As you all know austin is off the IV meds and back to school. Well he missed 2 days of his abx zithro. He didn;t tell me but he told my mom that the other day he went to the nurses office because his muscles in his arms were hurting him.
Last night he spent the night at my moms. My mom called me this morning to tell me that he had a terrible nightmare. He was screaming and flip floping on the bed due to the nightmare.
His friday work folder came home from school today which has all work during the week and some from the previous week and I am seeing the grades that I seen last year this week he brought home 4 papers that were graded with a big fat F .
I am worried. Do you think that he is relapsing even though he is on the zithro or is the zithro not enough.
Posts: 78 | From Port Jervis, NY USA | Registered: Aug 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I really don't know what to say. I'm so sorry. Maybe he needs a different antibiotic. When are you going to the Doctor next?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Thank you I think that I will call Dr J because his next appt is dec. We were just there on Oct 5th and Dr J said Austin was progressing.
Then this happens I might wait a little bit and call when the office said to call for the blood test results. They sent out for testing again. I can call this week thats coming up for the results.
I am just worried I would hate to see him get really sick again.
Anymore input is greatly appreciated.
Posts: 78 | From Port Jervis, NY USA | Registered: Aug 2005
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posted
My daughter sometimes has a herx and seems worse for a couple of days. It could also be a flare. Dr J will tell you how to determine if it is either of those.
We did have to change her meds at one point because it seemed to stop working.
Good luck and I hope he feels better soon. I feel so bad when the kids aren't feeling well.
Posts: 441 | From USA | Registered: Jul 2004
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liz28
Unregistered
posted
Obviously, your child's well-being is too important to trust to the opinion of someone with no medical background.
It seems okay to say, however, that in terms of both my own limited experience and reading way too many Lymenet posts, zith has always been more in the "maintenance" camp than the "curative". It gained popularity at a time when there were few better alternatives, and tended to be included in antibiotic combinations that Lyme lifers took to stay reasonably functional. That doesn't mean it isn't a powerful drug, or that no one has gone into remission with its help.
But when I took it, the most it could do was hold back symptoms for 12 hours, and then they would immediately come back. It never made much of a dent in neuro symptoms.
There are many more choices nowadays. In fact, I'm suspicious of doctors who insist on using the old drugs, since those produce so many patients who get stuck at a certain level of recovery for years and years. You can read that any way you want.
The newer drugs do tend to have worse side effects if you are one of the people who can't tolerate them--and all of us have at least one or two drugs we just can't take. In my case, that means minocycline and levaquin. That's to be expected. But they have created a marked difference in Lymenet over the past year. A number of longtime Lyme sufferers have seen a sudden change by taking some combination of the newer drugs, or by treating co-infections or other secondary health issues.
So if you have some time, you may want to plough through the past year or so of Lymenet posts and check out some of these transformations. Since zith is a macrolide, you may want to focus on ketek, the latest and strongest version of that drug class. I found that it didn't do much on its own, but was a miracle drug when combined with a cephalosporin for Lyme, mepron and artemisinin for babesia, and rifampin (the greatest thing since sliced bread) for bartonella.
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posted
I would speak to your LLMD as soon as you are able. Could be a herx, but also possible that it's time to change antibiotics.
I'd also inquire about seizure activity due to lyme. I'm not trying to scare you, but my son had complex-partial seizures (for 6 years) and the majority of them were nocturnal. We did see some activity during the day, but it was very rare. He was typically running a fever or over stressed when he had a seizure during the day.
Your son's nightmares with flip-flopping on the bed sounds suspicious (and very familiar) to me.
Good luck, BB
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
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posted
Yes I am going to call Dr J office on monday. See what they say. The nightmare I didn't witness but thats how his twin brother described it to me. But I will also inquire about that with Dr J when I call. thanks again everybody.
Posts: 78 | From Port Jervis, NY USA | Registered: Aug 2005
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posted
Yes I will make sure he does not miss any more doses. My mom said she had a feeling that though he says he takes the pill that maybe when we walk away maybe he is spitting it out.
I asked him the other day if he really takes the med and he said yes. So I said well just in case you are acting like you are then spitting it out. That he could cause more problems by doing so.
the only thing that happend that was new was over the weekend he complained of his leg hurting and it complicated his walking for a little bit and then went away.
I will let you know what Dr J says later today. I have to work today so I will call around 3pm. I will post sometime later with the outcome. Thanks again.
Posts: 78 | From Port Jervis, NY USA | Registered: Aug 2005
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