kmom

Thanks. I also found an old post of yours about Ketotifen. Does that work similarly to Benadryl? Is it better? If DD didn't get Lyme from me congenitally, we think she got it when she was close to turning 3 years old. I possibly got exposed then too. I was 8 months pregnant w/ DS. No known tick bites but we had just moved and ticks were found in the house after moving in and found one engorged one on the dog. I know DD's peanut and tree nut allergy started within the next couple months to a year. And within the next 2 years I had carpal tunnel surgery, trigger finger release surgery on 2 fingers and a sudden gall bladder attack and gall bladder removed. When PANDAS/Lyme symptoms started in May 2010 for DD, her allergies were so bad. Sometimes just very swollen nasal passages to the point she couldn't breathe through nose but it wasn't stuffed w/ mucous...just swollen. When Dr. B did her environmental allergy test, she was severely allergic to many allergens. We were also surprised by her food allergy test. She reacted of course to nuts but also squash, watermelon, mustard. So histamine has seemed to play a major role in all of this as I reflect. Does it seem possible that once Lyme is under control, she may not have a nut allergy? That would be amazing b/c her OCD that has crippled her since May 2010 is all about nut contamination. What a crazy vicious cycle if Lyme is the root of all the evil! Thanks for all of your amazing info!

Thanks for the valuable info!

DD started Rifampin 2 nights ago. She hasn't been herxing as bad as her brother. But today around noon she accidenatlly got poked herself in her eye and pain can set off her meltdowns not to mention, she was due to eat lunch within minutes and hunger too can make meltdowns worse. She has been complaining her ears hurt lately. She has tubes and on abx so not thinking it's an ear inf, rather from Lyme??? So as she started to melt she told me that her ears have been hurting so much. I got her in a detox bath to help bring down the meltdown symptoms. She kept crying, saying her ears, eyes and mouth/lip area hurt. I got worried b/c her eyes looked puffy and she was scratching. I didn't seen a particular rash but she was scratching her chest area. I spoke w/ her LLMD and he said it sounded more Rx reaction than Lyme herx. I thought the histamine thing can happen w/ Lyme though. Anyone ever experience this? B/f we had Lyme Dx, she was taken off Zith, went backwards within 4 days, put back on Zith on 4th day and 2nd day after that, she had puffy swollen eyes which reminded us of an allergic reaction but didn't think much of it since she has allergies. She's been on Zith ever since and never reacted again. Till today. I gave her Benedryl and she's fine now. But so scared to take her off the Rifampin since it's targeting Bartonella but scared to keep her on it if she's allergic to it. The LLMD said take her off to be safe. But I have those feeling in my bones that have gotten us to this point and not an institution and I can't help think it's not Rifampin. Just dawned on me. She started Diflucan too. That she takes AM and PM. So she had that this AM unlike the Rifampin. Anyone ever have a reaction to Diflucan?

oop!

Oh my, kids started Bactrim last weekend for Bartonella and they started herxing but within 2 days they were reacting to the sulfur. It took 2 mores days w/o an abx to target Bartonella before seeing specialist and getting a new abx. Started Rifampin last night and the rage is coming out of my DS very often! What an exhausting day. I gave him charcoal midday. He also got an epsom salt and hyd. peroxide bath after dinner. I have bentonite clay liquid that I haven't tried. Do any of you ever do both in one day? Best to give bentonite clay at night? Our LLMD wasn't big on the detox but I have read so about how important it is.

Very interesting and very sad. Knowing what I have learned the past few months, yes I'd want to check for Lyme & co-inf's and anything else imaginable--metal toxicity, vitamin levels, antibodies, you name it, rather than take the psych dx. Oh that makes me so mad. When I spoke to the ILADS rep for my area, she said she was a retired psychologist and she said, "Mark my words, most mental illness has an infectious trigger and Lyme is definitely one of those to really check into immediately."

Yes, we happy that we saw this LLMD and yes Tpotter has been mentoring me and I am forever grateful. Dr. B. has us do Igenex Aug 30th. We have Blue Cross PPO and supposedly they are applying it to the out of network deductible which we met a long time ago but they are so slow to give us our 70% back on out of network stuff. The local (new to field) LLMD who saw just my DD did a bunch of tests thru NJ Diagnostic Labs. Takes 2 wks to get results but won't see us until Dec. 16th to discuss them. Going to try to just get results w/o an appt since I don't want him treating any of us. In meantime our GP had DS and I do similar tests. I had no idea that Lab Corp needs to do the CD 57, not Quest. Not sure what Quest & Lab Corp. will charge as far as labs but I think ins. will cover or partially??? Oh and yes we did Bartonella thru Quest but no other co-inf. I would have liked to in hindsight but rep from PA Lyme.org told me about Quest Bartonella test day after we did labs. She urged me to call my GP to call Quest and tell them to use the blood they should still have to add in Bart test. They did it but only Bart test. I was desperate when GP ordered labs and he kind of went along with what I said DD had tested thru local LLMD. Our GP is super willing to help and learn but not an LLMD. Heard from GP today and WB and Bart are neg. So far we're going off symptoms and both kids' postitive Igenex IgG Bart results (very high but neg. IgM but LLMDs are saying treat the high IgM on Bart). The kids had pos 41 and IND 39. I wish I had done Igenex now. I started Doxy last night. I didn't sleep well. My mind was racing while sleeping??? I know doesn't make sense. It was weird. This AM I ate cereal and 1/2 banana and then took Doxy a little later and about after an hour, I got light headed when I stood up and then started dry heaving and eventually running to the bathroom to revisit my breakfast I went on Doxy a few years ago from a dermatologist and handled it well. The mg's are doubled but do you think it's herxing or reaction to meds. DH was worried I didn't eat enough breakfast and the Doxy made me sick. He didn't think I could herx after 2nd dose. My kids do from their one dose of Bactrim last weekend and since reaction and stopping for a few days and switching to Rifampin last nt, kids are herxing today...DS worse than DD. Charcoal seemed to help him. Gave my DD a headache the one time she took it so she's scared to take it again. All I know is that I am chilly, hands and feet are freezing and I feel better when I just sit still. Still have a lot of popping and cracking. Just breathing a deep breath, my back cracks. Knees lock up and pop too. If it's Lyme, will this popping and cracking get better w/ treatment or is it just something I'll always have. And if herxing, any idea how long this lasts? Happy Thanksgiving! Wish I was hungry to want to eat my dinner. I have to eat so I can take another dose of Doxy.

After visiting the local LLMD who appeared my town back in May of this year and not being super impressed (little experience/make a quick buck) after DD's consultation, I continued to search my tail off for another Dr. who could see my kids and me. Thank u Tpotter for your help! Drove down to MD yesterday and all 3 of us were seen! LLMD reconfirmed suspicion of Lyme and Bartonella from Igenex results and symptoms. He was the most logical, organized(didn't rush us) and informative Dr. we have seen since PANDAS symptoms started. He kept kids on Augmentin and Zithromax and switched out Bactrim (fam dr. started kids on last Sat. but by Mon. allergic sulfur reaction happened in both) for Rifampin. He also Rx'd Bicillin shot 1x/month...anyone know cheapest pharm to get them? CVS said Blue Cross won't cover it for us. We didn't have the latest tests back but had some faxed over. All 3 of our vit. D levels are LOW! He wants us on 5000 units of Vit D3, tons of probioitcs (which the kids have been on), added in Diflucan for yeast and help w/ Lyme...loved that he explained it all so well, wants a metal toxicity test done...hair test for kids...urine test next time for me b/c I have highlighted hair...IV nurse was gone for day or he would have done it on the spot...injected me w/ metal binder and then tested urine for next 12 hrs. My Quest WB was neg...surprise surprise. He listened to my symptoms and scolded me gently for getting a flu shot. I explained how immunologist said I needed to be healthy for my kids. I have had symptoms that could point to Lyme but man since that vaccine 3 wks ago, I have major joint/deep bone pain, sole of foor pain and the brain fog. He said he wanted me to redo the CD 57 thru Lab Corp...did it thru Quest and not the right test. Also wanted me to get Vit. B level checked. BUT he Rx'd Doxycycline for me. He had me fill out a form on symptoms last night when I got home. After a month of abx, he wants me to fill it out again. It's a neat chart that scores your symptoms and divides them into Borrelia, Bartonella and Babesia. My Babesia symptoms are minimal to non existent...Borrelia and Bartonella score high as suspected. I went to Lab Corp today to get blood work and then went to pharmacy to explain the need for new meds. I always feel like a drug dealer for my kids and like I need to justify to the pharmacy why I need the meds! Isn't that crazy! But 3 abx's and 1 abx shot and Diflucan and Oh, by the way, "Guess what pharmacist?! I now need treatment!" The staff was very nice. We've gotten to know each other quite well since May! At least when I say Lyme I don't get the same weird look I always got from PANDAS. Speaking of PANDAS...I've heard conflicting reports. Kids' Cunningham tests are positive so I heard from a VERY reputable ped. LLMD on a ph. conversation to continue IVIg if Cunningham tests are positive. Dr. yesterday wasn't gung ho over idea. Any advice? We're scheduled for IVIg #2 in a 2 wks. Any advice?

This is the Dr. H in Hyde, NY. Could you PM me if you know, please?

Thanks for the advice! Yes, the last thing my DS needs is something to bind him. I gave him a charcoal pill for first time this afternoon and he handled it well. Rages weren't happening either the whole afternoon--coincidence??? Don't know but I'll take it b/c since Bactrim added, RAGE is happening too often. I was told 2-3x/wk but I'll start off slow! Real quick what is ALA?

Thoughts and prayers are with you. It's tiring being the strong moms through this. I often worry about the effect on my kids' livers, especially since my mother-in-law died of liver failuer (yes, alcohol involved) and her mother died of liver cancer. Still makes me worry. The kids drink lemon water which I hear helps detox the liver. Maybe you can voice your concerns to your doctors. If you get any info, please share!

Just wondering how to best juggle all the meds, supplements and detox agents. Kids take 3 abx's @ 8AM. They take them all together and thinking that's ok??? Then I've been waiting an hour or 2 (or after school for DD)to give multi vitamin, vit. C and Omega 3's. (Probably need some vit B6 and who knows what else but we'll get there.) Then give probiotics after lunch and 3 abx @ 8pm. Now that we have the 3rd abx for Lyme, I want to detox. Bought activated charcoal, liquid bentonite clay and parsley pills. Any advice how to add them in, which ones you think are necessary and when? I read to keep charcoal and bentonite clay a couple hours away from abx. Also, they take epsom salt and hydrogen peroxide baths and there's something magical in them! We're herxing bad since the Bactrim was added for Bartonella and baths are my magic potion. Is there bentonite clay for the bath or did I misread something at some point? Thanks!

Hi Mary, Seems like all the worst symptoms times and brilliant ideas that involve dr's help/input happen on a Fri. when Dr. B is closed or Sat., when it's more diffucult than normal to get in touch w/ him. Altho, 2 wks. ago on a Sat. afternoon when we realized the downward spiral of events 4 days post removing Azith from list of meds, he Rx'd Azith immediately. I think the receptionist knew by the sound of my voice, that I was feeling desperate. So I gave it a whirl and she suggested I email, nurse prints email off and hands him question on Monday. I said ok/thanks and moved to plan B. Called family Dr., the D.O./DAN dr. and left message on emergency line...1st time ever but as I watched my kids one by one cry w/ knee, hip, arm pain today, I wanted that Bartonella Rx. He called back in 5 min and after I explained everything, he was right on board. He's so great. He always asks I keep him in the loop on everything b/c he not only cares about my kids but say she wants to learn more and help others. Now that's a great Dr! Rather than my ped docs who used to say GROWING PAINS. I told the grumpy old ped. Dr. one time (when we only had joint issues--Pre PANDAS) that my son really isn't a complainer so I'm concerned. He said, "Mom, he is a COMPLAINER or you wouldn't be here!" I was furious. Needless, left them and we all see the family dr. And he has been great joining my family on this journey. As good as our family Dr. is, I agree, we need an LLMD. I know Dr. J is getting up there in age which is so sad. I asked the ILADS rep yeterday why he doesn't have a dr. working under him. She said he is very open and allows other doctors to study him for a week or two so they can learn but no other dr. in his office. My mom and I pray he's available to help formally evaluate my kids and give insight, but yes, I need another one. We're on Dr. H and Dr. C's wait list. I also got 3 more names from the ILADS rep.--one in Towson, MD, one in Jackson, NJ and another near Lancaster, PA. I called all 3. Left mesages for 2 and the last one in PA is having knee surgery in a month so is out of commission for a while. Another mom on forum has helped me and gave me name of another one that's drivable and have heard great things about him. To IVIg or not to IVIg is the golden question! Immunologist saying get tonsils and adenoids out and do IVIg. (NOTE: Dr. J office suggest if/when T & A happens, send them to Clongen Labs to test for lyme bacteria--was planning to get strep tested but thought that was good idea in addition! Lyme hides in tissues so having that info was valuable! ) I have to figure out IVIg still. Referral to local LLMD was from a friend/pediatric internist. His wife is a dr. too and they are so kind and give advice whenever possible. They too want to learn thru our experience. They agreed LLMDs are hard to come by but had heard the name of the wellness center. I wonder if it was run by another dr at that point??? Dr. friend was very honest and said he didn't know the guy but it was worth checking out. Websites can be deceiving, as his looks fantastic. I think I would have done more research like I usually do but I was enthralled by the fact he was 2 min down the road. I visited the practice to drop off paper work ahead of time and was impressed. But all that means nothing if the dr. isn't experienced. He did mention a few IMPORTANT fact that helped us. One being, "Hey Katelyn's IgG for Baronella is positive." I was floored. I didn't know. So to me that answer was worth the $315 paid. Plus he ran some other tests we hadn't done which is always a good thing. The baby steps thru this journey are incredible. Thank you for your help. Your experience and advice is always so helpful. The more we all share, the more we learn! Kristie

Yesterday, I spent almost all day in pj's b/c I felt terrible. Ever since my flu shot 2 wks ago (I know, dummy me, but I was advised by PANDAS dr. to do it so I'm healthy for our kids). Since 2nd day after shot, been feeling achey. And past few days have gotten a lot worse...popping/cracking joints, pain in: joints, bottom of left foot, veins in wrists, wake up w/ ear canal pain and sometimes a burning throat but I don't feel like I have cold or sinus inf....not even a runny or stuffy nose. But my from arms to shoulders yesterday felt like they weighed 300 lbs. With free time, I left message w/ Dr. J to kindly remind that I'll be there at a drop of hat if cancellation appears b/f our Feb. appt. I did the same w/ Dr. H and added my name to wait list. Then contacted ILADS.org in hopes to hear of another good LLMD to see sooner. Local one I took my DD to was a bit quacky. Sat there feeling like I knew more than him which isn't a good sign! He kept saying he'd run a PCR, but DD on abx's since May and thought it would be neg. He agreed but 2x more said he'd do the PCR...frustrating. There were other red flags which made me believe he only dealt w/ clear cut Lyme cases. Certainly didn't leave feeling enlightened and whatever his receptionist/wife had told me about him knowing PANDAS, didn't seem to mesh since he seemed surprised she was on long term abx for PANDAS and was wondering when she'd get off of them. I realized after appt I'd never spend the $ to have this guy check out my DS and myself in Dec. as planned. Decided to talk to our GP,a DO/DAN dr. and very helpful. He ran the same tests and more on DS and myself Thurs. When he asked which LLMD saw DD, he responded, "Dr. X is treating Lyme now???" He seemed surprised. After researching more, he's a DO who has run a Methadone Clinic, Addicted psychiatry office and now a "Lyme specialist". No wonder the practice was new to town in May '10. I now think he bought the practice/name and just started treating Lyme in May. Dr. J's receptionist or nurse (not sure but seemed so Lyme smart)called back last night. I explained how after receiving copies of Igenex test, I realized kids had some positives that didn't sit well w/ me and that since zith and IVIg, the kids have had a rough time, especially w/ new joint symptoms and quite frankly I'm so confused I question if they ever had PANDAS, is it Lyme ,etc. She asked me a bunch of lab scores. She said Band 41 being positive alone isn't a reason for concern. The 39 IND bands are interesting and retesting may be best bet. BUT when I told her IgG Bartonella Igenex score of 1:160 for DD and 1:80 for DS, she said, that is very important and needs to be addressed ASAP b/c Bartonella IgG pos, altho means past inf, is good enough to mean present infection. She said they don't see too many Bartonella IgM pos and that they look at both IgG and IgM when looking into Bart. Her tone had completely changed from unsure if kids had Lyme to a "this needs to be addressed now" type of tone once Bart scores were mentioned. She asked their Cunningham scores. DD- CamK 187 and 2 of 4 anti-neuronal AB's pos (another one borderline pos) and DS-CamK 137 and 1 of 4 anti-neuronal AB's pos. If those anti-neuronal AB's are pos, IVIg is needed in additoin to Lyme tx. Their Augmentin is tx-ing the strep, zith tx-ing the Lyme (borrelia??? wasn't sure and forgot to ask) but you aren't tx-ing the Bart. She told me to call Dr. B today and ask him to address it until we see LLMD. Oh and when I mentioned I feel as bad physically as kids do, she said she's willing to bet I was infected or recently got infected in past year and the H1N1 in flu shot caused the symptoms to flare. It's so hard to know who to believe but I hear great things about Dr. J. Even when I contacted ILADS yesterday, they had a PA rep. call me and she was fantastic to talk to. She's a retired psychologist and has Lyme. When I told her I have an appt w/ Dr. J for kids in Feb she went nuts over how great he is and that I should NEVER cancel...even if I find someone good b/f then. So I'm off to call Dr. B. Let the fun begin!

While searching for another LLMD, found this forum and what seems like good info on LD: http://www.healingwell.com/community/default.aspx?f=30&m=1606610 It talks about body and foot bath detox--how/why it works. If you scroll down to bottom, all band #'s are explained.

Thank you all! I went to the local DAN dr. (Switched to him as our family practicioner b/c our peds treated kids like a #. No autism in kids but like this guys bedside manner.) Discussed sitation and he agreed...hold off, check Lyme tests and then later on if needed do surgery. He's a great dr. Has an autistic son and just is so willing to listen to situation. My immunologist is standing his ground saying DON"T cancel surgery but I did anyway. Well actually when I called asking how to cancel and explained situation, ENT was in full agreement to hold off till we know more. It's not life or death. So thanks! In the meantime, had DAN dr. run same tests on my DS and me that LLMD ran on my DD yesterday, actually he did even more for us. Funny thing is, we'll get results back faster. LLMD won't give me results till we return and he can't fit DD in till Dec. 16th. The DAN Dr. said 2 wks or less and they'll be faxed to me. Hopefully it will tell us something. In the meantime, all my popping and cracking in my bones that I've felt for a while feel more pronounced. Move my neck---crack, move my toes---feels locked, breath in a little deeper---back cracks, move knee---pop, pain in knee and near veins in writst. I've always said, well I've had carpal tunnel surgery years ago so no wonder wrists are starting to bother me again...I'm on laptop non stop w/ all this going on. I blame body pops/cracks to moving to cold climate in last year and not exercising like I used to. I find every excuse to make it all seem normal. I mentioned it to my mom and she said, "Well no wonder. You work 24/7 on fixing these kids. It's taking a toll on your body." But feel like I need to rule out Lyme. Are they sympathy pains? Guess I'll know soon! Any one ever wake w/ ear pain in one ear. It happens a couple times/ month and I say it's fluid in ear. Get a suddle sore throat many a days. Also, for the past year, I wake w/ crazy gurgling sounds in stomach like everyday. Never had that b/f. Hunger??? But it's a weird feeling. We'll see.

I know I sound like a crazy lady, bc some of you have gone on my journey finding an ENT willing to do T & A for PANDAS DS. DD dx'd w/ PANDAS after months of stubborn strep. Symptoms started after her T & A which happened to not be Rx'd w/ abx b/f or after surgery b/c we never new PANDAS was on horizon waiting to rock our world. About 3 wks after DD's Dx, DS has these wild symptoms. Seemed surreal. I was embarrassed to tell non forum members b/c it seemed ridiculous! Anyway, both kids have super low strep titers. Dr. B gave them 1st IVIg Oct. 20 &21 due to "specific strep immuno deficiency". 1 wk post IVIg Dr. says 2 things. Remove Zith from Augmentin/Zith combo AND DD needs T & A, preferrable b/f Dec. IVIg and writes a rec. letter so I can hunt down local ENT to do the surgery. Got an ENT to do it...thanks to a local forum member! In the meantime what I think is "turning back pages 2 wks. IVIg, starts to look really "LYMIE" for 1st time! Suddenly both kids have major setbacks and major joint pain and tingling. Feet, tips of nose, electrical pulses down forearms to hands, etc. PANDAS and IVIg? Maybe? Lyme too? I have this gut feeling. Waiting to see a top LLMD but yesterday got in w/ local LLMD for DD and it seems more likely b/c see her IgG for Bartonella is positive. Never realized! I looked over that test so much but Oh well. Check DS's and his was pos., even higher number. I even have pics of suspicious rash 2 days after Aug. '09 camping trip. Went to local DAN dr. today and he luckily is running same test on DS and myself as local DAN dr. But he's the pressing question. Do I still have DS do T & A tomorrow. Will things get even worse? Or should I wait for rage and other symptoms to settle down and wait for Lyme results. Contacted Dr. B but not convinced I'll hear from him by tomorrow. UGH!!! My gut feeling is wait on t & a. What do you think?

Thank u MARY! I feel so desperate as watch these kids fall apart. I truly believe Bartonella is the reason we have this huge change in kids. Question: DS is scheduled for a T & A tomorrow and I am scared now that's going to be a mistake? Any advice? Anyone? Postpone till after new Lyme tests? He never was the strep kid. He was positive by chance when we tested family. Will it help him in the long run or am I jumping the gun. Dr. B says take out. Got an ENT to agree to do surgery. I'm so confused as the time ticks to tomorrow...No pun intended!

Hooray Linda! Way to go. Wish I knew then what I know now. It may not have changed my outcome but I wouldn't feel like I was sucker punched each time the 3 PANDAS specialists said our ENT should have treated prophylactically w/ abx b/f and after T & A. We had finally gotten a neg. strep test 1 wk. prior and she had been on 3 rounds of abx to treat the stubborn strep. Without PANDAS symptoms to that point, I was happy when ENT said, no to abx for surgery and that it wasn't necessary. My son goes in Fri. for surgery. I hope it goes well. We have a different ENT. I told him Dr. B has him on abx already but I want it in IV for surgery b/c not sure I'll get his abx in day of surgery. Prayers are with you!

Update from my original post: Saw LLMD today...again wasn't my first choice but a stepping stone while we wait to hear back from a top LLMD. He only could squeeze in one of my PANDAS kids today. So after much debate, DD won the golden ticket! Dr. didn't dismiss the idea of Lyme as a possibility esp. w/ all the Lyme-like symptoms that have appeared since Zithro added to Augmentin combo and IVIg (all in last 2 months). He suggested more testing...different testing. One thing that shocked me was that I thought co-infections came back normal. Not as far as IgM. But he pointed out my DD's Bartonella's IgG was was positive=1:60 Dr. B went over it quickly when we reviewed a lot of test results 6 wks ago and all I heard was neg., which yes, it's a "past" infection. But then when I got home tonight, I looked up my DS's test and his Bartonella's IgG and it was positive=1:80 Below are the WB scores that made me question Lyme more. So isn't that STRANGE that BOTH kids have been exposed to Bartonella and have the same major neuropsych and joint issues? BOTH had same suspicious (not bulls-eye rash) bites from a camping trip in Aug. '09. If anyone has any advice, I'd appreciate it. I'm so on the fence now. We're scheduled for IVIg Dec. 8th and 9th and I don't think it's a good idea now that I'm learning more. Could the fact the kids were on mult. abx's since May skew the IgM results in general? The good news is, the nurse drew the blood right there. DD being tested for C6 Peptide, Elisa, SED and I suggested the CD57. He wasn't keen on CD57 but I said I have ins. and don't care if I pay out of pocket. I need answers and I've read some interesting things on CD57...better than Elisa. He also prescribed Low Dose Naltrexone. I've heard a few good things. Anyone have info to share on LDN? Thanks!!! DD: IgM=41+, 58+ IgG=39 IND, 41++ DS: IgM=41 IND IgG=39 IND, 41++

Good luck and get those non PANDAS boys on abx at least for and after surgery. My daughter's PANDAS didn't hit till after surgery. All 3 PANDAS specialists (including Dr. B--love him) said they can't guarantee it was the cause but don't like that my ENT didn't pre/post treat w/ abx. My son who was positive on strep culture when tested whole fam for daughter's sake was NOT symptomatic for strep or PANDAS, hence deemed the carrier. A few weeks after her PANDAS dx, he was dx'd too. He's have T&A surgery this Friday. Our ENT will biopsy but said he pretty much always finds strep or other bacteria in tonsils. Not sure if he meant for PANDAS, nonPANDAS kids or both??? I plan to ask him. Lots of luck!

Looking back @ DD's 1st Communion pictures last spring, b/f we suspected anything but mood lability which we chucked off to post T&A and bilateral tubes surgery, we remember her hair being very dull and her face looking so pale. I remember thinking maybe she's entering puberty but she was only 8 yrs. old and no other symptoms of puberty. It's just a distinct difference in smell. The LLMD's receptionist said to definitely mention it to Dr. tomorrow. I just can't wait to see him. Last night and this AM she cried and said she felt like something was eating at her temples/brain. I feel like everyday is that movie Groundhog Day...relive the same day, day after day.

THANK YOU ALL! Makes so much sense. So much so, feel silly I couldn't connect the dots myself. I think as the mom, I want to identify and compartmentalize symptoms so that I can attack and conquer them but I feel like the countless hours playing researcher and nurse should account for so much more progress. Thanks for clearing things up so I can be recharged for whatever tomorrow brings. Best wishes.

For months been saying DD's hair doesn't smell normal. It never smells good no matter how many different shampoos/cond. she tries. A while ago I thought, maybe it's toxins being released?? Anyone experience this?

We see an LLMD (not #1 dr. choice but I'm deperate) in 2 days and chomping at the bit. Only have 1 opening for 2 of my children right now b/c got a cancellation. Was picking DD9 at as she hasn't attended school in 6 days. Metldowns slowing down but has foot pain(varies tingling to sharp pains), thumb joint pain, electrical pulses (best description???) from forearms to hands, feels like eyes are going to pop out of head--these are in addition in the past 2 wks to PANDAS symptoms she's had since May. But DS6 is raging BAD these days. Not all day but when it happens, look out. Epsom salt baths are our saving grace...so maybe he belongs at the appt Wed. Huh decisions, decisions...at least moving forard. Anyway, IF turns out to be Lyme and/co-infections, was strep just a part of LD and PANDAS was mis-dx'd or does PANDAS go hand in hand w/ LD? I had a popular PANDAS neuro telling me he only saw 1 case of PANDAS and LD a while back. I know better from forum! Our immunologist overlooked LD b/f IVIg b/c Igenex "appreared" normal but so many of you said see LLMD b/c not cut and dry. Just feel like there is still such missing info between what docs know and we are left to pick up pieces so I thank you all for your advice.