Re: antibiotic treatment for RA/

[Guest guest]

Wow, - I'm no doctor, but it sounds like someone has totally

missed the boat with your diagnosis. The RA meds shouldn't make you

feel worse and if you went through Hurricane Katrina, its a wonder

there aren't more people with the same symptoms (maybe there are).

Where did you live during the Hurricane? Louisiana, Mississippi,etc.?

Were you one of the ones crammed in one of the shelters? Or in a FEMA

trailer? Have you mentioned this timing to your doctor?

Goodness - my mind is just a whirling!! Please keep us posted. I hope

they can figure out what is going on and you feel better soon.

Doreen

>

> ,

>

> I think I am going to beg him to let me try it. What do I have to

> lose. It just doesn't make sense that immune suppressants make me

> worse. Makes me wonder if something else is going on unlike the

> normal RA/MCTD stuff. I am thoroughly convinced that I picked up

> something from being in hurricane Katrina. Everything started

> about a month after all that.

>

>

[Guest guest]

I was actually in Mississippi. I was fortunate to get airvac'd out

and then live in a hotel in San . Long story but I faired a

lot better than most. It really is all a long story but ended up with

this 6 weeks after it all.

> >

> > ,

> >

> > I think I am going to beg him to let me try it. What do I have to

> > lose. It just doesn't make sense that immune suppressants make me

> > worse. Makes me wonder if something else is going on unlike the

> > normal RA/MCTD stuff. I am thoroughly convinced that I picked

up

> > something from being in hurricane Katrina. Everything started

> > about a month after all that.

> >

> >

>

[Guest guest]

Hi

The antibiotic therapy has been used for heaps of things - just

different methods, from heart disease (reducing calcification - or

maintaining it's levels) to Gulf War Syndrome.

It's definately worth a try. I stopped Salazopyrin well before I was

supposed to recently (I just started Enbrel) because I felt it was

making me worse not better. I stopped the Arava after the 3 month

minumum to try the next therapy under our Pharmaceutical benefits

scheme because it did nothing for my RA and I am still in child bearing

age so wanted it gone ASAP from my system. I'm wondering if it's just

my system trying to cope with all the extra chemicals and when they're

not working, it does nothing but hamper the bodies natural ability to

cope / extract it through the system? In my early RA days I swam 2kms

and rode my bike a lot as well as other team sports. These days i'm

waiting on heart surgery so my sport is to a bare minimum - i'm sure

that doesn't help my body getting rid of these additional toxins in

additon to the inorganic chemicals the inflammatory process provides (I

sure know my " depression " from them is a lot worse).

Because you're in the US really investigate getting a great Antibiotic

Protocol Doctor on your side. I know it's a registered DMARD now but

the way it was used to treat RA and other diseases (with amazing

results over a I think 50-60 year period) is more complex than just

popping some tetracycline antibiotic because of it's damaging cytokines

properties. I wished we had these resources here in Australia. They

are personalised regimes and for many people they worked. They just

might work for you.

Also investigate getting some good PCR testing over there if you're

able. It's only relatively new, but exists there in the states are

higher levels (some of ours is flown over for testing) but can show up

tinnier bacterium than we were previously able to know was present in

our systems.

Best of luck and I always say with these things - listen to your

instincts, doctors are still only human with limited resources.

>

> I was actually in Mississippi. I was fortunate to get airvac'd out

> and then live in a hotel in San . Long story but I faired a

> lot better than most. It really is all a long story but ended up with

> this 6 weeks after it all.

>

>

[Guest guest]

What is PCR testing? Never heard of that. Would like to ask the doc

aobut it if you can give me some details.

Also what is Salazopyrin? I dont' think we have that drug over here.

>

>

> Hi

>

> The antibiotic therapy has been used for heaps of things - just

> different methods, from heart disease (reducing calcification - or

> maintaining it's levels) to Gulf War Syndrome.

>

> It's definately worth a try. I stopped Salazopyrin well before I

was

> supposed to recently (I just started Enbrel) because I felt it was

> making me worse not better. I stopped the Arava after the 3 month

> minumum to try the next therapy under our Pharmaceutical benefits

> scheme because it did nothing for my RA and I am still in child

bearing

> age so wanted it gone ASAP from my system. I'm wondering if it's

just

> my system trying to cope with all the extra chemicals and when

they're

> not working, it does nothing but hamper the bodies natural ability

to

> cope / extract it through the system? In my early RA days I swam

2kms

> and rode my bike a lot as well as other team sports. These days i'm

> waiting on heart surgery so my sport is to a bare minimum - i'm

sure

> that doesn't help my body getting rid of these additional toxins in

> additon to the inorganic chemicals the inflammatory process

provides (I

> sure know my " depression " from them is a lot worse).

>

> Because you're in the US really investigate getting a great

Antibiotic

> Protocol Doctor on your side. I know it's a registered DMARD now

but

> the way it was used to treat RA and other diseases (with amazing

> results over a I think 50-60 year period) is more complex than just

> popping some tetracycline antibiotic because of it's damaging

cytokines

> properties. I wished we had these resources here in Australia.

They

> are personalised regimes and for many people they worked. They

just

> might work for you.

>

> Also investigate getting some good PCR testing over there if you're

> able. It's only relatively new, but exists there in the states are

> higher levels (some of ours is flown over for testing) but can show

up

> tinnier bacterium than we were previously able to know was present

in

> our systems.

>

>

> Best of luck and I always say with these things - listen to your

> instincts, doctors are still only human with limited resources.

>

>

[Guest guest]

Hi

PCR testing is polymerase chain reaction testing. They can be used to

test for Mycoplasmas.

Sorry Salazopyrin is one of the brand names for Sulfasalazine (the

sulfur antibiotic used as a DMARD) here in Australia.

Also if you're concerned about inducing your system into a Lupus

state a doctor can use Doxycyline instead of Minocin. There have

been many Lupus patients treated with Tetracyclines with positive

results.

I read over the drug information that accompanied my enbrel and don't

see the figures from the trials being a drug that always works either

(or giving me great results at avoiding these dreaded errosions) -

none of these drugs new or old work for everyone. I got errosions

with the Doxycyline but i'm also getting them with the Sulfasalazine,

MXT, Cortisone and Arava.... none is a miracle cure and we are all

different.

>

> What is PCR testing? Never heard of that. Would like to ask the

doc

> aobut it if you can give me some details.

>

> Also what is Salazopyrin? I dont' think we have that drug over

here.

>

>

[Guest guest]

.

It is true that no DMARD works for all rheumatoid arthritis patients.

For the patients who do respond to Enbrel, there is much evidence that

it can be very effective in reducing disease activity and preventing

erosions. A similar quantity of good quality evidence demonstrating

efficacy comparable to Enbrel does not exist for minocycline or

doxycycline.

There also is no body of evidence which demonstrates the safety and

efficacy of tetracyclines in the treatment of systemic lupus.

Not an MD

On Tue, Feb 3, 2009 at 5:50 AM, blondewbrains1971

<blondewbrains1971@...> wrote:

>

> Hi

>

> PCR testing is polymerase chain reaction testing. They can be used to

> test for Mycoplasmas.

>

> Sorry Salazopyrin is one of the brand names for Sulfasalazine (the

> sulfur antibiotic used as a DMARD) here in Australia.

>

> Also if you're concerned about inducing your system into a Lupus

> state a doctor can use Doxycyline instead of Minocin. There have

> been many Lupus patients treated with Tetracyclines with positive

> results.

>

> I read over the drug information that accompanied my enbrel and don't

> see the figures from the trials being a drug that always works either

> (or giving me great results at avoiding these dreaded errosions) -

> none of these drugs new or old work for everyone. I got errosions

> with the Doxycyline but i'm also getting them with the Sulfasalazine,

> MXT, Cortisone and Arava.... none is a miracle cure and we are all

> different.

>

>

[Guest guest]

, could you please help me understand what you meant when you say " if

you're concerned about inducing your system into a Lupus state " ??? thanks a lot

a

[ ] Re: antibiotic treatment for RA/

Hi

PCR testing is polymerase chain reaction testing. They can be used to

test for Mycoplasmas.

Sorry Salazopyrin is one of the brand names for Sulfasalazine (the

sulfur antibiotic used as a DMARD) here in Australia.

Also if you're concerned about inducing your system into a Lupus

state a doctor can use Doxycyline instead of Minocin. There have

been many Lupus patients treated with Tetracyclines with positive

results.

I read over the drug information that accompanied my enbrel and don't

see the figures from the trials being a drug that always works either

(or giving me great results at avoiding these dreaded errosions) -

none of these drugs new or old work for everyone. I got errosions

with the Doxycyline but i'm also getting them with the Sulfasalazine,

MXT, Cortisone and Arava.... none is a miracle cure and we are all

different.

>

> What is PCR testing? Never heard of that. Would like to ask the

doc

> aobut it if you can give me some details.

>

> Also what is Salazopyrin? I dont' think we have that drug over

here.

>

>

[Guest guest]

Hi a

It is thought some drugs can cause lupus like symptoms. It is not

actually lupus. In most cases once the drug or medication is removed

so do the symptoms.

There is a school of thought that some of the reported " lupus like

symptoms " witht the use of some of the tetracyclines (mino, doxcy etc)

are part of the herxheimer effect (ie worsening of symptoms before

getting better - but meaning the drug is actually working). Also as

there are a few different drugs within this family there is the

opportunity to try a different one. When Doxycyline seemed to loose

it's effectiveness I started on euromycin but it was more difficult for

me to get this on script here.

Hope this helps?

--- In , " patandpaula " <patandpaula@...>

wrote:

>

> , could you please help me understand what you meant when you

say " if you're concerned about inducing your system into a Lupus

state " ??? thanks a lot a

[Guest guest]

, thanks a lot, that does help a lot. a

[ ] Re: antibiotic treatment for RA/

Hi a

It is thought some drugs can cause lupus like symptoms. It is not

actually lupus. In most cases once the drug or medication is removed

so do the symptoms.

There is a school of thought that some of the reported " lupus like

symptoms " witht the use of some of the tetracyclines (mino, doxcy etc)

are part of the herxheimer effect (ie worsening of symptoms before

getting better - but meaning the drug is actually working). Also as

there are a few different drugs within this family there is the

opportunity to try a different one. When Doxycyline seemed to loose

it's effectiveness I started on euromycin but it was more difficult for

me to get this on script here.

Hope this helps?

>

> , could you please help me understand what you meant when you

say " if you're concerned about inducing your system into a Lupus

state " ??? thanks a lot a

[Guest guest]

,

I was in New Orleans after Katrina. I did evacuate, but went back to

get my things. ( what was left) Almost everyone I knew got sick. Some

had skin diseases from the water, others had coughs that lasted for

years, some died. The news did not cover hardly any of that. I would

suspect either a bacteria or fungus infection. ( most likely fungus)

Mold alone can cause many disease including lung and blood. You may

need to go to a doctor that specializes communicable or blood related

disease. Another possibility would be to contact the Center for Disease

control. I know it is difficult but find a doctor who will listen.

( Just with my possible RA, I have been to three)

Good luck