kmom

@ LymeMom--Thanks for the input. Glad to know you used the same docs we're seeing and to know you had success w/ them. We are really looking forward to Dr. J's opinion. I booked Dr. J at the end of Oct. when I had a strong feeling Lyme could be the culprit and it's been a gift (appt. is on my b-day!) we're counting down to! But within a week or two of booking w/ Dr. J, I got very sick and simultaneously a local wishy washy LLMD pointed out the kids' positive IgG Bartonella Igenex results which our immunologist in CT failed to explain b/c he interprets the test differently (I'm assuming). To me it seemed our immunologist was interpretting the results more like the infectious disease dr's school of thought. TPotter was so kind to give me Dr. Beal's info that weekend before Thanksgiving. I called Mon. and the receptionist I spoke to(whose mom happens to have LD) must have a special spot in her heart for LD patients. She had 2 cancellations the following day and she managed to get Dr. B to stay late during his holiday week/his family in town so that he could see all 3 of us. Does Dr. J agree w/ the fact Dr. B put my kids on natural chelators to release metal toxins?I wonder why he doesn't make that part of his treatment. Dr. B doesn't have us on any extreme supplementation regimen but I like his philosophy of getting important vit./mineral levels up to par and detoxifying heavy metals in body to get the immune system to a healthy level. He thinks a healthy immune system and abx's are the key to clearing the Lyme and avoiding a relapse. I laugh when I think back to how healthy I thought I was. I mean a few years back I was. But especially in the past year when the kids were so sick, I was getting minimal hours of sleep, eating poorly, STRESSED and not exercising like I had in the past. But still thought I was invincible. I know better now. Dr. Beals made me realize that this healthy mindset doesn't stop even after LD treatment. He joked w/ me that he's really 106 yrs. old but he practices what he preaches and is holding up well! LOL! I agree w/ sticking w/ an integrative dr. after all we've been thru. Our kids' peds and family dr. pre-PANDAS/pre-Lyme gave us minimal mins of their time @ an appt and just didn't have the insight we've found w/ Dr. Beals. @TPotter--So sorry to hear about your husband. I pray he has a speedy recovery. I hadn't seen you on the boards lately. Now I know why. Stay strong. On a happy note, my kids who were too sick to have b-day parties last Sept and Oct are on a good enough track that we booked a party for them in 2 wks. I promised that once they were doing better, we'd celebrate their b-day's w/ friends. They never let me forgot nor did I want to! I just couldn't plan parties back then when my DD was plagued w/ contamination OCD and daily meltdowns where it looked like her head was literally sewn to the carpet until I could physically put her in an epsom salt bath and wait for her decompress. And my DS whose rage, frustration, defiance were so heightened for him, some days it was unbearable. Gosh, his actually b-day was one of his worst days ever for him. One major difference, back then both were on steroids (Dr. Beals cringed @ that) and we weren't targeting the Lyme w/ the best mix of abx nor were we combating the yeast. I pray we never go back to that dark time.

Sorry, I don't know of a good Dr. in your area but boy Dr. B in MD is awesome. He really seems to know his stuff. He will not start off the appt. like the doc you just saw. He's very logical and kind. He's direct & confident but not cocky. He was more serious at the first part of the initial visit but we were all joking by the time he got to the 2nd and 3rd hour...long but sooooo worth it. He'll at least get you on the right track and maybe can refer you to someone down your way. We have seen him 2x now in the past 7 wks and finally have made huge strides after a long year w/ only tx-ing PANDAS. We definitely think our DS6 has had Lyme or some infection/issues since birth...poor little guy. My DH always described him as "discontent" much of the time. We could never quite put our finger on it. When we left Dr. B's office, I asked DH, what do we do about our appt in Feb w/ Dr. J in CT? I feel so confident w/ Dr. B. But...Dr. J is fantastic. We decided to still go for that 2nd opinion w/ Dr. J b/c we just don't want to miss anything w/ our 2 sick kids. We think Dr. B is great especially for me, but want that extra opinion for our kids since we've waited months to see Dr. J. I hope you get a lot of answers from Dr. B. and you see improvement soon. Kristie

Both of my kiddos seem worse during change of seasons w/ allergies but my DD is way worse than DS. That poor kids' nostrils would get so inflammed on the inside. I used to tell her to blow her nose but she couldn't. Nothing was there, just inflammation. In the beginning of PANDAS tx, I used to wonder if she was having an exacerbation from time to time due to being exposed to a cold or from prolonged allergies. In hindsight it was probably the Lyme/Bartonella going untreated that ramped up neuropsych symptoms. Our immunologist tested the kids for both food and environmental allergies. DD was off the charts for environmental allergies. Dr. was planning to start her on allergy shots just after her 1st IVIg but that was when Lyme flag was raised, plus I was on the fence if shots were good for my PANDAS child. So afraid to add anything to the mix. Just b/f her Lyme Dx, we were noticing other allergic reactions...swollen, itchy eyes and sometmes hives on her eyelids at random times from simply playing Legos on the family room carpet (new home--fresh chemicals on rugs )...simimlarly to how she starts to react when she's exposed to nuts (nut allergy started @ age 3). Then, just over a month ago, she went into the same reaction at the bowling alley. But this reaction went from eyes to trouble breathing. I was not only scary but sad b/c I was trying to get the kids' mind off their herxing from Lyme tx and we couldn't even have a peaceful moment on a bowling outing. Our LLMD thinks it was the chemicals being used to clean the lanes. It was a Mon. afternoon, completely empty so the place was waxing the lanes. After multiple times of picking up the ball, then touching eyes here and there, she reacted. I immediately thought she must have been exposed to nuts. But it seemed more likely from the chemicals. My son too (no nut allergy) said his eyes were a tiny bit itchy. SF Mom was helpful in teaching me about how Lyme patients tend to have higher histamine levels. Our LLMD decided to put the kids on Tagamet stomach acid reducer nightly and save the Benedryl to treat reactions (my sister who is a nurse mentioned the idea to me b/f the LLMD actually....who would have thought!) It has a histamine blocker (H2 blocker) in it and helps to control histamine levels. The kids had complained from time to time of what seemed like acid reflux too (maybe from all the meds) so it seems to be killing two birds w/ one stone! Amazing how unexplained stomach aches were such an issue w/ them for so long especially after eating, but since Lyme treatment, controlling histamine and acid reduction, we NEVER hear of stomach pain anymore. Overall just a much happier home thank goodness.

MichaelTampa, Thanks! I had a feeling you might know something about this from your other posts. I appreciate the input!

I am about 7 wks or so into treatment. Months prior to treatment I noticed my stomach would make a lot of gurling sounds, mostly noticed when I got into bed at night and woke up in the morning. It wasn't a hunger pain, but gurling in different parts of stomach cavity. LLMD thinks I have gut issues for sure just from describing IBS and dry skin issues which he says reflects an unhealthy gut. I noticed about 2 wks into tx (Doxy, vit & supp., probiotics and digestive enzymes) that the gurling was gone. I was so happy. Now in the last week, LLMD added meds to the mix,Ceftin and Diflucan, and the gurling is back big time! It's the first sound I hear in the AM. Could the herxing also be affecting my stomach? Did Doxy kill off some parasites and now Ceftin is doing the same? Just wondering.

I completely understand the shock of it all. I knew when I investigated Lyme for my PANDAS kids that it was possible it stemmed from me. I didn't voice it to0 much to family and friends b/c I feel like people would think I was looking for a valid reason as to why this happened to my kids or that I was overgeneralizing that most of the world has Lyme. But after reading about Chronic Lyme symptoms, red flags were raising left and right. Aside from the red flags, I got sick--"bad very quickly" as Suzan described after my flu vaccine this fall. It was light turning on a light switch. I was told by Dr. J's office manager, a retired psychologist from the PA Lyme Organization and my LLMD that people w/ Lyme should never get the flu vaccine but I had no clue I had Lyme! In hindsight, I am grateful something pulled it out of me to make me get treated b/c I do wonder about the diseases down the road that set in due to Chronic Lyme. And as clear as the possibility of Lyme seemed in my brain fogged head, I remember how I teetered between an appointment w/ an LLMD and Infectious Disease Dr. I think b/c I kept much of the symptoms to myself and suffered in silence w/ this latest relapse, my mom was telling me I was just burnt out from sick kids and I needed more rest. But I knew it was more. I did have a consult w/ an inf. disease dr. He was concerned w/ all these symptoms happening suddenly and at once. But, he wanted to scan/test/rule out diseases like MS, arthritis, chronic fatigue syndrome and fibromyalgia...all of which scared me. Who knows what he would have Rx'd me? Probably anti-inflammatory drug and sleep meds. Not that Chronic Lyme isn't scary but if Lyme and co-infections are the culprit leading the inf. disease dr. to believe I could have one or more of those diseases mentioned above, I wanted to treat the underlying cause, not spend a lifetime treating the ugly symptoms which could very well worsen with time. So I decided push ahead with the LLMD treatment after a clinical dx and I have seen progress. 2 wks after starting treatment, my LLMD sent a bunch of test results in the mail. I was reading them to my mom over the phone as I flipped throught them. I read that my DS's CD57 was 38. I didn't see my score in the pile. After going through it again, I realized my name was at the top of the paper for the 38 value of CD57! (brain fog!) I said, "Oh mom, that's my score." I don't know why but I almost started to cry. I was shocked. Like I knew it was happening; I felt the disease daily but reading it on paper was much more real. I swear I went through the next 12-24 hrs. in shock. How could reading it make me feel worse than I already had felt physically?! It was strange. But I snapped out of it quickly. I decided it was better to know and get movin' on fixing it rather than dwelling on it. And not that I am thinking more clearly, I am actually excited to have explanations for weird symptoms I've felt for a long time. They stem all the way back to my childhood when I too had PANDAS-like symptoms. Started off w/ Scarlet Fever then chronic strep and eventually separation anxiety and OCD but not as debilatating as my children. And the funny thing is, I managed it well enough that friends today never believe I was shy or anxious as a child. They never believe my mom when she says I was the kid glued to her leg, cried w/ stomachaches when I was dropped off at soccer practice fearing they'd forget to pick me up. My parents called me a "Wory Wort"! But as I got older I broke that mold. I was the the one who went away to college, did my school work but also lived for partying and having fun. I agree w/ the others here that I'd get to an LLMD before spending more $ on tests. Hopefully your LLMD will be sensitive to the money spending factor w/ Chronic Lyme and help find ways to test that aren't too expensive. My LLMD didn't have me do an Igenex test. He didn't see the point. I had the symptoms, 2 kids w/ it and did other tests that my ins. covered. I am curious to hear what he says about treating you...whether you wait till you feel symptoms (which you might already and you aren't recognizing as Lyme) or start treatment. I was under the impression that most don't treat until symptoms arise. Good luck and keep us posted! Kristie

Ironic to see this post. A few weeks ago, my sister, a nurse who lives north of SF, told me about Bioresource b/c her friend from work is married to one of the guys who works for the company. Her friend heard we were battling Lyme and gave me their website address. My sister was pushing me to visit and go to the conference. She didn't realize it was only for practicioners. I'll ask her if her friend can score anything--DVD, info, etc. I'll share any info I can find...if any.

Dabel, Well put. I have had this overwhelming feeling lately to buy out the front page of the NY Times and scream to the oblivious and naysayers what is happening to our kids. (like I have that kind of $! but nevertheless the thought makes me smile big!) It is so frustrating. I feel at times I pigion holed us into a just a PANDAS dx for my kids. I thought I figured it out b/c DD fit the classic PANDAS case perfectly. Completely normal, happy, good student contracts chronic stubborn strep and after T&A, boom PANDAS. Hindsight is 20/20 and down the road hopefully most doctors will look at families like ours and the LLMDs , holistic doc and any others docs brave enough to look outside the box and fight for our kids as smart cookies before our time b/c we had a clue while all these other docs say Chronic Lyme or MCID doesn't exist. I keep saying I want one of the doctors to live in my house. He/she can stay for free and just observe. I wouldn't even ask for meds b/c I have good docs providing them but just so they could see everything that goes on through this journey. Living it is way different than hearing about it. Luckily the LLMDs we've all found seem to understand. I guess I get angry that while we had tunnel vision for PANDAS, our neuro and immunologist weren't pushing other testing. I mean, sure we did a Quest WB which was neg. and we even checked mycoplasma but that wasn't revisited for months later when I had to ask for a recheck and voila, my DD and I were positive for mycoP. I think the important part tho is not to remain too angry for too long. I stay in that state just enough to convert it to energy and perserverance. As far as getting your son through this to win the fight, I don't have much advice. I get grief from my 6 yr. old about he doesn't want to go to doctors b/c he doesn't get better and medicine doesn't work. He's absolutely sick of meds. I understand. It's not fair but it is what it is. Is your son healthy enough to understand how killing off the bacteria causes neurotoxins, can make you feel worse, etc? It's tough to explain to my 6 and 9 yr. old altho my older one seems to understand it better. Both kids are doing better since Lyme tx but the 6 yr. old doesn't notice. He feels better but since that's his new normal at that moment, he isn't appreciating it or recognizing the progression like I do. All he sees is a huge pill case in his face daily. When we add a new meds, start killing more "buggies" and herxing happens, he's only remembering that he's still sick. I think a good LLMD might be able to help your son w/ the depression struggle. Plus, MichaelTampa had a good suggestion w/ detoxing. I really think charcoal and bentonite clay (we switch it up), epsom salt baths, probioitcs, boosting the immune system help. Have you checked all of his vitamin and mineral levels? Low vitamins like vit.B,an abundance of yeast and heavy metals and not eating a "clean" diet can really mess with your body on top of the infections. I was saying in another post today how I look back and our neuro and immunologist really missed the mark on these things. It took seeing a regular MD who focuses on good nutrition, good rest, boosting immune sys. and knows Lyme and other infections to really shift our focus get the ball moving in the right direction. My heart aches for you. You must be exhausted caring for 4 sick children. When PANDAS started w/ just my DD, it was overwhelming. When my DS started 3 wks later it seemed like a sick joke. I honestly was embarrassed and hid it from neighbors and extended family in fear they'd think I was nuts. We were new to our town/state and that only complicated matters. And I am not embarrassed of the disease (PANDAS, Lyme, and/or MCID) but I needed time to understand it more so I could speak about it intelligently since so many people looked at us like we had 4 heads. The only people who seemed to understand a tiny bit were those who saw Saving Sammy and Lauren (sneezing tic) on The Today Show. As things morphed into a Lyme dx for the kids and simultaneously I got a flu shot which seemed to help knock my already taxed immune sys from lack of sleep, stress, etc to spiral downward and for my Lyme symptoms to hit hard. (In hindsight I had symptoms in the past but never this severe which dr. and I think b/c I had a more robust immune sys. then. Also, kids and I had been on abx's from time to time for sinus infections and other illnesses that seemed normal but looking back happened more than the average healthy person.) I used to look at some of my friends' kids and think they were lucky b/c their kids were never on abx, didn't have chronic ear infections, croup and bronchialitis. I used to beat myself up thinking it was due to bad genes or the fact I didn't breastfeed bc of a supposed prolactin tumor--elevated prolactin but no tumor ever seen on MRI--hmmmm????...come to find out Lyme may have played a role w/ that too.) It's scary b/c I watched this Lyme forum grow. I went from "lurking" when I'd get done reading the PANDAS forum to now never even getting over to the PANDAS forum b/c I spend time on the Lyme forum when I get on the internet. Maybe the growing Lyme population on here isn't a bad thing. Maybe this will prove over time to the non-believer docs that they need to think outside their rigid box. Maybe better screening will be done in pediatricians offices b/c my ped. did nothing to help us. And what's even scarier is that I volunteer in my kids' school and more and more kids are emerging w/ anxiety, OCD, chronic strep, etc. And the last time I drove my kids to school a family of 4 deer came running out of the school yard. Used to be a beautiful sight to me...not anymore. Best of luck! And please, vent anytime. It helps! Kristie

Thanks everyone for the kind words and for celebrating w/ me. I know how good it makes me feel when I read you and/or your children are progressing. It fills me w/ the hope I need to get through this ugly disease. I was so reluctant to post all week b/c I was afraid to ruin our good streak! Our appt went well. I really like out Dr.(thanks again Tpotter!!!)--just so logical and has info to back up what he does/thinks. I always feel better after talking to him. And he's so willing to answer questions with definite answers. During my PANDAS journey, our specialists, albeit good ones, were never focused too much on boosting the kids' immune system w/ good things like essential vitamins. The immunologist was wishy washy. I'd ask how much fish oil, amts of DHA/EPA, how much vit. C, etc. I got the standard, "Oh just get fish oil @ GNC. A multi vit. should be good enough for vit. c." Yeah right! This dr. b/c he's a reg. MD and nutritionist actually goes over the amts of each vitamin, hits upon "contaminant free" fish oil, etc. He even test my urine for Vit. C to see how much I had and needed. His philosophy is use oral abx if not allergic and GI tolerates well (pushes probiotics to help and I agree) and boosting immune system by targeting those minerals and vitamins you're deficient in and from there, body with the help of abx will kill those nasty Lyme/co-inf. buggers. Oh, he also believes in removing heavy metals/toxins. We did hair test on kid a month ago but I highlight my hair so I couldn't do the hair test. Had to get the injection of DMPS and then collect urine for 12 hrs...that was a funny scene...driving home the 2.5 hrs., stopping at Chipotle for dinner and bringing in my urine collection container. Thank goodness I had a tote bag. We all had a good laugh at least. I thought, if kids tell their friends, they'll think we're so bizarre! It's bad enough we're the "Chronic Lyme family" but their mom totes her urine around into restaurants?! Will they ever get prom dates?! LOL! Dr. kept DD9 and DS6 on Augmentin, Azith, Rifampin, Diflucan, Low Dose Naltrexone, Tagamet (Histamine blocker b/c we've had allergic reactions w/ DD--scary one @ bowling alley a month ago from the chemicals used to wax the lanes) and vit/supplements. He added the 1x/month bicillin shot. Actually he Rx'd that 6 wks ago but long story, never got it till this appt. I wanted to use Emla cream as Cobbiemom suggested but Dr. had shots right there and thought let's just do it. DS was a complete trooper. Didn't shed a tear but turned green w/ pain after it was over. DD was a mess and Dr. offered Emla Rx for next time after he heard her wimpers! The Dr. also added Pectasol (sp?) to reduce metal toxicity...anyone familiar w/ this? As for me, he was really happy to see that the symptom questionnaire he had me fill out after the 1st appt in which I scored a 39 overall for symptoms was now down to an 8 after 6 wks of treatment. It's a handy form. After filling it out (0-3 scale according to severity of symptoms), you add up the score. Then you go back and add up single * symptoms and double ** symptoms and fill in the score. The non starred symptoms refer to Borrelia. * symptoms refer to Bartonella and ** symptoms refer to Babesia. The time I filled out the form, I had a high incidence of Bartonella symptoms, just like the kids. I had a low incidence of Babesia symptoms. It was neat to see how I improved over the 6 wks. You can think, "I feel better!" but seeing it is refreshing. It reminded me how far I had come. I told the Dr. that symptoms I scored a 2 (moderate) felt off the charts bad like a 4 while herxing. He said,"Good. I wanted you to leave here and feel awful. It helped me know was going on & you are on the right drug." He was so happy to see all 3 of us responding so well but warned us that each "peeling of the onion layer" will make us feel worse but each layer the herx usually isn't as bad or long. He added Ceftin & Diflucan to my mix of meds. Also, for some reason, I didnt' hear (major brain fog last appt) him tell me to take Iodine Synergy and digestive enzymes. Anyone take these? Was wonder if/how it helps. Digestive enzymes for gut issues and/or bc I had gallbladder removed a few years back. He told me that next month he'll add Flagyl and in about 3-6 months when we're hopefully at the 11th hr of treatment which means no more herxing and symptoms, he'll treat w/ meds for 2 more months and be done. Oh and that my CD 57 that's a 38 should get up 150-200 mark by the 11th hr of treatment. All in all it was a great appt. Unfortunately, the kids have herxed from the Bicillin shot. I could tell w/in 6 hrs or less w/my DS that he was ramping up w/ ODD type symptoms. It was literally like a light switch turned on the symptoms. My DD started w/ just not feeling right Sat. night. By last night, both had major meltdowns. Guess we're back to regular epsom salt baths. It's so sad to go backwards after being meltdown free for probably 4 wks or more but that was a great stretch we had going and I am very confident we'll get there again. They are both home from school today b/c DS didn't sleep well. Up a bunch of times crying in sleep from nightmares and restless sleep--seems to be from herxing when I look at patterns of this since it's not his normal routine. He also has major shoulder joint pain and is cracking. He's extra aggitated today and told me they are never going to get better and why do they take meds. It's so hard to explain this to adults let alone children. I explained the whole "worse before better" concept and asked him to trust me. Anyone out there dealt w/ herxing from bicillin shot? Does it last a long time? I feel edgy and more arthritic type pain & popping from my meds addition. Trying to keep my chin up but just a Lymie day. PS--LLM, please don't apologize for hijacking the post. U didn't. I love good news. It really fuels me!

I was so sleepy writing that, I forgot the most important part...THANK YOU so far to all who have led me in this direction. If it weren't for you who walked this road before me, we'd be at rock bottom still and it's a lonely, scary place.

My two PANDAS kids (dx'd PANDAS May '10 but never made huge strides till we investigated/treated for Lyme/Bartonella) and I started Lyme treatment just before Thanksgiving. I've been apprehensive to post any strides b/c I feel like I am always waiting for the other shoe to drop. But...we've turned a corner! How long will it last? Not sure but sure was nice to have a good Christmas/New Years. I was so ready for things to spiral backwards after returning from our holiday trip to Florida--kids were on a high to see grandparents and family but was afraid returning home and back to school could set them back. But I have to say this past week has been the the best my DD9 has been since last April! Everything was just back to normal and easy. She even noticed. She woke up this AM and said, "Mom, have you noticed I haven't had a meltdown in a while!" I was hoping she'd notice. This week was finally like the all the other weeks of her life pre PANDAS/Lyme/MycoP/Bartonella. My DS6 is also doing much better. He still has some frustration/aggitation/anxiety but overall it's a new world. They still have the popping and cracking joints here and there but the pain and neuropathy has surpassed. My pain/arthritis symptoms are still noticable but much better. Much of the brain fog has lifted...still feel "dumb" and forgetful sometimes but not as bad as it was! We head out to our follow up appt. w/ LLMD tomorrow. I am prepared for him to switch up meds and know we all could go backwards but knowing we reached a level of peace for a few weeks was really refreshing! Oh and in meantime our local dr. tested my DH and he came back with the following results: IgG 41 + IgM 23 + Vit. D is 16.9...we're all low but he's the lowest! CD 57= 160 IgG Chlamidia pneumonia + IgG Epstein Barr Virus + IgG HSV 1 + I used to always say he had narcolepsy b/c he'd fall asleep at parties! Not kidding. Maybe that was the Epstein Barr??? He had a tick on him 16 years ago. He has symptoms that correlate w/ Lyme so we're bringing his results w/ us to the LLMD tomorrow for review. I realize we could have a long road ahead of us but I feel like we are FINALLY on the right track. I type this as I hear the host of Nightline talking about the number of preschoolers on anti-psychotic drugs for rage, bi-polar, etc. and can't help but wonder if any of these kids have Lyme b/c their behavior is quite familiar...

I have two friends in search of a good LLMD. One is for a friend in MS w/ a child who exhibits Lyme-like symptoms. She has high levels of heavy metals, yeast issues,neurolyme-like symptoms and hasn't attended school this year The other is an adult in FL who has been treated for fibromyalgia for some years now. She used to live in Jackson,NJ when her children were younger. She said the ticks were so bad that she did tick checks every night and saw them crawling on her floors. Her dog died of Lyme disease while in NJ. She herself got tested for Lyme years back when pain set in. But Mayo clinic said her Lyme tests were negative so she went w/ the infectious disease dr's advice and takes meds for fibromyalgia. I had her watch Under Our Skin and she's very interested in finding an LLMD in northeast FL or one close enough to drive to. Thanks!

Gosh, I too remember reading your son's list of issues to conquer. That is fantastic and gives the rest of us a lot of hope! What a great Christmas present!

I refrained from posting on this a few weeks back b/c I was just going thru my downfall w/ Lyme. I have 2 PANDAS kids who never got much better over time or did improve somewhat for about 3 weeks and then by the 4th week symptoms appeared again. My previous issues of sudden gall bladder attack and removal, IBS, pituitary tumor diagnosis to explain my elevated prolactin level (but no tumor ever seen on MRI and was on Rx for 15 years to regulate menses--I'd be willing to bet the Lyme could have been the culprit), bi-lateral carpal tunnel and trigger finger release surgery and some other symptoms that I thought were just unlucky but maybe now all stemmed from Lyme. I know I'll never know for sure. But after my flu vaccine on Nov. 2nd of this year, I went down hill. Within a day or two I felt achey and tired but it seemed like that was from the vaccine...not a big deal. A week later, I had MAJOR bone and joint pain and cracking. I felt like I got run over by a truck--heaviness from shoulders to hands, carpal tunnel pain, electrical pulses from elbows to hands, ear pain upon waking, pain in bottom of my feet and brain fog which was bad b/c I'm trying to nurse 2 back to health. I was in denial b/c it was just extremely inconvenient! LLMD put me on Doxy and the herxing began. One disturbing symptom that appeared were nodules under my skin on my fingers. Dr. believes that's part of herxing. My western blot & C6 peptide were negative. My CD 57 came back at 38. The only other abnormal results are my Vit D=27, hemoblobin and hemocrit are a little elevated. Since being on Lyme tx, I've improved slowly. I felt non-functioning a few weeks ago and now I am back to doing most things but even just after volunteering in my DS's kindergarten class this AM, I needed to relax on the couch this afternoon. I used to be full of energy! I want that back! Thought I'd share on this post so we have a collective group of Lyme moms w/ Lyme kids. I credit all these moms who post before me to helping my family. So thanks and happy holidays!

We see Dr. B too altho we're working on the Lyme at the moment b/c our LLMD believes the steroids they were on (within a month were on a burst, then taper and then again for pre/post IVIg treatment) aggravated the Lyme a lot. So if IVIg is believed as a treatment step down the road, I'll have to weigh the whole steroid thing. I just needed them to find some mental and physical peace b/c they were cycling every month where they'd backslide for a week or two. It was awful, exhausting and just so unfair. But better now that we've added rx's! They are nowhere near healed but managing and we're very hopeful now. We are located in near Philly but see an LLMD near Annapolis, MD. He's very good at responding to phone calls on days he's in the office. Hasn't been the case w/ some PANDAS docs we've seen. It's quite frustrating when you are desperate and paying a lot to have them treat your kids. Good luck and PM me if u want the LLMD contact's info.

DD and DS were dx'd w/ PANDAS last May/June. Honestly, my DD fit the mold b/c of her stubborn strep throat infection, but my son fell into that dx b/c he ended up w/ neuropsych symptoms a month after DD started w/ symptoms and he had had a positive strep culture months prior but asymptomatic. Both dx'd w/ specific strep immuno deficiency hence they had IVIg in Oct. Symptoms turned even more Lyme-like after that. Kids were dx'd w/ Lyme and Bartonella a month ago right as I was getting major joint/bone pain, nerve issues, extreme fatigue, etc after my flu vaccine. Our LLMD started treating me due to a clinical diagnosis b/c I was in bad shape. I went thru herxing after starting doxy. Yesterday got my CD 57 score. Haven't talked to my LLMD yet but my score is 38. Does that score just make the Lyme/Bartonella dx more believable or is that number reflecting my elevated Myco P results? I was 4.64 for Myco P in May of this year (we tested whole fam for strep and myco P titers when DD was dx'd with PANDAS. I got rechecked in Sept. when I was confused as to why kids were not improving w/ PANDAS treatment. My Myco P was 4.74. I wonder where I am at today. My Quest Labs for WB, Bartonella, C6 Peptide, etc. were all negative. But just being on doxy and supplements, I'm improving...not well but better. My DS6 also had the CD 57 test. He ironically came back w/ a 38 also. I hear that this test isn't always accurate in kids. LLMD reads his Igenex as positive even tho CDC doesn't and treatment is making things better. Thank goodness for Rifampin and Diflucan that was added to their Augmentin and Zithromax that Dr. B had them on for PANDAS. Both kids are responding now that we're targeting their Bartonella infection. I also think Low Dose Naltrexone is helping them too. Just so glad to be treating the whole picture and not just the PANDAS. We were going in circles. Rages and meltdown so much better thank goodness! I pray we continue healing as well as all of you.

Yeah, the Dr. we share Rx'd it for me. He was gung ho about it and I was weary as I never have taken anything remotely like this. I was told stress from kids being sick is horrendously bad for my own immune system health and that along w/ the flu shot is probably what help bring out my LD symptoms. He was also concerned by how little sleep I have been living on. I used to get like 5 hrs./nt. He said I needed more rest and this was going to level off seretonin and do the trick. I decided to put the bottle to the back of the cabinet b/c I didn't want to confuse any herxing w/ Trazedone side effects. He warned me to start off slow...1/2 pill 3 days, up it to 1 for 3 days and so on till 2 full pills/nt. I started the Rx about 10 days after starting Doxy. It does make me fall asleep easily and I sleep like a log. I don't even move in the night. Dr. warned of one side effect...feeling groggy in the AM for about 30 min. Hasn't been the case so far. I actually wake up right when my little guy comes to wake me up. I usually lay there for a little but haven't felt too groggy. But, I have read other side effect. One that doesn't thrill me is that it's an appetite enhancer...not what I need now that I haven't played tennis or been running due to joint pain and low energy. I'm still super skeptical and thinking I'll switch to melatonin, valerian root or something my nutritionist mentioned. She didn't like the fact that it was a prescription drug. Me neither. I'd love to know if other LLMDs are prescribing this or just our Dr.

DS and I had appt w/ the nutritionist today. DD saw her last week so today we got to dive a little deeper into everything aside from having our first formal consult (we touched upon DS and me @ DD's consult last week). Aside from our abx treatment and other stuff like multi vitamin, fish oil, Vit. D3, probiotics, low dose naltrexone, milk thistle and charcoal/bentonite clay, she added some other supplements/herbs--as if that didn't make me feel like a mom/pharmacist already. She added: Calcium Lactate, Immunplex, Cat's Claw Complex, Dermacol, Superzymes, Ultra-Proteozimes and finally a shake called Ultra Infalmmax 360 mixed w/ Glutagenics. (Shake is known for healing leaky gut syndrome and inflammation which all 3 of us seem to suffer from.) Not only is all this costing a ton, I get worried. Is all this good for us? Does it make a significant difference? She makes sense when we talk about what to take and why but it's seems like so much. Just wondering if others are doing a lot of herbs/supplements and if you think it's made a huge difference. I ready a study on Cat's Claw Complex and it seems to make a huge difference but that's just what I read. Are there 5 other studies out there saying it doesn't help? Any advice is greatly appreciated.

Today we noticed nodules just under my skin on some of my knuckles. I thought I felt something similar in my thigh last week but the ones on my fingers are very obvious. Anyone had/have these too? If so, do they go away? Does it take a while?

Today I took my PANDAS/Lyme/Bartonella DD9 to a local nutritionist/wellness center. I actually made an appointment back in June 2010 after PANDAS Dx and her contamination OCD began. The nut allergy she managed for years w/ no problem became a huge issue. Stops her from eating at most restaurants, friends' houses, etc. I ended up postponing that appt back in June b/c I felt that she wasn't mentally there to handle a nutritionist's advice. If this was truly an infection causing the OCD, it was going to be a waste of money. Now that we have progressed to Lyme Dx and DD in a better place--herxing bad at times but it's like things shifted in a way. She/we understand more concretely what is happening (altho perplexed many moments still as you read on here ) We have talked about nutrition, healthy choices and less simple carbohydrates (she addicted it seems!!!). My DD sometimes listens more to specialists than her parents so I called back up the nutritionist so she could help DD w/ food choices and me with all the detox stuff. It was a fantastic visit. The nutritionist was awesome. She was blown away and captivated by our story. She copied lab results, copied Dr. Cunningham's explanation of Cam K/anti-neuronal AB's/molecular mimicry info. She wanted me to talk to her colleague who runs the center and has a radio show b/c her background is in immunology. This nutritionist seemed to know her stuff about Lyme treatment and was just so interested in what we have learned (I talked highly of this forum!) from parents and doctors. She beieves in the use combination of abx's, vitamins and detox. She also had my DD and I use the their Rife Machine or "Biofrequency Machine" was their name for it. She believes it helps. Does anyone else believe that is a helpful addition to treatment? Oh and the EMF talk was overwhelming. If all that is true, I probably THE highest EMF house on this forum. We have wireless EVERYTHING!!! We have wireless laptops, cordless phones, cell phones, the entire house lighting system and some roman shades run wirelessly by remote control or our Apple iTouches (husband is an electronic geek and works for lighting and shade company.) Oh boy! We need some changes!!! SF Mom--before we left DD went into her anxiety mode and histamine reaction--itching,scratching and upset. I gave her Benadryl and told her to get in the car anyway. She settled. Of course in my head I thought, "What if this is b/c we reintroduced the Diflucan b/c dr. and I don't believe it's causing Rx reaction but maybe it is." Oh the 2nd guessing and self doubt! The nutritionist had same thoughts as you about the histamine from "leaky" gut syndrome. She doesn't think it's an Rx reaction either. She had us get homeopathic Histaminum. Not sure it will work like Benadryl but worth a shot.

Thanks everyone! Your comments and experiences are always so informative and helpful to our discussions on our end. I appreciate it.

Not sure why I chose Kmom as my forum name...I think "So confused" would suit me better! LOL! We did 1st IVIg Oct. 20 and 21, 2010 for PANDAS. Things have been anything but smoothe since then. In meantime, both kids were dx'd w/ Lyme and Bartonella. I am being treated too due to symptoms. Dr. B has kids scheduled for 2nd IVIg next week. LLMD says don't bother, maybe later. If it didn't help 1st time around much, probably won't help this time. When I left message for Dr. B, nurse responded w/ "Dr. B said do IVIg bc it is a complimentary treatment for Lyme too. It boosts the immune system." Another thing our LLMD said was no steroids if you have Lyme but steroids administered b/f, during and after IVIg. From what I hear, a top LLMD, says if any of kids' anti neuronal antibodies are elevated on Cunningham test, do IVIg and Lyme treatment simultaneously. I just want to get the kids to a better place, even if it takes longer to treat b/c it's tough right now w/ them not doing well while I am struggling at the same w/ my treatment. I'd love to hear personal and dr's advice b/c we are completely lost. Thanks!

I started Doxy over a week ago. It's so similar from what I hear and our LLMD said to IGNORE the take on an empty stomach rule listed on bottle. He said to eat and take it. And make sure it's good solid food. This AM I was rushing to get to an appt and didn't eat a great breakfast and I felt the burning feeling in my esophagus. I had to pop a pepcid AC later. Most days I am fine b/c I am cautious to take it with meals. Only the 2nd dose of it did I vomit and I ate a small bowl of bran flakes and milk. Otherwise, I am now starting to feel less severe symptoms. My bones don't hurt so deeply. Good luck!

We had C3D scores w/ Dr. B a while back. DD's=29 and DS's=36. Normal range is 0-8. From what I remember Dr. B said it meant something auto immune was going on. Does anyone else have more info on those scores? How it could relate to Lyme?

Wow! That's such good info! Thanks!