pixiesmommy

I'll have to look into the Gerson stuff- sounds interesting. I'm a firm believer in diet helping, as you can see from my blog One of the first things our first LLMD told me to do was get the mercury out of my mouth. I have 9 definite mercury/silver fillings and several other white ones that are questionable. I was also just told by a biological dentist that the pain in my jaw is not TMJ as I suspected but strep infection in the BONE. Niiiiice. I'll be having fully sedated oral surgery soon and then start removing amalgams and detoxing mercury. I have a blue line around my lips from mercury toxicity and have had 2 break (one during each pregnancy- how convenient.)

I'm torn about this because we also have a dx of PANDAS, but I would love to help if I can.

He emailed back and said Cipro does nothing for Lyme, so it won't hurt me to be off it.

I didn't see it, but I know some of the PANDAS moms left comments on Oprah's site and at least one of them was removed.

I know my question was about as clear as mud. I'm basically wondering if I am making things worse by going off abx for 3 weeks, just to probably go on them again. I did email the LLMD and asked him the same. I'm so frustrated and emotional tonight. Feels like I'm up against a brick wall either way.

So I have been on Cipro for 7 days for strep, and prior to that was on 2 courses of Azith (one for possible mycoplasma- had bronchitis, and the other for strep.) Anyway, I have never been on Cipro before and am on my last day/dose and am in increasing pain in my joints. (I am allergic to all abx but Azith and Cipro, if you're wondering why those two...) And I have been an emotional wreck (read: a total witch) and think I must be herxing. I have tended to feel better on Azith, but this is HORRIBLE. My joint pain is the worst is has ever been. My LLMD appt for myself is not until March. I'm thinking of dosing myself with something in the meantime, but am a little worried that whatever I take might interfere with testing. I have done my Western Blot/Igenex already, but not co-infections testing yet. I was thinking of emailing the LLMD and just asking him directly, but since I'm not in his care yet, my thoughts are that he won't give me advice without having my history, etc yet. Thoughts? I did take a long hot epsom salt bath, but haven't noticed much change in the pain yet. I have been able to lay low with a heating pad rotating through my joints today as they ache, since Pixie is also laid up on the couch herxing. Arghhhhhhh!

I'm excited for you for both your son's health and because we're using the same dr. So great to hear that things are actually helping!!! Yay!!!

Pixie tested positive for small and large parasites with NRT and we had good success w/energy levels going up when she was on VRM1 and VRM2, in rotation with each other and without either (14 days on one, 7 days off, 14 days on the other.) These are sold through Standard Process.

Thanks! Will definitely keep reading and check out her works. My blog link is in my signature at the bottom of each post, although it is mostly how to cook GF at this time. We follow Nourishing Traditions, so most things are very meat/dairy heavy, though there are some veg/vegan items there, and some discussion of herbs/spices as I learn more about them.

Can anyone point me to studies or documentation about garlic, onions, and/or mustard feeding parasites? I see this mentioned on the board in several posts, but when I search I find that these are used to treat parasites, so I am confused and looking for the other side, so to speak Not at all arguing- just want to read both sides for myself and then decide. We eat a TON of those things here because I thought they were good... and, well, let's face it, I'm a food blogger about this stuff and I want to inform my public! LOL Thanks so much! Manda

Labcorp co-infections tests came back tonight. Pos for Mycoplasma (surprise, surprise, right?) and HHV6 Neg for others including Bartonella, Babesiosa. Emailed dr and asked if he thinks these are false negs that will be provoked into pos by the abx and if we will retest. Her vit D was low too, so he is putting her on supps for the coinfections and a rx dose of D 50000 IU/wk.

Haha. I *am* corn-free and it is HARD! I am skin-picking again this week because I am on Cipro and I guarantee you it has corn. If not, I know my probiotics do. When doing meds/supps it's impossible because that cellulose casing is CORN! Pixie is able to tolerate apples in moderation now and I swear I think it is due to not having had gluten for a year. I think her gut had to heal in order to tolerate the salicylates better, BUT having said that, I know that is not the case in all kids. Some have to do GF/CF and Feingold forever. Feingold is awesome though. It was $$ at first to get all the stuff, but once you get the hang of it, it's totally worth it and you don't really have to order the stuff again after the first time unless you eat out a lot because you can kind of tell what caused the reaction if it's just food from home.

All day long I have been reading nothing but Lyme, Lyme, Lyme. Something struck me a few weeks back, when I was having history taken at my dentist (I have mercury poisoning and am getting my fillings removed by an integrative dentist) and she was asking about my symptoms and Lyme and all of it. I had a memory pop up of the start of my migraines and how I had CT and MRIs done and the tech on one of them asked if I was there due to a tick bite. When I said no, because of migraines, she got a very puzzled look and seemed like she wanted to say something. I was about 12 at the time and started questioning her, at which point she just excused herself and said my dr would have to talk to me about the results (of course.) I asked my dr and he got MAD and I was worried I had cost her her job, but told me she did not know what she was talking about and wasn't supposed to try to read my results, etc. We all know now that the techs can usually read them better than the drs themselves so you get where I am going with this. It looks like MRI can actually be DIAGNOSTIC for Lyme because lesions can show in your white matter. I'm tempted to run out and get an MRI just to see if I really do have these lesions. If I knew which dr ran the stupid thing on me way back when, I would demand a copy. Grrrrrrrrrrrrrrrrrrrrrrrrrr

She has been in my bed ALL day. She can be melodramatic about pain, and some of it is sensory perception too, for sure, but this seems real. I'm hoping it passes, or at least fluctuates, so she can have some good periods too. I am not sure how we would get through weeks of pain this severe. She already has chronic back pain (since about age 2) and has to have a chiro pillow on the back of her desk at school. I just gave her her mid-day dose of abx and am waiting until I can dose her again with probiotics and glutathione (although apparently oral is not that great anyway....) Still no other symptoms, so I am not thinking flu. This is not the first time she has had a fever with no symptoms, so even the thigh pain is SOMETHING new. When I have had the flu, I have had joints ache first- knees, ankles, wrists. I don't think I have ever had thigh pain w/flu.

Thanks!!! I was on the fence about the ibuprofen, because I want the fever to stay if it's helping... but obviously if there is pain that she can't tolerate, that means we dose. Encouraging her to drink, but that is a tough one. She won't drink much even on the best of days- that has been a big symptom too. Going to make a smoothie and sneak in some Vit C powder with lunch. I just ordered the Colostrum a few days ago. Curious to see if it will help too. She told me she was hungry, so I'm trying to keep her on fresh foods today as much as possible. She had a slice of bacon for breakfast (I was iffy about it- I know pork is so bad) and a homemade GF granola bar with chocolate (arggh! caffeine!) and some mango, so fresh for the rest of the day if I can. I wish she would do leafy greens. I can't sneak them into smoothies either unless I do a purple one maybe, but I have none in the house right now. Maybe I will throw in some spirulina powder though. Again, just thinking out loud.... Glad SOMETHING is happening. Hope it's not flu and really a herx. Not that I wish for herx, but it means die-off, right?? And that is good!!!!

Pixie has been on the azith/ammox combo for a week and 2 days now. She's not on ANYTHING else other than probiotics 2 hours from her abx. A couple of days ago, she mentioned some thigh pain and it increased to the point where she asked us to pull out her trundle bed (she has a loft bed she usually sleeps in, on the top bunk) so she would not have to climb the ladder because her legs hurt so bad last night. She asked AFTER she was up there, so she slept there last night. This morning, she stumbled into my room and started crying that her legs were KILLING her and she barely made it down the ladder. I snuggled her and promised to pull out her bed for tonight, then went to help my 3 yr old potty. When I left her in my bed, she was cool and no fever that I could feel. When I got back and put my hand on her head again, she had spiked a fever in that 5 minutes I was gone, and I took it at 102.5!!! I gave her her abx, a Sambucol (elderberry extract) tab, and ibuprofen an hour ago and she is still at 101. No other symptoms but the thigh pain. I am thinking about giving the activated charcoal and trying to put her in an epsom salt bath. I'm emailing our LLMD too. She could very well be starting the flu, but it seems more of a herx to me, since the pain is not full body. What do you think?

Two things that helped our tics (Pixie's are almost gone, but I have tics too) -Feingold program to decrease intake of salicylates (more for Pixie than myself, but I have an issue with apples in particular) -Avoiding corn and corn products (very hard, but very worth it- I have dermatillomania and it disappears when I don't have corn) Thanks again for all the feedback!

DH since he has been with me has experienced these new symptoms (We've been married 5 yrs) increase in GI issues SEVERE itching, especially at night some sensory issues that come and go random sharp pains that come and go back pain- severe and debilitating at times (to the pt he got cortisone injections for awhile) pain and burning in soles of feet increase in headaches lethargy and intermittent narcolepsy arthritis in joints the general feeling that he is suddenly "falling apart" for no apparent reason

I do totally believe in it- I did it for myself and mine picked up a chemical that is in paint solvent. The chiro/NRT was puzzled about this and so was I... I came home and googled the chemical and found out what it was in, and it made sense then. I used to have a job painting Tom Clark gnomes from home and used paint solver CONSTANTLY for about 2 years straight- at the height of when I started having neuro symptoms. Go figure.

I was reading the same info and wanted to try it- can't hurt, right? I know that abx can deplete glut supplies even further, as well as vaccines (which she had until Kindergarten) and Tylenol. I just learned about the oral thing. I wonder if I give it at the same time as the D if that would help it along orally.... just thinking out loud here!! A friend told me there is a cream too, but not sure how she would tolerate that. I know injections are the best, but that isn't happening unless the LLMD orders it, which he certainly may, just not sure yet. Thanks for the clarification!!!

This may have come up before, but wondered what you all think or what your drs have had to say, if anything.... If taking glutathione and/or activated charcoal AND abx, how far about do these need to be so as not to detox the abx? Thanks!!

We did something similar- NRT (nutritional response therapy) with a chiropractor, and had good results in the beginning, but after a year, we plateaued and stopped. It can be really expensive because you are buying supplements, as well as sometimes taking a LOT of supplements at a time.

A friend recommended this for Pixie to help with her immune system and I wondered if anyone took it and if they could tell of improvement on it, and what kind/brand you take and where you buy it? I see Vitacost has some. Thanks!

Our new Dr said this is an unreliable test for children. That is all I know.

D- you read my mind (as usual!) I was just talking with Dr P yesterday about how I should let Dr Cunningham know Pixie is absolutely positive for Lyme. Does anyone have Kathy's email address and can you please PM it to me? I am sure I have our correspondence somewhere and could find it, but I have yahoo email and it lives up to its name when it comes to searching. FWIW, we have not let Dr. K know because he was extremely discouraging/dismissive about testing and pursuing anything outside the realm of PANDAS when we have brought those things to him in the past.