Re: plateaus in improvement

[Guest guest]

Hi there,

I just wanted to let you know that I know what you mean about the plateau also

-- I feel like is there right now, although just a couple of months ago he

was doing extremely well. I keep debating on whether I should just continue to

wait it out and or check with Dr. . I think I'll give it a bit more time

before I call him on it. It's like you said -- he's so much better than the end

of last summer and early fall, but he seems kind of stuck with something going

on each day. It's such a confusing disease.

Also, I wanted to ask if any of you have regular bloodwork done on your kids to

check for any negative side effects from the long-term antibiotics. I've heard

conflicting info on this. Dr. J doesn't seem to feel there is a concern but

this is the one area where I've felt being extra cautious can't hurt so I've had

's blood checked a few times because others have indicated it's a good

idea. But I've even heard that it's good to get it checked monthly when on

long-term meds and just curious what all of you have been doing.

Thanks,

Patty in MD

[ ] plateaus in improvement

Hi Again! (I think I've got this posting thing now...LOL)

I'm just wondering if any of you have experienced " plateaus " in

improvements. Jake is certainly better compared to last fall &

winter...however, it seems like the " getting better " part has

stopped. He does seem to be having more " melt downs " of late.

It is almost like he is " stuck " ...no further improvements in the past

few weeks, though symptoms remain.

Have any of you experienced this? We are due to go back to see Dr. J

at the end of this month (*if* we can come up with the funds...not

looking too promising).

To comment on recent discussions, I do believe in the aggressive

treatments and it scares me to start switching antibiotics around. I

know too many chronic Lyme patients who have started and stopped so

many time with so many different drugs. So, for us, I have to trust

Dr. J, on this. He is all we've got with the most knowledge &

experience!

<big sigh>

(TN)

The book, Confronting Lyme Disease: What Patient Stories Teach Us is now

available through Amazon and Booksurge Bookstores. Please visit the

official website at http://www.confrontinglyme.com for more information.

[Guest guest]

Patty, Our doctor suggests checking liver enzymes after a few months on

tetracycline.

Sue

[Guest guest]

Dear Patty,

I could have written the same message about . She too has not been well. We

saw Dr. J the same day you did in March, and it has been downhill a bit since.

No improvement at least. We debated about doing a phone consult to see if he

wanted to " tweek " her meds, but then realized we needed to change her appt that

was scheduled in June due to a final exam. The only time they had open was this

Sat! So we are leaving tomorrow. I am glad because I think he may have some

ideas that may get her back on the upswing. So many of the kids I have talked to

are not doing well. I know this is a rough time of year usually for

anyways, so trying to realize that as well...

Meg is on IV and when kids are doing IV they get bloodwork every week or two.

Otherwise we were getting it every time we saw Dr. J, or almost every time. I

think there are certain meds that you need to be more careful with to watch

them, and get bloodwork more frequently. I know different docs do it

differently.

[Guest guest]

,

Thanks for the info and good luck with your appt on Saturday. You are right

that it depends on the meds they're taking, and 's switched a bit but for

the majority of the time (including right now) he's been on Zythromax & Amox.

's regular pediatrician seemed concerned that Zyth long-term could do

damage but Dr. J didn't seem to feel the same way.

Thanks again and keep in touch (I'd love to hear if Dr. J suggests things that

gets back on track),

Patty

Re: [ ] plateaus in improvement

Dear Patty,

I could have written the same message about . She too has not been well.

We saw Dr. J the same day you did in March, and it has been downhill a bit

since. No improvement at least. We debated about doing a phone consult to see if

he wanted to " tweek " her meds, but then realized we needed to change her appt

that was scheduled in June due to a final exam. The only time they had open was

this Sat! So we are leaving tomorrow. I am glad because I think he may have some

ideas that may get her back on the upswing. So many of the kids I have talked to

are not doing well. I know this is a rough time of year usually for

anyways, so trying to realize that as well...

Meg is on IV and when kids are doing IV they get bloodwork every week or two.

Otherwise we were getting it every time we saw Dr. J, or almost every time. I

think there are certain meds that you need to be more careful with to watch

them, and get bloodwork more frequently. I know different docs do it

differently.