LDN and lack of benefits?
 

I am not sure if I should post this here or in the LDN thread. I also do not have any intention to create controversy. I am seriously considering starting LDN and have heard lots of positive stores here. That is why I am planning on discussing it with my neuro. When I mentioned LDN to him once before, he said he did not consider it an option. This was before I experienced all of the problems I have had with all of the CRAB's and tysabri.

What I am wondering is if anyone has quit using LDN due to problems or due to feeling it has not helped. I am have read some claims that LDN may slow down progression while others suggest it is also lessening their symtoms. I have also read the results of the two preliminary studies. I guess what I am trying to discover is both sides of the story. I know that we are all individuals that may react differently to different treatments.

I am also concerned when I read that others are stopping most of their other meds when starting LDN. As much as I would love to stop using neurontin due to weight gain, it has helped me deal with the burning/tingling pain I experience. I tried to cut down on my dosage the last week and I could not handle the burning in my arm.

I also know that my neuro wants me to start taking imuran if my next MRI shows new lesions. Has anyone taken it with LDN?

Hi Barb,

I have personally talked to at least a few hundred people who have tried LDN, and read many more accounts. I have heard of two people who have had attacks shortly after starting on LDN. On both occasions the attacks started within very few days of starting on LDN, so who knows if the inflammation was well underway before they started on it.

One of those two people was ultimately advised to be checked for Lyme (last I heard, LDN is not recommended for those who have Lyme); she was, and she did have it. I haven't seen her on the MS forums for a few years, so maybe she didn't have MS at all.

I think I've heard of one allergic reaction, which can be caused by the drug itself, or by the fillers (if not compounded into a liquid with the pure powder). I also heard of one guy that freaked out because his symptoms "stirred up" (some people experience this at first), and he went off right away.

Other then that, all I've heard is good stories, or stories where the person didn't get any immediate symptom benefit so they went off just because they didn't think it would help them in the long run.

As far as your concern about people going off other meds, personally I do not recommend this, especially right off the bat. I don't understand how a person could tell what is causing/helping what :confused:, but I have heard of many people doing this anyway. I waited a year before I went off antidepressants, and the withdrawals from that were hard enough for me. Once I was off I was fine though.

Having said that . . . I got considerable symptom improvement from LDN, so drugs that I probably should have been on, could have been dropped once LDN did it's magic (for me). I had really bad spasticity pain, which I had been suffering with for two years, but I wasn't on anything for it. Undoubtedly I could have gone off "whatever", had I been on once I started on LDN . ..

I've heard of people combining it with Tysabri, the CRABs, narcotics . . . all things I've understood to potentially conflict with the efficacy of LDN. As far as Imuran, I think I recall someone saying they continued to use it while on LDN . . . but that question is probably best answered by an LDN experienced pharmacist, like Skip.

Barb, the way I looked at it was I couldn't use the CRABs or steroids, and that was all that was available at the time, so I really had nothing to lose by trying LDN. Luckily, it seems to have worked out well for me.

Cherie

Hi Barb..:) It sounds like you want what we all want, at this point, A sure thing. But, alas, LDN is not that and neither is Imuran or any of the other DMDs.:(

As far as going off all other meds, before you start LDN, I wouldn't recommend it. Like Cherie, the only med I was on was an AD and I am still on one.....Although, I have heard of many LDNers, being able to drop some if not all of their symptom meds, after being on LDN for a time.

We can only give you our experiences with LDN and we have done that, ad nauseum..:rolleyes: It has done much to help many, but not everyone has a great experience with it. I hope you do, but you won't know until you try it.:)

If it were me, I would not take Imuran with LDN, but that's just me.

I wish You All The Best Experience with LDN...:hug::hug:

Barb howdy howdy I think after all you have been through, its worth an attempt and hopefully he will at least listen to your reasons, and hopefully he wont immediately think of naltraxone as in the dosage used for junkies or ex junkies.. which is a high dose, and explain to him, you understand the diff between Naltraxone and low dose naltraxone, I sure hope he doesnt give you the run around especially seeing everything you have tried, you have had reaction to, or made you sick, or didnt work, tell him, hey look I am running out of options here, and I want to try this therapy, I know a few have gotten the script from there GP or what you all call em pcp? Good Luck :hug:

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

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! :hug:

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. :eek:

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! :D

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!! :D

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 :D
- 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. :)

Yeah he does, and that's one of the reasons I recommend people go to him (besides how helpful he is :)).

He uses fillers though WITH the PURE Naltrexone . . . the drug itself is just a few grains, and the rest of the capsule is fillers.

Some pharmacies will actually chop up the 50mg pill (with fillers already in it), then add MORE fillers after they break down the 50mg into 1.5mg dosages.

I use ONLY the straight, pure drug, with no fillers what-so-ever.

Cherie

I think Skip uses a mild filler ( I forget the neme) that noone seems to be allergic to...Yet..:) I know, I didn't like lactose or cornstarch fillers..and since I've been getting them from skips...no problems.

I use Skip's, too, and have had no problem. They're so nice and helpful.....what a concept!! I wish all pharmacies were like that! :)

I'm not sure what Skip uses, but it is mild. Perhaps it is lactose or avicil. :confused:

Lactose and avicil are good for most people I think, but I suppose people can be sensitive them too. They are two of the "fastest release" fillers that I am aware of, and this is an important aspect for LDN.

I've also heard some pharmacies using acidophilis, which seems like it might be another good option for some people.

I think it is Calcium Carbonate that is the BAD filler, cause it is too slow release.

Anyone ordering from Skip's can find out what he is using, and/or what the other options he might have.

Cherie

Skip uses avicel, which is wood cellulose.

One thing about LDN that differentiates it from other drugs is that it is only in your system for a few hours. The low dose, taken at bedtime, stimulates endorphin production. The benefits people experience are from the increase in their own endorphins, not LDN itself.

I've been taking LDN since 2005. I started at 3 mg, increased to 4.5, had some increased spasticity with that and went back to 3 mg.

It isn't the only drug I take for MS. I also take Copaxone, and Estriol. I had some definite progression while on "LDN only". However, I stay on it because it improves my bladder and bowel control/function, my energy levels, my mood and my metabolism. There's also no way to know how much progression I would have had if I weren't on LDN. :Dunno: