Want to clarify something about diagnosis

Hi again,

I just wanted to clarify something about lyme diagnosis. I thought that the best way to diagnose was using a combination of both relevant symptoms AND positive response to antibiotics.

Lots of people here are sure they have Lyme disease but aren't responding to treatment at all, even many different types of drugs over numerous years. I would be interested to know if symptoms alone are judged to be diagnostic? It would be a shame if people are assuming lyme infection and missing something else that might be treatable in another ways...

Any thoughts?

Kirsty

The best indication of a successful treatment is a person who comes on to the forum for a while and then disappears!

IMO, it is always necessary to rule out other possible causes of one's symptoms - not to just assume that a person has LD according to their symptoms - unless there is a bulls eye rash (LD is the only thing to cause this type of rash) or other reasons that I may not know of.
The CDC and several LLMD's - including well-known LLMD & researcher, Dr. Joseph Burrascano - state that LD needs to be be a clinical diagnosis. Response to abx is helpful to confirm the dx., but not necessary for the dx.

I responded horribly to my abx treatment! I herxed from the first day (quite literally) and I just continued to get worse. By the time I made the decision to stop the abx, I was stuttering so bad I couldn't communicate very well, I was having minor seizures, black outs, anxiety through the roof, ... - you get the picture- I pretty much couldn't function.

After I recovered from that, I realized that I had been sick with tick-borne infections for so long I needed a different approach. Since I was already very familiar with Acupuncture and Traditional Chinese Medicine, I headed in that direction - fortunately for me!

Hi Worrypot,

I'm right with you:

I am personally pretty confident that I have lyme (as is my LLMD)  even though I have negative tests results I have typical symtoms PLUS:

- Positive response to antibiotics

- History of exposure to ticks (work outdoors and have had several bites)

- Negative tests for many other relevant things.

I've never taken steroids so that isn't on my list that compares to yours.

But sometimes I still do wonder if there isn't something ELSE wrong with me even though the ELSE has been ruled out with extensive and repeated tests of all kinds. 

My only Lyme test that has come back with some indication was the very first one I got, 5 months ago. It came back indeterminate.   I was already on Doxy (for 2 weeks) at the time.  Not sure how that affected the test.

All the rest have come back negative all the way-- and I was on heavy antibiotics during testing.   Still am.

Never did Igenex tho....my LLMD is so convinced I have Lyme that he didn't want me to bear the expense of testing with them.

Would be good to have an answer!  But that might never happen. 

All of my initial (15 or so) symptoms responded very well to anitbiotics.

Most seem to now be gone for good (after 5 months of antibiotics, though!) and a few others are still with me.

Only recently did the ringing in my ears stop. Glad to finally be rid of that one!

And the shooting pains in my teeth which came and went for a long time now seems to have stopped also. It's been a month and that symptom has never been gone that long before.

So I have hope that the few that are left will disappear. Migrating upper back pain is the worst!

My LLMD feels I have reached a plateau with the amoxicillin and as of today he has put me on Mepron along with Zithromax which I was already taking with the Amox. So we'll see.