There was a show on the Diane Rehm show on NPR earlier today. The guest was Alice Wexler who wrote the book "The Woman who Walked Into the Sea", story about a woman with HD. On the show they discussed HD and issues. Most of you probably already know most of the items mentioned on the show but still worth a listen. Here is a link to the host's website: You can still listed to thby ChiTom - Huntington's Disease Support Center
I'm a little confused about the Omega supplements and what they should be high in - EPA or DHA. Miraxion is high in EPA but hddrugworks.org recommends 2g of DHA. They also recommend higher DHS vs. EPA in the supplements. I found a DHS supplement by Carlson Labs which is 500mg DHA and only 100mg of EPA per caplet. Thanksby ChiTom - Huntington's Disease Support Center
I posted this on accident on the disability insurance thread. Sorry for the double post. The doctor I saw recommended I do the test anonymously. Fake name, pay cash, no social security number etc.. My real information does not exist anywhere in that doctor's office. If you have that option I would recommend you go that route if all you're doing is the genetic test and require no other treatmeby ChiTom - Huntington's Disease Support Center
Does anybody know if it is OK to mix creatine with coffee? I have found several body building articles with both pro and against mixing creatine with coffee (in particular mixing with caffeine). Those articles deal with how the creatine is absorbed into the muscle which I would imagine is different with how creatine is used by the brain. If regular coffee is bad how about de-caf coffee? Thankby ChiTom - Huntington's Disease Support Center
The doctor I saw recommended I do the test anonymously. Fake name, pay cash, no social security number etc.. My real information does not exist anywhere in that doctor's office. If you have that option I would recommend you go that route if all you're doing is the genetic test and require no other treatment. Not sure if doing the test anonymously will help in any way in the future but until thereby ChiTom - Huntington's Disease Support Center
I was checking out Google News on Huntington's disease and I came across the Medivation Dimebon article. There was also a very interesting article on Myelin and its role in Huntington's. I would be interested to know if anybody had any thoughts on Dimebon as a treatment and on myelin and potential early treatments. Do any of the existing treatments such as Creatine address the effects ofby ChiTom - Huntington's Disease Support Center
The DNA Repair and HD link on the home page is not valid.by ChiTom - Huntington's Disease Support Center
Are there any studies that are looking for gene positive asymptomatic candidates. I thought Predict-HD was one but I have not had any luck contacting anybody. If anybody has any info on any studies please let me know.by ChiTom - Huntington's Disease Support Center
I wonder if the HD-02 creatine is the same as their Neotine brand. I would imagine as an FDA approved drug it should start to get covered by insurance and the doctors will use it as a real treatment. As a supplement insurance will never cover it and I think most doctors don't see it as a real treatment option. Also according to Avicena's website they are planning on the Phase III study inby ChiTom - Huntington's Disease Support Center
My father, 72, was on Haldol for a number of years. It took care of the chorea but it brought on drug induced parkinson's (tremors in his fingers). He did sleep a lot. Nap in the day and went to bed at 6 - 7 every night. When we went to a new neurologist at a huntington's center of excelence they took him off of haldol. The doctor described haldol as old school medicine. She indicated that Haldolby ChiTom - Huntington's Disease Support Center
Hi everyone. My name is Tom and live in Chicago. My dad has HD and was mis-diagnosed for a while. He did not show symptoms till his 60's. He's 72 now and he finaly had a conclusive test a few months back and I was tested a month ago. My results were postive with a CAG of 41. I'm 35 and so far I've had no symptoms. I'm trying not to symptom hunt but that is difficult. My doctor warned me not to.by ChiTom - Huntington's Disease Support Center
Rush Hospital in Chicago is a CoE. They do a neuro exam and psych eval to look for any symptoms first. During the psych eval the psychiatrist asked a lot of questions regarding depression, suicide etc.. They're trying to asses how you would handle a positive result. Both doctors were pretty adamant about having my wife present for the results. We met again 4 weeks latter (took a while due to scheby ChiTom - Huntington's Disease Support Center
Depends on the CAG Repeats. From <28 Normal range; individual will not develop HD 29-34 Individual will not develop HD but the next generation is at risk 35-39 Some, but not all, individuals in this range will develop HD; next generation is also at risk >40 Individual will develop HD The way I see it over 28 and you have an unstable gene but might never become symptomaby ChiTom - Huntington's Disease Support Center
There are hundreds of different Creatine brands. Is there a difference? What about Creatine by Avicena - Neotine. They claim it is utra pure. Since Avicena is doing the creatine study do you think it is better.by ChiTom - Huntington's Disease Support Center
HD Lighthouse has a great section on supplements which includes dosages and what they do - The way I understood things from this and other readings is: Creatine or Coenzyme Q10 work very similarly. Creatine results seem more positive. - 10G creatine daily - I use tablets, no coenzyme Omega 3 - 2G of EPA 400U of Vitamin E daily (which I get in a daily multi vitamin) Blueberries -by ChiTom - Huntington's Disease Support Center
I keep seeing more research on minocycline. Some good, some bad. Does anybody have any thoughts on it. It seems by itself it has not produced the results people expected yet combined with other drugs it has better results.by ChiTom - Huntington's Disease Support Center
Have there been any studies done that show the affect an HD cocktail has on delaying onset. I've heard from individuals with similar CAG as myself and that have been on the HD cocktail (and exercise) be symtpom free for a long time, into their 50s+. I'm trying to figure out if that is the more common case or if it is the exception. I would imagine that treating a non-symptomatic individualby ChiTom - Huntington's Disease Support Center
It seems that creatine is favored over CoQ10. I guess for now I'll return the CoQ10 and stick with the 10g of creatine. There seems to be more HD related research with creatine vs. CoQ10.by ChiTom - Huntington's Disease Support Center
Thanks for the info Will. I forgot to look at the servings number for the Creatine. I notice in your article you do not take any CoQ10. What are your thoughts on that. Thanks Tomby ChiTom - Huntington's Disease Support Center
NSI is the vitamin manufacturer. I purchase mine from www.vitacost.com. Here is a link to the actual product -by ChiTom - Huntington's Disease Support Center
I am new to the forum and HD in general. Found out a week ago I am positive with a CAG of 41. I am 35 and do not have any symptoms, my father was diagnosed a month ago at 70, so I am trying to figure out what I can do to delay onset. I'm in Chicago and Rush hospital seems to be a pretty good center for Huntington's. My neurologist recommended exercise, specifically activities that help with bby ChiTom - Huntington's Disease Support Center