Yes, Barb.....What Frank said. Don't take no for an answer..

Barb, I had asked my Neuro for it on numerous occasions and he always said "no"...but not really giving me a specific answer as to why.

Well, I finally got tired of someone who saw me for 10 minutes every six months making the decision for me as to what I could do for a condition that I had. He didn't have it....I did. And everything he had suggested and promoted wasn't working. So, I got LDN on my own and never discussed it with him again. And it's working!! I didn't (and don't) expect it to be a cure or a miracle drug but it sure has helped me a lot. Time will tell if it slows or halts the progression of the disease but that's the same as if I were on a DMD. In my opinion LDN should be considered a DMD.

I go back to see the Neuro in December. I will also go for an MRI in December, too. It will be my last one for 2 years. He'll probably have a fit that I'm taking it but I could care less. My health insurance benefits will be terminated as of 12/31 so I don't expect I'll be going back to see him for another two years or at least until Medicare kicks in.

And I am one of the ones who decided to try and limit the additional sx meds I was taking. I was just taking so many pills a day and the side effects from them were making me more miserable than the sx themselves were. I weaned myself off of Zoloft by cutting my dose in half each week until I was no longer on it. I haven't had one negative side effect from that. And the Neurontin I just stopped taking altogether (I was on 900 mg 3Xdaily). I didn't have any negative side effects from stopping that one either. I have since started walking on the treadmill for a few minutes several times a day and taking Aleve when needed (usually once a day around mid-morning). I no longer take Baclofen, either.

Now, I'm not saying this would work for everyone but it did for me. Just like no DMD works for everyone. It's all individual. But I would absolutely give the LDN a try....with or without your Neuro's blessing.

I'm sorry if I come across "anti-doctor" because I'm not. I just got fed up with someone who doesn't even know what my favorite color is calling all the shots as to what I could do to help myself. I tried his way....now I'm going to try my way. I think, too, that over the past 7 years I have developed a thicker skin and a resolve to take care of myself and not depend so much on others to make decisions for me. I am my own best advocate.

Good luck and hopefully you have a Neuro that is open-minded and will agree to give this a try. But you don't need his permission.....his blessing would be nice....but ultimately it's up to you.

Take care!

Hiya, Barb. You are wise to be very cautious when it comes to the drugs you put in your body. I had heard of LDN about a year ago, and I had done quite a bit or research on the net. I, like you, wanted to hear both the good and the bad of it. It is important that you feel at ease with your decision to take, or not to take this (or any) drug. For me what it boiled down to is that there seem to be very few negative points to LDN. I have now been taking it for a few weeks, and I have seen some very encouraging changes in my condition. I wish you the best of luck in your journey. If you do decide to take LDN, stick around and let us know what your experience is like. It will help others to decide weather or not to take LDN.

Kelly, that was a GREAT commentary, and you said several things that I probably said too when I first started on LDN.

In the beginning, I was so excited about how well I did on LDN ... I was all over the internet telling people "you gotta' try this stuff!!". Of course back then there were not very many people desperate enough (i.e. that had accepted defeat on most of the mainstream options) . . . so my excitement (translation: "anecdotal" account of the efficacy of this potentially unsafe "snake oil") had the effect of ruffling a lot of feathers.

What made it worse is that everyone who did well on LDN (which was most that I talked to back then), eventually slid off the forums. They went on with their lives . . .

Now, I think I accept that it probably can't help everyone, but I am relieved there are also many people on the forums that can, and will, attest to it's effectiveness for them.

I still think it's the best option we have, at least until something better comes along . . . but I also know I still have the MonSter.

Cherie

I agree, Cherie. I'll always have MS...but LDN has made alot of the daily "reminders" much less apparent and aggravating.

I try not to be too "pushy" with my opinion of LDN because I know everyone is different and everyone responds to it differently. But, no different than the Interferons which everyone responds to differently. But.....it's hard not to be excited when you find something that makes you feel so good!

I even overdid it the other day and paid for it big time the next.....but it was OK! I knew why I was so tired and it was worth it to be able to have the kind of day I had.....it was like I was back to normal again!!

Thanks everyone for your replies. I know that one of the reasons I am being cautious is because of the reactions I have had to the other ms meds. I am also allergic to amoxicillin (ended up in emergency room two days in a row) and sulfa. Everytime a new med is now suggested to me it scares me. I have a three boxes of provigil samples that I have not even opened because I am worried about reactions. They have been sitting here since May. Of course when the doctor gave them to me she said, "now don't have a reaction to this too." After feeling as if I was having heart attacks several times in a fairly short period of time due to IPIR's (copaxone) and tysabri and having my throat close up while on betaseron, I think my caution is reasonable.

Barb, I really don't blame you one bit.

To be honest, I was very scared to start on LDN, and I purposely avoid most drugs and fillers too. I have allergies to many, many things and sensitivities to even more. I have never gone into full-fledged anaphylactic shock, but I have felt the closing of the throat starting before I escaped the obvious allergen or got treatment. Most of my other allergic reactions I have been able to manage with Benadryl, or I recognized the reaction before I became too sick, i.e. tetracycline, codeine, gravol, generic ibuprofen, etc.

You have been on heavy-duty drugs, some of which most people (even those without known allergies) are treated for a potential reaction before they ATTEMPT to try the med.

I started LDN at a higher dosage then I would recommend someone with a history of allergies try. If you decide to try LDN, my suggestions would be:

- sit in the lobby of the hospital, with a friend, the first few times
- start out at 1.5mg
- get your rx compounded as liquid, made out of the PURE Naltrexone powder

I use the liquid, and all that is in it is Naltrexone, distilled water, and a flavoring that is compatible (and I have used prior). The only thing that could have gotten me was the drug, if I was allergic . . . and I had NO problems what-so-ever.

(NOTE: if you opt to go this route, I would want to give you further tips before you get it rx'd/filled)

You are very unlikely to have a problem, even with the capsule & fillers normally used, Barb . . . but because of your history, of course you should take all necessary precautions.

Cherie

Cherie, Skip makes his capsules with pure naltrexone powder as well.