Do I have Lyme or what?

[Jyes]

I am SO confused. It's been over a year of this. I need advice.

August 2014... I stared having leg/groin pain. After months of nonsense my doctor ordered blood work. These were the results:

Lyme Disease Ab (IgG), Western blot
Bands Reported:
(Bands reference range: Nonreactive)
18 kD (IgG): Nonreactive
23 kD (IgG): Nonreactive
28 kD (IgG): Nonreactive
30 kD (IgG): Nonreactive
39 kD (IgG): Nonreactive
41 kD (IgG): Reactive
45 kD (IgG): Nonreactive
58 kD (IgG): Reactive
66 kD (IgG): Nonreactive
93 kD (IgG): Nonreactive

Lyme Disease Ab (IgM), Western blot
Bands Reported:
(Bands reference range: Nonreactive)
23 kD (IgM): Nonreactive
39 kD (IgM): Reactive
41 kD (IgM): Reactive

So the doctor tells me I have Lyme but it's totally fine. I got 30 days of Doxy. I went through hell with the medicine and side effects for all of December into January.

My main problems have been:

Groin tension/pain
My head/eyes/face feels heavy. I get confused. I get off balance. I have wild panic attacks in a crowded room.

I went for more tests,etc. after the meds and actually started to feel better. Then I started to feel crappy again in April. June, the doctor tested for Lyme again.

Here were the results:

Lyme Disease Ab (IgG), Western blot
Bands Reported:
(Bands reference range: Nonreactive)
18 kD (IgG): Nonreactive
23 kD (IgG): Nonreactive
28 kD (IgG): Nonreactive
30 kD (IgG): Nonreactive
39 kD (IgG): Nonreactive
41 kD (IgG): Reactive
45 kD (IgG): Nonreactive
58 kD (IgG): Reactive
66 kD (IgG): Nonreactive
93 kD (IgG): Nonreactive

The IGM all can back negative. So the doctor tells me there is no Lyme. But there are two bands reactive. When I asked, she told me it's nothing. Or it could be a "scar" or something from Lyme... ? I don't get it.

I started to feel somewhat better but I noticed there were times when I'd get fatigued, the groin tension would come back. The head thing would come back. Then I'd rest and it would ease up.

Now we're back in December and it's full blown again. Head, eyes, face, panic attacks, the groin stuff, etc.

I'm torn because some people tell me it's not Lyme and I'm just suffering from seasonal changes. Other people have reached out to me and tell me that Lyme NEVER goes away and needs constant treatment, etc.

As far as when I got Lyme... I don't know. I never saw a tick, never saw a bite, rash, etc. My only saving grace is that after a surgery in March 2014, my doctor did a Lyme test because I was tired all the time. That came up negative. So worst case, somewhere between March 2014 and December 2014 I got Lyme because December 2014 is when it showed up.

I am so confused. I don't know what to do next. My doctor doesn't want to hear anything else about Lyme because she feels it's gone. Yet when I try to research those two active bands, I can't figure out what they mean.

Any help here...? *sigh*

[JackieCalifornia]

Welcome -- sorry to hear about all this, but you're in good company.  There is a lot of conflict in the medical community about Lyme, and many docs are following older views on how to diagnose and treat Lyme and other infections also carried by the 'Lyme' ticks.

Here are a couple of questions/comments, based on your test results above -- I have copied your data from your post above, and then put in arrows like this:  [---> to point to my comments   Note that antibodies are the molecules your immune system makes to attack and kill the Lyme bacteria.  The abbreviation for 'antibodies' is 'Ab', which you will see below in two sets of data:

         "Lyme Disease Ab (IgG)" and "Lyme Disease Ab (IgM)"

IgG is the abbreviation for Immunoglobulin G, and
IgM is the abbreviation for Immunoglobulin M.

IgM is the effort of your immune system to kill invaders in an EARLY-stage Lyme infection, and IgG is the same effort of your immune system, but against LATER-stage Lyme infection.  

IgM and/or IgG mean that Lyme bacteria are present, but the difference between IgM and IgG help the doc know where you are in the Lyme infection, which could help guide the doc in setting up a treatment plan for you.

Okay, now on to the next step -- my responses to your text below are in all capital letters and with asterisks, like this:  (*XXXXXXXXX*)

==========================================
Lyme Disease Ab (IgG), Western blot

(--This focuses on your immune system's reaction to the presence of Lyme, if any -- however, keep in mind that Lyme can and does suppress your immune system, so the test can say that you are negative on this test, but it is quite possible that you DO have Lyme despite the negative test result.)

Bands reported on the test (non-reactive means no Lyme infection found ON THIS TEST, but the test may be wrong):

(Bands reference range, according to your doc:  Nonreactive)
18 kD (IgG): Nonreactive
23 kD (IgG): Nonreactive
28 kD (IgG): Nonreactive
30 kD (IgG): Nonreactive
39 kD (IgG): Nonreactive
41 kD (IgG): Reactive (*THIS MAY OR MAY NOT BE LYME*)
45 kD (IgG): Nonreactive
58 kD (IgG): Reactive (*UNCERTAIN, BUT MAY BE LYME*)
66 kD (IgG): Nonreactive
93 kD (IgG): Nonreactive

Lyme Disease Ab (IgM), Western blot test:

Bands Reported below (according to your doc's thinking, the results are:  "Nonreactive", and therefore NO Lyme.  However, see results below in this paragraph:)

     23 kD (IgM): Nonreactive
     39 kD (IgM): Reactive (*POSITIVE FOR LYME DISEASE*)
     41 kD (IgM): Reactive (*MAY BE POSITIVE FOR LYME, OR COULD BE ANOTHER REASON*)

I'm not medically trained, but I would want to know why the two reactive bands above (39 and 41) are being ignored.
---------------------------------------------------------------------

Then you say, "So the doctor tells me I have Lyme but it's totally fine. I got 30 days of Doxy."  Well, at least the doc was honest about the test results ... HOWEVER his next move, to put you on 30 days of doxycycline, is (to my understanding) not particularly effective unless your Lyme infection is very very recent.  It is not possible to know with certainty how long you have been infected and/or re-infected, so that means the doc should perhaps not lean only on a very narrow test result that could be in question.  It's what I would want to know in this situation.

You say, "I went through hell with the medicine and side effects for all of December into January."  Side effect could well mean that the antibiotics were *effective* in killing the Lyme bacteria.  Did the doc talk to you about that?  The reason you might feel temporarily worse is that if the antibiotics are killing the bacteria, the bacteria is spilling its irritating contents into your body, and you can feel lousy for a while.  
===================================================

I personally went through 20 well-trained MDs before getting a diagnosis of Lyme disease and babesiosis (both carried by the 'Lyme' ticks), and Doc #20 sweetly said to me, 'But you could not possibly have Lyme ... I have patients with Lyme, and they are ... all near death.'  

WHAT??!!  That made zero sense to me, and it just so happened that an old friend had had Lyme a few years before, and because was a trained scientist, she took herself to a Lyme specialist, who diagnosed and treated her case of Lyme, and got her well.  Based on my old friend's experience, I found another doc -- this time, a Lyme specialist --  who diagnosed me with Lyme and another similar infection that the 'Lyme' ticks often carry.

I was prescribed certain antibiotics effective against those infections, and after several months (not weeks) of treatment, I was clear of Lyme and babesia.  That was more than 5 years ago, and I am quite well still today.  All it took was a wise doc and the right meds for the right period of time.  

In my experience, this split in the medical community is still a big problem, so expecting your current doc to change how s/he diagnoses and treats and for how long may not work.  It's not the doc's fault:  it's what she has been taught.  

If I were in my same previous situation again, I would find a Lyme specialist and take my previous test results to him/her for a second opinion.  MDs who belong to ILADS (International Lyme and Associated Disease Society) are usually forward-thinkers in this regard ... my Lyme doc is a member of ILADS, and you can look at their website for more information.  Like any group of scientists and thinkers, there are bound to be some oddballs, so keep your antennae up and think things through ... if something doesn't seem right, tell the doc your specific concerns, and if you don't get an answer that makes sense to you, then go to another doc ... but FIRST be sure to have copies of all your tests to date.

It's what I would do in your situation, having had Lyme myself.  Sorry I can't give you more uplifting advice ... but the medical profession is in chaos when it comes to Lyme etc., so there is not unanimity among the docs.  

It's definitely worth fighting for.  Best wishes!

[Jyes]

Thank you for responding. I'm trying to find out my next move. It's a difficult process though.