Re: Re: [rheumatic still aching too!

[Guest guest]

I will add my voice to this thread. Doxycycline worked marvelously

and then stopped after about a year. I went on Minocin, and it worked

for about two years. Now I went back to a conventional

rheumatologist, and he has me on methotrexate, which is better but not

good enough. I don't mean to be disloyal to the AP, but I am in so

much pain (lower back, knees, wrists,ankles, elbows) that I w ill do

anything he suggests when I see him today. I'm scared!

B

On Feb 13, 2009, at 6:42 AM, mike rosner wrote:

> Hi Mona, Yes, the same thing is happening to me and also in my

> hips,thighs and lower back. (But that last part may be due to

> kidney stone formation!!) I was on Mino 100mg twice a day for 18

> months and did absolutely wonderful. Was in remission when I

> decided to go on the Marshall Protocol and cut way back on the

> Mino. I, too did not realize that these aches were creeping back up

> on me. Added clindamycin (tiny amount), but the aches kept

> increasing. Was told it was IP. That part wasn't true. Was taking

> lots of Benicar to help the IP. Nothing happened. Asked everyone

> if the it was truly IP or the disease. Got various answers. My new

> doc told me to cut way back on the Benicar. I did. Still achy.

> Just starting the to introduce the third antibiotic and decided

> since I am retired, I can live where I want. I moved away from NY.

> The cold was causing increased achiness also. Went to Texas for a

> few months, then northern Florida.

> Well, it gets down into the 30's here. My mom came to live with us

> as she developed Alzheimers. We've had the heat on all winter and

> am still wearing my winter coat and hat. Had enough! Started

> looking for a place in Puerto Rico. Am purchasing a 3.5 acre spread

> with a house on it and loaded with tropical fruit trees. If all goes

> well, we should be closing by May and moving in sometime in

> November. The house needs some cosmetic work which we will have

> done over the summer. Looking forward to spending next winter in the

> warm climate and will give you all an update to see if I fare better

> in the heat. Meanwhile, I have cut out all Benicar and on three

> antibiotics. Still ramping up on dosages. We shall see how it

> goes. I have scleroderma, R/A & possibly MCTD according to one of

> the Rheumy's I've seen in the past.

> Cheer up, spring will be here soon. Hot showers and warm baths

> sometimes helps. Take care, Dolores & Mike

>

>

>

> From: Mona Goldstein <spellers@...>

> Subject: Re: rheumatic Return of RA on mino

> rheumatic

> Date: Thursday, February 12, 2009, 9:19 PM

>

> Actually, I forgot-it did happen to me also. I have reactive

> arthritis and was on 200mg a day of Doxycycline for about a year,

> when I realized that it had stopped working. Unfortunately, I wasn't

> very aware that I was getting worse at first, so the illness started

> to affect new joints, like my hips. But,thanks to this group, I was

> able to ask my rheumy for 200 mgs. of Minocycline instead, and

> again, within two weeks, the pain was under control again. I have

> biggest problems with my illness during the miserable cold and

> rainy(this year-snowy)NY winters and marvel how my illness can vary

> day to day according to the weather. I feel great on days when the

> temperatures are above 35 degrees and the sun is out and no rain is

> in the forecast.

> I started out with one generic minocycline. When the winter set in

> and it wasn't as effective anymore, I tried another generic by the

> company, and it definitely worked better. But as the weather

> got worse and colder, that didn't work either. Now, I just started

> 200mg. Minocin and am hoping it'll do the trick.

> Is this common that the A/P stops working? At least there are other

> antibiotics to try.

> Mona

> rheumatic Return of RA on mino

>

> Hi Anne

>

> I had a similar thing happen for me in that in 2006 I began mino

> 100mg MWF and after a few months all my pain was gone. But it came

> back about a year later. I tried different doses and tried having it

> daily and it worked for a while but then the inflammation started

> again. Like you, I was in awful pain, desperate and beginning to get

> deformities. I couldn't take Celebrex or other NSAIDS because of

> diverticulitis and didn't want to take prednisone for too long

> because I already have quite bad spinal osteoarthritis. So I decided

> to try Plaquenil again (which I'd had at the beginning of treatment

> before the mino and it didn't work so well), and the combination of

> the mino and plaq has done the trick! I've always refused

> methotrexate and hope I never have to use it. I still get minor

> flitting pains now and then but use paracetamol (acetaminophen)

> occasionally for that.

>

> One of the other people on this list said that this combination works

> for her too. Also, there was something recently about cysts forming

> with some form of mycoplasma infections and that this could

> necessitate other types of drugs. Of course, the food sensitivity

> connection is important too.

>

> Good luck with staying off the methotrexate and other heavier drugs.

>

> Ros

>

>

[Guest guest]

Hello everyone,

 

I have been on antibiotics since last year in January, I know that this is a

short time. I am taking Biaxin and Minocylin at this time. I do feel a lot

better, but because I have other health issues from taking Prednison (3 years)

Cytoxen (chemo 1 year) Cellcept, Enbrel (1 year) plus having interstitial

pulmonary fibrosis, dermatomyosisits and Ankylosing Spondylitis it is a very

slow process.

Many of you who have been on the AP a long time have had to change your

antibiotics because it is not working as you hoped it should. I have been

reading all the msg's coming through and I think we either get too used to our

meds and not ask the doctor when we see them if there could be a possibility we

need to change or up our meds for a period of time.

I have a feeling the mycroplasma knows when we get in a rut with the meds and it

starts rearing it's ugly head.

Should we up the meds for a period of time, change it or do some combination of

it. I have been pulsing, but some weeks I use the dose on the bottle and then I

do a week were I just to MWF for one antibiotic and TThS for the other one. Some

Sundays I just do all the supplements and no antibiotics.

My AS is giving me the most problem because it weakened my back right through

the middle and it is fused on the last four vertebra's on the bottom. So walking

upright is hard. I have to wear a brace every day and have to do exercises to

keep from getting more bend over.

Also I try to stay on the gluten-free diet as much as I can. I know when I eat

certain foods my hands look I had them in hot water. Also doing probiotics is

very important, when the gut is sick we are sick.

As I told someone the other day I will try about anything to get well even to go

to my regular doctor for help. I have a good GP who works with me and I am

trying to have her do all the testing that has been recommended for infectious

diseases. It's slow, sometimes she is not okay with what I ask for but after the

second or third request she comes along.

 

Regards,

Eva

>

> From: Mona Goldstein <spellersoptonline (DOT) net>

> Subject: Re: rheumatic Return of RA on mino

> rheumatic@grou ps.com

> Date: Thursday, February 12, 2009, 9:19 PM

>

> Actually, I forgot-it did happen to me also. I have reactive

> arthritis and was on 200mg a day of Doxycycline for about a year,

> when I realized that it had stopped working. Unfortunately, I wasn't

> very aware that I was getting worse at first, so the illness started

> to affect new joints, like my hips. But,thanks to this group, I was

> able to ask my rheumy for 200 mgs. of Minocycline instead, and

> again, within two weeks, the pain was under control again. I have

> biggest problems with my illness during the miserable cold and

> rainy(this year-snowy)NY winters and marvel how my illness can vary

> day to day according to the weather. I feel great on days when the

> temperatures are above 35 degrees and the sun is out and no rain is

> in the forecast.

> I started out with one generic minocycline. When the winter set in

> and it wasn't as effective anymore, I tried another generic by the

> company, and it definitely worked better. But as the weather

> got worse and colder, that didn't work either. Now, I just started

> 200mg. Minocin and am hoping it'll do the trick.

> Is this common that the A/P stops working? At least there are other

> antibiotics to try.

> Mona

> rheumatic Return of RA on mino

>

> Hi Anne

>

> I had a similar thing happen for me in that in 2006 I began mino

> 100mg MWF and after a few months all my pain was gone. But it came

> back about a year later. I tried different doses and tried having it

> daily and it worked for a while but then the inflammation started

> again. Like you, I was in awful pain, desperate and beginning to get

> deformities. I couldn't take Celebrex or other NSAIDS because of

> diverticulitis and didn't want to take prednisone for too long

> because I already have quite bad spinal osteoarthritis. So I decided

> to try Plaquenil again (which I'd had at the beginning of treatment

> before the mino and it didn't work so well), and the combination of

> the mino and plaq has done the trick! I've always refused

> methotrexate and hope I never have to use it. I still get minor

> flitting pains now and then but use paracetamol (acetaminophen)

> occasionally for that.

>

> One of the other people on this list said that this combination works

> for her too. Also, there was something recently about cysts forming

> with some form of mycoplasma infections and that this could

> necessitate other types of drugs. Of course, the food sensitivity

> connection is important too.

>

> Good luck with staying off the methotrexate and other heavier drugs.

>

> Ros

>

>

[Guest guest]

Mike-lucky you to be at that stage where you can pick up and move to Puerto

Rico. I am jealous about that, but we still have ties here-my husband's job,

kids' schools, etc. Eventually, we are also going to head to a warmer place-not

Florida-we went to warm up in January for a week and instead was clearing ice

off the car without an ice scraper.

Mona

rheumatic Return of RA on mino

Hi Anne

I had a similar thing happen for me in that in 2006 I began mino

100mg MWF and after a few months all my pain was gone. But it came

back about a year later. I tried different doses and tried having it

daily and it worked for a while but then the inflammation started

again. Like you, I was in awful pain, desperate and beginning to get

deformities. I couldn't take Celebrex or other NSAIDS because of

diverticulitis and didn't want to take prednisone for too long

because I already have quite bad spinal osteoarthritis. So I decided

to try Plaquenil again (which I'd had at the beginning of treatment

before the mino and it didn't work so well), and the combination of

the mino and plaq has done the trick! I've always refused

methotrexate and hope I never have to use it. I still get minor

flitting pains now and then but use paracetamol (acetaminophen)

occasionally for that.

One of the other people on this list said that this combination works

for her too. Also, there was something recently about cysts forming

with some form of mycoplasma infections and that this could

necessitate other types of drugs. Of course, the food sensitivity

connection is important too.

Good luck with staying off the methotrexate and other heavier drugs.

Ros

[Guest guest]

Hi Eva,

are you taking the minocin and biaxin together, or you separate them?

I've been on minocin for years but it stopped working late last year. Since

then, I have been in terrible pain.

plz let me know how you take your pills

thanks,

EMAILING FOR THE GREATER GOODJoin me

rheumatic@...: holloway-eva@...: Fri, 13 Feb

2009 08:07:37 -0800Subject: Re: rheumatic Re: [rheumatic still aching too!

Hello everyone, I have been on antibiotics since last year in January, I know

that this is a short time. I am taking Biaxin and Minocylin at this time. I do

feel a lot better, but because I have other health issues from taking Prednison

(3 years) Cytoxen (chemo 1 year) Cellcept, Enbrel (1 year) plus having

interstitial pulmonary fibrosis, dermatomyosisits and Ankylosing Spondylitis it

is a very slow process.Many of you who have been on the AP a long time have had

to change your antibiotics because it is not working as you hoped it should. I

have been reading all the msg's coming through and I think we either get too

used to our meds and not ask the doctor when we see them if there could be a

possibility we need to change or up our meds for a period of time.I have a

feeling the mycroplasma knows when we get in a rut with the meds and it starts

rearing it's ugly head.Should we up the meds for a period of time, change it or

do some combination of it. I have been pulsing, but some weeks I use the dose on

the bottle and then I do a week were I just to MWF for one antibiotic and TThS

for the other one. Some Sundays I just do all the supplements and no

antibiotics.My AS is giving me the most problem because it weakened my back

right through the middle and it is fused on the last four vertebra's on the

bottom. So walking upright is hard. I have to wear a brace every day and have to

do exercises to keep from getting more bend over.Also I try to stay on the

gluten-free diet as much as I can. I know when I eat certain foods my hands look

I had them in hot water. Also doing probiotics is very important, when the gut

is sick we are sick.As I told someone the other day I will try about anything to

get well even to go to my regular doctor for help. I have a good GP who works

with me and I am trying to have her do all the testing that has been recommended

for infectious diseases. It's slow, sometimes she is not okay with what I ask

for but after the second or third request she comes along. Regards,Eva--- On

Fri, 2/13/09, Beckman <beckman5@...> wrote:From: Beckman

<beckman5@...>Subject: Re: rheumatic Re: [rheumatic still aching

too!rheumatic@...: Friday, February 13, 2009, 9:00 AMI will

add my voice to this thread. Doxycycline worked marvelously and then stopped

after about a year. I went on Minocin, and it worked for about two years. Now I

went back to a conventional rheumatologist, and he has me on methotrexate, which

is better but not good enough. I don't mean to be disloyal to the AP, but I am

in so much pain (lower back, knees, wrists,ankles, elbows) that I w ill do

anything he suggests when I see him today. I'm scared! BOn Feb 13, 2009, at

6:42 AM, mike rosner wrote:> Hi Mona, Yes, the same thing is happening to me and

also in my > hips,thighs and lower back. (But that last part may be due to >

kidney stone formation!!) I was on Mino 100mg twice a day for 18 > months and

did absolutely wonderful. Was in remission when I > decided to go on the

Marshall Protocol and cut way back on the > Mino. I, too did not realize that

these aches were creeping back up > on me. Added clindamycin (tiny amount), but

the aches kept > increasing. Was told it was IP. That part wasn't true. Was

taking > lots of Benicar to help the IP. Nothing happened. Asked everyone > if

the it was truly IP or the disease. Got various answers. My new > doc told me to

cut way back on the Benicar. I did. Still achy. > Just starting the to introduce

the third antibiotic and decided > since I am retired, I can live where I want.

I moved away from NY. > The cold was causing increased achiness also. Went to

Texas for a > few months, then northern Florida.> Well, it gets down into the

30's here. My mom came to live with us > as she developed Alzheimers. We've had

the heat on all winter and > am still wearing my winter coat and hat. Had

enough! Started > looking for a place in Puerto Rico. Am purchasing a 3.5 acre

spread > with a house on it and loaded with tropical fruit trees. If all goes >

well, we should be closing by May and moving in sometime in > November. The

house needs some cosmetic work which we will have > done over the summer.

Looking forward to spending next winter in the > warm climate and will give you

all an update to see if I fare better > in the heat. Meanwhile, I have cut out

all Benicar and on three > antibiotics. Still ramping up on dosages. We shall

see how it > goes. I have scleroderma, R/A & possibly MCTD according to one of >

the Rheumy's I've seen in the past.> Cheer up, spring will be here soon. Hot

showers and warm baths > sometimes helps. Take care, Dolores & Mike>> --- On

Thu, 2/12/09, Mona Goldstein <spellersoptonline (DOT) net> wrote:>> From: Mona

Goldstein <spellersoptonline (DOT) net>> Subject: Re: rheumatic Return of RA on

mino> rheumatic@grou ps.com> Date: Thursday, February 12, 2009, 9:19

PM>> Actually, I forgot-it did happen to me also. I have reactive > arthritis

and was on 200mg a day of Doxycycline for about a year, > when I realized that

it had stopped working. Unfortunately, I wasn't > very aware that I was getting

worse at first, so the illness started > to affect new joints, like my hips.

But,thanks to this group, I was > able to ask my rheumy for 200 mgs. of

Minocycline instead, and > again, within two weeks, the pain was under control

again. I have > biggest problems with my illness during the miserable cold and >

rainy(this year-snowy)NY winters and marvel how my illness can vary > day to day

according to the weather. I feel great on days when the > temperatures are above

35 degrees and the sun is out and no rain is > in the forecast.> I started out

with one generic minocycline. When the winter set in > and it wasn't as

effective anymore, I tried another generic by the > company, and it

definitely worked better. But as the weather > got worse and colder, that didn't

work either. Now, I just started > 200mg. Minocin and am hoping it'll do the

trick.> Is this common that the A/P stops working? At least there are other >

antibiotics to try.> Mona> rheumatic Return of RA on mino>> Hi Anne>> I had a similar thing

happen for me in that in 2006 I began mino> 100mg MWF and after a few months all

my pain was gone. But it came> back about a year later. I tried different doses

and tried having it> daily and it worked for a while but then the inflammation

started> again. Like you, I was in awful pain, desperate and beginning to get>

deformities. I couldn't take Celebrex or other NSAIDS because of> diverticulitis

and didn't want to take prednisone for too long> because I already have quite

bad spinal osteoarthritis. So I decided> to try Plaquenil again (which I'd had

at the beginning of treatment> before the mino and it didn't work so well), and

the combination of> the mino and plaq has done the trick! I've always refused>

methotrexate and hope I never have to use it. I still get minor> flitting pains

now and then but use paracetamol (acetaminophen)> occasionally for that.>> One

of the other people on this list said that this combination works> for her too.

Also, there was something recently about cysts forming> with some form of

mycoplasma infections and that this could> necessitate other types of drugs. Of

course, the food sensitivity> connection is important too.>> Good luck with

staying off the methotrexate and other heavier drugs.>> Ros>> [Non-text portions

of this message have been removed]>> [Non-text portions of this message have

been removed]>>>

[Guest guest]

Hi Eva,

are you taking the minocin and biaxin together, or you separate them?

I've been on minocin for years but it stopped working late last year. Since

then, I have been in terrible pain.

plz let me know how you take your pills

thanks,

EMAILING FOR THE GREATER GOODJoin me

rheumatic@...: holloway-eva@...: Fri, 13 Feb

2009 08:07:37 -0800Subject: Re: rheumatic Re: [rheumatic still aching too!

Hello everyone, I have been on antibiotics since last year in January, I know

that this is a short time. I am taking Biaxin and Minocylin at this time. I do

feel a lot better, but because I have other health issues from taking Prednison

(3 years) Cytoxen (chemo 1 year) Cellcept, Enbrel (1 year) plus having

interstitial pulmonary fibrosis, dermatomyosisits and Ankylosing Spondylitis it

is a very slow process.Many of you who have been on the AP a long time have had

to change your antibiotics because it is not working as you hoped it should. I

have been reading all the msg's coming through and I think we either get too

used to our meds and not ask the doctor when we see them if there could be a

possibility we need to change or up our meds for a period of time.I have a

feeling the mycroplasma knows when we get in a rut with the meds and it starts

rearing it's ugly head.Should we up the meds for a period of time, change it or

do some combination of it. I have been pulsing, but some weeks I use the dose on

the bottle and then I do a week were I just to MWF for one antibiotic and TThS

for the other one. Some Sundays I just do all the supplements and no

antibiotics.My AS is giving me the most problem because it weakened my back

right through the middle and it is fused on the last four vertebra's on the

bottom. So walking upright is hard. I have to wear a brace every day and have to

do exercises to keep from getting more bend over.Also I try to stay on the

gluten-free diet as much as I can. I know when I eat certain foods my hands look

I had them in hot water. Also doing probiotics is very important, when the gut

is sick we are sick.As I told someone the other day I will try about anything to

get well even to go to my regular doctor for help. I have a good GP who works

with me and I am trying to have her do all the testing that has been recommended

for infectious diseases. It's slow, sometimes she is not okay with what I ask

for but after the second or third request she comes along. Regards,Eva--- On

Fri, 2/13/09, Beckman <beckman5@...> wrote:From: Beckman

<beckman5@...>Subject: Re: rheumatic Re: [rheumatic still aching

too!rheumatic@...: Friday, February 13, 2009, 9:00 AMI will

add my voice to this thread. Doxycycline worked marvelously and then stopped

after about a year. I went on Minocin, and it worked for about two years. Now I

went back to a conventional rheumatologist, and he has me on methotrexate, which

is better but not good enough. I don't mean to be disloyal to the AP, but I am

in so much pain (lower back, knees, wrists,ankles, elbows) that I w ill do

anything he suggests when I see him today. I'm scared! BOn Feb 13, 2009, at

6:42 AM, mike rosner wrote:> Hi Mona, Yes, the same thing is happening to me and

also in my > hips,thighs and lower back. (But that last part may be due to >

kidney stone formation!!) I was on Mino 100mg twice a day for 18 > months and

did absolutely wonderful. Was in remission when I > decided to go on the

Marshall Protocol and cut way back on the > Mino. I, too did not realize that

these aches were creeping back up > on me. Added clindamycin (tiny amount), but

the aches kept > increasing. Was told it was IP. That part wasn't true. Was

taking > lots of Benicar to help the IP. Nothing happened. Asked everyone > if

the it was truly IP or the disease. Got various answers. My new > doc told me to

cut way back on the Benicar. I did. Still achy. > Just starting the to introduce

the third antibiotic and decided > since I am retired, I can live where I want.

I moved away from NY. > The cold was causing increased achiness also. Went to

Texas for a > few months, then northern Florida.> Well, it gets down into the

30's here. My mom came to live with us > as she developed Alzheimers. We've had

the heat on all winter and > am still wearing my winter coat and hat. Had

enough! Started > looking for a place in Puerto Rico. Am purchasing a 3.5 acre

spread > with a house on it and loaded with tropical fruit trees. If all goes >

well, we should be closing by May and moving in sometime in > November. The

house needs some cosmetic work which we will have > done over the summer.

Looking forward to spending next winter in the > warm climate and will give you

all an update to see if I fare better > in the heat. Meanwhile, I have cut out

all Benicar and on three > antibiotics. Still ramping up on dosages. We shall

see how it > goes. I have scleroderma, R/A & possibly MCTD according to one of >

the Rheumy's I've seen in the past.> Cheer up, spring will be here soon. Hot

showers and warm baths > sometimes helps. Take care, Dolores & Mike>> --- On

Thu, 2/12/09, Mona Goldstein <spellersoptonline (DOT) net> wrote:>> From: Mona

Goldstein <spellersoptonline (DOT) net>> Subject: Re: rheumatic Return of RA on

mino> rheumatic@grou ps.com> Date: Thursday, February 12, 2009, 9:19

PM>> Actually, I forgot-it did happen to me also. I have reactive > arthritis

and was on 200mg a day of Doxycycline for about a year, > when I realized that

it had stopped working. Unfortunately, I wasn't > very aware that I was getting

worse at first, so the illness started > to affect new joints, like my hips.

But,thanks to this group, I was > able to ask my rheumy for 200 mgs. of

Minocycline instead, and > again, within two weeks, the pain was under control

again. I have > biggest problems with my illness during the miserable cold and >

rainy(this year-snowy)NY winters and marvel how my illness can vary > day to day

according to the weather. I feel great on days when the > temperatures are above

35 degrees and the sun is out and no rain is > in the forecast.> I started out

with one generic minocycline. When the winter set in > and it wasn't as

effective anymore, I tried another generic by the > company, and it

definitely worked better. But as the weather > got worse and colder, that didn't

work either. Now, I just started > 200mg. Minocin and am hoping it'll do the

trick.> Is this common that the A/P stops working? At least there are other >

antibiotics to try.> Mona> rheumatic Return of RA on mino>> Hi Anne>> I had a similar thing

happen for me in that in 2006 I began mino> 100mg MWF and after a few months all

my pain was gone. But it came> back about a year later. I tried different doses

and tried having it> daily and it worked for a while but then the inflammation

started> again. Like you, I was in awful pain, desperate and beginning to get>

deformities. I couldn't take Celebrex or other NSAIDS because of> diverticulitis

and didn't want to take prednisone for too long> because I already have quite

bad spinal osteoarthritis. So I decided> to try Plaquenil again (which I'd had

at the beginning of treatment> before the mino and it didn't work so well), and

the combination of> the mino and plaq has done the trick! I've always refused>

methotrexate and hope I never have to use it. I still get minor> flitting pains

now and then but use paracetamol (acetaminophen)> occasionally for that.>> One

of the other people on this list said that this combination works> for her too.

Also, there was something recently about cysts forming> with some form of

mycoplasma infections and that this could> necessitate other types of drugs. Of

course, the food sensitivity> connection is important too.>> Good luck with

staying off the methotrexate and other heavier drugs.>> Ros>> [Non-text portions

of this message have been removed]>> [Non-text portions of this message have

been removed]>>>

[Guest guest]

LINDA,

have you checked for other infections in your body?

h. pillory of the stomach can trigger arthritis of the big joints.

EMAILING FOR THE GREATER GOODJoin me

rheumatic@...: beckman5@...: Fri, 13 Feb 2009

10:00:55 -0500Subject: Re: rheumatic Re: [rheumatic still aching too!

I will add my voice to this thread. Doxycycline worked marvelously and then

stopped after about a year. I went on Minocin, and it worked for about two

years. Now I went back to a conventional rheumatologist, and he has me on

methotrexate, which is better but not good enough. I don't mean to be disloyal

to the AP, but I am in so much pain (lower back, knees, wrists,ankles, elbows)

that I w ill do anything he suggests when I see him today. I'm scared! BOn

Feb 13, 2009, at 6:42 AM, mike rosner wrote:> Hi Mona, Yes, the same thing is

happening to me and also in my > hips,thighs and lower back. (But that last part

may be due to > kidney stone formation!!) I was on Mino 100mg twice a day for 18

> months and did absolutely wonderful. Was in remission when I > decided to go

on the Marshall Protocol and cut way back on the > Mino. I, too did not realize

that these aches were creeping back up > on me. Added clindamycin (tiny amount),

but the aches kept > increasing. Was told it was IP. That part wasn't true. Was

taking > lots of Benicar to help the IP. Nothing happened. Asked everyone > if

the it was truly IP or the disease. Got various answers. My new > doc told me to

cut way back on the Benicar. I did. Still achy. > Just starting the to introduce

the third antibiotic and decided > since I am retired, I can live where I want.

I moved away from NY. > The cold was causing increased achiness also. Went to

Texas for a > few months, then northern Florida.> Well, it gets down into the

30's here. My mom came to live with us > as she developed Alzheimers. We've had

the heat on all winter and > am still wearing my winter coat and hat. Had

enough! Started > looking for a place in Puerto Rico. Am purchasing a 3.5 acre

spread > with a house on it and loaded with tropical fruit trees. If all goes >

well, we should be closing by May and moving in sometime in > November. The

house needs some cosmetic work which we will have > done over the summer.

Looking forward to spending next winter in the > warm climate and will give you

all an update to see if I fare better > in the heat. Meanwhile, I have cut out

all Benicar and on three > antibiotics. Still ramping up on dosages. We shall

see how it > goes. I have scleroderma, R/A & possibly MCTD according to one of >

the Rheumy's I've seen in the past.> Cheer up, spring will be here soon. Hot

showers and warm baths > sometimes helps. Take care, Dolores & Mike>> --- On

Thu, 2/12/09, Mona Goldstein <spellers@...> wrote:>> From: Mona

Goldstein <spellers@...>> Subject: Re: rheumatic Return of RA on

mino> rheumatic > Date: Thursday, February 12, 2009, 9:19

PM>> Actually, I forgot-it did happen to me also. I have reactive > arthritis

and was on 200mg a day of Doxycycline for about a year, > when I realized that

it had stopped working. Unfortunately, I wasn't > very aware that I was getting

worse at first, so the illness started > to affect new joints, like my hips.

But,thanks to this group, I was > able to ask my rheumy for 200 mgs. of

Minocycline instead, and > again, within two weeks, the pain was under control

again. I have > biggest problems with my illness during the miserable cold and >

rainy(this year-snowy)NY winters and marvel how my illness can vary > day to day

according to the weather. I feel great on days when the > temperatures are above

35 degrees and the sun is out and no rain is > in the forecast.> I started out

with one generic minocycline. When the winter set in > and it wasn't as

effective anymore, I tried another generic by the > company, and it

definitely worked better. But as the weather > got worse and colder, that didn't

work either. Now, I just started > 200mg. Minocin and am hoping it'll do the

trick.> Is this common that the A/P stops working? At least there are other >

antibiotics to try.> Mona> rheumatic Return of RA on mino>> Hi Anne>> I had a similar thing

happen for me in that in 2006 I began mino> 100mg MWF and after a few months all

my pain was gone. But it came> back about a year later. I tried different doses

and tried having it> daily and it worked for a while but then the inflammation

started> again. Like you, I was in awful pain, desperate and beginning to get>

deformities. I couldn't take Celebrex or other NSAIDS because of> diverticulitis

and didn't want to take prednisone for too long> because I already have quite

bad spinal osteoarthritis. So I decided> to try Plaquenil again (which I'd had

at the beginning of treatment> before the mino and it didn't work so well), and

the combination of> the mino and plaq has done the trick! I've always refused>

methotrexate and hope I never have to use it. I still get minor> flitting pains

now and then but use paracetamol (acetaminophen)> occasionally for that.>> One

of the other people on this list said that this combination works> for her too.

Also, there was something recently about cysts forming> with some form of

mycoplasma infections and that this could> necessitate other types of drugs. Of

course, the food sensitivity> connection is important too.>> Good luck with

staying off the methotrexate and other heavier drugs.>> Ros>> [Non-text portions

of this message have been removed]>> [Non-text portions of this message have

been removed]>>>

[Guest guest]

, thanks. I don't know if I have been check for the stomach

bacteria and will have to look at my records.

On Feb 16, 2009, at 9:26 PM, M wrote:

>

> LINDA,

> have you checked for other infections in your body?

> h. pillory of the stomach can trigger arthritis of the big joints.

>

>

> EMAILING FOR THE GREATER GOODJoin me

>

> rheumatic@...: beckman5@...: Fri, 13

> Feb 2009 10:00:55 -0500Subject: Re: rheumatic Re: [rheumatic still

> aching too!

>

> I will add my voice to this thread. Doxycycline worked marvelously

> and then stopped after about a year. I went on Minocin, and it

> worked for about two years. Now I went back to a conventional

> rheumatologist, and he has me on methotrexate, which is better but

> not good enough. I don't mean to be disloyal to the AP, but I am in

> so much pain (lower back, knees, wrists,ankles, elbows) that I w ill

> do anything he suggests when I see him today. I'm scared! BOn

> Feb 13, 2009, at 6:42 AM, mike rosner wrote:> Hi Mona, Yes, the same

> thing is happening to me and also in my > hips,thighs and lower

> back. (But that last part may be due to > kidney stone formation!!)

> I was on Mino 100mg twice a day for 18 > months and did absolutely

> wonderful. Was in remission when I > decided to go on the Marshall

> Protocol and cut way back on the > Mino. I, too did not realize that

> these aches were creeping back up > on me. Added clindamycin (tiny

> amount), but the aches kept > increasing. Was told it was IP. That

> part wasn't true. Was taking > lots of Benicar to help the IP.

> Nothing happened. Asked everyone > if the it was truly IP or the

> disease. Got various answers. My new > doc told me to cut way back

> on the Benicar. I did. Still achy. > Just starting the to introduce

> the third antibiotic and decided > since I am retired, I can live

> where I want. I moved away from NY. > The cold was causing increased

> achiness also. Went to Texas for a > few months, then northern

> Florida.> Well, it gets down into the 30's here. My mom came to live

> with us > as she developed Alzheimers. We've had the heat on all

> winter and > am still wearing my winter coat and hat. Had enough!

> Started > looking for a place in Puerto Rico. Am purchasing a 3.5

> acre spread > with a house on it and loaded with tropical fruit

> trees. If all goes > well, we should be closing by May and moving in

> sometime in > November. The house needs some cosmetic work which we

> will have > done over the summer. Looking forward to spending next

> winter in the > warm climate and will give you all an update to see

> if I fare better > in the heat. Meanwhile, I have cut out all

> Benicar and on three > antibiotics. Still ramping up on dosages. We

> shall see how it > goes. I have scleroderma, R/A & possibly MCTD

> according to one of > the Rheumy's I've seen in the past.> Cheer up,

> spring will be here soon. Hot showers and warm baths > sometimes

> helps. Take care, Dolores & Mike>> >> From: Mona Goldstein

<spellers@...

> >> Subject: Re: rheumatic Return of RA on mino> To:rheumatic

> > Date: Thursday, February 12, 2009, 9:19 PM>> Actually, I forgot-it

> did happen to me also. I have reactive > arthritis and was on 200mg

> a day of Doxycycline for about a year, > when I realized that it had

> stopped working. Unfortunately, I wasn't > very aware that I was

> getting worse at first, so the illness started > to affect new

> joints, like my hips. But,thanks to this group, I was > able to ask

> my rheumy for 200 mgs. of Minocycline instead, and > again, within

> two weeks, the pain was under control again. I have > biggest

> problems with my illness during the miserable cold and > rainy(this

> year-snowy)NY winters and marvel how my illness can vary > day to

> day according to the weather. I feel great on days when the >

> temperatures are above 35 degrees and the sun is out and no rain is

> > in the forecast.> I started out with one generic minocycline. When

> the winter set in > and it wasn't as effective anymore, I tried

> another generic by the > company, and it definitely worked

> better. But as the weather > got worse and colder, that didn't work

> either. Now, I just started > 200mg. Minocin and am hoping it'll do

> the trick.> Is this common that the A/P stops working? At least

> there are other > antibiotics to try.> Mona> rheumatic

> Return of RA on mino>> Hi Anne>> I had a similar thing happen for me

> in that in 2006 I began mino> 100mg MWF and after a few months all

> my pain was gone. But it came> back about a year later. I tried

> different doses and tried having it> daily and it worked for a while

> but then the inflammation started> again. Like you, I was in awful

> pain, desperate and beginning to get> deformities. I couldn't take

> Celebrex or other NSAIDS because of> diverticulitis and didn't want

> to take prednisone for too long> because I already have quite bad

> spinal osteoarthritis. So I decided> to try Plaquenil again (which

> I'd had at the beginning of treatment> before the mino and it didn't

> work so well), and the combination of> the mino and plaq has done

> the trick! I've always refused> methotrexate and hope I never have

> to use it. I still get minor> flitting pains now and then but use

> paracetamol (acetaminophen)> occasionally for that.>> One of the

> other people on this list said that this combination works> for her

> too. Also, there was something recently about cysts forming> with

> some form of mycoplasma infections and that this could> necessitate

> other types of drugs. Of course, the food sensitivity> connection is

> important too.>> Good luck with staying off the methotrexate and

> other heavier drugs.>> Ros>> [Non-text portions of this message have

> been removed]>> [Non-text portions of this message have been

> removed]>>>

[Guest guest]

Hi ,

 

I am taking minocyclin MWF and Biaxin T-Th-Sa nothing on Sunday besides

supplements.

I am doing well this way. maybe not as well as I want to, but better than with 

cytoxan or Cellcept, Enbrel and Prednison that cause havoc with my body. My

rheumy never accepted the fact that I had allergic reactions to all that

medicine. I had eye hemorrhages, sinus infections and total body weakness. Sores

on hands and feet and a fungus in my nasal area. I have been on the antibiotics

for a year now. I started out with Biaxin daily plus Nizoral (anti fungal

antibiotic0 for elven months. Now I take the Biaxin and Minocylin by pulsing.

Hope this helps. If you need more info just ask.

Stay well, sometimes we have to change our meds to get going again

 

Eva

>> From: Mona Goldstein <spellers@optonline .

net>> Subject: Re:

rheumatic Return of RA on mino> rheumatic@grou ps.com> Date:

Thursday, February 12, 2009, 9:19 PM>> Actually, I forgot-it did happen to me

also. I have reactive > arthritis and was on 200mg a day of Doxycycline for

about a year, > when I realized that it had stopped working. Unfortunately, I

wasn't > very aware that I was getting worse at first, so the illness started >

to affect new joints, like my hips. But,thanks to this group, I was > able to

ask my rheumy for 200 mgs. of Minocycline instead, and > again, within two

weeks, the pain was under control again. I have > biggest problems with my

illness during the miserable cold and > rainy(this year-snowy)NY winters and

marvel how my illness can vary > day to day according to the weather. I feel

great on days when the > temperatures are above 35 degrees and the sun is out

and no rain is > in the forecast.> I started out with one generic minocycline.

When the winter set in > and it wa! sn't as

effective anymore, I tried another generic by the > company, and it

definitely worked better. But as the weather > got worse and colder, that didn't

work either. Now, I just started > 200mg. Minocin and am hoping it'll do the

trick.> Is this common that the A/P stops working? At least there are other >

antibiotics to try.> Mona> rheumatic Return of RA on mino>> Hi Anne>> I had a similar thing

happen for me in that in 2006 I began mino> 100mg MWF and after a few months all

my pain was gone. But it came> back about a year later. I tried different doses

and tried having it> daily and it worked for a while but then the inflammation

started> again. Like you, I was in awful pain, desperate and beginning to get>

deformities. I couldn't take Celebrex or other NSAIDS because of> diverticulitis

and didn't want to take

prednisone for too long> because I already have quite bad spinal

osteoarthritis. So I decided> to try Plaquenil again (which I'd had at the

beginning of treatment> before the mino and it didn't work so well), and the

combination of> the mino and plaq has done the trick! I've always refused>

methotrexate and hope I never have to use it. I still get minor> flitting pains

now and then but use paracetamol (acetaminophen) > occasionally for that.>> One

of the other people on this list said that this combination works> for her too.

Also, there was something recently about cysts forming> with some form of

mycoplasma infections and that this could> necessitate other types of drugs. Of

course, the food sensitivity> connection is important too.>> Good luck with

staying off the methotrexate and other heavier drugs.>> Ros>> [Non-text portions

of this message have been removed]>> [Non-text portions of this message have

been removed]>>! > [No n-text portions of this

message have been removed][Non- text portions of this message have been

removed]

[Guest guest]

, this msg was for you, sorry I didn't look who send the e-mail. but it's

still the same.

Regards,

Eva

>> From: Mona Goldstein <spellers@optonline .

net>> Subject: Re:

rheumatic Return of RA on mino> rheumatic@grou ps.com> Date:

Thursday, February 12, 2009, 9:19 PM>> Actually, I forgot-it did happen to me

also. I have reactive > arthritis and was on 200mg a day of Doxycycline for

about a year, > when I realized that it had stopped working. Unfortunately, I

wasn't > very aware that I was getting worse at first, so the illness started >

to affect new joints, like my hips. But,thanks to this group, I was > able to

ask my rheumy for 200 mgs. of Minocycline instead, and > again, within two

weeks, the pain was under control again. I have > biggest problems with my

illness during the miserable cold and > rainy(this year-snowy)NY winters and

marvel how my illness can vary > day to day according to the weather. I feel

great on days when the > temperatures are above 35 degrees and the sun is out

and no rain is > in the forecast.> I started out with one generic minocycline.

When the winter set in > and it wa! sn't as

effective anymore, I tried another generic by the > company, and it

definitely worked better. But as the weather > got worse and colder, that didn't

work either. Now, I just started > 200mg. Minocin and am hoping it'll do the

trick.> Is this common that the A/P stops working? At least there are other >

antibiotics to try.> Mona> rheumatic Return of RA on mino>> Hi Anne>> I had a similar thing

happen for me in that in 2006 I began mino> 100mg MWF and after a few months all

my pain was gone. But it came> back about a year later. I tried different doses

and tried having it> daily and it worked for a while but then the inflammation

started> again. Like you, I was in awful pain, desperate and beginning to get>

deformities. I couldn't take Celebrex or other NSAIDS because of> diverticulitis

and didn't want to take

prednisone for too long> because I already have quite bad spinal osteoarthritis.

So I decided> to try Plaquenil again (which I'd had at the beginning of

treatment> before the mino and it didn't work so well), and the combination of>

the mino and plaq has done the trick! I've always refused> methotrexate and hope

I never have to use it. I still get minor> flitting pains now and then but use

paracetamol (acetaminophen) > occasionally for that.>> One of the other people

on this list said that this combination works> for her too. Also, there was

something recently about cysts forming> with some form of mycoplasma infections

and that this could> necessitate other types of drugs. Of course, the food

sensitivity> connection is important too.>> Good luck with staying off the

methotrexate and other heavier drugs.>> Ros>> [Non-text portions of this message

have been removed]>>