q about lyme disease - what do I ask doc for?

[EmilyGF]

We've been doing a ton of hiking and exploring this summer and ds8 now has a bulls-eye-ish (but not perfect) rash around a crusty bump in the middle. We've been tick checking fairly well, but I know ticks can be pretty darn small.

I took pictures and I'm planning to try to get an urgent care appointment for Monday.

We are not in a location that is prime for Lyme disease, so I'd like to know what to insist upon. Knowing people who have suffered from Lyme for many years, I know that being extra careful at the beginning is the way to go.

What is do I ask for?

Thanks, Emily

[Pen]

If it is Lyme: Full, sufficient and immediate antibiotic treatment. Starting Today. 

Take him to a walk in place today. Not “try” to get appointment Monday. 

(Crusty bump not especially typical afaik. It may not be Lyme. But I would still go in today.)

Edited August 15, 2020 by Pen

[EmilyGF]

OK, got the appointment at the doc's today.

The one plus side of COVID is that everyone seems to avoid the doctor's like the plague and getting urgent care appointments at the doctor's is super easy. It used to be that you'd call, wait on the line for 30+ minutes, and maybe get a same day appointment. Now they ask, "When would you like to come in this morning?"

What constitutes full antibiotic treatment? 4 weeks? 6 weeks?

Emily

[Pen]

Someone else who is more up on that needs to answer the what and how long.  If he gets started and needs to extend that’s possible to do.  But if it’s needed it shouldn’t be delayed in starting. 

[Catwoman]

Ask for a minimum of 30 days on doxycycline, and a Western Blot blood test for Lyme at the end of the 30 days.

[Catwoman]

Just adding — if your ds doesn’t have any symptoms, start the doxycycline ASAP and he will probably never get any symptoms. But don’t wait! I know some doctors hesitate to prescribe it for younger kids, but weaker medications often don’t work effectively. 

You may be able to get a video appointment or even a prescription over the phone if you describe the bullseye rash or email a picture of it to the doctor.

But insist on 30 days. Some doctors only want to prescribe 2 weeks, and that is NOT enough! 

PS. I have had Lyme three times, so I have very strong feelings about this!!! But if he has no symptoms now, you can totally prevent them by acting quickly, which you are. Good for you!!!

Edited August 15, 2020 by Catwoman
Thought it was you and not your son — I need to learn to READ!

[J-rap]

That's great that you got in today!  Let us know.  

If you're in an area that doesn't generally have Lyme, you may have to push to get the right test.  

My mother had it once, and her doctor was not very familiar with it.  (This was YEARS ago.)  He tested her, but at the time, we weren't very familiar with Lyme either so didn't request any test in particular.  He told her nothing showed up as unusual on her blood tests.

When her rash got worse instead of better, she went to a different, well-known hospital, and tested positive for Lyme.

[Catwoman]

I just checked and it looks like 8 years old is pretty much the minimum age for doxycycline, so your ds should be ok to take it. Otherwise, the doctor will probably prescribe amoxicillin, which did not work for me at all when I took it. 

I think the main reason why doxycycline isn’t used for little kids is the risk of dental staining, but as I understand it, the risk is now considered to be very minimal. You could look it up and get more info before your appointment, so you would know what questions to ask.

[Catwoman]

7 minutes ago, J-rap said:

That's great that you got in today!  Let us know.  

If you're in an area that doesn't generally have Lyme, you may have to push to get the right test.  

My mother had it once, and her doctor was not very familiar with it.  (This was YEARS ago.)  He tested her, but at the time, we weren't very familiar with Lyme either so didn't request any test in particular.  He told her nothing showed up as unusual on her blood tests.

When her rash got worse instead of better, she went to a different, well-known hospital, and tested positive for Lyme.

 

 It generally does not pay to get the blood test too quickly, because it takes a while for Lyme disease to show up in the blood. By the time it shows up in a blood test, it’s too late to prevent symptoms and it can often mean that recovery will take a lot longer. If the bull’s-eye rash is already present, the assumption should be made that it’s Lyme disease and it should be treated accordingly, with a blood test after several weeks of treatment to ensure that there is no active disease.

Edited August 15, 2020 by Catwoman
More typos!

[Corraleno]

They will probably do an ELISA test first, which can be done at any time, even very early in the infection. It is very sensitive but also returns a lot of false positives, so if the ELISA is positive they will do a Western Blot. There are 2 Western Blots, and it's VERY important to know which one should be ordered: IgM is for current acute cases and only detects antibodies in the early stages of infection. IgG will pick up antibodies for chronic Lyme that has been in the body for a while.

Make sure they do the right one! My son had a positive ELISA and the doctor ordered the IgM, even though I told him that had been more than a year since he would have been infected, and the IgM came back negative. I had to go to another doctor and persuade him to order the IgG, which came back overwhelmingly positive, and DS wound up on doxy for 18 months.

[J-rap]

12 minutes ago, OKBud said:

My son got a tick embedded in his armit when we lived in the Northeast, so we had to go to the hospital to get it taken out. I insisted on antibiotics, though they were pretty blase about it (weird!) bc another of my kids has Lymes. They wouldn't give him Doxy because of his age, so he got Amox. It did turn his teeth yellow, but now like 4 years later, it's barely noticeable. They told me it wouldn't fade lol, so I don't know what's up with that, but of course we are pleased 🙂 

My dd was on antibiotics for about a year when she was young, and her teeth turned yellowish too.  I don't notice it anymore....  I guess it's quite common though.

[EmilyGF]

We got back from the doctor. DS is on 21 days of doxy and has a referral to an infectious disease doctor. We go a regional research hospital, so the doctors are pretty well-informed.

Interestingly, the doctor wasn't interested in testing him for anything. She said that he had a rash that was consistent with (but not 100% - it was like a bulls-eye but not exactly one, which I agree with) Lyme and an exposure history given how much we've been hiking. She called Lyme testing a crap shot and said that we could see an expert infectious disease doctor if we were interested in asking more about testing following the antibiotics.

Emily

[Pen]

14 minutes ago, EmilyGF said:

We got back from the doctor. DS is on 21 days of doxy and has a referral to an infectious disease doctor. We go a regional research hospital, so the doctors are pretty well-informed.

Interestingly, the doctor wasn't interested in testing him for anything. She said that he had a rash that was consistent with (but not 100% - it was like a bulls-eye but not exactly one, which I agree with) Lyme and an exposure history given how much we've been hiking. She called Lyme testing a crap shot and said that we could see an expert infectious disease doctor if we were interested in asking more about testing following the antibiotics.

Emily

 

Good!!!

Getting him on abx ASAP was what was needed.  Ideally now whether it is Lyme or not, he won’t have long term issues. 

So if 30 days doxy is preferred, you can now use the next couple of weeks to get the additional 8 days of doxy prescribed.

and testing or not can be done weeks from now