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Positive Elisa, Negative WB Lyme?

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Posted 2/2/2017 3:18 AM (GMT 0)
In October I was tested for lymes because I was feeling faint. I also had horrible headaches with poor night vision. Couldn't sleep at all. During the day or at night. Horrible breast pain and a really long 34 day menstrual cycle. Had a slightly high WBC count, a temp of 97 and lost 10 pounds very quickly with no effort.

My test was:
Lyme Disease AB 1.15 and Lyme AB Igm 1.11 Line 41 positive. My dr said I was neg for LD.

2 weeks ago I have a UTI and pain in my lower ribs near my spleen. I had an ultrasound and it was slightly enlarged. I took Microbid for 3 days. Broke out in a rash and had heart palps. Stopped it and then I took Cipro. Heart Palps as well. But my temperature went back to normal on both antibiotics. My heart rate went down a few points and I was sleeping again. Could I have been fighting lyme or a spirochete infection with a positive Elisa test?

My current doctor thinks I have anxiety and put me on paxil. Im taking it to take the edge off, but I know something is up. Also if anyone can recommend an infectious disease dr in NYC that works with Lymes that would be great.
Posted 2/2/2017 4:11 AM (GMT 0)
Hi fembot! Welcome to our forum.

You would do better with an LLMD, (Lyme literate medical doctor) than an ID doc. There ARE some good ID docs out there that are ILIADS trained, but most follow the outdated and useless protocol set out by the old Infectious Disease Society of America, which is not likely to treat you adequately.

We usually recommend taking the Igenex lab test, which you can order online and have any doctor sign for.
Also, while I'm at it, I'd like to encourage you to read over our intro "New to LYme?...start here". For some really valuable information that will help you.

You can enable your email address in your profile (visible to members only), and start a thread "Looking for an LLMD in_______________(fill in the blank with your preferred area.) ETA: If you choose to go that direction.

Or email me your location and I'll send you some names and locations, etc. if your area is on my list.

Post Edited (julymorning) : 2/1/2017 11:04:03 PM (GMT-7)

Posted 2/2/2017 4:14 AM (GMT 0)
In the intro I was referring to their is a symptom list, or you can use this chart. www.lyme-symptoms.com/LymeCoinfectionChart.html

You might want to check off any symptoms listed that you may have had and weren't even aware they could be related to an infection of this sort.
Posted 2/2/2017 4:16 AM (GMT 0)
Here is the link to the Igenex web site for further testing if you desire it. igenex.com/Website/#
Posted 2/2/2017 5:33 AM (GMT 0)
Welcome, fembot!


Although band 41 is not lyme specific, it is one that often shows up on the tests when we do have lyme disease.

As julymorning said - you need to see a LLMD. An I.D. Dr. - unless he's lyme literate will not diagnose you as having lyme disease with those results...and often will dismiss the Igenex test results.
Posted 2/2/2017 2:18 PM (GMT 0)
The positive ELISA means something is up. I think things like EBV can also elevate it. However, your symptoms and reaction to abx suggest bacterial infection. A good LLMD can help you sort it out and also look at coinfections. Many infections can cause enlarged spleen (see lyme/coinfection chart below).

It sounds like your western blot was also through a lab like labcorp or quest. These labs are not very reliable for lyme testing. I have a great example - my daughter had positive ELISA just like you and when they ran the blot she had 41 & 58. So for some reason they ran the blot again and the second time (using the same blood) came back with only 41. I have the results to prove it and they also tried to charge me twice! Makes me furious at how ridiculous this is. She was then highly positive for Lyme through a lab in Germany (Armin).

www.lyme-symptoms.com/LymeCoinfectionChart.html
Posted 2/2/2017 2:26 PM (GMT 0)
Does it say on your ELISA whether it was whole cell lysate? C6? VlsE/pepc10? There are different types of ELISAs, some more specific than the others, whole cell lysate being the least. Whole cell means they used the whole bacteria and all proteins contained within it meaning a reaction has a higher chance of happening for things that aren't borrelia-specific whereas the other ELISAs use purified borrelia proteins reducing the likelihood of cross-reactivity from viruses and other bacteria. It appears to me doctors don't really discriminate between this and just treat an ELISA as they are told to treat an ELISA even though an ELISA is just a lab technique and says nothing about the accuracy of the test. Then they rely on western blot. I had a positive VlsE/pepc10 and a totally negative western blot. a year later many of my WB bands lit up. It is not uncommon for early tests to be negative and even the lab report will often say that. At this point you might want to get tested again
Posted 2/2/2017 2:45 PM (GMT 0)
Hi Fembot,
Welcome to our community! I'm so glad you found us.

The problem with the current testing is that it depends on a well functioning immune system, but the Lyme bacteria lowers the immune function, so we can't produce enough antibodies to any blood test to prove we have Lyme disease! Many have to have some treatment before they can produce a positive test. For me it was a full year of treatments before I could produce a fully CDC positive test.

Your symptoms and reaction to the abx (antibiotics) shows that you likely have Lyme disease though, so I would agree with those that are saying that you should go to a LLMD.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, 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 may 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 see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals

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 www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) 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 2/2/2017 4:24 PM (GMT 0)

Psilociraptor said...
Does it say on your ELISA whether it was whole cell lysate? C6? VlsE/pepc10? There are different types of ELISAs, some more specific than the others, whole cell lysate being the least. Whole cell means they used the whole bacteria and all proteins contained within it meaning a reaction has a higher chance of happening for things that aren't borrelia-specific whereas the other ELISAs use purified borrelia proteins reducing the likelihood of cross-reactivity from viruses and other bacteria. It appears to me doctors don't really discriminate between this and just treat an ELISA as they are told to treat an ELISA even though an ELISA is just a lab technique and says nothing about the accuracy of the test. Then they rely on western blot. I had a positive VlsE/pepc10 and a totally negative western blot. a year later many of my WB bands lit up. It is not uncommon for early tests to be negative and even the lab report will often say that. At this point you might want to get tested again

Wow! I had no idea about this. Thank you so much for explaining.

In regards to c6 peptide antibody Elisa for BB, would you consider that specific?
Posted 2/2/2017 7:32 PM (GMT 0)
Welcome. I just wanted to note that there are other testing venues that are becoming popular on this forum, especially with members who had negative or indeterminate results from Igenex. These other venues are DNA Connexions and Advanced Lab.

DNA Connexions in my opinion is a cost-wise bargain because they also test for co-infections as part of the standard test. Yes, lyme doesn't typically travel alone.
Posted 2/2/2017 10:22 PM (GMT 0)
K07 you should look into it. My understanding is VlsE/pepc10 is specific (some say as much as WB) and as sensitive as C6. But I didn't dive deep. I got the premise and the underlying theory. I don't screw with statistics and getting into researching conflicts of interest for each paper. So I can't give you a depth analysis of the quality of those studies. This one says C6 is 91% specific

http://www.abstractsonline.com/Plan/ViewAbstract.aspx?mid=3475&sKey=faa9a513-6469-4c3c-a7b4-b55a24d41526&cKey=ef8df718-ca1e-4849-ab7d-bca98511d5df&mKey=673511f0-c86b-432f-a387-058032b8500b
Posted 4/3/2017 10:08 PM (GMT 0)
I forgot I posted here. My tests were done through bio reference and imugen. [url] http://www.imugen.com/ [url]
Posted 4/3/2017 10:23 PM (GMT 0)
Did you think about getting an llmd? I see your email address on your profile isn't available to us yet to help you find a Lyme literate doc near you.
Posted 4/3/2017 11:05 PM (GMT 0)
Welcome Fembot! So glad you found us! We are a caring community that can answer many of your questions!
Posted 4/4/2017 5:40 PM (GMT 0)
Girlie or anyone watching. How would 500mg of Cipro x 5 days compare to 200 mg of doxy? I feel like I am making micro strides on the doxy compared to Cipro. I don't want to go back on Cipro anyway but I'm just curious what other ppl think.
Posted 4/4/2017 7:25 PM (GMT 0)
Cipro is known to be effective for bartonella...if you're willing to accept the risks - these are black box warnings by the FDA (tendon rupture and peripheral neuropathy)

The dose that I have seen for cipro is 500 mg twice daily - combined with mino, doxy or bactrim.
Posted 4/7/2017 3:03 AM (GMT 0)
I've been on doxy for 2 weeks now and I can't sleep and I'm getting headaches. Is this normal?
Posted 4/7/2017 3:47 AM (GMT 0)
Doxy will make 200% more lyme cysts ...ya it "normal /www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

doxy alone wont cut it and doesnt treat coinfections ...the cipro may have hit bartonella but carries risks of being floxed ....neither will get babs ...
Posted 4/7/2017 10:14 AM (GMT 0)
Interesting. My doctor prescribed Cipro last year for a kidney infection. Now that I think of it, a couple of weeks later my symptoms of neuropathy in hands and feet began. Does that neuropathy eventually heal or is it a permanent memento? Since taking measures to heal my body through supplements and diet a few months ago, I would say it has diminished, but is it just suppressed? I am so upset learning that this is a side effect 😖. Thanks for reading.
Posted 4/7/2017 4:16 PM (GMT 0)
For nearly everyone, the neuropathy does heal in time.
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