Had Lyme testing ordered by my family physician and the testing laboratory cancelled the Western Blot test because he had oredered a Lyme DNA test that tested negative so they say no further testing is necessary!!!!!!!!
Posted by WildCondor (Member # 434) on :
Lyme disease is a clinical diagnosis. Western Blots are not accurate the majority of the time and should not be used as a diagnostic confirmation. The PCR test is also flawed and a negative result does not rule out Lyme. Your family doc does not seem to know what he/she is doing whatsoever.
go to www.ilads.org and get a real Lyme doctor.
Posted by Michele (Member # 13669) on :
So, I just need to be rest assured that my clinical Lyme diagnoses from my llmd is truth and find a way to get past the need for concrete proof. That's hard for me to do!
Posted by julielynne4 (Member # 20336) on :
Yes, it is hard for lots of people, which is unfortunate when they don't seek proper treatment without that "hard evidence."
A clinical diagnosis from a Lyme Literate Medical Doctor is ideal in a world that doesn't have accurate testing for Lyme Disease. I know it's hard to do, and frustrating, but with treatment and improvement in your health you will not mind so much that you don't have a positive test.
Hang in there! JL
Posted by Lymetoo (Member # 743) on :
and a good LLMD!! Posted by Ahodge01 (Member # 23569) on :
Michele,
I know your feeling all to well.
For me it came down to the point no one had any answers. I have taken several lyme and co-infections test from just an Elisa to Stony Brooks test. They all came out completely negative, not a single band.
I saw multiple doctors for 6 months and they all swore I was sick. Countless blood test all showed nothing though.
I decided after six months of suffering that trying the antibiotics prescribed by my LLMD was the only solution. I dont know if I ever had a herx or what but all I can say is after 4 weeks of treatment I have gone from 40% to 70%.
I do a daily yoga workout and weights and strength training every other day. Before the antibiotics cooking dinner was chore.
Now do I have lyme? well in all honesty I dont know... I have been checked for a lot of viruses infections blah blah pretty much had my whole body scanned multiple times nothing. I do know now I have enough strength to function through a day of work. I have some albeit little hope that I will get back to 100% before the end of the year.
My LLMD right now is treat me for what he calls "Just Like Lyme" he says he has treated a number of patients who present with all the symptoms of lyme and never had a single positive on a test.
With whatever path you choose good luck with your recovery. I also suggest if you are thinking about trying the antibiotics out, I am doing a course of 3000mg of amoxicillin a day, it sounds like a lot but compared to what some people are doing on this site it is nothing. You may what to talk out something like this with your LLMD.
I am very sensitive to medications so starting me on three antibiotics and whatever else can be thrown into your body wasnt what i really wanted to do. Im debating doing 3-4 months of abx then just switching to herbs to see how that goes as I hate taking medications.
Posted by sutherngrl (Member # 16270) on :
You have to ask yourself, do you mind getting a clinical diagnosis for a sinus infection? Do you walk out feeling frustrated because you don't have a blood test to prove for sure thats what you have?
There are many illnesses that you leave your doctors office accepting without question, that are made on clinical symptoms alone.
Its the same for Lyme Disease! Its a clinical diagnosis!
The stress you cause yourself looking for the proof is so bad for you.
I started treatment with no positive bands, but after about a year of treatment I finally got a positive IGM CDC on my WB. That then backed up my clinical diagnosis.
![[Smile]](smile.gif)
JL