Perhaps a cure

[steftremblay8283]

Hello everyone. This post is meant to be used as an inspiration to all it's readers who have lost hope or who remain hopefull for a cure. I am not what you woud call a flake, nor is my ex-wife, who was diagnosed in 1998. We travelled the long hard road that you are presently travelling, and P.S. (my ex-wife) is still travelling it.

Back in 1997, she began getting sick where she was hospitalised for 4 days with what doctors thought was a severe flu. High fever, aching pains, etc... Aprrox. one year later, she was showing tell tale signs of ALS. We attended Sunnybrook Health Centre in Toronto, where she was diagnosed with ALS. We got a second opinion, which remained with the same diagnosis. This was heart wrenching. The 1st doctor gave us some papers and told P.S. to get her life in order, travel and she would die in 2 to 5 years. P.S. being the stuburn (compliment) person she is, said that she wasn't going down with a fight. We have 2 beautiful boys, hence this statement.

We had heard about a Lyme disease specialist is Long Island New York but the name of J.J. Burrascano. The more we read about him, the more we liked what his Dr. was saying. In a nut shell, Dr. Burrascan says the obvious: ALS is a name they gave to a whole bunch of symptoms that no one knows what causes them. Except he has made a corrolation between the symptoms of ALS and Lyme disease. They are exactly the same. He says that Lyme disease is ALS, but that the medical community and government will not recognize this. He has actually been sued over this and won. Hats off to him.

Having done all this research and weighing our options, P.S. decided that she wanted to go see him. She did more research and found out that she could fly to Long Island N.Y. with an airline for a minimal fee. We flew to N.Y. and saw Dr. Burrascano. I can assure you that he is not a flake. He is a world renown Dr. in lyme disease. He got her to do a battery of blood tests to diagnose what she had. Sure enough, one of the tests came back positive for lyme. As a result, he prescribed P.S. a one year regimen of antibiotic
I.V. to kill the disease. Well, today in 2009, she is still alive.

You can e-mail me if you have questions about this post and I will be glad to answer you.

 

[Al]

You wouldn't be talking about Patsy would you? She's been here quite a while.

AL.

 

[tgif]

How long ago did she see Dr. Burrascano? How did she reach him? Or, can you tell me your e-mail address so I can ask more questions?
Thank you!

 

[Felicia38]

I thought the doctors had to rule out it being anything else before they could call it als? Do you have to ask to be tested for Lyme? We go to Emory tomorrow and I am just curious to know if I should be asking any specific questions?

 

[BethU]

Felicia ... you're right. I'm pretty sure a university clinic especially will make sure to rule out all possibilities.

But that is certainly a good question to ask: What other possibilities are there? Don't hesitate to ask any questions you think of.

I'm sure you know to do this, but take a list of meds with you and also jot down a medical history, as you always have to fill out forms. If I don't have something in writing, I usually forget half the stuff, or can't remember dates. It also helps to have a list of current doctors and their phone numbers.

Good luck!

 

[tgif]

We went to a university clinic that specializes in ALS and we had to PUSH to have a test for Lyme disease. Unfortunately, the result of that test we negative but they weren't even going to check.

 

[CB1977]

Does anyone know if these labs on the internet are reliable. I got tested for Lyme but my Dr. only tested me for one strain. Can anyone give me a heads up to which is the best to use?

 

[awieleba]

Igenex is the best

 

[Big Mike]

Don't Forget about Celiac Disease

Well, nothing is out of the realm of possibility with this disease. Still, it seems very unlikely that Lyme Disease could be the cause of all sporadic cases of ALS. I was diagnosed with ALS in December 2008--there are still a few pending tests left to do, but I have already come back negative for Lyme Disease, something that is not even present where I live in Montana.

However, I was out of state state twice (Oregon and Wyoming) in the past decade, so who knows? Also, we do have some ticks in Montana that can present Lyme Disease-like illness.

I did want to mention Celiac Disease as well. I had a blood test for the disease, and it came back negative, but those tests are often unreliable. There is some suspicion (but not verified) that it may be present in my Dad and Uncle, so I might try doing the gluten-free diet for awhile to see what happens. It's a long shot, but I know that occasionally Celiac Disease can present ALS-like symptoms, such as muscle wasting. I am more upper-motor neuron dominant, but I think it is worth trying.

 

[Phil M]

I thought the doctors had to rule out it being anything else before they could call it als? Do you have to ask to be tested for Lyme? We go to Emory tomorrow and I am just curious to know if I should be asking any specific questions?

Dr Glass does not buy the Lyme story. I have pulled hundreds of ticks off me in my life. I thought for sure I had Lyme. It still might be lyme. Dr G said lyme, or no Lyme..you still have als! He said the lyme test are accurate, and I know that is bull. Don't expect much by bringing it up with him. He will ask if you want a spinal tap, and thats not accurate either.

 

[Phil M]

Well, today in 2009, she is still alive.

But how well has she improved?