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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 everything, I wouldn't go anywhere without my mum. In school I was so scared I started sweating as if I was taking a shower. By age 11 I started having severe sinus problems and I would get sick every 6 weeks, but I never had fever. I would get aggressive easily and was extremely moody, I also had severe gut problems Age 14: I started to faint randomly - in the bus, at school, In the subway, night sweats started, every night for 2 years. I had problems with my handwriting, it was becoming so bad my teacher couldn't read it. Age 16: I woke up one saturday and was dizzy and this is where the worst part started. I stayed dizzy for 2 years. I had severe migraines, it felt as if my head was exploding, my coordination was gone, I had extrem light sensitivity too. At 18 it went down to extrem pain in the neck and confusion.Because no doctor diagnosed me except with allergies to milk, egg etc. I started a raw food diet and went back to school to get my a level. At 20 I had a half year of no symptoms I finished my a-level and then suddenly the gut started again, I couldn't eat anything (2016), I had constant constipation or diarrhea I lost 7 kg and was so intoxicated I smelled from every pore when I entered a room, I had to get infusions from a doctor to get the poison out of me. 1 year later I started having auditory hallucinations (now for 2 years) . Also 4 months ago the tics started again. Since 2016 the sinus problems are back, I have nerve pain, my knee joints hurt after taking a shower, sometimes my skin burns and a lot of other symptoms. I will now start getting tested for infections. We start with lyme disease because I remember having a tick at 14, 2 months before I fainted for the first time. I have absolutely no clue what else I have to test for. It's also really hard to find a doctor that knows about pandas in Germany. So basically what I'm asking for is what should I get tested. I read a lot about co-infections, Lyme tests that aren't accurate, encephalitis, something about MTHFR gene and pandas but I don't know what to look for. I'm really confused and my mum (who loves me but...) is really bad at research doesn't know what to do. Until now we tested : -I had a spinal tab (they tested for encephalitis) - negative -MRI-negative -I had an autoimmune blood test - myelin antibodies positive + -They tried neuroleptics - didn't work, then they said they don't think I have schizophrenia -I had an eeg - they found slow waves and put me on keppra against seizures that I didn't have back then. + -I had a gastroscopy and colonoscopy - negative. I'm still waiting for the blood work they tested for gluten sensitivity. -2016 I went to a naturopath he tested me and told me my body couldn't process meat protein anymore. Also he diagnosed me with an illness not accepted by mainstream medicine called pyroluria. But he managed to get my stomach back to working, sometimes it was rock hard even after just eating a cucumber. He also said I don't have leaky gut (also not mainstream medicine) + I'm no expert I don't know where to start because my mum and me realized that doing the standart tests won't work. I'm reaching out for those mums that got their children tested and did their own research. Please help me to figure this out because my mum doesn't even know what a forum/board is and I'm at my limit and really scared. Also sorry for my bad english. Thank you very much. I would be so grateful if you could help. Zanzarah.

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 questions. He simply said the co-infection Babesia would have resulted in a terrible fever and headache and that would have been the end of it. As for an intracellular antibiotic, he looked at me quizzically and said, "Lyme is easy to kill.... You've been reading the wrong stuff." I may be a bit rusty, but I still believe next steps should involve finding an LLMD and addressing the two above issues. Any guidance / suggestions will be greatly appreciated. Thanks!

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 control everything in his life. He does not have relationships with anyone outside of our house and his siblings do not enjoy being around him as he is very abrasive. After one year of antibiotics, physical symptoms have improved with no shift in psychiatric symptoms. Our doctor has recommended brain mapping/neuro feedback and we are going to pursue that. In the meantime, I would like to figure out how we can start the process to be approved for plasmapheresis, realizing that this is a long shot. Does anyone have any advice? We are in Colorado and if anyone knows of a clinic or doctor that we consult with, that would be appreciated, too. Also...the Cunningham panel. Has anyone had a positive after 10+ years of illness? And, is it possible to get our son back after so much time spent in this illness? Amy

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.

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 daughter is about to turn 18 and half of her time is spent doing compulsions, the other half she is spacing out, sometimes so bad she can't remember her own name. She is not going to be able to tolerate oral abx until her head is cleared up a little and pyschotropic medicines have an extremely negative effect on her. I am willing to travel overseas if it means getting her the proper Lyme treatment, I just need some recommendations please. I'm aware forms don't allow LLMDs information to be posted, so if anyone could email or personal message me some it would mean a great deal. Please. I am desperate

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

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!

has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much

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 trên người để nhận biết tình trạng sức khỏe cũng như việc có mang bầu hay không. Ngoài trừ để ý "ngày đèn đỏ" đến muộn, họ còn quan sát được khi lông mày có dấu hiện dựng ngược, thậm chí là tóc mai, tóc gáy cũng dựng lên thì chắc chắn người phụ nữ đã mang bầu. Tỷ lệ chính xác có thể lên đến 99%. Đây là quan niệm cũ xưa hầu như ba mẹ nào cũng biết, hoặc ít nhất họ đã từng nghe qua một lần. Xem thêm: phun thêu lông mày ngọc dung Hiện nay có khá nhiều phương pháp xác minh bạn có thực sự có thai hay không. Nếu như muốn đảm bảo tính chính xác, tốt nhất là nên mua que thử thai để xem có hai vạch hay không? Hay bạn cũng có thể đến bệnh viện phụ sản thăm khám để biết được tình trạng sức khỏe của mẹ và bé. Thay vì phân vân chuyện lông mày dựng ngược có thai là thật hay giả thì tốt nhất là nên áp dụng một trong những giải pháp hiện đại ở trên. Cơ sở nào chứng minh lông mày dựng ngược là có thai? Câu chuyện lông mày mà dựng ngược thì có thai được truyền lưu rộng rãi trong dân gian hơn trăm năm. Chỉ bấy nhiêu thôi cũng đủ chứng minh xác suất sự thật là rất cao. Nếu như một ngày đẹp trời nào đó bạn chợt phát hiện lông mày có hiện tượng dựng ngược trên gương mặt, kèm theo một số thay đổi sinh lý như đi tiểu nhiều lần và liên tục trong một ngày, cảm giác buồn ngủ, chóng mặt, dễ nôn mửa khi nghe thấy mùi tanh, mùi lạ thì bạn nên dùng mua que thử thai. Biết đâu bạn mang thai thật thì sao? Phải biết rằng thời gian đầu mang thai rất nguy hiểm, dễ sinh non nên bậc cha mẹ cần phải cẩn thận hơn. Xem thêm: Khám phá địa chỉ phun thêu chân mày đẹp nấc tiếng cả nước Một số trường hợp lông mày dựng ngược chưa hẳn là có thai. Chẳng hạn như một số bạn gái từ khi sinh ra bẩm sinh chân mày đã dựng ngược sang một bên. Tất nhiên, trường hợp này rất hiếm, tỉ lệ chị em có đôi lông mày như thế này không nhiều. Nói tóm lại, chân mày dựng ngược là mang thai thuộc về quan niệm dân gian. Hiện nay vẫn chưa có cơ sở khoa học nào có thể chứng minh được. Vậy nên, lời khuyên chân thành dành cho bạn là khi phát hiện lông mày dựng ngược là nên đi khám thử để đảm bảo việc mình mang thai có thật hay không. Chia sẻ câu chuyện vui về lông mày dựng ngược. Hồng Ngọc, dân Đà Nẵng tâm sự: "Kết hôn hơn 3 năm mà chưa có mụn con nào, mình và chồng lo lắng lắm. Cả hai đi khám nhưng không phát hiện bệnh gì. Mẹ chồng mình thì hối thúc mãi, suốt ngày cho mình và chồng uống thuốc bổ. Thời gian dài, đâm ra cả hai cảm thấy áp lực, đôi lúc còn xảy ra tranh cãi. Chồng mình quyết định cả hai dọn ở riêng một thời gian để giảm bớt áp lực từ phía mẹ chồng. Hơn nửa năm sau đó, có một ngày mình phát hiện lông mày dựng ngược cả lên. Không chỉ vậy, tóc mai, tóc gáy cũng dựng ngược, nhìn quái lạ vô cùng. Mình sợ bản thân bị bệnh lạ nên dấu chồng đi khám thử. Bác sĩ khám qua và hỏi mình một số hiện tượng sau đó bảo mình qua khoa phụ sản xem sao. Mình lo lắm, nghĩ bản thân chắc bệnh nặng lắm cơ, lúc đó chồng mình lại gọi điện thoại. Tâm trạng lúc ấy vừa buồn vừa tủi thân, thế là ôm điện thoại khóc hu hu. Chồng mình hoảng sợ, chạy ngay đến bệnh viện, cả hai đi và khoa phụ sản khám thì phát hiện mình mang thai 2 tháng. Hai vợ chồng vừa mừng vừa sợ, còn mình cảm thấy mất mặt vô cùng. Vụ lông mày dựng ngược báo hiệu mang thai gì đó, từ trước đến giờ mình chưa nghe nói qua nên không biết, ai ngờ lại xảy ra trường hợp dở khóc dở cười này. Nguồn: https://github.com/thaiphong92/phunxam/wiki/Địa-chỉ-phun-thêu-lông-mày-ở-đâu-đẹp-nhất-cả-nước

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 response appreciated. You can personal message me on here or email as I've heard you can't post names of doctors in forums.

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.

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

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??

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....

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!

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 salt baths. The first twelve days, my daughter severely herxed and could hardly hold a conversation, sit down, sleep, or eat. Things have *slightly* gotten better, but she still has bad anxiety, cries easily, low appetite, poor focus, and a general feeling of restlessness. We're supposed to start the 3rd antibiotic next week (Azith), but I know her body can't handle it just yet. I'm also still giving her all of the Beyond Balance herbs. So, how long in your antibiotic lyme treatment did you see your child's symptoms improve? I am at the emotional point where I want to just drop the antibiotics and go back to herbs. Or, maybe try a different herbal protocol. So, I'm looking for any guidance/success stories in sticking with antibiotic treatment. Her doctor says 3-4 months is the usual protocol, but I've read you need to stay on antibiotics for two whole months after all symptoms have resolved. Thanks in advance for any input ;-)

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?

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 psychiatrist, he'll tell you I have all of them. Ask another doctor, he'll say he only knows about Lyme. Ask another, I have hormone imbalances, and acknowlege auto-immune problems. Ask many other doctors, they'll say there's nothing wrong with me at all and to go see a psychiatrist - which of course is the first doctor that will tell you I have all of those conditions. Second, Lyme: First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it. The "University Doctors" at the same university that did studies that show significant residual effects after Lyme, didn't acknowledge residual effects as being valid until confirmed by the CDC. Ironically that was only about a month after their researchers published findings on mice, a couple years ago. It was suggested elsewhere that I probably have "post-Lyme" and was actually infected when I was a child - which is extremely likely considering where I was living, which also has additional tick-borne infections, only other one I show is that I had (thus IgG not IgM) Ehrlichia Chaffeensis, tested a year apart. So, if I'm so messed up, how is it that I'm writing this (seems to me) lucid message? How was I an honors student in college? Symptomatically, I have a hard time expressing myself here. Severe anxiety and sleep issues, which only after more than a decade was I allowed to switch to diazepam. I had asthma all my life, which suddenly disappeared at the exact same time as a severely dibilitating bout which left me bedridden for months, only later learning that my thyroid blew out (called Hashimoto's) and my hormones (thyroid, androgenic, increased estrogen) went completely out of whack and a lump grew at my left elbow. All that cannot be coincidence, but no doctor seems willing to put them together. Epileptic response to light (flashing, certain patterns, sudden changes) that merely render me useless (called Temporal Lobe Dysrhythmia) for quite some time. Visual disturbances after originally having 20/20 sight. Glasses can reduce eyestrain (especially prescription dark sunglasses) but the adjustment they make is very slight, yet I need reading glasses to follow text on paper, especially high contrast paper (laser printed black text on high quality white paper is impossible to even look at, there have been times where I must read such a document so copy it to low quality (and lower contrast) paper or directly to my LCD computer screen, which I have adjusted to low brightness, with soft colors. High functioning Asperger's? Absolutely. Meet me on the street and I'll seem quite normal, or rude (If you try to get me to engage me because I won't), but polite and cordial conducting regular business. Meet me a second time, I will have no idea we met the first time unless there's context or you have something unusual about you (they call that face-blindness). Those few 'friends' I have are long time acquaintances that accept me as I am, know I'm 100% trustworthy, and am as helpful as I can be. Yet I will not necessarily recognize them either. Show me a famous face from the 1980's or earlier and I'll tell you immediately who they are - not that I understand that. Physically, I've had times where I was truly athletic, others where I've wasted away, and for longer than I can remember easily worn out. Energy comes in bursts, easily forget to eat, sometimes force myself to eat and it comes back up. Blood Work: (I can't possibly list all of the out-of-range results here) Anti-DNase B: at a lab where the reference was a titer of 85: 480 in year 2000 240 confirmed two months later 340 confirmed in 2001 554 at the beginning of this month, with reference of 301U/mL Anti-Glomular Basement Membrane (something about determining Chronic Glomularnephritis due to the above) 21.2 titer (barely positive) in 2002 retest by another lab in 2010 "Neg" with no further information (a few months after severe change) Lyme: (too complicated to elaborate here) 2/2010 - "neg" at one lab 5/2010 - Western Blot "Pos" IgM, with "neg" IgG (fine print says could be false positive with EBV - which I have), and positive for Borrelia Burgdorferi Plasmid (no other tests showed positive) 7/2011 - convervative lab: "Neg" near simultaneous tests at two labs: one shows Babesia Microti previous infection, other shows "neg" A doctor decided to treat my results and symptoms as a new infection of Lyme since last October (he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC, so I've been on a severe course of antibiotics, antimicrobials, anti-whatever for a full year at a cost of $10K so far [covered by insurance] and shockingly, my body is improving significantly. At first I thought this was due to the simultaneous treatment with Testosterone, as mine was marginally low, and I've verified his treatment all along with a highly renouned Urologist. Here's where it gets bizarre: after a few months, my testosterone has increased near 1200 (very high) so I keep lowering my dose slowly to less than half, and my level keeps staying up there. The Urologist says this is impossible. He says it is unprecedented. He concludes the only reasonable explanation is that some systemic disease is resolving. CFIDS (Chronic Fatigue Immune Deficiency Syndrome) HHV4 (commonly called Epstein Bar) tested strongly positive in 2001, 2009, 2010 HHV6 tested off the charts high for IgG in 2001, and 4x reference in 2010, but IgM neg when only test was done in 2001 Symptomatically: thoroughly and completely consistent with this Syndrome, which many will say is not actually a diagnosis, but a description of symptoms; grouping together similar patients. A couple bouts of Fibromyalgia in over a decade, but gladly not long lasting. Tested for just about everything possible, ruling out all the obvious, and ~2001 learned that old records get destroyed, so went back and acquired every result that still existed, and keep every new result, and have them summarized. This prevents retesting the same old things every five years, as happened all my life. After relatively successful time through my 20's, I "crashed" starting in 1998, was put on the first 'band-aid' psychotropics which made things worse, cold-turkey switched to another set (major error and they would know better) which made me bonkers, switched and added and messed with my brain for about a year, then found my present psychiatrist which halted all that, tried several more but conservatively, and finding that they all made things worse, continued with testing and treatment of symptoms and I slowly went through stronger benzodiazepines, ending up stable on diazepam - not to suggest that's any cure, but at least I take absolutely no other psychotropics and do better than when I was on them. Permanent brain damage likely due to the 'bad science' in early 1999. Applied for disability in summer 1999. Have been mostly housebound since, with periods of reasonably good mental and physical health. I realize this is entirely improbable - but it is factual. I'm continuing the Lyme treatment which I guess I'll list (though may be incomplete) which will continue, possibly for a couple more years. Suggestions on protocol changes are welcome, as future stages will include anti-parasytics, maybe anti-malarials, and who knows what else. Thing is: I don't know that Lyme is really what he's treating. It is my suspicion that some systemic infection(s) are being treated, even if they are not even being identified: 1 year on Zithromax, concurrent to the following, some switched, others overlapped depending on how they might interact or affect the liver: Mepron for four months Ceferoxime Axetil Clindamycin (I think I'm forgetting some) concurrent to (not for Lyme) Testosterone injections (now tapering off) anastazole (now tapering off) Armour thyroid (now tapering off) diazepam (went up due to effects of others, may taper off) I have basically seven times a day that I take medication per protocol - makes it hard to leave home. Is this typical? Is it even like anyone else? Is it quackery that I'm allowing myself to be subjected to? (I'm terrible at proof-reading, and don't doubt some words or sentences are a bit out of whack) Lyme Green Panda (with TLD and CFIDS, too)

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 really well this summer and was definitely getting much better, but in the last few weeks, I’ve gone downhill fast. When I started Rifampin two weeks ago (in a MWF pulse dosing), it dramatically accelerated my decline. I still have an occasional, pretty-good day, but most of the time, I’m so depressed I can barely take care of myself. My word-finding issues have returned, and I speak nonsense frequently. The atonic seizures (one of my most severe PANS symptoms since 2014) have come back, too. I feel confused and disoriented often, with periods of time when I feel dissociated and really far away from everything around me. I’m having all of the symptoms that I get when all breaks loose with a full-blown PANS exacerbation/relapse. Yet my parents claim I don’t have the same “look” as when I’m really at rock bottom. My LLMD thinks I’m herxing, but my psychiatrist thinks it sounds more like PANS (purely autoimmune) and that Rifampin is making my psych drugs (Wellbutrin, Lamictal, and Seroquel) less effective. My LLMD did warn that this new Lyme protocol could make my mood symptoms worse, but why so many other symptoms? So far, my other herxes have never lasted as long as this, so I’m afraid this is an autoimmune thing again. I'm detoxing with Burbur and Alka-Seltzer Gold, but any reduction in symptoms never lasts long. Has anyone else had a similar experience with Lyme treatment, and especially Rifampin? If so, what do you do to make this better? I’m so tempted to do a Prednisone burst, because that’s almost always made PANS symptoms go away, but I know that’s a bad idea with an active infection. But how am I supposed to keep living like this?

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 a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!

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.

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!

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 about remaining symptoms! I want my son back!

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 about remaining symptoms! I want my son back!

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?