Have posted on here a few times, don't want to go over whole history. But my now 6 yr old son has been dealing with lyme for 2 years.
Was misdiagnosed for 9 months, though had classic symptoms. (rash, flu). He was diagnosed after his knee blew up. Has lyme arthritis.
After IMO a year of mistreatment, finally switched peds.
MRI was done last week because son has been having visual hallucinations, eye pain, tingling sensation in head/headaches, gastic issues.
Onset of visual issues started around last May. Recently son says "eyes have been pretty good" can this resolve itself? Still has headaches, gastric issues, concentration issues.
MRI was normal, as was his EEG. Last blood tests in May showed 7 positive bands.
Can son have neuro lyme with a normal MRI? Son is having tonsils out Oct 9th, so no more tests until after. Have follow up with pedi end of Oct.
Any input would be greatly appreciated.
Posted by feelfit (Member # 12770) on :
Mom,
I have fairly severe neuro lyme with eye symptoms, headaches and pressure. My MRI's and SPECT scans are normal.
Hope this helps and that your son continues to improve.
Feelfit
Posted by DaveNJ (Member # 17362) on :
Songbird,
my neuro stuff wasn't so bad but i had an abnormal MRI...
That forced the doctors to give me a spinal tap. It was clean thank god.
MY LLMD explained that their is a differnce between LYMe in the CNS and the peripheral nervous system. That could explain this.
And yes after my acute onset of neuro stuff it dissappered for two months and thne flared again and then cleared u. i've been on abx for 17 days and the reaction is finally coming on and the neuro symptoms are flaring once again.
Dave
Posted by Michelle M (Member # 7200) on :
It sounds as if your son was not treated adequately.
Nor will he be, with this pediatrician.
You need to realize that he will not get better until you take him to an LLMD. A duck (non- lyme-literate doc) will not be willing or able to properly assess and treat him -- in fact, will be adverse to doing so as it will run counter to the IDSA guidelines.
He may have coinfections. Those will not have been checked for. Those would persist regardless of antibiotic treatment (most of them, that is).
See Dr. J. Your child's future is at stake. He does not turn people away, typically. The wait may be a while, so get on his list. Maybe your pediatrician could even call him, though I wouldn't hold my breath for that.
The absence of findings on MRI is meaningless. Even people with frank neuroborreliosis only have positive MRIs about a quarter of time or so. Your son's symptoms are far more compelling, in one so young.
The good news is that children respond quickly to treatment and bounce back. But you have got to make it a priority to get him to an LLMD. Shift priorities away from trying to get non-educated doctors to pay attention (it won't work) and get your son to an expert in tickborne diseases now. It will be one of the most important things you could ever do for him.
Good luck and hang in there!
Michelle
Posted by lou (Member # 81) on :
I did not see any information that would lead me to believe this child is not now getting adequate treatment from his current doc. Maybe Michelle responded that way because so few pediatricians do treat tickborne infections well.
Maybe we need more info on the situation, or maybe it was in previous posts.
MRI reveals structural problems. Mine was normal. SPECT scan reveals function problems. Mine was abnormal and that is more typical of lyme patients. My EEG was also abnormal. But I don't think there is a 100% correlation on any test with lyme symptoms.
Posted by candlequeen (Member # 17054) on :
I have headaches and neurological issues from Lyme. I had a brain MRI that came back normal doesn't mean there still aren't problems. I sometimes forget words that i never would before. It has gotten better since i am under treatment but I still have problems like i forgot my pin # to my make card yesterday. I NEVER do that.
Posted by adamm (Member # 11910) on :
Most neurologic Lyme sufferers will have clean MRIs. Doesn't
mean anything.
Posted by s0ngbird1962 (Member # 16395) on :
Thanks...
As for my son being treated? He hasn't had any treatment since his May/June '07 when his knee blew up/arthritis. He had 2 rounds of amoxycillin.
I thought things had calmed down, but then these other symptoms appeared. Have seen LOTS of "ologists" and have had many tests.
Pedi wouldn't acknowledge these symptoms could be related to lyme, new pedi agrees it could be.
It does seem that this new pedi is willing to refer, I will need his referral to get insurance on-board. If not possible and symptoms persist, we'll get to Dr. J, but I worry about the cost. I know that sounds bad, but it's also a part of our reality....
Posted by lou (Member # 81) on :
Someone suggested that maybe your new pedi might consult with Dr. J. That would be the best option, considering the waiting list for Dr. J. Also, it might educate another pediatrician, which is very much needed.
It does sound like your child was not adequately treated and might very well still have lyme.