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» LymeNet Flash » Questions and Discussion » General Support » Why is this so freakin' difficult?

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Author Topic: Why is this so freakin' difficult?
Giapetto
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Why is it so freakin' difficult to get a positive test? This has gone on for years......i have 90% of the symptoms you all complain of, i had the rash, the fever, the flu, all the dizziness, memory loss, creaking neck, vision issues, ALL OF THEM AND THE REST OF THE LIST TOO, But still, the good old CDC favorite test just can't seem to show lyme.
Anyone else have this problem or is it just me???

giapetto

[ 10-19-2011, 05:18 PM: Message edited by: Lymetoo ]

Posts: 37 | From Louisiana | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Robin123
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Hi - if you had the bull's eye rash, that means you have Lyme for sure.

Are you asking about the ELISA screening test or the Western blot IgM and IgG antibody tests?

No, it's not just you - it's a systemic problem. The ELISA screening test is about as good as a coin toss, compared with the AIDS screening test which I'm told is 95% accurate.

Also, the Western blot antibody tests do not necessarily show positive even though we may have the illness. Take a look at http://www.canlyme.com/seronegreasons.html - it lists 27 reasons why we may not test positive even though we have Lyme.

A new test has been recently developed to be culture-specific - ie, actually be able to culture the organisms, but it's not quite ready for the market, and may be a bit more expensive since it's new.

If you don't have a Lyme-treating doctor yet, you can post in Seeking and people will pm you.

One more thing - I am able to clear all Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory antioxidant juice that cleans up the free radicals produced by the inflammation. It's sold in healthfood stores and online. If you try it, go slowly and drink water also.

Posts: 13084 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Giapetto
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Robin..thanks for your supportive post. I was bitten in 1985 before the local Docs in Michigan knew enough to deny that there was L D.......just professional stupidity then. I got four days of Tetra, then the test, neg. of course. A year later, i was in lots of pain.....got a neg test. put it off for 26 years and started having more symptoms, (by now i have learned to live with the pain).....and can't get a positive test, so no treatment. don't know WHICH test was done, but gave blood on Monday and got the results today, Wednesday. I went blind a few years ago, ended up with human tissue transplant corneas in both eyes. still have double vision and lots of pain. not sure drinking anything but Tequila might help at this point. this is soooooo frustrating. and not LLMD even remotely close to me here. crap!
Posts: 37 | From Louisiana | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
TF
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If your blood is sent to Igenex in California for testing, you have a much better chance of getting a positive test.

If you test for lyme, babesiosis, and bartonella, you will likely test positive for at least one infection. That is proof that it is lyme also, because all 3 of these infections are found together.

It will cost you about $650 to do all those tests. If you happen to have Medicare, it won't cost you anything.

Their website is igenex.com and they are happy to talk to folks on the phone also. You just need a doctor to sign off on the tests and someone to draw the blood and process and mail it as instructed by Igenex.

Make sure the blood is drawn on Mon, Tues or Wed as you do not want the blood to sit in the post office over the weekend. That can give a false negative result.

However, if you get a positive test, then you need good treatment. Hey, you need a lyme doctor regardless of the test results. So, if I were you, I would focus on getting to a lyme doctor.

If you get positive Igenex results, the non-lyme doctors will not treat you properly and you will still be sick.

So, the more important thing to work on is to work on getting a lyme doctor. A lyme doctor doesn't need a positive test. He will treat you based on your symptoms. Lyme docs know that the tests are not very reliable. They make the diagnosis based on a discussion with the patient and regardless of the test results if tests come back negative.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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What a sad story - unconscionable, as far as I'm concerned -

To add to what TF suggested, if you qualify as low income, you can get IGeneX testing for 75% off, through www.lymetap.com.

I agree with TF - if you see a Lyme-treating doctor, they will work with you even if you don't have a positive test in hand. With some treatment, you may be able to feel more comfortable.

Like in my case, oral clindamycin took away the pain completely. We're all different when it comes to treatment and what's going to work to ease symptoms.

And since you say you have double vision, well, you probably have nothing to lose by doing a trial of mangosteen juice and seeing whether it can help. You'll know pretty quickly whether it eases eye symptoms. If you don't have any healthfood stores nearby, vitacost sells cheaper juice blends online.

I'd say you should find a Lyme-treating doctor to work with - ie, post in Seeking for referrals.

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John S
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He could have STARI.
Posts: 743 | From New York | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Lauralyme
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It's experimental but a person could try a rife session prior to a test.

--------------------
Fall down seven times, get up eight
~Japanese proverb

Posts: 1146 | From west coast | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by John S:
He could have STARI.

Same treatment as for Lyme.

Did you try to get on the waiting list for the LLMD in La??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Giapetto
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Lymetoo, i have not contacted him yet...at about $400 a visit, no insurance accepted and a 6 hour driving round trip i'm having to give that lots of thought.
Posts: 37 | From Louisiana | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Might as well get on his list. He's not taking patients right now. I would think he's got a list. Maybe you can save the money by then.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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