Omg...i Might Be On To Something

[Rachel--24]

Well I took the VitB-12 three times now and I reacted every time. I'm suppossed to take 10 drops 2 times a day. Last night I had an obvious reaction so right now I took 5 drops and still had an obvious reaction. Of course the drops arent just B-12. They have alcohol, stevia extract, flavoring and glycerin.

I dont wannna take it anymore.....it burns my mouth and makes my face swell up.

I dont get reactions from my food anymore because I'm only eating my 5 safe foods.....so I'm not happy when I DO get a reaction from something I'm taking. I dont even know what the point of trying to take supplements is when they all have other stuff in them that I cant tolerate.

[jerseyangel]

Rachel,

I wouldn't take any more of that B12 until you talk to the person who prescribed it to you. Maybe it's just too soon?

[dlp252]

Donna,

YAY about getting more amalgams out.

Ummmm....hopefully you are not still lopsided.

I wonder if its the same Dr. Adams that removed mine?? I'm still baffled by the whole retirement letter I recieved. I mean...I was still eating gluten and everything else at the time but I dont think I was totally delusional.

Is it the guy in the pic on his webpage? An older guy who maybe *looks* like he might be able to retire??

Ok...I gotta ask about my new times when I go tomorrow.

Yeah....she did say to wait a week until I ate a whole egg. I dunno what happened ....I think the egg was too small.

Yep, it's the guy in the picture on the website. He looks like he could retire if he wanted to. Maybe he is only semi-retired because he doesn't work every day...maybe that's what the letter said, or maybe he did retire but decided he liked what he does too much. He wanted to tell a "sick" joke yesterday and both his assistant and I said no.

IN honor of Rinne: I am wearing lime green today and guess what was on my desk when I got here this morning? The LIME green tote bag I ordered, lol. I am truly a laughing lime lady even though I am not a laughing Lyme lady.

Yah, I agree. I mean who can have just one egg as far as I'm concerned.

Who could have HALF an egg...that's just wrong.

Well I took the VitB-12 three times now and I reacted every time. I'm suppossed to take 10 drops 2 times a day. Last night I had an obvious reaction so right now I took 5 drops and still had an obvious reaction. Of course the drops arent just B-12. They have alcohol, stevia extract, flavoring and glycerin.

I dont wannna take it anymore.....it burns my mouth and makes my face swell up.

I dont get reactions from my food anymore because I'm only eating my 5 safe foods.....so I'm not happy when I DO get a reaction from something I'm taking. I dont even know what the point of trying to take supplements is when they all have other stuff in them that I cant tolerate.

Yep, Dr. Vikki has me on three of the liquid supplements and every one of them has alcohol, glycerin and one has vanilla flavoring. All together I have to take 23 drops twice a day!! And, it DOES burn! I put a tiny bit of water in first, then drop the drops which doesn't hurt as bad.

I've been reacting to something since yesterday...I was in the bathroom constantly yesterday and had lots of gas too...it's one of the supplements I'm sure, just don't know which one, but I think it's the calcium because it DOESN'T ONLY HAVE CALCIUM. Grrr, lol! I tried introducing them slowing, but there were a couple I had to start on the same day as others.

[Mtndog]

Bev,

Like your new pic. Why are you hiding behind your hubby?

thanks Andrea- not hiding, HUGGING!

[rinne]

IN honor of Rinne: I am wearing lime green today and guess what was on my desk when I got here this morning? The LIME green tote bag I ordered, lol. I am truly a laughing lime lady even though I am not a laughing Lyme lady.

Now I want a lime green tote bag.

[DingoGirl]

Alos, Susie Q, I just used a random number as an example. It's just that statistics get thrown around so often that people forget that in most cases, they're not numbers. They are people with lives and families and friends. I hope I didn't upset you.

oh Silly Bev, of COURSE you didnt' upset me! I just thought, that's a really low number and I don't know the statistics, but had read it not so long ago because of my friend's daughter, and it was shockingly high. Not to worry.

Adorable picture, BTW.

Well I took the VitB-12 three times now and I reacted every time. I'm suppossed to take 10 drops 2 times a day. Last night I had an obvious reaction so right now I took 5 drops and still had an obvious reaction. Of course the drops arent just B-12. They have alcohol, stevia extract, flavoring and glycerin.

I dont wannna take it anymore.....it burns my mouth and makes my face swell up.

I dont get reactions from my food anymore because I'm only eating my 5 safe foods.....so I'm not happy when I DO get a reaction from something I'm taking. I dont even know what the point of trying to take supplements is when they all have other stuff in them that I cant tolerate.

Rachel....I take a sub-lingual B12 from Trader Joe's.....I wonder if something like that would be acceptable, the only other ingredients are lactose and acacia gum.

Donna.....hope you feel better, miss Lyme Lady.

[happygirl]

just wanted to say hi ladies....

[Rachel--24]

have we heard from miamia? she was supposed to get eos results...

Havent heard anything....do the results come back that quickly? When will you get yours?

[AndreaB]

Rachel,

Was it the bioset lady that had you start taking b12? Is there a different form like Susan mentioned that might work?

I'm also curious about the egg. When do you need to have another one? I'm interested in how this works and whether you can tolerate more than you used to but still have to be careful about limits. Seems to me that it would take time to be able to jump in with both feet eating more of food groups (such as sulfur foods). Is treatment to get you to the point of eating some without reaction then work on clearing some more of the pathway or is it supposed to be cleared all at once?

Laura,

Miamia hasn't checked in today yet.

Donna,

Lime lady.

[Rachel--24]

Yep, Dr. Vikki has me on three of the liquid supplements and every one of them has alcohol, glycerin and one has vanilla flavoring. All together I have to take 23 drops twice a day!! And, it DOES burn! I put a tiny bit of water in first, then drop the drops which doesn't hurt as bad.

Yup....they gave me those drops too...for adrenals. I had a MAJOR reaction the first time I tried it. It wasnt just my mouth burning...it was my whole body....and the swelling, fluid rention, etc. I took them back to HN and requested my money back since I'd already told them I cant tolerate supplements. What...do all these people think I'm just making this up when I'm telling them NO supplements??

[Rachel--24]

Seems to me that it would take time to be able to jump in with both feet eating more of food groups (such as sulfur foods). Is treatment to get you to the point of eating some without reaction then work on clearing some more of the pathway or is it supposed to be cleared all at once?

I can have another egg after a couple days. Now....because of the stupid B-12 ...I will not know whether the egg had an affect on me or not.

Good question...I dont really know. If I've had a bad day at work as far as exposure to perfumes and stuff....by the time I get to my appt. I'm sometimes in a major fog. When I get like that I cant really retain much of what she is saying to me.

I try to ask alot of questions about the treatments but then I forget her answers to most of them...the more complicated her response is....the less I'll understand and the quicker I'll forget it.

So....to answer your question....I forgot.

I take drops everyday to help detox....I think the pathway is suppossed to be cleared. Each treatment session focuses on something different. We already did the pathway treatments so I think that part is over. I'm still not totally sure how it all works.

Supossedly I can take b-vitamins now without my immune system reacting to it....BUT....what about all the other stuff in the supplement?? My immune system is still gonna react to those things...those drops are like 20% alcohol!! My body cannot handle that.

Iwill ask her about this today...I want B-12 that is *just* B-12.....nothing else. Why do they need to color the drops red and add flavor and all that other crap....why cant I just have b-12??

Rachel....I take a sub-lingual B12 from Trader Joe's.....I wonder if something like that would be acceptable, the only other ingredients are lactose and acacia gum.

Thanks Susan,

These sound better than what I've got....plus I obviously dont have a lactose problem...I eat ice cream just fine.

[happygirl]

She had her biopsy last week and was told she would get her results today.

[AndreaB]

I can have another egg after a couple days. Now....because of the stupid B-12 ...I will not know whether the egg had an affect on me or not.

That would be frustrating! I would assume it's the b12 bothering you, but I presume it's possible that reaction could hide a smaller possible reaction from the egg.

My mind is trying to understand all this as well. I don't know that I have the drive to learn everything about it but it would be nice to be able to grasp the basics of how it works. We'll probably not understand unless we want to become bioset trained people ourselves.

[dlp252]

Donna.....hope you feel better, miss Lyme Lady.

Thanks, I do!

Donna,

Lime lady.

Yes, when I get old I shall wear lime!

Yup....they gave me those drops too...for adrenals. I had a MAJOR reaction the first time I tried it. It wasnt just my mouth burning...it was my whole body....and the swelling, fluid rention, etc. I took them back to HN and requested my money back since I'd already told them I cant tolerate supplements. What...do all these people think I'm just making this up when I'm telling them NO supplements??

Yes, if I had burning any place else besides the mouth I'd stop taking them too. I think I reacted to the calcium pills they gave me. I took them Tuesday night and all day yesterday I was in the bathroom...I didn't take them last night and I'm fine today. I'll try them once more in a day or two and then I may ask for my money back on those...ain't none of their supplements cheap, lol.

[Green12]

Hi everybody, been thinking about you all, hope all is well with everyone

Have we heard about Evie yet?

I have been worried about Mia Mia too.

Yay Donna, 2 quadrants down, 2 to go

[AndreaB]

Hi Julie!

right back at you.

No news on Evie yet.

[happygirl]

All this lyme stuff is so fascinating. I feel like Andrea said, I can barely keep up and I'm slow some days, esp lately! Do you lyme ladies dream in green?

brief overview of my procedure:

went to baltimore tuesday and stayed in a hotel, drank the nasty stuff (4 liters, no joke, I wanted to die). Spent most of the hours of 8-11 in the bathroom. Got up and went for my procedure, and everything went smoothly (no traumatic blood draws!). Even talked with the nurses about how great my doc is....they all love him too. He and the anestheologist (sp) came and talked to me, then wheeled me in. Send me off to sleep (which, interestingly, took longer than I thought it would, compared to the "normal" heavy sedation they give for an EGD/colonoscopy). And by longer I mean like maybe 4 seconds longer but it seemed like a lifetime.

I came out of it, and they have you all in a big room.....and wouldn't let my mom back (no one was allowed back for anyone). I was coming out of it, and when my doc came over, I started crying (I think because he was a familiar face)...I just said I wanted my mom! I was very disoriented and in all the freakin' procedures I've had, I've never not been allowed to wake up to Eric (or, this time, my mom) and I didn't like it!

Apparently, my esophagus, small intestine, and colon looked clear (i.e., no Crohn's luckily). He wrote that my stomach showed "moderate widespread mucosal atrophy" which I think is a fancy term for the generic word "gastritis." so i looked up "mucosal atrophy" and "eosinophil" and there are three types of eosinophilic stomach issues, depending on the layer...the first being mucosa. so, who knows. I should hear back hopefully, next week.

the more i have read about eos, the more I learned about flares and periods of remission. Interesting. I'll post more about that later.

I contacted the leader of an eos support group, in AZ, and this was her response:

Also so sorry to hear about your struggles. They sound very familiar. As with many disorders.... symptoms can crossover. However ..if you suspect that you might have an Eosinophilic Disorder there are questiosn that you can ask your doctors to hopefully get to the bottom of it. Actually I just reread your email and see that you should have had your SCOPE today 11/15 ? It is great that your doc took so many biopsies. One common problem in the adult population is that docs don't always take biopsies at all on EGD ...unless they "SEE" something suspicious. This can lead to mis and wrong diagnosis in the case of EGID ....because EGID CAN ONLY BE DXd via biopsies that are read properly by the pathologist. So.... that is a great first step. SECOND...when your doctor calls you with the Biopsy results.....ASK HIM what the Eosinophil Counts were? If he says that there were none....ask if it specifically states that on the Pathology Report? If it does not mention EOSINOPHILS one way or the other...ask for the slides to be RE-READ. My son was MIS_DIAGNOSED 3 times in the first year of getting EE because the biopsy slides WERE NOT READ PROPERLY. We were told there were NO EOS...when infact there had been EOS ALL ALONG and increasing in numbers each scope!!!!!!! Also...get a copy of your Pathology Report and keep that in your Medical Records. You can request that from either your doctor OR from the Hospital Medical Records.

As far as whether EOS will be present because you have been on an elimination diet for so long...that is hard to say? IF YOU DO HAVE EGID......Since you are still having symptoms....my guess would be that then EOS are reacting and would be present in the biopsy. Since you are still so sick and symptomatic you would most likely still be reacting to something that you HAVE been eating in the INCLUSION DIET. The best research that I have is that it takes between 4-12 weeks for the body to "HEAL" from the EOS when you Eliminate all offenders.

You are on the right track in gathering the info needed to get a diagnosis. My suggestion is BE PERSISTANT until you get an answer. SO many kids and adults go mis or un diagnosed with this disease. I hope that you get answers soon and feel free to email or call me anytime. I am really glad that you contacted our support group. It helps to know that you are not the only one going through these types of struggles and talking to others who face the same challenges day in and day out is very helpful. We formed this Support Group 2 years ago and have grown to 27 kids with EGID ranging in age from 6 months to 19 years old. All of the resources that you listed are the sources for info on EGID. Hang in there and let me know what you find out.

I hope that my response helped. It is difficult to contain all there is to share about this disease in an email. But feel free to contact us anytime and I really Pray that these biopsies give you answers and direction.

[DingoGirl]

Laura.....so glad you got that over with !

Just a quick note......um, where is our friend Richard?

[lindalee]

Hi Lime Girls, The Your Health program today had a call in about "ticks". Here it runs a repeat at 2 am if you have a dvr or tivo or can tape it.

If you can't get it or tape it, I took some notes but I'm not as savvy on all this as you all are.

He did say to take extra natural antibotics and immune boosters.

Donna, Hope you are feeling better with those teeth.

Laura, Glad things went well for your procedure.

Judy, Did you find the show? Hope we hear about Evie.

[CarlaB]

Do you remember what kind of natural antibiotics?

[lindalee]

Noni Juice, Oil of Oregano, and Beta Glucan. The last one is expensive but good for real ill people. It has no live yeast. These super charge the antibotics so they work better.

[CarlaB]

Noni Juice, Oil of Oregano, and Beta Glucan. The last one is expensive but good for real ill people. It has no live yeast. These super charge the antibotics so they work better.

Thanks. Any other tips? I wouldn't know how to tape it, if I get the show ... we just got cable for the first time in years so I've had to learn to change the channel recently, don't want to push it!

[AndreaB]

Apparently, my esophagus, small intestine, and colon looked clear (i.e., no Crohn's luckily). He wrote that my stomach showed "moderate widespread mucosal atrophy" which I think is a fancy term for the generic word "gastritis." so i looked up "mucosal atrophy" and "eosinophil" and there are three types of eosinophilic stomach issues, depending on the layer...the first being mucosa. so, who knows. I should hear back hopefully, next week.

Hm, sounds interesting. So you may have eos of the stomach. Am I reading correctly that this would be the first layer......so will hopefully heal faster?

That stinks that they wouldn't let your mom in. I'm sure they have their reasons but sheesh.

[CarlaB]

I just Googled beta glucan ... apparently it's from wheat, oat and barley along with some other things ... doesn't sound gluten-free, but I bet those other two you mentioned are.

[AndreaB]

Miamia,

I see you. Did you get your results today?