Hi, Could We All Introduce Ourselves on this thread?

New members should feel free to introduce themselves here

to judie re supps

Postby jimmylegs » Fri Mar 31, 2006 1:42 pm

Hey Judie I'm kind of like you, just turned 35 no hubby (bf tho), no kids. I got dxd Feb 1 06.

I got the blood tests and all (i gather you mean the baseline liver monitoring tests to prep for rebif) but then i decided not to fill the prescription and i'm going to fly drug free for a while and see how it goes.

Your supps sound great - i do the o3, vitamins, and lecithin, and am considering turmeric for the next trip to nutrition house.

I started taking a liver support pill (herbal blend) when I thought I would do the Rebif - haven't stopped yet - which you may want to consider also.

Vitamin D is good, my MS doc even said it would be good to take - your body puts it out when it needs to mediate immune response. I take 4000IU per day in lieu of sunlight, on the advice of my ND (i also have to get my reg doc to test my vit D saturation to make sure i'm not overdoing this fat-soluble vitamin). Will likely have to modify in summer.

B12 is neuroprotective and i take 1000mcg methylcobalamin (not cyanocobalamin) daily. My b12 was super low for years - as in, making me stagger low - out of pure dumb stubborn-ness, and i am now dutifully keeping it above 500 (it's 640 actually) since that's the min of the normal range in japan (where ppl don't get ms). to help w b12 metabolism i take 1 tbsp per day of a calcium liquid.

I was taking B-complex daily but had to cut back to q 3 weekly, coz my folate went through the roof and made me itch like mad around the shoulders - kinda glad i had lost sensory below that lol!

Lots of ppl are iron deficient too so watch out because you need it to get oxygen to your cells so they can do what they're supposed to like make myelin :? and there's enough fatique associated w/ this disease without being anemic too. my hematocrit improved since i started adding iron too, so it's working!

I take ginkgo biloba for the brain and circulation, and my ND said to look into OrthoMind when I run out.

I take acidophilus, digestive enzymes and 2g C daily to help ensure the bod is able to utilize everything.

Vitamin E is in there as part of my A-C-E antioxidant angle (i get A from many foods and the omega/cod liver oil supplements so I don't specifically take A)

Think that's about all. Oh there's a multi-mineral in there since i drink filtered water... I usually have a mega-pill-fest (~16) after lunch every day lol

I have seen big improvement since I started and it's just my C5 thru C8 dermatomes that are really messed up any more. stupid arms. stupid hands. T1 through T12 are WAY better, just a little of that tightness around the rib cage. kinda shaky but that should improve too.

My ND also said run cold water at the end of each shower to get the blood moving suddenly which is supposed to flush toxins. i said sure but in practise it is just not happening. so instead i am considering using niacin to get the body flush and move the blood around that way.

scoobyjude wrote:I am going through blood tests now and plan on starting Rebif soon. This frightens the heck out of me but I'm going to do all I can to help myself. I am currently taking Omega 3, a multivitamin and Lecithin as supplements and I was thinking of tumeric. Can anyone suggest anything else or have a reason why I shouldn't take these? My neuro did not seem to have much faith in supplements but I trust people who are dealing with this condition to have more informed info. I just love the overall positive research vibe of this forum and how helpful the members are and wanted to say so. Thanks
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Introducing Myself

Postby j3jewell » Sun Apr 02, 2006 3:07 pm



Hello Everyone!

I'm very happy that I found this site...I'm going to enjoy "meeting" fellow MSers and exchanging information. A little about me...I'm 38, recently engaged, no kids (yet), diagnosed with R/R MS in October 2003, and currently taking BetaSeron and 3-5 day courses of Solumedrol every 2-3 months. Had several petite mal and then two grand mal (while being examined by a neurologist in the ER) seizures in August of 2004 (no family history of seizures) and am currently taking medication to prevent them. Originally diagnosed with 3 lesions in the brain and one in the C-2/C-3 section of my spinal column (as large as a finger) and was *this* close to being a quadraplegic. Luckily, was given a massive dose of the solumedrol at the ER which was then followed by a 5-day course at home. I've tried to take a very proactive approach since the diagnosis and have tried to educate myself as much as possible about the disease. Have a very strong support system in my fiance, family, friends, doctors, colleagues, etc., and trying my darndest to keep a positive outlook on things even when I'm having a crappy day! After all, each day that I wake up is a good thing, right?

Again, I look forward to getting to know you all and exchanging information and ideas.

Take care,
Jennifer
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Postby Katman » Sun Apr 02, 2006 7:10 pm

..
Last edited by Katman on Mon Apr 03, 2006 6:42 am, edited 1 time in total.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Arron » Sun Apr 02, 2006 9:05 pm

Hello Jennifer,

Welcome to the site. You will find a warm and very knowledgable community here that will welcome your participation with open arms.

Rica, I appreciate your welcome but take exception to you again immediately referring a new member to an alternate site that is *not at all affiliated* with This is MS and focusses on one treatment option-- and an experimental one at that. Worse, you are claiming that patients are "without exception" better-- I cannot allow you to make such dangerous and unsubstantiated claims on this website. As most readers know, antibiotics is one of a bevy of alternative treatments that an MS'er should evaluate if unhappy with the approved therapeutics, with the close involvement of their doctor and with full understanding that there is as yet little clinical data to support efficacy for this application, and what there is certainly does not support a 100% success rate.

This site is about patient empowerment through knowledge of *all* viable treatment options-- if you are interested in evaluating antibiotics with the advice and consent of your doctor, you can find plenty of information in the antibiotic forum.

Now back to the introductions thread,
-arron
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Welcome, Jennifer

Postby lyndacarol » Mon Apr 03, 2006 8:18 am

From your introduction, I think you will be a great asset to this site. You seem to have an inquiring mind and a wonderful attitude (though we are all allowed to have those "moments," you know).

I think you will find like-minded souls at this site; so...welcome!
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Hello one and all!

Postby skyewriter » Thu Oct 05, 2006 11:49 am

Hi there everyone! I found this site through a google search for "negative side effects + low dose naltrexone + ms."

I'm a 49 year old, 6' tall unmarried woman with no kids, just four cats and the horse (see below). I've have been diagnosed since July 1996, on Copaxone since its release, and was doing great up until about two and a half years ago. I'm now having more exacerbations (went seven years withone one) and my neurologist says my disease is progressing. NOT WHAT I WANTED TO HEAR!

Am trying desperately to get a prescription for LDN, and have already given about 15 pages of internet stuff to the Dr., and will be printing up evidence found here too.

I have a 23 year old horse who I've had for just over one year. She's the light of my life! Breezy is a 15 hand bay 3/4 Arabian, 1/4 quarter horse. She's so gentle and rideable. It's always a challenge for me to get on her, however!

I'll post again if/when I get on LDN and let you all know how that goes!
Wherever you go, there you are!
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welcome!

Postby jimmylegs » Sat Oct 07, 2006 4:31 am

hi j and skye welcome to the site, it's a great spot.
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LDN!!!

Postby skyewriter » Sat Oct 07, 2006 8:52 am

I started Low Dose Naltrexone last night. At 11:40 P.M. I got up to use the bathroom and my right hand was no longer numb! Also, my left leg has about 50% more mobility!

It was no problem walking up the hill to feed Breezy this morning!

I'll post again when other things start improving...
Wherever you go, there you are!
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re ur ldn news

Postby jimmylegs » Sun Oct 08, 2006 7:25 am

right on, that's great news!!!
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Hi

Postby mick_b » Sun Oct 08, 2006 4:47 pm

Hi

My name is Mick (yes, like the mouse only shorter).

I’m in one of those statistical minorities; 50ish male dx’d with ppms in 2001 (after limping for a year). I was finally dx’d at the Cleveland Clinic after some frustrating and down right incompetent experiences with neuros. Anyway, gave the director my info and was diagnosed with PPMS in about 30 seconds. Hmm?

I’ve tried Novantrone, stopped it after 3 doses and a 20% decrease in heart function. Now I don’t take anything (except a very careful diet and a slew of vitamins)

I watch the board and contribute when I can.
I introduced myself earlier in the introduction forum.

Mick
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Welcome, Mick

Postby lyndacarol » Sun Oct 08, 2006 6:22 pm

Welcome. You'll find lots of info and support at this site. You could spend DAYS reading everything here, even if you started with just the General Discussion forum!
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Postby outoforder13 » Mon Oct 09, 2006 7:49 am

Hello -
I was diagnosed about 3 years ago - never had a problem before that first BIG ONE. I am about to turn 30 (yikes). I work 50 hours an week and go to school - despite relapses every three months since diagnosis...
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Postby skyewriter » Mon Oct 09, 2006 5:06 pm

Three capsules into LDN and my right thumb is completely NOT NUMB and my left leg can now lift two feet rather than the four inches of last Thursday.

I tell you, this stuff works!

I'm so sorry to hear about your situation, Mick. Hang in there!
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Postby Arron » Tue Oct 10, 2006 12:28 am

hi outoforder13 and skyewriter-- welcome !
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Hi All

Postby Vidalia » Wed Oct 25, 2006 4:25 pm

New to here but reading my way around. 46 F here RRMS. DX'd 2/05 after having numbness and tingling in hands and various other locations. I thought I was having a stress reaction (son in Iraq at the time) boy was I off!!! My symptoms have gotten no better, no worse since onset. Just tired all the time. :(

Taking Avonex. Don't like it. Not to fond of my neuro but here in Cornfield the pickens are slim (actually he's the only one). I'm still in the "closet" about my MS. Work full time, have 4 kids and a grandson. I look forward to reading my way through the message board and getting some new ideas and maybe a little better attude about things. Can't hurt can it?

Peace, Vidalia
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