Question?

[Guest guest]

Hi - there are quite a number of people in this group with Reiter's. Hope some

of them will chat to you.

Chris.

>Does anybody out there know of any sites that sre for people with Reactive

>Arthritis(Reiters Syndrome)?

>

>Thanks

>J

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Rainy,

This was good advise you sent to . I know for the longest time I

didn't think the Metho was doing anything. I was very wrong, It was helping and

I am glad to be back on it. I just wish it would kick in sooner. It is

helping, I wasn't able to wear my contacts a week ago and now I can. My heart

goes out to , I think someday he will do something in medicine to help

other children.

How are you doing? I know you were sick for awhile. I am still behind and

trying to catch up. Seems I get everything in order and back on track and I

have to go to the hospital again. I am going to take 's advise and have

Laurie help me with the Mayo and Hopkins site. I have nothing to loss.

I'm not real good on the computer so my daughter can help. Plus has

offered to help out.

Me Mom

Rainy wrote:

> Hi Shel & :-)

>

> Maybe has " forgotten " in some instances how bad the pain was and can

> be. I know I do that. So maybe now when he goes into a major flare, after

> feeling well for so long, the pain comes on and is overwhelming to him. That

> is how I was this past week. Sometimes I am even thankful for those days

> where the pain is so bad I cry. Because it reminds me that I do have days

> where the pain isn't that bad and reminds me to embrace those days and take

> advantage of them. hitting puberty could also be aggravating his JRA.

> I remember when I was 15 or so and how I'd wake every morning unable to

> move. Since we know hormones play a roll in this disease somehow, I am sure

> it may be aggravating some. Since my JRA hit when I was hitting

> puberty, maybe 's will do the opposite and just go away!

>

> ~Rainy Sue

>

> Re: [ ] Re: Question?

>

> > This may sound strange but over the last yr i have noticed something.

>

> > feels really good more then half the time which is great and so wonderful

> but

> > when he does go into a major flare he really whines alot. I mean i

> understand

> > why he does but i was trying to figure out if it was from feeling so great

> to

> > feeling bad again or if it was from not always being the center of

> attention

> > or if it was from puberty or maybe all of the above. I wanted to what

> ya'll

> > thought?

> >

> > shelly

>

>

[Guest guest]

Hi Shel & :-)

Maybe has " forgotten " in some instances how bad the pain was and can

be. I know I do that. So maybe now when he goes into a major flare, after

feeling well for so long, the pain comes on and is overwhelming to him. That

is how I was this past week. Sometimes I am even thankful for those days

where the pain is so bad I cry. Because it reminds me that I do have days

where the pain isn't that bad and reminds me to embrace those days and take

advantage of them. hitting puberty could also be aggravating his JRA.

I remember when I was 15 or so and how I'd wake every morning unable to

move. Since we know hormones play a roll in this disease somehow, I am sure

it may be aggravating some. Since my JRA hit when I was hitting

puberty, maybe 's will do the opposite and just go away!

~Rainy Sue

Re: [ ] Re: Question?

> This may sound strange but over the last yr i have noticed something.

> feels really good more then half the time which is great and so wonderful

but

> when he does go into a major flare he really whines alot. I mean i

understand

> why he does but i was trying to figure out if it was from feeling so great

to

> feeling bad again or if it was from not always being the center of

attention

> or if it was from puberty or maybe all of the above. I wanted to what

ya'll

> thought?

>

> shelly

[Guest guest]

Rainy Sue,

I never meant that YOU said that they stopped or slowed damage but that

their advertising and websites say that. Maybe I had it for a long time and

it had to get to a critical point for the pain to start. It just seems that

less than 4 years is a short time to totally destroy 2 major joints to

replacement point. They both worked to an extent but since I am on no pain

management don't know if they worked as expected. I know that the disease

CAUSED the damage. At least I don't sleep all the time. You are a wealth of

information as in . Thanks!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http:www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/KuddleKrittersDairyGoats/index.html

http://www.homestead.com/KuddleKraft/index.html

[Guest guest]

You could ask the Speech therapist.

We discussed this during Lindsey's IEP. The teacher wanted Lindsey to use

one, but the SLP decided against it.

Jennie

[Guest guest]

Have 2 kids hanging off me but check the bookmarks area where I

earmarked some stuff in the archives.

denise

> Hi all, Where would I find one of those voice boxes, or

communication

> devices that I hear everyone talk about? What exactly do they do,

and

> how effective are they? About how much do they cost? Ok, so I had

> more than 1 question...haha..have a great day all!!

> Liz

> http://kidstalkback.tripod.com/kidstalkback/

[Guest guest]

Hi Ann,

Sorry you're feeling so bad at the moment.

The herxheimer reaction is directly related to taking the antibiotic. No

antibiotic,

no herxheimer. The more antibiotic you take, the more intense the herxheimer

is. The trick is to take enough antibiotic to start reducing the infection which

triggers the disease, while not taking so much that you can't tolerate the

resulting

herxheimer.

So, no, we haven't heard of anyone dying from a herxheimer. If you take the

antibiotic and then feel increased pain, or flu-like symptoms, increased itching

or discomfort, then you can simply reduce the amount of antibiotic you're

taking.

If it's a herxheimer, then the reduced dose will reduce the amount of discomfort

from the herxheimer. It's common for someone to feel better or worse in a

pattern

related to the days they take the antibiotic.

That's why Dr. Brown started his patients on only about 50mg minocycline or

doxycycline on Mon and Fri or 50mg Mon Wed and Fri to reduce this reaction as

far as possible.

By the way, about 20% of people don't experience a herx, and scleroderma

patients

experience it less often than, say, RA patients.

Chris.

>Hello,

>Hope everyone is feeling better. This is probably a strange question, but

>has anyone ever died from a Herx? Are had long lasting reprocussions from

>one? Just wondering. I would like to know for sure what to expect in case I

>have one.I hurt so bad all the time, How would I know if I was having one?

>Warmest Hugs!

> Ann

>maryannbell@...

>

>

[Guest guest]

At it's highest my RF factor was 220. It was 33 at the time of my last

labs.

Regards,

Dee

rheumatic Question?

> Of all the people in this group that have achieved remission or 70% or

better improvements, how many of you have had rheumatoid factors and how

high were they?

>

>

[Guest guest]

3 years ago when I started Minocin my RF was over 400 and ESR was 80+, I'm

in 100% remission today with no symptoms of RA. My last labs were RF 22 and

ESR 1

rheumatic Question?

Of all the people in this group that have achieved remission or 70% or

better improvements, how many of you have had rheumatoid factors and how

high were they?

[Guest guest]

Thank you for sharing your experience with me. l thought that 100%

remission was all labs returned to 0 (normal) and off AP. At least that is

what l have been told and also Dr. Brown made references to this. l am glad

for you because remission or not, having ones life back under any

circumstances is wonderful. Best of health to you and again thank you.

Ginger

rheumatic Question?

>

>

> Of all the people in this group that have achieved remission or 70% or

> better improvements, how many of you have had rheumatoid factors and how

> high were they?

>

>

[Guest guest]

Thank you Dee. How long have you had the disease and how long have you been

on AP therapy? How severe are you?

Ginger

rheumatic Question?

>

>

> > Of all the people in this group that have achieved remission or 70% or

> better improvements, how many of you have had rheumatoid factors and how

> high were they?

> >

> >

[Guest guest]

Hi Ginger,

The RA symptoms began in October 1999. I didn't know then what was wrong

with me but I knew it wasn't good. It started out with terrible pain in one

foot and life as I knew it went downhill from there. At my worst I had

little use of my hands which were very badly affected. I could not close

them to make a fist no matter how hard I tried. At this point I had to come

out out of denial that " there's nothing wrong with me " and get help. I got

to a rheumatologist in December of '99. He first put me on 25 mg of Vioxx.

Didn't help. He then tried 50mg of Vioxx. A little better but not much.

Now he's talking about the " taking the next step " didn't like the sound of

that. I stumbled across Henry's book during my exhaustive search for a

better way. I read it from cover to cover, found rheumatic.org and this

group, and went to my doctor armed with info. He reluctantly agreed and to

this day will not use AP unless a patient asks for it. Even after he's seen

what it can do. Go figure. I never used any of the other drugs because I

found AP early. At my worst I could barely get my head off the pillow to

get my kids off to school. Fast forward 2 years and I've just finished

painting almost all of our house after a major remodel. There's no way I

could have done that 2 years ago.

Regards,

Dee

rheumatic Question?

> >

> >

> > > Of all the people in this group that have achieved remission or 70% or

> > better improvements, how many of you have had rheumatoid factors and how

> > high were they?

> > >

> > >

[Guest guest]

Hi Dee,

l hope you and others will continue sharing your stories with the group. lt

certainly gives hope and encouragement to those who need it. l did ask my

doctor why the medical community would not except this therapy. He told me

and l quote, because there is no data from Dr. Brown showing his experience

with the treatment & how well it worked. He said although he felt many will

use the treatment if asked, there has not been enough documentation to prove

that it works for large groups of people. He study the trials which were

small and using large doses and found it only worked for a few. He will

offer the treatment to his patients if asked. At least he is willing to try

anything and to me this is good. Again thanks Dee and l wish you lots of

health and happiness and hope many others can achieve what you have. Warm

Regards.

Ginger -----

Original Message -----

From: " Dee Levine " <ljdsll@...>

<gincur@...>

Cc: <rheumatic >

Sent: Thursday, February 13, 2003 8:58 AM

Subject: Re: rheumatic Question?

> Hi Ginger,

>

> The RA symptoms began in October 1999. I didn't know then what was wrong

> with me but I knew it wasn't good. It started out with terrible pain in

one

> foot and life as I knew it went downhill from there. At my worst I had

> little use of my hands which were very badly affected. I could not close

> them to make a fist no matter how hard I tried. At this point I had to

come

> out out of denial that " there's nothing wrong with me " and get help. I

got

> to a rheumatologist in December of '99. He first put me on 25 mg of

Vioxx.

> Didn't help. He then tried 50mg of Vioxx. A little better but not much.

> Now he's talking about the " taking the next step " didn't like the sound

of

> that. I stumbled across Henry's book during my exhaustive search for a

> better way. I read it from cover to cover, found rheumatic.org and this

> group, and went to my doctor armed with info. He reluctantly agreed and

to

> this day will not use AP unless a patient asks for it. Even after he's

seen

> what it can do. Go figure. I never used any of the other drugs because I

> found AP early. At my worst I could barely get my head off the pillow to

> get my kids off to school. Fast forward 2 years and I've just finished

> painting almost all of our house after a major remodel. There's no way I

> could have done that 2 years ago.

> Regards,

> Dee

> rheumatic Question?

> > >

> > >

> > > > Of all the people in this group that have achieved remission or 70%

or

> > > better improvements, how many of you have had rheumatoid factors and

how

> > > high were they?

> > > >

> > > >

[Guest guest]

Dr. Weil answered a question about coral calcium on his website. I have

copied it below...

Counting on Coral Calcium?

" I have been reading about the use of coral calcium to treat cancer as well

as diabetes and many other health problems. What do you think of this

research? "

-- Donna Lally

(Published 06/18/2002)

Coral calcium is an aggressively promoted - and pricey - product that

supposedly provides incredible health benefits. Coral calcium is said to

remove chlorine and other harmful elements from water while adding good

ones, making your body more alkaline, boosting the immune system and

treating everything from fatigue and digestive disorders to cancer.

Many of these claims are based on the famed long life and good health of

Okinawans who supposedly drink water containing coral calcium. True, Okinawa

has the world's highest concentration of centenarians, the longest

disability-free life expectancy, and a very low rate of heart disease.

Obesity and such common Western diseases as breast and prostate cancer are

also rare there.

Researchers studying the remarkable health of the islanders have found that

their diets are far superior to that of most Americans (see The Okinawa

Program, son Potter, 2001). Traditional Okinawans consume at least

seven servings of vegetables and fruits daily, an equal number of grains,

two daily servings of soy products, green tea every day and fish rich in

omega-3s (several times a week). Meat, poultry and eggs account for only

three percent of the Okinawan diet.

Elderly Okinawans are more physically active than elderly Americans and also

enjoy strong social networks and community support. I believe their good

health has much more to do with diet, with their physically active

lifestyle, and with community support than with their drinking water.

Furthermore, the notion that you can enhance health by making the body more

alkaline has no scientific basis. Nor is there evidence that drinking

alkaline water does anyone any good. Alkaline or " hard " water (due to high

calcium concentrations) is common throughout the western United States but

to my knowledge it hasn't protected people in that region from the medical

problems that occur elsewhere.

I do not recommend coral calcium. I have seen no scientific research

supporting any of the health claims made for it. Furthermore, these products

may be contaminated with harmful heavy metals. I certainly wouldn't rely on

coral calcium to treat cancer, diabetes or any other disease.

Dr. Weil

Re: rheumatic Question?

> Fossilized coral calcium has a much higher content of naturally occurring

> trace minerals. This is most likely due to the collection process.

[Guest guest]

Thanks, , for refreshing our memories on this sensible advice from

Dr.Weil. I had even sent this information to a friend some time ago and

then conveniently filed it away only to forget about it.

Ellen

Re: rheumatic Question?

>

>

> > Fossilized coral calcium has a much higher content of naturally

occurring

> > trace minerals. This is most likely due to the collection process.

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hello (don't know your first name, sorry),

Rather than being 'autoimmune' diseases where the body attacks itself

for no reason, Dr. McPherson Brown believed that these diseases

are triggered by infection. Minocycline and other antibiotics gradually

reduce the infection and meanwhile we boost the immune system as much

as possible through good diet and supplements to help the body recover.

When you get pain the day after you take minocycline, it is because the

antibiotic is attacking the infection. The organisms give off toxins

when they are attacked which travel around the body, causing the

increased pain. The pain you're experiencing the next day is actually a

good sign that the antibiotic is working for you.

If you're experiencing more pain than you can tolerate, try reducing

your dose of minocycline slightly. If you can tell us what doses you're

taking, we might be able to help more.

Hope to hear back from you soon,

Chris.

On Tuesday, September 23, 2003, at 09:17 AM, Mae Folk wrote:

> Hello,

> Seems like I always get so much more pain the day after I take

> Minocycline.

> Does anyone else have this? On the list of things to avoid with

> diseases

> especially if its autoimme. is antibiotics, so how is Minocin going to

> make

> things better? I just can't seem to get the hang of this. Also does

> anyone

> know a good product that will take away this pain?

> Thanks,

> vjeemt2@...

>

>

[Guest guest]

Hi Mae! Geoff here.

You wrote:

> Is it ok to take cortizone while taking the Minocycline? I am in so much

> pain, I have been tempted, but I had a shot of Kenolog last January, and it

> only helped a little for such a short while. I would appreciate hearing from

> anyone that has something to alleviate the pain, other then strong narcotics

> and the likes.

Sometimes you don't have much of a choice. First: inflammation must be under

some control for the drug to get to the joint. Second: it's very unlikely a

person will continue any treatment if a portion of that treatment involves

having no life while being subjected to unending, excruciating pain. Third: you

may not have access to alternatives due to geography, time, money or some

combination thereof. Thus you just may be left with, better this than nothing

at all. If you have access to alternatives, then something like RheuMax may be

helpful and safer.

Eventually,if the therapy goes well, you will not need any of these things at

all. But getting there can be a very bumpy road indeed.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

(Courtesy: Captain Cook's www.800-800-cruise.com)

[Guest guest]

Hey, Ann,

Sally here-it's almost 11 pm so I will NOT call you:)!

Definitely get the cortisone or whatever steroids for short-term use to

control pain and inflammation. Ask your doc for a " Dos-Pak " so you can get

the pills and not the shot.

I take about 10 mg to start and if that works I cut it down to 5 mg the next

day and 2.5 the next. Usually that is enough. I always try to save back

pills. That way if I'm flaring I do NOT have to go begging to the

" demi-gods " for pain relief. Think steroid Dos-Paks usu come w/starting

doses of 40 mg, then you wean your way off of them-ie, 40-35-30-25mg, etc.

You should always take the lowest dose that is effective for you as steroids

do have a host of pretty devastating side effects.

Love ya & I'll try to call!

Sally

rheumatic Question?

> Hello,

> Is it ok to take cortizone while taking the Minocycline? I am in so much

> pain, I have been tempted, but I had a shot of Kenolog last January, and

it

> only helped a little for such a short while. I would appreciate hearing

from

> anyone that has something to alleviate the pain, other then strong

narcotics

> and the likes.

>

> Best Wishes To All!

> Ann Bell

> vjeemt2@...

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

This is Joanne I am wondering if anyone out there is having stomach problems? I have taken LDN around 40 days and once in while since I have started ldn I experience nausea. Thanks in advance for any response. JL

-----Original Message-----From: jdgcasac [mailto:JDGLIBRA@...]Sent: Wednesday, December 01, 2004 11:45 PMlow dose naltrexone Subject: [low dose naltrexone] And then there were none...almostOne more post to give an update. RRMS here and I started taking LDN on September 29th 2004. Day one, energy that I haven't felt in years! And no more leg tremors as soon as I take it, every time! Here it is 2 months later and I still have amazing energy, now with another added benefit at 3mgs, no more bladder meds needed. I stopped taking my bladder medication last week, just to see if there was a difference and there is! Now it's as if I am still taking the medicine. Also stopped taking my amitriptyline to help me stop crying during TV commercials...LOL! I was crying for no reason whatsoever! Game show? I cried. Comedies? I cried. Commercials...and I am not talking those killer Hallmark ones, I am talking folgers coffee for petes sake...I would cry! Well no more!! No more crying at the drop of a hat and NO other medicines but LDN! I am a relatively drug free woman, except for LDN. I can't wait to go to my very skeptical neuro next month to spread the word on what LDN can do! If it weren't for the info I have read here, I never would have tried it. So to all of you who post here...I THANK YOU! And to OLDMSPRO, CJ, my friend...THANK YOU for telling me about it to begin with! Joan

[Guest guest]

I have had nausea issues for at least the last year. I have been on LDN

over two years. I think it may be MS related or perhaps something else.

It does not seem to correlate with LDN. About once a month I take two or

three days off from LDN somewhat as suggested by Dr. Lawrence. It does not

change anything when I do. Everyone is different, one has to figure out

everything concerning LDN for ones self. The time of day when taken seems

to make a difference. Later at night in the summer 11 to midnight(for me

at least); earlier at night in winter 9 to 11. I live in Maine where the

daylight cycles are a mite extreme.

Good luck to everyone,

B.

Original Message:

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

From: Joanne Longley painter907@...

Date: Thu, 2 Dec 2004 10:28:42 -0500

low dose naltrexone

Subject: RE: [low dose naltrexone] question?

This is Joanne I am wondering if anyone out there is having stomach

problems? I have taken LDN around 40 days and once in while since I have

started ldn I experience nausea. Thanks in advance for any response. JL

[low dose naltrexone] And then there were none...almost

One more post to give an update. RRMS here and I started taking LDN

on September 29th 2004. Day one, energy that I haven't felt in

years! And no more leg tremors as soon as I take it, every time!

Here it is 2 months later and I still have amazing energy, now with

another added benefit at 3mgs, no more bladder meds needed. I

stopped taking my bladder medication last week, just to see if there

was a difference and there is! Now it's as if I am still taking the

medicine. Also stopped taking my amitriptyline to help me stop

crying during TV commercials...LOL! I was crying for no reason

whatsoever! Game show? I cried. Comedies? I cried.

Commercials...and I am not talking those killer Hallmark ones, I am

talking folgers coffee for petes sake...I would cry! Well no more!!

No more crying at the drop of a hat and NO other medicines but LDN!

I am a relatively drug free woman, except for LDN. I can't wait to go

to my very skeptical neuro next month to spread the word on what LDN

can do! If it weren't for the info I have read here, I never would

have tried it. So to all of you who post here...I THANK YOU! And to

OLDMSPRO, CJ, my friend...THANK YOU for telling me about it to begin

with!

Joan

[Guest guest]

I had nausea nearly every morning until I switched fillers from Avicel to cornstarch...

RE: [low dose naltrexone] question?

This is Joanne I am wondering if anyone out there is having stomach problems? I have taken LDN around 40 days and once in while since I have started ldn I experience nausea. Thanks in advance for any response. JL

[Guest guest]

Les, any infection in your body will make your symptoms flair, but...... call your pharmacy and ask what filler was used. I have always found that you should trust your gut instinct.., you may be on to something and it's important they use the correct filler for you. Call now!

Kiki

PS Feel Better!

[Guest guest]

Hi ,

It sounds like you might be right. I would call them and tell them what you

are experiencing and how it tastes differently. Why would they change it?

Anyways this has happened before. In fact someone last year had stated that

a new pharmacist started and he added something to make it slow release,

which you don't want with LDN.

Good girl for thinking. Who are you getting your prescription filled with?

Aletha

[low dose naltrexone] question?

I have been on LDN since Aug 15,2005. I was having good results until

this last shippment. My pharmcy uses lactose for a filler. Or they

were. I have noticed that I have a feeling of tightness in my leggs,

fingers not wanting to move the way they should, slight pain in my left

forearm. I also noticed that this bottle doesn't taste the same. I mix

4.5 in a little bit of water at about 930pm.. and usually has a bitter

taste, this batch taste almost milky sweet. has anyone ever had this

problem. I orginally thought that the feelings where becasue I have a

bad cold/broncitits(sp) type thing going on and have read on this site

that LDN has a hard time working when that is going on. But this change

in taste is bothering me. Just thought I would ask before I call the

pharmacy and ask what they did.. and How can I really prove it?

Thanks everyone, your support on this site helps more than you know. I

wouldn't have even tried to get LDN if it wasn't for this site.

Although, I don't post often, I read all the time.

Les

[Guest guest]

,

I am taking Copaxone right now, and I am wondering if (when I start LDN) I

should not take Copaxone. I have RRMS and have been on Copaxone for 5 years

probably. I have not seen a deterioration but have not seen an improvement

during that time. Good Luck with your appt. Please let me know how it goes and

let me know what the Dr. says.

Thanks,

---- Shackley <cshackl1@...> wrote:

> Hello-

>

> Is anyone currently taking copaxone with LDN? I know the science indicates it

should not pose any problems.. but, just checking further.

>

> Also- is anyone with PPMS or SPMS on copaxone as a therapy? I began taking it

in Sept. 05, and honestly, seem to be a little worse? May or may not be

copaxone, just wondering if anyone else had a similar experience.

>

> I have a skd appt with Dr. Bihari next Thurs to begin LDN. I am very

hopeful!!

>

> Chris

[Guest guest]

Hi Chris. I'm PPMS, taking Cop w/LDN for the last 6 months. I've been taking Cop for 7 yrs, but in all honesty I question whether it was working in me. The 'comeback' from my neuro was always, "There's no telling how bad you'd be now if you hadn't started Cop when you did". I guess it's just a guessing game to see if the drug works in each patient - we're all that unique. There's no one course for MS that we'll all follow, and no drug has yet been proven to stop the MS from progressing, or we'd all be on it! The best they say it does is that the drug will "slow down" the disorder from worsening, and I know many people with MS who are stable on it. LDN is another story though, and several folks here who take it on its own claim miraculous recovery of strength they'd lost.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of ShackleySent: Thursday, January 26, 2006 11:00 AMlow dose naltrexone Subject: [low dose naltrexone] question?

Hello-

Is anyone currently taking copaxone with LDN? I know the science indicates it should not pose any problems.. but, just checking further.

Also- is anyone with PPMS or SPMS on copaxone as a therapy? I began taking it in Sept. 05, and honestly, seem to be a little worse? May or may not be copaxone, just wondering if anyone else had a similar experience.

I have a skd appt with Dr. Bihari next Thurs to begin LDN. I am very hopeful!!

Chris