I know there has been a lot of talk about embryonic stem cell therapy over the years and people (like I was) are constantly searching for more stories and info on what happens in India.
I am going June 14- Aug 16 2010 and will be publically blogging about my experience (like Amy Scher did) on:
I am asking for your love and support and positive vibes while I go this incredible medical journey. We've all been through a lot: you can imagine the research I've done before making a decision like this. I hope opening myself up like this will help others.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pinelady
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Thanks Kyla for sharing. I hope you don't mind if I continue to do so to help. Lots of prayers and hopes for the best.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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CD57
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Thanks Kyla for offering to share with us! We will look forward to hearing your story. I too, have wondered why we haven't heard much.
Posts: 3528 | From US | Registered: Apr 2007
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for those of us who have just joined the site and not to sound rude... But why are you doing this?
Posts: 286 | From St. Louis | Registered: Dec 2009
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feelfit
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posted
GL Kyla, will be following your blog!
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
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Ahodge: follow Kaylas' posted link...she explains everything very well.
But! in a nutshell: stem cells rebuild immune system. she will be taking antibiotics while receiving stem cells. The theory is that once the immune system is working well, the abx will be more effective.
Posts: 3975 | From usa | Registered: Aug 2007
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Looked at your blog and it is very unclear to me what if any treatment you have already had for babesia and bartonella? I would think if anyone else was considering doing stem cell treatment it would be of interest to them to know just how much previous antibiotic treatment you have had prior to that treatment.
After only 2 years of Lyme and coinfection treatment it seems like there would be other antibiotic options still available before doing such an expensive and experimental treatment as stem cells -- that is my perspective anyway.
Also of much interest would be a list of current symptoms when you begin that treatment and then an updated list of symptoms as the treatment progresses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Sorry, I should have been more clear but this is more what I was getting at...
Kyla,
Looked at your blog and it is very unclear to me what if any treatment you have already had for babesia and bartonella? I would think if anyone else was considering doing stem cell treatment it would be of interest to them to know just how much previous antibiotic treatment you have had prior to that treatment.
After only 2 years of Lyme and coinfection treatment it seems like there would be other antibiotic options still available before doing such an expensive and experimental treatment as stem cells -- that is my perspective anyway.
Also of much interest would be a list of current symptoms when you begin that treatment and then an updated list of symptoms as the treatment progresses.
Bea Seibert
Posts: 286 | From St. Louis | Registered: Dec 2009
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I have been treating Lyme and Co. for three years. One of these three have been via IV Rocephin and Clindamyacin.
My website is geared to family and friends who are not interested in a treatment timeline. I currently see a great LLMD, so the abx timeline is pretty standard.
I realize that three years of abx may not seem like a long time to many who have been on them for so long, but it was long enough for me. I have seen no real improvement.
Choosing stem cell therapy is a personal, individual choice and after a year of research, I have decided that it is the best option for me. I am impressed with the results and the scientific evidence.
I know there are many other avenues of treatment options: colloidial silver, rife machines, hyperbaric chambers, homeopathic herbals, more gut wrenching antibiotics, etc, etc, etc. These are experimental and expensive as well.
Again, it is a personal choice. I am doing what I feel is best for me.
posted
hi kyla thanks for putting this out for us and for taking the time and energy to plan on bloging about your experience.
sounds like you have done your homework on the treatment. have you traveled in india or that neck of the woods before?
i am wondering if you have any flexablity on when you go. i am assuming you will be in the south of india.....you are going during the ruffest time of the year .. a little concerned on how hard the monsoon and the heat is going to be on you. i will be looking forward to hearing how this goes for you and i send you best wishes and much luck. i have spent many months in nepal and india if you want any thoughts about the travel part of it or what i would recommend on reading about being there. please PM and i would be happy to help if i could. take care and again best of luck to you!
Posts: 161 | From sonoma county | Registered: May 2009
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I'm actually traveling to the north- Delhi. I'm not really flexible on the travel because of the Summer vacation time I have as a teacher. I know it will be incredibly hot and then monsoon season: the hospital has air conditoning, so at least that's something.
Thanks for answering. I was curious to see whether you had tried any of the newer more expensive antibiotics such as vacomycin, tigecycline, invanz or xyvox.
I know with hubby bartonella or BLO or mycoplasma or whatever shows on his F lab and Clongen bloodslides seems to be the primary infection causing his major neuro symptoms and also the cause of his low RBC and low WBC. Finally after 2 1/2 years of primarily concentrating on that infection I think we may have experienced a major breakthrough.
If you have never had a bloodslide from either the F lab or Clongen lab I would highly suggest getting that done to see if bart or mycoplasma or BLO is a major factor that may need more aggressive treatment.
I think that one of the reasons many people are not very successful with IV IgG treatments is because of an under treated bart or mycoplasma infection and I would suspect that stem cell treatment might not be all that successful in those same patients.
There is more and more info being published on bart especially and how it is immunosuppressive.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Just curious as to if you ever had a good LLMD or not? I'd certainly try different combination meds in strong doses before doing this. Well good luck to you!
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posted
Bea, I didn't quite understand the point you just made about IVIG and bartonella/mycoplasma. Could you explain that more?
You might be interested to know that Dr. C., the ME/CFS doctor treating ME/CFS patients with stem cells in Panama, gives all patients a course of arteminisin before the stem cell treatments.
He uses arteminisin as an antiviral and shifter of the immune system, but it could be killing hidden babs as well. Many of these patients, we have to assume, are coinfected with Lyme and other co's, as Judy Mikovitz and Dr. Martin Lerner both found that about 30-40 percent of ME/CFS patients have Lyme (and likely other coinfections).
Anyway, he is definitely having success. And certainly a lot of ME/CFS patients also have mycoplasma -- bart is less researched.
There was a paper in Medical Hypothesis that compared bartonella to AIDS in the way it affects the immune system, so I agree with you it is the "big one" in terms of immunosuppression and probably thus should be treated first before stem cell treatments. But taking arteminisin also seems prudent as a pretreatment, whether one has babs or not, for its antiviral properties.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I would personally recommend against embryonic stem cell therapy. I have heard good thing about adult stem cell therapy but embryonic stem cell therapy is fraught with problems.
Embryonic stem cell behavior is not predictable - I'm surprised no one has pointed this out to you.
PLEASE READ>
Researchers in China met with a disastrous result. Fetal tissue injected into a patient's brain produced temporary improvement, but within two years the patient developed a brain tumor and died. An autopsy revealed that the fetal cells had taken root, but had then metamorphed into other types of human tissue - hair, skin and bone. These grew into the tumor, which killed the patient.
A devastating result occurred at Columbia University's College of Physicians and Surgeons, and was published in the New England Journal of Medicine. In some of the patients, the implanted embryonic cells apparently grew too well, churning out so much of a chemical that controls movement that they writhed and jerked uncontrollably. Dr. Paul E. Greene called the uncontrollable movements developed by some patients as "absolutely devastating." He said, "They chew constantly, their fingers go up and down, their writs flex and distend. It's a real nightmare. And we can't selectively turn it off. No more fetal transplants. We are absolutely and adamantly convinced that this should be considered for research only."
Researchers at Harvard Medical School say ADULT stem cells may eliminate the need for EMBRYONIC ones. The researchers experienced a permanent reversal of Type 1 diabetes in mice by killing the cells responsible for the diabetes. The animals' adult stem cells took over and regenerated missing cells needed to produce insulin and eliminate the disease. The results hold promise for rheumatoid arthritis, multiple sclerosis, lupus and more than 50 other ailments.
Posts: 107 | From new jersey | Registered: Dec 2009
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CD57
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posted
i don't think this is the right place to debate what Kyla has decided to do.
Kyla's LLMD, also mine, is very well known for aggressive treatment and totally up on the whole bartonella/BLO thing. I'm sure he will have treated her for it if he thought it was a problem.
However, if one has a big problem with an immunosuppresant infection, how are you supposed to get over it if you've gone as far as you can with abx? I'm not saying that this is the case with Kyla, but I believe that several of the Lyme patients who have gone to India now (I think there are 20 or so) cited immune suppression as a big reason for going in the first place -- to get OVER the immunosuppressant infection.
Makes sense to me.
Posts: 3528 | From US | Registered: Apr 2007
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ukcarry
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posted
Good luck, Kyla, and thank you for deciding to blog about your experience. Hope it works for you,
posted
CD, I wasn't disagreeing with that at all. There was a case of an AIDS patient seroconverting to HIV negative after stem cells. It is clear that stem cells have the capacity to rebuild/reboot the immune system in some/many cases.
It does make sense, generally, to kill (or treat for awhile) as many infections as possible before stem cell treatments though. I have a book on stem cell treatments that states this -- and also states that taking antibiotics is not a conflict when one gets stem cells, but one should stop herbs during treatment.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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My comments regarding IV IgG and bartonella/mycoplasma were based on a couple of factors.
I went to one meeting of the NY neuroborelliosis support group back in 2007. About half of the patients there were receiving IV IgG from the NY neuro Dr Y. Despite what the NYU website says he does not really believe in chronic Lyme and definitely is not a strong believer in coinfections.
He did not believe hubby's F lab bloodslide or put any reliance in his SPECT scan from Columbia at that time. I also know of a recent patient who was not even tested for coinfections and later tested positive for babesia and for BLO or whatever on a Clongen bloodslide. This patient had had NO antibiotics and Dr Y wanted to do IV IgG rather than antibiotics. The patient is making remarkable progress on Lyme and babesia meds with another doc -- has not started bart treatment yet.
Hubby was also a patient of the other neuro Dr K in Connecticut who is big on IV IgG. He missed both coinfections of babesia and bartonella or whatever in hubby back in 2003.
Pretty sure neither of these neuros will clinically diagnose coinfections.
The other interesting observation is from a comment made by hubby's former LLMD in Missouri -- he said the lady LLMD in New Jersey (forget her name right now) had called him to discuss bartonella testing. At that time she was sending many patients to Dr Y for IV IgG -- she was thinking she was getting false positive test results on bart because 70 or 80% of her patients had positive bart tests. Not sure what lab she was using. The Missouri LLMD felt that the positive bart tests were probably accurate as bart is much more common on the East Coast.
Anyway, hubby's experiences have been that Factive raises both his RBC and WBC. He tried it a year ago for a month or two in various pulses. Then recently tried it again daily at half dose. This time by using the combo of Factive and Rifampin his bilirubin went back to normal also -- almost the first time this has happened in a couple of years. And his recent EKG shows that his PVC's and PAC's just disappeared.
Hubby is on 4 antibiotics and I also have him on numerous herbs, but with him it is very easy to see changes in bloodwork and symptoms when the meds are working that he is taking for bart, mycoplasma, BLO or whatever the mystery pathogen is.
Hope my explanation answers your question.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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Bea is hubby pulsing Factive and Rifampin now or doing them daily? What else is he on? I wonder if trying Tygacil, etc would be a good thing for him. I am glad for a breakthrough for you.
Re the stem cells - yep, undoubtedly it makes sense to treat as much as possible. But when you're say, three yrs in (like Kyla? not sure) and you're not where you want to be, stem cells at this juncture make sense.
I would like to hear more about the adult stem cells in Panama. Why are those as beneficial? Whose cells are they?
Posts: 3528 | From US | Registered: Apr 2007
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I'm glad to prompt this discussion...a lot of interesting insights! However, please understand, I am just letting you all know what I am doing and where you can learn more about my journey in case it interests you!
I am not really asking for help regarding other treatments I should try or whether or not you feel stem cells is the right option for me. I feel after much research that is IS the right option for me and I leave in a few weeks. It is a personal choice and it is my choice; I have already made it.
Josh: Thank you for your concern and the info you posted. There is much more to those stories; I encourage you to continue your research. Some of those issues have been addressed on www.heathcarehacks.com throughout Amy's blog.
Thank you again everyone for all of your love and support! Keep the positive vibes commin' my way!
posted
Good luck, Kyla! I admire the work you've done to come to this place and the motivation to do what it takes to heal. Blessings on your journey (I plan to check in on the blog, too).
Posts: 30 | From Massachusetts | Registered: Dec 2009
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posted
Hi Kyla ..It's encouraging to know about your endeavor to try out different approach - stem cell therapy. I'm from India and currently based out of CT, USA as my daughter is suffering from Lyme and co inf since last 5 years. WOuld you be able to share India doctor's details from whom you are going to get this treatment ? Best Wishes and Good Luck for speedy recovery. It would be great if you continue to share your progress and experience so that others can get help.
Posts: 25 | From CT, USA | Registered: Jun 2010
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sparkle7
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Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Bugg
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I wish you a complete recovery!!! Thanks so much for sharing...
Posts: 1155 | From Southeast | Registered: Oct 2005
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Abxnomore
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Yes, best of luck to you and I hope it proves everything you hoped for and more. Thanks for sharing with us.
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