dlp252

GERRRRR i am so frustrated so i feel like total crap again. Worse since i ate dinner and there was no gluten in it i am positive. I made soup. tinkyada, potatoes, celery, onion, carrots, turkey, and homemade turkey stock. This is driving me nuts!!!

I think someone else mentioned easily digestable foods...a few months ago I tried the specific carbohydrate diet. I didn't notice a HUGE change, but my digestive system did seem to calm down a bit. They have you eat very easily digestible foods...it's a drag in some respects though cuz you can't have many processed foods at all, even things like ketchup etc. and no grains.

Here is a link to the "creator" of the diet: Open Original Shared Link and here is a link that lists some of the "Legal" foods Open Original Shared Link

I guess I could have taken it to the dentist office to get rid of it -- then it no longer would be poison, it would be a safe metal!!

They probably would have recycled it and used it in someone else's amalgams, lol.

But at the second lab I had to fill 10 vials!!!!!!

Sheesh, I nearly passed out after they took only 1 or 2 vials. I think I might not recover if they took 10! Even with the 1 or 2 vials I can feel the blood draining from my body...head down... I may have nightmares over this one, lol.

Speaking of mercury ... I take my temp. for NFP (natural family planning). This morning I was groggy and took it, then set the thermometer on my nightstand, but missed! It fell on the floor -- little balls of mercury EVERYWHERE! Rats. I have wood floors and it got in the cracks (it's a finished attic, so they're rough cut floor boards -- very old house). I had to vacuum it up, probably not the best method.

YIKES!!!! At least you didn't play with it! Every website I've visited lately said to educate children not to play with shiney silver metallic liquids, lol. Seriously though... I can't remember if any of those websites mentioned the CORRECT way to dispose of broken mercury thermometers.

More thoughts for Linds (that's what we do here Linds, lol, throw out thoughts while we have them ) ...

I saw some minor improvements during the first few weeks I went gluten/casein free, but really didn't notice any drastic changes. The biggest (and fairly major in some respects) benefit of going glute/casein free was probably the fact that I haven't had a "sinus infection" in a year (when I cut out gluten/casein)...I do think that was probably more to do with the casein than the gluten.

I was tested by Enterolabs and got both the gene test and the complete panel. I do have a celiac gene and a gluten sensitive gene, and my stool test showed I had an intolerance to gluten and casein, but not to yeast or eggs. I also did not have a positive malabsorbtion score.

One of the reasons why we all found each other on this thread is because none of us really saw the major changes we should have from just cutting gluten. So, for months now, we've just been exploring different things it could be. I'm currently being tested by some new doctors, and am waiting for the results of my second stool test (had one last year by a conventional doctor which showed nothing).

After this I'm planning on pursuing the Lyme thing, even though I live in California. I also have a mercury problem and am in the process of getting my amalgams replaced. I figure it can't hurt (okay, dental work always hurts, but you know what I mean, lol) and it might help.

Hi linds, welcome! Gee, the first thing that I thought was gallbladder, but you've seen GI doctors and seems to me like that would have been the first thing they thought of. Have you had any scopes done...colonoscopy or endoscope?

Retail therapy, my favorite kind.

Hi Rachel,

Ray changed the heater filter and closed the vent to your room. Hopefully it is safe for you now.

Good idea. Go to the mail box.

Love,

Mom

Hi Rachel's mom!!!! Thank you for taking such good care of her!

Yea That's why I can't find out if my doc is on the list. I checked for my zip code, which didn't include NY. Does someone have an actual list I can look at?

Yep, I'd love the list that's getting emailed and pm'd around, lol. I was able to find two doctors on that website, but wouldn't hurt to know if they're accepted by the lymies, lol.

Before I forget, here is the link of the website where you can search for LLMDs:

Open Original Shared Link

I had to register and you get one search for a 30 day period...

Rachel - I went back (scarey) because I thought I remembered you saying it happened at both your mom's house and at your house (the heater thing), but couldn't find it, lol. If it were at one place or the other, I might think it was something with the heater, but if it's happening at both places, I tend to think it's the junk kicked up by the heaters. Does the same thing happen when you use your car heater for the first time?

Carla - my "sinus infections" seemed to stop after I cut out gluten/casein. It has been almost a year without that feeling...then around the end of September/beginning of October I was eating a lot of "regular" chocolate, and I started to get the "sinus infection" feeling again...pretty sure it's the casein that was overloading my system all that time and probably was starting to overload it again a few weeks ago.

Donna, we went on a cruise in January. The problem with the shore excursions is, that you officially aren't allowed to take any food off the ship, or bring any back onto the ship, either. We overcame that by signing up for an excursion that didn't leave until 1:00 PM, and ate a very late breakfast at 11:00 AM (they made me stir fry three times a day).

I did take some snacks out in my backpack. Nobody checked our bags as we left the ship, and I took the chance. You may have to do the same thing to survive. It's not likely they'll have the time to check everybody's bags, as the buses, taxis etc. are waiting for the people doing the excursions, and there are too many people leaving the ship. It would take hours to check every bag.

Thanks for the tip Ursula! I've taken some small things out before without problem, but I'm not sure I can take out enough for the 8 hour trip, lol.

Donna, I still cant believe I went through that whole "eye ordeal"....I kept going to the opthamologist and the other "seeing" eye doctors.... (cant remember what they're called). They could never find anything wrong except extremeley dry eyes. I was told I would have to live like that....and use eye drops all day long. I did not believe it...I kept going back to the opthamologist and then she told me that "I just needed to "accept" that I have dry eyes....lots of people have it."

I'm sorry but I *know* people who have dry eyes and they werent dealing with the same things....having excruciating pain, having to wear sunglasses at night, not being able to drive or watch a movie. It wasnt affecting their WHOLE life.....HELLO....how is this *just* dry eyes??

Sometimes my vision was perfect and other times not as good....it could change drastically overnight. Sometimes my eyes would just get extremely blurry. I got glasses...TWICE. I never wore them though and I didnt really need them...I didnt want to mess up my eyes by wearing them....plus they made things blurrier and gave me a headache.

The way they tested me to see exactly how dry my eyes were was to stick these little sheets of paper directly into my eyes...the papers would literally hang out of my eyes. Then I would have to sit like that for awhile. The papers would change colors depending on the moisture. It sucked and it was MOST unpleasant having those papers in my eyes.

My ex (before we were exes) could not handle watching me having to sit there with these papers in my eyes....was almost in tears about it. No wonder we are exes....that was just the BEGINNING...that was NOTHING. I think some people just cant handle illness very well....they dont know how to deal with it.

Donna,

I'm pretty sure three years of antibiotics could have held the Lyme back.....at the same time though.....3 years of antiobics is a LONG time. Being on antibiotics for that long can be really damaging to your gut. If you werent taking probiotics this could have caused leaky gut, candida, etc. I dont know if you noticed a worsening of symptoms related to your gut after all the antibiotics but I know that longterm antibiotics w/out probiotics can cause some damage. Antibiotics also supresss the immune system.

I'm wondering if its something like that for you....with the antibiotics causing a candida overgrowth and then because of the toxic buildup....mercury also became an issue. These symptoms can all occur without Lyme being involved. The BioSET lady said there are people having all of my symptoms but NOT having Lyme...but they do have candida, heavy metals, maybe virus or parasite, etc.

I guess you will find out more when you see her. I'm betting on candida showing up in her test because of all the antibiotics you were on.

But...you must have been sick before that?? Thats why you were on the antibiotics?? Something must have been happening to begin with...maybe Lyme? Maybe Celiac?

OK...now I'm really anxious to hear what the BioSet lady comes up with.

See, that's why my eye doctor says too...I just have really dry eyes (though thankfully I didn't have to have paper stuck to my eyeballs, lol), and he wants me to use drops every 3 hours! The drops do help keep me from having that goopy thing happening, but I still get the eye pain once in a while.

My eyes change too...they are blurry when I read, but sometimes they are just blurry.

Fortunately I took lots of probiotics while taking the antibiotics...my ENT was almost certain I had a candida issue, so I used those for the whole three years I was on antibiotics.

And yes, the reason I had to take so many is because I would get "sinus infections" which I am now doubting were really that. The first one was horrible, I was down on the couch for a full week with fever, chills, body aches, sore throat...seemed like it might be the flu, but it wasn't...wasn't a cold either...that was the first time he gave me the antibiotics (but before that even I had recurring bouts of bronchitis--at least these were spaced out a bit). But with that first time he gave me antibiotics and prednisone...after that (in May 2001 or so), I kept getting them over and over again, but they weren't as intense...I'd get extremely tired to the bone and very dizzy...I'd get more antibiotics...a new course about every six weeks for three years. This all happened within a few months of my hysterectomy surgery!

Donna, apparantly there is lots of Lyme here in CA.

There was a thread on the Lyme board asking if anyone in CA had Lyme and where they got it. I was pretty shocked but ALOT of people who responded were in the Bay Area.

This is the guy who appears in magazines, newspapers, he will be in the Lyme documentary "Under Our Skin" and he was diagnosed first by my favorite BioSET lady and then Igenix. I believe he still goes to Bioset for treatments. I am gonna try to contact him at some point.

I worked in Los Altos for about 8 years. There may not be deer where she lives but in Los Altos Hills there are deer, mountain lions and everything else you would expect to find in the hills. The hills are right there...just a hop, skip and a jump away. The deer ticks could easily get a ride into the neighborhood.

So these are just some of the posts from people in CA...obviously its here in the Bay Area. Other places that seemed to be hot spots were Sonoma County, San Diego and a place called Ojai???

Okay, I used to go hiking with my friend up in Big Sur, my sister lives up near Yosemite and I've done my share of walking through the brush there, and I used to taking a painting class that went out into the grassy hills around Los Altos! That's all besides the week long hiking trip to Vermont. I've camped up north of San Francisco somewhere too. Sheesh.

I haven't mentioned the "L" word to too many of my friends or family yet lest they think I am insane, lol, but I mentioned to a friend at church today in an off-handed way, and she not only didn't poo-poo me, but she knew a little bit about it and actually thinks I should get tested.

x.

He sounds very good! Promising!

Dietary changes made a difference about that time too but I was definitely on a downhill slide now that I really look at it. I gained weight too and no matter what I did I couldn't lose it.

That's where I'm at now...10 extra pounds that just won't budge.

OMG--I am just so proud to have been the 10,000th post! I want to thank my mom, dad, my family here at home, my OMG thread friends, and the members of the academy! This is truly a great honor!

The more I read about Lyme, the more it sounds like what I have, but it just seems so unlikely... I've had the eye pain too...told my eye doctor about it, but he didn't have any suggestions about it...we did every kind of eye test to find out if it could be something "physical"...fortunately I don't get them often, but when I do it's excruiating! I'm wondering, and I know I've mentioned this before, whether those three years of antibiotics made a difference in the level of severity of my symptoms if I DO have Lyme...I was on nearly constant antibiotics for 3 years... Wondering how that would affect any testing...I've not taken any now in almost a year, so that part is covered. First things first though...got to get my butt into the BioSET lady to see what comes up.

To all the newbies...while not all of my physical problems have cleared up (I have some other issues besides gluten/casein intolerance), the food thing has gotten much better. The shopping and food selection things will mostly become second nature, but I still have a day here or there where I just want to eat what everyone else is eating. For the most part I LOVE the food I eat, but when I go to someone's house for dinner, or to a restaurant, I would really like to not have to worry about what to eat. And, I'm leaving on vacation on Friday, and it's a cruise...for the most part I'll be fine on the ship, but we have a shore excursion scheduled that is 8 hours long in a foreign country...that has me worried, lol.

So yes, it really does get better, but it can still suck sometimes, lol.

Just passing through and wanted to ask if there was a link, or source, of where to find LLMDs in every state? I did a quick search but didn't come up with anything specific.

I have one bookmarked at work, but not here unfortunately...it was from a link that Rinne posted a while back, so if no one has posted it Monday morning, I can from work.

Does anyone else get reflective this time of year? I don't know what it is but every year at this time I deeply reflect on the state of my life, where I am, where I am not, where I want to be. I get super emotional too. There was a switch though for me, I just woke up today with a fire in my belly I just want to take my life back!!!!!!!!! I am so tired of being ill. Just thought I'd share.

You go girl! I think we are all fighters here but I think we sometimes just forget to remember that. I do get reflective around this time...what reflected wasn't so pleasant this time, lol.

Hi Debbie, thanks for the chuckles, lol!

I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it.

If that's what I've got, it's certainly true.

Yay for Laura and eating more foods and gaining a bit of weight!

Hum, I am more emotional in some ways, but more emotionally dead in others. I tend to get upset a lot over little things more lately...not sad crying upset, I mean MAD. (Although I did cry at work when a co-worker teased me about something.) I spent the last two months in anger h*ll, lol. I do cry at commercials and stuff when I'm alone. I'll cry over a choir song I'm learning, or a thought that will come into my head. I DO think it's probably a good thing I live alone though because I could totally see it being really hard for that person, and I probably would cry more than I do! Sometimes I feel like I don't even have the energy to cry anymore. One thing is for sure though, I am not a good sick person...I am no joy to be around when I'm sick! And, I do think I tend to take things more personally when I'm not well...my reaction just varies from sad to anger and anywhere in between when that happens.

Julie-thanks for asking, I am sleeping better. Since I've been taking that second supplement (the valerian root), I've been waking up several times a night, but going back to sleep eventually each time.

Yeah....she totally could have scheduled all of my appointments when I paid for them....she just didnt WANT to. Then tonight she told my mom on the phone that I should have just scheduled all of my appointments ahead of time....to AVOID this. I'm trying not to get overly upset.....trying to take miamia's example and put it all behind me...I think I'll have to sleep it off. The recptionist is young....she NEVER seems to wanna be bothered with anything. I should have pushed the issue about scheduling the appts. but instead I took her word for it that it wouldnt be a problem. Thats the LAST time I do that.

As far as the parking situation....I asked her if it was gonna be like this from here on out. She said no...its just because today is "Black Friday". I'm thinking parking is still gonna be difficult....maybe not like today but definately its gonna be more crowded then ususal. I'll probably have to deal with the same thing trying to make my appt. tomorrow.

I didnt expect that mall to be crowded like that....I would expect it to be heinous at Valley Fair....but not there. Guess I was wrong.

Oh well...when you get back from the cruise I'll give you an update on the parking situation.

That's a good idea...getting upset doesn't really do anything except make us feel worse! I hardly ever go to malls anymore aroud Thanksgiving/Christmas unless our group is singing at one, lol...just don't know what it's like. Two years ago, we sang at Oakridge mall late in the afternoon...I thought parking would thin out by then, but it was HEINOUS!!! We had to park across the street in an insurance company parking lot! Thanks for offering to be my parking lot correspondent!

Thanks for the update on Andrea by the way.

RACHEL!!!!! Absolute HEINIOSITY!!!! I'm so sorry. I can't believe that. Okay, that about cements my decision to wait until AFTER I come back from vacation and maybe even after Christmas, lol. I don't want to hassle with holiday traffic/parking. I can't believe she didn't schedule your appointments. The HN receptionist has my PT/chiro appointments scheduled through the end of December, so it's possible to do. Grrr!

Okay, I've been gluten free since February. I've decided that this is just the worst thing in the world. I just need to vent. I'm sick of the whole thing. I'm sick of trying to be careful. I'm tired of pain. I just want to be normal. To have a good pizza, to have eggrolls, decent soy sauce, etc, etc. I made a delicious chinese meal for my son's friends, you know, fried rice, egg rolls, crab wontons, the whole works. I forgot to take out fried rice without kikomans soy sauce for me. I'm tired of separating stuff out. I'm tired of forgetting to separate things out. I make the best eggrolls and I can't even eat them. Thanks for letting me vent.

Vent all you like! It really sucks sometimes doesn't it! Hugs to you!

I'm going to have to get me some of that tea, lol. That together with my valerian root and melatonin ought to really help me sleep, lol. Yah, darned cute beagle, lol.

So glad to hear from you again Evie!!!!! We really miss you around here, but please take your time....get as much rest as you can.

Donna, How was your resting day? It sounded very nice, actually! How cute do your cousin's beagles sound?

It was good. I felt much better than normal so I was inspired to bring down some Christmas decorations. I wasn't going to put up anything this year...last year didn't feel like putting up much either, but I was suddenly inspired this morning. Don't have much up but it feels better, lol. I restrung 4 bracelets and relaxed the rest of the day.

Somewhere during the afternoon, I developed an earache sometimes when I swallow. I stayed outside for quite a long time yesterday trying to get the newest beagle to do her business outside, lol. I will be totally pissed off if I'm getting an ear infection, harumph! Last year, in October, I had to cancel a trip to Australia and Tahiti because of strep throat/ear infection/sinus infection. Grrr.

Those darned beagles are tooo very cute, lol.

I'll be glad to get an update from Andrea.

Ditto, big time!

Ladies, I am a Grandmother, a baby girl has appeared.

Hoooraaaayyyy!!! Congratulations! And, what is her name...was that mentioned before, lol.

I must say, that is why I was supposed to go. I needed to hear that. I felt like I was being wrapped in a big hug.

That's one of my favorites!

Sorry, I think I might have bumped into my mojo somehwere last night (who'd have thought such a thing would linger at the in-laws? )