I haven't been on here in months. It has been a very long year.
Diagnosed 11/29/10, 13 bands reactive, bartonella and rock mnt coinfections.
I did 2 months doxy and 5 weeks iv cef.
On the 5th week of cef I had an echo done of my heart. Come to find out I needed valve replacement.
4/25/10 I underwent open heart and have my aortic valve (mechanical valve)and aorta replaced. My aorta was just about doubled in size and my valve was down to a .7 opening (critical stage) I was yet again cheating death. I say that because I broke my neck in 2003 C2 vertebrea.
Here is the reason why I am writing today. The past few weeks I have noticed I am starting to twitch again. My mind is becoming foggy and forgetful. My neck and left side is really starting to hurt again. I sleep horrible. I wake up and it is like I got into a fight with my bed. I'm covered in sweat and my bed is a mess. My poor boyfriend is usually on the couch by 1am.
I do not want to get sick again. I feel my symptoms slowly coming back. I try to not think about them and act as if they are not happening.
The other day I was in the ER because I was having chest pain but it started under my left arm and went into my chest. Under my arm is a bit swollen still.
1st thought was bloodclot because of the bloodthinners. So I HAD to go to the ER. My bloodwork was fine and CT was fine. Told me I pulled muscles.
It has been since March since I have been on any antibiotics. So 5 months.
I see my ID on the 26th. She is not a LLMD but did treat me for 5 weeks IV and found my coinfections.
I don't know what to do? Should I request to go back on Doxy at least?
Advice, Please?
Posted by Lymetoo (Member # 743) on :
Very sorry to hear this!!! Sounds like you have had a rough go lately!
Did you have bartonella by any chance? I was wondering if that is what caused the pain under the arm??
Since you only had 5 wks of treatment, I would say you have a ways to go.
(Find an LLMD!) Posted by glm1111 (Member # 16556) on :
Look into treating for parasites. They can play a MAJOR role in Lyme disease. Lots of info if you do a search.
Gael
Posted by keepsmiling2010 (Member # 29789) on :
I do have bartonella. My levels were checked again in June. They went down a little bit but still showing up.
Even weirder in June my magnesium was high...
I go on the 26th for a check up and sure I will have all blood work done again.
There is a place in RI that is a clinic for lyme and coinfections. I am calling them today. Need to see if they will do a payment plan.
Posted by Nicole_Denise (Member # 20620) on :
Darn it! I put a post up recently too because I was worried I was becoming symptomatic again. I had bart, and recently I started to twitch again, and I've been getting sore tendons in my arms (I get this weird pain that starts on the underside of my arms about halfway up my upper arm, around through my armpit, and down the side of my chest).
I stopped antibiotics 3 months ago. I wasn't 100% better, but I was hoping that the residual problems I had were not caused by lyme. But I had been on antibiotics for 2 years.
I can't really tell you what to do because I don't see my doctor until the 30th. I just know that what I'm experiencing sounds similar, and I am getting more and more convinced it is Lyme symptoms returning.
Good luck! Hopefully you will get some answers at your doctors appointment
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