pixiesmommy

That was the name I was thinking of! I was wondering if it was associated w/Lyme or not. It did seem like a herx, but I have no idea. I emailed it to the LLMD, even though he now does not reply and I get a canned message back- figured he could access it during our appt next week though. She may have endocrine issues, so it could be that.

The first LLMD did not test her for co-infections and the second one says he believes she is actually truly negative for everything except those she tested positive for. I asked about her being on abx when testing and if we could get a false neg for any other reason and his answer was no. She tested pos only for Mycoplasma and HHV6 co-infection-wise. She has a lot of Babesia and Bartonella symptoms, however. SFMOM- Hers is smooth, but she and I both get a very weird sandpaper rash on our cheeks when we are positive for strep. My 3 yr old daughter gets one single blistery-type pimple near her temple when she is positive for strep. I have heard that sandpapery rash on trunk is indicative for strep in a lot of children.

Pixie gets a spider-web like look to her skin quite often, usually on her trunk, but sometimes you can see it on her face a little. It's usually worse when she is cold. This was dramatically more noticeable and she was not cold at the time. I noticed her hands while we were eating dinner and I grabbed the camera. We watched in amazement as the "spider-webs" darkened almost to purple during about 20 minutes and then faded. She said she did not have any change in sensation during this time, no pain, itching, etc. This was March 1. Today she still has a noticeable "rash" but her skin is also mottled like as if she has a million tiny bruises. I will try to get a photo this evening if it is still around- this morning was too chaotic with trying to get her to school. Here are photos from two evenings ago: Hopefully you can see the slideshow So, the question is- what "rash" is this? Does anyone know a name for it, or what parasite it is associated with?

Pixie wants me to make her a PANDAS shirt this weekend, so we will work on that together. She actually goes in tomorrow for adrenal testing, so maybe we'll design it together while she is hooked up to the IV. Mine is a Chronic Lyme one and has all the symptoms I have experienced listed on it- it turned out pretty well and I wore it to DH's school since I was there on an eco-panel he was doing for his freshman yesterday, as a speaker. I'll try to get some pics of it soon!

I'm absolutely convinced that the turning of the pages is a herx. We are pos for Mycoplasma, Lyme and HHV6. I have no idea if Pixie was pos for Mycoplasma at time of IVIG because we have not been able to have any access to her records from Dr K even though we have requested them numerous times. I am starting to believe he does not keep records or does not copy them for us to protect himself legally somehow.

All of our drs ( 2 psychologists, 3 psychiatrists, family dr,3 neurologists, ped. sleep dr, Dr K, biofeedback tech, 3 biological dentists, homeopathic ped, 2 LLMDs, 4 chiropractors...) all have either recommended it or reassured me that it is safe once they hear we are using it. My younger daughter started using it at 2 yrs old and was about 30 lbs. She has taken up to 1.25 mg at that weight. We also do chewables from drugstore.com (they have a mint and an orange flavor.)

I think it might be a herx. I was just reading Coping with Lyme and one of the symptoms she mentions is hoarseness, so it sounds like you are on the right track and it is drawing something out. She says that herxing is a great sign because it means the meds are DOING something.

Hydrate, hydrate, hydrate!!! Have them use EMLA cream for her so she won't feel it when they stick her. ((((hugs)))) to you and her I think even half is better than nothing.

This is awesome. It should def. be pinned. I loved the last page with the alternative/supplemental things. I'm checking into all of them and some of them (I was happy to note) we are already doing! Yay!

Just wanted to mention that I am not an expert, but I see OLE mentioned, and I was under the impression that could not be taken in conjunction with rx abx?

It's a symptom of Erlichia, a co-infection... read this: http://en.wikipedia.org/wiki/Diaphoresis Googled that term because I saw it in the link to the slideshow that was just posted. Maybe it's drawing out another parasite?

16 was tough for me too because I was sick. Let me tell you something, Dearie... those high school fair-weather friends, those will come and go. It feels HUGE now, but it's not in the long run. Your head is EXACTLY where it should be- GRADES. Those are going to serve you so well. Poo on the girls who didn't show. You remind me so much of me, only I gave up on school and barely graduated. I started out strong, but my illness overtook my motivation and I was left a depressed shell of myself. I just want to grab you and hug you and cheer you on!!! High school is fleeting- enjoy what you can of it and toss the rest aside. You're amazing. You inspire the ADULTS with children here. That is not a small thing. We see you struggle and make it- and come out on TOP. We see you fall and you pick yourself up and brush yourself off and you come out twice as strong! Be proud of who you are and the distance you have come. It takes strength to come here and be honest about what is going on and ask for help. It takes strength and motivation to keep begging adults for help when you know you need it. Those are EXHAUSTING and HUGE things. Things a child should not have to do. I know, I have lived that and I was not as sick as you are. It is frustrating and awful and you wish you could just be like any other perky boobed 16 yr old but you feel 80 inside. Keep pushing. You are going to rock this. You are going to get this treatment and kick PANDAS' and Lyme's butt from here to yonder and be an amazing adult and spokesperson for kids. These things that happen to us and we sit and pity ourselves and wonder "why me?" come full circle someday and we have this moment of enlightenment YEARS later and go, "Oh. Huh. That's why."

I just want to say that Pixie is 2 weeks in and mostly exhausted, but nothing major happening with her yet. I start mine in 2 weeks myself, so we can all hold hands (online of course!) through this. I will dig out Pixie's 504, but honestly I think we are going to keep her home. Is there an option for homebound where a tutor comes and gives you your homework? I did that for a year in hs when I had mono and was too weak to even lift a book. It sucked royally and I had to fight the district to get it, but it was SUCH a relief. Hugs, Manda

Check his shoes to see if they are soaked. Pixie had wet feet the other night and turns out her sneakers' lining was SOAKED and she didn't even notice (uhhhhh sensory? ) I know you can detox a LOT through your feet. Maybe have him take some foot soaks with epsom salt?

We asked him about testing for Lyme and he was discouraging. I have not yet informed him that we did it anyway (he knew we would- we've told him all the other things we've done ) and that she was positive.

We used Dr K a little over a year ago. I'm open to answering any questions about him you have We were in total crisis and he got us in quickly for a steroid burst and then worked us in the next week for IVIG after her steroid burst was conclusive for PANDAS.

We contacted the school tonight about the possibility of home-bound for the remainder of the year, and if they even want her back there with these active infections. I worry not only about sending her to get infected, but also possibly infecting others.

Curious if you and your DH came up pos too.

This is bothering me on a far deeper level than Saving Sammy, etc. ever did. I really need to step away from it. I did not watch the show, by the way, just the previews online that I was linked to. I have such a hard time swallowing the fact that someone would just STOP at energy therapy (not that it doesn't work- it totally may, but look for an underlying cause!!!!) and not go on to try to help their child. I hope that she will take our PANDAS/Lyme, etc comments to heart and her son gets some help.

I don't have anything to add, but LOL about the graffiti! There is a product to remove paint from concrete, etc. They probably know what it is at Home Depot... I can't remember right now!

I realized when replying to a post here last night that I am not sure if I ever came back to the PANDAS board and specifically updated about Pixie. We received a very positive Western Blot/Igenex Lyme test for her in Dec. We started with one LLMD that we were not entirely pleased with (to put it mildly) and are now about 2 weeks into a combo of Ammox and Azith for her. We just got the co-infections test back a few days ago, with her positive for hhv6 and mycoplasma, even though she was on abx when test was done. We will be adding supplements soon: colostrum, prescription vit D, glutathione, activated charcoal Her moods have been pretty stable since 6 weeks post-IVIG. We have had NUMEROUS bouts of strep for the entire family (we are all asymptomatic- her leg pain alerts us we are positive.) It's to the point where we cannot get a negative strep test anymore, no matter when we go to test or what treatments we try for all of us. I tested myself for Lyme and came back indeterminate, though I have been told that can mean I am positive, so I will also be starting treatment, and we will be getting the other family members tested as well. The biggest problems we are facing at this point are exhaustion, very low frustration threshold, some mild sensory issues, and very mild tics that come and go. The challenge is getting her to school each day, since she needs very strict schedule and predictable situations, so that is frustrating, along with not knowing what the day will bring mood-wise. We feel like we have been out of the woods for a long while now as far as rages, but there are still bouts of her becoming non-verbal or having a tantrum that is NOT at all age-appropriate. There are tears multiple times a day due to the low frustration threshold, etc. Exhaustion is a tough one too- she sleeps for 12 hours and still that is not enough. She tires easily and due to her arthritis is unable to do much in the way of exercise at this point, and even carrying a backpack is difficult on the best of days. We will continue with the diet we have maintained for a year, and see the chiro once/week for regular adjustments. We recently added cranial sacral therapy for her weekly as well. We stopped the NRT about 2 months ago, as she was no longer testing for anything other than occasional adrenal fatigue. We had a saliva test that was a flat-line, so we pursued blood testing for her adrenal gland and it is not what it should be. The endocrinologist ruled out Addison's (what we first suspected from the saliva testing) and thinks she has Secondary Adrenal Insufficiency, so we are testing for that using a provoked ACTH test next week. If that is normal, he suggests we pursue scans, etc to see if her pituitary gland could be the problem, which he claims would be unrelated to other issues and a birth defect. As far as school goes, we are not pressuring her to go. I feel like if she can get there 3 days/week, that is a pretty good success for us compared to what was going on a year ago. School has been great to work with this year- we pulled her from her gifted/private school (which was a NIGHTMARE by the end,) and actually moved in order to get her into a better public school district. She is a grade-level above peers since she started school in NC and the age cut-off is different there. She's gifted, but emotionally immature due to a variety of factors (which you are all familiar with, so I won't ramble on that!) She's supposed to enter middle school next year, but I have my doubts about whether this is a good idea. I'm pretty strongly opposed, actually. I just feel like, overall, there will be less support for her due to the changing of classes, etc. even with a 504. I'm terrified that dumping that much stress on her will create another crisis for her. We're toying with the option of homeschooling, of just pulling her from school for a year to rest and heal, or putting her into a local Waldorf school that seems a better fit for her/us. I think I managed to hit the high points

I have already had 2 rounds of ozone injections and a laser treatment on my jaw bone. I also have what is called "residual cysts" - one of which caused the infection.

My first is definitely worse off than my 3 yr old, though we suspect PANDAS/Lyme for her as well. I don't know the cost yet. I'm sure it won't be cheap! We're looking at a whole-house water filter too. I have a name for one that gets fluoride out too, but haven't done research on it yet. Right now, we use a Berkey w/fluoride filter for our drinking water, but all our other water smells like pool water- so toxic. Ugh. Yes, it is all inter-related. Some day I am going to post about all the crazy "coincidental" things, but it may end up being a novel. I think we have officially de-railed this thread. Sorry!!!

My thoughts- Is it dye-free? It could be a dye or something else besides the med making him react. You can get meds in white tablets usually, or if not, a compounding pharmacy can help w/getting pure meds without dye or gluten, etc. Ibuprofen, Benadryl, epsom salt baths can help w/herx and inflammation. We went through several abx before we found one that worked, and I think most of us would say that here. Don't give up yet. I would also absolutely do the Lyme testing. We did the Igenex one and found my daughter was ++ on a lot of bands, and this is one year after her hdIVIG and a year on antibiotics. She also just came back positive for HV6 and Mycoplasma, also while still on antibiotics. Hugs.

Our LLMD said CD57 is useless for children. I don't know much about it personally.