flare

[Guest guest]

Hi Sandy,

Did you happen to fly on a plane on your trip to and/or from Utah?

Carol

[Guest guest]

Hi Robbin,

It sounds like you are taking your quest for healing well into your own

hands. Remember AP is a long, slow process. We call it two steps forward,

one step back. Eventually, the flares become less severe and come further

and further apart. I also noticed that the flare came after a viral

illness. That is not unusual. Any kind of physical challenge, like

additional illness, surgery, accident, childbirth can overload your systems

capacity to deal with your disease temporarily. Do whatever you can to

support your immune system. Look at diet also, eliminating junk to ease the

burden on your body. Make sure you drink enough water. Breathe, and see if

you can relax. I know fear is a big component when we face such health

challenges, but stress hampers the immune system. Know that AP has helped

many people and there is a good chance it will work for you, too. It takes

time.

Take care,

Ute

[Guest guest]

It has been my own personal experience that remission must be maintained by

meds. A few people have been able to get off meds for years at a time, but

most of us need to stay on at least a three day a week regime to keep the

bacteria at bay.

I was on 100 mg minocin twice a day everyday and finally reached

remission. I then was put on one minocin every mon-wed-fri to maintain that

remission. Obviously your bacteria was still hiding, lying low until they

could

reappear with a vengence. Just my opinion. Martha

[Guest guest]

rheumatic Flare

> Looking for advice. I was diagnosed with PM last

> December and have been on Zythromax 250 mgs three

> times per week then 2 times per week and actually got

> down to 1 time per week. By June I was in remission,

> my CPK and Sed rate both down to a normal range. Two

> weeks ago I had a virus and since then my PM symptoms

> have been re-appearing. I just called my doc and asked

> to have blood work drawn, CPK, Sed rate, disease panel

> and CBC. Should have the results with in two days. I

> have increased my fish oil, MSM, and Quercetin intake

> (just this week). I have also just increased my

> Zythromax back to 3 times per week (Just last week).

> First, is this normal to have a flare this soon after

> a remission and second any advice?

>

> Thanks in advance for your support and valuable

> advice.

>

> Robbin

>

Robin, reaching remission does not mean you've defeated the disease.

Simply put, there is a remnant of that organism that caused your disease

that remains in your body forever just waiting for an opportunistic event

(such as your recent viral infection) to rear it's ugly head again and cause

you a problem.

That's why it is SO important that you eat a healthy diet along with

appropriate supplements to keep the immune system as strong as possible and

practice regular detoxing procedures, to help the body fight off infections

and lessen your chances of a recurrence of the disease. The best diet -

especially for those of you on drugs - would be one that eliminates grain,

dairy and sugar. It is no secret that grains as stored today produce

fungus/mycotoxins. Many of you have been on antibiotics for a very long

time. Most antibiotics are made from fungus and fungus feeds on sugar. So

it's not just a matter of taking probiotics to replace the good bacteria the

antibiotics are killing off, but it is equally important to keep the fungus

under control.

Ethel

[Guest guest]

Hi :

Yes, it sounds like a flare to me. It is good you are taking your pain

meds. all the time. You might consider calling your dr., and tell what

is going on with you now. They might want to change your pain meds.,

etc. I always call my Rheumy if anything changes on my RA.

I sure hope you feel better soon, and try to rest when you can. That

does help.

Wishing you pain free days ahead.

Hugs,

Barbara

>

> Hi Everyone,

>

> Can this be a flare? I'm not familiar with what actually happens

during a flare. Here's what's going on.

>

> I have AS as well as other joint involvement. I've been able to adapt

to the level of pain that I'm in on a day to day basis, which is pretty

consistent at a a level of about 4 to 5. I don't take pain meds, just

the usual MTX and remicade.

>

> Friday evening while watching TV, I began to get severe pain in my

left hip, which put the pain level above 8 to 9 at least. I was really

suffering. I did take a pain pill at that point, but it only slightly

lowered my pain level. When I got up the next morning, both hips were

involved and I had a lot of difficulty moving around. Later that day, I

noticed that my knee was involved and then my hands which are always

hurting began to intensify in pain as well, then the neck and tail bone

went into play. I've had to keep taking the pain meds just to get thru

each day and night. My question is...does this sound like a flare, or do

you think it's something more and that I should call the doctor?

>

> Any help is greatly appreciated.

>

> Thanks and have a great day everyone.

>

> Les

>

[Guest guest]

---Hi Barbara,

Thanks for the help. I thought it is a flare, but this will be my first real

evidence of something like that since my diagnosis a couple years ago. I'm on

MTX and Remicade, and now in addition, the pain meds. I try not to take them

during regular times, but this pain has been so much more severe than the every

day pain, that I've had no choice but to take it. I have been doing a lot of

resting, and mostly because I just haven't felt well enough to do much else.

I'll call my rheumy. I didn't know that it's something they should be made

aware of.

Thanks again and I wish you pain free days ahead too.

Les

>

> Hi :

>

> Yes, it sounds like a flare to me. It is good you are taking your pain

> meds. all the time. You might consider calling your dr., and tell what

> is going on with you now. They might want to change your pain meds.,

> etc. I always call my Rheumy if anything changes on my RA.

>

> I sure hope you feel better soon, and try to rest when you can. That

> does help.

>

> Wishing you pain free days ahead.

>

> Hugs,

>

> Barbara

>

> >

> > Hi Everyone,

> >

> > Can this be a flare? I'm not familiar with what actually happens

> during a flare. Here's what's going on.

> >

> > I have AS as well as other joint involvement. I've been able to adapt

> to the level of pain that I'm in on a day to day basis, which is pretty

> consistent at a a level of about 4 to 5. I don't take pain meds, just

> the usual MTX and remicade.

> >

> > Friday evening while watching TV, I began to get severe pain in my

> left hip, which put the pain level above 8 to 9 at least. I was really

> suffering. I did take a pain pill at that point, but it only slightly

> lowered my pain level. When I got up the next morning, both hips were

> involved and I had a lot of difficulty moving around. Later that day, I

> noticed that my knee was involved and then my hands which are always

> hurting began to intensify in pain as well, then the neck and tail bone

> went into play. I've had to keep taking the pain meds just to get thru

> each day and night. My question is...does this sound like a flare, or do

> you think it's something more and that I should call the doctor?

> >

> > Any help is greatly appreciated.

> >

> > Thanks and have a great day everyone.

> >

> > Les

> >

>

[Guest guest]

Hi Les:

When flares are bad, they are very bad, and so debilitating. Plus, to

have pain and suffering each and every day is so wearing on us.

I hate to take my pain meds, but when I am in a bad flare, I have to to

get through each day and just try to live. Resting is the best, and the

more you do during your flares, will help you so much. I try to lie

down each and every afternoon myself. I had to retrain myself and pace

myself as my Rheumy said this is what I had to do. I use to go and go,

do and do, and then be in bed in outrageous pain and suffering for 3-4

days. I quickly learned to do what she told me to do. It does feel

good to do this each day for myself.

Wishing you pain free days ahead. Take care of yourself, and talk soon.

Hugs,

Barbara

> > >

> > > Hi Everyone,

> > >

> > > Can this be a flare? I'm not familiar with what actually happens

> > during a flare. Here's what's going on.

> > >

> > > I have AS as well as other joint involvement. I've been able to

adapt

> > to the level of pain that I'm in on a day to day basis, which is

pretty

> > consistent at a a level of about 4 to 5. I don't take pain meds,

just

> > the usual MTX and remicade.

> > >

> > > Friday evening while watching TV, I began to get severe pain in my

> > left hip, which put the pain level above 8 to 9 at least. I was

really

> > suffering. I did take a pain pill at that point, but it only

slightly

> > lowered my pain level. When I got up the next morning, both hips

were

> > involved and I had a lot of difficulty moving around. Later that

day, I

> > noticed that my knee was involved and then my hands which are always

> > hurting began to intensify in pain as well, then the neck and tail

bone

> > went into play. I've had to keep taking the pain meds just to get

thru

> > each day and night. My question is...does this sound like a flare,

or do

> > you think it's something more and that I should call the doctor?

> > >

> > > Any help is greatly appreciated.

> > >

> > > Thanks and have a great day everyone.

> > >

> > > Les

> > >

> >

>

[Guest guest]

When the flare is bad enough (for me) I go on the pain meds and stay on it for

the whole day, so I lose the day pretty much but it's better than suffering

constantly. But you're right, I get tired of something constantly being wrong,

sore here, pain there...what a life!

Stan,

Seattle, Sunny!

[ ] Re: flare

Hi Les:

When flares are bad, they are very bad, and so debilitating. Plus, to

have pain and suffering each and every day is so wearing on us.

I hate to take my pain meds, but when I am in a bad flare, I have to to

get through each day and just try to live. Resting is the best, and the

more you do during your flares, will help you so much. I try to lie

down each and every afternoon myself. I had to retrain myself and pace

myself as my Rheumy said this is what I had to do. I use to go and go,

do and do, and then be in bed in outrageous pain and suffering for 3-4

days. I quickly learned to do what she told me to do. It does feel

good to do this each day for myself.

Wishing you pain free days ahead. Take care of yourself, and talk soon.

Hugs,

Barbara

> > >

> > > Hi Everyone,

> > >

> > > Can this be a flare? I'm not familiar with what actually happens

> > during a flare. Here's what's going on.

> > >

> > > I have AS as well as other joint involvement. I've been able to

adapt

> > to the level of pain that I'm in on a day to day basis, which is

pretty

> > consistent at a a level of about 4 to 5. I don't take pain meds,

just

> > the usual MTX and remicade.

> > >

> > > Friday evening while watching TV, I began to get severe pain in my

> > left hip, which put the pain level above 8 to 9 at least. I was

really

> > suffering. I did take a pain pill at that point, but it only

slightly

> > lowered my pain level. When I got up the next morning, both hips

were

> > involved and I had a lot of difficulty moving around. Later that

day, I

> > noticed that my knee was involved and then my hands which are always

> > hurting began to intensify in pain as well, then the neck and tail

bone

> > went into play. I've had to keep taking the pain meds just to get

thru

> > each day and night. My question is...does this sound like a flare,

or do

> > you think it's something more and that I should call the doctor?

> > >

> > > Any help is greatly appreciated.

> > >

> > > Thanks and have a great day everyone.

> > >

> > > Les

> > >

> >

>

[Guest guest]

Hello all! Its been awhile, I know... I am having a hard time remaining

positive during this most recent flare. All I want to do is cry and curl up

into a little ball.. My feet, ankles, wrists, hands fingers, and toes are all

swollen. the joint pain is terrible and there doesn't seem to be anything that

can be done. My doc recently gave me anti-inflammation shots in my ankles,

wrists and knuckle joints with little success... I went back for a follow up

and he once again gave me four additional shots in my knuckle joints... The

shots make the pain worse for the first 3-4 days (as if that's possible)and then

the pain is only relieved for only a short period (ie couple days to a week..)

He says that my rituxin infusion is wearing off and that I can't get more until

June! What?! That means I will be swelling and in pain for another month and a

half... I can't take this anymore...

I think I've hit a blank spot and I just can't seem to find my normal optimistic

attitude. I work full time and luckily the office I work in is very

understanding... But for how long? I'm sick of myself, I can only imagine how

they feel...

Thanks for listening

Bonnie

[Guest guest]

K, If you and your Rhuemy can't see things eye to eye, or at least feel as if

he/she is listening to you, then you should try to locate a new Rhuemy... Do

you feel the humira has helped at all?

I try to avoid the prednisone because the last time I had more then 10 mlg I

gained about 45 lbs in less then one year... Ouch! I'm now starting to loose

that weight (12 lbs lost so far)and every time my Rhuem talks about increasing

my dose, I remind him that I've finally started loosing the weight and my

emotional impression of myself can also be harmful. I eat healthy and still

gain weight every time he increases my dose...

> >New member: Flares suck! Mine seem to be getteng longer and londer.

> I am on Humira, Celebrex and Onycodone,all pain or Biologicals (suppose to

slow the progression). Not happening. I told my Doctor that he could give me all

the pain killers he wants but they do not address the inflamation and swelling

of joints. I take 10mg. of Predisone which treats the inflamationm but I need it

upped to 15mg. He said if I do that it will increase my blood sugar

(pre-diabeties)

> and I will have skin and bone problems. My bones are excellent. I told Him

living in pain everyday also causes problems. It has been at least 6 yrs. now

and the pain issue is still not resolved. What is the answer?

> Thank you, K in hurt.

>

> > Tawny and ,

> > Thank you both for the kind words... I'm really struggling this time

around.. My Rheum gave me Tylenol 3 for the pain (tramadol didn't work at

all), it just doesn't seem to help enough... not to mention the groggy feeling

that comes with it. You constantly feel that your only half here and that's the

half that's in pain... I'm also taking medrol twice daily, methelytrexate (20

milagrams weekly), planqunile and folic acid.

> > He sent me for more blood work, and if it comes back alright, then he said

he would try Remicade the next time around, but he says he doesn't really want

to go that route. I am pushing for more options and different meds but I also

need to believe that he knows what is best and I'm trying to trust him..

> > Apparently, where I've been diagnosed with Undifferentiated Connective

Tissue Disease, I have a lot of Lupus type issues along with RA... and

apparently Remicade and Lupus shouldn't mix... I have however been having more

RA type symptoms over the past 3-4 months, and the doctor thinks I might be

changing diagnosis... I've already tried Enbrel with only a little success, the

Rituxin (when working) was really great, I really began to become " normal "

again, but now that its stopped working, I'm wondering if the three months of

feeling better is worth the three months of feeling crappy... I'm thinking not!

> > This crap is way too confusing... especially when you add pain, and

luppiness due to all the meds... If only I could find my brain in all of

this... I can still remember being smart once (they were the days)

> > P.S Tawny... I'm pretty sure we've chatted on here before, but I'm not the

Bonnie your referring too... I live in Cape May County, NJ...

> > Thanks again Ladies for your support... My hubby tries, but he really isn't

capable of truly understanding.

> >

>

[Guest guest]

Yes Beth.  It is absolutely ward battle.  Mycos have a tendency to congregate

around a certain joint and known to move to other joints. Because you have been

successful with getting the mycos weakened, you felt better.  Now the mycos

from other areas congregate again to aggravate yet another joint.  This will go

on until your entire system is free of mycos. Also know that these mycos are

slow in dying and as they die off, they emit a toxin.  They do not die off

quietly, they fight back ferociously. This toxin can make us very sick for a

time.  It is part of the getting better process and it is also a sign that the

micos are being attacked and that your medication is working.  It doesn't make

sense to accept this time with joy, however, at least accept it as part of the

healing and give yourself extra rest, extra care and see if your doctor can give

you pallative measures.  I took Benicar to help with those times and it worked

for me. 

Eventually you will see the light at the end of the tunnel.  These herxheimer

effects, as they are called are temporary and will get easier and easier as time

goes on.  Still, just to make sure, let your doctor know what is going on and

make sure he understands the herxheimer effect and how to deal with it

properly.  Whatever you do, do not go back to taking toxic meds.  Sleep this

off as much as you can and keep with a healthy regimen.  Explain to all around

you, that at this time, you will not be doing as much as you have been.  It is

part of the healing process.  Take care, Love yourself immensely!  You deserve

it!  The best to you,  Dolores 

From: kbf23 <kbf23@...>

Subject: rheumatic flare

rheumatic

Date: Thursday, June 10, 2010, 4:44 PM

 

I've been doing SO well the last 5-6 months. Some days I didn't even remember I

had RA! My b/w that was done two months ago showed that my SED rate had dropped

to normal and CR-protein was almost in the normal range.

However, the last couple of weeks and especially this last week, I've been

flaring really bad. My knees have swollen back up, new joints are sore, etc.

I realize that flares are to be expected during this treatment, but does this

sound normal to go so far backwards? Also, what can I do to help get out of this

flare?

Thanks everybody! Hope y'all are doing well!

Beth

[Guest guest]

I'd recommend sweating; either through a sauna (I just go up in my attic in

the summer; ten minutes later I'm soaked LOL) or soak in an Epsom

salt/peroxide bath. Lots of fresh pure water too. Hang in there, El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of mike rosner

Sent: Thursday, June 10, 2010 5:23 PM

rheumatic

Subject: Re: rheumatic flare

Yes Beth. It is absolutely ward battle. Mycos have a tendency to

congregate around a certain joint and known to move to other joints. Because

you have been successful with getting the mycos weakened, you felt better.

Now the mycos from other areas congregate again to aggravate yet another

joint. This will go on until your entire system is free of mycos. Also know

that these mycos are slow in dying and as they die off, they emit a toxin.

They do not die off quietly, they fight back ferociously. This toxin can

make us very sick for a time. It is part of the getting better process and

it is also a sign that the micos are being attacked and that your medication

is working. It doesn't make sense to accept this time with joy, however, at

least accept it as part of the healing and give yourself extra rest, extra

care and see if your doctor can give you pallative measures. I took Benicar

to help with those times and it worked for me.

Eventually you will see the light at the end of the tunnel. These

herxheimer effects, as they are called are temporary and will get easier and

easier as time goes on. Still, just to make sure, let your doctor know what

is going on and make sure he understands the herxheimer effect and how to

deal with it properly. Whatever you do, do not go back to taking toxic

meds. Sleep this off as much as you can and keep with a healthy regimen.

Explain to all around you, that at this time, you will not be doing as much

as you have been. It is part of the healing process. Take care, Love

yourself immensely! You deserve it! The best to you, Dolores

From: kbf23 <kbf23@... <mailto:kbf23%40> >

Subject: rheumatic flare

rheumatic <mailto:rheumatic%40>

Date: Thursday, June 10, 2010, 4:44 PM

I've been doing SO well the last 5-6 months. Some days I didn't even

remember I had RA! My b/w that was done two months ago showed that my SED

rate had dropped to normal and CR-protein was almost in the normal range.

However, the last couple of weeks and especially this last week, I've been

flaring really bad. My knees have swollen back up, new joints are sore, etc.

I realize that flares are to be expected during this treatment, but does

this sound normal to go so far backwards? Also, what can I do to help get

out of this flare?

Thanks everybody! Hope y'all are doing well!

Beth

[Guest guest]

Antibiotics are everyday.  I had been on MWF with little to no progress for

almost a year before we went to daily.  That's when I started seeing

improvement.  I have liver enzymes checked every three months.  As of two months

ago, liver enzymes were fine.

Also, I do take B vitamins, just not as regularly as I should.  Yes, I have had

my vitamin D levels checked and they are low.

What is vitamin A for?

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic flare

rheumatic

Date: Friday, June 11, 2010, 1:05 PM

Hi Beth,

are you on any enzymes that fight inflammation?

what have you been taking in terms of antibiotics and supplements?

Ana

________________________________

From: kbf23 <kbf23@...>

rheumatic

Sent: Thu, June 10, 2010 1:44:07 PM

Subject: rheumatic flare

 

I've been doing SO well the last 5-6 months. Some days I didn't even remember I

had RA! My b/w that was done two months ago showed that my SED rate had dropped

to normal and CR-protein was almost in the normal range.

However, the last couple of weeks and especially this last week, I've been

flaring really bad. My knees have swollen back up, new joints are sore, etc.

I realize that flares are to be expected during this treatment, but does this

sound normal to go so far backwards? Also, what can I do to help get out of this

flare?

Thanks everybody! Hope y'all are doing well!

Beth

     

[Guest guest]

vit a is for inflammation, specifically for the eye, but has its role to play in

the general healthy nutrition and supplementation synergistic with all the

others.

also, when a group of abx are used for a long time, bacteria not affected by

the abx in use multiply. It's good to run it by your doc and ask him/her to

give you a short course of antibiotics that cover the rest of the spectrum. 

________________________________

From: Beth Fletcher <kbf23@...>

rheumatic

Sent: Fri, June 11, 2010 12:09:53 PM

Subject: Re: rheumatic flare

 

Antibiotics are everyday.  I had been on MWF with little to no progress for

almost a year before we went to daily.  That's when I started seeing

improvement.  I have liver enzymes checked every three months.  As of two

months ago, liver enzymes were fine.

Also, I do take B vitamins, just not as regularly as I should.  Yes, I have had

my vitamin D levels checked and they are low.

What is vitamin A for?

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic flare

rheumatic

Date: Friday, June 11, 2010, 1:05 PM

Hi Beth,

are you on any enzymes that fight inflammation?

what have you been taking in terms of antibiotics and supplements?

Ana

________________________________

From: kbf23 <kbf23@...>

rheumatic

Sent: Thu, June 10, 2010 1:44:07 PM

Subject: rheumatic flare

 

I've been doing SO well the last 5-6 months. Some days I didn't even remember I

had RA! My b/w that was done two months ago showed that my SED rate had dropped

to normal and CR-protein was almost in the normal range.

However, the last couple of weeks and especially this last week, I've been

flaring really bad. My knees have swollen back up, new joints are sore, etc.

I realize that flares are to be expected during this treatment, but does this

sound normal to go so far backwards? Also, what can I do to help get out of this

flare?

Thanks everybody! Hope y'all are doing well!

Beth

     

[Guest guest]

Hi,

According to many others I know who have aunto-immune conditions, you are in

very good hands with Dr. Sentef. After all he cured himself of RA using

antibiotic therapy.

He also, from time to time, does live chats with www.rhematicsupport.net

God Bless,

Carol_DM

[Guest guest]

Hi Carol & Bob. This is Dolores and I have a question. You know I have taken

antibiotics since Jan,2006.  I was first diagnosed with Scleroderma in the

fall of 2005 after two years of going from doctor to doctor with no firm

diagnosis.  By then I had lost 40lbs and was bedridden.  Then on the computer,

I learned about the antibiotic protocol and made my appt. with Dr. T. in

Boston.  I waited out the time until my appointment reading the

recommended books by Scammell and Brown.  In it, I believe I read that the

immune cells do not attack other healthy immune cells, but rather are attacking

the cells that have been taken over by the mycos.  I think Dr. Brown said that

the body recognizes the imposter cells vs. the healthy cells.  Since then I

have refused to call these diseases autoimmune.  I prefer to say that they are

diseases that have attacked my immune system and that the body is too smart to

attack itself.  Am I wrong in my assumption or

is (autoimmune an actual function.)  I noticed you used the term autoimmune

and I squirmed when I read it.  Then I got to thinking maybe my misconception

is wrong and if there is something I don't know about autoimmunity, I would like

to find out.  If you can explain or point me to the resources, I would like to

clear this up in my mind.  Thank you for so much knowledge imparted in the

past.  You know I am now in complete remission and so thankful to you folks,

the roadback, Dr. Brown, & Henry Scammell and most of all to Lynne G who

personally answered my original post on the Scleroderma Foundation board

when I was desperate for answers and told that I was dying.  My best to all of

you , Dolores 

From: Bob & Carol Zarn <bczarn@...>

Subject: rheumatic Re: flare

rheumatic

Date: Saturday, June 12, 2010, 9:59 AM

 

Hi,

According to many others I know who have aunto-immune conditions, you are in

very good hands with Dr. Sentef. After all he cured himself of RA using

antibiotic therapy.

He also, from time to time, does live chats with www.rhematicsupport.net

God Bless,

Carol_DM

[Guest guest]

yes, zithromax is good and Sentef knows how to treat his own kind of illness

well. if your deformities match his, you are on your road to recovery.

rheumatic

From: kbf23@...

Date: Fri, 11 Jun 2010 17:37:56 -0700

Subject: Re: rheumatic flare

Thank you so much for all of your help. I see Dr. Sentef in Chattanooga and he

rx's Zithromax for 7 days once a month. I suppose that is for what you're

talking about.

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic flare

rheumatic

Date: Friday, June 11, 2010, 1:05 PM

Hi Beth,

are you on any enzymes that fight inflammation?

what have you been taking in terms of antibiotics and supplements?

Ana

________________________________

From: kbf23 <kbf23@...>

rheumatic

Sent: Thu, June 10, 2010 1:44:07 PM

Subject: rheumatic flare

I've been doing SO well the last 5-6 months. Some days I didn't even remember I

had RA! My b/w that was done two months ago showed that my SED rate had dropped

to normal and CR-protein was almost in the normal range.

However, the last couple of weeks and especially this last week, I've been

flaring really bad. My knees have swollen back up, new joints are sore, etc.

I realize that flares are to be expected during this treatment, but does this

sound normal to go so far backwards? Also, what can I do to help get out of this

flare?

Thanks everybody! Hope y'all are doing well!

Beth

[Guest guest]

HI Delores...so glad that the book has helped you....I have a book case here in

the den full of different health and supplement books, it is sooo important that

we old timers on the BB help the newly diagnosed.....I will never forget the

lady that helped me....she called on her own dime, recommended

physicians...among them, Dr. Whitman, who to this day is my NUMBER 1 rheumy....I

am still in contact with several of the long time BB members...

So glad you are doing well...and able to help others...it is a scary time when

first diagnosed and it is sooo helpful to have quick responses and info re the

issues we all face at one time or another...Good to hear from you....Hugs,

Debbie

rheumatic Re: flare

rheumatic

Date: Sunday, June 13, 2010, 9:35 AM

Dolores,

Every time I read a post from you I am so thrilled that you have got your life

back.

I use the term auto-immune disease for lack of another term as I am not sure

what to call these conditions,. I, like you, do not believe that the body

attacks itself but do not know what else to refer to these diseases.

the term " auto-immune " is understood by most as to what is being referenced.

hope that helps,

carol_DM

[Guest guest]

Interesting .. I too don't believe that our body actually starts attacking good

cells. When someone asks me I choose to say I have a comprimised immune system;

but even more interesting is that back in the beginning of my journey 2 of the

rheumies I saw said my immune system was actually depleted which is why this

bacteria had a chance to take hold!

Maz

>

> Dolores,

>

> Every time I read a post from you I am so thrilled that you have got your life

back.

>

> I use the term auto-immune disease for lack of another term as I am not sure

what to call these conditions,. I, like you, do not believe that the body

attacks itself but do not know what else to refer to these diseases.

>

> the term " auto-immune " is understood by most as to what is being referenced.

>

> hope that helps,

>

> carol_DM

>

>

[Guest guest]

This is all very interesting.  Even the Rheumies haven't got a clear cut

picture of the Immune system and whether it is depleted, compromised, weakened,

or what state it is in. etc. So, if they don't know, who is going to know?  Dr.

Brown didn't believe that the body attacks itself, either.  He felt that the

bacteria and or the viruses attached to the outer part of our immune cell walls

emit the toxin/antigen and that is what the immune cells were attacking by

releasing antibodies.  Much like an allergic response.  The only real thing we

know is that treating with a tetracycline based antibiotic such as Minocin, will

weaken the bacteria/virus eventually and we can go into remission.  If it were

truly an autoimmune response, there would be no way that we could achieve

remission because the mycoplasma would still be replicating in our systems. 

And we know that they use our protein to do this with.  Dr. Brown calls the

mycoplasmas a parasite living

within our immune cells.  The mycoplasma can get into our immune cells easily

because it does not have its' own cell wall.  They can morph into L-shapes

which makes them easier to slip in and then they move around in our bodies

through fluids and get into our joints, muscles and even lungs, hearts and all

organs.going from place to place causing destruction. A truly autoimmune state

would not respond in any way by taking an antibiotic.  That is why the Rheumy's

do not want to order antibiotics, because they truly hold on to the belief that

when we are sick it is because of an autoimmune response.  I think that God has

given us a very intelligent body and it knows when it has been attacked and it

knows when and how to fight back.  Our bodies were built to fight back, clean

up the debris and heal itself.  Mine is in the healing process and I will

believe the above until someone can prove to me that the body attacks itself. 

What more proof do we

need than to know that when we get a common cold from a virus or an infection

from a bacteria, we know we must rest, take fluids, sip soup which is helping

the immune system fight back and then within a week or so, we are up and feeling

better. Even if we didn't rest and do all that, the virus or bacteria would be

gone soon anyway. Some say the cold has run its' course.  PoppycockI  The

immune system took care of the problem and then the body healed itself.  I know

it is not as simple as I just put it.  We can go into the fact that the body

also has T-cells which are called helper cells that help the immune cells do

its' work,  But that would be getting too complicated to follow at this

point.  I have been told that people with AIDS have a depleted immune system.

That means a virus has wiped it out.  They call that a Th 2 disease. People

like us with Rheumatic disease, have a Th 1 disease.  This means our immune

systems are

compromised.  Meaning we still have some fight left, but it is weakened and

needs help.  Well, sorry for going on.  I'm sure most of you are snoring right

now out of pure boredom.  I find the subject fascinating.  We definitely need

more research into how this body of ours performs under onslaught or under

stress.  So, the question remains.  Do we have an autoimmune disorder or do we

have a disorder that has attacked our immune system.  I believe the latter, but

then again, which came first the chiken or the egg?  G'night all~~~pleasant

dreams.  Dolores   

From: Maz <mazm_mm@...>

Subject: rheumatic Re: flare

rheumatic

Date: Wednesday, June 16, 2010, 11:04 PM

 

Interesting .. I too don't believe that our body actually starts attacking good

cells. When someone asks me I choose to say I have a comprimised immune system;

but even more interesting is that back in the beginning of my journey 2 of the

rheumies I saw said my immune system was actually depleted which is why this

bacteria had a chance to take hold!

Maz

>

> Dolores,

>

> Every time I read a post from you I am so thrilled that you have got your life

back.

>

> I use the term auto-immune disease for lack of another term as I am not sure

what to call these conditions,. I, like you, do not believe that the body

attacks itself but do not know what else to refer to these diseases.

>

> the term " auto-immune " is understood by most as to what is being referenced.

>

> hope that helps,

>

> carol_DM

>

>

[Guest guest]

Must admit it's nice talking to someone who thinks like I do - I don't find many

people who will even listen.  When you say " People like us with Rheumatic

disease, have a Th 1 disease.  This means our immune systems are

compromised.  Meaning we still have some fight left, but it is weakened and

needs help " is exactly what I believe & exactly what the doctors in the hospital

said to me back at the beginning of my own journey.  After all, it's just not

possible for someone to go from a perfectly health human being to being that ill

in that short a time without something happening !!  I believe that was the

severe staph infection I had, I think my own immune system was too busy trying

to kill off the staph infection it didn't have time to tackle anything else &

became comprimised in the process.

Nice to see we are on the same page!!!

Night night,

Maz

 

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Thu, 17 June, 2010 2:09:02 PM

Subject: Re: rheumatic Re: flare

 

This is all very interesting.  Even the Rheumies haven't got a clear cut

picture of the Immune system and whether it is depleted, compromised, weakened,

or what state it is in. etc. So, if they don't know, who is going to know?  Dr.

Brown didn't believe that the body attacks itself, either.  He felt that the

bacteria and or the viruses attached to the outer part of our immune cell walls

emit the toxin/antigen and that is what the immune cells were attacking by

releasing antibodies.  Much like an allergic response.  The only real thing we

know is that treating with a tetracycline based antibiotic such as Minocin, will

weaken the bacteria/virus eventually and we can go into remission.  If it were

truly an autoimmune response, there would be no way that we could achieve

remission because the mycoplasma would still be replicating in our systems. 

And we know that they use our protein to do this with.  Dr. Brown calls the

mycoplasmas a parasite living

within our immune cells.  The mycoplasma can get into our immune cells easily

because it does not have its' own cell wall.  They can morph into L-shapes

which makes them easier to slip in and then they move around in our bodies

through fluids and get into our joints, muscles and even lungs, hearts and all

organs.going from place to place causing destruction. A truly autoimmune state

would not respond in any way by taking an antibiotic.  That is why the Rheumy's

do not want to order antibiotics, because they truly hold on to the belief that

when we are sick it is because of an autoimmune response.  I think that God has

given us a very intelligent body and it knows when it has been attacked and it

knows when and how to fight back.  Our bodies were built to fight back, clean

up the debris and heal itself.  Mine is in the healing process and I will

believe the above until someone can prove to me that the body attacks itself. 

What more proof do we

need than to know that when we get a common cold from a virus or an infection

from a bacteria, we know we must rest, take fluids, sip soup which is helping

the immune system fight back and then within a week or so, we are up and feeling

better. Even if we didn't rest and do all that, the virus or bacteria would be

gone soon anyway. Some say the cold has run its' course.  PoppycockI  The

immune system took care of the problem and then the body healed itself.  I know

it is not as simple as I just put it.  We can go into the fact that the body

also has T-cells which are called helper cells that help the immune cells do

its' work,  But that would be getting too complicated to follow at this

point.  I have been told that people with AIDS have a depleted immune system.

That means a virus has wiped it out.  They call that a Th 2 disease. People

like us with Rheumatic disease, have a Th 1 disease.  This means our immune

systems are

compromised.  Meaning we still have some fight left, but it is weakened and

needs help.  Well, sorry for going on.  I'm sure most of you are snoring right

now out of pure boredom.  I find the subject fascinating.  We definitely need

more research into how this body of ours performs under onslaught or under

stress.  So, the question remains.  Do we have an autoimmune disorder or do we

have a disorder that has attacked our immune system.  I believe the latter, but

then again, which came first the chiken or the egg?  G'night all~~~pleasant

dreams.  Dolores   

From: Maz <mazm_mm@...>

Subject: rheumatic Re: flare

rheumatic

Date: Wednesday, June 16, 2010, 11:04 PM

 

Interesting .. I too don't believe that our body actually starts attacking good

cells. When someone asks me I choose to say I have a comprimised immune system;

but even more interesting is that back in the beginning of my journey 2 of the

rheumies I saw said my immune system was actually depleted which is why this

bacteria had a chance to take hold!

Maz

>

> Dolores,

>

> Every time I read a post from you I am so thrilled that you have got your life

back.

>

> I use the term auto-immune disease for lack of another term as I am not sure

what to call these conditions,. I, like you, do not believe that the body

attacks itself but do not know what else to refer to these diseases.

>

> the term " auto-immune " is understood by most as to what is being referenced.

>

> hope that helps,

>

> carol_DM

>

>

[Guest guest]

I agree!  It is the only thought process that makes any sense to me.  I think

Dr. Brown had a good point when he says the body acts like an allergic response

to the antigen.  I remember when I was being treated for asthmatic attacks,

which I developed quite suddenly, they kept giving me prednisone and I think

that further weakened my immune system.  That is why I cringe when someone

posts that they are on Prednisone.  I am so against dampening down the immune

system.  I just planted my own garden, so I can eat healthier and maybe help my

gut to get into a healthier state. That is the area of my last symptom and the

hardest to heal.  Now if Mike and my mom would give up the junk foods, maybe I

wouldn't be so tempted either. It is so difficult to gnaw on a raw carrot when

they are chomping down on chocolate cake. It's not fair!  They are fine and I

throw up the chocolate cake.  My body certainly does not lie to me.  Well, Mom

is sound asleep

and Mike and I are on our computers enjoying the quiet, peaceful night.  The

ocean is about 300 feet from my house and we are about 350 ft.up on a

hill overlooking the sea.  The weather is always between 75 degrees F. and 85

degrees F year round.  I feel like I moved to Paradise.  I have traveled a lot

in my life, but have never been below the equator.  The closest to Autralia I

ever got to was living in Hawaii for 4 years in the 1980's.  Everyone I knew

there would fly to new Zealand and Australia often, but we never went.  wished

I had taken the opportunity when I had the chance.  I was working as a nurse in

ICU &  CCU at Straub Hospital near Waikiki when I came down with EBV & CMV. 

That was the beginning of my downward spiraling health problems.  Up until

then, I was extremely healthy. Now my daughter is an R.N. She graduated in May

2009 and is putting in her required amount of experience in the ICU unit of the

hospital in

St.Croix before she sets out to be a traveling nurse.  My grandson has

also taken up nursing.  He is in a 3 yrs. BSN program.  Looks like we are

becoming a family of nurses.  I am so proud of them.  Nursing is so

rewarding. 

Nice chatting with you.  Dolores 

From: Maz <mazm_mm@...>

Subject: rheumatic Re: flare

rheumatic

Date: Wednesday, June 16, 2010, 11:04 PM

 

Interesting .. I too don't believe that our body actually starts attacking good

cells. When someone asks me I choose to say I have a comprimised immune system;

but even more interesting is that back in the beginning of my journey 2 of the

rheumies I saw said my immune system was actually depleted which is why this

bacteria had a chance to take hold!

Maz

>

> Dolores,

>

> Every time I read a post from you I am so thrilled that you have got your life

back.

>

> I use the term auto-immune disease for lack of another term as I am not sure

what to call these conditions,. I, like you, do not believe that the body

attacks itself but do not know what else to refer to these diseases.

>

> the term " auto-immune " is understood by most as to what is being referenced.

>

> hope that helps,

>

> carol_DM

>

>

[Guest guest]

Yes, I guess what I find really amazing is that of the 3 rheumies I saw in the

beginning 2 of them actually said 'your immune system isn't strong enough to

deal with this' !!  that's a statement & a half isn't it.

I am afraid I would have to be on deaths door before I agreed to take

cortizone.  It creates some major problems down the track.  But interestingly

my AP Doc has some of her patients on 3-5mg of it just until she can stabilise

them (usually not more than 4 or 5 mths) & maintains it's for such a short time

really there shouldn't be a problem. 

We have our own veggie garden too so I know it is pesticide free as well as a

few chickens & ducks.  There is nothing like going out & picking your vegies

for the night from your own garden!  An interesting thing I read the other day

was from our research doctors here who say there is no doubt that puberty is

coming earlier these days & because of that there are a lot of

illnesses/diseases now showing up in children & teenagers that weren't there

years ago; ie, they maintain that JRA & similar are on the increase -- the

theory is that the problem is coming from the foods we eat, because most of

our foods these days contain growth hormones; there is a huge research program

about to start on that theory; it will be interesting to see what comes of it.

Where you live sounds to me like 'paradise', clearly a lovely spot of the

world. 

It's a lovely feeling being proud of your children & how interesting they have

entered the nursing world following in your footsteps.  My daughter is a

psychologist working with the mentally disabled & criminal element

... Personally I don't know how they do it but take my hat off to them !!

   

Cheers,

Maz    

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Thu, 17 June, 2010 3:26:13 PM

Subject: Re: rheumatic Re: flare

 

I agree!  It is the only thought process that makes any sense to me.  I think

Dr. Brown had a good point when he says the body acts like an allergic response

to the antigen.  I remember when I was being treated for asthmatic attacks,

which I developed quite suddenly, they kept giving me prednisone and I think

that further weakened my immune system.  That is why I cringe when someone

posts that they are on Prednisone.  I am so against dampening down the immune

system.  I just planted my own garden, so I can eat healthier and maybe help my

gut to get into a healthier state. That is the area of my last symptom and the

hardest to heal.  Now if Mike and my mom would give up the junk foods, maybe I

wouldn't be so tempted either. It is so difficult to gnaw on a raw carrot when

they are chomping down on chocolate cake. It's not fair!  They are fine and I

throw up the chocolate cake.  My body certainly does not lie to me.  Well, Mom

is sound asleep

and Mike and I are on our computers enjoying the quiet, peaceful night.  The

ocean is about 300 feet from my house and we are about 350 ft.up on a

hill overlooking the sea.  The weather is always between 75 degrees F. and 85

degrees F year round.  I feel like I moved to Paradise.  I have traveled a lot

in my life, but have never been below the equator.  The closest to Autralia I

ever got to was living in Hawaii for 4 years in the 1980's.  Everyone I knew

there would fly to new Zealand and Australia often, but we never went.  wished

I had taken the opportunity when I had the chance.  I was working as a nurse in

ICU &  CCU at Straub Hospital near Waikiki when I came down with EBV & CMV. 

That was the beginning of my downward spiraling health problems.  Up until

then, I was extremely healthy. Now my daughter is an R.N. She graduated in May

2009 and is putting in her required amount of experience in the ICU unit of the

hospital in

St.Croix before she sets out to be a traveling nurse.  My grandson has

also taken up nursing.  He is in a 3 yrs. BSN program.  Looks like we are

becoming a family of nurses.  I am so proud of them.  Nursing is so

rewarding. 

Nice chatting with you.  Dolores 

From: Maz <mazm_mm@...>

Subject: rheumatic Re: flare

rheumatic

Date: Wednesday, June 16, 2010, 11:04 PM

 

Interesting .. I too don't believe that our body actually starts attacking good

cells. When someone asks me I choose to say I have a comprimised immune system;

but even more interesting is that back in the beginning of my journey 2 of the

rheumies I saw said my immune system was actually depleted which is why this

bacteria had a chance to take hold!

Maz

>

> Dolores,

>

> Every time I read a post from you I am so thrilled that you have got your life

back.

>

> I use the term auto-immune disease for lack of another term as I am not sure

what to call these conditions,. I, like you, do not believe that the body

attacks itself but do not know what else to refer to these diseases.

>

> the term " auto-immune " is understood by most as to what is being referenced.

>

> hope that helps,

>

> carol_DM

>

>