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Lyme Disease Message Board

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New here - this will be long. Thanks for being here!

Quick history:

2 sons with Lyme in last 4 yrs. Older, now 16, had single EM rash two weeks after returning from scout camp in Lyme endemic area in Aug 2002. Treated 3 weeks with amoxicillin and no further effects. Younger, now 14, had know embedded deer tick bite at same scout camp, also Aug 2002. His dad removed the tick from his face. No EM rash but 10 days after bite had sudden severe illness. 105 degree temp with chills, severe leg pain and weakness, severe headache, vomiting. Carried him into ER. ELISA was positive but Western Blot negative (only 10 days after exposure). Treated with 3 weeks amoxicillin. Ok until early July 2004. One week after coming home from same scout camp had headache, sore throat, extreme dizziness, and fatigue. Strep negative but treated as if strep with amoxicillin. Two weeks later still dizzy and extreme fatigue, what he described as face rushes, headache, dizziness, vision blackouts when going from laying down to standing. Also irritable/irrational. Tested for Lyme and Mono. Mono was positive and Lyme tests were cancelled. One month after onset had EM rash over entire body. ELISA positive and Western Blot positive. Treated for 3 wks with amoxicillin. Still very fatigued in mid August and did 2nd round of amoxicillin. Could not tolerate doxycycline. October still very fatigue and did 3rd round.

Ongoing physical symptoms are: mild to moderate fatigue, occassional migrane, 6+ episodes of brief (10-15 minutes) facial numbness, one episode of scalp numbness. Occassional blacking out when going from laying down to standing, occasional night sweats. Since fall of 2004 significant drop in performance at school. Near failing in multiple classes. Prev A/B student. Now unable to focus in class, not completing work, not remembering to turn in completed work. He had previous problems with disorganization and staying on task but this is [U]much[/U] exacerbated since Lyme. Pediatrician currently doing ADHD assessment. Had joint conference with his teachers, school psych, principle, counselor, us, and our son last week. One teacher was very understanding and wanting to help, another told him he is openly defiant and said he was manipulating and controlling all of us. (This teacher was aware of our concerns with possible Lyme effects and current ADHD assessment). Principle and school psych suggested off campus alternate school. No way! The only thing keeping him going at school is connections with his friends. Our son was near tears and very angry. It felt like a firing line.

Need some help here. First, we are in western Wisconsin and looking for a LLMD, preferably a pediatric neuro or neuro-psych with experience in cognitive effects of Lyme in adolescents. We are within driving distance to Mayo Clinic in Rochester MN or Minneapolis/St Paul area as well as Madison or Marshfield Wisconsin. We need to know what cognitive tests to ask for and also if we should request SPECT scan. We also need to know what blood work should be done to determine if there is ongoing infection and effective ways to advocate for him if the tests are negative. Next, if there are parents who have initiated an IEP or 504 plan for their child because of cognitive Lyme effects, we need to know what modifications at school have worked.

Finally, if this isn't enough, I was diagnosed 3 yrs ago with Sjogren's Syndrome after unexplained swelling in my left knee with positive Rheumatoid Factor and ANA tests. Other Sjogren's antibodies (SSA and SSB) are neg. ELISA was neg and no Western Blot ever done. I have ongoing fatigue, joint pain and stiffness, along with dry eyes, cold sensitivity, unexplained hair loss, heart palpitations, brain fog (forgot how to fill out a check one day), and frequent misuse of words. No history of tick bite or EM rash. Still would like to rule out Lyme but with negative ELISA they won't order Western Blot.

Thanks in advance for any and all help.
Hello and welcome MO,

You need to have the Igenex test done.

I really feel for you and your son. It's very frustrating. Even when you do test positive for lyme, as I found out, you still get an attitude. Yesterday I was giving a dr. my history and said I was being treated for lyme and the sarcasm began. I noted a tone of disrespect when asked, "And who is this specialist?" The one I'm seeing treats pretty cautiously and does bloodwork to see how well you tolerate meds. Still the dr. yesterday was in disbelief of the length of time I was taking antibiotics.

I'm kind of going through what you are with my sons. One of them is being treated for lyme and is doing very well academically in school. He is getting an EMG to make sure the lyme hasn't started affecting his nervous system. I'm hoping it is just restless leg syndrome, otherwise he has to do IV again. The reason for the test is that the pediatric neurologist said that if it is starting to affect his nervous system, he will suffer academically, as you see is happening to your son.

I have removed ticks from my other son and he's had two Western Blots, which were negative, but the test I need to do is the Igenex. My son's (who has lyme) and my Western blots were both negative at least 5 times after treatment and then we did the Igenex, which was positive for us both and my son also had a co-infection, bartonella (cat scratch fever).

It is an expensive test, but as anyone here will tell you, it will be the best money you ever spend.

My son who has not tested positive for lyme is having trouble with his reading and has woken up in the middle of the night crying with ankle and knee pain. I find it hard to notice lyme symptoms in children because they don't really complain. His reading is very choppy. It's not that he can't read and I know what's going on because I do it too. His comprehension is poor. I also tend to read without comprehending, I enjoy reading, but sometimes have to read something several times after I realize I wasn't comprehending. I interpret letters differently or entire words differently quite often. When I was first being treated from lyme, entire sentences would fade and I wouldn't even see them. From what I learned, there are different types of dyslexia and I think this is what is going on with us. My son may not have lyme, so I could be wrong in his case. But they are supposed to do the joint conference at school also. He was also having crying jags at school and at home. In my experience the symptoms come and go and/or change.

Lyme is very common in my area, so most teachers and adminstraters are very understanding. I have heard stories of behavioral changes in kids who were diagnosed with lyme because of perceptive teachers acknowledging that a child wasn't being themselves.

Hope you are able to find out what is going on, so you can get the proper treatment. If he is positive, the next step will be to make sure he is being treated properly and for co-infections.

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