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Johnismybrother 12-31-2011 08:36 AM

ALS, Lyme, heavy metals
 
My brother has been treated with Lyme disease, heavy metals and the dr. Are diagnosing with ALS. The other diseases mimic ALS, but they won't look at those. We are at UCLA. Has anyone had this experience? If so, please advise :confused:

Sidekick4ever 03-29-2012 04:41 PM

Re: ALS, Lyme, heavy metals
 
[QUOTE=Johnismybrother;4902118]My brother has been treated with Lyme disease, heavy metals and the dr. Are diagnosing with ALS. The other diseases mimic ALS, but they won't look at those. We are at UCLA. Has anyone had this experience? If so, please advise :confused:[/QUOTE]

Hello,

I noticed it has been several months since you posted. My brother was diagnosed in 2007 with ALS. He went to his doctor and the doctor said he suspected ALS but to be sure referred him to a specialist in Houston. The specialist confrimed the orginal doctors thoughts. Of course our family immediately jumped on line reading everthing about it. We all thought it has to be Lyme's disease. They live in the country, lots of trees and animals. Nope the doctors were sure! Now here we are almost exactly 5 years later. He progressed exactly the way they said he would. He is now close to the end of his journey. I've seen a lot, learned a lot and wouldn't wish this on anyone but my brother made it so hard on himself. He refused so many things. Since his diagnosis he hasn't step foot into a doctor's office. He never went back. Hospice stepped in a couple years ago but he only lets them do limited things to help. They basically come once a week and check his lungs and other vitals.

Good luck to you and let me know how it turns out.

Johnismybrother 03-30-2012 04:33 PM

Re: ALS, Lyme, heavy metals
 
Hi, thank you for sharing. We just went to the mayo clinic in Az. The neurologist confirmed ALS as well. We also went to barrow in Scottsdale. Another confirmation. He had the EMG. He is in a skilled nursing facility in AZ. He is also on a respirator now. We are waiting for something to open up in CA. My brother is very hopeful that the rest of his days are independent as possible and he has a good quality of life. Unfortunately , we are constantly hitting road blocks with Medicare and insurance to cover care and assistive devices. He has a great family and he has a good attitude so far. Tell your brother there are a lot of resources out there. We have had a lot of positive responses from the ALS Association. Register your brother and get involved. This disease is a wicked disease.

Sidekick4ever 04-02-2012 09:53 AM

Re: ALS, Lyme, heavy metals
 
I am so sorry to hear that. Yes, it is a wicked, wicked disease. The ALS Association has been great & so has hospice. My brother has received alomost all of his equipment from hospice.
Good luck to you and your family. Sibling love is an amazing thing. My brother was always my protector and now I want to protect him.

Jenny1267 04-30-2012 07:56 PM

Re: ALS, Lyme, heavy metals
 
My husband was 40 when he was dx., he lived 5 years with the disease. He too refused to be seen by more docs, prodded poked and told he was going to die. One needs hope to live and the cruelty of the disease and sometimes lack of compassion on the part of the neurologist makes it hard to go back for more of the same. We lived in Maine and he also did have lyme disease.. so we hung our hats on lyme and held onto hope. My husband shielded himself from those that pitied him or acted like he was going to die.. we treated him as normal as possible. I am sorry that it is hard for your brother, but my husband played the denial game and we went right along with him... I am not sure if it was the right thing to do.. but it is what he seemed to want and it gave us fairly good quality of life until the very end. I don't think hope is ever bad...and as we were told by one Boston Harvard grad neurologist.. there are a very few .. like single digits that have been documented to have it and then it reverses for some reason. THe body heals itself.. turns on or off something.. who knows. but if a few have had it happen... then there is always hope. After all.. at this point what does anyone have to loose? I remember at the time there was a country song.. "live like you are dying.." and before that was Creeds.. "hold me now I am six feet from the edge and I am thinking maybe 6 feet ain't so far down." I could not stand listening to them... although it may be true.. when you are the one staring into the abyss you need all the love and support and prayers and positive energy you can get. The fight to stay alive.. the adjustments that it takes.. the utter unfairness of all of it.. it is his right to be angry. It is his right to be scared...in the end.. no matter what happens love does carry through. Sometimes it takes an inordinate amount of patience. ... even will.. but you have to remember this is his experience.. he feels trapped.. he is panicking. No matter how much we love those who are suffering.. we cannot truly understand their inner thoughts or where they are drawing their fears.. or their courage from. I wish you all the best.. I watched it tear my children apart.. I watched them fight with each other and me and blame God. At a time when a family needs to be united.. needs love.. they are really put through the wringer. Try to recognize it.. try to control and try to "will" peace... at least within yourself. You can never go wrong with gentleness and love. Realize that all the hurt and anger and pain is not from a good source.. don't give it more power than it already has. I will keep you in my prayers.. and your brother, mother and family. My sincere best to you.. you are being a good sister.


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