Re: Revised: Advice regarding research and LDN treatment for Primary Progressive MS.

[Guest guest]

Ainvar, your friend is fortunate, the Rocky Mountain MS Center is in

Englewood, CO (I thought it was in Denver but Englewood seems close)

and is highly regarded both by those who live close enough to

utilize it in person, and by many of us who access its resources

(like supplements that are, or are not, good for MS)online.

I recall one woman from an MS board who was so excited about moving

back to Denver so she could return to her medical team at Rocky

Mountain, and she was at a good facility as it was.

Following is the web site, and please note that on the right hand

side there is a link to the government drug trials for MS pages, with

the ability to refine your search. I did not check foe PPMS trials,

but it would be a good link to keep as it updates to include any that

are recruiting.

http://www.mscenter.org/index.php/

Please excuse the way I snipped the post to which I was responding, I

am uncertain of the " netiquette " re: this but since I was dealing

with only 2 points I hoped it was permissable to remove the rest.

To the group, apologies for being OT, I was concerned that my

response, sent privately would not be recognized and would get

deleted.

Tante

> Questions:

> General/Research;

> 1. Can anyone recommend Treatment facilities or doctors in Colorado?

> Close to Denver is preferred but not necessary.

> 2. Any information regarding innovations or trials especially ppms

> specific trials, which are rare, would be greatly

>

> appreciated. Is anyone, especially those researching PPMS interested

> in sharing links and research? I would love to swap

> bookmarks, and for firefox users I am happily using the Scrapbook

add

> on for research, check it out.

>

> I am especially interested in remyelination, nerve and brain

> regeneration, stem cell therapy, and immune regulation, preferably

>

> May the Best of Your Past

> Be the Worst of Your Future,

>

> Ainvar

>

[Guest guest]

Hi,

I have MS and have done a lot of research because I guess I have

always been a rebel and don't take what the first doctor tells me as

being true.

All I can say is that when you do your own research you will find

that even the 'experts' can't agree on causes and treatments of MS.

The 'experts' all stick to their little book with the MS protocol.

Fact is their is no real treatment for progressive MS.

None of the CRAB drugs (Avonex, Rebif etc) are aimed for progressive

MS. They state that the earlier these drugs are started for MS the

better, once you have progressed they don't work.

You will find many theories on MS, chicken pox caused it, a virus etc.

Fact is many areas around the world like northern europe, scotland,

the southern states in australia etc, all cold climates have the

highest rates of MS. Fact is now many other people in hotter climates

get MS.

1 Italian research team (there have been others too) came up with the

theory that MS is a metabolic issue, lack of nutrients such as zinc,

copper vitamin b's etc.

My personal thoughts are the chemicals in our foods has a lot to do

with it, maybe these chemicals stop our body from ingesting the

normal vitamins and minerals we need.

When you have MS the 'experts' tell us our immune system is over

active and we need to supress it. LDN does not supress our immune

system, it boosts it.

Here is a link to a group in England that is raising funds for LDN

research for MS.

http://www.ldnresearchtrust.org/

This group has doctors who have MS and take LDN

They also have doctors who recommend taking supplements, you can find

all the info on that site. You can also buy their supplements which

have been made up especially for MS patients.

I have had MS for over 20 years, have never taken the CRAB drugs and

started on LDN last December and doing fine. I follow Dr Bihari's

guidelines as in taking 3mg LDN because of muscle spasms and

spacticity. 1 day I might try 4.5mg. I also take a high grade fish

oil and sometimes other vitamins, I follow a low fat diet and eat

very little meat, simply because I'm not keen on meat, prefer fish.

I would never tell people they have to do what I do, its individual

choices but its right for me and seems to be working for me.

I have not had any steroids for many years now, have much less

fatigue, far more energy and can do much more now than this time last

year. I do find I need a good nights sleep, can't have 2 late nights

in a row but thats a small price to pay.

I do believe that stress is a big factor with MS.

Hope this helps

Sal

>

> Advice regarding general research and LDN treatment for Primary

> Progressive MS.

>

>

> Basic Medical History: (Slightly revised since original post, more

> detailed info available on request)

>

> I have a friend in his 60's who has recently been diagnosed with

> primary progressive MS at the Mayo Clinic. So far his

>

> condition has been mostly benign with only mild yet gradually

> increasing symptoms of spasticity in the R>L legs. There are no

>

> signs of acute lesions or inflammation whatsoever. He has seen a

> variety of doctors and has gone through thorough and rigorous

>

> testing of nearly every system in his body, genetic testing and all.

>

> His diagnosis was based upon multiple t1 and t2 hyperintensities in

> the thoracic and cervical spine and in the periventricular

>

> and subcortical white matter of the brain. He also has a high level

of

> oligoclonal bands in the CSF a 9 on the index in which

>

> <4 is considered normal. The worst lesions are in the thoracic and

> have damaged approximately 50% of the nerve fibers, which

>

> according to the doctors at Mayo is about how much damage you

sustain

> before you begin to notice symptoms. Their is also minor

>

> disk degeneration, narrowing and stenosis present in the cervicals

> which could eventually lead to impingement of the nerve

>

> roots.

>

> Summary and Exerpt from Physical examination of Mayo Clinic Report:

> (Strength is somewhat reduced at the right illiopsoas. Deep Tendon

> reflexes are slightly exaggerated at the right knee and

>

> ankle. The right Plantar response is equivocal. There is also an

> absence of vibration sense at the ankles and toes, especially

>

> the left foot. Joint position sense is intact. he has some decrease

in

> pin prick apprecdiation distal to the mid calf in both

>

> legs. He has normal gait, but he has some difficulty hopping on the

> right leg.)

>

> Touch pressure temperature and pain receptors all seem normal and

the

> minor sensory deficit and spascticity described above are

>

> the only symptoms of nerve damage.

>

> No other symptoms of MS are apparent. He is nearly pain free and has

> no signs or symptoms of inflammation. He is very

>

> energetic, has better than normal reflexes and nervous responses.

His

> immune system is considered normal with no elevation of

>

> white blood cells.

>

> Other than high levels of plaque and heavy metals in his arteries he

> is as healthy as an OX. To address this he is undergoing

>

> nutritional therapy and oral chelation and may receive intravenous

> chelation as well.

>

> My basic understanding of the situation is as follows:

> (Please feel free to enlighten me in any way possible.

> This is alot to wrap my head around!)

>

> We have evidence of one or more autoimmune attacks breaching the

Blood

> Brain Barrier and causing demyelination and nerve damage

>

> at some unknown point in history. This leaves us with next to no

> treatment options and an unsure prognosis, not knowing if or

>

> when another attack will occur. Unfortunately with ppms there is a

> high probability of symptoms gradually increasing over time.

>

> Questions:

> General/Research;

>

> 1. Can anyone recommend Treatment facilities or doctors in Colorado?

> Close to Denver is preferred but not necessary.

>

> 2. Any information regarding innovations or trials especially ppms

> specific trials, which are rare, would be greatly

>

> appreciated. Is anyone, especially those researching PPMS interested

> in sharing links and research? I would love to swap

>

> bookmarks, and for firefox users I am happily using the Scrapbook

add

> on for research, check it out.

>

> I am especially interested in remyelination, nerve and brain

> regeneration, stem cell therapy, and immune regulation, preferably

>

> without suppressing or decreasing the immune system. If interested

> please contact me via this message board.

>

> 3. I am in the process of researching PPMS and Neuroimmunology can

> anyone recommend any internet crash courses for

>

> understanding the Brain, Nervous, and Immune systems? I am

especially

> interested in understanding auto immune, the various

>

> types of immune cells and their respective roles in immune

regulation.

>

>

> LDN specific;

> 1. I have noticed that most people prior to taking LDN seem to have

> problems with fatigue which are addressed by the Endorphin

>

> boost from blocking the opioid receptors. Any thoughts on how LDN

will

> effect someone with no signs of inflammation who already

>

> has high endorphin levels?

>

> The doctor who proscribed LDN said that blocking the opioid

receptors

> would result in anti inflammatory reactions and may

>

> decrease spasticity. Since their are no signs of inflammation I am

> wondering if this will still help?

>

> 2. Does anyone know where to access Dr Bihari's research especially

in

> regards to the effects of LDN on the Immune system?

>

> I read a post in a forum (which I can not find again) stating that

> according to Dr Bihari auto immune diseases may be treated

>

> by boosting and therefore normalizing the immune system. This

> individual also wrote that the effects of LDN boost and normalize

>

> the immune system by helping increase the helper t-cells which

prevent

> other immune cells from attacking the body.

>

> 3. Any thoughts or info on the probability of LDN increasing immune

> activity and either preventing, relieving, or exacerbating

>

> an attack or relapse?

>

> 4. Any thoughts or info on the possibility of developing dependency

on

> LDN to maintain normal chemistry and Endorphin levels?

>

> Any possibility of interference, especially with longterm use, with

> the bodies natural biofeedback mechanisms regulating

>

> endorphin production?

>

> Thanks in advance to all who reply!

> If we work together we have a better chance of staying informed of

new

> innovations in treatment and the much sought after cure.

>

> May the Best of Your Past

> Be the Worst of Your Future,

>

> Ainvar

>