This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey Cheer -

I will be the trial for thisisms. I have been taking LDN since May of 2008. I have never taken any other drug for my MS. I have suffered from vascular problems for years (varicose veins for which I have had operations) I am hesitant to report anything at this time, except to say that I am not any worse than I was six months ago (yea!), and a friend of mine has commented that my spider veins are not as prominent. She was wondering what doctor I was seeing for vein treatment. I was happy to tell her "no doctor" - just supplements, diet and LDN. The LDN seems to be working for me - I am noticing more benefit from my exercise program, and my energy level has increased.

Sharon

Sharon-
I'm so glad to hear how great you're doing, and that you've found stability.

As you know too well, varicose veins are an example of endothelial dysfunction we can see on the outside-

http://www.jstage.jst.go.jp/article/jsm ... e/-char/en

Sounds like your regimen is working for you...you're now the thisisms vascular/LDN postergirl!
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Glad you are well while on LDN Sharon, wife is stable since started LDN (supplements - restricted BBD - vibro/exercise) although after diagnosis the first few months she has had many relapses.
Edited to add:
http://www.nyles.net/images/naltrexone/ ... rexone.ppt
http://www.casehealth.com.au/case/pdf/T ... _Jul08.pdf
http://autoimmunedisease.suite101.com/a ... _sclerosis
(yes I know they are LDN related but as we started this conversation here it's better to continue in this topic)

Following this thread with interest, but I have to admit the science behind it defeats me occaionally !

I am now taking
Vit C 1000mg,
Iron-free multiv/minearal tablet with high dose Bs,
Milk thistle
Horse chestnut
Vit D 1000mcg
Naudicelle EPO,
Occasional Niacin for flushing (always feel better afterwards, dunno why)
Magnesium at night
Acidophilus


Only thing missing for me at present is alpha-lipoic acid - I am searching for a truly gluten free brand. The ones I have found are not necessarily gf although they say they are. The Coeliac Soc is checking them out for me.

Just realised that when I was talking to Cheer a while ago I said ginkgo brought me out in a rash - sorry, I was thinking of ginseng. Bizarrely, ginkgo is banned in Ireland! Will have to get some next time I'm in N. Ireland.
Does anyone see any "holes" in this regime?

Hi WW...
MS is confusing enough without all the supplement/science mumbo jumbo. The basic premise of the thread is this, MS is a disease of the circulatory system. The lining of the blood vessels (the endothelium) becomes damaged by stuff (toxins, free radicals, bacteria) and the blood leaks particles into the CNS and body, creating damage. Blood flow is slowed down, and for some, the blood itself thickens and coagulates.

Some people show varicose veins, some have reddish brown dots (like my hubby) we can see with the eye. I believe the damage we see on MRIs of people with MS is a breaking of the cerebral endothelium.

OK, so you tell us that niacin flushes make you feel good...this is probably because niacin (water soluble B vit.) is a "vasodilator" It temporarily opens up the blood vessels and allows the blood to flow. It also helps as an antioxidant and binds up those free radicals damaging the endothelium.

So, what other supplements/activities can get your blood moving, bind up the damaging things stopping your circulation? That's what the whole thing's about. My paper lists specifics you can try with diet, lifestyle, exercise, supplements that restored my husband's circulation and helped him feel good (for the first time since dx) I have him on 25 supplements, but the list might be different for you-

I don't see any omega 3 oil on your list, that's a good one to get. Vit. D comes in IU, not mcg. Jeff takes 6,000IU daily and we live in sunny CA. The zinc/calcium/mag supplement is good. EGCG and quercetin have been life changing for his fatigue (they are both super anti-oxidants.)

I'm sure others will have some good suggestions, too. We're trying to get the vessels flowing (like they were in your third trimester!) and healed so that your blood brain barrier returns to health, and your MS stays in remission.
Make sense?
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

DIM -

Thank you for the link to the book Those Who Suffer ....

Thanks AC, it does
Thanks also for the other suggestions. Will source them. Meant 1000iu for Vit D!
I am also on Green Tea in the morning for antioxidants.

Notice you mentioned Jeff's matchbox sized portion of cheese - I can understand his cheese-addiction. I just don't want to give up cheese or chocolate. I followed the Best Bet diet strictly for 3 years. Elisa testing showed up intolerances of soy and eggs as well as gluten and dairy.

Basically I could eat all meat, fish, fruit, veg, nuts and seeds (apart from soy beans) but no dairy, eggs, soy or gluten. It was excruciatingly tough but I was very well on it. I was deficient in calcium though and permanently hungry despite baking as much snack food as I could.

The only thing that's holding me back from doing it again is the amount of preparation and hunger I had to face. Little son takes up most of my energy, not a lot left for sourcing and baking food.

3rd trimester I felt SO awful I've no idea if my blood was flowing well. I was exhausted and sick but perhaps my blood was good

Sorry your 3rd trimester was no fun. I remember being big as a whale, but feeling exuberant (all those hormones and red blood cells!) It was after my son was born, I crashed for a bit.

If I could start a new business, I would deliver affordable, nutritious, organic home-made meals to families like yours. It's so hard to take care of children, work and then shop and cook. Then add a chronic illness on top of it. Part of the reason Jeff is doing so well is that I work part time, and have the energy to prepare his diet and supplements for him. But if I was the one with MS...yikes! And if he had to cook for himself...forget it! I really admire you gals who do it all, and then some.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Wish you could run that business too AC!

I'm not a superwoman though, hehe! I gave up paid employement and I pay a lady for 2 hours of the heavier housework per week. MS made me a super-delegator. Could not imagine "having it all" with MS either.

Cheer if my memory serves me right you have DHEA in husbands regimen correct?
I found that DHEA which declines remarkably after 35-40 years in mens plays critical role on endothelium healing dysfunctions and is one of the reasons it helps so much in cases of cardiovascular problems!
Quite interesting!

Jeff takes 25mg. DHEA daily. His last hormone check was terrific. Testosterone level high normal, all other levels normal.

DHEA is an antiviral, an antioxidant, and the precursor to hormones. MSers are low in DHEA. It's important not to take too much (some doses are way too high at 50mg.) and to have hormonal levels checked at least annually, as well as PSA levels for men for prostate cancer risk.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

The European Science Foundation meets to discuss the role of the endothelium in disease. Cardiologists and cancer specialists met to compare notes on disease mechanisms. I believe it's only a matter of time until autoimmunity specialists are included in this dialogue-



http://www.sciencedaily.com/releases/20 ... 081057.htm
Molecular medicine is coming!
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It is outrageous that you can't buy ginkgo in Ireland! In order to circumvent such nonsense I recommend Iherb.com which will deliver things like DHEA to England. So it will almost certainly deliver ginkgo to Ireland. How dare they ban ginkgo! Perhaps they are taking backhanders from the pharmaceutical industry. After all if people realised how effective herbs were they wouldn't buy things like Vioxx.

_________________
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

I've often wondered why MS rates are high in higher altitude locales like Colorado and the alps...especially since UV rays and vitamin D levels are higher in these places. Came across some articles on brain changes in mountain climbers, and then found some research on endothelial changes at high altitudes.

For people not born at high altitude, a move or relocation to a higher altitude can stress the endothelial structure...an extreme example of this reaction is high altitude pulmonary edema-



There is vasoconstriction at high altitudes for people who are not native to the locale. Sherpas and Tibetans have been shown to have a different genetic makeup which allows them to synthesize more NO- and reduce vasoconstriction-

Genetic contribution of the endothelial nitric oxide synthase gene to high altitude adaptation in sherpas.
http://www.ncbi.nlm.nih.gov/pubmed/16978133

I wonder if people who move to higher altitudes may experience more severe MS symptoms and flares, and be more likely diagnosed as MS, because of the stress on their endothelial structure.
Jeff was in Salt Lake City for a week before his first major flare....
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer I was born in high altitude areas as my wife did, in her province they have too many cases with MS, Parkinson, Altzheimer and other similar diseases although in my area we have very few - almost zero - of the above diseases but we have many cases with diabetes type II.
I don't know what contributes to this but it is strange!