What the Lyme?

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Ticks removed from a dog at a Vet Clinic our daughter works at in Sherman Oaks

So a lot has happened since our last adventure.  Climbing Whitney and conquering my fear of heights, and successfully dodging altitude sickness was a great milestone, made all the more special having shared it with family and friends.  One family member was demonstratively missing though.  My daughter.  My daughter was once an extremely active, vibrant and energetic girl.  Her nickname was (and still is) “Shellzilla”, “Shelbinator” or “The Twister”.  While we still see her as having a vibrant soul with a tenacious mind and attitude, she is not well, physically.  She has suffered with headaches from a young age. Her headaches have progressed from monthly to weekly and for the past three years, to daily in the form of often debilitating migraines.  The headaches have limited her ability to keep up and complete classes, thus dragging on her studies to become a Veterinary Tech from two years, to now four.  Along with the headaches she has “floaters” and dark spots that appear frequently and interrupt her vision.  This has impacted her ability to read in an efficient manner, and especially out loud in class, which through grade school and into Jr. High marked her by her “peers” (and sadly her teachers) as a “special needs” kid. Constant muscle and searing joint pain (she likens it to having glass in your joints and muscles) plague her daily.  Her active life is limited to walking her dogs, which is often even too much for her.  Her skin is sensitive to touch.  It pains her for us to even hug her (and its not because we’re her parents).   We have battled (successfully) with our insurance to see Specialists in an effort to get to the root of her increasingly overwhelming illnesses.  Her brain is “fine” they tell us…nothing to see.  Her optic nerve and eyes are “fine”.  Her stomach and intestines are “fine”.  There is nothing “wrong” with her joints or muscles.  She has tried every migraine medication under the sun, none of which have provided her any relief, with the exception of BOTOX injections.  They only serve to “take the edge off” and reduce the number of hospital visits from quarterly to only twice a year for a shot of dilaudid, the only thing that has proven successful to quiet the pain in her head (and joints as well).  The only problem is that she has to wait often up to 4 hours before she is administered the pain reducing narcotic (it only brings her pain to a manageable 2 in the 1-10 scale).  If she goes to the hospital on her own, they will not give her the shot, as they assume she is a junkie “Jonesing for a fix”.  She feels like her brain isn’t working like it should. She feels like she is in a constant “fog” of sorts.  Her memory is getting poorer and poorer.  In her teens, we figured she was being a “typical teenager”, with selective listening…especially with us, when she would fail to carry out the simplest of requests, saying that she “forgot”.  She has not had a full and rested night’s sleep in years, which we are sure is/has contributed to her on-going malaise.  Earlier this year we switched her to a new doctor, resulting in a diagnosis of Fibromyalgia.  While it was “nice” to finally put a name to it, it still provided no answers.  The recommendation was to “try and go Gluten Free”, like every unexplained illness has some root in products and foods containing wheat.  Her new doctor, at our request, even tested her again (she has had 3 previous tests) for Lyme Disease.  We were told that the results were “negative”.  When we told her Neurologist that we were having her tested for Lyme Disease, he essentially told us we were wasting our time, saying “I’m from Vermont, Lyme’s is an East Coast illness.  There’s no Lyme’s west of the Rockies”, as he wrote out another referral to a Psychiatrist and another Neurological Specialist affiliated with USC.  He is/was convinced her “illness” was literally all in her head.  “Have you tried losing weight?  Are you depressed?”, he has asked on several visits.  Let’s just say knowing what I know now, I would like to give that arrogant young doctor a concussion.  Because he was such an ass, I decided to see if I could prove him wrong.  I knew that Lyme infected ticks had been found in California.  The husband (Jordan Fischer-Smith) of a gal in my Calfornia State Parks Cadet class, had been diagnosed with Lyme’s disease, and in 2009 was in a documentary about it (Under Our Skin).  In the back-country of Crystal Cove State Park, in Southern California (between Laguna and Newport Beach), ticks infected with Lyme’s have been discovered.  So I knew it was out there.  When my daughter was little, we recall removing a tick from her head that according to Shelby she thought was “just a bump”.  She had a few others from time to time, but never did we recall seeing the “tell-tale” red ring (or bullseye rash), so we never thought much of it.  I recall my dad telling us of having removed a tick from himself and it developing a red ring.  He previously lived in Gilroy, California.  He was immediately prescribed a heavy dose of antibiotics, and is presumably Lyme free.   I think in the back of our head, we thought it might be Lyme’s, but we never really knew or thought much about the disease…until NOW.  The thought of Lyme’s really didn’t push its way to the forefront of our thought until I was helping my sister find a new apartment.  We ended up speaking with a potential landlord who suffered from Lyme’s.  She had lost just about everything.  Her house, her career, and her marriage to its debilitating effects.  As we talked, my sister made the connection with the symptoms this woman had described, while having been mis-diagnosed for over 20 years.  Maybe my daughter has Lyme’s.  The gal told us about having her blood tested through IGENEX, and about using the International Lyme and Associated Disease Society (ILADS) as a resource, and that we should seek out a “Lyme Literate Doctor”.  Thus began the research.  Two weeks later, Paul just happened to be talking to his cousin who was asking about how Shelby was doing (she had posted on FaceBook that she was feeling sad and awful – she won’t “friend” me because in her words, “It’s just creepy mom”, but she is “friends” with just about everyone in our extended family but Trevor, Paul and I), Anyhoo… Paul’s other cousin jumped on the phone inquiring as to her symptoms.   Upon Paul telling her, her resounding reply was “SHE HAS LYME!”.  She and her two daughters had suffered from Lyme disease, and have since been treated and for all practical purposes are “cured”.  Considering our most frequent and fervent prayers have been to help us help our daughter heal from her ailments, we were pretty sure this was a sign from God (or the “Universe” for those still on the edge of believing).  Thus began our immersion into what we have taken to calling “The Mime of Lyme”, seeing how this disease [or more specifically, bacterial infection(s)] mimics so many illnesses.  Conservatively we have spent an average of 4-6 hours (each), sometimes 10-12 hours, daily researching all things Lyme Disease.  The good, the bad and sadly the ugly.  And looking at the ugly, we are truly blessed that the disease has not progressed to those stages…just yet.   This disease is a nasty little bugger.  In some ways one can’t help but admire it’s tenacity and craftiness.  How a simple microscopic corkscrew shaped bacterium (spirochete — pronounced, spy-ro-keet) can reek such havoc on the human body is simply remarkable.  Of course, it has “friends”, or rather an entourage of co-infections that seems to accompany it everywhere it goes, that only serve to complicate an already complicated disease.

Our research has led us to believe that the only thing that makes “sense”, with her having not responded to any of the treatments or multitude of medications previously administered, is that our daughter is suffering from Chronic Lyme Disease.  How is this possible if the Western Blot test came back “negative”.  Let’s just say, it wasn’t “Moving Day”.

And with that, we embark on another lengthy “adventure” into the world of Lyme Disease.  As such, I have started another blog site called The Mime of Lyme.  It will chronicle our family’s  healing “expedition” through this disease called Lyme.  I will speak to a parent’s perspective, and as best I can the science behind Lyme (in layman’s terms), and my daughter will post about her up close and personal experience with Lyme.  This will be a fully involved and frankly life and death expedition, that will certainly take months, if not years to reach a destination of optimal health for our daughter.  As such our “wanderings” may become somewhat limited to “short” jaunts.  If we are lucky, we will be able to “sneak” away and do the Grand Enchantment Trail, The Wonderland Trail, The Lost Coast Trail, The Arizona Trail, a Rim to Rim to Rim adventure of the Grand Canyon (March-ish), or a long route to Half Dome (as if I haven’t pushed my heights issues enough) this September. As with all things in life…it depends.  And maybe, just maybe, if all goes well we will be able to hit the Appalachian Trail (AT) in 2 years, if not the Continental Divide Trail (CDT).

Life is Good, with each moment to be cherished.  We like to think that not only is the glass half full…it is refillable!

This entry was posted in Chronic Lyme Disease, Lyme Disease, Mini Adventures, MSIDS, Uncategorized and tagged , , , , , . Bookmark the permalink.

10 Responses to What the Lyme?

  1. Paul Mills says:

    Our thoughts and prayers are with Shelby, you, Paul and Trevor as you continue this challenging journey hopefully leading to a “cure” and better life circumstance. God’s speed Milosch’s and “hugs” from us to Shelby!

  2. Heather O'Gorman says:

    praying for Shelby…

  3. mamarok says:

    Lyme is controversial. Insurance does not want to pay for treatment…there is a cure
    Praying you find the cure for your girl. I know it has been a long time coming.
    Hang in there!

    • Two month into treatment and the good thing is that she feels like “shit”, but in this case it means that the murderous assault on the spirochetes is working. The balance will be to make sure she does not become debilitated by the treatments. We walk a razor’s edge.

      • Mike D says:

        Wow. That’s crazy. So sorry to hear about this, but I’m glad the attack on the bugger is on and I know she is strong! I am praying for things to turn around sooner than later.

      • Thank you. Sooner is always good. We will be happy with any improvement frankly.

  4. Counselor Gus says:

    Wishing the Milosh family the best. Prayers are being said for you! Let us know if we can help.

  5. melmcdona says:

    Wow, sure crazy! Wishing you well!

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