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How long did it take you to get + tests?

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Posted 5/20/2015 5:17 PM (GMT 0)
I see many people on here had symptoms but didn't get a true + for a while. I have argued with the pediatrician that the standard ELISA/Western Blot isn't a diagnosis of +/- since the tick bite has only happened about a month ago and please please just diagnose on the symptoms and give my child some antibiotics. The Ped seems pretty sure that the negative test can be trusted and her symptoms must be from another infection. So I would like to know if many of you got negative tests first then turned positive later on? How long from beginning of symptoms did you finally get a + test?
Posted 5/20/2015 10:31 PM (GMT 0)
Hi kaybub - So sorry you're getting the run-around from the Pediatrician.

A tick bite plus symptoms should be enough to get treatment for your child.

I'm assuming the test was one other than Igenex lab?
Even though it was negative, were there any + and IND bands?

If so, please know that they are not reliable. The Igenex lab is the best lab for testing.

You can go online and order the test kit yourself...take it to a Dr. for a signature and then have the blood drawn at a lab...send it off by Fedex...and three weeks later, results.

Please consider finding a Lyme Literate Doctor for your child. He/she will take you seriously.

We can help you find one...just start a new thread titled: "Looking for LLMD in/near______" and insert your town/city and State.

This forum is a great place for support, and answers to questions you may have. Lots of informative people here to help you.
Posted 5/20/2015 10:35 PM (GMT 0)
And to answer your question. A year after symptoms started, I was tested here in Canada...and the first stage of the 2-tiered test was negative, so the Western Blot wasn't done.
about two months later, I re-tested through Igenex and got a positive test.

Many, many people do not get positive test results...and they DO have lyme disease.
Posted 5/20/2015 11:06 PM (GMT 0)
Do NOT trust a doc that thinks these tests can be trusted. You will almost certainly live to regret it. The best test that we have that is commonly used -the Western Blot- is only 50% accurate - that means that half of those with a Lyme infection were missed!!

The next test that is commonly done is the ELISA - which misses up to 70% of those with the infection.

I was infected at the age of 7 and wasn't even diagnosed until the age of 44 - it doesn't pay to wait. I had my life sucked away from me. Please do not wait for a doctor that is obviously not educated on this to decide to treat. I treated with high dose antibiotics for a full year before I finally had a positive Lyme test - and then the CDC ignored it.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org/​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​
Posted 5/21/2015 1:07 AM (GMT 0)
kaybub

While you are looking for an LLMD, please consider giving your child doses of Olive Leaf Extract (you can find it at most health food stores, Whole Foods, Henry's, Sprout's) every day for about 5 weeks, through the lyme bacteria's life cycle, which is around that long.

Olive Leaf Extract helps boost the immune system, thereby helping it produce more detectible antibodies that the ELISA and other serology tests (Western Blot) rely upon, which should help produce a positive test result for your child.

As Traveler mentions, these tests are not reliable because they rely upon a highly functioning immune system. Yet the lyme and confections do a great job attacking white and red blood cells, rendering the immune system very challenged.

My ELISA came back negative. I took OLE for several weeks, retested and now have CDC positive test results. But my LLMD also gave me a solid clinical diagnosis and we were ready to start treatment; the tests were necessary for insurance purposes.

Please post any other questions if you have any.

p
Posted 5/21/2015 9:25 PM (GMT 0)
Sounds like your daughter might have been tested too early too. It takes 4-6 weeks before antibiotics to Lyme will show up. She should also be tested for all coinfections. If she was bitten by a tick and is already showing signs, she needs to be treated ASAP. I would get her into several Drs. Close to you right away. I would think someone would be willing to treat her for at least 3 weeks. Also set up an appt. with LLMD to follow up with and continue treatment if need be.

I test negative for Lyme every time and have been tested every 3 months for 3 years. I've had a band or two come up, but that's not considered CDC positive. I did find the tick bite and a rash and came down with symptoms about 2 months later with Classic Lyme symptoms. Therefore it was pretty clinically obvious that I was dealing with Lyme. Turned out I have Bartonella and Babesia as well.

I really hope you can find someone to treat her right away. Early treatment is key and should happen within the first 2 months.
Posted 5/22/2015 10:49 PM (GMT 0)
Thanks everyone . I do not have the test result so I can't say "how" she tested. The ped ordered the Elisa & western blot and my lab is Quest. So not sure if the Elisa was neg and they didn't do the WB or did both and it was negative by their standards. I can't seem to find an LLMD that is in my insurance plan. I'm thinking I will just have to pay out of pocket for this. She has an appt at the ID doc at children's but I'm afraid I'll still get the run around "oh she doesn't have a +" from her too. I took her back to ped on Monday and had more lab work done CBC as well as testing for 4 common co-infections of Lyme - still don't have the results from that. I plan to ask for copies of all the lab results myself. I did start the thread looking for LLMD and have searched the websites so I have many good names but none that are in my insurance. One is in my insurance at a pediatricians office and I called to make an appt and was told she doesn't see "lymes patients" at the office I have to go to another office and they don't take insurance ? Why would someone not be allowed to practice caring for lymes patients in an office that takes insurance ?
Posted 5/23/2015 12:53 AM (GMT 0)
kaybub

A few more suggestions:

Don't pay for any lyme tests unless they are Western Blot, sampled at a LabCorp and sent to Palo Alto IGeneX Lab in CA.

Don't waste your time w/ an ID doc w/out CDC positive test results in hand.

Most LLMDs do not participate in insurance plans (the more you read about vulnerabilities of LLMDs, you'll understand why). I would bite the bullet and pay out of pocket to get your child in to see someone ASAP, and in the interim you can search for an LLMD on an insurance plan. I found my LLMD and switched to the only healthcare plan she participates in. Was a pain but can't complain that she accepts insurance.

It's great that the Ped MD took additional labs, they will be very helpful to an LLMD. Most people have more than just the tick borne infections going on.

Hope this helps. Please let us know how things progress.

p
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