pixiesmommy

Here are two pretty awesome blogs (by the same woman) that I found tonight. She suffered with Lyme for 20 years, undiagnosed, and has had a year of treatment using herbal abx and alternative meds, with excellent results. I'm interested to read more of her stuff when it's not midnight! Here is her journey: http://www.spirochicks.com/ And here is her alternative med blog about general health (though she talks about how things apply to Lyme): http://www.mednauseam.com And another, from someone else entirely, that I found while doing a search: http://lymenaide.wordpress.com/ This link by kmom in another post, but excellent info about detox baths, what the bands mean, and a comprehensive list of symptoms: http://www.healingwell.com/community/default.aspx?f=30&m=1606610

My ears have been itching lately and now I know why, it's because Ailidh was talking about me behind my back! It's the mommy coming out in me. I mother people- it's what I have always done and what I will continue to do. Suck it up! Honestly, though, I am soooo glad to hear you are cutting back on sugar. AND to hear that you are feeling better!! YAY!!! You know I'll be blogging as I go through how we are going to do it. Much easier for me since I'm the cook, obviously, but hopefully I will make up some helpful tips as I work my way through it too. Here is a pumpkin pie recipe: http://bethsblog.typepad.com/bethsblog/scd-pumpkin-pie.html Here is an apple pie recipe but with a texture like pumpkin (my own!): http://chickiepea.wordpress.com/2010/10/13/perfect-autumn-pie/ Here is a fruit pie recipe that we love for summer months, but could definitely work for winter too: http://www.freecoconutrecipes.com/recipe_Strawberry_Cream_Pie_Gluten_free_and_Dairy_Free.htm So, here is the question- do you want dressing like you cut into squares or do you want dressing like Stouffer's-style loose crumbly stuff? I think you could do either, actually, if you make GF cornbread as your base. You can probably buy a mix for that or make your own. I have a garbanzo bean flour cornbread recipe on the blog too: http://chickiepea.wordpress.com/2010/02/06/goose-in-the-kitchen/ If you let me know which kind of dressing/stuffing you want, I will make up a recipe for you. Basically, if you mix up some sauteed veggies (carrots, celery, mushrooms) and nuts if you want (I would use pecans) with some veg broth and hard-boiled eggs, along with the crumbled cornbread and a raw egg or two, then press it into a greased baking dish, you should be good to go. Oh, and add a little bit of spice- salt, pepper, sage. I'm not eating corn anymore, so figuring out the stuffing is going to be tough for us. There are tons of already made GF breads out there. I think you can find one that meets your specifications. Call around if there are grocery stores or better yet, health-food/vitamin stores. If you don't have luck there, call yoga places and find out if they know of any health food stores you haven't heard of. Sometimes you can find ones frozen, and sometimes from a mix. King Arthur Flour is making a "gluten free all purpose flour" now that is in all the grocery stores here. Betty Crocker has some things out too for desserts (but watch the sugar and dyes- ick!) You know where to find me if you need help! Manda

I don't know what the half-life of the abx are (Augmentin) but she is in control until it is time for a dose (twice daily) and then she totally loses it. Today she was fighting me with full force to stay out of her carseat, and then once we got back home (from story-time) she fought me to stay IN. All too familiar. She refused meds, so I finally convinced her to drink some juice (refusing to drink- period- also familiar!) and got them in her that way. An hour or so after abx were down, she was back to her mostly normal self. She had a weird hand gesture today that scared me though- kind of flickering her hand at her mouth/nose (imagine fingers together like you would sprinkle something.) Sleep last night for her was one of the best yet, so I'm still hopeful that we are improving with the abx. There is NO doubt in my mind we are on the PANDAS path though.

I think it was a combo of catching it early and it not being as severe at Pixie's was. With Pixie, we jumped right into hdIVIG because there was no getting abx into her and no time to wait. By the time we found the PANDAS dx and him, she was so far gone we were thinking we would have to institutionalize her.

Thanks for the reminder about ibuprofen. We do give it to Pixie, but I didn't think of it for some reason with Peri. Again, I'll keep everyone updated.

Our almost 3 yr old daughter was seen today by Dr K and we have started a 14 day course of Augmentin for her and ran titers. She had overnight onset about a week ago (same time I got some sinus/headcold thing) and Pixie's behaviors began ramping up a little as well. OCD about things Fear of pattered things Fear of leaving house Change in likes/dislikes Tantrumming for hours on end (never had "terrible twos" here- totally laid back and happy kid) Night terrors Misc. fear of "everything" and everyone Sensory issues to the max! (sounds, textures, tags in clothes.... ugh) Refusal of hygiene things (hand-washing, teeth-brushing, changing clothes) list goes on.... *Told me she could not sleep last night b/c of the voices in her head!!! All in the past week. As some of you know, Pixie was NOT overnight onset, so this is new to me. But so many similarities too in the behaviors and so many of them that Pixie does not have anymore so they can't have been mimicked. Dr K worked her in today before he left town and is not doing a steroid course with her, but did the bloodwork and a trial of the Augmentin and then we see him again in 2 weeks to follow up. He thinks we can probably keep her under control with abx alone, which is great news. I really don't want to do IVIG again (at least hdIVIG) unless we are really in dire straits- especially with her being so young!! We're heading down the path of investigating Lyme for all of us too, but in the meantime, we can hopefully bridge the gap and Dr K will continue the abx for her as we need them. On another note, she was quite a bit better today than she has been in the past week, and I have been puzzling over why this may be, since we only started the abx later this evening. We did our very first dose EVER of strep nosode last night for the entire family AND she had cranial sacral work done by the chiro. I don't know if it was just a fluke, a combo of those things or just one of them, but thought I would mention (and document for myself) those things to take into account. SIGHHHH!!! What the heck will tomorrow bring!?

Okay, yes, he still suspects Lyme, possibly congenital for me, or so severe chronically that I am not coming up positive. He thinks I will test positive once on abx for awhile. Heavy metals are coming up for me across the board on every test, so we know I do have to get those fillings out and detox, but really slowly and carefully. Vit B is low- not surprising, my mom gets shots and that can be hereditary if you can't assimilate it. Vit C is low Yeast showed, so I am on Diflucan for at least a month I showed virus and bacteria in the Live Blood Cell test (I also test high for these with NRT, so not shocked on that one) I did show some parasites in the blood, but not many I showed lymphatic congestion Strep culture was NEG for my first visit and I wish I had had him run another this visit, but forgot. I am positive for Mercury poisoning, Ethylbenzene and m.p.-Xylene (have to Google those...) so definitely detox I still have to run the Lab Corp stuff on all the thyroid, regular CBC, etc etc. and Lyme test through them as well for insurance purposes. I am still doing 2 urine tests (one for mold, one for heavy metals) and a saliva test for yeast. IGENEX/Western Blot was IND on band 41 for IgM and neg evrything else for IgG was IND for band 31 and 39 and ++ for band 41, neg everything else I think that is it for now. I"m pretty sure I will get Vit C intravenously and B shots, plus a heavy dose of Abx, probably IV. THoughts?

Ughhhh... I came here to update and realize my papers are downstairs and I am in bed for the night and down for the count! Yes, on the dentist. In fact, I am going to a second one because the first one (biological too) wanted to pull them all out at once and I heard from another patient that she got really sick and had to detox. I'm definitely erring on the side of caution!!! Thanks for putting that out there though- so many people don't know and I wish I had known LONNNNG ago.

We are trading for a gift too, and then I saw on a blog where a mom created the "Sugar Fairy" to come that night and take the candy and replace it with a gift, so we are stealing that idea this year

I have all my tests results for ones we have done so far. I do have a ++ band (41) but will go into details more specifically when a kid isn't hanging on me! He found some other things that looked interesting, so more tests to be run before starting to figure out what path we are going to take to treat everything. I do have some pretty severe mercury poisoning myself, so that is on the menu too- especially getting these amalgams out.

I get all of my tests back today (the ones we have done so far- IGENEX, etc.) and am doing what is called a Live Blood Cell test that they read on the spot, then having a dr consult about what all of it means and a treatment plan for me and where we will go with testing/treating my family. I'm just a ball of nerves waiting for these test results and to hear what he has to say! I will be sure to update this evening.

VERY interested in this. We have cut so much already, but curious to see what connections she makes. I am afraid they are going to tell us no more raw milk since it can harbor Babesia. We can't do pasteurized because my 3 yr old reacts to it, but not to raw. Arghhhh! That would mean dairy-free, which is a PITA considering all the other stuff we can't have (gluten, sugar, preservatives, artificial/natural flavors, artificial colors, corn, xanthan gum..... oh the list goes on and on...)

Yesssss! For PANDAS daughter (poss. Lyme) and OCD grandpa

This is interesting to me, and I have read it too, because my mom is DX with Lupus (as of 2 yrs ago.) I was talking with my LLMD about history and the possibility that I may have congenital Lyme, and he said he was 99% sure I had Lyme without testing, and 99% my mother has Lyme without testing or having met her (based on history/symptoms alone.) My mom is in NC and is freaking out. I have told her not to worry, but to be glad we are getting some answers! She's waiting on my official DX before she pursues anything with herself.

Pixie's is less since IVIG as well, though I have noticed it gradually worsening as time goes one (we are almost 14 months post IVIG now)

I looked up Livedo Reticularis after you mentioned it in a previous post and was astounded. THIS is what I call the "spiderwebbing" that Pixie gets during a fever/exacerbation that NO ONE has told me a name for or seemed to think it was of any significance whatsoever. She has it constantly, but it worsens during those times. I have it too, but to a lesser extent than she does. I don't know what CD57 is. I'm so lost on the shorthand for PANDAS in that forum, and even more so here! I can't keep up!

I had to postpone my follow-up to find out labs for a week (the whole office decided to attend the Lyme conference), so I am just hanging out here in limbo until next Thursday. Arghhh! In the meantime, I am trying to think of things to ask. Here are some for ya'll too: -Did you dr treat your whole family based on one person's positive IGENEX, etc, or did s/he also require that everyone have every expensive test done? I still have to complete my 24 hour urine and saliva tests to turn in and there is a live blood cell test too that will be done on Thursday with instant results. I feel like I am just drumming my fingers waiting to get started on figuring things out. I remember feeling this same way when we were waiting for our initial consult with Dr K to get the PANDAS dx and figure out that path. The not knowing makes me crazy!

I can speak about the ART. We do NRT which is really similar. Basically what they do is test your muscle strength in response to different triggers. The vials have those triggers- which range from things like mold, heavy metals, bacteria, viruses, chemicals, environmental allergens, etc. When we do it, we are then prescribed whole-food supplements to help detox whatever our body is responding to, as well as to support whatever organs are affected by the trigger. For example, if I react to mercury and my thyroid is affected and my kidneys are weak, I will be given something like Chlorella to help chelate the metal, but also other supplements/herbs to help support my thyroid and kidneys, so they can work more efficiently. This gets expensive, because sometimes we are taking 5 of this pill and 3 of that, several times a day, and seeing the NRT once a week (not covered by ins!) but we have seen excellent results, especially concerning Pixie's chronic fatigue and random tummy aches. We use it less as a diagnostic and more as a supplemental therapy. For example, I didn't react to Lyme, but that doesn't mean I am not going to pursue it elsewhere with other tests. NRT has done wonders for my insomnia too.

I was supposed to be at an appt on Thurs, but the entire staff of my LLMD decided to go!

Oddly enough, I have had two realllly good days (energy!!) since having this done. Don't get me wrong, it could just be a fluke, but that is the most energetic and best I have felt in a year or more, so it seems a little odd to me that it is "just" a coincidence. I may have another to see what happens and go from there. The jury is still out on whether I want to pay $150/pop for this though, even for a few days of sustained energy and motivation. (Let's see how long it lasts and how clean my house stays, how my temperment with my kids improves LOL)

I'm really confused. This was done at the LLMD office and they told me it was both diagnostic and healing. I had a session yesterday where I just sat hooked up in a chair and the woman typed stuff into the computer after leaving me hooked up alone in the room for 3 minutes. She then read the screen and wrote down different areas that needed 'work' and told me she was correcting things as she read them off. It had categories for things like toxins, susceptibility, bacteria, viruses, etc. and huge long lists under each for things that pertained to me specifically. I didn't "do" anything but sit there across the room. Most of the things I read online about biofeedback say you concentrate or something? I know it's used for headaches and it has been recommended that I do this for years for my migraines, but I am not understanding how it is supposed to work. I have the card of the person who did it and her name has "LMT, CBS & Instructor" behind it- which means nothing to me. I don't think she is an OT or PT. It says "LIFE System" on the card too, which I assume is the machine she was using. She said I was supposed to do 4 more of these for the full benefit. Again, I'm very confused.

I'm still in the process of testing, but wanted to document what is going on so far. I am working on myself first for a couple of reasons- a- I am still breastfeeding my toddler and want to eradicate Lyme from myself if I have it for that reason, so that I can pass GOOD things along to her while I still have the opportunity! b- I would rather see what this entails with myself before I drag Pixie on a journey that may or may not be worth it (and for the time being, she is relatively stable since having hdIVIG in Sept '09 w/Dr K and on prophylactic abx.) I have had one VERY long appt with the LLMD (about 2 hours) for a consult, blood-work done with several labs (Igenex, Labcorp, and Metametrix), and a biofeedback session today. I go in 2 weeks for something called Live Blood Cell Analysis and a follow-up with the LLMD about what my actual diagnoses are and where to go from here. The things I know so far: Without the tests having been done, he said he was 99% sure I had Lyme and co-infections, but that I also had heavy-metal poisoning and probably a lot more than that going on (some or all of which could have transferred to my kids.) I can't process b-12 and will have to get shots (like my mom and, apparently a lot of the population!) According to the biofeedback testing and the few sessions I have done with the NRT, I am also harboring quite a few parasites as well. That is about all I know "for sure" at this point. I will keep you updated as we go!

I *think* it is for pain management. It's not for PANDAS symptoms, but for Lyme-related things for myself.

I had a biofeedback session today but walked out of it kind of confused. Can anyone tell me anything about this?? They want me to do 4 more sessions at $150/each (probably not covered by BCBS.)

Is he a neuro? Also, does he diagnose, and if so, how?