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Rpm999

Anybody Else Have These Neuro Symptoms?

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i see plenty of people say the basic neuro symptoms, but i have had some crazy ones since i've been sick

i've felt really strange, for example my thoughts, reactions, responses, it all seems really different...i know i have brain fog, but sometimes i have the a word right there but just can't get it out, i feel stuck, if that makes sense...it just feels like everything is floating around me, like i'm in a different world, i can't even remember how things normally feel and can't grasp things at all, whether i'm reading something, watching something, somebodys talking....it all floats by me, i can talk for HOURS and not remember one thing, or think of something to say and a second later forget it all....i try watching something, and the screen feels like it's bugged out....it's like i hear people say they had neuro and vision problems, but what about the really strange things, where it's almost impossible to even explain? somebody could give me a billion dollars right now and it wouldn't change how i feel, and i'm not even sad or depressed! i just feel like i don't know how to react to things anymore...it feels like things have no flow, if that makes any sense, like it's just one thing to another...like your head literally feels cluttered up with bits and pieces of things and even if you're focusing on something- your mind is still going a million miles and hour...it's not like people who are sad who can do something to take your mind off it, as i said before, it just constantly feels stuck

it's hard to explain like i said, but it feels like i'll never be myself, cause i literally feel like i went to another person, it all feels like a bad trip...but people on the outside don't understand, it's not cause i'm sad! i'm pretty optimistic actually, things just feel so OFF...maybe somebody can relate, could be a combo of things too since my bodies been through so much in this time and it all just seems like it could collapse

anyways, just wanting to see if anybody can relate- or understand some of the things i'm saying? it's just the strangest things, even my dreams are extremely weird, doing basic things doesn't feel right AT all, it just feels like a lot....and it effects you a lot too, because before i started getting sick, somebody could have got killed in front of me and i'd still be happy :lol: it was all just relaxed, flowing, everything made me happy...so it's a big switch feeling so sensitive to the randomest things, without actually being sad/mad...it's like a third person feeling to sum it all up, i don't even feel like i'm in my body...i probably sound crazy :lol: :lol:

have a nice day everyone! and i apologize for making anybody read that wall of babbling ;)

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Uh, yeah, I had all that! It's gotten better with my Lyme treatment .... I had gluten intolerance due to Lyme, so I can't tell you if someone with celiac is prone to that, but I sure had it BAD!! Exactly as you describe.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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i don't think i have lyme, but i'm sure celiac isn't the only thing i have...still waiting on a SMART doctor :lol:

but ah, it's so strange/complex isn't it! people look at you like your crazy sometimes when you try to explain, i know prior to this i would have too

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still waiting on a SMART doctor :lol:

Good luck with that! My Lyme doc is GREAT, but all other doctors I went to were clueless.

You might want to check out this thread .... http://www.glutenfreeforum.com/index.php?showtopic=36163

Have you been tested for celiac disease yet?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Oh yeah. It's kinda like being on autopilot while having a chronic series of brain cramps. Suddenly there's a moment when things kind of sink in and its disconcerting, to say the least. A sudden awareness of "being". And then it goes back to the autopilot disassociative perceptions for awhile.

Regarding words.... that happens to me all the time. I can come up with what the object looks like, what it does, but not what it "is". For example, I'll ask hubby to grab a "clothes hangy-uppy thing" when the word I really want to say is "hanger". Can I think of it at the time? No.

At least he and I have both learned to get a few laughs out of it.

Dreams have been strange too. Ever have serial dreaming? That one weirds me out. Dreams that pick up when and/or where past dreams have left off. Bizarre. :huh:

Anyway, you're not the only one. Not sure there's comfort in that knowledge or not.


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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supposedly

i got tested for lyme but a lot of my symptoms sound like it, i wonder if the test he did wasn't a good one or something...i have no clue

Unless they sent it away to IGeneX in CA or another specialty lab, it wasn't a good one. :( Doctors don't want to diagnose Lyme Disease .... read through the thread .... there's a political battle surrounding it in the medical field.

The test most doctors use is 50% accurate ....

The other problem with Lyme testing is that there are a of false negatives, just like celiac.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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i see plenty of people say the basic neuro symptoms, but i have had some crazy ones since i've been sick

i've felt really strange, for example my thoughts, reactions, responses, it all seems really different...i know i have brain fog, but sometimes i have the a word right there but just can't get it out, i feel stuck, if that makes sense...it just feels like everything is floating around me, like i'm in a different world, i can't even remember how things normally feel and can't grasp things at all, whether i'm reading something, watching something, somebodys talking....it all floats by me, i can talk for HOURS and not remember one thing, or think of something to say and a second later forget it all....i try watching something, and the screen feels like it's bugged out....it's like i hear people say they had neuro and vision problems, but what about the really strange things, where it's almost impossible to even explain? somebody could give me a billion dollars right now and it wouldn't change how i feel, and i'm not even sad or depressed! i just feel like i don't know how to react to things anymore...it feels like things have no flow, if that makes any sense, like it's just one thing to another...like your head literally feels cluttered up with bits and pieces of things and even if you're focusing on something- your mind is still going a million miles and hour...it's not like people who are sad who can do something to take your mind off it, as i said before, it just constantly feels stuck

it's hard to explain like i said, but it feels like i'll never be myself, cause i literally feel like i went to another person, it all feels like a bad trip...but people on the outside don't understand, it's not cause i'm sad! i'm pretty optimistic actually, things just feel so OFF...maybe somebody can relate, could be a combo of things too since my bodies been through so much in this time and it all just seems like it could collapse

anyways, just wanting to see if anybody can relate- or understand some of the things i'm saying? it's just the strangest things, even my dreams are extremely weird, doing basic things doesn't feel right AT all, it just feels like a lot....and it effects you a lot too, because before i started getting sick, somebody could have got killed in front of me and i'd still be happy :lol: it was all just relaxed, flowing, everything made me happy...so it's a big switch feeling so sensitive to the randomest things, without actually being sad/mad...it's like a third person feeling to sum it all up, i don't even feel like i'm in my body...i probably sound crazy :lol: :lol:

have a nice day everyone! and i apologize for making anybody read that wall of babbling ;)

Gluten caused me neurological issues, too. I used to be constantly told by everybody (family and co-workers): listen, focus, concentrate,the answer is right in front of you, pay attention, etc,,,. I always made mistakes doing the simplest of things both at work and home. Everybody, including myself, could depend on me making mistakes at work and home-that was horrible. Nothing ever made sense to me. My short term memory used to be nil. I often felt like my brain wasn't really in charge of my body, more like it was along for a free ride (impossible to explain). I could detect (and totally fixate) the slightest distractions, like a car idling a block away or an insect pounding on a window trying to escape the house. I really started worrying when I began to lose long term memories (thats what defines us). Most people don't have a clue and their comments turn into a personal attack, which exacerbates our problems. Going gluten and lactose free has resolved a lot of these problems. If I get exposed to gluten or milk, many of these bad things return.

I'm a newbie here, but it sounds like you are still being exposed to gluten or some other allergen (you should ask your Dr sooner than later).

You are not alone going through this! The reason you are using this website is the same reason I love it. It is a place where we can be understood and seek help, as most people in our daily lives cannot begin to understand our problems.

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Unless they sent it away to IGeneX in CA or another specialty lab, it wasn't a good one. :( Doctors don't want to diagnose Lyme Disease .... read through the thread .... there's a political battle surrounding it in the medical field.

The test most doctors use is 50% accurate ....

The other problem with Lyme testing is that there are a of false negatives, just like celiac.

so you contact that company, they send you it, and you see a lyme specalist? hopefully there's one here...but nobody else can diagnose that test? i mean it HAS to be a LYME SPECALIST, right? hopefully there's one around here...what's the deal with double negatives though? =\

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also

http://www.health.ri.gov/disease/communica...hclinic-ped.php

would that be a possible specialist? i'd be nice since it's near by

It doesn't sound like it .... they specifically say 'early Lyme Disease'.

You might want to check out Lame Advertisement under seeking doctors to find one near you. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I called it 'living in 3rd person'.

Sometimes it was as if some sort of momentum was responsible for every action or activity. It wasn't me.

It starts to come back if I have much milk.

So I haven't had any cow's milk in quite a while.

Maybe it's as simple as another weird food intolerance, and that simple to fix.

If you don't already keep a food/symptom diary, you might want to try it. ;)


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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On the autism websites they often they cite the work of Karl Ludwig rechelt, who did a lot of work on opioids and gluten/casein. these are protein sequences that have opioid activity is ome people ,like autists. You can google reichelt or Kalle Reichelt or Karl Ludwig reichelt. There is even a test for those opioids. Maybe that is the problem in some people not tolerating gluten and milk.

http://www.gluten-free.org/ Don Wiss has several pages on it.

http://gluten-free.org/reichelt.html

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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