who does not know a thing about stem cells.
At first I was shocked, when I read, that the Costa Rica stem cell clinics are closing. Now it seems to me like this might not be the end of our stem cell treatment group that will be going to costa Rica at a reduced rate.
I spend much of the last week putting research into this. I was not able to find anything wrong with the statements that have been made by the Panama/costa rica clinics about their treatment protocol. I already talked to Dr. Tribaldos in Panama and she was able to anwer some of my questions, but not all of them. When it comes to questions about the exact procedure that they are using: (for example: How do you know that none of the graft stem cells will be left in the body after 6 month? or How do you know the expanded stem cells will not keep expanding in the body.) To those questions I heard the answer that they know it because they are doing research on it. They also refer to their record of 800 treated patients with this protocol in the last 5 years.
When I asked for medical papers that prove this research I did not get sufficient information. The only medical paper that I received from them to prove their science was the following, which I already read and posted about on this board.
http://www.cellmedicine.com/doc/CordBloodinRegenerativeMedicine.pdf
It appears to me that we have to trust the experience of the clinics in Panama/Costa Rica with this protocol. I would only get treatment there, if I trusted them.
Why would I trust them? Because my Physician is in close correspondence with Dr. Cheney and told me the treatment had a minimal risk. I think my Dr. trusts the clinics in Costa Rica because Dr. Cheney trusts them. I think Dr. Cheney trusts the clinics because he inspected them closely and was impressed with the good care that they where taking with their patients. I also assume, that Dr. Cheney looked into the adult stem cell research and came to the conclusion that the treatment used in Costa Rica/ Panama is associated with very little risk.
I will be looking forward to Dr. Cheneys follow up with his patients this summer. I think it would be good, if the group of patients who wants to go to Costa Rica now at the $10 000 rate, will wait until that report has been published. I think after the hopefully interesting report by Dr. Cheney has been published, we will be able to make a good decision.
Hope this makes sense. If it does not, I will do my best to clarify once I got my brain recovered from this long post.
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Is Dr. Cheney trustworthy?
Because I suggest relying on Dr. Cheneys opinion about the credibility of the Costa Rica Panama Clinics and relying on his report to estimate treatment effect and risks I would like to seriously ask the following question:
Is Dr. Cheney trustworthy?
Because I suggest relying on Dr. Cheneys opinion about the credibility of the Costa Rica Panama Clinics and relying on his report to estimate treatment effect and risks I would like to seriously ask the following question:
Is Dr. Cheney trustworthy?
Thanks David, for putting that question out there. I think, (well, I know, because I've discussed it with others offline), that many of us wonder the same thing.
I think there is no question that the man has dedicated his practice to trying to help those with CFS and he should be thanked for this. Have people gotten better from his treatments? I don't really know because there doesn't seem to be any of his patients on public forums discussing their experiences. I think this is a shame and a real waste of a valuable resource. Perhaps he feels that since he has done the hard work/research he needs to protect it. Probably a fair attitude, but frustrating to those of us in dire need of help, but without the extra thousands required to see him first, (not to mention the extra travel, etc.). If I had the exttra thousands I would see him first, but I don't.
Then there is the issue of his Cell Signalling Factors. This seems a bit far-fetched to me and is it necessary for stem cell therapy to be successful? According to Molly's experience, she had the treatment without CSF's and seems to have gotten great improvement, (and possibly a better response because she doesn't report the hypersomnolence that Dr. Cheney's patients all get). But who knows? This is all VERY new.
My gut feel, (and this is just my opinion), is that Dr. Cheney's heart is in the right place and he, like a lot of us, see stem cell treatment as the only current viable treatment for all the multi-faceted dysfunction going on with CFS, that can offer significant help, or even a cure. The theory of re-setting the immune system is a good one. I also think that he's not opposed to making significant amounts of money at his work. Is this a bad thing? That's a personal philosophy call. He has studied to be both an MD and PHD and researches long and hard to fight this disease - that doesn't come free.
He does have some far out theories though. For example, he states that Vit. D3 is bad for CFS. Every medical organization in North America is touting its benefits as a cancer and MS preventative. But maybe it IS bad if yo have CFS. I still take it. Again, who knows. In the end, it's encumbent on all of us to make informed choices, (which I guess is why we're here), and to realize that any doctor is only one person, with their own opinions, mindsets and human fragility. They are not gods, nor are they infallible. I went to Dr. Lerner for a year and got no relief, but others have walked out of his office cured, (I like Dr. Lerner, btw, and hold no ill feelings - my problem is not viral and he couldn't help, that's all).
In the end, I don't think there's a definitive answer to the question, just opinion. If anyone knows anyone who has been or is a patient of Dr. Cheney's please weigh in with their experiences - second hand info. would be better than none at this point.
I think there is no question that the man has dedicated his practice to trying to help those with CFS and he should be thanked for this. Have people gotten better from his treatments? I don't really know because there doesn't seem to be any of his patients on public forums discussing their experiences. I think this is a shame and a real waste of a valuable resource. Perhaps he feels that since he has done the hard work/research he needs to protect it. Probably a fair attitude, but frustrating to those of us in dire need of help, but without the extra thousands required to see him first, (not to mention the extra travel, etc.). If I had the exttra thousands I would see him first, but I don't.
Then there is the issue of his Cell Signalling Factors. This seems a bit far-fetched to me and is it necessary for stem cell therapy to be successful? According to Molly's experience, she had the treatment without CSF's and seems to have gotten great improvement, (and possibly a better response because she doesn't report the hypersomnolence that Dr. Cheney's patients all get). But who knows? This is all VERY new.
My gut feel, (and this is just my opinion), is that Dr. Cheney's heart is in the right place and he, like a lot of us, see stem cell treatment as the only current viable treatment for all the multi-faceted dysfunction going on with CFS, that can offer significant help, or even a cure. The theory of re-setting the immune system is a good one. I also think that he's not opposed to making significant amounts of money at his work. Is this a bad thing? That's a personal philosophy call. He has studied to be both an MD and PHD and researches long and hard to fight this disease - that doesn't come free.
He does have some far out theories though. For example, he states that Vit. D3 is bad for CFS. Every medical organization in North America is touting its benefits as a cancer and MS preventative. But maybe it IS bad if yo have CFS. I still take it. Again, who knows. In the end, it's encumbent on all of us to make informed choices, (which I guess is why we're here), and to realize that any doctor is only one person, with their own opinions, mindsets and human fragility. They are not gods, nor are they infallible. I went to Dr. Lerner for a year and got no relief, but others have walked out of his office cured, (I like Dr. Lerner, btw, and hold no ill feelings - my problem is not viral and he couldn't help, that's all).
In the end, I don't think there's a definitive answer to the question, just opinion. If anyone knows anyone who has been or is a patient of Dr. Cheney's please weigh in with their experiences - second hand info. would be better than none at this point.
Hi dipic,
The fact that you now know you are XMRV+ is not just a "little tidbit"--it is HUGE news. For one thing, this gives me hope that in the end, you are going to be okay.
Please, please take the XMRV survey, because it's really important for patients themselves to report the symptoms of XMRV. When CFS was first defined, a government organization chose the symptoms they wanted to include--and their choices were not necessarily the symptoms the patients thought were important. With this survey, we have a chance to make sure that patients' voices are heard, perhaps at the very beginning of a new disease.
Also, you are severely ill, and your contribution to the survey will help us impress upon the world that people with XMRV can be severely ill and disabled, and that governments should invest in research.
A survey committee member, Julius, sent me his notes on some of the results so far, and I'll PM them to you as soon as I get a chance.
It's only 20 days until you go to Panama, and I will be thinking of you (and worrying about you). You have done such a careful job of planning that surely you will make the trip safely and will benefit greatly.
I certainly agree with the way you ended your post: "Keep the hope alive."
Advocate
L
lemonlyme
Guest
Hi Everyone,
I am new to this site, I was brought here as I am a member of lymenet and there was info about stem cell therapy from m0joey. It sounds very interesting to me, especially after reading about the long expensive medical treatments, that are hard to endure and expensive. I have CFS and Fibromyalgia and got tired of running from doctor to doctor since 2007 and not getting nowhere. I have had a past blood test years ago from an infectious disease doctor -in the early 90's. He said my tests show that at one time I had EBV and CMV but that the titers only showed a past infection- at the time I went I was really sick. Not to post a history but I started treating myself as I was told I'd have to just accept this cfs/fibo. I studied alot treated myself got well in two years. Then in 2007 started not feeling well again and now I can't do much at all.
I just went to a doc had blood drawn for lyme and co infections, viral panel, W- Blot and an enzyme test to see how much Vit I can handle for IV's. My tests will come back first week of july.
So I was very excited to read about the stem cell therapy and very upset that the costa rica clinic would be closing. Of course my next thought was - I hope Panama is not next. I am interested in the therapy.
But now it seems from the previous post that the costa rica clinic is still open and doing adult stem cell therapy and not the embryonic am I correct? It's hard sometimes for me to clarify what I read.
I hope I have this correct- we all need the possibilities and the chance to get well. I did PM Molly- I know she is busy getting ready to go.
I just want to say that the Big Machine wants people sick- that's why hearing that the Costa Rico clinic closed really upset me.
Could someone tell me if I am understanding this correctly? And does someone know when the next group will be going? My doctors father also a doctor who had lyme and is going for stem cell therapy next week- I don't know where he is going. But I will ask at my next appointment.
I am new to this site, I was brought here as I am a member of lymenet and there was info about stem cell therapy from m0joey. It sounds very interesting to me, especially after reading about the long expensive medical treatments, that are hard to endure and expensive. I have CFS and Fibromyalgia and got tired of running from doctor to doctor since 2007 and not getting nowhere. I have had a past blood test years ago from an infectious disease doctor -in the early 90's. He said my tests show that at one time I had EBV and CMV but that the titers only showed a past infection- at the time I went I was really sick. Not to post a history but I started treating myself as I was told I'd have to just accept this cfs/fibo. I studied alot treated myself got well in two years. Then in 2007 started not feeling well again and now I can't do much at all.
I just went to a doc had blood drawn for lyme and co infections, viral panel, W- Blot and an enzyme test to see how much Vit I can handle for IV's. My tests will come back first week of july.
So I was very excited to read about the stem cell therapy and very upset that the costa rica clinic would be closing. Of course my next thought was - I hope Panama is not next. I am interested in the therapy.
But now it seems from the previous post that the costa rica clinic is still open and doing adult stem cell therapy and not the embryonic am I correct? It's hard sometimes for me to clarify what I read.
I hope I have this correct- we all need the possibilities and the chance to get well. I did PM Molly- I know she is busy getting ready to go.
I just want to say that the Big Machine wants people sick- that's why hearing that the Costa Rico clinic closed really upset me.
Could someone tell me if I am understanding this correctly? And does someone know when the next group will be going? My doctors father also a doctor who had lyme and is going for stem cell therapy next week- I don't know where he is going. But I will ask at my next appointment.
dipic
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Hi guys. I made a promise to my old man and more importantly to myself that I would pull away and "disconnect" from anything that isn't essential to getting rest or preparing (which I guess includes the former) for my trip (only 20 days away now.) Impossible to do completely, but I have to try. I love the discussions on here, I love being connected, I like to know what is going on in the world around me, especially when it relates to my illness. It's an addiction and I crave it (which is why you've continued to see me post despite saying I wouldn't about 6 pages ago 
) but like any addiction, it's unhealthy, especially at a time like this.
That said, I want to answer these last couple posts before I (hopefully really this time) stop.
As such, I am waiting for the paper to be published so I can find out the rest of the details myself after which I will fill out your survey as soon as I can.
And everyone else. This may not be my last correspondence on this forum before I embark on my trip on the 26th but it will certainly be the most involved or demanding, assuming I can keep my promise.
Ben
) but like any addiction, it's unhealthy, especially at a time like this.That said, I want to answer these last couple posts before I (hopefully really this time) stop.
I will be going with just my Dad. I hope some others in this thread will be able to answer your first question.
I agree. I'm happy I tested positive, or about as happy as one could be about something like that. I'm young, I haven't been sick too long (although I suspect I've had the virus perhaps since early childhood), and of course it's good to know what you're up against.
I absolutely will. I would have already, however I have not received the full details of my diagnosis. Simply put, I participated in a study that has yet to be published but discovered my results beforehand. I simply know my results and nothing more (i.e. the exact methods used to find them, though I can assure you they were the best.)
As such, I am waiting for the paper to be published so I can find out the rest of the details myself after which I will fill out your survey as soon as I can.
I would appreciate that, thank you.
Thank you, Advocate.
And everyone else. This may not be my last correspondence on this forum before I embark on my trip on the 26th but it will certainly be the most involved or demanding, assuming I can keep my promise.^
Ben
mojoey
Senior Member
- Messages
- 1,213
Hey lemonlyme,
Good to see you here. I don't think any of us have any exact answers on the CR story yet. I have heard a few different versions from people intimately involved both the clinic, and none of them are palatable to say the least.
However, I have reason to believe that Panama will be fine for the foreseeable future and the CR closing does not affect the Panama clinic's operations.
As of right now, even group #1 does not have a set date, so group #2 I imagine is far off (if there will be a group #2--this isn't a certainty but I certainly hope it'll happen along with #3, 4, and so forth)
Molly is a bit busy at the moment, but she'll get back to you. Many people have been contacting her lately... I put a lot on her plate by posting over at lymenet
best,
j
Good to see you here. I don't think any of us have any exact answers on the CR story yet. I have heard a few different versions from people intimately involved both the clinic, and none of them are palatable to say the least.
However, I have reason to believe that Panama will be fine for the foreseeable future and the CR closing does not affect the Panama clinic's operations.
As of right now, even group #1 does not have a set date, so group #2 I imagine is far off (if there will be a group #2--this isn't a certainty but I certainly hope it'll happen along with #3, 4, and so forth)
Molly is a bit busy at the moment, but she'll get back to you. Many people have been contacting her lately... I put a lot on her plate by posting over at lymenet
best,
j
- Messages
- 25
Lyme needs to be treated before getting stem cell treatment.
My Doctor said, that in patients with Lyme disease the Lyme infection should be treated with antibiotics before going for stem cell treatment.
Also Dr. Tribaldos from the clinic in Panama told me that stem cell treatment is probably no treatment for lyme infection. She said they have treated one patient with Lyme. The patient felt a little better, but the infection did not improve.
My Doctor said, that in patients with Lyme disease the Lyme infection should be treated with antibiotics before going for stem cell treatment.
Also Dr. Tribaldos from the clinic in Panama told me that stem cell treatment is probably no treatment for lyme infection. She said they have treated one patient with Lyme. The patient felt a little better, but the infection did not improve.
mojoey
Senior Member
- Messages
- 1,213
Hey Mr.Kite,
Amy (healthcarehacks I assume is the blog you're referring to) did take antibiotics before she went to India. Also, many of my close lyme friends actually met Amy before she went to India because she was seeing the most prominent LLMD in CA, the same LLMD that I saw for a good 6 months before I realized antibiotics wouldn't take me anywhere but down. I've also spoken with her several times, and from her symptoms it does seem like she was more of a classic chronic lyme patient than CFS. So no, although I haven't met her in person before/after SC, I have reason to believe that yes she is real.
However, I can't say the same for the second lyme patient that went to India and blogged about feeling regaining her ability to walk, Monica. I met her in person when we were both getting biophoton treatment in Germany. She was still in a wheelchair at the time.
I'm trying to get more feedback from patients seeing Dr. Gordon and his associates. Not that I suspect what David is saying is untrue, but it would just be good to get multiple "definite" statements from GMA to ensure that that is, in fact, his definitive statement.
David--Thanks for the statement from Dr. Tribaldos. I do have to point out that there seem to be some inconsistencies in her statements. I assume it was she that said that they've only been following CFS patients for a year, but the medical director of the clinic said that they did SC on 9 CFS patients even before Cheney sent a single one down there, and Cheney is coming close to the 12-18 month mark. Also, I think if Dr. Tribaldos truly understood CFS via working with Cheney, she would know that lyme has been detected in many CFS patients, especially Cheney patients. Please recall Cheney's public article below:
It may not be that far-fetched to extrapolate that some of the patients that he sent down to Panama did test positive for lyme, but I hope we'll find out when he releases his results (although I highly doubt he'll release all of his data, only the data most relevant to the point he's trying to prove.)
The fact is: we simply don't know whether stem cells can eradicate infections. Although XMRV tested negative for previously pos patients, testing is still in infancy and negative culture does not mean negative infection. Quite possibly, the load was lowered by regaining immunity. I think the wisest course of action is to try to lower infections in some way possible before going to err on the side of caution. I also think it's safe to say most lyme patients HAVE done antibiotics, some very long-term. CFS patients have done antivirals, some antibiotics for lyme and co-infections, and possibly immune modulators. I think all of these are wise courses of action to take both before and after stem cells (although you don't wanna take anything after stem cells that have been clinically shown to reduce your WBC such as ABx and some AVs--immune modulators seem like they'd be a good shot in the arm both pre- and post- stem cells, and antivirals pre-.)
Amy (healthcarehacks I assume is the blog you're referring to) did take antibiotics before she went to India. Also, many of my close lyme friends actually met Amy before she went to India because she was seeing the most prominent LLMD in CA, the same LLMD that I saw for a good 6 months before I realized antibiotics wouldn't take me anywhere but down. I've also spoken with her several times, and from her symptoms it does seem like she was more of a classic chronic lyme patient than CFS. So no, although I haven't met her in person before/after SC, I have reason to believe that yes she is real.
However, I can't say the same for the second lyme patient that went to India and blogged about feeling regaining her ability to walk, Monica. I met her in person when we were both getting biophoton treatment in Germany. She was still in a wheelchair at the time.
I'm trying to get more feedback from patients seeing Dr. Gordon and his associates. Not that I suspect what David is saying is untrue, but it would just be good to get multiple "definite" statements from GMA to ensure that that is, in fact, his definitive statement.
David--Thanks for the statement from Dr. Tribaldos. I do have to point out that there seem to be some inconsistencies in her statements. I assume it was she that said that they've only been following CFS patients for a year, but the medical director of the clinic said that they did SC on 9 CFS patients even before Cheney sent a single one down there, and Cheney is coming close to the 12-18 month mark. Also, I think if Dr. Tribaldos truly understood CFS via working with Cheney, she would know that lyme has been detected in many CFS patients, especially Cheney patients. Please recall Cheney's public article below:
It may not be that far-fetched to extrapolate that some of the patients that he sent down to Panama did test positive for lyme, but I hope we'll find out when he releases his results (although I highly doubt he'll release all of his data, only the data most relevant to the point he's trying to prove.)
The fact is: we simply don't know whether stem cells can eradicate infections. Although XMRV tested negative for previously pos patients, testing is still in infancy and negative culture does not mean negative infection. Quite possibly, the load was lowered by regaining immunity. I think the wisest course of action is to try to lower infections in some way possible before going to err on the side of caution. I also think it's safe to say most lyme patients HAVE done antibiotics, some very long-term. CFS patients have done antivirals, some antibiotics for lyme and co-infections, and possibly immune modulators. I think all of these are wise courses of action to take both before and after stem cells (although you don't wanna take anything after stem cells that have been clinically shown to reduce your WBC such as ABx and some AVs--immune modulators seem like they'd be a good shot in the arm both pre- and post- stem cells, and antivirals pre-.)
dipic
Senior Member
- Messages
- 215
Update from Reuters on CR clinic closing
FEATURE - Costa Rica puts brakes on popular stem cell tourism
- Mon Jun 7, 2010 8:12am IST
http://in.reuters.com/article/idINIndia-49088520100607
(Oh by the way, read the first comment article as well for someone's assessment of Stem-Kine... interesting stuff. Okay, I'm out...)
FEATURE - Costa Rica puts brakes on popular stem cell tourism
- Mon Jun 7, 2010 8:12am IST
http://in.reuters.com/article/idINIndia-49088520100607
(Oh by the way, read the first comment article as well for someone's assessment of Stem-Kine... interesting stuff. Okay, I'm out...
)