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Old 06-23-2011, 09:30 AM   #1
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shadowtails HB User
Is it common to get OCD from Lyme?

My DD is 11yrs old and has been diagnosed with Lyme & Erch after an Igenex test. The OCD seems to be her biggest challenge. She also has P.A.N.D.A.S.. She has been on Biaxin & Amox K Clav for for approx 2 1/2 and we have seen much improvement.
I'm wondering if OCD is the norm with Lyme, and honestly I think I'm just looking for hope here. Have you experienced OCD? Have ppl on here completely gotten rid of thier OCD?

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Old 06-23-2011, 11:35 AM   #2
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Re: Is it common to get OCD from Lyme?

Hi Shadow, I've seen references in the literature of OCD being a symptom in pediatric lyme and I have seen statements made that children have fully recovered from it. I'm not sure at all but have the impression this symptom is more common in children than adults. Experienced doctors have seen it and it's well-documented in the literature. There's certainly room for hope, I would think and antibx treatment is definitely worth a try. It's terribly difficult not being sure--but I think optimism is a very reasonable stance!

People mean different things by OCD. In the DSM, it's understood as intrusive thoughts, e.g., of harming oneself or others and a consequent set of "rituals" that are thought to to prevent the harm from occurring. But among laypeople, we often just mean compulsive or obsessive thoughts and/or behavior. I can say for sure I've had problems with rumination--same thoughts over and over again, all the while knowing intellectually that entertaining such thoughts, the constant re-hashing, is stupid, pointless and self-destructive--yet being unable to stop having them. I really do hope this a late lyme issue and that antibx treatment will put a stop to it!

Virginia Sherr has written about OCD in adults.

You might google "OCD" and "pediatric lyme" or "pediatric neuroborreliosis."

I wish you and your daughter the very best of luck. There's nothing funny about any of it but maybe allowing humor into the scene can help lighten the mood, you know? When I read Virginia Sherr's little case studies of two adults the one about the woman actually made me laugh. Again, if it's happening to you, or someone you love, nothing laughable about it--but somehow allowing some humor in makes it a little less scary and makes healing seem much more realistic, easier to imagine, and work toward in a constructive, self-caring way. Does that make sense?

Old 06-23-2011, 12:58 PM   #3
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Re: Is it common to get OCD from Lyme?

YES years ago I had it really bad. It has settled down the last 11 years doing treatment.

BUT something or someone gets me upset I am very obsessive in my thoughts.

I do not go out and buy buy buy anymore...

So if I lead a calm no stress life...I am okay...


Old 06-23-2011, 02:43 PM   #4
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shadowtails HB User
Re: Is it common to get OCD from Lyme?

Thanks you both for replying. She has extreem contamination issues and a bit of magical thinking, both which severly limit her activites. (our whole town including ppl are all contaminated). I know what you mean about the humor, my whole family does dark humor. It has carried has carried us far in the hardest of times. I forgot to add that she also does the tindamax twice a week.

Old 06-23-2011, 08:28 PM   #5
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Re: Is it common to get OCD from Lyme?

Hey Shadow, wow that must be incredibly hard for your daughter. I don't know what those meds are....but again, it's very much worth a try and hopefully, if the first ones don't work, her doc will try other ones. The neuroborreliosis literature is really very fascinating in its stories about people suffering from severe psychiatric illness and then recovering completely. And the illnesses often look just like the "real" thing--OCD, schizophrenia, etc. except often there are telltale physical symptoms too. Does your daughter complain of always being tired? Poor baby, the contamination fears alone would lead to exhaustion, I'm sure, just as my pointless rumination does.

Hmmmm, I've definitely chilled out on my compulsive shopping since starting treatment...never thought of that!

I used to go to a shrink for my chronic pain. Many believe that CBT (I'm having a lyme moment, can't remember what the "C" stands for, geewillikers!!!)--but therapy designed to self-alter your thoughts--can be very helpful. She specifically told me of a patient who had persistent fears that she would swallow tacks and harm herself. She was taught to inspect her thoughts and challenge them and set them on a better course. My therapist said she completely recovered. I know others, maybe even myself, sometimes, think this is like trying to put a bandaid on an amputation wound (ick, sorry, unpleasant metaphor!)......I think with these things, you sometimes want to hit it with everything you've got--meds, therapy and lots and lots of compassion (which it sounds like your family is doing--humor does NOT mean no compassion, right?). This type of therapy involves homework and practice and requires some discipline--it's not just going in and saying this sucks, that sucks, you know? I know adults with OCD and it's a battle. CBT might be worth considering as it truly does help some people get some distance and start to recover. It's probably helped me much more than I realize. Actually, I need to think about that! Maybe your daughter is already in this type of therapy? If so, she should maybe stick with it.

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