Infraction for janie: Inappropriate Language, in topic: Reported Post by Moderator #2

[kristin_t]

Hello! As I mentioned in my "Steroids or Not" thread, my DH was DX'ed with RRMS at the beginning of this month. I have been starting to research alternative/complementary/off label MS treatment options, as well as possible causes/contributors of the disease. I would love feedback on any or all of the items below, as well as any other items I should add to my list for further investigation (personal experiences, important cautions, obscure information I may not know to search for, etc.). We have two children and I am also interested in implementing ideas that will combat their risk of developing MS. FYI, at this point DH is not experiencing any symptoms/disability with his MS, so I have not started researching options for treating/coping with those.

I want to thank everyone again for all the help you have been so far and for graciously allowing me to post as a concerned family member. Thanks!

-Diet (MS specific Diets - Wahl's, etc., pH diet, Food allergies/sensitivities, Other)
-Vitamin D (how to maximize levels naturally - I've read using soap after sunlight exposure can interfere with Vit D production, supplement options, etc.)
-Vitamin B12 and other B vitamins
-Other supplements/herbs (flaxseed/fish oil, olive leaf, frankincense, etc.)
-Mercury and other Heavy Metals (Removing fillings, Detox baths and supplements, Cheletc.)
-Hookworms or other parasites
-Electro Magnetic Fields
-CCSVI
-Low Dose Naltrexone
-Adult Stem Cell Therapy
-Measles & Mumps vaccinations
-EBV, Herpes (cold sores) and other viruses
-Cleaning supplies (I think I'm set here. I'd already changed over to vinegar and baking soda for most everything a few years ago for environmental/health reasons.)
-Personal care items, etc. (aluminum in deodorant, etc.)
-Chlorine (drinking water, bathing and swimming - I've heard this can affect gut health)

I'm sure I'm missing a few items as I am still trying to get fully organized...

[stillstANNding]

Kristin,

Is your husband on board w your research? It can be a great help as long as you are a "team."

I had a friend who had a daughter w Juvenile Diabetes (Type I now). The Mom began working for the association to help that disease- committees, meetings, conferences, etc. One day the daughter asked her to please involve herself in anything but diabetes. She had to live it and she didn't want to hear about it all the time- like she was a problem to solve. My friend resigned and worked for the Cancer Society.

Just in case,
ANN

[kristin_t]

ANN - that's a great point. Especially because I tend to get ahead of him on lots of things. But yes, he IS on board with me researching. I enjoy it more and read faster than he does, so we decided it was a good division of labor. He is not necessarily on board with everything my research turns up. (He teases a lot about the hookworms!) I promised to respect what he decides with respect to the information and my opinion. Despite this, yes, he definitely has days/times when he does NOT want to think about / talk about / be reminded about MS. Makes perfect sense to me - I don't like being defined by a single characteristic / aspect of my life and he doesn't either. Thanks!

[agate]

You never know how much a person knows about getting around on a message board but in case you're not aware of it, you can do a search for many of the topics you've mentioned and find posts from this board.

There have been quite a few people posting on this board who have been concerned family members. Having MS isn't a requirement here.

You mentioned hookworms. There was at least one discussion of the helminth idea:

Only registered and activated users can see links., Click Here To Register...

I haven't tried most of the remedies on your list but I've been eating vegetarian food since the mid-1980s--mainly because of the high cost of meat and the mess you have to deal with because of the way it's cooked. Not much grease in a typical vegetarian kitchen.

I've been taking 5,000 IU of vitamin D3 daily for a couple of years now. I like to think that I feel better because of it.

[SalpalSally]

I've been on LDN for over 10 years after failing on Avonex and Copaxone.
Just put LDN homepage in your browser.

[sakonnet]

There's some research being done on a connection between MS and gut bacteria. Sorry I don't have any good links to share. There was an article in a recent newsletter from the Only registered and activated users can see links., Click Here To Register..., but it wasn't there the last few times I thought to look for it.

[agate]

Maybe the article was referring to this study?

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There's also this:

The trial posting for A Comparison of the Predominant Gut Flora in Patients with Relapsing- Remitting Multiple Sclerosis, Secondary Progressive Multiple Sclerosis and Healthy Adults is not listed as active in clinicaltrials.partners.org database. The trial may have stopped recruiting.

Only registered and activated users can see links., Click Here To Register...

A couple of years ago there was Only registered and activated users can see links., Click Here To Register....

[sakonnet]

that was it. I should get over my fear of cooties and start taking stuff from the waiting room

[Virginia]

If you go into "Forum Archives" at the top of the page and click on the link to Braintalk Archives that Mike Wiens posted it will take you to the archives. There is a thread, and I think it is about the third one down that was put together by xoxo who use to be on this board. He started doing so well with his MS that he kind of dropped out except to say a very rare "hello". Anyway, there may be something of interest to you in that thread.

[kristin_t]

Thank you for your responses! Trying to carve out a few minutes to look up the links and search the archive topics you mentioned. Been busy - Kids put a baseball through a window this past weekend. Hopefully this weekend...

Also I do have more information about other studies on hookworms if anyone is interested. I know it's not the most appetizing topic or idea being bantered about, so if I don't get any takers I won't be offended.

We're connecting with a local MS Self Help group in early August. Think that should be helpful too.

[MS w/MS]

For what its worth heres my experiences with an off label use of a drug. I'm PPMS, have been for 5 of my 15 years with MS. Since 2008, I've been receiving Rituxan infusions. It is a treatment for cancer, but has shown so benefits in MS. I get 2 infusions, 2 weeks apart, every nine months. Since I've been on this treatment, my MS has stablized. Prior to this, my MS had been causing me to steadily decline. This treatment, I can honestly say, has made such a difference. I'm so happy to have found this treatment.

mark s.

[SalpalSally]

Happy for you Mark. I hope it continues to keep you stable.

[Parsi]

kristin, no matter what you read or hear, remember that MS is not the same for everyone and it's unpredictable. Also meds that help one person may have little or not effect on another.

Overall, the best general advice for everyone (sick or healthy) is eat healthy, get adequate rest, and moderate exercise. The specifics vary from person to person.

Before trying vitamin supplements, he needs to be tested to see which if any his body is low in. People with MS often are low in B12 and D3. But too much can be toxic.

You did not mention stress and heat. Both can be detrimental to how we feel, though doesn't cause permanent harm.

Good luck with your research.

[kristin_t]

Thanks Parsi. I did not know that regarding stress and heat, but it is encouraging to know it isn't permanent. Thanks!

Mark, I also really appreciate your feedback. A good friend's brother-in-law has PPMS and I think he will be interested in this if he's not already aware.

[Cherie]

The Rocky Mountain MS Center has done a lot of research on Complimentary and Alternative therapies for MS including, where possible clinical trials. Only registered and activated users can see links., Click Here To Register... should be helpful in earmarking some of what others have found helpful. Also, Dr. Alan Bowling has written a couple of books on Complimentary and Alternative Medicine for MS that are just plain good to have on hand.

Rule of thumb generally is that you want to avoid things that boost the immune system since it is thought that in MS the immune system tends to be overactive.
Potentially Harmful Supplements for People with MS
Alfalfa immune-stimulating
Aloe: may interact with steroids
Asian ginseng: immune-stimulating, possibly fatigue-producing, may interact with steroids
Astragalus: immune-stimulating
Bayberry: may interact with steroids
Beta-carotene: immune-stimulating, greater than 10,000 IU/day may produce toxic effects, avoid in smokers
Borage seed oil: possible liver toxicity
Cat’s claw: immune-stimulating
Chamomile: possibly fatigue-producing
Chaparral: possible liver toxicity
Coenzyme Q10: immune-stimulating, may interact with warfarin (Coumadin)
Comfrey: possible liver toxicity
DHEA: possibly immune-stimulating
Echinacea: immune-stimulating
Garlic: immune-stimulating
Goldenseal: possibly immune-stimulating, possibly fatigue-producing
Grapeseed extract: possibly immune-stimulating
Kava-kava: possible severe liver toxicity, possibly fatigue-producing
Licorice: may interact with steroids
Lobelia: multiple possible toxic effects
Melatonin: possibly immune-stimulating
Niacin: greater than 35 milligrams/day may produce toxic effects
Nettle: possibly fatigue-producing
Oligomeric proanthocyanidins: possibly immune-stimulating
Passionflower: possibly fatigue-producing
Pycnogenol: possibly immune-stimulating
Sage: possibly fatigue-producing
St. John’s wort: possibly fatigue-producing
Selenium: possibly immune-stimulating, greater than 200 micrograms/day may produce multiple toxic effects
Siberian ginseng: immune-stimulating, possibly fatigue-producing
Valerian: possibly fatigue-producing
Vitamin A: immune-stimulating, greater than 10,000 IU/day may produce toxic effects, avoid in smokers
Vitamin B6: greater than 50 milligrams/day may produce toxic effects
Vitamin C: immune-stimulating, greater than 1,000 milligrams/day may produce toxic effects, may interact with warfarin (Coumadin)
Vitamin D: greater than 2,000 IU/day may be harmful
Vitamin E: immune-stimulating, may interact with warfarin (Coumadin)
Vitamin K: may interact with warfarin (Coumadin)
Zinc: possibly immune-stimulating, may cause copper deficiency
Taken from the Rocky Mountain Center Website Only registered and activated users can see links., Click Here To Register...

Hope some of this is helpful.