kmom

Thanks for the info!!!

I am getting ready for our road trip. Thank goodness it's a beautiful day/week. I always feared this 4 month wait would arrive w/ a Feb. blizzard! My kids have been treated for PANDAS since May/June and started Lyme treatment end of Nov. We love our integrative MD but feel like we can't pass up the opportunity to meet w/ Dr. J. and get his expert opinion. Any advice for us? We have a 2 hr. lunch break between the kids' appointments. Any good place to grab lunch nearby? Does he lead the questioning during consult or should I have my list of questions ready to fire? I am curious as to how he will handle IVIg since they both fall in the PANDAS range on Cunningham test. Does he push IVIg? Kids had one round back in Oct just as everything was getting very Lymie. Does he had a play area for the kids or should we have laptops and movies ready to roll?

Fantastic idea! I feel like I have this urge to do something proactive too. Right now I put my energy into my own kids and helping others on the side through word of mouth or the forum. It takes time but rewarding. I have a 31 yr. old cousin who is basically incapacitated and every bone in my body tells me it was infectiously caused. His parents were in touch w/ our PANDAS neurologist last summer but not much was done b/c he's so far gone. So sad. If there was awareness back then, he could have had a shot of life and not hide from the world for 15 yrs. It's heartwrenching. Let me know what you find. Maybe I can help!

Hi Karen, I'm the one Philamom is talking about. I'll PM you with the scoop and explain why/who we go to for treatment instead. It would have been a match made in heaven since your appt tomorrow is 2 miles from my home but didn't work out that way for us. I think it's a very individual choice on how patients want to proceed w/ treatment and how much you feel the Dr. knows depending on how complicated the case is. Although, many of seem to love the certain doctors we discuss on here and only make them more popular and bottom line, people improve which is key. Philamom-thanks for scoop on The Woodlands. I have looked that place up but had a feeling they weren't Lyme savvy enough for my liking since no one talks about them on forum or around town. Our DAN dr. had recommended them for gluthione IV push injections although we never did it. We got the transdermal cream instead. And thanks for the b-day wishes--"21 again!" I wish! Felt like 81 yesterday! LOL! Kristie

Thanks for responses. I started to see a pattern w/ the nausea linked to my digestive enzymes. I am going to test the theory. I didn't take them w/ dinner and feel better this evening, finally! I switched brands a week and a half ago and realize this new brand is stronger...even though nutritionist suggested this brand but were out when I started taking them, so I went w/ a different brand. When it was time to stock up again, I went w/ the nutritionist's recommendation but I think these stronger ones could be causing the nausea. I hope that's it!!!

I started Lyme Borrelia/Bartonella/MycoP treatment at the end of Nov. Started w/ Doxy along w/ supplements (vit. D, organic raw food multi, iodine synergy, omega 3s, calcium lactate, vit. c, probiotics, digestive enzymes, activated charcoal, methyl B12...think that's it). I herxed badly within days--flu like symptoms, vomitting 1st day, more joint pain, nodules on knuckles, fatigue and just felt better w/ my eyes closed than open. Then, within 2-3 wks. I felt a lot better and symptoms started to really subside! Jan 7th visited LLMD and he added Ceftin, Diflucan and Low Dose Naltrexone to the mix. I herxed but not as severe and not as long...just as LLMD had described! Started feeling a lot better again within a week and even started playing tennis again 1 day/wk. But last Friday I started to feel worse. I felt queasy, some burping (lovely--I know ) and just a "not feeling right" feeling. It isn't constant. I usually feel better in the AM and worse as day goes on. Last weekend I assumed I caught a little virus. I thought it went away by the end of the weekend but it comes in waves. Then Wed. night I went to a PANDAS/Lyme support group, came home late, took my night time meds and within an hour, I was hit w/ nausea and vomitted. I felt awful. I chucked it off to too many meds and not enough food??? The following AM I felt fine. But then as day went on same queasy feeling and again this afternoon. I'm bummin b/c it's my b-day and would like to enjoy a dinner out but gosh I need to shake this feeling. Anyone have experience w/ this? Any advice? I'd love to crawl into bed but tough to do everyday w/ 2 PANDAS/Lyme kids--although they are doing much better I actually transferred video clips of kids' meltdowns, vocal tics,rage, etc from the past 9 months from my blackberry to my laptop. The kids are finally at a good enough place that I can bear to watch the bad times on video. It's a great way to track their progress and see how far we've come on this journey.

I was in disbelief too when I switched over to this forum after just lurking. Interesting about the throat clearing. I have had a ton of that myself as I've started abx's for Lyme. Maybe part of herxing. It's rather annoying. Did you find an LLMD and get an appt yet?

Ditto 100% I just looked my 2 sleeping PANDAS/Lyme kiddos and thought, "Gosh life is so much better after discovering chronic infections (Lyme), switching to an LLMD and not only beating the PANDAS path." Not that I don't expect the ups and downs especially as we are approaching cystbutster mode but a good LLMD completely changed our lives for the better. Good luck!

Thanks Wendy! You are always so helpful and kind! I'll pass this info on tonight! It's weird. This mom is actually my cousin's cousin. So we're not related but we have known each other since children. The strange part is that my cousin has MS, my other cousin (one w/ MS sister) had arthritis growing up and is getting tested for Lyme now, I have Chronic Lyme and now this child ASD and gene mutation. Our one common ground is that we all vacation and have vacationed since children at our cousin's wooded lake house in upstate NY. I know there are so many places to get bit by an infected tick but I always wonder if that is a hot spot.

SF Mom, A friend whose DS 2.5 yrs. old was dx'd w/ Autism. She adopted him from Ethiopia back when he was under a year old. He's non verbal and has some other autistic tendencies. She recently took him to a DAN Dr. in NY and the dr. has dx'd him w/ <her words> "a genetic mutation in his MTHFR gene and some inflammations in his blood (we don't know from what but the Dr. suspects his gut and intestines). The MTHFR gene makes the MTHFR enzyme which combines w/ B12, folic acid and some other things to get methlation started. About 1/4 of population have some type of genetic mutation (some a single mutation, some double) but they find a high percentage of autistic kids have some mutation." Is this by chance the same mutation you are talking about? I have wondered if Lyme has played a role in this child's delayed development. This mom is working overtime to help her son. She felt lost to start since she has no family history records b/c of the overseas adoption. He's a smart boy but just can't communicate well. Although, from all the supplementation they started and G & C free diet, he did finally catch onto sign language which is making things easier. Didn't mean to hijack this post. I figured I'd post rather than PM in case this info we share can help anyone else. Thanks!!!

Adkmom, Poor little guy..I feel your pain and worry. My two kids were PANDAS then Lyme and yes, Dr. B was great helping w/ PANDAS but a good LLMD is so important if Lyme is playing a role here. Dr. B ruled out Lyme a month before my kids' first HD IVIg and it was after the fact that I got a copy of the labs, saw more Lyme-like symptoms and more than one LLMD said, "Your kids had a past exposure to Bartonella (an infection ticks can transmit along w/ Lyme Borrelia bacteria)." This positive past exposure was apparent in their Igenex test results when Dr. B read the results but as you have probably read or heard in the documentary, my kids nor I looked positive for Lyme initially in the eyes of the CDC or IDSA doctors. But, the testing is so insensitive. You need a good LLMD to really sift thru symptoms, test outside the box and work with the individual. I wish we had started w/ our LLMD when this whole mess started w/ chronic strep in my DD. I believe it would have saved a lot missed school, bizarre cycles of behavior, heartache, etc. had we seen whole picture from the beginning. Who knows??? The bug sensation you described happened here. My DD said it felt like bugs were crawling on her skin and a couple times like it was biting her nose and brain. It sounds like your son is herxing which is just a slang term for a Herxheimer Reaction. It occurs when large quanities of toxins are released into the body as bacteria dies off during abx treatment. Typically the bacteria die off and release of endotoxins occurs faster than the body can remove them and you see symptoms ramp up. It's not fun to watch but it's usually a good sign. When I returned to my follow up appt after my initial Lyme treatment, I told the LLMD that I felt just awful after starting Doxycycline. He said, "Good! I wanted you to leave here and feel awful, worse than you had b/f abx treatment, and then start to feel better! It assures me we're on the right track!" All of this is really confusing when you add in Lyme treatment to the PANDAS hunt you've been on. I remember thinking, "And what if this isn't the right path either?" But a good LLMD knows a lot about infections in general and from what I have encountered and many others on this forum, we're getting good results. So just hang in there and ask away b/c there's great sound advice and happy ending stories to be found here.

The plot thickens...Yesterday my friend's son's school nurse sent home a letter stating 5 kids in his class are home w/ strep throat. Her son is still very anxious, has a fear of vomiting and not sleeping well. He did say his throat felt hot even though it doesn't look red or white pus. But my DD had all the typical strep throat look and a mild pink throat at times while having positive strep cultures and my DS had no symptoms and a positive throat culture so it's good she's having him cultured. I just wonder if he's positive and put on abx for 10 days, what happens after. I guess it's the waiting game again.

Just talked to my friend and it's kind of the same. Had a snow day yesterday and he was pretty good...ate here and there, not the usual but ate thank goodness. I told her that is the most important thing right now while figuring out what's going on. She said @ bedtime the anxiety and feeling sick stuff started full force. And he's a kid just like mine always were, no nonsense bedtime, you do the routine then in bed and asleep for the night...every night. But the past few nights it's tough and he's up a lot thru the night. She said he's yawning a lot during the day b/c he's tired from poor rest and he looks terrible. She got probiotics today and has started giving him vit. D in addition to his multivitamin b/c she knows how our country on a whole lacks vit. D. She's still playing the wait and see game. He had a good AM and went to school. She's doing the wait and watch game. I am wracking my brain thinking of other stories where this is just a stage so I can say oh, that happened to so and so and it was gone in a few days, but can't b/c I am sucked in to the OCD, anxiety PANDAS/Lyme world w/ my own. So I try not to jump to that world but I also know that feeling all to well of "what is happening to my kid b/f my very eyes" and b/c that feeling is so awful, I wish I could fix it for her in case it gets worse. Plus, I always feel so bad for the kids. They are more confused than we are. It only fuels my fire more to know of another child personally dealing w/ childhood anxiety and possible OCD. It irks me to no end that not enough doctors, the government, etc aren't taking a proactive role enough to figure out how/why these chronic infections are causing this. I had another good friend who works as a nurse @ a psych hosp. for kids and I just want to go in there and test all these kids for chronic infection and give them a fair shot at life. Sorry just venting b/c it really bothers me. Can't save the world but can help one kid at a time.

@ Priscilla, We accidentally did our test via Quest 1st time around but they don't give the one crucial # that is needed for determining CD 57. We had to redo thru Lab Corp.

My kids were on Augmentin for PANDAS last summer. When more symptoms started to creep up b/f school year started, our neuro added Zithromax to the mix. It seemed to help. The plan was to remove the Augmentin soon after. Once we did, the kids slipped immediately, w/in a day for my DS and within a few days for my DD. So we added back in the Augmentin. Our immunologist, Dr.B said some kids need both but couldn't give a reason. A few weeks later (1 month b/f first IVIg) Dr. B added in steroid taper and yanked Zithromax. Big mistake. Major backslide--but was it adding steroids to the mix? We'll never know. Again put them back on Zith along w/ Augmentin. A few weeks later we saw major physical symptoms in kids from Lyme...major joint pain, electrical current feeling thru nerves from elbows to fingers, chest pain, etc. After having an LLMD review their Igenex results, it was apparent they had red flags for Lyme but immunologist didn't interpret that way. It's just different schools of thought which infuriated me but it is what it is and that's why this forum is invaluable bc we'd be stuck in this horrible cycle of not getting better without all these smart/determined parents. The LLMD now has them on Augmentin and Zith still, said NEVER steroids b/c it supresses the immune sys which is what Lyme does and makes things horrible, added Rifampin M-F in evening for their Bartonella (so that is antibiotic #3 in the mix) and also added Diflucan for yeast. They are on a few other supplements like a raw food multi vit., extra vit. C and D, Low Dose Naltrexone, Tagemet (helps acid and histamine control) and lots of probiotics. So yes, my kids are 3 antibiotics. Flagyl, the cystbuster, will be added in a few weeks.

I have been wondering about cord blood. I banked both of my PANDAS/Lymes kids' cord blood. I wonder how I would go about testing that. I'd like to only take a partial sample. Wonder if that's possible. Where would I send it? I had planned to ask Dr. J at our first appt in 2 wks. Is the main point of testing it that I would be able to see if Lyme was passes in-utero and which specific bacteria/co-infections were there since birth? Hmmm, good food for thought! I wish a university researcher would take this on and save me the cost!

Thank you ladies! I just emailed my friend a lot of info. She's my very best friend and she's strong so I gave it to her gently but knowing her so well, I know she'd want the good, bad and the ugly no matter what. I have felt thru this whole journey w/ my own kids and myself that I don't care what it takes, just give me the facts and I'll fix it to the best of my ability w/ the best docs I can get my hands on. Another person on forum, kindly PM'd me w/ her perspective as a child w/ this same type of OCD. I think that too is very good for my friend to see it from the kid's perspective. She's questioning her parenting and she shouldn't. She's a great mom. She's worried about disciplining it too much and enabling. We know that fine line so well. As your healthy kid suddenly acts so strange, the inital reaction is to discipline and say, "You have to eat. That's ridiculous. You're not going to get sick!" Or joke about it to shake it off. But when that isn't working, it leaves you thinking you're in the twilight zone. I still pray her son wakes up and it's gone b/c we know this journey is exhausting but as I told her, to have good info and advice so quickly into it is a blessing. So thanks!!!

I don't have experience w/ the PICC line or central line but I do believe in the power of prayer and tough love. So I'll do the praying and you do the tough love or whatever it takes to get him well no matter how much he hates you till he gets well and can thank you later on. Good luck and know he's added to my nightly prayers.

My really good friend calls me today and says that she needs to talk to me because her DS6 is having sudden specific anxiety and fear. He is completely anxious over the thought of throwing up. He is scared if he hears even a sound that sounds like someone gagging. He was on at a friend's house last Friday and he completely freaked out b/c he thought he heard someone make the sound. Then Sat. he wouldn't eat all day b/c he was afraid he could throw up. He keeps saying he's nervous and has a stomach ache. She was hoping whatever it was would go away. Then today it happened again when they were dropping his younger brother at preschool. He freaked out worrying about it. He did go to kindergarten for the day and did eat half his his lunch but he usually eats all of his lunch. Tonight he started up w/ saying he was nervous, sick and what if he (and he couldn't say the word throw up b/c it scares him too much). My friend is concerned. I never want to make anyone who sees anxiety and fear in their kids think that it's the same experience w/ PANDAS, Lyme and who knows what else but I can't help but go there in my head. I told her to see if it fades in a few days and if not find an intergrative dr. or DAN dr. or some dr. who would be open to do some blood tests. What is good preliminary stuff to do? I mean, I know what we've done but we had to jump in w/ both feet b/c it hit like a ton of bricks and bc strep was a chronic infection problem it seemed obvious to hit the PANDAS trail. But for her there's no obvious trigger. I told that aside from PANDAS and Lyme/chronic infection, I'd check yeast, food sensitivities, strep in stool. Any other advice to add? I told her I'd ask my cyber family first since you all would have better advice than her stiff pediatrician who she doesn't even want to go to b/c she's not thrilled about him.

Thanks everyone! The info helps!

So I finally had my kids' very belated b-day parties tonight...we were waiting till everyone was feeling better. It was a hit thank goodness. We had it a gym that has a lot of gymnastic equipment. I am feeling the effects of jumping on the trampoline and jumping into the foam pit! Within an hour I felt the pain of Lyme. It's so annoying when you realize your body can't handle what it used to. Anyway, a mom at the party, who happened to get Lyme while camping last summer (was fortunate enough to get sick and have the bulls eye rash and treated right away) said, "I heard your daughter was dx'd w/ Lyme." I told her that was correct and that my son and I were dx'd too. Then she said, "So is that in addition to all that 'other stuff' that went on in the last year?" (Other stuff meaning PANDAS--she couldn't remember the name.) She had heard some of the nitty gritty stuff but who knows how much people comprehend when it's not their reality. I started to explain and then got interrupted which I was relieved b/c I honestly didn't have it all straight how to present it. To her Lyme is a recent tick bite, rash, flu-like symptoms, abx tx and gone for good. What a great concept! Wish that was our reality. So does anyone have any advice on how to explain all this concisely without people thinking we're the loony sick family taking Lyme to the extreme??? I felt so overwhelmed talking to a non LLP (Lyme Literate Parent) that I couldn't even give a quick answer on how it went from PANDAS to Lyme. I couldn't find a way to simplify it. Not that I can always wrap my brain around it perfectly anyway! I will be seeing her @ an event next week so I know the question will be revisited... Any advice is greatly appreciated.

Are biofilms same as cystic form of Lyme or are they separate issues?

Cyndi, Sorry for all that you are going through. Poor Christian. It's so hard to say what's going on but I have 2 kids who were treated for PANDAS and never made enough gains from being on a one abx. We flipped around from PEN VK to Biaxin to Augmentin. Back in Sept '10 as new symptoms were emerging, specifically frequent urination and even bedwetting which was VERY abnormal, our neuro added Zith to the Augmentin they were on. After that, more Lyme-like symptoms surfaced. It's always so hard for me to distinguish whether it was just Lyme naturally progressing, the addition of Zith to the mix, the steroids that were added to try to control PANDAS and to prepare for IVIg but knowing that our family and so many others have seen so much improvement by seeing an LLMD, I'd find one ASAP to decipher through his particular symptoms. A good LLMD knows a lot about infections in general and can steer you in the right direction, I believe. I tell myself all the time that hindsight is 20/20 but while I was fighting to see top PANDAS doctors and spending a ton of money in that direction, I wish I had the wisdom to see our LLMD earlier b/c we could have avoided a lot of heartache, wild goose chases, missed school days, stress, etc. when we didn't have a handle on it, nor did their doctors at the time. Nothing is worse than watching your child suffer. But nothing is sweeter than seeing that turnaround and real progress. Maybe an LLMD could help weed through what's going on and turn it around. Best of luck! Kristie

I have discussed my inner ear pain w/ Dr. B in MD. It's always in my right ear upon waking if I sleep on that side. I have a high pain tolerance but this pain is BAD and piercing. Dr. B told me that it's most likely related to jaw issues and he sees it a lot in Lyme patients.

@ Stephanie 2--I can't answer about choosing btwn the 2 docs b/c we went w/ Dr. Beals private practice in Stevensville, MD. I am so grateful to Tpotter for recommending him. He's so reasonably priced but more than that (b/c we have spent so much already u almost just expect it to cost a fortune) he's logical, compassionate and it just feels right. I can't say I wasn't hesitant and skeptic at first b/b we had been to different docs on our journey but I highly recommend him. We do have an appt w/ Dr. J in a few weeks and just to be on the safe side, we're taking the kids to him. But if Dr. J thinks we're on the right path, I'm more than happy to stick w/ Dr. Beals. If not, well that will be interesting but from what I hear they are both open to us seeing different docs. I am pleased to stick w/ Dr. B for my own LD treatment. Hope this helps.