Hi, Agios
..Thanks for starting this 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 Malaaise 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 but after warning Gary of risks said the treatment in San Juan was Gary's choice...Upon return 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 this out of pocket...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 try 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..he progressed like a freight train on this drug alone...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.. three after months slowly improved..but I highly recommend PALS get these enzyme taken..out of all the drugs he regrets... Rilutek he regrets the most...his ALS specialist said liver enzyme testing should be "standard" protocol every few months with this drug...

Also wanted to add as I saw this being addessed on several threads..
Gary and I tracked almost 300 people in what was known as ALS /Lyme groups back in 2000.. through watching he chose not to try it...
He compared the rate of those who passed away taking it ...as compared to others who did not...if anything the rate was higher...certainly not lower..
Treatments for so- called ALS Lyme were oral Flagyl and ...Rocephin also known as "ceftriaxone " both through injection and IV ...Ceftriaxone is not available in oral form... ( many had central lines of Ceftriaxone put in by so called Lyme literate docs)..
Yes this is the "same" drug in clinical trials now ..to say the least I'm not impressed with this trial...as although the researchers conducting it rightfully scoffs at the ALS / lyme theory..they now have a new theory regarding its application in ALS ...
I feel regardless of "theory"...after over 3 years of observation of many people taking it with ALS ..I personally will make a bet it does not work...
However, the only personal experience we have had with ceftriaxione ... is that it is one of the antibiotics my husband has taken for pnuemonia ... it did wonders for that..but his strength and progression was always worse after pnuemonias not better...to us the hundreds of people that came before him with the drug speak volumes however in regards to its efficacy for ALS..Lisa

Hi Jeff,

Great to hear from you! Yes...we are not rookies any more! I am going on 5-years since symptom onset. My how time flies when you're having fun!

Keep Hanging Tough!

Peace, Love and Energy,

Agios

I personally have never heard of it....but maybe someone will post who has...

Here are my feeling on alternative treatments in general...the people who are making the alternative treatments are making a heck of alot more money...than any slight benefits that may or may not be gained...

If something is relatively inexpensive...and someone feels it is helping or could theorectically help....nothing is wrong with trying it ... if that is what they choose to do ..but if something had a huge effect we would all know it by now...if people want to lose thousands of dollars that is their own business too I guess...as I certainly can't say it is wrong..I've done it myself ..but I will say while yes I do feel some things had a "slight" benefit on my husband other things he tried had no apparent benefit at all...but even the slight benefits were not there at all for many others who tried the same things..it is essentially like gambling...roll the dice ..you may get some temporaty relief....but in the long run you will end up losing more money in the end than what you won in gains.... so in reality my view is ...you can't afford to gamble any more money than you can afford to lose in the quest for experimental treatments..
If I were a milloinare I might say why not spend thousands of dollars here and there..as maybe one day someone will get extremely lucky with something..but for now I think I'll wait and see...as I "fold " in the gambling myself..unfortunately I'm not a millionare.. but even the very wealthy with ALS have not been that lucky..Lisa

I think the drug pushers and the M.D.'s that push them are a far bigger scam than all the alternatives that exist combined. We pals are far better off exploring alternative therapies or giving $$$ to TDF than we are buying "officially" sanctioned drugs that are both toxic and ineffective. Just because insurance pays for it doesn't mean it doesn't cost us all a lot of $$$ in the end. The pittance spent on alternative therapies pales in comparison the the money spent on just a single drug like lipitor.
Mark

Lisa,

You've been through a lot in the last 8 years. One of the points that you made is one of the most important that I've noticed.

I do see a huge problem when claims are exaggerated...and only the most positive experiences are revealed..

The "positive experiences are revealed" part is something that I really noticed. I remember our friend Mark. He was a great guy and I remember when he tried BNG and how excited he was that he felt improvements. His post was held up by others as another shining example of "BNG".

A few months later Mark revealed how he continued to progress and then a year later he had really worsened. His story is just plain tragic and I still get angry when I think on how his family (wife!) had treated him.

I believe that he was probably experiencing the placebo effect for the first few months after taking the concoction. How many others though that had their stories shared did not later have their progression also shared? Mark did. I hope that he found the peace that he sought.

Because the maker of Scleronet (was it Ray, I don't remember) had submitted his product to a well known hospital in Australia for a formal and controlled clinical trial (which failed), I think that he was no fraud, but that you are correct in your assessment. He saw what he saw (and reported to you) because people have an incredible capacity to see what they WANT to see and not what is. Scientists and laymen alike. None of us are immune and when something as overwheming as ALS hits people like a truck out of nowhere and brings out every emotion possible its easy for rational judgement to become clouded. I know mine was.

Lisa and Wayne, that's exactly why I'm here... I figured that those who have been battling this disease longer than my friend would have a lot of guidance for us.

Thank you very, very much for your candor, and I wish you both the best.

I will continue to read here and everywhere else I can find in the hope of finding something that makes sense.

My friend sees a ALSA neuro Monday who will comment on alternative/experimental therapies, and I'm trying to compile a list for them to ask about.

Thanks Agios.

I am a new PAL and am experiencing rapid symptom progression. I am trying to do my best to slow down the symptoms. By hearing what works and what does not will help me accomplish this goal. I don't think I have as much time as others and therefore would appreciate the veterans' assistance in filtering out some of the non beneficial treatments. Any thoughts, guidance and words of wisdom will be surely appreciated

Regards -Brenda