NancyD

Yes, you can take GSE alongside abx. My DD takes GSE 3x daily alongside Augmentin XR, Azith, and Tindamax.

I would like to echo what SF Mom is saying. My DD has battled C-dif for the last few months. She was very depressed and threatened many times to kill herself. What has made a HUGE difference is Tindamax and grapefruit seed extract (GSE) in addition to her abx (Azith/Augmentin XR) and probiotics (Theralac and SBC). The die-off or herxing during the first two weeks was quite bad but each week it has gotten so much better. Now things are back to being calm and steady and she is feeling so much better. Also what has helped is reducing (eliminating if at all possible) carbs and sugar in the diet, as they feed on it.

Kenneth Bock, MD in Red Hook, NY

Lilly, we use Prothera D3 5000 IUs, however I did see other brands of 5000 and 10,000 IUs D3 at Whole Foods the other day.

We had a very different experience at OCDI. My DD16 found it to be incredibly helpful and supportive there. And she was allowed to get tested at a nearby lab. But, she was not there to be treated for her PANDAS/Lyme/Bartonella/MTHFR as she already has a doctor who does that. She was there to learn ERP and mindfulness so she could better manage the OCD while we are treating the underlying conditions. Her BT is EXCELLENT and while she may not fully understand her medical condition she is invaluable. We tried 2 other BTs outside of OCDI but found they were not nearly as experienced in ERP. We found that even though Dr. Jeneke does believe in PANDAS, the other staff had heard of it but pretty much dismissed it, at OCDI. I think 17 is the youngest they take there. Our experience was "OK" there, but not REALLY PANDAS friendly. My daughter had a bad sore throat while there and when I asked for a strep throat culture, they said no. She had a feminine infection and they refused to treat that either and forbid me to get it checked out either................

Jenike is not taking on any patients but you might call the OCD Institute at McLean (Jenike founded OCDI) to see if any behavioral therapists there are taking on new patients. The BTs there are REALLY EXCELLENT and some have private practice. They all do ERP and mindfulness techniques.

Agree about checking liver functions every few months. Very important. Also consider detoxing the liver -- daily milk thistle is excellent for this!! My DD takes it 3 times daily and it has allowed her to stay on Azith and other abx for years.

Bacterial conjunctivitis can be caused by strep. Exposure to any bacterial or viral infection can cause a child with PANS to flare.

Make sure you don't give B vitamins too close to bedtime as they can cause sleeplessness and nightmares. Have you tried Epsom salt baths before bed? They are very relaxing.

I'll PM you, Lilly.

Lilly, Yes, a DAN or integrative doctor can prescribe abx. You need to find one who has expertise in treating PANDAS/Lyme & co-infections. What part of the country do you live? I'm so happy to hear you are seeing such great progress!!

I believe recommended dosage for HEALTHY kids is 2000 IUs D3 each day. Higher for those with compromised immune systems. I would get a baseline and check labs every 4-6 months.

My DD was catastrophically low at 7. She has been on 10,000 IUs daily D3 for a few years now while we clear Lyme/Bart/MycoP. She did have herx-like reaction in the beginning but it did not last long. Her levels are now up over 60 and her PANDAS has been in remission for almost 3 years. I believe high D levels are key to her healing. My D levels were at 30 two years ago when I started my Lyme/Bart/MycoP treatment and i have been taking 5000 IUs D3 daily since then. They are now up over 60 and I am feeling great. Been off all abx for several months -- still on supps and eat very healthy (cut out carbs, sugar, dairy). My Lyme was acute so it was fairly easy to treat. DD was not so lucky. Hers is chronic - CD57 is still low at 20. We have to circle back to treating Bart, which as you know is more difficult to treat. When her D levels were low she got one bacterial/viral/yeast infection after another. Now she does not. Focus on getting those D levels up much higher. D is critical to healthy functioning of your immune system.

Thanks so much for your suggestions, HopeNY! I got your PM. Really appreciate it. I will pass this info on to her. Nancy

I have a friend who lives in MA and is looking for an LLMD or integrative MD experienced in treating TBIs and accepts insurance. NE is preferred but she will travel to NY, NJ, PA, MD, DE, VA and surrounding areas. Child has PANDAS/ASD and I'm sure Lyme/Bartonella. Have seen photos of her rashes on cheeks, bottom of feet, hips, and back of knees. The doctor MUST accept insurance. Any referrals would be greatly appreciated. Thanks! Nancy

I have a friend who lives in MA and is looking for an LLMD or integrative MD experienced in treating TBIs and accepts insurance. NE is preferred but she will travel to NY, NJ, PA, MD, DE, VA and surrounding areas. Child has PANDAS/ASD and I'm sure Lyme/Bartonella. Have seen photos of her rashes on cheeks, bottom of feet, hips, and back of knees. The doctor MUST accept insurance. Any referrals would be greatly appreciated. Thanks! Nancy

Check to make sure there are no dyes or additives in the C that might be causing this reaction. 500 mg of C is very low and shouldn't aggravate tics.

Best to stick with ibuprofen -- and NOT use Tylenol, as that lowers the glutathione levels.

Laura, for printed materials serif typefaces offer greater readability for body text while sans serif typefaces are used for legibility for headlines. The top serif typefaces for readability are Garamond and Times New Roman while the top sans serif typefaces are Ariel, Helvetica, Calibri, and Verdana.

I had the same experience with Doxy. Had to take it after my meal and that eliminated the nausea. I had extreme fatigue in the beginning. Support for the adrenals, B12, and adding in Tindamax ultimately helped fatigue.

ERP is how my DD stopped doing it.

Hi Colleen, That sounds like OCD. My daughter did that. Nancy

Picking is also part of OCD. My DD tries to substitute chewing gum or rubbing a worry stone so she doesn't pick her lip or fingers.

My DD16 takes 1000 mg querciten twice daily. And 3000 mg C in am and 2000 mg C in pm.

Both DD and I are very allergic to ragweed yet we have no problem whatsoever with milk thistle. We find it works exceedingly well for liver detox.