posted
I posted this in General Discussion and was advised to repost it to this forum. Sorry for the cross post.
My son was bit by a deer tick in 2005 when he was 13. He had the classic bulls eye rash and was treated with 2 weeks on antibiotics.
About a year later he started having headaches and daily nausea and vomiting. The first few times lasted a week or two and we thought it was just a virus. He was then diagnosed with abdominal migraine by a pediatric neurologist. He also suffered from insomnia. His episodes got longer in duration and closer together until he had his symptoms constantly.
His neurologist backed off from her diagnosis of migraine and referred him to to a therapist. His therapist told us that she felt his symptoms were physical in nature and any stress he had was a result of his symptoms and not a cause. He missed so much school and went from an honors student to barely getting by in school.
This fall he started having dizzy spells and occasionally fainting. He was referred to a cardiologist and is awaiting further testing. But his heart is not doing a good job of regulating his blood pressure when he changes body position. Like most of his symptoms, this comes and goes.
I also asked his pediatrician about chronic lyme and he referred us to a pediatric infectious disease specialist. I told her our story and she did not think it was possible that he had chronic lyme, and in fact she told us that for the most part she didn't believe it existed. She did order a blood test which showed no antibodies, so as far as she was concerned that was the end of the story.
His most frightening symptom started late this fall. He occasionally wakes up unable to move or feel his legs from the hips down. The feeling does gradually return.
This happened again last week and we took him to the emergency room at our local hospital. They transferred to another hospital(where most of his specialists practice) where I thought he was scheduled for an MRI. I had to fight for them to pay any attention to us at that emergency room.
He was finally given an MRI a full 12 hours after he woke up with the paralysis, which at this point was fully resolved. Surprisingly (not!) at that point the MRI showed nothing abnormal and the emergency room neurologist informed us, in front of my son, that they believed his symptom was caused by stress and that he should see a psychiatrist. As you can imagine, I was not pleased. The only real stress he has in his life is from his illness!
So this is where we are. I had already made an appointment with him to see a another therapist because he is understandably angry and depressed about his situation. I however do not believe that his illness is all in his head. He is a happy, good natured, well adjusted kid who was as healthy as could be before his tick bite.
I am not tied to him having lyme, but just want to find out what is wrong with him and help him get better. As you can imagine, my heart is breaking for him. Any thoughts or advice would be extremely appreciated.
Posts: 3 | From Souther NH | Registered: Mar 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
first off 2 weeks antibiotics isn't nearly enough even for early Lyme. So on that sentence I'd say yea...looks like still Lyme.
posted
I had similar symptoms regarding the "passing out" but I never actually passed out but would come very close.All Cardio tests were normal except a Tilt Table test which confirmed Neurally Mediated Hypotension. This is seen in many lyme sufferers. I had to increase my fluid and salt intake which has helped some. They can put you on drugs to regulate the BP but I havent done that yet.
Posts: 29 | From New York | Registered: Apr 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
These may offer you some clues to infection. I would run as fast as I could get in to a LLMD.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
YES! I would get to an LLMD and get him on abx as soon as possible. It sounds very much like what happened to my husband - under treated the first time around and then slowly worsened. His doc didn't believe it was lyme when headaches started and he had a negative test, but we got him to an LLMD, who tested him and it was positive through Igenex.
Some story with my 3 young children. We all have it from the ticks in our backyard.
You might get an Igenex Western Blot test done in the meantime if you can find a willing doc to sign the requisition form.
Keep reading and learning - this site is the best! Read Dr. Burrescano's guidelines as a start. Other good books - Pam Weintraub's Cure Unknown, and Everything You ever Wanted to Know about Lyme Disease by Karen Vanderhoof Forschner.
Good luck to you ....your son will get better and the psych stuff and other things will go away with treatment. It's a long road, but one of the hardest parts is finding it. It took me over a year to diagnose my family.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
this sounds like what happened to me at that age, minus a lot of doctor's visits. 1 pediatrician visit and they told me my stiff neck (and other symptoms which she didnt even consider) was from 'tension,' now however many years later in 21 with pain in almost every joint, a stiff neck from years straight, among many other symptoms struggling to either get a diagnosis other than 'vitamin d deficiency'... although ive been told that there is nothing wrong (other than that and 'stress' twice now)
i didn't/don't have such a caring parent, get your son to a doctor, it isnt 'stress.'
Posts: 8 | From Ohio | Registered: Feb 2010
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posted
He has Lyme and possible co-infections. Get his blood tested through IgenX, and make sure to test for co-infection. It's expensive, but you need to know whats all involved. Find an LLMD asap.
posted
As the saying goes -- Been there done that -- with my hubby.
The negative lyme test is meaningless -- not sure if that was an Elisa test or Western Blot test. Regardless -- the sicker a person is the less likely they will have a positive test.
A brain SPECT scan would be much more informative than a brain MRI. And even so -- the problem could be in the spinal column and not necessarily the brain.
The constant nausea and vomiting makes me suspect either babesia or bartonella -- these are 2 of the most common coinfections found with Lyme. It is more common to have multiple infections from a tickbite than to just have Lyme. And the different infections require somewhat different meds.
Don't waste any more time and money seeing specialists who do not believe in chronic Lyme disease. Only a LLMD can help you at this point.
And don't let the AMA type docs brainwash you. They are the ones with blinders on. I have had to fight for hubby's treatment so I know how difficult it is to deal with these know it all docs.
Keep looking for answers and keep on believing in your son. You know he is physically sick and that is where the focus needs to be.
He can get better, but it may realistically take 2 or 3 years. Just keep up your spirits and keep fighting.
As for the temporary paralysis -- hubby has had spells of something similar. He is not well yet, but he has resumed walking a mile or so daily for exercise.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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