Sima AA, Calvani M, Mehra M, Amato A; Acetyl-L-Carnitine Study Group. Department of Pathology, Wayne State University School of Medicine, Detroit, Michigan 48201, USA. [email protected]
OBJECTIVE: We evaluated frozen databases from two 52-week randomized placebo-controlled clinical diabetic neuropathy trials testing two doses of acetyl-L-carnitine (ALC): 500 and 1,000 mg/day t.i.d.
RESEARCH DESIGN AND METHODS: Intention-to-treat patients amounted to 1,257 or 93% of enrolled patients.
Efficacy end points were sural nerve morphometry, nerve conduction velocities, vibration perception thresholds, clinical symptom scores, and a visual analogue scale for most bothersome symptom, most notably pain.
The two studies were evaluated separately and combined.
RESULTS: Data showed significant improvements in sural nerve fiber numbers and regenerating nerve fiber clusters.
Nerve conduction velocities and amplitudes did not improve, whereas vibration perception improved in both studies.
Pain as the most bothersome symptom showed significant improvement in one study and in the combined cohort taking 1,000 mg ALC.
CONCLUSIONS: These studies demonstrate that ALC treatment is efficacious in alleviating symptoms, particularly pain, and improves nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy.
PMID: 15616239 [PubMed - indexed for MEDLINE]
[ 19. November 2007, 01:31 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I had some of the "vibration" feelings and various stabbing nerve pains that have greatly improved since I started taking L-Carnitine (amino acid) after I found out on a Spectracell nutrition test that I was deficient in L-Carnitine. I don't know if it's a related substance, but seems to have helped me regardless. The recurring little migratory twitches have been the hardest thing to get rid of in my case, and it's my most persistent symptom. Taking purified fish oil, Magnesium, and B vitamins helps, but possibly I'm still not getting or absorbing enough yet.
Posts: 193 | From Virginia | Registered: Oct 2002
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AliG
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posted
Do you take the B-12 sublingually & with B-complex? I think that optimizes absorption.
I also think I remember somewhere that Calcium compliments the Magnesium.
If you're having diffuculty with absorption, the probiotics are really important and I believe Proteolytic enzymes w/meals/supplements can help with that too.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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caat
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posted
I'm taking it along with dhea and 7 keto dhea for weight loss. I'm having less pain but I think it might be the dhea's. I also think I got rid of the lyme. I think all of those are helping bones and nerves heal.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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AliG
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posted
Wow Caat, that's Great!!!
How much have you been taking? How often?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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caat
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Member # 2321
posted
AliG,
Oh, the carnatine and dhea did NOT cure the lyme, rocephin combined with flagyl did. Then I also got treated for bart.
I'm taking about 1 gram of carnitine, probley not enough but it's expensive. It helps your body burn fat. I think the dhea is doing a better job of that though.
The dhea is basically hormone replacement therapy. I'm 47 and have been perimenopausal since at least age 34. It is a precurser for sex hormones which also supports bone and skin and I think nerve healing. I take 25mg dhea and 25mg 7 keto dhea with a small amount of korean ginseng. The ginseng actually is decreasing testostrone for me I think... which is a good thing. Ginseng is a balancer.
The 7 keto bypasses the sex hormone production and supports weight loss and healing. Both dhea and 7 keto dhea bypass cortisol production. All the above hormones are produced by the adrenal system. I go 3 or 5 weeks then a week off in the hopes it won't stop my body from producing these on it's own.
I'm not sure how it would work with active infections.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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AliG
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posted
The study was done with 500 & 1000 mg. so maybe what your taking is enough.
Thanks for the info on the DHEA & 7-keto DHEA. My health food store Guru had talked me into the DHEA quite some time ago.
I bought it but chickened out because of the posibility of increased testosterone. I thought maybe the 7-keto would have been better, but never thought about taking both.
I wonder if the ginseng would balance out the testosterone that I was fearing. I didn't know it was a balancer. What type of Ginseng are you taking?
Playing with hormones really makes me nervous. I have a tendency to take breaks often when I take things that mess with them because I'm afraid I might end up causing more problems than I fix. I know my hormones are all screwed up right now anyway.
My dad has terrible problems with neuropathy. I think I'm going to talk to his doctors & see if there's any reason he couldn't give the ALC a try.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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daise
Unregistered
posted
Hello, everyone,
As I understand it, acetyl L-carnitine helps nerve pain. L-carnitine helps muscles.
B12 sublingual does not work. It is not absorbed, regardless of B-complex. B12 sublingual is sold and it's a shame. Same with methyl B12 sublingual.
Methyl B12 shots can help heal neurological problems (1cc 7 days a week, if you can.) It's an intramuscular shot.
Call around to pharmacies for disposable 1 inch needles, for the best prices. You'll need alcohol wipes (a box for about $1.19 at Wal-mart, plus their cheap little circle bandaids which can be used as a marker to remember which arm or thigh you last injected into.)
I can testify to methyl B12 helping. It must come from a compounding pharmacy. I was paying about $65.00 a month for a vial sent from College Pharmacy in Colorado Springs, COlorado.
I stretched 2 months worth into 3 months, by not having it injected everyday. In this case, B-complex pills (50 - 100 mg) do help balance out the B12 shots once it's been absorbed by the colon.
I can't afford methyl B12 shots anymore so I get "regular" B12 shots 3 times a week. These are cheap, generally available from any pharmacist, in a vial. They are also intramusclar shots. Again, B-complex pills are needed.
Fish oil and magnesium are a huge help to Lyme patients in many ways.
Calcium and magnesium: Yes, but not together as a "cal/mag" because the magnesium may not be absorbed. I take these at opposite ends of the day.
Dr. Burrascano writes about all of this at www.ILADS.org. ("Treatment Guidelines for 2005.) However, I bought brands locally, except for methyl B12.
None of this will cure Lyme disease. They are supportive.
posted
Daise, my doctor sells me methycobalamin viles for like $20-30. They are 30mL and 10,000mcg/mL. She gets them from here http://www.mcguffpharmacy.com .
Also, you can get bulk L-Carnitine and Acetyl-L-Carnitine powders real cheap on here http://www.easycart.net/BeyondACenturyInc./ .Acetyl L Carnitine Hcl is $8.50 for 100 grams, and L-Carnitine Hcl is 75grams for $6.75. Just get some empty gelcaps for 'em.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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AliG
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Member # 9734
posted
So you can just go to a pharmacy & get syringes & injectable B-12 & start giving yourself injections without a prescription?
I really didn't think you could do that.
There's NO WAY I'd be able to do that!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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daise
Unregistered
posted
AliG,
You need a prescription and most insurance companies don't pay, as I understand it.
However, since you will probably have to pay for it, most doctors should write a prescription that you then take to a pharmacist. (Or get it through a source for a pharmacist.)
I mean--if insurance isn't involved, that takes away their reason not to prescribe it. Still, some docs are sticklers.
Suggestion: Tell the doc what you want the B12 shots for. B12 shots are taken when someone tests low. But also for helping to try to heal anything neurological.
Suggestion: show a doc a list of your neurological issues, in order to get a prescription for B12 shots. It would be reasons for them to prescribe.
Methyl B12 needs to be kept refrigerated. It must be compounded by a compounding pharmacy. Not all compounding pharmacists do methyl B12.
Some are allergic to preservatives in B12 shots. I suggest preservative-free.
Would you believe it: An alternative doc told me that methyl B12 shots had to be ordered through their office and it would costs $3,000 per month--and I'd have to also give myself the shots.
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
thanks for the link AliG
They say not to take ginseng with an active "hot" infection. Not sure what that means, but I stayed off ginseng the whole time I had active infections.
With MOST people ginseng will increase testostrone. I am guessing it decreases mine because I have less, uhmmmm, sensory stuff now. Which for me is a good thing. I think I've had an overload of testostrone. I guess I'll find out when the hormone tests come back. I'm taking Korean ginseng. I tryed American ginseng but it seemed to increase my testostrone.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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daise
Unregistered
posted
caat,
Korean ginseng. I'm taking that. Testosterone? Interesting. Maybe I won't buy another bottle. I only have one left. Low finances.
posted
Daise, when did those b12 shots start helping with nerve pains? After how many shots? Thanks
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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AliG
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posted
Thanks pingpong.
I took a look, but I guess I can't find what you were talking about.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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daise
Unregistered
posted
BartonFink,
You poor thing--no LLMD's in Finlandia.
My great grandparents came from Finland! They lived in the rowdiest town in the West, Rock Springs, in Wyoming. My great grandmother worked in a famous Finnish bakery. My great grandfather worked for the railroad. I worked in a Finnish bakery in high school!
B12 shots: they work progressively, but begin, right away. It has eased some of my nerve pain.
However, I focus on the point of view of trying to heal some of the neurological damage done, with B12 shots and machine-weightlifting and dance-stretching in a warm pool--so my muscles won't tighten.
My idea is to reprogram some of the neuro damage. For example, my right arm didn't swing naturally for over three years, so I'm trying to reprogram it by walking (sort of running in slow motion) across the bottom of the pool. It's helping! It's actually helping!
Also, an arm and leg have been neurologically confused underwater, so I practice turning somersaults underwater and standing on my head underwater and that's actually helping!
Nothing will ease nerve pain for Lyme, like proper antibiotics that are for you and your symptoms.
However, I still have nerve pain: is it babs, babesiosis or both? I tested negative. Will my LLMD clinically diagnose me?
B12 shots need to be taken with B-complex, 50 - 100 mg, and no more than that. B-complex can clear some neurological symptoms as well. Have you learned about fish oil gelcaps and magnesium plus a multiple vitamin? These are real basic, for Lyme.
You need a lot of B12 shots, to be effective.
You give B12 shots to yourself or find someone (a friend, nurse, or doctor) who can give them to you. They are intramuscular shots, which mean they are injected way up high into your outer, upper arms or the upper, almost outer side of your thighs. A nurse or doctor can show you how.
The procedure in the U.S. is to order a monthly vial (a small bottle) by overnight shipment. Methyl B-12 shots are the preferred type, as it doesn't need to be processed from cobalomin, which is what the "regular" B12 shots are.
Methyl B12 shots cost more and need to be shipped with an ice pack and must be kept refrigerated. There must be a source in Finland or somewhere in the EU, not that far away. Methyl B12 shots need to come from certain compounding pharmacies.
You need disposable syringes. We buy these at a pharmacy. You need a one-inch needle, 1cc size. Here, these are cheap. We use alcohol wipes that come in a little package, for each one. They're cheap, by the boxful.
Methyl B12 will turn your pee red. Regular B12 shots turn your pee sort of pink. Choose your color! (I tell you this so you won't freak out!)
Methyl B12 or regular B12 shots mean, generally, about a shot a day for 3 - 6 months, at 1cc dose. Or five days a week, if that is more convenient. Or whatever. I stretched 2 months worth of methyl B12 to three months, due to lack of money.
Now I get regular B12 shots--three times a week. These are cheap. B12 regular shots should not have the preservatives that cause a bad reaction in some people.
I talked by phone with a doctor in Germany who's brother has Lyme--there are no German LLMD's, either. They had to come to the U.S. and pay for all the medication themselves.
For you, I have an idea: Could you consult with an LLMD by phone, with your doctor present? Have you been tested for Lyme and co-infections? You could get a treatment plan, just for you, with recommendations for antibiotics.
Maybe post on a different forum title--the one about people looking for doctors. Scroll to the top of this page and click on "forum home." If you need testing, perhaps address finding an LLMD from that point of view. And one who is willing to do a telephone consultation.
I don't know how your healthcare system works. In the US we have "nurse case managers" (also called "care coordinators") who work for the insurance companies.
When someone has a serious and complicated illness, then they are very helpful. They arrange special blood testing (most of our US doctors wouldn't bother with such things.) They can coordinate home health care for intravenous (IV) Lyme antibiotics (most of our US doctors won't do that, either.)
Most of all, they can coordinate a telephone consultation (or a few) with an LLMD in the US. You could tell them the name of the LLMD that you found (and an LLMD suited to the type of treatment that you want.) Or visits in person. Do you have some person comprable who can do that for you? That could be your answer! Telephone consultations!
Will your healthcare system pay for antibiotics? The price for IV Rocephen here just dropped a lot. It is now a "generic" (not made by the original company that developed it,) that's why. There is a post for Rocephin cheap, near the top of the list, for the medical forum. You might remind your doctor that IV Rocephen costs a lot less, now.
I did phone consultations, though I never talked with the LLMD. Rather, my doctor and insurance company people did. They faxed my list of signs and symptoms ahead of time. It worked out beautifully. There was no reason for me to see an LLMD in person. (There may well be reasons for others.)
I received a typed treatment recommendation. My PCP (main doc, general practitioner, or family doctor) administered treatment, through a home health care agency. What are your procedures in Finland for administering IV?
Have you been to www.ILADS.org? On the far left find "Treatment Guidelines" and then Dr. Burrascano's 33 pages of tips for 2005. This could be a valuable resource for you and your Finnish doctor, to understand a treatment recommendation from an LLMD. Also, there is a signs and symptoms page within these 33 pages. It could be faxed to an LLMD.
To convince your healthcare system that you need this care, you might give the administrator a copy. Also, at the same website, just above Dr. Burrascano's tips, you might copy the ILADS guidelines, for your doctor and healthcare administrator.
Do you have a Lyme support group in Finland? Are people over there aware of Lyme disease?
Please let me know if this telephone consultation idea could work out. Lets stay in contact.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Just curious - anyone else try this?
I'm wondering if it helps in Lyme.
Acetyl-L-carnitine improves pain, nerve regeneration, and vibratory perception in patients with chronic diabetic neuropathy: an analysis of two randomized placebo-controlled trials.
Sima AA, Calvani M, Mehra M, Amato A; Acetyl-L-Carnitine Study Group. Department of Pathology, Wayne State University School of Medicine, Detroit, Michigan 48201, USA. [email protected]
OBJECTIVE: We evaluated frozen databases from two 52-week randomized placebo-controlled clinical diabetic neuropathy trials testing two doses of acetyl-L-carnitine (ALC): 500 and 1,000 mg/day t.i.d.
RESEARCH DESIGN AND METHODS: Intention-to-treat patients amounted to 1,257 or 93% of enrolled patients.
Efficacy end points were sural nerve morphometry, nerve conduction velocities, vibration perception thresholds, clinical symptom scores, and a visual analogue scale for most bothersome symptom, most notably pain.
The two studies were evaluated separately and combined.
RESULTS: Data showed significant improvements in sural nerve fiber numbers and regenerating nerve fiber clusters.
Nerve conduction velocities and amplitudes did not improve, whereas vibration perception improved in both studies.
Pain as the most bothersome symptom showed significant improvement in one study and in the combined cohort taking 1,000 mg ALC.
CONCLUSIONS: These studies demonstrate that ALC treatment is efficacious in alleviating symptoms, particularly pain, and improves nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy.
PMID: 15616239 [PubMed - indexed for MEDLINE]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
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