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Posted: Tue Jun 20, 2006 4:27 pm Post subject: Jimmylegs--from Netherlands Daughter
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
Posted: Tue Jun 20, 2006 6:46 pm Post subject: thx :)
hi there, boy do i hear ya regarding the 8 hours a day of reading. you get a handle on medicalese pretty fast, eh! (my research focus was disease mechanisms in the body and how to use nutrition to correct disfunction). i totally agree with your conclusions too, but i have not gotten to the point where i felt i needed anything prescription.
sorry to hear about your daughter's tough times. i was worried about how my boyfriend would react when i told him, but he is certain all the doctors are wrong and that i will triumph over this! i couldn't have asked for a better reaction, even if it does somehow turn out that we're both just in raging denial!!
no worries about the atlanta number. the contact info is on the site, now that i look in more detail. thanks i do at least want to find out more about their products to see if it lines up with the regimen i've already established for myself. the last thing i am missing (that i know of so far) is 'inosine' to raise my uric acid levels. i was a strict vegan for over a decade prior to this attack, but that went out the window as soon as i started trying to figure out all this body biochem. we veggies have low uric acid levels, and as i was recently informed here (i imagine u know this) so do ms patients!
ps. if u want, you can send private emails when you have a message for a single forum member only.
Posted: Wed Jun 21, 2006 3:44 am Post subject: Re: Jimmylegs--from Netherlands Daughter
Chris55 wrote:
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.
Keep in mind that the results of such a "test" will likely be obscured by the fact that pregnancy is often protective in MS. In effect, the immune system goes into a tolerance mode in order to allow the developing child, which is essentially a foreign body, to coexist within the mother.
Posted: Wed Jun 21, 2006 5:08 am Post subject: diet during pregnancy
OR, perhaps that after six months of living on a nutritional regimen designed for the health of the foetus, that the mother's health status improves? i don't know how soon after delivery the protective effect goes away. so i have no idea if nutrition and supplementation during pregnancy really have anything to do with it.
chris, do these natural supplements your daughter is taking specify that they are not to be used during pregnancy? that is very interesting. i know some things, even as simple as sage, are not good for pregnancy. but i wonder what's in these formulations that could be harmful.
Joined: Jul 28, 2005 Posts: 1279 Location: Sydney, Australia
Posted: Wed Jun 21, 2006 6:21 am Post subject: Re: Jimmylegs--from Netherlands Daughter
Chris55 wrote:
So I will be more than happy to give you the number for Atlanta when my daughter gets home from her camping trip.
I dont know american post codes at all, but the website you refer to has a "Contact Us in the US" page:
http://vonner.com/page9.html
I did a search on their "Lyme Like" treatment called "Neurvox" in google, and it only led to a link that was dead, and which then lead to a link for cheap internet business web sites. I was hoping to find others who had benefited.
Posted: Wed Jun 21, 2006 11:22 am Post subject: Pregnancy
There was a recent article (on this site) about a new drug that "increases" the killer T-cells and MS patients had a positive response. Apparently, in pregnancy this same killer T-cell also increases. There is a new theory that perhaps the MS patient does not have enough of these cells and that the "generals" are being controlled by the "foot soldiers". My daughter's treatment is only for 5 1/2 months and then NO MORE! The young man I discussed initially (with Hodgens' Disease) took only 12 weeks a year ago, and as I said, he is now fine. This is all so new right now and my daughter, her husband, etc. don't know what to expect in the long run. And again, the good news is that this is all supplements and she is staying on her MS medicine. So--we shall see. I will provide updates as we go along for those who are interested!
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i do at least want to find out more about their products to see if it lines up with the regimen i've already established for myself. the last thing i am missing (that i know of so far) is 'inosine' to raise my uric acid levels. i was a strict vegan for over a decade prior to this attack, but that went out the window as soon as i started trying to figure out all this body biochem. we veggies have low uric acid levels, and as i was recently informed here (i imagine u know this) so do ms patients!
