ARRRGGGHHHH!!!!!! Ok, I am better now...sorry sickinVT - but sitting here sick in NC and having to revisit my anger at the medical community makes me CRRRRAAAAZZZZZYYYYYYY!!!!
That is not directed at you sickinVT - I just haven't found a good way to channel this negative energy I am walking around with yet.
So, my story is this. Got accutely ill in May 2004 after experiencing some smaller issues for about 2 years...but these small issues would come and go. Anyway, saw over 15 doctors from May 2004 to October 2004. I had two ELISA tests for Lyme. The first was from LabCorp here in NC - the other was from an extremely GREAT Infectious Disease Doctor from John's Hopkins - I hope your neuro heard that - JOHNS HOPKINS - just in case he didn't hear the first time
Anyway, the doctor at JH sent my bloodwork - lyme and all coinfections - including other bacterial infections I had never heard of through to QUEST Labs. All Negative. All of them. But JH Infectious Disease doctor said I think you have a tick borne illness - here is a big supply of doxy until you can get home to NC and see someone else to figure this out. I was on vacation - worst vacation I have ever had - but nonetheless was away from home. I hope your neuro caught this too - JOHNS HOPKINS Infectious Disease doctor CLINICALLY DIAGNOSED me with tick borne illness.
I then got home and found an LLMD. My bloodwork was sent to IgeneX Labs in Palo Alto, CA - It turns out I was equivocal for lyme IgM antibodies (the ones in early infection), EXTREMELY positive for lyme IgG antibodies (which are found in late infection - Chronic) and my Ehrlichia both hme and hge were positive as well as Babesia.
Ok, so I could have died, could have permanent damage from this. That is one point. The other is that the nature of the lyme bacteria is extremely complicated and is not easy to test for...thus it is supposed to be a clinical diagnosis.
Because of attitudes like the one your neuro has it was even hard for me - sick as a dog for 7 months, lost 15 lbs., bruising all over my legs, couldn't breath well, chest pains, periods all off, migraines, headaches, eyes starting to track strangely and spasm at times, major digestive issues, vascular issues, dizzy, body temperature low, blood pressure extremely low, the list could go on forever - to accept that this could be lyme and coinfections even with positive tests because they were not done by an FDA approved lab.
Did I mention I was a perfectly healthy 34 year old just a year ago before this happened.
So I started treatment because I was desparate and then I realized that I wouldn't have responded so well to the antimalarial drug Mepron if it was not malaria or the coinfection babesia I was dealing with and I had tested negative for malaria....So I felt more confidant that IgeneX was right on the money and that LabCorp and Quest basically know squat about testing for tick borne coinfection just like our mainstream doctors.
So pardon my anger - it is not directed at you but at your Lyme ILLliterate neuro. It kills me how some doctors can throw around the majority accepted beliefs - while having done no research of their own. I wonder what his explanations to me would be. Thanks to other doctors that have the same opinion as he does our medical system does not have a grip on lyme and patients are left wondering what philosophy is right.
It is sad there is this polarization and patients are caught in the middle and as the medical profession takes its time and debates our bodies are left under attack.
Sorry SickinVT - caught me on one of my frisky days...To answer your neuro and your question - These were my test results...
Two negative ELISA tests which I had only a 30%-50% chance of being correct anyway since I am Chronic...multiple negative test for coinfections
One Positive from Western Blot and two positive for coinfections...
I am just really disturbed to hear your neuro preaching this without taking any of the variables into account...it just shows how little he knows about lyme...
1) How long has person been infected? That would determine the outcome of an Elisa test. Did the Elisa test for IgM antibodies only or IgG's too?
2) Was it the Elisa or Western Blot Test?
Lyme truly is a clinical diagnosis using pretty definitive symptoms to diagnose.
If your neuro knew anything about lyme he would ask these questions - He would also ask these questions if he was a skilled clinician in any respect dealing with any issue and just goes to prove he is practicing medicine with absolutely no component of creative thinking what so ever. I would find another neuro just for this reason alone.
I am sure your neuro would think my LLMD is a charlatan despite the fact he is a respected Infectious Disease Doctor. He is not just some witch doctor...he actually was looked down upon many years ago for his aggressive treatment of AIDS patients and guess what - now he is winning awards for his work - actually accepting bronze placks in fancy big city hotel banquet rooms...SO I am living for the day when his lyme work will be recognized too and all these lilly-livered, pansy M.D.'s will be administering his protocols to lyme patients and understanding that 3 weeks worth of abx will not treat a new lyme infection effectively.
I feel better
Sorry SickinVT but thanks for giving me a window to vent...I really needed that!