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Omg...i Might Be On To Something

Rachel--24

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miamia Rookie
miamia
Posted

just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

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confusedks Enthusiast
confusedks
Posted
just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

:lol: Good for you! :)

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

CarlaB Enthusiast
CarlaB
Posted
true...it wasn't a provoked urine test, was it? because i don't think that's the best idea if i'm having detox issues, but i've heard that the mineral levels or something from the hair analysis can be the big clue

Yes, it was a provoked urine test. Rachel would be the one to answer this .... she had to wait to do her provoked urine test.

just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

And, how have you been doing with these foods?

Random question: anyone have a hard time swallowing?

No, but I've seen people mention it on LN.

AndreaB Contributor
AndreaB
Posted
just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

So how are you doing with it? You're not looney bins if your handling it. :)

miamia Rookie
miamia
Posted

im actually handling some of the foods its crazy I went from being able to tolerate nothing to being able to tolerate weird stuff but I am still uncomfortable but the thing is no more form these foods than really safe foods so I kind of figure why not go for it

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted
:lol: Good for you! :)

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

Hi Kassandra...I do have a lot of problems with my throat, if it makes you feel any better. I know it just sometimes helps to hear that your symptoms are somewhat "normal" (normal...whatever that means lol). For me, it usually affects my breathing more than my swallowing. Are you having breathing difficulties?

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

I just feel soooo weird, and it's giving me this weird anxious feeling. I have this strange tingly, dizzy feeling in my head and I feel weak and shaky and out of breath, and the left side of my face feels weird. It comes in waves and I go from nauseated to starving in seconds. My whole body just gets these weird feelings and I get all freaked out...

Anyone ever experience ANY of that? Sound like a herx?

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

Hope everyone is well.... <3

tabasco32 Apprentice
tabasco32
Posted
Hi Kassandra...I do have a lot of problems with my throat, if it makes you feel any better. I know it just sometimes helps to hear that your symptoms are somewhat "normal" (normal...whatever that means lol). For me, it usually affects my breathing more than my swallowing. Are you having breathing difficulties?

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

I just feel soooo weird, and it's giving me this weird anxious feeling. I have this strange tingly, dizzy feeling in my head and I feel weak and shaky and out of breath, and the left side of my face feels weird. It comes in waves and I go from nauseated to starving in seconds. My whole body just gets these weird feelings and I get all freaked out...

Anyone ever experience ANY of that? Sound like a herx?

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

Hope everyone is well.... <3

All of what you said has been happening to me these past few weeks. Very anxious like I want to get to the end of a large book or something. WHat is this feeling anyway? Especially at night before bed.

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confusedks Enthusiast
confusedks
Posted
Hi Kassandra...I do have a lot of problems with my throat, if it makes you feel any better. I know it just sometimes helps to hear that your symptoms are somewhat "normal" (normal...whatever that means lol). For me, it usually affects my breathing more than my swallowing. Are you having breathing difficulties?

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

I just feel soooo weird, and it's giving me this weird anxious feeling. I have this strange tingly, dizzy feeling in my head and I feel weak and shaky and out of breath, and the left side of my face feels weird. It comes in waves and I go from nauseated to starving in seconds. My whole body just gets these weird feelings and I get all freaked out...

Anyone ever experience ANY of that? Sound like a herx?

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

Yea, breathing is hard. Apparently it's air hunger though. I asked my LLMD about asthma and he said that it probably isn't asthma, it's probably bad air hunger because we lowered the dose of my mepron.

You can definitely herx after a couple days. Some people it takes longer, but some people it takes only a couple days. When I started flagyl last week, I started herxing REALLY hard the next day! So...it's possible.

And the nausea then starving thing...I totally get that too! I can go from "move out of my way I'm going to puke" to "move out of my way, I need to eat all the food in the fridge" in two seconds! It's really hard to deal with that, because I get really hungry, then I don't think I need to bring food with me if I'm going somewhere, but then I'm SO hungry. Very frustrating indeed. ;)

ShadowSwallow Newbie
ShadowSwallow
Posted

Dr's appointment and support group meeting today. I should be sending out an email soon. :)

:wub: Birdy

AndreaB Contributor
AndreaB
Posted

I'll be looking forward to it Birdy. :)

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted
Yea, breathing is hard. Apparently it's air hunger though. I asked my LLMD about asthma and he said that it probably isn't asthma, it's probably bad air hunger because we lowered the dose of my mepron.

You can definitely herx after a couple days. Some people it takes longer, but some people it takes only a couple days. When I started flagyl last week, I started herxing REALLY hard the next day! So...it's possible.

And the nausea then starving thing...I totally get that too! I can go from "move out of my way I'm going to puke" to "move out of my way, I need to eat all the food in the fridge" in two seconds! It's really hard to deal with that, because I get really hungry, then I don't think I need to bring food with me if I'm going somewhere, but then I'm SO hungry. Very frustrating indeed. ;)

My LLMD told me I was having "air hunger" too! It's not very fun, is it? I'm sorry that's what you're dealing with right now. That's one of my least favorite symptoms (hmm perhaps "favorite" wasn't the right word...) because you can't do anything about it. I considered the asthma/inhaler idea as well, because I was diagnosed with "asthma" when I was little, but I brought this up with my LLMD and he almost laughed. He said it's definitely not asthma, and he's definitely not letting me inhale a steroid lol.

Oh gosh I remember flagyl...that was the roughest thing I've ever been on. I didn't know I had lyme when I took it back then...so I had no idea what was happening to me. Are you still on it? I'm going to guess that you are, since you're experiencing air hunger (though I do get that when I'm not in a flare sometimes).

Yea these stomach issues are SO weird. It feels like someone pumped some air in there and it's moving around like crazy, kind of like the same feeling you'd get when you're starving...then I'm nauseated, then it starts cramping like crazy. It's hard not to get all anxiety ridden about it. I think lyme is making me a hypochondriac. lol. I'm sitting here thinking I have a stomach ulcer or that my swollen spleen is going to burst. Ugh. Lyme is SO weird.

Moonstone Newbie
Moonstone
Posted

Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I am gluten intolerant and chemically sensitive, (although my official dx is crohn's disease), and I am trying to find any info from people who have tried the ketotifen, what their experience with it has been. Did it help you at all? Did you find it to have any major side effects?

What a wonderful site, I wish I had found it sooner! I've sure enjoyed reading as many posts as I could this evening!

AndreaB Contributor
AndreaB
Posted

Welcome Moonstone! :D

You are in the right place.

I don't have any answers for you on the ketotifen though.

mftnchn Explorer
mftnchn
Posted
Sherry, how did you fare with the earthquake?

Hey, everyone, I'm fine and thanks for thinking of me. I am quite far away from the area and didn't feel anything. I do have good friends in the area, but heard from them and they are fine too. We are all very grateful. The news is horrible.

Sherry

mftnchn Explorer
mftnchn
Posted
:lol: Good for you! :)

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

Yes, I have that. Dr. E had me doing laser on it, but I haven't since I got back to China. Need to remember to do that.

Sherry

mftnchn Explorer
mftnchn
Posted

Welcome Moonstone. You are in the right place. I don't know about the K...haven't tried that.

Sherry

rinne Apprentice
rinne
Posted

Hi all, I can't keep up :( but I am thinking of you all. :)

I sold my first rinne bar from my restaurant yesterday, wahoo!!! I am working seven days a week, six hours a day behind the grill, doing all the cooking, shopping and cleaning. I need help! Let me be specific, I need good help that shows up and pays attention. :lol:

I am not yet marketing from the gluten and dairy free angle but will once I get the place tuned up a little more. I've decided I just have to make it my kitchen, a place I love to be and a place where friends and friends to be (perhaps) may come by, eat good food and visit. I am told I make a great burger but I haven't tasted one, I am not ready to experiment with gluten unlike that wild child :ph34r: Miamia. :lol:

I am so happy for you Miamia, I hope your health continues to improve. Mine has and I credit this board with supporting that, not just through the obvious and very important scientificness (much thanks to Rachel) but through our collective spirit which I know to be healing.

For those of you who don't know me, it has been just over five years now since the tick bite and rash, for the first two years the pain migrated round my body manifesting in different ways and then my digestive system crashed and I melted and lost 40 pounds. Since then I have decided that after fifty a little fat is our friend. :lol: Then I spent the best part of two years horizontal, in pain and distress. I would say on a scale of 1 - 10, 1 being the least and 10 the worst, most of that time was around an 8. This past year I have seen improvements and though I wouldn't say that I have completely recovered I know now that my health has returned, I have stamina again.

I never went the ABX route.

Off to restaurant world, enjoy the day.

:wub:

CarlaB Enthusiast
CarlaB
Posted

Rinne, woohoo!

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

Four days is a very common point to herx from a new med. It seems to be the magic number .... many on LN mention 4 days, and the past couple meds I've been on caused me to herx at exactly four days.

My LLMD told me I was having "air hunger" too! It's not very fun, is it?

No, I hate it. It's from babesia ..... were you diagnosed with babs? Babs treatment is what helps it clear up. I had a little shortness of breath that cleared with bartonella treatment, but the severe air hunger went away with babs treatment.

Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I am gluten intolerant and chemically sensitive, (although my official dx is crohn's disease), and I am trying to find any info from people who have tried the ketotifen, what their experience with it has been. Did it help you at all? Did you find it to have any major side effects?

What a wonderful site, I wish I had found it sooner! I've sure enjoyed reading as many posts as I could this evening!

Welcome! Sorry, I don't know anything about the med.

Hey, everyone, I'm fine and thanks for thinking of me. I am quite far away from the area and didn't feel anything. I do have good friends in the area, but heard from them and they are fine too. We are all very grateful. The news is horrible.

Sherry

Glad to hear you and your friends are fine. :)

confused Community Regular
confused
Posted

Rinne,

Im glad things are going so well for you. How exciting to sell your first rinne bar, did you frame the money you got from it or an pic of the person that bought it.

Everyone,

Im just reading along. Im kinda in an weird place right now. I have no idea why tho. Maybe once I get my hair test back, I can think more clearly.

I am having sinus problems and Gi problems that are driving me completly crazy. MY sotmach feels like their are rocks that are stuck and that need to come out lol. I think it is time I make that juice that sherry posted and see if that helps.

I am going to get the spray stuff for the boiler room by the end of the week and going to get all that mold killed. I am also going to call somone to come and deep clean the whole house from top to bottom. Im thinking there might be a collection of dust and junk on top of the cabinets in the kitchen that are to blame for some of my issues. But everytime i stand up there in the last few years, I feel off the cabinets, so I dont want to check lol.

paula

CarlaB Enthusiast
CarlaB
Posted
Im thinking there might be a collection of dust and junk on top of the cabinets in the kitchen that are to blame for some of my issues. But everytime i stand up there in the last few years, I feel off the cabinets, so I dont want to check lol.

It could be part of it anyway. Dust is terrible to me! I dust the top of my cabinets, doors, baseboards, under the sofa, etc. every other week!

confused Community Regular
confused
Posted
It could be part of it anyway. Dust is terrible to me! I dust the top of my cabinets, doors, baseboards, under the sofa, etc. every other week!

I never thought of doors and baseboards. I sweep and mopunder sofas every day. I have 5 kids that like to put stuff under them lol. I use to think i was an clean freak, but now im thinking im not as clean as i should be lol.

Carla, were do you find the energy to clean all these things all the time.Oris easier for you cause your kids are older then mine lol

paula

rinne Apprentice
rinne
Posted

Thanks for the wahoos. :)

Rinne,

Im glad things are going so well for you. How exciting to sell your first rinne bar, did you frame the money you got from it or an pic of the person that bought it.

.....

Thanks Paula, no I didn't but perhaps I should have, the first dollars of the millions I expect to make. :lol: A friend bought it and pronounced it awesome so I could always take a photo later.

Okay, now I am really gone. :)

CarlaB Enthusiast
CarlaB
Posted

We have a division of labor. :D Each child is in charge of a room. I have a duster with a long handle so each of them can reach above the doors for their respective room. I check each room. I'll send them back if something is still dirty on cleaning day. I clean parts of the room the youngest is in charge of.

That leaves me with the kitchen. I stand on a tall stool with the duster to get the tops of the cabinets .... sometimes on the counters. I actually do the kitchen weekly (but not hte tops of the cabinets). The kids have to thoroughly clean their "room" every other week, but have to keep it picked up (trash, etc.) all the time. On the off week their bedrooms get the thorough cleaning.

When I was really ill, I either had to beg someone else to do the kitchen or it just didn't get done.

My bedroom would sometimes go weeks without getting cleaned, then I'd have kids and hubby do it. But now, I can always muster up the energy to clean it.

So, basically, everything gets really cleaned every other week, and a light cleaning on the off week.

I could not keep up with this by myself, though I used to before I was ill. Except the kids' rooms, they've always been in charge of their own rooms.

ShadowSwallow Newbie
ShadowSwallow
Posted

I just sent out the email. Just PM me if you want it and didn't get it. :)

dlp252 Apprentice
dlp252
Posted
just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

:o:o:o AMAZING!!!! :D

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

Yeah, I do, but not necessarily with food...it CAN be with food, but I can also just be sitting here and not be able to swallow.

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

I get the terrible hunger pain thing...usually happens in the middle of the night for me though. But yeah, I can be completely fine and then all of a sudden it's like extreme hunger. That's one reason why I eat so frequently.

Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I know someone here has talked about ketotifen, but I can't remember now who it is.

I sold my first rinne bar from my restaurant yesterday, wahoo!!! I am working seven days a week, six hours a day behind the grill, doing all the cooking, shopping and cleaning. I need help! Let me be specific, I need good help that shows up and pays attention. :lol:

YAY!!!!!! HOW exciting!!!!

Im just reading along. Im kinda in an weird place right now. I have no idea why tho. Maybe once I get my hair test back, I can think more clearly.

I was there a few weeks ago. Very strange place indeed!

I just sent out the email. Just PM me if you want it and didn't get it. :)

I'll PM you my email address.

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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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