posted
This was already announced over on the CFS forum http://forums.aboutmecfs.org/forum.php but I wanted to post it here because I spoke with the organizer and told her some lyme patients might be interested. Some of you may have heard about the preliminary success that Dr. Paul Cheney has had with CFS patients getting stem cell transfusions over in Panama and Costa Rica. So far, he has had a few outright cures and many with significant clinical improvement. I will post my summary of these results after this. The most promising result for me was that some XMRV-pos patients were XMRV-neg post transfusion. Many in the CFS community agree that stem cells are one of the most promising therapies readily available right now, but the cost (15-20k) has been a major deterrent. I've spoken with a few lyme patients (Amy and Monica) that have gone to India for embryonic stem cells, so I know stem cells are on the radar for lyme patients as well. It's difficult to say how cord stem cells stack up next to embryonic, but I think the consensus coming out of CFS/LLMD clinics is that cord cell are far more effective than autologous (extract our own stem cells, culture and multiply, infuse back--Moraga is an example). Autologous has reaped huge improvements for musculoskeletal conditions such as arthritis though.
Molly29 is a CFS patient that went to Costa Rica last year. She was nearly bedridden prior to going and is now working full-time again at a very stressful job. Due to her own experience, she set out to negotiate a group discount so that more of us can afford the treatment and managed to get a group discount of 10k each if we get at least 10 people (no upper limit). Many of us have already signed up (myself included), but I wanted to make sure that lyme patients did not miss out on this opportunity.
Please message Molly if you have any questions. She is very helpful about answering any questions as long as you are respectful. Please remember she is getting no kickbacks on this deal and taking time out of her "normal" life to help us patients. Also be prepared to talk on the phone because she has gotten inundated with emails and would rather do phone. You may need to register on the CFS forum in order to message her first: here is her profile--
posted
Here is my recent post summarizing clinical results with CFS patients at this clinic
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Stem Cells--Curiouser and Curiouser I'm gonna keep this cut and dry because I'm taking quite the beating from my current treatment. For the last few months I've been sleuthing around trying to dredge up more info on stem cells, and there are several developments that I wanted to share. But let's start out with some public information I already posted before from http://www.cheneyresearch.com/category/subscribers:
Results of stem cell therapy at 7 months in a family of three.
Three family members, mother, son and daughter, all with CFS, were evaluated recently in my clinic. They all became sick in Prague, the Czech Republic, on the mothers sabbatical LOA from her college teaching position after all had a chicken-pox like illness. They are all seven months out from stem cell therapy in Panama. They all have improved significantly following stem cell therapy with the daughter claiming a complete cure after 17 years of illness at the age of 29. She is the second stem cell patient claiming a complete cure and includes an unrelated 23 year old male patient, also 7 months out from stem cells. Both cures took at least 90 days to become manifest with the first thirty days exhibiting significant hypersomnolence and with little energy to do much and typical for all the CFS stem cell patients (N=13). So far he has accompanied 14 CFIDS patients to Panama, and I believe he has a total of 2 complete cures, 1 non-responder (whom previously had complicating issues), and the remainder with significant improvement. I'm not sure how "significant" was measured, but I'm guessing with his ECHO terrain mapping. Besides Cheney patients, there are 2 other patients I know of, one of whom posted about her experience on the stem cell thread at Cort's Phoenix Rising forum http://www.forums.aboutmecfs.org/showthread.php?484-Stem-Cells. The other is an ex-Peterson patient whom was part of the original Incline Village cohort and is now able to do aerobic exercise.
I have reliable sources telling me that at least 1 of the 2 Cheney patients claiming a complete cure was XMRV positive before treatment with a re-test pending. There is also another patient that was XMRV positive for culture before stem cell transfusion and negative afterwards. It seems that stem cells stop XMRV from replication at least temporarily: the question is whether this will hold. In fact, Cheney believes that stem cells are the best thing for stopping immune abnormalities dead in their tracks that he's ever seen, to the extent that even chronic allergies (in a CFIDS patient) were reversed. As for keeping XMRV from replicating after stem cells, he seems to think artesunate (a NF-Kappa B inhibitor but also inhibitor of herpes viruses and HIV) is sufficient and mentioned a German study that backed this up. At this point, he is not advising any CFIDS patients to take any AIDS drugs, particularly AZT. Although he is very high on the XMRV theory per Mikovits, he says it is much closer to HTLV because it replicates so much slower than HIV.
For confidentiality purposes, I can't detail all the clinical markers that improved after treatment, but they ranged from markers of oversensitivity and inflammation, antioxidant enzymes, bacterial overgrowth, hormones, to tolerance for methylation supplements (using his testing, he showed that CFIDS patients suffer methylb12 and folate-induced backlash).
Despite how promising this sounds, there is still a huge risk factor: cancer being one of them. However, with XMRV positive the cancer risk is already present, so stem cells might make you par for the course. Obviously age is a huge factor here. Cheney isn't sure if stem cells for those 40 and up can lead to complete reversal. Compared with other treatments like neural therapy, stem cells take only 1 week, commonly leading to hypersomnolence for 30 days, and a virtual rebirth afterwards for the best responders. They're expensive, in the range of 15-20K, but those of us that have been sick the longest know that the money we've already spent and the money that we will spend to maintain quality of life without significant earned income makes that figure seem like chump change. Even if we need repeat transfusions every 10 years, the net present value of that figure is less for the rest of my life than what I spent on treatments last year alone.
My biggest worry was, and still is, XMRV reinfection post-transfusion. If there were a nontoxic tried-and-true way of keeping the virus from replicating (or even better, eradicating as peptides such as Peptide T may have potential of doing), I would probably fly to Costa Rica tomorrow. As it stands, all we really have is a leap of faith that the virus won't revive within the next 5 or 10 years.
So far, all of my patient friends that are in their 40s and above are telling me I'd be stupid not to get stem cells this summer with the combination of age and coming up on my 5-yr mark in October. They of all people know, more than how much we have to gain with a therapy like this, how much we have to lose if we let our youth pass by in postexertional malaise and derealization from society. I'd still like to see how the other 12 that have had "significant improvement" respond over the next few months. 2 out of 14 claiming complete cures is 1 more than the number of complete cures Cheney famously claimed to have achieved at a conference pre-dating stem cells, but that's still only a 14% cure rate.
For now, to prepare for the possibility: 1) I'm trying to get a phone appointment with GMA or Dr. S in Texas (as far as I know these are the only non-Cheney practitioners using his CSF's) so I can start taking Cheney's cell-signaling factors (derived from bison peptides). 2) I'm continuing to correct corrupted gut ecology with VLS #3, d-lactate free Custom Probiotics, high enzymes+betaine HCL, sanpharma suppositories (Mucor, Candida, Firmus, Quentan tested best for me). 3) I will also test for artesunate (Dr. Cheney uses a form of artesunate called hepasunate, made by a company called hepalin).
Cheney doesn't advise anyone get stem cells prior to knocking down all three.
[ 09-19-2010, 02:02 PM: Message edited by: sixgoofykids ]
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
does this mean it will cost 10,000 a person?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
It is tax-deductible if you pay through a particular non-profit it can be closer to 6-7k depending on your tax bracket (or if someone else writes it off for you), and you also lock in the price for life in case you need to go back.
Last year I spent close to 50k on medical treatments; this year already almost half of that. Hopefully I won't need multiple transfusions but even if I had to go back to panama every few years to get another transfusion it'd still be worth it.
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posted
Go ahead: you laugh, I'll ignore your post. I have CFS (was CDC positive for lyme per igenix, treated with long-term antibiotics, biophoton therapy for lyme, none of my classic "CFS" symptoms improved).
I'm not here to argue about about CFS and lyme. I used to post here a lot but stopped because people like you told me I had lyme even though it was a distinct possibility that was just one of the many passenger pathogens that I had due to a retrovirus that suppressed my immune system. I didn't discount either possibility, but people like you seem to know better. Like it or not, ME/CFS is what I use to label my illness.
This post is about stem cells. If you're interested, follow through and contact. If not, don't make this your personal playground for offensive comments.
I do not have statistics on lyme patients. I will ask.
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Haley
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I didn't mean to offend you. I'm sure that stem cells help people. I have just never heard of a group discount. I'm all for anything that will help. My attempt at keeping things light, sorry. I can remove the post.
I'm not arguing. I just would like to know how many Lyme patients have been helped with this therapy.
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posted
You haven't heard of a group discount for this particular clinic because it hasn't existed. I cannot reveal the reason Molly29 was able to get this deal, but I can say that there is no reduction in quality from what the CFS patients (including Molly) usually get for 15-20k. I was also incredibly skeptical of why the clinic was willing to lower the price, but Molly's explanation was sufficient to allay my concerns.
If you're curious, please ask Molly and she may oblige, but this is not in my place.
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posted
No worries Haley. I would be seeking the same information as you and I'll try to obtain it shortly.
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CD57
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Thanks Mojoey. I think it's really cool that you came over here to post this and also it is cool for Molly29 to negotiate.
Let's face it...there is likely a ton of business potential for the stem cell clinics, Panama, and other, so they probably see the value in group discounts.
Now -- are these cord blood stem cells?
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CD57
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Mojoey -- have any Lyme patients gone to this clinic, do you know?
I have LLMD appt tomorrow. Will ask him, he is pretty up on this stuff. Will post what he says here.
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posted
I think it is likely they are borderline losing money on the group discounts. If there were such value for them I think I would've heard about it during the year or so I've been following them. I have reason to believe that a discount of this magnitude is a unique opportunity unless Molly can organize another group trip.
Remember: due to this clinic's sterling reputation and the press releases Dr. Cheney is putting out about them, reasons to believe it might be successful for autism http://www.translational-medicine.com/content/5/1/30, and numerous testimonials on youtube for other chronic illnesses such as MS (just put in "stem cells" and "costa rica"/"panama") they are not suffering from lack of demand. Based on their current prices, they are already booked well into August.
posted
The entire treatment takes 4-5 consecutive days. Right now the plan is to go sometime in September or October.
I forgot to mention: because we all need to go at the same time in order to get the discount, I think once we get enough people we will begin processing the paperwork and the group will be set, so I would encourage those that are interested to not hesitate to contact Molly to ask questions and do due diligence before it's too late. (I know that sounds like a shoddy sales call, but I'd be remiss if I didn't put out the warning far in advance)
Posts: 713 | From Los Angeles | Registered: Oct 2007
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CD57 I'll have to ask about lyme patients at this clinic. If any GMA patients could ask Dr. Gordon that'd be great, because he is one of the few doctors that specialize equally in CFS and Lyme disease, is doing trial with Moraga autologous stem cells, and has been recommending his most severe patients go to Panama for some time now.
Personally, I think stem cells are stem cells. If CFS patients are achieving cures with this therapy, I don't see why the same potential doesn't exist for lyme patients. The stem cells repair the immune system, render even infectious retroviruses such as XMRV latent, repair the neurons, repair the tissues etc. I know many of you have doubts about getting stem cells before getting rid of the lyme, and I"m the same: I'm doing everything I possibly can include taking herbal blends for XMRV and treating XMRV nosodes with my bionic 880 machine, but that's only to maximize my success with stem cells, not to replace the need for them.
I think even though CFS and lyme are different diseases (and there are subsets within both), we are all dealing with very similar mechanisms of the body. Our immune systems both need fixing, and regardless of which came first we end up with a host of pathogens and closely related co-infections, vast systems impairment (vascular, gastrointestinal, detoxification), and the disease processes has rendered much permanent organ and tissue damage in the body.
Stem cells don't care what disease you have, they fix what needs to be fixed. The concern should be about the quality of the stem cells and that's why Cheney picked cellmedicine.com (read more in the article I posted in above "warning")
I personally believe autologous stem cells (from ourselves) don't work as well in severe illnesses like chronic lyme and CFS because our genomes have been compromised by certain infections. Lyme has been found to integrate their DNA into our own, and nothing else needs to be said for retroviruses. I think regardless of what type of cells we use, we need a fresh set of uncompromised genomes, which leaves umbilical cord (technically adult stem cells), embryonic, and transplants from donors (although don't know why you would even consider this if you have the first option)
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CD57
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I will ask GMA also, I'm a patient there too. I think I did hear that they were still recommending Panama but had ceased recommending a Mexican clinic to which they had been sending patients. They are still recommending India.
Re the cord blood...the one thing I would be scared about was getting Lyme and other bacteria etc from the cord blood.....Lyme and company are definitely transmittable from mother to fetus. That is a pretty big concern.
4-5 days is not very long, esp. as compared to India for 2 months. How many stem cells are patients getting, do you know?
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djf2005
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Good thread....Thanks.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Please let me know what GMA says. I've already spoken to a few patients but I know Dr. G changes his mind a lot based on what he learns (not a bad thing)
What I"m thinking is...even if they screen for all the viruses/bacteria we know about, there are so many we don't. In my mind, what's important is that we get a fresh immune system to deal with the pathogens. Dr. Peterson (CFS doctor since Incline Village outbreak) said CFS patients walk around with 80-some pathogens daily as identified on the De Risi assay whereas healthy people walk around with 2. No one is completely pathogen-free, but for every reaction there is an equal and opposite reaction: for every broken down immune system there is some lyme, XMRV, and other opportunistic organisms to wreak havoc. Granted some of us get better by blasting away at the agents and giving our immune system breathing room to regain homeostatis; I tried that and I'm sure many of you have tried that without much success.
"Insanity is repeating the same thing and expecting a different result."
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CD57
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hey Mojoey -- how does this clinic get around the possible rejection issue? Will you have to take anti-rejection drugs?
I couldn't find too much info on the clinic on the site (SCI), is there another place?
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Did anyone see the 60 mins story of people going over seas to get Stem Cells Treatments for MS and ALS and it was all a bunch of crock? People were spending 10-100k to get fake stem cell treatments that dont work...Not sure if this is similar at all...
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CD57
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yeah --- that was the clinic in Mexico
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As far as I know, they do not use anti-rejection drugs because of the minimal chance of rejection with cord stem cells based on HLA typing. I will post an excellent summary next by another patient on http://forums.aboutmecfs.org/forum.php that addresses you question
Most of my feedback on the clinic has been from patients and doctors. Their site is on the brief side, but their doctors have called me back promptly to answer all of my questions.
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"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."
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posted
Here is the result of an investigational effort by one patient that answered several questions I had:
Costa Rica/Panama answered my questions regarding safety of treatment Hi everyone, In post #227 I told you that I would get in touch with the clinics in Panama/Costa Rica and Germany and ask them about their experience with the umbilical cord derived stem cell treatment. I only asked questions about the safety of the treatment. The clinic in Germany responded that they only do treatment with stem cells derived from bone marrow. This means that treatment with the clinics in Germany is not an option anymore.
Below you can read what a doctor from the clinics in Costa Rica/Panama responded to my questions.
---------------------- I just wanted to let you know that we have successfuly treated CFS in around 23 patients. The treatment protocol consist on intravenous injections of umbilical cord derived stem cells during four consecutive days.
How much follow up data do you have to this point?
Our company has 5 years experience in stem cell treatment. We have one year experience in treating chronic fatigue patients and so far all of them have seen some kind of improvement. The only side effect they have reported is sleepeness up to 2 months after the treament.
Has this treatment or a similar treatment been used in other deseases over a longer period of time?
Yes, as i told you in the previous question, we have treated other diseases with similar protoocols and we havent experience any side effects so far.
What are the side effects, that you have experienced with this treatment so far?
So far, patients have reported sleepeness, mild fever the day of the injection. The worst that we have seen is that some patients doesnt respond to treatment.
Why do you think the treatment is safe?
So far we dont have any reports of side effects when using umbilical cord derived stem cells. I am attaching a paper that explains the safety of this cells.
How is the procedure used in the report below related to the procedure that you are currently using on CFS patients?http://www.plosmedicine.org/article/...l.pmed.1000029
This procedures doesnt relates to the one you refered. First of all, we only use adult stem cells in our clinics, the paper you are refering uses embionic or fetal stem cells. The adult stem cells doesnt become other cells, they just work by reparing the damage you might have in different parts of the body, and they will disappear form the body in about 6 months after the therapy. There isnt not even [I think this means: �there is not even`` but I will reassure in my next e-mail] one case of tumors secondary to adult stem cell in the literature. --------------- They attached this study to their e-mail, so I could learn more about the safety of the treatment: http://www.cellmedicine.com/doc/Cord...veMedicine.pdf I read the study and will discuss my insights in my next post.
It appears to me like the clinics have 5 years experience with autologus stem cell treatment in general, but not as long with umbilical cord blood stem cell treatment. I will reassure for how long they have been doing treatment with umbilical cord blood derived stem cells.
reading article "Cord blood in regenerative medicine: do we need immune suppr... I studied this scientific article (Publishing date: 30 January 2007), that I received from a doctor of the Costa Rica/Panama Clinics.
From reading the article, I get the impression that treatment with cord blood derived stem cells is very likely to be safe.
Cord blood has already been used as a stem cell source for the treatment of other deseases in the field of oncology for a long time. The �new and unknown`` aspect of the treatment currently used by the Costa Rica/Panama clinics to treat CFS/ME is the use of cord blood derived stem cells without myoablative conditioning of the host.
The authors of the paper discuss in their article reasons, why cord blood derived stem cells could be used without myoablation of the host. They are mainly talking about the risk of graft versus host desease and find a lot of good evidence that suggest that GVHD will not be a problem.
They also talk about other interesting points of stem cell treatment which makes this a very interesting article. I took the following notes:
My notes
page 3 cord blood derived CD34+ cells seem to have higher hematopoietic activity then bone marrow cells Mesenchymal stem cells from cord blood expand 20-fold and mesemchymal cells derived from bone marrow only 5 times
page 4 clinical experience (n=541) with cord blood transplants showed no graft versus host desease patients with depleted t-cells through myoablation get GVHD.
page 5 the graft might be cleared from the host over time but might still have therapeutic effects until then. there might be a view graft cells remaining in the host which might continue tho show therapeutic effect.
Mesemchymal stem cells do not need myeloablation for efficacy as proven in phase I-III clinical studies with bone marrow derived mesemchymal stem cells for crohn's desease. There is no such evidence for cord blood derived mesemchymal stem cells but these cells may be even more efficient because of their proliferative potential. there have been only 3 published reports of non-conditioned recipients receiving cord blood cells for regenerative purposes some regenerative activity was observed no GVHD was observed
page 6 Authors give suggestions for Strategies for clinical implementation Cord blood together with stem cell activators Cord blood plus natural chemoattractant De-immunogenized cord blood graft.
Conclusion positive I also wrote down some questions, which I think will be helpful to you only after reading the article. If somebody else feels like studying this article too, I can send him/her my questions and we can discuss them. I don't think the article is a must read, but if you want to understand more about this treatment, reading the article might help.
Some of my current considerations regarding the treatment
I am not sharing the concern of some of the posters on this thread who are worried about the risk of reinfection with XRMV. I would just do the treatment again, if my body got reinfected with XMRV.
From what I know until this point in time, I think there is very little risk for side effects with this treatment. Cord blood derived stem cells have been used in oncology for a long time. The only thing that is really new about Costa Rica/Panama clinics stem cell treatment is that they don't do myoablation prior to treatment. The biggest risk associated with this innovation in stem cell therapy was graft versus host desease and Costa Rica/Pnama clinics as well has Dr. Cheney do not report a single case of GVHD in their patients.
There has not been reports on side effects so far, but what if their is side effects later in time? I think the risk for delayed side effects is little, because most therapeutic stem cells are cleared from the host after a year. I don't know of a drug that caused side effects in people after they where not taking it anymore. Please tell me about it, if there is such a drug.
Yes there is a risk, although it is small. People who are doing this treatment are doing it based on case reports and not based on clinical studies. There must be a reason, why drugs only get approved after their effects and safety where proven in Phase I-III clinical studies. I think the risk is small enough, so that it is worth a try.
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Hoosiers51
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I hope my opinion is not unwelcome here (like if positive opinions are only welcome), but I'm gonna give it just in case it helps someone.
I went to an alternative clinic in Nevada awhile ago, where they did various kinds of injections. At one point, about 7-8 years ago, they were using actual human stem cells illegally (some people got better, some people didn't...my guess is at least half didn't). Then they switched to other immune boosting substances.
What I was getting was described as "plant stem cells," though I am not sure if it has any relation to the "plant stem cells" that some practitioners in the U.S. are currently using.
Anyways, as someone who has gone through a similar situation (though obviously the treatment was different), I have some advice.
Beforehand, what you feel is hope. You hear the stories of people who have improved. And there will always be people that improved.
But then think about what you will feel if it doesn't work, or if it only partially works and you still have a lot of the same problems. And keep in mind this is a blood product that could carry disease.
What I felt afterwards was fear and doubt. Who were the people that had injected stuff into my body? How do I know what I was getting was pure? What if that risk I took is going to result in a lifetime of health issues?
Those kinds of doubts DON'T hit you hard beforehand, though they cross your mind. They hit you afterwards, when/if it didn't work.
After the doubts/fears I have been through, I just want to encourage people to think really hard about what you are deciding, and realize that afterwards, you might have to live with the anxiety associated with putting something in your body that was not approved by any regulatory source.
I'm not trying to scare anyone away, and I hope it helps whoever tries it, but I just wanted to give some perspective. This is a blood/human product. It's not like the Bionic or other alternative overseas treatments that I would assume are safer.
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sparkle7
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Thanks for posting this. I read about Dr. C's stem cell use. The groups have been kind of small, though. I can't afford this sort of thing in any case - but it may be wise to wait a bit to see if the results continue to be positive.
One person was recently cured of HIV & leukemia with stem cells. The stem cells were derived from a person with natural immunities to HIV. There are people who do have immunities out there.
Maybe we need the source of the stem cells to have immunities to the various viruses, pathogens? Just a thought. I'm not a doctor or scientist.
I can see why people would want to try this to get well again. I'd like to see how the results go over time. Please keep posting. It will be interesting to see the outcome.
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Good points Hoosier. I wouldn't want anyone to do this without doing plenty of research. I've been digging around for well over a year and only recently decided it's right for me.
I think the doubts SHOULD occur beforehand; otherwise you should not go. If hope is your only driving motivation to go to panama, please refrain because there are no guarantees with any treatment, let alone stem cells, and I can only imagine the type of catastrophic letdown that would result in.
As for the blood issue, I have to laugh when I hear people say they're afraid of donated cord blood that has been tightly screened for infections and that has led to a positive response in 28/30 (so far) CFS patients. You know who's blood I'm most afraid of? My own. I don't want the 80+ infections, high C4a, high TGF Beta-1, low NK cells, impaired SOD, GPx, CAT, NADH and NADPH systems--you name it I probably don't want it and that's why I don't want autologous stem cells.
I think it's ok to be a skeptic, but letting our disappointments from past treatments (which is most if not all of them, otherwise you wouldn't be reading this right now) put us in a state of fear is not healthy. This opportunity isn't targeted at the desperate but those who are rational and proactive enough to make an informed decision despite getting screwed by snake oil and the medical establishment alike as many times as I have.
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MariaA
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posted
Hi Mojoey,
What are you doing herbally for XMRV?
-------------------- Symptom Free!!! Thank you all!!!!
CD57
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posted
Hoosier I wonder if you went to the SIMC in Nevada? Interesting. A friend went and had great results. Did you improve?
here's another question Mojoey -- how many times are the CFS patients going back to Panama clinic? Trying to get an understanding of costs.
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SForsgren
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For XMRV - Liposomal artemisinin is something one doctor I spoke with is using. Also neem.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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So far I believe all of Cheney's patients have gone only once. I think patients typically wait at least a year to let the improvements run their course since the cells are cleared from the body by that point.
I actually decided to hold off on the herbal blend for XMRV. The main agent is mistletoe which has been shown to have inhibitory effect on retroviruses. I hope to treat with bionic and XMRV nosodes shortly
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sparkle7
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Scott - do you have any info on dosage for the Liposomal artemisinin & neem?
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djf2005
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up
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
A host of lyme-related questions were just sent to the doctors at the clinic. Will post them as soon as I hear back.
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CD57
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OK I talked to one of the doctors today at the Panama clinic. I also asked my LLMD (not GMA, Mojoey) about this today. Hope this is of interest.
Here is what the doc at the clinic told me: there have not been any "Lyme" patients at the clinic, but that they do recognize that some of the CFS patients have Lyme and company in the mix.
The cord blood is from Panamanian donors and is not screened for Lyme and co, as they do not have this problem in Panama.
The stem cells will not kill the infection/s. (yes we know).
Rejection drugs are not necessary as the protein coat has not yet formed on the cells (I think I got that right).
She could not comment on this treatment vs the embryonic clinic.
Here is what my LLMD said: he has been watching the Cheney cohorts and is impressed with how methodical this doc has been in tracking patient results. He seemed supportive of his patients going.
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posted
Browsing through this thread tonite - I'd like to go back to the poster here who mentioned plant stem cells - there was a speaker at the recent LIA autism conference who spoke about using them. Have any of you researched that possibility as well?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
First I just wanted to announce that we cinched the group today, so we'll probably be going in September.
CD57,
Thanks for reporting back to us. Please let us know what GMA says as well.
Yes that is what I heard as well, but I know they have treated many patients with lyme. If a "CFS patient with lyme" gets better, I don't think it's much of an extrapolation to say a "lyme patient" would get better. Those are the stats I'm waiting for and will post soon hopefully.
The stem cells by themselves will not kill infections: they reconstitute the immune system and we kill the infections.
Yes rejection drugs nor any other immunosuppressant drugs are used.
Cheney is not the first doctor to treat CFS patients at this clinic but he certainly put "stem cells for CFS" on the map. All anyone needs to do is talk with the top doctors at the Panama clinic to fill in the blanks.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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CD57
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Guess Costa Rica has laws more like the US. Bummer!
Costa Rica shuts stem cell clinic Leslie Josephs MEXICO CITY Wed Jun 2, 2010 7:10pm EDT
MEXICO CITY (Reuters) - Costa Rica has ordered the country's largest stem cell clinic to stop offering treatment, saying there is no proof that it is effective, the country's health minister said on Wednesday. About 400 patients, mostly foreigners from the United States, have been treated at the Institute of Cellular Medicine in San Jose for multiple sclerosis, arthritis, spinal injuries and other illnesses. "This isn't allowed in any serious country in the world," Health Minister Maria Luisa Avila said in a telephone interview. The Health Ministry several weeks ago ordered the clinic, owned by Arizona entrepreneur Neil Riordan, to stop performing the treatment, in which stem cells extracted from the patients are reinjected into their bodies. The ministry said the clinic has a permit to store the stem cells extracted from patients' own fat tissue, bone marrow and donated umbilical cords but is not authorized to perform the treatment. Sylvia Molina, an assistant at the clinic, said it would shut its doors on Friday. Neither Riordan nor the clinic's medical director, Fabio Solano, were immediately available for comment. Riordan's team uses adult stem cells, which can be found throughout the body. These master cells of the body give rise to many different tissues and blood cells and are standard treatments for leukemia and a few other genetic diseases. They are different from embryonic stem cells, taken from human embryos. But Riordan's treatment approach is considered experimental by most experts and the International Society of Stem Cell research has warned against so-called stem cell tourism. Doctors at Riordan's clinic have said that they have seen excellent results from the procedure, but ministry officials said that there is no proof that the treatments work. The stem cell treatments at the Costa Rica institute cost between $5,000 and $30,000. China, Thailand and Mexico also offer stem cell treatments, but Costa Rica's stability, modern tourism infrastructure and proximity to the United States had made it a preferred destination for many patients. Riordan has a U.S. company called Aidan Products that sells, among other things, a nutritional supplement that his team says can stimulate the body's production of blood stem cells. He also operates a stem cell clinic in Panama and is chairman of Arizona-based Medistem Inc. (Reporting by Leslie Josephs; Editing by Maggie Fox and Cynthia Osterman)
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sparkle7
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This is an outrage...
I can think of a few reasons why this is being outlawed. All of them are not good.
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posted
Luckily this does not affect the panama clinic at the moment (different country, different govt) but who knows for how long? Sparkle-- we'll go ahead and call a spade a spade, this isn't a conspiracy theory this is common sense. When was the last time a hospital was shut down for killing people? And how many deaths have occured out of the 400 patients mentioned in the article? Ok then.
On a sidenote, some posters on lymeneteurope just posted that Im the same person that touted the bionic 880 as a cure (I never used the word and improvement is far from a cure, even in olde English) and stood to profit from my claims as I'm probably profiting now from being a stem cell clinic shill. Im sure they'll add the costa rica story as fodder for their creativity. It all becomes so predictable after awhile and makes you wonder why people like Molly even bother trying to help people after returning to their normal lives.
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sparkle7
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re: Sparkle-- we'll go ahead and call a spade a spade, this isn't a conspiracy theory this is common sense.
How do you mean this? I'm on your side. I think we should have access to stem cell therapy. I think the reasons why they are closing places that are or may be reputable down is not good.
Could be pressure from a number of different sources... I think this therapy holds great promise. I can see why people wouldn't want to use materials from unborn babies but there are ways you can do it without all of that.
If I were going to use someone's stem cells - I'd probably want to use someone who had some kind of immunity to various pathogens. I'm sure there are people out there who have immunities.
It's just a matter of time... I hope they will allow this research to continue. It will just go on outside of the country & people will travel to where it's happening. Those countries will get the revenue. I hope it won't just be for the wealthy, though.
Looks like medicine is going in that direction. You don't want to get me started on conspiracy theories... LOL
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sparkle7
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PS - I think it's great that people are trying to get groups together to cut costs. I think more of us should get organized to find ways to help each other.
I can see why people would be barking it up in Europe given the reasons (Bionic 880 stuff, etc.) We are mostly all adults & can research things & make our own decisions about how to take care of ourselves.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I was just saying that any of us with a mind of our own know what's really going on. I know whose side you're on Posts: 713 | From Los Angeles | Registered: Oct 2007
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sparkle7
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OK... Just checking. Sometimes communication gets muddled when it's all text & no body language. Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
So now the Costa Rica clinic is closed??? Are the Panama, India, and Thailand ones still available? Is Cheney now going to use only the Panama one?
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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quote:Originally posted by m0joey: On a sidenote, some posters on lymeneteurope just posted that Im the same person that touted the bionic 880 as a cure (I never used the word and improvement is far from a cure, even in olde English) and stood to profit from my claims as I'm probably profiting now from being a stem cell clinic shill.
I agree, the Bionic 880 is a beneficial way to treat the borrelia. I even had good results with babesia and bartonella, though since they took 9 months to "cure", perhaps it was my stronger body that eliminated them.
As your blog suggests, we are soups of pathogens, if we're this sick, it's not *just* Lyme anymore. Everything has to be addressed .... we have to peel the onion and get all the way to the center.
Obviously, I think the Bionic 880 was a miracle, and for me it was, but even still, it wasn't the *only* thing I have done in the past year and a half since I've returned from Germany. Even now I work on detox and continuing to heal my gut. I feel 100% day after day, but I'm limited in the foods I can eat and I know I'm still toxic (ART and my chiro's testing both agree).
The India clinic is open. On another side note, the embyronic stem cells there are from a miscarried fetus that was donated to the doctor. The doctor clones the cells, so no more fetuses are needed.
This might be the right thing for you mojoey. It sounds like it could give you a jumpstart to wellness ...... you've worked so hard on infections, etc.
(BTW, I left you a note on Facebook, looking forward to hearing back from you)
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
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Member # 11749
posted
Keeping fingers crossed that Panama clinic stays open.
BTW MoJoey, I bet I know who it was that had that to say about you and the Bionic.....someone whose inflammatory remarks have gotten them repeatedly kicked off boards! A relief, I might add. Sigh.
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Tracy9
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Joey, can you give us a 101 on stem cells? I'll admit, I'm woefully uninformed. Embarrassingly so, but I'm betting I'm not the only one here.
Can you just back up and give the basic info that any Joe should know but doesn't? Like why it has to come from fetuses/embryos/cord blood, why it isn't legal in the US, just a little of the back story for those of us who honestly don't know and are afraid to ask?
I mean I know it's been a political isssue for a while but I don't honestly know anything about it.
Thanks so much Joey for doing this, and coming back here and sharing what you are doing. And like Six always says, once they start talking about you over "there", you know you have "arrived." You're important!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hoosiers51
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The problem with stem cells is that there are possibly risks (the risks are not well understand, so that's why I say "possibly"). Health risks I would not take, personally.
In my mind, the Bionic had fewer potential health risks. I'm guessing there were no adverse events documented with the Bionic, but that is not the case with stem cells.
The clinic I went to used to use stem cells, and not everyone got better. Like I said, my best guess is 50%, but I really don't know. I just know some people did and some didn't.
But the risks with stem cells are there. Similar to some of the bad things about vaccines that come from aborted fetal tissue.
You have the question of, where the stem cells from the fetus pre-cancerous?
I am sure Joey has looked at the risks, but I am bringing this up for people like Tracy who don't know about stem cells.
"The theory is that because these stem cells are fetal cells, they are designed to proliferate and give rise to new tissue, which means they have the potential to produce tumors."
This same concern has arisen from the vaccines from aborted fetuses.
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posted
Thanks for posting that Hoosiers. I would not do ECS at this time because of the risks you posed.
Here is a quote from the owner of the Panama clinic (umbilical cord stem cells are technically adult stem cells) in response to the 60-minute piece:
"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."
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sparkle7
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This is why I think it may be important to get stem cells from someone who may have immunity to whatever illness is being treated. This may make for better results.
I bet in the future, they will be using genetically modified stem cells. In the case of the guy with HIV & leukemia who was cured - they used stem cells from someone with natural immunity to HIV.
If you get stem cell therapy - you don't know if the particular cells have immunities or not. This may be why the cure rate is not 100%... Just an educated guess. I'm no expert in this.
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Hoosiers51
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Okay, that is good.
Adult cells may have similar potential risks, but I am just not sure, so I won't comment either way. I am sure Joey has researched it more than me.
I thought I read that some scientists are speculating that in cancer, there are "cancer stem cells" that give rise to cancer, and those exist in adults too? But what I am reading is that that is an ongoing theory and not proven.
I am just trying to provide a little bit of counter balance to the conversation. Not trying to be pushy or tell people what to think.
Good luck whatever you decide to do. Nothing I want more than to see people here well.
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I'm glad someone is counterbalancing this thread. I reiterated that I don't want anyone desperate or unwilling (or unable) to do their own research to go. It is simply too experimental at this point, and everyone that chooses to go must take 100% responsibility for the outcome.
From what I've gathered from the medical director of the clinic, there simply has not been evidence of severe risk this far. Of course, there needs to be long term studies before we can make any types of conclusions.
Also, just by googling umbilical cord stem cells and rejection, you should find plenty of sources that state the risk of immune rejection or graft vs host disease is close to nil.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Hoosier I think Stem cell are interesting. This is what comes to my mind: Spirochiets - those bacteria that have a coiling motion lets out antigens onto our tissues and then screws or burrows into muscles or organs. Our immune cells go after the antigen material, which has the effect of attacking our own tissue. The question I have is will the new immune cells also attack the tissues in the same way? After a while anyway. What about the biofilm that protects these life forms? I read something last night that a doctor was beginning to think that biofilm itself is a group of organisms. What can you share about this? My tests are still out until beginning of July. I would consider stem cells - it seems that all the antibiotics and such don't do enough. That it just ends up costing a lot of moola.
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posted
Sorry lemonline, I can't answer that question. You may want to contact the clinic directly for this.
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CD57
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posted
Mojoey -- did the Lyme answers come back from the clinic yet?
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I am wondering why embryonic stem cells would be thought more dangerous than adult, which can be infected. We know cord blood is checked for lyme in mothers of new babies with lyme. And some docs think stem cells can be infected by lyme. So, if you get your own stem cells back or someone else's, they still might be infected with lyme (or another disease). Isn't this dangerous too?
Will someone be posting the results over time with this group that is going? The trouble with these experimental things is that there is no continuing observation and tallying of results. Not by the patients or the clinics. Or if the clinics are doing it, we don' have access to the results.
It is all well and good to say people should research these things themselves, but most of them are not medical or scientific people, and can't get all the information they need.
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up
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sparkle7
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I think m0joey decided not to do this in light of the XMRV studies going on. I don't know if stem cells can help with a this retrovirus. It may be too early to try this kind of treatment for XMRV. There probably haven't been enough studies yet.
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METALLlC BLUE
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It would be interesting to hear how this went.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I heard from a few lyme patients that went (can't give out their names) that did rather well. They were pretty high-functioning beforehand, but said they were able to exercise more for longer after the treatment.
I have yet to hear back from any of the CFS patients. One CFS patient was about to undergo treatment, found out he was XMRV+ on the first day of treatment, and cancelled. So I don't know of anyone XMRV+ that has undergone treatment.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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I have lyme but also have monoclonal gammopathy which is a precurser to multipl mylomas.
I did read once that the only treatment would be stem cell so was wondering if you had any links to share.
Thank you so much for this information.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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METALLlC BLUE
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Personally, given the cost, I'd do research into Rife therapy before I considered this method of therapy. This method may evolve into a strong candidate for treatment, but it's so incredibly new.
I understand though that patients are struggling with a variety of infections which can make the process so much more difficult and choosing a therapy to stick with is hard.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Personally I wouldn't even consider stem cells if the patient has retrovirus and hasn't been treating it for some time. Otherwise it is a strong possibility the retrovirus will replicate during stem cell mitosis (cell division). It may make sense for pathogens such as lym that do not integrate into the host genome (our DNA) and hence have a lower likelihood of being "fueled" by stem cell division. That may be why lyme disease patients have gotten better results than CFS patients.
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posted
Btw, I am aware of the 180 I did on the XMRV issue from earlier in this thread, but the basis for my original thinking that stem cells might actually treat the XMRV was based on potentially inaccurate data. I am not convinced that the CFS patients that were cured by stem cells were actually XMRV-pos before.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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also the related videos. I dont want anyone to get taken for thousands of dollars for something that hasn't been proven to work!
Posts: 32 | From Minnesota | Registered: Feb 2010
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also the related videos. I dont want anyone to get taken for thousands of dollars for something that hasn't been proven to work!
Posts: 32 | From Minnesota | Registered: Feb 2010
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Anyone that is skeptical about stem cells potentially offering huge therapeutic value for many types of illness needs to do some homework. We are beyond the point of "these are universally dangerous" or "we are universally getting scammed" and have moved to what specific ways might they be able to help us and which clinics offer the best quality of stem cells. You can get scammed in any area of medicine, stem cells included. Wake up and find the truth out for yourself.
[ 09-22-2010, 04:35 PM: Message edited by: m0joey ]
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