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Igenex test and test #488

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Posted 1/16/2016 5:43 PM (GMT 0)
I finally received my Igenex results after it getting lost in the mail once and finally 2 months later I received it.

I have IND results from Igenex and they recommend me getting the confirmation test #488 done. Has anyone gotten this done?? Is there any way it could still be negative?

I still plan on making an appointment with a LLMD

Here are my results

IGm
18 kDa. -
**23-25 kDa. -
28 kda. -
30 kDa. -
**31 kDa. +
**34 kDa. IND
**39 kDa. IND
**41 kDa. ++
45 kDa. -
58 kDa. +
66 kDa. +
**83-93 kDa. IND

Thanks for any help!
Posted 1/16/2016 5:56 PM (GMT 0)
What was your IGG results that may help?
There seems to be some debate as to what can cause band 31 to be positive but of the possibilities it is a small list with Lyme obviously one of them. Isn't the 488 test the epitope test? This test is used to determine if the 31 band is actually due to the Lyme spirochete. If it helps you feel better about the diagnosis I would go ahead and do the test. Lyme treatment can be a very long road and it helps to know you are doing the right thing. However you also have other Lyme specific indeterminate bands. If it where me I would feel comfortable with the test results just how they are.
Posted 1/16/2016 6:46 PM (GMT 0)
Since you were only positive on bands 31 and 41 (out of the 'list' of bands ) - and for some reason there has been some doubt about 31 being lyme specific, they do the extra test on band 31...and will confirm if it's indeed from lyme.
I can't remember the test # - but it sounds like the Epitope test they are recommending you have done.

It seems some Dr.'s (even LL ones) are on board with doing that test.

My husband had it done.

If you can spare the money, it would be worth while...not just for yourself...but because even some Lyme Literate Dr.'s are now wanting it.
Posted 1/16/2016 6:46 PM (GMT 0)
I had #488 & #489 test and it was positive. My initial bands were:
31, 39 IND, 41, 58 & 66.
Posted 1/16/2016 7:08 PM (GMT 0)
Igenex used to say that Band 31 was Lyme specific. I still don't know why anyone (labs, CDC) started declaring that band 31 isn't Lyme specific with all these articles saying it is:
Band 31:
www.ncbi.nlm.nih.gov/pubmed/1520966


www.ncbi.nlm.nih.gov/pubmed/9440203


www.ncbi.nlm.nih.gov/pubmed/8406878


www.ncbi.nlm.nih.gov/pubmed/8005219


www.ncbi.nlm.nih.gov/pubmed/10030131


And more references can be found here:
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

But besides band 31 - you have 3 other Lyme specific bands that are showing reactivity: bands 34, 39 and 83 - 93.

Band 34 indicates OspB (Outer Surface Protein "B")
Band 39 indicates BmpA (Bacterial Membrane Protein "A")
Band 83 indicates a high molecular mass protein that is specific to Bb.
Band 93 indicates an immunodominant protoplasmic cylinder antigen that is specific to Bb.

You can find these (with supporting PubMed* articles) here: www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

*= PubMed is a free resource that is developed and maintained by the National Center for Biotechnology Information (NCBI), at the U.S. National Library of Medicine (NLM), located at the National Institutes of Health (NIH).


With those test results and if you are having symptoms, I would encourage you to find a LLMD and get started with treatments.
Posted 1/16/2016 8:03 PM (GMT 0)
Thank you all for the responses. I feel like I may just meet with a LLMD and get that test done.
I figure that will be part of it anyways and I can hopefully get treatment started quickly if need be.

My IGG was

negative all but for
**31 kDa IND
**41 Kda ++

I don't know if the herpes virus reacts to any of the bands...I feel like I have read that somewhere, but I had an active cold sore at the time. I have gotten them since I was a child.

The doctor I saw wants to refer me to an infectious disease doctor just to rule lyme out and of course he thinks I am fine since it is negative by CDC standards. He gave me 2 weeks worth of doxy which obviously isn't going to do too much. I have been having symptoms since the summer.

k07 it sounds like you have the same results initially as I do.

This has been so frustrating! I had to order this test on my own because I knew my doctor didn't believe me after my elisa being negative. I have no history of bite or rash, but something in my gut has been telling me that this was a possibility.

Would it be a good idea to try that urine test? Or do any of the LLMD do them in addtion to the others?
Posted 1/16/2016 8:08 PM (GMT 0)
Please do not see an Infectious Disease doc unless you verify that they have had training from ILADS - there are only a small handful in the US that have.

Many LLMD's still order their own testing from what I understand.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ LLMD in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. You can go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php
Posted 1/16/2016 8:11 PM (GMT 0)
I wouldn't go to an ID Dr. - unless you know one that is Lyme Literate.
You don't need to hear 'you don't have Lyme disease" again.

What urine test are you referring to?
If you're talking about the Epitope test - that is blood, not urine.

If you could get in to see a LLMD soon...you could ask if he/she wants the Epitope test done. They really shouldn't need it....afterall - Lyme should be a clinical diagnosis.

Unfortunately, I'm seeing it every now and again where the LL Dr.'s are wanting confirmation if you only have bands 31 and 41...
Posted 1/16/2016 8:19 PM (GMT 0)
wink good to see we are posting at or nearly at the same time again in several posts today, Girlie!! LOL!
Posted 1/16/2016 8:27 PM (GMT 0)
Thank you for responding so quickly!

Yeah, I think I probably won't see an ID doctor. I did find one LLMD near me, but can't find any information on reviews for them. Traveler-I will send you an email to see if you have anymore contacts. Thank you!

I was refering to the lyme urine antigen test. I know it is still new and not sure how many see that as a reliable source for diagnosis.
Posted 1/16/2016 8:58 PM (GMT 0)
LOL, Traveler!

jray21 - how about starting a new thread with the title 'urine antigen test' or something like that...
Unfortunately I don't know anything about that one.
Posted 1/16/2016 9:15 PM (GMT 0)
ok, thank you!
Posted 3/29/2016 1:16 AM (GMT 0)
Who knows anything about blood test CD57? Is it better than test #488? I found that this test should be made if result of WB is indeterminate. It made by LabCorp.

I have Igenex IGM IND
**31 kDa +
**34 kDa IND
**39 kDa IND
**41 Kda +++
IGG NEG

Do I have Lyme? My integrative Dr. thinks 'Yes', my family Dr. 'NO' (just because my ELISA is negative. I suspect I had a tick bite years ago.
I developed Rheumatoid Arthritis (diagnosed in October 2015).
Posted 3/29/2016 1:43 AM (GMT 0)
Hi nata12 - welcome to our community.
I will be brief - my iPad battery is almost dead...so will write more later.

You have enough of a response to indicate you have LD.
You could do the Eptope test on band 31 if you want.

But, it's not really necessary, as you have IND on other bands that are Lyme specific.
Posted 3/29/2016 1:59 AM (GMT 0)
CD57 is not enough to diagnose lyme disease...

Unfortunately, the CD57 may be lower in other infections/diseases - not just LD.

CD57 is sometimes used to track progress...as treatment progresses, and the patient gets better, the number is supposed to rise. But, it hasn't been reliable.

The epitope test on band 31 will rule out cross-reactivity - and confirm (or not) that it is Lyme disease.

A LLMD should be able to diagnose you clinically...and use these test results as a back-up to the diagnosis. (even without the epitope test done)

My husband had it done...and he was glad he paid the $100 for it.
Posted 3/29/2016 2:30 AM (GMT 0)
Thank you Girlie,

now I need to find LL doctor in Chicago area.
Posted 3/29/2016 4:43 AM (GMT 0)
If you need help finding one..you can start a new thread titled: "Looking for LLMD in Chicago area"

Then enable your email option so members can send you recommendations privately. We don't post names of LLMD's on here for privacy reasons.
Posted 3/29/2016 3:01 PM (GMT 0)
Hi Nata!
Welcome to our community!

To find a LLMD, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


And a new resourcewww.LymeDoc.org


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php
Posted 1/3/2017 6:12 PM (GMT 0)
Hello. Fairly new to all of this here and an having trouble finding answers. Hope I'm in the right place here....

Anyways recently(past 3 mo) have had some weird symptoms gong on. Started reading into lyme and boy is there a lot of overlap in symptoms. At least found an LLMD in the area that would take me as a patient. Insisted on the igenex test. Now i have received the results (igenex says negative)

IGm:
**34 - Ind
41 - +

All other bands -

My question is, since i believe this would be a newer infection and alot of llmds consider "ind" as positive (and 2+ bands= Lyme) is this actually a negative result? I have not set up a new apt w/llmd since he is out of network and quite expensive and really don't know where to turn next.


Any thoughts/opinions are greatly appreciated.
Posted 1/3/2017 6:30 PM (GMT 0)
Hi mistercamp.

You posted a month ago requesting LLMD information. Did you get the information you requested?
I'm just wondering if there are other LLMD's that aren't out of network.

Also, a link to a Texas support group was posted for you...that is also an option to see who other people in your area with lyme are seeing.

There is also the herbal route you can go.

Band 34 is lyme specific. IND means it's not negative...but not strong enough for the lab tech to call it positive.
Since Lyme is a clinical diagnosis...I wouldn't be concerned with a 'negative' test result.
Band 41 (although not lyme 'specific') - often shows up on 'our' test results.

If you are interested in starting an herbal protocol...we can help you...many, many members on this forum are choosing to go that route.

Here is the thread you previously posted:

www.healingwell.com/community/default.aspx?f=30&m=3750436
Posted 1/3/2017 6:49 PM (GMT 0)
Hi Girlie, thanks for the quick response.

I did get the llmds i was requesting although still haven't found one i feel comfortable going back to continually for a while. I haven't found an llmd in network yet, but am still looking.

I have looked into Buhners and will likely start that soon. I knew 41 was not Lyme specific (flagella) and 34 is. However at the moment I'm not too sure what to pursue next. Igenex reports the results as negative and the llmd office (although maybe not an ilads llmd?) also interpreted it as such, but i am not 100% convinced either way.

Really just bummed as i still do not have a definitive answer. I still think Lyme is a strong possibility, but maybe it could be something else (b. miyamotoi is similar but no test for it yet? Maybe something else?)

Back on the subject of herbals: does this seem to help much? Isn't it generally something you do in combination with abx? Any recommendations where to get it from?

Sorry for the long post/lots of questions. Have a ton of thoughts running through my head. Thanks for the help, I really feel like I'm losing my mind these days
Posted 1/3/2017 6:59 PM (GMT 0)
A LLMD (ILADS) knows that Lyme is a clinical diagnosis...and testing is just to back up the diagnosis.

Many people don't have the immune function to produce the required antibodies that translate into a positive test result.

Many, many people use herbals and are having great results. No, you don't need to do in combination with abx.

Buhner's protocols are popular. You can purchase his books and the full protocols are listed.
Here is the website. It's not as comprehensive as his books, but, it's definitely a place you could start.

buhnerhealinglyme.com

Some Buhner recommended sources for herbs:

Green Dragon Botanicals (capsules)
Woodland Essence (tinctures)
Sage Woman Herbs (tinctures)

Lots of help on this forum if you want to go the herbal route.

Other thing: You need to start detoxing...if you haven't already. Start of with a couple methods...and every few days add in another. You will want to do multiple methods daily.
Posted 1/3/2017 9:40 PM (GMT 0)
Something else you should realize that B. miyamotoi and Lyme are very, very closely related - they are both Borrelia infections, just different strains of the same infection. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

And I second Girlie's comments about detoxing - it's a very important part of our healing.
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