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Found 102 results

  1. Recovery Time

    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....
  2. 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??
  3. 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
  4. 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!
  5. 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?
  6. 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?
  7. 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!
  8. Frazzled

    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!
  9. 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!
  10. 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.
  11. 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?
  12. 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!
  13. Hello, all. I joined the forum today and skimmed messages for our issue. I have a 17 yo daughter who is positive for lyme, bartonella, and babeisia. She is in treatment for those as of April and also has an eating disorder that she began treatment for in September of 2016. I am desperate to connect with anyone who has had the two illnesses as her ed psychiatrist does not believe that she has the tick infections and she is herxing bad (increased eating disorder and other symptoms.) Decreasing the antibx will not stop the restriction cycly. Her llmd does not fully understand the eating disorder and we are headed for a major hospitalization when she becomes medically unstable. Thanks. Amy
  14. Hello everyone, my 21-year-old brother was diagnosed with PANDAS shortly before his 18th birthday, and he also has a past history of Lyme disease. He has been in and out of the hospital and psych wards over the past several years and often unable to care for himself and in a psychotic state. I know that there is toxic mold in the home where he has lived his entire life and recently he went to stay with his older sister for a week and saw some small improvements (was able to eat, carry on some conversation, etc.) but when he returned to his home with my parents and two other brothers he grew intensely worse and ended up hospitalized again. My family has not seen any connection between mold and his condition and just attribute it all to the inflammation they are told is in his brain. The only thing he has received in the past that has given any help were the IVIG infusions but they never lasted and this past time, there has yet to be much improvement seen from them. I am putting out a call for help to any parents out there who may have some helpful advice, experience, and especially scientific evidence on the connection between mold and PANDAS, especially because I am 99.9% confident that my brother is one of the 25% who is unable to detox the mycotoxins from mold. I had to leave that house because of my own chronic illness and the mold keeping me from stabilizing or improving. Thank you so much for any help you can offer. Grateful!
  15. DS8 is 19 months in since the sudden onset. We've had multiple abx treatments, tonsils removed, IVIG, high dose pulse steroids, 10 weeks of partial hospitalization for ERP therapy, another round of diagnostic testing. Positive for D1 antibodies on Cunningham panel, positive for Babesia duncani, and lyme. Some indication of bartonella. Treatment for lyme & co-infections. Another HD IVIG...more Babesia/Lyme/Bart treatment. Added LDN...switching out abx for Lyme&Co. Overall better than last year but aggression and liability issues still. Still getting one or two red hot ears without explanation (maybe lyme?) frequently. Still dealing with enuresis. Currently on minocycline, cefuroxime, mepron, ibuprophen, LDN, glutathione, probiotics (visbiome & florastor), loratidine (antihistimine), vit D, BLT drops, phosphotidylcholine, multi-vitamin. So the question is...do you think it is time for plasmapheresis? Thanks!
  16. I've read on this forum that candida overgrowth can cause behavioral and psychiatric flare symptoms that can be mistaken for a typical PANDAS. And now, after several of these flares I'm starting to think what I thought of as PANDAS has really been Candida all along, or at least on several occasions. Questions-- 1) what are the behavioral/psychiatric symptoms associated with candida overgrowth? are they different than a strep induced PANDAS flare? 2) from my description, do you think she has candida, if not, what else could it be? 3) any treatment recommendations for candida overgrowth? DD6 was diagnosed with strep throat and PANDAS two years ago and had a remarkable turnaround after antibiotics and oral steroids, but no return to 100% baseline. She was then diagnosed with Lyme a year ago and we are taking the slow and steady approach to treating lyme with our LLMD. We are also treating PANDAS flares with oral steroids and now more recently with IV steroids (solumedrol), with the hope that she will not need repeated steroids in the future as the lyme dies off. Over the years she has on several occasions experienced acute episodes of: a red rectum, red vagina, agitation, anger, fears, separation anxiety, and sensory sensitivities - but coupled with normal perianal culture and normal urinalysis. All of this (perianal redness and aggitation, normal test results, etc.) came back with a vengeance following her recent IV steroid infusion. Im thinking its Candida. Any thoughts on it being something other than candida? Her Current Treatments Are-- GAPS Diet daily prophylactic amoxicillin Beyond Balance MC-BAR-1, MC-BB-1, MC-BAB-2, Mycoregen, MC-BFM-P, IMN-V-II DesBio Upper Respiratory Staph and Strep Klaire Labs Ther Biotic Complete, and Klaire Labs BioSpora Prescript Assist Probiotic Glutathione Tri Fortify orange Takesumi Supreme Thank You for any time spent reading and responding to this post, as I am second guessing my entire treatment plan for her right now.
  17. 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 ;-)
  18. Thank you for taking the time to read my post. Since December 17th, 2016, suddenly I have been experiencing episodes of intense anxiety, depression, depersonalization, disassociation, panic etc. These usually happen in the evening, every other day, and last for awhile (from hours to days). At the same time, there is a lot of brain fog, fatigue, and I just know there's something not right in my head, mentally. And I am very certain that it is caused by something physical (hence, why I did lyme testing). I don't have any physical symptoms such as joint aches, but in the beginning I had a constant back of the skull pressure type of headache. Recently, I took a blood test for Lyme. Here are my results. ELISA: 0.92, which is in the EQUIVOCAL range. Western Blot, Reactive Bands: 41, 58, 66, 93 (IgG) and 41 (IgM) Right now, my doctor is saying to take doxycycline 100mg twice daily for 30 days. Then after the 30 days, I will do a second western blot. Do you guys have any advice what steps I should do from here? Thanks again. REFERENCE RANGE: <=0.90 INTERPRETIVE CRITERIA: <= 0.90 NEGATIVE 0.91-1.09 EQUIVOCAL >= 1.10 POSITIVE The use of purified VlsE-1 and PepC10 antigens in this assay provides improved specificity compared to assays that utilize whole cell lysates of B. burgdorferi, the causative agent of Lyme disease, and slightly better sensitivity compared to the C6 antibody assay. As recommended by the Food and Drug Administration (FDA), all samples with positive or equivocal results in a Borrelia burgdorferi antibody EIA (screening) will be tested using a blot method. Positive or equivocal screening test results should not be interpreted as truly positive until verified as such using a supplemental assay (e.g., B. burgdorferi blot). The screening test and/or blot for B. burgdorferi antibodies may be falsely negative in early stages of Lyme disease, including the period when erythema migrans is apparent. Test Performed at: Focus Diagnostics, Inc. 33608 Ortega Highway San Juan Capistrano, CA 92675-2042 H J Batterman MD REFERENCE RANGE: NEGATIVE As per CDC criteria, a Lyme disease IgG immunoblot must show reactivity to at least 5 of 10 specific borrelial proteins to be considered positive; similarly, a positive Lyme disease IgM immunoblot requires reactivity to 2 of 3 specific borrelial proteins. Although considered negative, IgG reactivity to fewer specific borrelial proteins or IgM reactivity to only 1 protein may indicate recent B. burgdorferi infection and warrant testing of a later sample. A positive IgM but negative IgG result obtained more than a month after onset of symptoms likely represents a false-positive IgM result rather than acute Lyme disease. In rare instances, Lyme disease immunoblot reactivity may represent antibodies induced by exposure to other spirochetes. Test Performed at: Focus Diagnostics, Inc. 33608 Ortega Highway San Juan Capistrano, CA 92675-2042 H J Batterman MD
  19. I've read some old threads on IGeneX Lyme Western Blot, so I know that only some bands are specific for Lyme. However in viewing DS's results, I was surprised that IGeneX does not count any indeterminate bands, though many LLMDs seem to. What's the reason for / against? Can someone help explain whether DS does or does not have Lyme and/or babesiosis? Borrreliosis Western Blot bands: (I mark in RED the bands IGeneX states are specific for Lyme) 18 23-25 28 30 31 34 39 41 45 58 66 83-93 IgM - - - - I - - I - + - I IgG - - - - - - - + - - + - Babesiosis: B. microti IFA - IgM Serum 40 (neg < 20) B. microti IFA - IgG Serum < 40 (neg < 40) Babesia FISH Whole blood Neg BTW: He had been on Zithro for months, but was off Zithro ~ 6 days @ blood draw). So, can some of you veterans help me? What does the Western blot mean regarding a Lyme infection? How long do the IgM levels stay elevated? Should I think of him as having Lyme or not? How likely that he would have a co-infection w/o the Lyme itself? If IgM B. Microti is positive, wouldn't he also be positive by FISH? Are LLMDs pretty consistent in how they'd interpret this, or does it depend on the MD? Thanks. wisdom-seeker PS. DS had his first IVIG a month ago, and I need to decide when to repeat. He seems a bit better, though his headache is constant and annoying. And this week his anxiety and intrusive thoughts are off the chart, and he's feeling very off. Still, I don't want to repeat IVIG if we need to treat this stuff first.
  20. Hi everyone, My 9 year old DS has been treated for the past 2+ years at Stanford Children's Hospital for CVID and PANS, and by another local MD for congenital tick-borne infections (ehrlichia, babesia, and borrelia - aka Lyme). After monthly rounds of IVIG 'maintenance' doses for the past 2+ years to treat CVID and 5+ years of antibiotics to treat the tick infections, he's improved overall but had new symptoms appear that led me to ask Dr Theinemman at Stanford to consider plasmapheresis for my son during our appointment today. Those symptoms include: - self injurious behavior and aggression towards me (jumping on me and pulling me by my hair when upset/raging) - severe OCD to the point of being life threatening (obsession with public restrooms and flushing toilets - he'll race across busy streets if he sees a Starbucks where he knows there's an easily accessible bathroom, run into strangers' houses to get into their bathrooms, etc.) - severely restricted eating (no protein since sometime in late 2015) Dr Theinneman is 'on the fence' about plasmapheresis for him due to some of his underlying infections potentially still being active and causing inflammation. She is going to discuss with Dr. Frankovich and call me in a couple of days with a decision. My questions for you are this: - if your child has undergone plasmapheresis, did s/he have an active/underlying infection at the time? Did s/he also have CVID? - what was your child's response to the pheresis? If s/he improved, how long did it take to notice improvement? - if your child got worse, what symptoms got worse, and did s/he return to baseline after a period of time? - if your child got worse after the pheresis, did you pursue any other treatment options? What were they? What was the outcome? Lastly, a huge thank you for all of the prior postings on this topic! They have been very helpful :-) And, thanks in advance to those who will (hopefully) respond to this post of mine; my appreciation of the dedicated, exhausted parents and concern for their precious children cannot be adequately expressed in a post
  21. My daughter was diagnosed with pandas three years ago after a sudden onset of crippling OCD intrusive thoughts. She had previously had episodic stretches of eye blinking tic, urinary frequency, generalized anxiety, and some OCD tendencies but the thoughts knocked everything out of the ballpark. They came on fast and took over. AFter 5 or 6 months of we found a pans doc who put found that she'd had mono and probable Lyme (equivocal ELISA test but negative WB) and put her on ABX for many months. The thoughts disappeared and we had our daughter back - quicky but totally free of horrible obsesive thoughts of violence/sexual/social stuff. Flash forward two years. She gets abx resistant respiratory staph (along with her sister, who also had strep) and then she gets diagnosed AGAIN with mono. Exactly two months later the thoughts come roaring back like a bad dream and starts again for our family, especially me (mom) who she confesses to. No doctor could explain why my 11 year old has had mono twice in her life and her regular family practice doc says it isn't pans and that lyme docs are quacks. Great conversation we had before I took my children elsewhere. After visits to PANS psychologist and LLMD's were uncover that she is lyme positive both CDC and IGenex. IGM Bands 31 ++,39+, 41+, 83-93+, but IGG band 41++ only. HEr LLMD starts her on ABX on top of anti-inflammatories prescribed by PANS doc. (Turmeric and EPA) LLMD says we will never know how old the lyme is, though from what I read IGM means acute (not old) infection. I have so many questions. My daughter had multiple bites as a young child in the NE states and I know now they were mishandled. No prophylactic abx, improper removal of ticks (including a time I totally botched it and the head was detached). She had chronic drenching night sweats as a four year old, along with extreme night terrors and major sensory issues. She also had massive reactions to any bug bites and every summer ended up in the ER when a fly bite led to her eye swollen shut or her nose or face disfigured. She also had bites on her back that for 6 years flared up periodically. No doctor could explain it. They would be red and hot and itchy, despite being years old - this would happen every 3 months or thereabouts and came along with a deterioration in behavior. I feel intuitively and practically that this lyme is old, but I can't know for sure, according to our doctor. IF it is an infection aquired 8 years ago I worry for my daughter. I just want to understand, and I want her to be healthy. I see how tired she is, out of breath from the simplest bike ride or run or typical childhood activities. We went roller skating today and she kept collapsing next to me out of breath. Her ped. detected a bit of breathing abnormality indictative of lung inflammation but had no suggestion of what it might be due to; and suggested steroids. We did not go this route. Looking for hope, feedback, insight. I feel so sad and stressed. I live and breathe for my children. BTW her LLMD was surprised that her Igenex babesiosis was negative.
  22. "Ticks will be tested for 6 pathogens: Borrelia burgdorferi, which causes Lyme disease;Borrelia miyamotoi, which causes tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, Ehrlichia chafeensis, which causes human monocytic erhlichiosis, and Rickettsia rickettsii, the agent of Rocky-mountain spotted fever, and the protozoan pathogen, Babesia microti." More info here http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/
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