I tested positive by PCR for Lyme 2x with blood and urine. Did orals for 8 weeks and IV's for 8 weeks.

Symptoms returned 14 days after PICC was removed. The doc said I can't follow up with orals because I need another positive test to justify this!

My insurance company does not care if I am taking oral meds or not, so why wouldn't the dr. give me more oral abx? This doesn't make sense to me......what would the harm be. I was herxing at the time the meds were discontinued.

They also don't feel it is necessary to treat a cyst form. Once you've done the IV protocol, you should be fine! They can't figure out why I still have many symptoms, so they want me to see a rheumatologist.

Forget the Rheumy, if chosen by your duck it's likely they'll be just as clueless or worse - try to force steroids on you.

You need a new doc, and a.s.a.p.

Guess who still has had positive tests!(some of which were PCR tests which means they actually found bits of DNA still there, not antibodies)

It's your health and your life. Go with your gut feelings and get a more lyme-literate doctor.

I hate to sound like I'm begging for meds, but that's pretty much what it comes down to. Sad, huh?

I never heard of needing a positive test result to prescribe oral antibiotics. What is wrong with this medical community? Do they get kickbacks from the labs that do PCR testing?

It really makes you wonder if there is some kind of scheme going on here!

About your relapse after the IV Rocephin, that is more common than not, as the Rocephin sends the spirochetes into the "cyst" form of the bacteria and will just hid out until the Rocephin is stopped.

You may get a couple of good weeks, as I did when doing IV Rocephin BEFORE I saw my LLMD, Dr. C of MO. It wasn't until then did I understand this and what a mistake it was for me to go on Rocephin without a follow-up antibiotic to the zap them when they came out to play again.

I, agree, do not go to the Rheumy, I did, before we actually found out what the problems with me were...Lyme Disease.

The two I saw were considered the best, one at the useless for Lyme Disease, Mayo Clinic and then, again, when I saw his professor, who by then was in private practice. What a big waste of my time and big money to see them.

It's you life, but, if it were me, I be dumping the duck you are seeing and get to a real LLMD asap.

Good luck and let us know what you do, OK?

That's just so insane!!! You treat until you are symptom free for at least 3 months. I emailed you a list of LLMD's in NJ.

There is an excellent one I go to, who combines antibiotic therapy with supplements and homeopathic treatments... And treats for coinfections based on symptoms, regardless of test results. I've had amazing results in 4 months of treatment, and I've had Lyme for 9 years. Lucky for me, I was started on treatment for Bartonella from the get-go, based on symptoms alone (2 tests for co-infections came back negative).

It may very well be that you need a cyst buster like Flagyl and other orals for several months. See, this is why I don't understand why people go on IV, when all along orals could have done the job. But that's just my opinion. I hope you jump ship quick and find a real LLMD. Read my email to you today.

Guess you didnt heed our warnings carefully enough, tis ok I'll let you slide- this once

Get a LLMD

I guess you have to have sex with a deer to get Lyme.

You do not have to have a positive test to follow up with oral (or another round of IV). There is no test that can tell you lyme is out of your body.

It doesnt make sense, but people are told these things all the time.

You will have to find a differant Dr. If you tell us where you live we can recommend someone to treat you properly.

Beg, borrow, steal, go through trash to get antibiotics. I would have done it all.

It is sad, but not unusual.

And you need to get evaluated for all the co-infections. I say evalutated rather than "tested" because tests are close to useless with all of these diseases. Find a doctor who knows the symptoms, patterns, and treatments for ALL the co-infections - including Babesia, Erlichai, Bartonella, Mycoplasma, etc. The co-infections are difficult to eradicate so you have to find a doctor who knows what he/she is doing. Bartonella can be transmitted by the same ticks that transmit Lyme. Also, when Bartonella is transmitted by a tick, the infection tends to be more severe and bypasses the "typical" symptoms of cat scratch fever (namely the swollen lymph nodes). A good LLMD is invaluable when it comes to these infections.

quote:

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Originally posted by TheCrimeOfLyme:
80 posts and you have been here since 2003?

Guess you didnt heed our warnings carefully enough, tis ok I'll let you slide- this once

Get a LLMD

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I guess I made the wrong choice.......this LLMD was recommended and I do take all your warnings and advice into consideration. I have learned a lot from all of you, it's just a shame that the doctor hasn't. I was not aware that Lyme Specialists or someone who is considered an LLMD can turn out to be a duck!

Oh well, you live and learn.....sometimes the hard way. I will continue to heed all warnings and advice here. I don't post alot myself because I don't consider myself well versed in this area yet, but I'm sure I will be soon enough!

Thanks again for all the responses.

Pitnum