Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Hi Aletha, My story is not about MS - it's about rett, and my daughter. Rett is also an autistic disease. I forget now how I started looking at LDN, but naltrexone has been tried at higher levels with rett kids, with some good and bad effects. Long story short, I look at everything... rett has and underlying mecp2 mutation, which is something that cancer researchers also work in, although rett syndrome and cancer are very very different... I guess I just look at it all, and I've been involved in special needs groups for a long long time. My cousin has MS however, and my neighbor has MS, and from that point of view, I remain interested in LDN also. My neighbor also has brain cancer, and I see LDN being looked at for head/neck cancer - I think I read something about Dr. Zargon looking at that. Anyway, I'm not sure I can help with an LDN story just yet.... but I'm quite curious about this approach, and wish to understand better why/how it works and helps so many different issues... I've also joined an autism/LDN group, and I think a cancer/LDN group... I'm just trying to get my arms around this whole thing. In terms of discussing clinical trials, dosing issues, animal testing, pharmaceuticals, non-pharma approaches, academic approaches - well, it's all the same basic thing... doesn't matter the disease... and I think that's how I got into this back and forth email. We've had to look at many avenues for my daughter. I'm curious, has anyone approach NORD about LDN? About stories or research dollars (if they do that) - the National Org of Rare Disease? I could be wrong, but is MS concerned a rare disease? I forget the ratio they look at... but they do cover lots of disorders ... Thanks, On Apr 25, 2008, at 4:10 AM, low dose naltrexone wrote: 3c. Re: human trials Posted by: " Aletha Wittmann " Aletha@... Date: Thu Apr 24, 2008 6:13 pm ((PDT)) Dear , Do I have a copy of your story? I would love to have one if you are OK with that. We are looking into putting a non-profit book of short stories together for LDN and its different uses. It would be a simple to read non-scientific book of peoples stories. Thanks so much Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2010 Report Share Posted September 20, 2010 Kirsten, I am so glad that things are going well for . Fun in moderation is what we have to do in order to maintain the happy perky kids we want. Veri & Jaye 16 poly Stories So great to see you on here Twila! Hope you're feeling supported by all these fabulous women (and occasional men & kids!) Keep reading the posts. You'll feel like an expert on the subject in no time. And a little optimistic-ness for you... We just got home from 's rheumy visit and she's doing great! The best visit we've had since diagnosis. Then we went to the mall and left her wheelchair/stroller in the car. She walked to whole mall and back and was still perky and happy 2 hours later when we left. Thank you Enbrel!!! Kirsten mom to , 6, spondy > > HI my 3 year old was just diagnosed with jia I am looking for anyone who would share their stoiries and give info. thanks Twila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Thanks Veri! My face hurts from all the grinning I've been doing lately : ) Kirsten > > > > HI my 3 year old was just diagnosed with jia I am looking for anyone who would share their stoiries and give info. thanks Twila > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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