I did! I printed that off and highlighted a few areas. I sat there while he read every word!!! He said he didn't see any reason why not to try this!!!

Doing the happy dance!!!

The prescription is for 3 months. He suggested I come in for a blood test to make sure it wasn't causing any problems with my liver.

Woohoo!!!!

Ummm, is there a secret handshake or anything special I need to know about? I hope there's not any hazing involved to join the LDN club!!!

GOOD JOB, Twinkletoes!!

What dosage did you get to start; 1.5mg, 3.0mg or 4.5mg?

A lot of people start with 1.5 mg, and make their way up in 1.5mg increments. Last I heard, Skip would make them up in 1.5mg pills, and then you can adjust (double, triple) as you see fit. You may get up to 4.5mg very quickly or decide you want to stay at 3.0mg for a long while, depending on what works for you. When you stabilize though, he could make the pill at that dosage for a long while, or forever.

Cherie

What parts did you highlight? I go to my neuro wednesday and am going to attempt to get a Rx for some LDN. I'm afraid that he wont even consider the LDN because it's not been thru as many trials as the CRABs or any of the symptom management meds. I'm not sure he'll want to Rx any to me because it seems like most of what I've found on the internet about it is anecdotal information.

I really really want to try the LDN tho, not because I think it'll stop any progression or anything (I dont think it works that way), I just want to see if it'll work for some of the symptoms like numbness.

I just want to figure out what information would be best to print out to present to him. Last time I tried to ask about the LDN, he thought I was asking about novantrone. He wears hearing aids, and I was dumb and asked him about it when his back was to me. He didnt hear me correctly.

Way to go Twink...woohoo!!! Yes what doseage?

It would be very rare to have any liver problems with such a low doseage...3mg...4.5mg. Some liver damage was reported with doses of 300mg or more.

I hope it works well for you...

Thanks, Sally & Cherie.

I requested the lowest dosage (1.5 mg.) b/c of something I read about LDN + hypothyroidism (which I take Synthroid for). I'm not worried about liver damage either -- and neither was the doc, but he's just being careful, I guess.


Hey, I just got off the phone with Skip of Skip's pharmacy! He was very friendly and we talked about 5 minutes.

I told him I had MS and wondered aloud why the insurance companies wouldn't be more than happy to pay this tiny amount for LDN, rather than the BIG bucks for Tysabri. He responded that its possible the insurance companies have investments with the drug companies, so it's purely a business interest. Not necessarily what's best for the patient.

He said, "That's why we don't do business with the insurance companies."

I've seen him called "Dr. Skip," so asked if he were a medical doctor. He said, "I'm a Pharmacy DPHD -- I actually earned my degree!"

Not exactly sure what he meant by that, but I thanked him and will wait for the pharmacy to call me once they get the prescription from my doc.

I meant to respond to this earlier and forgot.

The "ideal" dosage for LDN is 3.0mg - 4.5 mg. Some (especially men and petite women) can't get higher then 3.0 mg, but ideally everyone else will ultimately aim for a dosage of 4.5 mg.

I think 1.5 mg is a good starting dosage, especially if you have contributing medical concerns which might conflict. 1.5 mg is not likely to get you much symptom improvement (if you get this "bonus"), and according to Dr B, is not going to protect you from having relapses or progression either. The minimum is 3.0mg in order to realize these benefits from LDN.

If it takes 3 or 6 months to get up to 3.0mg, and you need tests to ensure that this isn't affecting your other condition . . . so be it. You will need to move up at some point though.

Cherie

I think it's, actually, a better idea to start at 3mg and go down if necessary. Most people are ok at 3mg to start and many stay there a long while, before going up to 4.5mg....I did!!

My doc approved LDN for me on Monday.

So yesterday I got a message from my PCP's office. The phone number for Skip's Pharmacy didn't work. So I gave it to them again.

I just got home and there was a message from Skip's in Florida telling me to call them b/c they needed my info. And so I did.

Two different ladies were helping me, and neither could find any Rx information. I was on hold for 10 min. and "Roseann" said to ask my Dr. office to call them. I said, "I already did that, and they did."

I suggested SHE call them, but she insisted that I do it again.

So she took my number and will continue to scour the office for the papers.

Losing faith fast.

Thanks for the heads-up. I was wondering about that earlier.

If I end up calling in another prescription, I'll see if I can get that changed. What pharmacy do you use? I think I will find another one if they have lost my info for good.

Someone put a hyphen between my middle and last names, so they couldn't find it on the computer.

Now then, this is what Phil, the pharmacist told me during our little chat.

He said that nearly everyone starts at 1.5 mg. for 1 month, then 3 mg. for the second month, then ramps up to 4.5 the third month. This is to hopefully avoid the possible side-effects of "sleep loss and transient slight leg spasms."


I asked him what he knew about LDN's effectiveness with Crohn's disease. He said there was a Dr. Jill Smith at the Univ. at Penn State who had completed a clinical trial on Crohn's patients. He said they had an 85% success rate, with at least one patient going into full remission after 1 month. I got the idea it wasn't a big trial, but still, those numbers are very encouraging. I will have to share this with my bff who just got dxd and has been so very sick.


BTW, a 1 month prescription is $9.95!!!