My mom died about 8 months ago from HD and I've tested positive for the gene. My doctor has me on a drug called minocycline to help slow down the on set of HD, but what I really want to know is more about this drug that I'm on. What it is suppose to do, how, for how long. Please any info would be great!! Thank you.

Hi Shaun,sorry to hear of your positive test result. One of my Brothers was put on Minocycline about 6 months ago and so far no changes have been noticed in his condition,minocycline is an Antibiotic and is now in the very Early stages of testing and use for HD,wish I had something more positive to pass on to you,hang in there and I am sure there will be other responses to your question. If I learn anything new I will let you know.Take Care.

As Ron has said, minocycline is an antibiotic. Clinical trials with minocycline and people with HD have just started but it sounds like your doctor does not want to wait, probably reasoning that minocycline is considered a safe drug. Minocycline has been used for an antibiotic for 30 years but it' use with HD is still experimental.

The interest in minocycline comes from research with the HD mice. The use of CASPACE inhibitors was found to slow onset and delay progression in the HD mice in 1999. However, the caspace inhibitor used in the first round of research is toxic to people so the lead researcher, Dr. Robert Friedlander looked for an approved medication with caspace inhibiting properties. Minocycline has these properties.

Minocycline was tested on the HD mice with good results in 2000. Clinical trials with people are starting with a safety and tolerability study and assuming the results are good, an expanded trial will then follow.

The concern, as always, is with side effects. One known side effect of concern with minocycline is balance problems.

We have some information about the research on the site under the research FAQs. It's also mentioned under Friedlander's presentation in the convention coverage. We will certainly be reporting on the results of the safety and tolerability trial as soon as they are available.

Briefly, the theory that Friedlander based his research on is this: the mutant huntington's disease protein is much less toxic as long as it remains in solution. However, enzymes called CASPACES (which are involved in programmed cell death called apoptosis) cleave the protein. Fragments of the protein are then able to make their way into the nucleus of the cell where they don't belong and interfere with cell processes. They form 'sticky' aggregates which sequester other proteins needed for the cell to work properly.

When is the safety and tolerability study starting?

The FDA cleared the use of minocycline for the study at the end of June so it should be starting soon if it hasn't already started. I keep checking the Huntington's Study Group website for information but it hasn't been updated about the minocycline study since winter.

Thank you for the information. Hopefully this drug will work for me and can be used to help the rest of us. Also is there any thoughts on the use of creatine to slow HD? Thank you again!

Creatine is also in clinical trials with people because it helped the HD mice. Since creatine is available over the counter, many people with the HD gene aren't waiting for the results. My husband - who has HD - has been on 5 grams of creatine daily for more than two years. He has had virtually no progression plus I saw an improvement in his memory, which I didn't expect. Again, this is a decision that individuals have to make for themselves in consultation with their doctor.

Does Creatine come in tablets? Can it be taken with fish oil? Marsha, does your husband take both? I just started taking fish oil tablets. I didn't realize I had to take 12 fishies a day, till someone told me to read the label to get 2g a day. I hope these supplements are safe for kidneys and liver and so forth. Maybe the risk is better than getting worse HD.

Hi Deb! Lol, you never know who you will run into in these places! I take creatine along with the fish oil. I've been taking the Twin Labs Fizz Fuel kind. I tried capsules but they caused low blood sugar which made me shake more. I also had to take 12 caps a day, but with the FizzFuel it's just one glass. And it tastes good! (At least the grape does, it's all I've tried.) I've never heard of anyone having any problems with taking fish oil and creatine both.

My husband takes both, too. He has tried different versions of creatine. He was taking the micronized powder form in juice but now he's trying a gel version. He likes either but found that that non-micronized version didn't dissolve well.

My daughter is 27 with four small children and over the past 5 years has been showing slow progressive symptoms. Within the past 6 months her concentration has gotten really bad, she has been exhausted all the time and she has shown a lot of twitching and waving of the hands and arms.Her voice was weak and getting quite slurred so that at times it was difficult to understand her.

She has for the past 5-6 weeks been taking a product called Mannatech which we originally heard of from a women in the midwest who had positive results with it. It is a glyconutrient. As of this date- I can now understand her. Her slurred speech has dramitically improved, her voice is stronger. She still struggles with depression but feels it to be a little better. She says she notices that if she doesn't take her Mannatech the twitching is worse and will calm once it is in her system. I am cautiously happy about this. We are interested in anything else to help her. I would like more imformation concerning creatine and Fizz Fuel. Where do you get them? How much do you take?

I'm only 21 and have heard that taking creatine at a younger age can be harmful. Does anyone know if this is true, and at what age is it safe to start taking it? Thanks for all your info!

That's a current concern. There doesn't seem to be much evidence that creatine really improves muscle strength or sports performance and since there haven't been studies involving creatine and young people, some doctors are cautioning against it. Why risk any side effects if there's no real potential gain?

I would talk to my doctor and see what he thinks. My husband (who was 49 at the time) talked to his doctor before taking creatine. He hasn't had any side effects.

One good possibility for delaying the onset of HD which I heard a researcher speak about on Saturday is through exercise! This is because exercise increases the level of BDNF (brain derived neurotrophic factor) in the brain. BDNF is decreased by the presence of the mutated huntingtin's protein and this is thought to be one of the major defects involved in HD. Treadmill type exercise increased BDNF levels in the HD mice and they stayed healthier longer and survived longer. What was recommended wasn't anything extraordinary but rather the kind of exercise you'd do to develop and maintain physical fitness. Again, I'd discuss this with your doctor.

Mary

I'm sorry to hear about your daughter, I lost my daughter Kelly to HD.
Did you know Mannatech is also thought to be a weight loss thing?
I'd never heard about this product before so I tried doing a search and the only thing I could find.....besides sites trying to sell it, was the below from a consumer watch group.

If it's helping your daughter, that would be hard to dispute that but I hope her regular doctor knows what ingredients are in this and that she's taking it. Some of the other things discussed here and on Jerry's HD Lighthouse (see personal links page) have helped those with HD.

Love
Jean


I would caution anyone taking Mannatech to see these sites too from MLM Watch
A Skeptical Guide to Multilevel Marketing [www.mlmwatch.org]

Mannatech Consumers, Investors Get Two Tales
[www.mlmwatch.org]
Mannatech Inc. tells consumers scientific studies show its nutritional supplements are safe, promote good health and are even covered by a health insurance plan. Investors get another story. In documents for its initial public stock sale last month, Mannatech told potential buyers it doesn't know if its products are safe, or even if they work.

Mannatech Says It Was Misled by Doctor and May Sue
[www.mlmwatch.org]
Mannatech Inc. said it has cut all ties to the California physician who wrote a now- discredited medical journal article used by
the nutritional- supplements company to sell its pills.