NancyD

I know it may be a little too soon to say anything but I have been off abx for 3 weeks now and so far I am feeling GREAT! I'm still on supplements but off Doxy, Tindamax, and Rifampin. Time will tell... My DD is also doing well. So much better than ever before. Too soon for her to go off abx but I'm pleased with her treatment. Right now our focus is on methylation and KPU. With the exception of anxiety and some obsessive tendencies most of her symptoms seem to be gone. Again, time will tell... So have hope!

If he has an underlying TBI he will herx. If you're adding another abx be sure he is getting enough probiotics. And check liver function regularly. May want to consider milk thistle if he's not already on it.

We went through something similar 5 years ago when my DD was in 5th grade. Of course, this was before we had any bullying laws. She was taunted almost daily by a few girls - one in particular. Both my DD and I spoke with the principal on numerous occasions but nothing was done. I sent email after email, but they fell on deaf ears. The teacher's solution was to bring the two girls together. My DD came home daily and cried. The rages from her PANDAS exacerbations turned violent. During Thanksgiving break she was so relieved to be away from school. Then Monday rolled around and she refused to go back to school. I tried everything but she held her ground. She felt she had given them more than enough chances to fix the situation but they didn't. Instead of forcing her to go back to such an emotionally volatile situation I supported her. I knew it was not going to get any better and it broke my heart to see how cruel the kids could be (and get away with it). I called an IEP meeting but they offered very little. Finally, as a temporary solution, I requested and received home tutoring. All they would give us was 2 hours at the end of the day. I took the two hours and told them my attorney would be in touch. Thankfully I worked at home so we were able to do this -- as difficult as it was. And thankfully she loved reading history and science books so we would take bi-weekly trips to B&N to load up on books. She learned more in the 6 months at home from reading all those books than she did in the previous 3 years at school. Although we had a 6-month battle I won an out-of-district placement to a fabulous private school. She has been there since 6th grade and will attend until she graduates from high school in 2 1/2 years. It's 45 minutes away but the district pays for her transportation, in addition to the school tuition. The class sizes in her new school are small, she has a great counselor, excellent teachers, wonderful electives, and great friends. She is happy there and is getting a great education. Pulling her out of public school was the best decision we ever made.

And seizures with TBIs. Did your son have seizures (or pseudo seizures?) you can have pseudo seizures with PANDAS or SC http://jnnp.bmj.com/content/75/6/914.full or even "real" seizures with SC http://www.ncbi.nlm.nih.gov/pubmed/655913

My DD was on Biaxin for Bartonella, in addition to Rifampin (and other abx for Lyme and PANDAS)and the Biaxin was REALLY hard on her GI system -- even with all the supplement support we were giving her. Ultimately we had to take her off it.

I second this. He's EXCELLENT! He has been treating my DD for many years. She has PANDAS/Lyme/Bartonella/methylation issues. He is also treating my Lyme/Bartonella.

We tried it for a few months a few years ago and it did not help at all with DD's OCD. When we tried taking her off it very slowly it triggered very severe motor and vocal tics. It took many months and a HD IVIg infusion to finally stop the tics.

Starting with good sleep and lots of water, B complex, vitamin C (best taken with bioflavanoids), magnesium, and essential fatty acids. You can also take Cordyceps, a Chinese mushroom used for supporting the adrenal gland. Or Pregnenolone, which is a precursor to many of the hormones produced by the adrenal glands. My DD and I take Adrenal Companion, which is an herbal remedy that contains extracts of cordyceps, rhodiola, and panax ginseng.

Kara, I'm so sorry to hear you also have Lyme! Both my daughter and I have been using Transfer Factor multi immune for many years and it is one supplement I can't be without. Once we were both diagnosed with Lyme we switched to LymPlus (DD also takes multi immune). LymPlus packs a huge punch so beware. You start off slowly with 1 capsule per day and then increase to two times per day after a week. You will feel like you have come down with the flu. That is normal. I felt really crappy for a few weeks. I could barely crawl out of bed so make sure you have some help with the kids. I was lucky that my DD could fix her own meals and get herself off to school. I also started my LymPlus first and made sure I felt better before I started her on it. I was on Doxy and Tindamax for a little over a year and Rifampin for Bartonella for about 6 months and now I am off all abx and feeling really great. I am still taking LymPlus and will check with our doctor next week to see if he wants me to stay on it or switch back to the multi immune. I was lucky that I did not have any yeast problems but I did take high doses of probiotics. I found that epsom salts baths and saunas really helped during this time. Be sure to support your adrenals and check your thyroid as your treat. And of course check liver monthly. Feel better! Nancy

I used to get them daily but since I started taking 2 drops of vitamin K each day I haven't had a bloody nose since.

I definitely think this is another piece of the phenotype. As we have treated DD's PANDAS/Lyme/Bartonella/MycoP her auditory processing has gotten so much better and she does not speak as loudly as she used to. Her hearing has always been fine...it's the central auditory processing that was (hopefully temporarily) damaged.

Yes, my DD takes both Augmentin XR and Azyth. She pulses Azyth with Tindamax (3 days per week bid Tindamax and 4 days per week bid Azyth). She was also on Doxy but we recently stopped that.

Have you had their central auditory processing tested? You can do that beginning at (i believe) age 7...My DD has the same issue and it's due to deficits in central auditory processing. I believe that TBI infections can cause these problems...perhaps PANDAS and other infections can too. When DD was tested the audiologist gave me a headset to let me hear what conversations sounded like to her -- particularly in large groups or with lots of ambient noise. I was amazed at how muffled everything sounded to her. Almost like she was under water. Over the years we have learned how to compensate for her auditory processing issues -- she had relatively no auditory processing in one ear and very little in the other ear. We made sure she was seated with her best ear to the teacher and the teacher had to have a headset with a speaker box installed on the ceiling. Since we have been treating DD for PANDAS/Lyme/Bartonella I have to say that her auditory processing is greatly improved. She no longer requires any of these accommodations.

For many years we tried different probiotics and they all made DD worse (really activated her and we could not seem to push through it). So we kept her on Bifido Factor, which I believe is a prebiotic for babies. Then last year we tried Theralac --after many on the PANDAS forum recommended it -- and DD did really well with it so she's been taking it ever since. Now I take it too.

I "thought" my DD was clear cut PANS -- Augmentin XR and IVIg put her into remission with all of her symptoms (EXCEPT for anxiety/OCD) for up to a year at a time. But the anxiety/OCD continued to get worse. And then there some new symptoms that did not quite fit PANS that I was overlooking. Within months after she was diagnosed with Lyme and we started treatment all of the new symptoms disappeared, but not the anxiety/OCD. Then we discovered she had Bartonella (not from the co-infection panel though as that came out negative).Bartonella treatment helped a bit but her anxiety/OCD was still a big problem so we tested MTHFR gene, zinc levels, and KPU. She did have a deviant MTHFR gene and we put her on methylfolate. Helped a bit. Then zinc levels were low and even before KPU test came back we added in zinc and that seems to be really helping her anxiety/OCD. I'm still waiting for the KPU test results but I am guessing she has KPU. Last month she did have elevated strep titers, though this time she did not go into an exacerbation. So we are making great progress! If it were me, I would keep testing while things are going well so you have a clear plan of what to do next, particularly if/when things go downhill. I always like to have a backup plan in my pocket.

Yes, that's him. My DD is one of the case studies in his book. He's really TERRIFIC...my absolute favorite doctor!!!

I have a good pedi up north who understands PANDAS. He prescribes abx and also wrote letters of support for IVIg for DD. For a specialist we have been to most Boston-area MDs -- frankly, you're much better off seeing Dr. B In CT. We have been to both Dr. B and Dr. L. We have also been seeing a GREAT DAN doctor in upstate NY for over 8 years (Ken Bock). He's treating DD's PANDAS/Lyme/Bartonella and also my Lyme/Bartonella. If we have to do an outside lab our pedi orders it so insurance will cover it. Feel free to pm me for more specifics.

DD had joint problems (particularly with her knee), but PANDAS treatment did nothing to reduce the symptoms. Then she was diagnosed with Lyme disease and within a few months of starting Lyme treatment her joint pains disappeared.

Our DAN doctor ordered the MTHFR genetic test but it can be ordered by your pediatrician. It's a simple blood test. We did ours at the local community hospital lab.

Acetaminophen (Tylenol) lowers your Glutathione levels. Glutathione is a master antioxidant and one of the most important lines of defense you have against diseases, toxins, viruses, pollutants, radiation, and oxidative stress.

The problem with Deplin is that it does NOT come dye free and you can't get it compounded. My DD takes 5-MTHF (L-Methylfolate), 10 mg.

Although very simple, this is how I taught my DD how to swallow her pills 11 years ago: put the pill in your mouth, take a big drink of water, and then I said "look up at the sky!" Somehow it worked and from that moment on she could swallow her pills.

Sounds like herxing to me. Tindamax made a HUGE difference for us. Lots of herxing initially for several weeks and then big improvement, but it did hit us like a ton of bricks. DD was extremely moody and angry and she raged quite a bit. Even threatened to kill me. Her anxiety also got worse. BUT, we started off with Tindamax daily for 3 weeks and it was just too much for her so we decided to pulse it 3 days a week with Azith. That was much better and SOMEHOW we managed to work through it. Then about a month and a half later she was calm, sweet, caring, no moodiness, and much less anxious. For me, Tindamax made me moody but it hit me more with fatigue and joint pain. After a fee weeks of taking it 3 times a week i started feeling better. Long Epsom salts baths and saunas really helped as well as bentonite clay and charcoal. I just went off Tindamax after being on it for almost a year and I'm feeling really great. DD may go off it soon after being on it for 15 months.

Susan, if you bought the ThermaCare pad for the back you could wrap it around the knee. That one has Velcro. You might have to cut a slit through one side and pull the other side through so you can wrap it. Also, whenever my DD's knee bothers her she wears a knee brace we bought at the drug store. That gives her good support, especially when she rides or has gym.

Whenever my joints hurt I find heat works best for me so I love the sauna. And when it's really bad I use a ThermaCare pad round the clock. Love my ThermaCare pads! I hope your DD feels better soon, Susan! Nancy