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-   -   LDN and lack of benefits? (https://www.neurotalk.org/multiple-sclerosis/53940-ldn-lack-benefits.html)

lady_express_44 09-10-2008 01:55 PM

Barb, I really don't blame you one bit.

To be honest, I was very scared to start on LDN, and I purposely avoid most drugs and fillers too. I have allergies to many, many things and sensitivities to even more. I have never gone into full-fledged anaphylactic shock, but I have felt the closing of the throat starting before I escaped the obvious allergen or got treatment. Most of my other allergic reactions I have been able to manage with Benadryl, or I recognized the reaction before I became too sick, i.e. tetracycline, codeine, gravol, generic ibuprofen, etc.

You have been on heavy-duty drugs, some of which most people (even those without known allergies) are treated for a potential reaction before they ATTEMPT to try the med.

I started LDN at a higher dosage then I would recommend someone with a history of allergies try. If you decide to try LDN, my suggestions would be:

- sit in the lobby of the hospital, with a friend, the first few times :D
- start out at 1.5mg
- get your rx compounded as liquid, made out of the PURE Naltrexone powder

I use the liquid, and all that is in it is Naltrexone, distilled water, and a flavoring that is compatible (and I have used prior). The only thing that could have gotten me was the drug, if I was allergic . . . and I had NO problems what-so-ever.

(NOTE: if you opt to go this route, I would want to give you further tips before you get it rx'd/filled)

You are very unlikely to have a problem, even with the capsule & fillers normally used, Barb . . . but because of your history, of course you should take all necessary precautions.

Cherie

SallyC 09-10-2008 02:01 PM

Cherie, Skip makes his capsules with pure naltrexone powder as well. :)

lady_express_44 09-10-2008 02:05 PM

Quote:

Originally Posted by SallyC (Post 365643)
Cherie, Skip makes his capsules with pure naltrexone powder as well. :)

Yeah he does, and that's one of the reasons I recommend people go to him (besides how helpful he is :)).

He uses fillers though WITH the PURE Naltrexone . . . the drug itself is just a few grains, and the rest of the capsule is fillers.

Some pharmacies will actually chop up the 50mg pill (with fillers already in it), then add MORE fillers after they break down the 50mg into 1.5mg dosages.

I use ONLY the straight, pure drug, with no fillers what-so-ever.

Cherie

SallyC 09-10-2008 02:12 PM

I think Skip uses a mild filler ( I forget the neme) that noone seems to be allergic to...Yet..:) I know, I didn't like lactose or cornstarch fillers..and since I've been getting them from skips...no problems.

Kitty 09-10-2008 03:41 PM

I use Skip's, too, and have had no problem. They're so nice and helpful.....what a concept!! I wish all pharmacies were like that! :)

lady_express_44 09-10-2008 06:32 PM

Quote:

Originally Posted by SallyC (Post 365652)
I think Skip uses a mild filler ( I forget the neme) that noone seems to be allergic to...Yet..:) I know, I didn't like lactose or cornstarch fillers..and since I've been getting them from skips...no problems.


I'm not sure what Skip uses, but it is mild. Perhaps it is lactose or avicil. :confused:

Lactose and avicil are good for most people I think, but I suppose people can be sensitive them too. They are two of the "fastest release" fillers that I am aware of, and this is an important aspect for LDN.

I've also heard some pharmacies using acidophilis, which seems like it might be another good option for some people.

I think it is Calcium Carbonate that is the BAD filler, cause it is too slow release.

Anyone ordering from Skip's can find out what he is using, and/or what the other options he might have.

Cherie

MizBarbie 09-11-2008 08:51 PM

Skip uses avicel, which is wood cellulose.

One thing about LDN that differentiates it from other drugs is that it is only in your system for a few hours. The low dose, taken at bedtime, stimulates endorphin production. The benefits people experience are from the increase in their own endorphins, not LDN itself.

I've been taking LDN since 2005. I started at 3 mg, increased to 4.5, had some increased spasticity with that and went back to 3 mg.

It isn't the only drug I take for MS. I also take Copaxone, and Estriol. I had some definite progression while on "LDN only". However, I stay on it because it improves my bladder and bowel control/function, my energy levels, my mood and my metabolism. There's also no way to know how much progression I would have had if I weren't on LDN. :Dunno:


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