Kid with bulls-eye rash. What meds to ask for?

[duckabell]

I saw a small bulls-eye rash on my 9-year-old this morning and we have a dr's appointment for this afternoon. I took a couple of pictures in case it fades. For those with Lyme experience, what antibiotics should I request and for how long? Thanks!

[StephanieZ]

DOXYCYCLINE. 

 

DEMAND IT. He must start TODAY. Routine (adult) dosage is 100mg twice a day for 2-4 weeks. That's what I did (4 weeks), but it was too late, and now I'm on much higher dosage (double) of doxy plus a second antibiotic. Chances are I'll have to go on IV antibiotics soon.

 

And DEMAND they send out Lyme tests. They aren't always accurate, but you want the Lyme diagnosed officially via a CDC-positive test if at all possible to smooth (somewhat) access to insurance for related problems if they occur (which they can, months to years later).

 

 

[Carol in Cal.]

Also watch out for depression.  

[Catwoman]

DOXYCYCLINE.

 

DEMAND IT. He must start TODAY. Routine (adult) dosage is 100mg twice a day for 2-4 weeks. That's what I did (4 weeks), but it was too late, and now I'm on much higher dosage (double) of doxy plus a second antibiotic. Chances are I'll have to go on IV antibiotics soon.

 

And DEMAND they send out Lyme tests. They aren't always accurate, but you want the Lyme diagnosed officially via a CDC-positive test if at all possible to smooth (somewhat) access to insurance for related problems if they occur (which they can, months to years later).

I would demand a 4 week course of doxycycline, but I wouldn't run bloodwork for Lyme yet because this is a new infection and probably won't show up as being positive yet.

[Guest]

With the rash they'll diagnose on sight. Take a picture of it in case it fades.

 

Doxy is the ticket.

[2ndGenHomeschooler]

Around here they'd give antibiotics without doing a test. My DD had the classic bullseye rash and they didn't bother with a blood test, the Dr. just wrote me a prescription for 3 weeks of doxy.

[MEmama]

Yeah, here a bullseye means automatic treatment with doxy, no testing needed (although they automatically test for several additional infections now; Lyme isn't the only concern).

 

My understanding is that 3 weeks of doxy isn't long enough to kill the entire lifecycle. I would (and have) insist on 6 weeks to be thorough.

[Farrar]

Another vote that the rash is a good thing - any urgent care or ER or doc worth anything will diagnose on sight and proscribe doxy right away. There is zero need for testing. When ds had it, they told us that nothing else causes that particular rash.

 

 

[Butter]

Yes, Doxy.  When my now 11yo had a bulls-eye rash the doctor diagnosed Lyme immediately and didn't do a blood test because it would simply confirm what he already knew.

[StephanieZ]

I would demand a 4 week course of doxycycline, but I wouldn't run bloodwork for Lyme yet because this is a new infection and probably won't show up as being positive yet.

 

If there's a bulls eye rash, you may well get a positive test. Once you start ABX, it's unlikely you'll ever get a CDC-positive test. 

 

I 100% agree that starting ABX promptly is critical, but if you *can* get a positive test, it's well worth your while. 

[StephanieZ]

Yes, Doxy.  When my now 11yo had a bulls-eye rash the doctor diagnosed Lyme immediately and didn't do a blood test because it would simply confirm what he already knew.

 

Hopefully your kid is 100% good to go now . . . In general, kids respond well to treatment.

 

However, if one misses the chance for a CDC-positive test, you're closing the door on getting access to many doctors and/or insurance coverage if you have problems later. 

 

I'm living with Lyme, and getting adequate access to care WITH a CDC-positive test is hard enough . . . having talked to many trying to get care w/o ever getting that CDC-positive test  . . . I am VERY VERY VERY glad to have it in my documentation. 

[Butter]

Hopefully your kid is 100% good to go now . . . In general, kids respond well to treatment.

 

However, if one misses the chance for a CDC-positive test, you're closing the door on getting access to many doctors and/or insurance coverage if you have problems later. 

 

I'm living with Lyme, and getting adequate access to care WITH a CDC-positive test is hard enough . . . having talked to many trying to get care w/o ever getting that CDC-positive test  . . . I am VERY VERY VERY glad to have it in my documentation. 

 

It's been more than half his life :)  He's got no lasting issues.  I had Lyme Disease 15 years ago and also have no lasting issues.

[RegGuheert]

Because of the severe sunlight sensitivity caused by doxycycline, I would choose amoxicillin unless the child is allergic to penicillin.  As others have said, get four weeks worth if at all possible.

[duckabell]

Thanks everyone! I was able to get 4 weeks of doxy prescribed. Now the pain is filling the prescription locally, but hopefully I should have it by tomorrow. I do like my doctor. Even though she hadn't heard of doing doxy for four weeks, she agreed to it.

 

I didn't have any tests ordered. Technically this son has had antibiotics for a tick bit a few years ago. And with the rash just showing up I figured there might not be antibodies anyways. Plus, if I was going to push for one thing, it was the meds more than the testing. Thanks again for all the feedback!

[momto3innc]

Just be sure to take the sun sensitivity seriously. Like really, really seriously. Even with spf 70 plus lots of clothes, I got sun poisoning from a burn on my KNUCKLES while on doxy (apparently the only area I didn't cover). Lots of indoor time coming up!

I also could not take it on an empty stomach. Glad you were able to get it!

[solascriptura]

My son had a bulls eye rash and they didn't even ask us to to come in for an appointment. We live in the center of the epidemic so it's automatically assumed.

[StephanieZ]

It's been more than half his life :)  He's got no lasting issues.  I had Lyme Disease 15 years ago and also have no lasting issues.

 

Oh, of course, I understood that for your child, this wasn't a concern anymore. I was posting for the benefit of the OP who still has an opportunity to get a CDC-positive test. 

 

Being deep in the middle of a severe case of Lyme, I have discovered that I am *incredibly* lucky to have a CDC-posiitve test in my medical record. 

 

There is a small but not at all insignificant chance of anyone who has Lyme (as indicated by the bulls eye bite or other symptoms and/or a CDC positive test . . . developing very serious health issues months or even years after the initial bite. (The better care you get and the sooner you get it, the lower those chances of morbidity or, even, mortality.) However, if you don't get a CDC positive test in your medical record from that original infection, it will be very, very hard to access needed care, etc. The people struggling with late Lyme disease who never got a CDC-positive are nearly universally dismissed as mentally ill, depressed, imagining their ailments, etc. It's really, really, really messed up.

 

I'm 100% confident this is the true belief of the vast majority of medical practitioners today. Sad, but true. Google up "chronic lyme mentally ill" or similar and you'll see it for yourself soon enough. Talk to some infectious disease docs and/or family practitioners . . . about "chronic lyme", and if they are being honest with you, you'll see I'm utterly, sadly right. It's really messed up.

 

The chances might be 1% or 5% or 20% that your acute case will result in long term disability, or whatever number you want to assign to that risk, which is *very* controversial, but I'm just saying that from my very personal experience, if I thought I had an acute Lyme case, I would absolutely do whatever I had to do to get tested (and retested if needed) during that acute period so I had that positive in my medical record -- as an insurance policy towards getting better medical and financial care in the future if anything awful happens. Feel free to ignore this advice at your own physical and financial peril. I just wouldn't want to take that risk. I'm personally looking at maybe a 5% chance of long term disability from my Lyme, given my current status, and a certain chance that my total medical bills from TRADITIONAL providers will be at least 10k in the first year, best case, and add at least another 1-3k in uncovered care from Lyme docs who do NOT accept insurance. That's if I am one of the lucky 95%. If I'm one of the unlucky, then I could easily be looking at years to decades of medical care and significant disability, on top of 10s of thousands in non covered medical care trying to get out of that spiral. I'm grateful I don't work, because if I did, I'd have lost my job weeks ago, and my family would be looking at a minimum of 6 months with no ability to work, and that's assuming I'm in the lucky 95%. So, yah, to me, it's worth the trouble and expense of getting a CDC positive test. Because, at least in my case, that test means doctors and specialists WILL see me eventually and I WILL access the care I need, and if I am disabled, I WILL qualify for coverage of my disabilities through whatever insurance/etc we have . . . If I didn't have that CDC positive test, I'd be totally, utterly f*cked. 

 

Essentially, by getting a DX in the record, I've armed myself against being dismissed as crazy. I hope. 

[MEmama]

Oh, of course, I understood that for your child, this wasn't a concern anymore. I was posting for the benefit of the OP who still has an opportunity to get a CDC-positive test.

 

Being deep in the middle of a severe case of Lyme, I have discovered that I am *incredibly* lucky to have a CDC-posiitve test in my medical record.

 

There is a small but not at all insignificant chance of anyone who has Lyme (as indicated by the bulls eye bite or other symptoms and/or a CDC positive test . . . developing very serious health issues months or even years after the initial bite. (The better care you get and the sooner you get it, the lower those chances of morbidity or, even, mortality.) However, if you don't get a CDC positive test in your medical record from that original infection, it will be very, very hard to access needed care, etc. The people struggling with late Lyme disease who never got a CDC-positive are nearly universally dismissed as mentally ill, depressed, imagining their ailments, etc. It's really, really, really messed up.

 

I'm 100% confident this is the true belief of the vast majority of medical practitioners today. Sad, but true. Google up "chronic lyme mentally ill" or similar and you'll see it for yourself soon enough. Talk to some infectious disease docs and/or family practitioners . . . about "chronic lyme", and if they are being honest with you, you'll see I'm utterly, sadly right. It's really messed up.

 

The chances might be 1% or 5% or 20% that your acute case will result in long term disability, or whatever number you want to assign to that risk, which is *very* controversial, but I'm just saying that from my very personal experience, if I thought I had an acute Lyme case, I would absolutely do whatever I had to do to get tested (and retested if needed) during that acute period so I had that positive in my medical record -- as an insurance policy towards getting better medical and financial care in the future if anything awful happens. Feel free to ignore this advice at your own physical and financial peril. I just wouldn't want to take that risk. I'm personally looking at maybe a 5% chance of long term disability from my Lyme, given my current status, and a certain chance that my total medical bills from TRADITIONAL providers will be at least 10k in the first year, best case, and add at least another 1-3k in uncovered care from Lyme docs who do NOT accept insurance. That's if I am one of the lucky 95%. If I'm one of the unlucky, then I could easily be looking at years to decades of medical care and significant disability, on top of 10s of thousands in non covered medical care trying to get out of that spiral. I'm grateful I don't work, because if I did, I'd have lost my job weeks ago, and my family would be looking at a minimum of 6 months with no ability to work, and that's assuming I'm in the lucky 95%. So, yah, to me, it's worth the trouble and expense of getting a CDC positive test. Because, at least in my case, that test means doctors and specialists WILL see me eventually and I WILL access the care I need, and if I am disabled, I WILL qualify for coverage of my disabilities through whatever insurance/etc we have . . . If I didn't have that CDC positive test, I'd be totally, utterly f*cked.

 

Essentially, by getting a DX in the record, I've armed myself against being dismissed as crazy. I hope.

:grouphug:

 

Thank you for pointing this out. I'm sorry you are going through this. :(

[Katy]

In the realm of totally experimental stuff, you might see if you can get some stevia extract (the liquid drops containing a bit of alcohol) at a grocery or health food store near you, and add 2 drops to his drinks 3 times a day for the next 4 weeks too.  There was a recent study released that stevia kills the biofilm that protects the bacteria from antibiotics, and that when combined with doxy at 4 weeks, no lyme bacteria survived.  I can't remember if I posted that here or not, it came out on science daily maybe a month ago.  Anyway, that should be a cheap and low side effect booster to the doxy.

[Guest]

If there's a bulls eye rash, you may well get a positive test. Once you start ABX, it's unlikely you'll ever get a CDC-positive test. 

 

I 100% agree that starting ABX promptly is critical, but if you *can* get a positive test, it's well worth your while. 

 

We just got back from DS's follow-up from his hospital stay for lyme arthritis and the pediatric infectious diseases doctor said that there was no point in doing a new test, because he HAS lyme, so they will all come back positive. The test doesn't detect the presence of the germ, but rather the presence an immune reaction to the germ. So, since he has the lyme, even though he's been on Doxy for bocu weeks, he'd still test positive.

[StephanieZ]

We just got back from DS's follow-up from his hospital stay for lyme arthritis and the pediatric infectious diseases doctor said that there was no point in doing a new test, because he HAS lyme, so they will all come back positive. The test doesn't detect the presence of the germ, but rather the presence an immune reaction to the germ. So, since he has the lyme, even though he's been on Doxy for bocu weeks, he'd still test positive.

 

 

Assuming that the vast majority of kids with a bulls eye rash who go on doxy . . . are fine for many months after . . . by the time the occasional kid gets sick with Lyme arthritis or similar months to years later . . . I believe that they are *not* likely to test positive at that late date. 

 

Once you've got one and any one CDC-positive test in the medical record, I agree that it's meaningless to re-test. 

 

I'm so sorry your son has been sick. From what I've heard, kids tend to respond well to ABX and have a good prognosis. I hope your son is among those who respond well and is A-OK very soon!

[StephanieZ]

In the realm of totally experimental stuff, you might see if you can get some stevia extract (the liquid drops containing a bit of alcohol) at a grocery or health food store near you, and add 2 drops to his drinks 3 times a day for the next 4 weeks too.  There was a recent study released that stevia kills the biofilm that protects the bacteria from antibiotics, and that when combined with doxy at 4 weeks, no lyme bacteria survived.  I can't remember if I posted that here or not, it came out on science daily maybe a month ago.  Anyway, that should be a cheap and low side effect booster to the doxy.

 

Thanks for the mention. I'm familiar with the new research on stevia. I haven't tried it myself yet, but have been on a highly recommended "biofilm buster" since I started the doxy, so I think I have the biofilm issues somewhat in hand. I actually have pure, leaf stevia in the pantry . . . I will probably try it at some point . . . 

 

Thus far, I'm taking about 17 supplements/tinctures/etc in addition to the medications . . . Most of them are aimed at un-doing the damage done by the antibiotics  . . . (i.e., detox things, probiotics, pre-biotics,etc, etc.) Treating severe Lyme is crazy difficult. 

 

At the moment, I'm just trying to survive the side-effects of the ABX I'm on right now, and holding out hope that this latest round of ABX will be my winning combo . . . and that the "detox" period coming at the end of the month will be a time of healing and saying goodbye to Lyme . . . If not, I'll just keep trying new things . . . 

 

Thanks all for your sympathy. I appreciate it. This is a bitch of a disease.

[Butter]

My dad is being treated currently for Lyme Disease for the second time.  The doctor said there was no reason to test him for Lyme this time around because once you have a positive result, you will always have a positive result.