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  1. Hello I'm a 24 year old female from germany. I try to make it as short as possible, thanks for reading . I've always was a sick child but the first time I really realized I was getting more sick and sick every day was around age 11. By now I pretty much had every symptome related to pans/pandas. I had my first tic at age 3. I would start stretching my limbs into every possible direction and stare into nothingness for hours, I also had sudden movements. I can't remember but my mum can. It went away by itself. By age 6 I started to have severe anxiety. From that time on I was scared of everythi
  2. Hi All, It's been a few years since I've posted. DS11, who had a mycoplasma infection and many of the issues associated with it, has come out on the other side. He's just started middle school and is doing very well! Unfortunately, DS8 has just been diagnosed with Lyme. Our pediatrician prescribed 500mg of amoxicillin, 3 times daily. We just visited an infectious diseases pediatrician this afternoon. I presented him with two questions: Should we test for co-infections? Should we be using an intracellular antibiotic? I was surprised that he answered "no" to both qu
  3. Hello. We have 6 children with lyme and co-infections. 3 have PANS. I am seeking advice for our 16 yo ds. We think his PANS symptoms began around age 3 1/2 yo (positive bull's eye rash at 2 1/2 yo w/only an 8 day course of antibiotics.) His prrimary symptoms until his teens were OCD and learning issues. He was never formally diagnosed; we've put it all together within the last year after his sister had successfull treatment for an eating disorder with IV antibiotics. Fast forward to now, he has major rages and still can't learn. Super high anxiety and OCD in the need to cont
  4. Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
  5. Hello, all. I posted in this form about eight or so months ago searching for answers on how to treat my daughter's pandas. Since then, after a very long and hard journey, we have found out she has Neurolyme and multiple coinfections. It seems she regressing neurologically on a daily basis and the oral antibiotics aren't doing anything for her. She responded excellently to ceftriaxone in the past, so I am in desperate search for an LLMD willing to give it to her again. We have been seeing an LLMD for a few months now, but I found him to be dismissive and not willing to hear anything out. My dau
  6. our DD has been prescribed as part of her protocol either Trileptal or Lamictal - does anyone have experience good or bad? she has been diagnosed with Lyme . Our concerns are the side effects of those two. They are supposed to help with her nuero-irratabliity, nerve pain and extreme sound sensitivity because of the infection. We are considering using something like Lyrica - appreciate any feedback
  7. Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
  8. has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  9. Lông mày dựng ngược là có thai? Đây là quan niệm dân gian được lưu truyền từ xưa cho đến ngày hôm nay. Nếu như bạn hỏi qua bậc trưởng bối, chắc chắn đa số mọi người điều nghe qua hiện tượng này. Vậy đây là sự thật hay chỉ là những tin đồn thổi? Liệu rằng chị em phụ nữ khi xuất hiện lông mày dựng ngược là thật sự có thai? Cơ sở nào có thể chứng minh được điều này? Hãy cùng chúng tôi đi tìm câu trả lời qua các thông tin được cập nhật bên dưới, bạn nhé! Lông mày dựng ngược là có thai? Ngày xưa ấy, khi mà nền y tế chưa phát triển rầm rộ như hôm nay, ông bà ta thường theo dõi sự thay đổi t
  10. Hello all. My daughter is 17 and has been on every pysch med imaginable, CBT/ERP, you name it...I've discovered over the past few years her OCD is caused from infection in her brain and right now I am searching for a pyschiatrists or MD.. any DR really, who will be willing to consider using ceftriaxone to help treat her. She is miserable right now and OCD is preventing her from getting her physical conditions treated properly. Studies on OCD and ceftriaxone are remarkable and every time she has had some she has had significant symptom relief, only issue is finding a doctor who will listen. Any
  11. Hello - have you all heard of and considered Low Dose Immunotherapy (LDI) for your children. There is a very nice YouTube video of Dr Ty explaining the use of LDI for lyme/pandas. He is a very convincing speaker and we are going to talk to him. Wanted to know if you have any feedback for us.
  12. my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) we are in week 3 of treatment (we along with our provider suspected is was PANS)- daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC Our provider doesn't believe in steroids, so we are this course for now. We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions thanks
  13. dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) current daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, magnesium , NAC (1200mg) , probiotic, herbals - she has extreme sound sensitivity - looking for some good treatments (homeopathic & others) to give her some relief, any suggestions??
  14. Question - how long does it take to recover from PANS/PANDAS? I know every case is different, but just try to gauge where my dd is in her recovery . She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....
  15. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  16. 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
  17. DD6 had a major meltdown in school today that landed her with an in school suspension and the response to the stimulus was way out of proportion. This is on DAY 3 of 1st Grade!!! ...With LOTS of supports in place... I'm thinking that we may have to home school or hospital school or something. She's dealing with Lyme and Bartonella which I suspect was congenital but Idk. We've been treating Lyme since mid-January and she herxed horribly. Any thoughts? Any advice?
  18. I posted this on the Members Introduction page, and Chemar suggested reposting it here... Interesting forum, as you specify Lyme and PANDAS. Per repeated blood work over the last decade I have both from childhood. I'm a 45 year old man, permanently disabled (so they say for 14 years), and have been on a hard-core course for Lyme for the last year. Things are looking up. First, PANDAS: (Pediatric?) Diagosed with PANDAS (along with TLD, chronic encephalitis unknown type, Asperger's, CFIDS, and many merely-descriptive diagnoses - over the course of a year at about age 30). Ask my ps
  19. Hi everyone, Have any of you had a dramatic regression/increase in symptoms from starting Rifampin? To give context, I’m 22 and had untreated PANS for eight years. I got diagnosed at 19 in 2014, had two IVIG’s, a tonsillectomy, a year of steroids, and I went into complete remission by the end of 2015. I got Lyme in 2016 and relapsed, and I’ve since had another IVIG and have been treating Lyme and co-infections with an LLMD. I didn’t start Lyme treatment until December—nine months after the initial infection. I also tested positive for Babesia and Relapsing Fever. I was doing
  20. I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had
  21. Posting in case this hasn't been shared before: The Ruggiero-Klinghardt (RK) Protocol for the Diagnosis and Treatment of Chronic Conditions with Particular Focus on Lyme Disease Full online publication here.
  22. Someone on the site referred me to a Dr. Carolyn Walsh in Leesburg. I see she is on the Lyme board of loudoun county. Has anyone had experience with Lyme? If so what are her modalities ? Antibiotics, herbals,HBot, ? Not sure I can get in? Desperate! He is just laying there say after day till we can get an appt saying he doesn't feel good, if anyone knows of other Dr in va, Md. D.C. Besides Jemsek, Fletcher, Fishman, Mozayeni, please let me know thx!
  23. My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in his room. I discovered purple streaks on left side of body. He has had low testosterone and cortisol , not sure if it was from mold or Lyme. Went to infectious disease Dr. sand he said purple streaks are STRETCH marks ! He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick. What do you think
  24. My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in phis room. I discovered purple streaks on left side of body. He has had low testosterone and cortisol , not sure if it was from mold or Lyme. Went to infectious disease Dr. sand he said purple streaks are STRETCH marks ! He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick. What do you think
  25. Key Takeaways: What can we do to step up our EMF mitigation efforts? What works better for parasites; natural options or pharmaceutical ones? How can we detoxify aluminum and glyphosate? What role do viruses play in chronic illness? What is Dr. Klinghardt's approach to treating Lyme? What are SIBO and MCAS and how to approach treatment? What probiotic may help with SIBO? How do we get more energy and a better functioning brain? Is copper toxicity a common concern? What diet is best for people with Lyme? Is alkaline water a useful tool? What type of bee venom is best?
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