Interpret Bloodwork Results?

[RheaverRat]

Hi everyone,

I went through a string of serious illnesses a few years ago, and while they were searching for the cause, they discovered that I had Lyme disease, and they weren't sure how long I'd had it. Because I was suffering from mono, they didn't put me on any kind of antibiotics for the Lyme, and after I finally recovered from everything that was going on, it kind of fell off the radar and went untreated.

Flash forward two years, and I've been suffering from a large number of symptoms that point to thyroid disease (including multiple nodules, one large enough to cause swallowing and breathing problems). GP and ENT have run a series of blood tests, and ENT ordered a number of scans, biopsy, MRI, etc. Because everything has come back "normal," ENT initially believed my problems were most likely coming from the Lyme because it went untreated.

I have a meeting with the ENT next week to discuss everything in person, and talk surgery to remove the lobe with the large nodule, but I was hoping someone could help me out. So here's my question. I really feel like my problems are in fact my thyroid, but I don't know how to interpret the Lyme tests I've had done. I can post two years ago, and the one he ran again in February.

Test was labeled "BORRELIA BURGDORFERI AB (PT; SER; QN; )" if that helps.

2/27/15          0.07        Range: 0.00-0.74
4/17/2013      1.96


Thanks for any help anyone can provide!

[JackieCalifornia]

You are quite welcome --

In some states, the medical boards are very strict about what docs can and cannot do in diagnosing and treating Lyme, so if you happen to be in one of those restrictive states, try emailing to

                              contact  [at]  ILADS  [dot]  org

or just search for

                                     ILADS referral

Tell them what area you live in ("near Philadelphia PA") and how far you can travel ("50 miles maximum travel") and they can send you names of docs who are members of ILADS.

Being a member of ILADS (International Lyme and Associated Diseases Society) is not a guarantee of a solid doc, but it's a good place to start.  There's no test the docs take to be a member, so I occasionally hear there are ILADS member docs who are ... kind of far out there.

We don't post Lyme docs' names in public here, but can communicate through private messages through this system.  You could post a new message here something like 'Need LLMD near Dallas TX' and then someone with a suggestion reading here could send you a note through the system, so that the doc's name is kept quiet but you get the data you want.

Best wishes!  Let us know how you do.

[RheaverRat]

Thank you so much, that was incredibly helpful! I'm definitely going to take your advice and seek out a Lyme specialist to see if we can get a clearer picture of what's going on :)

[JackieCalifornia]

Welcome to MedHelp Lyme!  Sorry you are here, but glad you came.

I'm not medically trained, but because there is evidence and suspicion that Lyme may be present, I would take your test results to a Lyme specialist for a review.  It's good that your docs were willing to test you for Lyme, but many (most?) non-Lyme-specialists do not know what to do when faced with positive results.

Your test results from 2013 to 2015 have declined, which nonLyme docs might attribute to an old infection that is fading away.  From what I read, the situation might look quite different to a Lyme specialist, because Lyme bacteria have the ability to suppress your immune system, and the two test results you posted are measuring Borrelia Burgdorferi AB:  that is, antibodies ("AB") your immune system is making against B.Burgdorferi, which is the scientific name for the bacteria that cause Lyme disease.

===>>>   A Lyme doc would consider whether it's not a case of your immune system killing off nearly all the Lyme bacteria, but the possibility that the Lyme bacteria are ***suppressing your immune system*** so that the standard tests (which measure your immune system's activity, not the presence of Lyme) are no longer as positive as they were.  

A regular, nonLLMD doc would not know, understand, or credit that possibility because they are taught otherwise, and that is the problem in the Lyme world:  more recent research shows Lyme to be not like regular old bacteria, but rather like syphilis, which is in the same family as Lyme.  Syphilis can go quiet, too, for decades, doing its dirty work in the shadows, but still causing very serious issues like dementia.  Whether Lyme results in dementia in the way that advanced syphilis does, I don't know, but have often wondered if the rise in 'Alzheimers'-like symptoms is really Lyme at work after many years.

Not trying to scare you, but to open up the possibilities.  A Lyme specialist and your current docs may see things very differently, and in your situation, I would take all the past test results for a consultation with a Lyme specialist.  Lyme docs also use a different test in addition to the ones you have likely had already, which looks not for your immune system's reaction to Lyme bacteria, but instead looks for traces of Lyme bacterial DNA in your blood.  That is direct evidence of infection, instead of the indirect evidence of the Western blot/ELISA tests.

Let us know if you have any questions, and also what you do and how things go, okay?  Take care.