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Jan 23, 2019 · Cerebral Amyloid Angiopathy and Seizures in Stroke & Cerebrovascular Diseases

My wife has CAA and doctors are very uninformed about CAA. You have to keep looking for an informed doctor. My wife takes Keppra and it works for her so far. It's been 2 years and she has had 5 seizers which required a hospital stay. The seizers are closer together and now we are in the window for another seizer. But she has increased her Keppra and she also takes CBD when ever she feels funny (numb ness in the arm or broken vision) Her CBD is Elixnol Liposomal CBD. I will try to keep you informed about her journey, I can't say progress because we don't see this being cured.

Dec 12, 2018 · Cerebral amyloid angiopathy in Stroke & Cerebrovascular Diseases

The most important thin is if you have CAA then don't take blood thinners. We are all different and have bleeds in different locations that cause different problems. So first get a test to confirm what you have and read all the previous post for advice. Good luck

Dec 11, 2018 · Cerebral amyloid angiopathy in Stroke & Cerebrovascular Diseases

I share your caution about stem cells and at the time I did my best to find a cure or at least something to extend my wife's life span. The reason I chose stem cells is that a Biotech company from Korea went thru clinical studies in Japan and has been given permission to do stem cell treatments to cure Alzheimer's by the Japanese version of the FDA in Japan. Their plan of attack is to inject the body with 200 million stem cells every two weeks for 10 treatments. To do this you need to culture and grow your own cells and then reinfect them into your body. The FDA will not allow you to do this, because they say that if the stem cells are altered in any way then they are a drug and need to be approved by them. Thats why we have to go to Mexico to have the injections. The biotech company is one of a few companies who can culture and grow cells in the USA. Also this was the last ditch effort on our part because at the time we did not know of the program at the Mayo and had nothing else to loose. We felt that if the culprit is amyloid plaque, the stem cells won't care where the plaque is and could just go after the plaque in her arteries. We are closing in on the window that the stem cells start to take effect and if she shows improvement then I will post her good news.

You are right that many stem cell companies are scam's but that is more likely because of the restraints by the FDA. We found a way to get around it. I am sure that there is much stem cells can cure and we hope CAA is one of them.

I am glad to hear of your progress and I printed this for our doctor. The question I am asking is what help can Mayo offer? Everyone I contact said that know very little about CAA and that there is nothing they can do. I am hoping that someone will give me more details about the treatment's Mayo has to offer. Also which doctor they use and we will make an effort to visit him/her in the future.

This is a great forum and I look forward to more replies.

Sincerely

Terry

Dec 10, 2018 · Cerebral amyloid angiopathy in Stroke & Cerebrovascular Diseases

@surf362, Thanks to many of you I hope this reply and comment will reach you. My wife had an epileptic like seizer in Singapore 6 years ago and five years later she had another one. From the las one we found out that she has CAA. Our doctor said "there's nothing I can do and you just need to home and prepare to die". He really said that. So I started looking for a cure that was out of the box. We tried chelation, new blood therapy, and the latest is Stem Cells. We had the stem cells two months ago and are hoping it will work. (I will let you know if the do or don't). The problem I have now is that no one will tell me if any treatments will work. I live on the left coast and all the Mayo hospitals are on the east coast (exceptAZ.) But everything will cost a lot to get the same option. Is there a cure or treatment that justifies the cost?

We tried stem cells because a bio lab from Korea has received the go ahead to offer a cure for alzheimer's in Japan by their version of the FDA. An I believe that the loading of the body with stem cells helps rid the body of amyloid plaque and for my wife may help cut down on the plaque as well as heal some damaged arteries.

Your comments are in some cases very hopeful in that my wife seems to bounce back after each seizer, but I am still very worried.

I hope we can use this as a way to help each other in finding new out of the box cures or therapy's.

Don't go calling just any stem cell company, ask me first. Some can only do what the FDA allows them to do. I used a US based lab but had to have the stem cells injected in Mexico (Cancun). We tried to replicate the Japan method. I believe we should see results in 4 to 6 weeks.

Keep your minds open and keep fighting.

Dec 10, 2018 · Cerebral amyloid angiopathy in Stroke & Cerebrovascular Diseases

I live on the west coast and was ready to visit a Mayo hospital anywhere in the country that could help my wife with treatment. But I believe that no one can help and I should not spend a lot of money just to get the same results. Am I wrong?