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Rachel--24

Omg...i Might Be On To Something

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Yah, but if you have lyme you have an even better reason to be messed up. I'm sure the mercury isn't helping. My doctor blames my mercury for my few intolerances. I don't have any other issues that I know of.

Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

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rinne, are you trying to make me cry? This was so beautiful what you wrote it and went straight to the heart and made me tear up, not only because I am so sorry you are going through this day in and day out, but that I can completely relate to being in this place, feeling this way. You said it very well, as always.

Rinne...ditto to what Julie said. I also can relate to everything you wrote....its hard but we just get through the days because we know theres a light at the end of the tunnel.

I'm really frusterated and sad about your experience with Hoffman. Its such a disappointment....I've been there as well...putting my faith in someone and then getting let down. :(

I hope it doesnt turn out this way with my new Dr.....I still dont know what might happen....its a scary time for me... all this waiting and not really knowing whats ahead for me.

I believe what Julie wrote. When one door closes another one opens. I hope you are feeling a little better now...things like this can really throw us off. You're still a Laughing Lyme Lady and you are still so in tuned with your body. You dont need him because you've obviously already surpassed him in your knowledge of your own illness.

For some reason I had thought that he was an LLMD...maybe that will be your next step?? I think both of us need someone who is really knowledgeable....anyone who isnt qualified will just waste our time. <_<

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Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

Judging by the article Rinne posted, it sounds as if mercury and Lyme often go hand in hand ... and that would certainly tire your adrenals!!

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My mailbox is down the street, so I only pick it up every 4-5 days, and that's only if there is an open easy parking space in front of it. The box has been so jammed that the lock fell off twice because the mechanism couldn't move, so when I put my key and and turned, it came unscrewed! I have 3 months worth of bank statements to balance! Rachel, I so understand about that and am so sorry you have that going on too.

Carla - our choir practice starts at 7:00 also, and I haven't been able to go in a couple of months now. I did get a nice email from the choir director yesterday who said I can come back anytime I feel up to it. And, he's being very patient and understanding about me just showing up on Sunday to sing...I basically learn the song during the early Sunday rehearsal.

Rachel - I think there are at least two LLMDs in our area...I pulled their names off one of the websites Rinne posted...the link is at work though. I thought originally I might ask to see your doctor, but maybe I should see one of the LLMDs instead, lol.

Oh, and I actually called the BioSET office today, but no one answered...then I sent them an email. Sometimes it takes me a while to get around to something. :ph34r:

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Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

Donna...is it Dr. Rick you're talking about?? If it is...he's probably thinking "Oh God...not another one of *those* girls." :lol::lol:

I think I annoyed him because I was always diagnosing myself. He never said it *couldn't* be these things...just that there were other things that were more likely. Same thing with Lyme....he thought he would find a parasite or something because he usually does...but not in *my* case. They were "stupified" by me....couldnt figure it out....I am just too darned complicated. :rolleyes: Well....HA...I was RIGHT all along. :P

Lyme Clan B)

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Judging by the article Rinne posted, it sounds as if mercury and Lyme often go hand in hand ... and that would certainly tire your adrenals!!

Yep, that's what I'm thinking too. I can't imagine what else it is...but he's really certain I have bugs, lol. He said he'd very VERY surprised if I didn't have them...I felt like saying "get ready to be surprised". I took these tests last year and they showed nothing, but he thinks the difference in lab processing will make a difference, lol. Might, could, maybe...we'll see.

Donna...is it Dr. Rick you're talking about?? If it is...he's probably thinking "Oh God...not another one of *those* girls." :lol::lol:

I think I annoyed him because I was always diagnosing myself. He never said it *couldn't* be these things...just that there were other things that were more likely. Same thing with Lyme....he thought he would find a parasite or something because he usually does...but not in *my* case. They were "stupified" by me....couldnt figure it out....I am just too darned complicated. :rolleyes: Well....HA...I was RIGHT all along. :P

Lyme Clan B)

:lol: Yep, doctor Rick...ha, see my post above...that's exactly what he thinks...it's a parasite! :lol::lol: I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

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Rachel - I think there are at least two LLMDs in our area...I pulled their names off one of the websites Rinne posted...the link is at work though. I thought originally I might ask to see your doctor, but maybe I should see one of the LLMDs instead, lol.

Oh, and I actually called the BioSET office today, but no one answered...then I sent them an email. Sometimes it takes me a while to get around to something. :ph34r:

Cool...Donna. Hold onto that info!! I might be needing it.. ;) I'm glad to hear there are some LLMD's here...I figured there must be....but had no idea how to *find* them. :unsure:

I would be so curious to see what the Bioset testing shows is wrong with you. I think you would like the lady...shes really bright....as in intelligent. Thats what I like....healthcare people who know what the heck they're talking about. B)

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Donna, I have three months, too. I just show up on Sunday, too, but we don't have a practice before Mass ... I totally wing it, standing in front of a mike, standing out with my flute. If it's bad, it's bad. :P

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I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

:lol::lol:

Did they look at you like this?? :rolleyes:

OMG...your post made me laugh....I needed that! :D

I take it back....they *did* find something in my stool test. It wasnt a parasite though...it was that C-Diff. infection....BUT the C-Diff may have been overgrown and maybe creating toxins...but it wasnt what was making me sick. C-Diff causes serious "D"....and I did NOT have any "D". I kept pointing that out to Dr. Rick...."How could I have C-Diff...I read about it on the internet and I dont have any of those symptoms?" :huh: Yup...I think he probably dreaded seeing me...I was the "internet girl". :lol::lol:

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Rinne-

I am so sorry to hear about your experience today. I feel your frustration- in terms of the appointment and in terms of everyday living. Its the worst feeling when you can feel your old self almost being pushed out to make room for the "sick you" because the sick you is so powerful at times- but you just have to fight it. ( I hope this makes sense)

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Ahhh.. so its alot.

The other test where you have to take antibiotics first we are waiting on becasue I am on the diflucan right now and we are gonna have these done first. My doctor is very cool though- he really does respect me as a patient he said if we do go ahead with that test he would rather give me the antibiotics through a shot or something else becasue my system is so sensitive and taking them orally will just be so hard on my stomach.

Ok so thats most of what I can remember right now.

Miamia

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I'm assuming Dr. Rick does believe that mercury can cause these horrid symptoms.....he *did* send me to the new Dr. afterall. Or maybe he was just trying to get rid of me. :lol:

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Donna, I have three months, too. I just show up on Sunday, too, but we don't have a practice before Mass ... I totally wing it, standing in front of a mike, standing out with my flute. If it's bad, it's bad. :P

HA, at least you read music, lol. :lol: I don't. :ph34r: Our service starts at 9:00 but we have to be there at 8:00 to rehearse. :blink:

:lol::lol:

Did they look at you like this?? :rolleyes:

OMG...your post made me laugh....I needed that! :D

I take it back....they *did* find something in my stool test. It wasnt a parasite though...it was that C-Diff. infection....BUT the C-Diff may have been overgrown and maybe creating toxins...but it wasnt what was making me sick. C-Diff causes serious "D"....and I did NOT have any "D". I kept pointing that out to Dr. Rick...."How could I have C-Diff...I read about it on the internet and I dont have any of those symptoms?" :huh: Yup...I think he probably dreaded seeing me...I was the "internet girl". :lol::lol:

Yep, that's exactly how he looked at me, lol...I haven't brought up the internet thing too much, but I think he "know", lol. :lol: I DO have the D, but they looked for C.Diff in February AND H.Pylori. Maybe it's kind of like the adrenal thing...the labs HN uses probably look at more things. I'm really interested to see what it shows. :P

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Ahhh.. so its alot.

The other test where you have to take antibiotics first we are waiting on becasue I am on the diflucan right now and we are gonna have these done first. My doctor is very cool though- he really does respect me as a patient he said if we do go ahead with that test he would rather give me the antibiotics through a shot or something else becasue my system is so sensitive and taking them orally will just be so hard on my stomach.

Ok so thats most of what I can remember right now.

Miamia

Oh Mia, YAY!!!! That sounds really encouraging to me!!! Yay yay yay!

I'm assuming Dr. Rick does believe that mercury can cause these horrid symptoms.....he *did* send me to the new Dr. afterall. Or maybe he was just trying to get rid of me. :lol:

Yep, I think we just haven't satisified his parasite thing yet. :lol: Once the parasite thing is done with, I'm sure he'll start considering the mercury. :lol::lol: THe PT guys are convinced I'm not doing my exercises and stretches cuz I'm not getting better...I'm doing the stupid things 2-4 times a day! :blink:

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I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test.

Ok...so it took me a minute to get this into my "stupified" brain. :ph34r:

I'm thinking...what does Celiac Disease testing have to do with Lyme?? :unsure:

:lol::lol:

Did you type C.D. and it came out Celiac Disease or am I losing it right now? :huh:

It sounds like your appt. went really well. :)

I'm so happy for you mia...and that your Dr. is pursuing this diagnosis for you. I hope the new tests give more specific answers. I'm keeping my fingers crossed for you. :)

I'm anxiously awaiting your results. Good thing I stopped my nail-biting habit or by now there would be nothing left. :P

I agree about holding off on the antibiotics for now. :)

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Lyme Clan B)

:lol:

:lol: Yep, doctor Rick...ha, see my post above...that's exactly what he thinks...it's a parasite! :lol::lol: I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

:ph34r::lol::lol:

Rinne-

I am so sorry to hear about your experience today. I feel your frustration- in terms of the appointment and in terms of everyday living. Its the worst feeling when you can feel your old self almost being pushed out to make room for the "sick you" because the sick you is so powerful at times- but you just have to fight it. ( I hope this makes sense)

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Thank you Miamia, :) I am glad that your appointment went well and hopefully further testing will clarify this.

Hoffman has treated eight other Lyme patients so no he is not a Lyme Literate doctor although he told me it was an interest of his, that he attended Lyme conferences and hung out with Lyme doctors. I think he is just big time into testing and I am not at this point, also a little distrusting of these tests since he didn't seem to figure the ones he had me do into his thinking once he saw the negative. I don't think he even looked at the bands. :rolleyes:

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Ok...so it took me a minute to get this into my "stupified" brain. :ph34r:

I'm thinking...what does Celiac Disease testing have to do with Lyme?? :unsure:

:lol::lol:

Did you type C.D. and it came out Celiac Disease or am I losing it right now? :huh:

It sounds like your appt. went really well. :)

I'm so happy for you mia...and that your Dr. is pursuing this diagnosis for you. I hope the new tests give more specific answers. I'm keeping my fingers crossed for you. :)

I'm anxiously awaiting your results. Good thing I stopped my nail-biting habit or by now there would be nothing left. :P

I agree about holding off on the antibiotics for now. :)

I put C D and it put in celiac. Tricky little thing!!

I know I ahte that I ahve to wait til monday to get the blood work done becasue tomorrow is thanksgiving. Holidays are so inconvinent!!

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I put C D and it put in celiac. Tricky little thing!!

I know I ahte that I ahve to wait til monday to get the blood work done becasue tomorrow is thanksgiving. Holidays are so inconvinent!!

I think the only one more anxious to hear about your results than us is YOU, lol. They're keeping us all waiting! :P

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It's nice to have those patient people in our lives who are willing to work with us and support us any way they can. He'd see me at band when I was really sick and losing so much weight and just come over and give me a hug. Your "oboe player" is your mom. :)

We'll all get better and be better people for having had this experience, for suffering and not succumbing to the illness, for the extended commitment to get better, for the detachment from the material world, and for the friendships we've made here.

Thanks Carla...you guys all made me feel better about this. :):wub:

My mailbox is accross the stret and its a HUGE chore for me to get the mail. I've been good about it lately...I get it every weekend. Well actually I get it on Monday morning.....when I'm headed back to work and my Mom's. I kind of do a drive-by....just throw it all into a bag and into the trunk it goes.....with the previous weeks mail....and the weeks before that... :ph34r:

When I was on disability I sometimes wouldnt get it for up to 3 weeks!! I would get notes that there was no room left in the box...that they could no longer deliver my mail. I was ok with that.....no mail is fine with me. :P

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Rachel-

I hate the idea of you being home alone on Thanksgiving. I was really down but tonight and really thought about wanting to play hookie from the festivities but I know my family wants me there and I love my family especially mmy neice and nephew sometimes they are the only things in this worldthat make me want to keep going. My family is very laid back- and no one wears any perfume. My mom is very allergic to all things like that. So if you want I'll leave the computer on and you can eat with us!!! I'm cooking all my food anyways so you don't have to feel bad about not being able to eat what everyone else is. And they are all very understanding about my food situation . I swear my 7 year old nephew understands it more then most adults- the other day he was eating pizza and he was like" you can't have this right becasue of the wheat and cheese?" hes amazing.

So we eat early but your invited- via internet

Miamai

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Holidays are so inconvinent!!

Yeah...stupid holidays!!

Everyones buying food ALL day long...thats ALL these people who come into my store are doing. Buying FOOD!! Imagine that... :rolleyes:

How irritating. Ummm lets see.....what will I be eating tomorrow?? Potato or beef or popcorn or apples or ice cream??? Maybe I will have ALL of them. :rolleyes:

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I think the only one more anxious to hear about your results than us is YOU, lol. They're keeping us all waiting! :P

Thanks Donna-

I should let the people at the lab know they have to put a rush on my tests becasue its not just me there keeping in suspense.

Yeah...stupid holidays!!

Everyones buying food ALL day long...thats ALL these people who come into my store are doing. Buying FOOD!! Imagine that... :rolleyes:

How irritating. Ummm lets see.....what will I be eating tomorrow?? Potato or beef or popcorn or apples or ice cream??? Maybe I will have ALL of them. :rolleyes:

Rachel-

I would die I worked in a cafe even after I got sick and giving people all this good food I coulden't eat wasen't the hard part it was that I know they didn;t appreciate how lucky they were to be able to go somewhere and order anything and not have to worry what the exact ingredients were or what had come in contact with it during preperation!!

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Thanks Donna-

I should let the people at the lab know they have to put a rush on my tests becasue its not just me there keeping in suspense.

Yes, please do! :lol:

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When I was on disability I sometimes wouldnt get it for up to 3 weeks!! I would get notes that there was no room left in the box...that they could no longer deliver my mail. I was ok with that.....no mail is fine with me. :P

That made me laugh out loud, thanks Rachel.

And Miamia, for sure you should tell them that, "people want to know". :)

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Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

:lol::lol: They're going to refuse to treat any more "internet" people pretty soon.

I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

:lol::lol:

Totally agree with that one. :)

I would be so curious to see what the Bioset testing shows is wrong with you.

Yep, me too.

:lol::lol:

Did they look at you like this?? :rolleyes:

:lol::lol:

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Sounds good Miamia. Keep us posted, as usual. I'm glad he's willing to do the extra testing.

I think the only one more anxious to hear about your results than us is YOU, lol. They're keeping us all waiting! :P

Don't you know it.

I would get notes that there was no room left in the box...that they could no longer deliver my mail. I was ok with that.....no mail is fine with me. :P

:lol::lol:

Thanks Donna-

I should let the people at the lab know they have to put a rush on my tests becasue its not just me there keeping in suspense.

Yes do. Come on labs hurry it up! :P

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So we eat early but your invited- via internet

Mia,

You are sooo sweet. Thanks for making me smile. :) That was very kind of you....I'll be ok though...I'm a tough cookie. I just know this is going to be my last holiday where I dont feel "festive"....I just feel like things are gonna get better. Tomorrow is only one day...in the future there will many enjoyable holidays that I'll participate in. :)

What a great group of friends I have here. :wub:

What a cool nephew you have.....I agree....kids are amazing. :)

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Ha...I happened to ask the receptionist while I was there for my PT appointment how long I should give the melatonin to work...she said "um, should work right away", lol...then she called one of the dcotors who upon hearing that I've been waking up at 12:30 for 2 weeks and mostly not going back to sleep, said "Um, she needs to see one of us". :lol: So they fit me in with Dr. Rick.

:huh: Donna....I must say, you are a very cheerful insomniac! I can't believe you are functioning on this little sleep.....I have done it and just cried all the time......

Yes, holidays are inconvenient and they DO suck. Harumph! :angry: Here's a first, I just made a giant thing of homemade stuffing.....it is baking in the oven. It's so crazy to me, spending all this money on all this food......the store was PACKED, Rachel, you must have been out of your mind at the heinosity of it all today.

Miamia....good news about your appointment! And so nice to invite Rachel to your TG. :)

Rinne...poetic and eloquent, as ever. I truly FEEL your pain when you write about it.....sorry about that disappointing doctor.

Carla....I don't even KNOW how you can get up there and play the flute in front of all those people without practicing. You must have lots of natural talent. ;)

Well, have to figure out what to do with this turkey breast now, adn then homemade cranberry sauce.

HEINOUS!!!!!!!!!!

:huh:

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