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Found 114 results

  1. 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?
  2. 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
  3. 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!
  4. 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!
  5. 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.
  6. 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
  7. 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.
  8. 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
  9. 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.
  10. My 11 y/o son is homozygous for COMT V158M and H62H, MAO-A and MTRR. He is heterozygous for MTHFR C677T, A1298C, AHCY-01, 19 and CBS C699T/A360A. He is having tons of problems with depression, mood, anxiety, etc. He refused to go to school 4 days last week. He also has Lyme and Pandas. We are working with a functional medicine dr and put him on Prozac last week but now I'm reading that an SSRI with his COMT mutations may not be the right way to go….that maybe an SNRI is a better option. After 3 days on the Prozac he seems more irritable than before. Can anyone help?
  11. "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/
  12. Hi. New and overwhelmed. My 4.5 YO had a sudden onset of motor and vocal tics, adhd, clumsiness, OCD, sensory stuff, sleep disturbances, tantrums after falling sick with a cough/fever Dec 2015. Pediatrician suspected PANDAS and started him on Cefdinir however ASO/DNASE negative. Symptoms improved 50% in a month however new symptoms kept emerging. We saw Dr B who ran more tests and diagnosed PANS with borderline Lyme. See Igenex and Galaxy results below. Started on Azith, Cefdinir and Malarone last week. We are seeing an increase in some symptoms (herx?) while others are in check. In hindsight, my son was bit by an insect when he was 3 but the ER doc did not think much of it and sent us home with a topical lotion. There have been symptoms (eg tantrums, meltdowns, wanting to be carried) that we chalked up to difficult boy behavior. So sad this has turned into full blown PANS. Do you think this is Lyme/PANS? I would hate to treat him with antibiotics/anti-malarial for two years if he doesn't have Lyme and we should have been looking for something else. BUT if it is Lyme then I need to toughen up and prepare for a long road ahead. Igenex Lyme: Negative overall IgM 41 IND IgG 23-25 IND, 39 IND, 41+++ B Microti IgM 20 (may or may not indicate active infection) IgG <40 Galaxy Bartonella IFA 32 (less than or equal to 32 indicates negative. Greater than 1.64 positive) All other co-infections negative. My questions are: 1. Do you think he has Lyme, Babesia, Bartonella? 2. Are there additional tests you would recommend to confirm diagnosis? 3. I keep reading that there is no cure Any stories of successfully eradicating these infections? 4. What treatments and length worked best, especially if you had a young child? 5. Should we find an integrative LLMD in addition to Dr B? Any suggestions close to NYC? Sorry for so many questions and thank you for your help! C
  13. Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
  14. Our doctor has put my son on a gluten-free diet as part of the Shoemaker protocol for treating mold toxicity. Five weeks in, I've come to realize that he's not sticking to the diet whenever he's out with friends. Every time I catch him, he promises he'll stick to it moving forward, but its not happening. I've given him good food that he likes, including spending a lot on sushi for lunch occasionally, going to the GF bakery for sandwiches, but this hasn't been enough. He's a kid who definitely has food addictions (sugar/carbs) and who resists change or doing anything uncomfortable unless he understands WHY he has to do it, but so far I haven't found much to help me explain it to him in a way he can understand. He's 15, but probably has the maturity of a 13-year-old. Has anyone been through this and know of some good online resources and/or books, articles that might help us? I think even a picture book explaining what gluten can do to the body would be helpful. Any help would be appreciated - I'm stuck between the doctor who says we "have to" and the teen who won't!
  15. help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know?
  16. Hi, Does anyone know if its OK to give the Pneumovax vaccine? Both LLMD and immunologist wants my DS (24) to get this. LLMD because wants him to be protected and immunologist because we're looking into IVIG and wants to see if he responds to this.This immunologist does know about PANDAS, heard she is very well versed in it which is why we went to her. Right now he qualify's for IVIG because of his numbers. Saw neurologist last year who also wanted to do IVIG and didn't mention this, was just going to do IVIG but we weren't convinced then or ready to do it. Running out of options and hoping this will help now. Treated for over 5 years for lyme / babesia / parasites. Seeing top LLMD for over 2 years. Latest treatment was for bartonella....Rifampin paired with others since Dec. and no real improvement, so LLMD took him off everything and is currently on Difflucan daily for possible yeast. I'm thinking wasn't on the bart treatment long enough because bart streaks did appear about 3 months into treatment but now have disappeared off treatment. Anyway....any thoughts on the vaccine? thanks frikfrak
  17. Does anyone here know whether plasmapheresis gets rid of Lyme spirochetes? Thanks. The reason I ask is because I suspect I may have nanobacteria, due to symptoms which mimick Lyme, so I thought if plaspapheresis could zap spirochetes, then it can zap anything.. In 2005 a mammogram indicated grossly dense breast microcalcifications which were non-cancerous. Ever since puberty, in fact, I was unable to lie on my breasts, so I suspect long-term nerve damage was committed by my internal nanobacteria.
  18. I just want to know if anyone else's child has these weird triggers. Please note my son has Lyme and PANS, and pretty much his only symptoms are severe motor/vocal tics. My son's tics are triggered sometimes by certain words/ideas (feet related, insect related, bodily functions, 'gross' things), the sounds of people coughing/sneezing/blowing nose, the sight of the above mentioned things (can't look at feet, bugs, etc). They *might* make him feel anxious, but what happens is that he has a big tic or a series of tics. For example, yesterday I asked him not to "get underfoot" when he was in the kitchen. B/c of the word 'foot', he had of series of tics - a couple of kicks, swearing, yelping. This happens EVERY time he sees something he "doesn't like". Driving by a billboard advertising a pedicure - tics. Blowing my nose - tics. Joking around and he drools while laughing - tics. A fly on the porch - tics. Learning the digestive system at school - lots of tics. The neuro that we see says it's like a psychological thing. The psychiatrist who assessed him couldn't categorize it into anything; she said 'unspecified anxiety disorder'. Almost a phobia, but not really a full on phobia b/c he can control the tics better when he's at school. Is there something he is lacking? a supplement he should be taking? He's on abx (azith and herbal) and he takes magnesium. I was thinking about trying niacinamide as I've been reading about how it's calming and can also help tics. Any suggestions? Thanks for reading.
  19. Hi, My DS (24) still not getting better after 5+ years. Too long of a story to go into it but have tried everything. LLMD and Pandas doc think its time to look into IVIG. Went to Neuro and he agreed to do it. I made appt. with Dr. B in CT just for another opinion. They said will have to test whole family with test, not covered by insurance. Could be up to 1400 per person in household. Is this normal? Can hardly afford test and appt. for DS no less rest of family. Is this a deal breaker if we won't do it? Has anyone else had to do this with this doc? Should I even bother to go see him? Just thought I should see an immunologist. Any info would be greatly appreciated. frikfrak
  20. Has anyone found plasmapheresis on the west coast. My son has been suffering severely for past two years with bad flair and lex has been mentioned by llmd and two neurologists but don't know where to get it.
  21. I'm hoping some of you can weigh in on this. Our 11 year old dd was first diagnosed in Oct 2014 following sudden and severe onset of separation anxiety and mild ticing. She has been on home tutoring the entire school year as we wait for her symptoms to improve. Initially the only positive test was for mycoplasma but as we visited additional docs and had more testing other issues emerged. Dr Ts testing revealed high Coxsakie B IgG titres and high IgE titres. Follow up testing revealed no allergies or parasites, the typical cause of elevated IgE. After 2 months of Zithromax, 1 month of Biaxin, and 2 weeks of Levaquin along with a large variety of supplements we saw no improvement and decided to get another perspective...though Dr T was great and we will likely seek his opinion again in the future. In the meantime we are now seeing Dr B in the Hudson Valley who is much closer to home and has been fantastic. Thinking we should have seen some progress he ordered up even more tests. Despite previous negative Lyme tests (Elisa and Labcorp) she is positive on the Igenex test and also came back positive for Anti-DNase B Strep antibodies and high HHV 6 antibodies. Dr B changed her to minocycline for the Mycoplasma and added Ceftin for the Lyme. What is especially confounding is that she is essentially physically asymptomatic with just occasional mild headaches and mild lethargy. Meanwhile her psychiatric symptoms have been pretty severe. She seems to have an immune system that is just not functioning properly. If anyone has dealt with PANS/PANDAS with multifaceted triggers I'd love to hear about your experience, your doctors theories, and treatment options....thanks!
  22. What dosages of steroids and what kind have you found helpful. Seems like a good dose to bring down inflammation well and chill the immune response but not suppress too much would help. Two year scary violent, OCD, tics, fears flair not responding to anything, then I recently tried 800 mg ibuprophan and violence gone within 10 hours, amazing. But feathering on edge, every time we have tried to kill any pathogens he would just get more scary violent. Then my husband brought home cold virus and my son went homacidal, biting himself and us, self abuse bad etc. can't tolerate phenol herbs last few years, so thinking time to try steroids but last time we did 21 day taper starting at 20 mg he was so shaking and jittery feeling from that high dose then he caught a bad cold for six weeks, but that was first time he got cold symptoms in years, 2007 had a virus of some sort, got meningitis and hasn't had fever or cold symptoms since. It might have been myco in 2007 said Stanford immun, his igg is still very high. So what dosage and type of steroid and for how long has worked well.
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