Wow! The information Alison provided was an eye-opener. Like you Michelle, I have been trying to find answers for my husband's ALS. We have learned recently from an article in the LA Times, that the ALS cases among Veterans are linked to a few toxic substances one being Pyrodogstigmine Bromide. The article stated that this product was used with the troops during the first Gulf-War.
My personal quest for a cure or any treatment that could slow down or stop the progression has taken me in different directions. Nothing in mainstream medicine has offered hope. Research continues and after millions on dollars spent for years since Lou Gerhig's was diagnosed with it, there is nothing available to give us hope.
Like you, it is very painful (emotionally) to see a love one, especially our hubbies, become so frail and in my husband's case, totally paralized, unable to chew or swallow his favorite foods, breathe on his own, move his body, talk, etc. The two diseases are motor-neuron related but ALS is faster progression and has no pain associated with its symptoms.
My focus at the moment is on eliminating cellular inflamation with effective nutrition and nutriceuticals such as CoQ 10 supplementation, Omega-3 oils, Turmeric, CDP Choline, B-12, Noni Juice, among other alternative protocols such as far-infrared path treatments and we are testing a new product that helps athletes with muscle building. These are patches that use nanotechnology. They are made by LiveWave (I could swear I have seen some results since he started using them a month ago!). We are committed to trying anything while we wait for stem cell or a ground breaking cure.
There is another possible product I have read tons of research on and I know the MDA is funding a study with this product for another neuro-muscular disease, is IGF-1. More especifically a drug called IPLEX. Due to patent-related issues, the product was taken off the American market a couple of years ago. But the three companies involved in the litigation have agreed to allow the selling of the product for ALS thanks to the efforts of hundreds of PALS (persons with ALS) and their families who via a successful mailing campaign pressured them to release IPLEX. As soon as FDA provides guidelines, neurologist will be able to prescribe it for ALS as on off label drug. By the way, IGF-1 also sells under the name of Increlex (but does not contain the BP3 binding protein that IPLEX has which shows to be more effective for ALS cases). IGF-1 is prescribed for children who lack normal growth, it is FDA approved. With all that said, I wonder if IPLEX would work for your CMT?
How about stem cell therapy? Have you looked into this? Bone marrow stem cell treatment seems to be working on same conditions.
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Wow! The information Alison provided was an eye-opener. Like you Michelle, I have been trying to find answers for my husband's ALS. We have learned recently from an article in the LA Times, that the ALS cases among Veterans are linked to a few toxic substances one being Pyrodogstigmine Bromide. The article stated that this product was used with the troops during the first Gulf-War.
My personal quest for a cure or any treatment that could slow down or stop the progression has taken me in different directions. Nothing in mainstream medicine has offered hope. Research continues and after millions on dollars spent for years since Lou Gerhig's was diagnosed with it, there is nothing available to give us hope.
Like you, it is very painful (emotionally) to see a love one, especially our hubbies, become so frail and in my husband's case, totally paralized, unable to chew or swallow his favorite foods, breathe on his own, move his body, talk, etc. The two diseases are motor-neuron related but ALS is faster progression and has no pain associated with its symptoms.
My focus at the moment is on eliminating cellular inflamation with effective nutrition and nutriceuticals such as CoQ 10 supplementation, Omega-3 oils, Turmeric, CDP Choline, B-12, Noni Juice, among other alternative protocols such as far-infrared path treatments and we are testing a new product that helps athletes with muscle building. These are patches that use nanotechnology. They are made by LiveWave (I could swear I have seen some results since he started using them a month ago!). We are committed to trying anything while we wait for stem cell or a ground breaking cure.
There is another possible product I have read tons of research on and I know the MDA is funding a study with this product for another neuro-muscular disease, is IGF-1. More especifically a drug called IPLEX. Due to patent-related issues, the product was taken off the American market a couple of years ago. But the three companies involved in the litigation have agreed to allow the selling of the product for ALS thanks to the efforts of hundreds of PALS (persons with ALS) and their families who via a successful mailing campaign pressured them to release IPLEX. As soon as FDA provides guidelines, neurologist will be able to prescribe it for ALS as on off label drug. By the way, IGF-1 also sells under the name of Increlex (but does not contain the BP3 binding protein that IPLEX has which shows to be more effective for ALS cases). IGF-1 is prescribed for children who lack normal growth, it is FDA approved. With all that said, I wonder if IPLEX would work for your CMT?
How about stem cell therapy? Have you looked into this? Bone marrow stem cell treatment seems to be working on same conditions.
December 9, 2008 - 12:20amThis Comment
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