Lyme Panic

Not feeling well and not knowing why is a horrible feeling. We want answers and we want them today. With the panic of sickness, comes confusion. In confusion we tend to dilute the real issues. We grasp on to anything just to have a diagnosis.

Having said that, you must realize, not every symptom you have is related to Lyme. There are going to be some who are clinically diagnosed with Lyme who actually don't have Lyme.
If one sees the tick, removes the tick and gets the tick tested or gets the classic EM rash, then it's a sure bet you were infected and then you take the necessary steps to healing.
But more often than not, there is no warning before infection happens.

LLMD's are quick to diagnose Lyme without working on ruling out, sometimes, obvious other conditions. Then a patient is administered a myriad of medications that actually makes the body more sick.

I saw a patient two weeks ago who drove 3 hrs to see me because she was told over and over by friends and from what people told her on line, that she had Lyme. She panicked and related every symptom to Lyme. Once her and I went over her medical history, it was clear to me, she didn't have Lyme at all.
I've had and seen Lyme sufferers simply refuse to change their diets to rule out food allergies/intolerance. There was a man I saw who suffered years with "Lyme" diagnosed by an LLMD who was not getting well in the least. He came to our clinic, finally eliminated the foods he tested allergic to and in weeks got well.

Many food allergies, genetic dysfunctions of the blood, common stress, hormonal issues and many other conditions have the same symptoms as Lyme.

We all want a diagnosis for what ails us. For some, we chase our tails for years looking for answers. I was there, I get it, but don't assume or blame all your symptoms on Lyme. You may be over-looking the real cause if you keep blaming one issue.
Don't buy into the panic of Lyme because I know for me, personally, when I did that years ago (when posting and reading and talking about Lyme), I became so mentally exhausted and so out of focus, I couldn't heal.
If my nose ran, or was late on my period, or had a headache or my little finger hurt I said "It must be the Lyme"

I made a post the other day on a condition called Pyroluria, which has so many symptoms of Neuro Lyme

Keep investigating and keep an opened mind

Post Edited (peacesoul) : 9/30/2014 6:42:18 AM (GMT-6)

Good advice but also trust your instincts! I had 2 negative elisa's and now I know it was because the test was too soon after infection. My instincts told me all along but I kept listening to the dr's and there for didn't get treatment started until 7 months have gone by and am in pretty bad shape. Western blot positive + co infections.

It's hard not to become a hypo chondriac with this disease! The internet can be both a curse and a blessing!

Tonesg, a reaction to treatment is not a confirmed dx to Lyme. Lyme does cause a break down in health, but since there is so little known about lyme, we do not yet know if Lyme is the cause of food intolerance.
I also believe, as an LLNP, Lyme is also overly diagnosed in those who may not have it and under-diagnosed in those who do.
It's a catch 22.

Never NOT get tested of course, but the Elisa has a huge failure rate and cannot be considered a full proof test. My point was really, don't stop looking for answers even if you were clinically dx with Lyme.

Okay, it's time to take a breath here!!! We can disagree without having an argument - not that I know for sure that's where this is going, but an ounce of prevention is worth a pound of cure!!!

I don't happen to agree with the statement that Lyme is over diagnosed (at least here in the U.S.), nor that response to treatment isn't confirmation of an active infection - but I won't argue with anyone over it either!!

BUT!! I do know that not all will see things this way, no matter how hard I -or anyone else - try to convince them. We can still share information with each other and not argue - there are too many issues at hand with these infections to get bogged down with arguing with each other.

I never mind discussing different topics on this forum, as long as they stay discussions and not arguments!

The problem with using lab results only to diagnose Lyme is that the spirochetes have a way of lowering the immune response - which is what those test rely on.

You are very right about a clinical diagnosis being open for debate - although at one time, before the CDC was so obviously in bed with the IDSA, even the CDC site said that a clinical diagnosis was the right way to diagnose Lyme and the other tick-borne infections, with lab results hopefully backing up the diagnosis.

For the most part, it's the IDSA that says a person needs to have a positive blood test, and it's the ILADS that says clinical diagnosis with hopefully a positive blood test to back it up.

The other obstacle is that what's being tested for with Lyme in only 4 - 5 strains of Bb, when there are many more that cause disease in humans that are not being tested for. Sometimes a doc will classify those to be STARI or Masters Disease in order to avoid issues. They are known as "Lyme like infections" because they don't fit the very narrow description of CDC's Lyme disease. Which, by the way - was only started for tracking purposes, not for diagnostic or treatment purposes.

I took 900 mgs of Minocycline for a full 12 months before I tested positive for Lyme and RMSF. I never did test positive for Bart and I don't believe I ever tested for Babs or anything else. The LLMD that I saw for that one year told me to assume I had ever one of the tick-borne infections considering my exposure & tick attachment history. I can say his name here as he passed away a while ago - Dr. Edwin Masters - STARI's name was changed to honor him for his work.

In a perfect world, we could rely on blood tests to tell us if we had Lyme or not, but so far we aren't there. We can't even know for sure if we still have an active infection or not once we believe we have completed our treatments with the current testing! Even with the CD57, some patients have a fairly normal CD57 number and yet they are sick as ever, and some have really low CD57 number and aren't too ill and heal quickly.

There is sooo much that still needs to be learned about these diseases and nothing will get done while the IDSA, CDC and ILADS are butting heads!!

Okay, ....stepping down from the soap box and slowly backing away.
Good thing I didn't really get going!! LOL!!!

Thanks Trav. That makes sense. I think the problem lies more with getting negative results because of unreliable testing. I am glad Toby had both a clinical type of diagnosis and the Igenex testing. It gives us peace of mind.....at least so far.