Jump to content

Menu

Lyme and other Tick Borne Disease - appropriate tests


Soror
 Share

Recommended Posts

I'm considering finally testing for lyme disease. I live in the woods and have had hundreds of tick bites in my life, it is just a matter of course. I've not noticed a bulls-eye rash but do remember an especially bad one(got stuck in me) a couple of years ago that left a red spot- of course, that could have just been from the irritation of being stuck of course. I have thyroid disease and have had a hell of a time getting and staying optimal. As soon as I think I'm optimal something happens, which throws me out of whack. I'm wondering if I should rule out Lyme as a contributing factor. Where do I go for info? What are the right tests? I was thinking it was some special test for Lyme, I can get blood testing done for free but any other I have to pay for and from what I've heard it is expensive. 

Link to comment
Share on other sites

I'm considering finally testing for lyme disease. I live in the woods and have had hundreds of tick bites in my life, it is just a matter of course. I've not noticed a bulls-eye rash but do remember an especially bad one(got stuck in me) a couple of years ago that left a red spot- of course, that could have just been from the irritation of being stuck of course. I have thyroid disease and have had a hell of a time getting and staying optimal. As soon as I think I'm optimal something happens, which throws me out of whack. I'm wondering if I should rule out Lyme as a contributing factor. Where do I go for info? What are the right tests? I was thinking it was some special test for Lyme, I can get blood testing done for free but any other I have to pay for and from what I've heard it is expensive. 

 

I will just say that the blood tests are extremely unreliable due to a high false-positive rate.

 

I always recommend the excellent documentary "Under Our Skin" as a starting point for learning about chronic Lyme disease.  It covers the range of potential issues with the disease as well as a lot of the controversy involved.  The movie is available on both Amazon and Youtube.  If you have prime, you should be able to watch it for free with an free trial of an add-on subscription.

 

Good luck figuring out what is going on.  Both Lyme and thyroid issues are hard to pin down IME.

 

  • Like 1
Link to comment
Share on other sites

I got Lyme this summer. Classic bulls-eye got me immediate prescription of Doxy (I think I got 20 days). Here they measure IgM and IgG levels in a blood test. One shows the presence of the bacteria, and the other shows how your body is building antibodies to the bacteria (I think?). Anyways, the initial blood test was positive for Lyme, the two-month follow-up shows that my body is making it go away.

 

That's the blood test results for Lyme. But I've been feeling more and more crappy ever since then. I gave lots more blood to scientists last week to try to rule out other things. 

 

I haven't heard of special tests. IDK, my doctor was open-minded about checking for low levels of B12 and D (even though I don't have initial indications in my CBC that that's the problem), but I don't know how open minded she would be about considering chronic lyme.

 

 

  • Like 1
Link to comment
Share on other sites

 

 

Great article about testing from one of my most trusted resources.

http://lymemd.blogspot.com/2016/11/lyme-disease-tests-new-and-old.html

 

Thanks!  That's an outstanding article containing detailed, up-to-date information!

 

Here's a quote from the article which gives a flavor of what you face when trying to detect Lyme disease using laboratory tests:

 

Let’s then address the Nanotrap test, the new kid on the block.  I haven’t liked the test – but that is about to change. This is a urine test which captures tiny amounts of proteins found on the surface of the Lyme bacteria. The test has been using only one protein: outer surface protein A, or OspA.  This protein corresponds with the 31 band of the Western Blot.  Remember, Lyme is a clever “shape shifter.†This protein is expressed when the spirochete is attached to the gut of the tick. After infection, this protein disappears (downregulated) and Osp C (upregulated) takes its place. So, the current test is really only helpful for acute Lyme and -- maybe late-stage Lyme. After many months of infection, this protein (OspA) may reappear.

Now I know more. When scientists (Center for Applied Proteonomics and Molecular Medicine, George Mason University) started working on the test they were incredulous (blown away) that the so-called experts in the field insisted that chronic Lyme is not real. To prove the concept of the test, and to get the blessing of the IDSA, ILADS and the CDC, the new test was designed to detect acute Lyme. The CDC admits that current testing (two tier test) for acute Lyme is flawed, and THERE IS AN X-PRIZE) award for the first lab to develop an accurate acute Lyme test!  Usually acute Lyme is easy to diagnose, but the test as it stands, may be useful for poorly informed doctors on the frontline.

 

  • Like 2
Link to comment
Share on other sites

Thank you to everyone for the input.

 

I hope you get some answers Sarah.

Great article about testing from one of my most trusted resources.

http://lymemd.blogspot.com/2016/11/lyme-disease-tests-new-and-old.html

I read this and various other articles on his blog. I still don't quite wrap my brain around it, like any of these things there is a new language to learn. My take away is that it is hard to test for- which I'd already gathered! As I'm understanding from this guy the CDC standard is ELISA positive followed by Western Blot, however due to the inaccuracies of ELISA he advocates just going for Western Blot, although it seems this is not a simple positive or not, they are looking for a number of certain "bands" to be positive and not all tests will test the right ones or even give you detailed results. I've heard the name Igenx thrown around for Lyme tests but it seems it is controversial. What I still didn't gather from that source was who to go through for the Western Blot.

 

Am I on the right track? Any suggestions for the where to test? My usual lab is Quest and it doesn't seem that they offer a good Lyme's test from what I've read. I do have a functional med. dr who will generally order whatever tests I ask(and I have plenty of indications that it might be a possibility) but before I go down that road and pay out of pocket I want to make sure it is the right test.

Edited by soror
  • Like 1
Link to comment
Share on other sites

As I'm understanding from this guy the CDC standard is ELISA positive followed by Western Blot, however due to the inaccuracies of ELISA he advocates just going for Western Blot, although it seems this is not a simple positive or not, they are looking for a number of certain "bands" to be positive and not all tests will test the right ones or even give you detailed results.

He does, but ONLY if the clinical diagnosis is ambiguous:

We depend on clinical diagnosis. But sometimes we are not sure.

I've heard the name Igenx thrown around for Lyme tests but it seems it is controversial.

It is controversial, but it seems to me that some of the controversy around Igenx is just part-and-parcel of the whole Lyme controversy (but certainly not all of it).

 

We had a strong chronic Lyme diagnosis for our son based on the clinical diagnosis from a Lyme-literate physician (actually, from the PA who worked for him). Still, we wanted to see what the lab results looked like. They agreed to write prescriptions for BOTH Quest Western blot tests and for Igenx. The results that came back were not too surprising: Western blot from Quest was negative while Igenx read some indications of a Lyme infection in some of the bands.

Am I on the right track? Any suggestions for the where to test? My usual lab is Quest and it doesn't seem that they offer a good Lyme's test from what I've read. I do have a functional med. dr who will generally order whatever tests I ask(and I have plenty of indications that it might be a possibility) but before I go down that road and pay out of pocket I want to make sure it is the right test.

I think you are on the right track, since you are asking all the right questions.

 

That said, the problem with a test that has a high false-negative rate like the Westen blot can be summarized by the following question: "If I get a negative result, do I have Lyme or don't I?" The simple answer is that you won't know. Only if you get a positive result can you have some level of assurance. Unfortunately, getting a positive result on the Western blot is unlikely since you do not appear to have acute Lyme disease.

 

Best of luck with this. I wish there were better answers out there for you and many others who might (or may not) be suffering from Lyme disease.

  • Like 1
Link to comment
Share on other sites

He does, but ONLY if the clinical diagnosis is ambiguous:

It is controversial, but it seems to me that some of the controversy around Igenx is just part-and-parcel of the whole Lyme controversy (but certainly not all of it).

 

We had a strong chronic Lyme diagnosis for our son based on the clinical diagnosis from a Lyme-literate physician (actually, from the PA who worked for him). Still, we wanted to see what the lab results looked like. They agreed to write prescriptions for BOTH Quest Western blot tests and for Igenx. The results that came back were not too surprising: Western blot from Quest was negative while Igenx read some indications of a Lyme infection in some of the bands.I think you are on the right track, since you are asking all the right questions.

 

That said, the problem with a test that has a high false-negative rate like the Westen blot can be summarized by the following question: "If I get a negative result, do I have Lyme or don't I?" The simple answer is that you won't know. Only if you get a positive result can you have some level of assurance. Unfortunately, getting a positive result on the Western blot is unlikely since you do not appear to have acute Lyme disease.

 

Best of luck with this. I wish there were better answers out there for you and many others who might (or may not) be suffering from Lyme disease.

I dont know what to think of it all, really. I mean, I have other issues so the question has always been is this just explained by these things or is there some other piece to the puzzle. I've tried to approach it by thinking it as simple as possible but simple isn't always possible. I think I'll talk to my FM next appt.

 

Cheezits! I looked up the price, the most current price I can find is $300 for the basic panel and $600 for the more complete panel. Gah. 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...