Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi All-
I've been off-on this board for years. I am a post-lyme/chronic lyme person...meaning I treated with IV/oral abs for years. I had lyme encephalopathy that left me with horrible peripheral neuropathy in my legs. It has been a constant stiffness/muscle tightness/pounding/pulsating pain in my legs that has made it difficult to stand on them for long periods of time..etc..
If I took anything, even B12 it would seem to setoff the nerve pain ...making it pulsate even more... It has been maddening!!!
I tried alpha lipoid acid in the past and it seemed to make it worse. Well after reading again about how it has helped diabetics with peripheral neuropathy I gave it ago again. Last time I took Vitamin Shoppe brand and it didn't work.
This time I tried Jarrow's Sustained Released Alpha Lipoid Acid and after 3 weeks it finally has calmed that HORRIBLE nerve pain in my legs. I really can't believe it. I actually thought I had some form of arthritis in my hips because my lower back and hips THROBBED. I had no idea it was actually the nerves just pounding those areas to-death!
Anyway, the ALA made me feel a little sick/flu-like at first as I think it mobilized toxins. I just kept pushing through it as I had read it can take about 3 weeks to see pain relief. I have tried EVERYTHING for the pain and NOTHING would help it (except for Vitamin D) and this really does.
I hope this continues...I take 300 mg a day...twice a day...
If it stops working/changes...I'll let you guys know....
You need to take it with food as it can be difficult on your tummy....
As an aside, one of my German friends said a lot of docs in Germany treat nerve pain in Germany with IVs of alpha lipoidc acid...
I'll keep you posted....
................................................
Breaking up a paragraph for easier reading for many here -
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, Bugg, this is amazing!!
And the tiiming is also amazing, considering that I recently posted about developing what has escalated into what seems to be Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome.
Both of which are an extreme form of Peripheral Neuopathy, which I already have. RSD/CRPS are usually permanent and completely disabling.
I have been taking ALA for years. But will try the sustained release form----or even ask for it via IV(??).
Thank you! I remember you from years ago for sure.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on Bugg! So happy for you! Yes, ALA opens up the detox pathways so it makes sense if someone feels bad when they use it as the toxins are finally moving through them. Great idea to try sustained release. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I've read that IV ALA is the most effective for Peripheral Neuropathy; Dr. Burt Berkson in AZ has been doing it for decades. (He's not treating Bb, so should be fine to give his name, I presume).
He wrote a book on it, but it was in 1998. So I wonder about that. There are studies on it in PubMed.
I also know that R-lipoic acid is supposed to be MUCH more effective. So, I'm looking at either IV or R-lipoic acid, or the timed release, since the regular hasn't done anything for this for me.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Bugg - where did you purchase the Jarrow brand time-released ALA?
My son does not have Peripheral Neuropathy but chronic pain. His LLMD has him take 250 mg. R-Lipoic Acid in a suspension form (1 packet) mixed in juice or water once a day, first thing when he wakes up (whenever that is!). So far, there have been no changes and he has been using it for several months.
I will ask his LLMD about the time-released ALA when we see him next week.
Posts: 8981 | From Illinois | Registered: May 2006
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Catgirl, that is good to know. I always felt worse after ALA and now i know why. thanks for sharing.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
ALA mobilizes metals (mercury, etc.), so may need binders also to prevent redistribution of the metals.
And those with CBS and/or SUOX mutations may not be able to tolerate ALA.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You're welcome! Razzle brought up some really good points too. Be sure to add binders.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Razzle & Catgirl - What sort of binders would you recommend? My son does take apple pectin.
Posts: 8981 | From Illinois | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I think Dr. K mentions that apple pectin is a good one. There are so many things people can take (DE, bentonite clay, detox 2, chlorella, takesumi, charcoal, zeolite, pectasol). I muscle test mine (it changes).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hopingandpraying-
I'm so sorry your son is in pain. I purchased my Jarrow ALA from Vitaminshoppe. I had previously purchased the VitaminShoppe brand which was worthless.
It took me about 2-2.5 weeks to stop feeling flu-like on the ALA. It really did feel like toxins were being moved out of my body...almost felt like a herx...Thankfully, that passed and now I just feel the nerve pain relief from the ALA..
ALA along with Vitamin D are helping that pounding/pulsating nerve pain....which even caused my hips and lower back to throb (NSAIDS never helped)
I'm slowly/gradually adding in small amounts of acetyl-l-carnitine which many people with MS take in combination with ALA to combat fatigue....Unfortuately, the ALA makes me sleepy (instead of energized) so I need to find a way to counteract that...I'm hoping to do that by adding the acetyl-l-carnitine to it..
Posts: 1155 | From Southeast | Registered: Oct 2005
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Razzle,
Those mutations are different from the methylation mutation right? C677T
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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