Making Sense of Test Results... And what to do next?

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TexanInNorway
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/14/2017 11:11 AM (GMT -7)   
Hi all -

This is my first post here on Healing Well, though I have been lurking for quite some time now... smilewinkgrin Members here all seem so helpful, and I am hoping you guys can help me. Apologies for the length of this; I have tried to split it up into my test history and specific questions to make it a bit more readable.

Some background: My story is similar to many others. I am currently living in Norway, so my access to LLMDs has been challenging. (Any help with that is welcome!) My GP says he cannot rule out Lyme but also cannot confirm it. As of today, I have fatigue, tingling legs, and minor joint pain. Sometimes these symptoms go away for a few weeks, and I feel pretty good... then they come back for no identifiable reason. My GP wants to wait to see if the leg symptoms go away with rest, and if not, plans to refer me to an ID specialist. For me, this is a big improvement when compared to my previous GP who told me that I was depressed, was making it up, etc.

Testing History:
  • Oct '16 in Norway: Blood test IgM+/IgG- for Borrelia (first test)
    --> 2 weeks of ABX; no memory of tick or EM rash; no recent outdoor activity but am often around horses
  • Dec '16 in USA: Negative for Lyme from total antibody test (Lyme Disease Ab with Reflex to Blot (IgG, IgM)) through Clinical Pathology Labs via AnyBloodTestNow
  • Dec '16 in USA: iSpotLyme test --> positive for Lyme based on positive IFN-gamma Secretion (DbpA, OspC, p100, VlsE-1)
  • Mid Sept '17 in Norway: Blood test IgM+/IgG- for Borrelia, again.
    --> Originally searching for cause of UTI-like discomfort, so this came as a surprise. Results came after I was already feeling better, so we agreed to retest in a few weeks. Began feeling fatigued again shortly after this appt.
  • Late Oct '17 in Norway: Blood test IgM+/IgG- for Borrelia, still.
    --> GP is unsure why it hasn't transferred from IgM to IgG. I've been told to wait and rest to see if leg symptoms go away.
My questions are:
  • What are the tests called that I am getting from GP in Norway (the Borrelia blood tests for IgM/IgG)?
    Is this an ImmunoBlot? My test results do not have "bands" on them; I only receive a number in units of AU/mL.

  • What does it mean that I have an ongoing positive IgM for Borrelia but always test negative for IgG?
    Is it possible that the IgM is a false positive for something else, like Epstein Barr or mycoplasma pneumoniae?
    Is there a reason why I may not be developing immunity (IgG)?

  • Was the test from Dec '17 an ELISA test?
    Link to test description on Quest website

  • Can anyone explain what the iSpotLyme test was actually testing (IFN-gamma Secretion (DbpA, OspC, p100, VlsE-1))?
    From their website, it is my understanding that a positive means a current or recent infection but cannot differentiate if it is still active.
I have additional medical history (possible co-infections) that I have left out of this post - but can share if it helps, just ask. As an FYI - I am familiar with and have implemented many of the suggested Lyme diet and lifestyle changes during the past year. I have not tried any official protocols (herbal or otherwise), mostly because I have not felt comfortable doing it without professional help and also am a bit in denial about whether I have LD, given confusing test results.

So - any insight as to what the existing tests mean would be very helpful. smile I am also looking for input on how to proceed: what questions should I be asking my GP, what other tests should I be asking for, what resources can I access while in Norway, etc?

Thanks in advance!

K

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6046
   Posted 11/14/2017 12:51 PM (GMT -7)   
Hi K -

An official welcome to the forum! I'm sorry you're here but glad you found us and have been "lurking" and implementing initial steps towards healing.

Testing
I can't answer all your really good questions about the tests - hopefully others will be along to help with that. I'm posting a couple of resources that might be helpful.

But generally, you're likely being tested with an ELISA test, which is a serology test that doesn't look for the Borrelia burgdorferi (Bb or Lyme) microbe but it looks for the immune system's response to it. Generally, MDs are to follow up an ELISA test with a Western Blot to confirm positives (a Lyme specialist will follow up a negative ELISA with a Western Blot as well because the ELISA is notoriously unreliable with 50% false negative). The Western Blot indicates specific responses to Lyme DNA.

Good testing info:
www.betterhealthguy.com/lyme/testing

Clinical diagnosis
So, the test could be developing a response to something else but it's very unlikely. The CDC recommends that Lyme be diagnosed clinically, and that MDs don't use only the tests for diagnosis - so this is the second thing your MD hasn't done to properly diagnose you.
- The MD is to also consider your exposure (and while seeing an imbedded tick and/or a classic bullseye rash would be slam dunks, working around horses provides a lot of exposure, unfortunately).
- The MD is also to evaluate your sx and you certainly have suspicious sx.

1 + 1 + 1 = Lyme.

Here is the CDC's recommendation not to use only testing for diagnosis:

"Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement."
www.cdc.gov/lyme/stats/survfaq.html

IgM vs IgG
The standard antibody response is for the IgM antibodies to evolve into IgG. Unfortunately, with Lyme all the rules go by the wayside. If the Bb microbe can evade and disable the immune response as has been shown in 200+ studies, it can certainly interfere with other typical immune functions and be preventing the antibodies from transitioning to to IgG. The odd thing is that your MD is using this as some indicator for the Lyme diagnosis --that doesn't make sense.

Next Steps

ID docs are a roadblock:
Generally, ID docs follow IDSA guidelines, which are geared toward the CDC's surveillance criteria for tracking a very specific manifestation (strain) of Lyme, not for diagnosing and treating all Lyme cases. So it's incredibly narrow in definition and response and without a CDC-positive WB and a lot of luck, you won't get far with an ID doc.

Lyme specialist:
You're better off finding a Lyme specialist and there might be someone in Norway - although I don't have any contacts. Maybe you can create a new thread with a request for suggestions for LLMD.

You might be able to find an LLMD who is willing to work with you and your GP to get you going on tx - here are a few resources:

Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's three 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​

​​Y​​ou 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​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: medicalinfo@tbdalliance.org

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) as well as many others believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme--they adhere dogmatically to the IDSA and very narrow definition of Lyme and limited treatment. 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

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt

Alternatives:
In the interim, we can help you with obtaining and using some good antimicrobial herbs to help you until you can get to a specialist - MANY people are here successfully using herbs, as you know. it could be a good interim approach for you.

Test yourself:
(the following info is for people in the US - not sure what challenges you might have since you're currently in Norway with shipping, etc.)
If you run into roadblocks, here is a site where you can order the WB on your own w/out a physician's order. Be sure to check for "draw locations" to make sure there is a lab near you.
http://www.truehealthlabs.com/Igenex-Lyme-Tests-s/1870.htm

Lyme Western Blot Test IgM
Regular Price: $310.00
Your Price: $179.00

Lyme Western Blot Test IgG
Regular Price: $310.00
Your Price: $179.00

And then you can post your results here and we can help you interpret the results (which are also skewed toward CDC's infectious diseases case definition criteria, not diagnosis but you probably already know that).

Support your clinical dx:
And here is a great resource to help you sort out your sx in order to be able to get direction on what coinfections might be present - you should share results w/ your MD:
Jernigan's symptom list -
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

I hope this is helpful! If not just keep asking q's -

-p

Post Edited (Pirouette) : 11/14/2017 12:57:01 PM (GMT-7)

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