Posted 2/14/2009 9:42 AM (GMT -7)
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.
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.