Here we go.....

Tell us what you are using to treat your MS-- and how you are doing.

Here we go.....

Postby McBlaue » Wed May 24, 2006 3:28 am

This is to document my MS adventure....I hope someone finds it useful/interesting (apart from me!)

History: I was diagnosed in January 2006, at the time suffering some fairly severe difficulties walking, bladder disfunction and fatigue. I lost sensation on on side of my body and in one arm Looking back my first symptoms were in October 2004 when I had some hearing problems in one ear and difficulty passing water.

Currently: All my symptoms have since improved somewhat, although I still have difficulty walking for any distance and get tired very easily. When I am tired, which is a lot of the time, my thinking is foggy. I can't remember directions easily and have trouble reacting quickly to what is going on around me.

I was prescribed Avonex and have decided not to go ahead with it, due to it's side effects and lack of any decent evidence as to its benefits. I have been following a (reasonably) strict low cholesterol diet. I take Vitamin C, D, E, gingko daily. I see a Chinese medical practitioner regularly who gives me accupuncture with the aim of getting my liver/kidney and hence chi energy working better.

I started taking N-acetyl cysteine two weeks ago (600mg 2x a day) and upped my dosage to 1200mg 2 days ago, with the intention of attempting the Wheldon ABX protocol. So far the only side effect I have experienced is a loss of sensation in one arm (the other one!). I will start with the ABX in a couple of weeks, and am considering LDN also.
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hi there

Postby jimmylegs » Wed May 24, 2006 6:00 am

looks like a good regimen!

you may want to consider b complex with a hefty component of b1, b2, b9, and b12. b12 you may want to take at the same time as the rest of the complex, but a diff pill to get lots at once.

some say statins are of use for ms and as you may know, b3 is a recognized alternative for those.

your body needs calcium for the D to act on, and would need ca to deal with any b12 also.

are you having your serum levels of D monitored? something to consider. b12 too. there is literature out there that can point you to good levels - as opposed to "normal" levels.

i take C E and ginkgo too, but not n-acetyl cysteine. yet! i'm taking so many danged things right now that i'm going to go to a compound pharmacist to have a personalized multi made up.

all the best with the wheldon protocol!
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Postby wiggy » Thu May 25, 2006 10:25 am

Welcome,

I understand you are taking NAC are you taking the other ABX supplements?

I started supplements 1 month prior to adding antibiotics.

I had the NAC flu for at least a month - I had to cut back on my dose and build back up and now I am ok.

I am also on LDN and feel it has really helped.



Gook Luck and let us know how you are doing.
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Postby McBlaue » Sat Jun 17, 2006 4:59 am

Went to get my scripts and my GP is on holiday until the end of the month...typical!

Haven't had any real reaction to the NAC....I hope this doesn't mean anything bad. I guess one of the reasons I've been putting off starting (except my Doc going on holiday) is the fear that nothing will happen and it's an avenue closed.

I went to a MS Society "newly diagnosed" evening the other night and they were pushing the CRAB drugs very strongly. I'll go back and re-research, but they just don't sit well with me. It seems that the evidence for their effectiveness is shaky, there's an awful lot of money involved, and an awful lot of lobbying. The Avonex pamphlet is more of a glossy magazine, which costs a whole lot of money to produce, money they spend for a reason. Having said that, you don't want to damage your future due to a distrust of Big Pharma., no matter how much evidence of their untrustworthiness there is around the world.

Sorry....this post is me thinking aloud!
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Postby Anecdote » Sat Jun 17, 2006 7:18 am

Hello again,

Its summer here, now!

Don't worry about the lack of reaction to NAC, it isn't compulsory! The thing is, if you aren't very badly affected in the first place it could be a long while before you notice if anything is working for you. It might even be several years down the line before you realise that you have had no further relapses.

If the Australian MS Society is anything like the British one, they will push CRABs very strongly to the newly diagnosed. Not with me, though, because I wasn't diagnosed until I had become SPMS, and so beyond help. But carry on thinking out loud: even if you do opt for avonex, you can take antibiotics as well. Quite a few people do, at least to start off with.

Sarah 8)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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p-harm-aceuticals

Postby jimmylegs » Sat Jun 17, 2006 7:36 am

i also responded negatively to the drug push! mine was Rebif. i'm not taking anything and will see how things go.
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