NancyD

I believe my DD's autism (diagnosed at 24 mos) and PANDAS (initial onset at 29 mos) was Lyme-induced. You would never know now, at age 15, that she was ever on the autism spectrum and her PANDAS has been in remission for almost 1 1/2 years (the longer ever remission). Now if we can just eradicate the last two symptoms: anxiety and OCD. They are much more maneagable since beginning Bartonella treatment but still have a ways to go. Will test KPU this month and may have to switch back to Rifampin for a while.

During the first week we took Rifampin an hour before breakfast. Beginning in the second week we started taking a second dose an hour before dinner.

Both my DD and I got bad headaches in the first few weeks of taking Rifampin. Mine came in the afternoon and evening every day. After a few weeks they stopped. Now I never get them.

Sometimes it's difficult to separate out what is PANDAS vs. Lyme vs. Bartonella. And it may still be too soon to say but I think so. The tics and violent rages were definitely tied to PANDAS and they have been gone for a few years. Time will tell... One other thing I wanted to add that I forgot earlier. After the first HD IVIg DD gained tremendous ground with her social skills. She is no longer missing the subtle social cues she once used to miss.

Both my DD and I had hair fall out from Lyme and it subsided after a few months of treatment. We did increase B vitamins and added in biotin.

While it was rough in the beginning for several weeks Tindamax made a huge difference in both my treatment and my DD's treatment. Hang in there...it will get better!!

IVig worked very well for us in the beginning. Tics disappeared completely and never came back, even with subsequent exacerbations. Although violent rages and mood dysregulation disappeared for a year they came back with subsequent exacerbations. Lyme and co-infections prevented DD from healing completely. We had two year-long periods free of PANDAS exacerbations, however anxiety and OCD continued to get worse. That's what led us to test through IGeneX. I don't regret having done IVIg because it eliminated the tics altogether and gave us two good years.

We did it that way for my DD15. Started when she was a toddler. By the time we started her on abx for PANDAS we had already healed her gut (severe colitis) and did biofilm protocol and chelation. Lyme and Bartonella treatment did not start until Sept 2010.

I had chronic neck, shoulder, and back pain for years until I started treatment for Lyme. Have not had it in months.

My DD15 started getting red cheeks since starting treatment for Bartonella. At first it was often and worse after showers but now much more infrequently.

You can't take milk thistle with Rifampin. Although not nearly as good as the milk thistle I suggest curcumin. How about Epsom salt foot baths? Dry saunas are great for detox. I got a portable one online and it works great. Also, magnesium is good (but take at least 2 hours away from abx). And we take springreen detoxificant No 77 (made from bentonite clay).

Shaesmom, First, let me tell you how deeply saddened I was to read about your breast cancer. I cannot begin to fathom how you are dealing with everything already on your plate. My heart, thoughts, and prayers go out to you! I started on 300 mg Rifampin once daily in August and then went to twice daily one week later. I started herxing within 2 days really badly with headaches, sweats, fatigue, moodiness, and feeling like crap! My foot started hurting more, i had difficulty falling asleep at night, and I felt like I was going to jump out of my skin. I started feeling a better in about two weeks and continued so over the next few months. Other than occasional fatigue I am feeling great now! Of course everyone responds differently and with all you are dealing with your recovery may be slower. Epsom salts baths and saunas helped, and lots of naps! Wishing you a speedy recovery!!!

We have definitely seen an increase in symptoms during allergy season. A great supplement I highly recommend is Querciplex, which contains both quercetin and bromelain. My DD takes 3 capsules bid, which is about 1998 mg of quercetin. When combined, quercetin and bromelain will lower the histamine levels and suppress the inflammation of allergic reactions. I also take Querciplex and am no longer plagued with seasonal allergies. No longer have to take any OTC or prescribed meds for allergies.

Has he had any dyes or additives lately? I find during the Halloween season DD has more difficulty resisting candy at school. It's everywhere! Usually takes about a week to get out of her system -- really makes her more hyper, anxious, impulsive, moody, and OCDish. I always push more detox and ibuprofen during this time.

This is the part I worry most about as my DD approaches adulthood. Will she take her abx and supplements as needed to stay healthy? I second what Eileen suggests for all the same reasons. Dr. L would do a great job talking with her. She is very compassionate and has a great bedside manner. Another thought is to connect her with a person her age (perhaps on this forum?) who may be able to get through to her. Often, our kids will listen to anyone other than Mom! Also, have you ruled out Lyme, other co-infections, KPU, etc. that may be preventing her from staying in remission? Especially if she is in the medical field surrounded by people who are sick she needs to take protection with abx.

Yes, that is the dosage my DD15 is taking. She takes augmentin xr and doxy? I dont think my son took both at the same time. My llmd put him on augmentin xr when I told him that having to take all those pills before school was making him sick and he was getting sick by the time he got to school. With augmentin xr he only had to take the pill w dinner. Good luck with the augmentin xr. I was told the dosage is 1000mg 2x day. Sound right for a teenager?

Yes, she takes both Augmentin XR and Doxy and has no problem taking them on an empty stomach. Her monthly blood tests have been excellent and no problems with yeast or her gut. The only setback recently was due to her eating candy with dye and additives during Halloween. That automatically increased her impulsivity, mood dysregulation, anxiety, and OCD when it had been well under control. She takes augmentin xr and doxy? I dont think my son took both at the same time. My llmd put him on augmentin xr when I told him that having to take all those pills before school was making him sick and he was getting sick by the time he got to school. With augmentin xr he only had to take the pill w dinner. Good luck with the augmentin xr.

Yes, my DD takes Augmentin XR in addition to Doxy and pulsing Azyth/Tindamax. We tried taking her off it while treating Bart with Rifampin but her liver kept elevating. She's much better on the Augmentin XR.

Amy, I live north of Boston and have either been to or spoken with all the PANDAS literate doctors here in MA over the past decade. I am happy to share with you what I know and have experienced with those doctors and CHB. However, I recommend that you spare yourself years of heartache and frustration and go see Dr. B in CT or Dr L in Bethesda. We have seen both of them as well. In the end, you will be happy you did! Email me if you'd like to talk. Nancy

My DD15 had something similar last week. It was going around at school and had been well over a year since she was last sick. Anxiety and moods got worse but thankfully she bounced back. I don't think this was related to Lyme or Bartonella. It seemed more like PANDAS too. I think maybe strep in her sinuses. I did up her Transfer Factor, a great immune booster. And she's already on high doses of Querciplex. Susan, I hope your DD bounces back quickly!! And I hope you like the new doctor!

Both my daughter and I had night sweats before Lyme/Bartonella treatment.

Blood test. Our local hospital did it. How do you test for this?

Are the injections more effective than sublingual? I've been taking sublingual for several months now and I definitely notice I have more energy and even moods. Wondering if injections would be more effective. I know it's a tiny needle but I don't love the idea of doing it. Thinking of trying sublingual on DD. We tried an injection on her years ago but it seemed to activate her (make her more hyper/moody) at the time. Would love to try again maybe starting with sublingual.

I just posted this question on the PANDAS forum but has anyone here tested for deviations in the MTHFR gene? Ours showed a defect and DD has been taking 5MTHFR for a few months. Don't know if it's the 5MTHFR or the treatment for Bart but her anxiety/OCD is so manageable now!! We also tried participating in a study on cerebral folate but DD's blood was spoiled in transit and they couldn't use it.

Has anyone tested for a deviation in the MTHFR gene? Ours showed a deviation and DD has been taking 5MTHFR for a few months now. Don't know whether it's the new abx for Bartonella or 5MTHFR but her anxiety/OCD is so manageable now!! Now thinking of trying sublingual B12. We tried the shots years ago but they activated her.