Lots of questions

lady_express_44 · 10-31-2008, 11:53 AM

The interferons are not currently recommended with LDN (immune modulators that suppress) vs. Copaxone, which is apparently an immune modulator that enhances. They are doing a trial with LDN and the interferons though, so maybe they will change their mind on this.

I don't treat infection naturally, I just do everything I can to avoid it. I ALWAYS treat infection with antibiotics and fever reducers, and NEVER LEAVE INFECTION untreated.

I have not gone the route of enhancing my immune system with vitamins, only because we have heard so many warnings about that. That may prove to be wrong in the longer run . . . but I haven't gone that route.

I don't do many meds, and try to use natural methods when possible. Those natural methods don't include vitamins, but stretching, physiotheraphy, hypnotherapy, yoga, etc.

I agree that taking care of yourself is critical though; don't push too hard, rest when you need to, etc.

Cherie

ewizabeth · 10-31-2008, 11:58 AM

Hi Brenda,

Welcome to NT. You've received some great advice already, and I second what Cherie said below, it makes a lot of sense if you plan to use LDN. I've been on Avonex, then Rebif, then Copaxone and finally, Tysabri. I sometimes think about what I'll do if I need to switch again, and for me it's a toss up between Avonex and Copaxone. I like the once a week shot, except for the fact it's a harpoon type of needle, lol.

I don't like to take a lot of meds, but the disease has made that decision for me.

I try to reduce stress, eat well, exercise and get enough sleep and that helps too. Keep us posted on your decision.

Quote:

Originally Posted by lady_express_44

My recommendation is for people to try Copaxone with LDN ... for double protection. Sometimes people can't handle one or the other, in which case you have no choice . . . but if you have the choice, why not do "everything that you can"? I would suggest you adapt to ONE drug first though (for at least 3 months), and then try to introduce the other.

mom2five · 10-31-2008, 02:46 PM

I appreciate that Wiz. I too use no other medications - just the Avonex and I take two ibuprofen prior to the injection each week.

I am definitely leaning towards Copaxone and LDN...perhaps just LDN. Lot to think about.

weegot5kiz · 11-03-2008, 10:18 PM

Brenda my apologies for typing something wrong b4 the opiates in the pain meds do not mix with ldn not the opiates in LDN my mistake sorry about that, yes I take both LDN and Copaxone, but honestly, I can not say it works, so my opinion on C is biased, so that is why i said naught about it, hope some of your questions are slowly getting answers

mom2five · 11-04-2008, 12:36 PM

Quote:

Originally Posted by weegot5kiz

Brenda my apologies for typing something wrong b4 the opiates in the pain meds do not mix with ldn not the opiates in LDN my mistake sorry about that, yes I take both LDN and Copaxone, but honestly, I can not say it works, so my opinion on C is biased, so that is why i said naught about it, hope some of your questions are slowly getting answers

Actually, with all of my reading...I knew what you meant.

Can you tell me about your feelings regarding the Copaxone? I don't mind the bias. I prefer straight talk, and I understand that everyone has a different opinion and that it's a personal decision...but I still would like to know what YOU think.

SallyC · 11-04-2008, 01:05 PM

Quote:

Originally Posted by mom2five

I am definitely leaning towards Copaxone and LDN...perhaps just LDN. Lot to think about.

My suggestion is to try the LDN for 6mos and see how you do, then, if you feel the need, add copaxone. I know a few on both and wouldn't give up either one, 'cause they dont know which one to give up..

I was on Copaxone for about a year and I still progressed rapidly to SPMS..

I haven't progressed in MS disabilirty since starting LDN 5.5 years ago.

It is great that you have taken charge of your care and I wish you well with whatever your choice of Med..

weegot5kiz · 11-04-2008, 01:08 PM

the only way to find out its not working and or working is to stop taking it, I have been on it for 3 yrs and have had 3 new lesions, even Nero the neuro hemmed and hawwed at me staying on it, he wants to give it some more time with the LDN, so i am a lab rat for ~10 more months, I honestly can not tell you if it is working or not for me, and I dont care for being in suspended animation, its more of a me me me thingy here I dont like it had two bad reactions and one really freaky one, they think I might of hit a nerve injecting, paralyzed myself from hips down for almost 40 minutes, but the other two reactions, were those rarely seen ones where your heart races you feel like your having a major kicker,

mom2five · 11-04-2008, 01:57 PM

Thank you for the suggestions, Sally. After a lot of reading I am now thinking about LDN alone. It's interesting to me that the FDA releases meds after clinical trials on about 100 people...but Dr. Bihari's HUGE list of MS patients on LDN is considered anecdotal because he has not forked out the bucks to do trials with placebos!

I am inclined to subscribe to a theory that says building the immune system is a good thing.

weegot5kiz, thank you for your honest answer. I am assuming that you are talking about side effects from the Copaxone? How long have you been on the LDN? By the way, I am sorry to hear that you are experiencing more lesions.

legzzalot · 11-05-2008, 09:49 PM

I read your reply to the question about LDN and something you said stuck out. I was just diagnosed last Friday and now we are trying to figure out how long I have actually had this. I was also Dx with Graves disease back in 99.

You were talking about lifestyle and dietary changes, and you mentioned something about cutting out dairy. Does this help?
Obviously me being new at this has led to many questions for my next appointment which is on Monday, and one of the biggest questions was what I can do to make it better.

The stress part is never going away it seems between working full time, going to school part time and being a mom. But I have had a really really bad week and I have noticed that I wake up in the morning in so much pain that I am forcing myself to take a day off tomorrow. It is my birthday and I refuse to go to work!

My neuro is a wonderful person who is a little more personally vested as his sister has progressive MS. HE is recommending Rebif, but we have not gone over all of my medical history including the bipolar/anxiety issues I have had on and off for years. He did tell me there is a drug in pill form that is in the final stages of FDA testing and would hopefully be on the market in the next 2 to 3 years that has been shown to reduce relapses by over 60% could this be LDN?

Quote:

Originally Posted by lady_express_44

Hi Brenda, and welcome to NT.

I have had MS for sure since 1991, and probably a lot earlier . . . I liked denial.

There were no meds available when I first found out, so I didn't see the point in dwelling on what "might" be in my future. By the time I was knocked into reality, I had had the disease a long time, and was still doing ok (compared to many who had it for much less time, and/or were on the meds), so I didn't see the point in changing what I was doing in a big way.

I had reduced my stress level (got out of Mgmt), tried to eat better/exercise more, cut out dairy, AVOIDED/treated the first sign of INFECTION (to the best of my ability), etc. That might have helped to keep me relatively stable, and even now my neuro says there is no drug on the market that is proven specifically helpful for spinal lesions (which are my main issue).

I was basically left to my own devices, and found people talking about LDN. My doc was not keen on rxing it, but after a big fight where I threatened to get it off the internet from Mexico, he finally gave in. I've been on LDN (alone) for about 3 1/2 yrs now.

LDN has been a miracle drug for me ... BUT it does not save me from myself. It is still very important to not push ourselves too hard (as tempting as it is at times), and to TREAT infection immediately.

My recommendation is for people to try Copaxone with LDN ... for double protection. Sometimes people can't handle one or the other, in which case you have no choice . . . but if you have the choice, why not do "everything that you can"? I would suggest you adapt to ONE drug first though (for at least 3 months), and then try to introduce the other.

Cherie

mom2five · 11-05-2008, 11:21 PM

Quote:

Originally Posted by legzzalot

He did tell me there is a drug in pill form that is in the final stages of FDA testing and would hopefully be on the market in the next 2 to 3 years that has been shown to reduce relapses by over 60% could this be LDN?

I am curious about this...can you ask when you go and then let all of us know? I actually have mixed feelings about LDN getting FDA approval, because I worry that it will drive the price up. From what I understand, right now it can be obtained for anywhere from $10-$40/month. I don't want to see that change and worry that it might.

Man! Am I suspicious of pharmaceutical companies, or what?!

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