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Re: Complications
Mar 13, 2007
Ryebeach and all my other lymie friends.
Thanks for the encouragement.

I can't take pain meds. Doesn't matter what I try it will send my chest into spasms and I mean horrible spasms that lasts for hours. Over the years I have tried many, each one did this. I wish I could take them. Tylenol and advil is all I can take. The baclofen I am on now seems to help some. It is for seizures.

I tried the IV rounds last year. Due to blood clots, I had to stop the IV and go to orals. My problem is that I can't take much without it affecting my liver. Have to stop and start never quite getting enough in to do the job. Not able to take more than 2 or 3 treatments a week. This last time, had to stop due to high liver functions.

I was diagnosed last week by the neuro with demylinating disease of cns from lyme disease.

Found out yesterday that the neurologist did some kind of blood test that checks the muscle damage. Results should have been in the hundreds but mine were in the three hundreds. Also I had a positive ANA test. Every red blood cell test they did was to high. The nurse said the neuro wanted to see me asap. She was going to call and get my MRI set up (insurance has been the hold-up) and call me back.

I go back to the lyme dr end of this month after they have gotten all these other tests done.

I'm trying to stay positive, but this is tough.

Prayers....Marsha
Re: Complications
Mar 15, 2007
Tronni
What did the neuro say? You proposed 4 things. I agree with 3. The 4th is stretching, can't do that. The way my muscles are hurting, I cannot stretch. If I even to try to stretch when I wake in the morning, they will tie in a knot. It may have something to do with the muscle damage test they did. I will find out more Monday.

Jojo
How you doing? It is really hard to hold on right now, but giving up is not an option. So I just hold on tighter and pray harder.

I did go have an MRI yesterday of my brain. I have it here, but am not sure how to read. I know before the neuro showed me white spots that were lesions. But that was one picture on one large film. This has 12 on one film, so they are small. I do see alot of small white dots. But I won't jump to conclusions. I'll wait until I see Dr Kraft on Monday. I know a positive ANA is a definite sign of autoimmune disease. Mine was positive.

I ache and every muscle hurts. My tremors have almost stopped. Still have my headache. My lyme Dr knows whats going on, but he is on hold until I get to the bottom of this.

Has anyone ever had a positive for autoimmune disease with lyme? I think the lyme has caused my immune system to start fighting my own body. But from what I understand, there is no cure, I just have to pray that my immune system will straighten itself out.

Prayers....Marsha
Re: Complications
Mar 15, 2007
[COLOR="Purple"][B]Marsha....I just want you to know that my test ALWAYS showed positive on the ANA test...and I AM SOOOO MUCH BETTER! So YES there is hope...

Remember Lyme is an immatator disease! I had every darn doctor that I went to tell me I had this or that...and what it all boiled down to is that I had Lyme and Chlamydia Pnuemoniae (which I am being treated for now) and Epstein Barr Cytomeglovirus and the usually herpes....SOOOO I am on Valtrex for those now too.

All I am trying to say is I know you are worried and you feel like POOP! The white matter on your MRI I have heard other lymies having this...think it is all par for the course....

I am wondering do you think you could of been reinfected here lately? I remember you were doing so well around Christmas. and then Bham you've got those headaches and muscle spasms...BAD again...just wondering about that....

Hold on tight to that rope...:angel:

So Glad you have your Hubby and family standing by you...that helps a little...

Let us know how things go for you on Monday....

Hugs to you!

:D

[/B][/COLOR]
Re: Complications
Mar 17, 2007
[QUOTE=Pearlscale;2854585]Ryebeach and all my other lymie friends.
Thanks for the encouragement.

I can't take pain meds. Doesn't matter what I try it will send my chest into spasms and I mean horrible spasms that lasts for hours. Over the years I have tried many, each one did this. I wish I could take them. Tylenol and advil is all I can take. The baclofen I am on now seems to help some. It is for seizures.

I tried the IV rounds last year. Due to blood clots, I had to stop the IV and go to orals. My problem is that I can't take much without it affecting my liver. Have to stop and start never quite getting enough in to do the job. Not able to take more than 2 or 3 treatments a week. This last time, had to stop due to high liver functions.

I was diagnosed last week by the neuro with demylinating disease of cns from lyme disease.

Found out yesterday that the neurologist did some kind of blood test that checks the muscle damage. Results should have been in the hundreds but mine were in the three hundreds. Also I had a positive ANA test. Every red blood cell test they did was to high. The nurse said the neuro wanted to see me asap. She was going to call and get my MRI set up (insurance has been the hold-up) and call me back.

I go back to the lyme dr end of this month after they have gotten all these other tests done.

I'm trying to stay positive, but this is tough.

Prayers....Marsha[/QUOTE]

Marsha,

I am not going through half the things you are going through but I do want you to know this. I too had an abnormal ANA test last year. That scared me to death. My liver enzymes were slightly high too. They thought I had an auto immune disorder. I've done two ANA tests since then, one just a few weeks ago and they were negative. Sometimes medications can cause you ANA to be positive/abnormal and sometimes healthy people have abnormal/positive ANA tests. I'm just trying to give you a little hope hun. Hang in there:)

Chantel
Re: Complications
Mar 18, 2007
[QUOTE=Pearlscale;2860030]Tronni
What did the neuro say? You proposed 4 things. I agree with 3. The 4th is stretching, can't do that. The way my muscles are hurting, I cannot stretch. If I even to try to stretch when I wake in the morning, they will tie in a knot. It may have something to do with the muscle damage test they did. I will find out more Monday.

Jojo
How you doing? It is really hard to hold on right now, but giving up is not an option. So I just hold on tighter and pray harder.

I did go have an MRI yesterday of my brain. I have it here, but am not sure how to read. I know before the neuro showed me white spots that were lesions. But that was one picture on one large film. This has 12 on one film, so they are small. I do see alot of small white dots. But I won't jump to conclusions. I'll wait until I see Dr Kraft on Monday. I know a positive ANA is a definite sign of autoimmune disease. Mine was positive.

I ache and every muscle hurts. My tremors have almost stopped. Still have my headache. My lyme Dr knows whats going on, but he is on hold until I get to the bottom of this.

Has anyone ever had a positive for autoimmune disease with lyme? I think the lyme has caused my immune system to start fighting my own body. But from what I understand, there is no cure, I just have to pray that my immune system will straighten itself out.

Prayers....Marsha[/QUOTE]

Marsha,

I've been doing vaccine immunization shots. Have you ever heard of it? They give it to people with MS, Chronic Fatigue and Fibro. It is supposed to boost your immune system and help you feel better. It helps with the brain fog too. I've only been doing it for a week so I can't tell you much but the doctor I see has like a 90% success rate with people getting better. Maybe ask about it where you live. I will definitely keep all of you posted on my progress. If I can help someone feel better, I will.

Hugs,
Chantel
Re: Complications
Apr 22, 2007
Guys or (Girls)
I was just coming on to pull up this thread and ask how everyone was. Hadn't heard lately. Seems like our lyme bacteria are on the same wavelink. :rolleyes:

I had a bad fall yesterday. As if my body wasn't in enough pain. Waiting to see if my lt arm bone (between elbow and wrist) is cracked. Its kind of hard to type this in a spint. I tripped over a stepping stone in my backyard. I was dizzy all day yesterday. My equalibreium (sp) just wasn't right. Still not. It happened so fast, so not sure if it was from being a little off kilter. When I fell, I hit the side of our castlerock pond which is about 18" above ground. My lt arm hit it rock edge and the rest of me either hit the ground or the castlerock. I am pretty achy. Scratched and bruised.

Just to let you know, I ask for a copy of my MRI report from a month ago. Got it this week. It said, I have 9+ lesions (it told where) and that 2 were demylinating with contrast. (only had 3 when MRI done 4 yrs ago) I meet the MacDonald Criteria for demylinating disease (MS) My neuro thinks the report is wrong and he also thinks that the demylinating is from lyme. So I have an appt in June for a second opinion. I see my LLMD tomorrow. I plan to take the film with me for him to see also. I'll show him all my file. I have lab reports, MRI report, films, and ANA results (positive) which is up from 3 yrs ago. Not sure how it will compare to his (if he did one)

Will let you know what I find out. Got to stop, arm hurting.

Hope others will chime in with report. And Blues, think positive.

Prayers.....Marsha





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