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Tnmom last won the day on March 10 2016

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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 t want to wait.... When you started rifampin were you still having significant mood issues or not? We are much better mood wise and slowly improving on doxy cognitively. Did rifampin seem to help cognition too? Sorry for berating with questions. But feeling in limbo. Wish I had three more weeks of summer but we don't. .
  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 have always been neuropsych in nature....she has never displayed much physical symptoms at all. My main concern apart from Lyme has been bartonella.....so we are on and continuing to add to- buhner protocol for lyme. bartonella. and myco (she had high IgM titers in jan/16 for myco....) Her LLMD just NOW is suggesting adding Rifampin...... I thought this should have been part of her protocol from the get go but he is suggesting it now. Here the question- she is doing really well MOOD wise currently on JUST Doxy.....her cognition is SLOWLY SLOWLY improving.....she still freaks me out during regressions where she (9 years old) can't remember the days of the week for example....but it improves.....but cognition and short term memory are still her strongholds...... I don't want to screw up her mood )))) at this point she is not displaying mood issue..... Rifampin is chock FULL of dyes and crud.....I am nervous about that..... Does anyone have any thoughts or input on whether Rifampin is worth the effort??? What is your experience??? I know we will ultimately make the decision but I always get somewhat fearful before introducing a new med....not herbs...but synthetic meds.....go figure?? OH BTW and FWIW and any other acronym I could think of....school starts in 5 days...dum da duhhhhh thanks!!!!!! Robyn
  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 doing them. So my husband (we are both MD's) I don't even like saying that because despite having that title after my name I feel like I have been enrolled in the most intense medical class and have learned MORE from people on this forum than most ALL the M.D.'s I have talked with. I also don't want to be held accountable for medical advice…..I really don't have that much to offer anyways!! My only benefit I suppose is that other physicians have to give me some attn and not say Im insane (at least not too my face)??!!! But I digress- my point is my husband is a doctor too and this makes decisions quite sticky. I am open to herbals, I feel that mold is a factor, I am learning a TON about methylation and he is on board really only now with that Lyme is a real diagnosis (that took over a year but he IS on board and for that I am grateful). He likes this doc in NY- Im underwhelmed. He put my DD- on just doxy…..didnt mention biofilms or cysts. she is very sensitive to abx so maybe he will do more and just wanted to see how she would tolerate this to be safe so maybe I need to be patient…? tell me this is a marathon and not to be frustrated? I have added serropeptase (I feel I am misspelling that) and am considering adding grapefruit seed for a cyst buster for kicks…maybe…..I need to make sure she is detoxing well first. She is miraculously doing ok on doxy- should that concern me she is not herxing more- mild MILD at most… but I think her supplements are helping? and again doxy is metabolized mainly through the gut not kidney/liver….I just keep thinking - are these things all hanging out in cyst form now?? agh... -thoughts on doxy solo - what do you do for detox- I have looked into burbur and pinella- does that really help? I would love for it to help her short term memory issues…. we do lemon water, vit. c and many toxic mopping supplements, probiotics, digestive enzymes…..I guess I wonder about liver and kidney detox specifically. 2. I am concerned about how she got this- maybe from our 16 acre farm running in the tall tall grass barefoot….OH MY WORD what were we thinking???? or from me???? so I have been really fatigued for a long time- thought it was concern about DD's issues or/ and having 3 kids back to back. Had a miscarriage 2 years ago in second trimester and recently with darn muscle aches and joint pains- what??!! tinging in feet, lightheaded, a need to lie down….agh but it all comes and goes and is worse when I slip up and eat gluten and around my period…..so I got the lyme test and I think my sweet and really supportive despite his hesitancy on LYME is going to croak Here are my results and tell me what you think??? I have 2 other boys and see things now that makes me wonder for them- 6 year old- more tired, groin pains and occ stomachaches but other wise does BRILLIANTLY in school. 4 year old- some irritability but NOTHING like the daughter and processing well. thoughts? My test: (I did not do confections to save money…will reconsider) IGENEX IFA- neg IgM-Igenex and CDC neg 18 + 23-25- IND 39 IND 41+++ 83-93+ IgG- Igenex and CDC neg 41++ 45+ -Thoughts on it? - would it be worth repeating after abx if you EVEN thought it was suspicious?? - I will not hold anyone accountable but I do value GREATLY your input. 3. I want to add herbals to DD and possibly(likely) start myself- looking into Buhner- reallllly like what he has to offer but he says to do tinctures for kids….DD has corn/wheat allergy….rowing mom I think (if you want to give input PLEASE DO!!!) you made teas out of the powder on some? I am a retard so can you tell me HOW you did that? Like boil water, steep for x amount of time….did you add it to a chamomile tea or did the kids or you just chug it down?? I think the main reason I haven't done herbals is because its taken a ton of time to wrap my head around it AND the method of intake,……I may consult an herbalist but would love your input….really wish the LLMD we saw would just DO the decisions for me (I lie) ….I guess to have dialogue about what to do would be great (I think I will always have my hand in this somehow…. - herbals- method of taking for kids….. - which herbals are best for Lyme- would you do ALL the suggested or just knotweed and cats claw?? Or add according to her main symptoms- neurocognitive……would you add bartonella to the mix or do Lyme first/bartonella second…if I mix it seems like a ton of herbs??? again I prob should get a consult…. ok thats it for now- I am indebted to this forum and moms that never give up. Tnmom
  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 -gad! And unfortunately our church(which is actually our kids school) as being a source of mold. Did you do an ERMI test? If so, do you do it yourself?? I can just see me sneaking into church with a vacuum or such to get samples.... And I would! 3. We did 23 and me.... Does anyone know if I can get HLA genes off of that??? 4. I would assume a leading ILADS LLMD who does extensive research would be aware of mold right?? But I'm done assuming.... Did your LLMDs know about this....I'm sure llm yours did. ... That's all my questions and if you don't know- no worries!!! Grateful
  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 tell me what you wish you had done different- what you are glad you did- did your kids get better on abx despite having chronic lyme…..i have to start SOMEwhere and don't want to do nothing bc of fear- hence we made an appt. ….. I think Im just realizing this is the start of a long journey and its ok to doctor shop and to JUST START already!! So- questions- give me hope here!! Give me insight into your kids- especially if they had CHRONIC Lyme and how you treated etc…. I can get into Dr. C and am able to see Dr. J in Washington DC- have not made that appointment yet….have to discuss with the hub man- who is an MD and quite picky…. Dr. J- we would see the Nurse Practitioner……she does the peds….anyone seen her and how was it? anyone use Dr. C???? Thanks for your input- SOOOOOO appreciate this- and i thought getting a diagnosis was crazy???!!! I will be back….dont worry…… SF mom I would LOVE your input- I tried to PM you but it won't let me?? Thanks!
  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 exact ones... This has happened like 6 times. So I do trust her insight to a big degree. My question is this if my DD had acute Lyme I could definitely see hard aggressive antibiotics. She is not acute. She is chronic. Minimum of 1 year maybe up to 5. Maybe congenital. That thought frightens me! But I regress. What's your insight in CHRONIC Lyme. Neuropsych Lyme and aggressive antibiotics vs herbals. I really am interested in any thoughts. I may post this on a new post since it's a different thread depending on response. I am learning how this forum works and I don't want to monopolize each entry!! After your multitude of doctors visits is there anything you would have done different if you could? I am trying to figure out which path to go down. My husband is OPEN and willing to see dr Daniel Cameron They will fit us in. I am trying to figure out what to do. Insight into him? Anyone seen him? He usually takes 10 and up. I am certain he will be aggressive abx. Thanks
  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 someone open to herbal therapy as well….. yes, its a huge checklist…..its been a long road to get hubby on board and it finally seems he is so this next step is important. Open to anywhere, USA. Open to suggestions of how to get specific NAMES Please PM if need be for privacy... Very confusing, lonely time but know we need to find a good LLMD quick. thanks to anyone who replies and to all of you who have been on these forums for years- sharing stories is what opens minds to an expanding differential diagnosis and ultimately to some of us (MY DD) getting the right diagnosis…. now to get some treatment….quick. Thanks
  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 people as well as direction on how to obtain names that people recommend… I don't mind PMing if its a matter of privacy. I have obtained 3 names for TN- this is where I live but I WILL travel out of state rather than go to someone who has LLMD title yet does not have depth of knowledge on the subject. ANY direction/advice is greatly appreciated. I definitely am looking into herbals in meantime…. thanks
  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 with azithro for 1 month post the first test…. as well as valcycovir for EBV (that was a DOOZY…major reaction to valcyclovir) all other co-infections have been negative to date. We sent off the Igenex 31 epitope- Positive. SO I am pretty confident its Lyme…well I was before…husband is on page now... OK- my husband does not trust many people- high suspicion. He liked Dr. T because he didn't seem to treat to make a buck and is John Hopkins trained MD. so my husband doesn't want to go see just anybody to treat our daughter. Nor does he want somebody who sees a cold and screams LYME!! He wants an honest, good, well trained MD…. ANY SUGGESTIONS???? You can PM me if need be…... I am open to herbals as well as abx if need be- we are very cautious in what DD is given- she has COMT ++ and many cytochrome P450 errors and does not take to synthetic meds well…..abx or NON abx….. so my question is this, can you direct me to someone you trust to treat your child.….I need help. thanks so much! Verryyyyy thankful for insight and help!
  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 and neurocognitive decline- processing problems, learning issues, visual and auditory issues and did I say mood swings???? We have done genetic testing- 23 and me and yasko and she is COMT +/+ for both alleles….we have done testing for vitamin deficiency etc and she was deficient in ALL b vitamins….doing supplementation etc for this….much improvement yet I always wondered about LYME…. So the results are here: thoughts? Can Lyme be ONLY neurocognitive…..she doesn't have ANY fatigue or joint pain….its all shoulder and up….if one of her IND from her IgM were + and not IND she would have been positive and if the 39 IND was + she would be CDC positive….. we live in TN- any good suggestion of LLMD? IgM- Igenex negative/CDC negative **23/25- IND **31- IND **39 - IND **41- + 58-+ **83/93-+ IgG- Igenex- IND/ CDC- neg 28-+ **31-+++ **39-IND **41-++
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