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04/14/2012 03:40 PM

oligoclonal bands in csf(page 3)

nana68
 
Posts: 29
Member

whats ldn?
Reply

04/14/2012 03:53 PM
harpgirl
harpgirl  
Posts: 552
Member

Low Dose Naltrexone.

04/14/2012 05:00 PM
nana68
 
Posts: 29
Member

ahh I hear this works for fibro too....can you get it over the counter

04/14/2012 08:07 PM
harpgirl
harpgirl  
Posts: 552
Member

No, you do need a script. But if your dr won't prescribe it. I have contacts that have a list of all the drs in each state and even some countries, that will.

Mine runs $44 a month, but think that is a little high. I know others who get it for less, but not anyone around me.

You do need to know how to ask for it though. You have to have sustained relase. It needs to be filled at a compounder. For best results, you start low 1.5 or 2 mgs, then move up from there. I take 3 mgs. 4.5 mgs is the top end (some do 6, but that is rare and not common prescribing protocal.) Everyone is different as to what they find works (milligrams that is.) I have 4.5 mgs prescribed, but only take 3. I get mine in liquid form, so I can adjust accordingly.

Also it won't work if you take narcotics. Nor will it work if you have an infecttion including a yeast over-growth. So it is delicate, but when it works...it really works so very well


04/15/2012 03:40 AM
nana68
 
Posts: 29
Member

thank you cindy...it seems like I have one thing or another all the time but I will ask my doctor about this

04/17/2012 03:13 PM
harpgirl
harpgirl  
Posts: 552
Member

Nana,

I know of a guy that has two MS dx'es but then got dx'ed for Lyme (after much serching and trying to get good testing.) Well I remembered this thread, and went to read up on Lyme. I don't know much about it. Fibro, CFS, Lupus are all so similar to MS. But Lyme is a different thing all together.

But something stuck out to me. Bell's Palsey is part of Lyme. You said you had that. Have you had really good testing done to determine if it is Lyme? Regular testing isn't all that accurate. I do know that.


04/17/2012 03:46 PM
nana68
 
Posts: 29
Member

I don't know what good testing is. All I know is that they took igg blood tests and spinal fluid tests for the lyme bacteria burgeorffi or however its spelt,if you can find out what these specific tests are then let me know so that I can asked for them...thank you. I also have such pain...and I have been researching more on things that can cause small number of o bands porphyria is one of them too but I don't think my doctor wants to do a bunch of test...sigh

04/17/2012 04:13 PM
Crayfish
Crayfish  
Posts: 365
Member

Nana, MDJunction has a Lyme forum. Subscribe to the Lyme forum and the members can give you all the information you need about tests and doctors, etc.

04/17/2012 04:47 PM
harpgirl
harpgirl  
Posts: 552
Member

I don't know much. Just that there is a test that insurance doesn't pay for that can detect Lyme, that others can't.

Crayfish is right, you should sign on to the Lyme group. They could help.


04/17/2012 04:57 PM
nana68
 
Posts: 29
Member

thanks I did
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