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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I sold my first rinne bar from my restaurant yesterday, wahoo!!!

Yay Rinne!! Thats soooo exciting.....I bet your sweetie is really proud of you. :)

I need help! Let me be specific, I need good help that shows up and pays attention. :lol:

Well that pretty much rules me out. :lol:

I'm really good at showing up (although my new boss probably wouldnt agree :P ) but paying attention??? Omg...thats just WAY too much to ask. :lol:

I am not ready to experiment with gluten unlike that wild child :ph34r: Miamia. :lol:

LMAO! :lol:

Yup...I think she's definately got a wild side....she's had Big Macs!! :o

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Guest LittleMissAllergy
Guest LittleMissAllergy
Posted

Hey everyone- how are you all? Is it horribly hot where you are all at too? I sure hope not.

So I started the doxy yesterday, but had the most horrific day yet today...mainly because it was 100 degrees out and we have no air conditioning (over 100 degrees in the house) and I think I may be herxing...so I skipped out on doxy and only took one dose of Biaxin instead of two. I just didn't think my body could handle much more. I was scared. Anyone know if it is particularly dangerous to skip out on a dose or two here and there? I felt like maybe it'd be more dangerous if I DIDNT skip out. I don't know though. I'm not a lyme expert.

I DO get to see my lyme expert tomorrow...my LLMD. I also get to have bioSET and accupressure, but that makes me a little nervous in itself because I started to herx after my last treatment on the way home in the car. I don't think that's supposed to happen...it's supposed to make you feel BETTER...so I'll have to let her know.

Oh and Kassandra, I wanted to respond to your posts about Cali...how do you find all of these lyme friends??? lol. That's very cool, you'll have to ask her what part of northern California she's from and let me know :) Is it burning up down there too? Oh and I'm glad to hear that your pulled muscle thingy is feeling better!

EDIT:

Update- I sucked it up and took the Biaxin, but no doxy today. I just can't do it.

mftnchn Explorer
mftnchn
Posted

Jin, so good to have your update. Yes, I am fine although I am a bit keyed up as this has triggered memories for me of the bad quake I was in 9/99.

I have been asked to go help in the area; a friend of mine is a doctor in Chengdu and is working closely with the Red Cross. Of course I want to help, but have to figure out if I can handle it physically and figure out how to manage food-wise. I cannot go right away because of training responsibilities for the next week.

Its not easy to say no; there are very few trained counselors in China especially who are bilingual.

Sherry

AndreaB Contributor
AndreaB
Posted
Jin, so good to have your update. Yes, I am fine although I am a bit keyed up as this has triggered memories for me of the bad quake I was in 9/99.

I have been asked to go help in the area; a friend of mine is a doctor in Chengdu and is working closely with the Red Cross. Of course I want to help, but have to figure out if I can handle it physically and figure out how to manage food-wise. I cannot go right away because of training responsibilities for the next week.

Its not easy to say no; there are very few trained counselors in China especially who are bilingual.

Sherry

I'll be thinking of you Sherry.

That's a tough decision.

mftnchn Explorer
mftnchn
Posted
Sherry

About which kind of DQ2, the 2,2 or 2,5, the labs have started to report them and to list upp the cchances of getting celiac on a list.

read this thread here:

Open Original Shared Link

so to make clear that you do not have double 2,2 it might be more clear to post that you have two copies of 0201 just like you did, or to write 2,5 and 2,5, or whatever what the labs and researchers will end up with. This is all new now and see how this list confuses people when they do not write 2,2 for the low risk DQ2 and 2,5 for the high risk 2,5.

nora

I notice according to Enterolab (rechecking my results on the site) they say I am DQ 2,2. So now I am confused!

Sherry

confusedks Enthusiast
confusedks
Posted
Hey everyone- how are you all? Is it horribly hot where you are all at too? I sure hope not.

...

Oh and Kassandra, I wanted to respond to your posts about Cali...how do you find all of these lyme friends??? lol. That's very cool, you'll have to ask her what part of northern California she's from and let me know :) Is it burning up down there too? Oh and I'm glad to hear that your pulled muscle thingy is feeling better!

It is really hot here too! It was 90 today, and it's 12.30 AM and its still 75 degrees! :o It's going to be 101 tomorrow.

I know her from a Lyme Warriors group through the Yahoo (if that becomes Lame Advertisement...it's y/a/h/o/o) groups. We talk on the phone quite a bit, and it really helps to know she understands.

I haven't met her yet...but I will hopefully meet her this summer. :)

About the meds, I'm sorry! I understand how horrible meds can make you feel. I really do get it! About the acupupressure and stuff, I'm the same way. It only stirs things up...I don't feel better after them. I don't feel worse, but I also don't feel better.

confusedks Enthusiast
confusedks
Posted

One more thing...just a little venting. ;) I am on the sulfur free diet, very strictly and as Rachel knows...there isn't a lot to eat!

My stomach hurts more than ever! I wonder if it's because the diet is so boring, I find myself not eating in order to avoid trying to figure out what to eat. So if I'm hungry all the time, that might be why my tummy is bothering me so much.

It's a gnawing, burning pain. It's so strange...and new! :lol::P

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mftnchn Explorer
mftnchn
Posted

Kassandra, could you try DGL (licorice powder) for the stomach? It sure helps me, but I don't know if it is on the list or not with your diet. So sorry for all you are going through.

mftnchn Explorer
mftnchn
Posted

Nora, I think I figured out the issue with my gene type. I read that Enterolab's gene testing is done by a lab that doesn't test the alpha allele only the beta alleles, so actually I don' t know if I am 2.2 or 2.5 or some combo of both. At least that is the sense I am making of this whole picture and fits in with your post on the other thread, I think.

Sherry

CarlaB Enthusiast
CarlaB
Posted
Its not easy to say no; there are very few trained counselors in China especially who are bilingual.

If you do go, you need to be sure the stress of being there doesn't set you back Lyme-wise. The food isn't the only issue.

I'm sure you're needed there, but you're needed in what you do regularly. If you were to experience a set-back in your health for having gone, then you won't be able to get your normal, important work done.

I recently had to make the hard decision to say no to helping out with World Youth Day in Sydney, Austrailia. I'm one of a handful of people trained to do the youth work we do, so it was a hard decision. I thought about it for several weeks before I made up my mind.

It's not selfish to know your limitations.

I can't believe how hot it is in CA! :o We were 57 degrees and raining yesterday. We don't get into the 100's until Aug. We've been into the 80's but not near the 90's yet. Our weather fluctuates a LOT in the spring. Today sunny and 69.

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted
One more thing...just a little venting. ;) I am on the sulfur free diet, very strictly and as Rachel knows...there isn't a lot to eat!

My stomach hurts more than ever! I wonder if it's because the diet is so boring, I find myself not eating in order to avoid trying to figure out what to eat. So if I'm hungry all the time, that might be why my tummy is bothering me so much.

It's a gnawing, burning pain. It's so strange...and new! :lol::P

Yay for venting, venting makes it a *little* better! Please, you're always such a trooper, vent away!

And I get that horrible gnawing pain too in my stomach...it's like you're starving in a way you've never starved before...right? But you know you're really not...and it doesn't feel like your body is screaming for food...it just feels like it's...well...screaming. lol. I think it's because my diet is so limited as well. I'm limited to things that are super low calorie so unless I eat mass quantities, I don't think my stomach is happy. The thing that I've really found that helps is Bob Redmill's hot brown rice cereal. The only ingredient is brown rice I believe. Is that okay on your diet? If not, maybe you could find a hot cereal that is? Yesterday the house got up to 110 degrees inside because we've got no air, and hot cereal didn't sound appealing, but i HAVE to eat it because it's one of the only things I CAN eat...so I made it and put it in the fridge! An hour later I ate it and it tasted like what I kind of remember pudding tasting like (though I haven't had anything like pudding in three years). :)

AndreaB Contributor
AndreaB
Posted
I can't believe how hot it is in CA! :o We were 57 degrees and raining yesterday. We don't get into the 100's until Aug. We've been into the 80's but not near the 90's yet. Our weather fluctuates a LOT in the spring. Today sunny and 69.

We are unseansonably warm for the weekend. Supposed to be in the mid 90's today, which is almost unheard of for Washington, even during the summer.

Good points for Sherry. I'm sorry you had to pass up Australia. :(

dlp252 Apprentice
dlp252
Posted

Yeah, it's HOT here, lol. Rachel is LOVING this I'd bet! :P

confusedks Enthusiast
confusedks
Posted
Kassandra, could you try DGL (licorice powder) for the stomach? It sure helps me, but I don't know if it is on the list or not with your diet. So sorry for all you are going through.

I'll have to look into that.

And I get that horrible gnawing pain too in my stomach...it's like you're starving in a way you've never starved before...right? But you know you're really not...and it doesn't feel like your body is screaming for food...it just feels like it's...well...screaming. lol. I think it's because my diet is so limited as well. I'm limited to things that are super low calorie so unless I eat mass quantities, I don't think my stomach is happy. The thing that I've really found that helps is Bob Redmill's hot brown rice cereal. The only ingredient is brown rice I believe. Is that okay on your diet? If not, maybe you could find a hot cereal that is? Yesterday the house got up to 110 degrees inside because we've got no air, and hot cereal didn't sound appealing, but i HAVE to eat it because it's one of the only things I CAN eat...so I made it and put it in the fridge! An hour later I ate it and it tasted like what I kind of remember pudding tasting like (though I haven't had anything like pudding in three years). :)

That's a great idea about the rice cereal...I do already have some. I can actually have brown rice cereal! :o The thing is that's so frustrating is that I don't feel different so far on the diet. It's SO limited, and I still don't feel better, LOL! I'm still as nauesous as I was before after everything I eat. Very frustrating. ;)

I don't know how you handled 110 degrees! That's crazy. My mom and I argue about the air all the time...shes always colder than I am. But I also get babesia night sweats. So if the air isn't high, it makes it even harder to sleep.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yeah, it's HOT here, lol. Rachel is LOVING this I'd bet! :P

OMG...yesterday I felt so comfortable! It was perfect for me! Yeah....I'm never wanting this to end! :D

CarlaB Enthusiast
CarlaB
Posted
I'm sorry you had to pass up Australia. :(

Thanks. It would have been stupid of me to go. I can't believe it took me a couple weeks to figure that out. :)

It's nice here. I don't like that kind of heat. I'm with Kassandra and the night sweating. I think that's why I'm back on Mepron, LOL. I mentioned to the PA that I wake up hot and a little sweaty at night, kick the covers off, then wake up a little while later freezing. I guess I thought that was normal. :P I mean, it's not like before when I'd wake up drenched, LOL. I guess it's not so normal when your bedroom is only 65 degrees. :lol: No, we don't have the air on, it just gets cold at night and we don't have the heat on either.

So far I'm feeling better off the other meds, and these new ones haven't hit me yet. I've been a little more functional since the fever is gone. The PA was thinking that it wasn't a herx, rather I was just getting worse because I was on the wrong meds.

Day four is usually my big days starting new meds ... that will be Sunday.

confusedks Enthusiast
confusedks
Posted

Does anyone know...Dr H ordered some food intolerance testing, and I know they aren't very accurate, BUT does anyone have any idea, if I take the foods out of my diet, how long will they show up in my blood?

Kinda like...for celiac blood work, if someone cut gluten out and waited 4 days...would it make a difference?

I am on a total roll with the sulfur free diet, so I don't want to stop midstream, but I do want the blood work for food done, but I wonder if there is any point?

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted

I really don't know how those of you who have lyme do this every day...I've only been having these intense symptoms for 3 weeks now (only been on antibiotics for a week) and I just don't know what to do with myself. My symptoms freak me out, and I'm just not used to feeling SO sick. I don't know how you guys do this...I can barely walk. I'm so dizzy, I can't breathe, I have weird pains in practically every organ. How do you guys keep yourselves so calm and collected...

But anyways...I have a quick question that may be TMI...

I'm seeing my LLMD today and I'll tell him this too, but last month around the same time I had some pale/greyish stool, and it started back up again today. I'm just wondering if anyone has had this...

Thanks for being here you guys. I think I'd go crazy if I wasn't in communication with people that have done this, or who are doing this right now...

<3

CarlaB Enthusiast
CarlaB
Posted

Well, I was really sick before I started treatment so by the time I realized what was wrong and was being treated for it, I was so glad to know that I'd eventually get better that I had no reason to not be calm.

I got sicker when I herxed 24 days into treatment, but again, I expected it.

Hang in there with treatment, you will get better. I hope you're drinking a lot and replacing electrolytes as the heat may be contributing to how bad you feel.

confused Community Regular
confused
Posted

All of you talking about the hot weather has me so jealous. We are still in the 50 and 60 range with rain and snow im parts of colorado lol.

I just wanted to pop in and say hi to everyone. Things are going good. I am just overwhelmed with the kids graduations next week and an birthday party for my son that has birthday in the summer. Plus on tuesday they will start demolotion on my porch, we are buidling an new one cause this one is bad. I figured the mold problems was not as bad as I thought might as spend the money on something lol. Im still waiting for someone to clean the mold out of the boiler room. But after throwing the dog food away, im feeling better lol.

Im hoping my hair test will be in tommorow, but im sure it wont be til tuesday. It seems i always get things back closer the end of the time frame then the beginning lol

paula

miamia Rookie
miamia
Posted

hey all-

I am having a really rough week I had to go off my meds for this test. and I went into major withdrawl I ahve been so ill. I started back on them today but my god it won't end I am preying by tomorrow I ahve some relief. I almost went to the emergency room but i know there is nothing they can do for me there.

kassandra -

I used to have major swallowing problems. the diagnosed me with esophogeal spasms and I had to have 2 esophogeal dialations. not fun.

AndreaB Contributor
AndreaB
Posted
hey all-

I am having a really rough week I had to go off my meds for this test. and I went into major withdrawl I ahve been so ill. I started back on them today but my god it won't end I am preying by tomorrow I ahve some relief. I almost went to the emergency room but i know there is nothing they can do for me there.

I hope you feel better by tomorrow.

I'll be thinking of you. :):wub:

miamia Rookie
miamia
Posted
I hope you feel better by tomorrow.

I'll be thinking of you. :):wub:

thanks andrea you're the best

elisabet Contributor
elisabet
Posted
hey all-

I am having a really rough week I had to go off my meds for this test. and I went into major withdrawl I ahve been so ill. I started back on them today but my god it won't end I am preying by tomorrow I ahve some relief. I almost went to the emergency room but i know there is nothing they can do for me there.

kassandra -

I used to have major swallowing problems. the diagnosed me with esophogeal spasms and I had to have 2 esophogeal dialations. not fun.

Hi

How are you today?

Hope you are better.

nora-n Rookie
nora-n
Posted

Sherry,

the confusion is because they just changed how they post results between then and now.

Back then they would just list double DQ2 as 2,2.

Now 2,2 means the less risk beta 0202.

The more correct way now would mean like you posted, beta 0201, beta 0201 , or DQ2,5, DQ2,5 or whatever they end up using in the future.

The meaning of 2,2 has now changed, that is all.

DQ5 was listed as DQ1 subtype 5, in short 1,5 but n the wikipedia page they have now two kinds of DQ5. They have DQ5,1 which is alpha 0101 beta 0501,

and DQ5,2 which is alpha 0102 and beta 0502 now.

And other souces call alpha*01 and beta *05 just DQ1 I think.

I think we will se more changes soon.

nora

I notice according to Enterolab (rechecking my results on the site) they say I am DQ 2,2. So now I am confused!

Sherry

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

      By trents · Posted

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

      By catnapt · Posted

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    • trents
      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
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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