Re: Lyme Disease/autoimmune diseases-carol, others

September 3, 2003

Carol and anyone else,

I know a good bit about Lyme. My rheumy has always thought I have it. Though the blood test and spinal taps come back negative. She wants me to do this one test this urine test where you do it for 6 weeks (take it once a week for 6 wks) and it tests for lyme that way. She says it finds the more hard to find chronic lyme infections. But my insurance is being were about it. I dont think I have lyme. She thinks I do cuz of arthritis and rashes and other skin probs and then also because of my seizures and other neuro probs and she said that the dysautonomia, fatigue, and alot of other things can happen with lyme. She doesnt know alot about mito (I dont have a clear diagnosis). My rheumy first diagnosed me as having fibromyalgia when i was 18 after seeing I had been diagnosed with CFS and possible JRA when I was child. She said they all intermixed. Then she said She thought i had lupus and the fibro was secondary a year later. She started looking into all sorts of autoimmune probs then. This was 5 yrs ago. About 3 yrs ago she finally said it was mixed connective tissue disease meaning it was a mixture of several autoimmune diseases/connective tissue diseases. Then she started saying though she believe that lyme was the cause of this though. My mom was just diagnosed with sarcoidosis last yr which is another autoimmune disease. Now my rheumy thinks that my mom has this due to lyme and that my mom actually passed lyme to me in the womb (cuz all my probs started soon after birth). I do not believe this. I dont think I have lyme, though i havent totally ruled it out. I just think that lyme is very similar to both autoimmune probs and mito. What I believe is that I was born with mito and it was what started all my probs. i became very symptomatic though in my mid-teens. i believe that either an autoimmune disease or lyme caused me to get worse, not sure which. but i know there are many people with autoimmune diseases in my family. I just believe I have to chronic illnesses going on cuz it seems I have something other than mito cuz of some of my symptoms and the autoimmune explaination seems to be the best. It seems autoimmune diseases go alot with mito though. Also carol, you said in an earlier post your son was diagnosed with crohns, yet another autoimmune disease, doesnt suprise me. I'm sorry to hear that though. How's he doing now? Oh, you also mentioned probs with liver enzymes being elevated, mine are alot too. Drs dont know why other than possibly meds. But that can be causing the itching for sure. I also have my hair falling out alot too. I can relate to alot of the symptoms you listed in both your posts. Even the word mix ups and all. Oh, I know I didnt say much about lyme disease treatment and what not. my Rheumy also talks about that. that once I get the diagnosis (shes so sure about it) that it will be long term antibiotics which how long ive had it she thinks- that i would be on IV antibiotics for a few weeks then on pills for several months. Anyways, if you wanna talk more about it please let me know. Anyways, I gotta get going. I wanted to post one more post on an update and then I must try and sleep- been up all night in pain. Hope you are doing well.

take care,

Adrienne

September 3, 2003

Carol and anyone else,

I know a good bit about Lyme. My rheumy has always thought I have it. Though the blood test and spinal taps come back negative. She wants me to do this one test this urine test where you do it for 6 weeks (take it once a week for 6 wks) and it tests for lyme that way. She says it finds the more hard to find chronic lyme infections. But my insurance is being were about it. I dont think I have lyme. She thinks I do cuz of arthritis and rashes and other skin probs and then also because of my seizures and other neuro probs and she said that the dysautonomia, fatigue, and alot of other things can happen with lyme. She doesnt know alot about mito (I dont have a clear diagnosis). My rheumy first diagnosed me as having fibromyalgia when i was 18 after seeing I had been diagnosed with CFS and possible JRA when I was child. She said they all intermixed. Then she said She thought i had lupus and the fibro was secondary a year later. She started looking into all sorts of autoimmune probs then. This was 5 yrs ago. About 3 yrs ago she finally said it was mixed connective tissue disease meaning it was a mixture of several autoimmune diseases/connective tissue diseases. Then she started saying though she believe that lyme was the cause of this though. My mom was just diagnosed with sarcoidosis last yr which is another autoimmune disease. Now my rheumy thinks that my mom has this due to lyme and that my mom actually passed lyme to me in the womb (cuz all my probs started soon after birth). I do not believe this. I dont think I have lyme, though i havent totally ruled it out. I just think that lyme is very similar to both autoimmune probs and mito. What I believe is that I was born with mito and it was what started all my probs. i became very symptomatic though in my mid-teens. i believe that either an autoimmune disease or lyme caused me to get worse, not sure which. but i know there are many people with autoimmune diseases in my family. I just believe I have to chronic illnesses going on cuz it seems I have something other than mito cuz of some of my symptoms and the autoimmune explaination seems to be the best. It seems autoimmune diseases go alot with mito though. Also carol, you said in an earlier post your son was diagnosed with crohns, yet another autoimmune disease, doesnt suprise me. I'm sorry to hear that though. How's he doing now? Oh, you also mentioned probs with liver enzymes being elevated, mine are alot too. Drs dont know why other than possibly meds. But that can be causing the itching for sure. I also have my hair falling out alot too. I can relate to alot of the symptoms you listed in both your posts. Even the word mix ups and all. Oh, I know I didnt say much about lyme disease treatment and what not. my Rheumy also talks about that. that once I get the diagnosis (shes so sure about it) that it will be long term antibiotics which how long ive had it she thinks- that i would be on IV antibiotics for a few weeks then on pills for several months. Anyways, if you wanna talk more about it please let me know. Anyways, I gotta get going. I wanted to post one more post on an update and then I must try and sleep- been up all night in pain. Hope you are doing well.

take care,

Adrienne

September 4, 2003

Carol and Adrienne

Many of the symptoms you have mentioned can also be due to thyroid problems.

Have they ruled this out?

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Thu, 4 Sep 2003 05:57:03 EDT

> To:

> Subject: Re: Lyme Disease/autoimmune diseases-carol, others

>

> Carol and anyone else,

> I know a good bit about Lyme. My rheumy has always thought I have it. Though

> the blood test and spinal taps come back negative. She wants me to do this one

> test this urine test where you do it for 6 weeks (take it once a week for 6

> wks) and it tests for lyme that way. She says it finds the more hard to find

> chronic lyme infections. But my insurance is being were about it. I dont think

> I

> have lyme. She thinks I do cuz of arthritis and rashes and other skin probs

> and then also because of my seizures and other neuro probs and she said that

> the dysautonomia, fatigue, and alot of other things can happen with lyme. She

> doesnt know alot about mito (I dont have a clear diagnosis). My rheumy first

> diagnosed me as having fibromyalgia when i was 18 after seeing I had been

> diagnosed with CFS and possible JRA when I was child. She said they all

> intermixed.

> Then she said She thought i had lupus and the fibro was secondary a year

> later.

> She started looking into all sorts of autoimmune probs then. This was 5 yrs

> ago. About 3 yrs ago she finally said it was mixed connective tissue disease

> meaning it was a mixture of several autoimmune diseases/connective tissue

> diseases. Then she started saying though she believe that lyme was the cause

> of this

> though. My mom was just diagnosed with sarcoidosis last yr which is another

> autoimmune disease. Now my rheumy thinks that my mom has this due to lyme and

> that my mom actually passed lyme to me in the womb (cuz all my probs started

> soon after birth). I do not believe this. I dont think I have lyme, though i

> havent totally ruled it out. I just think that lyme is very similar to both

> autoimmune probs and mito. What I believe is that I was born with mito and it

> was

> what started all my probs. i became very symptomatic though in my mid-teens. i

> believe that either an autoimmune disease or lyme caused me to get worse, not

> sure which. but i know there are many people with autoimmune diseases in my

> family. I just believe I have to chronic illnesses going on cuz it seems I

> have

> something other than mito cuz of some of my symptoms and the autoimmune

> explaination seems to be the best. It seems autoimmune diseases go alot with

> mito

> though. Also carol, you said in an earlier post your son was diagnosed with

> crohns, yet another autoimmune disease, doesnt suprise me. I'm sorry to hear

> that

> though. How's he doing now? Oh, you also mentioned probs with liver enzymes

> being elevated, mine are alot too. Drs dont know why other than possibly meds.

> But that can be causing the itching for sure. I also have my hair falling out

> alot too. I can relate to alot of the symptoms you listed in both your posts.

> Even the word mix ups and all. Oh, I know I didnt say much about lyme disease

> treatment and what not. my Rheumy also talks about that. that once I get the

> diagnosis (shes so sure about it) that it will be long term antibiotics which

> how long ive had it she thinks- that i would be on IV antibiotics for a few

> weeks then on pills for several months. Anyways, if you wanna talk more about

> it

> please let me know. Anyways, I gotta get going. I wanted to post one more post

> on an update and then I must try and sleep- been up all night in pain. Hope

> you are doing well.

> take care,

> Adrienne

>

September 4, 2003