You have got to be kiddin me! More of us have Lyme!

Four of us now have been diagnosed with Lyme. 

See my first post in November for my detailed story.  I left a bit of detail out of my first post for brevity reasons.   About the same time I got tested my wife got talked into being tested as well.  About 12 years ago (2000) my wife had bad joint pain, and for whatever reason remembers always feeling better during pregnancy.  A doctor had thought she may have LUPUS, but it was never pursued.  Some tests were run, but nothing conclusive.  About 8 years ago (2002), she got a good case of what appeared to be the flu.  It seems that after that she seemed to never be the same.  Mainly GI issues, insomnia, stomach isues, and mild to severe muscle/joint pain.  Her muscle pain continued to increase.  A Rheumatologist ran a Lyme test in 2004 (Labcorp) it was indeterminate for both the Western Blot and ELISA.   Around 2008, the pain was so bad that she was frequently visiting doctors trying to get an answer.  Another Lyme test was ran in 2008, it was indeterminate as well.    The doctors never had a definitive answer, after running batteries of tests. Finally she was diagnosed with Fibromyalgia in 2010.  Lyme still isn’t a topic, I mean, why would it be Lyme.  So, she decides to do Igenex in 2011, and tests very positive.  Goes to LLMD. Doc thinks she may have Bebesia as well.

So, that is 2 of us with Lyme.  We are like, “What are the odds of that?”

Well, one of my children, starting in 2006, has a grocery list of problems.  There is constantly something wrong with him; Nausea, gall bladder pain, can’t sleep, diarrhea, headaches, hyper emotional, claims he can't read….  Because he is so young, we think he is exaggerating, or just doesn’t want to go to bed, or whatever.  In 2009 we had a Labcorp Lyme test ran. It came back negative.  After the other Lyme results in the family, in 2011 we decide to Lyme test him thru Igenex.  Positive.  Go to LLMD.

So, that is 3 of us with Lyme.  We are like, “What are the odds of that?”

Well, another child, starting in 2008, starts to have weird things.  Swollen glands everywhere, full body rashes, Nausea, constant clogged sinuses.  The gland and rash thing cycles a few months apart, but slowly becomes more frequent.  Many doctor visits later, a Lymphoma scare, Allergy tests, etc…Reluctantly our Pedaitrician agrees to run a Lyme test  (Labcorp).  (After my wife argues with him, this guy has a staunch anti-Lyme stance).  Both the ELISA and Western are positive.  Interestingly, Labcorp now returns the Western Blot bands in there results.  Pediatrician prescribes 30 days of Doxy.  Disagreement over treatment ensues, and finally we tell him we are going to take child to LLMD.  LLMD Doc thinks kid may have Bebesia as well.

So, that is 4 of us with Lyme.  We are like, “How on earth can 4 of us have Lyme”.

I am thinking of testing my other children just for piece-of-mind.  Although they don’t have any symptoms, but are younger.

Using our best guesses, trying to figure out when we actually caught it…Wife and kids did not have any kind of a "Lyme rash", that would correspond to a bite, that we noticed.

Here is the best guess timeline...
Me diagnosed positive for Lyme in 1993 (go on 30 days abx)
(get married)
(moved to a different state)

Wife has symptoms begin in 2000 (maybe)
Kid 1 born
Kid 2 born
(moved to a different state)
Wife has symptoms begin in 2002 (maybe)

Kid 1 symptoms start in 2006

Kid 2 symptoms start in 2008
All diagnosed positive for Lyme in 2011

I don’t know what is more unlikely: That we all caught it separately, or did just me and my wife catch it and she gave it to the kids thru birth/breast milk, or did I give it to my wife, and then she passed it on….

Or, is our staunch anti-Lyme Pediatrician right, that we cant all have Lyme, or at most 30 days of abx is enough, and then none of us have Lyme.  The more we have researched, journal articles I have read, I dont see how anyone can have this viewpoint anymore.  The "pro-ILADS" evidence (for lack of a better term), seems to me to be overly convincing, and continuing to mount.  I have read some of the "pro-IDSA" cited journals articles, they arent that strong of an argument.

(BTW; All  kids and wife have responded very well to the typical ILADS treatment guidelines, through an LLMD)

I will say, that in our experience, 3 out of 4 doctors seem to be open minded about the whole Lyme controversy.  I have been a little surprised with the lack of  detailed knowledge though, among the doctors, especially seeing that I live in an endemic region.  So far no insurance issues, but they would not pay for the Igenex tests.