Approximately six weeks ago my 7 year old son came home from a visit to his grandmothers in the woods. He had what looked like a half inch high blood balloon on his shoulder. It was very difficult to pull off. I looked inside when I pulled it off and it appeared spongy.
7 to 10 days later I noticed a bulls eye rash, although how long it had been there I do not know. We started two weeks of amoxicillin.
Near the end of the two weeks he got headaches and a fever. We went to the er in St. Louis and were told, no lyme in MO.
Nevertheless he was started on doxy but the test for lyme came back neg while the test for mono was positive.
After reading further info here on the test results not always being right I am lost on what to do.
What should my next steps be here? I am desperate, this child has enough issues with bipolar and sensory integration issues without adding a missed lyme diagnosis.
Posted by cbb (Member # 788) on :
Hi Sarah, Welcome to LymeNet.
I don't have a medical background but will share my opinions based on what I've learned from experience - 3 cases of Lyme in my family. My grandson was 7 when he got Lyme but it was 5 yrs before he started adequate treatment.
Sometimes the bull's eye rash will stay for a good while. IF the rash is still visable, take a picture with a coin or ruler to show the size. Keep a copy with your son's permanent medical info at home.
What dose of Amoxicillin did he take per day? The typical dose is not strong enough according to the drs who treat Lyme almost exclusively.
page 17: Antibiotic Choices Amoxicillin - Children: 50 mg/kg/day translates into about 800 mg a day for a 35 lb child
page 19: Treatment Categories Early Localized - single bull's eye rash, no symptoms: Children oral therapy for 6+ weeks.
When symptoms are present, treatment should continue for 4 to 8 weeks after ALL symptoms are gone.
You need to see a Lyme Literate Med Dr (LLMD) to start adequate treatment.
Sorry I don't have more time now. Have an appt but will check back a little later.
Posted by BBWagoner (Member # 8221) on :
Hi, I just wanted to let you know that I was in St. Louis hospitals and was told there was no lyme. But they also didnt know what to do with me and misdiagnosed me with MS and the false diagnosis set me back for the treatment of lyme. I knew something wasnt right when I was getting treated for MS and my symptoms were not getting better.
I dont know how they can say Lyme is not in this area! IT IS!! I wish doctors would start listening to us!!
Lyme test in local labs arent always accurate. Most Lyme literate doctors prefer IGENEX lab.
My two boys have had lyme and its a serious disease to leave untreated. IF i were you I would see a lyme literate doctor. I go to one in Springfield, MO. I will give you the docotors information if you want it. I wll pm it to you!
Kids respond well to the treatment and mine are doing great and off there medicine! It took about 6 months but they are back to themselves!
I wish you luck!! I know how i can get upseting when the doctors look at you like your crazy for thinking lyme. But take care of your son!
The fact that he had a tick then developed a rash is a huge red flag!!
Posted by Aniek (Member # 5374) on :
I was infected when I was 12. I had a bull's eye rash, but nobody knew what it was back then. When my mom recognized the rash in a picture in the NY Times on Lyme, the doctor said not to worry because I wasn't showing symptoms.
17 years later I lost the use of my hands for about a year. I have had pain all through my adolescence and adult life.
You don't want that to happen to your child. Make sure he gets enough treatment so you are sure it is gone, if it is Lyme. You also want him tested for coinfections.
Post under the seeking doctors forum, I believe there is a LLMD (Lyme Literate Doctor) in MO I've heard mentioned on this board.
Posted by cbb (Member # 788) on :
Noticed the info about the LLMD in Springfield was being sent to you. If you haven't called yet, be sure to tell them this started about 6 weeks ago.
Maybe they can work you in earlier than most new patients.
IF it's Lyme, the earlier the treatment, the better the results. If a person has had Lyme for a long time, then there is not as much urgency for a diagnosis & treatment. Another month won't make as much difference as when it's only 6 weeks.
If you can, get a copy of the Lyme test. It was probably the ELISA which is not that reliable. Brochure at www.ilads.org says it misses 35% of culture proven LD.
Also, it sounds as if the test was done too soon. It takes 4 to 8 weeks for the body to produce enough antibodies to give a positive test result.
Please make an appt with the LLMD in Springfield - ASAP. It could be the most important thing you ever do for your son.
Keep in touch & ask as many questions as you need to. We care!!
Posted by oxygenbabe (Member # 5831) on :
It's not lyme per se (borreli burgdorferi sensu strictu) it's known as STARI (southern tick associated rash illness). Google "Masters"--he did the work on it. It is essentially a different strain of lyme, clinically speaking, and needs the same antibiotic treatment.
Posted by Lymeindunkirk (Member # 7118) on :
Don't forget that with children they often are misdiagnosed in school as having a learning disability or being ADD/ADHD. If you child is 7 now it may not get noticed in school, if he remains untreated for lyme, until third grade. My son's school implied he was inattentive ADD in 3rd grade. We didn't to even get him tested until mid year 4th grade. Sometimes its hard to really notice the neuro symtoms in younger boys. As a mother though you will notice. Pay attention to how many times you have to tell him to do something. Can you tell him to do a few things and have them all completed or does he forget? That forgetful thing is a clue right there. Please pay close attention. I know too many children with lyme and its more unfair to them then anyone. Go to CALDA lyme and order the Childrens Treatment issue. It has a lot of very valuable info.
Posted by spiral (Member # 9217) on :
hope all the missouri folks can get you to the right docs -- remeber Lyme is a "clinical diagnosis." other testing is worthwhile, and a positive test will help with your insurance, if not your piece of mind. please make sure they test for all the co-infections as well. amox is a good start but pure doxy may be better -- and for a long time. some of us watched our kids get treated and not fare well because it wasnt for long enough, and because many drs are still not agressive enough. even the most conservative guidelines call for 3-4 wks, but most say 6 wks now....ILADs calls for more. if he still has symptoms at the end of treatment -- continue being treated. the complications are not worth it. some of us parents know!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by oxygenbabe: It's not lyme per se (borreli burgdorferi sensu strictu) it's known as STARI (southern tick associated rash illness). Google "Masters"--he did the work on it. It is essentially a different strain of lyme, clinically speaking, and needs the same antibiotic treatment.
No lyme in Missouri?? But Dr Master's lives and practices in Missouri? Very strange! Those ducks in St Louis have their heads in the sand!!
![[Eek!]](eek.gif)
But Dr Master's lives and practices in Missouri? Very strange! Those ducks in St Louis have their heads in the sand!! ![[cussing]](graemlins/cussing.gif)