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  1. 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
  2. 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 expl
  3. I've got a few questions: ECP test:do LLMDs think the ECP (eosinophil cationic protein) test is useful to monitor the intensity of babesia infection? Would IVIG invalidate the ECP test, like it would an IgM/IgG assay? treatment:I've picked up prescriptions for Alinia and Malarone for the babesia. What side effects should I expect from one or both? Should I first start one and then the other to separate side effects? Also, kiddo's had Diflucan for 4 days last week. His headache's a bit worse, and he's been feeling blah and very stressed. Could that be a herx reaction? Kiddo thinks it is from
  4. "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/
  5. 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
  6. 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?
  7. 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 option
  8. 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
  9. 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
  10. 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
  11. Hi, I know that alot of people use magnesium for their children to help them sleep. My DS (24) sleep has gotten worse, to the point that only seroquel works. I would prefer not to give this and want to try magnesium. My question: His magnesium levels are fine so is it still ok to give magnesium. Also he has constant diarrhea which we are trying to fix so I read to give Magnesium Glynicate because it doesn't create diarrhea, yes? There is also a newer form out now...Magnesium Threonate, supposedly gets into the brain better, has anyone used this? Also what dosage....50
  12. Hi, Has anyone used Metabolic Maintenance REM Maintenance for sleep? Was just recommended this by our doc. Does it work? Hate to spend more money if it doesn't work. My DS (24) will only sleep if given seroquel. thanks frikfrak
  13. 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
  14. 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?
  15. Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks
  16. Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks
  17. Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of co
  18. Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom
  19. Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak
  20. Hi, Need some advice....freaking out abit. Had appt. yesterday with neurologist at NYU....told him everything about my DS 23. Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair. He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest.
  21. 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
  22. Hi, Called Dr. B but they said they do not take my insurance and even if I come in they are not doing IVIG right now and if they did my ins. wouldn't pay for it. They said they will put me on a waiting list if I want, supposed to call back. Can someone please give me another immunologists or another doc that does IVIG. LLMD thinks IVIG would be good for my DS. Nothing else has worked. thanks His Mom
  23. Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it
  24. 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..
  25. 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
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