The point was to thank all those who gave their time and hearts to help me take care of my son.
Last night after two weeks of being symptom free he woke with a bad croupy cough and pain in his knee (AGAIN!!!) (I should have known better than to tempt fate by saying that he was doing well.)
Maybe it's allergies, maybe it's a herx...
How can we tell that he's getting better?
(Boy, this is a different tone than my post yesterday, isn't it.)
I struggled with trying to present his treatment and symptoms via some sort of timeline. The image above has two parts. The top half is the 14 or so weeks prior to seeing Dr. J. As I hope you can see, he was on Amoxicillin for 6 weeks. The red, orange and pink color coded points highlight symptoms. The orange spot as he finished the Amox was a sore toe. Could that have been a herx reaction? 4 weeks later, he started having night-time knee pain in the original location. These incidents occurred at regular 10 or 11 day intervals. They were pretty painful. The ID doc said that these weren't Lyme symptoms. That's when I was convinced that he wasn't the person to care for my son.
The bottom half show the 15 week period since seeing Dr. J. You'll see that symptoms started around 5 or 6 weeks following the start of his new regimine. You'll also note that the night-time knee pain is less regular, though still persists. (It also seems to be less painful than it was before seeing Dr. J.) He's had other discomforts (ankle & back of opposite knee) which might be Lyme related.
My thoughts, which Dr. J agree with are that the three knee incidents prior to seeing him were probably the Lyme returning and that the incidents since he started taking the Omnicef and Zithromax under Dr. J's care are probably herx reactions.
All that said, I'm struggling with doubts... How do we know that these symptoms are herx and not the lyme? How do we know that we're killing it? How can we be sure that he doesn't have a particulary nasty strain that's surviving despite the antibiotics?
Every time one of these episodes happens my wife and I stay up all night and try to make sense of it.
I think I know what everyone will say... It's a long healing process... He's getting better... Stay strong...
It's not easy to do!
I just want this thing in his body dead!
Thanks for listening... Really...
John
[ 02. May 2007, 08:55 AM: Message edited by: John R ]
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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bettyg
Unregistered
posted
john, i hear you and totally understand. we ALL want these spirochette DEAD and out ofour bodies!
sorry he's sick again; it's an up/downhill battle, and we thank god for each HEALTHY day we get along lyme's highway of pot holes and wrong turns/drs!
you'll be in my thoughts/prayers. one thing lyme painfully teaches us ... we must have PATIENCE; it doesn't act fast. LYME HAS ITS OWN PACE FOR EVERYTHING! darn it all.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
That looks to be a really good timeline, except it's too small!! Can't read it! Nevertheless, I get the overall picture.
You said: How do we know that these symptoms are herx and not the lyme? How do we know that we're killing it? How can we be sure that he doesn't have a particulary nasty strain that's surviving despite the antibiotics?
Well, a worsening in his condition is indicative of a herx. New meds almost ALWAYS cause this. It's going to become less troubesome over time. Herxes will be smaller. It's trial and error to some extent to see what works.
How you'll know you're killing it is (a) worsening symptoms and (b) eventual ebbing of symptoms.
That's not to say that Bb can't find some hiding spots, to recrudesce later. But you'll be vigilant!
Keep up that timeline -- that's a great idea as during this long process it can get discouraging until you look at the BIG picture. Sometimes measured in months, not days.
Hang in there; you're doing the right thing!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hello John R - I just wanted to respond because last night I had to come out of my denial and realize that my 4-year-old Lyme-positive son is showing symptoms when I desperately do NOT want him to!!
He has been healthy for so long and now I'm seeing evidence that the dreaded disease is finally rearing its head. He's been infected since birth.
Last night he told me at bedtime that his legs get really tired when he runs or climbs the stairs. He's been rubbing his eyes a lot, too, and his sleep is very restless. He's also getting more aggressive. I'm crying as I write this.
God knows how I've suffered with this disease and now I fear for him so much!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
John-
I would trust Dr. J to know what is most likely in your son's case.
And it sounds like you came to the same conclusion independently, which is great, because that should tell you your instincts and reasoning are sound and can be trusted as well.
As far as staying up late trying to making sense of it all. Keep doing that and you'll be a zombie with no greater insight into this endlessly perplexing matter, you good man. Take care of your parent selves too.
I'd be much more worried for you if your son had not yet made any progress, or if he wasn't in Dr. J's hands.
I know it is a a thousand percent more difficult to feel hopeful rather than frantic when you see your child going through this. But I think you have good reason to feel hopeful, even with setbacks...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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