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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

Friday, May 23, 2014

Lyme Disease Awareness Month Post Two


I've said it before, I'll say it again.  Educate yourself.
We live in an area where Lyme, more properly borrelia, is epidemic.  We live in a time when political infighting and money are more important than people's lives and the CDC/ISDA guidelines are not only outdated by their own rules, but ignore current science completely.  Where the few doctors who treat Lyme are hounded by insurance companies, targeted and put out of business for using antibiotics "improperly"
This is why the MayDay Project is spending this long weeked protesting outside ISDA headquarters.  Why we protest

Lyme testing and testing for the common co-infections is woefully inadequate.  A negative test may well be NOT and the co-infection testing is even more abysmal.
Here is an entire page on why your test might be negative.  And ask to SEE your western blot, even if it is from a crap lab like Quest, Labcorp or C-Lab.  There may well have been bands specific for borellia but if it isn't a CDC positive, the lab marks it negative even though on their own website, the CDC states that it is a clinical diagnosis and that their criteria is for surveillance ONLY.

Here is a list of symptoms for Lyme and co-infections.  It is called the Great Imitator and you will end of with diagnoses like MS, Fibromyalgia, Chronic Fatigue and others when it may well be Lyme and Co.  You NEED a doctor who is "Lyme Literate.  Find one here., Or here  Most don't take insurance and for good reason, ours is happy to work with our primary care so we are able to get most things covered so far.

That having been said, an update on our Lyme Journey.
Last week, on her 18th birthday, Rowan got her port in for an iv medication called Ceftriaxone for borrelia.  She is still on orals for her co-infections and close to 300 other pills and supplements a week.  The procedure went well but we ran into almost a week of hell when she developed rashes from the surgical tape.  It is almost under control but it was pretty awful for her.

In the meantime, Jenny, who has been symptom free from the Lyme she was treated for in 2011 has become symptomatic again.  She hadn't said anything, really, she is so quiet.  But her headaches, joint pain, stomach issues, eye issues and inability to focus since December, apparently, finally brought her to us.  Needless to say, I was horrified, in more ways than one.  Guilt that I hadn't noticed, sadness because she felt her issues weren't important in comparison to her sister's, more guilt.  We got her right in to the doctor and we are waiting on tests, but she will be going back on orals by next week when we have a follow-up appointment.

So, keep us in your prayers, if you are the praying sort and in your good thoughts otherwise.  If you are new to all this and have questions about borellia, please feel free to contact me.
miklizro at gmail dot com

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