My regimen(s)

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

My regimen(s)

Postby CureOrBust » Tue Oct 11, 2005 5:33 am

Hi all,

Realised I havnt had a single place just to let others know what I am taking, and how it is working for (on) me. You would quite literally have to look in a number of the forums to get the complete picture. I am hedging my bets.

First a quick overview of the past (rough dates).
1996 diagnosed with a peripheral neuropathy (autoimmune)
Used short Prednisone pulses of 75mg/day tapering down over a week, to stop a relapse

realised relapses occured after a flu/cold

2005 diagnosed with MS, placed on Rebif
stayed on rebif for about 4.5 months (4 Apr 05 - 29 Jul 05).
I reacted VERY badly to rebif.
after being about 2 months in, I had my worst relapse (avoided the prednisone, as I wasnt sure if it was the rebif or a relapse at the time)

Some time (in the later part, say around June) I started Statins (80mg Simvastatin)

29 Jul 2005 - stopped rebif.
So I was just on statins. The severe tingling in my hands virtually cleared up within 2 weeks. I previously tried 2 months of 75mg/day straight of prednisone, and although it improved, it never went away. I have had this tingling for as long as I can remember.

2 Aug 05 - Tried Aimspro
It had a fairly small affect on me, and I later found out that it is not effective until 1 month after an interferon (it was only a few days after my last rebif injection. DOH!)

13 Aug 05 - Started LDN 4.5mg / night
I experience stiffness as my only noticable side affect. It was pretty bad in the begining but as I have been healing, i think it doesnt affect me as much.

10 Sep 05 - Started antibiotics (Wheldon protocol)
So now I was on Statins, LDN and antibiotics.

1 Oct 05 - Did my first flagyl pulse (antibiotics)
Got to 4 days, and I think I either herxed or had a minor relapse. But it has NEVER came on so quick, or left so fast. So i think it was either a herx or the LDN (or Statin) did their jobs. The next flagyl pulse will tell.

So, currently i am on:
4.5mg/night LDN
80mg Simvastatin
Antibiotics ("Wheldon protocol")

I am improving each day. Currently my symptoms are:
* Tingling in the feet (Slowly fading. was at point of pain at its peak)
* Very Bad Balance and stiffness (Gets worse at night, although in the last week, that seems a little better)
* My leg goes into the shakes if i position it right (seems to be getting less and less) Feel "bouncy" when I wake up.
* A "numb" patch under my left arm which comes and goes
* If I look hard right (left also, but not so bad), my eyesight shakes left and right
* Fatigue. At its worst i could only walk for about 10 minutes and then need to sit down. Now I can walk for 30+ minutes, but i do feel it

well... thats what I can think of now.

Just to let anyone else thinking of multiple regimines, I had a blood test (as the statins and doxy of the abx both hit the liver) every couple of weeks, and it all showed up fine. So it is possible to hedge your bets and get away with it. :twisted: (I always wanted to use that smiley, even if not completely appropriate...)
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Postby LifeontheIce » Tue Oct 11, 2005 6:28 am

Good morning, CureO!

What you are doing is essentially what helped me, except that I stopped statins in February. I am still on LDN, antibiotics and on the Direct_MS diet.

So much improvement in three months. Wish you more restoration soon.
B.
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Postby SarahLonglands » Tue Oct 11, 2005 6:48 am

And good afternoon CureO!

I have always wanted to use that smiley too, so to keep you company, here goes: :twisted:

Although I have only ever done abx, there is no reason at all why you shouldn't hedge your bets. What would I have done if abx were not a possibility? Statins, aimspro, LDN, B's diet, stem cell therapy maybe, the lot. One thing is for sure, I wouldn't just sit back and accept the disease.

Since I am only taking one treatment, I have never had my blood tested. What would I do if I found my blood count was slightly raised? Not stop the abx, that's for certain. So I will just think about if I turn yellow, otherwise not think about it.

You are doing very well!

Sarah
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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Postby CureOrBust » Wed Oct 12, 2005 2:31 am

LifeontheIce wrote:So much improvement in three months


Yeah, when I was writting in all the dates, it put it all in perspective how quickly I was recovering. But the scary thing was how quickly I went down hill, with the relapse that happened while on rebif.
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Postby CureOrBust » Fri Oct 14, 2005 8:09 pm

goodbye numb patch under my left arm. I havnt felt anything "unusual" there for 3+days, so I am ready to say that that has cleared up.

One other thing that I forgot to mention was a twitch in my right eye lid (most in the evening). That was prevalent around the end of july, and the begining of august, but cleared up a few weeks ago.
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Postby kitkat2 » Fri Oct 14, 2005 9:21 pm

Say, Cure...

My symptoms are similar to yours in a few ways:
1) Tingling/numbness both feet Left> Right
2) Numb "patches"
3)Tingly palms(makes it difficult to play piano/type)
4) Eye twitch (left eye)
5) Nystagmus and extreme dizziness in '83
[this occurred after a nasty sore throat that was neg. for strep]

High cholesterol runs in my family. Last check mine was 230. I have yet to get an rx for that. My neuro won't because he says (there's no proof it helps ms" (!?) I have to work on my gp now.

I am happy to hear of your improvements and look forward to starting the Wheldon protocol soon. Still waiting for my doxy, however, the rifampin and flagyl arrived yest.

Kitkat2 :)
Holding out hope for Liberation!
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Postby CureOrBust » Sat Oct 15, 2005 7:00 pm

kitkat2 wrote:My symptoms are similar to yours in a few ways:
1) Tingling/numbness both feet Left> Right

Fading very slowly.

kitkat2 wrote:2) Numb "patches"

Apart from maybe some numbness with the pins and needles, the only plain numbness i felt (past tense) was in that small patch under my left arm.

kitkat2 wrote:3)Tingly palms(makes it difficult to play piano/type)

My hand tingles cleared up in less than two weeks on statins alone (80mg/day). I had just come off of rebif. who knows, maybe it had some effect that lasted beyond its life in my veins. I also noticed that the tingling did not start to improve until i stopped rebif, and was only on the statins.

I also play keyboards, and i do notice that my fingers are not totally sure of themselves, although its more noticable typing on a compuiter keyboard.

kitkat2 wrote:High cholesterol runs in my family. Last check mine was 230. I have yet to get an rx for that. My neuro won't because he says (there's no proof it helps ms" (!?)

My father has high cholesterol, but i have always had low cholesterol. Probably because i have been using fish oil for quite some time, and dont eat deep fried foods etc. Funny thing, after a few months of being on statins, my cholesterol didnt go down much (to my doctors disappointment), but now it is really low.

kitkat2 wrote:I am happy to hear of your improvements and look forward to starting the Wheldon protocol soon. Still waiting for my doxy, however, the rifampin and flagyl arrived yest.

Definitely get started on the abx's but from my personal experience, I wouldnt give up on the statins.

My doctor was VERY easy for the statins, as they didnt do much harm (with monitoring), and he was also comfortable with it as they supplied some cummulative protection for future heart conditions.

good luck.
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Postby Jaded » Sun Oct 16, 2005 12:35 pm

Hi CureO

You have made good progress - so much so that I am now thinking of adding Lipitor to my regime! I would like to get the feeling back in my leg.


You are lucky with your doctor. Mine would not prescribe any of the abx, and I am sure it would be pointless to ask her about anything not intended for MS. In my area they can offer me no drugs, not that I am tooo upset about that. :?


Best wishes, and please keep us updated.

J.
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Postby CureOrBust » Mon Oct 17, 2005 1:19 am

One thing I forgot to add, was my suppliments.

Vit C (slow release), B12 (sublingual), B complex (slow release), multi (slow release), NAC, Omega 3, CoQ10 (important for MS and while taking statins), Calcium (to negate the effects of prednisone i took previously).

The above are part of the regular daily cycle.

I also take inosine to boost my uric acid levels. I had a blood test and they were low, but after taking inosine, it was within normal range. I see the inosine as an important part of my regimen (after reading the low commonality between those with gout and those with ms).
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Postby CureOrBust » Thu Oct 27, 2005 4:26 am

I have just done a 5 day pulse of Flagyl. (started last thrusday 20th Oct 2005)

I had no noticable reaction, and havnt noticed any major improvements (well, no change in the rate I am currently improving at).

I think my next flagyl pulse will be for 7 days or something. I have 3 (or two...) weeks to think about it.
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Postby CureOrBust » Mon Nov 28, 2005 1:14 am

Just finished my 4th flagyl pulse on an antibiotics regimen.

I will be giving the antibiotics a rest, until early next year.

I have continued to improve. Its amazing how many different ways the tingling in my feet can present itself, without going away. But it is definitely feeling better (fading) day to day.

My walking has improved, but less obviously. A few weeks ago I would need to stretch every time i got up after sitting for a while. Now, I can walk sometimes even after forgetting to stretch. My walking/balance is where I REALLY want improvement.
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Postby LifeontheIce » Mon Nov 28, 2005 6:39 am

Cureo, why will you stop the ABX if they are working?
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Postby SarahLonglands » Mon Nov 28, 2005 6:54 am

Yes, why? Give the flagyl a break, but if you stop the others too soon, you might well start deteriorating. People do. Write to David asking about this, please.

Sarah :(
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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Postby CureOrBust » Wed Nov 30, 2005 12:23 am

LifeontheIce wrote:Cureo, why will you stop the ABX if they are working?

On my way out, just a quick note. more later if i dont get home too late.
I cant really say the ABX's are working. I was improving on Statins alone. The tingling in my hands disappeared altogether on statins. So, being the pessimist, I will assume (for now) that the ABX's arent doing it for me.
Do NOT take this as me giving up on the ABX protocol! I want to just give my body a chance on the statins (which were working), and then come back to the ABX's (probably in early jan)
On my last roxi script fill, the pharmasist warned me about mixing the roxi and statins. Anyway, I'll try to explain more later.
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Postby CureOrBust » Thu Dec 01, 2005 4:48 am

updated my thread under the antibiotics ("my lazy update...")

basically, sticking with the antibiotics (doxi and roxi) with a rest from the flagyl.

As a side, I take a days break a week from the LDN just to check to see if my stiffness and spasm are being amplified by it.
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