Omg...i Might Be On To Something

[CarlaB]

Jin, I agree with Rachel, Enterolab will not tell you anything you don't already know by dietary response. If you wanted to get tested for something, get the Western Blots for under $200. I would do that over the gene test since you're already gluten-free.

I am having a horrible brain herx. I am practically incoherent and disoriented. I'm having trouble typing. Morgan and I went for a long walk and she was worried I would fall over. If you read Tincup's description of a herx on LN, it's very accurate. I had a little Lyme rage, too. That's why Morgan took me for a walk.

Maybe I won't get the fatigue and weakness this time ... if I do it should start tomorrow.

Our priest has just been diagnosed with ALS. I sent the music director this article Open Original Shared Link. I don't know his email address ... and I don't know him too well personally. She is the one who told me, so I sent it to her. I just mentioned that it should be part of his differential diagnosis.

[AndreaB]

Read the mold stuff with interest. 3 of us that we know of have the dq2 gene. I still need to have Seth gene tested. Amazingly, Talitha is not dq2 and she has the most intolerances, which could be molds although I would think she'd be reactive to all grains and she can eat rice and corn (corn flakes that is).

I've been reading in between eating.....trying to catch up. I was three pages behind.

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!

I hope your eye is doing better. That sounds miserable.

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....

Happy, clean puppies. Now that's nice.

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.

Quite a variety of people there. I'm so glad you like your doctor. That seems to be half the battle. It's nice to know the staff is so great too.

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!

WooHoo!!!!

Jin,

Hope your eye heals quickly. I agree with Rachel on the enterolab testing. We had the whole thing done but the gene test is the most informative.

[AndreaB]

I am having a horrible brain herx. I am practically incoherent and disoriented. I'm having trouble typing. Morgan and I went for a long walk and she was worried I would fall over. If you read Tincup's description of a herx on LN, it's very accurate. I had a little Lyme rage, too. That's why Morgan took me for a walk.

Maybe I won't get the fatigue and weakness this time ... if I do it should start tomorrow.

Our priest has just been diagnosed with ALS. I sent the music director this article Open Original Shared Link. I don't know his email address ... and I don't know him too well personally. She is the one who told me, so I sent it to her. I just mentioned that it should be part of his differential diagnosis.

I'm glad Morgan is there to watch after you and that the children understand that these rages are from the lyme. I hope this herx clears quickly for you or at least is/gets over the worst of it.

Hopefully your priest will be willing to look into lyme testing. I didn't look at the reference but I'm assuming that is in there. Mitch's dad died of ALS. We are wondering if he actually had lyme. He diet 21 years ago I think.

[Rachel--24]

Laura,

Thanks for your informative post!!

I feel the same as you about contacting my previous Dr.'s.

The test results wouldnt change anything for me either but OMG...I would *love* to send them to the infectious disease idiot that ridiculed me a couple years ago. I was practically suicidal after seeing him....I had no hope left.

I had biopsies for Celiac and also biopsies were taken from my stomach because they were looking for H. Pylori. It would be great if these samples were still available. Guess theres only one way to find out.

I'm so gald you've found this great LLMD!! I think it makes a difference to actually not feel so "different" or like an outsider. I actually feel pretty normal when I'm at the Dr.'s or at BioSET.

I feel very comfortable...I havent met alot of people as I'm usually one of the last patients of the day due to my work schedule. When I went earlier once it was very crowded....and lots of people getting IV's....but I was only there for a quick blood draw at the nurses station. I LOVE all the nurses and the staff. Its also nice that they remember me and call me by name without having to always ask for my info.

Eventually if I get on the IV's for chelation I'll be sitting there long enough to meet people.

Its wierd but when I go to the Dr.'s my spirits are always soaring...so opposite of what I felt before having these Dr.'s....which was total fear, confusion, desperation, anger, disappointment, etc.

I feel happy and comfortable now and I'm glad you have that same experience.

Its awesome that you've developed these friendships with people who you can look at and see yourself...and not feel so "disconnected" from the world. It made me really happy to read that...I actually got kind of teary. I know you're gonna be ok after all is said and done...and now you've got all these new people to give you strength when things get rough.

I'm gonna find out if my biopsies are still around and then talk to my LLMD about it. THANX!!

[CarlaB]

Humorous description of a herx ... OMGosh, I can't believe Lymenet comes up as Lame Advertisement!!!!

Here's the website, but I have to leave spaces .... Open Original Shared Link .org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=053778

[Rachel--24]

Read the mold stuff with interest. 3 of us that we know of have the dq2 gene. I still need to have Seth gene tested. Amazingly, Talitha is not dq2 and she has the most intolerances, which could be molds although I would think she'd be reactive to all grains and she can eat rice and corn (corn flakes that is).

Andrea...I think it would be only chronically ill people with BIG mold problems who would be reacting to all grains and all moldy foods. Even if T were sensitive to molds she is nowhere near this level of sensitivity.

I would think if she were sensitive at all it would only be the foods with VERY high mold content.

DQ2 is just one genotype involved in susceptibility to mold toxins....its not the only gene.

Actually Scotts last article in the Public Health Alert was about biotoxins and genetic susceptibility to certain toxins, etc. It has to do with genes and detoxification...the pathways needed to detox these things.

Scott told me I am likely very susceptible to mold toxins but not so much Lyme toxins...which could explain why it doesnt appear to be as severe a problem and why I didnt get sick from it. I didnt get sick until the other problems "piggybacked" Lyme.

I'm also really susceptible to mercury....so I think if I can get alot of this stuff to start detoxing my body can cope with Lyme pretty well.

I wish I could have read Scotts article but my computer (and my moms) wont read PDF's and even though there was a stack of the newspapers at my Dr.'s office I didnt want to take one.

I can read newspapers but the inks they use in the Public Health Alert really bother me so I didnt even wanna have it in my car. When I go back tomorrow I hope they still have some papers left. I'll get one and read it outside and then bring it back.

I think the article is probably really informative.

[happygirl]

Rach,

You are more than welcome. Considering how much you postthat is helpful, I'm happy that I can make a contribution. I have the letter from MDL that they sent back when we sent in the wrong type of sample. I'll get it tomorrow and post specifically what type of samples they can take, so that when you call, you can ask to make sure it fits the guidelines. I believe its the small intestine sample that my LLMD was most interested in having tested.

L

[jerseyangel]

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.

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

This is all great info--especially about the DQ2, which I have. Again, wow.

In other news, I now have a busted vessel in my eye!

Sorry about this and about the unpleasantness with your dad. I've had the broken blood vessel, and it's true--it looks a LOT worse than it really is. You take care

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!

That is fabulous news!!!!

Our priest has just been diagnosed with ALS.

I'm so sorry to hear this.

[Rachel--24]

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.

Alternative health arena....

I dunno about "crusader" but I'll definately try to put all of this scientificness to good use.

I still dont know how I retain the info. but I think my brain must be jam-packed by now....dunno how I can fit anything more in there!

Theres no room for less significant stuff...like thinking of bill-paying.

[Rachel--24]

I have the letter from MDL that they sent back when we sent in the wrong type of sample. I'll get it tomorrow and post specifically what type of samples they can take, so that when you call, you can ask to make sure it fits the guidelines. I believe its the small intestine sample that my LLMD was most interested in having tested.

Thanks Laura!!

Anything you can find out would be helpful I'm sure...especially since brainfog inevitably takes over whenever I'm making phone calls.

I have to write everything down so as not to forget why I'm calling.

The info. you've posted already is very helpful to me.

[Rachel--24]

This is all great info--especially about the DQ2, which I have. Again, wow.

Patti...I hope this info. can help you somehow.

Also...if its true that you're having symptoms caused by mold...and you're NOT living in a home where there is a problem with toxic mold...then I would look into Lyme since it could lead to your sensitivity....even if you're not sick from the Lyme itself.

The infections (Lyme and co-infections) impair the livers ability to detoxify... so other toxins can eventually overwhelm your body...if you were genetically susceptible to mold it could begin to cause problems...but the underlying reason would be whatever is causing your body to be overwhelmed in the first place.

If you were living in an environment which was toxic from mold and you were susceptible...that would be enough to cause the problem without having infections.

My Dr. grilled me about this in the beginning but I know I didnt get sick from my home because my symptoms dont worsen when I'm here the way they did when I went to my friends "moldy house".

I put alot of thought into it and I've even searched my home...even though I know you cant always *see* it....still I dont get worse in any room or area of my house. I feel the same at my moms except for there is more dust and animal dander at my house.

I'm original owner and watched the house get built so I know there was no previous water damage that I'm not aware of.

I wasnt sick until the dental work but still my Dr. must have asked me 100 times about mold. TheDave was like...."OMG...When is he gonna stop asking about mold!!!"

He did say illness from mold is very common.

[AndreaB]

Its wierd but when I go to the Dr.'s my spirits are always soaring...so opposite of what I felt before having these Dr.'s....which was total fear, confusion, desperation, anger, disappointment, etc.

I feel happy and comfortable now and I'm glad you have that same experience.

I'm glad you and Donna have a good doctor too. It's amazing what a helpful doctor can do to our spirits.....as well as a knowlegable one.

Actually Scotts last article in the Public Health Alert was about biotoxins and genetic susceptibility to certain toxins, etc. It has to do with genes and detoxification...the pathways needed to detox these things.

Are those available on his website?

[jerseyangel]

Rachel--I don't doubt that--I would think it's almost impossible to completely eliminate molds.

I don't think my house has a toxic mold problem--except for small spots in the shower, I've never seen any other evidence of it--although like you say, I wouldn't be able to always see it. We waited over a year to have the basement finished to make sure it was going to stay dry. We probably should have a de-humidifer down there though....

I'm not going to worry too much about the house right now--there's a pretty decent chance we may move in the near future.

I was telling Mark about this--the symptoms matching, and the DQ2 connection. He gave me that look like OMG, she's on to something ELSE But he's really very supportive

[Rachel--24]

Ok...the wind is dying down....but of course now there is no more sun.

The next few days should be pretty boring...the people I talk to the most are all gonna be in Tahoe for Safeway business.

I wanna be in Tahoe too!!! Except I'd be doing more fun stuff....not sitting in boring meetings.

Yeah....I'd probably be out doing something exciting...like getting bit by ticks.

I need help with my computer.

Because of scrapbooking I have hundreds of pics scanned into my computer. The files are LARGE....I only resize what I wanna use for an avatar. The only small files are what I've resized for using as an avatar or personal pic...everything else is BIG.

My computer runs painfully slow. Does anyone know if I were to delete or resize all these pics to smaller file sizes...will my computer run faster??

Also I always get a message that windows is running low on "virtual memory" and its always doing stuff to try to accomadate this problem. I dont think my pics have anything to do with virtual memory though. What does it all mean???

Should I bother spending time dealing with my pictures....anyone think it will help. My computer doesnt have a ton of memory to begin with.

[AndreaB]

I was telling Mark about this--the symptoms matching, and the DQ2 connection. He gave me that look like OMG, she's on to something ELSE But he's really very supportive

I'm glad he's supportive though. If you do move I hope you'll update as well as finding a house you really like to move into.

[AndreaB]

Yeah....I'd probably be out doing something exciting...like getting bit by ticks.

That sounds real exciting Rachel.

Also I always get a message that windows is running low on "virtual memory" and its always doing stuff to try to accomadate this problem. I dont think my pics have anything to do with virtual memory though. What does it all mean???

I believe virtual memory is used up by programs that are running, but I'm not 100% sure on that.

[Rachel--24]

Are those available on his website?

All of his articles and electronic newsletters are available on his site. You have to have that Adobe reader thing which views PDF's to see them though. If you dont have I think you can download it from his site....I just never bothered because of my computer running so slow. I think it might take all weekend.

[jerseyangel]

Rachel--

I'm not sure about virtual memory, but when I was a sales assistant I worked from home a lot. I used a program with literally thousands of contacts. When I would go through and purge, the computer would run quicker--at least for a while.

So, I think that if you lighten up what you have stored, your machine should run faster.

That's about as technical as I get

It's funny you said "no sun"--it's almost 11:30 here

[Rachel--24]

I was telling Mark about this--the symptoms matching, and the DQ2 connection. He gave me that look like OMG, she's on to something ELSE But he's really very supportive

Patti....I'm sooooo familiar with "the look".

Everyone around me is really supportive too....but heck look at how many things I've brought up just during the length of this thread!!

Yup...even the title says it...."OMG...I might be on to something!!!!"

[jerseyangel]

I'm glad he's supportive though. If you do move I hope you'll update as well as finding a house you really like to move into.

Thanks! I'll definately keep you posted

[AndreaB]

It's funny you said "no sun"--it's almost 11:30 here

Hey, that's right! What are you still doing up? You starting to keep my hours? I'm usually up til 12-12:30. I need to figure out a way to get to bed earlier.

[jerseyangel]

Hey, that's right! What are you still doing up? You starting to keep my hours? I'm usually up til 12-12:30. I need to figure out a way to get to bed earlier.

Yea--it's past my bedtime!

[Rachel--24]

So, I think that if you lighten up what you have stored, your machine should run faster.

Thanks Patti. I think I'll try it....it cant hurt.

I'll do it one folder at a time.

Oh yeah....I'm pretty sure you're right about the virtual memory thing Andrea!! Thing is there is not alot of programs running (that I know of) when this message is coming up. Do other things count as running programs?? I have 3 different printers (cuz of scrapbooking) and my scanner.....they all come on when my computer comes on. Could this count as virtual memory??

[Rachel--24]

Donna....GREAT NEWS about finally getting your insuarance checks for BioSET!!

Its always a happy occasion opening up reinbursements!

Yesterday I opened a letter from Dr. Amy.

Actually I kind of ripped it open in a frenzy...

I thought it might be letting me know when shes coming back in June....although I'm sure I'll hear from BioSET first when they start putting the appt. schedule together.

Anyways she sent me a check.

I guess my insurance company sent her my reinbursement so she wrote me a check. I dont know why my insurance always does this! They do it with BioSET too...they send Anna my checks and then Anna just credits my account. I still have credit in there from my last payment.

I dont know why I got another insurance check sent to Dr. Amy though...I'm pretty sure I already got reimbursed for that.

I got another check last week for that same amount so I gotta have my mom look into that. She handles all my insurance stuff and deposits my checks for me.

I love my mom...she's the best!

[Rachel--24]

For Patti or anyone else interested...

Heres the link to Scotts page about mold, lyme and genotypes...susceptibitlity and all that stuff that I didnt pay alot of attention to before.

Open Original Shared Link

In Lyme disease and certainly mold illnesses, the biotoxins themselves are a major component of the resulting symptom picture. Most Lyme-literate doctors will agree that the toxins which are produced from Lyme disease are likely the reason that most people continue to feel quite ill.

Through what would appear to be an inefficient human design, these toxins are excreted by the gallbladder and then almost entirely reabsorbed by the remainder of the digestive system. They continue to circulate in the body with no mechanism for removal.