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Omg...i Might Be On To Something

Rachel--24

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AndreaB Contributor
AndreaB
Posted

Ok. I think I'm ready for the update. Not really much to add to what I already told Rachel.

We arrived Thursday late and got settled in our hotel and in bed around 12. Kids were very tired to say the least. Headed over to Dad's on friday morning. He came out the door with a walker and oxygen. He looked like he'd aged 5-10 years since I saw him 6 months ago. He's lost some weight. He said he's 200 pounds, don't know what he was before but I'm thinking 225 or so.

I spent all my time with him and Mitch asked the hotel friday afternoon if we could take the crib back and forth to my Dad's. They ok'd that so it made it much easier for me to get Seth down for his naps. My Dad's house is not a child's house. Breakable everywhere! Mitch handled the older two kids and Seth spent his days with me, aside from Friday afternoon since I took Dad to dialysis.

We spent our time working jigsaw puzzles. That was one of our favorite things to do together when I was a teenager. He took many breaks and did something else for spurts of time. I finally asked him point blank what was going on with his health. He said among the times he was in the hospital the last 2 months (3-4 times) that one of those he thought he was going to die. He assumed the cancer had spread to his kidney but told me that he didn't know. He's been feeling better the last few weeks and had gone off of his pain meds. He's hopeful that the kidney is starting to regain some function and he was told that that is a possibility.

I called him today to tell him we got in safely and he said his back was bothering him yesterday at dialysis and into this morning. He took a pain med today.

He's hopeful that he'll continue improving and be able to visit in the spring. I'm thinking if it's cancer that that is not likely. We still have the oxygen to consider too. I am assuming it's to help get more oxygen to his blood since his kidney is not working but I'm clueless.

We left while he was at dialysis and headed for the airport. The flights back were much more crowded. On the way down we were all seated together. Into Las Vegas three of us were together and my daughter chose to be the one in front of us. She talked the lady to death that was next to her. After 1 1/2 layover we boarded our flight to Portland. 2 together. Mitch and Talitha were in the middle; Micah, Seth and I were at the back. The flight was late leaving as we were waiting for other passengers from another plane and the accompanying luggage. We pulled into Portland at 2:35 this morning. By the time we got home it was around 4:30. Mitch only got an hours sleep on the plane and he was off to work after we got home. We left nice but cooling weather in Arizona and came home to COLD. It was 33 degrees when we landed and by the time we reached home we had a dusting of snow. We don't get much snow here. In for some freezing weather with a chance of precip tonight making for a treacherous road tomorrow. I hate days like this when Mitch has to be out in it. Some places will probably be a skating rink. Portland is notorious for that.

Glad to be home, a little tired and Seth seems to be running a low grade. Hopefully it will pass quickly and is just a part of teething. To top that off I caught Talitha taking a bit of his baby food fruit this morning as she was feeding him.....then continuing to feed him from the same spoon. I was not a happy camper.

If I have to go down again I will consider going by myself (with Seth). The kids were bored and didn't really want to spend much time with Grandpa. Of course, we have no money to make a return trip down there anyway.

Missed all of you terrible and it took about 5 hours to catch up. :blink:

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CarlaB Enthusiast
CarlaB
Posted
Missed all of you terrible and it took about 5 hours to catch up. :blink:

We missed you, too. Five hours!! Wow!

I'm glad you had a nice visit with your dad.

dlp252 Apprentice
dlp252
Posted
I'm anxious for Donna to get tested too and seeing what the results are.

Ha, well I ACTUALLY called the BioSET people today, but they had an answering machine on...I left my name and number and a message that I wanted to set up an initial BioSET appointment. No one called back. :(:P I was going to make the appointment for the week after Christmas...oh well, lol, I tried.

AndreaB Contributor
AndreaB
Posted
Welcome back Andrea!!

We missed you! :wub:

Thanks Rachel.

I bookmarked that map also. :)

dlp252 Apprentice
dlp252
Posted
Missed all of you terrible and it took about 5 hours to catch up. :blink:

And a great job you did at it! I hate to think what it will be like when I get back from my vacation, lol. I may try to log at least once or twice from the ship...we have several sea days where there's not much to do except relax...course getting a computer on sea day will be a challenge, lol.

It sounds like you had a very nice time with your dad. Dads are so funny sometimes...mine would hardly talk about anything...but in the last few years of his life, he started to tell me more about how it felt and stuff. I think sometimes they don't want to be a burden and sometimes it's just machoness, lol. Anyway, I'm praying for time in the spring for you and him!

jerseyangel Proficient
jerseyangel
Posted

Welcome home, Andrea. Glad you all got home safe and sound :)

Judyin Philly Enthusiast
Judyin Philly
Posted

ANDREA WELCOME HOME.

GLAD YOU COULD SPEND SOME TIME WITH YOUR DAD.

AGREE ON GOING BACK ALONE. THAT'S WHAT I'D DO WITH MOM FOR SOME QUALITY 1 ON 1 TIME.

BABY WOULD BE A JOY TO HIM.

I GOT THIS FROM A PREVIOUS POST YOU MADE 2 PAGES BACK..

Someone mentioned that some Chiro's can sign for it. Have you checked that out?

MY CHIRO SAID SHE CAN SIGN OFF ON IT IF I'M IN THEIR INSURANCE PLAN WHICH I AM NOT SO I PAY OUT OF POCKET FOR MY APTS. SO SHE WOULDN'T WRITE A SCRIPT FOR ME.

SO GLAD TO SEE YOUR HOME SAFE AND SOUND.

JUDY

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AndreaB Contributor
AndreaB
Posted
AGREE ON GOING BACK ALONE. THAT'S WHAT I'D DO WITH MOM FOR SOME QUALITY 1 ON 1 TIME.

BABY WOULD BE A JOY TO HIM.

Seth and Grandpa got along well. Seth loved playing with the oxygen tubing.

Green12 Enthusiast
Green12
Posted

Andrea, sounds like you had a nice trip and visit with your dad :)

Donna, omgosh, when do you leave for your cruise? I totally missed when you said :ph34r:

Hmmm, about the chiropractor signing off on the Igenex test. Igenex told my bioscan paractitioner specifically an MD, DO, or psychiatrist ONLY.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Ha, well I ACTUALLY called the BioSET people today, but they had an answering machine on...I left my name and number and a message that I wanted to set up an initial BioSET appointment. No one called back. :(:P I was going to make the appointment for the week after Christmas...oh well, lol, I tried.

Donna, BioSET lady #2 called me today. They want me to put 2 bowls of water in the house....one in the living room and one in my room. Then I'm suppossed to bring the water with me to my appt. on Sat.

She said that BioSET lady #1 wants her to check the water to see whats in my "environment". This should be interesting.... I think my environment is pretty clean....except for the dust in the heater. <_<

Anyways she said that BioSet lady #1 is gonna see me next week and do more testing since I havent improved yet....especially after the last 2 treatments for chemicals. She said that its never happened before.....that BioSet lady #1 has never had a patient who didnt respond to the treatment. :huh:

I'm finding it hard to believe that I'm the only one whos not gotten better. I dont think I'm the worst case shes ever seen. <_<

At least I didnt *think* I was. :unsure:

Anyways I still have faith in the BioSET lady but I'm thinking if I have untreated Lyme, co-infections, high levels of mercury and other heavy metals.....how can I really respond to treatment with all this still going on??

It would seem to me that those are the "reasons" why I'm reactive to everything....and those "reasons" are still *there*....and still making me overly toxic.

What do I know though...I'm just the BioSet "patient". :rolleyes:

Right now its not looking good for "Rachel...the aspiring BioSET lady". :(

Oh well....we'll see what happens next. I have many appt.'s next week. :D

I will have scientificness GALORE!! :lol:

dlp252 Apprentice
dlp252
Posted
Donna, omgosh, when do you leave for your cruise? I totally missed when you said :ph34r:

Hmmm, about the chiropractor signing off on the Igenex test. Igenex told my bioscan paractitioner specifically an MD, DO, or psychiatrist ONLY.

FRIDAY!!! I leave Friday...at 4:30 a.m., lol. Actually my plane leaves at 6:20, but the taxi is picking me up at 4:30 (well, hopefully).

And, the thing with the chiropractor...some are MDs too...I think that's why they would be able to. I've seen two that were also MDs and could prescribe.

AndreaB Contributor
AndreaB
Posted
Oh well....we'll see what happens next. I have many appt.'s next week. :D

I will have scientificness GALORE!! :lol:

See, you go from hardly any appointments to many. I like how that worked out. Bioset #1 must be back from vacation next week. :)

dlp252 Apprentice
dlp252
Posted

Rachel, you aspiring BioSET lady you, lol...the bowl thing sounds, um, weird, lol, but I suppose it makes sense...the water will "catch" whatever is floating around in there. What about at your mom's house too?

I also find it hard to believe you are the only one who hasn't responded...just hang in there kid, they'll most likely have TWO once I get in to see them. :lol: I left work at 1:30 today (an hour early, a bonus leaving early cuz everyone in the office except me got to leave early the day before Thanksgiving), so they may have tried to call after I left.

AndreaB Contributor
AndreaB
Posted
FRIDAY!!! I leave Friday...at 4:30 a.m., lol. Actually my plane leaves at 6:20, but the taxi is picking me up at 4:30 (well, hopefully).

That's coming up so quick!

You'll have such a nice, relaxing time. Just what you need. :D

miamia Rookie
miamia
Posted
Thanks Rachel.

I bookmarked that map also. :)

Welcome back andrea- it was not the same without you. I had to remember all by myself to go get my bloodwork done - no helpfuul reminders!!!Good thing it was early in the day when my brain fog is not that bad!!

Miamia

Green12 Enthusiast
Green12
Posted
Donna, BioSET lady #2 called me today. They want me to put 2 bowls of water in the house....one in the living room and one in my room. Then I'm suppossed to bring the water with me to my appt. on Sat.

She said that BioSET lady #1 wants her to check the water to see whats in my "environment". This should be interesting.... I think my environment is pretty clean....except for the dust in the heater. <_<

This is very interesting Rachel. My bioscan people wanted to do this years ago, but we never got around to it. The water absorbs the "environment" and then they test it with the machine to see what resonates in it. At least that is how it was explained to me.

When can we start calling you the BioSet Lady :lol::lol::lol::lol:

I look forward to the scientificness :D

Donna, how exciting!!! I will make a strong mental note about your departure on Friday, but just in case can you drop a reminder here and there before then?? :lol: You know, brain fog :ph34r: I want to make sure to give you a big send off :D

Welcome back andrea- it was not the same without you. I had to remember all by myself to go get my bloodwork done - no helpfuul reminders!!!Good thing it was early in the day when my brain fog is not that bad!!

Miamia

:lol: Mia

Yeah, Andrea you are in trouble, you have the heinous duty of keeping everything straight for all of us on here. We would be lost without you :blink:

AndreaB Contributor
AndreaB
Posted
Yeah, Andrea you are in trouble, you have the heinous duty of keeping everything straight for all of us on here. We would be lost without you :blink:

I'd better get myself organized. :P The problem is you guys don't always tell me when your appointments are.

rinne Apprentice
rinne
Posted
The problem is you guys don't always tell me when your appointments are.

Yes, because they can't remember their appointments which is why they need you to remind them. :lol::lol::ph34r: You may have to add another responsibility, reminding them to remind you to remind them. :lol:

So nice to have you back Andrea. :)

Rachel, that puzzles me, why would you be the only person she hasn't been able to clear? Do they think there is something in your environment that is stopping that and that the water will tell them? Sorry you probably explained that really well already but I am fading this evening, so sleepy. :blink:

Donna, I hope you have a fabulosa time on your cruise. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, that puzzles me, why would you be the only person she hasn't been able to clear? Do they think there is something in your environment that is stopping that and that the water will tell them? Sorry you probably explained that really well already but I am fading this evening, so sleepy. :blink:

I didnt explain it at all really....cuz I'm not too sure myself. :unsure:

Julie explained it better. Yeah...I guess BioSET lady #2 is gonna test the water when I go see her on Saturday. BioSET lady #1 is gonna do some other testing (I think un-related to the water?) when I see her next week.....I guess to try to find out why I'm not noticing improvement.

I actually didnt think much of it...I figured it was too soon to notice improvement. I just happened to mention it to #2 last Saturday....I was asking when I'm suppossed to feel better??

Remember Julie mentioning that there might be "clouds" while I'm going through the treatments??? Well thats what I was asking about....if I should feel bad before I get better?? The lady said yeah....its common to feel bad after the treatment but then it clears and you should feel better. I told her "Oh....well I dont get to the feeling better part. :unsure:"

So I guess I should have been noticing improvement but I just havent. :(

Apparantly they discussed it and are now gonna try to figure out whats wrong...hence the water thing and other testing.

I think I'm just broken...maybe I cant be fixed. :(

I dont think I could be the *only* one though....I'm sure there have been others who didnt get "cleared" initially.

Maybe this is backwards....and the Lyme and mercury need to be dealt with first. Thats what my Dr. said....he said to *not* continue with the Bioset treatments right now because they wont work if I have Lyme and its not treated yet.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Ha, well I ACTUALLY called the BioSET people today, but they had an answering machine on...I left my name and number and a message that I wanted to set up an initial BioSET appointment. No one called back. :(

Donna....whenever I've called them and got the machine I've just called back later. I hate leaving messages...usually the receptionist girl will answer at some point. I'm not too suprised that she didnt call you back though. Its the same girl who didnt schedule all my appts. when I first asked her to. :lol:

AndreaB Contributor
AndreaB
Posted
Maybe this is backwards....and the Lyme and mercury need to be dealt with first. Thats what my Dr. said....he said to *not* continue with the Bioset treatments right now because they wont work if I have Lyme and its not treated yet.

Another puzzle to figure out. The guy that has seen lady #1. Did he say what order his treatment was?

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yes, because they can't remember their appointments which is why they need you to remind them. :lol::lol::ph34r: You may have to add another responsibility, reminding them to remind you to remind them. :lol:

:lol::lol:

Rinne....ITS TRUE!! :ph34r:

I couldnt tell Andrea my appt. times because I'd forgotten them. :rolleyes:

Now I have everything written down....its hanging on the fridge. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Another puzzle to figure out. The guy that has seen lady #1. Did he say what order his treatment was?

Hmmmm...good question. <_<

I believe he was going to BioSET first though.....because she was the first to tell him he had Lyme. His Dr. had referred him to her for his allergies but in the initial testing she found that he tested positive on the Lyme panel.

I think it took him awhile to confirm what she had told him...through Igenix. I'm pretty sure he was seeing her for all of his intolerances in the meantime. I dont think he had chemical sensitivities though...I think mainly food and supplements was what he was getting treated for. Thats what it sounded like when I read his website. He said he was reactive to nearly all foods and supplements.

He posts on the Lyme message board. Lymetoo said she knows him from that board. I should probably try to contact him and ask about this stuff. On his website he refers to lady #1 as his "miracle worker".....so I'm assuming her treatments have helped him. I think he might still go to her sometimes.

Rachel, you aspiring BioSET lady you, lol...the bowl thing sounds, um, weird, lol, but I suppose it makes sense...the water will "catch" whatever is floating around in there. What about at your mom's house too?

Donna....I'm only doing this at my mom's house. I gotta leave the water out for 3 days before my appt. I already put it out.....it should contain enough of my "environment" by Saturday. :D

AndreaB Contributor
AndreaB
Posted
Donna....I'm only doing this at my mom's house. I gotta leave the water out for 3 days before my appt. I already put it out.....it should contain enough of my "environment" by Saturday. :D

I'll be curious to see what this turns up.

I'm running on low right now...zzzzzzzzzz........Seth is still down for his 2nd nap and it is only about 1 hour until his normal bedtime. I'll be up late with him.....one bad thing about crazy flight times. :(

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
FRIDAY!!! I leave Friday...at 4:30 a.m., lol. Actually my plane leaves at 6:20, but the taxi is picking me up at 4:30 (well, hopefully).

WOOHOO!

Donna, we will miss you but I know you'll be having such a great time. I'm jealous...its probably alot warmer where you're going.

I'm gonna have to go eat my ice cream in the bathtub tonight.....so I can enjoy it without going numb. :P

Hi Evie. :)

I'll be curious to see what this turns up.

Its gonna turn up dust. :lol:

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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