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Old 05-26-2005, 02:45 PM   #31
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Quote:
Originally Posted by glasskat
I am taking CoQ-10 (200 mg) a day. It can be very expensive. The last batch I got was a buy one get one free at Rite Aid. (BTW, anyone who is on a statin drug should be taking CoQ-10!).

I also take Acetyl L-Carnitine and L-Carnitine (because the second is less expensive).

Adding these two supplements to my morning and mid-day routine has really improved my energy and appetite suppression!

Thanks for the information, Glasskat. Do you remember how long you'd been taking these supps before you felt your energy increase?

Also, I'm just learning about these ... I don't know what Acetyl L-Carnitine is; how come you take both the Acetyl and the plain L-Carnitine?

Thanks!


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Old 05-26-2005, 05:44 PM   #32
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Originally Posted by Cats82
Thanks for the information, Glasskat. Do you remember how long you'd been taking these supps before you felt your energy increase?
I noticed a difference from the Acetyl L-Carnitine and L-Carnitine immediately!

Quote:
Originally Posted by Cats82
Also, I'm just learning about these ... I don't know what Acetyl L-Carnitine is; how come you take both the Acetyl and the plain L-Carnitine??
The short answer is...cost.

Here's the long answer...

A couple of months ago I got an email offering a chance to use a "computerized assessment" of my symptoms and blood results to help give me and my doctor a "plan" for treatment of chronic fatigue. (vitality101 dot com)

Since October 2003, I have been dealing with some pretty serious health issues. A year ago, I finally found a doctor to help me and working with him has improved my quality of life ten-fold. However, I have still struggled with ongoing issues related to fatigue. So, I went through this computer program (which normally costs somewhere around $150 or so), putting in my symptoms, labs, etc. as they were before I started working with my doctor to compare and contrast treatment protocols. Most of the things that he had me do (in terms of medical RX and supplements) were reflected in this report. To me, this confirmed that I may be able to benefit from those items related to energy - the one area I was still struggling with.

I will go ahead and cut-and-paste here some of the relevant portions of my report as they relate to CoQ10, Acetyl L-Carnitine and L-Carnitine. Keep in mind that this report is over 30 pages long when printed out so I can't include the whole thing here. However, I'd be happy to send you additional information via email in a Word document (I'll just cut-and-paste bigger sections) if anyone is interested.

The Theory Simplified

The mitochondria are the energy furnaces in your cells that burn food for energy. Many studies and findings suggest that these furnaces are functioning inefficiently in CFIDS/FMS. A number of substances (available in supplements) appear to be low, and, especially when used together for 8-12 weeks, may get one's energy furnaces up and running.

These include:

1. TPP (thiamine pyrophosphate).

This is needed:
to get carbohydrates into the efficient fuel-burning (TCA-Krebs) cycle,
for this Krebs-TCA cycle to work without backing up, and
to clear out the excess lactic acid that makes muscles ache. When ATP energy is low, the body makes less TPP, and one needs TPP to make ATP energy. Though available for I.M. injection in France and Italy, TPP is not available in the U.S.

2. Aspartates and malates. These are needed to rescue part of the TCA-Krebs cycle when TPP is low. Studies and experience show these to be very helpful.

3. Acetyl-L-carnitine. This is needed to burn fat and keep a substance called Acetyl CoA from building up and shutting down the effective energy burning systems (the TCA and electron transport system). The need to clear out excess Acetyl CoA depletes Carnitine.

4. NADH. This carries most of the potential energy of one's foods to the ETS, where it is burned as fuel.

5. Sulfur, coenzyme Q10, iron and copper. These are needed for the ETS to harvest over 75% of the energy in food (otherwise it is lost).

6. ATP. The main usable energy form (ATP = "energy dollars").

7. B-complex vitamins (includes B12) and magnesium. These are critical to many parts of the system

So What Can Happen In CFIDS/FMS If These Substances Are Low Enough?

One loses over 75% of the energy in carbohydrates because they shunt into the inefficient burning system. One can't burn fat and one makes more fat. The furnace is turned down and the body can't make the "tools" the furnace needs to work well ("it takes money [energy] to make money [energy]"). Because this occurs throughout the body, the brain (fatigue, brain fog, etc.), liver (chemical and other sensitivities), bowel (malabsorption of nutrients) and muscles (pain and post-exertion fatigue) feel rotten.

So How Do I Treat This?

Here's my recipe:
(In order of priority, if cost is an issue)

1. Take a good multivitamin (See the "Let's Start With The Basics" article)

2. Magnesium/malic acid 2 tablets 3 x a day (less if it causes diarrhea) for 8 months, then 2 tablets a day

3. Coenzyme Q10 100-200 mg a day (70¢-$1.60 a day).
COENZYME Q10, IRON, SULFUR & COPPER are critical for the Electron Transport System to do its job of harvesting over 75% of the ATP energy from food. Since most cellular functions are dependent on an adequate supply of ATP, the health of the entire body is dependent on adequate amounts of coenzyme Q10 (CoQ10), iron, sulfur and copper.

4. Magnesium-potassium aspartate (needs to be a brand that is "fully reacted"). It is not clear what brand is best yet. Take 2000mg a day for 3 months (i.e., take 2 tablets twice a day) and then stop.

5. B12 shots (300 to 5000mcg IM 1-3 x a week for 10-20 shots), especially if your B12 level is under 540 pg/ml. (If not available, use 1000-5000mcg B12 sublingual tablets).

6. CoCarboxylase (thiamine pyrophosphate) 100 mg IM 3 x a week for 4-6 weeks (approximately $2.00 a dose wholesale). This is not yet available in the U.S. Individuals (perhaps with their doctors help) can import it for personal use from Lab ISI-Napoli, Italy (fax: 39-583-799-878 / phone: 39-583-719-935). The shots are uncomfortable, but can help FMS pain.

7. Acetyl-L-Carnitine 500-1000 mg 3 x a day (I use 2000 mg a day) for 3 months (.75 cents to $1.00 per 500mg). Then, take 500-1000 mg a day as needed (or one can likely stop it). Add lysine for three months 1000 mg 3 x a day (40¢ to 60¢ a day) to help the body make its own carnitine. Then, one can often drop the lysine to 1000 mg a day. Any brand of both is fine. **

8. NADH 5 mg 2 to 4 tablets each morning ($2.00 a day) for 3 to 8 months. It must be The Enada brand made by the Menuco Company. It also must be taken first thing in the morning on an empty stomach-at least 1/2 hour before any food, medications or supplements. This is what was used in the Georgetown study.

9. Creatine monohydrate (powder) 5 gms (5000 mg) 4 x a day for 5 days, then 2 gm a day. Mix with water, and, if tolerated, add 1 teaspoon of honey or sugar to the glass (helps absorption). Get one that is assayed as 99+% pure (I rarely use Creatine).

10. MSM (Sulfur = Methyl Sulfonyl Methane) 500 mg 4-6 tablets 2 x a day for 6-8 weeks, then as needed (e.g., 1-3 tablets 2 x a day). Take vitamin C 500mg twice a day (with each dose). Helps allergies and wound healing as well (a lot).

11. Iron-I prefer the prescription Chromagen-FA, although there are many other good forms. Take the iron on an empty stomach. Do not take it within 6 hours of taking thyroid hormones (and probably estrogen as well) or you won't absorb the hormone.

Although the treatments listed above work best if used together, one can likely get a good effect even if #6, #8, #10 and #11 are left out. Except for #1, #2 and maybe #3 (take these forever), one can try to lower the dose after 8-12 weeks. They can also be used safely, though, for long-term if needed (though one probably will not need the full dose).

**further into the report, he expands the Acetyl L-Carnitine discussion with a full page. Here is the "summary" of the points made:

1. Carnitine levels are very low in CFS and taking Acetyl-L-carnitine (or L-carnitine if the cost is prohibitive) can be helpful.

2. Low carnitine may cause part of the weight gain seen in CFS/FMS/ME. Taking it can help you to lose weight.

3. It is even more critical to take if you have elevated triglycerides or Mitral Valve Prolapse.

4. This is an important supplement. Optimal dose is 2000 to 3000mg a day for 3 months, then lower the dose as tolerated (e.g., to 500mg a day). It costs approximately .75 cents to $1.00 a day for 500mg of Acetyl-L-carnitine. If it is too expensive, take 500mg a day (or even every other day) or use L-carnitine.

In my (and other clinicians') experience, L-carnitine is not as helpful as acetyl-L-Carnitine 500-1000 mg 3 x a day. Neither has any side effects except for their cost. Adding L-Lysine (cheaper) 500-1000 mg 3 x a day can decrease the amount of Acetyl-L-carnitine one needs by helping the body to make its own carnitine. This requires vitamin C (200 mg a day) and B-complex vitamins (Davies). I suspect that most people can lower their Acetyl-L-carnitine dose after 8-12 weeks (e.g., to 500 mg a day) or even stop it. Acetyl-L-carnitine 500mg tablets are available from many sources - any brand is fine as long as it is pure Acetyl-L-Carnitine. If you can't afford it, L-carnitine, though still expensive, costs less.



My Comments:
I never had an "official" chronic fatigue diagnosis. However, the problems I've had and the solutions that have worked for me fit within the category. Besides, this isn't something that is harmful and it isn't a "stimulant" energy, it is a good, energy like you feel well-rested and my brain feels much less foggy.
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Old 05-27-2005, 11:42 AM   #33
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Glasskat, many thanks for your lengthy reply, and all the good info. It gives me a good jumping-off place to go find out more. I bought some L-carnatine today, $15 for 60 tabs (250 mg). The ole' budget won't stretch for the rest right now.

Thank you again.


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Old 05-27-2005, 12:46 PM   #34
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The other benefit (from what I've read) about supplementing with A-L-Carnitine or L-Carnitine is that the supplement helps with acetylcholine. Some of the Alzheimer theories center around deficient acetylcholine. Since my paternal grandmother has Alzheimers, I am hoping that some of my efforts will pay off later as well.

Good Luck!
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Old 05-27-2005, 04:14 PM   #35
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Quote:
Originally Posted by glasskat
The other benefit (from what I've read) about supplementing with A-L-Carnitine or L-Carnitine is that the supplement helps with acetylcholine. Some of the Alzheimer theories center around deficient acetylcholine.
I read at one website that a way to look at it is that Acetyl L-Carnitine addresses more the mind and L-carnitine the body.


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Old 05-31-2005, 06:47 AM   #36
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Multi-vitamin

Deb,

Yes, I take a vitamin supplement. I take Vita-13 for Women. It has all of the things I want in a supplement AND it took away my hot flashes! No kidding. I no longer need to take Premarin or extra calcium. Vita-13 is a one formula supplement with herbs, b-complex, calcium and digestive enzymes, so I get everything I need in one dose a day and then I take my flax oil.....and I am good to go!

Hope this helps and thanks for asking.

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Old 06-03-2005, 06:52 AM   #37
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I take GNC's Ultra Mega liquid form that I got on clearance there. Love the fact that it is liquid since I hate taking pills.....Checked the label and it has almost a little bit of everything and then some...
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Old 06-04-2005, 02:22 PM   #38
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[COLOR=Blue]Any opinions on whether taking a multi that is taken once a day, or taking a multi that is taken up to 3x per day is better? I was taking one that you take 3x per day, but I ran out. Now, I'm taking a one a day type. [/COLOR]
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Old 06-04-2005, 10:03 PM   #39
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Read the bottle and see what DV% are in the vitamins.. most only require you to take one pill for 100%
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Old 06-09-2005, 03:24 AM   #40
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Deb
I take the Twin Labs Daily one without Iron, though with my low ferritin ,I could take the iron one. Pam recommended this one, because it has a lot of good ratios for us thyroid folks including 200mg of selinium which helps the thyroid convert T4 to T3. It is powdered so it will also dissolve.

I will warn you, I can not take it on an empty stomach, it makes me In addition I also take Vit C, DRY vit e (the reg one contains soy) and Total EFA's

My trainer also has me taking BCCA's (branch chain amino acids ) and recently we added Elasti Joint. Since i tested low for ferritin, i also take an iron supplement. I tried taking cal/mag at night, it for some reason doesnt sit well with me.. dont know why

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Old 06-14-2005, 04:16 PM   #41
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wicked, you mentioned Calcium helped your leg pains? My legs have been pretty achy for the last week or so,,,??? I'm thinking this might help, I was thinking potassium? Sorry, I'm totally confused on vitamin topics, thanks for your help.
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Old 06-23-2005, 07:29 PM   #42
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Quote:
Originally Posted by deelyteful
wicked, you mentioned Calcium helped your leg pains? My legs have been pretty achy for the last week or so,,,??? I'm thinking this might help, I was thinking potassium? Sorry, I'm totally confused on vitamin topics, thanks for your help.
Calcium helped with leg pains, as well as extra Potassium! If I take a Potassium before bedtime, I don't wake up with leg cramps in the middle of the night.
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