Please help~ New and questions about MCTD

[Guest guest]

Beverly:

I feel for you. I started with Idiopathic Thrombocytopenia. Subsequently,

I was diagnosed with Lupus, R.A. with Lupus tendencies, Sjogrens,

Fibromyalgia, and then Lyme's Disease. Recently I had two root canal teeth

removed, and

I improved quite a bit. I think there are many factors to the so-called

autoimmune diseases. I found the greatest relief and improved bloodwork

through

the use of antibiotics. I deformed a great deal during the years of gold

shots, plaquenil, and methotrexeate. I do think we have genetic propensities

to succumb to these diseases. My " guru " for the rheumatic diseases is

McPherson Brown, and I suggest that you do an Internet search for his name.

By the way, I also started my illness (ITP) atter a bout of flu-like

symptoms. Then, when I was diagnosed with Lupus, they based it on a positive

ANA.

Best wishes to you,

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

Hello, I am new to the group. My name is Beverly. I just turned 40

years old this month.

The reason i am here is because I had some bloodwork done and the

nurse practioner at my dr's office called to tell me that my blood work

showed that i had MCTD. I had not ever heard of this before and she

described to me as a combination of scleroderma, Lupus and another

disease. I was very shocked when i got off the phone and even more so

when i read about it.

She reffered me to a Rheumatologist but i cant get in to see her until

may 7th. My mind is running rampant and i am just so scared!

I had gone to the office to get a copy of my blood test results. By

what i see is that the " ANA w/ reflex if positive antinuclear

antibodies direct " were HIGH (236. Below that it says RNP antibodies

were high (236). There are alot other initials but none other marked as

high. Below this is it says aunto antibody and disease association. It

has percentages catagory, condition catagory. It also said my

sedimentation rate-westergren was high (26). My vitamin b12 was low at

190.

The reason that i went to the dr was because about a month and halg ago

i was having symptoms of a UTI. The dr's office called me out Cipro.

By the 3rd doseof Cipro i could barely get out of bed. My muscles,

joints and body hurt all over! I called the dr exchange on a sunday and

the dr on call said to stop taking the cipro that i was having a

reaction to it. Ok, so i went in to the dr that Monday and the swelling

was still visible in my hands and ankles and face. I was also sooo

exhausted feeling.

The nurse practictioner sent me home with another antibiotic

(macrodantin). I didnt take it as i was scared i would have another

raction. A week or so later, i was still having symptoms, swelling,

body aches, joint pain, muscle tenderness. I had told her that my dad

had RA and could i have this? She ordered blood work and called a few

days alter to tell me the RA was negative but that i tested positve for

MCTD and that i needed to see a specialist.

Prior to the UTI there was flu/virus's going around my family. Body

aches, fever, fatigue. I had it pretty bad but it did get better. I

didnt think anything about it as my husband and daughters also had it.

I am just beside myself. I just dont know what to think. Do i have a

terminal disease? Am i going to die? I dont know what to do!?

I know my first course of action if the rhuematologist. But,in the

meantime these 2 weeks of waiting is soooo hard.

Any helps would be soooooo appreciated! Sorry so long!

Beverly

[Guest guest]

Beverly,

I am so sorry. I know how you feel as 2 years ago I felt the same way. It is so

very hard at first....your whole life changes dramatically and I wish I had a

more upbeat message for you. I am still struggling, I guess the only thing I can

offer is, you do get used to your new " normal " . You must read up all you can as

my experience has been the docs are stingy with their information. You are not

alone, these support groups can be so much help and also probably your dad as he

has had ra so knows what you are dealing with. Others here can help you better I

just couldn't help but feel so bad for you and wanted to respond.

good luck,

Sue

rheumatic Please help~ New and questions about MCTD

Hello, I am new to the group. My name is Beverly. I just turned 40

years old this month.

The reason i am here is because I had some bloodwork done and the

nurse practioner at my dr's office called to tell me that my blood work

showed that i had MCTD. I had not ever heard of this before and she

described to me as a combination of scleroderma, Lupus and another

disease. I was very shocked when i got off the phone and even more so

when i read about it.

She reffered me to a Rheumatologist but i cant get in to see her until

may 7th. My mind is running rampant and i am just so scared!

I had gone to the office to get a copy of my blood test results. By

what i see is that the " ANA w/ reflex if positive antinuclear

antibodies direct " were HIGH (236. Below that it says RNP antibodies

were high (236). There are alot other initials but none other marked as

high. Below this is it says aunto antibody and disease association. It

has percentages catagory, condition catagory. It also said my

sedimentation rate-westergren was high (26). My vitamin b12 was low at

190.

The reason that i went to the dr was because about a month and halg ago

i was having symptoms of a UTI. The dr's office called me out Cipro.

By the 3rd doseof Cipro i could barely get out of bed. My muscles,

joints and body hurt all over! I called the dr exchange on a sunday and

the dr on call said to stop taking the cipro that i was having a

reaction to it. Ok, so i went in to the dr that Monday and the swelling

was still visible in my hands and ankles and face. I was also sooo

exhausted feeling.

The nurse practictioner sent me home with another antibiotic

(macrodantin). I didnt take it as i was scared i would have another

raction. A week or so later, i was still having symptoms, swelling,

body aches, joint pain, muscle tenderness. I had told her that my dad

had RA and could i have this? She ordered blood work and called a few

days alter to tell me the RA was negative but that i tested positve for

MCTD and that i needed to see a specialist.

Prior to the UTI there was flu/virus's going around my family. Body

aches, fever, fatigue. I had it pretty bad but it did get better. I

didnt think anything about it as my husband and daughters also had it.

I am just beside myself. I just dont know what to think. Do i have a

terminal disease? Am i going to die? I dont know what to do!?

I know my first course of action if the rhuematologist. But,in the

meantime these 2 weeks of waiting is soooo hard.

Any helps would be soooooo appreciated! Sorry so long!

Beverly

[Guest guest]

Hi Beverly,

You got some very good advice already. I just want to ad that the fact you

go worse after taking the antibiotic is a huge tip off, that AP may be just

the right course for you. When you read about the antibiotic protocol

on www.rheumatic.org look for the description of the Jarish Herxheimer

effect. When we start the AP, many of us get worse for a while, probably

because of die-off of critters. Although the pain levels go up, we see it

as a hopeful sign that the approach is working. We also adjust the dosage

to avoid " herxing " too much. When you get ready to start AP, consider

starting with a low dose of the antibiotic that gave you the reaction.

Take care,

Ute

[Guest guest]

I am with Sue.....you are not alone. I know how scary this is for you. As Sue

said....read as much info as you can. You are welcome to contact me personally.

(Hi Sue.....hope you are doing okay.)