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EmersonAilidh

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Everything posted by EmersonAilidh

  1. Every now & then I have a good week. It's rare, but it does happen. That was the week before last for me. I refrained from posting on here last week when things started to sour because I didn't want to jinx myself. But, with the arrival of a new week, I know jinxing has nothing to do with it. I can't help but to think that Lyme treatment is making my P.A.N.D.A.S./PITAND symptoms stand out more. Does that make any sense? My physical symptoms, with the exception of the Narcolepsy, have been worlds better. But the mental ones have just nosedived. Oh my God. Pandas : You know what I'm
  2. Apparently it's just not a good week to be a panda. I understand all of this. It is important to check for infections & stuff, but I know that's not what you want to hear. I know what it's like to get so angry over something little, or even nothing at all. I know what it's like to feel totally hopeless & empty & alone for no reason, or for one that shouldn't be a big deal. I know how things build up. How I get frustrated because I forgot something downstairs, so I pull some hair out. Then I get mad at myself for being unreasonable so I lock my joints. Then I feel stupid so I hi
  3. I can't look it up right now (in a rush) but that sounds horrifying! I have MycoP (first thing -along with Lyme- that I tested positive for). Just makes your skin crawl!
  4. Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and
  5. Me. Showed Epileptogenesis in November of 2009 but haven't gotten it looked at since. -___-
  6. At the beginning of this week I finally maxed out on the dose of Noni/Samento(TOA-free Cat's Claw), fifteen drops twice a day, one day behind schedule. So I've got a couple weeks of peace where nothing is increasing or changing, phew! Whenever I finish this prescription of Doxycline, though, I've got to add in Omnicef & I'm pretty scared. If the uphill herbal dosage made me herx as bad as it did, what kind of terrors can I anticipate with the addition of the cell-wall inhibitor? & on that note, aren't those the worst kind of Lyme antibiotics since the Borrelia can just go into its cell
  7. Huh! It said there was still a week or two left when I posted it! No matter, though. If voting is closed then we won! & no, no sign in stuff!
  8. I've gotta say, EEG's are one of the few things I do trust in the neurological community. If they were "typically abnormal" then it wouldn't make sense for people with seizures that aren't petit mal to get diagnosed. I mean, good luck finding someone who has tonic-clonic seizures with a normal EEG. Every doctor I've asked, & there have been QUITE a few, has said that about 2-4% of people without Epilepsy will get an abnormal reading. My EEG in November 2009 was insanely abnormal & I've had a whole #### of a lot of trouble getting someone to duplicate the test specifically because they
  9. http://www.sponsafier.com/#/gallery/page:0/pageSize:12/sort:vote/ Toyota is making a racecar for whichever cause gets the most votes. Being from Texas I'm surrounded by NASCAR waaaay too much & have come to abhor racing, but it's still an awesome opportunity & so far we're number one! Second place has half as many votes as us, but don't get too comfortable & keep voting & posting!
  10. I'm gonna ask my Health Science teacher if we can do something special for it, even if it's just reading an article or something. If she'd let me do a presentation I'd totally be up for it! So far I have come up with no better ideas than a shirt though. I checked out the official events page & the majority of them are things I can't replicate or do on a smaller scale, even. Bleh. So awesome about all of the offers for Autistic families! The only thing I've found around here is that the Dallas Museum of Art is opening a few hours early exclusively for Autistic families. They're gonna h
  11. Does anyone have plans?! I know this year's theme is "Light it Up Blue", but I don't think anyone in our town would be at all curious, much less enough so to ask, about why our lights were blue. I was figuring I'd just make another t-shirt but wanted to try to do something a little more creative than that! Hmph. If we don't end up doing anything as a family, I might be volunteering at the Special Olympics that day but I was just wondering if anyone had cool ideas for things to do. Let's all brainstorm!
  12. Buster, you are AWESOME!!! I just wanted to add that one reason I don't log on here as much anymore is that I don't get on the computer nearly as much now that I have my iPhone. Sounds dumb, but it's true. I've also gotten in touch with some of the Moms I've gotten closest to on here on FaceBook & through the phone & all that. SarahJane, PixiesMommy, & BrownEyesMom are some examples of that. I definitely haven't forgotten about ACN though!!! Lots of times when I do log on I'm just watching. I've been doing my best to avoid posting "updates" everyday because believe me, I want t
  13. I always have problems recommending/advising against meds since I was on so many at once but Tenex is one of the few that I'm okay with supporting. My time on it was brief but it saw a noticeable improvement in symptoms. Can't remember the dose though :/
  14. & this SUCKS. Trying my damnedest to keep my head up though. Today, day 8, has been the most difficult yet. The headaches, that I haven't had in MONTHS, are back. My muscles ache so bad I can hardly use my left arm. I am more exhausted than ever. But I just keep reminding myself that worse is actually better. I have another seven days of increasing the Samento & Noni, so I think it should get a little better after that... Let's hope so, at least. The most notable little moment of clarity was when on day 4 I sat to play the piano & played a song that I haven't been able to in 3 year
  15. Even I'm not on nearly as often as I used to be. I think a huge part of it is getting cured or at least making progress & not wanting to focus on the problem by coming on here. As I've been on my way to getting better, I've noticed myself getting on here less & less. It's sad & sometimes it even feels like losing a friend but if I don't see someone on here for a while I take it as a good sign.
  16. Oh yeah! Forgot to ask... Will you be pursuing ART testing if the co-infection tests come back negative? I've heard those are just as 100% reliable as the Borrelia Burgdorferi ones! Yippee! except not really, just kidding, hahaha. Also, antibody screens or PCRs? I was lucky enough to test positive for Lyme & Mycoplasma the first time we ran a blood test, but it missed the Bartonella & Babesia. As far as I'm concerned, ART is the way to go!
  17. I'm still in the worse stage myself, the MUCH much worse stage really, so I can't offer much advice but you & your little one will be in my prayers & thoughts! <3
  18. Melatonin never did a THING for me. So consider yourself lucky! Hahaha. To avoid that groggy feeling I'd suggest trying some Valerian root. After being prescribed practically every benzodiazepine known to modern medicine with literally zero success, Valerian root did the trick the very first night! Definitely worth looking into. So glad to hear about your treatment! It's awesome to have someone starting at almost the exact same time as me, hahaha. Are you doing TOA free Cat's Claw? Mine is called Samento & I can't remember if I told you on FaceBook it not, but, it's a killer. (get it..
  19. The tingling/numbness in the extremities is very common & was a huge symptom for me! It got better, not worse, after treatment though. Have you looked into Bartonella? Me & PixiesMommy's daughter both get this weird, spiderweb looking pattern on our skin sometimes. I can't speak for her, but mine is mostly on my legs & is a circulation issue. PixiesMommy found the name of it but I can't remember... Either way, it's associated with Bartonella & since it's a circulatory problem it is related to the tingly/"asleep" feeling.
  20. Can't tell if that says AI3 or AL3. I've heard lots about AL3, which is just a fancy name for Omega 6 fatty acid (I'm ALMOST positive it's 6...). Nothing about AI3, though. Even if these do work I think there are much more reputable, tried & true supplements to look into. That's just me, though.
  21. We were recommended Alka Seltzer, too. Never bought it though. D: so many suggestions, so little time & moolah.
  22. Can't tell if you're referring to me or not! I'm typing on my phone so sorry in advance for any typos. Mine said it was preferrable to take it on an empty stomach, but, like you, it didn't bode well in the queasy department. All of the absorption tips sound awesome! I usually just eat a little snack with it, not a whole meal or anything big/heavy like that.
  23. Haha! Definitely enough microbes over here, too.
  24. Don't have time to read all of the responses but I get this ALL THE TIME!!!!!!! I've had a hard time getting it to show up in photos, though. It mostly happens on my legs & feet. Also, I've got burns on both of my knees & they turn way darker whenever I've got the spiderweb thing going on. I showed it to the nurse practitioner at my last well check & she told me I was cold. I like her but, um. I think I would know if I was cold.
  25. I am so sorry to hear that but also so happy to hear that you're seeing someone as good as Dr. Klinghardt! Best of wishes to you. <3
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