LDN- pre/post Liberation?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

LDN- pre/post Liberation?

Postby KikiT » Tue May 17, 2011 12:01 pm

I don't remember reading if anyone on LDN continued taking before/day of/after ....CCSVI procedure. I don't see why not, except if you need to take opiate pain killers, which I do not think are needed.
Anyone??

Thanks :!:
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Postby WeWillBeatMS » Wed May 18, 2011 6:50 am

I can't respond to your question since I am still on Tysabri and also getting rescheduled for the angioplasty with Dr. Sclafani but I wanted to ask you a question regarding LDN. I took LDN about 4 or 5 years ago for a short period of time (like 3 months I believe). My major problem with it was that it gave me trouble sleeping which I already struggle with. And it also gave me some bad dreams. I know there is a large group of people with MS who take LDN though. Do you find that it helps you? And more specifically, are you able to sleep while taking it?

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LDN post de-stenosis

Postby MarkW » Wed May 18, 2011 7:37 am

There is no conflict taking LDN post CCSVI de-stenosis provided you are not taking other immune changing drugs. I advise leaving LDN to 3-6 months after de-stenosis purely to allow you to differentiate between which therapy changes your MS. (LDN appears to help around 20% of pwMS). A key therapy which must be added before de-stenosis is Vitamin D and associated minerals. There is a detailed thread on this already.

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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby CaptBoo » Wed May 18, 2011 7:44 am

Taking LDN at night also interrupted my sleep. I switched to taking it in the morning. no negative effects, but I also cannot specifically point to any improvements due to LDN either at night or in the morning.

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Postby adamt » Wed May 18, 2011 7:57 am

kiki i have taken ldn for 3 years and have not stopped taking ldn before/day of/after the tweo procedures i have.
i had no problems with the procedures
as ldn boosts the immune system only good things can result from this.

wewillbeatms, like said above i have been on 2mg LDN for 3 years and am doing great on it,
my MS progression (SPMS) has completely stopped and i am no worse
bu i did have a slight hiccup after a month of first taking where my mobility briefly got worse, but since then i havent.

the sleep problem affects most people, but after about 2 weeks this went away and i sleep fine now
but id say on average it takes me 20-30 minutes to fall asleep,


MarkW , Do you havce a link to these essential vitamins/minerals?
your idea about doing one at a time make sense but as ldn has stopped disease progression - demylination, it would be too risky for me to stop the ldn
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Postby WeWillBeatMS » Wed May 18, 2011 7:57 am

Mark - What is the recommended daily amount of Vitamin D? 4,000 IU? and how about the minerals?

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Postby patticake66 » Wed May 18, 2011 8:00 am

Mark,
You need to check your facts regarding the percentage of pwms whom LDN works for. I believe the percentage is much higher...check out LDN.org
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Postby Thekla » Wed May 18, 2011 11:22 am

I just read this study about how LDN actually works. It seems that it is not necessary to take it at night. I have just switched to morning to try it out--I do sleep better/deeper. When I was treated, I just skipped the day before, just in case.


The 2nd European LDN conference in Glasgow this year saw the first presentation of a remarkable study into LDN for the treatment of fibromyalgia by Dr Jarred Younger of Stanford University. This is the sort of top quality research that we have been crying out for, and perhaps even more remarkable than the results of the study was Dr Younger’s clarity on how LDN works. The vacuum that has existed in LDN research has been filled by lots of myths and legends such as timing of administration and dosage of the drug. Dr Younger explained that LDN is a “racemic mix” of mirror image right and left handed molecules. This is common in chemistry, and most drugs consist of such a natural mix. It is usual for only one of the sides to be biologically active, but in the case of LDN both sides are active. The right handed molecule blocks the opiate receptors, which confer the action which the drug is licensed for i.e. blocking the action of heroin and other illicit opiates. The more interesting part regards the left handed molecule, which acts on the Toll-like 4 receptors on the surface of immune cells and acts as an immune modulator. Dr Younger studied the effect on microglial cells, a type of immune cells important to the neurological system which become active when the immune system is activated. These cells are important in fibromyalgia, but also in MS , Parkinson’s Disease and several other neurological conditions. The left handed (levo) naltrexone binds to these receptors and reduces the inflammatory chemicals that are pouring out of these cells. This idea makes great sense and fits very well with our findings in the clinic. If this is the mode of action, it fits with the hypothesis of Dr Agrawal and others, and the timing of dose is irrelevant. This is a big discovery, but even Dr Ian Zagon from Penn State who is a big advocate of the opiate hypothesis, states that timing is not an important factor. This would suggest that the opiate-blocking effect of LDN is actually the limiting factor on dose and we should aim to get the highest dose possible that the patient can tolerate, to produce the greatest effect on the immune system. It also puts paid to the idea that LDN is an “immune booster” which should not be used with other immune modulators. In fact it is likely that LDN will be synergistic with these drugs. As if this was not enough for one month, along comes the much anticipated double-blind study on Crohn’s Disease by Prof Jill Smith and Ian Zagon from Penn State. This shows a remarkable 83% improvement in the LDN group, with almost half going into remission. Not surprisingly given the participation of Dr Zagon, they ascribe the improvements to increased opiate expression, but the alternative action could be just as viable. In Crohn’s disease and other inflammatory bowel diseases including Coeliac’s disease, there is an increase in Toll Like 4 Receptor numbers on the bowel mucosa. This could explain the rapid and dramatic response to LDN of many patients with these conditions. Added to the results of MS study by Bruce Cree from University of California in San Francisco we already have a bumper year for LDN research. These remarkable studies will inform future practice and research including our soon to be submitted MS study.
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Postby hannakat » Wed May 18, 2011 1:23 pm

WeWillBeatMS wrote:Mark - What is the recommended daily amount of Vitamin D? 4,000 IU? and how about the minerals?

WeWillBeatMS


jimmylegs has detailed information regarding D3 on the appropriate threads under "Natural Approach" and also has wonderful information about other supplements on the "Regimens" (MS Nutrition-summary pts 1st ) thread.

Hope this helps. There is a lot of wonderful information on TiMS that is not related with CCSVI, so please don't limit your research to this thread only! So many people with experiences and information....don't miss it!
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Starting Therapies Together

Postby MarkW » Wed May 18, 2011 1:33 pm

To clarify: if you are on LDN, its fine to stay on it then have de-stenosis. My advice is simply not to start two therapies close together.

The Vit D thread is now easy to find, cos I bumped it.

I am content at the LDN success figure I stated. I discounted the LDN.org info cos they under estimate drop outs.

LDN has its own forum, please use it. I tried it but it did not work for me but it works well for a good friend taking 4.5mg/day. I don't understand why but that's MS.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Loobie » Wed May 18, 2011 1:57 pm

If you stick with LDN, you will get over the sleep disruptions. Taking it during the day is a decidedly bad idea. I know about circadian rhythms, by there are other rhythms that our bodies go through during the day that are more than just 2x/24 hr. I tried taking it in the morning and felt actually ill at about 2:00 pm every day. I talked to the compounding pharmacist and he explained all the rhythm stuff I'm talking about. It's been years so the proper terms escape me. But after I quit taking it during the day, that went away, I went back to taking it at night, had interrupted sleep for about a couple weeks, and now sleep like a baby on it.
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Postby WeWillBeatMS » Wed May 18, 2011 3:08 pm

Thanks for all your help. I'm going to up my Vitamin D3 intake from 2,000 IU daily to 6,000 (I have the 2,000 IU capsules from vitacost.com) and I will also be getting the Calcium/Magnesium/Zinc info from jimmylegs & Ashton Embry and order some of those minerals. I also am going to see if my present Neurologist will write me a script for the LDN to try again after I have to get off Tysabri in a few months. If not, my former neurologist prescribes LDN.


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Postby pklittle » Thu May 19, 2011 9:16 am

WeWillBeatMS wrote:Thanks for all your help. I'm going to up my Vitamin D3 intake from 2,000 IU daily to 6,000 (I have the 2,000 IU capsules from vitacost.com) and I will also be getting the Calcium/Magnesium/Zinc info from jimmylegs & Ashton Embry and order some of those minerals. I also am going to see if my present Neurologist will write me a script for the LDN to try again after I have to get off Tysabri in a few months. If not, my former neurologist prescribes LDN.


WeWillBeatMS


I was taking D3-5000 for a couple of years per my neurologist. Just went in last week seeking some symptom relief. One change made was to REDUCE the vitamin D to 2000 or less.
As for LDN, tried it, did nothing for me. I feel like I am always drawing the short straw. :(
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Postby KikiT » Fri May 20, 2011 6:39 am

Thanks to all for your input. I am a 9 year LDN user, patient of Dr. Bahari's. Unfortunately he is no longer with us and cannot ask him.
I would like to make something clear, without wasting too much time on the CCSVI forum. We could move to the LDN forum....
Loobie, you are correct, Dr.B was very specific with the time to take LDN. He also did not think it had anything to do with circadium rythem...but rather magnetic fields. On the original yahoo LDN forum,as time went on, posters would reply with their opinions and state them as facts and it became a little like the game "Telephone".
The original few would try to help others but seemed to be ignored after a year or 2. People hear what they want to hear.Some posters feel they have to answer everyones question, whether they know the
answer or not..this is dangerous, unless you are quoting the good Doc or a patient who has actually experienced .
Again. thanks for your response and if you have any LDN questions
there are a few good books very knowledgable users have written.
Please forgive my rambling, but I did get duped with the internet on umbilical cord stem cells...from posters who actually played "Telephone" Thank goodness we have Dr. S...
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Reducing D3 ??

Postby MarkW » Fri May 20, 2011 11:54 am

Pklittle wrote:
I was taking D3-5000 for a couple of years per my neurologist. Just went in last week seeking some symptom relief. One change made was to REDUCE the vitamin D to 2000 or less.

What is your D3 level ? Unless it is above 200 nmol/L I would ask your neuro why. If you don't know - get a test.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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