Omg...i Might Be On To Something

[dlp252]

and another thing...if you look at all the processed gluten-free snacks, bread, cereals, etc.....they're all sweetened with grape juice, pear juice, honey....they have all this moldy stuff like raisins, nuts, etc.

Plus they dont have all the preservatives....I remember at the beginning of this thread alot of saying we feel even worse eating the gluten-free stuff. I think this could be why.

gluten-free stuff would harbor more mold.

Its like trading one evil for another.

Yep...I definitely feel MUCH better than I would if I were still eating gobs of that gluten-free product stuff!

[jerseyangel]

Rachel,

I read your accounts with great amazement. I looked like this --seriously. I want to thank you for taking the time type it all out. You suspected mold before, and now it looks like that could be huge for you.....

And....I have every single one of those symptoms. I swear....along with nausea.

Mold--wow. I have been taking a digestive enzyme for the last 3 weeks. I was thinking it was agreeing with me, but just now I couldn't eat dinner--except for a baked potato. I have achy neck, shoulders, my vision is off, I'm cold, and I've been queasy since I woke up. I've been taking 3 capsules a day

I started using the enzyme for gas and indigestion--but it hasn't had any effect on those. I've been "finishing them up". I guess that's the end of those.....

Remember quite a while ago, I stopped all my suppliments because I felt they were making me sick--even though they were definately gluten/soy and dairy free.

For the love of Pete!

[happygirl]

Re: tissue testing for Lyme.

I am in the process of having that done. So Bev, your LLMD is on top of his stuff! The Bells Palsy article is very good.

I just had my Aug/Sept endoscopy samples sent to my doc. When you have it sent, you have to have the PARAFFIN BLOCKS with the samples, not the slides that regular labs analyze. (I learned this, bc the lab set the slides the first time...nothing is simple).

The lab that is doing the testing is MDL. It actually checks for the presence of Lyme bacteria.

[jerseyangel]

And when I said every symptom, it is true. Even though I have no ovaries, I still get the stabbing pain in that area at times.

[dlp252]

Oh Patti - sounds like mold might be a problem for you too!

For the love of Pete is right...there are now THREE police cars across the street...add a paramedic unit and we'd tie the record for the drunk neighbor episodes.

[Rachel--24]

OMGOSH!! It is so windy here...

No kidding!!

Its HEINOUS...it *looks* gorgeous outside except for the fact that it looks like stuff is gonna get uprooted from the ground and start flying around in the air.

I had to turn the music up loud so that I can no longer hear the wind....it was driving me crazy.

I'm not at all surprised a perfectly healthy tree got blown out of the ground.

I'm not too sure how Susan can call this a nice "blustery" spring day.

It gets windier here in Manteca...compared to SJ. A couple years ago I came home and thought someone had vandalized my backyard. My big HEAVY BBQ was on its side in the middle of the lawn....my tablle was on its side...glass shattered into a gazzillion pieces, plants and little trees were uprooted, my heavy "firepit" which is on wheels was also rolled all the way accross the yard...all the chairs were thrown about the yard.

I was soooo upset and then I found out it was from WIND....I'm thinking more like a mini TORNADO went through my yard.

Anyways...it damaged all my stuff which was brand new at the time.

[dlp252]

Re: tissue testing for Lyme.

I am in the process of having that done. So Bev, your LLMD is on top of his stuff! The Bells Palsy article is very good.

I just had my Aug/Sept endoscopy samples sent to my doc. When you have it sent, you have to have the PARAFFIN BLOCKS with the samples, not the slides that regular labs analyze. (I learned this, bc the lab set the slides the first time...nothing is simple).

The lab that is doing the testing is MDL. It actually checks for the presence of Lyme bacteria.

I'm going to keep this in mind and ask my LLMD when I see him on the 15th. I'm almost positive that the blood tests will not show anything. If BioSET didn't pick an immune response then the blood tests probably won't either.

[jerseyangel]

For the love of Pete is right...there are now THREE police cars across the street...add a paramedic unit and we'd tie the record for the drunk neighbor episodes.

Goodness!

We had a windstorm a couple weeks ago--it always scares me. I'm constantly afraid part of the roof is gonna come off or a window will blow in.....

Hope everything is going to be ok out there!

[happygirl]

Open Original Shared Link is the lab. I am actually going to try to find out if they still have my tissue samples from Alabama....if so, I want them tested also---to see how long I potentially have had this.

All this being said, the testing is like a Celiac biopsy: if its positive, its positive...if its negative...doesn't mean you don't have it

Patti, I feel very similar to how you are right now. HUGS

[dlp252]

Never fear the big tree chipper guys are here. I'll definitely be having to close my door in a minute.

Goodness!

We had a windstorm a couple weeks ago--it always scares me. I'm constantly afraid part of the roof is gonna come off or a window will blow in.....

Hope everything is going to be ok out there!

OMGOSH!! I have to call my mom. They live in a mobile home and have been having some work done...the workmen loosened one corner of the roof somehow...I hadn't even thought about that until you posted.

[dlp252]

Tree chipping has begun.

Open Original Shared Link is the lab. I am actually going to try to find out if they still have my tissue samples from Alabama....if so, I want them tested also---to see how long I potentially have had this.

All this being said, the testing is like a Celiac biopsy: if its positive, its positive...if its negative...doesn't mean you don't have it

Wow, thanks for the link! I hope they still have your samples...that would be fantastic!

[Rachel--24]

You suspected mold before, and now it looks like that could be huge for you.....

And....I have every single one of those symptoms. I swear....along with nausea.

Patti my BioSET lady is the one who told me Iim having serious problems with mold....and yeah I'd suspected it before (along with a million other things )....but I guess I never really thought it could be the *main* thing.

Heck...it could be the cause for almost all my reactions!!

I do know I'm reactive to chemicals but I dont eat stuff thats not organic so that pretty much eliminates pesticides or other chemicals as a cause for these ongoing reactions.

I dont eat things with MSG or Aspartame or other things that cause reactions...I eat very "pure" and natural foods....bUT mold occurs naturally.

Oh...I DO have nausea from moldy foods!! I forgot that one on my list.

I have alot of smaller, less bothersome symptoms that I didnt list. My nausea is rarely severe...I also get reflux or burping.

[jerseyangel]

Never fear the big tree chipper guys are here. I'll definitely be having to close my door in a minute.

OMGOSH!! I have to call my mom. They live in a mobile home and have been having some work done...the workmen loosened one corner of the roof somehow...I hadn't even thought about that until you posted.

Hope everything is alright.

[DingoGirl]

I'm not too sure how Susan can call this a nice "blustery" spring day.

me either! it was really cold and blustery this morning, loved it, then went outside and hung in the tree, rather dangerous as my footing lost hold of the ladder, but I was hanging to a big limb...decided I didn't want to take an awful fall to the ground adn end up paralyzed or something. Trimmed as much as I could. Many particles from sawing the branches got in my eyes, and they are swollen and red now.... Face is all puffy and I have to go to a dinner soon. Then had to rake and bundle and stuff what I could into cans....very suddenly the wind calmed, and it turned dramatically warm all of the sudden.....I walked the dogs in the orchard, we were sweating! They trampled through the mud, so both dogs had a bath at once. Now it's quite windy and blustery again.....I do love a windy day, as long as I"m inside!

Donna - - stay inside!

Rachel - - I don't even know what you EAT any more. But as I read through your posts I can't believe what you've uncovered and learned - all the scientificness! - through this journey, and shared with us. Dang, girl, I really do see you heading into some alternative health arena when you're recovered (crusader, maybe? ).....you just know so much, and we've all learned so much through this cozy home, here.

Andrea - you look bee-yootiful in your photo! I don't know what I"m going to do about these painful teeth - - am looking into it - - - definitely if they're pulled, new ones will go in....yes, that will be pricey. Mom is going to help, but I hate to do that. She helps me a lot already. Um, need to instantly find and marry a man wiht excellent dental benefits, and a cabin.

It is nice to have freshly-bathed, non-staring dingos....

[jerseyangel]

Rachel--

How about mold in a shower? I have a few spots that I can't get rid of no matter what I try. Does that type enter into this, or do you have to ingest it?

And I get the reflux to the point where I get hiccups from it. Come to think of it, I've been getting the hiccups more in the last few weeks.

[Rachel--24]

Scott recommended Transfer Factor for me too...I bought some today but haven't decided if I'm going to take it yet. I think that's the one that has colostrum in it and I haven't decided if there is enough casein in there to cause problems or not. Anyway, it tested very well in ART, but Anna hasn't tested it yet.

Dr. Rick had me on Transfer Factor early last year. I actually think I was ok with it but when I started taking Seacure and enzymes along with it I got sick really fast and so I stopped taking everything...including the TF. I was taking TF by itself for a few weeks without a worsening of symptoms though.

If I end up testing well for it in ART I'll get back on it.

[jerseyangel]

Patti, I feel very similar to how you are right now. HUGS

Huggies back! I haven't seen you in a while--how you doing?

[Rachel--24]

Rachel--

How about mold in a shower? I have a few spots that I can't get rid of no matter what I try. Does that type enter into this, or do you have to ingest it?

And I get the reflux to the point where I get hiccups from it. Come to think of it, I've been getting the hiccups more in the last few weeks.

If you're sensitive to molds its pretty much a "universal" thing. I'm sensitive to indoor and outdoor molds as well as the molds in foods.

Every visit my Dr. tells me to stay away from molds and chemicals as much as humanly possible....also wheat, dairy and sugar.

The way its explained to me is that the mold sensitivity could be caused by mercury and/or Lyme due to the resulting candida/fungal overgrowth and/or toxic burden on the body.

OR...a person could get equally sick, develop candida and the same type of toxic illness from living in a home where there is toxic mold....and having chronic exposure.

Its all intertwined and genetically some people are more suscepitble to mold toxins. Also the people with DQ2 Celiac gene are genetically susceptible to mold toxins.

Quite interestingly, the genes for celiac disease/gluten intolerance have a significant overlap with the mold genotypes (e.g., DQ2 accounts for 90% of individuals diagnosed with traditional celiac disease). Thus, many individuals with a mold illness may be initially diagnosed only as having gluten intolerance, yet they never fully recover on a gluten-free diet alone.

Toxic illnesses usually pile up on each other so that its usually more than one thing causing the problem.

For me its not mold which started my problem but I wouldnt get better from Lyme or heavy metals if I continued to expose myself to toxic molds. Some molds are more toxic than others.

The molds release "spores"....those are in the air. If you clean mold you should always wear a mask or something...especially if you're already sick because you end up breathing in those spores and some can be very toxic.

I went to a friends house...he had a BIG mold problem and I got dramatically worse the entire time I was there. I slept on the opposite side of the house from where the mold was and whever I went to the "moldy side" I got worse...very depressed and even started crying!!

He had just moved in and he left shortly after that.

[NoGluGirl]

Dear Rachel and Patti,

I know exactly what you mean with the mold. I am severely sensitive to it. I have all of the symptoms you guys have. I get hiccups with the reflux too! I wondered if anyone else got that!

The nausea is the worst part. It is unbearable. I know how dangerous mold is. A classmate of mine even lost one kidney to being exposed to Aspergillus and Stachybotrys. She was treated by a toxicologist.

She said she is going to send me some info. I do not know if it can tell me anything new, but it is worth a shot! Mold is in everything! You cannot avoid it! My grandfather always said he thought this house made us sick. I think he could be right!

Dear Donna,

If your sleep cycle is messed up like mine, it would explain why healing is so difficult. This is frustrating. I hate it when people just tell me to sleep at normal hours. God knows I have tried. They just do not get it!

Dear Everybody,

In other news, I now have a busted vessel in my eye! This is also called a subconjuctival hemmhorage. The good news is, they are not dangerous. The bad news is, they look terrible! It hurts some as well.

Also, my father lit into me yet again, this time about the pots and pans. He says they need to be moved, because they should not be on the oven while I am cooking. They are not my pans! Then, he stuck something inside one of the few good pans I have, and now I am scared to use it. Plus, he made me wait to cook, although I have hardly eaten all day, because he wanted a pot pie.

He has already eaten more than I do in a day! It is infuriating! I told him not to put that in the microwave while the oven was on. It always blows the circuit. He said it was the heat that blew the circuit, not the other. I told him that was not the heat. Naturally, he ignored me.

Then, not even a minute later, the circuit blew. I told "God" to go down and flip the switch back on. As you know, my dad is the expert on everything. There is no way I could have Lyme or Celiac, he is so sure. He complained about the cost of testing and it does not seem to don on him how important getting the entire panel from Enterolab is. I understand the low on money part. He is just a royal PITA!

Sincerely,

NoGluGirl

[Rachel--24]

Open Original Shared Link is the lab. I am actually going to try to find out if they still have my tissue samples from Alabama....if so, I want them tested also---to see how long I potentially have had this.

All this being said, the testing is like a Celiac biopsy: if its positive, its positive...if its negative...doesn't mean you don't have it

Laura...this is all very interesting. Thanks for posting the lab.

I really wouldnt wanna do another Endoscopy because of the fact that like you said....if its negative you still dont have an answer. Do they usually keep tissue samples and are they still "good" for checking if Lyme is present??

My biopsy was about a year and a half ago.

I'm pretty much convinced Lyme is there based on the other test results and my positive IFA from Igenix but if they ever wanted to start strong ABX on me....I might want more proof.

I dont know what will happen after addressing the heavy metals or when I start to improve....they may want to then use abx for Lyme...or they may feel I'm ok with what I'm on now. I dont know how aggressively I'll end up needing to treat Lyme but for now abx is not an option.

Its good to know there are other testing options besides bloodwork in case I'm ever not satisfied with the tests that I've had thus far. I would still like to actually *see* the bacteria itself.

I still have my test kit (urine) for the bacteria itself...and its DNA. Like with the biopsy if its positive...its POSITIVE...however, the rate for false negatives is extremely high in this test. Its like only 20% sensitive....which is why I havent bothered taking it.

Do you know what the percentage is on the biopsy?? With the urine test its very difficult to actually locate the bacteria...is it the same with the biopsy??

[happygirl]

Laura...this is all very interesting. Thanks for posting the lab.

I really wouldnt wanna do another Endoscopy because of the fact that like you said....if its negative you still dont have an answer. Do they usually keep tissue samples and are they still "good" for checking if Lyme is present??

My biopsy was about a year and a half ago.

I'm pretty much convinced Lyme is there based on the other test results and my positive IFA from Igenix but if they ever wanted to start strong ABX on me....I might want more proof.

I dont know what will happen after addressing the heavy metals or when I start to improve....they may want to then use abx for Lyme...or they may feel I'm ok with what I'm on now. I dont know how aggressively I'll end up needing to treat Lyme but for now abx is not an option.

Its good to know there are other testing options besides bloodwork in case I'm ever not satisfied with the tests that I've had thus far. I would still like to actually *see* the bacteria is there.

I still have my test kit for the bacteria itself...and its DNA. Like with the biopsy if its positive...its POSITIVE...however, the rate for false negatives is extremely high in this test. Its like only 20% sensitive....which is why I havent bothered taking it.

Do you know what the percentage is on the biopsy?? With the urine test its very difficult to actually locate the bacteria...is it the same with the biopsy??

Rachel,

To my knowledge, they usually don't schedule a specific procedure to take a biopsy for Lyme, but if its available, many doctors ask for it. This goes for if you have an organ removed (gallbladder, tonsils, etc)---they will ask to keep it and then send it off for testing.

Also, I don't know how long they keep samples. My guess is at least a year. This sample of mine that I'm using is 9 months old. From what I know, here is what happens---your doctor takes multiple biopsies. They are sent off the the pathology dept for analysis. They slice off small parts of the samples and put them on glass slides for analysis. The remaining sample parts are "stored" in some way....often, in a paraffin block. MDL is "the" lab for this testing. I had read about it and suggested it to my LLMD since I knew I had samples floating out there . What I would recommend doing is finding your records that includes your biopsy report. Mine actually had the address of the pathology dept and a phone number. It had my sample # on it. I called, and they were able to quickly locate it since I had my record number, etc. There was obviously a delay, since they sent the slides, not the paraffin block.

I am assuming that every place has a different "period" of time for keeping samples. My first biopsy samples were Aug 2004, and even though I swore I would never ever contact any of my doctors from then again , I think I'm going to call the pathology dept to find out if they still have my samples.

I don't know anything about percentages, etc. I do personally know of two (at least) Lyme patients that I have gotten to know at my LLMDs that have had "something" removed, (gallbladder, tonsils, etc) that have tested positive. MDL is also one of the recommended labs for LD testing, along with Igenex. I just had bloodwork done that was sent to MDL for HHV6.

For me, it won't really change anything, except it will give me some vindication and proof that I can go back to my many doctors and say f. u.

It takes about 2 weeks to get the results, I believe. Once you send your samples in and they do the testing, the samples are "ruined" for other testing because of the process. (I asked...I ask everything). Worst comes to worst, I still have my biopsy samples from November...but I don't want to touch those unless absolutely necessary...those are my "last" set.

Did I mention that I love my doc and the patients there? In some ways it is so heartbreaking. On the other hand, I see all kinds of people who look just like me and sound just like me. Eric and I have become friends with many of the patients there...a local pastor, a 16 year old and her family, a grandmother and her husband, another 20 something, a Marine, ....moms, dads, husbands, wives, kids, etc .... the list goes on. We are all there regularly for our IVs, so we all know each other very well. If it weren't for them and the caring staff (esp the urses), I swear, I would have given up some days. What amazes me is the amount of people there who have food issues.....I've met 2 official Celiacs, and a few others who have gluten problems. Go figure.

[Rachel--24]

He complained about the cost of testing and it does not seem to don on him how important getting the entire panel from Enterolab is. I understand the low on money part. He is just a royal PITA!

Jin,

I know how badly you want the Enterolab tests but honestly I dont think they will change your situation much. I had the full panel and the results didnt have any drastic change on anything...it didnt help me any more than any of the other food sensitivity testing that I had done.

If I was gonna do it over I would have only gotten the gene testing since its the only thing that has given me useful information as far as whether or not I'm genetically susceptible to Celiac.

Since you arent working and your parents arent willing to pay for the test and there is limited finances...why not just eliminate those foods and then challenge them??

The test is only gonna tell you if you're reactive to gluten...which you already know you are.

It can tell you if you have malabsorption...but still you wont know what *causes* the malabsorption. I had very high malabsorption but it didnt resolve gluten-free...it looks like for me MOLD causes it.

They can also tests for soy, eggs, casein and yeast but you could just as easily eliminate these foods and challenge them to determine whether or not they affect you...and you can do it for FREE.

Afterall your bodies reaction is the best test of all!

The test wont tell you whether or not you have Celiac Disease.

[dlp252]

Hope everything is alright.

I think all is well, phew!

It is nice to have freshly-bathed, non-staring dingos....

I love those dingos! Wow, hope your eyes get better soon!

How about mold in a shower? I have a few spots that I can't get rid of no matter what I try. Does that type enter into this, or do you have to ingest it?

And I get the reflux to the point where I get hiccups from it. Come to think of it, I've been getting the hiccups more in the last few weeks.

According to BioSET I am reactive to 99% of the outdoor molds...those are the spores floating around. I'm reactive to at least 3/4 of the indoor molds. I was reactive to about 1/4 to 1/2 of the food molds. I go sooo very sick a few weeks ago from just SPRAYING the mold in my shower...pretty sure it was because of all the spores released and the stupid toxins they emit as they were in their death throws.

According to the skin scratch allergy testing I had done I'm very reactive to molds...so I get it from everywhere...it definitely doesn't just have to be ingested.

It also means I should be very careful about ingesting because mold really seems to be cross-reactive. I'm not as careful as I should be.

Dr. Rick had me on Transfer Factor early last year. I actually think I was ok with it but when I started taking Seacure and enzymes along with it I got sick really fast and so I stopped taking everything...including the TF. I was taking TF by itself for a few weeks without a worsening of symptoms though.

If I end up testing well for it in ART I'll get back on it.

Oh good, this is encouraging!

Toxic illnesses usually pile up on each other so that its usually more than one thing causing the problem.

Yeah, I don't know what caused what, and my symptoms are so intertwined I can't really tell what is causing what...

If your sleep cycle is messed up like mine, it would explain why healing is so difficult. This is frustrating. I hate it when people just tell me to sleep at normal hours. God knows I have tried. They just do not get it!

WOW, you eye sounds awful! I'm glad it doesn't hurt. No, they don't get it, lol. I have a friend who every time I say I didn't sleep, she tells me to take a nap--she can lay down and take a nap for 3 hours and then go to bed at 7 and sleep straight through til the next morning. I can't get mad at her though...she just doesn't understand.

Its good to know there are other testing options besides bloodwork in case I'm ever not satisfied with the tests that I've had thus far. I would still like to actually *see* the bacteria itself.

I'm sort of feeling this way, if only just so I could have some kind of "proof" to show naysayer doctors who may question any treatment I may have. Still, personally, I think I'll be satisfied for my own self with just a weak positive on any of the lyme specific bands, lol. It just would be really nice to have actual visual proof of the existance of the spirochetes in my body.

My biopsies were only about 10 months ago...I wonder if I could still get the samples. Hum, I have to decide how much I want to pursue this.

[dlp252]

OMGosh!!! I'm so excited...I just opened my mail and got two very nice checks from my insurance company reimbursing me for my BioSET treatments for January and February!!!! This is such an answer to prayer!!! I think I also submitted March, so I should be getting something back for that too. What a relief!

[happygirl]

Donna, that is WONDERFUL news!!!!!!!!!!