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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

Carla,

I think it makes sense too! We are waiting to hear back from my GP and we are going to get in to see him tomorrow hopefully. That shall be one interesting appointment... :P

Shadow,

I am sorry to hear about your appt. I get the whole being "fired." It does suck! I have no idea why my docotors are moving so slowly...I guess we'll find out soon enough!

Kassanda

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confusedks Enthusiast
confusedks
Posted

We just got a call from my hematologist. My ferritin is at 4. It's low, but I thought it would be lower. He wants to go through with the Iron IV's, I think starting Monday...not sure. (brain fog, can't remember anything!) He is now saying it might be a problem to get a PICC line because they are about $2000, so he is wanting to go ahead without one. He also wants to do 8 treatments this time, instead of 5 which is what we did last time.

I am NOT going to do them without a PICC or central line! :angry: I will put my foot down. I already have a huge bruise on my arm from the blood draw 2 days ago! :angry:

UGH!!!!!!!!!! I am really angry about this whole thing. I need a vacation! :(

Kassandra

AndreaB Contributor
AndreaB
Posted
I really need to get off the sugar...I have just been rachelling chocolate like crazy and when I try to stop then I start rachelling fruit. :(

Chocolate is a difficult one to get off of. I haven't been buying it lately.

Part of the reason I think my mom wants to go to the LLMD with all results in hand is because we don't want to have to go back to see him all the time. As it is, he doesn't do phone consults for patients that are in state...so we won't be able to do phone consults. It will end up being cheaper to do it this way (bringing all results with us) so we don't have to go back to see him in order to go over the results.

If he doesn't do phone consults it is definately better to have all your ducks in a row with the stuff you can, including a completed Igenex report.

I think you should go even if they're negative since it is a clinical diagnosis, but you will not lose any time by waiting a couple weeks.

I agree with this too. :)

My life's been eaten up by school recently. :rolleyes: We also had a Jane Austen-style ball, and saw the GI specialist today. That appointment was horrid. Within 5 min, Mom and the Dr. were in the middle of a major power struggle, and it was just awful. I told Mom way back when she made an appointment that seeing the Dr would be pointless, and it was doubly so since the GI knew nothing about Celiac, ignored everything we said about allergies (apparently allergies don't effect the GI system at all :angry: ), and then Mom had to bring up Lyme! :angry:<_< So I have an endoscopy scheduled with a different Dr. in the practice to get a biopsy for celiac (which is pointless, utterly pointless) and (hopefully) for the strictures in my throat (which she said weren't strictures at all, but spasms from acid... which I'm not really buying for many reasons). And the Dr. was very insistent that I go on meds for acid reflux, as well as extremely rude. I'm not sure who fired who first, us or the dr! <_<

What a miserable appointment! :angry: That's why I don't go to mainline doctors anymore. My current doctor is a MD with holistic leanings and loves "educated" people. He doesn't have one bit of a problem discussing treatments and such.

It's good to see you Birdy! :D

AndreaB Contributor
AndreaB
Posted
UGH!!!!!!!!!! I am really angry about this whole thing. I need a vacation! :(

I think I'd need a vacation if I were you too!

So is the real problem that insurance will probably drag their feet? Why do I suspect so.

The phone consult went well. Dr. E is sending us a mineral taste testing kit for all of us to use. She wasn't too sure about Seth but said we could watch his facial expressions.

I'm to try Micah and Talitha on the chlorella and see how they do. I'm hoping that at least Talitha will be ok with it because that would help us out a lot. Her modifilan only last about 22 days whereas the chlorella would last her 60 and cost about the same. She also wants Mitch and I to stay on it and the adrenal support we are on.....which we had stopped. With canceling our insurance it will give us a little bit of money but I'm hoping to primarily have that to pay down one of our credit cards quickly. Time will tell whether that will pan out or not. With all of us taking chlorella, if it works out that way, it would mean 3 bottles a month.

Judyin Philly Enthusiast
Judyin Philly
Posted

Andrea just went to d/s to see if you'd posted but came here to see.

Glad you had a good phone consult.

j

Judyin Philly Enthusiast
Judyin Philly
Posted

RACHEL THIS WAS HELPFUL THANKS SO MUCH- I HAVEN'T BEEN ON ALOT BUT CAME TO CK ON ANDREA AND THEN WENT BACK TO CK ON HOW YOU DID ON THIS 'THING' YOUR DOING :lol:

MAY I PLEASE POST ON THE OXALATE THREAD? I'LL WAIT TO HEAR...HAVE TO GET TO BED.

NITE ALL

_______________________________________________________________

Interestingly on the report it lists causes for low calcium and oxalates are mentioned....the explanation is...

Excessive oxalates...which may form insoluable calcium salts in the intestine.

Other causes...

Insufficient dietary intake

Insufficient gastric acidification

Inadequate vitamin D

Excessive phosphates, oxalates or phytates

Intestinal absorption of calcium is also hindered in cases nof lipid malabsorption

Undigested fats can form insoluable calcium compounds

A very low protein diet or an overly alkaline intestine can result in poor calcium intake

Insufficient acidophilic flora can impair calcium intake

So alot of things could be a cause for me...the oxalates do seem to a problem based on my response to those foods. I eat very high protein (meat)...anyone know if thats a good source of calcium or could the problem be dietary intake??

morganb Newbie
morganb
Posted

So I'm sitting here "writing a paper".... you can tell I'm getting far can't you? lol Anyways, I thought of how long it's been since I stopped by. Umm that amount of time = a long time.

SO HELLO EVERYONE!!!! I hope everyone is doing well :D

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Ridgewalker Contributor
Ridgewalker
Posted
So I'm sitting here "writing a paper".... you can tell I'm getting far can't you? lol Anyways, I thought of how long it's been since I stopped by. Umm that amount of time = a long time.

SO HELLO EVERYONE!!!! I hope everyone is doing well :D

omg, you've GOT to be one of Carla's kids. You look just like her!

:D

AndreaB Contributor
AndreaB
Posted
So I'm sitting here "writing a paper".... you can tell I'm getting far can't you? lol Anyways, I thought of how long it's been since I stopped by. Umm that amount of time = a long time.

SO HELLO EVERYONE!!!! I hope everyone is doing well :D

Hey Stranger!!!!

It's good to see you. :D

That paper must be a real good paper. :P

AndreaB Contributor
AndreaB
Posted
omg, you've GOT to be one of Carla's kids. You look just like her!

:D

Yes she is......Carla's oldest. Very sweet young lady IMO.

Ridgewalker Contributor
Ridgewalker
Posted

Nice to meet you, Morgan!

morganb Newbie
morganb
Posted

Nice to meet you too, Rigdewalker :D

Thanks for the complement Andrea ("very sweet young lady") :rolleyes:

Yeah this paper is awesome!... obviously! haha... all about the archetypes of women in science fiction.... what the heck did I get myself into??? Almost done though and then time to study for an economics test. YAY! THRILLING!!!

AndreaB Contributor
AndreaB
Posted
Almost done though and then time to study for an economics test. YAY! THRILLING!!!

Is sleep in the equation anywhere? Sleep is a very important ingredient to good grades.

Economics.......don't remember how I did in that.......not my most favorite subject.

Ridgewalker Contributor
Ridgewalker
Posted
Nice to meet you too, Rigdewalker :D

Thanks for the complement Andrea ("very sweet young lady") :rolleyes:

Yeah this paper is awesome!... obviously! haha... all about the archetypes of women in science fiction.... what the heck did I get myself into??? Almost done though and then time to study for an economics test. YAY! THRILLING!!!

Actually that sounds right up my alley! Of course I was an English major, and adore science fiction.

Make sure you mention the works of Marion Zimmer Bradley, Andre Norton, and Anne McCaffrey. Nobody contributed more in the way of female characters in sci-fi than MZB.

On the opposite end, of course, there's Robert Heinlein's female characters- while very different than their female-created counterparts, it's simplistic to think of them as weak. Would make a great contrast-comparison.

Before I get yelled at for being off-topic... What class is this for, out of curiosity?

morganb Newbie
morganb
Posted
Is sleep in the equation anywhere? Sleep is a very important ingredient to good grades.

Economics.......don't remember how I did in that.......not my most favorite subject.

To be honest... no, not really... well, some. Tonight is a late night. I'm only going to get enough to get by and not fall asleep during my test. There are several girls in the house who have been pulling all nighters this week... I don't know how they do it, especially after this weekend when we all stayed up and standing for 36 hours for dance marathon. (This is a huge philanthropy which raised over a million dollars for Riley Hospital.) I have to get some sleep, so don't worry too much. I just won't get a lot.

And economics is just not a memorable subject. I have to take for my journalism major, but I don't know when I'll use it....

AndreaB Contributor
AndreaB
Posted
...especially after this weekend when we all stayed up and standing for 36 hours for dance marathon. (This is a huge philanthropy which raised over a million dollars for Riley Hospital.)

I don't think I could have done that even at your age! Maybe 24 but not 36. :huh:

Glad the fundraiser was so successful though.

Are you still gluten free or mostly so?

morganb Newbie
morganb
Posted
Actually that sounds right up my alley! Of course I was an English major, and adore science fiction.

Make sure you mention the works of Marion Zimmer Bradley, Andre Norton, and Anne McCaffrey. Nobody contributed more in the way of female characters in sci-fi than MZB.

On the opposite end, of course, there's Robert Heinlein's female characters- while very different than their female-created counterparts, it's simplistic to think of them as weak. Would make a great contrast-comparison.

Before I get yelled at for being off-topic... What class is this for, out of curiosity?

Thanks! Yeah, I definitely found Heinlein... but I hadn't found the others. I've been concentrating on why and how authors portray women as weak and rarely make them the fantastic heroes of the story. This is for a Science Fiction, Fantasy and Western Tradition class

morganb Newbie
morganb
Posted
I don't think I could have done that even at your age! Maybe 24 but not 36. :huh:

Glad the fundraiser was so successful though.

Are you still gluten free or mostly so?

I had never pulled an all nighter before that so I was really nervous... but it started at night so I was actually up for longer than 36 hours.... I was actually up for 47 hours. I crashed sunday at 8:30 am and slept for 21 hours....

I'm not gluten free any more... Now that I live in a sorority I have no control over my meals, so I started eating it again... sometimes I avoid it, but it's practically impossible to do that all the time.

Ridgewalker Contributor
Ridgewalker
Posted
Thanks! Yeah, I definitely found Heinlein... but I hadn't found the others. I've been concentrating on why and how authors portray women as weak and rarely make them the fantastic heroes of the story. This is for a Science Fiction, Fantasy and Western Tradition class

That class sounds fun! I bet the paper will be great. Good luck!

morganb Newbie
morganb
Posted
That class sounds fun! I bet the paper will be great. Good luck!

The class is pretty fun... it's just easy to get behind on the readings. And yeah the paper's not that bad... I thought it was going to be absolutely terrible, but I finally did my research and made an outline last night, so it's going really smoothly tonight. And it's pretty interesting. Plus I found out that I have two less pages to write! That makes it good too lol. Thank you!

confusedks Enthusiast
confusedks
Posted

Morgan,

Hello! I have never "met" you, but I have talked to your mom on the phone...she is really sweet! She talked about you and your homeschool experience, it's a long story but I have started online school because of medical stuff (possible Lyme) and I was influenced largely by your moms ideas. :)

Andrea,

That is right...it is mostly insurance crap!!! I am going to be really pissed off if they don't step in.

Everyone,

My mom talked to my GP and he basically said to be under the care of my Hematologist, so we are just going to put my GP's name on the paperwork for the LLMD. If they call my GP's office, then let them...at this point I don't care at all. Good night everyone!!!

Kassandra

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
RACHEL THIS WAS HELPFUL THANKS SO MUCH- I HAVEN'T BEEN ON ALOT BUT CAME TO CK ON ANDREA AND THEN WENT BACK TO CK ON HOW YOU DID ON THIS 'THING' YOUR DOING :lol:

MAY I PLEASE POST ON THE OXALATE THREAD?

Judy....of course you can post it in the oxalate thread. :)

I had planned on doing that but I never got to it. :ph34r:

It was the results from my DMPS challenge test which pulls out heavy metals. Unfortunately, the drawback is that it also pulls out the essential elements as well. The lab tests everything and I was found to be low in calcium and selenium.

It was right after the test that I started taking alot of calcium because of oxalates....so hopefully I'm not so low anymore.

I have another IV DMPS later on today but there will me no urine test with this one....just trying to pull more mercury out.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Hi Morgan....good to "see" you. :)

Love the new pic.

Sarah...yeah all of Carla's girl's look like Carla. :lol:

CarlaB Enthusiast
CarlaB
Posted
So I'm sitting here "writing a paper".... you can tell I'm getting far can't you? lol Anyways, I thought of how long it's been since I stopped by. Umm that amount of time = a long time.

SO HELLO EVERYONE!!!! I hope everyone is doing well :D

HI MO!!!

omg, you've GOT to be one of Carla's kids. You look just like her!

:D

:lol: :lol: I can't deny her, can I?

Is sleep in the equation anywhere? Sleep is a very important ingredient to good grades.

Keep telling her this ....

To be honest... no, not really... well, some. Tonight is a late night. I'm only going to get enough to get by and not fall asleep during my test. There are several girls in the house who have been pulling all nighters this week... I don't know how they do it, especially after this weekend when we all stayed up and standing for 36 hours for dance marathon. (This is a huge philanthropy which raised over a million dollars for Riley Hospital.) I have to get some sleep, so don't worry too much. I just won't get a lot.

It's a huge philanthropy at IU every year .... I was at a spa getting massages and stuff and taunting her with text messages about it. ;):lol::D

Morgan,

Hello! I have never "met" you, but I have talked to your mom on the phone...she is really sweet! She talked about you and your homeschool experience, it's a long story but I have started online school because of medical stuff (possible Lyme) and I was influenced largely by your moms ideas. :)

Yeah, I wanted you two to talk, you'd really get along. :)

Everyone,

My mom talked to my GP and he basically said to be under the care of my Hematologist, so we are just going to put my GP's name on the paperwork for the LLMD. If they call my GP's office, then let them...at this point I don't care at all. Good night everyone!!!

Kassandra

This is great, so are you keeping your Friday appt?

Sarah...yeah all of Carla's girl's look like Carla. :lol:

Yeah, it's true, I'll put up my old avatar with all of us. :)

OMGosh! This cough has me sounding like a smoker! I hope I don't cough up a lung ... or a tapeworm! :lol: Saw more of it today .... :ph34r:

dlp252 Apprentice
dlp252
Posted
We also had a Jane Austen-style ball, and saw the GI specialist today. That appointment was horrid. Within 5 min, Mom and the Dr. were in the middle of a major power struggle, and it was just awful. I told Mom way back when she made an appointment that seeing the Dr would be pointless, and it was doubly so since the GI knew nothing about Celiac, ignored everything we said about allergies (apparently allergies don't effect the GI system at all :angry: ), and then Mom had to bring up Lyme! :angry:<_< So I have an endoscopy scheduled with a different Dr. in the practice to get a biopsy for celiac (which is pointless, utterly pointless) and (hopefully) for the strictures in my throat (which she said weren't strictures at all, but spasms from acid... which I'm not really buying for many reasons). And the Dr. was very insistent that I go on meds for acid reflux, as well as extremely rude. I'm not sure who fired who first, us or the dr! <_<

I am NOT going to do them without a PICC or central line! :angry: I will put my foot down. I already have a huge bruise on my arm from the blood draw 2 days ago! :angry:

Ugggg...stupid doctors! :angry:

Chocolate is a difficult one to get off of. I haven't been buying it lately.

Yep, and I'm not even buying it, lol. One of the pitfalls of working in a large office...everyone has candy on their desks around holidays like Halloween, Christmas, Valentines day, etc. Can't avoid it, and unfortunately there's something DRIVING the binging...can't figure out if it's mental (I'm always mental anyway :lol: ) or if it's deficiencies of some sort. I started taking extra magnesium just in case. I'm supposed to be taking at least 500mg every day anyway and I haven't been, so I was hoping that was it.

The phone consult went well. Dr. E is sending us a mineral taste testing kit for all of us to use. She wasn't too sure about Seth but said we could watch his facial expressions.

I'm to try Micah and Talitha on the chlorella and see how they do. I'm hoping that at least Talitha will be ok with it because that would help us out a lot. Her modifilan only last about 22 days whereas the chlorella would last her 60 and cost about the same. She also wants Mitch and I to stay on it and the adrenal support we are on.....which we had stopped. With canceling our insurance it will give us a little bit of money but I'm hoping to primarily have that to pay down one of our credit cards quickly. Time will tell whether that will pan out or not. With all of us taking chlorella, if it works out that way, it would mean 3 bottles a month.

Oh, really hoping the chlorella works well for all!

So I'm sitting here "writing a paper".... you can tell I'm getting far can't you? lol Anyways, I thought of how long it's been since I stopped by. Umm that amount of time = a long time.

SO HELLO EVERYONE!!!! I hope everyone is doing well :D

Hi Morgan, nice to see you again!

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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