dlp252

I missed the group hugs earlier so, here's mine {{{{HUGS}}}}

Patti - I am glad you feel you can come here!!!

I love everyone on this thread.

Hum, I credit my hysterectomy in 2001 for the "trigger" of the major health problems. Before that I did have increasing numbers of bouts of bronchitis and other things, but not really serious stuff. But it wasn't long after the surgery that I started getting those "sinus infections" every six weeks. The first one was so bad that I was on my couch for an entire week. I had a high fever, aches all over my body, stuffy nose, chest, etc...and yet it wasn't like a flu or cold either. I missed a whole week of work that time...doc put me on augmentin and predisone...about six weeks later got another one, which didn't last as long....more antibiotics and prednisone...and the cycle continued until last year when I cut out casein/gluten.

Yeah....thats how I felt!! Nothing ever showed up...making it look like I was some kind of hypochondriach freak.

I was starting to think it was all some kind of cruel joke.....that I was getting punished for something in a past life or something. How could I feel like this and everything is normal???

They just werent running the *right* tests...so when they run the *right* test....something will show up.

I hope so in my case too, but I'm almost afraid to get my hopes up, lol. I think that's my little way of protecting myself. Some people may think I'm negative sometimes, but I just don't want to be disappointed and if the testing comes up with something then I can rejoice.

Hilarious.

When I was a kid...rollerskating through Gloden Gate Park (SF)...I skated right into a telephone pole.

I cant really blame it on the Lyme though...

OMGosh, a few years ago I went out for a walk after work and was just walking along very briskly when up ahead I saw a fire hydrant. Saw the darned thing for probably 5 minutes before I got close, and sure enough I CRASHED into the stupid thing! I hobbled back to work where my friend (the cruise buddy) looked at my VERY black and blue knee and asked what happened. I told her--it's been a running joke for years now...it was painful but funny at the same time.

donna.....OMG....this is heaven. Is this a gluten-free cruise? if not how are you handling it?

gotta eat......

I agree! Nope, it's not a gluten-free cruise. I've faxed them a letter (as it said to do on their website) and I'll talk to the head waiter when I get there. I'm not too worried about the whole thing...in my two past cruises, they've been very accommodating even when I didn't have a known dietary restriction, so I think I can do it. I AM a little worried about one of our shore excursions though...it's a power boat thing and including travel to/from it's a whole 8 hours long, so I'm just a bit concerned. I'll take fruit and nuts and a nutrition bar that is legal on this elimination diet with me.

I am just feeling so overwhelmed tight now and sleeping terribly- I just want to fell good even for a day and I swear I can't remember the last time that happened. Sorry to be so down.

Miamia

Miamia, so sorry...if you can be down anywhere it's here! We totally understand what that's like--to just want to feel good. I just want to feel "normal" again. I really would be interested to see your results too. I expect that mine will come out negative when I actually get around to testing...I don't know why, maybe it's just been so long that I haven't felt well, and there just never really ever seems to be anything wrong when they test me. At least I had the adrenal tests show something, lol.

Donna,

You can go see the bioset lady first and see if she comes up with lyme at all......be sure to ask when you go see her.

When do you leave for your cruise?

Yep, I'm going to go see the BioSET lady...I just can't decided WHEN to do it...now or wait until after the first of the year. If I saw her now, I couldn't spend much time with her if I needed to clear pathways or anything.

I leave on December 1, but the cruise leaves on Dec. 2...so in exactly 2 weeks I'll be sipping my water from my balcony looking at the waves.

For those of you who've lost parents maybe you know what she means. Unfortunately, I will probably know sooner rather than later.

Yep, unfortunately I think I know...don't know if I could say HOW I changed, but it was definitely a turning point.

People, I have lyme.

I went to my bioscan lady today and I tested for it. I asked if that meant I had lyme, and she said well I'm not allowed to say that...but this would be a very strong indication, that YES, I have lyme.

Anyway, just thought Id share.

Hope everyone is having a great day

Sorry, I'm behind the times, JULIE!!!! Lyme clan.

....was expecting another joke from Donna or something.

HEY!!!!!!!

I know with not being chronically ill that I don't understand everything, but I do try.

Love you guys.

You do a GREAT job!!!!

yes, it is a new word I just made up, feel free to use it, it would please me

I think I've been herxetic since I was born.

I am not "herxetic"

you said herxetic!

Laura, so glad you posted your experience! When I had my surgery in January, they had me in the recovery room FOREVER...I was actually fully awake and all for quite a long time, but my room wasn't ready so they had to keep me in recovery. I hadn't realized how long it was until I saw my mother coming in...they let her and another girl's mother come into the recovery room (which they usually never do) because we were there so long. The look on my mother's face was disturbing...apparently they hadn't told her I was awake and okay so for a couple of hours she thought maybe something happened to me! It was wonderful to see her though, so I know what you are saying about wanting to see them when you come out of it.

Rachel the BioSET lady! Hey, maybe they can do a teaching thing there for you...you might be MY BioSET lady by the time I get around to actually making an appointment, lol.

Donna, Hope you are feeling better with those teeth.

Thank you, yes I am...jaw still hurt a bit yesterday, but so far so good this morning.

I will answer before Rinne does.....

Hmmmm....Lyme Clan

Happy Birthday!

I actually found out through a co-worker, never had heard of it before.

OOOPSSS, I see that you asked newbies, lol...although sometimes I still think of myself as one. Sorry!

Donna.....hope you feel better, miss Lyme Lady.

Thanks, I do!

Donna,

Lime lady.

Yes, when I get old I shall wear lime!

Yup....they gave me those drops too...for adrenals. I had a MAJOR reaction the first time I tried it. It wasnt just my mouth burning...it was my whole body....and the swelling, fluid rention, etc. I took them back to HN and requested my money back since I'd already told them I cant tolerate supplements. What...do all these people think I'm just making this up when I'm telling them NO supplements??

Yes, if I had burning any place else besides the mouth I'd stop taking them too. I think I reacted to the calcium pills they gave me. I took them Tuesday night and all day yesterday I was in the bathroom...I didn't take them last night and I'm fine today. I'll try them once more in a day or two and then I may ask for my money back on those...ain't none of their supplements cheap, lol.

Donna,

YAY about getting more amalgams out.

Ummmm....hopefully you are not still lopsided.

I wonder if its the same Dr. Adams that removed mine?? I'm still baffled by the whole retirement letter I recieved. I mean...I was still eating gluten and everything else at the time but I dont think I was totally delusional.

Is it the guy in the pic on his webpage? An older guy who maybe *looks* like he might be able to retire??

Ok...I gotta ask about my new times when I go tomorrow.

Yeah....she did say to wait a week until I ate a whole egg. I dunno what happened ....I think the egg was too small.

Yep, it's the guy in the picture on the website. He looks like he could retire if he wanted to. Maybe he is only semi-retired because he doesn't work every day...maybe that's what the letter said, or maybe he did retire but decided he liked what he does too much. He wanted to tell a "sick" joke yesterday and both his assistant and I said no.

IN honor of Rinne: I am wearing lime green today and guess what was on my desk when I got here this morning? The LIME green tote bag I ordered, lol. I am truly a laughing lime lady even though I am not a laughing Lyme lady.

Yah, I agree. I mean who can have just one egg as far as I'm concerned.

Who could have HALF an egg...that's just wrong.

Well I took the VitB-12 three times now and I reacted every time. I'm suppossed to take 10 drops 2 times a day. Last night I had an obvious reaction so right now I took 5 drops and still had an obvious reaction. Of course the drops arent just B-12. They have alcohol, stevia extract, flavoring and glycerin.

I dont wannna take it anymore.....it burns my mouth and makes my face swell up.

I dont get reactions from my food anymore because I'm only eating my 5 safe foods.....so I'm not happy when I DO get a reaction from something I'm taking. I dont even know what the point of trying to take supplements is when they all have other stuff in them that I cant tolerate.

Yep, Dr. Vikki has me on three of the liquid supplements and every one of them has alcohol, glycerin and one has vanilla flavoring. All together I have to take 23 drops twice a day!! And, it DOES burn! I put a tiny bit of water in first, then drop the drops which doesn't hurt as bad.

I've been reacting to something since yesterday...I was in the bathroom constantly yesterday and had lots of gas too...it's one of the supplements I'm sure, just don't know which one, but I think it's the calcium because it DOESN'T ONLY HAVE CALCIUM. Grrr, lol! I tried introducing them slowing, but there were a couple I had to start on the same day as others.

Anyway..she started me on B-12 since last week I got treated for all the B-Vitamins and some other stuff. I also ate an egg today.

I am just so excited about these sessions! Great about the chemicals and all, but heck I REALLY excited that you ate an egg. AND got B-12.

I started seeing some small changes within a month or two...try to notice the small things. For instance, I haven't had a sense of smell in years, and shortly after going gluten/casein free I started catching wiffs of things I never would have before. That was kind of fun, lol. There were other things too...very small, but still improvements. I started seeing color in my cheeks again too within those first couple of months. There were other things too, but I just can't think straight right now (had lots of dental work done today, lol).

Here's an old thread I started not long after I went gluten/casein free...lots of people responded with the little improvements they were seeing:

Open Original Shared Link

I also wanted to add that I have had a return of a couple of the symptoms listed there, so I'm betting those are the things that weren't helped by gluten/casein free.

Sorry, had to take a quick break there...I can feel my mouth again so rushed to brush my teeth, lol. Today was my second quadrant of amalgam removal. Upper right side...they had to give me 4 numbing shots and let me tell you the one in the front and roof of my mouth hurt, lol. Also hurt like heck...air/metal/water combo. YIKES, doesn't matter which tooth, that combo sends me through the roof even numbed to high heaven. Strange, my upper lip is hanging down...I thought it was because I was numb, but all that is wearing off now and it's still hanging a bit. Really hope that goes away. Otherwise Donna may not = any more and may look more like

I so totally upset by the treatment of lyme. I don't know if I have it, but I would like to think that when I get tested, I could be treated if I needed to be. It's ridiculous that they put limits on treatment. I just don't understand it. I mean we'd be spending money on drugs, you'd think that would be enough to get them to treat us as long as it took.

When I was done you know what she said??

"Thou shalt be quiet now and thou shalt go pay your bills!"

Okay, the emphathizing friend: Gosh, Rachel, that's awful of her to say. The not so emphathizing friend: Sorry, but that was just funny!

I just got off the phone with my friend who was just diagnosed with Lyme Disease. She had taken her daughter to a pediatric Lyme specialist in Conn. because she wash having major health issues and they had found a tick on her. The doctor said that one tick bite that recently could not have caused the level of disease that she had and started asking my friend questions about her own health, which has been bad since she was in HS. The doctor said he thought the daughter got the Lyme in utero from the mother and that she needed to see a specialist in NY. This specialist diagnosed my friend before the blood test, but used Igenex ... the results aren't back yet, but he's positive she has it. She wasn't home, but when she gets home she's going to give me this guy's number. Looks like I finally get to go to NYC! I have a friend up there, and the doc is about an hour north.

What a funny/strange coincedence. We've been sharing the same health issues for years ...

I think I'm just as excited for you as I was when Rachel found HER Lyme doctor, lol!

Hi and welcome from me too!

What Susan said is right...it can kill people. I've been scared since the day Evie posted that she has it. I've been really worried about her. Its really bad when a small child or an elderly person gets it. I just want her to be ok and I'm praying for some good news to come.

Ditto!!

Open Original Shared Link

"Diagnosis is no longer clinical, only by CDC positive surveillance blood test or EM rash." Just think what that really means.

My friends/coworkers don't always know exactly what I can and can't have (I'll get a "can you have X?" sort of question), but they remember the main premise, and when they bring stuff in (like cakes) they write down the ingredients from the recipe so I can figure out if I could have it. Generally just ... Yay!

And today, when I got in, they had gotten me two boxes of Open Original Shared Link as a birthday present! It's gluten and dairy free! (Those are my two intolerances.)

Someone had noted that it feels better to share our specialty stuff - makes you feel more normal - and these are definitely share-worthy. So, tomorrow, I'm bringing in the good tea I bought today (my birthday present ), and we're going to have tea and biscotti. I'm very excited about this, and feel very normal.

Happy Birthday! Love that they did that for you!

I got a pm from laura yesturday today is her test she said shes actually been feeling ok- Which may not be a good thing for the eos test- but is still good to hear

Miamia

Thanks Miamia! Glad at least she hasn't been totally miserable throughout the challenge period.

I am concerned about Evie too but am hopeful that they just needed to keep her a another day of two. I know much of my concern comes from the tone of Evie's last post, when she said she felt very weak I felt her concern, did anyone else have that feeling? Judy is that what you mean?

Yep, I got that feeling too.