Re: Digest Number 1710

May 29, 2002

The whole bone healing/Vioxx connection is really upsetting. My son (15,

systemic JRA) has been on Vioxx for over 2 years, and it has been his

lifesaver in terms of keeping his fevers (103-104) down. When he's on it he

doesn't have the fevers. But gosh, what have we done to his bones? I know

his bone mass is bad. We've tried to keep him off DMARD's, he's been on

minocin for all this time, and now it looks like the Vioxx is probably as

bad for him as some of that other stuff. I suspect the Vioxx in his leaky

gut issues as well. But we simply can't take him off it right now in terms

of him functioning. I just pray we can get him off of it before he breaks a

bone.

Well, I know you guys don't have the magic answers, I just wanted to

voice this frustration. We tried reducing his vioxx in the last couple of

weeks, but he started with the fevers and night sweats. We can't tell that

minocin has done a thing for him. We're doing lots of stuff - Far Infrared

Sauna, homeopathic drainage, manipulating the diet, vegetable juices, and

we've started him on asulfazine (?) and will probably put him back on

methotrexate soon; we're doing herbs and treatments for bacteria in his gut,

and on and on. I'm going to keep trying to reduce that vioxx as we can.

Jan

May 29, 2002

Jan,

It sounds like you're doing lots of great stuff for your son. I don't

know if you're open to seemingly more esoteric things, but I wanted

to let you know about a few things that have worked well for me. I

have RA since 1998 (virtually all joints frozen) and all of the drugs

made me worse because my liver, kidneys and GI tract were already a

mess. I found an alt. M.D. in 2001 who suggested energy medicine and

it has been a miracle worker for me. I never would have considered it

if I hadn't come to the end of the line, so to speak, in the medical

model.

It works with the energy meridians in the body, on the theory that

energy blockages in the body from trauma of any kind lead to barriers

to motion which lead to pain and disease. It works on a subtle level

which is non-invasive but powerful. It's a great adjunct to any

treatment. I'm listing what I have experience with, but I understand

that there are quite a few modalities that operate in similar ways,

such as cranio-sacral therapy, reiki, Feldenkrais, etc., that you

might want to check out. As with everything, the skill and experience

of the practitioner is very important.

I was virtually bed-ridden a little over a year ago and now I'm

driving, volunteering and taking classes, hoping to be back to work

in the future. If this is of interest to you, feel free to pick my

brain. I know they all sound a little weird, but my results have been

great!

BioSET http://www.bioset-institute.com with a practitioner

Jin Shin Jyutsu http://www.jinshinjyutsu with the book " The Touch of

Healing " by Alice Burmeister on my own, recommended by practitioner

EFT http://www.emofree.com on my own, recommended by practitioner

Integrated Awareness http://www.inawareness.com with a practitioner

Lynne

>The whole bone healing/Vioxx connection is really upsetting. My son (15,

>systemic JRA) has been on Vioxx for over 2 years, and it has been his

>lifesaver in terms of keeping his fevers (103-104) down. When he's on it he

>doesn't have the fevers. But gosh, what have we done to his bones? I know

>his bone mass is bad. We've tried to keep him off DMARD's, he's been on

>minocin for all this time, and now it looks like the Vioxx is probably as

>bad for him as some of that other stuff. I suspect the Vioxx in his leaky

>gut issues as well. But we simply can't take him off it right now in terms

>of him functioning. I just pray we can get him off of it before he breaks a

>bone.

>

> Well, I know you guys don't have the magic answers, I just wanted to

>voice this frustration. We tried reducing his vioxx in the last couple of

>weeks, but he started with the fevers and night sweats. We can't tell that

>minocin has done a thing for him. We're doing lots of stuff - Far Infrared

>Sauna, homeopathic drainage, manipulating the diet, vegetable juices, and

>we've started him on asulfazine (?) and will probably put him back on

>methotrexate soon; we're doing herbs and treatments for bacteria in his gut,

>and on and on. I'm going to keep trying to reduce that vioxx as we can.

>

>Jan

May 30, 2002

Dear Jan,

Sorry to hear about yor son. If he is running fevers, he must have infection somewhere. Have you had his teeth checked? I am also wondering if he has chronic Lyme disease. This can cause JRA. and usually effects the knee joints badly.

HTH,

Rosemary.

Re: rheumatic Digest Number 1710

The whole bone healing/Vioxx connection is really upsetting. My son (15,systemic JRA) has been on Vioxx for over 2 years, and it has been hislifesaver in terms of keeping his fevers (103-104) down. When he's on it hedoesn't have the fevers. But gosh, what have we done to his bones? I knowhis bone mass is bad. We've tried to keep him off DMARD's, he's been onminocin for all this time, and now it looks like the Vioxx is probably asbad for him as some of that other stuff. I suspect the Vioxx in his leakygut issues as well. But we simply can't take him off it right now in termsof him functioning. I just pray we can get him off of it before he breaks abone. Well, I know you guys don't have the magic answers, I just wanted tovoice this frustration. We tried reducing his vioxx in the last couple ofweeks, but he started with the fevers and night sweats. We can't tell thatminocin has done a thing for him. We're doing lots of stuff - Far InfraredSauna, homeopathic drainage, manipulating the diet, vegetable juices, andwe've started him on asulfazine (?) and will probably put him back onmethotrexate soon; we're doing herbs and treatments for bacteria in his gut,and on and on. I'm going to keep trying to reduce that vioxx as we can.JanTo unsubscribe, email: rheumatic-unsubscribeegroups

February 23, 2003

In a message dated 2/22/2003 10:46:54 PM Eastern Standard Time,

writes:

> Subject: Stool constitency:soft then formed now soft again

>

> Once we started enzymes and probiotics about 1 1/2

> months ago - my son started to have formed BMs. It

> was great. Now we have started proEFA oil and Mag.

> citrate supplements. The stool returned to soft large

> non formed stools (not yeasty kind - we have treated

> with GSE x 2 rounds and I think the yeast is gone) I

> have decreased the mag amount from 300 mg to 50 mg and

> and no change in the stool (we have only been on mag

> about 4 days). Could the proefa oil be causing the

> stool change. I thought we were maybe figuring out

> this thing. How silly of me. Could the mag still be

> in his system and causing the stool change? I wanted

> to continue with the mag if possible - I think it is

> helping his auditory sensitivity some. Let me know if

> you have any ideas. Oh yeah, we decreased enzymes

> from one capsule of Zyme Prime and AFP to half cap at

> each meal.. that seemed to make him less fussy - but

> maybe he really needs the full capsule. Thank you all

> for your help!

>

,

It could very well be the EFA oil. We had the same problem with our ds. I

took him off for other reasons, and his stools became normal, and he`s not

constipated much anymore. He still gets tons of mag., so it wasn`t all that.

So, you might want to try taking out for a few days and see what happens. It

only took a few days without for Danny`s stools to become normal. Good luck.

Debbie in PA

mom to Danny, 7 yrs old, HFA

May 12, 2003

I have a nine year old son w/ DS and I held him back when he was 3, that

meant that he started kindergarten when he was 6. It was the best thing that

we did. Socailly it allowed him to better be able to make friends and he

also was not the smallest child in the class. Fight them all the way.

Debra

mom to 11, Adam 9(DS) and 6

December 28, 2004

Grace

We get the virgin coconut oil by the gallon from tropicaltraditions.com. It

has many values in addition to helping with thyroid/weight issues. The Garden

of Life brand is the same stuff. Must be 'virgin' if you are also looking

for a high monolaurin content to provide immune support.

mjh

> Date: Tue, 28 Dec 2004 09:20:18 -0800 (PST)

> From: Grace <foxyfoxgrace@...>

> Subject: Re: Re:

>

> ,

>

> No, I forgot all about it because I started trying other things like the

> flaxseed and other supplements. I'll have to check into that the next time

I'm

> at Vitamin world which will be Monday or Tuesday.

>

> What is bio-identical?

>

> Thanks !

>

> Grace

> angel_lts@... wrote:

>

> Grace, I too have hypothyroidism and I gained weight. I would barely

> eat and I would gain weight as soon I was place a small amount of food

> in my mouth. It was horrible. I found out it was from hormonal

> problems. I am now on bio-identical and I am finally balanced out. Now

> I have to loose the weight.

> Did you ever find the coconut oil? I have read that it can also help

> with loosing weight. Of course eating it moderately.

>

December 29, 2004

MJH,

I currently use virgin olive oil every chance I get, with the virgin cocunut

oil, do you drink it just like that or use it to cook with or add to meals?

Thanks!

Grace

foxhillers@... wrote:

Grace

We get the virgin coconut oil by the gallon from tropicaltraditions.com. It

has many values in addition to helping with thyroid/weight issues. The Garden

of Life brand is the same stuff. Must be 'virgin' if you are also looking

for a high monolaurin content to provide immune support.

mjh

> Date: Tue, 28 Dec 2004 09:20:18 -0800 (PST)

> From: Grace <foxyfoxgrace@...>

> Subject: Re: Re:

>

> ,

>

> No, I forgot all about it because I started trying other things like the

> flaxseed and other supplements. I'll have to check into that the next time

I'm

> at Vitamin world which will be Monday or Tuesday.

>

> What is bio-identical?

>

> Thanks !

>

> Grace

> angel_lts@... wrote:

>

> Grace, I too have hypothyroidism and I gained weight. I would barely

> eat and I would gain weight as soon I was place a small amount of food

> in my mouth. It was horrible. I found out it was from hormonal

> problems. I am now on bio-identical and I am finally balanced out. Now

> I have to loose the weight.

> Did you ever find the coconut oil? I have read that it can also help

> with loosing weight. Of course eating it moderately.

>

January 28, 2005

Hi Carol,

My name is Benton, and I highly recommend the CI center

that did my implant. The surgeon is Dr. s (he is excellent!)

and he has 4 audiologists. The phone number for the audiology dept.

is 972-566-7359. Their website is www.dallasoto.com

They are located at Medical City Dallas.

If you are concerned about insurance coverage, I can encourage you

in two ways: this CI team's insurance specialist has a very high success

rate at getting insurance approvals. Her grandson has a CI, so she is

passionate about it! For those who do not have insurance coverage

for CI's or who cannot afford the portion that their insurance will not

pay, there is the Dallas Hearing Foundation. Dr. s is the founder

and president of this foundation, and I am one of his patients who has

been blessed with very successful CI results, which led to my position

as administrator for the foundation. Please feel free to contact me

if you would like additional information. My contact information is

at the end of this message.

I used to post hear a lot, but have been VERY busy with my job.....

To those who know/remember me: HI THERE - I MISS YOU

ALL AND I MISS POSTING HERE! I still read the postings

but just don't have time to make posts myself anymore.

Kind Regards,

Benton

Administrator

Dallas Hearing Foundation

7777 Forest Lane, Suite A-103

Dallas, Texas 75230

Phone: 972-644-3277

Fax: 972-783-4017

www.dallashearingfoundation.org

-----------------------------------------------------------------------

From: " iowa0616 " <cwhite0616@...>

Subject: Dallas Audiologist

Is there anyone on the list that can recommend an audiologist in the

Dallas, TX area for CI evaluation?

We are hoping that my son would be a candidate for a CI.

Of course the insurance coverage will probably be the biggest problem.

Thanks for your help

Carol

November 21, 2005

Long: I'm a new poster I have been lurking for about a year.

I have MS, DXd in 1990, 61yrs young, I was having an exacerbation

every ten years that I can remember before this year. I developed Afib,

then a silent heart attack the first part of this year, I've been in

the hospital 3 times this year. now taking 7 pills a day. I'm totally

surprised I can take these, I'm " allergic to all meds I've taken in the

past 6years " I can take a few antibiotics as long as I take 5mg

Prednisone a day with them. No supplements/Vitamins, a very long list.

Long story; I changed Drs. in April, I've asked Drs. for LDN, this

one said no, he knew nothing about it, said ask my Neuro, I gave up

on Neuros a few years back I called a close by (35miles) Compounding

Pharmacy last week, he said they will fill my LDN, capsules or liquid

kind, they will send info to my Dr. well! I saw my Dr. Friday, asked

again, I got my 6 month script! He said it was a totally benign (sp?)

med, he had no problem this time, he is a very overworked Dr. I think

it was easier to just give it to me!

I'm a low income disabled Senior, now I have to find out what they will

charge.

Has anyone ever heard of having blood in your Ear? Dr. said he has

looked in a lot of ears but never saw blood. I had to go to Hospital

Friday night for blood tests, I see an ENT Monday morning.

I told the Pharmacist I would post their Pharmacy online for filling

LDN;

United Pharmacy;

ed@...

559-591-6400

Sorry I forgot to mention, I live in Central CA. This pharmacy is in

Dinuba CA, a small farming community.

Happy

November 21, 2005

Hi Happy,

We are located near Salinas, CA. Where are you located. If you would like,

I can send you a copy of the welcome package so that you can get info to

help you with your new LDN journey.

My best

Aletha

Re: [low dose naltrexone] Digest Number 1710

> Long: I'm a new poster I have been lurking for about a year.

> I have MS, DXd in 1990, 61yrs young, I was having an exacerbation

> every ten years that I can remember before this year. I developed Afib,

> then a silent heart attack the first part of this year, I've been in

> the hospital 3 times this year. now taking 7 pills a day. I'm totally

> surprised I can take these, I'm " allergic to all meds I've taken in the

> past 6years " I can take a few antibiotics as long as I take 5mg

> Prednisone a day with them. No supplements/Vitamins, a very long list.

> Long story; I changed Drs. in April, I've asked Drs. for LDN, this

> one said no, he knew nothing about it, said ask my Neuro, I gave up

> on Neuros a few years back I called a close by (35miles) Compounding

> Pharmacy last week, he said they will fill my LDN, capsules or liquid

> kind, they will send info to my Dr. well! I saw my Dr. Friday, asked

> again, I got my 6 month script! He said it was a totally benign (sp?)

> med, he had no problem this time, he is a very overworked Dr. I think

> it was easier to just give it to me!

> I'm a low income disabled Senior, now I have to find out what they will

> charge.

> Has anyone ever heard of having blood in your Ear? Dr. said he has

> looked in a lot of ears but never saw blood. I had to go to Hospital

> Friday night for blood tests, I see an ENT Monday morning.

> I told the Pharmacist I would post their Pharmacy online for filling

> LDN;

> United Pharmacy;

> ed@...

> 559-591-6400

> Sorry I forgot to mention, I live in Central CA. This pharmacy is in

> Dinuba CA, a small farming community.

>

> Happy

>

November 21, 2005