pixiesmommy

I don't have much advice, because we are very much there. I just wanted to say I know what you mean about treating them like a 3 yr old. My PANDAS/Lyme dd is 10 and I have a another daughter who is actually 3. Guess who is easier to deal with, more attentive, more flexible, and can communicate? It's really sad and frustrating FWIW, we don't let my 10 yr old get involved in anything like that where someone depends on her, because it's totally unrealistic. We never know how she will feel on any given day.

It really seems like everyone has their own experience with it. I avoid it because any form of strep really freaks me out, and some parents say it causes an exacerbation, while others say they see no change.

Whole Foods carries it, a lot of health food stores do, and Woodman's stores in IL carry it. AND you can buy it on Amazon w/free super saver shipping: http://www.amazon.com/s/ref=nb_sb_ss_i_0_26?url=search-alias%3Daps&field-keywords=native+forest+coconut+milk&sprefix=native+forest+coconut+milk

Coconut milk is dairy free. If you buy it in the can, it has less additives than buying it in the carton. Look for a green can called "Native Forest" brand, which has a BPA-free can lining and is organic.

Yes, we do a lot of coconut- it's supposed to be anti-parasitic and it has great fat too. We use the Jarrow brand for other things and it seems pretty "pure" as in it doesn't have a ton of nasty additives.

Super!! I will just link to this instead of pasting it in then. I have several posts in progress- particularly the Lyme and PANDAS ones I need to get posted SOON!

I know what you mean about not being able to take care of yourself. I don't think many of us can. I get that advice all the time, "Take time for you; take care of yourself too; put on your oxygen mask first- so to speak." It's so much easier said than done. I hope you start feeling better soon. ((hugs)))

I've been giving it w/our high dose vit d and glutathione. I can split this though, since I am not on that many things. Will keep that in mind going forward- THANKS!!! I've been taking it earlier in the evening- like 5pm instead of before bed, since I was feeling restless legs from it. The past two nights, I have had heartburn after taking the double dose in the evenings, but it's not terrible (yet.)

Can I ask where those descriptions of the bands' meanings came from? I would love to post these on my blog, but would like a reference and to make sure I am not stealing someone's info Thanks!

That's awesome!! I'll be curious to watch her progress from afar!

We see a regular chiropractor and it does seem to help- especially cranial/sacral work, with insomnia in particular. I just had someone refer me to a chiro neurologist, so we might check it out. We've been to several chiros through the past few years and some are better than others, and some just want to sell you tons of supplements and gadgets... it's hard to know what things are going to work unless you do invest in them, unfortunately. Sounds interesting though. I have heard excellent things about various chiro techniques. Keep us updated!

WOW! So glad you are seeing such great results!!! The only thing I know about tea is that it can have high levels of lead and fluoride, depending on where it is grown. I have read that this is true even with organic, unfortunately. Maybe there are brands that test for toxins? That would be my only concern, and if it's a concentrate, that means you are receiving even higher levels, of course.

Interesting. I had not heard that about ART testing. Not sure what I will do if they come back negative, actually. My brain is not that far yet!! I have a bottle of Cat's Claw- just the regular thing you buy at CVS or whatever. It's capsules. It's just sitting there and I'm terrified of it. I might take one next weekend and hope I don't die. I'm only half kidding. I hope your herx ends soon. (((Hugs)))

This is just something fun and silly to do on walks that I started with my 3 yr old but Pixie (10) thinks it's fun too... You can take a digital camera with you to make it more fun, but here is what we do... -Try to find shapes of all the letters of the alphabet but not actual letters on signs, etc- so a manhole would be an O, and a twisted vine might be an S, a crossed lamp post would be a T, etc. -You can do the same with numbers for a bigger challenge If you take pictures, you can then put them on the computer and play around with them to make words like "love" or "cool" whatever and then print them and make cards, etc.

So awesome about playing the piano piece!!! I'm just on day.. 4? 3 or 4 and I herxed right from the start. Muscle pain is worst today but not quite so foggy feeling. I'm not on the Cat's Claw yet- waiting a week to start it. You are much braver than I!!!

Yes, I was referring to you. Were your ears burning

That's good to know because he was recommending alka seltzer gold for herx.

I was searching for fermented cod liver oil and hit on this page which has some LD supplements- both for killing parasites and for herx. Wondered if anyone has taken any of these? https://www.drrons.com/chinese-herbs/default.htm

Wow!! I can't wait to have my first "good" day. The best day I have had in years was the first time I got biofeedback- I had 2 really awesome, energetic days immediately after. The second time did hardly anything for me though

Just had the blood draw for co-infections. He said he would be shocked if I didn't test positive for Babesia due to my history of "sleeping sickness" as an adolescent/teen, where I would sleep for 16 hours/day and still be sleepy. I'm really curious to see what does show up. Nausea today right after taking doxy, but I tried to take it on empty stomach. I had to eat a piece of cheese because I seriously thought I was going to faint. Passed pretty immediately. It's like weird things are coming in waves- here one second and severe, and then gone the next like it never happened! I didn't expect to herx this soon or this badly. I also had a 10 minute rash this morning on my chest that I had Pixie snap a photo of. It was already fading in the photo- when it first showed up, it had a clearing off to one side like a very distorted bulls-eye. It was itchy though, so not sure what that means.

lemon water is supposed to be good glutathione and vitamin d given together are supposed to help herx too alka seltzer gold is supposed to help for an alternative to epsom salt baths, if it would work, maybe he could soak his feet in a tub of epsom salt water while watching tv, reading, etc.

My bottle says take on empty stomach, but someone told me their LLMD said it does not matter. I find that when I don't eat with it, that I get really queasy. Am I defeating the purpose to eat a little something with it?

Cleaned up my inbox. Sorry about that. I don't think I have used it much since they changed the format and it took me awhile to figure it out!

I have an online friend who is struggling with severe unexplained symptoms and needs and LLMD. ILADS was unable to help her, stating that she is in the "home" of the CDC. Does anyone have a dr who flies under the radar here? Please PM me if you know of anyone who may be able to help her. Thanks!

Night 1- woke up on the verge of falling asleep w/panic attack type symptoms- heart racing, VERY restless legs and emotional. After about an hour, decided to take melatonin (it makes me groggy the next day, so I rarely use it.) Finally went back to sleep, but alternated b/t feeling too hot and too cold, and horrible headache. Day 2- Headache in waves- very sharp pains running through head. Felt like I had cotton balls in my head. Spent a lot of time with herx protocol and in the tub in epsom salts. Dull headache and exhausted by evening. Night 2- Slept better. None of the symptoms of before. Day 3- More tired than usual and dull headache off and on. One brief moment of severe nausea early in the day, but passed quickly. Stabbing pains in calf muscles briefly after dinner. One wave of unbearable exhaustion, but passed after lying down with closed eyes for about 15 minutes. VERY fatigued.