Search found 106 matches

by jgkarob
Tue Feb 05, 2013 4:41 am
Forum: Introductions
Topic: hi i'm a newbie
Replies: 34
Views: 3005

Re: hi i'm a newbie

Hi Linda, All Rebif is supposed to do is to slow down the relapse rate. It doesn't make the MS better, but stops the lesions from forming -in my case. It doesn't work that way for everyone. I still have MS. I can't work a whole day, due to fatigue. LDN helped with my bladder. I can't bend my knees d...
by jgkarob
Tue Feb 05, 2013 2:00 am
Forum: Introductions
Topic: hi i'm a newbie
Replies: 34
Views: 3005

Re: hi i'm a newbie

Hi Linda, SOS Medika is in South Jakarta- it's quite expensive though, but the GPs are excellent. I lived in Cilandak, which was lovely. I do miss the food - gorengan (bad for MS but yummy and durian!). It's very lonely with MS in SE Asia. I was the only person as far as I could find, with MS and I'...
by jgkarob
Mon Feb 04, 2013 10:22 am
Forum: Introductions
Topic: hi i'm a newbie
Replies: 34
Views: 3005

Re: hi i'm a newbie

Hi Linda, I spent many years in Jakarta. Is Rebif licensed there now? It wasn't licensed when I was there and we had to buy it in Singapore and bring it back with us. There are excellent neurologists in Singapore and world-class hospitals. It's lonely though, as MS is very rare. Rebif was very expen...
by jgkarob
Fri Aug 03, 2012 4:57 am
Forum: Low Dose Naltrexone
Topic: I have definitely progressed while on LDN
Replies: 31
Views: 10558

Re: I have definitely progressed while on LDN

Er, this isn't my opinion. It's the advice from the LDN Trust. I don't know what's right or not, but they counteracted the old advice at the conference in 09 and there's still a lots of arguments about how both drugs work. It seems impossible to know for sure which is correct, except that in the UK,...
by jgkarob
Fri Aug 03, 2012 3:23 am
Forum: Low Dose Naltrexone
Topic: I have definitely progressed while on LDN
Replies: 31
Views: 10558

Re: I have definitely progressed while on LDN

Taking LDN and Rebif is a huge no-no! They contradict each other and youll get no benefits at all from LDN. I was on Rebif for 6 years and wound up having to stop it because I developed NABs (neutralizing antibodies) It bascially poisoned me. I have NOTHING against LDN. I feel wonderful- and truly ...
by jgkarob
Fri Aug 03, 2012 2:39 am
Forum: Low Dose Naltrexone
Topic: I have definitely progressed while on LDN
Replies: 31
Views: 10558

Re: I have definitely progressed while on LDN

Hi, I had a huge relapse whilst on LDN. I was so cross about this that I just kept away from MS forums. I have noticed that other people who haven't had a great result from LDN just post once about it and then don't bother with the LDN forums again. I had been on Rebif for 8 years and it had worked ...
by jgkarob
Sat Sep 24, 2011 7:52 am
Forum: Rebif
Topic: Anyone with GOOD Experiences on Rebif??
Replies: 44
Views: 20175

Re: Anyone with GOOD Experiences on Rebif??

Hi there, here's one experience that may cheer you up even more. I've been on Rebif since October 2000. My neurologist reckons it's kept me in RRMS, but it could just be down to good luck. I was really ill at diagnosis and I've been up and down, physically over the years, but after a few months off ...
by jgkarob
Sat Sep 24, 2011 1:09 am
Forum: Low Dose Naltrexone
Topic: ldn and crab drugs
Replies: 6
Views: 2429

Re: ldn and crab drugs

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 disap...
by jgkarob
Thu Sep 22, 2011 12:17 am
Forum: Low Dose Naltrexone
Topic: ldn and crab drugs
Replies: 6
Views: 2429

Re: ldn and crab drugs

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 amb...
by jgkarob
Wed Sep 21, 2011 4:33 am
Forum: Low Dose Naltrexone
Topic: ldn and crab drugs
Replies: 6
Views: 2429

Re: ldn and crab drugs

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 Step...
by jgkarob
Wed Sep 14, 2011 11:49 pm
Forum: General Discussion
Topic: Getting MS Drugs in Europe
Replies: 2
Views: 1626

Re: Getting MS Drugs in Europe

Hi there, I was diagnosed in Asia and used to come back to the UK every year. I was/am on Rebif and it was paid for (in cash!) by my husband's employers. What I used to do, was buy 3 months supply and put it in my suitcase and hope for the best. It never failed - but Rebif was okay out of the fridge...
by jgkarob
Thu Jul 21, 2011 7:34 am
Forum: Rebif
Topic: Why did you choose Rebif?
Replies: 7
Views: 4971

Why? If it works then why worry about a lawsuit? It's not a class action about a drug that doesnn't work - I live in Europe and I don't understand why the CSVI forum people think this is such a big deal. The reason why I write this, is because after some research, (Wikipedia) I realised that because...
by jgkarob
Sat Jul 16, 2011 12:18 pm
Forum: Low Dose Naltrexone
Topic: Spanish LDN - some info that may help others...
Replies: 3
Views: 5489

Even better news. I spoke to my local farmacia, told them all about LDN and asked if I could buy a packet of Naltrexone and that it would last nearly a year and they were perfectly happy to sell me a packet. I'll pick it up on Monday and it will cost the grand sum of 23 euros. This has to be the che...
by jgkarob
Sat Jul 16, 2011 1:56 am
Forum: Low Dose Naltrexone
Topic: Spanish LDN - some info that may help others...
Replies: 3
Views: 5489

Spanish LDN - some info that may help others...

Hi, Well after the rather useless info here, I managed to read the Spanish foros on how to get LDN. There are NO compounding farmacias in mainland Spain. You have to get your hands on a packet of 50mg Naltrexone and do it at home, but this is what I've been doing for 2 years, so no problem. To obtai...
by jgkarob
Fri Jul 15, 2011 1:10 am
Forum: Low Dose Naltrexone
Topic: I've run out of LDN, can anyone help?
Replies: 2
Views: 1893

I could be wrong, and if I am, apologies. I'm not a troll. I really do want to restart LDN. I've asked at the LDN Trust and no one could help. I'm even personal (as in having met them) friends with one of their mods. I'm on the DVD with my testimony, having done an interview with the admirable Linda...