Stem Cell Treatments

Faith,Hope,Love

DH's dementia has proceeded at a very rapid rate.  He had gotten to the point that the neurologist put him in home hospice care.  Our family doctor (not the neurologist) insisted that there had to be something causing the dementia to proceed so rapidly.  He was disappointed that the neurologist wasn't willing to research this a little further.  He felt that the neurologist was washing his hands of the case by placing him in hospice care.  So, our family doctor (who does a lot of research and continues to keep himself abreast of new treatments) offered stem cell treatments.  He said I may see some improvement in 1-2 weeks.  If I didn't see any improvements within 6 weeks, we would know it didn't work.  And there would be no need for additional treatments.  I felt that I needed to try this in case it could have a positive outcome.  It's been almost 2 weeks since his treatment & I'm miserable.

Prior to treatment, he was docile and manageable.  The whole house was stable.  I could easily handle him.  Life had settled into a more normal routine.

Now, he's pestering me for the car keys so that he can go shoplifting (he thinks everything is free), getting uncooperative again and wanting to do house repairs (that he can't and shouldn't be doing).

I'm miserable.  I know I did the right thing in getting the treatments for him.  Maybe he'll get even better, and this phase will pass.  I sure hope so.  I got so used to him being manageable.  Life had just gotten a lot easier.

dayn2nite2

I think your family doctor did you a disservice.  How much money was this and did this doctor have any financial interest in where the treatment was given?

M1

day2nite is exactly right on this one, this is BS, shake oil, waste of money, and ought to be illegal.  Don't do it.  Ask to see the studies that document success (there aren't any).

Faith,Hope,Love

The treatment was $6000 and the treatment was performed in his office.  I guess I was silly.  And now I have an unmanageable DH.

dayn2nite2

There's nothing "silly" about it - you followed an opinion from someone you trusted who turned out to be untrustworthy.

First, I would cut all contact with this person and find another family doctor.  

Second, no matter who says anything, there is no cure, there is nothing proven to improve dementia.  Do not believe anyone who says they have been doing research (the only research this person did was how much money they could get out of you) and has some miracle diet or treatment.

Next, contact your neurologist and tell them what is going on and be honest about him having undergone this treatment.  If the neuro has no ideas, then I would look for a geriatric psychiatrist to take him to for the behavior.

I would report him to the Board of Medicine in your state, but that's just me.

Faith,Hope,Love

The neuro is out of the picture since he's in home hospice care.  So, I would have to contact the hospice people.  They increased his Seroquel and gave me some Lorazepam to calm him down.  I gave him one about a half hour ago.  So, hopefully it'll help.

Faith,Hope,Love

I contacted hospice since he's still acting out of control.  They had me increase the lorazepam.  I also told them about the stem cell treatments.  They think that's the cause, as do I.  He didn't start getting so wacky until he had the treatments.  The nurse I spoke with said their doctor will probably tell me not to give him anymore treatments.  Which, I wouldn't anyways.  But, at least she said this wouldn't kick him out of hospice.  I feel so stupid.  But, I thought this might help him.  I guess I was wrong and may have made things worse.

Josie in Podunk

I just want to send some big hugs your way. 

You acted in good faith and with a good heart…I am not so sure about the primary doc.

Trust your hospice folks…they have years of experience.

And, more hugs, cuz I think your kind heart really needs them right now.

Gig Harbor

Is your family doctor a naturopathic doc by any chance. I would write him a detailed email of how your husband is now behaving and I would ask him to send you pictures of the vials the stem cells were in. Just say you have another person who is interested in what he was actually given. He may offer you some money back.

.

Faith,Hope,Love

Thank you LostinPodunk.  I really need the hugs right now.  I feel awful.  

Gig Harbor the doctor is an MD and integrates his practice with holistic medicine.  Good idea to let him know how DH is behaving.

Jo C.

https://tinyurl.com/4hsdwazw  

https://www.alz.org/media/documents/research-using-stem-cells-statement.pdf

Jo C.

Faith,Hope,Love, you did nothing wrong and you were not, "silly."  Please do not blame yourself; you did your very best on behalf of your husband relying upon the advice of your husband's physician.  You had no way to know that this was not a proven treatment and not even an FDA approved treatment.   I would question that the physician knew this and wonder if he communicated that to you. 

That a person does a lot of "research" only counts if said research is done within the sphere of credible, proven and approved science especially when it comes to treating human beings.

FHL, I am truly sorry for the negative outcome that has been the result and also that you had to spend $6,000 for one treatment. 

I am including some links; one from the Alzheimer's Assn. regarding their standing regarding stem cell treatment for dementia and the other from the PEW group that also sets forth some of the negative effects and other information.  This perhaps will be helpful for you in understanding what happened that you may well not have been aware of.  There are many different types of stem cells that come from multiple different sources and are different from one another; the links describe this.  There have been no credible in-depth studies regarding credibly run testing re stem cells "success" in treating dementia. A few small rat studies showed "some" changes in rat brains, none of it highly useful and animal experimentation cannot be translated to human beings out of hand. 

Stem cell infusion is provided at over 500 for profit private "clinics."  It has become a lucrative business.  I have even seen TV ad/informercials on late night or weekends touting their sales of stem cell infusion for a variety of conditions; none of it FDA approved.  When you have time to read, the following links will give some insight:

From the Alzheimer''s Association:

 

https://www.alz.org/media/documents/research-using-stem-cells-statement.pdf

 

From the PEW group:

 

https://tinyurl.com/4hsdwazw  

 

NOTE:  Please try not to blame yourself and remember that you were doing your best based on the recommendation of your husband's physician.  Also, by coming here to openly share your experience, you have graciously helped to educate other Members and also those who do not join but "Lurk" to read, there are many caregivers who do just that.  You are providing important information and we thank you for that.

It is good you have Hospice to assist and reach out on your behalf and to support you too.  If you are troubled, you can contact their Social Worker and also, if you are troubled and need to talk to someone any time of the day or night even on a weekend or any holiday, the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at, (800) 272-3900.   There is no fee for this. SImply ask to be transferred to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics; they are good listeners and good support.

Be kind to yourself and please let us know how you and your husband are doing; you know we care and we will be thinking of you.  With warmest of thoughts being sent your way,

J.

M1

FHL, in my previous post i did not intend to be critical of you or make you feel bad, i am just outraged that such scams go on and are allowed to go on. If you have the energy, i would report them, perhaps to your state health Department. Doubt that you can get your money back, but you might prevent it happening to anyone else.  I'm so sorry and understand the despair of not being able to help your DH.

Ed1937

Do not blame yourself for what happened. The best any of us can do is what we think is best at the time we make decisions. That's exactly what you did, and you can't do any more than that. 

I wonder if it might be worth contacting a medical malpractice lawyer. If you do, I'd be very interested in what they had to say. 

Faith,Hope,Love

I want to thank everyone for their comments.  You helped me when I was feeling helpless and hopeless.  DH is doing fine and I'm feeling better.  I think he just had a day where he was really wound up.  The Hospice Chaplain came out today and spent considerable time with him.  He noticed that DH is a very high energy and creative person.  He gave me some ideas as to how to channel that energy so that he could expend it in a more constructive way.  So, I'll try them and if they work post here.  It may help someone else.

Jo C. Thanks for the post and the links.  You cleared up a lot of things for me.  And thank you for your kind words.

M1. I know you didn't intend to be critical and there are no hard feelings on my end.  I understand why you were frustrated.  Thanks for being there for me and honestly expressing your feelings.  I appreciate that.

I cherish each and every one of you.  You have all helped me so much and I consider you all family.  I've learned a lesson from all of this, and I guess that's what life is all about.  It's a continual learning process.

Marta

Faith, Hope, and Love:  I understand your desperation. 

I spent beaucoup $$$$$ on therapy with limited scientific evidence for my EOAD husband because we had exhausted all other options - had even been through (failed) clinical trials!

And I’m a medical professional…

Faith,Hope,Love

Thanks for your comments, Marta.  That makes me feel better.  DH is late stage and on home hospice.  I guess I was hoping for a miracle.

Michael Ellenbogen

I live in MD and if you would like I can help to try to get your money back. I hate crooks like that.

Jo C.

To quote Alexander Pope:  "Hope springs eternal in the human breast . . ." and it really does.  We love deeply, we care deeply, we are the protectors, we are the providers of all that our Loved Ones cannot do for themselves.  It is our nature.  We do everything possible and thensome leaving no stone unturned, seeking, striving and hoping and hoping . . .

J.