Bloody Lymey

A Blog About Living with Lyme Disease

What Now??? [Reaching a Dead End in the Diagnosis World]

on September 1, 2012

Three weeks ago, I went to a Rheumatologist for the first time.  Actually?  I was feeling pretty good, and wondered if even going was a waste of time.  However, maybe it’s good for him to see I am capable of “being fine,” and he can rule out hypochondria.

He asked for my history, but really didn’t want to hear about my Lyme Symptoms other than the joints.  I was being very concise – and isn’t that hard to do with our crazy zigzagging symptoms that chart their way through neurology, endocrinology, digestive, cardiology and skeletal ?   Basically no system in my body has been left unharmed.

“Oh, I bet you and your doctor think you have ‘Chronic Lyme Disease.'”  This was a sentence.  NOT a question.

I calmly explained that I am not sure on what he would call it but that I was a perfectly healthy, very athletic person prior to contracting Lyme Disease.  I added that while I was diagnosed 4 years ago, my symptoms predate that by one or two years.    In my doctor’s defense, I added that she is a skeptic of the “Chronic Lyme” terminology [and I swallowed hard before saying that. It was a hard sentence to bring myself to say].

He nodded and asked about my treatment history.  He asked what, other than Ceftin, the specialist had used.  I shrugged and shook my head.  “She put me on Low Dose Naltrexone,”  I added feebly.  He asked about opiate dependency (?).  I reiterated that it was a mere 3mg.  He shook his head.  I defended it, firmly stating my nerve pain is pretty much gone while I’m on it and I NEED it.  My GOD, don’t let that man take away my LDN!!!

He asked how long I had been on Ceftin. I told him I was on clusters of treatment for it:  3 months here, 6 months there ……. “I lost count after 18 months.”  He was very vocally appalled by this. He asked the dosage and when I told him 2,000 mg, he dropped his clipboard.  He asked if I was sure ….. that they were two 500mg tablets twice per day.  He asked about a medication – I forget its name.  I said no.  “It contains quinine,”  he added.  I reiterated I had not been on it.   He knew about the preliminary Doxycycline treatment.

In the end, he ran some labs.  While the young man with the spiky hair drained my arm, I noticed a cluster of test tubes.  Fifteen in all.  I finally got the results:  all normal.   It was a short message on my voicemail.  “Everything’s okay.  No changes to your meds.”  My next appointment is in October.

The tests ran the gamut from vitamin deficiencies to medication-induced lupus and R.A.  I think the labs gave me unfair cause for optimism.  I think deep in my heart I hoped that they would find something more readily treatable.  I hoped from some deliverance from Lyme Disease.

I think deep in my heart I knew that another diagnosis would have been too easy.  I think I fantasized about some treatment existing for me that would help me be okay for the most part.  While I feared steroids being a part of the equation (they gave me prednisone before and the “irritability” promised as a side effect was more like rage), I hoped for something more than what I have now.

My diet is helping, yes , yes, yes.  But I feel like I’m on shaky ground.  How long will this last?  When will the other shoe drop?

In other news, my sister’s wedding is today.  I got my monthly visitor the day before yesterday and I’m humongously bloated.   The bridesmaid dress that fit last week following my diet (it fit when I bought it and then I ballooned and then I lost the water retention again) is very snug today and I cannot zip it myself.   I can pinch the top of it together and am hoping very strongly that later someone can get it up for me.

So, Dr. Rheumatologist, here’s another piece of the puzzle.  No one seems able to answer what’s with the water.  And I keep mentioning it.  Why does no one care?  It’s not a few ounces, it’s not a couple of pounds.  I keep cycling between slim and feeling like a sausage crammed into too small of a casing.   I keep trying to emphasize to them that it’s not a vanity thing.  It can’t be good for me!!!

But today I’m going to fixate on my baby sister on her special day.  My pity party is officially over.  I’m going to buy a shawl today or some kind of plan B (maybe a shrug or something) in the event that there is some wardrobe malfunction to thwart.  This isn’t how I envisioned the day for me, but this isn’t MY day.    And I have enough faith in my higher power to know that I’ll get what I need today.   We all will.  And maybe…. just maybe …. it will be something we’ll laugh at.  Like in thirty years.  😉


5 responses to “What Now??? [Reaching a Dead End in the Diagnosis World]

  1. Dawn Baggett says:

    Sorry you are having to deal with all of this for so long (as well as my oldest daughter, and now another daughter). You have a wonderful attitude and great faith; have a great day!

    • Becki says:

      Dawn, thank you so much. My AA sponsor beat that attitude and faith into me. 🙂 By nature I’m a very negative person and there’s no way I’d be as okay, as “sound” as I am capable of being today. Thanks again and I’m praying your daughters come out unscathed.

  2. Here’s hoping the wedding was great and you had a lot of fun and no dress malfunctions. I totally agree with you about the water weight gain – my ankles even swell and I try to think if I ate something I wasn’t supposed to, but I am pretty strict in adhering to this low-amylose diet. I’m seeing a new LLMD this month and she has Lyme herself. I will definitely see if she has an answer to this problem. I also see my neuro-lyme doctor who is going to do the new Borrelia Burghdorff test ($600) and if it comes back positive, it will become a medically covered diagnosis. As I have been off antibiotics and probiotics for over 2 months, the test should be accurate.

    • Becki says:

      Oh, the wedding was phenom’. My sister zipped up my dress – no harm, no need for pins or shawls. 🙂 I got all teary eyed when my little sister came out in her dress. That made my nose GUSH. I had no tissues. LOL. What a mess. and all the photography going on that day. Ha ha.

    • Becki says:

      Good luck with your test. I’ll be thinking about you. ❤

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