Any Results with Alpha Lipoic Acid?

Symptoms and Treatments Complementary CIDP
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First - thanks for the warm welcome. It's truly wonderful to have a resource like this forum.

Because I've not received any comment from forum folks specific to Alpha Lipoic Acid (ALA) nor seen any recent forum discussions on same, I'm repeating my original request for information, to wit:

Three weeks ago I received a diagnosis of possible CIDP from my neurologist. He has been investigating (via EMG and NCS testing) the cause of the growing neuropathy in both of my feet. It has been advancing since I underwent successful chemotherapy for breast cancer in 2010. His first diagnosis was serious axonal nerve damage in both feet. After a further look at the test results, he felt there was a strong possibility that we are dealing with CIDP. -- which of course, I had never heard of.

I had already begun taking 100 mg of ALA the previous week in the hope of some relief, and my early results have been very encouraging -- diminished stiffness and some increased feeling in both feet.

After hearing the possible CIDP diagnosis I undertook further internet research and discovered a recently completed double blind study re the effectiveness of ALA in treating CIDP. This 16-week study was conducted by a doctor at the Oregon Health and Science University and was completed last fall.

I am now patterning my ALA intake after the dosage used in that study: 600 mg a day, which I break up into 200 mg with each of three meals. This continues for four weeks, then increases to 1200 mg a day for 12 weeks -- which may be more than my stomach/body can take.

The initial good results from ALA have continued -- my feet feel much better, although my right leg has developed some aches which have me concerned. Curious that that the feet are improving and the previously unaffected leg is becoming a bit of a problem. Does re-growing the myelin sheath hurt?

I'll probably go with the spinal tap soon to either confirm or reject the CIDP diagnosis.

In the meantime, has anyone else used ALA to treat their CIDP? If so, was it successful? To what degree? Unsuccessful? I'd really like some feedback.

I also sent an email to UHSU re the results of their study but have received no answer.

Any and all information anyone can send re the use of Alpha Lipoic Acid for CIDP would be most welcome.

And just in case you wonder, I just received another "You still are cancer-free!" from my oncologist -- hoorah!

Thanks in advance.

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My husband did try ALA for a short time with no results ,he got a headache also, but we didn't break up the dosage he took it all at once.

His best results to date after his diagnosis is ...IVIG for a couple days once a month.

I might revisit the ALA if there are more sucess stories at a lower dose.

thanks for the info.

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Hi ,

My son has been taking the Neurothopy Support Formula it has the R-ALA in it along with the combination of B,A and D I would research each vitamin and decide if it sounds good for you to try. My son has had tingling and numbness in both hands and feet he said he thinks it works and subsides the intense feelings also he is on IVIG every 8 weeks so far this is working for him. I would keep taking it because the risk is low it seems to be tolerated well and it sure beats other options like prednisone.It should be R-ALA look up the difference. Congrates on your Cancer free . diagnosis and hope your CIDP stays in a mild stage God Bless

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How much R-ALA is your son on??

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Good Morning,

I have not heard of ALA treatment for CIDP...I was diagnosed about 12 months ago with it, and have a team of neurologists at UTSW (University of Texas) hospital in Dallas, TX...and have definately had good days and bad...my treatment consists of weekly Plasmapharesis through two internal permanent ports (which is intended to "calm" the immune system so the nervous system can heal...as well as taking an immuno-suppresant drug called Cellcept...along with several other drugs for neuropathy.

You asked if regrowing the myelin sheath hurts...the only thing I can describe is that over the last year, I will get "surges" of sensation and tingling...which could be the sheath regenerating. I'm only 36 with 2 young kids, so I'm willing to try anything...does ALA help with neuropathy/nerve pain?

I wish you the best of luck, and I had tons of questions in the beginning, so please don't hesitate to ask :)

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Wow! Thanks to everyone who has responded.

For now, I'm still debating whether to get the spinal tap or not. It has its own perils, plus I had one when I contracted polio at the age of 12, the memory of which still terrifies me at the age of 77 -- and I'm generally not the phobic type. To delay the firm diagnosis given via the spinal tap may allow the CIDP to advance -- so it's a tough decision. I think I shall wait another week to see if my good results from the ALA continue.

I wonder if, even with good results from ALA, the CIDP could be continuing its assault on my system? That's one of many questions I need to ask my neurologist.

Today I am researching the difference between the ALA I get from a health food store with R-ALA. Will post if and when I have answers.

To answer the question of whether the ALA helps with the neuropathy pain -- yes, although I didn't have much pain to begin with. My feet just simply felt very stretched in the instep, and I lost (and regained and lost again) feeling in the balls of my feet and some toes. The lack of feeling soon extended in some portions of the feet up to and around the ankle bones -- and that's when I began consulting with my neurologist.

So far, the results from the ALA have been uneven, but my feet now feel much less stretched and my toes tingle. Also walking in shoes (as opposed to bare feet) used to feel like there were small rounded rocks under the inner soul of both shoes. That disappeared in both feet yesterday. Can't be bad, right?

The first pain I've had began in my right leg about 6 days ago, and it isn't much. Just some linear aching along the outside of both the calf and thigh, particularly when I lay on my right side. There's also some tiny pain in the lower hip joint and in my knee on the right side. Rubbing helps, as does turning over onto my left side.

Possible red herring here, but I'm wondering if this whole mess could in some way be connected to the polio I had when I was 12. I was lucky enough to walk out of Los Angeles County Hospital with minimum damage, but I know symptoms often reoccur many years later. Another thing to research. Sigh.

Best to all of you, and thanks again. Keep the advice coming; it's lonely out here in CIDP land.

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I have been taking ALA for almost 3 years. I have used both forms, ALA and the R version. Right now I take 600 mg 2 times a day. It really helps me. I also take benfothiamine which is a fat soluble form of thiamine that helps also. I found a web site called "beating neuropathy". He specializes in treating neuropathy and has lots of info about using diet as well to help control the pain. I went gluten free, which helped. Then I went to a naturopath and she recommended the paleo diet. Since going on that diet the 1st week in Jan. I have had the most dramatic results. Last week I bought a small bag of Lays classic potatoes and within a half hour I had a splitting headache and shortly thereafter the numbing, burning and tingling came back. It wasn't at the same level as before, but it came back. I stay away from all grains, dairy, and caffeine. I drink lots of spring water, and ginger tea with a teaspoon of honey and juice from half a lemon.I buy organic when I can find it and afford it and stay away from all processed foods. For now I feel closer to normal than I have since my symptoms 1st started 4 years ago. Of course none of us know how this disorder will affect us down the road, but for now this is what is working for me. I also take fish oil, tumeric, vitamin d3, and b complex. I take cellcept which really upsets my stomach so I take prilosec to control that. I get the IVIG every 3 weeks. My doctors goal is to start stretching out the time between my infusions. That works for me!! Hopefully that will happen with all my improvements. Of course you do need to check with your doctor before trying anything new.

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Hi busybee, I had a spinal tap last year. I was quite nervous because of all the stories. However it did not hurt one bit - they pumped me full of local anaesthetic and it was fine. So I would say they have improved how they do it somewhat over the years - that was in Melbourne Australia. Good luck with your decision and glad to hear about now being cancer free. Thanks for the post - there have been lots of posts with interesting and useful info

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It sounds as though you have to work through more than a few possible culprits that could be causing your symptoms. I am also a breast cancer survivor, it has been almost 18 years! I had a spinal tap last year and it wasn't bad at all, I would take that off your worry list. I have not heard of ALA but I am familiar with OHSU and they have a very good reputation.( I lived in Oregon most of my life) Treatments work differently for everyone, so if you find something that works for you YEAH! I used to think the increased tingling sensation was nerves coming back, for me I realized the tingling was from increased activity causing me increased pain. Keep writing, no one is alone here. Peace Nancy

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Hello Busy Bee, Thank you for writing here. You mention several options for treatment that I have not heard of. All of this is new to me so I'm soaking up information like a sponge in here, need to start taking notes to share with my dr. I just had a spinal tap a few weeks ago. I also had fears of the procedure, We are talking about the spine after all. But they gave me a local, and although I could " feel " it, it was not bad. I relaxed and the dr. talked me through everything as he was working and it went very well. He did tell me that my extracted fluids were clear, which he said was a good thing. He said some are cloudy and some are colored and that indicated an infection somewhere, so being clear that was good. The process took about 15 minutes, then I had to lay flat for about an hour afterward, he said to prevent a headache. I did feel a bit off the next few days, nothing specific, just off. I took it easy and rested but was then fine... all things considered. Don't fear the spinal tap, it could give you long awaited answers you are looking for. Keep us informed and Best of wishes. ~ Tammy ( aka Sis )

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I have been taking 4x600 mg ALA for 5 years as doctor saids. Always dissmising its profits, thinking my good performance was related to Imuran. Having trouble with the ALA supplies I had to stop for a month, and after 3 weeks started to have severe pain and lack of force on both arms and hands. My CIDP is related to anti-MAG and anti-GD1A antibodies tested on my blood every two years (1/10.000 to 1/15.000 titles).

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-ALA- took for DM neuropathies. Poor results. ALA may solve sensory neurpathies, however CIDP is mostly a motor neuropathy at first,

-CIDP- Definitive diagnoses of this demyelinating disease is if IvIg, PE or steroids work.

-Lumbar puncture is a standard test that determines protein in your spinal column and is no big deal.

- It is rare to have axonal damage from the first presenting symptoms of CIDP. Here is an article about axonal damage:

http://neuromuscular.wustl.edu/antibody/motpn2.htm

I would not second guess your neurologist. Take any advice here with a grain of salt, as CIDP and other diseases of the lower neurons are varied and specific to each individual.

Certain foods will enhance the production of your body's ALA enzyme cascades, as will daily excise.

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Thanks for the answer.

The anti-GD1a is referred as axonal, and the anti-MAG as demyelating.

My doc said lumbar puncture is not necessary when one has gangliosides antibodies.

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Hi Bee, I have been reading your posts because I am very interested in the ALA and if it helps. I know you wrote about the polio but one thing you said that screams classic CIDP to me is the feeling that you have rocks in your shoe. That is a guideline for me when apI know my symptoms are progressing and when that feeling is gone, I know I am doing well. I know you spoke about a spinal tap (not the horror it used to be and is barely ncomfortable now wo have no fear) but
I did not see if you had an EMG? That is really a very difinitve test for CIDP and if your neurologist agrees, I would have that first. I had no extra protein in my spinal flud but was dx by EMG. I am very interested to follow your posts about ALA. Thank you and good luck. I hope you habe something easier that can be taken care of more easily. CIDP is a tough road.



Pablo said:

Thanks for the answer.

The anti-GD1a is referred as axonal, and the anti-MAG as demyelating.

My doc said lumbar puncture is not necessary when one has gangliosides antibodies.

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hi, I too had found the study ALA from OHSU. At the time I was living about 6 miles from OHSU. They were looking people to participate in the study. Since I had just been dx and met their ctriteria for the study I followed to the instructions to apply, but never heard anything back. I asked my neuro about it and she said it has been helpful for some who have neuropathy. She recommended 600 mg a day. I took that for several months and it really did help. Then I began having stomach issues. I tried switching to the other R form of ALA and had the same issue. I stopped taking it. Now I take cellcept, get the IVIG every 3 weeks. I also follow the paleo diet which many others have found helpful. That makes a huge difference. If I stray from that diet all the pain in my legs and arms come back, as well as the brain fog and the neuropathy in my feet. If I follow the diet and the treatment plan then I do okay. I would ask your neuro. We are all different and all seem to respond differently. For me it was trial and error to find out what works. I am sure others in this group will say the same thing. Good luck. This site has been helpful for me. I also eat organic when I can and had a veggie garden last year. I will take strawberries and blueberries right out the garden any day over what is sold in the stores.

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I called the university in Ohio a couple of years ago and was lucky enough to get one of the research team. They never did the study because they couldn't get enough participants. Oddly enough, I was told that the lead neurologist doesn't recommend it for his patients, but some of his colleagues do.

I'm taking R-ALA, but only for the last month or so. Too early for results. I'm taking Dr Daniell's formula which I got on Amazon. For a limited time, they are offering a free bottle in exchange for an Amazon review. I have high hopes for it and also for NAC which helped me years ago when I took Cerefolin NAC which was by prescription.