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Wherein you will find posts with humor, photos, reviews, occasional rants and journalistic entries of interest to me alone but that I hope will touch you, the reader, in some way. I remain sincerely yours,
A Work in Progress

Saturday, June 28, 2014

A Crack in the Ice

Mike and Rowan and I headed back to NYC to see Dr. Raxlen again last week.  It's a 3 hour drive to New Haven and then another almost 2 hours on the train in to Grand Central Station.  I really like the train and wish we could take it all the way but it's too expensive.

We grabbed take-out at the station and took a cab to the Lyme Medical Resource Center where we enjoyed lunch on the steps and then went on in.

When we walked into his office he was perusing her files.  He was snorting at some of the things other doctors had written up about Rowan.  Specifically, that she "has repetitive motion bursitis" when she was 15.  He said there is no repetitive motion in a 15 year old that would cause bursitis, they are 15!!!  He was also fuming about the fair few who told her that if she lost weight she'd feel better.  He is such a good man.
So we all sat and he spoke with Rowan, going over how she feels, her current symptoms and the like.  When she shared that her light sensitivity was improved, as in she no longer runs for her sunglasses and closes all the shades in the house, he was greatly encouraging.
He remarked that she was like a frozen lake, layers of ice, and slush and that while we were nowhere near water, there are "cracks in the ice." 

Bartonella is still her biggest issue symptom-wise and he added IV Zithromax to her meds to pulse on the three days a week she isn't doing IV Ceftriaxone.  He also added a new medication to help her irritability and neuro issues with Bartonella as well.  Added a supplement and changed amount on a few others.  He also wants her on IV Glutahione but insurance won't cover that one so I am trying to find it somewhere we can afford it still.  We go back to see him again on August 12th.

In the meantime, Jenna is on Month Two of her oral protocol and we just added in a loading dose of Atovaquone for Babesia this morning.  Her stomach is upset a bit but so far so good.
We still need to run her blood-work at Immunosciences soon for co-infections.   She goes back to the doctor on July 3rd.

She had her first cello lesson while we were in NYC, I was so sad to have missed it.

Our very favorite Book Sale on the Green starts on July 2nd, we are really looking forward to it.  We always go on the first day and the last when it is "fill a bag for a buck" day.  Our dear friends from Denmark arrive the 11th for a month and we can't wait to have them here.  Summer is in full swing, such as it is for us.  Lots of resting, reading, binge-watching Netflix.  Jenna and Mike started their annual gig doing campfire songs and s'mores at a local motel this week.  Gardening is good, the tomatoes are looking fabulous this year and we've already harvested beans and zucchini.  We have some family gatherings to attend that we are looking forward to as well, especially seeing my niece who is coming in for a few days from California.

If you or someone you love has Lyme you have to be your own advocate, get educated.
Understand the flaws in the testing and how to read a western blot.
KNOW that if your test is CDC negative, the lab will mark it negative and it shouldn't.  
That is where we lost TWO YEARS in the battle.
Find and go to a Lyme Literate MD. 
Get this book, read it, highlight it, underline it and go in armed with real information.


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