Alpha Lipoic Acid, anyone?: Greetings to all... - PBC Foundation

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Alpha Lipoic Acid, anyone?

JaneIng profile image
21 Replies

Greetings to all, hope we all get a new health outlook in 2018.

I got my 3 month follow up result back yesterday and to my surprise, the number is much better than before. AST: 29, ALT:19, ALP: 65. Even AMA M2 went from 30 to 25.

My liver enzyme has always been fluctuating between high normal or slightly over. (I have kept history for 5 years now).

The only thing I can attribute this to is : 1. Lab error, 2. Alpha Lipoic Acid: I have been taking Alpha Lipoic acid 600 mg for a month. 3. bio-identical hormone therapy- I have been using topical HRT for 2 weeks by the time the lab was drawn.

It will be interesting to know if anyone has tried Alpha Lipoic Acid and the effect of it.

--Jane

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JaneIng
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21 Replies

That is really great news for you. I don’t quite get the AMA M2 reading. I am .08. I was told that it didn’t matter how high or how low the titre is. That a positive is a positive. Is this true

JaneIng profile image
JaneIng in reply to

I am not sure if AMA M2 number matters once confirmed with PBC diagnosis.

Is it possible that PBC can go to remission? if so, is remission identified by normal AMA M2 and liver enzyme?

I am not fully diagnosed yet because my liver enzyme has not been consistently high so I am not on Urso either. I just go to functional doctor, taking vitamin +minerals + HRT and thyroid hormone and get checked every 3 month.

My only complain is muscle /tendon pain, occasional itchiness, which I thought was caused by PBC. Maybe I am barking at the wrong tree...

in reply to JaneIng

Did you have a liver biopsy

JaneIng profile image
JaneIng in reply to

No biopsy. My hepatologist doesn't think it's needed. Besides I don't heal well from any surgery. Still have big scars from gallbladder surgery from 2013 and they still hurts.

donna01 profile image
donna01

Hi Jane,

I have heard of the Alpha Lipoic Acid protocol through the book "Curing Courtney."

curingcourtney.com/

And through a naturopath Dr. named Burt Berkson out of New Mexico. Are you following one of these protocols? Just curious.

JaneIng profile image
JaneIng in reply to donna01

I read that book but I did not follow the protocol because I am working with a functional doctor already. Most the supplements from my doctor do match what Courtney was taking, except sylimarin, alpha lipoic acid, Anti-oxidant amino acids and ambrotose. My recent test show some deficiency in alpha lipoic acid so I am taking it now. I will ask my doctor about the anti-oxidant amino acid and Ambrotose next time.

So far I have seen 5 functional doctors in 4 years and none of them mentioned these supplements, none of them specialize in liver either. My current functional doctor specialize in nutrition and hormone and it's helping.

I am curious too if anyone has tried Courtney's protocol and got healed.

--Jane

Rsbrown profile image
Rsbrown in reply to JaneIng

Just ordered the book. I never heard of it before . Feeling hopeful!

Ktltel profile image
Ktltel

Hi janelng,

I have taken -R Alpha Lipoic acid (300 mg) twice a day since 12/16. I also take 240mcg of Selenium once a day and 300 mg of Silymarin twice a day with meals.

I also read Dr. Bert Burksons protocol for liver patients. But, that's not why I take it as my liver isn't sick... at least not yet. This auto immune disease will eventually make my liver sick. For now though I take it for the many other health benefits.

I recently read about supplement excipients. It's worth looking into as there are supplements out there that are "excipient free." Many excipients can cause liver problems as well as other health issues. Look up Excipient Free Supplements.

I've been off my -R Alpha Lipoic acid for about 6 weeks as the excipient free formulas are a bit pricey. But I hope to get some soon. I actually think I did better on them. But, my diet of late and weight are issues I have to consider are playing a big part too. I also take LDN. Check out Lowdosenaltrexone.org

Stella ❤

donna01 profile image
donna01 in reply to Ktltel

Hi Stella,

I have a few questions...Have you had a biopsy yet or a fibroscan? Just curious. How does the Alpha Lipoic agree with you? I thought Dr Bert Burksons protocol is supposed to "rid or heal" autoimmune illness? Also, do you take it before or after Urso? Sorry for all the questions.. lol... just wondering.

Ktltel profile image
Ktltel in reply to donna01

Sorry,... I take it with food at the same time as my URSO.

JaneIng profile image
JaneIng in reply to Ktltel

Thanks for the info, Stella.

Where do you get the 'excipient free' supplement? I just get my Alpha Lipoic Acid from Sprouts supermarket. I asked the staff there and she recommended the "best Doctor" brand, 600 mg, one per day between meals. It seems working. It is fairly inexpensive. (I got it when the entire vitamin section had 25% off)

Thanks,

Jane

Ktltel profile image
Ktltel in reply to JaneIng

Hi,

If you google Excipient free supplements, several companies will come up that make different supplements. I have yet to look through them to find which one makes R-Alpha Lipoic acid. I haven't done that yet. Excipient free supplements are more expensive.

I used to order mine from Swanson off Amazon.com R-Alpha Lipoic acid 300mg. 30 capsules per bottle. $21.41 I'd buy 2 bottles that would last me a month. So that's 60 capsules for $42.82

Stella

JaneIng profile image
JaneIng in reply to Ktltel

Thanks Stella!! Have a wonderful and healthy new year!

--Jane

Ktltel profile image
Ktltel in reply to JaneIng

❤❤😊

Rsbrown profile image
Rsbrown in reply to Ktltel

I just started taking r-ALA yesterday. My blood sugar and cholesterol are very high and I am quite concerned about heart issues, wondering if my liver is not functioning well and affecting these two things. I am not overweight and excersize every day. I also am very careful about my diet so this is very discouraging. i am hoping to see results from ALA!:) My doctor is recommending LDN. I have it but have been hesitant to take because I have such a hard time with sleeping well at night and some supps I have tried have given me terrible dreams. How has your experience been? And maybe I should add selenium.

Ktltel profile image
Ktltel

Hi,

Yes, in Dec. 2016 I had an MRCP, an ERCP, and a liver biopsy. (no Fibroscan yet) My biopsy only showed mild fatty liver. It was my labs that showed PBC.

I didn't have any reaction to the Alpha Lipoic Acid at all. It's a super antioxidant. It was my understanding that the Alpha Lipoic acid regimen "along" with Low dose naltrexone was helping ones regulate their auto immune disease. Alpha Lipoic acid taken alone is still good for you but I'm not sure if taking it alone will do the same thing.

Stella ❤

RE: Alpha Lipoic Acid discussion. This is exciting! I believe I considered trying ALA years ago and was afraid to try it. I ran across Dr. Burkson's book on ALA in my library and started reading it and I'm impressed. I never heard of a test for ALA, but will ask my doctor if she would like to run the tests on me. If my results are not as good as last time, I would be willing to try taking it.

I am already taking some pretty good antioxidants. I wonder if you can take too much?

hamadruas profile image
hamadruas

I've been taking ALA (600mg per day), plus N-AC and Selenium for the last few months. Too soon to see the effect it has on my blood stats (plus I've been increased to optimal dose on Urso during that time), but the difference to my energy levels is phenomenal. I tried A-LA without the N-AC and that was still good, but the two together make the biggest difference to me. I've learnt to take them in the morning or lunchtime too, otherwise I'm ping wide awake til 2am! Basically I've got my life back.. I'm still functioning in the evening rather than wiped out by early afternoon. I also have Hypermobility syndrome and a whole raft of food intolerances / allergies, so taking Montelucast and Fexofenadine too, and I cant be sure which conditions caused the tiredness. Worth noting that ALA can lower your Vitamin B, so best to supplement that alongside.

JaneIng profile image
JaneIng in reply to hamadruas

Thanks Hamadruas.

I take ALA 600 mg per day, along with Sylimarin. I take them together between lunch and dinner. I am going to add N-Acetyle now.

I also have a lot of food intolerance and allergies.

How is Hypermobility syndrome diagnosed? I remember a orthopedic doctor once said my joints are 'loosey goosey' so I get tennis elbow easily. He did not give me any medication for it though. Just physical therapy.

Thanks for the heads up for the Vitamin B. I have double MTHFR gene mutation so I am taking Methylated vitamin Bs.

Wish you a wonderful day.

--Jane

hamadruas profile image
hamadruas in reply to JaneIng

Hi Janelng

No problem. Have you found any benefit yourself from the ALA and Sylimarin?

HMS is usually diagnosed through the how many joints go past the point they should, though in reality it is a spectrum disorder with lots of potential associated conditions, and diagnosis is not always as simple as that.. it is sometimes refered to as EDS too (Ehler Danlos Syndrome). There's a whole family of conditions that are linked.. Basically collagen is stretchier than it should be, so tissue becomes weak. In severe cases it can affect the heart, windpipe and other internal organs (especially in some of the other EDS forms, and Marfan's etc). Other people it just causes lax joints. For me it also means a high tendency towards gingivitis, lax bladder, PCOS, and a poor response to anaethestics. These are all quite common, plus things like poor proprioception.

Unless someone has complications that require medication, main thing is re-learning where the correct position of a joint it.. pushing past the point means easy injury. (Hence me no longer working as a gardener.. too many twists of the ankle and ripped hamstrings). Plus knowing when you've injured yourself and stopping that activity straight away.. often an injury doesnt become apparent through pain for a few days.

Anything you could want to know about it is on this site..

hypermobility.org/

How did you find out about the gene mutation?

Take Care

Helen

JaneIng profile image
JaneIng in reply to hamadruas

Hi Hamadruas,

Sorry you are suffering so many issues. My loosey goosey elbows are not as bad. but I do have to be careful about the exercise I do. Walking is limited to 35 minutes, otherwise my hip joints hurt.

As far as Alpha lipoic acid effect, I have not felt anything but my lab result showed lowered LFTs. However, I was taking topical hormone replacement therapy at the same time so I won't know which one contributed to it.

I had several Genetic tests. They are ordered by various doctors. The MTHFR test is the one identified C677T and A1298C variant. Vitamin B6, B9, and B12 won't be converted to the cell level efficiently if one has these variant. I am feeling a lot better after taking methylated B vitamins.

You can order genetic test from 23AndMe.com if your doctor won't order it for you. It's a lot cheaper at 23AndMe.

Good luck and have a good day.

--Jane

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