LDN Information & Check-in 2
 

Starting a new thread,,,Carry on..:D

If there are any questions from the first thread that still needs answering, just copy and paste them here, use the quote
http://neurotalk.psychcentral.com/im...itor/quote.gif
feature to wrap the text.

I have no idea, but, I'll bet Cherie will know and be here soon with your answer..:)

According to Snoopy's posting in the Lesion Location & Symptoms thread, T2 lesions can affect the "heart, including its valves and covering coronary arteries; lungs bronchial tubes":

http://neurotalk.psychcentral.com/thread3436.html

The thing is though, that EVERYTHING below that lesion can also be affected:

http://i12.photobucket.com/albums/a2...vesfromCNS.jpg

I have a T5 (I think) and C 2/3 lesion, and mostly what I get is severe numbness up to that point in my body. That numbness causes pain, sensory symptoms, etc. below the level of the lesion. I will also have bladder, bowel, breathing, etc. problems with it.

I would think you would at least (@ a minimum) have numbness if your spinal lesion is acting up, but it depends on how affected (inflammed?) the lesion is as to HOW MUCH problems you will experience.

What's going on, Kelly?

Cherie

T1 and T2 are lesion types and don't refer to a location
 

http://www.msinfowiki.ca/index.php?t...e_Imaging_(MRI)

The location of the lesion and whether it is still active (inflamation) will determine the sx if any.

:ROTFLMAO:

I was stitting here wondering what Chris was saying :confused:, when suddenly I realized he is talking about T1/T2 brain lesions . . . and I was talking about the "T" lesions of the spinal cord.

He is right that if you meant any old "T2" lesions, apparent in our MRI's of the brain . . . they most often do not correlate to symptoms specifically.

I answered to lesions in the "2" spot on the Thoracic spinal cord (also referred to as a "T2" lesion) . . . and they do correlate quite accurately with symptoms.

Assuming now from your last response that you mean brain lesions :ROTFLMAO:. . .

The active lesions that are 'inflammed' will "enhance" when they use the dye. Even if they are 'older' (T2) lesions that are active again, they still refer to them as "enhancing" lesions (IF they are enhancing again on our MRI).

T2 lesions are the old more "permanent" lesions, that have left plaque, and are not enhancing when they refer to them. They can be exactly the same in the next MRI, or they may have shrunk or grown.

Enhancing lesions usually mean they are "active", and that could indicate you are in an attack. Sometimes they just enhance and you aren't in an attack too . . . and/or sometimes nothing shows as enhancing and you are in an attack . . . but generally speaking, the enhancing one's are what we take the meds for; to "turn out the lights". Hopefully that may also lead to less T2 NON-enhancing lesions (the more permanent type) in the longer run.

Once there is damage (lesions of any kind) in the brain or spine, we can get ongoing symptoms from that lesion. They haven't specifically tied brain lesions with symptoms in the same way as spinal lesions with symptoms . . . but sometimes they try to.

Does that make more sense?

(Thanks Chris . . . I would never have thought of the "other" T2 lesions, as I am a spinal lesion gal. :p).

Cherie

Kitty, it's okay to ask questions, but it really isn't necessary to wave your hand like that! Stay in your seat next time! :D

sally...what was it that had you kinda iffy on the coloidial silver? so far from the press ive been seeing its an effective broadspectrum anti microbial and things dont seem to be able to mutate to a resistant strain because of it. i thought it sounded kinda good. except that part about turning yourself blue if you over do it

I'm not sure but, I read awhile back, that is was a lot of hype and that it could be dangerous..:confused: Just be sure you check the reputable sites about it, before you try it.. :hug:

Dr. Mercola on LDN


Can LDN Really Help Multiple Sclerosis, Rheumatoid Arthritis and Other Autoimmune Diseases?



http://articles.mercola.com/sites/ar...-diseases.aspx

http://tinyurl.com/mercola-on-ldn

LDN has recently been published for one major disorder (MS) in a
peer reviewed journal, J. Mult. Scler. Sept 08.

Abstract: http://www.ncbi.nlm.nih.gov/pubmed/18728058

And how about SammyJo's new book:

"
By Elaine Moore, co-author SammyJo Wilkinson
Foreword by Dr. Yash Agrawal, MD, PhD

The off-label protocol referred to as Low Dose Naltrexone (LDN) modulates the immune system and promotes healing. Relying on clinical trial results and interviews with the leading LDN researchers worldwide, we describe the history of LDN and explain its biochemical and molecular effects. In clinical trials, LDN has been shown to halt disease progression in Crohn’s disease and certain cancers, including pancreatic cancer, and to reduce symptoms in multiple sclerosis (MS) and autism. Ongoing trials are evaluating LDN in fibromyalgia and HIV/AIDS. Anecdotally, LDN has been shown to improve almost every autoimmune and neurodegenerative condition, including Parkinson’s disease and amyotrophic lateral sclerosis (ALS).

Chapter One The War on Drugs, A History of Naltrexone
Chapter Two LDN in Autoimmune Diseases
Chapter Three LDN in Multiple Sclerosis
Chapter Four LDN in Neurodegenerative Disorders
Chapter Five LDN in Cancer
Chapter Six LDN in Autism Spectrum Disorders
Chapter Seven LDN in Wound Healing and Infections
Chapter Eight The Immune System and LDN in HIV/AIDS
Chapter Nine The LDN Experience: A Patient’s Guide to LDN
Chapter Ten The Potential Benefits and Future of LDN
Chapter Eleven Resources
Appendix A LDN Clinical Trials
Appendix B LDN Survey
Appendix C LDN Survey Analysis

A BIG thank you to Elaine Moore for making this book a reality. She is an extensively published author on autoimmune disorders. This book will be an invaluable reference for researchers, practitioners and patients who want to understand the therapeutic potential of LDN."

http://www.ldners.org/

Cherie

Checking in:
I am seeing a big benefit from the LDN since I have been on it for one month now. My worse symptom "Fatigue" seems to have diminished to a very low level. Not gone, but I'll take it! :D Whoo-Hooo

It is very cold out and I had the stomach flu. So I didn't get much of a chance to test it for walking or my endurance. I have to build on that now, now that I can stay away from the Ladies room long enough to appreciate a few good changes. ;)

I started LDN on LarryLDN's Birthday last month. :hug:
Happy Belated Birthday Larry

I am very happy to have started LDN and love my colorful dreams. :rolleyes:
I am on 3.0 mg. The first 10 days I was on 1.5 mg to test for drug sensitivity, which I am happy to say I had no side effects.
Thanks to all :grouphug:

Great news, Lady. :)

Sounds like you may be one of us who looks back over time to notice the changes . . . not that the changes hit you upside the like a 2 x 4. That happened for some of my symptoms too, up to about the one year mark. After that, everything just stayed relatively stable (no real "changes"). . . but at least I could live with myself at where I was by that point. :D

Cherie

Congratulations Lady!

I just ordered my first refill...a little bit late. :o

I don't like having to drop to 3.0 for a few days, but it's better then running out! ;)

I feel fantastic on the LDN and am so excited to get these results. It is really fun to see that so many of us are enjoying the benefits...I tell everyone I know.

Hi all :)! Just checking in. I started 1.5 LDN on Thursday. I quit the narco pain med, Lorcet, cold turkey on Friday. I'm not a taper-down kind of person when it comes to things like this. It has not been pleasant, to say the least :(. I'm guessing that I won't feel the effects of the LDN untll I get over the pain med 'issue'. It's really embarrassing to post about this stuff, ya know? I'm a pretty open book about my life tough :D. I hope everyone is doing great :hug:.

:eek:

What dosage did you cold turkey from, Joelle?

"Loritab and Lorcet are physically addictive. To abruptly discontinue Loritab or Lorcet use could cause seizures or convulsions. It is for this reason, that withdrawal from these medications should be gradual and under medical supervision."

http://www.recoveryconnection.org/dr...et_loritab.php

Is your doc on-board with this change and withdrawal plan? :cool:

What do you plan to use for pain relief now?

This is a narcotic, right? If so, LDN and Lorcet may cancel the effects of each other out somewhat, so you will need to have that out of your system before the LDN will help at all. 1.5 mg doesn't normally help A LOT anyway, for most people, so chances are you'll have to get up to at least 3.0mg before you will notice any difference.

It took me three attempts to get off A/D's, after I had been on LDN for a year already. The withdrawals were not any easier (they were hard!! :eek:) even while on LDN, but the good news is that I didn't need them once I got through withdrawal. :) I did try a more cold turkey response, but I couldn't do it. In fact, I had to eventually had to go on a low dose of another A/D initially, in order taper off Celexa. That was the only way I could get off them.

Please tread carefully, and GOOD LUCK!! :hug:

Cherie

Thanks Cherie and Kelly :). I was on Lorcet 10/650 4 times a day. The withdrawal hasn't been as bad a I expected. I'm really irritable and a bit nauseous. It's been 3 days and I the worst seems to be over. Nope, my neuro doesn't know. My dh is keeping a close eye on me along with daily checkin's from my friend who's a psych nurse. She's dealt with detox patients on a daily basis for more than 20 years. I really don't want to tell my neuro because I don't want this in my records. Yikes! I hope he doesn't follow NT posts! Hopefully, when I reach the 3 mg dose of LDN I'll be feeling much better. Don't worry, I really am doing ok. :hug:

I hope all goes well for you, Joelle..:hug:

That is VERY good, that you are not doing too bad with withdrawals. Amazing, really!! :)

So what is the back-up plan for pain? I know someone who is on Ultram (I think) and LDN together, and I don't think that is a narcotic/contradictory :confused:. Personally, I use Naproxen 500mg x 2, but it does not help for neurological pain. I guess Neurontin might be better for that, but I haven't used it myself.

When it comes to sensory pain, I tend to try to view it as "phantom" (which it is, but I 'visualize' it that way too). If it isn't "real", it can't be hurting me, right? :rolleyes: :cool: 3.0 mg LDN helped a TON for the neurological pain I had for two years prior too, as did A/D's help some when I first went on them.

Good for you that you are getting off this drug anyway! If the LDN does what it should, you might find you feel better just getting off the other drugs that you have come to depend on. :)

Glad you have people watching out for you though!! :hug:

Cherie

This is a great site for pain medications. It discusses what are the Narcotic (Opiates) or what are NSAIDS, etc. It gives helpful information. It is worth the read.

All you need to know about types of pain, pain medication, and what to use for what type of pain. Some interesting help and ideas. :)
I hope it helps.

http://www.painfoundation.org/Public...ptions2006.pdf

Joelle, Brenda, how are you doing? :)

Joelle is the withdrawal from your pain meds over with yet? How are you feeling on 1.5 mg LDN?

Brenda, did you get the renewal of 4.5 mg LDN like you wanted? Are you finished unpacking? I know that takes energy. I hated looking at boxes. I wanted to burn them after a move.:)

I am doing very well on the 3.0 mg LDN. :) I think I sleep too much. :confused: Could I possibly need 10 hours of sleep at night? My eyes are so heavy I can't keep them open. I turn over to stretch and fall back to sleep. I go to bed late and wake up late. I should get a night job, if I could work that is. :rolleyes:

My 4.5 mg pills finally arrived TODAY! I did not have my medicine two days in a row...and I could really tell the difference. I was so tired with brain fog, etc. I can't wait to feel good again tomorrow. :D

I have stopped unpacking, there is not much left to do anyway, AND, it seems we may be making another move this spring - to Missouri! :eek:

I am still in shock, but it looks like a very strong possibility. I'm not sure I am cut out for life on a farm, but it would be so great for my kids. My husband said he will take care of the "outside stuff". I don't even know what that means. :p I do know that he will be in heaven, and he is a man of his word.

Before LDN, I wouldn't even consider something like this. With LDN, a new adventure could be fun. ;)

Lady, I think it is a good thing to listen to your body. If it tells you 10 hours, sleep 10 hours. How are you feeling during the day?

Brenda I can't believe another move is in your future. What a great attitude, making it a new adventure. The kids will love it.

In the day I am fine, feel great (knock on wood), thanks for asking. By 11 pm I feel like it's afternoon and I am cleaning the house. Duh! Something wrong with this picture, ya think! :D

Pre-LDN, I was on these crazy hours but without the energy.

So, I do have more energy, much less fatigue, only at the wrong time. I can say the increase in energy is the LDN, perhaps even some better balance I have noticed too.

I hope you didn't burn your boxes. ;)

I get about 9 or 10 hrs of sleep per day, Lady, but they are split up. The good news is that I don't work, so I can sleep 2 - 4 hours every afternoon, on top of the 6 or 7 that I get nightly.

Before LDN, there were times that I slept 20/24 hours, and other times where I didn't sleep at all. My schedule isn't perfect (I need my daily nap!), but at least I feel great when I am awake, and I sleep good once I am tired.

You are a night-owl anyway, aren't you? We are meant to take the LDN to coincide with our sleep cycles, but I wonder if it makes any difference that you don't normally go to sleep till 3:00 or 4:00 am? :confused:

You could always try taking the LDN at a different time to see if it helps. :cool:

My best time is between 9:00 am and about 1:00 pm, and I get another burst of energy between 5:00 pm and 9:00 pm. I do most of my housecleaning the evenings actually. I can't say it was the same before the LDN, because I was just in survival mode for several years before that.

I'm glad to hear you are doing so well mom2five!

How are you Joelle?

Frank & Twinkletoes, are you both still on LDN? How are you doing?

Cherie

Cherie, I don't know what time to take it. I asked Skip and he just said take it before you go to bed even if it is 3 am. So no help there.
I go to bed at 3, 4 or 5 am and wake 2, 3 or 4 pm. Varies.:) No daylight or sunlight, like a vampire.:)

With ten or eleven hours of sleep, no nap, I shouldn't complain. In the past I have had 3 or 4 hours sleep and a nap for 2-3 hours. That was when I went to bed earlier and worked during the day, 7 years ago. I had to be up at 5 am so I napped when I got home.

Then I thought, what about the people that have to work the night shift and take LDN? These people sleep in the day. What time do they take it? Then the weekends might change for them, then what? Very confused. :confused:

I think when I wake up at 4 pm I am having breakfast. I wonder if the meal-time changing times, has something to do with it? My Neuro says, in so many words, that my internal clock is broken.:eek:

I think I get enough sleep....I usually go to bed about midnight, give or take, and take my LDN right before.

I usually wake up every couple of hours or so, but go right back to sleep. I get up at 9 or 10am do my stretches and arise (with the help of God..:)

Most mornings, I feel rested. I guess I can't complain.

I have had some muscle pain for the past week, so, I so feel for those of you with chronic pain and trying to sleep.:hug:

Hi all :)! I'm all done with the pain med issues :). Now I just have to deal with the pain :(. I guess I forgot why I was taking the damnable things in the first place! The pain isn't neuro pain. It's hip pain from my plodding gait. Nothing else works for it :(. I've tried every other med available. Hopefully when the LDN kicks in I'll have less heavy feeling legs and I won't hit the floor (it's all ceramic tile btw) like an elephant :). I where shoes all of the time to absorb some of the shock but it doesn't help much. Sigh. MS sucks.

Hmm, Joelle . . . sorry to hear about the pain you are in. :hug:

LDN did help my neurological pain, but as you said that's not what you are suffering from. I have relied on Naproxen for "other" pain (and no it doesn't take it away usually), but mine has been temporary so far, so I could push through.

Might I suggest that you call Skip . . . he may have some suggestions for you.

How about physio or massages? Have the xrayed to see if there is anything fixable going on?

Cherie

Although, raising endorphins is supposed to be a Natural pain killer, I have not found a lot of relief of pain. Some, yes, but not all. I use plain asprin and Aleve if bad pain.


(((((((Joelle)))))))

Thanks everybody :hug:. I've been through physical therapy aka torture :). I've had all the ortho testing done on my hips, they were all fine. I even had cortisone injections with mile long needles. My insurance doesn't cover massage therapy and it's pretty expensive. I do go once in a while and it's great :)! Kelly, I wished we lived closer too, we could do the Frankenstein walk together :D. I'm still on 1.5 mg. I think I'll call my neuro soon and ask if I can increase to 3 mg. I've only been on it for about a week and a half. I'm done whinin' for the day :).

Joelle - hopefully bumping up to 3.0mg will help you out with the pain. :hug: I bumped mine to 3.0 after two weeks because I was moving. It seemed to help a lot better with the fatigue at 3.0.

We ARE moving to Missouri this spring. Time to pack again. :rolleyes:

I am so grateful to have my 4.5mg pills this week, it has made such a difference. I will NEVER run out again...this time I am programming it into my phone to refill two weeks BEFORE I run out! :D

I may have said this before, brain fog.;)

This may sound odd, but I always dread my annual Mammograms because they plain old hurt me. While on the LDN I had it done and did not feel any pain during or after. Minor pain, compared to usual. It was at the same place, same woman, same squeeze job. I was all set to wake up sore the next day too, but I wasn't.:)

There must be something in the way that the LDN works, that changes the way your brain perceives pain signals. Now about this MS Hug thingy. Hmm Okay a little at a time. I'll take any positive improvement. :)

Joelle, Good for you! I'm glad you'll ask your doctor since you just came off the pain pills. You did it. Who-Hoo :hug:

After 10 days I went to 3.0 mg. I saw more benefit, with the same first few nights of wake, look around, wake look around. It was not insomnia. I fell right back to sleep. And I still have vivid dreams from day one. 12-15-08.

What I have been doing is I open the capsule/s and put all the contents in applesauce, or pudding on a tablespoon. I thought the capsule took too long to dissolve. This is just what I do.

It is a pain in the neck opening them and not be spilling any. But I think I get more pure drug that way faster.

I have to ask my doctor if it is okay? I just did it on my own, :confused: because pills get stuck when I swallow. :rolleyes:

Lady, I think it's fine because my doctor told me to open the capsules and put them into water. This was suggested to help me titrate up to a higher dose without going all the way to 4.5 at one time. He suggested opening a 3.0 and a 1.5 and putting them into 3 oz. of water and drinking only about 3/4 of it. That way I'd get approximately 3.75 mg. I would think that putting the capsule contents into any kind of easily swallowed food would be fine.

Thanks for the reminder. I have to order for me and for DD. I must call and make an appointment with Dr Bob..:)