Alternative therapies

[Guest guest]

Hi - I am not the one who sent you the article on Beta 1,3/1,6 Glucan, but I

received it in my mail also. I was going to ask this group if anyone had

heard of this product, or had experience with it. I was thinking about trying

it. The address for the Int'l. Journal of Alternative Therapies (who sent the

article) is Marshall Publications, 1045 Westward Way, Costa Mesa CA 92627.

This product is supposed to help with RA, they claim. What is your opinion

about it? Shirley Hillard

[Guest guest]

SHIRLEYHI@... wrote:

>

> From: SHIRLEYHI@...

>

> Hi - I am not the one who sent you the article on Beta 1,3/1,6 Glucan, but I

> received it in my mail also. I was going to ask this group if anyone had

> heard of this product, or had experience with it. I was thinking about trying

> it. The address for the Int'l. Journal of Alternative Therapies (who sent the

> article) is Marshall Publications, 1045 Westward Way, Costa Mesa CA 92627.

> This product is supposed to help with RA, they claim. What is your opinion

> about it? Shirley Hillard

I first read about this product in the June 1996 issue of the Townsend

Letter for Doctors and Patients. Dr. J. Carrow, M.D. of Tampa,

Florida wrote a rather impressive article on the use of this product.

I don't know anyone who has tried it.

Ethel

[Guest guest]

Joan,

I also eat primarily fresh fruit and vegetables and not much meat. Not by

design, but because this is what tastes best to me. While we were in Oregon

recently we visited one of my husband's nieces who is in her late 30's. She's

a total vegetarian and doesn't even eat cheese or use milk in cooking.

Everything is fresh or soybean. I've got to say, she is one of the most

healthy, fit people I've ever seen. I don't know how long she's been on this

regimen, but she and her husband have a teenaged foster daughter and everyone

is on the same diet - and they all look terrific. No mention of herbs or

vitamins and they may have hesitated to mention them to me because I'd probably

established I'm some kind of reprobate by the end of the first hour. What's

remarkable is that according to her mother, during her younger years and not

that long ago, she'd had an alcohol problem and was a drug abuser. Someplace

along the line she got " motivated " and even ended up giving self help seminars

for a living.

I was told that I can't eat raw fish and to avoid shellfish. I do eat fried

shrimp occasionally, but only about 3 times in the past year. I also dearly

love crab cakes and fried Olympia oysters, but there aren't many good seafood

restaurants in Las Vegas. Probably a good thing. There are various opinions

on the safety of Tylenol but from everything I've read and heard, it's mainly

dangerous for people who are drinking heavily. It's not easy on the liver but

my doctors have all said it's okay in small and occasional quantities. I

wouldn't be surprised if some GI specialists tell liver patients not to use it

just in case they're secret drinkers. Better safe than sorry. I was not told

I couldn't drink but since alcohol makes me sick and has for years, that's no

problem. However, my doctors don't know that I can't drink. Maybe they just

assumed that I wouldn't. I believe that a couple of glasses of wine on rare

occasions is acceptable, according to some theories on autoimmune (non-alcohol

induced) liver diseases. In the long run, each of us has to make the decision

about whether we trust our doctors and we should then follow their instructions

as long as they're working. Even if they're different from what some others

with the same condition are told.

Take care,

Geri

[Guest guest]

Over the years I have included mega vitamins and supplements, massage

and other bodywork, vitamin shots, non-conventional treatments for

controversial stomach/intestinal bacteria, external creams and

lotions, magnetic therapy, homeopathy, energy balancing, and more.

I resisted methotrexate until I found the quality of my life was so

poor I HAD to do something differently. I could see that the disease

was affecting more and more joints and my mobility was really

suffering. I was concerned about long term damage. After a few years

on MTX I again reached a point where I HAD to make a change and I

chose to try ARAVA. I have been on ARAVA for 3 months and I am

feeling better than I have in several years. In fact, I went back to

work part time after being off work for almost 2 years.

I still use massage, a hot tub, water exercise, splints, laughter,

friends and family, an Arthritis Foundation sponsored support group,

hot wax treatments, antidepressants, and counselling as needed to

cope with my life along with meds. I have been considering

acupuncture and evening primrose oil.

My advice: When considering ANY treatment (i.e. herbal meds, MTX)

try to change things in a logical manner, just a few changes at a

time. I found that so much was being thrown at me at once

(supplements, herbs, vitamins, etc.) that I couldn't tell what might

be helping and what wasn't. Added to that is the fact that this

disease is so variable on a daily basis without any intervention. I

found that I was spending a whole lot of money (not covered by

insurance) and I still didn't feel " good " . Finally, I stopped almost

everything and then added things back one at a time and then waited

to see what might be helping. For me, at the moment, I am doing

better on the " conventional " meds with alternative therapies added.

I don't take these " harsh " medications lightly and I continue to

research, learn and consider in order to make the best decisions for

me.

Good luck all on finding what combinations work for you!

LaRita

Thought from LaRita

" Those who suffer the most have the most to give "

M. (davidmbailey.com)

[Guest guest]

No kristin, it's not weird. I feel the same way. I will be leaving work on

Thursday afternoons and I will say to my friends, " Oh goody, I get to take my

shot tomorrow morning. " They look at me like I have a screw loose, but they

understand why I feel that way. I haven't felt well for so long, and now I'm

just bursting out all over with energy, and I tend to wear stupid grin on my

face all the time. LOL ;-)

Carol in Vancouver, Washington

In a message dated 2/26/03 10:07:09 AM Pacific Standard Time,

keboice@... writes:

> From my experience with enbrel - there's nothing to be afraid of at

> all. The needle's tiny, barely feel a prick, and the benefits have

> been more than worth it. Honestly, I look forward to the injection -

> is that weird or what?!?!

> --

> Boice

>

[Guest guest]

Having PA for more than 30 years (I was a teenager when I got it),

I've tryied the craziest things to reduce the pain.

Acupunture, acupressure, special cleansing diets, vitamins and

supplements, chinese medicine, strange " healers " (except for one) -

nothing worked.

I did not want to fool myself anymore.

I am on Enbrel now. Will get a 3rd injection tomorrow. No results

yet, but at least there are people who got help with it. So, there is

a promise!

-

[Guest guest]

I'm having good success with minocycline (antibiotic) therapy. It's

recognized as a DMARD but doctors don't often suggest it. I've only

been on it for a couple of months, but so far it's the best med I've

tried (I've been on plaquenil, MTX, and arava). Almost no side

effects--no blood testing needed. It is a very slow-acting med with

greatest improvement often seen at 6 months.

Sierra

>

> Someone mentioned a friend had a site for this??? I'd like to

check it out.

> My problem is my rheumy has about given up on me because if we do

> conventional treatments, I get sick and have to stop. So, I've

been

> virtually untreated since July with the exception of 3 doses of MTX

which of

> course isn't going to do anything all by itself. I am getting

depressed

> about this....no, I am not Getting depressed, I AM depressed.

Anyway I'd

> love the site and what are MBT shoes????? :-) Carla

>

[Guest guest]

Hi - I'm new here...I have missed most of this discussion, clearly, but when i

saw minocycline and rheumy I wanted to interject something...don't know your

specific diagnosis or anything, but they took my daughter off minocycline over

the summer because it can cause joint pain as a side effect...

nancy

snowdrift52003 <snowdrift52003@...> wrote:

I'm having good success with minocycline (antibiotic) therapy. It's

recognized as a DMARD but doctors don't often suggest it.

Sierra

>

> My problem is my rheumy has about given up on me because if we do

> conventional treatments, I get sick and have to stop.

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[Guest guest]

I've been looking around and noticed that Weil recommended

Lion's Mane (Chinese mushroom extract) and Feldenkrais, a movement

therapy, as possibly helping CMT. I didn't see many references to

these in the archives. Anyone have any experience with either of these?

Sherry

[Guest guest]

As far as movement therapy goes, I can highly recommend yoga for CMT.

CMT is a peripheral neuropathy, and yoga concentrates on the core body

muscles.

Improving the strength of my core body muscles has produced major

increases in balance, coordination, strength, and proprioception, all

as measured objectively in separate physical therapy.

I have a private trainer which does cost me, but the benefits have

been more than worth the cost.

Yoga is the only physical exercise, besides sex, which I do not

experience as torture.

>

> I've been looking around and noticed that Weil recommended

> Lion's Mane (Chinese mushroom extract) and Feldenkrais, a movement

> therapy, as possibly helping CMT. I didn't see many references to

> these in the archives. Anyone have any experience with either of these?

>

> Sherry

>