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  1. thanks for the input- very solid and appreciated. I feel much better about waiting a few weeks into the school year prior to starting. Great advice and not sure why I didn't think about that?!! Really appreciate this forum and input from others who have and or are there....
  2. Thanks for the quick replies. If you don't mind..... How was the reaction to rifampin? Your son got better.... Did he herx significantly on this? I wish we had a normal school schedule but we are almost year round here and I am a wee bit nervous about starting this since school starts in 1 week. She is already repeating the same grade and will be with a new group of kids and with her mood being so good right now I want to give her the best opportunity to make actual connections socially this year. It's the first time I can see it happening in years. Then again, if rifampin helps so much I do
  3. Hey Everyone, Sorry to bug again but I have a quick question.....does a quick question exist??? We have been busy this summer treating our daughter for lyme and have had much success and are extremely thankful for the progress so far. I am always hesitant to start medicine for she has had some bad reactions in the past- namely azithromycin and Valcyclovir. we with trepidation began doxycycline and have been on for 3 months and it has been nothing short of amazing. Her mood is about 95% (apart from a 4 week cycle of regression that sends me into PTSD but she comes out of). Her symptoms
  4. Hey If you are really concerned about a tick bite being lyme I would process the tick through igenex or other lab rather than bay area lyme. We sent a tick s/p it imbedding in my sons neck to bay area and despite emailing and calling and over 2 months passing I have not heard a result in return. I may be an anomaly but if you are TRULY concerned rather than merely curious (we were curious…..it was a dog tick and we live in TN and we are treating for Lyme via herbals regardless) I would go through igenex. just my two cents
  5. Hey- I tried to add a bit in my signature line but I am sure I am missing something. 1. Lyme follow up- saw a LLMD in NY area- he was not very open to mold (forgot to put mold exposure in signature line ) or herbals and Im not sure how much he is considering bartonella.….he thought mold was not as much an issue unless Lyme was causing one to become super sensitive to it….whatever- I know I will keep it in MY differential as far as causing neurotoxins….and plan on addressing it in the future if Lyme treatment isn't complete…. herbals- he said he doesn't do herbals but is fine with me doin
  6. to answer some of my own questions in case another person reads this no i can't find results via 23 and me for HLA sub typing for mold specific markers Yes labs run through quest and sent out to a special lab - national jewish laboratories…or so I read I have read a great article by Chris Kessler in regards to mold sampling... https://chriskresser.com/5-things-you-should-know-about-toxic-mold-illness/ I hate that we did air sampling--- we have since moved so I will never KNOW what mold it was or what was missed but really it doesn't change our current direction….
  7. Well I now have an official reading assignment for this weekend:) Gladly accepted! Questions: I apologize in advance but am extremely grateful for direction. This may be a big part in some peoples not getting better despite abx....etc....all input helps and like I've said before this forum and peoples stories is what got us to this point in the first place. Thanks. 1. In regards to lab work up for mold I am looking in surviving mold website and see a number of labs to order..... Is there a particular lab this must be tested through? Quest ok? 2. I am suspecting my car actually
  8. Thanks for replies and input. Great advice. On mold- we had our previous home tested before moving. My DD itched all the time and it was positive for mold. Great. Just great. But seriously, we built a house and are in it and examined every part of the building process so thankfully for now it's not an EXTErNAL issue at HOME. But can I ask what you did to check internal mold? I have heard of shoemaker.... Need to look into that more but curious what your LLMD(I assume it was the LLMD?) ordered or did to look into mold and what was done to treat? Thanks so much.
  9. OK- Just starting out on treatment end- daughter diagnosed with Lyme. Have appointment made with Dr. C in mount kisco….he usually sees 10 and up but thankfully is seeing my 8 year old. So I know my DD does NOT tolerate med well- I feel like a broken record- we have gone through methylation routes etc with genetic workup and supplements etc….. I am open to herbals and will do regardless of abx protocol….. Have read differing opinions on chronic lyme- she has had this 1.5 to 5 years or more….. about abx and immune system etc…. I DONT WANT TO DO NOTHING BECAUSE OF FEAR…..!!! Can you
  10. Ok here I go again. So very thankful for replies and even phone conversation. Thank you! I have been seeing someone to work with supplements for raising immune function/ genetics/ methylation and she is very cautious of us going the aggressive antibiotic route for DD immune system is not strong enough. She recommends getting things more primed and then doing natural herbals etc. the lady is super intelligent and everything she has said has corresponded with my experience. I.e. My DD can't handle certain forms of vitamins and when I got here rec based off genetics she told me to avoid those e
  11. sorry to start a new post for this but I was wondering if someone could give me insight in how to find a reputable/knowledgable LLMD- I am concerned about some not having depth of knowledge- or not treating co-infections. AND or being incredibly expensive WITHOUT spending quality time with patient…. we saw Dr.T for PANS- he is not lyme literate but open hence looking for LLMD…..he was expensive- to a degree- but INVALUABLE in his care of patients and thoroughness…. we are looking for a LLMD along this lines. I have contacted ILAD for TN Physicians and I am not completely sold. I would like
  12. Thanks for reply, I have read Buhner and his co-infection book as well as Horowitz. the situation I am in is that since my husband is allopathic medical doctor he is reluctant to send daughter to anyone- he has mistrust of some allopathic AS WELL as LLMD's….….it is so difficult to find good reviews on physicians. my husband wants an MD…. I prefer someone who will include herbals and be willing to be somewhat holistic…and to be open to con infections/mold…. he has gotten Daniel Cameron name….I am super confused as where to go… looking for personal experience and suggestions as to specific peo
  13. Hello again, so I want to give a little background. My husband and I are both in the medical field. My husband is finally open to Lyme since we did the Igenex test and my insistence that he read the articles I read! We have done genetic, methylation/sulfuration etc testing….a whole slew of things…we eat organic, cf/sf/gf for years, did shots- no more...…blah blah blah… ( i need to make a bio like rowing mom did - thats a great idea ). We have tested co-infections. she had a bartonella 1:64 titer- indeterminate or equivocal in past year3/15….negative with Igenex2/16- we did treat wit
  14. Hey everyone, Lurker for a year. Been doing much research and supplements/meds for daughters Pans symptoms (age 8). Not sure when it started- our story is not as clear cut because we think it started at age 4. Have always wondered about Lyme ….anyways, treated for coxsackie and EBV and ?bartonella- 1:64 titer yet that was with Dr. T- and it was only azithromycin for that at the time…..Lyme panel was - except for 41 via Quest. My husband is finally open to Lyme consideration but really wants HARD evidence (agh) and I finally did the Igenex test……. Daughters MAIN symptoms are mood swings an
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