PERIPHERAL NEUROPATHY & ALPHA LIPOIC ACID

[newton45]

Greetings fellow sufferers.This is my first post, so apologies if this issue has been dealt with before, but I feel so strongly about it, I intend seeking as much publicity as possible.
I suffer terribly with burning pains in my toes & fingers & I have sought comfort from my GP on many occasions but I only get prescribed the usual non effective medications. I.e Amitryptiline, Duloxetine & Gabapentin, all of which are totally ineffective & have horrible side effects.

I have been self-medicating now for several months with ALA (600mg, twice a day) & this is the only medicine that brings any form of relief. The problem is I source this product on Amazon, & I find that the quality (& hence effectivity), varies between suppliers, & also because of stock issues, difficulty in maintaining continuity of supply. I realise that the R isomer of ALA is more effective, but it is far more expensive than the racemic blend & more difficult to obtain.
I have tried to convince my GP to prescribe it for me, even showing him research from no less an august authority than the Linus Pauling Institute, but he refuses to co-operate, to the extent I now feel relations between us have broken down. He still insists on prescribing the anti psychotic drugs as mentioned above, which I refuse to take. He also refuses to prescribe capsaicin cream, which is far more effective than anything he has prescribed.

So fellow sufferers my questions are:-
1) Why, when ALA is the first line treatment for Peripheral Neuropathy in Germany (and other European countries), do British UK doctors refuse to prescribe it? They seem locked in a time warp & only interested in treating the symptoms & not the root cause of the problem.
2) Who can I contact to try & get ALA recognised as an effective form of treatment for PN?

As an aside, since being on ALA, (for over 6 months now), two consecutive HbA1c blood tests have shown a downward trend in my blood sugars, which I attribute entirely to the effectiveness of ALA .
Surely if this method of treatment was adopted in the UK it would save the NHS a fortune?

 

[CollieBoy]

But the NHS is not about saving money,long term, It's about saving money this financial period!

 

[newton45]

COLLIEBOY SAID "But the NHS is not about saving money,long term, It's about saving money this financial period!"
"I'll take that to Avizandum!"
Type II Diabetic(Weaned off insulin via Gliclazide to D&E),Bleed stroke survivor,CKD.
Xpert diabetic Grad, completed BDEC online (I know i'm type2 but still did it)
Got 'Eat Fat' by Trudi Deakin and digesting it ! (The paper is low carb?)
HbA1c was 6.0, 5.8, 5.6, 5.7 now 5.4
Chol 3.8,Trig 0.66,HDL 1.25,LDL 2.3

Well if it isn't, then it should be. I thought they (NHS) needed all the money they can get? I am sure that they must be able to buy Alpha Lipoic Acid far cheaper than the rubbish proprietary drugs they have been trying to dose me up on. (antidepressants, serotonin reuptake inhibitors, Anti-epilepsy drugs etc.)
Why do they persist in giving me drugs that don't work & refuse to give me ones I know help!

 

[satindoll]

Unless you can persuade him to give you a private script he can't prescribe it till it has been reviewed by NICE, if you can afford to buy it yourself go for it but you are being unfair to your GP as he has to follow protocols.

 

[newton45]

I don't think I'm being unfair to my GP (see reply from Satindoll). His attitude is "I'm a doctor, you're a peasant, do as I say or I won't talk to you" He insists on treating the symptoms rather than the root cause. As we all know Diabetic Peripheral Neuropathy is caused by damaged nerves caused by glycated haemoglobin in capillary blood vessels. No amount of the 3 drugs I have been prescribed will rectify that! On the other hand, several clinical studies have shown that regular ingestion of ALA, decreases the level of blood glucose, improves capillary blood flow & can actually help regenerate nerves.
I appreciate your comment that my GP can't prescribe ALA if it is not on the NICE list. But that's another story. Isn't NICE just another governmental QUANGO, all out for itself & not looking out for the patient at all? In the same league as OFWAT, OFGEN, OFCOM, in my book. Quite happy to have their jollies on some tropical island on the other side of the world, but what have they ever done for the likes of you & me? De Nada, Zilch.

I don't mind paying for my Alpha Lipoic Acid, I just wish I could buy it from a reputable supplier with a guaranteed analytical accuracy. I suspect that some of the supplies I have purchased are mainly methyl cellulose & gelatine.

Also I was hoping that by my post other sufferers could report favourable (or not) results from taking ALA

 

[VinnyJames]

@newton45 Do you have any links to the science behind ALA?

 

[VinnyJames]

Got it - a meta analysis but not favourable overall in terms of the efficacy of ALA.


Mijnhout GS, Kollen BJ, Alkhalaf A, Kleefstra N, Bilo HJ; Kollen; Alkhalaf; Kleefstra; Bilo (2012). "Alpha lipoic Acid for symptomatic peripheral neuropathy in patients with diabetes: a meta-analysis of randomized controlled trials". Int J Endocrinol (Meta-analysis) 2012: 456279. doi:10.1155/2012/456279. PMC 3272801. PMID 22331979.

 

[newton45]

Hi Vinny James

Try this one for starters:- http://lpi.oregonstate.edu/infocenter/othernuts/la/

Or how about this one? http://www.lef.org/magazine/2007/10/nu_lipoic_acid/Page-01

This is another link to further independent studies http://examine.com/supplements/Alpha-Lipoic+Acid/

Here is a link endorsing ALA as a treatment for PN in Germany. http://www.diabeteslibrary.org/View.aspx?url=ala_Peripheral_Neuropathy

Here is a link from the University of Maryland. http://umm.edu/health/medical/altmed/supplement/alphalipoic-acid.

That ALA is a powerful antioxidant capable of mopping up free radicals is beyond dispute. The evidence that it increases insulin sensitivity is compelling. The fact that it has relieved my PN, where all other drugs have failed has convinced me. For what it costs I am prepared to carry on taking ALA long term. I just wish I could do it with my GP's blessing, but he thinks it's all hocus pocus, eye of newt, toe of frog, witch doctor medicine.
Also as mentioned in a previous post, it is difficult to source a supply of the R isomer ALA with continuity of supply & a guaranteed chemical analysis.

Regards

 

[Living-by-the-beach]

Funny here in the US ALA is about $8/bottle.








Advertising link removed. CC

 

[Bluenosesol]

Funny here in the US ALA is about $8/bottle.








Advertising link removed. CC

I used to buy from US, but since they started hitting us with import duty I can buy cheaper on Ebay UK

 

[Bluenosesol]

i take ALA 600 with 500mg of Vit C and 3 Evening Primrose Capsules

 

[newton45]

I am really interested in the views of other members about their experience of ALA, either as a stand alone supplement, or in conjunction with other supplements, such as Bluenosesol in the post above. What positive effects are there? Has it reduced glucose levels? Has it reduced pain due to PN.

I take ALA in conjunction with Acetyl L Carnitine, & apart from the reduction in pain due to my PN, it also has reduced my glucose levels over the last 2 HbA1c tests. Also I feel much better, -sharper memory, more energy.

There's got to be something in it - hasn't there? Or am I kidding myself?

 

[Living-by-the-beach]

I don't think you are kidding yourself. I ran out of ALA and my neuropathy became very spiteful. I mentioned it to my local friar and he said have you given up on ALA? Then the penny dropped. I hurried and got myself some ALA.. I don't want to be without it..

 

[newton45]

Glad to hear that some one else is getting some benefit from ALA. I can't understand why it's not more popular. Notwithstanding its ability to help diabetes & its complications it appears to have rejuvenating qualities as well. I'm not saying it's the elixir of youth, but I certainly feel much better when I take it, & like you if I run out of supplies the pain comes back & I don't feel so energetic.

 

[sweetpea2016]

Hi. Have just been reading these posts on Alpha Lipolic Acid.
I'm a T2 on insulin 20 years. I think I am going to try and take ALA the "R" version, 600mgs as the PAIN from the PN is horrendous, especially at night OMG ! despite the taking of Tramadol (CD) 200mgs QDS, Amityript. 25TDS & Duloxetine 60mgs B.D
Can anyone tell me approx. how long after taking it at 600mgs, any actual benefit became significantly noticeable ? Thanks

 

[Living-by-the-beach]

Hi. Have just been reading these posts on Alpha Lipolic Acid.
I'm a T2 on insulin 20 years. I think I am going to try and take ALA the "R" version, 600mgs as the PAIN from the PN is horrendous, especially at night OMG ! despite the taking of Tramadol (CD) 200mgs QDS, Amityript. 25TDS & Duloxetine 60mgs B.D
Can anyone tell me approx. how long after taking it at 600mgs, any actual benefit became significantly noticeable ? Thanks

@sweetpea2016

It has happened twice where I forgot to have my 300mg tablet of ALA (or run out) and the pain can become spiteful. I am doing an excessive amount of exercise daily 18miles /day of cycling. Between the ALA and the cycling, life is livable.

additional edit 11/21/2016 I took the ALA usual kind not the -R variant as that was twice the price of the cheap one. I only have ever taken 300mg/day.

 

[Freema]

Hi. Have just been reading these posts on Alpha Lipolic Acid.
I'm a T2 on insulin 20 years. I think I am going to try and take ALA the "R" version, 600mgs as the PAIN from the PN is horrendous, especially at night OMG ! despite the taking of Tramadol (CD) 200mgs QDS, Amityript. 25TDS & Duloxetine 60mgs B.D
Can anyone tell me approx. how long after taking it at 600mgs, any actual benefit became significantly noticeable ? Thanks

it doesn´t help everyone, and it is important to take the right kind and in high enough doses

like at least 600mg of R-alpha-lipoic-acid

 

[Juicetin]

Rather belated reply....all of the studies undertaken on neuropathy , particularly in Germany, have involved the 50/50 mix of s-ala and r-ala. These concluded that a 600mg a day supplement was probably optimal. If taking the pure r-ala variant a lower dose can be as effective because of it's greater bioavailability . 600mg a day of pure r-ala should not be necessary and would be very expensive.

 

[newton45]

Who really cares what so called experts & research papers say?
What is important is what works for you!
I have been taking ALA for over 2 years now, together with acetyl L carnitine. My blood sugars are normal & my PNP has all but gone.
I have also changed my GP to one more sympathetic to natural medication, & several months ago I added dandelion root extract & curcumin to my daily regimens.
I am fitter & feel better than I have done in years, & I am 72 years old.
I believe that type 2 diabetes can be controlled even reversed without recourse to harsh medication.

 

[BaliRob]

Neuropathy - you have to learn to live with it no matter how painful. I have Type 2, Congestive Heart Failure and Kidney Disease. Taking the last problem first - my specialist and I subscribe to the theory that my kidney problem was caused by taking Quinine Sulphate for over eight years continuously for the world's worse leg cramps (90 patients died in the US for exactly the same use of QS) and looked for another remedy - and, thanks to a member of DUK, I was introduced to Magnesium Citrate which seemingly has reduced my cramps by about 95%. The connection to the subject of this thread will become patently obvious shortly.

As a result of the foregoing conditions I have badly swollen feet and ankles continuously - only Lasix stops them from becoming Elephantitis hahaha. I have such severe pain all day long, so much so that I wish I could have my toes amputated. But, I find that my brain has learned to cope with this and I continue to have a reasonable daily life - with no pain killers.

But at night - my life becomes a living nightmare. As soon as one's body becomes prone the Neuropathy is magnified 500% and increasing in intensity as the blood and platelets reverse their journey back up the legs to the body and then to the top of my head. After one hour of trying to get to sleep - I am ALWAYS on fire. My toes hurt so much as they adjust and feel as if they have been struck with a hammer. My hands and fingers burn like hell also and tend to cramp up.

The only way I can get some relief is to try to sleep sitting up leaning against my pillow against the headboard.. The burning subsides by about 5 am and I can get some sleep. But on many occasions the burning persists so much that I am forced to take painkiller in one form or another. Now be warned - The Lancet has recently published a finding concerning Ibuprofen - this, for 90% of the time helped me to get some blessed sleep. But I am told that it is now dangerous if used regularly (just like Quinine Sulphate above) especially if one has a heart condition like my CHF.

My last hope medication is now Methampyrone 500mg combined with 2mg Diazepam - which is so effective that is can be rather frightening not to know one is falling asleep and wake up hours later than expected. Someone said I should try half a dose - Hey! same result but without the sledgehammer and pain subsided and no need to shout at the wall in pain (live alone).

One theory I am working on is this - Erectile Dysfunction is treated by a number of chemicals - but also by some very good herbal products - TO ASSIST BLOOD FLOW TO THE NETHER REGIONS - something Neuropathy refuses to allow - efficiently at least - all that pain QED. I have noticed that one of these herbal products if taken every day or every two days seems to very much reduce my 'Burning in Hell' one hour after laying down to sleep. I believe it to be essential that we all try to avoid chemical prescriptions- Statins is a
good example - when diagnosed I was given the usual Metformin and Simvastatin - but the moment I came
off them after 8 years - gone were all my shoulder and joint pains at night - Hooray!!

Finally - the point of this missive - IT IS NO USE COMPLAINING no matter how painful the condition - we must adjust by whatever means and try TO LEARN TO LIVE WITH IT.