Interesting question... Many possible answers.

YEARS ago.. when many ducks said.. "No Lyme HERE".. and "Lyme doesn't cause THAT symptom"... and/or, "You've already had enough antibiotics, you are now cured", as you lay on the floor at their feet begging for mercy....

Well.. back then.. to be able to PROVE we were sick (how degrading can that be).. many of us went through these tests... and too.. because we didn' know better.

Also.. some of us had to endure them to be "documented" so insurance would be more inclined to pay for treatment.... IF they showed something was out of whack... and IF insurance companies decided they would.

We were pretty much tested to death back then.. or until we had no more money! THEN... unfortunately.. we were STILL (most of the time) denied help.. no matter what the results were.

We learned things from those early pokings and prodings... things I wish everyone would consider before subjecting themselves to these tests.

1. MRI's MIGHT show something going on.. but often not.. even when things are actually going on. And if they do show something .. many of the idiots can't read the results anyhow... and many of us are told wrong "stuff" because of the idiots who don't know what they are doing. Many Lyme patients got an "MS" diagnosis.. because the white matter lesions resembled what some doctors had seen in MS patients.

We learned it is a good money maker for the test givers... and we learned negative tests were likely to make us lose in the long run... cause even if we were sick, even VERY sick... we were THEN stuck with a test result that said it didn't see anything wrong with us. Boy oh boy was that the best news an insurance company ever heard! As they sat in their ivory towers they stamped on bills... "Nothing showing.. we no pay!"

2. Spinal tap. I'd like to TAP a few jerks who think that is an important test.

It is invasive, dangerous, costly, has side effects that can be disabling to some.. risky, etc. etc. and NOT nescessary for a Lyme diagnosis.

To make matters worse.. it is done to try and PROVE Lyme or not... which is basically impossible. Never has there been any test developed that can prove someone absolutely does not have Lyme disease.

One problem is.. Less than 20 percent of folks who have neuro Lyme have a positive test in the spinal fluid. Many reasons why that happens.. but mostly because the stupid tests can't pick up various strains of Lyme... and are so innaccurate they miss over 90 percent of those who have Lyme.

Then.. if you were to get a positive reading for Lyme.. it was often then called a "false-positive" by many of the idiots who were bent on diagnosing us with ABLS... and ONLY ABLS!

[ABLS- Anything But Lyme Syndrome]

They didn't want to be proven wrong. An ego thing... or EVIL.

And.. if you tested negative.. it was the ducks sure fired way to prove to YOU that you weren't sick and all that you needed was a box of antidepressents and a boot in the hind quarters to get you out their door... AFTER your wallet was emptied, of course.

And to be fair.. lets say this test DID show Lyme. Well the ABLS kicked in.. and folks were told the test results would "remain" positive after the infection was cured.. and again.. that it was a false positive... and folks didn't need treatment. IF they were given treatment.. it was not enough.. and even the wrong treatment more often than not.

Soooooooooo.. you were pretty much out of luck if you went that route.

3. As far as SPECT scans.. they may use dye. They can be dangerous. It tells you something may be wrong.. or not. It is often misread by many of the ducks who don't have a clue. Basically the same story as above.

And.. if this test shows something.. NO ONE can prove Lyme is causing it.. so what the HAY?

Next page...

OK.. let's say you have a sore throat.

NORMALLY you don't have to PROVE you have a sore throat when you show up at a doctors office. He may say.. well take this syrup and 2 asprin.. and call me in the morning... blah blah blah.

But.. let's say for that sore throat.. you COULD do an MRI on it. Not that an MRI would show anything... but you could do it if you wanted. And they could order a spinal tap too. And even a SPECT scan.

Would it help in the diagnosis? Probably not. Is it worth doing? Probably not.

It's a SORE THROAT! Treat it and be on your way.

Same with Lyme. It is endemic. It is all over. If you already know you have it.. rash, tick exposurte, symptoms, etc.. WHY test it to death?

TREAT IT!

Don't waste time on the duck merry go round playing games while the infection spreads. Very simple.

IF the treatments don't work.. and that means having someone who KNOWS Lyme treating it.. and there seems to be something else going on.. and you have a doctor who KNOWS WHAT THEY ARE DOING and KNOWS LYME...

And THAT doctor suggests more tests.. well ok then. Consider doing them.

By the way.. if someone wants to do a spinal tap on you.. ask them what EXACTLY they are looking for.

ALL of the things they will be searching for can be tested by using blood and/or urine. Sooooo.... why do it?

Also please note..

Some of the LLMD's use these tests on patients to help them get documentation for insurance.... and on ocassion to rule out other things. That can be expected. But it is NOT routine.

And sometimes they do them for research studies.. which helps us all. If I were to do these tests.. that is why I would do them.. for research for the LLMD's... so they can help all of us.

Keep in mind.. I am not a doctor. This is MY opinion only. But I HAVE done these tests.. in the "old days" when I didn't know better. Some of them more than once.. more than twice.. and more than 3 times. Knowing what I know now, if I were told I had to do them again... FORGET IT! Wild horses couldn't drag me through that mess again.

Keep in mind to please.. if all these tests were positive by some odd chance.. the end results would be the same if they weren't.

That is to TREAT Lyme disease.

Hope that helps.

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If you get the choice to sit it out or dance...

I also had to have a spinal tap when I first became ill six years ago (I assumed they knew what they were doing). It was the worst mistake I ever made, wound up in the hospital for four days.

I just became ill again and of course they recommended the spinal tap again but I refused. I know I have lyme and I believe that they know they will never find lyme in my spinal fluid but they like to prove it's not there.

I also had MRI's but they weren't that bad as long as my insurance pays.

Never had a brain spec.

Of course this is my opinion but if you do a search here you will find many who agree concerning the tap.

Best of luck to you,
Scott

I had more MRIs than I can count and, though I had become a total idiot and had many neuroLyme symptoms, they showed nothing for many years.

My Brain Specs have helped me explain what's really going on but they were read by 2 different radiologists. One said I had Lyme. The other said I used drugs (I don't).

Tests have their pros and cons.

quote:

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Originally posted by Tnagel:
I have a freind who is a DR and is really concerned that i did not do these tests before starting abx, but I went to two DR's and none of them suggested it. Did you all get these tests done? and when is it necessary?

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Well, I'm really GLAD I had an MRI or I might never have known I had Lyme.

My headaches were so unbelievable I thought I must have a brain tumor.

Some REALLY smart radiologist read my MRI and said "multiple foci of deep subcortical white matter lesions consistent with Lyme disease."

Little light goes on in my head where I go, "Aha! That must've been that little tick that made that little ring that took a long time to go away!"

The hard part was convincing the neurologist.

I DID submit to the evoked potentials test. I even submitted to the spinal. (Came back with elevated proteins, otherwise OK.) The spinal headache was horrendous for about four days, then I got a gift: several weeks of honeymoon: absolutely no headaches. I guess they removed some pressure from my brain.

Would I do the spinal again? NO WAY!!!!

I think the MRI is a positively great idea for everyone who can do one to rule out anything bad in your brain, especially anyone with head pain. The rest of the tests, especially the invasive ones, give 'em a wide berth!!

Michelle M

Or, you could through your family GP, but he would likely be closely monitored and continaully questioned by his MD governing body. It would cost about $150 a day out of your personal pocket.

My ID doc wanted a sinal tap. I had one done by a neuro. I had asked specifically for a WB lyme test. It had come back negative.

The ID doc actually asked me nicely if I would please reconsider my "no" reply. Well, it turns out, the neuro doc did NOT do a WB lyme test as he assured me he had done.

I will post the new test results when I get them BECAUSE...this ID doc, altho not 100% convinced of lyme, did say something pretty catastropic has hurt my brain (30-40 lesions and big cerebellar disruption, and he wants to know what it is/was. His professional curiousity is being tweaked and this is good for all of us!.

So, in answer to Tnagel's post:
If your gut tells you you ID doctor or whatever doc is truly, professionally inquisitive, perhaps testing is not such a bad thing, as first suggested by Tincup.

And becuase lesions and cerebeller stuff showed up that supported my neuro/cognitive symptoms, I was finally able to get a small disability. BUT PERHAPS MORE IMPORTANTLY, it helped me believe in myself a bit more. My ego has been so smashed around I forget that I am still a good, worthwhile person.

While a SPECT scan cannot be used ALONE in diagnosing lyme disease, and can be negative in neurolyme, a very positive spect scan which shows moderate to severe hypoperfusion in the brain is very useful scientifically in that it establishes an ORGANIC basis for what is going on. For instance, consider the all too common case in which a patient is suffering neuropsychiatric problems, has negative blood tests not just for lyme but for everything else for instance hemochromatosis, syphilis, etc. the physician is about to send you back to the mental hospital but he decides to do a spect scan first, and discovers intense hypoperfusion. Now, although we cannot say for certain you have lyme, at least your doctors are convinced of the likelihood that your problems are ORGANIC. And this is the scenario of seronegative lyme, which can be a killer. Once everything else possible has been ruled out, you treat with abx and follow up with repeat spects to see if objective improvement takes place.

quote:

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Originally posted by Tnagel:
Once you strat antibiotics can you have the tests? Or would it change them?

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Well, since the goal is to reduce of get rid of the lesions, or improve hypoperfusion in the brain, then certainly the earlier you have MRI or SPECT the better, as a baseline of sorts. Mine was more diagnostic than as a baseline, since I didn't know what was wrong with my head, but it will work as a baseline for me now that I know why I have them.

Here's my experience with a lumbar puncture...
It was, by far, the worst thing I've ever agreed to. (A shot of demerol, while it did make me very happy for about a half hour did nothing for the pain during or after.)

Spinal fluid leaked and I was started on rocephin and given a steroid which didn't work to stop it. And another steroid the next day which, thankfully, worked.

A 3 day hospital stay for testing became 12 days of the worst internal headache imaginable. I was sure my nose would blow off across the room and frankly wished it would.

I realize everyone is not as "lucky" as I am. It was not fun.

Oh, naturally the test was negative, low odds of catching the buggers on the day they're touring your spinal fluid, anyway.