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/testingClinical 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.htmlIgM 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.
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:
You 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
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
You can email the Tick-Borne Disease Alliance at: email@example.com
ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/
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
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.
(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.
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 -
Post Edited (Pirouette) : 11/14/2017 12:57:01 PM (GMT-7)