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» LymeNet Flash » Questions and Discussion » Medical Questions » LD diagnosis questions

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Author Topic: LD diagnosis questions
Junior Member
Member # 32746

Icon 1 posted      Profile for NYClymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have a few quick questions regarding Lyme diagnosis.

From what Ive gathered, there is no 100% accurate test for LD (although apparently IgeneX is above 90%).

Also, the only way you get a diagnosis is from an LLMD and it is clinical, meaning he diagnoses you and possibly starts you on serious abx based on what you tell him one day. I have symptoms of neuro Lyme which would mean IV abx, something not to be taken lightly.

Both of these seem kind of shaky. But I realized a third thing and wanted to run it by you guys:

If you herx on abx, is this a definite sign you have Lyme?

It seems to me that if you didnt have it, there wouldnt be anything dying off, therefore you wouldnt herx.

I'm having a hard time with the uncertainty of the whole thing.

Another question I have is about when to go see an LLMD. Since it is so expensive, I dont want to dive in head first without having a strong inclination that I have LD.

When did you decide it was time to see an LLMD and why?


Did you get tested through IgeneX as part of your diagnosis? Did you do it through your GP or LLMD?

Im just trying to get a grip on things and trying to learn more, surely like a lot of others out there. Thanks in advance.

Posts: 4 | From New York City | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 29020

Icon 1 posted      Profile for ktkdommer     Send New Private Message       Edit/Delete Post   Reply With Quote 
We saw an LLMD aftere 19 doctors failed and my youngest was bedbound with a brain full of rocks. He was out of school and missing his teenage years. I had to rule in or out things on my own.
Yes, tested through IgeneX. Did the cheapest way which the Western Blot IgG and IgM for a total of $200. Best money ever spent.
Your doctor may want to try orals first so don't think you might go right to IV.
If you have symptoms you are overdue for an LLMD appointment. My whole family is now treating chronic Lyme and it is no fun at all!
We herxed on some meds but not on others.
Good luck!

Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
You are right that people often test negative when they are infected. If your body does not recognize the antibody it will not make antigens against it which is what the tests are looking for.

Lyme changes it's protein coat to disguise itself and hide from the immune system. The co-infections also suppress the immune system. So people often do not test positive until after they have been on abx for awhile.

The LLMD will give you a long questionaire of symptoms to determine which infections you may have and if a trial run of antibiotics is appropriate. If you respond to the antibiotics, either by becoming much worse which is herxing ( - the die off ) OR by becoming better, then it is reasonable to assume you are infected and continue treatment.

If there is no response another drug could be attempted but if you continue to show no change at all, then the LLMD might decide it is not lyme or a co-infection. As the co-infections require different treatment, you need a knowledgeable doctor to prescribe meds. I had/have neuro lyme and never took IV. I have gotten much better.

You could see a GP and explain you suspect Lyme and would like a trial course of doxycycline but it is iffy that he would give you the correct dose for the right amount of time. You would need 200 mg twice a day. You could do this to see your reaction and if you herxed, then make an appointment with the LLMD. Not all LLMD/LLNDs are expensive though so it might be a better idea to just go to the "seeking a doctor" forum to get recommendations for someone affordable.

I didn't get tested until well into my treatment because I was told the strain here in this state did not test. That turned out to be untrue. I tested positive for borellia as well as ehrlichia and babesia duncani two years into treatment for borellia - and then bartonella. I wish I had known about the babesia earlier.

It is better to dive in now than later when you are 100% certain of the diagnosis because you are that much sicker! Hope this helps.

old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator

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