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Everything posted by nemom

  1. Yes, we did see Dr. H about 2 years ago. We started our lyme journey with him. At that time, he did mention PANDAS/PANS to us, but also explained that he was not a PANDAS/PANS expert. I believe he would sometimes consult with Dr. B in CT if he had questions regarding a patient. Of course, a lot may have changed since we saw him last.
  2. Dr. D in Concord, NH. He's an integrative family doc and will see both adults and kids. He does accept insurance and works with all ages. Takes several months to get in. Dr. H in Portsmouth, NH is another one. He's a ND- does not accept insurance directly. Deals with a lot of lyme. Feel free to PM me if you need more info.
  3. I HIGHLY recommend this book: http://www.amazon.com/What-When-You-Dread-Your/dp/1433803186/ref=sr_1_5?s=books&ie=UTF8&qid=1377787466&sr=1-5&keywords=dawn+huebner+books We've had the pleasure of working directly with this doctor/author and her workbook series is all around AMAZING! I highly recommend this book on sleep issues (and many of the others in the series). I can't speak for everyone, but in our particular situation, my son's OCD behaviors and sleep issues started with lyme. After about 6 months of treatment (with improvement), I started to wonder if many of our problems were becoming more habit than a true medical issue. We worked though this workbook together and it worked...quickly! Prior to this I had been laying with him every night until he fell asleep and then I would return to his room where I slept every night for almost 3 months. I did this so my family could sleep and we could make it through the school year. I understand that desperate feeling! Here we are 1 year later and he still goes to bed on his own and sleeps through the night. Magic!
  4. We recently ran several of the Dr. Shoemaker tests for mold / chemical sensitivities for my son who has lyme. Based on his results he is sensitive to mold and multisusceptible (chemicals). I just started reading Surviving Mold by Dr. S and my head is about to explode with so much technical info! I understand this a complex matter and a lot has been written about it here on these boards. Specifically, I am confused about my son's Arginine Vasopressin (AVP antidiuretic hormone) results and how they relate to this issue. Any thought on this? His results are <1.0 and the normal reference range is 1.0-13.3. Our NP mentioned something about thirst and the need to go to the bathroom a lot. My son has both of these issues. His c3a was low at 28 (55-486 normal) and his c4a level is normal at 1256. If his c4a levels are normal, what would make this AVP low? Hopefully, this makes sense! Any help would be much appreciated!
  5. Thank you all for the quick responses! He did test negative for all co-infections through Quest. I understand that probably doesn't mean much. Bartonella sounds like a possibility. I would definitely characterize his moods as rage-like and angry. They come and go, thankfully it's not all the time. For those with Bartonella experience: If I didn't want to commit to the hefty $ for specialized testing (at first) are there herbal challenges (like the Samento challenge for Lyme) that you can try? He is currently taking Zithromax and Omnicef. Would it make sense to switch out the Omnicef for something else? If so, what would you recommend we try first? Any additional advice would be well appreciated. By chance, can anyone recommend a a well rounded practitioner here in New England? Sounds like we need a 2nd opinion for lyme / co-infections, possible mold/ yeast and anything else we haven't tried. MA, NH, ME would be ideal. Thanks again!
  6. Hello! Although I have been lurking around this site for awhile now, I haven't posted much. I have two children who have tested positive for Lyme. DS#1 responded well to 14 months of treatment and has been off all antibiotics for 5 weeks now. He's doing well (fingers crossed!) DS#2 (9 years) has been on antibiotics (Zithromax / Omnicef) for the past 9 months. His only symptoms (that we know of) are mood issues and a neck tic. The mood issues (anger, emotional, fussy, hard to please) come and go. It's not fun, but manageable. The neck tic was pretty strong at the start of treatment but settled down after a few days on antibiotics. It has been a constant, but it's pretty mellow and sometimes only happens a few times a day. It seems to pick up a bit when he is active or playing sports. It's the one real sign that something is still going on and I feel like it's always lurking in the background. We did have a couple weeks this past spring where he complained of stomach aches and diarrhea. We added 1 tsp of Nystatin to his protocol and that did the trick. I gave that to him for a couple months, but have since stopped. He takes several good probiotics daily. Our lyme literate NP recently had him tested for mold sensitivity based on Dr. Shoemaker's protocol. He has the dreaded mold and multisusceptible genes. C3a is low and C4a is within range. AVP is low. For detox, she wanted him to start with clay pills v. cholestyramine. We added that about 2 weeks ago. When DS was 2, we did have mold in our house from a poorly vented attic. It was professionally remediated. At the time, my son never experienced any adverse affects that we know of. He's been extremely healthy up until the lyme. We've never noticed any issues with strong scents or chemicals before. I ordered a ERMI test kit. I was actually pretty surprised by the HLA results. Here are my questions: Are clay pills enough for possible mold detox? Is there anything else we should test for at this point in time? Other infections? If so, which ones? He does not have OCD and nothing has led us to believe that he has a co-infection. Should we test him for yeast? Heavy metals? I've been reading a lot of great information on this site over the last few weeks, but I have to admit, it's hard to know where to start. Although we love our lyme literate NP, I think it might be time to get a second opinion too. Thank you in advance for your time! This is such a great community for info sharing and support!
  7. I'm sorry to hear about your negative experience with Tindamax, T.Mom. Thanks for sharing your story. I hope things turnaround soon.
  8. My son had a palatal expander (on the top only) installed a couple months ago. I was worried that it would be painful and annoying for him, but it was really a breeze. After the first two days, he was fine and doesn't even think about it at all now. I've never heard that it causes voice changes, but it does increase saliva in the mouth (just like a retainer does). He did talk a little funny at first, but I don't even notice it now. DS was diagnosed with Lyme (and had a head tic) back in December. His tic went away shortly after the start of treatment and nothing came back with the expander in place.
  9. Thank you all! I do plan to give Tindamax a try, but I will take your advice LLM and start slow.
  10. My boys take 1 tablet of Floramyces in the am and 1/4 tsp of Metagenics UltraFlora Synergy in the evening before bed. We've never had any issues with yeast since taking abx for the last year.
  11. Hello! My DS8 was diagnosed with Lyme last Spring. He was also diagnosed with PANS triggered by the Lyme. For the last 12 months he's been on a combo of Zithromax and Omnicef and doing wonderfully. I am happy to report that he hasn't had much in the way of symptoms for the last 6 months and absolutely no symptoms for the past 3 months. He was never diagnosed with co-infections (not really any symptoms and lab tests all came up negative). We feel pretty comfortable that he is ready to move on to the next stage of treatment. Our LLMD feels that slow and steady wins the race with Lyme treatment. At the end of April, she would like us to add Tindamax, twice a week to rule out (or eliminate) the cyst form. If all goes well, we could try stopping all abx by the start of summer. Our LLMD doesn't think the Tindamax will create a huge issue for my son. Besides the Lyme, he is a very healthy child and hasn't had any issues with detox so far. I've come across many unpleasant Tindamax stories and it has started to make me a bit nervous. I've heard detox is key. I'd like to be as prepared as possible, so I'd love to hear your recommendations and advice! Just in case anyone is interested, here's what we've had great success taking since the start of our treatment: FloraMyces (am) Metagenics UltraFlora Synergy (pm) Vitamin D- started with 1000 up to 2000 Multi-vitamin Nordic Naturals Children's DHA Thankfully, we've never had a yeast issue using this combo of probiotics. Once we go off antibiotics, our LLMD plans to work in some naturals for awhile. I know she uses something for biofilms too. Thanks!!
  12. Thank you all for the responses. We've decided to add a dental cleaning every 3 months. Hope it helps!
  13. My DS7 started treatment for Lyme last month and has been taking a combo of Zithromax and Omnicef for the past 5 weeks. Prior to that he was taking Amoxicillin for 6 weeks. Last week he had his regular 6 month dental cleaning. The hygienist was really surprised- many of grooves/cracks in his molars were brown (she referred to this as staining). There were also a few flecks of "staining" on the fronts of a few other teeth. My son has always had stellar dental visits, so this was a surprise to us all. I felt pretty silly for not noticing this before, but he is really good about brushing his own teeth and he is currently missing his front two teeth, so you can't see much head on. The hygienist spent a long time working on his teeth, but she basically just scratched the surface trying to remove these stains. My son was getting restless in the chair and time was up. Both she and the dentist felt the "staining" was from the antibiotics and they suggested we come back every 3 months for a cleaning. They also suggested we brush his teeth right away after every antibiotic dose. Has anyone else ever experienced this? Any tips or suggestions? Does this only happen with liquid antibiotics? Thanks for reading!
  14. Hello. My son (7) has not been officially diagnosed with anything at this point. We are just starting our journey. My pediatrician did prescribe 3 weeks of Amoxicillin on Wednesday afternoon. A head/neck tic that he is currently dealing with has gotten worse again today. It was pretty severe last weekend, better during the week, but worse again today. Could this be associated with the antibiotic? He's just taken 4 doses so far. I spoke to a friend today who suffers from Lyme (so do her husband and daughter). After describing some of my son's symptoms she feels strongly that it could be Lyme. We will start down that road next week. Does anyone else experience tics with Lyme? He has not had Strep (that we are aware of) and a Strep titer came back normal. He's been very healthy until a few months ago. Thanks for reading!
  15. Hello! Thank you for taking the time to read this post- it's my first! Here is a quick background on our situation- 7 year old son who started showing signs of anxiety and OCD at the beginning of the school year. Came out of no where. My husband does suffer from mild anxiety. Started with an eye tic that has come and gone twice. Usually lasts about a week. No family history of tics. Was told it was most likely a transient tic. Currently dealing with a head/neck tic . Started very mild, but grew into vigorous shakes, usually 3-4 at a time. He was shaking on average 20 times per minute over the weekend. Things have started to die down quite a bit. Now that I think of it, he probably has a couple other minor tics too that just aren't as noticeable. He has been working with a local psychologist for several months to help with the OCD/anxiety and she has been amazing. Lots of progress here, but still a long road ahead. Taking Kids Natural Calm multi with magnesium on and off for several months. I have become diligent in giving this to him everyday since last week. On Friday we had a blood test and ruled out PANDAS. He has never had strep throat and has always been pretty healthy. He was diagnosed with very mild asthma at around 4 years. He only had a couple attacks and only when he was sick. He has not shown any signs of asthma for well over a year. No allergies that we know of. Here's what I have done so far- I have an appointment with our pediatrician tomorrow. He typically takes a pretty natural approach to things so I am interested in his opinion moving forward. I do want to keep him in the loop, but I don't want to just "wait and see." He has already tested my son for possible neurological issues in his office and we have found nothing. I would prefer not to see a neurologist at this time. My son has a appointment with my chiropractor next week. This will be his first visit. I already use natural cleaners and very little chemicals in the house. I am researching how to take this a step further using advice from the book. My question to all of you who have been on this journey for awhile... Where should I go from here? I feel like the next logical step would be to look into a food sensitivity or allergy. Should I get a referral for a pediatric allergist or would it be better to start with a naturopath or environmental doctor? I am also interested in nutritional supplements. Should I start ruling out certain food groups on my own, starting with dairy and wheat before having tests? Can anyone recommend a practice or doctor in our area? We live in New Hampshire, but we have close access to Massachusetts and Maine. Thank you for your advice. It will be greatly appreciated!!!
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