Both my boys have congenital lyme. They are 11 and 14 and were not diagnosed until last year.
My oldest is 14 and when he was younger he was just the happiest kid ever! Very funny and loving too. Then he went into middle school and it started to change. He started to hide in his room more.
I thought it was because his brother has Aspergers (a form of autism) and my husband would yell a lot because he didn't know how to deal with my son whom wasn't diagnosed yet with Aspergers yet.
I tried to talk to him but he would just say nothing is wrong and he liked to be alone. I tried to let him be as much as I could but it worried me often.
As time went on he got more and more withdrawn and then started to get tired all the time and depressed like. He would either be in school or sleeping or in his room and occasionally he'd have a friend over. But I usually had to push the friend thing.
Now in high school he has friends over more often but he is still very withdrawn and keeps things to himself. I am very worried that this is not normal teenage like behavior. And it is getting worse as time goes on so I don't think it's puberty anymore.
He spends all his time at home in his room. He only talks to me when he wants something. When I ask him questions he answers with "yeah or ok" and that's about it. He looks down all the time and has a blank look on his face. Never really smiling.
I pray it's just the lyme! But I am very worried it could be something more. I wonder if I should I look into therapy for him? I don't know if he'd go or talk to anyone.
It's breaking my heart to see him like this!! I mean it is literally killing me inside
He was once my little buddy and now I feel so helpless! I am so worried if I don't address this soon it will only get worse.
Luckily he doesn't get in trouble and otherwise is a good kid. He is very smart and gets good grades.
He is just like a blank slate with no emotion at all. He doesn't wish anyone a Happy Birthday when it's our birthdays. I often feel as if he just hates us all.
I know there are psychiatric symptoms with lyme and I have read about them many times. But can someone please tell me what you think of this? Has anyone else had this experience with their lyme kids?
Thanks so much for listening!! Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Amy, it sounds like your son may need some help.
Not wanting to talk with you is not abnormal. Hiding out in his room is probably OK too. BUT the lack of emotion and decreased desire to socialize with his peers is not normal. It sounds like he may be experiencing some depression.
He may just need someone neutral to talk with. Maybe he's having trouble dealing with the stresses of life, lyme, school, peers, normal changes. Some kids have a harder time learning how to express themselves and how to process things.
If I were you, I would look for a child psychologist or psychiatrist that specializes in adolescents.
You clearly want the best for your son. It would be better to try to help him now while he's younger than to wait to see if more problems start to arise. You want him to enjoy life, to do well in school and the activities of his choice, to be able to socialize, and feel OK in his own skin.
Your son may be embarrassed or upset at first when you recommend the counseling. But it is for his best. You can reassure him that you are trying to help him feel better. Everyone needs someone to talk with.
Good luck Amy
PS: I don't have kids of my own but I've worked with alot. I've seen the dramatic difference that can be made with good psych care.
Posts: 5237 | From here | Registered: Nov 2007
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Has he been tested and on a treatment for lyme disease? I feel so bad when I read about this as my daughter has lyme and her behavior has been not normal at all and we could not get her to take her antibiotics. She does not live with us anymore and is making bad choices. This site explains more about their behavior.
This age is never easy, and I imagine especially when lyme is involved.
It could be a "normal" teenage phase. I know my oldest became very withdrawn and difficult to deal with. We saw a therapist for a while and it did help.
Then again, it could be depression or something more serious, like someone else mentioned.
With that being said, I think therapy is a very good idea. It can't be healthy for your son to be keeping everything in and isolating himself.
Therapy may get the ball rolling and help him to come out of his shell a bit and maybe communicate with you and the rest of the family more.
Posts: 423 | From Upstate NY | Registered: May 2009
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map1131
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-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Amy,
Please consider the parasite/worm co-infections of Lyme.
They can cause personality changes. Please check the symptom list at Humaworm and I think you might see some of these symptoms. PLEASE don't ignore this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
He could be experiencing anhedonia.
Depression is serious and can lead to death.
Counseling or medication can help. If he's willing to take supplements, fish oil and magnesium can help.
posted
Amy, Be sure your son is under the care of an ILADS certified LLMD and perhaps finding a Lyme literate therapist will help. Sooo important the therapist you use is lyme literate:)
Your Mommy radar is probably right and you must listen to it. Can't imagine teen hormones and the affects of this disease!
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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posted
Dear Amy - so sorry - i know how hard this can be as a parent - i have 3 teens all infected
it sounds like your sons are both being txd
are you going to a llmd??
have the boys been tested for coinfections?
we have had a similar experience. i am not a dr and not telling you what to do just sharing our experience
when our older one acted very much like your son, we suspected a co infection. for her - a clinical dx of bartonella was made and she is a different person now that she is txing lyme and bart.
2 of my children i am sure were born with this - both became extremely ill when they hit puberty
not unusual....this is a horrid illness for children but especially teens
sending you best wishes
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Thank you everyone! Sorry I thought I responded to this awhile ago but not sure what happened.
Yes he has lyme and is being treated by a good LLMD. We are actually treating him for Bartonella and most of his symptoms seem to be related to that infection. He also has leg weakness as one of his main symptoms and fatigue.
I really hope his mood improves with treatment but I am unsure. I am looking into therapy for him though.
njlymemom, what meds worked best for your daughters bart treatment? how long did it take for her mood to improve? I think both of mine were born with it too. Possibly bitten in summer of 08 in Cape May on vacation too. They have both had symptoms before but after that vacation is when things went down hill fast!
Thanks everyone for your support! I haven't been on much until lately. It's been crazy around here. My youngest isn't sleeping at night so I am trying to home school him. I have lyme also so it's been really hard.
Take care! Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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I also homeschool my 3 kids with lyme and its only by God's grace I do it.
My 11 yo has had withdrawn issues all his life and just now looking into a neutral, lyme friendly, homeschool friendly professional to help him.
I had lyme as a child and its really hard when you realize you are "different" than everyone else. Then you get into your thirties and look back on the difficulties you endured and have to deal with the thoughts of "being robbed of your childhood".
Be careful of professionals who only want to medicate and label him.
Make everyday life as normal as you can and encourage the gifts and talents they have. This will go a long way.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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I think that described me in High school and although I never admited it at the time I was VERY ANGRY at my parents. I had never felt well and everytime I brought it up it was dismissed or I was blamed for it, if my stomach hurt I must have eaten too much, If i felt anxious I was being childish, tired lazy. Almost all parents do this but in my case something was wrong and withdrawing brought my nerves down in a way to deal with it. As i got older they pushed more and treated me like I was depressed and told me and others I was making excuses if I depressed. I wasn't depressed I felt sick and nervous, didn't have teh words and was coping. The more they pushed the more I was pushed beyond what I could handle. I would try to listen. Not tell them or push them on what they should or shouldnt be doing based on how you feel on the situation and if they are open to it find someone neutral to let them talk to.
Posts: 23 | From mass | Registered: Aug 2007
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