Re: Re: Is Plaquenil making me worse? TOM

November 9, 2008

It ALL scares me , it's all medicine. And the only thing I tried

conventionally was Plaquenil for 2 months, despite them saying it takes 4-6

months. I just dont know if I believe that something wont help a little even a

month after you start.

But I did give Doxy a fair try of a year. I think the confusing part for me is

how something can take YEARS to obtain benefit? I cant help but feel if it took

years, what OTHER factor(s) could it be to turn things around? I mean, after a

year on antibiotics shouldnt I have a LITTLE relief? Just enough to notice and

make me want to continue? Even if it takes years shouldnt I have some little

improvement to motivate me to continue to take them despite the risks? As there

are risks with all meds long term.

I would consider doing abx again, but with many antibiotics approach like the

other group does. But I wish I had a little more evidence this is the way to go,

another person in a similar boat as me who went that way and is now better. I am

bad, so maybe I have nothing to lose. But still, dont want to go from 7 bad to 9

bad either, adding new issues to the list.

How does one know what to do. Everyone has a different protocol its so

confusing. I fear I will spend my life miserable constantly trying new things

that fail me.

From: Petty <jamesapetty@ att.net <mailto:jamesapetty %40att.net> >

Subject: rheumatic Re: Is Plaquenil making me worse?

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Sunday, November 9, 2008, 12:36 PM

So are you saying you take this with Plaquenil or are taking it as a

substitute for it?

Also, how long were you taking minocin? What dosage?

>

> lind, I was told to never go off of Plaquenil as it can induce

flares.

> About a year ago, my Rheumatologist introduced Quinacrine to my

regimen with

> Plaquenil. It is another anti malaria & it was used years ago

during WWII

> but sort of went out of fashion when Plaquenil came on the market.

It has

> to be compounded but is not expensive at all. I take 100mg per day

& there

> are new studies that show that it and Plaquenil work synergistically

> together. I had done the Minocin thing w/o any appreciable results. My

> goodness, what a blessing this drug has been. It has totally

ELIMINATED my

> fatigue and brain fog. I no longer have the desire to nap....ever.

I can't

> even tell you how this drug has enhanced the quality of my life. If you

> want to google more about it, le Wallace has several publications

> about it & one of them is called Reexamining the Use of Quinacrine in

> Rheumatic diseases. It does not cause the potential eye problems that

> Plaquenil can. It has the potential to make your skin slightly

yellow in

> appearance, but that's usually in high doses. I have very fair skin

& it is

> not noticeable at all on me. It's been a miracle for me.

>

> _____

>

> From: rheumatic@grou ps.com [mailto:rheumatic@ grou ps.com]

On Behalf

> Of lind Gittings

> Sent: Saturday, November 08, 2008 3:38 PM

> rheumatic@grou ps.com

> Subject: rheumatic Is Plaquenil making me worse?

>

> Hi

>

> I've heard from many RA sufferers about the 'brain fog' that often

> seems to accompany the disease. I have it too, especially short term

> memory problems. I also realised this year that I can't multi-task as

> I used to and everything new that I learn is more of a challenge to

> master. For myself I also wonder if it's about ageing, not that 63 is

> old, but other friends without RA complain of short term memory

> problems too.

>

> I took Plaquenil for about a year, then went off it for a year, then

> because of the pain went back on it again. I haven't noticed any

> difference in the brain fog whether I was on it or off it. Since RA

> causes inflammation throughout the body, maybe it does affect our

> brains as well, the brain being part of the body. Some people on this

> list and the Roadback list have said that their brain fog lifted once

> they went into remission - makes sense - but for some that can be a

> long long time.

>

> Plaquenil has been very good for me in reducing pain levels. I don't

> know whether the minocycline is doing anything since when I stopped

> the plaquenil and was only on mino, the pain returned viciously. I

> used naprosyn and celebrex to cope with it which caused kidney damage

> and terrible digestive problems. With the minocycline I tried

> different doses and different time frames and nothing made a

> difference. Next year I'll stop the mino for a while and see if there

> is any change.

>

> I've also found that anxiety makes my brain fog worse. Before I used

> to be able to function even during anxious or stressful times, but

> now I have to nip anxiety in the bud as soon as it starts or I'm

> useless intellectually.

>

> Good luck with your investigations.

>

> Ros

>

November 10, 2008

You have 2 choices when it comes to medications. Toxic or non-toxic. You can

also choose to take none. Since there is no known cure, you and all of us just

take our chances and go with it. There are no guarantees with anything. Go

with what works. The reason the pro Infectious people give us for taking a long

time to see a difference is that mycoplasmas are slow growing, and slow dying.

It is a long battle, like a war. Starting antibiotics and stopping shortly

makes them grow back again. Therefore for antibiotics, a period of years is

needed to wipe out the entire colonies of the bacteria and then some more may be

needed for a lifetime as mycoplasmas are everywhere and we can repick them up

again. It is a war and the antibiotics always need to be there. Think of them

as the soldiers in a war. Just because we win a battle, we do not withdraw the

troops. Wars take years, so does certain illnesses. And then some wars we win

and

some we lose, No one has ever promised us a tomorrow. Live for today.

Dolores & Mike

From: Petty <jamesapetty@ att.net <mailto:jamesapetty %40att.net> >

Subject: rheumatic Re: Is Plaquenil making me worse?

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Sunday, November 9, 2008, 12:36 PM

So are you saying you take this with Plaquenil or are taking it as a

substitute for it?

Also, how long were you taking minocin? What dosage?

>

> lind, I was told to never go off of Plaquenil as it can induce

flares.

> About a year ago, my Rheumatologist introduced Quinacrine to my

regimen with

> Plaquenil. It is another anti malaria & it was used years ago

during WWII

> but sort of went out of fashion when Plaquenil came on the market.

It has

> to be compounded but is not expensive at all. I take 100mg per day

& there

> are new studies that show that it and Plaquenil work synergistically

> together. I had done the Minocin thing w/o any appreciable results. My

> goodness, what a blessing this drug has been. It has totally

ELIMINATED my

> fatigue and brain fog. I no longer have the desire to nap....ever.

I can't

> even tell you how this drug has enhanced the quality of my life. If you

> want to google more about it, le Wallace has several publications

> about it & one of them is called Reexamining the Use of Quinacrine in

> Rheumatic diseases. It does not cause the potential eye problems that

> Plaquenil can. It has the potential to make your skin slightly

yellow in

> appearance, but that's usually in high doses. I have very fair skin

& it is

> not noticeable at all on me. It's been a miracle for me.

>

> _____

>

> From: rheumatic@grou ps.com [mailto:rheumatic@ grou ps.com]

On Behalf

> Of lind Gittings

> Sent: Saturday, November 08, 2008 3:38 PM

> rheumatic@grou ps.com

> Subject: rheumatic Is Plaquenil making me worse?

>

> Hi

>

> I've heard from many RA sufferers about the 'brain fog' that often

> seems to accompany the disease. I have it too, especially short term

> memory problems. I also realised this year that I can't multi-task as

> I used to and everything new that I learn is more of a challenge to

> master. For myself I also wonder if it's about ageing, not that 63 is

> old, but other friends without RA complain of short term memory

> problems too.

>

> I took Plaquenil for about a year, then went off it for a year, then

> because of the pain went back on it again. I haven't noticed any

> difference in the brain fog whether I was on it or off it. Since RA

> causes inflammation throughout the body, maybe it does affect our

> brains as well, the brain being part of the body. Some people on this

> list and the Roadback list have said that their brain fog lifted once

> they went into remission - makes sense - but for some that can be a

> long long time.

>

> Plaquenil has been very good for me in reducing pain levels. I don't

> know whether the minocycline is doing anything since when I stopped

> the plaquenil and was only on mino, the pain returned viciously. I

> used naprosyn and celebrex to cope with it which caused kidney damage

> and terrible digestive problems. With the minocycline I tried

> different doses and different time frames and nothing made a

> difference. Next year I'll stop the mino for a while and see if there

> is any change.

>

> I've also found that anxiety makes my brain fog worse. Before I used

> to be able to function even during anxious or stressful times, but

> now I have to nip anxiety in the bud as soon as it starts or I'm

> useless intellectually.

>

> Good luck with your investigations.

>

> Ros

>

November 10, 2008

Hi Tom, Let me clarify a bit. I was talking to someone who seems to not be able

to make up it's mind on anything and this person has been jumping from one thing

to another rather quickly and wonders why nothing is working. This person (to

my knowledge) has been on this site for about two years saying the same thing.

I was on Minocin for 18 months before I went into remission. I continued as my

doctor, at that time had no other idea than to continue. But I felt I still

needed to step up. So after several months of research I started on the

Marshall Protocol and am still on it after 13 months and will continue until I

am passed phase 3. Time line, I figure will be around year # 4. I have

scleroderma. One Doctor said he thought I had R/A and/or MCTD in addition to

S/D. Another said I had CREST. Only problem with these diagnosis is that I had

some of the symptoms but not all. So, I decided that Scleroderma was what I

should treat as they

all agreed on that. It was the deadliest and it definitely had attacked my

lungs. I was in Pulmonary Fibrosis, and for a short time, Pulmonary Arterial

Hypertension. My disease began regressing within 6 weeks after starting the

Minocin. (The Raynauds was the first to go) and this continued until all

symptoms were stablized and began healing. That is when I decided to advance my

treatment. I chose Marshall because it also included Minocin and added

Clindamycin and Zithromycin at different levels and different dosages. Much

more complicated, but with great explanation and follow up from the team at MP.

I was warned that this protocol would make me feel worse at times and experience

herxheimer symptoms. It did. But I treated the symptoms with info from the

protocol and concentrated on wiping out the micoplasmas. To go on to this long

term protocol, I had to stop the high doses of Minocin I was on and once free of

the medication, my

body could then start the new protocol. Since micoplasmas are slow growing, I

didn't feel that a 6 week absence would make a difference. And it didn't. It

is the starting and stopping and jumping from one thing to another and not

seeing any positive results that makes me think doing that is contrary to long

term remission. People who jump around constantly are just looking for instant

relief and not focusing on the cause. Maybe they don't believe in the

Infectious Theory or maybe it doesn't apply to their disease. So, the answer is

if you are not in immediate danger like I was with my lungs, go for the food

process. A few weeks off will not make micoplasmas grow fast enough to cause

further damage. After you have found out what foods work, you can go back on the

Minocin and omit the foods that cause you problems. But never lose sight of the

cure while treating the symptoms. Good luck with your food regimen and let us

know how you

make out. I am writing a book on how people with these so-called auto

immune diseases cope. I am one who does not believe that the body is programmed

to attack itself. There has to be a cause of a foreign substance invading the

immune cells to cause the healthy immune cells to attack the infected immune

cells. That is their job! There are so many stories, I found so fascinating

that I was prompted to start this book. I have been researching and writing

for almost two years and have learned so much. I would like to put in a

chapter about foods and how they react with and without medication. I would like

to use your input and the story of others like you who are trying different

diets. So far, I have noticed that Gluten free diets are the most successful.

So now when I go to different supermarkets, I check out the shelves and notice

more and more products being made are gluten free. So someone out there must be

doing some research

as the gluten free foods are getting tastier and increasing in numbers.

Starting a fast has been done for as long as there has been mankind. There are

many references to fasting in the scriptures. Starting back on foods that are

simple and one at a time is what we do with babies once they start weaning.

Looking for foods that cause trouble that way is easy and not confusing. Once

you can find and eliminate the foods that cause you trouble, I'm sure you will

feel better, but to kill the toxic bacteria will take going back on the

antibiotic. There is no reason why we can't eliminate foods that are harmful

and continue taking the antibiotic. After all, we still must eat to remain

alive. Thank you for the opportunity to clarify. Best to all of you who are

fasting and or changing diets. And thank you to the moderators of this site for

giving us all the opportunities to learn from each other. Our best, Dolores &

Mike

From: Petty <jamesapetty@...>

Subject: rheumatic Re: Is Plaquenil making me worse? TOM

rheumatic

Date: Monday, November 10, 2008, 1:54 PM

D & M you just said something that made me think....

I am starting a fast today to test for food allergies and the book

said not to take any medications or vitamin supplements while on the

fast. I was planning on fasting for 5-7 days depending on how I feel.

I am currently taking Minocin MWF 100mg but was planning on stopping

for the fast.

Do you think that is a huge mistake to do so? I know you say

" Starting antibiotics and stopping shortly makes them grow back again. "

>

> You have 2 choices when it comes to medications. Toxic or

non-toxic. You can also choose to take none. Since there is no known

cure, you and all of us just take our chances and go with it. There

are no guarantees with anything. Go with what works. The reason the

pro Infectious people give us for taking a long time to see a

difference is that mycoplasmas are slow growing, and slow dying. It

is a long battle, like a war. Starting antibiotics and stopping

shortly makes them grow back again. Therefore for antibiotics, a

period of years is needed to wipe out the entire colonies of the

bacteria and then some more may be needed for a lifetime as

mycoplasmas are everywhere and we can repick them up again. It is a

war and the antibiotics always need to be there. Think of them as the

soldiers in a war. Just because we win a battle, we do not withdraw

the troops. Wars take years, so does certain illnesses. And then some

wars we win and

> some we lose, No one has ever promised us a tomorrow. Live for

today. Dolores & Mike

>

November 11, 2008

Hi . Sorry, I called you Tom. I am Dolores and I am the one who has

scleroderma. Mike is my husband and right hand man. We have served as

volunteers for the S/D foundation and met so many wonderful people while we were

living in NYC. Because of my damaged lungs, I had to move to a warmer climate.

I miss NYC terribly, but know that my lungs will not have to work so hard while

breathing in ice cold air. Last winter it was painful to take a deep breathe

while walking in cold and wind.

Day 1. Glad to hear you have started. Do you make the broth from scratch? What

ingredients are in the broth. If you buy canned broth, check for high sodium

levels and

try to find the lower sodium ones. Too much sodium can make you retain more

fluids than you need which puts pressure on the kidneys and heart by making them

work harder to rid the body of extra fluid. If you are young, your body could

probably handle it for a short time. If you are older, have your blood pressure

checked fairly frequently. Most pharmacy's, K-marts and Walmarts have them. You

can also pick up a small one for under $20.00 at any pharmacy. I have one that

I wrap around my wrist. I'll be watching for e:mails from you giving us

information as you go along. We wish you great success. Dolores & Mike

From: Petty <jamesapetty@...>

Subject: rheumatic Re: Is Plaquenil making me worse? TOM

rheumatic

Date: Monday, November 10, 2008, 6:19 PM

Mike I'll be happy to report my experience on this fast. Thanks for

the clarification.

On day 1 now and sipping some broth with almost no calories!

>

> Hi Tom, Let me clarify a bit. I was talking to someone who seems to

not be able to make up it's mind on anything and this person has been

jumping from one thing to another rather quickly and wonders why

nothing is working. This person (to my knowledge) has been on this

site for about two years saying the same thing. I was on Minocin for

18 months before I went into remission. I continued as my doctor, at

that time had no other idea than to continue. But I felt I still

needed to step up. So after several months of research I started on

the Marshall Protocol and am still on it after 13 months and will

continue until I am passed phase 3. Time line, I figure will be

around year # 4. I have scleroderma. One Doctor said he thought I

had R/A and/or MCTD in addition to S/D. Another said I had CREST.

Only problem with these diagnosis is that I had some of the symptoms

but not all. So, I decided that Scleroderma was what I should treat

as they

> all agreed on that. It was the deadliest and it definitely had

attacked my lungs. I was in Pulmonary Fibrosis, and for a short time,

Pulmonary Arterial Hypertension. My disease began regressing within 6

weeks after starting the Minocin. (The Raynauds was the first to go)

and this continued until all symptoms were stablized and began

healing. That is when I decided to advance my treatment. I chose

Marshall because it also included Minocin and added Clindamycin and

Zithromycin at different levels and different dosages. Much more

complicated, but with great explanation and follow up from the team at

MP. I was warned that this protocol would make me feel worse at times

and experience herxheimer symptoms. It did. But I treated the

symptoms with info from the protocol and concentrated on wiping out

the micoplasmas. To go on to this long term protocol, I had to stop

the high doses of Minocin I was on and once free of the medication, my

> body could then start the new protocol. Since micoplasmas are slow

growing, I didn't feel that a 6 week absence would make a difference.

And it didn't. It is the starting and stopping and jumping from one

thing to another and not seeing any positive results that makes me

think doing that is contrary to long term remission. People who jump

around constantly are just looking for instant relief and not focusing

on the cause. Maybe they don't believe in the Infectious Theory or

maybe it doesn't apply to their disease. So, the answer is if you are

not in immediate danger like I was with my lungs, go for the food

process. A few weeks off will not make micoplasmas grow fast enough

to cause further damage. After you have found out what foods work, you

can go back on the Minocin and omit the foods that cause you

problems. But never lose sight of the cure while treating the

symptoms. Good luck with your food regimen and let us know how you

> make out. I am writing a book on how people with these so-called

auto immune diseases cope. I am one who does not believe that the body

is programmed to attack itself. There has to be a cause of a foreign

substance invading the immune cells to cause the healthy immune cells

to attack the infected immune cells. That is their job! There are so

many stories, I found so fascinating that I was prompted to start this

book. I have been researching and writing for almost two years and

have learned so much. I would like to put in a chapter about foods

and how they react with and without medication. I would like to use

your input and the story of others like you who are trying different

diets. So far, I have noticed that Gluten free diets are the most

successful. So now when I go to different supermarkets, I check out

the shelves and notice more and more products being made are gluten

free. So someone out there must be doing some research

> as the gluten free foods are getting tastier and increasing in

numbers. Starting a fast has been done for as long as there has been

mankind. There are many references to fasting in the scriptures.

Starting back on foods that are simple and one at a time is what we do

with babies once they start weaning. Looking for foods that cause

trouble that way is easy and not confusing. Once you can find and

eliminate the foods that cause you trouble, I'm sure you will feel

better, but to kill the toxic bacteria will take going back on the

antibiotic. There is no reason why we can't eliminate foods that are

harmful and continue taking the antibiotic. After all, we still must

eat to remain alive. Thank you for the opportunity to clarify. Best

to all of you who are fasting and or changing diets. And thank you to

the moderators of this site for giving us all the opportunities to

learn from each other. Our best, Dolores & Mike

>

November 11, 2008

The broth sounds good. I make a similar broth only I heighten the taste up with

some onion, garlic, parsley and dill. I also like to add a pinch of Kosher

salt. It is coarser than table salt and has a better flavor. How was your

sencond day? If you are successful, I may just try the broth fast next month

after thanksgiving. But I would stay on my medication as I do not want to

interrupt the protocol I am on. I've come a long way on it and need not mess it

up now. My reason is to detox and lose a couple of lbs. I'm seeing a

gastroenterologist in my new city tomorrow. This is a yearly follow up as I

have had interrmittent gastric problems at times along the way and want to make

sure I don't develop a cancerous tumor or something from the inflammation and

also to check for an accumulation of fibrous tissue. Keep up the good work and

let us know how you are feeling. Dolores & Mike

From: Petty <jamesapetty@...>

Subject: rheumatic Re: Is Plaquenil making me worse? TOM

rheumatic

Date: Tuesday, November 11, 2008, 1:31 PM

I made the broth from scratch. I used carrots, potatoes, and celery

with some miso, per the books suggestion. It's not to bad but I'm 29

and stay pretty active, or as much as I can with my hands jacked up.

So I like to eat Which makes it hard hehe

> >

> > Hi Tom, Let me clarify a bit. I was talking to someone who seems to

> not be able to make up it's mind on anything and this person has been

> jumping from one thing to another rather quickly and wonders why

> nothing is working. This person (to my knowledge) has been on this

> site for about two years saying the same thing. I was on Minocin for

> 18 months before I went into remission. I continued as my doctor, at

> that time had no other idea than to continue. But I felt I still

> needed to step up. So after several months of research I started on

> the Marshall Protocol and am still on it after 13 months and will

> continue until I am passed phase 3. Time line, I figure will be

> around year # 4. I have scleroderma. One Doctor said he thought I

> had R/A and/or MCTD in addition to S/D. Another said I had CREST.

> Only problem with these diagnosis is that I had some of the symptoms

> but not all. So, I decided that Scleroderma was what I should treat

> as they

> > all agreed on that. It was the deadliest and it definitely had

> attacked my lungs. I was in Pulmonary Fibrosis, and for a short time,

> Pulmonary Arterial Hypertension. My disease began regressing within 6

> weeks after starting the Minocin. (The Raynauds was the first to go)

> and this continued until all symptoms were stablized and began

> healing. That is when I decided to advance my treatment. I chose

> Marshall because it also included Minocin and added Clindamycin and

> Zithromycin at different levels and different dosages. Much more

> complicated, but with great explanation and follow up from the team at

> MP. I was warned that this protocol would make me feel worse at times

> and experience herxheimer symptoms. It did. But I treated the

> symptoms with info from the protocol and concentrated on wiping out

> the micoplasmas. To go on to this long term protocol, I had to stop

> the high doses of Minocin I was on and once free of the medication, my

> > body could then start the new protocol. Since micoplasmas are slow

> growing, I didn't feel that a 6 week absence would make a difference.

> And it didn't. It is the starting and stopping and jumping from one

> thing to another and not seeing any positive results that makes me

> think doing that is contrary to long term remission. People who jump

> around constantly are just looking for instant relief and not focusing

> on the cause. Maybe they don't believe in the Infectious Theory or

> maybe it doesn't apply to their disease. So, the answer is if you are

> not in immediate danger like I was with my lungs, go for the food

> process. A few weeks off will not make micoplasmas grow fast enough

> to cause further damage. After you have found out what foods work, you

> can go back on the Minocin and omit the foods that cause you

> problems. But never lose sight of the cure while treating the

> symptoms. Good luck with your food regimen and let us know how you

> > make out. I am writing a book on how people with these so-called

> auto immune diseases cope. I am one who does not believe that the body

> is programmed to attack itself. There has to be a cause of a foreign

> substance invading the immune cells to cause the healthy immune cells

> to attack the infected immune cells. That is their job! There are so

> many stories, I found so fascinating that I was prompted to start this

> book. I have been researching and writing for almost two years and

> have learned so much. I would like to put in a chapter about foods

> and how they react with and without medication. I would like to use

> your input and the story of others like you who are trying different

> diets. So far, I have noticed that Gluten free diets are the most

> successful. So now when I go to different supermarkets, I check out

> the shelves and notice more and more products being made are gluten

> free. So someone out there must be doing some research

> > as the gluten free foods are getting tastier and increasing in

> numbers. Starting a fast has been done for as long as there has been

> mankind. There are many references to fasting in the scriptures.

> Starting back on foods that are simple and one at a time is what we do

> with babies once they start weaning. Looking for foods that cause

> trouble that way is easy and not confusing. Once you can find and

> eliminate the foods that cause you trouble, I'm sure you will feel

> better, but to kill the toxic bacteria will take going back on the

> antibiotic. There is no reason why we can't eliminate foods that are

> harmful and continue taking the antibiotic. After all, we still must

> eat to remain alive. Thank you for the opportunity to clarify. Best

> to all of you who are fasting and or changing diets. And thank you to

> the moderators of this site for giving us all the opportunities to

> learn from each other. Our best, Dolores & Mike

> >

>

November 12, 2008

Hi Dolores and Mike,

Now Dolores when I saw you in September you didn't look like you needed to lose

weight. Don't lose to much if you go on the soup diet.

I am going to have a blood test done for my allergies. It's called a LEAP test,

my husband asked me if I had to leap around, funny, ha hah. About four weeks

after that I find out what my allergies are and have to see a dietitian.

hope both of you are doing well, I am still hanging in there.

Take care,

Eva

From: Petty <jamesapetty@ att.net>

Subject: rheumatic Re: Is Plaquenil making me worse? TOM

rheumatic@grou ps.com