ldn and crab drugs

[bonitamae]

I must go off tysabri as i carry the virus that predisposes me to pml---I want to go on ldn, but since my ms was rather aggressive, i am contemplating a crab and ldn-------can they co-exist?

[CD]

I must go off tysabri as i carry the virus that predisposes me to pml---I want to go on ldn, but since my ms was rather aggressive, i am contemplating a crab and ldn-------can they co-exist?
I must go off tysabri as i carry the virus that predisposes me to pml---I want to go on ldn, but since my ms was rather aggressive, i am contemplating a crab and ldn-------can they co-exist?

Hi,
I am on LDN three years, since 2008. I was told only Copaxone could be used with LDN. Never an Interferon like Avonex, or Rebif, etc. If you plan to use a DMD, use Copaxone then add the LDN slowly. You want to test which drug is helping you.

Personaly, I got off Avonex, then Copaxone, to go on LDN. I used to think only the DMD's were the answer. I was a LDN naysayer for years. Once I tried LDN and got benefit, I became a believer, my Neuro is too. I had the CCSVI procedure and that helped me too.

There are many tretments out there besides sticking yourself with drugs. JMO. Good luck.
CD

[jgkarob]

Hi,
I'm going to confuse the issue a bit, and for that I'm sorry.
It's fine to take beta-interferon with LDN. The information about the two drugs not being compatible has changed since the conference in 09.
If you go to the LDN Trust message board, there's a great explanation by Dr Gilhooly and Stephen Dickson (the Glasgow pharmacist) about why Rebif and LDN are fine together.
best wishes,
jg
ps I take Rebif and LDN.

[bonitamae]

May I ask--------why are you still on rebif? I am trying to figure out if I need both-----I left my crystal ball in my other purse(excuse attempt at humor). My gut is telling me that I should do the crab as an insurance because my ms had been so aggressive before I went on tysabri-----But I have changed a lot since then---supplements, diet, ccsvi. I know we are not doc's here, I am just trying to reason this thing out in my head. sigh

[jgkarob]

Hi,
I've been on Rebif since 2000.
It's worked well, with no bad side-effects. In 08, I moved countries and assumed that after so long, that I must be SPMS and when the Rebif ran out, started LDN.
A few months later I had a very bad relapse - the first since 05 and so as I am well, with very few ambulatory problems and no real progression (except the damage left by relapses) my neuro asked for funding for me to restart Rebif.
At the same time, I learned that I could carry on taking LDN, so restarted that and the combination has worked well.
I use LDN for symptoms - my bladder works normally with LDN and is horrible without it.
I feel better - it's that endorphin rush, I reckon.

It didn't stop relapses in my case and the relapse in 09 was a bad one, with 2 weeks in hospital, due to paralysis. I'm still coping with the after effects of that one.
My neuro here, reckons that I got lucky as my MS isn't progressive, so he's happy for me to stay on Rebif.

LDN is unknown in Spain. After a lot of searching, I bought Naltrexone capsules from my local farmacia and made my own. I posted about it further down the LDN page.
I'm really sorry you have the JC virus. Here in Spain, they give people with aggressive MS, Tysabri for 2 years and then a CRAB drug.
There is Campath - can you try that? It's been in the trial period for a long time - I applied to go on that trial in 01. It can be amazing and stop MS completely.
very best wishes,
jg

[bonitamae]

Thanks for your story-----I am so torn------I have made significant changes---no dairy/gluten/red meat sugar---ccsvi in march-------now have to switch crab drug after tysabri------i feel so good-----so do i go for it------start the ldn and then start the lesser crab---copaxone to hedge my bets that I am better and copazone will give me protection ----or am i shooting myself in the foot inviting big problems w/o crab protection. Then the neuro who never heard of ldn is pushing gilenya-----because my ms was so severe before the 4 years of stabilization on tysabri. I know it is a calculated guess---and there are no clear answers---but the decision is making me crazy-----and they say keep your stress level under control w/ ms--I have to figure it all out because my next tysabri infusion is due and "they" the tysabri rebound effect can be stifled if you get on another crab right away--whose crystal ball is working today???.................

[jgkarob]

Hi again - it's so difficult at times.
Gilenya looks good, but I'm sorry that I can't help with any advice as most of MS pals are in the UK and NICE have decided that it's not cost-effective (like most of the MS drugs) and so neuros and patients who were hoping for an oral drug, have been very disappointed.

I really wish there was a way to tell if you'll rebound or not. My problem with that theory is, as the MS was very aggressive before Tysabri - when the Tysabri infusions are stopped, then the MS should become aggressive again. Seems logical, but there are so many polemic views from people who don't have MS, that it just makes decisions worse for the poor people with MS.

If I was in your shoes, I'd give Gilenya a try. You only have one life and why lose most of it to MS? I hate my bad days. I'm 50 and have multiple problems caused by MS and yet, I've managed to drag myself back to doing what I love - classical singing. It's taken months of training and conditioning and vocal exercises, but I can do this again and never dreamed that I could.

I was housebound for 6 years, with just memories of having a life. For me, my health improved after a terrible relapse, when I tried a raw food diet for 6 months and then went gluten-free.
I know that if I eat gluten for more than a day, that my nerve pain will be terrible - along with my fatigue.
I don't have problems with meat or dairy, but gluten is a big problem for many people.
Recovery is slow. Very slow, but 5 years on from the lowest point, I have a much better quality of life.
My theory is this - throw everything you can at MS. You are worth it.
best wishes,
jg
xx