posted
Hello, I am sorry to be posting so soon, we have just had a full day of medical facilities and tests. We live in the San Fransisco Bay area and have a wonderful pediatrician. I trust her instincts almost as much as my own, so I am not second guessing her preliminary diagnosis. I have a few questions that I didn't think of and hope someone can offer insight. My family had a wonderful trip to s. Washington via Sacramento(Ca), and after much wilderness and animal exposure came home ill. She first started feeling ill and I assumed a cold, then she began getting bumps on her ankles and calves. At this point, I assumed fleas, but they started blistering and then scabbing over. She has had a low grade fever/malaise/sore throat. This morning she had a strange red ring w/ a dark spot in the middle under her arm. Honestly, I thought of ring-worm, but it was not scaly. Her doctor has requested the blood tests and ordered high dose amoxicilin 3x dy for ten days, dr visit in 1 week, then another ten day cycle. My ?'s:
1. Many have mentioned other infections not treated simultaneously, what are you refering to? 2. Would the blood workup be premature? I was under the impression that the earliest(most reliable test window) is about a month after diagnosis.
3. Should I ask if they are performing the ELISA/IFA or the PCR? 4. Where to go from here?
I am very familiar with other diseases, I have a son who has had Kawasaki syndrome(w/cardiac involvement, and lupus). I am not looking forward to another round of intense medical intervention. Any Rays of hope? Sorry for the long post, just a bit over the edge tonight. Thanks 3.
Posts: 4 | From san pablo,ca,usa exNew Yorker!! | Registered: Jun 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Momma, I did'nt notice anyone else answering you so I thought I would. First it's good your girl is on abx immediately. I do get some bubbling and scabbing over on my hand but this was a late symptom. The bullseye could mean lyme but the other sounds like co-infection. Your son may have lyme also and has been misdiagnosed it happens a lot to us. only way to figure is give him abx and see if his symptoms increase and then get better. The testing is pretty bad out there...but yes I believe a couple of weeks into the disease is recommended....however your child taking an abx may net results for you on a western blot or pcr...but if they are negative at this point I would'nt put too much credance in them...
I have had negs in between positives for years and even sending blood at same time to two different labs I got conflicting results...one lab says I'm positive and one negative...same blood time window...go figure.
Rockymountain spotted fever may be the cause for the erruptions...I'm not sure.
Anything else I can help you with email me zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Welcome to LymeNet. Don't have much time, but wanted to mention a couple things.
It is imperative that your child receive adequate treatment!!
How much Amoxicillin is she taking per day? How much does your child weigh?
That means a strong enough dose for a long enough time. If not, the Lyme bacteria that survive can hide out & some time in the future will flare up. It will be very difficult to deal with at that time.
Go to www.ilads.org/burrascano_1102.html Print "Diag Hints & Treat Guidelines..." 32 pages of excellent info by one of the best LLMDs (Lyme Literate Med Dr).
This translates into: 35 lb child needs about 800 mg/day 70 lb child needs about 1600 mg/day
page 17-18: Treatment Categories Early Disseminated Disease - milder symptoms present for less than 1 yr. Children: oral therapy with duration based upon clinical response.
Dr Charles Ray Jones, Lyme Pediatrician in New Haven, CT, recommends treating until ALL symptoms have been gone for 2 months.
He has given permission for his name to be used here. Dr Jones' Phone # 203 - 772 - 1123 Your pediatrician could call & consult with him. He's treated over 7,000 children.
Also - antibiotics (abx) kill good bacteria along with the bad, so the good must be replenished to prevent a systemic yeast infection. In Dr B's "Guidelines", he discusses acidophilus on pages 24 & 29.
I just want you to double check & be sure your daughter gets adequate treatment.
You only have one chance to treat early. If you miss the opportunity, it won't come around again.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Photograph the rash with a ruler in the photo every day or so. Good quality photos, go in your permanant medical file. Can you post it here?
A bull's eye rash is diagnostic of Lyme, period. No further Lyme tests are needed for diagnosis. However, co-infections are possible.
It's premature for antibody tests (ELISA, Western Blot)-usually 4-6 weeks are needed for the body to build a detectable immune response. PCR is most likely positive in the first 2 weeks.
Please post as much and as often as you need.
Your regular ped doc may be great but does he/she specialize in TBD (tick borne disease)?
How much amoxicillin? How old, weight? www.ilads.org guidelines-please note treatment length-is it 6 weeks minimum? www.canlyme.com
Please educate yourself, do not accept one person's opinion.
Contact the support groups in your area (at the left) for doctor referrals. It may take weeks/months to get an appt.
Lupus and Lyme have overlapping symptoms. Suggest getting your son tested at Igenex (www.igenex.com)
Come back and ask all the questions you have, please.
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
The other diseases (Bartonella, babesiosis, ect) are other tick borne illnesses. Many people who have Lyme also have other tick diseases. This is not unusual. But these diseases are treated with differant drugs.
If you have a blood test too early, or too late, there can be a problem with the tests. However, you should be aware that Lyme is not a diagnosis made on testing. It is a clinical diagnosis. A negative test does not mean that you dont have Lyme--it just means you are not making antibodies to the disease.
You should always know what type of test is being run & get a copy of the test. You should also pick your lab carefully. IGENEX is a good start: http://www.igenex.com
posted
Thanks to all of the responses, I am not taking your advice lightly. My daughter is taking 750 mg daily, she weighs 71 lbs. I will speak with her ped today and request a dosage increase. I did take pictures of the rash and the leg bumps. I will try to publish them asap, I am also in school full time for Summer, so it may be a bit later than sooner I am doing more research on the lupus/KD/lyme connection and will let you know if there is any new news for my son. I wish all of you well and appreciate the support and information. Blessings
quote:Originally posted by cbb: Welcome to LymeNet. Don't have much time, but wanted to mention a couple things.
It is imperative that your child receive adequate treatment!!
How much Amoxicillin is she taking per day? How much does your child weigh?
That means a strong enough dose for a long enough time. If not, the Lyme bacteria that survive can hide out & some time in the future will flare up. It will be very difficult to deal with at that time.
Go to www.ilads.org/burrascano_1102.html Print "Diag Hints & Treat Guidelines..." 32 pages of excellent info by one of the best LLMDs (Lyme Literate Med Dr).
This translates into: 35 lb child needs about 800 mg/day 70 lb child needs about 1600 mg/day
page 17-18: Treatment Categories Early Disseminated Disease - milder symptoms present for less than 1 yr. Children: oral therapy with duration based upon clinical response.
Dr Charles Ray Jones, Lyme Pediatrician in New Haven, CT, recommends treating until ALL symptoms have been gone for 2 months.
He has given permission for his name to be used here. Dr Jones' Phone # 203 - 772 - 1123 Your pediatrician could call & consult with him. He's treated over 7,000 children.
Also - antibiotics (abx) kill good bacteria along with the bad, so the good must be replenished to prevent a systemic yeast infection. In Dr B's "Guidelines", he discusses acidophilus on pages 24 & 29.
I just want you to double check & be sure your daughter gets adequate treatment.
You only have one chance to treat early. If you miss the opportunity, it won't come around again.
Posts: 4 | From san pablo,ca,usa exNew Yorker!! | Registered: Jun 2005
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I am doing more research on the lupus/KD/lyme connection and will let you know if there is any new news for my son. I wish all of you well and appreciate the support and information. Blessings
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