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» LymeNet Flash » Questions and Discussion » Medical Questions » How often to get retested?

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Author Topic: How often to get retested?
xrunnerx2012
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My last test for anything Lyme and co-infection related was October 2012. Should I get another Labcorp and IGeneX test and test for everything again? Or at this point should I just let my doctor keep treating based on symptoms?

I definitely want to get tested for proto from Fry Labs.

Posts: 251 | From Baltimore | Registered: Oct 2012  |  IP: Logged | Report this post to a Moderator
GretaM
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I am a newbie, but in my opinion, save your money for treatment and doc appt. Just continue to treat based on symptom relief.

If treating continues to help you improve, keep treating [Smile]

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
lucy1336
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funny as i just came from my llmd appointment this morning

i had that conversation with my dr

he said i don't want to take more of your money when the outcome will be the same we are going to continue to treat

so though part of me still wants a glaring super duber positive test result i will prob never get one

he also gave me example of his wife who had lyme 10 yrs ago ( yes recovered ) they did a retest because she wanted to ( when dr's wife why not right [Smile]

it came back positive very much.... but she feels great so they are not even treating

guess it goes both ways ???

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sixgoofykids
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All testing can do is show exposure. It cannot show whether the disease is active or not, only symptoms can do that. So I wouldn't bother with retesting if you already have a positive test showing exposure.

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sixgoofykids.blogspot.com

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beths
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Does the IGg ever turn negative?

I thought for bart and babs it will eventually?

Or am I wrong?

Posts: 1276 | From maryland | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Keebler
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No, you do not need to retest for lyme. I don't think you need to be retested for ANYTHING that was positive not all that long ago (16 months in so is not that long ago, relatively speaking).

If you are still ill, still treating, and you have a good ILADS educated LL doctor, you have your answer, not there yet. I know it's hard to hear but treatment can take years.

I don't think you ever have to retest for lyme - unless you are in a good solid remission and then get ill again and suspect lyme.

For now, there may some changes to make, or support methods to explore but, IMO, retesting is certainly not going to help . . .

unless you test for something that has not yet been identified. Again, a good ILADS educated LL doctor will often know what is going on as tests for coinfections can often fail to register, too.

Sometimes treatment for one TBD can "cover the bases" of another. If your LLMD suspects something else, you may just be able to cover all the bases.

This is why the clinical diagnostic skills of a LL doctor (and their continued study) are so very important.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
nefferdun
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I was told by an infectious disease doctor that once you have antibodies, you will always have antibodies so you can be completely well and still test positive.

That is why they can deny treatment when you test positive.

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

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lax mom
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My co-infections went from IgG and IgM positive to negative with treatment.

I was last tested 2 years ago and was recently re-tested for everything.

I am interested in seeing if my Igenex Lyme WB shows additional + bands since I know my immune system is getting stronger.

For me, it's all out of curiosity. I wouldn't take money away from treatment to re-test unless your LLMD had a good reason.

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Lymetoo
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Never! (not for LYME, anyway)

A waste of money and if it comes back negative while you are still sick, the insurance company will deny treatment. (if they haven't already)

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--Lymetutu--
Opinions, not medical advice!

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Keebler
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lax mom:

It's understandable to want some kind of measure.

You say: "interested in seeing if my Igenex Lyme WB shows additional + bands since I know my immune system is getting stronger." (end quote)

But lyme testing just does not work that way. It may reveal some additional detail but it sure can't be counted on to do so. Testing (even at the best lab) cannot tell us all we want to know in the ways that we might think. It just can't.

And, even if it did show some changes, those would be for that one point in time. It would not necessarily predict much for the future.

I am paraphrasing Burrascano, from a DVD of an ILADS conference a few years ago when asked about re-testing.

However, since you had the re-testing done and you await results, it will be interesting to see what comes through. Whatever detail is able to be used by your LLMD surely will be.
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lax mom
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I am through with antibiotics for now as my liver is shot, so I am not looking for insurance to pay for anything.

I have heard that patients have gone from negative to positive at the end of treatment as their immune system revs up and recognizes the infection. I just wanted to see if that were true.

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Keebler
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sorry to hear about your liver. And you make a good point about the test "seeing" it better at this time.

There may be hope for liver regeneration in certain herbs . . .

you say "at the end of treatment" but it sounds like you were forced to stop (?). If so, a rife machine may also be helpful for treatment (it sounds like you are still on the path). Hope you find what you need to figure out the next steps.

And, if I misread and you are all well, that would be so dandy. Still, for the liver, a good ND may have the knowledge to help.
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lax mom
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Oh yes, forced to stop by my liver.

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nefferdun
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Maybe just test your CD57 if you want to know your immune system response. For bartonella, low platelets and sometimes high VEGF, means it is still active. There is one test specific to protozoa, but I don't remember what it is right now.

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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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