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Found 24 results

  1. This is a case report about a 14 year old boy with psychiatric issues. Turned out to be PANS. Published in the Journal of Central Nervous System Disease, just a few days ago. There are images of the Bartonella rash. Just like the rash my dd has had in past. https://doi.org/10.1177%2F1179573519832014
  2. 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
  3. 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?
  4. 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
  5. 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!
  6. 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
  7. I want to hear other people's experiences about Lyme/ bartonella . How to help him while I wait 2 months for dr. Appt and can anyone recommend a dr in maryland/va/D.C.?
  8. 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
  9. 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
  10. 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 hinds
  11. 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 bothe
  12. Hi, We just finished a bottle of Researched Nutritionals Arteminisin and have to order more but been reading up on Hopkinton Arteminisin. Would definitely like to try this. Does anyone have any info on it....helping? where to purchase? how much to take? thanks for any help frikfrak
  13. I read a post a while ago about Stephen Buhner's book and protocol, "Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma". I downloaded the book and it is extremely informative. I am trying to schedule a consult with his referral (Julie) for 2 weeks from now. I am curious if others have tried this approach to kill mycoplasma and if it was successful. If so, how long did it take and do you have any suggestions. Thank you. Heidi
  14. Hi, Can anyone help with how to take Zeolite. I purchased the powder form and it states "Does not mix well in water" They suggest putting it in yogurt but we are dairy free. Can I mix in applesauce? or something else. My DS is great with taking anything. I'm sure if I did put in water he would just down it, how much water, full glass? Also do you detox everyday or maybe just on weekends? I'm assuming you need a 4 hour window just like activated charcoal so at best I can only do this once a day.....good enough? For how long, weeks, months? thanks for any help frifra
  15. DD13 is doing wonderfully! Three years ago I would not have believed that she could improve to the extent she has. She has lost all cognitive/executive impairments and her Tourette's is only suggestible (if I ask if she needs to tic she will have to - motor only, no vocals), and not otherwise visible. Going back to school has not resulted in any sort of relapse. We were at the cottage this weekend and without me asking she got out her homework (Grade 8) and reviewed (reworked) 30 math questions for a test that she has today. She packed the homework herself, got it up to the cottage and took f
  16. I want to do the Igenex co-infections panel on DS, who tested positive for Lyme a few months ago, but he is on two abx currently (plus some natural antimicrobials and a host of supplements). I don't want to risk taking him off abx because he is doing well on them right now, but if he is taking them, will that mess up the results of the testing? He is on Augmentin and Biaxin which I do not believe are used to treat babesia or bart. What about the other co-infections? I can't find any info on the Igenex website about how abx affect the test results. Help please?
  17. This was posted on another forum and I thought it relevant to our story, and perhaps to those of others here. DD's major downturns have both coincided with MMR vaccinations. http://sanevax.org/gardasil-decision-will-always-regret/ Thanks "surprise"!
  18. As DD with PANDAS/PANS is being treated for lyme and Bartonella, we mentioned our DS also has "stretch marks". He is healthy and "typical". The NP treating DD said DS should be treated for bartonella if the stretch marks are in fact bartonella rash. What would you do?
  19. Hi, We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now. My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive. Then is 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections. So does this mean he now longer has any of this? We've actually gotten rid of it? If so then why is he no bette
  20. Hi all, Just hoping for some suggestions here: Recap: DS (23) diagnosed Dec. 09 with lyme, all bands positive and RMSF (was regular kid w/job/car/friends)....starting treating with 1st LLMD....DS very angry/let hair and beard grow (looked like mountain man), started listening to RAP music (which he never liked) all within 1st 6 months....started see Dr. B in Red Bank also. then switched LLMDs, all those symptoms went away and then starting being paranoid, calling police to confess car accident that he had had year earlier, washing hands, going in bathroom for long periods of time..
  21. Hi, Just received blood test back... ASO AB 375...3 months ago it was 368 DNASE-B AB 189...normal Streptozyme Screen....Positive A We've been treating lyme for 2 years then found Babesia, treating this for 1 year when I thought possibly he could also have PANDAS..only came across the ASO AB test after I had him tested because I had strep. My DS (23) doesn't speak, mentally disabled by all this, was "normal" before this all started. His babesia level is now 1:64, 3 months ago it as 1:1024 (normal is under 1:256) so I guess were doing much better as far as that's concerne
  22. Hi, My DS (23) has high levels of ammonia via blood test and high levels of lead (34) via urine provoked test. For ammonia, he was on Lactrolose for 30 days, 2 tablespoons once daily, and then we rechecked the levels and they actually went up...now doc wants him on it 2x day but because of everything else he takes we can't fit it in. Does anyone know of something else I can use besides Lactrolose. If so, for how long and how much? Also just received his urine results and it says high levels of Lead. How he could have gotten this I don't know. He was on 6 months of chelation pi
  23. My dd16 is scheduled to start clarithromycin in the am and I have been reading the insert. It states that it could cause psychosis and, Lord knows, we have dealt with enough of that with the disease so I don't want it with the treatment. I see that several of you have experience with clarithromycin/biaxin and I am hoping that you can share your experiences with me. I am doubly worried because we are flying cross-country on Wednesday and I really do not want to create a problem. She is currently doing pretty well, although we are still dealing with eating issues and a very short fuse. She
  24. I am very new at all of this so please bear with me. After years of trying to figure out what was going on with my daughter, she recently tested positive for mycoplasm, bartonella, HHV6, and some bands of lyme(though inconclusive). Mycoplasm showed current activation and past (IgG and IgM). Our current struggles started in December with a severe bout of Influenza B that dragged on and on resulting in severe depression, rage, mild ocd, intrusive thoughts, and ultimately she stopped eating. Completely. Hospital stay was pretty useless and nobody would even remotely consider PANS/PANDAS (I beg
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