Omg...i Might Be On To Something

[happygirl]

x

[AndreaB]

anyone heard from our sweet miamia? I'm assuming she didn't get her results on Friday...

I've seen her on reading at times, but she hasn't posted.

[DingoGirl]

I love numbers and if I could balance all your guys's checkbooks I'd be in my element.

balance a checkbook? what is that? OMG I seriously haven't balanced it in years. I just go to my online statement all the time and look to see what's cleared and what's left. Um, should I be balancing it? isn't that the bank's job?

I thought it was very queenly of you, rather, "people do not panic". And you are our queen.

Queenly indeed

Speaking of the Ohio State/Michigan game, I'm outta here. This will be a great time to run errands!!!!

OMG Bulldogs are still playing today.....forgot to put my voodoo hex on them again..... yup, Rachel's right, I am healing.....I don't even think about them any more and work was so much fun that my mind was quite occupied (I had to draw Vinvent Van Gogh's head on a canvas today, among other things)

I must be one of the few that hates coffee. Ick, yuck, patooey!!!

Andrea....that is because it has to be doctored up wtih plenty of cream (I mean real half-and-half, people) and sugar......yum More like a dessert beverage.

I'm going to need a coffee to process all this scientificness.

or a glass of wine.....so much scientifness today, and I got nothin'!

I would also like to see Beverly get tested.

Yes, and what about Miamia, has she been tested for Lyme?

I leave on December 1, but the cruise leaves on Dec. 2...so in exactly 2 weeks I'll be sipping my water from my balcony looking at the waves.

donna.....OMG....this is heaven. Is this a gluten-free cruise? if not how are you handling it?

gotta eat......

[AndreaB]

balance a checkbook? what is that? OMG I seriously haven't balanced it in years. I just go to my online statement all the time and look to see what's cleared and what's left. Um, should I be balancing it? isn't that the bank's job?

Um, no, they don't balance your checkbook but at least you don't believe if you have checks you have money.

Yes, and what about Miamia, has she been tested for Lyme?

She said she was tested through Igenix before. Maybe we could get her to post her results. She said she's negative.

[DingoGirl]

Um, no, they don't balance your checkbook but at least you don't believe if you have checks you have money.

You mean it's not considered "balancing" when they show you how much money they took out?

[rinne]

I leave on December 1, but the cruise leaves on Dec. 2...so in exactly 2 weeks I'll be sipping my water from my balcony looking at the waves.

That sounds so fabulous.

Yes I was. I would think the salt/c would be much milder than the antibiotic, so I wonder if it would be able to have the same effect.

Andrea....I dont think it works that way because the test isnt actually looking for the bacteria. Its looking for antibodies created by the immune system....the results will depend on the state of the immune system and the amount of antibodies its producing. If the salt/vit c is powerful and having the same affect as antibiotics....if its killing the bacteria......the immune system may start producing more antibodies that will show up in testing. I'm just not sure what affect natural treatments would have on testing. I wonder if there is any info. out there about that??

Interesting questions. I have no answers. My sense is that until I started taking the salt/c I had no fight, no antibodies, and that it is because of the salt/c that there were antibodies on the test at all. When I had the test I had been taking 9 grams of salt and 5 grams of Vitamin C for three weeks. A question for Hoffman.

[AndreaB]

A question for Hoffman.

Now I have one more thing to wait for on Tuesday.

[Rachel--24]

Yes, and what about Miamia, has she been tested for Lyme?

She said she has and is negative. From what you can see with me and Rinne though....a negative isnt always a negative. It depends on how her Dr. interpreted the results. I was hoping she could get the results and post them. The tests arent straightforward so its important to know how to read them and whether or not further testing should be done.

I dont know if miamia has actually ever seen her results.

Oh....MiaMia...do you save all of your lab results? I save everything. Igenix mails copies of the test results to the patient. I got my own copies in the mail before I even saw the Dr. You should have gotten copies of your results sent to you in the mail when you got tested. Did you save them?

[CarlaB]

I meant the same effect for the testing, not a lesser effectiveness as far as treatment. You had mentioned how those on antibiotics had a worse herx.

[miamia]

She said she has and is negative. From what you can see with me and Rinne though....a negative isnt always a negative. It depends on how her Dr. interpreted the results. I was hoping she could get the results and post them. The tests arent straightforward so its important to know how to read them and whether or not further testing should be done.

I dont know if miamia has actually ever seen her results.

Oh....MiaMia...do you save all of your lab results? I save everything. Igenix mails copies of the test results to the patient. I got my own copies in the mail before I even saw the Dr. You should have gotten copies of your results sent to you in the mail when you got tested. Did you save them?

Rachel-

I looked for my results and coulden't find them. I save everything though so it seems strange but after reading everythign you guys have written I definitly want to check them out again.

I did get my results on friday and I don't have eos. I am actually happy about this- as much as I want a diagnosis I don't need one more thing that does not really have a cure.

I started treating the yeast and am just trying to take it really easy. I know that the candida is a major problem for me and I don't think I've ever entirely gotten rid of it. I am working on the diet but its hard becasue I feel like there are so few things I can eat so I am still eating some carbs although trying where I can to cut them out.

I can't believe the julie news that really shocked- not suprised but shocked me. Its so crazy how many of us are discovering that is what we have- although we is not me as of now.

I am just feeling so overwhelmed tight now and sleeping terribly- I just want to fell good even for a day and I swear I can't remember the last time that happened. Sorry to be so down.

Miamia

[AndreaB]

Miamia,

Please don't worry about being down and posting such. We are here for you, but we can only be here if you allow us to be. Understand?

I do hope you can get some quality rest and relax about the test results (Igenix), you'll find them. They'll turn up when you least expect it. I guess another thing would be to see if your doctor has a copy and you can get a copy off that. I wonder if Igenix keeps results at all.

Love and hugs to you. You are doing what you can to maintain your health and the candida treatment is one step.

[rinne]

Miamia, no need to be sorry, this is a good place to vent. Who better understands how hard it is to be ill day after day after day? It's good to know the eos is ruled out.

Sometimes I rent sad movies just so I will cry.

I had a long chat with a friend, who has had Lyme for thirteen years, about my results. She said many people get negative test results but based on the clinical diagnosis proceed with treatment. I'm clear that I have Lyme, the Igenex test shows it.

I also know that it is not my only problem. I don't know which came first, the gluten intolerance or the Lyme but I am clear that the damage is manifesting in my digestive system and that is the way I have to deal with it. Lyme undermines our health but in order to do that it needs our co-operation.

I meant the same effect for the testing, not a lesser effectiveness as far as treatment. You had mentioned how those on antibiotics had a worse herx.

Carla, I am slow today. Yes, I agree although I have heard of people herxing hard on the salt/c I still don't think it is as bad as what I read of people taking antibiotics. It also seems that those who have taken courses of antibiotics have the low CD57 white blood cell count.

[Rachel--24]

Miamia,

No worries....we're here for you. As Andrea says "The light is always on".

This is Rachelville and you can post whatever you feel.

If you're happy about the EOS results.....then so am I.

I agree.....I wouldnt really want to be diagnosed with something that there is no cure for either. I havent read that much about it so wasnt sure if there is some kind of treatment for it or not.

I guess if thats the case....and there is no cure....if I actually had that and they gave me that diagnosis....I might want to punch them!

Oh....sorry....theres that violent side coming out again.

Seriously though...I would never believe I have something that cant be cured. To me cured = feeling good....and I think we ALL can feel healthy again.

At my last BioSET appt. the "new" BioSET lady asked if I had inflammation...I told her I did. She said "Oh.....I wonder if you might have Fibromyalgia?" OMG....she is so lucky she didnt get punched!

I told her in a very firm voice that I DO NOT have Fibromyalgia.

I get really upset about Fibromyalgia because of the fact that the symptoms are *real* yet when they give you this diagnosis....they are telling you that its something you have to live with. Thats total BS....why should all of us be living in pain....we are not in our 90's....although some of us might feel like it on some days. Obviously there is proof right here in this thread that these things dont happen for no good reason...there IS a reason...and it CAN be treated.

Miamia....how is the Diflucin going? Have you started it yet? I'm glad that you're taking it easy....thats always good. I hope you get some symptom relief from treating the candida.

I'm glad that you're gonna take another look at your Igenix results...it could prove to be important....or at least it will ease your mind as far as that goes. Oh yeah....it will ease MY mind too.....please get the results.

I'm feeling kind of like a spaz tonight.

All this energy and nowhere to go.....being allergic to the world kind of sucks.

Oh well....I'll go back downstairs and dance in the kitchen....pretend I'm at a club.

[AndreaB]

I'm glad that you're gonna take another look at your Igenix results...it could prove to be important....or at least it will ease your mind as far as that goes. Oh yeah....it will ease MY mind too.....please get the results.

Yeah, it will ease my mind too.

I'm feeling kind of like a spaz tonight.

All this energy and nowhere to go.....being allergic to the world kind of sucks.

Oh well....I'll go back downstairs and dance in the kitchen....pretend I'm at a club.

You've got all this energy. Go dance, have fun. Kitchen? Doesn't sound like a real good place to me.

[Rachel--24]

You've got all this energy. Go dance, have fun. Kitchen? Doesn't sound like a real good place to me.

It *is* a good place though....I have a stereo in nearly every room....including the kitchen....which also has tile floor.....perfect for dancing on.

[AndreaB]

....I have a stereo in nearly every room....

Do you have a built in stereo system with speakers through the house or an actual stereo in various rooms of the house?

I don't think you ever put up a picture of your puppy. Weren't you going to do that?

Now I'm thinking probably the Lyme was already having an affect on me in subtle ways....I think I was reacting to traces of mold probably still under the car seat.

I prefered to always drive my own car cuz it bothered me that much.

How long ago was this? I don't remember if I commented on this or not.

[rinne]

I'm glad that you're gonna take another look at your Igenix results...it could prove to be important....or at least it will ease your mind as far as that goes. Oh yeah....it will ease MY mind too.....please get the results.

My mind too.

What are you dancing to Rachel?

I puzzle over why people are willing to accept a diagnosis of ill health, as if it just goes with aging. I had people say, well you are getting older and sure but I went from being about 35 energy wise to being 75 with all the aches and pains in a year and a half. I think if anyone suggested Fibro I would just laugh at them, as for anti-depressants, not a chance. My mother, who has all of what I have and more, told the doctor who tried to prescribe them for her, "thanks, but I have enough problems without those". LOL She maintains that every person she knows who has taken them has committed suicide.

As to young people, that just baffles me, the only thing I can think is that they have never been truly well and so they don't even have a reference point of real health to aim for.

[AndreaB]

I puzzle over why people are willing to accept a diagnosis of ill health, as if it just goes with aging. I had people say, well you are getting older and sure but I went from being about 35 energy wise to being 75 with all the aches and pains in a year and a half. I think if anyone suggested Fibro I would just laugh at them, as for anti-depressants, not a chance. My mother, who has all of what I have and more, told the doctor who tried to prescribe them for her, "thanks, but I have enough problems without those". LOL She maintains that every person she knows who has taken them has committed suicide.

As to young people, that just baffles me, the only thing I can think is that they have never been truly well and so they don't even have a reference point of real health to aim for.

Yikes! on the anti-depressants.

I found a reference to epilepsy being helped by the gluten free diet and dogtorj also mentions it so I typed up an email for my pastor's wife. I'm so hoping and praying she'll look into it.

[rinne]

Yikes! on the anti-depressants.

I found a reference to epilepsy being helped by the gluten free diet and dogtorj also mentions it so I typed up an email for my pastor's wife. I'm so hoping and praying she'll look into it.

Yikes for sure! She listed eight people and said she knew of more.

I really hope she pays attention to the information you've sent her. I think it is wonderful to be able to offer help and at the same time know that for some people change is harder than illness.

That is the hard one for me. I think of a friend of mine who is being crippled by arthritis and knows that sugar is harming her and yet she continues to drink four cups of coffee a day and two teaspoons of sugar in each of those cups. I worry about her, she is four years younger than me and in increasingly worse health but she will not look at it, being a nurse doesn't seem to help either. I just know that I have to respect everyone's right to an early death by stupidity. Mine too.

[AndreaB]

I hear you.

My dad will probably be the same way. He has prostate cancer that has traveled. If he were willing to go gluten and dairy free he would probably be able to slow this thing down and maybe even heal enough to start fighting it. Sadly, I don't think he will.

I also need to copy over some of the info you guys gave on lyme possibilities with ms (did you mention fibro too). I know they both can be linked to celiac. I plan on talking to my dad's wife's brother if I see him while I'm down there and I'm sure I will.

Into the trenches. We were so willing to do what was necessary to maintain our health. A type of purpura is mentioned in dangerous grains and I still think Talitha's purpura was a result of impending celiac, or at least gluten sensitivity. I actually started preparing my husband for the possibility of a radical diet change before I got my ELISA scores back.

Sigh. Why are so many people so willing to die for their beloved food.

[rinne]

Sigh. Why are so many people so willing to die for their beloved food.

I know, at my birthday party one friend just kept saying over and over again but you can't have GLUTEN and every time she said it she would grimace like it was just the most awful thing in the whole world. I was like, no big deal, remember I had just found out I had Lyme disease.

[miamia]

Andrea, Rinne , Rachel,Thank you everyone for your support!!!

Rachel-

I know fibro, ibs- doctors spout these out so easily- for that reason there "easy" and there are medications for them- TO me its like saying "I dunno"

And believe me when the gastro gave me the results of the eos test I wanted to punch him becasue of the way he said it he was like ok well I checked this part, this part this part you don't have it, this isn;t your diagnosis so your back to your doctor. I sware -what happenned to that bed side manner doctors are supposed to have.

I am going to look today for the results from igenix if I can't find my copy I am going to get it from my doctor. I might post them here or at least compare them to ours and rinnes so I can get an idea of what they mean. I am anxious to do this but my test results are at my parents so Ia m going to have to head over there later and look though them - I hate waiting.

I started the diflucan I have been on it for 3 days now. So far my major complaint is that it is messing with my sleep- which I didn;t even think was a side effect. I am only on half dose right now - my doc knows how sensitve I am and dosen't want to overload my system. I am gonna try to stay on it for the shortest duration of time I can and then seee if I can switch to something more natural but right now the candida is so bad it really needs something strong to combat it. I am really wondering how I will feel if I can truly get it under control - I don;t think I ever have since I have been sick and it really can cause alot of symptoms I have . While I don't think its necessarily my underlying problem I think ridding my self of it it may be key in getting to whatever that underlying problem may be. Does this make sense?

Rinne-

I completly agree I hate when people just accept that they are sick- So many people are told they ahve something that is incurable and go out and find more info and are able to combat it as opposed to capitualting to it. Thats why I ahve so much respect for everyone here . We are fighters and that is hard to do!!

Miamia

[dlp252]

donna.....OMG....this is heaven. Is this a gluten-free cruise? if not how are you handling it?

gotta eat......

I agree! Nope, it's not a gluten-free cruise. I've faxed them a letter (as it said to do on their website) and I'll talk to the head waiter when I get there. I'm not too worried about the whole thing...in my two past cruises, they've been very accommodating even when I didn't have a known dietary restriction, so I think I can do it. I AM a little worried about one of our shore excursions though...it's a power boat thing and including travel to/from it's a whole 8 hours long, so I'm just a bit concerned. I'll take fruit and nuts and a nutrition bar that is legal on this elimination diet with me.

I am just feeling so overwhelmed tight now and sleeping terribly- I just want to fell good even for a day and I swear I can't remember the last time that happened. Sorry to be so down.

Miamia

Miamia, so sorry...if you can be down anywhere it's here! We totally understand what that's like--to just want to feel good. I just want to feel "normal" again. I really would be interested to see your results too. I expect that mine will come out negative when I actually get around to testing...I don't know why, maybe it's just been so long that I haven't felt well, and there just never really ever seems to be anything wrong when they test me. At least I had the adrenal tests show something, lol.

[rinne]

A friend passed this along, Igenex testing:

The CDC states their test criteria should not be used alone by doctors

to make a Lyme diagnoses. Wrongfully, many doctors only use the CDC

testing criteria. The diagnoses needs to be based on symptoms,

history or exposure to ticks, and testing. Fortunately, your doctor

is using one of the best labs in Igenex. Igenex tests for all the

Lyme bands (most labs do not). The bands are indicative of certain

antibodies you have to various antigens from Lyme. Igenex reports how

strong these bands show up using +'s. The more pluses the darker the

band is. An indeterminate band means that there appears to be a faint

band, but it is difficult to tell. The negative or positive result on

the Igenex test only indicates if it meets the CDC conservative

criteria or not. .

Band 41 is for the flagellum, or tail,

of the bacteria. Many bacteria besides Lyme have a flagellum, so this

band alone without looking at symptoms and history should not be used

for diagnosing Lyme. Band 41 shows up in 85% of those with Lyme, 42% in those

that do not have Lyme, and 75% of those that have Syphilis. Other

bands like 58 are more indicative of Lyme. It shows up in 36% of those

with Lyme, but only about 2% in those that do not have Lyme and 3% in

those with Syphilis. Other bands like 23-25 only show up in those

with Lyme. So certain bands cary a lot more weight than others. The

CDC criteria does not take this into account. How long you have had

Lyme affects how strongly the bands show up. If you have just

recently been bit by a Lyme carrying tick you may not show any bands,

since it takes your body time to create the antibodies. The Igm

antibodies show up first and then the Igg. Also, if you have had Lyme

for along time you may not have many or any bands as your immune

system is worn down.

[jerseyangel]

Last weekend I tried Zoloft--an antidepressant.

I just want the nagging anxiety to go away and stay away. I'm tired of doubting myself, going through a case of nerves every time I go to leave the house, and just generally watching life pass me by.

I was at my wits end about it.

As it turned out, I had a terrible reaction to it--I was up all last Saturday night with D and a numb feeling in my head. The whole next day, I was nauseous and out of it. The doctor said she could prescribe something else, but this scared me so much that I'm going back to the drawing board to try and come at this in a more natural way.

I have begun using my treadmill again--I used to be able to hop on and do a mile in no time. This time around, I'm working up from 3 minutes. I've also re-started Pilates.

I still think all I have going on is a case of long standing Celiac and a very leaky gut. I think the only answer for me is to be "patient" forever.