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boysrlove24

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Everything posted by boysrlove24

  1. Thank you so much for the tip on MMS drops...I've never heard of that but will look into it today. Regarding Lyme...that's a very interesting thought. Gestational lyme had not occurred to me and I did not know that strep was a co-infection of Lyme. It makes me wonder if my DS12 has it as a co-infection...because he started this whole thing with sky high ASO titer of 678...and then it took several months of strep treatment that wasn't helping him to figure out he has Lyme. BUT, his ASO scores remain high and his tic continues even after months of lyme treatment. I've read that ASO scores can stay high while treating lyme so I just sort of put that to the side but now it's eating at me a bit as I ponder strep as a co-infection.
  2. Hi everyone, My DS12 is battling Lyme and PANS with constant tics and other related issues. Our story started a year ago with a high ASO titer blood test after sudden onset tics. He's since been tested positive for Lyme and co-infection. My younger DS9 'so far' has not presented with PANDAS/PANS behaviors but he is a strep carrier. In the last 6 months he's been treated for strep 4 or 5 times - it continues to come back and to make it even more difficult he NEVER has strep symptoms (fever, sore throat, etc) so it's a guessing game. Today I noticed an increase in my DS12's tic and decided maybe it's time to get a strep check for his little brother. Sure enough, positive. Now he's on clindamycin for 10 days and then it will be a waiting game for another month or two before it comes back. I'll know it's back when my older son's tic ramps up... Here's my question -- does anyone have experience with this? Any suggestions? Should I have my carrier son's tonsils/adenoids removed? I just don't know if removing his tonsils will help anything since he's a carrier. Won't he still be a carrier without his tonsils? What about a low dose antibiotic for him to keep the strep at bay? The difficulty here will be that he gets strep year around...it's not tied to strep in his classroom or school, it's just in him - so he'd have to be on a low dose antibiotic all the time not just during the winter. He continues to make his big brother sick and has also passed it on to me twice a couple of years ago. Would love to hear your thoughts! Thank you!!
  3. My son gets lots of headaches, lots! We recently learned that his Coq10 and Ferritin are both very low and have begun supplementing. Any chance your son is low on either?
  4. Hi everyone, My son is battling yeast like all of our kids on this forum...we've tried Nystatin but he had an allergic reaction to it. He has also used Candicidal for months and of course an army of probiotics. But still the yeast presses on... His doc has recommended Kolorex, which we are starting tomorrow - BUT I've been researching Raw Apple Cider Vinegar. It looks like 1 tbsp per day mixed in juice does wonders for a bunch of health issues. Anyone try this? Any luck with it or is it just a dream that something so simple could help with yeast problems?
  5. Hi TraceyB, I am pretty new to this forum as well...have been dealing with PANDAS/PANS for a year now...there are lots of much more qualified and knowledgeable people than me on this forum that I'm sure will chime in and give you great advice. The reason I felt compelled to reply to you is that last November my son was put on Guanfacine and Risperdal for tics that came on suddenly and constantly. They were not improving so we ran blood tests and his ASO titer was really high (678) so PANDAS was diagnosed. He went on a few rounds of Amoxicillin with no improvement, then Azithromycin - no help, then Augmentin - nope not useful, more Azithromycin combined with Augmentin and at some point Cefdinir. At this point we felt that there must be something else going on. We tested for Lyme and sure enough - he had Lyme and a co-infection. He is now under the care of an LLMD and being treated with a combination of various antibiotics and herbal supplements for Lyme. We are seeing gradual improvement and feel that he's finally on the right path - although it is a slow and painful, stressful process. Have you ruled out Lyme? Your story sounded like my son's in that you've tried multiple antibiotics and none of them are working so maybe there is another virus involved? Or mold? I've been told that if you have Lyme that steroids might not be a good idea. But there are much more experienced people on this forum that can better advise you on that. Just a thought - to check out additional viruses/Lyme/mold if you haven't already done this.
  6. My LLMD specifically instructed me to give the Alinia and Nystatin at the same time. The thinking is to give the "killers" at breakfast and dinner - these are the abx, anti fungals and antivirals together and then give the "good stuff" after school and before bed - this is the probiotics and supplements. It worked well for us until the allergic reaction but I'm still not convinced the reaction was from the Alinia. Too scared to challenge it though since the second reaction could be much worse than the first one.
  7. My son started taking a combination of Cedax and Alinia on August 11 with no adverse reaction (except the standard herxing) to either. This evening he took his evening dose of Alinia with his evening dose of Nystatin. About an hour and a half later while we were eating dinner he said his throat was scratchy and he started itching. About 15-20 minutes after that his whole body was red and he was head to toe scratching with intense itching he also got light headed and felt like vomiting (but didn't). I gave him Benadryl and 20-30 minutes later he was better with only minor itching and color returned to almost normal. Could he have had an allergic reaction to Alinia even though he's been taking it daily for 20 days? Or to Nystatin but he's been on that daily for 2 months. He is a pretty allergic kid but doesn't get random allergic reactions like this. Has anyone else had this problem with Alinia? I'm scared to give it again tomorrow to see if it was in fact the Alinia he reacted to - I know 2nd reactions to something are usually worse. But it would be a bummer if it wasn't the Alinia and I never know. Just seems strange to have a reaction to something after taking it for 20 days. Thank you for sharing your thoughts!!
  8. Thank you for the input! I opted *not* to do the IV curcumin after receiving your response. It seems too much of a trial now to submit my son to it. Who knows how he would respond. So, thank you! My son does take a daily curcumin supplement and two other anti-inflammatories: Cyflacalm and InflamAway. I can't really tell if they are helping...but maybe if I would remove them I'd see that they are helping a lot. I'm too scared to remove them for fear that his tics will blow up again...so for now I'm sticking with them. I will ask about Enhansa at my son's next LLMD appt. Thank you for your insights on the curcumin IV!!!
  9. Hi everyone - We are considering intravenous curcumin for our 11 year old son. Apparently, it's a incredible help for inflammation (which for my PANS/Lyme/Coinfection plagued son is running rampant). Does anyone have experience with receiving curcumin intravenously? I'm told it's about a 60 minute process and can be done once a month and makes a world of difference when it comes to inflammation. Would love to hear any thought or experience with this treatment... Thanks!
  10. Did you receive a recommendation for a PANDAS doc in Orange County? I live in OC as well and have a good integrative medicine doctor that we have been using. My DS has also been diagnosed with Lyme so now I'm spreading out to an LLMD but up to now I've been happy with our integrative medicine doctor - she is very thorough and caring. Let me know if you'd like a referral and I'll private message you.
  11. My son has just recently been diagnosed with PANS and Lyme. I'm very new to this forum and llm, mama2alex and sfmom have already been so helpful to me. This is a great place to get support from fellow moms with lots of expertise (more so than the doctors in some cases!!). My only feedback is that my son also tested positive for ANA - but he tested negative for RNP according to his labs (I just looked it up). When I first got this test result back I thought oh my gosh he has lupus? AND Pandas?! But three months later our integrative medicine doc was smart enough to encourage us to test for Lyme. We learned he is positive for Lyme and Babesia at that time. I'm hopeful that the ANA will go back to normal once we get through the Lyme and Babesia treatment. Have you checked for Lyme yet?
  12. Hi rowingmom, I'm new to the forum and was wondering how you treated the Babesia? My son has it but we are newly diagnosed. Thank you!
  13. Mama2alex, Thank you so much for your response. I would love to know the name of your new LLMD - thank you! You all have also clued me into mold - I guess you can have your home checked for mold? Is there a test that can be run on my son to determine if mold is an issue? I have an appt with his current integrative med doc tomorrow and will ask her as well. Sincerely appreciate your feedback!
  14. Hi llm, I'm going to private message you (hopefully I know how...) to see if you can recommend some Lyme/PANS docs in Northern California. Thank you!
  15. Hi sf_mom, I left a private email message for you. Your posts are fascinating and I'm wondering if you could help to point me in the direction of a good LLMD in San Francisco for my son. Thank you!!
  16. Would love to receive some referrals to Northern California LLMD/PANS experts. Thank you!!
  17. Very interesting about treating the Lyme before the PANDAS/PANS - isn't treating the PANS what will help him get rid of the inflammation? Or is it the Lyme causing inflammation? We are currently working with an Integrative medicine doc that has some experience with both PANDAS and Lyme but I would not say she's an expert in either. We decided last week to fly to NJ at the beginning of August to see Dr. Trifiletti - to help us understand what is happening with our son. We live in Southern California and I've found that there are several docs here that know a little about PANDAS/PANS but nobody knows a lot. I fear that our son will continue to worsen with each month that goes by as we hop from doctor to doctor trying to find someone that really knows what we're dealing with. I'm very concerned about the Lyme mix in our situation though and I'm praying that Dr. T. has dealt with both. He is the expert right so I'm hoping he will help us. Otherwise I think we'll end up trying different antibiotics and treatments that don't help my son and possibly make him worse.
  18. Hi! thank you so much for your wonderful response. Your reply made us very hopeful for our son. Couple more questions if you don't mind. Do you think your journey would have been shorter or different if you had identified that Lyme early on? Or do you think it was the natural progression of things? I feel fortunate that we have discovered not only PANS but also Lyme 7 months into our journey. I know it could have been much longer but it's because of forums like these and mothers like you and everyone else here that we were able to find PANDAS/PANS and get a quick diagnosis. You mentioned sterioids and IVIG. We have been told on several occasions that IVIG is the next thing for our DS. We have also heard that one way to be sure that IVIG will help is to try a steroid burst - if he improves with the steroid then there is a good chance he will improve with IVIG. What do you think about this theory? I've read on this forum that steroids did help eliminate the tics for a brief period but in every case they come back and I saw many say that the tics are worse. Any experience you or anyone reading this has with steroids would be great to hear. And what about IVIG - how many rounds did your son go through and how did he respond? We are also wondering about tonsillectomy - my younger son (without PANDAS/PANS so far) has been identified as a strep carrier - he is it but we don't know it because he has no symptoms. Wondering if not only my PANS son should have a tonsillectomy but also my younger boy due to this carrier situation. Oh my goodness...it can be so overwhelming some days. Thank you for your help and insights. I hope some day I can help someone in the same way that you are on this forum.
  19. Hi everyone, I'm new to the forum - my ds11 was recently diagnosed with PANDAS/PANS and Lyme. He had a positive Cunningham Panel, and positive Western Blot IGM, IGM Epitope and positive B. Duncani coinfection. We have been treating him with doxycyline, bicillin injections and Tindimax to address the Lyme. Last November he developed a head tic which was treated with antipsychotics by a neurologist. It wasn't helping so she ran some labs and determined he has PANDAS. Since then he's also tested positive for Lyme. I'm wondering if anyone else has experience with both PANS/PANDAS and Lyme? Have you made any progress? How do you treat it? Do you go after the inflammation from PANS first? Or do you try to tackle the Lyme first? He's been on antibiotics for the Lyme for 40 days now and his head tic is not improving so I'm wondering if we should really be treating the PANDAS/PANS inflammation and immune system problems first? I'm very confused - and exceptionally concerned that my son has been on so many antibiotics to treat the Lyme with little to no improvement in the tic. If anyone has any thoughts or experience in dealing with this I would LOVE to hear what you've learned on your journey and what has helped/not helped, etc. Thanks!
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