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Posted: Thu Oct 20, 2005 5:07 pm Post subject: 8 months on LDN
Hi
I thought I would give a quick update on my LDN experience. I started it 8 months ago and take 3mg. nightly. I tried 4.5mg for a short while but was having trouble sleeping so I went back to 3mg. I may try 4.5 again...
I really don't have much to say. No relapses, which is definitely good. I've had one episode (last fall) that led to diagnosis, and nothing since. LDN is the only treatment I've ever done. I also take a ridiculous amount of vitamins/supplements. I'm trying to adopt better nutrition and all in all my diet is pretty good. Some days I feel more tired than others and some days my legs are more tired...but of course I also have charcot-marie-tooth, so it's hard to say what affects what. I do get little "blips" sometimes, can happen anywhere on the body, just little jumps, like your vein or nerve is popping...blips on the radar.
I was scheduled to have a MRI at the six month mark (had one just before I started LDN), but switched jobs and provinces and I don't see a neurologist/ms clinic until the end of November so it may be the new year before I get the MRI.
All in all it's good news. There is a lot of stress when switching jobs and moving so far away to a city where you know no one, and I haven't had any problems. No real notable improvements but not worse either. It's enough to not get worse... Of course the real truth will come with the MRI.
I am curious about statins...anyone taking LDN and lipitor/zocor? Does anyone know if you can combine the two?
Joined: Jul 28, 2005 Posts: 1334 Location: Sydney, Australia
Posted: Fri Oct 21, 2005 1:51 am Post subject: Re: 8 months on LDN
aylish wrote:
I am curious about statins...anyone taking LDN and lipitor/zocor? Does anyone know if you can combine the two?
I am on both 4.5mg/night LDN (only suffer from stiffness and a little spasicity) plus 80mg / day of simvastatin (plus I am also on the antibiotics as well).
All the three treatments that I am on, do not contradict each other or cancel each other out. When you start statins, its best to get your liver function tested regularily as some people have problems with statins; your doctor will monitor the results.
Joined: Feb 14, 2006 Posts: 13 Location: California
Posted: Wed Feb 15, 2006 11:21 pm Post subject: Re: 8 months on LDN
CureOrBust wrote:
I am on both 4.5mg/night LDN (only suffer from stiffness and a little spasicity)
Is this stiffness before or after LDN? I'm thinking about starting ldn (if I can get it) but the thought that it will make me more stiff is enough for me to call it off.
Joined: Jul 28, 2005 Posts: 1334 Location: Sydney, Australia
Posted: Sat Feb 18, 2006 5:26 pm Post subject: Re: 8 months on LDN
Slumby wrote:
Is this stiffness before or after LDN?
I think (pretty certain) the stiffness was worse on the days after taking LDN. ie I already had "stiffness" issues.
But, it only made existing stiffness worse. Although, like you, I did not enjoy it. I struggled through it on the thought that by not taking LDN my symptoms may get worse, and therefore the stiffness would be worse in the long run.
I have improved (on LDN, Statins and ABX's) to a stage now where I cant tell the difference between when I do or dont take LDN; i still have some stiffness though. (Every now and then I skip a night, usually because I had a late meal, and therefore the LDN wouldnt be absobed as quickly as required)
Joined: Jul 28, 2005 Posts: 1334 Location: Sydney, Australia
Posted: Mon Feb 20, 2006 4:21 am Post subject:
Slumby wrote:
I will ask for BOTH LDN and statins the next time I see my neuro.
Dont get too hung up on getting treatment from your neuro only. I got a Rebif prescription from my neuro (which I dont take anymore). And from my GP, that I have known for quite some time, ALL the rest (ie LDN, Statins & ABX's). Its a LOT easier for me to see my GP than my neuro who only sees patients 1 day a week, and is very much in demand.
The statins felt like they were the real turning point for me personally, but it could of just been stopping the rebif.
Joined: Feb 14, 2006 Posts: 13 Location: California
Posted: Mon Feb 20, 2006 1:03 pm Post subject:
I had to see an Internal Medicine dr. first, who would refer me to the Neuro (I think there is one Neuro and she is there one day a week also). I asked him for LDN, which he had never heard of. He looked over the literature I brought, but wrote up the Neuro referral along with orders for an MRI and bloodwork. If I see the Neuro who diagnosed me (at this hospital), I doubt she will write up an Rx for anything but the crabs, but she may know something of LDN. I do want a new MRI.
I didn't know about statins at the time or I would have asked for that. I'm thinking of starting physical therapy and that doctor might be able to Rx for me, too I hope.
Joined: Feb 14, 2006 Posts: 13 Location: California
Posted: Fri May 11, 2007 10:45 am Post subject:
Wow! That was over a year ago?!
Still no ldn, shot down a few times and still worried about the side effects.
At this point I think I'll wait and see what the trials find. I don't much faith in drugs helping me. Thanks
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