Questions from a new LDN user

[kiara]

Hi everyone, just looking for a little info. I started taking LDN 3 weeks ago, 3mg. In the first 5 days I noticed numbness in my hands and feet fading. It was great I could actually feel with my left hand. In the last week though I've noticed the numbness creeping back in the hands and feet. Is this normal, will it go away again? I haven't noticed any changes in leg spasticity Should I try 4.5mg or take a few days off? I've read that some people take for 2 weeks and take 2 days off. Any insight would be greatly appreciated.

[Xenova]

That's a difficult question to answer. There are many factors such as your weight, body metabolism, etc that you should consider. I read where a pharmacist states that there really isn't a difference between 3 and 4.5 because of the way our body processes naltrexone. If you are dissatisfied at 3, it might be worth trying 4.5. Remember everybody is different and you won't know how you would react without experimenting and getting your doctor's opinion.

I went from 3 to 4.5 after one month and really didn't notice a big difference. Some people will advocate one of the doses as being the best.

I've also heard both sides about taking time off of LDN. Again, you might have try it yourself.

[stsolakos]

...

[kiara]

Thanks for the help. I've been a bit hesitant about trying 4.5mg as I've heard it can increase spasticity, which is a problem for me. I've never been on interferons as I've never met the critiria for one reason or another. I'm SPMS for about 5 yrs and have been going it alone. My GP has prescribed the LDN at my request, but doesn't have any experience with it.

[Xenova]

I've been on Avonex for 27 months and LDN for 11 months. I still take both despite what others warn. I have not had an excacerbation during these 27 months whereas I was having them once a year before any treatment.

For me, I don't think LDN affected my spasticity and I know it isn't supposed to. I went to 4.5 mg thinking the spasticity got worse at 3. Since being on LDN, I felt my spasticity has waxed and waned. I have had 3 doses of botox and it hasn't helped. I take baclofen and at one point was taking it with Zanaflex. Unfortunately I realized that the spasticity is probably due to permanent damage.

A few months ago, I was off of LDN for 2 weeks and the spasticity was worse and it really hasn't gotten much better. Later this month, I will get another botox injection which will be triple the initial dose.

I guess what I am saying is that spasticity relief from being on LDN isn't guaranteed. Some might argue that the Avonex and LDN combination might be the problem. I measure the effectiveness based on lesions which started at 6 in the brain before any treatment and now is down to 2 inactive lesions from an MRI taken 9 months after starting the combination therapy.

[JoyceF]

Can I ask where you are having the LDN compounded? It's very important to get it from someone that understands that it must be in a fast release filler. Just curious because I went for about 6 months and then went downhill until I switched to a more experienced compounder. Been on it 3 years now and all is well.

[kiara]

Hi JoyceF,

I'm from B.C. Canada and am using a local compounding pharmacy. He says it's fast release and he uses avicil for filler. I don't know, I just feel like I'm getting worse in terms of walking. I don't want to quit so soon, but I'm not feeling as good as the first week.

[JoyceF]

I have heard many say that they have experienced a kind of worse period before it gets better. I'm assuming that you are taking it between 9:00 pm and 3:00 am and are not taking any steroids or anything? Having an infection of some sort, like a UTI could prevent it from working temporarily too. If you don't improve soon, you might pose this question to the LDN yahoo group as there are many there with some really great answers. I sure wish I had all the answers but believe me, there are many there so there are many responses to questions. Are you a member of the yahoo group? I say, don't give up on it too quickly...there is always hope.

[lady_express_44]

HI KIM & JOYCE!!!!

Hi Kiara,

I am from BC as well, and had responded to your previous post about where to get LDN compounded locally.

Are you in the Vancouver area? Did you find a reputable pharmacy, experienced in LDN? If so, I wouldn't mind knowing who it is as I am only aware of one local pharmacy that has experience with LDN capsules (I'm currently on liquid). You can email me if you prefer, at "lady_express_44@yahoo.com".

I felt awesome the first two weeks of LDN. I am still feeling fantastic, but have noticed a bit more fatigue and some numbness sneak back in over the last few days. For me, it may either be a result of using liquid LDN (shelf-life or suspension); additional stress lately; the need to increase to 4.5mg... OR . . . please see the attached comments regarding the changes that may occur in the first 3 month:
__________________________

For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms...

This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.
Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS.

Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively "catch up" that the normal balance is restored and symptoms once again diminish and improve.

In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug.

If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced.

It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified.

Dr. M R Lawrence

[matilda]

Hi there.

I just read your comments about your trouble walking. My husband just started 3 mg LDN with avicil filler as well and his walking is also very stiff.
Has yours improved since you posted this message?

Hi JoyceF,

I'm from B.C. Canada and am using a local compounding pharmacy. He says it's fast release and he uses avicil for filler. I don't know, I just feel like I'm getting worse in terms of walking. I don't want to quit so soon, but I'm not feeling as good as the first week.

[kiara]

Hi Matilda, I haven't had any improvements in walking as of yet. I just increased my dosage to 4.5mg three days ago, so I'll see what happens.
Heather

[robbie]

i have been taking LDN for 6 months now and like alot of the comments my walking is worse also. i have noticed inprovement in other areas. the first week of LDN was the best, it was great, if i stayed like that i would be so happy. i have not posted in 6 months to let the LDN take full affect before i shared my results with others. i just want to thank Joyce for the lead on the doctor to prescribe my LDN. i had a hard time getting it. i will keep taking it if that is any conclusion.

[JoyceF]

So glad to hear that you are doing well on the LDN. I'm a little puzzled by the walking thing. Are you doing anything else differently? Could it be that the LDN is creating a lifestyle that is enabling you to do more, thus causing your legs to be more tired? Wish I had all the answers but I'm afraid that I don't. I've been on the LDN for just over 3 years now and nothing new for me...just having to deal with the same balance issues and not being able to walk long distances without my legs turning to rubber but that will be with me forever, no doubt. Sometimes it's hard to realize that some things will never reverse but hey, if we never get any worse, that's great no?

[kiara]

I have a lot of stiffness in my leg, I think it contributes greatly to my walking problem. I guess its spasticity, I've tried Baclofen and Zanaflex without any luck. Does anyone have any other suggestions? I look forward to any ideas.
Heather

[JoyceF]

I really do wish I knew what causes the stiffness cuz so many people complain of that....#1 issue I think. What dose are you on? Some are not able to tolerate the 4.5mg just because of this so they go down to the 3mg. even if just for a while before they experiment by going back up to the 4.5mg. You might try that to see if it alleviates this for you some. Oh and Robbie, I've heard it said that men seem to do better at the 3mg dose. Not sure why that is but this might be something you can try as well. Depending on where you are getting it compounded, a lot of people ask for their LDN to be compounded in 1.5mg so that they can adjust up or down themselves. Of course, the prescription will have to be written this way in order for the compounder to do this. Good luck and let us know how you make out if you do this ok?