Joined: Mar 2008 Gender: Female Posts: 1,835 Karma: 60
Treatment for PN finger tips, legs & feet LAC « Thread Started on Oct 23, 2009, 8:11pm »
I had severe PN in finger tips, legs and feet, for the last few weeks.
A week ago, I started on 6000mg + L-Carnitine daily. The PN subsided.
Today, I stumbled on some sites concerning LAC ibeing helpful for PN, and that six months post treatment, there was improvement in nerve fibers.
PN is poorly understood, and from what I read could be caused by some metabolic mitochondrial dysfunction affecting fatty acids chain transport in mitochondria, which of course, is relevant with PN, or sensory neural death (which will heal by means of new neural circuitry) or cutaneous sensory dysfunction,
"There are currently no approved treatments to repair or regrow damaged nerves. One study has shown that acetyl-L-carnitine (Alcar) at a dose of 1500mg, twice daily, can lead to nerve improvement. Acetyl-L-carnitine can be prescribed on a named-patient basis. Some clinics in the UK already use this treatment routinely.
Some clinics in the UK already use this treatment routinely. Research into a synthetic human Nerve Growth Factor (hNGF) in the US which looked promising has since been put on hold and the development has been stopped. http://www.i-base.info/guides/side/neuropathy.htm
Joined: Jun 2008 Gender: Female Posts: 343 Location: california Karma: 15
Re: Treatment for PN finger tips, legs & feet LAC « Reply #1 on Oct 24, 2009, 2:41am »
Beebs!
L carnatine and alpha lipoic acid plus a bit of vitamin C are about the only things I've consistently taken - based on some reading and blind faith in 2 experienced doctors who both said they may help nerve endings.
Not to say I don't take this and that inconsistently.
L carnatine and alpha lipoic acid plus a bit of vitamin C are about the only things I've consistently taken - based on some reading and blind faith in 2 experienced doctors who both said they may help nerve endings.
Not to say I don't take this and that inconsistently.
Your research is very much appreciated by all.
Well done MJ, continue with those, I am still struggling with Vit C. I am able to take it in Ayurvedic form, not ascorbate acid, and sometimes, in tabs, without bioflanoids ..
Re: Treatment for PN finger tips, legs & feet LAC « Reply #3 on Nov 17, 2009, 1:59am »
acetyl-L-carnitine has been helpful to me also and is a continued part of my supplements...
I also found that I was (without knowing) eating lots of high carnitine containing foods, meat for one, and surprisingly avocados! I typically eat 1-5 a day and ALWAYS feel better when having more.
I've had PN a lot since floxing (never for years and years before - except for a while after my 'first' (suspected, not confirmed - didn't know what was happening to me then, no internet, and don't remember what the antibiotic I was given was) floxing ~18 yrs ago...
acetyl-L-carnitine has been helpful to me also and is a continued part of my supplements...
I also found that I was (without knowing) eating lots of high carnitine containing foods, meat for one, and surprisingly avocados! I typically eat 1-5 a day and ALWAYS feel better when having more.
I've had PN a lot since floxing (never for years and years before - except for a while after my 'first' (suspected, not confirmed - didn't know what was happening to me then, no internet, and don't remember what the antibiotic I was given was) floxing ~18 yrs ago...
Interesting about AVOCADOS, what a find. I will try this too, if I can tolerate.
And your are right, according to my nutrition books, 145 g - contains: calcium, fat, sat fat, mono fat, poly fat, protein, carb, fiber, B1, B6, C, E, folic acid, potassium, Magnesium..
wOw, this is so kool, just reading about avocados:
Some compounds help to:
Pulp Lower cholesterols (supported by research) Mood swings Collagen PMS Hair growth on head Heart Anti carcinogenic Poultice on wounds Circulation
Bark is used to treat: Digestive issues Coughs
Rind used in Guatemala Deworm
Seeds Diarrhoea
Leaves stimulates menstruation Gas bloatedness Brings down Uric Acid
Oil of Avocado Good for skin elasticity Hair growth (head)
BEEBS... Did I understand you correctly? Did you say 6,000mg of Acetyl L-Carnitine a day?
My bottle comes in 500mg caps and I've been only taking one each day and have had no effects yet on my PN in my feet and legs.
Maybe I'm just not taking enough? 6,000 mg. would be 12 capsules of my brand of A-L-C which comes in 500mg caps.
How long did it take before you started to feel some lessening of your PN pain after you started taking the A-L-C?
Thanks dearly for any help you can give me on this. My PN is BAD!!!!
Hey Cipain: sorry (you know what that means), I just now remembered!!! I will email you more info.
Eric: your symptoms were exaclty like mine for about over two years, perhaps three. It progressed till, near to being comatosed, and yes, it can lead to coma or sudden cardiac death, heart failure etc....
I believe some of us developed metabolic/mito/syndromes, which can be acquired through medications. It is relatively new field of medicine, and some papers do write about this and the connections with meds. grrrrr I kept telling doctors about those severe symptoms, relieved only when eating lamb all day!! When I told my neurologist about those syndromes, he said he knew nothing about those, and never even heard of them. I gave him all the info, and he said to continue with L-Carnitine.
YEsssss, I took/taking 6000 mg to 8000 mg daily. It stopped lethal paroxysmal arrythmia, (i could feel heart going into spasms, 200 times or more a day, but I still have others types of arrythnia), stopped hunger as Eric described, stopped the PN (within three days), stopped the confusion, weakness (still have, but different trigger), associated breathlessness, (have other types of breathlessness), do not have to eat large quantities of lamb for breakfast, lunch and dinner, had put lots of weight, started to loose again!!, was almost in a coma - revived! I honestly, thought I was going to DIE, and so were people around me.
The PN was so severe, I could no longer feel my arms, my hands, my fingers, my legs and my feet. It was burning, tingling, zapping etc...It was horrific.
I looked grey, pale, shaky, frail, fragile, legs were shaky, totally breathless upon slightest exertions such as sitting down, lying down and hoisting myself, I was so weak, that these activities made me breathless.
The bottom line, is some us have no choice but to eat high protein from meats, and avoid vegetable proteins. I can't even digest a pea!!!
My neurologist approves, and told me it was fine to continue.
All those symptoms resolved within three days, and improvement, concerning these symptoms, thereafter.
I am now cutting down on the L-Carnitine, but will up the dosage if those symptoms return. I am now taking a maintenance dose of 6000 mg per day.
This is an acquired mitochondrial/metabolic syndrome, following medication. It can happen years later. Common triggers are PHYSIOlogical stressors such as cold weather, long period without eating, etc...\
I also noticed I have problems with taking EPA/DHA, GLA, and other other fatty acids. There seem to be a problem with metabolizing fatty acids, and protein. It increases seizres, causes some of type of breathing depression/distress and other symptoms.
Those of you who have those symptoms, please, you have no choice but to eat meat protein, preferably lamb or beef. I was a vegetarian pre-floxing, but had NO choice, but to eat protein from meats. Yuk ..
We simply do not know all compounds from lamb or beef, and my reasoning is that, if my symptoms improved (temporarily) from eating these, then, I should continue. It was no longer sufficient, and symptoms progress. I read up and went through my symptoms very carefully, before putting myself on high dose of L-Carnitine.
For a diagnosis of one of those metabolic/mito syndromes is very difficult. Tests are not accurate. Having GA will kill you, if you don't request special types of anesthetics. I will write longer about this in the next post. Tests are very comprehensive, includes, pyruvate, lactic acid, muscle biospsy, etc...
The problem is that with L-Carnitine, it is almost impossible to define. Serum vary from muscle biopsy, from urine, and liver!! There is little consensus yet regarding these. I will post some research concerning these today, under a different thread.
Remember, those symptoms I described are very very severe, and includes various types of hypo/hyperglycaemia, PN, lethargy. What I mean by severe, is when it reaches the point, where you so debilitated, that you can no longer function. But why wait till you reach that point?
I am having a muscle biopsy in a couple of weeks, for immunuhistological tests, finally. This is by far not enough, and rarely reveal pahtology. Due to budgetary cuts, I was only offered in addition - white cell enzymes, urine organic acids, serum acylcarnitines, and if I am brave, CSF with lactate and pyruvate levels.
I can't emphasize this enough, those of you, who are always hungry no matter how much you eat, hypo/pyperglycemic, lethary, confusion, arrythmia, etc... please, up your intake of red meats, take L-carnitine, and see if it makes a difference. If it does, it is likely you are suffering from one of those metabolic syndromes.
Your problem may be related to Q10 or Carnosine or other, read up and carefully, analyze your symptoms, how, when, affects from weather, temperature, physical exertion, etc. be comprehensive.
Avoid contrast dye, this will exacerbate your symptoms!! Avoid all meds, and vaccines.
Ooops, I just forgot to add, that, if your symptoms and PN are because of amino acids, such as Carnosine or L-Carnitine, then taking Vit B12, will not relieve your symptoms.
The protocol for these syndromes are mainly amino acids, Q10 or analog Ubiquinone and other vits and supps, avoidance of oils, and whatever else, your neurologist can think of which may help.
Pharmaceutical companies are developing new drugs targetted at those syndromes, frankly, I am not in the least interested, it was all their crap that did this to me ... They are so behind when it comes to biochemistry, biomolecular medicine, that with their aggressive approach to disease, I am not holding my breath.
PS. avoid going without red meat protein, for more than three to four hours, and if you see a difference, concerning severe hunger, you can more or less deduct it is one of those mito/metabolic syndrome.
Re: Treatment for PN finger tips, legs & feet LAC « Reply #7 on Nov 22, 2009, 2:06pm »
BEEBS.....Could you please explain more about the amount of acetyl L - carnitine you are taking???? Is it 6000mg a day as you had stated before?
I really need some help on this. My PN is REALLY acting up lately and I need your correct info.
You wrote: "sorry....you know what that means" But I don't know what that means. Please email me at - kahoona@yahoo.com and let me know the scoop on A L-C please? Thanks. cipain.
BEEBS.....Could you please explain more about the amount of acetyl L - carnitine you are taking???? Is it 6000mg a day as you had stated before?
I really need some help on this. My PN is REALLY acting up lately and I need your correct info.
You wrote: "sorry....you know what that means" But I don't know what that means. Please email me at - kahoona@yahoo.com and let me know the scoop on A L-C please? Thanks. cipain.
Cipain: Because of the severity of all my symptoms, and own deduction that it was related to L-Carnitine, I started on 6000 mg then up to 8000 mg. As I stated to improve, I went down to 4000 and keep tweaking, adjusting to my symptoms.
OK, you sent me an email asking a few questions, I forgot to reply. Will send you email in details concerning NP and various approaches.
In my case, it was related to L-Carnitine, for others, it could Vitamin B12, it could be L-Carnosine or it could be pain killers which don't work for long, but instead, cause more damage to small nerve fibers, causing more pain. What pain killers do instead, many alter moods, which makes pain bearable up to a point.
The reason I am writing about pain killers, is because, it pains me to see some of my close friends hooked on them, worsening and developing more symptoms.
Anyway, will email you the little I know, hoping it will help ya. Hang in there, there has to be non-toxic ways of dealing with your PN too and find what is appropriate/specific for your symptoms.
Apparently, pain killers are the biggest killers.
See this article:
Prescriptions now biggest cause of fatal drug overdoses 09/30/2009 07:12 PM By Liz Szabo, USA TODAY
Addiction to prescription painkillers which kill thousands of Americans a year has become a largely unrecognized epidemic, experts say. In fact, prescription drugs cause most of the more than 26,000 fatal overdoses each year, says Leonard Paulozzi of the Centers for Disease Control and Prevention.http://content.usatoday.com/topics/topic/Holly+Springs
From Dr Mercola: The number of overdose deaths from opioid painkillers — opium-like drugs that include morphine and codeine — more than tripled from 1999 to 2006, to 13,800 deaths that year, according to recently released CDC statistics.
Remember the Reagan-era ads, “Just Say NO!” Well, since then, street drugs have taken a definitive backseat to a far greater threat – prescription drugs, especially pain killers.
They’re typically used legally, eliminating the stigma of being a junkie. You don’t need to do business in the shadows to get your fix anymore. You just refill your prescription and pick it up at the nearest pharmacy where no one looks at you crooked.
Time to Raise Pandemic Level 6 Warning on American Drug Paradigm
According to Robert DuPont, a former White House drug czar and former director of the National Institute on Drug Abuse, "The biggest and fastest-growing part of America's drug problem is prescription drug abuse. The statistics are unmistakable."
The CDC should take notice of these statistics and raise a Pandemic Level 6 Warning for the use of prescription drugs – it’s clearly killing FAR more people than the swine flu ever will. http://articles.mercola.com/sites/articl....Swine -Flu.aspx
Joined: May 2009 Gender: Female Posts: 99 Location: California Karma: 7
Re: Treatment for PN finger tips, legs & feet LAC « Reply #9 on Nov 27, 2009, 3:40pm »
Ok Beebs, I accidentally bought L-Carnitine instead of Acetyl-L-Carnitine and then I opened the bottle so that I can't return it! Will it still be beneficial for me to take the LC? Why is ALC better for us than just LC. I did try to read up on the differences but I wasn't sure about how it relates to floxies PN issues specifically.
Have I told you lately how awesome you are? I rely on you so much & I am thankful that you are on here helping all of us all the time. We're lucky to have you!
Ok Beebs, I accidentally bought L-Carnitine instead of Acetyl-L-Carnitine and then I opened the bottle so that I can't return it! Will it still be beneficial for me to take the LC? Why is ALC better for us than just LC. I did try to read up on the differences but I wasn't sure about how it relates to floxies PN issues specifically.
Have I told you lately how awesome you are? I rely on you so much & I am thankful that you are on here helping all of us all the time. We're lucky to have you!
Hugs~Moxie
Thanks for the compliment, (I can be a pain in the butt at times, honest). BTW, you are awsome, brave, strong and a fighter!! Compassionate, empathic and sincere. I like that. Great attributes to get you back on your feet!! We are glad to have you on board.
I am taking L-Carnitine from Lamberts. The others didn't agree with me, caused an allergic reactions. It could be fillers, I don't know.
I chose L-Carnitine because :
1. it helps with metabolic of fatty acids transport to the mitochondria, good for ATP/ADP conversion, good for cellular energy, less weakness and more energy. 2. Insulin sensitivity 3. Neuropathy 4. Cardiac and vascular health 5. Metabolic Syndromes ( we probably have this as discussed) 6. Helps with Kidneys 7. Helps with liver, reduces amonia (sometimes urine can smell like asparagus) 8. Enhances Immune System, CD4, so, does not make it too active and elevates cytokines (bad for us) 9. Cognition, good for that too. 10. Elevates sperm count 11. Good for hyperthyroidsim 12. Cherry on the cake, helps with weight loss
I read recently about Gamma-butyrobetaine (GBB). What I like about it is that it is a precursor to L-Carnitine. Apparently, it increases L-Carnitine, which your own body would manufacture, by 300% in all tissues. They key here for me is "all tissues." But, I need to read up more on this, it is fairly new, and would rather wait a little.
From what I read, L-Carnitine and Acetyl Carnitine do the same thing. The only difference worth noting is that Acetyl improves mental function and apparently also helps with moods.
There are different opinions between both, but mostly they do the same.
Overall, I am very pleased with taking high dose of L-Carnitine. I have no idea if goes in all tissues or not, difficult to measure. Measuring Serum, muscle biopsy and liver biospy all differ apparently. All I know, is it worked!!
Joined: May 2009 Gender: Female Posts: 99 Location: California Karma: 7
Re: Treatment for PN finger tips, legs & feet LAC « Reply #11 on Nov 27, 2009, 5:08pm »
Well thank you
So on the bottle it recommends taking 4 500mg pills per day. How many do you think I should start out taking? I want to make sure that I'm taking enough, I know that you said that you had read that 1500 mg 2x per day helped with nerve damage. Should I start off taking less and work my way up to that or would it probably be safe to just go for it? I'm excited about this, I hope that it helps!!
So on the bottle it recommends taking 4 500mg pills per day. How many do you think I should start out taking? I want to make sure that I'm taking enough, I know that you said that you had read that 1500 mg 2x per day helped with nerve damage. Should I start off taking less and work my way up to that or would it probably be safe to just go for it? I'm excited about this, I hope that it helps!!
Thanks again, Moxie
Have you tried L-Carnitine before? If not, then, best to try on very very low dose and increase. I took some last year, started on very low dose and increased to 1000 mg - zero side effects. I stopped after six months. Symptoms started again progressed to seriously severe!
A few weeks ago, whilts very very severe, I started straightaway on 8000 mg, I thought I was dying ...
I stayed on 8000 mg for two weeks. I am taking less now, tweaking, depending on days. How breathless, how weak etc.. But, I am thinking to start again on 6000 mg, and remain on that dose for a few months. My neurologist told me to continue until review after the muscle biopsy, results, which will take three months from mid-December.
Wise move to start on lower dose and increase gently. I hope it works for you as it did for me. Miraculous, for me, a real life saver in so many aspects.
Joined: May 2009 Gender: Female Posts: 99 Location: California Karma: 7
Re: Treatment for PN finger tips, legs & feet LAC « Reply #13 on Nov 27, 2009, 10:07pm »
Thank you for letting me know . I tried some today and felt like I usually do, I know that it's too soon to see results but at least I'm not sick from it...yet. I will keep you posted!
I believe some of us developed metabolic/mito/syndromes, which can be acquired through medications. It is relatively new field of medicine, and some papers do write about this and the connections with meds.
YEsssss, I took/taking 6000 mg to 8000 mg daily. It stopped lethal paroxysmal arrythmia, (i could feel heart going into spasms, 200 times or more a day, but I still have others types of arrythnia), stopped hunger as Eric described, stopped the PN (within three days), stopped the confusion, weakness (still have, but different trigger), associated breathlessness, (have other types of breathlessness)
This is an acquired mitochondrial/metabolic syndrome, following medication. It can happen years later. Common triggers are PHYSIOlogical stressors such as cold weather, long period without eating, etc...\
I also noticed I have problems with taking EPA/DHA, GLA, and other other fatty acids. There seem to be a problem with metabolizing fatty acids, and protein. It increases seizres, causes some of type of breathing depression/distress and other symptoms.
For a diagnosis of one of those metabolic/mito syndromes is very difficult. Tests are not accurate. Having GA will kill you, if you don't request special types of anesthetics. I will write longer about this in the next post. Tests are very comprehensive, includes, pyruvate, lactic acid, muscle biospsy, etc...
I can't emphasize this enough, those of you, who are always hungry no matter how much you eat, hypo/pyperglycemic, lethary, confusion, arrythmia, etc... please, up your intake of red meats, take L-carnitine, and see if it makes a difference. If it does, it is likely you are suffering from one of those metabolic syndromes.
Avoid contrast dye, this will exacerbate your symptoms!! Avoid all meds, and vaccines.
The protocol for these syndromes are mainly amino acids, Q10 or analog Ubiquinone and other vits and supps, avoidance of oils, and whatever else, your neurologist can think of which may help.
Beebs,
"having GA will kill you if you don't request certain types of anesthetics" What's GA? Where did you read this?
Also, other questions about comments in bold above - avoiding oils? What can taking too much do? I also have a problem with DHA/EPA but am fine with and seem to need flax oil.
Contrast dye is particularly harmful? Why? I have been reading about FOD's and mito disorders but haven't seen this information.
As you mentioned, our mito's can fail in many ways and individuals might need different aspects supported. I'm also wondering if there is any evidence that the chemically induced disorders ever heal/revert? Possibly if cumulative damage to the mito's is avoided, if all missing/needed things are added and the mito are supported they will heal over time and be able to perform more normally? Any thoughts from any of your reading?
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Beebs! 
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and never even heard of them. I gave him all the info, and he said to continue with L-Carnitine.
to see some of my close friends hooked on them, worsening and developing more symptoms.