Need help deciding to go forward or not

[RKF55]

Hello,
JackieCalifornia suggested I post the test results from my Lyme test and hopefully you folks can help me decide if I need to go forward with the Lyme thing or not. The test was done on 9-30-14, it says:
TSH                                             *1.35                               (0,40 - 4.50)
Lyme disease AB (IGG) WB        *Negative                       (Negative-)
Lyme 18  KD (IgG) Band              *Non-Reactive
Lyme 23 KD (IgG) Band               *a Reactive
Lyme 28 KD (IgG) Band               *Non-Reactive
Lyme 30 KD (IgG) Band                *Non-Reactive
Lyme 39 KD (IgG) Band                *a Reactive
Lyme 41 KD (IgG) Band                *a Reactive
Lyme 45 KD (IgG) Band                *Non-Reactive
Lyme 58 KD (IgG) Band                *a Reactive
Lyme 66 KD (IgG) Band                 *Non-Reactive
Lyme 93 KD (IgG) Band                 *Non-Reactive
Lyme Disease AB (IgM) WB           *Negative                       (Negative-)
Lyme 23 KD (IgM) Band                 *Non-Reactive
Lyme 39 KD (IgM) Band                 *Non-Reactive
Lyme 41 KD (IgM) Band                 *Non-Reactive

So I have no idea what all that means if anything, but I would appreciate any advice I can get.

Thanks

[JackieCalifornia]

Hurrah!  This is progress.  

I know I was pretty anxious when I first saw a Lyme doc -- many different things combined to feeling that way:  my concern that it would be another dead end; worry that there was Something Else going on that hadn't yet been discovered; fear of another clueless doc leading me down the wrong path; etc etc.  

Underlying all those concerns was being a bit afraid of actually having Lyme, but much of that feeling was driven by the infection itself -- it messes with one's emotions and the whole endocrine system.  The good news is that once I got the diagnosis (Lyme and babesiosis), it was a relief to finally put a name to the misery, because I now knew what to do to get well at last.

See how the appointment goes, and let us know what you find out, okay?  We're here, and we've been where you are.  Hang on!

[RKF55]

Just an update: I now have an appointment with an LLMD that was recommended by the FLDA (Florida Lyme Disease Association) on April 21st. I am excited to be finally going to a reconigzed LLMD but am also nervous that they will tell me I dont have Lyme and therfore still no answer to my symptons. But we will see.

[JackieCalifornia]

Correction:   I was typing too fast and left out a word above that makes the sentence not read correctly.  I've pasted it below with the missing word *written inside asterisks* in the last line:

"If that will persuade your family, that's good; if not, then go to Plan B, whatever that may be for you -- moving in with a friend, going on welfare if you are unable to work, whatever -- and *I* don't say any of that lightly."

It's a small change, but it was possibly confusing and sounded harsh.  It wasn't pointed at you.  Take care!  

[JackieCalifornia]

Thank you for posting back -- I did read your comments wrongly.

I am sorry your family doesn't understand, but that's part of the backwash that the medical community has caused.  It's not your fault in any way, of course, and the only question is how to get you to a doc who really understands Lyme and can lay out the reasoning behind a diagnosis for you.  If that will persuade your family, that's good; if not, then go to Plan B, whatever that may be for you -- moving in with a friend, going on welfare if you are unable to work, whatever -- and don't say any of that lightly.  You sound like a strong person trying to do the right thing for yourself and for your family, however much they do not understand.  (Gotta say, your father sounds a lot like mine was ... he meant well, but didn't know how clueless he was sometimes.)

I would contact one of the Florida-based Lyme disease associations and tell them your situation, your positive test results and your lack of funds to pursue treatment (unless you can borrow from friends) and see what the the Lyme association people can offer or suggest.  There are Lyme charities of various kinds, and hooking in to them would be a good thing.  Then when you are well again, you can find a way to pay them back as a contribution, either in time or cash.  You don't sound like a freeloader to me, and I would think others will understand that too.

Your homework is to keep contacting Lyme organizations and explain your diagnosis and your family and financial situation.  It may have been mentioned here that there are Lyme charities (including LymeTAP and Lymelight Foundation) who may be able to help you.  Can't hurt to ask.

Above all, don't give up.  Lyme won't go away by itself, but it can be cured.  I am living proof of that.  

Keep us posted -- we're rooting for you.

[RKF55]

I said that wrong, I do believe I have the Lyme infections, but all I have is this blood test to back that up and the Drs say it is inconclusive. The medical meat grinder I have been thru for the past 16 months has found no reason for my symptons and I get the crazy eye from Drs when I mention Lymes. I aslo have a spouse that is convinced I dont have Lymes because a Dr told me I didn't have it and "surely with all the test I have done they would have found that".
That is why I appreciate you folks on this site helping me try to figure this out and come up with a moving forward plan. If it was not for you good people I would really be pulling my hair out. The way I read your response to the test is that you are convinced that I do have the infections. So again, thank you for being out there trying to help.

[mojogal]

Please treat. I am suffering from being misdiagnosed for so long. The longer you wait, the worse it will get.

[JackieCalifornia]

Your message sounds like you have decided you do not have Lyme or any of its co-infections.  Do I understand that correctly?

If so, would you share your thinking with us about how you made that decision?  

In any event, we wish you the best, and above all:  don't give up.  We're always hanging around here if you want to pass something by us.

[RKF55]

Thank you very much for the help, I have been going to Drs for about 16 months now trying to find an answer to my symptons. I am no closer now than I was 16months ago. However I do know what I dont have. I am the healthiest sick person known according to the drs.

Again, thank you so much for trying to help me get answers.

[JackieCalifornia]

Here are some more notes on the reactive bands you have, a bit more specific than what I wrote above --

     Lyme 23 KD (IgG) Band -- this band is specific for Bb [the Lyme bacterium Borrelia burgdorferi, meaning if this band shows up, it is definitely Lyme

     Lyme 39 KD (IgG) Band -- this is a major protein of the Bb flagellin [its little whip-like tail]  

     Lyme 41 KD (IgG) Band -- flagellin of all spirochetes [meaning it could be another bacterium, or it could be Lyme]

     Lyme 58 KD (IgG) Band -- unknown but could be a heat-shock Bb protein

[JackieCalifornia]

PS sorry if that message is hard to read ... having computer issues.

[JackieCalifornia]

Thanks for the data!  Others here can and should chime in, since I'm not medically trained (all or most of us here are not), but we have all been dancing with Lyme at some level.  

[ITEMS INSIDE SQUARE BRACKETS AND IN CAPS LIKE THIS ARE MY COMMENTS SO THEY STAND OUT]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
TSH                                             *1.35                               (0,40 - 4.50)

[TSH IS RELATED TO THYROID FUNCTION, WHICH CAN BE AFFECTED BY A LYME INFECTION.  THE 1.35 LEVEL SHOWN IS WITHIN THE ACCEPTABLE .40-4.50 RANGE, BUT A LYME DOC MIGHT OR MIGHT NOT INTERPRET IT DIFFERENTLY WHEN READ ALONG WITH ALL THE OTHER LEVELS HERE.  The important thing is for a Lyme doc to make the determination.]  
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
["LYME DISEASE AB" MEANS 'LYME DISEASE ANTIBODIES', WHICH ARE DEPLOYED BY YOUR IMMUNE SYSTEM TO FIGHT THE LYME BACTERIA.

"THERE ARE TWO DIFFERENT LYME ANTIBODIES:  ONE KIND [IgM] IS MADE BY YOUR IMMUNE SYSTEM EARLY IN THE INFECTION AND THE OTHER KIND [IgG] MADE LATER IN THE INFECTION.  THESE TWO CAN OVERLAP, BUT THEY ARE STILL USEFUL TO A DOC TO TRACK WHERE YOU MIGHT BE IN THE INFECTION.  THE FIRST LINE BELOW ('Lyme disease AB (IgG) WB') MEANS THE TEST IS LOOKING FOR LYME DISEASE ANTIBODIES THAT ARE TYPE 'IMMUNOGLOBULIN G' TO SEE HOW HIGH THEY ARE.
  
"BANDS" ARE AN INDICATOR AND MEASUREMENT OF LYME, AND SOME ARE MORE IMPORTANT OR SIGNIFICANT IN MAKING A LYME DIAGNOSIS.  

THE IgG ANTIBODIES AND IgM ANTIBODIES, EACH AS A GROUP, ARE BOTH IMPORTANT.  THEY OCCUR AT DIFFERENT TIMES AFTER INITIAL INFECTION, BUT BOTH MATTER.

THE SPECIFIC TEST RESULTS BELOW ARE BASED ON ANTIBODIES ("AB") ON THE WESTERN BLOT ("WB") TEST, WHICH IS COMMONLY USED:

--- Lyme disease AB (IgG) WB        *Negative   (Negative-)

[THIS TEST HAS BEEN READ AS NEGATIVE, BASED ON THE BANDS BELOW, HOWEVER THERE ARE POSITIVE BANDS BEING IGNORED, NOTED BELOW AS 'REACTIVE'!  

HOW CAN YOU HAVE POSITIVE INDICATORS AND NOT BE DIAGNOSED FOR LYME?  BECAUSE THE TESTS WERE DESIGNED NOT TO DIAGNOSE A PARTICULAR PATIENT, BUT TO TRACK AN EPIDEMIC OF LYME ...

... AND TO BE CERTAIN THERE IS AN EPIDEMIC, THE POSITIVE TEST DATA HAVE TO BE TOTALLY SOLID.  

THIS IS AN INSTANCE OF A TEST INTENDED FOR LARGE POPULATION STUDIES BEING IMPROPERLY RELIED ON FOR DIAGNOSTIC PURPOSES IN A SINGLE PATIENT:  YOU.]
-----------------------------------------------------------------------------------
Following is a list of your bands (IgG and IgM are equally useful) showing results on the Western blot test according to the way your doc and the lab read it.  

'Non-reactive' means that band was not found -- that is, no Lyme infection.  'Reactive' means that band was found, and indicates Lyme infection:
=================================================
FIRST: regarding Lyme Disease IgG (appearing usually later in the infection).

     --- Your lab says this is an overall *negative* result, meaning no Lyme, but noted by arrows below, there are actually *four* reactive (positive) bands.

     --- Details of each band:

Lyme 18  KD (IgG) Band              *Non-Reactive
Lyme 23 KD (IgG) Band               *Reactive        <<<--------
Lyme 28 KD (IgG) Band               *Non-Reactive  
Lyme 30 KD (IgG) Band                *Non-Reactive
Lyme 39 KD (IgG) Band                *Reactive       <<<-------
Lyme 41 KD (IgG) Band                *Reactive       <<<-------
Lyme 45 KD (IgG) Band                *Non-Reactive
Lyme 58 KD (IgG) Band                *Reactive        <<>  However, these tests were designed not to diagnose one person like you, but instead to track the overall population spread of Lyme disease through the country.  To accomplish that, the test requirements are very high, to avoid getting 'false positive' results.

The unfortunate outcome of this is that the test is too often ignored in someone who actually has Lyme, because the 'epidemic' standard has been applied.  

This is a common error, and it takes a Lyme specialist to know how to read the tests properly.  I am NOT medically trained, but given that you have positive signs on your tests, I would take these results to a Lyme specialist for a second opinion.  Be sure to take with you copies of all the tests you have had done already; it can be very useful to a Lyme doc, even if the results looked negative to a previous doc.

Lyme will not go away by itself, but it is entirely treatable.  If you need help finding a Lyme specialist, look for local Lyme patient groups in your area, or simply google/search for -- Lyme Dallas TX -- or wherever you live.

Best wishes!  Let us know how you do --