I still had symptoms when IV was d/c'd, but within 7 days all symptoms are returning....
including the bullseye rash.

One normally does NOT herx off of abx.

quote:

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Originally posted by John292:
Hi, I assume you were on rocephin for a long time, at least several months.

Since you got a bulleye rash now after being treated, is it possible you just got bit again?

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The original bullseye never went completely away.....just sort of faded. Now after 7 days off IV, it is coming back. Same size and exact same place. I have had this bullseye for 8 months now.The doc calls it an "atypical" lyme rash. It is exactly where the tick was removed from. So, apparently not all rashes look like the text book descriptions.

I was on IV rocephin for 56 days.....that is their treatment protocol. Not sure how long I have had lyme disease because this is the third tick bite in 10 years.

The most recent bite occurred in Oct. 2003.
I have many long term (neuro) symptoms, so we are not sure if the other bites have contributed.

I had a positive PCR by blood and urine....will start testing again in 3 weeks.

Common practice now is to do orals in combination with the Rocephin; Flagyl at the least, to deal with the cyst form that R doesn't touch (indeed, it's been said R stimulates the Lyme to form cysts).

Also, most now continue with orals for a period after the IV - for months. I did it for a year.

What you're experiencing can't really be called a relapse, because you never really got well. But it is almost certainly a resurgence of the Lyme.

We're all very sorry to be bearing this bad news to you; but your best chance for getting better is to know exactly where you are, so you can deal with it.

I hope things go better for you in the future.

Thanks for your input! I do not feel you are all the bearers of bad news. Actually, I see it as the opposite. You all provide me with the information I am looking for based on your experiences.

It helps to hear from those who have been through it and are still dealing with it. Makes you realize your not alone in this mess!

I will be seeing the doctor today and will discuss many of the points you have all mentioned. I appreciate each and every one of your posts.

Thanks again,
Pitnum

What did the LLMD say? I'm just curious.

My LLMD told me to expect that 'relapse' feeling after coming off the IV. I'm continuing on orals for at least 3 months.

My LLMD said they never said I was cured after the IV, but their protocol is to be off abx for 4 weeks and then do repeat PCR testing. Why take a picc line out only to possibly need it again in 4 weeks? Makes no sense to me!

If positive again, they will do further testing and resume antibiotics.

I am not really comfortable being off abx for 4 weeks when I still have symptoms. Why let the bacteria multiply?

Apparently, this protocol is based on problems with insurance companies allowing long term abx. Although, this is NOT a problem with my insurance company.

I think they need to adjust their protocols based on individual insurance plans.

Hope this information helps you.

sounds like you may have been treated with IV by the same place I was. I too had symptoms at the end of IV and didn't test positve again after 4 months. I gave up on that and went to another llmd and have been on orals for a year so far and feel better than I have in 3 years. THe treatment in on going.

Wow, it sounds like youre getting treated at the same place I do. It wouldnt happen to be in New Jersey, would it? Tick Center...?

I agree that it makes no sense to remove the PICC, then wait 4 weeks, retest, etc, etc. I finally tested negative after 56 days of IV Rocephin AND another 56 days of IV Doxycycline. The only orals I was able to get off them was a small dose of Zithromax with the IV Rocephin, which seems to be their standard treatment protocol.

I still feel pretty well physically, praise the Lord, but my mental/neuro symptoms have been flaring up. I was told these can take up to a year to go away completely. Do you or anyone else happen to know if this is true? I dont seem to be "relapsing" in any other way other than the extreme irritability and mood swings. My MRIs came out normal and SPECT scan showed decreased blood flow to the frontal lobes... which also is indicative of depression which I have struggled with since childhood... (and was also infected unknowingly with the Lyme).

Sorry to go on like this. Just I was reading your thread here, Pitnum, and it doesnt say where you are from but everything you've said sounds exactly like that Tick place in NJ. I'm being treated by them now for Candida (oral anti-fungals). Please feel free to e-mail me ([email protected])

Peace and best wishes,

Rapturegirl