Stem Cell Treatment thoughts...

[Gigi]

Hi~ I had cord blood SC treatment on 4/10/08 in Mexico, 2 months following my Nerologist concerned with my stif shoulder put botox in it. I am a compiang patient but I should have been MORE protective of my SCTreatment. I developed Botulism symptoms, all my symptom returned! What to do? I can't do another round of SC till October, and at what cost, amazing this happened! My Nurologist mocked my concern of a paralyzed arm. I fear the spacisity when the Botox wears off. ... What would you all do? If I file suit I would most likely be blackballed from his group. A bump in the road I didn't expect. Your thoughts wecome...

[Kaci's Mom]

I don't have any answers for you, but I do have a question- Where did you go to have your stem cell treatment in Mexico????? Not that I'm an expert on botox, my child has CP but I always thought that was kind of an invasive way to treat spasticity- but that's just me. I am however very sorry to hear of the problems you are having.

[alex]

I was also wondering where you went for treatment and what condition where you trying to treat?

[hegy]

alex, click on the poster's name & then public profile, there you will find all necessary information

[barbara]

Hegy - The public profile does not tell us what company the member went to for treatment. I think that is what Alex and Kaci's mom are asking. I was wondering too.

[Gigi]

Hegy - The public profile does not tell us what company the member went to for treatment. I think that is what Alex and Kaci's mom are asking. I was wondering too.

Sorry, I forgot to say!! Stem Cell BIiotherapy gave me the treatment in Mexico off San DIEGO, CALIFORNIA. Check out their webpage...

Still learning your site, I orriginally responded to the Mom direct. I really want everyone to know...

[barbara]

I certainly am sorry to hear about your problems. I am not sure if you are aware that this forum has red flagged Stem Cell Biotherapy because many people are becoming ill after treatment there. They refuse to produce certification of purity for the cells they are using. The fact that you are now back to where you started is no surprise to me. Did a doctor examine you prior to treatment at SCB? Stem cell therapy is nothing to fool around with. All safety precautions must be in place. Were you given the protocol that you were told you would have? Were you warned not to have botox? I also would be concerned as to why your shoulder was so stiff. Many people who went there are now demanding refunds and it may be that you should do the same. I would certainly seek opinions of other stem cell doctors because even with symptoms of botulism, this to me would not indicate that the entire stem cell therapy was negated. Something isn't right here.

[hegy]

sorry for not making it clear that I was referring to the condition info of the poster, not where they received their treatment

[Gigi]

I certainly am sorry to hear about your problems. I am not sure if you are aware that this forum has red flagged Stem Cell Biotherapy because many people are becoming ill after treatment there. They refuse to produce certification of purity for the cells they are using. The fact that you are now back to where you started is no surprise to me. Did a doctor examine you prior to treatment at SCB? Stem cell therapy is nothing to fool around with. All safety precautions must be in place. Were you given the protocol that you were told you would have? Were you warned not to have botox? I also would be concerned as to why your shoulder was so stiff. Many people who went there are now demanding refunds and it may be that you should do the same. I would certainly seek opinions of other stem cell doctors because even with symptoms of botulism, this to me would not indicate that the entire stem cell therapy was negated. Something isn't right here.
Something to think on. I sounded like a "commercial" in my last post. I just found it all too simple and was excited. Now what to do? Wait and see.

[Gigi]

Something to think on. I sounded like a "commercial" in my last post. I just found it all too simple and was excited. Now what to do? Wait and see.

I will do another SC round- I didn't protect the transplanted cells, it is my fault. Pick youself up and brush yourself off as they say. Protect your inplant!

[barbara]

I don't understand why you are blaming yourself. Do you have some kind of proof that botox would effect your stem cells? I think you need to do consultations with other doctors outside of where you originally went. Don't throw good money after bad is my advice.

[Kaci's Mom]

I don't understand why you are blaming yourself. Do you have some kind of proof that botox would effect your stem cells? I think you need to do consultations with other doctors outside of where you originally went. Don't throw good money after bad is my advice.

I told Gigi my thought on that was- since Botox is ACTUALLY a "poison", it may have killed the stem cells? Also, from my knowlege of the use of "botulinum toxin", (Botox being the comercial name) it can have an unfavorable reaction if OTHER medications are being taken.

[Gigi]

I told Gigi my thought on that was- since Botox is ACTUALLY a "poison", it may have killed the stem cells? Also, from my knowlege of the use of "botulinum toxin", (Botox being the comercial name) it can have an unfavorable reaction if OTHER medications are being taken.

I know, I know I trusted my Neurologist. Well , I had no support back then, now I wonder about a redo with SCBiotherapy... I know the reaction happened after the Botox for sure. I was better after treatment with SCB, sloly but surely. I don't know... My Neurologist didn't even know about it but must feel the squeeze of patients choosing other means of medicine?

[barbara]

Gigi - I e-mailed a couple of knowledgeable stem cell doctors to see if Botox could do anything to damage the stem cells you received. I will let you know what I hear. I am not a doctor, so I can't say one way or the other. I think however, you need to consider that you may be experiencing what others who have gone to SCB have experienced. They have initial response and improvements to the treatment, but then this fades and they are right back where they started or in some cases worse. There are some serious allegations against this company. Did you receive a certificate for the purity of the stem cells you got? Were you given post stem cell advice? If not, you might consider pursuing a refund as I mentioned earlier. Did a qualified medical doctor examine you prior to treatment? I would not take any of this lightly. It does not matter if you signed a waiver prior to treatment if your health has been jeopardized in any way or if things were misrepresented to you. This includes not getting any post treatment instructions. How would you know not to get a botox injection if this proves to have been something that obstructs your stem cell engraftment? You are not a doctor are you? I am not trying to be hard on you, I am simply telling you that to return to a clinic where the results have done you no good (and this includes not giving you proper instructions) makes absolutely no sense to me. In fact, without the certification, it could prove to be downright dangerous in my opinion.

[barbara]

Dr. Payne PhD. was one of the doctors I asked about botox as he is very knowledgeable as to what is going on as far as treatment in Mexico. Following is his reply:

Botox is a neurotoxin which, when improperly used or when used therapeutically but in high dose form or in frequent low doses, might influence some aspects of stem cell activity (following a treatment). A more pressing question is did this MS patient even get a true stem cell treatment? (See below)

With regard to stem cell treatments in Mexico: I have been dialoging off and on for some time with Ministry of Health officials, especially in the state of Baja. There has been a proliferation of stem cell clinics along the US-Mexican border, as you are undoubtedly aware. Apparently many docs are taking "quickie" (often weekend) training courses on how to extract cord stem cells, then opening their own labs and proceeding to process cord blood and treat patients. This is truly reprehensible, as it is unlikely that these makeshift labs come anywhere close to having the equipment, qualified personnel, and procedures in place to properly extract, produce and culture cord stem cells. Actually there is some evidence that what is occurring more-often-than-not in these "labs" involves just spinning down cord blood, removing some components and administering this mish-mosh to unwitting patients. In addition, I was told about one Mexican doctor was acquiring cords from some local hospital and literally milking blood out of it, then putting this mess in an IV bag and dripping it into patients (He didn't even have a valid medical degree and is on the run now from Mexican law enforcement officials). And yes, some of these patients wound up very ill -- some in ER back in the USA!.

People considering going to Mexico or any other foreign country for stem cell therapy should exercise caution in terms of accepting website statements or even documents concerning stem cell sources or affiliate labs (Many enterprising souls, I've been told, create certification documents and even faux licenses such using a PC and various sophisticated software programs such as Adobe Photoshop). My suggestion at this point-in-time for prospective patients is this: Contact the Ministry/Department/Bureau of Health in the country housing the clinic or hospital you plan on visiting and ask about the status of same in terms of licensing, complaints, problems, internal labs and their certification, etc. Take nothing for granted, as charlatans and cons abound who are adept at hoodwinking even some experts.

Anthony G. Payne, Ph.D.

[Gigi]

Gigi - I e-mailed a couple of knowledgeable stem cell doctors to see if Botox could do anything to damage the stem cells you received. I will let you know what I hear. I am not a doctor, so I can't say one way or the other. I think however, you need to consider that you may be experiencing what others who have gone to SCB have experienced. They have initial response and improvements to the treatment, but then this fades and they are right back where they started or in some cases worse. There are some serious allegations against this company. Did you receive a certificate for the purity of the stem cells you got? Were you given post stem cell advice? If not, you might consider pursuing a refund as I mentioned earlier. Did a qualified medical doctor examine you prior to treatment? I would not take any of this lightly. It does not matter if you signed a waiver prior to treatment if your health has been jeopardized in any way or if things were misrepresented to you. This includes not getting any post treatment instructions. How would you know not to get a botox injection if this proves to have been something that obstructs your stem cell engraftment? You are not a doctor are you? I am not trying to be hard on you, I am simply telling you that to return to a clinic where the results have done you no good (and this includes not giving you proper instructions) makes absolutely no sense to me. In fact, without the certification, it could prove to be downright dangerous in my opinion.

Thank you for your post. I don't expect anyone to hold my hand but I felt abandonded and confused, know what I mean? I feel strongly about stem cell treatment and do believe it is the "new medicine, and path beyound what is available itoday."

[barbara]

Gigi - Jeannine and I wrote the book on abandoned and confused. We both got seriously ill after treatment and found there was no one to talk to. We had no clue what to expect. We started this forum soon after our own treatment and we really did write a book, "Stem Cell Pioneers" telling of what we went through and the story behind the Pioneers. Again, I would urge you to fight for a refund and seek treatment elsewhere. I am like you in that I refuse to let a bad experience dampen my enthusiasm for stem cell therapy. I am just much more knowledgeable and cautious then I was back then.

[gailvel]

When did that happen? My wife had treatment in May in Grand Cayman with SCB and up till then we hadn't heard anything negative about the group. How concerned should we be about them? We have experienced some improvement and we're just coming up on the three month point now, in fact I was coming on line today to give an update on Gail's condition. Do we know how many people are going after refunds?

[Gigi]

When did that happen? My wife had treatment in May in Grand Cayman with SCB and up till then we hadn't heard anything negative about the group. How concerned should we be about them? We have experienced some improvement and we're just coming up on the three month point now, in fact I was coming on line today to give an update on Gail's condition. Do we know how many people are going after refunds?

I really don't know, I lost my gains due to a conflicting injection of botox. I know they don't follow their past clients well, but I have heard SC is really slow, slow I maye jumped at anther treatment too quickly? Maybe not -what improvements has your wife seen? What grounds do you have for a refund?They did everything they promissed to me. My hopes high for something, anything not previously offered or looked at, of course...

[barbara]

The people who are asking for refunds (and rightly so) were not given the protocols they were promised prior to treatment. Were you told how the stem cells would be administered for your wife? Was it as you expected or was the protocol changed once you arrived? Others are angry because they have become very ill after treatment. This can be caused by contaminated cells, although it is difficult to prove. One of the owners was fired by the other owner and this lends itself to a lot of confusion also at SCB and undoubtedly more legal problems. The CEO has been trying to work through another company that he would refer patients to and yet carry on business as he always has. Why? This makes no sense unless it is to cause the appearance that a person is not getting treatment from SCB, but from another company when in fact it actually is SCB. There are also allegedly some people who were told by the CEO that he was a medical doctor and he is not. These are very serious allegations. Keep in mind, I said allegations as nothing has gone to trial to my knowledge at this time. My opinion is why get involved in treatment somewhere that such problems even exist? There are many companies giving good, safe treatment and at a lesser cost. There is still no one to my knowledge that has received a certificate of purity for uc cells from SCB. This is a safety issue of the highest caliber. The Red Flag is waving more than ever as far as I am concerned.

[gailvel]

Hi Gigi,

I did not say I was going for a refund, or that we had grounds. I was just curious how others are doing. My wife has actually made some improvements in the last 3 months. She is more focused mentally, has stopped the cloning (rapid seizures) in her legs almost completely, and we are encouraged by her increased ability to get to the bathroom in time. The people we saw in the Caymans seemed to care about how we were doing, as have the people in California we've been in contact with.

Hi Barbara,

I will update you next week on the result of my conversation with one of the office ladies at SCB yesterday. She said it was no problem getting a certificate of analysis for the particular dose my wife was given, but the person who could send it, a Casey, was on vacation this week. I'll find out next week if this was just a delay tactic, but she did seem sincere.

My wife was given, as near as I can tell, exactly the protocol that had been described to us beforehand. She did suffer after the shot from some wicked side effects, but we had been told to expect that. Within 24 hours she was back to where she'd been before the shot, and has shown some improvement since (see above). I will let you know how the search for a certificate goes from here out.

Also, I haven't been ignored at all by these people at all. They promptly return all my messages, and have been very pleasant. I'm not telling you to take the red flag down by any means, we all need to be wary, but it would be unfair if I did not let you know that we have had a mostly positive experience with them.

Brian

[Mysty119]

Glad to hear it!!!! It's always nice to know that people are being treated as they should be treated!!!

[alex]

Gailvel,

What type of stem cells did your wife receive? How were they administered?

How long after the treatment did she see improvements?

Thanks

[gailvel]

She got:
50 million mononuclear
50 million oligodendrocytes
50 million endothelial
10 million astrocytes
5 million cd34+
5 million CD133+

70% in an IV drip, 30% injected in 3 shots at the top of her spine.

She seemed to be thinking clearer in the first few weeks, just recently her incontinence has improved, the leg cloning stopped after the first week, came back for a while and has been gone again for a few weeks. We're trying to get her in-hoe PT to increase the chances for improvement. Good luck, Alex.

[barbara]

Brian - Glad to see that your wife is having some improvements. What was the reasoning that she had side effects in the first 24 hours? I was also told that collapsing at the time of infusion was normal and found out later that this is absolutely not true. It should not happen. I literally thought I was going to die. The Casey you refer to is the CEO of the company. I will be elated when you get your certification for purity as no one to my knowledge has ever received one from SCB. Yours will be a first. Is the certificate of analysis the same as the certification for purity? I am still waiting for a receipt for tax purposes and I went on April 7, 2007. Perhaps, the office is just a little behind. Also, the Cayman location is closed as is Peru. I am not encouraging anyone to ask for a refund either if you feel that you got what you paid for and that the protocol was followed and that Casey Nabavi did not represent himself as a medical doctor to you. I would personally never go to this clinic again nor recommend it to anyone. The red flag is flying high as far as I'm concerned.

[Gigi]

Hi Gigi,

I did not say I was going for a refund, or that we had grounds. I was just curious how others are doing. My wife has actually made some improvements in the last 3 months. She is more focused mentally, has stopped the cloning (rapid seizures) in her legs almost completely, and we are encouraged by her increased ability to get to the bathroom in time. The people we saw in the Caymans seemed to care about how we were doing, as have the people in California we've been in contact with.

Hi Barbara,

I will update you next week on the result of my conversation with one of the office ladies at SCB yesterday. She said it was no problem getting a certificate of analysis for the particular dose my wife was given, but the person who could send it, a Casey, was on vacation this week. I'll find out next week if this was just a delay tactic, but she did seem sincere.

My wife was given, as near as I can tell, exactly the protocol that had been described to us beforehand. She did suffer after the shot from some wicked side effects, but we had been told to expect that. Within 24 hours she was back to where she'd been before the shot, and has shown some improvement since (see above). I will let you know how the search for a certificate goes from here out.

Also, I haven't been ignored at all by these people at all. They promptly return all my messages, and have been very pleasant. I'm not telling you to take the red flag down by any means, we all need to be wary, but it would be unfair if I did not let you know that we have had a mostly positive experience with them.

Brian
Hi Brian, Sounds like you have really good improvements. I too had the same strides as your wife for 2 months, it went away after another treatment. My mental clarity disipated and spacity returned. Now, Iwill have to do a again! Timing is bad, times are tough, unbelieveable... Everyone should learn from my mistakes, protect your stem cells from conflicting meds. My double vision returned too. I am sure the key is kere for MS, if nothing else a way to help symptoms. Keep us posted.