treatment change

I've been in treatment with an LLMD since July. I really haven't had much change. After a few weeks of orals, I've been doing rocephin with various other abx added on and off for the past 6 months. Recently I had an allergic reaction and was taken off all meds for 3 weeks.

I went back on the Rocephin for a week when I found out my finances are not going to allow me to do any more rocephin. My doc was just about to increase my daily dose to 4 grams for 4 days instead of 2 grams everyday.

Anyway, I was put on levaquin and mino and will pulse M W F. I don't like the idea of being off meds for 4 days a week, that scares me.
I took my first day of mino yesterday, and today I feel absolutely awful. I never feel good, but I feel like this is a backwards slide.

Do you think I could herx from it already? Or maybe I really do need the rocephin and not having a steady stream of it for the past month has really messed me up.

I don't know what to think at this point, and I don't get much info from my doc.
I just think I should have gotten more improvement than this in the past 7 months..I feel very stagnant and scared now.

I was never really sick before lyme hit me like a freight train, and according to my tests I've had it a long time. I never really knew, always felt healthy and energetic. Now I can barely do laundry.

Another question..does lyme make anyone else feel completely detached from everyone. Like you just want silence and to be left alone, but your heart wants to be involved with everyone like always. It's so strange..I've never been like this before in my life. I can't sit and watch tv with anyone, can't listen to conversations too long.. stuff like that? I guess that's off the subject, but I thought I'd ask. I don't like it one bit!!

Thanks!

Hello 2long4this,

Your concern about treatment working and the length of time it seems to take is very typical of many cases. I hope that will all help alleviate some of your concern and anxiety about it. It sounds as if your LLMD was listening to you and attempting to increase your Rocephin dosage but sometimes we just cannot afford it. So, they went to plan B of orals. Minocycline has a reputation of making people feel worse at first - even after just one dose. Are you feeling an increase in symptoms?

Pulsing of antibiotics is used by many reputable LLMD's so try to give it a chance. Remember this is a long and slow process for people who have been infected for a while so reach deep down inside and keep telling yourself that it will get better. Better yet, do you have someone who can tell you that also. My husband used to and I would always say I don't know or I am beginning to think that I am not going to better or I think I am not going to be around soon. I mean, I was really scared and this illness makes you feel depressed, so I do relate to your feelings. .

When I was in the midst of the worst part of neuroborreliosis (it does affect our nervous systems - hearing, smell, mood, etc.) I remember not wanting to be around people. I couldn't handle conversations, I didn't read much anymore, I didn't enjoy TV. I was in pain and it was too overwhelming! I did see a cognitive behavioral therapist who helped me to get through it. She said to give yourself permission to not participate for a while, that there will be life beyond this at some point, to rest frequently, to listen to soothing tapes and music, to do only that which I can handle. I carried a lot of guilt about not being the person I was and if you were like me, my feet hit the ground running in the morning. I still have difficulty with people's voices sounding too loud and I do have to tell them to speak more softly, and I do tend to over do it so then I have to go to bed early.

I hope that in sharing my experiences you will know that your concerns are understandable. Please remain hopeful and remember to chart your symptoms. Keep it simple so that you won't put it off.

Take care,
bcaring

The good news is that in the last 3 months I have been able to go to parties, go out to dinner at people's homes, carry on a conversation and get what is being discussed. In fact, there are moments when I feel I have a better memory than many people my age (57). I am able to walk 30 minutes or more almost every day and I get many things accomplished.