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.

I've had to lower/increase the dosage of LDN when the weather changes, every year. The spasticity comes back (for me) in cold weather, but it usually takes me a few weeks (DUH!) every year to figure out what's going on . . . but when I do, I drop down to about 3.5 - 3.75mg, and I am good. I always work my way back up to 4.5mg within a few weeks though.

As far what happened last year with the infection, I had a broken root under a cap in my tooth. It took a while for my dentist to figure out what was causing the pain, but when he did he said that he could just keep putting this numbing med in so I could hold onto the tooth (molar) as long as I wanted.

What didn't occur to me is that every time it got "inflammed", it was actually infected.

Since I had that ongoing infection, my immune system got very weak. I think I got three bacterial infections, bronchitis, a couple of colds/flu's, some UTI's (with no notable symptoms, except MS ones), and I can't remember what else. ANY type of infection can cause us problems though.

My spinal lesions flared up every time I wasn't on antibiotics, and I was on/off them several times. When the lightbulb finally went on (about the tooth being the underlying cause), I had it removed. My spinal lesions quit acting up almost immediately, but by then I was left with some long-term (or permanent) damage, including heat sensitivity and numbness.

I am still at the same EDSS that I dropped to after 9 months of being on LDN, but I have more issues due to the 2007 infection year.

Cherie

Hi Chelsea, thanks so much for your report. So Happy you are doin so well on LDN..

I'm not surprised that your Friend had to dbl her dose of opiad pain med, if she was taking 25mg of LDN. It is, after all an opiad antagonist at that dose, especially.

At that dose, Naltrexone is working in a completely different way than the low dose works for us.. For us the 3 to 4.5mg works to, only block indorphins temporarily and then causes our endorphin level to increase, correcting our immune system so it does not attack our nerve myelin. (The simple explaination.)

At 25mg, endorphins are being blocked for too long of a time to recoup. So, that dose would not work for us at all.

Keep checking in..

Rochelle and Kitty, thanks.

There is no way I'm making another album. lol However there is no shortage of pictures on my blog http://upwithdownsutah.blogspot.com . You may not have seen that before since I was so worried about someone that wasn't supposed to know I have MS finding me. I gave up on that and told my in laws to get over it. I also still have my MS blog and recently started using it again. It may just turn into a "medical blog" and gets lots of attention now.

Funny how I always end up back here with you ladies when something comes up. lol

Not a problem, I didn't feel I could respond without reading the whole thread. I would have ended up responding 15 times.


Nope different person, sorry. This friend is on LDN for MS, she takes 4mg. (My other friend is on 25mg specifically for PTSD.) Fentanyl and Morphine were the two that my friend with MS required twice the dose on. She stopped the LDN 3 days before surgery and did not start it again until she was done with the pain meds.


Yes that is what I mean. For example, my cramps are much more painful. My old shoulder and knee injuries from gymnastics are more painful. But my MS pain is almost non existent. If I get VERY stressed it comes back. I've learned to just take a Neurotin if I have to see my in laws, because I will need it.

My family has a huge history of drug addiction. Even before LDN I refused pain meds whenever possible. I didn't take any after my shoulder surgeries, once I left the hospital. So no, it has nothing to do with not having pain meds since I didn't have them before.


Nobody knows why it didn't work, but it was before LDN. It was during the diagnostic process when they did a Transesophageal echocardiagram to make sure my heart was okay. The Versed didn't work. On top of that the numbing stuff they used caused me to flare. This also explained my flaring after root canals. Any numbing stuff in the "kane" family causes me to flare.

I had esophageal spasms for a few weeks and couldn't eat. Twink will remember that... I accompanied her to my favorite eating establishment in the WORLD and I couldn't eat because I couldn't swallow. I had periodic issues with the spasms after... but not since starting LDN. Bentyl is what I used that finally worked to calm them down.

I started LDN in December and didn't have an issue. I don't like the cold but I dislike the heat much worse. I have always struggled with tolerating the heat.

My cognitive issues really are not that big of a deal, but they are to me. I won the spelling bee when I was like 10. Grammar and spelling has always been my strong point. Now it's not uncommon for me to mix up their and there... or spell something wrong that I KNOW how to spell. It's not a big deal, but it's like taking the ONE thing I was really good at away from me ya know?