So are you back to work yet?

Lyme Disease Spirochete

Yes.  I’m working on getting well.  Experts say that it takes 1 1/2 to 3 years to recover from Chronic Lyme Disease.  I am 7 months into the treatment process.  I have been sick for just under a year now (beginning with viral hepatitis) and am glad to be on the proper course of treatment.  It just takes time.

In the meantime, I’m keeping busy making jewelery in the middle of the night while sweating, battling a neck-headache, low-grade flu symptoms and either pre-tics or full blown seizure-like tics.  Tics are neuromuscular events where your head, torso, and proximal extremities shake involuntarily for a few seconds to a minute or more.  Thankfully the amplitude of them has diminished to a point where it doesn’t move me around in the bed anymore and the duration of each episode is a few seconds each.  These tics result in jarring to the head and neck and a tremendous headache most of the time.  Sometimes I can sleep afterwards and sometimes I cannot.  Just depends when the entire event of episodes begins or ends, day or night.  After treatment today, these symptoms persisted for about an hour.  Gratefully, the Lord heard my cries for mercy and they stopped.  I passed out and slept for another hour then got up to take a portion of the 61 doses of meds and supplements needed daily.  (Lots of meds and supplements are common in the treatment of Lyme Disease.)  Then I was able to leave the house today to go to two appointments, etc.

It’s amazing what you can do feeling sick.  Most of the time others can’t tell how I’m feeling.  I guess they are used to me wearing no make-up, inattentive to grooming details, flat hair, strained smiles if at all, low muscle tone, and generally dressed in plain clothing.  Remember how I looked a year ago?  I don’t either except for a few pictures in our home office.  Remember how I felt a year ago?  I don’t either . . . .   My husband is very gracious in this regard.  I am blessed.

In reality, no, I’m not working a traditional job yet.  I don’t have the sustained cognitive, physical, or emotional skills needed to care for others in my former job in healthcare.  These are skills healthy people take for granted.  I’m not there yet.   And I’m as frustrated as you are that I am not well yet.  Today I am angry about this.  The lab test results that came yesterday cost us $1135 out of pocket to confirm the diagnosis of Lyme Disease, according to the ILADS standards (see References section).  No wonder they call this the “rich person’s disease.”  It takes a small fortune to get well; I’m thinking $225 per week on average, out of pocket.  And for some reason this information in a black-n-white IGeneX report set off a grief reaction like I had when my LLMD made the diagnosis in January from my clinical presentation of symptoms.  Thought I would be o.k. with things by today.  Guess not.

I do wish to be working again.  I do wish to be back into the stuff of life, having fun, and not just pretending or staying home the entire Labor Day weekend due to illness.  Sorry guys.  I’m struggling right now.  The Lord is with me and I know He hears the cries of my heart.   I trust Him, really I do.  This is my blog and I’m using it to vent today.  Lyme Disease is a bite in the shorts.

2 thoughts on “So are you back to work yet?

  1. Hey lady, I must apologize for my crass language in the wee hours of the morning. I just edited it a bit. We’re gonna make it! Having a better moment right now, wow. Anyways, you might want to look at the link in my references or just go to it directly for protocols. In the U.S., there are 2 major camps for treatment, 1) the Centers for Disease Control and related organizations and 2) the International Lyme and Related Diseases Society. The latter is where most folks with Late Stage or Chronic Lyme find hope. Fortunately my Lyme Literate Physician (LLMD) follows the latter. He offers two major treatment approaches: long term antibiotics and use of a particular Rife technology called a Beam Ray. After getting very sick on an initial trial of antibiotics I switched to the Beam Ray. Expensive, defiinitely. With the Beam Ray, I can treat just about every infection, co-infection, and related illness that comes along. It just takes time to use it, modify things per my response to treatment, get re-tested, and heal. Glad to hear that you have found a great clinic. It’s great to do our own research too. The medical folks seem to keep on their toes when we ask intelligent questions and bring them new info. We’re all in this together in the end. :J

  2. It does indeed suck. I’m also paying out of pocket for my treatment, which is very rare in the UK as the National Health Service takes care of everything normally. But the guidelines are so woefully inadequate that the NHS don’t know how to treat Lyme.

    I’m just hoping that after my treatment I’ll be well as I can’t afford any more.

    How come your treatment is so long? If you don’t mind me asking? Are you on oral or IV anti biotics? I’ll be on 4 weeks IV which is meant to be enough, I’m worried it won’t be, but have faith. I’m at the best clinic in the UK for lyme.

    Hope you start to feel better soon!

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