posted
As a first time poster, on Oct 20 2006 I told my story to this board. In January my thread was revived. Thanks (in no particular order) to bettyg, CaliforniaLyme, cbb, char, Michelle M, shazdancer, sometimesdilly, summerlove, TNJanet, trails, trueblue and valymemom for all the advice, information and comfort. The detailed story behind my son's infection, diagnosis and treatment can be found here: My 4 Year Old Tested Positive - Looking For Answers
Mine, I hope, is turning into a good story.
Yes, we made a misstep by first seeing an infectious disease doctor, but since then, we've been seeing Dr. J in CT and my son is doing well.
About 1 month after completing his six weeks of Amoxicillin, as prescribed by the ID Doc, my son had another incidence of knee pain. The ID Doc said that it wasn't the Lyme. (He was wrong.) After another two episodes of knee pain we finally got to see Dr. J.
Dr. J ran the gamut of tests, including testing for co-infections and performing the IGenix WB. Co-infections were negative, but obviously the WB was positive.
My son started on Omnicef and Zithromax in late January. He was symptom free for six weeks and then started showing symptoms involving the knee. Dr. J is attributing these to Herx reactions. Other than these isolated incidents, he's feeling great. He's very active and happy (which is a contrast to some of the really sick kids I've seen in Dr. J's waiting room -- really heartbreaking.)
So, he's been on the new course of ABX for 14 weeks now, with no negative side effects. He hasn't had a symptom in about 2 weeks. We saw Dr. J for a follow up last week.
We're going to continue to take the ABX until he's symptom free for 2 months.
Wish us luck.
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We're also doing all we can to prevent anyone from being infected by another tick bite. We've contracted with Connecticut Tick Control (www.nixticks) to spray our property 5 times each year and put out the Maxforce Tick Management System boxes. -- We've also made some landscaping changes, like removing randomly placed rocks and replacing them with a really solid retaining wall. (That brings me to a question about managing the chipmunk population... I'd love to make these critters leave my property for good, but there really seems like no sure-fire way to make that happen.)
We also spray the kids before they play in the yard.
Tomorrow starts the active nymph season in my neck of the woods. I'm praying for no ticks found in the nightly ``tick-checks'' this year.
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So, to summarize this rambling post: * Heartfelt thanks to so many who offered advice, information and comfort. * My boy is doing well, but will continue in treatment until Dr. J says so. * We're doing everything we can think of to minimize the risk of future infections.
Thanks again, John
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Good work, John*)!)*! Very glad to hear it!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
john, THANKS for updating us on your precious son and how he's doing! glad you found dr. j and he's worked his wonders with your son!
glad you found a wealth of info from all of us, and you've done home precautions on changing your environment too.
john, in GENERAL IS SUCCESS STORIES; may i suggest you copy your reply there as well! parents of young ones like yourself, need to be able to read and feel encouragement that they too can get their CHILD WELL and let them live a quality life! my best to all of you.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Wonderful! and thanks for the update. Makes it worth answering posts to know that once in awhile, it makes a difference.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
John-
Thank you so much letting us know how your son is doing! What wonderful news! How incredibly relieved you and your whole family must be. Your son is fortunate to have you as his advocate.
Yes, all of us here screamed in unison- NO NO, NOT THE I.D. DOCTOR!!
It takes living in Lyme-land for a little while to really understand that the normal order of things in the medical world just doesn't apply to Lyme.
So, you took him to a top tier doc who should have been your best resource. But you also came here and listened- clearly- and so had DR. J up your sleeve from the beginning too, as I recall. Really- hats off for taking such good care of your son.
Please check your PM's in the next day or so- I'll be sending you a PM about helping Dr. J.
all the best- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
John -- I was so touched by your story! And am so relieved to now hear the update. Your son's in the best of hands. Dr. J is wonderful - a real institution of caring for children and knowing of which he speaks!
To anyone who would think you are going too far, (i.e., various mainstream and ID docs), just remember that your son's present and future health are at stake. Those children you saw in Dr. J's office (bless their poor hearts) can be and often are the result of ignorant doctors.
When doctors "start up" with me about lyme being easily treated with a short course of abx, I take a perverse enjoyment in asking them how they intend to address the cystic form.
This is most often met with blank stares, fumbling, or outright disappearance from the room. What this means is the doctor last read something on lyme disease approximately a decade ago, and has no freaking idea what you're even talking about. But will do anything rather than admit it.
Keep arming yourself with knowledge. My best to you and your family!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I'm impressed by how much you have done. Its comforting to hear about a parent such as yourself. It can be frustrating, you may find this out for yourself, talking to so many that are ignorant and have no interest in helping their own children.
Your son is only four so you can't really get a good picture yet in reference to cognitive symptoms and school. Watch for it over the years. I personally would never have guessed my son was infected until it was brought to my attention in third grade that he was having focusing issues. Even then I didn't know. Third grade appears to be the grade where the schools start paying attention. Most likely because its when they are required to report assessments and meet certain standards.
You may want to pay attention to how your childs short term memory develops as well as executive functioning. Can you tell him to complete three or four things with his remembering all of them? At four years old its kind of hard to tell yet. Don't stress about it. You sound like a wonderful parent so I'm sure you will stay informed. Good luck and thank you for caring so much.
Posts: 547 | From Maryland | Registered: Mar 2005
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