Location: Mississauga, Ontario, Canada
I've been using the Ensure Enlive product with HBM (Calcium Hydroxy-beta-methylbutyrate) - not to be taken as an endorsement - to increase my protein and caloric intake throughout the day, as I can't seem to eat as much as I used to a few years ago. Ensure contains 1.5 g of CaHMB ["HMB (beta-hydroxy-beta-methylbutyrate) comes from a building block of protein and is found in small amounts in some foods. It is difficult to get enough HMB from your diet. HMB supports muscle health"] ... but am getting bored with the flavours and looking for alternatives.
This led me to look into the HBM component a bit more... then I found this athletic supplement from Muscle Tech: Clear Muscle. I read the info and came across the optimistic (for me) statement that it even fights off muscle breakdown, shortens muscle recovery after workouts, and increases muscle-building!
Sounds convincing, no? Or is it gobbledigook? Or a waste of precious $ ?
So what I am really asking is this... would it be worth taking this stuff (at CAD$ 60/168 pills|84 servings) to prevent at least some muscle wastage overnight?
Wikipedia has interesting info as well... in that there are no side-effects to using HMB...
Besides the patent, and cost, why is no one looking at this further?
While it does not promise to be a cure, it appears to me to at least be something to mitigate the muscle deterioration we expect over time...
HYPE or HOPE ???
Location: Chicago, IL
Welcome Jürgen, thanks for an interesting post.
About 2 years ago I tried HMB for 3 months. I didn’t notice much of any effect though in fairness I didn’t do a thorough trial attempting to test it in isolation and wasn’t prepared to notice subtle effects. It’s still on my list of potentially beneficial things but far enough down I probably won’t get back to it for a long time if ever as I regularly stumble across possibilities more exciting to me. Back when I tried it I was making many changes very rapidly feeling a lot of time pressure and somewhat desperate for improvement. Since then I’ve become healthier and the urgency of rapid results is diminished making it easier for me to adopt a more methodical approach to testing interventions.
I think the greatest potential benefit of HMB and most any other supplement or medication you might try is they give you a reason to track your health and fitness. If you aren’t tracking it is hard to know if they are worth the expense. Once you are tracking it becomes possible to see the effects of so many other lifestyle factors such as sleep, diet, exercise, stress management, toxin minimization, etc. Once you find any change making a positive difference it begins to change how you think about KD and its management and can inspire greater effort to do better.
Location: Mississauga, Ontario, Canada
Since last year I've breen tracking my exercise levels with a Fitbit, and as only having diagnosed with KD this April, I'm still learning a lot about KD itself, and my own levels of exercise tolerance, and nutrient intake. I thought I'd look into this HMB stuff by itself as it was listed as an interesting/beneficial ingredient of an Ensure product. I was interested in the "stop the catabolism" aspect overnight as well as shortening recovery time after exercise (that may take me a day or two to recover, when I inadvertently overdo it.) Plan right now is to try it out, at least as an overnight dose.
For other times when I know I'm going to work the muscles repetitively, I'm taking a creatin supplement in water before and after.
Right now, I have more issues in eating large amounts and lack of appetite... distressing to say the least, as I've been a foodie for decades. I ralize I have to perhaps eat more smaller meals to make up for it...
I think on the whole we all have to make the best with what we know helps our condition – big pharma is not going to be the answer since there is no money it it for them, or too expensive for us – my money is on gene therapy down the road when the tech becomes safe and available.
Location: Chicago, IL
Please update us on your HMB results. I’m curious to hear results of anything and everything that others with KD find helpful. Or harmful or useless…
I’ve been taking a low dose of creatine monohydrate for a couple years. I haven’t made a serious effort to measure its impact which would require keeping everything else as constant as possible while testing phases of heavy use, non use and probably phases of moderate use too. But it is one of the better studied muscle performance enhancers with fairly good evidence of benefit. It would be nice if there was some data on people with KD which could make me more comfortable with trying a higher dose. I’ve been buying it as bulk powder, 1 KG for ~$20 which lasts me a year and at that price point I’m ok with continued use without strong indication of effect.
Haven’t tried a fitbit. I’ve considered it and several other exercise and sleep trackers but have been doing ok using my phone to take notes and to time and measure the distance of various activities such as walking and cycling.
Consider yourself lucky. I have the opposite problem of eating too much. I didn’t realize how bad it was at the time but a few years ago I had become morbidly obese despite gaining less than 5 lbs over my peak weight in college. The scale wasn’t setting off alarms because I lost so much muscle. I switched from reliance on the scale to getting dexa scans to track body composition. I also use a tape measure and skin fold calipers but they don’t see the fat in my muscles and I’ve found the scans a useful reality check keeping me from becoming complacent in my fitness goals.
While it is possible for me to gain muscle when eating more, I more readily gain fat and I still have a fair amount more to shed before I’ll be at a desirable body fat percentage. So I’ve been doing the opposite, eliminating snacks and skipping meals when I can. Hopefully in another year or two I’ll have lost my excess fat and can ease back on fasting and spend more time focused on muscle building.
I agree. Pharma might in the short term be a small part of the answer for some such as Leuprorelin and Dutasteride to inhibit testosterone mediated AR protein aggregation or drugs such as pioglitazone and metformin to help manage metabolic syndrome and poor glucose homeostasis but finding a drug which has profound impact with minimal adverse effects seems perpetually a few years off.
Gene therapy looks promising but it is hard to say how long it will take to become an affordable/readily available option. I’d also be surprised if it turns out to be significantly helpful for those with advanced disease. I think the highly variable late onset and progressive nature of KD suggests the gene doesn’t directly produce disease but rather contributes to many issues that occur with aging causing deterioration of muscle, nerves and metabolic health and fixing the KD gene won’t by itself undo damage already done.
I think the highly variable nature of KD progression with weak correlation to repeat length suggests other factors play a big role. Considering KD is just one variation in a single gene and we each have thousands of other genetic variations it seems reasonable to assume some of us are doing better or worse due to our other genes. It’s aso increasingly understood gene expression matters a lot too. I’ve found for myself that various approaches to diet, exercise and other lifestyle factors make a tremendous difference to how I look, feel and perform on a short term basis. I wish I knew what was best long term but am crossing my fingers that chasing short term results will work out ok for me for a long time to come.
Kennedy's Disease Association
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