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.

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.

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.

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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.

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?

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.

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. 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