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maybaby

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maybaby last won the day on June 7 2017

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  1. I struggle with the Cunningham Panel test as well. After years of doing other blood work tests (strep, lyme, mico, etc.) and getting mixed results, I did the Cunningham Panel test for my DD (12) last year. She did come back elevated on the Anti-Tubulin and CAMK ranges, but nothing changed in her treatment approach with my PANDAS doctor (who is a psychiatrist who treats PANS/PANDAS). Since we don't really know the exact infection that caused the elevated ranges, we're still trying various supplements, antibiotics and herbs to tackle it. My PANDAS doctor has never indicated that certain ranges o
  2. I have found my 12 yr old daughter's executive functioning became worse on Prozac. She is currently only on 5 mg to help with OCD, anxiety, and restrictive eating (which have all been greatly helped by the Prozac). My doctor believes ADHD traits (poor executive functioning, impulsivity, mood changes) are a result of brain inflammation. Consider some vitamins/herbals to help with the remaining neuro-inflammation. We just started a new treatment- Synapsin. You need a prescription for it and have to order through a compounding pharmacy. After just one week, I've noticed marked improvement i
  3. My DD took this supplement for a year when she was 9 and weighed 50 lbs. She took 2 pills in the morning and 2 in the afternoon (you don't want to take it too late in the day b/c of all the b vitamins). I was told you had to treat yeast before taking it (can't remember exactly why...maybe because b vitamins can increase yeast)? It did seem to help her mood. I think we dropped it after a while because we wanted to try alternative treatments, and there are only so many pills she could swallow in a day. I don't believe you can open the capsule. It has to be swallowed.
  4. I was recently listening to some of the Autism One videos from last week's conference, and wanted to pass along the link for those interested. My DD has PANS/ADHD/Anxiety diagnoses. Although I don't have a autistic child, I feel a lot of the speakers at the yearly Austin One conference have important messages that can be applied to a variety of childhood disorders. You may want to listen to Dr. Rosario's Trifletti's video titled "Rosario Trifiletti - PANDAS/PANS as a framework for understanding vaccine reactions and autism" (the video is located under the Saturday list of seminar speakers).
  5. My DD had similar symptoms at that age. She was also severely constipated and was a very slow grower. We eventually figured out it was lyme causing these symptoms. My recommendation as a starting point it to work on toning down the inflammation in her body and getting the gut in a good place. I would cut out gluten and incorporate some good probiotics. I didn't completely cut out dairy b/c I needed to add some of that fat in her body (plus she was a very picky eater). I tried to give her as much protein, vegetables, and some fruit at every meal. The GAPS diet was too overwhelming for our f
  6. Thank you for your replies! I have read some of Dr. Phieffer and Yasko's works, but I will go back and dive deeper into them. LLM- I really appreciate your detailed reply. I'm going to research all of your suggestions and see what we can include in her daily protocol. My daughter has had restrictive eating problems and constipation since birth. She is very low on the weight/growth chart and some years wasn't even on the chart. The only thing that helped her to gain weight was BRAVO yogurt. Within the first two months, she gained 6 lbs and continued to put on another 14 lbs the following ni
  7. Every time I try to discuss methylation with my DD's LLMD, he tells me not to worry about it b/c treating her lyme is the big focus. My gut tells me that I need to consider and address her methylation results, especially as we continue to detox during her lyme treatment. My DD is constantly in an emotionally restless state (we never know when we're going to have a good or bad day). Her tics, rages, and ability to be and feel " calm and present" wax and wane with her medical treatment. Here are my concerns re: her 23 and me results: Detoxification: CPOX4- GT (1/2) CYP1A1- CT (1/2) CYPD2D
  8. I've done research myself on Band 41, as my DD only tested IGM: 31+, 39 IND, 41 IND and IGG: 41IND on the Igenix test. You are right that Band 41 indicates the presence of a flagella spirochete in your system, which can't be good! Based on my DD's Igenix result, I was skeptical that she had lyme, so I did further testing. So, I recommend further testing. We did the DNA Connextions Lyme Urine Test. You can order it directly and have the results sent to you. Their test is quite accurate, since they use a sensitive technique called PCR. It will test for lyme and some co-infections (babesia, b
  9. Dr R. refers to one of the Illinois doctors listed in the above posts. For lyme, he'll prescribe antibiotics and/or herbs (mainly Beyond Balance herbs).
  10. I forgot to mention that my post above is in response to Ryan's list of doctors.
  11. We saw Dr. K once. He does not treat lyme. We did not really click with him. My DD begged me not to take her back to him. We have seen Dr. R in Illinois for the past 4 years. He is fairly new to the world of PANS and lyme (started 2 years ago). He is an integrative psychiatrist who began treating patients with PANDAS/PANS/LYME/etc. after finding that a lot of his patients weren't getting better on traditional meds for anxiety, OCD, etc. He is great at researching the latest medical options and working hard to find the source of the problem. He is very responsive, and does do conference cal
  12. We're currently treating lyme for my daughter, so I can't speak to treatment for all PANS symptoms (there are much more knowledgable people on this board). However, my daughter's anxiety/irritability always get a lot worse with a loose tooth. When this happens, dosing Motrin in the morning and again before bedtime is the only thing that helps us. Also, my daughter's tics get worse on the start of any new antibiotic b/c she experiences a herx from the lyme bacteria die-off. If you want to test for lyme co-infections, I highly recommend the DNA Connexions test. This is the description on
  13. I can always tell when my daughter has a candida/yeast problem because she gets very silly/loud after she eats. Her stomach will also become distended and she'll have increased gas after meals. We've also done the stool test by Genova Labs. The OAT test is helpful diagnostic as well. Here is link that helped me to understand yeast symptoms: www.tacanow.org/family-resources/what-is-yeast-overgrowth/ When we see a yeast problem in her, I usually just treat with Nystatin (although we go through a whole herx reaction and have problems with increased silliness, lack of focus, and poor
  14. For the past year, we have been treating my 10 yr old daughter with just herbs (Beyond Balance products: Cognease Detox, Cyflacalm, MC-BB-2, MC-BAR-1, and MC-BFM-P) to treat lyme. I saw a big improvement in her neuro symptoms (7/10 in her overall behavior compared to the prior years). Her doctor convinced me to switch to antibiotics in order to fully "tackle the lyme" after her most recent lyme urine test. We started one month ago with 300 mg Cefdinir/daily and pulse 250 mg Flagyl on Friday/Saturday/Sunday for cyst busting. We try to detox with aka seltzer gold, lots of lemon water, and epsom
  15. I'm currently treating my 10 yr old daughter for Lyme only using Beyond Balance herbs. We are taking the "low and slow" treatment approach with her. I ran out of the herbs last week (Thursday) and re-administered them last night (Monday). She wet her bed in the middle of the night and woke up this morning full of rage. The bedwetting has not been a problem for us for a number of months (since we started the herbal lyme treatment four months ago). So, it now has me wondering...what is the connection to Lyme and the bladder? I went searching for an explanation this morning on the Internet, a
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