Info. on out of country options for CFS/ Stem/ Immuno

Discussion in 'Fibromyalgia Main Forum' started by dvdav2000, Dec 23, 2009.

  1. dvdav2000

    dvdav2000 New Member

    Hi All,
    The more I read , the more I see re: out of country "clinics" that treat the immune system... CFIDS, Ly m e, EBV, HHV6, Parvo, Myco Pneum., etc. stealth bacterials and virals. I feel it is all about stimulating the immune system... anyway...

    Anyone hear of any of these types of places. I found two in M e x ico. Are there any in India, China, etc. or in the U.S. but I see mostly all running for cover with the alt. or stem treatments.

    Any help appreciated.... all action will be reported on... ready to do this...NOW... Chey in NC has stem cells but will shepard you through the process via an out of country vendor... He is a good doc. and credible but his waiting time and prices are not on my menu right now. I will try an credible program. I am treated and " labbed " by the most credible people in the U.S. from many different specialties...

    Sick of being tired... going for the cure... just not in the U.S.
  2. pluis

    pluis New Member

    I can't help you sorry, but I would also travel anywhere to feel better again.

    I recently went to Brussels to see Dr. DeMeirleir, and he was very positive regarding to CFS/ME. It is a matter of time right now. He claims to have a medication, but he couldn't say anything specific about it. We need to be patient at this moment.

    I read on a Dutch discussion list that there is a medication for xmrv that cannot kill it however it can put the xmrv to sleep. Don't know if this relevant to the above. But maybe good news.

    Hang in there.

  3. beanier

    beanier Member

    Here's a piece written by someone in regular contact with Dr. Cheney. She says that it's not necessary to go through Cheney, anyone can go to the stem cell clinics he uses. Cheney thinks that it helps the stem cells 'take hold' if you also do the cell signaling factors he uses.


    CFS and Stem Cells: A Warning

    by Carol Sieverling

    Paul Cheney, MD, PhD has accompanied two groups of CFS/ME patients to stem cells clinics in Costa Rica and Panama this year, and many more will be going to Panama this fall. The stem cells come from the afterbirth (placenta and umbilical cord) of healthy new born infants and are thus considered adult stem cells, not fetal. Future patients will also be given their own stem cells derived from belly fat in addition to the afterbirth stem cells.

    Though it's early yet to know the full benefit of the stem cell transfusions or how long such benefits will last, initial results range from good to spectacular. This has prompted several CFS/ME patients to seek out stem cell therapy on their own.

    Dr. Cheney has three concerns regarding CFS/ME patients undergoing stem cell therapy.

    1) Re-Boot Gene Expression with Cell Signaling Factors

    Dr. Cheney believes that better and longer lasting results will be obtained from stem cell therapy if patients first shift or "re-boot" their gene expression to a more normal genetic expression. "Gene expression" may not make sense to some, so here's a simple explanation. Individual genes are either "on" or "off". If they are off, something may trigger them into turning on, such as diet, environmental exposures, pathogens, toxins, stress, etc. Once on, it’s a matter of degree, like a dimmer switch. They can be on just a little, on moderately, or on all the way.

    In all chronic illnesses, the body attempts to compensate or adapt to the illness. Doing so shifts the gene expression. The gene expression of a person with CFS/ME is far from normal - it reflects the illness.

    The overall gene expression is difficult to change. Even if you address the underlying cause(s) of an illness, it can take months or even years for the body to realize the illness is gone and allow the gene expression to gradually shift back to normal.

    A great example of this is Dr. Cheney’s own heart transplant made necessary by a diagnosis of idiopathic cardiomyopathy. After two years of increasingly severe symptoms, the underlying problem of heart failure was corrected surgically in a matter of hours. However, even after an outstandingly successful transplant, a resulting cardiac output of someone in their 20’s, and time to recover from the surgery itself, Dr. Cheney’s functional capacity was still very much what it had been before the transplant. He asked his doctors why he still felt so incapacitated. One doctor told him, “Well, your body adapted to the reality of a failing heart in order to survive and now that your heart is fixed, it will take a year or two for your body to re-adapt back to the reality of your new heart.”

    In other words, all chronic illness always has two problems to solve: the problem at the core of the illness and the adaptation the body makes to survive. The first can sometimes be fixed very quickly (hours to weeks) but the latter takes time. There is no “hours to weeks fix” to the second problem of adaptation because it becomes programmed into one’s gene expression, also known as phenotype.

    Since his surgery and adaptive cure from heart failure, Dr. Cheney has found that certain low molecular weight peptides called Cell Signaling Factors (CSF's) have the ability to more quickly shift gene expression towards normal as measured by echocardiography. CSF’s can often improve function within 90 days, though tests results show progress well before the patient actually experiences it. For instance, measurements of cardiac diastolic function typically improve months before patients report feeling better and doing more. There is also the problem of genotype corruption which can only be addressed by stem cells.

    Over the last three or four years he has determined which CSFs are most beneficial to CFS/ME patients. He does not order them from a company, but has arranged for his own private production of heart, pancreas, liver and kidney from the respective organs of bison. The brain CSF, also privately produced, is of porcine (pig) origin. The CSF's are in a cream-like form and are typically rubbed into the forearms three times per week to daily.

    The use of bison as the primary source for the CSF's stems from several factors. Bison are incredibly aerobic animals with vast aerobic energetic potential. They are significantly more organic than virtually any other meat source. Finally, they are only one of two known animals who never get cancer, the other being shark. They also live three to four times longer than beef cattle and they do not have "mad-cow" disease, though skin cream makes this a non-issue. Finally, bison CSF’s are 50-100% more potent than comparable porcine or bovine CSF’s, as measured on echo.

    Dr. Cheney uses adrenal and thymus CSF's for testing purposes only - never for treatment. CFS/ME patients respond very negatively to them, usually with a major drop in energy on echo. Adrenal and thymus CSF's should never be taken by CFS/ME patients. Porcine Liver also has a very negative effect in CFS patients and should not be used either for therapy.

    Dr. Cheney is the only source of CSF's made from bison because at this time he feels that they need to be used only under the care of a medical professional familiar with their use. For this reason, he only sells them to his own patients. He plans to also sell them to a few other physicians who are currently learning about their use, how to incorporate appropriate pretreatments, and how to individualize the CSF protocol for their patients. Information about the physicians who have access to the CSF’s and know how to use them will soon be posted on the Cheney Clinic web site (

    There is anecdotal evidence that the use of CSF's can significantly improve the benefits of stem cells. An 80-year-old man with Parkinson's Disease as well as Coronary Artery Heart Disease (history of two heart attacks) was part of the group that received four consecutive daily transfusions totaling 45 million stem cells the last week of May. (He does not have CFS/ME but is related to one of the CFS/ME patients.) He’d been using four of the CSF's for 18 months. While still in Panama receiving the stem cells, the tremors began disappearing and he was able to hold a fork and eat peas for the first time in two years.

    One week after his last transfusion, an echo revealed that an area of his left ventricle (a chamber of the heart) that prior to the stem cell transfusions was dead and not moving, was now alive and moving. At that time he also had much less hand tremor, was walking more upright with much less shuffle and swinging his legs much better when he walked. He threw away his cane. The allergic bags under his eyes disappeared. He looks, acts and talks as if he were 10 years younger. His face is pink now rather than pale and gray. He is more alert and doesn't slur his words. He feels much better and has much less foot edema. He even went back to work part-time.
    The doctors at the Stem Cell Institute, who are familiar with Parkinson's cases, were astonished at the degree of benefit he experienced, and so quickly. They are very intrigued by the potential of CSF’s to increase the benefits of stem cells.

    Three studies* of patients who received stem cell transplants in the 90’s revealed that despite initial success, about ten years later the stem cells had been corrupted and the patients’ disease returned. Though the stem cells worked as expected and lasted 10 years, they were eventually corrupted by the same disease process that damaged the very cells they were replacing.

    Dr. Cheney believes that CSF’s are necessary both before and after the transfusions to increase both effectiveness and durability of the stem cells. According to Dr. Cheney, “Putting stem cells into a corrupted environment will eventually corrupt the stem cells and blunt their otherwise potentially impressive benefits.” To use another of Dr. Cheney’s analogies, if you correct the “software” problem first (shift phenotype with CSF’s) and then address the “hardware” issue (shift genotype with stem cells), you’ll get much better results. You don’t expose a new hard drive to corrupted software programs, or the system will crash again! This is why he recommends that his patients continue to use the CSF’s even after the stem cell transfusions. Doing so is designed to prevent the gene expression from shifting back to the configuration of the original illness and corrupting the stem cells.

    Care must be given to a corrupted gut ecology before receiving stem cells.
    Recent publications, especially by Kenny DeMeirleir out of Belgium, as well as others, suggest that corrupted gut ecology is playing a very large role in a subset of the sickest CFS/ME patients. This corruption must be addressed or it may thwart the effects of stem cells or degrade their benefits over time. The gut ecology must be measured by appropriate tests (such as the GI [2] panel from Diagnos-Techs, and an integrated effort made to reduce the effects of this corrupted gut ecology on CFS/ME physiology. Stem cells can help attack the root causes of this corruption but the gut corruption and its consequences need to be minimized ahead of the stem cell transfusions. The core approach to improving the gut ecology is a modified elimination diet, copious use of digestive enzymes, immune support using bovine derived antibodies and immune factors (colostrum) and the judicious and careful use of probiotics with special attention to support of commensal E.Coli (a beneficial form of E.Coli marketed as Mutaflor).

    3) Go to a high quality stem cell clinic affiliated with a US company.

    Dr. Cheney’s third concern is the quality of the stem cell laboratory and clinic doing the stem cell transfusions. Dr. Cheney chose MediStem, Inc (, only after careful research and consideration of quality control issues. Medistem Inc. is a US-based company that assists in the operation of two clinics in Central America ( because those locations allow them to offer the treatment at a quarter of the cost of the same treatment in a clinic in the United States.

    Dr. Cheney met with Neil Riordan PhD, the laboratory director and CEO of both clinics, and toured their facilities in Costa Rica and Panama before taking patients there. The clinic in Panama is located near, and its doctors associated with, the newest and best hospital in that country. The Punta Pacifica Hospital ( is located in downtown Panama City and is professionally tied to the Johns-Hopkins University Medical Center. There is, however, no direct association of the stem cell clinic to Johns-Hopkins.

    The clinic stem cell laboratory, which produces the afterbirth derived stem cells used in treatment, is located in The City of Knowledge in the former US Canal Zone. Before a company can be established in this prestigious high technology development site, a thorough vetting process and due diligence approval from the Panamanian government is required. The fact that the laboratory is located here signifies its high standards and excellent quality control.

    Touring a stem cell clinic and meeting its clinical staff is not the way to judge the level of treatment one will receive. The key to evaluating the quality of stem cells used and the effectiveness of the treatment received is to be found in the laboratory and its quality control operations, as well as the expertise of the laboratory personnel. Bear in mind that the laboratory and the clinic may be located in separate buildings, perhaps even very separate areas of a city.

    There are serious concerns about stem cell clinics operating in Mexico and elsewhere. There are many bad actors and poor actors. Some actually transfuse patients with saline and claim that it’s stem cells. Others have no quality control and do not test the viability of their stem cells, which means they may have little power to effect healing. Poor quality control could also lead to lack of sterile procedures and at worst patients could end up with no stem cells and an infection!

    Dr. Cheney strongly recommends that clinics and their laboratories in Mexico and elsewhere be carefully scrutinized, especially their quality control procedures, personnel and capitalization. Good stem cell laboratories require millions of dollars to capitalize and cost over a hundred thousand dollars per month to run just for laboratory expenses. They require deep pockets and a decade or more of expertise in the area of quality stem cell production and propagation from afterbirth. Significant capitalization acts to ensure quality control to protect the investment of millions of dollars.

    Adult stem cell therapy holds immense hope and possibilities for CFS/ME, but requires a significant investment. Prospective patients should consider such a major investment very carefully and make decisions that ensure the safest, most effective, and longest lasting treatment possible.

    For more information about the Cheney Clinic and Dr. Cheney’s research, see and


    Here's a reply I got as to the cost-

    John, some of the info (websites for the clinic in Panama which has a great, short introductory video) is in an article I wrote and put online recently. I'll attach a copy. Please see You can contact them by phone or email. The phone is toll free and answered by an American, or it always has been when I've called.

    There are four doctors across the US who are going to have access to Dr. Cheney's cell signaling factors (CSF's) and treatment protocols. The only one I know for sure at this point is Larry Sharp in Fort Worth. The use of the CSF's and the gut protocol is believed by Dr. Cheney and the doctors at the stem cell clinic to increase both the benefits and duration of the stem cell transfusions. At some point all four doctors will be listed on

    The standard protocol (45 million stem cells over four days) costs $17,000, plus travel, housing, food for one week.

    From now on most of Dr. Cheney's patients are having an additional procedure which will involve liposuction of belly fat and the removal of our own stem cells and our own cell signaling factors, which work synergistically with the stem cells. That costs another $3,000 to $3,500 (price isn't fixed yet) and requires an additional week for the lipo, prep of the cells, and the transfusion of an additional 30 to 50 million stem cells plus your own cell signaling factors that are lying dormant with your stem cells.

    The condo we're staying in has 2 BR units, 2 bath, kitchen, washer/dryer, internet access wifi and hard line, AC, near shops, a grocery store. It's $200 a night or $1200 a week. It may have 3 BR units, waiting on that answer. The stem cell institute picks you up and drops you off each day, and also mets you at the airport and escorts you through customs - no lines or waiting.

    All the best,


    The paper on Rituximab treatment(B-cell depletion therapy) says that the doctors in that study did autologus stem cell treatment and it didn't do anything for the patient(s?) they tried it on, so I don't know if I would shell out for the autologus stem cell therapy.
  4. gapsych

    gapsych New Member

    Wow, how I identify with how you are feeling. Unfortunately, it looks like stem cell therapy is still in the experimental stage and there have been some disastrous outcomes.

    There is a reason these clinics are located outside of the US. Maybe in the future?

    Take care.


    Clinics around the world are offering unproven stem cell treatments to desperate patients with diseases like Parkinson’s and multiple sclerosis, a new report says, and consumers should be on the lookout for snake oil salesmen. A new set of guidelines issued by the International Society for Stem Cell Research (ISSCR) gives consumers some hints on how to identify the scammers: Beware, it warns, of clinics claiming to treat multiple diseases with the same cells, boasting that there is no risk, and offering patient testimonials – rather than results from clinical research – as evidence that their treatment works. “Patients want to believe so much that a treatment is helping them that they can convince themselves that is has” [New Scientist], the guidelines caution.

    In an accompanying study in the journal Cell Stem Cell, researchers examined the direct-to-consumer advertising that shady clinics use to attract customers. They looked at 19 Web sites that advertised stem cell treatments in several countries, including China, Mexico, and Russia, suggesting that stem cell clinics are becoming a lucrative part of the “medical tourism” industry. Researchers wrote: “The average cost of a course of therapy among the four websites that mentioned costs was $21,500, excluding travel and accommodation for patients and care givers. And examples of serious treatment side effects can be found” [Reuters] for the types of treatments being advertised.

    Stem cells, found in embryos and certain adult body tissues, can grow into many different types of cell; researchers are investigating ways to use them in regenerative medicine, in which damaged cells or even whole organs could be replaced. While the research is still in its early phases, news reports of potential treatments and cures have raised the hopes of many patients, ISSCR official Sean Morrison says. “There are many doctors tapping into the public’s sense of stem cells’ potential to cure in countries with looser medical regulations…. But the details of stem cell treatment are much more complicated” [National Geographic News].

    The survey of Web sites advertising stem cell treatments found that the clinics offered to treat a wide range of ailments including Alzheimer’s, spinal cord injury, blindness, and heart disease. The survey found that the sites often played down the experimental nature of the treatments and made little mention of the side effects that could result. “I think these Web sites are dangerous,” said [George] Daley, a Boston stem cell researcher. “They overpromise effectiveness and safety of the therapy and they completely underestimate and underinform about risks. … (Such) overhyped marketing directly to the patient is putting patients at risk of financial exploitation at the very least, and physical danger at the worst” [AP].
  5. ulala

    ulala New Member

    this information.

    I read the study that you mentioned. You wrote "The paper on Rituximab treatment(B-cell depletion therapy) says that the doctors in that study did autologous stem cell treatment and it didn't do anything for the patient(s?) they tried it on, so I don't know if I would shell out for the autologous stem cell therapy"..

    Here is the link to that paper:

    According to the study only one of the three patients had an autologous stem cell transplant. It says that this patient was diagnosed with classic Hodgkin's disease and the stem cell transplant did not help her CFS. She was the only patient with Hodgkins disease.

    Your statement connecting the fact that autologous stem cell therapy did not help the only patient who had that ttreatment, and was the only patient with Hodgkins, seems to infer that because of this result autologous stem cell therapy may/would not help others. That is quite a leap. I'm just saying it's a bold statement. [This Message was Edited on 12/25/2009]
  6. dvdav2000

    dvdav2000 New Member

    WOW... I learned so much from the posts...

    If you all had a choice who would you go with ? The Panama place sounds like the choice. ?

    Do you go through Sharp or Cheney for the cert. ? or others, or direct ?


  7. dvdav2000

    dvdav2000 New Member

    Dave here. Been on the board for 8 years and have been following the stem cell success. I have been told I am a good candidate and am starting my process. I saw a " response " type of post here that described the Panama deal, and the extra Cheney patient procedure, also reference to lodging. Any help on identifying a contact at the source that I could kindly access. I am the patient and would respectfully follow any protocol that has already been established. Would calling the Panama facility directly be the right way ?
    Any help appreciated.

  8. ladybugmandy

    ladybugmandy Member

    dave..just out of curiosity, why would you do stem cell now, when XMRV has been discovered?

    i personally would go to india for the stem cell procedure....but maybe i am biased because i am indian hehe
  9. MKate

    MKate New Member


    I'd love to find a doctor who could interpret Cheney's stuff? How????

    I can't even get a doctor to give me VItamin C IV's eventhough my symptoms nearly disappear when I get them!!!!!!

    I wish he would PUBLISH ===== and fight for his protocols to be taught. We can't get them here in the US!

  10. ulala

    ulala New Member

    a Hematopoietic Stem Cell transplant? Do you lose your hair from the Cheney treatment?
  11. ulala

    ulala New Member

    of his CFS patients 9 months after stem cell treatment. Interesting he said thsi patient was XMRV negative.
  12. spacee

    spacee Member

    Very interesting. Plz keep us informed. I was on a plane to Washington DC and saw an ad in (I think) one of the mags on the plane (US Airways) about Stem Cell in Germany.

    I think that going to the one Cheney uses would be ideal though. Oh, I wish I could get it done.

    Does it cost like $17,000? If I never had to have it done again, I could do it. (I can make do with my 60yr old kitchen).

    Your friend,

    [This Message was Edited on 12/31/2009]
  13. MKate

    MKate New Member

    Great post!

    What is Cheney talking about when reports this?


    "On echo she demonstrated continued pseudonormal diastolic dysfunction but with a pretty good cardiac output for her size and a normal IVRT for age at 88 msec." OK -- I get that, but???

    "Her ETM was spectacularly improved and is the first CFS case with a normalized pLiver and Fructose backflash. The amplitudes of her only two remaining significant backflashes were 40% improved over May and at low, single digits (3%). Of the seven backflashes the typical CFS ETM shows, she only has three left and one of the three is only 2% while the other two are at 3% which is significantly better than any other patient in the practice by far.


    "Her ETM is both quantitatively and qualitatively improved over May and even better c/w January suggesting the stem cells remain active at nine months out."

    I'm not familiar with anything he's talking about there. Can someone inform me?

  14. aftermath

    aftermath New Member

    I know what it's like to be sick to the point that you would do anything to feel better.

    Still, I couldn't see undergoing an unproven stem-cell therapy for an illness WITH NO KNOWN CAUSE.

    I see this is really playing with fire. The cause/mechanism of this illness needs to be elucidated before things like stem cell cures can rightfully be proposed.

    At this point, with the mechanism so close to discovery (WPI may have discovered it--we will likely know soon), I think that any of these experimental "shot in the dark" therapies are a big mistake right now. They cost a ton, and could end up leaving you worse off than you are.

    Personally, I'm going to wait a year before trying any super aggressive treatment right now (although I may try LDN). If XMRV turns out to be the mechanism, the stem-cell theories designed before its discover are likely not the best course of action.
  15. ladybugmandy

    ladybugmandy Member

    if i had unlimited funds and was SURE i didnt have any cancer growing, i would do it.
  16. dvdav2000

    dvdav2000 New Member

    I have met Spacee in the past, and in person ! ! , and hi Ladybug... I have been reading about the stem cells, the Cheney progress, etc. If it is somewhat safe and non toxic spending $ 20,000 to have a " blast " may be in line. Spacee if you recall at the CFIDS conf. in 2007 Cheney had us all going for heart work ups after the " hypoxia " dinner talk... lol... after Dr. T sang and folded balloons for the kids at the cocktail hour....

    I guess since I get chelation, and iv vitamins, I am the " infusing " type and the stem treatment would seem like another " bag of cure "... but I am becoming very aware of the ramifications and it is very serious stuff. BUT IF IT COULD HELP...

    As far as XMrv goes it will take awhile to get the whole ball rolling and I have not taken any anti- Vir. therapy. My profs. and I are still waiting for Valcyte to be declared a " cure all " but it is not, and in some cases very toxic. ( plus it goes Generic next year..) XM will be a political and clinical footballl for the next 12 months, and frankly in 12 months I can be on the road to recovery and also $ 20k lighter in other " whatevers... "

    I know of people who spend so much money every year chasing down this cure and that cure... I'll tell you for $ 20k I would give it a go...

    Ladybug... I researched therapy re: India and didn't find alot. Any tips ??

    Spacee... are you going to the CFIDS grp meet in Miami, Jan. 13. Dr. K is sched. to drop in and " share ..." I'll bring the stem stuff up during the Q & A and before the


  17. spacee

    spacee Member

    Yes, I remember the things you mentioned well. Cheney is still into 'hearts'. I subscribe to his research letter. He says his #1 antiviral is artemisinin. His is prob. rx but it comes in OTC supplements. I have ordered some but I think I need to know what virus I am fighting if I go that route.

    Cheney has been very excited that the artemisinin has reversed the distolic dsyfunction in one patient and greatly improved it in others.

    I seem to really fit in to one of his groups. The ones who function much better in the late afternoon and pm. I had never read of such anywhere else. This has just happened to me since I saw you.

    But since I am this way, it is extremely difficult to make it to meetings. Could you post about it after you go?