Mom2Five,

Here is up-to-date summary on the 2008 LDN trials (for your doc), as discussed in the November 4th Annual Conference. You (or she) can google the published results from the info provided here:

4th LDN Conference Report – Dr Tom Gilhooly

This year the LDN conference was finally able to report new research, which has either been completed, presented or published. Four studies with LDN and MS have been completed this year, all with promising results. Dr David Gluck opened the conference with a run-through of the recent studies, which he commented that he has never been able to do before. There is a feeling of the drug beginning to come of age albeit with a long way to go.

One landmark is the granting of funds by the National MS Society of America for the preclinical studies carried out by Dr Zagon of Penn State University. The princely sum of $42,000 was enough to fund two very interesting animal studies using LDN. In one study the animal model of MS, Experimental Allergic Encephalitis (EAE) was induced in mice who were then treated with either LDN or placebo. The LDN-treated group had a much less severe version of the illness and were found to have fewer activated T cells against the myelin antigen. In the second study the mice were pre-treated with LDN or placebo and when the disease was induced, EAE was much less severe in the LDN-treated group. These studies lend support to the anecdotal tales of clinical improvement in MS patients, which we have all become familiar with. If LDN had emerged by the usual route then this type of study would have predated any clinical human work, but as this drug has emerged by a novel route we have animal and human studies occurring simultaneously.

Dr Gluck also mentioned the work of Dr Bruce Cree and his team at the University of California in San Francisco who have completed a two month evaluation of LDN compared with placebo, which showed a marked improvement in the MS quality of life questionnaire. It is remarkable that this was a positive study given the short duration of the study-many patients do not notice any benefit until after much longer on treatment.

The final study completed this year was on Primary Progressive patients in Italy by Maria Gironi et al. This longer study showed marked improvements across a wide variety of MS symptoms although bladder dysfunction was not measured which is unfortunate as this is one area which often changes markedly with LDN. This study did address drug safety and concluded that there were no areas of concern in this regard.

Dr Gluck briefly mentioned other studies which have either been completed or are in progress, including a study into LDN and Fibromyalgia which has been completed but not yet reported. Apparently the results were positive, and we anxiously await the details.

Dr Jacqui McCandliss gave an interesting overview of the challenges of carrying out research in Mali where the efficacy of LDN in preventing progression of HIV to AIDS is being assessed. No results are yet available but the trial is progressing, albeit with a pressure on the budget as ever. She also mentioned some of her very positive experiences in treating autism with LDN, an area that surely requires greater attention.

Dr Skip Lenz outlined the wealth of information his team have gathered interviewing patients on LDN who either attend the pharmacy or order by telephone. The satisfaction with treatment is very high at over 90% and interestingly many patients are taking LDN in addition to disease modifying drugs against the general recommendations. This practice does not appear to be causing a problem and is an example of common sense triumphing over medical logic. The immune boosting/ immune suppressing view of treatments for MS is a bit of a flat earth argument. LDN is an immune modulator and seems to be able to be taken with other immune modulators such as copaxone and beta interferons.

Dr Burt Berkson outlined his use of LDN with alpha-lipoic acid in treatment of cancer, presenting several cases where this treatment was successful. He has published some of these cases as case studies but he informed me later that they have been “pruned “ from the medical online database PubMed, presumably by the drug companies as they do not fit their agenda.

I presented our work on the Tyscore assay and our preparatory work for our LDN trial in MS. We had some very good feedback from the delegates who were especially interested in work on peroxynitrites as a possible mechanism of action for LDN. I informed the delegates of our intention to hold a European LDN conference in Glasgow on the 25th April 2009 and several of the speakers volunteered to come over and speak at our conference.

The final contribution was unscheduled but in my view stole the show. Mr Henry Wouk is an MS patient as well as an author and performer. He has had virtually complete resolution of his symptoms on LDN and is writing a book about his experience. He had reached the desperate stage with his condition and was planning to go to Peru for a shamanic treatment. He was given LDN by his consultant in such an off hand way that he did not expect anything from it. He is so impressed with his experience has now put it down in a book called “Google LDN” which should be available before the end of the year. Henry is the son of the famous author Herman Wouk and he is obviously a very talented writer and performer who could substantially advance the cause of LDN. We hope to persuade him to come to the UK at some point to help promote his book and in doing so LDN in general.

This has been a landmark year for LDN and the increasing number of positive studies make it inevitable that the wider medical world will at last take notice. At Glasgow Health Solutions we are involved in a number of areas of research related to LDN which we hope will add to this body of evidence. The next year will be equally exciting and with the first European Conference to look forward to we can be very optimistic for the future of LDN and the autoimmune conditions that it can serve.

PDF format:
http://www.ldnresearchtrust.org/_ldn...s/nov_2008.pdf

Text format, so you can copy and paste:
http://host.politemail.net/LDNResear...1-49BEFC56F63E

Cherie

This is most likely because it is illegal to treat cancer with anything other than radiation, chemotherapy or surgery in the United States. Sad, but true. :Sigh:

As usual, you have come up with the best information and so helpful! Thank you, Cherie. I will continue to feed my neurologist information as well as my Primary Care Physician.

I am so grateful to have found this information on LDN! I really don't believe that things happen by accident. :)

"...is an example of common sense triumphing over medical logic."

Just struck me as humorous. :rolleyes:

Hooray for the MS Society in granting $$$ to LDN testing. I wasn't aware of that.

Thanks so much Cherie, for keeping us up-to-date. I wonder when that author will finish his Google LDN book. That should open a few eyes.

vancouver LDN?
 

[
Hi Cherie,

not sure if i sent u a message yesterday or not/sorry/or perhaps i'm not privey on how to do it...but i live in Vancouver also and am interested in obtaining LDN up there also...if u have any leads, that would be great.

thanks,

J

I didn't get a private message from you, but maybe new people can't send send them until they've posted X number of times on the forum. :confused:

Did you get my message on the other thread?

Once I know your history (if you have a MS dx, whether you attend the UBC research center, etc.), I can help you from there . . .

Cherie

Just checking in to see how all my fellow-LDNers are doing?

I have felt better this last week than I have in a very long time. Energy and more energy....no dizziness....no vision problems. Not sure how long it will last but I'm gonna enjoy it while it's here!

How's everyone else doing? :)

doing quite well
 

I have been taking LDN since the end of August, and I have been doing well. My tremors remain almost nonexistent, and I continue to enjoy a noticeable improvement in my balance, coordination, and gate. I do have some leg and upper-body stiffness, but it is most likely because I am really working hard at replacing my long lost muscle mass.

Glad to hear you are doing so good, ladies!

The only positive thing for me has been stamina and possibly more clarity of thought. Which is good.

But my body is stiff and aches just like when I was on Copaxone. So I recently took my dose from 4.5 down to 3.0. I do feel less achy, but still looking forward to when my massage therapist gets back from his darn honeymoon!!! ;)

Also, I was never dizzy until about 1 month after I began LDN -- don't know if there is a connection.

Does anyone else have issues with nasal passages and easy bleeding?

Once I get through the morning, my body usually loosens up and feels much better.

I just started LDN a couple weeks ago. Dr Skip has me doing one 1.75 then 2 1.75 because I was so tired. That helped with my energy. I have company so that's been a little hard because I don't do my normal routine and I eat a little different. I am constipated. . Next week I will be back to my routine and up to 3.5. My balance is still bad though. I still have to take my baclofen and my bladder is still bad. I am hoping that those symtons will get a little better.

I re-upped my dosage to 4.5mg last night, and I am feeling a bit more spastic today. I will keep at it for a week or so to see if I balance out . . . but our weather has been very strange this year (one day/night is warm and Indian-summerish . . . the next is freezing), so I think my body is confused. :Crazy 2:

I was supposed to have surgery yesterday, but the anesthesiologist refused to put me out unless I had a "consultation" with him, due to the MS. I've had a few operations while with MS, so I don't know what that is about. :confused: Anyway, it's next Monday instead, so I guess my body is in for a bit more turmoil ahead. This is my first time getting surgery on LDN, so we'll see if it helps with my recovery (I haven't recovered well since MS :().

Cherie

Hi Fellow LDNers. Eh, I'm doing ok, I guess. It's just that time of year and I'm a bit out of sorts, but the LDN is still working fine......It must be the ever changing weather, like Cherie said.

Kelly...Good show....keep up the good work..:)

Marion, you too, whoopee and I hope the stiffness subsides..:hug:

Hi Twink..:) Hey, Stamina and clarity of thought are very good LDN pluses. I'm sorry about the dizzyness and stiffness. I hope dropping back to 3mg will help. I have had no nasal or bleeding problems with LDN.....Check with your Doc. It could be a side effect of one of your other meds. Please let us know how it goes, OK..:hug:

Jnet, See, I told you...it's the time of year...dang weather and stress etc..etc..:mad: I hope you find your correct doseage and, in time, your LDN works better for you..:hug:

Cherie, Honey, I didn't know you were scheduleds for an operation. I hope it isn't too serious and will be a complete success and you heal quickly, with no lasting SX...:hug::hug::hug:

Thanks, Sally.

No, no big deal really. I have to get my gallbladder taken out, and if all goes as planned, it should be the "easy" surgery they can normally do.

I just haven't recovered as well as I used since I've had MS, but surgery has never set off an attack or anything . . . so that's good. (I think they need to set up those smoking rooms again, cause I used to bounce back when I knew I had to if I wanted a smoke. HA!:p )

I have some "shadows" in my adrenal glands too, so he was waiting on my second CT scan in case he needed to operate there too. :rolleyes: I had a regular CT several weeks ago, but this particular one I now need is taking a long time to schedule. They've decided to go ahead with this surgery in the meantime, and I'll deal with the other issue later if I have to . . .

Thanks for the support, Sally.

Cherie

Cherie, don't all type As have to have their gull bladders out??:D I did!!

Cherie ~ well wishes for the surgery. May you be blessed with good news and a quick recovery. ;)

I AM SO EXCITED TODAY! My LDN is on it's way. :D

I asked the Dr. "why do YOU suggest LDN for those with MS?" and he said #1. it works and #2. there is no toxicity

I am very encouraged and looking forward to less fatigue!

I'm headed out on a road trip for the next two days. Driving North to Salt Lake City to see the Chief of Neurology about my MRI and get my 2nd opinion on the "extra" unexplainable things on the last MRI.

Thinking good thoughts and feeling very happy today. :)

I'm excited for you, Brenda!! Once you start on it let us know how you're feeling! :)

hi all long time no check in from me.. so far so good i think... i do have a few questions though..


1.) should i feel super hyper and awake with LDN during the day? my mind is running 1000mph and my body is keeping up oddly..

2.) can it make me sleep like i am in a coma at night? ( not really a bad thing since i haven't had a good nights sleep for years)


other then that i feel no different (which is good) but its only been around a month.. so i cant really say if it is doing anything to help with my relapses yet.

Sorry Cherie I answer your questions about Tysabri. I was on for a year and a half. It kept my brain mri stable but my EDSS score was going downhill. So, before chemo, I thought I would try LDN.

Wow, Drew! What pharmacy do you use? I think I'll switch! :rolleyes:

Glad you're doing so good. Don't be such a stranger.

:Funny-Post:

That's it . . . !!! And, I suppose you are 'entitled' to that opiinion too, since you are and ex-gallbladder yourself. :p

Cherie

CONGRATULATIONS, and good luck!!

This "doc" you spoke to, was it someone who often rx's LDN for people who can't find anyone else who will . . . or just your normal doc? :confused:

All the best at your appointment, and I hope it is nothing too serious. Remember though, LDN is apparently helpful for LOTS of ailments, so maybe it will help with any others you may have too. :p

I don't know that I'd want to feel "hyper" (is it like anxiety??), but if it is just giving you mental clarity and energy, combined with physcial stamina . . . I'd say that's fairly common.

Two years earlier (when I didn't have so many problems) I probably wouldn't even have noticed much symptom difference from LDN . . . but when things were WAY bad, then there seemed to be a great change in some aspects. I know you've struggled a lot with the MS PunkD, so perhaps you will notice "significant" changes in some of the symptoms that you've really wrestled with. LDN didn't take away all my symptoms, but the one's that I couldn't live with any more were affected enough that I felt like I wanted to, and could "live" again.

Yes, my sleeping/awake patterns were affected in a big way, and from the get-go. I used to have really bad insomnia, for days on end. I think that was due to the pain which was rectified with LDN, but who knows if that was why I started being able to sleep. However, not being sleep deprived probably contributed to my mental clarity the next day too.

Do you have a fairly regular pattern of relapses? I thought you were PPMS, no?

I was having relapses every 3 months so it was pretty obvious when that stopped. I have had one long'ish attack since being on LDN, but my neuro figures it was because I ignored an infection ... which lead to other infections ... Once I cleared up the "main" infection, everything else fell in place again. (The moral of the story is DON'T IGNORE INFECTION, even while on LDN! ;) )

Hi J. I think that's what puzzles me about the premise on any drug that we might use . . . we might "appear" to be doing better with our MRI's, but it doesn't necessarily mean we are actually 'doing better'. That's why I always say that the important thing is "how we are doing". ;)

I hope LDN works for you too, of course . . . but I'm really glad you are now giving your body a rest from attempting another more heavy-duty drug, especially following Tysabri. Hopefully this is your "ticket" going forward. Good luck!! (BTW, when do you plan to go on a steady dosage of LDN?).

Cherie

This weekend I will be on 3.5 mg for one month, then it goes to 4.5 mg. But we have had company these past days and I haven't been eating very well. I am constipated. They leave tomorrow, today I am eating heathy again and tomorrow I may go to my GP and tell him what I am doing and get checked for candida because I've had infections before going off Tysabri and been on a lot of antibiotics. I read somewhere to ask for the (OAT) test, I'm going to hsve to look into that first.

You might want to try some Benefibre to keep constant, jnet.

Cherie

Great News!
 

First to answer your question Cherie, the doctor is a family practice doctor in PA that Rx's LDN for people because of his belief in it. He did a phone consultation. I will continue to work on my local neurologist for an Rx, but this will get me on it now. Skips pharmacy is sending the LDN! :partytime2:

And now for the good news:

The Chief of Neurology in Salt Lake said that everything looks like MS on the MRI, so no extras to worry about. :)

We had a very candid discussion with him about meds, because he is not my "treating neurologist". He told us that the higher the effectiveness of the MS drugs, the more side effects they have. :(

He also said that the MS drugs focus on the inflammation of the disease - nothing is aimed at helping the degenerative condition of the disease.

He is doing a trial on an oral med right now BG something or other. He was definitely sold on Avonex and does the Tysabri infusions. He said there are about 9 different trials on MS drugs going on right now.

I asked him, "what do you know about Naltrexone?" He told me about the study in San Fran, I told him about the recent grant from NMSS to do a trial on mice in PA. He wasn't aware of that one. He told me that he believes LDN will NEVER get trials done...because it requires 1/2 billion dollars to do the double blind placebo trials. And as we all know, there is no profit in LDN.

I asked him, "why do you think LDN helps people with MS?" He said, "I don't know, maybe it has some anti-inflammatory qualities." Wow...an honest answer. I feel like we opened the door for him to criticize LDN and he didn't do it.

Hubby and I feel very good about the direction we are headed. :Dancing-Chilli:

Right now I take niralax and konosyl, but with company I didn't do it for a few days and now I am regretted it. Hopefully I can get straightened out by next week

Huh?? I have never heard that before.

I'm sure he's a good neurologist.....but that just sounds like an excuse to keep you on something that makes you miserable.

I'm happy that he didn't think the MRI was anything to worry about. I'm excited for you to start the LDN and report back how you're doing on it! :)

I think he was referring to the MS drugs, because I brought up the less than 40% efficacy rate on the CRAB's. Then he used the example of Tysabri and said...the efficacy rate is higher, but so are the risks...and we see that as other drugs are being developed. He is totally sold on the Biogen products, I could tell that right off.

In my mind, the bright spot was that he had heard of LDN and he didn't bash it. Also his honest answer of "I don't know"

Does that make it more clear? I looked back on my wording and realized it might not be very clear. Sorry about that. :rolleyes:

We really were not discussing on a level where he was telling me what to be on, because I already have a neurologist. It was kind of nice to just have a discussion without strings.

He did try to subtly scare me - "Your disease is active right now, the blood brain barrier is being compromised, you need to be on something."

I asked my hubby if the dr. had scared him into putting me back onto my interferons...hubby said no.

oh no not hyper as in anxiety.. just very energized.. much like i use to be before the daily fatigue.. i think i chose to use the word "hyper" just because its been so long since i felt somewhat normal and able to function without feeling like i "needed" a nap... it has done very little for my pins & needles Sx but the fatigue was the big killer in my MS.. there again it is way to early in my LDN journey to say if it will or will not help some of my other Sx.. but i can live with some pin pricks if i have to.

my relapses are usually pretty well spaced at 6-8 months apart but neuro says i am RRMS :confused: but that could also be because none of the CARBs were working for me... but so far since the LDN makes me feel better i am gonna keep taking it.. sure i may have another relapse in a few months.. i may not... but at least ill feel better no matter what happens as odd as that sounds..

This doesn't sound odd to me at all!

I am also hoping that the LDN helps with the fatigue. That is what has been giving me the most trouble. During remissions I used to be able go like the energizer bunny. I'm hoping to feel that way again. You give me hope PunkDizzle. ;)

That is the main thing LDN has done for me. I used to take 1 to 2 Provigil a day and still even take a nap!! Now, I might take 1/2 of one if I know I have things to accomplish that day just to make sure. But I usually have energy to spare and don't need it. It's (LDN) truly been a Godsend to me. And, just to be clear, it's not the hyped up type of energy you get from too much coffee or some sort of stimulant. It's just a good feeling of positive energy and the actual desire to want to get out there and do something! I hope you have a positive experience with it. :)

I was wondering that because a lot of doctors aren't really familiar or experienced with LDN, but it sounds like he is.

:Dancing-Chilli: Great news!!! Now you have a starting place for your MRI activity too, so you will be able to guage how the LDN works for you in that regard.

Yes, the current drugs do work on inflammation, and do not have the same efficacy for neurodegeneration. That's why you will hear people say that they aren't having attacks, yet they continue to decline significantly. In fact, there are some that are of the opinion that inflammation isn't a "bad" thing at all, and a necessary part of the healing that is required with this disease. Seems to defy logic, but long-term studies have not proven our meds to be effective over the long run, for most people, so clearly something's not working the way it is intended.

I'll see if I can find the explanation someone I respect very much (but is on the CRABs himself, not LDN) gave me for how LDN might affect neurodegeneration. If I haven't come back in a week or so (ramping up for surgery right now), remind me please ...

My neuro is involved in that BG trial too, and she was expecting some good results. I haven't heard anything negative yet, so I'm keeping my fingers crossed . . .

Cherie

This is what they do to everyone, SCARE them into trying a mainstream therapy, even though it is obviously not working for you or you wouldn't have this "activity" (you've been on them all along :Ponder:).

Ok, so let's just see what happens from here... :cool: and I would love to be a fly on the wall if you were to go back to "visit" in a year from now. :p

Here's hoping LDN is your ticket. :hug:

Cherie

Well, I guess if you are normally still having relapses, it has to be RRMS or PRMS. I just remember your posts from MSW a few years back, and I thought I recalled they had you in the PPMS ... probably just my memory playing tricks. :D

So, when should you be due for another attack, if they are 6 - 8 months apart?

Please treat infection right away though . . . LDN will not stop those attacks. :(

I'm glad to hear it isn't an anxious-type of energy, and given that, it sounds like a "normal" LDN side-effect to me. :D One warning though; DO NOT OVER-DO THINGS JUST BECAUSE YOU CAN!! No roller coaster rides or trampoline tricks that will jar your spine, and be prepared to REST to catch up if you do have a very active days. We can still crash on this stuff ...

Cherie

I will try to remember to remind you, because I am very interested. Thanks again, Cherie. You are so generous with your knowledge and time. I appreciate it.

Do you have to stop taking the LDN temporarily for the surgery?

You are so right about this! :I-Agree:

I need to be better at documenting so that I have a record as well. Just thought of that.

The LDN should be here any day now! :Head-Spin:

Wow, the discussion went back almost three years, and I had a hard time finding the information. In fact, the forum where he posted it crashed for about 3 months a few summers ago, so it took a pile of googling to find bits and pieces of this reference. :eek:

So it seems it has to do with "Glutamate excitotoxicity being an important mechanism in autoimmune demyelination", and that was described in the following link:

http://www.biomedexperts.com/Abstrac...iple_sclerosis

When I asked which products might help us, he responded with "Current drugs (CRABs) generally seem to work by preventing inflammation, yet disability seems to be more a result of neurodegeneration. Glutamate excitotoxicity seems to be a factor in neurodegeneration."

Some products that he identified as potentially helpful were:

- Riluzole; drug already approved by the FDA for ALS and inhibits glutamate, hence is neuroprotective.

- Cannabinoids inhibit glutamate.

- LDN also serves this function.

- Vitamin D

Also, in my search I found one of the articles on inflammation perhaps being part of our "healing process":

"However, it should be stressed that inflammation does not have only a detrimental effect in MS. In fact, parts of the inflammatory events are crucial for the control and conclusion of the acute phase of damage and it is probable that they actually favor regeneration and recovery"

http://cat.inist.fr/?aModele=afficheN&cpsidt=18133960

Of course, there's always information to contradict everything we hear somewhere else :rolleyes:, but thinking "inside the box" hasn't worked, so I'm always open to new ideas. ;)

Cherie

Oops, forgot to answer the question about LDN and surgery....

At first the anesthesi... said I shouldn't take it because apparently they always use narcotics WHILE a person is under. She said the anesthetic only makes us sleep, it's the narcotics that stops the pain (while we are sleeping).

She asked what happens to me if I don't take LDN for a day, and after explaining that :eek:, she said they would just jack up the narcotics a bit instead to combat the effects of the LDN. She's not too worried about it because it will almost be out of my system by the time I have my surgery anyway (about 14 hrs after taking it).

BTW, I knew we couldn't use codeine either with LDN (so no Tylenol 3), but she told me that codeine IS a narcotic (when I said "I can't use codeine or narcotics"). I never knew that.

Cherie

Very interesting...we will think happy thoughts for you.

And thank you for the information. I have some reading to do. ;)

howdy all sorry i have been distant, been thinking about going back to 3mg for a couple weeks, Deb and I have discussed it, with an outside influence i decided last night I would see, my legs have been bad lately and if yall recall that was the last thing to feel better when i started LDN, well that is gone the pain is back big time and I really dont want to add another med so shall try 3mg again and so far I woke at 8 ish , pretty late for me but am not tired yet so fingers crossed,

I hope this finds everyone doing as well as can be, and gobble gobble

I am really surprised.
 

I am really surprised. Due to poor planning on my part, I ran out of LDN yesterday, and didn’t get my refill until today. So I was without LDN last night for the first time since I started taking it. I was fine this morning, and figured that missing just one dose probably won’t do much of anything. Well, I was wrong. The very first MS symptom that LDN helped with was my tremors. Oh how quickly I forgot what it felt like to have difficulty controlling my fingers/hands/arms. My intention tremor is back, not full force, but very noticeable. In fact, I am having problems typing, which is something that I haven’t felt since I started LDN. What a luxury it is to be able to take LDN tonight, and know that I will be much improved in short order. I guess being reminded of how things could be much worse is a good idea now and then.

Well, sorry this is gross, but I started to go to the bathroom a little today. I need to go a lot more. That is my goal for the next week or two. My legs are week. I think if I got my digestive system working I might feel better. Boy, they are calling me at USC trying to get me back on Tysabri. I feel it's for the money.