Who here takes only LDN and NO other MS drugs? PLEASE post

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Who here takes only LDN and NO other MS drugs? PLEASE post

Postby LillyMS » Sat Apr 19, 2014 7:27 am

I just stopped taking MS drugs this Monday to give LDN a shot for 6 months. I am really concerned I might have made the wrong decision and being foolish? If anyone here takes only LDN for their MS and NO other MS drugs, PLEASE post here and let me know and how you are doing on it in regards to progression and MRI scans?

I would be incredibly grateful for feedback on this. Thanks.

I know my neuro would tell me I am CRAZY and give me a huge lecture, but I am not willing to go back onto toxic MS drugs at this time. I have tried avonex (did not work at all), tysabri (did work but I am JC+) and then tecfidera (gave me horrible side effects and leukopenia!!! ... and very concerned about increase of cancer risk).
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby NormB » Mon Apr 28, 2014 6:34 pm

Lilly,
You can't go wrong by trying it for the length of time you suggested. By the medicaments you take you seem to be on relapsing remitting phase. I am secondary progressive since 2005. I started LDN September 2012. I will never quit it. So far beside the benefits like a bit more stamina and energy I seem to have had no disease progression so far. No MRI though to advance my case. Simply not interested and I tend to go by what I feel. I sometime take Bacoflen or smoke a few puffs of maryjane to relax my muscles I start to feel having RLS (restless leg syndrome). There are barely any side effects with LDN. The biggest issue most people tend to have is with dosage. One should work up gradually up to optimum dosage of 4.5mg.

Hope it helps

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby dlynn » Sun May 04, 2014 1:26 pm

LillyMS,
I agree with you that the m.s. drugs are toxic. I was DX 21 yrs. ago as RR and am now SP since 2009.
I took m.s. drugs for 5 years then stopped. They were just too nasty. I'm now taking ldn only. I started approx. 3 months
ago. It was the best decision I ever made re. drugs. The side effects were almost none, only two nights of restless sleep.
But that was when I first started taking it. I started at 1.5 mg., am now at 3 mg. and will talk to my Dr. in two weeks
to see if she wants me to increase the strength (probably).
I wish you all the best.

dlynn
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby Kronk » Fri May 09, 2014 8:34 am

LillyMS wrote:I just stopped taking MS drugs this Monday to give LDN a shot for 6 months. I am really concerned I might have made the wrong decision and being foolish?


You have to weigh the benefits with the side effects of all medications. It sounds like you have done that and determined that the side effects are not worth the benefits. I don't think your decision was foolish at all. I have little to no reaction with Copaxone so I am sticking with it along with LDN at 4.5mg a day. If you are concerned about pinning all your hopes on a single therapy look into other avenues to treat MS like exercise, diet, supplements etc. I think the mental confidence you achieve by selecting a strategy to treat this illness is as important as they physical effects of it.
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby ThisIsMA » Sat May 24, 2014 2:03 pm

Hi Lilly,

I have never taken any MS disease modifying drugs. I do periodically think about trying LDN and I may still do that. I hang my hat on the benefits of high dose vitamin D and a low saturated fat, high veggies diet. So far its working pretty well. Its been a few years since I had an MRI but the last one I had showed no disease progression.

I don't think you're being foolish to stop the DMD's. What I always say is that I've got enough problems just having MS. Why would I want to add the dangerous side affects of the MS drugs to my list of problems! ...I guess implicit in that is that I don't have confidence that the DMD's work, or at least that they improve more problems than they cause.

However, having said that, I totally respect that its an individual choice, and since ultimately there's no way to predict the future, we all (including me) are taking chances when we make these decisions about what meds to take or not take for our MS.

My own philosophy is that I try to give my body the nutrients it needs to heal itself, while at the same time reducing my exposure to toxins.

M.A.

P.S. If you haven't read up about high dose Vitamin D, there's some pretty interesting science that suggests it modulates the immune system in a helpful way and reduces MS relapse rates.
DX 6-09 RRMS
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby NormB » Sun May 25, 2014 10:24 am

It has been not proven but taking Ldn stops the disease progression. I have been taking this drug with no side effects since 2 years and I can say that my Secondary progressive MS has stopped progressing and even have a better quality of life with it. There is a strong possibility as you have RRMS stage you may stay at that stage for much longer before getting to the progressive stage. How I wish I knew about it at my previous stage but I am still grateful I take it now. If you wish to know much more about Ldn you can buy this book from amazon called "The Promise of Low Dose Naltrexone Therapy" ISBN 978-0-7864-3715-3
You won't regret it and I wish you very Good Luck in your endeavour what ever it may be.

Norman
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby KikiT » Wed May 28, 2014 3:51 pm

I have been on LDN since 2003 . I have secondary progressive or primary progressive..drs. are not sure. I was on Rebif and spent almost 2 yrs of
my life in bed with the flu and progressed quickly. I went to see Dr. Bihari and have not looked back since. I only take LDN, follow DR Wahls diet ( with cheating,) and take supplements..
The last MRI's have no new lesions , as were the ones 6 yrs ago. I go by how I feel..MRI does not necessarily show progression , so why torture myself. Not one new lesion since LDN. 11 1/2 yrs. I have progressed , but it has taken 11 yrs and my progression is from cane to walker....scooter for distance still.
Remember to take between 9pm and 2am, eat healthy and exercise. Chair YOGA, pilates stretch, what ever you can do.I am not cured, but wish I had started LDN sooner.
I now need a walker and still scooter for distance.(I am 60)
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby wildguygoche » Sun Jun 08, 2014 12:59 am

YEAH KikiT!!! Wahl's, LDN, and lower body exercise.

I take no other drugs. Some supplements, fish oil, etc but no damned rebif. That stuff made me severely depressed. Seriously, my decision was simple: try LDN or jump off a bridge. Depression is chemical common side effect of rebif according to the paperwork that comes with those devilish needles.

Remember, you are not an experiment. You must choose what is best for you. Some people are so scared of what life will be like without the pharmaceuticals, that they will never try LDN and may likely get worse on the pharmaceuticals.

If you switch to LDN, know it's not a silver bullet. Think of it as one of the bullets in your arsenal (or feathers in your headdress;). I highly recommend buying Dr. Terry Wahl's "The Wahls Protocol" to see what kind of diet has worked for her.

I know exercise is hard. It can feel impossible. But lower body exercise is absolutely critical.

Let us know what happens!
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby altereddestiny » Fri Jul 31, 2015 4:03 pm

I have been taking LDN and ONLY LDN since my diagnosis in 2004.

I'm a 52 year old female. My prognosis was terrible. I had seen as least four different neurologists, including one who was supposed to be a Regional M.S. Specialist. I was told that I would be paralyzed from the neck down with 4-5 more exacerbations because I had lesions in brain & spine. I was prescribed 3 out of 5 of the CRABs and Tysabri. I refused all after reading about the side effects and effectiveness. Furthermore, it simply made no sense to me to suppress an immune system that was already out of whack...well at least that's one of the theories.

My experience with 10+ years on LDN has been great. I am still walking - celebrated 10 years of "still walking" in June 2014. I did have some exacerbations these past 10 years averaging one every 18 months. I've had periods of blindness, considerable pain, which has been a constant since day one, I've used both a scooter and a cane. Last week I walked two miles!

Let me just say that LDN alone has not been the reason for my improvements and success;however, LDN contributed significantly to my reduction in exacerbations and improved energy levels.

The greatest factors attributed to my continued success is a strict healthy diet with supplements, chiropractic & massage therapy.

If I skip LDN for more than a few days, my energy levels decline. If I skip chiropractic & massage my pain & stiffness levels rise. However, the greatest imprpvements were made with chiropractic. After chiropractoc treatments 3x a week for 4 months, I was able to dress myself, put on make up, walk & drive my car again! I always tell people my chiropractor gave me my life back...and no I am NOT a chiro. In fact, I am a returning poster to this site. I just can't remember my former username...maybe "remnants". I met the doctor who prescribes my LDN on this site on the forums. Dr. Bozena Jurek - great lady :)

I have no adverse side effects from years of taking LDN aside from some insomnia after I skip a few days. I attribute my positive attitude, energy & lack of exacerbations to LDN!

Hope my story helps someone out there oh and be sure to look up Dr. Terry Wahls for healthy diet information to coincide with your LDN...and find yourself a good chiropractor! :)

Be Well!
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby altereddestiny » Fri Jul 31, 2015 4:10 pm

I forgot to mention that I make my own LDN from crushed pills rather than a compounding pharmacy. I have tried both and just find making my own more convienent for me.
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Re: Who here takes only LDN and NO other MS drugs? PLEASE po

Postby ElliotB » Fri Jul 31, 2015 4:39 pm

LillyMS, how are you doing so far?

It is likely that not all MS drugs are toxic (I don't think that any are toxic by the true meaning of the word toxic) and most seem to tolerate them well and many do well on them.
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