TO: ncgirl88: - Lyme Disease Message Board

raleigh86 · 06-23-2005, 10:29 AM

ncgirl88:

How are you doing? Where do you stand in your treatment, what meds, when is your next Huntersville appt.?

This is my Flagyl week. I tolerate it better now then I did with Levaquin, but still get the fuzzy head feeling. I switch to Augmentin next month. Kind of nervous about trying something new, but hope it jolts treatment a bit. I haven't seen much progress over the months. I didn't do well with Biaxin and Mino; had terrible joint swelling. I have been taking Neurontin for shoulder and elbow pain. I was left with a tendon issue from Levaqun. I have found no relief with Neurontin. My next appt. is end of July with Susan. I am looking forward to meeting her.

Hoping you are well...

Raleigh86

ncgirl88 · 06-24-2005, 05:54 AM

Hey Raleigh -

I am sorry you are not feeling much improvement. I am doing better. I am managing to stay in school which is amazing to me. I have my days where my vision is strange and I have mini panic attack like moments but they go.

I tried going off everything for two weeks. On the fourteenth day I had insomnia that kept me up until 4 a.m. and buzzing throughout my body so back on the meds.

I start on Levaquin today and am apprehensive about it. I know a little too much about that class of antibiotics but I want to try to hit bartonella in the event I have it. They didn't test me for it because it is so common that they just want to treat with something that would hit it. So we shall see.

I don't go back for three months.

My husband is not doing well. He did not feel well last night and I felt his forehead...clammy and hot. His temp was alright though. I really suspect that he has babesia. He goes back soon so hopefully they will get him back on track. He had to cancel his last appointment so it has been months for him. It just gets exhausting keeping track of my own stuff and feeling like I have to keep track of his too because he is not taking on as much responsibility with healing.

So that is our lives. Hang in there. To me it sounds like you have had some big herxes. I had joint swelling when I was on doxy back last summer before my diagnosis and literally you could watch my fingers swelling. I hung in there and chaulked it up to herxing not a reaction to the meds...now I can take double the dose and no swelling. I didn't have swelling in my big joints though that was visually apparent.

I am sorry you have had such a tough time. Keep me posted...

NCgirl88

Betterdaysforme · 06-24-2005, 06:43 AM

Hi ncgirl,

I was just reading your post and something hit me funny. I never thought of the swelling as part of a herx. For a very long time (even before lyme diagnosis) my left elbow on the part closest to the inside near your body has been swelling off and on.

In fact the original chiro I went to kept trying to massage it because it looked like edema. I was so ignorant I went along with this. Anyway that is why I went to my GP ( way back when) to get naproxen and that is when he also talked me into the valtrex.

He said maybe I had a virus and this would help. Of course then after 2 pills I ended up with the vision loss (reaction to the valtrex I am sure) and then steroids (because this had to be an MS attack), another MS diagnosis and so on and so on. All the time it was the lyme I guess.

It still happens (the swelling) now and again and in fact is going on right now. In fact I showed it to my husband 2 nights ago. Soooo maybe this really is a herx after all. I will have to document this too. Thank you, thank you, thank you.

Have a great day,

BDFM