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Rachel--24

Omg...i Might Be On To Something

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Hi everyone, I am so far behind on all the latest scientificness and events in everyone's lives. Just wanted to say hi and let you all know I am thinking of you :wub:

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

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

Miamia posted her IgM and IgG. Since there was some differences I posted both of them as well.

So it goes Rachel, Rhonda, Mia and Mia.

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

Hmmm, that throws a wrench in the works doesn't it? :(


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Hi everyone, I am so far behind on all the latest scientificness and events in everyone's lives. Just wanted to say hi and let you all know I am thinking of you :wub:

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

Yep, has to be ordered by a doctor ... I guess A psychiatrist is licensed to prescribe medicine so he qualifies. :blink: Maybe a doc would give you the test if you had the attitude, I've tried everything else, I just want to rule this out, too, since I'm concerned and my symptoms match. This is what I said to my doc who then told me it was a good idea for me to take the test to ease my mind, but she was positive it'd come back negative. How would she know? I just don't understand how she could say that? :blink:

Miamia posted her IgM and IgG. Since there was some differences I posted both of them as well.

So it goes Rachel, Rhonda, Mia and Mia.

Hmmm, that throws a wrench in the works doesn't it? :(

Thanks, I figured it was something like that, but didn't know who had two sets of numbers.

I wish I understood this better .... Mia's looks like more of the important ones are positive than either Rhonda or Rachel. Is that right or am I missing something?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi everyone, I am so far behind on all the latest scientificness and events in everyone's lives. Just wanted to say hi and let you all know I am thinking of you :wub:

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

Well, hi Julie :D I've missed you!

I can see how this news would throw a monkey wrench in your plan to be tested--your doctor won't do it (sign off) for you?

I also wanted to tell you that my Bare Minerals makeup is not agreeing with my skin anymore :angry: I remember you having a problem with it, too. I ordered some things from Smashbox via Sephora. We'll see how that goes....what did you end up using?


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Well, hi Julie :D I've missed you!

I can see how this news would throw a monkey wrench in your plan to be tested--your doctor won't do it (sign off) for you?

I also wanted to tell you that my Bare Minerals makeup is not agreeing with my skin anymore :angry: I remember you having a problem with it, too. I ordered some things from Smashbox via Sephora. We'll see how that goes....what did you end up using?

Hi Patti, I've missed you as well :)

I don't have a doctor, nor insurance, so I don't know how I will be able to swing this. My practitioner has a group of collegues with a variety of titles, acupuncturists, homeopathic doctors, chiropractors, naturopaths, but obviously those don't apply.

The Bare Minerals, I completely stopped using it. I am so sorry to hear it is bothering you now :( I think I am allergic to the talc in it, or something else that is definitely not agreeing with my skin. I went back to a foundation I buy at the health food store and then finish it off with Burts Bees powder.....let me check on the brand of the foundation and I will get back to you :)

Where is Beverly?

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Hi Julie! Some chiropractors are MDs and can prescribe...maybe the chiropractor at her office is??

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Julie,

Beverly is around--I was just talking to her on another thread.

I never thought about the talc. I suspected the cornstarch, only because when I was snapping corn on the cob in half for my husband (I'm intolerant), my hands felt dry and itchy. Interesting....

That is a difficult situation you have--I don't see why they won't accept the signature of one of the practioners on your team--that seems unreasonable to me. :(


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I wish I understood this better .... Mia's looks like more of the important ones are positive than either Rhonda or Rachel. Is that right or am I missing something?

Yep, I think hers look more positive for lyme too.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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These are my results- there are no definite positives

IgM Western Blot /my numbers for the IgG:

18 kDa. neg /18 kDa +

22 kDa. neg /22 kDa neg.

**23-25 neg /**23-25 kDa IND

28 kDa. neg /28 kDa neg.

30 kDa. ++ /30 kDa neg.

** 31 kDa IND /**31 kDa IND.

**34 kDa. Neg /**34 kDa IND.

37kDa Neg/Neg

**39 kDa. IND /**39 kDa IND.

**41 kDa. ++ /**41 kDa +++

45 kDa. neg /45 kDa +

58 kDa. +. /58 kDa ++

66 kDa. neg/66 kDa neg.

73 kDa. neg /73 kDa neg.

**83-93 kDa. neg /**83-93 kDa ind.

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

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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.

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

That is what I was thinking.

Hopefully Mia will be able to go to the doctor in Hyde Park that Carla found out about.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I have to go back and see what else has been posted...I am sooooo dumbfounded right now. :huh: Oh yeah....not to mention SHOCKED that yet another Rachelvillian most likely has Lyme Disease. :blink:

Miamia

((((((((((((hugs))))))))))))


Rachel

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Rachel,

What's the difference between the IgM and the IgG?

More of Mia's IgG was positive than the IgM and when we get Carla's results I'm going to want to add hers so it's all readable.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Rachel,

What's the difference between the IgM and the IgG?

Western blot report usually contains two parts: IgM and IgG. These are immunoglobulins (antibody proteins) produced by the immune system to fight infection.

IgM is produced fairly early in the course of an infection, while

IgG response comes later.

Some patients might already have an IgM response at the time of the EM rash; IgG response, according to the traditional model, tends to start several weeks after infection and peak months or even years later. In some patients, the IgM response can remain elevated; in others it might decline, regardless of whether or not treatment is successful.

Similarly, IgG response can remain strong or decline with time, again regardless of treatment. Most WB results report separate IgM and IgG band patterns and the criteria for a positive result are different for the two immunoglobulins.

***Igenix does NOT have seperate criteria for positives on IgG and IgM. Other labs require that 5 bands be positive on the IgG for a positive result. This makes for ALOT of false negatives. By Igenix criteria, The IgG is considered positive if 2 or more of the double starred bands are present. The criteria is the same for IgM.

More info about bands...

certain other bands are considered highly specific for Bb (Lyme) --

31 kDa band, for example, or

34 or

39 or (anywhere between 22 and 25).

Also thought to be species-specific are

The 83 and

94 kDa bands.

Many Lyme disease scientists believe that any patient whose IgG Western blot exhibits bands at, say, any three (or even two) of these locations almost certainly has Lyme disease, regardless of whether or not any other bands are present. They feel that these bands on a Lyme Western blot are simply more meaningful than other, less specific ones and that a rational interpretation of a WB result should take this into account. Unfortunately, this does not often happen, and will happen even less with the new CDC criteria.


Rachel

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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:

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

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Rachel /Rinne /Mia

IgM Western Blot /IgG: /IgG

18 kDa. neg /18 kDa neg. /18 kDa +

22 kDa. neg /22 kDa neg. /22 kDa neg.

**23-25 neg /**23-25 kDa neg. /**23-25 kDa IND

28 kDa. neg /28 kDa neg. /28 kDa neg.

30 kDa. + /30 kDa neg. 30 kDa. ++ (IgM)/30 kDa neg.

** 31 kDa neg /**31 kDa IND. /**31 kDa IND.

**34 kDa. IND /**34 kDa IND. /**34 kDa IND./37kDa Neg

**39 kDa. IND /**39 kDa IND. /**39 kDa IND.

**41 kDa. ++ /**41 kDa pos. /**41 kDa +++

45 kDa. neg /45 kDa neg. /45 kDa +

58 kDa. neg. /58 kDa pos. /58 kDa ++

66 kDa. + /66 kDa neg. /66 kDa neg.

73 kDa. neg /73 kDa neg. /73 kDa neg.

**83-93 kDa. neg /**83-93 kDa neg. /**83-93 kDa ind.

Redone with Mia's IgG only except one IgM as noted.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Rachel,

Your last post means that Mia should have been diagnosed positive.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Miamia, OMG, I am sending you hugs right now. Yes to everything Rachel said.

Oh, and :ph34r: Lyme Clan :ph34r::).


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Andrea....I never posted my IgG results but here they are

18 kda. neg

22 kda. neg.

**23-25 kda. neg.

28 kda. neg

30 kda. neg

** 31 kda. neg

**34 kda. IND

**39 kda. IND

**41 kda. ++

45 kda. neg

58 kda. +

66 kda. neg

73 kda. neg

**83-93 kda. neg

My IgM

18 kda. neg

22 kda. neg

** 23-25 kda neg

28 kda. neg

30 kda. +

**31 kda. neg.

**34 kda. IND

**39 kda. IND

**41 kda. ++

45 kda. neg.

58 kda. neg.

66 kda. +

73 kda. neg.

**83-93 kda. neg.

Now if Miamia's were shown like that with the positives in red....you would see a big diference in how much she looks positive for Lyme Disease.

This is what her Dr. should have payed attention to:

*****Presence of only one double starred band or Indeterminate double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks.*****

It clearly states this right on the test results.....as you can see by looking at her results (I think they are on the last page?)....she has MANY Indeterminate double starred bands.....only ONE can indicate clinical significance. She has all of them....thats why I'm dumbfounded that there was no follow-up. :huh:

Rachel,

Your last post means that Mia should have been diagnosed positive.

Her Dr. should have looked at this and realized that she *most likely* has Lyme and pursued this before all else.....instead he is treating her for Candida....which is there BECAUSE she *most likely* has Lyme.

And yes....I am still wanting to punch him! :ph34r:


Rachel

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Sadly, the same thought went through my mind. <_<


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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

Yea--because even they know that many times the doctors have no idea.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Rachel, I do try to resist. :lol:

:P


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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