Alternative or experimental treatments that do not work
 

Alternative or experimental treatments that do not work

i copied this from obt and posted it here, agios started this so please share with us your alternative or experimental treatments if you have any.
thanks
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Newly diagnosed PALS can benefit from veteran PALS who have tried alternative or experimental treatments without beneficial results and are willing to speak out about their experiences.

For example, I tried Buo Nao Gao or BNG tea without any benefit and stopped using it. I even considered going to China for Dr. Huang's fetal tissue implant proceedure, but after reading about other brave PALS that had gone before me and experienced no benefit and were thankfully willing to inform their fellow PALS, I decided to forego Dr. Huang's proceedure.

Because of PALS that were willing to speak up I was able to take the money that I would have spent on a trip to China and instead spent it on a communication device, a ceiling lift, handicap van, ramps, etc.

This is an area that we veteran PALS can make a difference!

Peace, Love and Energy,

Agios

Hi, Agios
..Thanks for starting this thread. I posted the same thing at the TDF forum on a similar thread....my husband is a 7 year veteran of alternative therapies...
Gary tried,....Creatine, Minocycline, Vioxx, Celebrex, Buspar , Melatonin,Vitamin E mega dose, Coq10 mega dose, Alpha lopic acid, DHEA, SAME,NAC, high dosages of vitamin C..with no adverse reactions ..but zero benefits...all were known by his physician infact per his request and their consent he was prescribed them and tried them...but after taking all diiferent times for over a year and it many cases two years or more ...alone and with various combinations.....none had any apparent benefit...

He also tried the Nimodipine cocktail,with Minocycline and Rilutek under very close supervision by his ALS Specialist ...but after adverse reactions stopped after two months..with a feeling of malaise and continual blood pressure drops..

Lutimax..he tried as well.. with no apparent benefits..

Mirapex..open label clinical trial..dropped out of after a month..upset stomach and malaise dangerous for him with severe Bulbar impairment...

ITGG.. intrathecal gamma globulin 20 injections into the spine over 3 months in San Juan Puerto Rico..his ALS specialist did not intially approve of the treatment but after warning him of risks he said it was Gary's choice...His specialist did however downgraded him from a "moderate" progressor to a " slow" progressor...but no improvements were noted ..strength still declined but at a less rapid pace..as said by his specialist could be coincidence or could have slight benefit..but not enough evidence for IRB due to strict hospital policies....he did however try to help Gary get an IRB through the military base by writing a letter to his PCM..but they too were unwilling for the same reason lack of sufficent evidence..at a cost of $15,000..we'd go bankrupt and he'd still have ALS if he continued out of pocket on his own ...and there is a chance the slowing of decline was coincidence..


HUCB...another treatment his physicians could not "officially" condone..but his ALS specialist did agree to taking before and after parameters for objectivity..according to both before and after parameters Gary continued to gain strength for 5 months in several muscle groups..while losing strength in a few others..some measurements even doubled..eating and swallowing improved for 5 months...however after 6 months decline was throughout the body...
He did however hold an fvc of 27 to 31 % for 2 years afterwards with no breathing assistance whatsoever not even a bipap..until a pnuemonia landed him on a vent permanently ...as of June 2, 2004 he is only able to come off short periods of time .. the vent "bypass" ( time can come off vent) was retested by a pulmonologist this August and his parameters are still the same ..However, other PALs had not even short term benefits ..the results were about half and half from the veterans at Braintalk..no one with reported benefits that lasted of over 6 months..at the cost of $25,000 ..I could not recommend this treatment to anyone...as any benefits were short lasting ..a total of 43 PALS tried this treatment... over a dozen posted objective parameters on Braintalk...

Does he regret his decisions ?.. in all honesty "no"...there were no histories of these treatments back then..would he recommend or do any of these treatments himself again "no"...he said not unless ITGG and HUCB were "free".. but he does feel very "grateful" to his physicians for letting him try them back then..even the things he did not feel helped at all they gave him a shot..the things they could not "officially" support...they helped with as much as they could...I agree new PALS though should not spend money on treatments dozens and in some cases hundreds have tried with no success...and snake oil salesman there out there..be careful.. the money is better spent on equipment needs...Lisa

Ps...I might add he was on Rilutek from the first day of diagnosis...after his liver enzymes elevated..both ALT and AST ...he dropped it ...approximately four years after taking it...only mild permanent damage was done....his levels returned closer to normal within 6 months of dropping it..every three months slowly improved..but I highly recommeend PALS get these enzyme taken..out of all the drugs he regrets Rilutek he regrets the most...his ALS specialist said enzyme testing should be "standard" protocol every few months with this drug...
Lisa