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Stem Cells

Rrrr

Senior Member
Messages
1,591
taxdoc,

thanks so much for writing about your experience. we hope you will keep us posted, as there are many of us who are eager to try the stem cell treatment in panama, and we'll benefit so much from hearing from the pioneers like you who went ahead of us.

can you tell us:
- this full time job you mentioned that you were able to hold down, was that new for you? in other words, before the stem cells, had you been able to work full or part time?
- and how are you now, 1 year after you first stem cell treatment? are you still working full time (tho relapsing on the weekends, it sounds like...)
- can we infer from your post that you were xmrv positive before the first stem cell treatment? but maybe not, as i don't think the xmrv test was even available at that time (May 2009). did you get rested or re-tested (re: xmrv) *after* the first stem cell treatment? do you feel comfortable telling us the results?

warmly,
rrrr
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi,

I talked to my friend yesterday--she is the Cheney patient who has gone to Panama 3 times for infusions. She said that the infusion into the spinal cord gave remarkable cognitive benefits and that she really felt she had her brain back. But, it didn't last, and now several months later, while she is definitely more functional than pre-treatment, she has lost some of her gains--both stamina wise and cognitively.

She promised to tell me what the before and after tests are but she couldn't remember them when we talked. She can only speculate as to what is happening, but since she was XMRV postitive (testing done by WPI after her first infusion), the possibility that XMRV is infecting the new cells does occur to her.

Note: She is over 50, and has been very sick for many years. So she is in a patient category that Cheney finds to be less responsive.

Best wishes to those who are going down to Panama soon. Even my friend, who hasn't improved as much as some, is functionally much better and Cheney finds that her tests have improved too.

Sushi
 

Rrrr

Senior Member
Messages
1,591
please thank your friend, sushi, for giving us this info. really appreciated!! tell her we wish her the best as she "takes in" the stem cell treatment. does she plan to do a 4th treatment? and was she re-tested after the 3rd treatment to see about her xmrv status?
 

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Summary of SF Stem Cell event 6/15/10 - INCLUDING ACTION ITEMS

Hello all,
I would like to post a quick review of the California Institue for Regenerative Medicine (CIRM) and The International Society for Stem Cell Research (ISSCR)that took place in San Francisco 6/15. I was in attendance along with David Herre and @Rrrr's mother. My take aways are as follows:

1) There is great concern over "Stem Cell Tourism" therefore these two bodies are creating an independent resource/database for patients. This includes a service offered by CIRM to investigate clinics. http://www.closerlookatstemcells.org/Submit_a_Clinic.htm It takes a few months (4-5), however I am submitting the Panama Clinic just to see what it comes back with. They also have great resources, like the top 10 things to look for when finding a stem cell clinic and a patient handbook http://www.isscr.org/clinical_trans/pdfs/ISSCRPatientHandbook.pdf

2) Dr. Jeanne F. Loring of The Scripps Research Institute is so passionate about making sure people are not being taken advantage of, she point blank offered to test a sem cell tsample from any clinic, free of charge. Her concern is that people don't know what they're being injected with, and no with what they're first told. I think it would be fantastic to get a sample from the Panama clinic. Is there anyone willing to help with this?

3) We talked with Dr. Douglas Sipp of the Riken Center for Developmental Biology after the event, explaining our interest in CFS treatment at The Stem Cell Institute in Panama City. We asked how to get this clinic on the radar with these stem cell organizations, as well as mentioning Dr. Cheney's involvement. He had a very straighforward answer. Peer reviewed research. I'm assuming Dr. Cheney is collecting data to do that right now with his patients. He also suggested if we have a group of 20-30 patients going, ideally we should try to collect a set of uniform CFS markers/variables/tests prior to treatment, then at specific milestones after treatment. We'd need a doctor willing to "oversee" and then if there are successes or learnings, they could publish findings based on these uniformly collected variables. What do you all think about this idea?

Re #1 - I'm submitting and will post once there is a response
Re #2 - Anyone willing to help collect a sample? Either a patient who's going soon, or signed up to go with the group?
Re #3 - Is there interest in pursuing the collection of data on everyone going pre & post stem cells?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
please thank your friend, sushi, for giving us this info. really appreciated!! tell her we wish her the best as she "takes in" the stem cell treatment. does she plan to do a 4th treatment? and was she re-tested after the 3rd treatment to see about her xmrv status?

She can't remember when she was tested, except that it had to be after her first two trips to Panama because they were before Oct 9th. She is considering getting a second infusion into the spinal cord. Right now she is watching and waiting.

Sushi
 

Rrrr

Senior Member
Messages
1,591
Hello all,
I would like to post a quick review of the California Institue for Regenerative Medicine (CIRM) and The International Society for Stem Cell Research (ISSCR)that took place in San Francisco 6/15. I was in attendance along with @David Herre and @Rrrr's mother. My take aways are as follows:

1) There is great concern over "Stem Cell Tourism" therefore these two bodies are creating an independent resource/database for patients. This includes a service offered by CIRM to investigate clinics. http://www.closerlookatstemcells.org/Submit_a_Clinic.htm It takes a few months (4-5), however I am submitting the Panama Clinic just to see what it comes back with. They also have great resources, like the top 10 things to look for when finding a stem cell clinic and a patient handbook http://www.isscr.org/clinical_trans/pdfs/ISSCRPatientHandbook.pdf

2) Dr. Jeanne F. Loring of The Scripps Research Institute is so passionate about making sure people are not being taken advantage of, she point blank offered to test a sem cell tsample from any clinic, free of charge. Her concern is that people don't know what they're being injected with, and no with what they're first told. I think it would be fantastic to get a sample from the Panama clinic. Is there anyone willing to help with this?

3) We talked with Dr. Douglas Sipp of the Riken Center for Developmental Biology after the event, explaining our interest in CFS treatment at The Stem Cell Institute in Panama City. We asked how to get this clinic on the radar with these stem cell organizations, as well as mentioning Dr. Cheney's involvement. He had a very straighforward answer. Peer reviewed research. I'm assuming Dr. Cheney is collecting data to do that right now with his patients. He also suggested if we have a group of 20-30 patients going, ideally we should try to collect a set of uniform CFS markers/variables/tests prior to treatment, then at specific milestones after treatment. We'd need a doctor willing to "oversee" and then if there are successes or learnings, they could publish findings based on these uniformly collected variables. What do you all think about this idea?

Re #1 - I'm submitting and will post once there is a response
Re #2 - Anyone willing to help collect a sample? Either a patient who's going soon, or signed up to go with the group?
Re #3 - Is there interest in pursuing the collection of data on everyone going pre & post stem cells?

ann

thanks for this great summary of the talk. the question a friend of mine had was this: if Dr. Loring of the Scripps Research Institute investigates a clinic we ask her to investigage and/or if she tests a stem cell sample from a clinic (free of charge, as you pointed out) and they find that the clinic is lacking or the actual stem cell sample is lacking in some way, do they have the authority, or can they initiate a process that will result in the stem cell clinic being shut down? did Dr Loring mention that? The concern is this: what if the treatments ARE helping the CFS patients, but the stem cell clinic or the clinic's stem cell samples are not considered good quality by the Scripps Institute's standards? will this end our access to that source of stem cells?

warmly,
rrrr
 
Messages
23
ann

thanks for this great summary of the talk. the question a friend of mine had was this: if Dr. Loring of the Scripps Research Institute investigates a clinic we ask her to investigage and/or if she tests a stem cell sample from a clinic (free of charge, as you pointed out) and they find that the clinic is lacking or the actual stem cell sample is lacking in some way, do they have the authority, or can they initiate a process that will result in the stem cell clinic being shut down? did Dr Loring mention that? The concern is this: what if the treatments ARE helping the CFS patients, but the stem cell clinic or the clinic's stem cell samples are not considered good quality by the Scripps Institute's standards? will this end our access to that source of stem cells?

warmly,
rrrr

Not a chance, especially given that the clinic operates outside the US. The worst they could do is expose the clinic's lack of quality to the public. I suppose they could alert the Panamanian governement, but I highly doubt that would do anything. Not for many many years anyway.
 

mojoey

Senior Member
Messages
1,213
My question is if she were really so interested in testing the validity of the stem cells, why would she ask us to get a sample? She's a researcher with clout to speak with the production team at panama herself and organize a collaborative effort; we're patients with no authority to handle specimen samples and insufficient knowledge to minimize contamination during transport. I assume she probably knows all this, so the fact that she would ask us patients to obtain samples for her to judge the legitimacy of an entire clinic raises a few questions.
 

Rrrr

Senior Member
Messages
1,591
Not a chance, especially given that the clinic operates outside the US. The worst they could do is expose the clinic's lack of quality to the public. I suppose they could alert the Panamanian governement, but I highly doubt that would do anything. Not for many many years anyway.

what if it is a USA source for stem cells?
 

Rrrr

Senior Member
Messages
1,591
i wonder about each person getting the "Methylation Panel" blood test done at Vitamin Diagnostics lab before they embark on the stem cell treatment...? unfortunately, it cost $300, but this could be a good gauge for "before and after" -- i.e. if the stem cell treatments actually help the body on a biochemical level.

i'll post below something that rich van k posted elsewhere:

June 21 2010

Hi, all.

So far, I think that nearly everyone with ME/CFS who has taken the methylation pathways panel offered by Health Diagnostics and Research Institute (formerly Vitamin Diagnostics, Inc.) in New Jersey has been found to have abnormalities on this panel. The Glutathione Depletion--Methylation Cycle Block hypothesis for the pathogenesis of ME/CFS predicts that this would be the case. This hypothesis would be consistent with XMRV involvement, either in contributing to causation of at least some cases of ME/CFS or as an acquired passenger, benefiting from immune dysfunction resulting from glutathione depletion as a result of other initial causes.

I think there is a good chance that this panel could serve as the biomarker panel for diagnosis of ME/CFS, as well as the gauge of progress in treatment. A clinical treatment study that I think supports this possibility can be found at www.cfsresearch.org

I have no financial interest in this lab or this panel.

For others who might be interested in getting this panel, here's the contact information:



Methylation Pathways Panel

This panel will indicate whether a person has a partial methylation cycle block, draining of folate metabolites from the cells, and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block.

The panel requires an order from a physician or a chiropractor. It costs $300 plus the cost of shipping the blood samples to the lab. The best way to order the panel is by fax, on a clinician’s letterhead.


Available from:

Health Diagnostics and Research Institute
540 Bordentown Avenue, Suite 4930
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., at the lab is willing to help clinicians with interpretation of the panel by phone, or you can use the interpretive comments below:

Interpretation of the Vitamin Diagnostics
Methylation Pathways Panel

by
Rich Van Konynenburg, Ph.D.


Several people have asked for help in interpreting the results of
their Health Diagnostics and Research Institute methylation pathway panels. Here are my
suggestions for doing so. They are based on my study of the
biochemistry involved, on my own experience with interpreting more
than 120 of these panel results to date, and on discussion of some of
the issues with Tapan Audhya, Ph.D. of the
Health Diagnostics and Research Institute.

The panel consists of measurement of two forms of glutathione
(reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
adenosylhomocysteine (SAH), and seven folic acid derivatives or
vitamers.

According to Dr. Audhya, the reference ranges for each of these
metabolites was derived from measurements on at least 120 healthy
male and female volunteer medical students from ages 20 to 40, non-
smoking, and with no known chronic diseases. The reference ranges
extend to plus and minus two standard deviations from the mean of
these measurements.

Glutathione: This is a measurement of the concentration of the
reduced (active) form of glutathione (abbreviated GSH) in the blood
plasma. From what I've seen, most people with chronic fatigue
syndrome (PWCs) have values below the reference range. This means
that they are suffering from glutathione depletion. As they undergo
the simplified treatment approach to lift the methylation cycle
block, this value usually rises into the normal range over a period
of months. I believe that this is very important, because if
glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
that build up in the absence of sufficient glutathione to take them
out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
convert to methylcobalamin, which is what the methylation cycle needs
in order to function normally. Also, many of the abnormalities and
symptoms in CFS can be traced to glutathione depletion.

Glutathione (oxidized): This is a measurement of the concentration
of the oxidized form of glutathione (abbreviated GSSG) in the blood
plasma. In many (but not all) PWCs, it is elevated above the normal
range, and this represents oxidative stress.

Adenosine: This is a measure of the concentration of adenosine in the
blood plasma. Adenosine is a product of the reaction that converts
SAH to homocysteine. In some PWCs it is high, in some it is low, and
in some it is in the reference range. I don't yet understand what
controls the adenosine level, and I suspect there is more than one
factor involved. In most PWCs who started with abnormal values, the
adenosine level appears to be moving into the reference range with
methylation cycle treatment, but more data are needed.

S-adenosymethionine (RBC) (SAM): This is a measure of the
concentration of SAM in the red blood cells. Most PWCs have values
below the reference range, and treatment raises the value. S-
adenosylmethionine is the main supplier of methyl groups in the body,
and many biochemical reactions depend on it for their methyl
groups. A low value for SAM represents low methylation capacity, and
in CFS, it appears to result from a partial block at the enzyme methionine
synthase. Many of the abnormalities in CFS can be tied to lack of
sufficient methyation capacity.

S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
concentration of SAH in the red blood cells. In CFS, its value
ranges from below the reference range, to within the reference range,
to above the reference range. Values appear to be converging toward
the reference range with treatment. SAH is the product of reactions
in which SAM donates methyl groups to other molecules.

Sum of SAM and SAH: When the sum of SAM and SAH is below 268
micromoles per deciliter, it appears to suggest the presence of
upregulating polymorphisms in the cystathione beta synthase (CBS)
enzyme, though this may not be true in every case.

Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
methylation capacity. Both the concentration of SAM and the ratio of
concentrations of SAM to SAH are important in determining the
methylation capacity.

5-CH3-THF: This is a measure of the concentration of 5-methyl
tetrahydrofolate in the blood plasma. It is normally the most
abundant form of folate in the blood plasma. It is the form that
serves as a reactant for the enzyme methionine synthase, and is thus
the most important form for the methylation cycle. Many PWCs have a
low value, consistent with a partial block in the methylation cycle.
The simplified treatment approach includes FolaPro, which is
commercially produced 5-CH3-THF, so that when this treatment is used,
this value rises in nearly every PWC. If the concentration of 5-CH3-
THF is within the reference range, but either SAM or the ratio of SAM
to SAH is below the reference values, it suggests that there is a
partial methylation cycle block and that it is caused by
unavailability of sufficient bioactive B12, rather than
unavailability of sufficient folate. I have seen this frequently,
and I think it demonstrates that the “hijacking” of B12 is the root
cause of most cases of partial methylation cycle block. Usually
glutathione is low in these cases, which is consistent with lack of
protection for B12, as well as with toxin buildup.

10-Formyl-THF: This is a measure of the concentration of 10-formyl
tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
This form of folate is involved in reactions to form purines, which
form part of RNA and DNA as well as ATP.

5-Formyl-THF: This is a measure of the concentration of 5-formyl
tetrahydrofolate (also called folinic acid) in the blood plasma.
Most but not all PWCs have a value on the low side. This form is not used
directly as a substrate in one-carbon transfer reactions, but it can
be converted into other forms of folate. It is one of the
supplements in the simplified treatment approach, which helps to
build up various other forms of folate.

THF: This is a measure of the concentration of tetrahydrofolate in
the blood plasma. In PWCs it is lower than the mean normal value of 3.7
nanomoles per liter in most but not all PWCs. This is the
fundamental chemically reduced form of folate from which several
other reduced folate forms are made. The supplement folic acid is
converted into THF by two sequential reactions catalyzed by
dihydrofolate reductase (DHFR). THF is also a product of the
reaction of the methionine synthase enzyme, and it is a reactant in
the reaction that converts formiminoglutamate (figlu) into
glutamate. If figlu is high in the Genova Diagnostics Metabolic
Analysis Profile, it indicates that THF is low.

Folic acid: This is a measure of the concentration of folic acid in
the blood plasma. Low values suggest folic acid deficiency in the
current diet. High values are sometimes associated with inability to
convert folic acid into other forms of folate, such as because of
polymorphisms in the DHFR enzyme. They may also be due to high
supplementation of folic acid.

Folinic acid (WB): This is a measure of the concentration of folinic
acid in the whole blood. See comments on 5-formyl-THF above. It
usually tracks with the plasma 5-formyl-THF concentration.

Folic acid (RBC): This is a measure of the concentration of folic
acid in the red blood cells. The red blood cells import folic acid
when they are initially being formed, but during most of their
approximately four-month life, they do not normally import, export, or use
it. They simply serve as reservoirs for it, giving it up when they
are broken down. Many PWCs have low values. This can be
caused by a low folic acid status in the diet over the previous few
months, since the population of RBCs at any time has ages ranging
from zero to about four months. However, in CFS it can also be
caused by damage to the cell membranes, which allows folic acid to
leak out of the cells. Dr. Audhya reports that treatment with omega-
3 fatty acids can raise this value over time.


Best regards

Rich
 
Messages
25
My question is if she were really so interested in testing the validity of the stem cells, why would she ask us to get a sample? She's a researcher with clout to speak with the production team at panama herself and organize a collaborative effort; we're patients with no authority to handle specimen samples and insufficient knowledge to minimize contamination during transport. I assume she probably knows all this, so the fact that she would ask us patients to obtain samples for her to judge the legitimacy of an entire clinic raises a few questions.

I think all Jeanne Loring would be able to tell us is, whether those cells are really CD34+ and mesenchymal stem cells derived from umbilical cord. I think Dr. Loring does not want to go the official way, because the stem cell clinic could just send her the right cells but give patients something else. I think ideally a patient would collect some of the cells that he gets infused. The patient could collect what is left in the IV line after infusion.

I think Dr. Loring must be able to tell what cell types they infuse despite possible contamination during shipping. I think she will not be able to say anything about the purity of the cells.
 

richvank

Senior Member
Messages
2,732
i wonder about each person getting the "Methylation Panel" blood test done at Vitamin Diagnostics lab before they embark on the stem cell treatment...? unfortunately, it cost $300, but this could be a good gauge for "before and after" -- i.e. if the stem cell treatments actually help the body on a biochemical level.

Hi, Rrrr.

I think it would be very interesting to see before and after methylation pathways panels from PWCs who receive stem cell treatment. I don't think anyone knows at this point exactly what all occurs in the body when a PWC receives this treatment. How does this treatment mesh with the partial methylation cycle block?

I've suggested to Dr. Cheney that perhaps one of the things that happens is that the stem cells come in with "fresh" mitochondria, and that in itself should give a PWC a boost, if the mitochondria in the existing cells are dysfunctional, as appears to be true from Dr. Howard's testing as well as lots of other types of data. He seemed to agree that that would be a good possibility for one effect of the stem cell treatment.

But does the stem cell treatment overcome the partial methylation cycle block, and if so, how? There is a lot that we still don't know about this. Getting before and after panels would be a step in the direction of figuring this out.

Best regards,

Rich
 
Messages
23
I'm also wary of these reports of the cheney patients showing either no results, or results only lasting for 6 months before some relapse.

I agree. What really bothers me is the fact that he seems to exaggerate the results in the articles from his website, and then puts a gag order on his patients from talking about it.

I would also be very interested to know about referral fees.
 

dipic

Senior Member
Messages
215
Re: "Referral fees."

As far as I know, Molly, nor anyone else gets any sort of compensation for referring people to the clinic. Unless, Mr.Kite, you know something that I do not, that is pure speculation on your part and you should describe it is such in your post rather than making implications that there is some sort of cynical based conspiratorial scheme playing out in the background. Personally, if I was Molly, I would be very insulted by that comment you made.

And now you have other people asking about "referral fees", which, again, Mr.Kite, unless you have some special insight that the rest of us don't have, is currently nothing more than figment of your imagination at this point as far as we know.

I don't mean to sound (or be) so aggressive or angry with you, Mr.Kite, especially considering what you are currently going through (for which I can deeply sympathize/empathize) but you are crossing the line between employing skeptical, rational thinking and reasoning to nearly making flat out accusations or implications of wrong doing when there is no evidence of any such thing. This will only serve to start rumors and possibly spread misinformation among people reading this thread and certainly put doubt in their minds (the latter of which is not necessarily and ordinarily a bad thing but not by or through the means to which I am referring and that you - intentional or otherwise - are using.)
 

jeffrez

Senior Member
Messages
1,112
Location
NY
As far as I know, Molly, nor anyone else gets any sort of compensation for referring people to the clinic. Unless, Mr.Kite, you know something that I do not, that is pure speculation your part and you should explain it is such rather than making implications that there is some sort of cynical based conspiratorial scheme playing out in the background. Personally, if I was Molly, I would be very insulted by that comment you made.

And now you have other people asking about "referral fees", which, again, Mr.Kite, unless you have some special insight that the rest of us don't have, is currently nothing more than figment of your imagination at this point as far as we know.

I don't mean to sound (or be) so aggressive or angry with you, Mr.Kite, especially considering what you are currently going through (for which I can deeply sympathize/empathize) but you are crossing the line between being skeptical, rational reasoning to almost pure accusations or implications of wrong doing when there is no evidence of any such thing. This will only start rumors and possibly spread misinformation among people reading this thread and certainly put doubt in their minds (the latter of which is not necessarily and ordinarily a bad thing but not by these means to which I'm referring.)

Just asking. It seems like a reasonable question. I would actually be surprised to find that Cheney or others were not getting some kind of compensation for referring people. If so, I don't see why it needs to be such a big secret. If it were me and I knew the owner and was going to all this effort to get people down there, I would for sure ask the guy for something for all my troubles!
 

Rockt

Senior Member
Messages
292
I have to agree with Mr. Kite. It's a reasonable question. Not that it makes any difference - we live in a free market society, people charge for their services, need money to live, many want to get rich - it's their business. I don't want them getting rich by misleading me or anyone else, but otherwise I don't care. If they feel they need a bigger car or boat that's their problem, (insecurity? - man, once you've been sick awhile all that other stuff seems SO unnecessary). I just want to get better and I want to make sure that what I'm spending my money on re treatment is worthwhile. Therefore, like most others here, I sure wish Dr. Cheney would be more forthcoming with information about the patients he has sent for stem cell therapy. I've said it before: I think there's merit to SC's - this re-setting the immune system very much appeals to me. But it's new and we are starving for information and not getting it.

Dipic, get some rest, man. You've got a lot ahead of you. I have a very good feeling about your success when you go to Panama - you're in the right age for max. benefit and you've got a good attitude, which, I think, is really important. Good luck!
 

dipic

Senior Member
Messages
215
Mr.Kite, rockt

It absolutely is a reasonable question to ask and it would have been fine (and I wouldn't have gone off on my little rant) if it were simply posed as a question; but it was not, a point that I raised but one which both of you seemed to either miss or ignore. :worried:

And again, I mean no offense, and I apologize if it seems like I'm lashing out... I've just been having an extremely stressful week, with today just topping it all off... at this point I am seriously considering delaying my trip because I am so wiped out and overwhelmed. Instead of resting the past couple weeks, my stress and anxiety level has only ramped up the closer I've gotten to leaving for this trip, mostly due to unavoidable and unfortunate circumstances (not to mention everything that has gone into and still needs to be finished for preparing for this trip... that is now just 2 and a half days away.)

I don't know...
 

Rrrr

Senior Member
Messages
1,591
RICH VAN K: do i have yr permission to post (repost, actully) that post you wrote on another forum (about methylation panel testing) on this forum? i have been informed that i need yr permission for this! thanks! -- rrrr
 

dsdmom

Senior Member
Messages
397
I'm not even sure that I should post this, but Klimas mentioned something to me about Cheney making $ off this as well - now I do not know if she KNOWS this or THINKS this. But it certainly struck me as interesting.