just got LDN Rx

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

First time poster here. First, a little background:

37 y/o male, SPMS Dx 11/01. Drugs tried: Copaxone, Avonex, Rebif; none of which seem to work, and all of which made me miserable w/ side effects. Not taking any frontline MS drugs @ present. I've had 6 or 7 courses of IV SoluMedrol over the last several years, each one with less desired effect than the one before. I currently take Adderall XR for fatigue (20mg BID) and Baclofen (10mg TID), plus supplements, and herbal & homeopathic remedies.

I was hospitalized w/ pneumonia & septic shock in 1/07, on a ventilator in ICU for 4 days, then a week on a regular hospital floor, then 3 weeks in acute rehab. According to my neuro, there was some new damage as a result of all the fever & infection, but no new lesions. I never went back to work, & am currently on disability. I recovered about 80% of my pre-pneumonia function.

My wife first read about LDN online a month or so ago & got me curious enough to try to get it. Just had a neuro appt today, and he wrote the Rx after a 30 second conversation. No fight involved at all. According to him, he doesn't advocate it, but doesn't stand in patients' way if they ask for it; yet doesn't believe there's any credible evidence to support its effectiveness. Took the script to a local compounding pharmacy & it'll be ready in the morning. $75, asuming insurance won't pay. Looking into lower cost venues for the future.

I'll post here weekly for a while whilst I give it a go.

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

2 weeks, no change either way.

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

Just over 1 month on 3mg LDN nightly. Still no significant change either way, but I'm noticing a slow, gradual trend toward feeling better.

One night, about a week and a half ago, I woke up to go to the bathroom. I use a walker outside the house, but a cane in the house. I walked around the bed & noticed that I was hardly relying on my cane at all, so I carried it & walked without it to the bathroom & back. I woke my wife up to show her, & I walked again, this time the length of the house, twice, with no cane or other walking aid of any kind; no leaning on walls, steady gate at a normal pace. That hasn't happened again, but I've wowed the kids a time or three with the pace I've kept up using "just" a cane.

Bottom line: I'm encouraged enough to continue.

superman · Family Member Joined: Jan 23, 2007 Posts: 40

This night's walk is quite encouraging, i hope for you that this moon walk will go further, and maybe some daily walk.
Wink

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

It happened again last night. Same time as when it happened before(approx. 1AM), got up to go to BR, walked length of house twice w/ no aid.

Very Happy

Loriyas · Posted: Tue Nov 06, 2007 7:04 am Post subject:

That's so great! Congratulations! I have seen some benefit with LDN also. I hope you continue to see improvement in your walking! Isn't it exciting to have something go right?!
Lori

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

2 full months on 3mg LDN.

Still a slow, steady climb toward feeling generally better. I'm sleeping better, bladder control is better (not that it was really an issue before, but I can put off the urge to go for much longer.

I've had some VERY good days. Went out w/o taking my walker a couple of times. Did a flight of steps like I did pre-pneumonia.

Mardie · Getting to Know You... Joined: Nov 30, 2007 Posts: 23

The recommended dosage for low-dose Naltrxone is 4.5mg to treat MS. I would increase the dose.

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

I go back to the neuro in Jnauary. I'll ask for 4.5mg.

Mardie · Getting to Know You... Joined: Nov 30, 2007 Posts: 23

May I ask in what strenght are your LDN pills? If they are 1.5 then three would equal the 4.5 recommended. I started with 1.5 and took 2 for a 3mg dosage to start the first month. Then up it to 3 pills for the dosage of 4.5mg. I responded quickly at this dosage. Not everyone may respond as quickly as I did but I have also noticed continual improvements in the last 6 month. Dr. Bihari who began the treatment of MS about 20 years ago had found that the optimal dosage for MS was 4.,5mg. Not even my Neuro knew this.

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 13

I take 3mg now. I asked for 3mg just based on what I had read online. It seemed to be what most people were doing. The optimal dose seems to vary depending on who you ask.

Mardie · Getting to Know You... Joined: Nov 30, 2007 Posts: 23

3mg is OK if you experience certain reactions and can't tolarate 4.5mg. Look on-line for "LDN treatment" for more info. Good Luck Jake.

pamelatheresa3 · Newbie Joined: Dec 06, 2007 Posts: 3

This is exciting news. I need to find a doctor in central Florida who will prescribe LDN.

Mardie · Getting to Know You... Joined: Nov 30, 2007 Posts: 23

Hello, look at this web site: crystal's MS,TM, & LDN , she keeps a web site with enourmous info on LDN. You can email here and ask for her list of Dr's who prescribe in Florida: crystalangel6771@yahoo.com. There also is far more info on the web, she has pretty much captured most on her site. Good luck Mardie