Jimmylegs--from Netherlands Daughter
Posted: Tue Jun 20, 2006 2:27 pm
Hey Jimmylegs--just wanted to first thank you for providing some insight into what my daughter has embarked on! Your info was very informative. Now, she does not have to take the parasite treatment (if that is what it is). She wanted to take all the phases. She was only recommended the one for a severe strep bacteria infection. Second, I want to explain to you where I am coming from.
First, I have read about a billion articles on this disease. Have spent 8 hours a day, 5 days a week reading everything I could find. Have read more clinical trials than I care to remember. I am not a doctor, but pretty much always understood the "conclusions" paragraph! After all my "study", I have come to two conclusions: (1) MS is not an autoimmune disease or maybe even an out-of-control immune disease. For all we know, the attacks are for a reason. Recent research has shown MS patients to have dead/dying mylin producing cells. (The medical community had a heart attack when this was released!) (2) I do not believe this is just "one" disease. This has been proven out twice in the last 3 years. Two diseases that would have garnered an MS diagnosis were found to have not only a cause, but a treatment and there is even a blood test for both of them. Further, that poor, poor creature who died from Tysabri. I am sure you know that Biogen asked the New England Journal to review her case. Their findings: she DID NOT have MS! Of course, Biogen in their arrogance, continues to stand by the diagnosis!
We have been living with this disease for several years. My daughter is "lucky"--her neuro says she has a very mild case. We try to be grateful for any small gift where this disease is concerned. However, it is hard to be grateful when my daughter has to take 1600 m. of neurontin, 800 m. of Tegretol, Adderall, Xanax, Lexipro, etc., just to make it through the day! This disease almost destroyed her brand new marriage and almost cost her her business--a dance school. (I know, don't laugh! With my other daughter and my help, she manages to make it through the year. When parents found out she had MS, she lost over half of her students. Two of her students were the children of her neuro!!! She is not ready to give it up yet.) She has numerous other non-MS symptoms that the doctors either ignore or have the audacity to tell her is all in her head when they don't know what it is! She has many LD symptoms. Her MS neuro said he can't diagnose LD because he does not know anything about it!
When she called to tell me she was going to try this "Netherlands" doctor, I was truly stunned and said "Why???! She said, with tears, "If I don't have to live this way, I don't want to!"
So I am not trying to get anyone else to try this or even investigate it! I am beyond my "soap box" days! I really thought if anyone had tried it, they would probably be on this site. I LOVE THiS SITE--the honesty more than anything else! What I really like about the treatment is the fact that she does not have to go off of her MS meds. She and her husband are planning on having children and she will have to go off the meds. That should be an interesting "test" if this treatment she's on continues to help her.
So I will be more than happy to give you the number for Atlanta when my daughter gets home from her camping trip. I will also be more than happy to keep you updated if you'd like! I just so do appreciate your positive response and your obvious extensive knowledge! God bless, Chris
First, I have read about a billion articles on this disease. Have spent 8 hours a day, 5 days a week reading everything I could find. Have read more clinical trials than I care to remember. I am not a doctor, but pretty much always understood the "conclusions" paragraph! After all my "study", I have come to two conclusions: (1) MS is not an autoimmune disease or maybe even an out-of-control immune disease. For all we know, the attacks are for a reason. Recent research has shown MS patients to have dead/dying mylin producing cells. (The medical community had a heart attack when this was released!) (2) I do not believe this is just "one" disease. This has been proven out twice in the last 3 years. Two diseases that would have garnered an MS diagnosis were found to have not only a cause, but a treatment and there is even a blood test for both of them. Further, that poor, poor creature who died from Tysabri. I am sure you know that Biogen asked the New England Journal to review her case. Their findings: she DID NOT have MS! Of course, Biogen in their arrogance, continues to stand by the diagnosis!
We have been living with this disease for several years. My daughter is "lucky"--her neuro says she has a very mild case. We try to be grateful for any small gift where this disease is concerned. However, it is hard to be grateful when my daughter has to take 1600 m. of neurontin, 800 m. of Tegretol, Adderall, Xanax, Lexipro, etc., just to make it through the day! This disease almost destroyed her brand new marriage and almost cost her her business--a dance school. (I know, don't laugh! With my other daughter and my help, she manages to make it through the year. When parents found out she had MS, she lost over half of her students. Two of her students were the children of her neuro!!! She is not ready to give it up yet.) She has numerous other non-MS symptoms that the doctors either ignore or have the audacity to tell her is all in her head when they don't know what it is! She has many LD symptoms. Her MS neuro said he can't diagnose LD because he does not know anything about it!
When she called to tell me she was going to try this "Netherlands" doctor, I was truly stunned and said "Why???! She said, with tears, "If I don't have to live this way, I don't want to!"
So I am not trying to get anyone else to try this or even investigate it! I am beyond my "soap box" days! I really thought if anyone had tried it, they would probably be on this site. I LOVE THiS SITE--the honesty more than anything else! What I really like about the treatment is the fact that she does not have to go off of her MS meds. She and her husband are planning on having children and she will have to go off the meds. That should be an interesting "test" if this treatment she's on continues to help her.
So I will be more than happy to give you the number for Atlanta when my daughter gets home from her camping trip. I will also be more than happy to keep you updated if you'd like! I just so do appreciate your positive response and your obvious extensive knowledge! God bless, Chris