Lyme disease stories? Diagnosis and treatment
Lyme disease stories? Diagnosis and treatment
Auggie27
Broadway Legend Joined: 10/13/03
#1Lyme disease stories? Diagnosis and treatment
Posted: 7/13/09 at 10:00pm
I live in the 2nd most infected state -- NJ -- and my 18 year old son has been infected and under- and/or attenunated in its diagnosis, due to stalling by his well meaning but to my observation too timid doctor. Despite the classic symptoms, including the target-like rash behind the knee, with the evolving dusky red eclipse shape/white inner circle, there seems to be a reluctance to prescribe the necessary antibiotics without the lab test, which is late returning. And it's frustrating because it can come back negative in the early days due to the slowly appearing antibodies.
I've done homework, and realize there was an excessive amount of misdiagnosis in the last decade, but this is an insidious condition that needs early treatment.
Anybody have stories to report, positive or negative? My son was given doxycycline (a mega-potent tetracycline family drug), but with strong reservations on the part of his doctor. It's not been fun. And considering the possible subsequent symptoms -- including facial paralysis (Bell's palsey) -- a sense of urgency is at least understandable, no?
Stories?
#2re: Lyme disease stories? Diagnosis and treatment
Posted: 7/13/09 at 10:06pmI don't have any personal stories. I used to call on a doctor whose wife was suffering from it and that's as close as I get. Very sorry to hear that your son is going through this. I'm sending good vibes that things will work out okay!
#2re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 6:07am
Auggie27 - Lyme disease has an early and a later stage. The rash appears in the early stage which can last for weeks. This is the stage where the rash is seen and the appropriate treatment is Doxycycline. It's when the early stage is left untreated that the more serious problems occur. As long as your son completed the course of Doxy, he should be fine.
Updated On: 7/14/09 at 06:07 AM
SueleenGay
Broadway Legend Joined: 6/9/03
#3re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 6:15amAuggie, that is awful! I hope he recovers soon and has no lasting affects. Tell him to stay out of those bushes!
#4re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 8:10am
I've gotten it before. It was very odd for me. First, I just noticed some sort of rash on the back of one of my calves, which was red with some black pimple like things. It didn't itch. It just hurt. The doctor didn't know what it was. He was sort of thinking it was a spider bite. But then, the test came back positive for lyme disease. I took the antibiotics and the rash disappeared. However, I soon noticed the bulls eye mark on my stomach. So, I went back to the doctor for more antibiotics.
I know some people do end up with lasting effects from it, but I didn't, despite the first thing happening.
#5re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 8:10amMy brother was bit right before his high school graduation. They didn't get the tick for a while because he never knew it was there. They removed it and he just kinda played the wait and see game. A few days later he started to feel really sick which was the ammo we needed to get him to the dr. They did tests and confirmed that it was in fact lyme disease. He was still sick for a few more weeks but the meds finally did it's thing and he started feeling better. He still has to go for yearly tests but so far so good and there have been no reoccuring symptoms. Best thoughts for your son.
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Auggie27
Broadway Legend Joined: 10/13/03
#6re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 8:25am
Many thanks to all. Last night he woke up with the pain in his left hip quite intense -- again, typical of lyme, arthritic in nature, rather than like a sore muscle. If you've never had a joint pain, it's hard to understand it (and teenagers don't generally know from that kind of ache -- dull but intense). Today it's 50% better. He's had his second docycline. The target on his leg remains, but is more vivid after he showers.
Again, thanks to all. There are two schools of thought on the length of treatment -- 10 days vs. 21 days. I know he's taking the max docycline -- two a day. And tolerating it well. We're still waiting on the lab result.
WOSQ
Broadway Legend Joined: 7/18/03
#7re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 10:02am
My case of Lyme was diagnosed early and I was given the 21 day doxy protocol. Twice a day. That got rid of it. We also figured that the case was maybe only two months old.
FYI - I did not get the target rash. I had other symptoms like sexual dysfunction which is not good for the ego, thank you very much.
I also now routinely have a Lyme test at the end of every summer which I totally recommend for everyone. If your doctor balks, insist. It is your body.
My cousin's wife has chronic Lyme and has had it off and on for 25+ years because it wasn't diagnosed in 1982 when she first developed symptoms. Lyme is endemic in southeastern Pennsylvania where they live.
Have the Lyme test done annually with your other bloodwork.
Auggie27
Broadway Legend Joined: 10/13/03
#8re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 11:03am
Today the doctor said the lab results won't be in until tomorrow. That generall means there's been an initial positive, and a second test is run.
I continue to chronical this, because the nurse said this has gone from an overdiagnosed disease to an undertreated one. As several of you have noted, it becomes chronic if not addressed in the initial months. Still cannot tell how old my son's case is, but the doctor confirmed that the bulls eye/target doesn't always appear at the tick bite site. My son swears it's around an ugly mosquito bite; he recalls the moment. Ultimately, the bulls eye's presence anywhere is all that matters -- one need not see the tick there.
Apparently, the antibody can take 8 weeks to show up, and that's why those with the bulls eyes must go to the doctor while it's visible to start treatment. A friend of my son -- another teen -- waited and already has chornic knee pain.
This is not a condition to ignore, and I fear it's off the radar with swine flu. Swine flu comes and go; untreated, Lyme is forever. That's not hysteria, but a reminder.
Thank you, WOSQ. Your advice is absolutely on the money. Why not ask for it, especially if you live in NJ, PA, NY. In the spring, these ticks are everywhere.
#9re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 3:38pmA Facebook friend of mine just updated her status recommending a documentary playing here in San Diego about Lyme disease called "Under Our Skin". I don't know anything about it, and hadn't heard about it prior. But it is apparently in limited theatres now - maybe playing somewhere near you? According to her update, it's a very informative docu. Best wishes.
Unknown User
Joined: 12/31/69
#10re: Lyme disease stories? Diagnosis and treatment
Posted: 7/14/09 at 8:30pmI live in Ct, a few towns over from Lyme. I've been diagnosed around three times, and have had symptoms many other times. The first time I had it, I was maybe 14. My knees hurt so badly that I couldn't stand, but I also couldn't sit or lie down. It was pretty miserable. The antibiotics I was given made me sick, but I stuck with them and got better. Its a tough disease, but stick with treatment, and your son should be fine.
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