LymeNet Flash: Questions about son

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Posted by bunny1215 (Member # 4382) on :

My son has been diagnosed with Lyme, Babesiosis, and Erlichiosis. He has finished Babesia treatment, is currently being treated for Lyme and Erlichia. He has been on antibiotics for approximately a year.

Many of his physical symptoms have improved from these treatments, but his mental symptoms have not really improved at all. His worst problems are ADD and OCD.

He is failing in school. His teacher says he really has problems sustaining attention. Lately though he has been refusing to do work. I'm not sure if this has anything to do with Lyme or if it's just his personality because he has had Lyme since birth.

His LLMD is planning to put him on IV antibiotics. I'm not crazy about this idea. Has anyone had the mental symptoms go away with oral antibiotics only? Doesn't IV just force the bacteria into cysts? Would Bartonella cause the mental problems?

I guess I'm looking for someone with similar problems that had a positive outcome. I really thought some of the these problems would be resolved by now. I thought kids responded better than adults to treatment.

I haven't put my son on any psychiatric drugs because I was trying to avoid them. I am considering getting him medication for the OCD because it seems to be getting worse. Anyone have experience with treating kids for OCD? Did the medication help much?

Posted by lymie tony z (Member # 5130) on :

Isn't there any way you could talk to the educators and impress upon them that your son is ill??
My mental symptoms were definitely helped with IV ceftriaxone....I also was put on lexapro for my manic/depression ocd or bipolar symptoms and I seem to be doing better now...I don't know if I'll return to a mental state where I'll need IV again but it has happened in the past...
I don't know if orals work as well as IV's in this area but I seem to be doing well with Ketek....not cured but doing better...
I never had the coinfections so I'm assuming the mental aspects were just lyme...once the physical symptoms lighten up it is common for the mental symptoms to crop up...however they will subside with time also...you may well investigate an ssri but I never liked them either and it took me awhile to find one that helped and not made me feel worse... for a child it would be even harder to formulate...hope this helps a little....good luck........zman

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Posted by Lymetoo (Member # 743) on :

I think IV is OK, but I personally wouldn't do Rocephin. That's the one that causes alot of cysts to be formed. If you take it with flagyl, things might go well.

YES, bartonella causes mental problems....bigtime. I would definitely explore this possibility.

I don't know much about which meds are right for bart......someone will add that, I'm sure. [I think Cipro is one.]

I hope you find some answers soon. My cousin has Lyme and OCD. I'll see if I can find out which drug she uses for that. I think she has it under control.

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oops!
Lymetutu

Posted by bunny1215 (Member # 4382) on :

Thanks zman and Lymetoo. The school knows about my son's Lyme, but they don't really understand it. I believe they think he is ok because he can go to school most days, and aside from the dark circles under his eyes, he looks ok.

His doctor mentioned Ketek, but said we might have trouble getting it because it is not approved for people under 18 in the US. It's been used on kids for years in Europe, but they haven't tested it on kids here.

I have heard before about some of the psychiatric drugs not working with lyme. I don't want to cause my son more problems, but sometimes I wonder how he functions at school with OCD. I'm sure the constant obsessive thoughts must consume a lot of time when he should be paying attention or doing classwork.

His Bartonella test came up negative, but his Dr. thinks he may have it anyway. I would think that the way to go would be to treat Bartonella and see how that goes before going the IV route. The IV kind of scares me.

Posted by hyvue (Member # 7021) on :

[my daughter had cns lyme manifesting mostly w/severe behavioral problems and only some physical. When on antibiotics,whether iv or oral, ALL symptoms disappeared. Completely. (after herx of course). Spent a beautiful, wonderful, normal year on oral zithro mega, and she was completely symptom free. GOOD LUCK.