I haven't logged in for awhile, so glad you are still here. I was bit in NC in 2002-took 6 months to recieve treatment. Have tried all kinds of combos of PO abx. Was infected with ehrlichiosis and lyme. Now, after 7 months of IV Rocephin and Zith, I still have headaches, joint pain, swollen knees and neck. My insurance Co has ok'd IV through 9 months. Is there a point in continuing? Or should we try to save many dollars and call it quits with the Iv? I really need some input on what to do. Thanks and Bless You All.
hatterasbit in Ohio.
Posted by flyers999 (Member # 1397) on :
Are you herxing on the IV ? Or are these just lyme symptoms that you've had. Are they intensifying with the IV?
Posted by zil (Member # 12048) on :
Have you had any improvement with the Rocephin/Zith?
I wouldn't give up but maybe try a different combination of antibiotics. Have you been on flagyl for the cyst form of borrelia?
I'm sorry you are having such a hard time with this disease. You must be pretty frustrated. Liz
Posted by hatterasbit (Member # 4573) on :
Thanks for the replies. I have had these same symptoms the whole time. The only difference I can tell is my HA aren't quite as bad in the AM, but worse now at night. I had been on Flagl in the past and was sickened by it. I also tried Menocine and got these horrible red bumps on my legs. Nodosum or something like that. I have a LLMD in western PA.
Posted by listenswithcare (Member # 10719) on :
I have been thinking about the same kind of thing for myself. Except, I have stopped IV, but still have the PICC. Some of my symptoms have returned, so....
Anyway - for your situation. In my case, we (together with my LLMD) decided to stop the IV ABX when I went a month without any real change in my symptoms. In other words, I didn't feel I got a whole lot out of the last month. I was on a total of 5 months. I was taking Zith and Flagyl at the same time and I have since replaced the IV with Bicillin shots and continued the orals.
I would agree with the other poster that mentioned a cyst buster drug (like Flagyl). Perhaps you could ask about that with your doctor. It is a hard decision to make, I think - when to stop. How much relief have you gotten? Are you herxing? Are you cycling? These are all factors in making that decision.
I wouldn't use money in the factor if I could help it. You went through the trouble of having the PICC placed and going this far, it is probably best to make your decision based on symptomology.
Let us know what you think.
Robin
Posted by 5dana8 (Member # 7935) on :
have you tried tinnie? It's a cyst buster. Easier to tolerate than flagel. I have read the roceph make the ketes go into cycts & you really need to use a cyst buster. Maybe even plaquinel or GSE if you can't do the traditional ones?
When I was on IV & stopped herxing or seeing improvment I switched abx. There are ALOT of good IV abx out there. Have you only tried the 2~ Rocephin & zith? I got major improvement on clindamycin. + the zith + palquinel......(sp?)
hope this helps & you can feel some improvement soon Dana
none of the above is medical advise...just my 2 cents.
Posted by flyers999 (Member # 1397) on :
Sounds to me like the IV isn't doing much. You should have had some kind of reaction, either better or worse, by this time. If you do stop, and feel no rush of symptoms after 3 or 4 days, that's another indication that nothing was happening.
Why don't you switch to IV doxy? It is the drug of choice for ehrlichiosis. I'm sure you had the oral form at one time or another but some people do not absorb doxy into the blood stream very well.
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