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4 yo with recurring skin rash and knee pain
My 4 year old daughter has had a recurring itchy skin rash on the back of her neck since June 2010. It looks more like little scratches than a rash, but it comes and goes (once a month or so-not sure what triggers it). She has also been complaining of aches and pains in her legs/knees for that amount of time and it seems to be more frequent. Tonight she mentioned that one of her elbows hurts to bend. Lastly, she complains of itchy spots on her body: elbows and stomach mostly; sometimes there are little pin-point like dots in those areas. I've taken her to the doctor six times and each time they aren't sure what it is and just throw stuff at her to try to make it go away. She was on antibiotics for a while and skin creams, it all keeps coming back. We live in an area that has a high incidence of Lymes disease, although this isn't the typical bulls eye rash. A screening test (Vidas/Biomerieux) for Lyme's was done in August and it was negative. Is it worth it to ask my doctor to do the western blot screening test for Lyme's? We do have a cat that escapes outside periodically and we had her screened for toxoplasmosis and that came up negative (I'm not sure what the screening test used for that was). We also had her tested for ringworm (although the rash was mostly gone when they did the test) and that came up negative as well. Do you have any ideas that I could bring to my doctor as possibilities? Our doctor has no idea and when we went to see the dermatologist, they looked at her and said that it looked like eczema and threw more expensive creams at her. My biggest concern is if it is lyme's, this could affect her for the rest of her life. Thank you for your time.
It's worth it to thoroughly investigate Lyme and their are clinics which treat on Clinical symptoms if tests are negative. You are surely not overreacting and Jackie gives great information.
No, you're not overreacting. I would do exactly what you are doing.
If the local LLMD can't see you, ask if he/she can suggest another doc.
Sounds like all the tests are quite imperfect, which is why it's extra important to get a wise doc who knows how to look at the symptoms and history AND to look at the patient instead of just the test results.
You're right, 'LLMD' is a great name ... it seems warm and fuzzy to me, like a LLama!
Let us know how it goes, okay? fingers crossed [X]!!!
If the local LLMD can't see you, ask if he/she can suggest another doc.
Sounds like all the tests are quite imperfect, which is why it's extra important to get a wise doc who knows how to look at the symptoms and history AND to look at the patient instead of just the test results.
You're right, 'LLMD' is a great name ... it seems warm and fuzzy to me, like a LLama!
Let us know how it goes, okay? fingers crossed [X]!!!
Thank you so much for your post. Sometimes I think I'm over reacting, but this helped me to see that I need to pursue this. I did put a phone call into a doctor in our area who has a good track record in dealing with Lyme patients, although they aren't accepting any new patients. They said they would get back to me, so I'm waiting for the call. I will also look for LLMD (love that acronym) in our area online and see what I can find.
The VIDAS/Biomerieux method is a screening method. I looked at the company's website and they say it is only 73% accurate at catching a positive. Thank you for the information on the other co-infection bacteria/parasites. I will bring that up with the doctor I find too.
The VIDAS/Biomerieux method is a screening method. I looked at the company's website and they say it is only 73% accurate at catching a positive. Thank you for the information on the other co-infection bacteria/parasites. I will bring that up with the doctor I find too.
Oh, yes, Wisconsin is very popular with Lyme ticks and their mischief. I'm sorry to hear about your daughter and am glad you are pursuing further advice. The current docs may be right, but then again ... a little further checking can't hurt.
You might already know that Lyme ticks often carry other diseases ("co-infections") in addition to Lyme (~50% of the time, I've read), including bartonella, babesiosis, ehrlichiosis. Those diseases have to be tested for (and sometimes treated) separately from Lyme, and it takes an MD who knows the symptoms to know to order the tests for the co-infections and to make the diagnosis. (The first time I got Lyme, I also had babesiosis; the second time, it came with Ehrlichiosis -- totally different symptoms.)
Also, it's common not to see the tick or get a rash. Sometimes the rash is on the scalp and doesn't show; sometimes it just doesn't show at all, ever. Everyone is different. Docs tend to want to see the tick and/or the rash because it helps them make the diagnosis, but absence of tick or rash doesn't mean you don't have Lyme. Also the bullseye rash is unique to Lyme, but Lyme doesnt require that shape of a rash, or even any rash at all. It just makes the diagnosis easier for docs to make.
I'm not familiar with Vidas/Biomerieux testing, but then I'm not medically trained. The other testing you mention, ELISA and Western blot, are notoriously inaccurate, especially after a period of time has passed since the likely infection date (now 5 months for your daughter). However the testing can be useful in the hands of a doctor who knows how to read the results, and LLMDs understand more about that than regular docs usually do. Start a file and keep copies of all test results and doc's comments -- you never know when they might come in handy down the line.
You might also search online for "bartonella photos [or pictures]" and see if the scratchy marks look like that; also try searching for pictures of ehrlichiosis. The pinpoint rash you describe sounds like the tiny dot hemorrhages I got with Ehrlichiosis. Bartonella is said to look like scratches. With pets and plants around, infection is always possible. The joint pain could be a symptom of Lyme, as you've already figured out.
Given the reaction the docs have had so far, I would in your situation take copies of all tests done to date and find an LLMD, meaning a 'Lyme Literate MD' who takes Lyme and its coinfections more seriously. LLMDs don't call themselves that -- it just helps us patients distinguish between the regular clueless docs and the ones who think bigger thoughts. The nonLLMDs scoff at the LLMDs and say awful things about them sometimes, but I'm very glad I ignored the regular docs and found treatment.
I just googled "LLMD Wisconsin" -- it's a place with regrettably few of them. Also try googling "LLMD Chicago" -- there is a Lyme patients group in the Chicago area (they might have leads close to you), and the third hit I got mentions an LLMD in Wisconsin. I would read a page or two of the search hits and figure out from there which way to go. LLMDs range (like regular MDs) from the wonderful to the weird, so just use your sixth sense. If the first one doesn't feel right, try someone else. It's a rapidly changing area of medicine, so you'll need to keep a watchful eye.
Depending on where you are in Wisconsin, another state may be closer, but if you have to travel, I'd do it. Lyme won't go away on its own, and your daughter's docs don't seem to take the progressive views held by LLMDs and ILADS.
Let us know if we can help further, okay? You are asking all the right questions.
Regular docs mean well, but there is a huge argument going on in the medical community about whether Lyme is an easy disease to diagnose and cure with a couple weeks of antibiotics, or whether Lyme has particular characteristics that science is still trying to figure out and requires longer treatment due to particular characteristics of the bacteria.
==============================
These websites may have referral functions where you can ask to be sent the name of an LLMD in your general area:
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
==============================
This website is the main one for LLMDs, and while it is accessible to patients, it can be pretty slow reading at first. Don't be overwhelmed by it, just know that it's there when you are ready to dig in:
ilads [dot] org
You might already know that Lyme ticks often carry other diseases ("co-infections") in addition to Lyme (~50% of the time, I've read), including bartonella, babesiosis, ehrlichiosis. Those diseases have to be tested for (and sometimes treated) separately from Lyme, and it takes an MD who knows the symptoms to know to order the tests for the co-infections and to make the diagnosis. (The first time I got Lyme, I also had babesiosis; the second time, it came with Ehrlichiosis -- totally different symptoms.)
Also, it's common not to see the tick or get a rash. Sometimes the rash is on the scalp and doesn't show; sometimes it just doesn't show at all, ever. Everyone is different. Docs tend to want to see the tick and/or the rash because it helps them make the diagnosis, but absence of tick or rash doesn't mean you don't have Lyme. Also the bullseye rash is unique to Lyme, but Lyme doesnt require that shape of a rash, or even any rash at all. It just makes the diagnosis easier for docs to make.
I'm not familiar with Vidas/Biomerieux testing, but then I'm not medically trained. The other testing you mention, ELISA and Western blot, are notoriously inaccurate, especially after a period of time has passed since the likely infection date (now 5 months for your daughter). However the testing can be useful in the hands of a doctor who knows how to read the results, and LLMDs understand more about that than regular docs usually do. Start a file and keep copies of all test results and doc's comments -- you never know when they might come in handy down the line.
You might also search online for "bartonella photos [or pictures]" and see if the scratchy marks look like that; also try searching for pictures of ehrlichiosis. The pinpoint rash you describe sounds like the tiny dot hemorrhages I got with Ehrlichiosis. Bartonella is said to look like scratches. With pets and plants around, infection is always possible. The joint pain could be a symptom of Lyme, as you've already figured out.
Given the reaction the docs have had so far, I would in your situation take copies of all tests done to date and find an LLMD, meaning a 'Lyme Literate MD' who takes Lyme and its coinfections more seriously. LLMDs don't call themselves that -- it just helps us patients distinguish between the regular clueless docs and the ones who think bigger thoughts. The nonLLMDs scoff at the LLMDs and say awful things about them sometimes, but I'm very glad I ignored the regular docs and found treatment.
I just googled "LLMD Wisconsin" -- it's a place with regrettably few of them. Also try googling "LLMD Chicago" -- there is a Lyme patients group in the Chicago area (they might have leads close to you), and the third hit I got mentions an LLMD in Wisconsin. I would read a page or two of the search hits and figure out from there which way to go. LLMDs range (like regular MDs) from the wonderful to the weird, so just use your sixth sense. If the first one doesn't feel right, try someone else. It's a rapidly changing area of medicine, so you'll need to keep a watchful eye.
Depending on where you are in Wisconsin, another state may be closer, but if you have to travel, I'd do it. Lyme won't go away on its own, and your daughter's docs don't seem to take the progressive views held by LLMDs and ILADS.
Let us know if we can help further, okay? You are asking all the right questions.
Regular docs mean well, but there is a huge argument going on in the medical community about whether Lyme is an easy disease to diagnose and cure with a couple weeks of antibiotics, or whether Lyme has particular characteristics that science is still trying to figure out and requires longer treatment due to particular characteristics of the bacteria.
==============================
These websites may have referral functions where you can ask to be sent the name of an LLMD in your general area:
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
==============================
This website is the main one for LLMDs, and while it is accessible to patients, it can be pretty slow reading at first. Don't be overwhelmed by it, just know that it's there when you are ready to dig in:
ilads [dot] org
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