"Anecdote's Personal treatment Regime" additions

A forum for the discussion of antibiotics as a potential therapy for MS

"Anecdote's Personal treatment Regime" additions

Postby SarahLonglands » Wed Apr 13, 2005 11:22 am

If you look at the first of my postings in "Anecdote's Personal treatment Regime" in the Regimens section, you will see that I have made some additions to the supplements list. These are in no way compulsory, but I have found them very beneficial, especially when you get onto the metronodizole. It means you don't have to take so much of the other supplements as well!

Also, coming soon, new paper from Vanderbilt.

Sarah :wink:
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your supplement recommendations, more detail?

Postby ljm » Fri Apr 15, 2005 10:13 am

Sarah, thank you for this reference to your previous post, it was extremely useful.

Can I ask for just a few more details about your supplements.

You recommended "Co-enzyme Q10 in large dosages". How large exactly? Is there an upper limit for safety?

You also recommended "Vitamins A,B,C,D,E, selenium and magnesium in large dosages". I am taking all of these according to their labels. As above, can you advise how much is considered a large but safe quantity?

Also (okay, I have asked you about a hundred questions to date). The recommendations to start Metronidazole/Flagyl after about a month of the other antibiotics. Is that recommendation solely to avoid discomfort of the regime? If the patient is an anxious sort, can she move this up or will that in fact be a bad idea health wise.

As ever, greatly indebted.
LJM
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Re: your supplement recommendations, more detail?

Postby Daunted » Fri Apr 15, 2005 11:00 am

One tip on CO-Q 10. It MUST be taken with food (or fat, or oil; I occasionally take it with 6 grams of fish oil, which counts as food to me).

And Alpha-Lipoic Acid MUST be taken without food.

Makes for a complicated day, when one also considers taking the antibiotics, charcoal, etc!

As far as when to add the antibiotics: Sarah is far more qualified than I to answer. But I believe at least one reason for not starting them all at the same time, is to be able to identify if one is causing a reaction, negative or otherwise. If you start taking them all at the same time, you'll have no idea what is causing what.
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Postby SarahLonglands » Sat Apr 16, 2005 9:25 am

Vitamin C 1 gm
Vitamin B complex 300mg
Vitamin D 4000iu
Vitamin E 800iu daily
Vitamin B12 5 x 1000 mcg tablets daily
fish oil 4 gm
Selenium 200 mg
Magnesium 300 mg
Calcium 500 mg daily
Regular acidophilus capsules as required
Charcoal 8-12 capsules a day, if I remember!

CO-Q 10 I used to take, 30mg three times a day, but stopped it when I started alpha-lipoic acid, acetyl l-carnitine and chlorella. I also must admit that I rarely take calcium now, but might start again at the menopause. Vitamin D I presumed was strengthening enough for the bones when taken at that level.

Daunted, I thought it was the other way round: alpha-lipoic acid with food and acetyl l-carnitine without food, for reasons, I think, of maximum absorption. However, I am one of those people who, if I am hungry, I have to eat, now, so I often take both at the same time as food and have found no difference, quite honestly. By the way, although I have not really cut down on the amount of food I eat over the last three or four years, to my knowledge, despite being at the moment somewhat less mobile than before, I have not put on any weight, luckily.

As for the flagyl, if you have read through several of the other postings, you will know why david cautions against starting this too soon. It is HORRIBLE. I know that Stratton includes it from the start, and constantly, but at the same time he thinks David's idea of pulsing the dose is a good one. This is maybe the difference between the one person who spends more time in the lab and the other who is in closer contact with the patient. If the patient is of an anxious sort, and who isn't (?) she might be better to wait even longer than a month before starting, honestly!

Sarah
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Postby Daunted » Sat Apr 16, 2005 10:15 am

I would recommend against introducing the Flagyl quickly myself, as well.

Especially if one is in an ambigious situation (no confirmed CPn test, etc) I think it is valuable to do the following: Take your temperature when you take your pills (morning and night), and over a month, you get an idea what your temp looks like. Then take it 3x a day while on the Flagyl. If it shoots up mildly that can be an indication that you're on the right track. Not perfect evidence, but useful; and impossible if you add it all at the same time.

Sarah, I'm pretty confident that Alpha Lipoic Acid is ideally absorbed on an empty stomach. http://www.todaysdietitian.com/archives ... 4p56.shtml ..But this is "ideal" absorption of course. There was one study where they couldn't even find ALA in the blood of MS patients if they took less than 1200mg a day so I wonder about its value, but note that Charles Stratton recommends its use at a lower dosage while on the CPn regimen, so there is conflicting information out there. I was taking 1200mg a day but that's a bit expensive so I stopped.

I also tend towards much higher levels of fish oil and B12, but that's just personal preference. I do fish oil at 6-8 grams. I'm also doing B12 3cc injected Sub-q (at least twice a week) and 20,000mcg orally every day. In addition to being healthy, the b12 induces a a decent buzz and energy burst at that level!

The latest information I got from my doctor regarding endotoxins shows that he's being very cautious about their potential impact. He's suggesting Charcoal caps x20 at 10am, 3pm and 8pm, and Questran at 10am and 3pm. Although this is a lot of pills to take, I've switched to this myself, and am regretting having taken so little previously.

ljm, no matter what you decide to do, will you please keep us posted?
This is all just advice, you have to make these decisions for yourself, but it's quite helpful to others if you let us know what you decide and what results.
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Postby SarahLonglands » Sat Apr 16, 2005 11:23 am

Daunted, yes, I stand corrected: I was going by what it said on the label! In future, and bearing in mind the cost, I will take it between meals.

Sarah :oops:
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Re: your supplement recommendations, more detail?

Postby JFH » Sun Apr 17, 2005 11:32 pm

ljm wrote:Vitamins A,B,C,D,E, selenium and magnesium in large dosages".


Be careful of large doses of Vit A - can be, I believe, quite toxic.

And, as was mentioned elsewhere, fish oil is a processed food, ensure your source is reputable.
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Postby SarahLonglands » Mon Apr 18, 2005 12:16 pm

Well, say 4500 iu of vitamin A as beta carotene.

I expect people using this site would be intelligent enough not to go and buy mega quantities of fish oil of dubious provenance sold for next to nothing, but perhaps I was mistaken. :(

Sarah
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Postby MrT » Tue May 10, 2005 7:47 am

No posts on this thread for a couple weeks. Just a quick question.
If I remember correctly vitamins A, D, E, & K are the fat soluble vitamins which means they would tend to accumulate in the body . Is it safe to take 4000 international units of Vitamin D without following serum levels?
Is there any risk of renal problems at that dose or is that still below the threshold? That is after all 10 times the normal recommended daily amount.
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Postby SarahLonglands » Tue May 10, 2005 8:22 am

It is what is recommended in various sources for people with MS, who tend to have lower levels than other people. If you are out in the sun a lot in the summer in a sunny place you could take less, since most vitamin D is made in your body by exposure to sunlight. Someone living in a tropical African country can make 7000 iu of vitamun D a day just by working outside for a short time. This is why MS is much more common in the temperate latitudes and is almost unknown in certain Arab countries except amongst women who are either indoors or wearing jilbab or a burka. 8)

Sarah
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Postby GPlover » Fri May 13, 2005 1:42 am

Does anyone know if there is any vitamin D in Holland&Barrett's EPA Fish Oil Concentrate? It doesn't say on the label and when I asked the shop assistant she said that if it's not listed on the label then it hasn't got any.
BUT I also know that if it's naturally in the product then they don't need to list it. (Just like they don't put a label on lemons saying "contains vitamin C".) And as far as I know fish contains vitamin D.
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Postby SarahLonglands » Fri May 13, 2005 4:20 am

Very true, I have yet to see a lemon proclaiming how much vitamin C it contains!

Fish oil must contain vit D, but probably not in significantly large doses. You will probably find it hard to get vitamin D in large doses from Holland and Barrett as well. I have taken to buying nearly everything from www.i-herb.com in the US, because the exchange rate makes this a very appealing option. It is also easy to get D in tablets of 1000iu, very small, so you just need to take 4. If you would like, get in touch with me and I can add you to my growing list for buying in bulk: it works out even cheaper then.

Sarah :)
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Postby GPlover » Tue May 24, 2005 1:52 am

Many thanks for your offer Sarah! That would be great! It is quite annoying to take 10 tablets and that's only the vitamin D.
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Postby SarahLonglands » Wed May 25, 2005 9:51 am

Better let me know your address then, since David can be a bit forgetful. You can find my email in my profile. I'll then let you know what I get and the prices.

Sarah :)
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