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Posted 7/1/2015 3:39 PM (GMT 0)
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Post Edited (purplepeach) : 8/14/2016 9:03:06 AM (GMT-6)

Posted 7/1/2015 4:28 PM (GMT 0)
Hi Amiranda,

Glad you found this site, there is a ton of helpful info here, as well as really wonderful helpful people. First, I'm sure we will all ask you "What do you mean, you had Lyme a few times as a child?" Did you have many different tick bites at various times, or was it the same recurring symptoms that you got treated for several different times? The reason I ask is that ticks are known to spread co-infections along with the lyme; I would think that if you were bitten several times there is a greater and greater chance that you also picked up co-infections along the way. Not to freak you out, just going by the facts. You see in the intro thread "New to Lyme" that there are symptoms lists for those infections as well.

I am not an expert in Lyme the way some other members are, so I'm going to skip straight to the more familiar IgG/IgM part of your test:

IgM represents antibodies your body made to a recent, current, or active infection. You show 2 bands positive. The CDC has a silly rule that you must have at least 2 of their very specific numbers showing up Positive in order for the whole test to be marked Positive for Lyme Disease. (Number 23 on your test is specific to Lyme, by the way, it can't be in reaction to any other bacteria.) An LLMD would likely ignore this CDC rule of 2 or more numbers required and say that if your body made antibodies to the Lyme bacteria (band 23), then you have Lyme in your system.

IgG represents antibodies that your body made some time ago, or your body's response to the infection over a period of time. It can indicate a long-standing infection that your body has been fighting for awhile, or a dormant infection that is now reactivated, or can simply indicate that you had it in the past and still carry those antibodies as "scars" or indicators of the past infection. Again, the CDC has the silly rule that 5 of those bands must show up positive to say you have a long-standing or chronic infection. You only have 1, so the test says Negative. You also have other bands that showed up "Indeterminate". This means they didn't show up strongly enough to say they are positive, but there was something there to indicate they've been activated. We tend to think of these as Positive, as they wouldn't be a blip on the test's radar at all if they hadn't shown some activity.

"False positive" test results don't exist in Lyme diagnosis, as the test design is not 100% accurate to begin with (it tests for antibodies, not the bacteria itself). But they will not pick up "false" antibodies--your body must have produced them in response to Lyme bacteria in order for them to show up positive on your test. You should see an LLMD. Please enable your email and I will send you some names. You can also start a new thread saying "Seeking LLMD in_____city" for more responses.

Post Edited (mauihawaii) : 7/1/2015 11:24:32 AM (GMT-6)

Posted 7/1/2015 4:42 PM (GMT 0)
Hi Amiranda,
Welcome to our community!! I'm so glad you found us!

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.

Maui has given you some very good information already, let's see if I can add to it for you.

As Maui said - band 23 is specific to Lyme - A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. Nothing else will turn a Lyme specific band positive other than Lyme disease. So you can see that this is pretty significant.

As Maui also explained, the tests are only looking for the antibodies that are produced when the immune system attacks the bacteria, but with Lyme, the bacteria actually inhibit the immune system so that it can't react to the bacteria. The tests that we currently have were actually designed for tracking the disease, not for diagnosing it.

Also any equivocal or IND that you see on that test are to be counted as positives, as it only means that there wasn't a strong enough reaction to have it be a "fully" positive response - but there were antibodies to that band. Did you have any IND's or Equivocals on your test?

It's likely that you had one infection and weren't treated properly for it and you have relapsed a few times - that's how things usually go for those that don't see a doctor that is highly knowledgeable on these tick-borne infections and have training through ILADS -International Lyme and Associated Diseases Society.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​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 (or change the title of this one) titled something like "Looking for LLMD in the Westchester/NYC area 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 healing journey: www.ilads.org/lyme/treatment-guideline.php
Posted 7/1/2015 5:18 PM (GMT 0)
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Post Edited (purplepeach) : 8/14/2016 9:03:30 AM (GMT-6)

Posted 7/1/2015 5:35 PM (GMT 0)
Great regarding the CDC positive! (It's a hard result to obtain!) I edited my original response slightly so as not to confuse other readers.

Yes, LLMDs *almost* never take insurance. However, once you pay out-of-pocket they will give you a bill to submit to your insurance for reimbursement (fingers crossed). The reasons are political; you can read up on that as well. But pretty much, doctors who were actually treating with antibiotics for long periods were being flagged by insurance companies. They were persecuted for 'abusing' their licenses and 'over-prescribing drugs' to patients. Many of them lost their licenses so it is safer for them to avoid dealing with insurance altogether in order to help their patients. Very sad all around.

I called many LLMDs in NYC and Jersey when first diagnosed. Don't faint, but the initial visit usually lasts about 2 hours and costs anywhere from $650-$950, depending on the LLMD. Follow-ups range from $350-$650. Yes, that is why so many members here mention running out of money or funds being tight. :-( Emailing you now the few names I got that take insurance!

Maui
Posted 7/1/2015 5:52 PM (GMT 0)
Oh wow - that is a lot :/ I would really appreciate those names. Thank you so much for your help!
Posted 7/1/2015 6:02 PM (GMT 0)
We have to know where you live before anyone can suggest a LLMD. No point in suggesting one in NY if you are in CA when they are scattered all over the US. Not every state has LLMD's, but most do.

Also please read through my previous post to find ways to get more recommendations from the area that is most suitable for you.
Posted 7/1/2015 6:58 PM (GMT 0)
Traveler,
I am in Westchester/NYC area. Thank you very much for your recommendations...I will definitely go through them later on when I get home from work
Posted 7/1/2015 8:55 PM (GMT 0)
Ahhh!! So I have emailed you!! LOL! Good!! Just trying to be sure we get everyone covered.

Be sure to let us know how we can be of help!
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