I just got off of 28 day picc line of Rocephin. I've been sick for three years, just recently "officially" diagnosed. Previously I've had three separate doses of Doxy--20, and 2 rounds of 10 day--all months apart. Each time, I felt better for a few months, then was back at square one. On the Rocephin, I had "good" days, and really bad days. I've been off for a few days, and feel some sy,ptoms again,although my energy level is much more normal. Should I expect to go back to square one again, or be hopeful? SHould I take the doctor up on three consecutive months of Doxy or wait to see if I get worse? I know everyone is different, but I'm so tired of the rollercoater and want to get off! Any help or advice would be appreciated!
Posted by Tomiss (Member # 24493) on :
My treatment history is very similiar to yours. I was treated with bactrim the doxy for 28 dyas. A year later 28 days of IV rocephin (in Oct. of 09) and today I am at square one with 8 bands positive and 3 IND on a WB.
Is it a LLMD you are seeing? Were you tested for co-infections?
Posted by 17hens (Member # 23747) on :
I would certainly suspect co-infections. That was why doxy and IV rocephin weren't enough for me.
Are you seeing an ILADS trained LLMD?
Posted by Cajinmama (Member # 25977) on :
I have not been tested for co-infections, which I've already been thinking should be the next step with my doctor. I'm not sure if she's ILADS trained--didn't ask that question, but she did come highly recommended by someone on this board. I was so hoping that the IV Rocephin would be it since it's so strong and(I think) drastic treatment. From reading a lot here, it looks like I may be wrong. GOing to try exercise and seeing a holistic guy to try to continue to heal.
Posted by TerryK (Member # 8552) on :
Caj - if your symptoms come back quickly after IV, it is likely not lyme but a co-infection. Lyme is slow growing.
Testing and treating for co-infections is essential for most chronic lyme patients. You need to see someone who can and will do a clinical diagnosis if necessary because testing isn't that great for many reasons.
If you see a wholistic practioner, please see one who is ILADS trained so that you can keep the momentum going from your IV treatment.
It seems clear that you are onto something important since IV helped so much so at least you know the direction to go now.