Aids Cocktail trial

Status
Not open for further replies.

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Hi Bugsy,

I'm pretty familiar with it. When reports surfaced about the AIDS cocktail in 2003 I contacted Dr. Turnbull and Elizabeth Grandbois. I was sufficiently encouraged to try my own trial of one. I obtained the list of AIDS drugs and dosages and told my neurologist about it. He checked it out with AIDS people in his hospital and gave me the ok to try it. It is not covered by insurance for ALS so it cost me about $1300/month. I tried it for a couple of months and in addition to making me nauseous all the time, I felt my progression was actually speeding up so I stopped with about $500 worth of cocktail remaining. Since then I was in contact with one of the people involved with administering the trial and was told that no one else had responded like Grandbois. I have never seen the results written up formally. Researchers don't like to publish negative outcomes. My suspicion is that Elizabeth is simply a slow progressor but of course I don't know. She is doing great work for ALS awareness and fund raising across Canada.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
My ALS specialist Dr. Michael Strong (one of the top ALS specialists in Canada) summed up his opinion of the AIDS cocktail as a treatment for ALS as follows:

Given the choice between the AIDS cocktail and black plague, a PALS would be better off choosing the plague.
 
Last edited by a moderator:

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
rcharlton said:
My ALS specialist Dr. Michael Strong (one of the tops ALS specialists in Canada) summed up his opinion of the AIDS cocktail as a treatment for ALS as follows:

Given the choice between the AIDS cocktail and black plague, a PALS would be better off choosing the plague.
Ha! Ha! Ha! I've never had the plague but given my experience with the cocktail, I'd agree.
 

Bugsy

Member
Joined
Jan 20, 2006
Messages
21
That's too bad.Every time I get my hopes up!Thanks for your replies.I think I'll pass on the plague.ALS is enough plague for me.I guess that's why I can't find out the results of the trial
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Yes it's funny how the media doesn't get to cover the trial and stem cell failures because of non disclosure agreements.
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
We also inquired about the aids cocktail when it was published. Dr. Strong told Henry that he was fairly healthy then and that it would not be a good option for him. He also said that the meds would be equivalent to chemo and that he would probably get sicker. He told us that he thought that the trial was bullcrap, and he knew the doctor personally that was conducting this trial. Who knows, what works for one person is lethal for the next. I did read somewhere that Elizabeths als was progressing, so, she maybe had a short term remission from this cocktail, but in the long run did not cure her. It would have been nice to think that this trial would have had positive results, but still there are no positive results. As Al said, they do not publish negative results in the media, I wonder why.

Carol
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Carol Deboer said:
... I did read somewhere that Elizabeths als was progressing, so, she maybe had a short term remission from this cocktail, but in the long run did not cure her...
Some background on this. Elizabeth tried it because at the time, a few AIDS patients with symptoms strikingly similar to ALS had their symptoms reversed with the cocktail. Turnbull thought it was worth a shot with ALS and Elizabeth Grandbois was the first patient. While on the cocktail, her progression was very slow compared to most PALS so Turnbull thought it was worth testing it on other PALS. No one expected a cure and Grandbois recognized that she progressed even while taking it. The hope was only to slow things down. In hindsight it failed but I applaud the courage of Turnbull and the trial members for testing it.
 
Status
Not open for further replies.
Top