im so confused lol

Marion did doc say to start at 1.5 or 3 mg? I went to 3mg a week early, per doc, becuae i had quit the other meds and he wanted to see if the spasms would stop

happy sunday all

I'm confewzed!!!

*closes eyes and turns page*

I think we all need a sleeping pill..

Sorry guys......I was having a

I never have any of those, Kell...HeeHee.

We need that emoticon in the trick bag..

My experiences with specific concerns addressed in this thread (sorry so random and LONG just wrote them down as I read them):

Now I know why I am cutting my hair and nails so often! You learn something new everyday...

I have not had a problem when I have had a drink or a few while on LDN.

My best friend is on a higher dose (25mg) for PTSD and she also takes Ambien without issues. My PTSD flashbacks have improved significantly even on such a low dose.

I have not taken any opiates since being on it, so I can't say what would happen there. However I do have a friend who had surgery on LDN. She stopped 72 hours prior to surgery, but she still required twice the usual dose of one of the opiate based drugs. She also happens to be a nurse so she was very on top of the whole situation. She had no issues with after the surgery pain meds.

LDN can also enhance physical pain, making it stronger than normal. I have absolutely noticed this with my situation. My best friend also has at 25mg.

There is anesthesia that can be used that are not opiate based. It is what they use on me anyway because Versed does not work.

With a surgery the only issue is the pain meds. Trying to find pain meds that are not opiate based after major surgery like a hysterectomy... is not fun. When you tell a doctor you would rather not have pain meds and keep your LDN... they look at you like you need anti psychotics more than anything else.

One idea for finding a doctor who prescribes LDN is to call your pharmacy. Ask them if they have compounded LDN in low doses and if they have, ask them what doctor's those prescriptions came from.

If that doesn't work, there is a doctor who gives prescriptions for it over the phone. He does it for MS, depression, chronic fatigue, etc. He requires documentation of course but will prescribe it and do all dosage adjustments for a year. It costs $200. LDN is generally very cheap to get since it's an older drug, I wouldn't even worry about insurance covering it.

Dr Ayre's website is here is anyone needs it: http://contemporarymedicine.net/ I emailed info@contemporarymedicine.net and got his daughter. She was extremely helpful and kind.


My story:

I was diagnosed in June 2007 after 5 years of symptoms. I later found out I had an MRI with lesions in 2004 that I had been told was normal. So I had MS for at least 3 years before being diagnosed. I had 2 babies in 2003.

When I started LDN (quite reluctantly) I was using a cane most of the time and a wheelchair for outings like the zoo. I was in constant pain. I needed Neurotin as well as a muscle relaxant and was considering other meds (bladder spasms, esophageal spasms, etc.) I wanted an option that I could afford to purchase by myself in case health insurance wasn't available. This is what ultimately convinced me to try LDN, it was cost effective and safe.

I started at 1mg and worked up very quickly to 4mg. (2 weeks at the most, I had no effects from moving up quickly and patience has never been my strong point) I eventually settled on 4.5mg. Any higher than that and I have spasticity. I use liquid LDN (just crush the 50mg pill in 50ml of water) so it was easy for me to move up. I take my LDN around 11pm each night.

I have been on it for almost 9 months now. I haven't even SEEN my cane in 8 months. I take Neurontin very rarely (30 pills in 6 months) when I really need it. The only other med I am on is Wellbutrin.

My spasms, burning pain and numbness have essentially vanished. I have my bad days (like when I have to see the in laws, I'm sure my blood pressure doubles then too) but other than that do very well. I missed one dose of my LDN while my daughter was in the hospital in July and I swore it would NEVER happen again. I was in so much pain it was awful.

I have nightmares and sleep issues, so I wouldn't have noticed those as side effects. I noticed occasionally a headache right after taking it but I think it was coincidence. I also don't drink water, so that could have been it.

The LDN I humored a friend by trying has made my life 100% easier and less painful. The spasticity was a HUGE issue for me and the LDN has all but taken care of it.

My neurologist said if I came in now, he would never guess I had MS from my physical exam. He is very interested to see the results of my MRI on Tuesday. I haven't had one since I was diagnosed. He says he is sure that there is major improvement because of my neurological exam being so much closer to normal. He was amazed that I was the same patient.

I still can't tolerate the heat but I am happy to work around the temperature issues. It also has not helped my cognitive issues. I am exhausted still but that is likely other health issues.

There is no doubt in my mind that I would be in a wheelchair right now without LDN. Instead I have taken my girls to the zoo and the dinosaur park, places I never could have gone last year.

Chelsea!!! Would you believe I was just thinking about you yesterday and wondering how you were doing?? I must have ESP!!!!

I'm so glad you posted - and thanks for the notes on LDN. I'm starting it this week and I'm so excited. I'm glad you're doing so well on it.

How are your girls? Thanks for popping back in - it was good to see you again.

Frank, he started me out on 3mg. I took my first dose on Saturday night. I had a very good day on Sunday, but a good day for me is not unheard of. I am very cautiously optimistic. But, like Scarlet O’Hara once said, “tomorrow is another day.”

Hi SL. Thanks for coming back and telling us how it has been going for you. Cudos to you for apparently reading this entire thread, and then responding with your take on the various comments we’ve made.

I am interested in asking about some points you’ve made, especially those I've never heard firsthand from anyone.

Is this the same friend that is on 25mg? What opiate based drugs are you referring to, that she required twice the dosage ~ do you mean anesthetic? Do you know what pain meds she used after the surgery, and did she stay on LDN while she was on the pain meds?


Here is a list of Opiate based drugs, for those who are interested:

Actiq
Avinza
Buprenex
Buprenorphine
Codeine
Darvocet
Darvon
Demerol
Dilaudid
Duragesic Patch
Fentanyl
Fiorinal
Heroin
Hydrocodone
Hydromorphone
Kadian LAAM
Levorphanol
Lorcet
Lortab
Meperidine
Methadone
Methadose
Morphine
Morphine Sulfate
MS Contin
Norco
Nubain
Numorpitan
Opana
Opium
Oxycontin
Oxycodone
Percodan
Percocet
Propoxyphene
Roxicodone
Roxicent
Suboxone
Subutex
Tramadol
Tylenol 3
Tylenol 4
Tylox
Ultram
Vicodin


Do you mean LDN enhances your “normal” physical pain . . . but helps your MS neurological-type and spasticity pain? Is it possible that you notice the pain more because you don’t have any strong pain relief (opiate based) to rely on while on LDN?

I use Naproxen 1000 mg/day when I have pain, which seems to do the job for me. I haven’t had to have surgery since being on LDN though, and I have always had a high tolerance to “normal” pain anyway. I've never used any meds with codeine (allergic), have always been reliant on NSAIDS or anti-inflammatory-type meds for any type of pain . . . but I haven’t noticed any difference in efficacy since being on LDN.

Does Versed not work for you because of the LDN, or other reasons?

I've been on LDN for 3 ½ yrs now, and this was the first year I had heat issues (symptoms stirring in the heat). I left infection untreated for too long (most of 2007) though, so my spinal lesions became active and caused some damage in the process. If I had treated it in time, I suspect I’d still be ok with heat. NEVER LEAVE INFECTION UNTREATED . . .

Do you have trouble with spasticity and cold? Every October I have to drop down about .75 to 1.0 mg when the cold comes (I am on liquid as well, so that’s no problem to do), then I get back up to 4.5 mg a few weeks later.

My cognitive issues are directly related to fatigue. I can do fairly well when I am rested, but when I get tired, my brain shuts down. I figured out, after I went off Celexa, that that med was causing considerable fatigue for me (even though I was originally rx’d it for the fatigue). I have been off Celexa for about 18 mo now, and have established a great routine for sleeping/napping so that I do much, much better cognitive ability when I am awake.

One thing LDN did do though, was lift the constant “brainfog” I had for two years prior to going on it. I don’t think I've had more then 2 days with that since I started on LDN.

Good luck with your MRI results, and be sure to let us know how things are looking in there.

Cherie

Welcome back, Chelsae! Glad you are doing well on the LDN. I hope you will make an album to post more pictures of your darling girls.

Lady Express, thanks for posting a list of opiates. You said, "I've been on LDN for 3 ½ yrs now, and this was the first year I had heat issues (symptoms stirring in the heat). I left infection untreated for too long (most of 2007) though, so my spinal lesions became active and caused some damage in the process. If I had treated it in time, I suspect I’d still be ok with heat. NEVER LEAVE INFECTION UNTREATED . . ."

Would you mind giving an example of what infection a person might leave untreated? Would it be something they may not be aware of (e.g., urinary tract), or just something they don't want to deal with, like dental.

Interesting to know that you change your dosage during the cold months.