Re: I'm New Here...Just Diagnosed

September 4, 2006

Hi Hollie, I started with CFS also in 1986. It affected my liver. Ran low

grade fevers for a year, but went as high as 103. Eventually, I moved back to

the mainland from Hawaii and a doc put me on acyclovir for two weeks of

treatment and repeated it. I felt much better. I was positive for the Epstein

Barr virus and the cytomegalo virus. I kept getting episodes of fatigue for a

few years more, but each one was milder and my enlarged liver eventually went

back to normal. Then in the 90's my heart began to give me some electrical

conduction problems. I was given medication and that eased off.I then developed

diabetes. More meds added to control that. Then a few years back, I was put on

Mevacor (a statin) for high cholesterol and began to ache all over. They did

all sorts of blood tests and couldn't find any reason. My statins were changed,

thinking maybe it caused lactic acid buildup. No help there. I went for aqua

therapy and physical therapy and continued to

have more & more muscle pain. Then My neck & shoulder became frozen. The only

relief from the pain was hot showers. I was the cleanest person in town. I

lived under the shower and slept with the heating pad & Ben Gay. Finally, I got

shots into the shoulder joint and miraculously the pain went away, but the rest

of the muscles were still in terrible pain and one day, I couldn't take it any

more. I was in the process of moving my mom to Florida and begged to be taken

to the ER where upon a routine Xray, they admitted me with pneumonia. Two days

later after an MRI and many blood tests, the diagnosis was that I had pulmonary

fibrosis due to unknown causes and was discharged. I spent the next 4-5 months

in bed coughing, aching, and lost weight rapidly due to diarrhea and vomiting.

I lost so much weight that my husband thought I had cancer. Altho' I started

feeling a little better, I looked like I was dying. My skin got hard & shiny.

Tiny white bumps appeared on the skin

and could be scratched off. They were calcifications.( Little white stones) I

went back home to New York and started my round of docs trying to get a

diagnosis. Finally after two hospital stays, I was diagnosed with Scleroderma &

R/A. Resigned to the fact that I was turning into stone and my internal organs

were being damaged, I posted on the Scleroderma Foundation and a sweet angel

answered and told me about Antibiotic therapy. I went on it a month later and

refused all other meds like MTX, etc. I did such a quick turnaround it was

amazing. The pain went away, the raynauds went too, skin got soft and the

pebbles stopped forming. I put back half of the pounds I lost, and by adding

iron & protein supplements the anemia also disappeared as did the nausea,

vomiting and diarrhea. I had more energy and less fatigue. But I did develop an

annoying itch and fingers got thicker. Had to remove my wedding band &

engagement ring that I wore for 30 years. But generally, I was a

happy camper and early this summer, we took a trip up to Canada to personally

hug and thank my angel. We developed a kinship and we each have a new family.

It was wonderful. Then month # 8. My cardiologist insisted that I take an

echocardiogram stress test. In the middle of the test, I developed Pulmonary

Hypertension and she had to stop the test. That is serious. It was verified by

my pulmonologist. But she was also surprised to note that my overall signs of

Pulmonary fibrosis were reversing. Nevertheless, I developed cardiac

disrythmia's and that's where I stand now. In spite of having added calcium

channel blockers, Ace inhibitors and several other heart meds, I continue with

on & off again disrythmia's. Last week I was on a heart monitor for 72 hours,

now I will go on an event monitor. Each time I feel my heart rythms changing

again, I push a button and it records. I find myself more tired when that is

happening and I lie down. I'm still on the Minocin

100 mg twice a day, ninth month. and when I get all my results together I will

call my doc in Boston and fax them to him. I don't know why, but everytime I

have a crisis. It is usually Christmas Eve, 4th of July or Labor Day weekend

and everybody is on vacation or out of town. While the minocin is definitely

reversing the symptoms of S/D and R/A, the micoplasmas are busy running around

my body still attacking internal organs. The way I see it, it is a race against

time. Will the Minocin stop or reverse the heart damage before the mycoplasmas

destroy it? Only God knows. I notice that some people go on IV antibiotic

drugs as well. I may have to go that route too. Once the results are in, we

shall gather the info and I will then discuss any changes or add on's to my

regimen. Meanwhile, I continue to refuse the Meth and related drugs and will

continue the antibiotics. I've got nothing to lose. They say my condition is

terminal, but so is life. My advice is to

start on A/P and see what it does for you. BTW, these diagnoses tend to change

names periodically. You can develop more than one and then they call it MCTD.

(Mixed Connective Tissue Disorder) That label was added to me last week. BTW,

the answer to your question on how to find a doc that will give you the

antibiotic. Don't ask, insist. If you meet resistance, find another doc and do

that till you get what you want. Tell them your health is your choice and stand

your ground. You pay them, they work for you. Not the other way round. Good

luck with your journey. Stay with the groups and share. You will learn a lot.

Dolores

Hollie <rosey9932000@...> wrote: And I'm happy to see there could be

another way to resolve this

disease without the scarey meds like MTX and Biologics.

I read a bit about the AP on the website, and some of your posts.

I wonder how difficult it will be to find a doctor willing to do

the AP method, I live near Sacramento, CA.

I got a groin pain last February which eventually landed me in a

walker. I was told by Ortho Surgeons I needed a hip replacement.

One Ortho Surgeon gave me a cortisone shot to the hip and all this

fluid came out...later analyzed as PA.

I don't have aches and pains, nor a history of them, just an eaten

up hip(s). Sometimes I wonder if I got the right diagnosis since

you'all say you have so much pain.

This came on VERY suddenly, right after a bad reaction to Crestor, a

cholesteral med. While on Crestor I felt like I was 110 years old,

ached everywhere, couldn't bend...and I'm a yoga fanatic, very

flexible.

The Rheumotologist will probably want to put me on Methotrexate

which I find very scarey, especially after my Crestor experience.

Currently I can't even get in for an appointment, maybe a blessing.

I also have Chronic Fatigue Syndrome (14 years) which many believe

is caused by mycroplasmic (sp?) things. Many CFS/FM people

are " herxing " . I wonder if these are somehow connected?

Any info you can give me appreciated.

Thanks,

Hollie

To unsubscribe, email: rheumatic-unsubscribeegroups

September 4, 2006

Wow Dolores, what a medical history. I can hardly keep track of

what you went through.

I guess the question is, how is your CFS now? It's not known to go

away or be cured.

I would also like to refuse MTX but there are people the AP hasn't

helped and my hip joint has been badly attacked. So much so that I

should be pretty aggressive probably treating it soon.

It sounds like a lot of your problems followed the statin med you

took? I had the same " ache all over " problems when I took the

statin, Crestor, and now PA. Do you think, as I do, that these are

connected...the statin causes other medical problems?

Did you have to go to Canada for treatment?

So, the bottom line is that the antibiotic therapy worked for you?

Hollie

> Hi Hollie, I started with CFS also in 1986. It affected my

liver. Ran low grade fevers for a year, but went as high as 103.

Eventually, I moved back to the mainland from Hawaii and a doc put

me on acyclovir for two weeks of treatment and repeated it. I felt

much better. I was positive for the Epstein Barr virus and the

cytomegalo virus. I kept getting episodes of fatigue for a few years

more, but each one was milder and my enlarged liver eventually went

back to normal. Then in the 90's my heart began to give me some

electrical conduction problems. I was given medication and that

eased off.I then developed diabetes. More meds added to control

that. Then a few years back, I was put on Mevacor (a statin) for

high cholesterol and began to ache all over. They did all sorts of

blood tests and couldn't find any reason. My statins were changed,

thinking maybe it caused lactic acid buildup. No help there. I

went for aqua therapy and physical therapy and continued to

> have more & more muscle pain. Then My neck & shoulder became

frozen. The only relief from the pain was hot showers. I was the

cleanest person in town. I lived under the shower and slept with

the heating pad & Ben Gay. Finally, I got shots into the shoulder

joint and miraculously the pain went away, but the rest of the

muscles were still in terrible pain and one day, I couldn't take it

any more. I was in the process of moving my mom to Florida and

begged to be taken to the ER where upon a routine Xray, they

admitted me with pneumonia. Two days later after an MRI and many

blood tests, the diagnosis was that I had pulmonary fibrosis due to

unknown causes and was discharged. I spent the next 4-5 months in

bed coughing, aching, and lost weight rapidly due to diarrhea and

vomiting. I lost so much weight that my husband thought I had

cancer. Altho' I started feeling a little better, I looked like I

was dying. My skin got hard & shiny. Tiny white bumps appeared on

the skin

> and could be scratched off. They were calcifications.( Little

white stones) I went back home to New York and started my round of

docs trying to get a diagnosis. Finally after two hospital stays, I

was diagnosed with Scleroderma & R/A. Resigned to the fact that I

was turning into stone and my internal organs were being damaged, I

posted on the Scleroderma Foundation and a sweet angel answered and

told me about Antibiotic therapy. I went on it a month later and

refused all other meds like MTX, etc. I did such a quick turnaround

it was amazing. The pain went away, the raynauds went too, skin got

soft and the pebbles stopped forming. I put back half of the

pounds I lost, and by adding iron & protein supplements the anemia

also disappeared as did the nausea, vomiting and diarrhea. I had

more energy and less fatigue. But I did develop an annoying itch and

fingers got thicker. Had to remove my wedding band & engagement

ring that I wore for 30 years. But generally, I was a

> happy camper and early this summer, we took a trip up to Canada

to personally hug and thank my angel. We developed a kinship and we

each have a new family. It was wonderful. Then month # 8. My

cardiologist insisted that I take an echocardiogram stress test. In

the middle of the test, I developed Pulmonary Hypertension and she

had to stop the test. That is serious. It was verified by my

pulmonologist. But she was also surprised to note that my overall

signs of Pulmonary fibrosis were reversing. Nevertheless, I

developed cardiac disrythmia's and that's where I stand now. In

spite of having added calcium channel blockers, Ace inhibitors and

several other heart meds, I continue with on & off again

disrythmia's. Last week I was on a heart monitor for 72 hours, now

I will go on an event monitor. Each time I feel my heart rythms

changing again, I push a button and it records. I find myself more

tired when that is happening and I lie down. I'm still on the

Minocin

> 100 mg twice a day, ninth month. and when I get all my results

together I will call my doc in Boston and fax them to him. I don't

know why, but everytime I have a crisis. It is usually Christmas

Eve, 4th of July or Labor Day weekend and everybody is on vacation

or out of town. While the minocin is definitely reversing the

symptoms of S/D and R/A, the micoplasmas are busy running around my

body still attacking internal organs. The way I see it, it is a

race against time. Will the Minocin stop or reverse the heart

damage before the mycoplasmas destroy it? Only God knows. I notice

that some people go on IV antibiotic drugs as well. I may have to

go that route too. Once the results are in, we shall gather the

info and I will then discuss any changes or add on's to my

regimen. Meanwhile, I continue to refuse the Meth and related drugs

and will continue the antibiotics. I've got nothing to lose. They

say my condition is terminal, but so is life. My advice is to

> start on A/P and see what it does for you. BTW, these diagnoses

tend to change names periodically. You can develop more than one

and then they call it MCTD. (Mixed Connective Tissue Disorder)

That label was added to me last week. BTW, the answer to your

question on how to find a doc that will give you the antibiotic.

Don't ask, insist. If you meet resistance, find another doc and do

that till you get what you want. Tell them your health is your

choice and stand your ground. You pay them, they work for you. Not

the other way round. Good luck with your journey. Stay with the

groups and share. You will learn a lot. Dolores

>

> Hollie <rosey9932000@...> wrote: And I'm happy to see there

could be another way to resolve this

> disease without the scarey meds like MTX and Biologics.

>

> I read a bit about the AP on the website, and some of your posts.

> I wonder how difficult it will be to find a doctor willing to do

> the AP method, I live near Sacramento, CA.

>

> I got a groin pain last February which eventually landed me in a

> walker. I was told by Ortho Surgeons I needed a hip replacement.

> One Ortho Surgeon gave me a cortisone shot to the hip and all this

> fluid came out...later analyzed as PA.

>

> I don't have aches and pains, nor a history of them, just an eaten

> up hip(s). Sometimes I wonder if I got the right diagnosis since

> you'all say you have so much pain.

>

> This came on VERY suddenly, right after a bad reaction to Crestor,

a

> cholesteral med. While on Crestor I felt like I was 110 years old,

> ached everywhere, couldn't bend...and I'm a yoga fanatic, very

> flexible.

>

> The Rheumotologist will probably want to put me on Methotrexate

> which I find very scarey, especially after my Crestor experience.

> Currently I can't even get in for an appointment, maybe a blessing.

>

> I also have Chronic Fatigue Syndrome (14 years) which many believe

> is caused by mycroplasmic (sp?) things. Many CFS/FM people

> are " herxing " . I wonder if these are somehow connected?

>

> Any info you can give me appreciated.

>

> Thanks,

>

> Hollie

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

September 4, 2006

I hear Dr. is great . He is a rheumatologist in Sacramento. Good luck

rheumatic I'm New Here...Just Diagnosed

And I'm happy to see there could be another way to resolve this

disease without the scarey meds like MTX and Biologics.

I read a bit about the AP on the website, and some of your posts.

I wonder how difficult it will be to find a doctor willing to do

the AP method, I live near Sacramento, CA.

I got a groin pain last February which eventually landed me in a

walker. I was told by Ortho Surgeons I needed a hip replacement.

One Ortho Surgeon gave me a cortisone shot to the hip and all this

fluid came out...later analyzed as PA.

I don't have aches and pains, nor a history of them, just an eaten

up hip(s). Sometimes I wonder if I got the right diagnosis since

you'all say you have so much pain.

This came on VERY suddenly, right after a bad reaction to Crestor, a

cholesteral med. While on Crestor I felt like I was 110 years old,

ached everywhere, couldn't bend...and I'm a yoga fanatic, very

flexible.

The Rheumotologist will probably want to put me on Methotrexate

which I find very scarey, especially after my Crestor experience.

Currently I can't even get in for an appointment, maybe a blessing.

I also have Chronic Fatigue Syndrome (14 years) which many believe

is caused by mycroplasmic (sp?) things. Many CFS/FM people

are " herxing " . I wonder if these are somehow connected?

Any info you can give me appreciated.

Thanks,

Hollie

September 5, 2006

Hi Holley, This is Dolores. The CFS was probably the reason I developed S/D &

R/A. I think the antiviral meds they gave me back then helped my natural immune

system to get me into remission. I didn't know about antibiotic therapy back

then. Had I continued to be treated, I may have gotten to the mycoplasmas

sooner. But it took another 20 yrs. to find that out. The doc told me

definitely the CFS & the S/D & the R/A are related. So, that's why I am on

minocin (not the generic) and hoping to go back into remission again. Can they

give you some prednisone shots where it hurts. It's short acting and a dose or

two will not do long term damage as the MTX will? Do more research and get the

books by Henry Scammell. They explain a lot and are a big help to me. Try the

local library and if not, buy them, new or used (used is cheaper) but they are

not expensive. $10 or $15 at the most. I got mine at amazon.com. Good luck!

Dolores

Hollie <rosey9932000@...> wrote: Wow Dolores, what a medical history. I

can hardly keep track of