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06/28/2005 23:48
Kristen 
06/28/2005 23:48
Kristen 
Kristen - reporting in to SusieQ on a-l-c

I've only been taking the a-l-c for about a month, so it's a bit too early to tell. I last had NA 2 months ago and I'm generally right back where I started within 6 months. I've lost count of the number of NA's I've had, but it's somewhere around 8 or 9 (I have it all written down, but don't have the info with me.) Give me a few months and I'll be able to tell you if it seems to have any effect. Granted, were the growth to slow down, it might also be a natural case of remission, which DC is known to do. In the meantime, I'm popping pills and I'll keep you posted. Kristen

06/28/2005 23:07
j

not registered

06/28/2005 23:07
j

not registered

A-C-L

There is supposed to be a synergistic effect between ALC and Alpha Lipoic Acid. A company called Juvenon is selling a combination of the two, and the hype is impressive. There does seem to be at least some credibility attached to the people behind it. Check out http://www.juvenon.com/.

06/28/2005 23:29
j

not registered

06/28/2005 23:29
j

not registered

A-C-L

Lest anyone think I'm promoting Juvenon, I found out you can apparently get the same stuff a lot cheaper elsewhere:

http://www.vitacost.com/products/AlphaLipoicAcid_AcetylLCarnitine.cfm?homepage=yes

06/28/2005 23:51
Mary Beth

not registered

06/28/2005 23:51
Mary Beth

not registered

A-C-L

Steve,
I've read about your great results from acetyl l carnitine and/or colchine with great interest. Since I sometimes read the forum daily and at other times slack off, I must have missed your original postings. I think one of your last posts indicated 9 months as the time you've used this combination of RX/supplement? Obviously you had an increase in your liver enzyme count but sort of assume that's from the colchicine. I'm just starting to read up on A-L-C this evening. Are you aware of any negative side effects with it? I read the PubMed article you referenced and have "googled" acetyl l carnitine. Any and all info is greatly appreciated and congrats on your improved condition.
Mary Beth

06/28/2005 23:33
steve 
06/28/2005 23:33
steve 
not that i found

I haven't read of any negative side effects for ALC. If you find any please do share. Colchicine is definitely the more problematic substance of the two from my own experience and there is more written and studied on it.

06/28/2005 23:41
Boz

not registered

06/28/2005 23:41
Boz

not registered

A-L-C

Anyone have any info on whether sub-lingual (under the tongue) a-l-c works better than plain, old swallowing it? (If it works, period...)

06/29/2005 23:42
SusieQ 
06/29/2005 23:42
SusieQ 
a-l-c working group?

Since the time Steve initially introduced the subject of a-l-c, several of us are trying it .

My idea is for us--a subset of the Dups group--to keep in touch and share results periodically, perhaps every 3 or 4 months, or whatever interval seems beneficial.

I'd be happy to keep an e-mail list if anyone is interested, to remind people to report in and we could start a specific topic here periodically on which we could all report at the same time. And/or I could create a little questionnaire, so we all have certain baseline info. on each of the responders.

Or any other ideas for staying up on this? I'd be quite interested to see how this plays out over a period of time, like several years.

My Dups began so recently and so far so mild. I feel quite fortunate. I started a-l-c after a series of three lumps in a row had formed one after another in a few short months. I see no change since I started a-l-c, but its only been 2 months (and at low dose) and have no idea if a-l-c is affecting this.

I've never kept e-address lists, nor address books. I've heard they can be hacked, and besides I don't like being on computer lists. But I could just keep a file of our e-mail addresses and contact others from time to time.

Let me know if this idea grabs you, or stimulates any other ideas for a little, non-scientific experiment!

Best to all.

Susan

06/29/2005 23:56
Boz

not registered

06/29/2005 23:56
Boz

not registered

A-l-C

The e-mail check-in sounds good to me. I think I will stay away from colchicine.

06/30/2005 23:45
Steve

not registered

06/30/2005 23:45
Steve

not registered

not to be paranoid

but the last time I posted an email on a message board i was blasted with so much spam I eventually changed the address....i'll keep posting an update every now and then here but if you guys compile results and want to post them every 3 months or so then all the better.

How about this format:
Stage of Dup: Nodules, contracture, advanced contracture
Progression: Was it progressing slowly, fast, not at all before the meds
What did you take and what dose/frequency:
Results since taking:

07/27/2005 23:36
SusieQ 
07/27/2005 23:36
SusieQ 
acetyl-l-carnitine ~dq~study group~dq~

Some of us are trying a-l-c, (a nutritional supplement) either by itself or in combination with other therapies.

None of us know for sure whether it is a significant factor in slowing the progression of Dupuytrens but it seems to be helpful in Peyrones, a related disease.

I want to create an informal "study group" of those trying a-l-c so that we can compare notes.

HERE'S WHAT I PROPOSE

I will keep a list of e-mail addresses of those interested in sharing results. (The list will be kept in a Manilla folder, NOT on my computer, for extra security).

At a six-month interval I will start a TOPIC for study group participants and at the same time alert people on the list that they can post and share results under that topic heading.

I will also include a series of questions on my e-mail (and in my post) so we have more background information to sift through. (Including what other therapies are being tried, history and severity of dups when a-l-c was started, dosage being taken, etc.)

Please e-mail me at above e-address if you are interested in participating and want to receive a notice when the topic is being presented.

Otherwise, expect to see our results posted sometime around the end of January '06.

For more discussion on a-l-c and related issues, scroll through previous listings below on this topic!!!

Best wishes to all!!!

Susan

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