Can long term Lymes really be treated within 21 days?

Most definitely get a second opinion!!!
What strength was the dosage of Doxy that you were on?
I don't believe that you can test false positive, since they are testing for evidence that it is in your bloodstream only, tick-borne infections can go completely undetected once they infiltrate the tissues.

Here is what the CDC has to say about diagnosis;

"Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, landscaping, and integrated pest management. The ticks that transmit Lyme disease can occasionally transmit other tick-borne diseases as well. "

This can be found on their website here: www.cdc.gov/ncidod/dvbid/lyme/

Considering that you were started on treatment four years ago, it is my belief that you are most likely looking at a chronic infection. The majority of LLMD's that I have read about say that a person with a chronic infection needs to be on treatment 2 full months past the disappearance of all symptoms - so the 21 days of abx were just a drop in the proverbial bucket - IMO.

Does this doc that you are seeing a LLMD?

In Dr. Burrascanos' "Advanced Topics on Lyme Disease" (can be found on the internet as a pdf file) he states that "doses of up to 600mg daily are often needed, as doxy is only effective at high blood levels."

May I suggest that you go ahead and find a LLMD & make your 1st appt, before your next appt with your Rheumy? I saw a Rhuemy here were I live - once - we didn't quite get along.... I hope you are having better luck with yours!!

"I would have more severe symptoms and also that the doxy would have made me feel better."


Neither of these statements are necessarily true. I functioned reasonably well for five years before being diagnosed. Just had various fleeting symptoms. When I started abx after a new second bite, all hell broke loose; I did not feel better, but much worse for several months. Then I started to get better.

You really should find an LLMD and start proper treatment before you really do get worse.

Good luck!

The main reason - IMO - that we Lymies get false negatives is simply because the body is no longer trying to fight off the bacteria, or it has already gone to a chronic infection. Also a person has to have the 'infection' still residing in their blood stream for the tests to find it.

If a person has gone "too long" without proper treatment, these tick-borne illnesses will pass from the blood stream into the tissues & organs.

I believe that just about the only way a false positive happens is from mistakes or some small accidents in the lab. I believe it's a lot like being pregnant - you can't be just a little bit pregnant.

Just my two cents though.

Here is how Quest (and CDC) get 'false positive' test results from the WB.

First of all, Quest reads about a dozen bands on the WB. Many of these bands are 'species specific' (meaning LYme) and many of the bands show negative.

+Lyme,

This is interesting given that SO many people seem to post about how they had a least one positive test, however their doctor claimed they didn't have Lyme...and even in some instances claimed the patient wasn't sick at all. I'm very aware of the political controversy effecting how doctors are treating (or not); I've seen Under Our Skin several times and have read many, many books...yet I still struggle to find the logic... It seems like some doctors are SO determined to stay ignorant and remain in the stance they've already taken...for what reason? This doesn't happen with other diseases. UGH!

Madrivergirl, I hope that this is not the case, but it seems that the problem, at this time, is that PCPs do not know enough about Lyme. That is ridiculous and neglegent, agreed.

I tend towards believing that because the PCP does not know anything about the disease OR the lab results, he/she either 'makes up' some type of psychological diagnosis. That is so much easier than digging in and learning more about Lyme.

I must say, that my original PCP REFERRED me to an LLMD (after looking over blood tests) , clearly stating that he did not know anything about Lyme or how to treat it. Yes, that seems a cop out, but at least he was honest and knew about a Dr who had been specializing in LYme.

Yeah, Madrivergirl, absolutely, regarding respect for a Dr who is open and willing to seek a diagnosis.

I was not lucky the whole time. The LLMD to whom my PCP referred me did not take insurance. Plus, he ordered labs and scripts not covered by my insurance. I went to him to get more tests and a solid diagnosis and to start treatment. (that was the 2 mo. on abx). Meantime, I waited on a LLMD's waiting list, which took over a year to get in to see him.

So, when I ran out of abx (and felt some improvement) I went to another PCP that someone on our local Lyme board recommended, hoping to get more abx. He asked why I had come to him and I said that the local Lyme board said his group had experience in treating Lyme. He laughed. He f'ing laughed at me.

And said, 'I don't have experience with Lyme because it is so rare around here.' I asked, 'Then why are all the Lyme Drs so full? Either they can't take any new patients or they have year long waiting lists.' He said he didn't know and proceeded to talk to me as if I was an idiot.

My next experience was to call every ID Dr covered by my insurance (that was within reasonable distance) at the request of my insurance company to whom I had turned for help.  (ha ha)   I called about 8. Each time I asked 'Does this Dr have experience diagnosing and treating Lyme disease?' And EACH and EVERY time it was the same: A big, flat, 'NO!' They were freaking trained to say 'No!' because not ONE receptionist even put me on hold to go ask.

Not one asked if I had an engorged tick on me in the middle of a bull's eye. Not one asked how sick I was. Not one offered another reference. Not one offered any kind of suggestion or help.  'No' was the only word out of anyone's mouth.

So tell me this: How in the world would the typical ID Dr know ANYTHING about Lyme -- even enough to dismiss it? BECAUSE THEY REFUSE TO EVEN SEE ANYONE COMPLAINING OF LYME SYMPTOMS! THEY DON'T WANT TO HEAR about ANY TICK AND THEY DON'T WANT TO HEAR about A RASH OR UNEXPLAINED FEVERS, NOT ANYTHING. So HOW would they know??

So, WHY IN THIS WORLD WOULD I WANT TO GO TO A DR WHO IS SO CLOSED MINDED? Why would I go to a Dr who knows so little that he would refuse to see a patient who needed help?

IMO, these are the true 'Quacks'! They know nothing about anything past their arrogant, pointed noses.

Post Edited (+Lyme) : 9/18/2010 10:42:28 AM (GMT-6)