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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I suspect it might be why Igenex sends out a copy of the results to each person who is tested.

Yes....its VERY important to request and review all lab results to make sure the Dr. is interpreting the results correctly. NEVER take the doctors "word" for it. <_<

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  • Replies 33.4k
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rinne Apprentice
rinne
Posted

Miamia, when were these tests done?

I wish I had been on earlier.

Does anyone else know?

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, I do try to resist. :lol:

:P

:lol::lol::lol:

I havent noticed the "resistance" part yet. :lol:

:P

Miamia, when were these tests done?

I wish I had been on earlier.

Does anyone else know?

I dont know...I asked the same thing. I'm thinking they were done awhile back....before the Lyme clan came to be. :unsure:

Does anyone know how long miamia has been sick?? Rinne is it longer than us (4 years) or shorter??

rinne Apprentice
rinne
Posted

I don't know but it has been for quite a while I think. :(

AndreaB Contributor
AndreaB
Posted
I suspect it might be why Igenex sends out a copy of the results to each person who is tested.

That's a pretty good idea on their part.

I don't know how long she's been sick. :( Hopefully she'll be on tonight and can fill us in, as well as when she had these done.

Why do I have a feeling they were done awhile ago? :(

happygirl Collaborator
happygirl
Posted

x

CarlaB Enthusiast
CarlaB
Posted
:lol::lol::lol:

I havent noticed the "resistance" part yet. :lol:

Me either! :lol:

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jerseyangel Proficient
jerseyangel
Posted

My goodness. This is a sin if the doctor had the results that Rachel and Rinne say are positive and didn't follow up.

Miamia--I don't mean to speak about you while you're not here, it's just that I feel so bad about this. I hope that this revelation is the beginning of your recovery :)

DingoGirl Enthusiast
DingoGirl
Posted

oh my gaaaawd!!!!!!! :o:o:o Another one....Miamia, I"m actually not shocked. I just hope you can get some treatment and really start to feel better....the same thing that I hope for all of you.

So, The Dr's R have diagnosed this :P Why don't you two just hang up a shingle, and we'll come and see you? :o:lol: You guys DO seem to know more than the doctors.....that is really scary.

happygirl Collaborator
happygirl
Posted

x

CarlaB Enthusiast
CarlaB
Posted
can i voice that i am apprehensive about carlas...and potentially mine...and anyone elses results... sigh :(

The only thing I'm apprehensive about is that the results will be unclear. I am really starting to believe this has to be my problem, it just makes too much sense. I hope the Igenex results are clear .... I'm afraid of being uncertain -- either positive or negative.

I feel like in going to an LLMD that I will get diagnosed. But I have reservations about it, too. Do they diagnose everyone who has these problems with Lyme? Maybe that's because everyone with these problems might have Lyme (or at the very least another bacteria that acts similarly and responds similarly).

I wouldn't be surprised if it was your problem, too, Laura. I actually think Lyme would be less difficult than EOS, too ... EOS sounds very scary ... such a limited diet! I hope your results come back negative on that one!!! You'll do fine with it if it's positive, I am sure ... Either way it's a chronic illness we have to deal with forever, I just hope to know soon what the illness is ... and I hope you find out soon, too.

happygirl Collaborator
happygirl
Posted

x

miamia Rookie
miamia
Posted
Andrea, there are three people, but the numbers are four across, I'm confused.

Miamia, let me know if you want the name of the doctor. He's in Hyde Park and is Lyme Literate.

carla that would be great

DingoGirl Enthusiast
DingoGirl
Posted

Oh good, I see Mia - - she can tell us everything, but thank you Laura for the briefing! :)

can i voice that i am apprehensive about carlas...and potentially mine...and anyone elses results... sigh :(

Yes, I would be very apprehensive too. :(

What brought all of you together here, it seems, was the fact that some of you were not getting significantly better (or permanently better) by gluten removal, for one, and also that there are still SO many intolerances, not to mention aches, pains, and general overall continual malais and decline, despite your best efforts, and still reacting to so many foods or losing lots of weight....it sounds like that's what Lyme does (in some cases - I know it's stealthy). So I am thinking that Laura, Bev, Carla and Julie may actually have Lyme also....who else?

I had something profound to say, the thought just plain dingo'd itself :( I am totally off today.....Rinne will express what I wanted to say quite eloquently, I am sure.

But now - what , five of you? - - have Lyme, and you all had such similar symptoms.......and longterm misery.... :o:ph34r::o

miamia Rookie
miamia
Posted
OMG miamia. :o

I have to say....I CANNOT believe your Dr. dismissed these results. I just dont know what to say. You really need to see a Dr. who is familiar with Lyme. These results are VERY much looking like you have Lyme Disease. Much more than mine and Rinnes results. I'm serious Miamia....you need to pursue this. If your Dr. dismissed these results he's not the right Dr. for you...not for Lyme anyway.

I'm pre-posting so I dont know if Rinne has seen these results are not or if anyone else has commented. If these were my results I would be much more certain that I have Lyme.

Thank God you found these results....I really think they mean something and further testing needs to be done or a Dr. who knows about Lyme needs to take a look at these results. Igenix clearly states on the results that IND's have clinical significance on double starred bands and further testing should be done. This would apply for only ONE indeterminate on a double starred band....you have SEVERAL. :blink:

You basically have a positive or weak positive on EVERY critical band indicating Lyme. I think your test is more positive then mine and Rinnes put together. :o

I am just dumbfounded that your Dr. would order these tests and then ignore the results. There should have been some follow up with results like this....even though they are "technically" negative. I would go so far as to say I'm more than 90% sure you have Lyme Disease based on these results. I dont know whether you have any Lyme Literate M.D.'s in your area but I would reccommend finding out and seeing a different Dr.

I cant even believe this....how long ago did you take this test??

Those Indeterminates mean that they found something....its a "weak" positive but the band was not dark enough to register as a +.

Its highly possible that if you started treatment those Indeterminates would then come back positive. Every single one of them are on the bands that are most specific for Lyme Disease. You have a high positive on band 41...if any ONE of those Indeterminates would have been a little stronger in intensity you would have had a positive test for Lyme Disease.

OMG...I'm sorry Miamia but right now I feel like I want to punch your Dr. for letting this go. The only thing I can think of is that he doesnt know anything about Lyme or how to read these test results. The thing that most bothers me is that it *says* right on the test that results like these (even if negative) need to be further pursued because the IND'S on double starred bands have clinical significance.

So yeah.....I want to punch him. :ph34r:

Rachel-

this is why I was so overwhelmed when I got them today. I immediatly got on line and posted - especially since on the results it says- "Diagnosis should not be based on lab tests alone. Results should be interpreted in conjunction with clinical symptoms and patient history" and something else about the low assay of this test and recommending further testing. I guess when I first got the results I didn;t really look ove rthem I just excepted I didn't have it. I have a doctors appt. on WEdnesday and I am bringing these and if he dosen't want to pursue it I will just go to another source, becaue it defintly looks a bit fishy to me. I am so happy you agree and I'm not crazy

Miamia

Ditto!!! Maybe I should practice some of my ant relocation techniques on him! Unbelievable!

I love you donna

I don't know but it has been for quite a while I think. :(

I just checked and this test was done in MAY!!!! I feel stupid right now for not looking at it closer. I am a little bit overwhelmed here- The meds I am taking for candida are giving me major brain fog and I can't think straight already but now trying to figure this out is insane. Thank you everyone - god I feel like I ahve such a wonderful support system- it means so much to me!!!!

I have been sick for 4 years now- but I got sick when I was younger and they thought it was just reflux finally I was able to control it but then 4 years ago after going on birth control which I reacted very strongly to I was never the same again- the thing is when I first got sick I spent the summer doing some traveling and I had stayed at ahouse that was pretty rustic- bugs everywhere type of thing- makes you wonder........

AndreaB Contributor
AndreaB
Posted
can i voice that i am apprehensive about carlas...and potentially mine...and anyone elses results... sigh :(

Carla's seemingly had hers awhile so I'll be real curious about her test results. I am really curious about you too. Seems like those with high intolerances, chemical sensitivities etc are testing positive.

So I am thinking that Laura, Bev, Carla and Julie may actually have Lyme also....who else?

Julie's already said she has it based on her bioscan and now she's got to find a doctor who will sign the note for the Igenix test.

I also think Judy may still have problems with lyme.

But now - what , five of you? - - have Lyme, and you all had such similar symptoms.......and longterm misery.... :o:ph34r::o

Rachel, Rinne, Julie and Mia. More than likely Carla.

I have a doctors appt. on WEdnesday and I am bringing these and if he dosen't want to pursue it I will just go to another source, becaue it defintly looks a bit fishy to me. I am so happy you agree and I'm not crazy

Make sure you hang on to those. You don't want your doctor to "forget" to give them back either.

I'll be waiting for your update post.

miamia Rookie
miamia
Posted
Poor thing, she's been sick with multiple issues on-off....more so "on" in the past 9 years or so...more so in past 4-ish, too. reflux since a kid, then flared during her teens, continued on into early 20s... late early 20s is when things got much worse. gluten intolerance and candida, now other food intolerances....she's my age, i think (25).

m-hope you don't mind me trying to BRIEFLY sum it up for you sweet girl. trying to save your energy for the lyme posting. if you want me to take any of this down, let me know :)

Laura

I just posted some of this before I read your post- I don't mind at all!!

AndreaB Contributor
AndreaB
Posted
I just checked and this test was done in MAY!!!! I feel stupid right now for not looking at it closer.

Back around when this thread was started (in April). :o

Don't feel stupid. We are trained to trust our doctors. Unfortunately that is becoming a dangerous thing most times.

DingoGirl Enthusiast
DingoGirl
Posted
Julie's already said she has it based on her bioscan and now she's got to find a doctor who will sign the note for the Igenix test.

I also think Judy may still have problems with lyme.

Duh, totally forgot about Julie....where is my brain today? I sent her a big email about her results a couple of days ago! Sheesh.

Yup, Judy too, I think. And I am convinced Bev has it.

You should all take a group trip to that doctor in Hyde Park. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

OMG.....my head is really spinning from all of this.

So maybe miamia *will* be getting a diagnosis for Xmas this year! :)

It looks like me, Rinne and miamia all went downhill about the same time....4 years ago. :(

Miamia,

Dont feel bad about not having looked at your tests....you trusted your Doctor. We've all been there. Its part of this whole process....somewhere along the line we've all had to stand up for ourselves and to take a more active role because we have that determination and strong desire to get better. Thats why we're all here on this thread....because we dont give up.

The main thing is that now you have a better understanding of the results and can go from there as far as getting to the bottom of this....and I know you will get to the bottom of it. :)

I'm really glad we all have each other...I dont know what I'd do without all of you guys.

((((((((((hugs)))))))))) for everyone :wub:

I'm proud of all of us for hanging in there.....it hasnt been easy but OMG....I think we are on to something! BIGTIME. :o

Love you guys :)

CarlaB Enthusiast
CarlaB
Posted

Uh, oh, another hug fest!! :lol:

I certainly don't feel ALONE in this!!! :wub::wub::wub:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
So, The Dr's R have diagnosed this :P Why don't you two just hang up a shingle, and we'll come and see you? :

Hang up a shingle??? :unsure:

But, apparently preference doesn't always work ;)

Nope..it doesnt. <_<

If I got to pick...I'd be a happy Celiac eating one of those "Down Under" desert thingys at the Outback.

But instead I'm eating the same 5 foods I've been eating every day the last 2 months.... :huh:

CarlaB Enthusiast
CarlaB
Posted
Hang up a shingle??? :unsure:

It means put up a sign (go into business). Old signs were like shingles, especially considering old roofs were made out of wood. I mean back in the old, old days!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
so---do you lyme ladies who know of people who tested "clearly positive" on igenix?

Yeah...many, many people on the Lyme Boards got diagnosed with a "clearly" positive test from Igenix. Other people who've been sick for awhile have had to go on antibiotics and then retake the test to get the IND's to show up positive.

I've read lots of "personal" stories all over the web too.....lots of people get a definate answer.....but lots of people also get equivocal's...which is the case for all of us here so far.

Equivocals can sometimes be pretty clear.....like with miamia's results. Mine....isnt clear enough to satisfy me right now. I want further testing.

This is what is said about Equivocal's...

Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.

If these positive blots are found by specialty labs (Igenix), over 99% of those patients will respond to antibiotics.

AndreaB Contributor
AndreaB
Posted
I'm really glad we all have each other...I dont know what I'd do without all of you guys.

((((((((((hugs)))))))))) for everyone :wub:

I'm proud of all of us for hanging in there.....it hasnt been easy but OMG....I think we are on to something! BIGTIME. :o

Love you guys :)

I love hug and love fests!!

(((((((HUGS)))))) :wub::wub::wub::wub::wub::wub:

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    • 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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