Here is our story. We live in NJ. Last summer our babysitter took our three year old to a local park. Noticed a small tick on her and removed it when she got home less than an hour later. Called the doctor and were told to monitor it. There was no rash, no redness at the site, no flu like symptoms or fever etc for the next month. Tick came off easily and had been on for a very short time. Thought everything was okay.
Fast forward to last few months. Three year old has been periodically complaining of some pain behind her right knee. Doesn't seem to really bother her and she seems to complain when she wants attention or when she wants us to carry her. No other symptoms. The usual coughs and colds that kids get from daycare.
Yesterday we noticed a rash on the back of her neck. Does look like a bit of a bullseye rash. Redder on the outside and clearer in the center. Not super noticeable but definitely a rash there.
Took her to doc today and they did bloodwork and sent to off to do the western blot test.
So my questions are -
Is it strange that she would have no other symptoms if it was Lyme??
Assuming this came from the tick last summer is it strange that there was no rash or symptoms then but there is a rash now?
Doctor mentioned that since she has had a lot of antibiotics over the past two years for ear infections that may have helped if it was Lyme. Is that true?
Is treatment / outlook for young child different than for an adult? Anything else we should be doing?
Obviously pretty freaked out and a lot of horror stories out there on the web so trying to be proactive.
Thanks!!
Posts: 9 | From New Jersey | Registered: Apr 2016
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bcb1200
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First:
Take a photo of the rash now. Keep it. Most lyme rashes aren't textbook bullseyes.
I wouldn't expect the western blot to be very helpful.
It isn't necessarily strange that she hasn't had other symptoms. But keep your eye out for anything unusual. More aches, pains, behavior problems, anxieties. Even if they develop a year form now etc.
As for abx, yes some abx will help and certainly are beneficial if she has taken them in the past year or so for ear infections, etc. But typically lyme needs more abx for a longer period.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Thanks! So regardless of the western blot result should we get her on another antibiotic for a longer course?? If so what abx would be used for a young child?? And should we seek out a llmd as soon as possible regardless of result or is this a wait and see if test is neg,
Sorry for all the questions Hard to figure out what we should be doing!
Posts: 9 | From New Jersey | Registered: Apr 2016
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Catgirl
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It's possible she was bit again. Ticks love the back of the neck. Lyme symptoms can pop up anytime. It grows slowly, so it is not uncommon for her to only have some knee pain.
I would seek out an LLMD as soon as you can. An LLMD will know what to put her on (adults use stronger meds). It's good to treat while you see some sort of bullseye, also the bullseye does not have to be perfect at all.
Tell LLMD's office on the phone you want to be put on their cancellation list so you can get in quicker. Go to SEEKING A DR and someone will PM you some names.
You could also try the walk in clinic at the hospital (for infectious disease). No guarantees though, but maybe she can get something. Still keep LLMD apt.
Yes, regardless of western blot she needs to be on an abx or the rash wouldn't be there. The western blot has a large false negative rate and only tests one form of lyme.
I think they use amoxicillin for children (not sure though). The doc will know more.
You might want to pick up a copy of "Cure Unknown" by Weintraub.
Hang in there!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Posts: 9 | From New Jersey | Registered: Apr 2016
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TF
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posted
Pic of rash not working.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bcb1200
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There was no photo.
If it were me, I would likely find an LLMD for piece of mind. The western blot is likely garbage unless it is from a lab called IGENEX (which it won't be unless an LLMD did the test.) REgular western blots from Quest or Labcorp are usually not sensitive enough.
Dr. B's guidelines show pediatric dosages. For a bullseye you usually treat for 2-3 months. My daughter has done Ceftin and also Zithromax when she was bitten prior.
FYI, one time it took her bullseye over 6 months to show up.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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It seems insane to me that your daughter's doctor would see that rash and not at least put her on prophylactic antibiotics while you wait for test results to come in- I feel like that would be pretty standard care, even for a child, and especially for a child who is also complaining of knee pain.
You mention living in New Jersey, which has high rates of Lyme, yes? I'm not sure that I would automatically link the tick bite to the babysitter park visit. If it wasn't attached very well and hadn't fed, it likely wasn't the culprit. It's entirely possible she was bitten by another tick without your knowledge.
When your daughter took antibiotics for ear infections, what did she take? I'm curious to know if they were ones that target Lyme. And did she complain of any strange symptoms after starting any of them or seem to get more sick before she got better?
Posts: 2 | From Portland, OR | Registered: Apr 2016
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Brussels
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doesn't she have any GI tract symptoms? Mood swings, some fatigue or nervousness?
Most kids with lyme have GI symptoms.
I don't know if I would just jump into abx. They do not even solve the whole problem, not even if caught early. Not anymore.
the problem with coinfections is so complex, that i think only lucky ones find the good combination to fight lyme fast, even if caught early.
Specially for smaller kids that can only take some abx and not others.
I would go something like Buhner, or natural protocols.
Knee can swell in very short time, in case of smaller kids. Very fast, they can go from normal to unable to walk in a matter of hours. That happened to my daughter. It was unbelievable how fast they got swollen.
We used abx only at first. Later, never more, as she had so many gut issues. She is lyme free today, for the last 6-7 years.
A rash usually happens about 10 days after the bite. Less not. But more, yes.
A rash can come anytime. It usually means the immune system is trying to battle lyme, if it is an EM rash. It can come during treatment, or without treatment. Some people have the rash without symptoms.
Posts: 6199 | From Brussels | Registered: Oct 2007
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So she has been on a bunch of abx for ear infections over past few years. She had enough that we were considering tubes at one point (although she has had fewer this winter). I think for the most part she was on amoxicillin although know she has taken augmentin and probably others.
She has complained of stomach pain but she had been constipated and certainly hasn't had any unexplained nausea, vomiting or diarrhea.
Didn't notice her getting worse after taking any of the abx. Although I think the augmentin didn't help with her last ear infection and bronchiolitis (I think that is correct), so she ended up on a course of cefdinir.
As i said, seems perfectly happy (with the exception of occasional complaining about pain behind knee) but being three years old it's hard to tell how much is real versus how much she is making up or playing us.
Will try to repost rash photo.
Posts: 9 | From New Jersey | Registered: Apr 2016
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Quick update. Spoke to doc again. Agreed to put her on 30 day course of amoxicillin. One and a half teaspoons twice a day for 30 days. Seems to be the abx of choice for younger children.
Posts: 9 | From New Jersey | Registered: Apr 2016
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bcb1200
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That's a good start.
Dr B recommends 50 mg/kg/day of Amoxy for kids divided into 3 doses per day (every 8 hours.)
Dr B says treat for 6 weeks for a rash.
But at least you are on something. Better than nothing.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Judie
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Wow, that looks like my Lyme rash. I never saw the tick, just a rash popped up like that about a week after going to the park.
Posts: 2839 | From California | Registered: Jul 2012
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posted
That is a lyme bullseye em. I would get her into an LLMD and be sure to test for co-infections. Make sure you test for babesia and bartonella. You need different abx for bart and antimalarials for babesia. Both are common to have when bitten by a tick. Keep what you are doing with your current doctor, but get on as many wait lists has you can with recommended LLMDs. I cannot stress how important it is to be tested for co-infections, if she has one she will not get better without treatment for each. Treat lyme first then the co-infection. She will get better and be just fine. Just stay the course and read as much as you can on this forum.
Posts: 160 | From somewhere | Registered: May 2010
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Thanks all. Seeing a recommended llmd in July. On cancelation list so hopefully sooner. They said if western blot comes back positive to continue with amoxicilin until the appointment. That would be over three months on abx which seems like a long time???
Posts: 9 | From New Jersey | Registered: Apr 2016
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Brussels
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It does look like EM rash for me too.
After a couple of days of abx, it should become pale and disappear (then you are SURE it was borrelia). If after 2 weeks it does not disappear, it might be something else.
That happened to me (if my memory is good, it took about 7 days for it to vanish, but I continued taking doxy longer).
As for amoxy, that is what we did for my 2 year old daughter, after her first bite. She was too young for doxy. She took then 5 weeks of amoxy.
She was very fussy at first, and the amoxy made it worse (as it caused her tummy pain and I suppose herxes made her angry).
5 weeks amoxy did not solve her problem, only made it worse, unfortunately.
It took her 5 months to fix her tummy problems from either amoxy or lyme. Amoxy did NOT kill the lyme for good, as I suppose, there are too many coinfections with borrelia.
She still had full blown lyme symptoms (knee, tummy, eye floaters, tinnitus, food allergies increased, digestive problems, headaches, etc).
Amoxy does not take care of any co-infection, as far as I remember. Nothing. So I would add some Buhner's herbs FOR SURE.
I'm not saying that to scare you. Just to share our experience. We used amoxy on day 1 (the tick was still attached and tiny, not engorged). After that experience of 5 weeks, seeing her condition getting worse, we decided never to take abx again.
Every year, she would get bitten (me too) or whatever, a relapse, and we never used antibiotics anymore. It was a too high price to pay, for a small child.
We shifted to Buhner, homeopathics, microcurrent, infrared, supplements, Sanum nosodes, everything else except antibiotics.
It took her 4 years of treatment to stop the lyme problem. She got multiple bites (and still gets), we live in awfully infected place full of ticks... Beautiful post card like mountains in Switzerland. But full of infected ticks.
The only way for her, was to have her immune system better, stronger, like our neighbors that get constantly bitten, but never fall sick.
So I hope amoxy will solve her problem. But if not, there are other ways out. I would really add binders and add some of Buhner's herbs (specially for babesia and bartonella).
Posts: 6199 | From Brussels | Registered: Oct 2007
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Hi there. Quick update. Western Blot was negative for what that is worth. Guess could be a false negative or the bite was too recent to show lyme up on the test.
Still have the llmd appointment in July and hopefully will get a cancelation and get in there sooner.
My debate right now is whether to continue the amox beyond the 30 days per the suggestion of the llmd. Our regular doc pretty much said she would not extend the prescription past the 30 days and wanted to see how she was doing at the end of that time.
Posts: 9 | From New Jersey | Registered: Apr 2016
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TF
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Yes, the lyme doctor must not have considered or thought of the reality that a non-lyme specialist will NOT normally give a person more than 30 days of antibiotics for lyme.
However, if the child develops symptoms, I have known non-lyme specialists to give another 30 days of meds. So perhaps your pediatrician will do that if necessary. I kind of think she will since she wants to see the child at the end of 30 days. That is a really good sign of how she is thinking. She is not just dismissing this. Good for her!
Let's hope no symptoms pop up. That would be the best possible outcome.
And, if she was bitten on April 10, 2016, then it is way too early to expect the body to have produced antibodies to lyme. So, you most likely could not have gotten a positive test result on a Western Blot (an antibody detection test, not a direct test for lyme).
It generally takes about 6 weeks to develop enough antibodies to turn a lyme Western Blot positive. And, many folks NEVER get a positive WB even though they have lyme.
So, keep watching out for symptoms. If she experiences a Herxheimer reaction to the medication, then you can feel pretty sure she has lyme. Look for getting very sick, or just a total lack of energy, sleeping all the time, or complaining of pain, etc. for a few days while on the medication.
Regarding that rash, Europe has different strains of lyme from the U.S., so perhaps in Europe the rashes behave as Brussels stated. But, in the U.S., the rash does not necessarily disappear right away once you take antibiotics. Not at all.
In fact, when I got my lyme rash about 7 years ago, I got started on an antibiotic combination targeting the big 3 diseases (lyme, babs, and bart) within 7 days of the rash and still I had my rash for at least 3 weeks. Then, I kept the red dot in the center where the tick actually did the biting for about 6 to 8 weeks.
My famous lyme doc said "That is ground zero. That is why that red dot remains for so long."
So, as you will soon learn, there are probably NO hard and fast rules when it comes to lyme bites, symptoms, treatment, response to treatment, etc.
We all just have to learn to live with the uncertainties of it all.
The best document you can read to learn about this disease is the Burrascano Lyme Treatment Guidelines found here:
Dr. B was the number one lyme specialist in the world when he was practicing. And, he was the lyme disease pioneer. He wrote his Guidelines for other doctors to learn what he learned about treating lyme. And, he sent other doctors his Guidelines at no charge in an effort to educate our medical practitioners.
It will give you your education on this disease. So STUDY it. That is the very best thing you can do as a parent in your situation.
And, if you study it, you will find it a lot easier to understand the lyme specialist when you go, you will be able to ask educated questions, you will know what observations are important to the doctor, and you will be able to evaluate the treatment that your child gets.
It is not an easy read, but well worth the effort.
It made a total difference in my life. Once I studied it, I realized that I was receiving lousy lyme treatment and would never get well until I found myself a doctor who followed what Burrascano said to do.
So, I specifically looked for a lyme specialist who followed Burrascano, found one, and was completely rid of my lyme, babesiosis, and bartonella after 13 months of Burrascano-style treatment. I was symptom free after only 8 months.
This was so even though I went over 10 years with undiagnosed lyme disease! The doc is the key when it comes to getting rid of this disease. Can't emphasize that enough. The doc is the key.
So, learn how to find a good lyme doctor by reading Burrascano. Let the Guidelines guide you every step of the way.
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