PANS/Lyme or both?

[RachelE]

It has been such a long road. I am so exhausted from trying to help my dd (11).

 

She began symptoms of ocd around age 6 with obsessive urination (6x per half hour), eye tic. The urination thing would only happen periodically - it either happened, or it didn't. She would have no sign of it for some time, then it would reappear for a few weeks. First round of pneumonia occured prior to this, along with several tick bites (we lived in a tick-infested area of New England).

 

Fast forward to age 8 or so and she suddenly was incapacitated by intrusive thoughts (ocd). The urination obsession started up. Lots of emotional lability, highs and lows. Truly incapacitated by the ocd thoughts - she worried constantly about the harm or wrong she might do/had done. We found a PANS doc off pandasnetwork.org and after tests we found she had apparently lyme (probably for some time as the results were somewhat equivocal and probably lowered due to abx over the years.) as well as mono. By now she'd also had pneumonia a second time.

 

Six months of abx and the intrusive thoughts disappeared. No sign of tics. We were left only with mild anxiety/manageable remnants of ocd such as a tendency to worry about hygiene issues. This past fall after being dx'd with respiratory resistant staph (along with her sibling, who also had strep) and then another round of mono, the intrusive thoughts came racing back. Constantly coming to mom with worries and obsessive thoughts of harm, violence, sex -related issues. None of our CBT training seems to help. Previous doc. put her on a week of clindamycin, plus a week of prednisone, and luvox. Nothing helped and we took her off luvox. Now at a loss. Have multiple appointments and agonizing over how to help. Can't help but feel her underlying infections/immune issues underly her psychiatric issues. Am I crazy? PS we desperately need LLMD/Pans knowledgeable providers in D.C. Northern VA area. Latimer is booked out for months.

 

[nicklemama]

My son has PANS/lyme. How long did you treat the lyme disease? It sounds like it was not eradicated. I think you need to see an LLMD and test for coinfections and resume lyme treatment if you are no longer treating for lyme. Lyme treatment has significantly helped my son but its a long road of treatment. 30 days of abx for lyme is not going to cut it.

[rowingmom]

In DD14's case bartonella/babesia were the cause of her PANS symptoms. All have resolved.

 

Keep investigating infections; you have seen her symptoms resolve with treatment. You will find the answer.

Edited March 17, 2016 by rowingmom

[sf_mom]

All three of our children have gestational Lyme and are living normal lives. It was/is a long road to recovery when Lyme and co-infections are involved. We are in our 6th year of treatment.

 

Our older son was initially diagnosed with PANDAS at the age of 5 1/2 years old and was treated for one year fairly successfully with PANDAS protocol. At the one year mark he seemed to be declining and had blood in his stool so we were forced to look beyond strep and found Lyme and co-infections. He just turned 12 and he is still being treated. He has no anxiety, no OCD, no rage, no mood issues, no depression..... none of the typical PANS symptoms for several years now. He still has a few symptoms that are non-dectable to average person, are more traditional Lyme symptoms and why we continue to treat.

 

Not long ago we started pulsing Ivermectin one day a week at high doses with our 12 year old DS. Ivermectin treats parasites and Bartonella well. Within 48 hours of initial dose a classic Bartonella rash appeared on his back. Unfortunately, it is a rash I have seen often with rotation of protocols for all of our children.

 

Our younger son just started the same protocol as his older brother 10 days ago. Also after 48 hours of starting Ivermectin he came downstairs from showering and asked me if it was right to have all these scratches all over his body. It looked like a cat had scratched him in several locations. It was also the same rash that appeared on older DS. After a second pulse of Ivermectin he had a 45 minute rage later in the day. The rage came on suddenly and stopped suddenly.... he could not quantify to me why it had happened. This particular child had not had a rage in years. In the Lyme world rages are often associated with Bartonella and what we were treating.

 

The only reason why I mention our story is for perspective on how long it can truly take to treat TBI chronic infections. Even after 5 - 6 years of treatment we have real physical indications the infections are still there in more than one child.