Treat lyme when symptoms are only OCD

[Christianmom]

I was curious if there is any mom out there whose child is being treated for lyme by a lyme doctor and the only symptoms are severe OCD (no tics, no joint pain, no stomach issues, no fatigue, overall good health). I know that a lot of lyme doctors treat lyme as a clinical diagnosis because it can be hard (and expense) to detect, but are they treating children whose only symptoms are OCD? Or do they require a positive IGENEX test before they will treat if OCD is the only symptom?

[MichaelTampa]

I have bought CD's of the last ILADS conference, meaning I have now had the chance to listen to a number of lyme docs speak on the topic. I would expect most lyme docs would take the OCD-only symptoms seriously, and would treat if they felt there was a good chance it was lyme, even if no other symptoms. But, I would expect most would do some kind of testing, IGeneX or otherwise, for lyme and some other possibilities, before making a decision on whether to treat and how to treat.

[KaraM]

I'm curious about this, too. We are waiting on results from IGenex. But physically, our daughter is very healthy as far as we can see. Other than a stomach bug and a couple of days with a low grade fever/headache/stomach ache last month, she has been very healthy. Until then, she hadn't missed a day of school this school year.

Unofrtunatley, OCD is very bad right now. It will be interesting to see the Igenex results...

[butterflymom]

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Edited February 2, 2016 by tampicc

[LNN]

My daughter has CamK 178, high antineuronal titers, but neg strep titers, no physical signs of strep. Her basic Igenex does not scream lyme - just ++41 and an IND 39. But she gets sudden and dramatic bouts of OCD and unexplained reflux and eating issues. Her immune complexes have tripled and went from 25 last spring to 94 two months ago (anything above 8 is high). She does an amazing turn around on antibiotics. So if I wanted to say she had Pandas, I could build a case. If I wanted to argue for lyme, I could. But no smoking gun in either camp. Just one miserable six year old.

 

Both our Pandas and our lyme doctor agree there's some chronic infection with a neuropsych response. She was doing fairly well on just zith but started to have blips. Our LLMD recently diagnosed her with bartonella and added bactrim last week. The first few days were rough, which in a perverse way makes me feel like it was the right thing. The last few days, she's been happier than I've seen her in months.

 

I don't know what she has, but I know things are better since adding the second abx that seems to work on bartonella- at least at the moment. So in our case, yes, an LLMD was willing to treat for a tick-borne illness with OCD as the only clear symptom (aside from GI issues). We did do a fair amount of blood work, and an endoscope with a regular GI doc early on, plus a poop test to look for GI culprits. So I don't want to give the impression it was a quick diagnosis. We spent months looking for things. We tried to be evidence-based, not knee-jerk. But I don't think an LLMD would dismiss the possibility of lyme based on OCD as the only obvious symptom.

[Wilma Jenks]

What did the endoscopy show?

[LNN]

What did the endoscopy show?

It showed signed of irritation in the esophagus, supporting the GERD and dyspepsia dx (DD was complaining of feeling like she was going to throw up first thing every morning and sometimes actually throwing up). She takes 20mg pepcid daily and it seems to keep the GERD in check most days, but it returns if we skip a dose. But the endoscope showed no ulcers, no other signs of irritation or abnormal results, biopsy was negative for celiacs.

 

Because lyme was not slam dunk, we spent a lot of time ruling other things out. That left us with "maybe lyme, maybe bartonella" so we started treatment for those and DD is in a very good place at the moment.