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very basic question about Lyme tests

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Posted 1/25/2018 5:53 PM (GMT 0)
I posted earlier that I had gone to see Dr. G in Basking Ridge -- that I chose her because she is a rheumatologist, and because I just wanted some clarification as to whether I'm dealing with Lyme or an actual autoimmune disorder.

She left me a message saying that my Lyme test was positive, with 3 IgM bands -- 41, 31, and 23. However, when I tried to Google what this meant, the first thing that came up was a CDC website saying that a positive IgM is probably a false positive if (i) the IgG test is negative and (ii) you've been sick longer than 4-6 weeks.

Can anyone explain why this is or isn't correct? Or direct me to some reliable source so that I can make sense of this?

I know there's a lot of controversy over what actually constitutes a positive Lyme test. For a long time, I accepted that I had Lyme and some coinfection, because a couple of doctors said that my tests indicated Lyme (even though they weren't positive by CDC standards). In a way, this was a relief (even though no one wants to have Lyme) because it gave me hope that maybe I didn't have some terrible progressive autoimmune disorder.

But because my symptoms have recently gotten much worse -- and because they look a lot like classic rheumatoid arthritis symptoms -- I've started to doubt the Lyme diagnosis, and have been fearing that I should resign myself to a terrible autoimmune diagnosis. I thought that these test results would give me clarification, but I feel just as confused as before.
Posted 1/25/2018 6:05 PM (GMT 0)
Hi Lily Panda,
Although it's a basic question, the answer is not. LOL.

With your positives though, it's not a question IF you have Lyme - take a look:
Band 23 indicates OspC, with is an outer surface protein for Lyme that is highly specific - meaning that nothing else will reproduce that specific band to be positive.

Band 31 indicates OspA, and like OspC, is highly specific to Lyme.

Band 41 is a bit different, as it can be caused by other spirochetal infections, but those are fairly easy to rule out. Syphilis, Pintas, Yaws or Lyme disease are the infections that cause this band to be reactive.

So, why doesn't the CDC recognize this? Well, there's a million theories out there, but the fact is they don't. They do tell us that we may need MANY tests before we will get the positive Lyme tests as they see it -but they won't fund research to have more sensitive tests either, nor do they fund any research to help find good, effective treatments. Nearly everyone that discovers this asks why, but so far, there are no answers to these types of questions.

I don't know if it will help, but I have had workups for RA myself, because my fingers and toes are twisted and bent - and yet I don't have any 'markers' in my blood for any arthritis at all.

Lyme is called the "New Great Imitator" (the first being it's 'cousin', syphilis) because it imitates all kinds of other diseases, and if a doctor is not aware that Lyme (especially when combined with the other tick-borne infections) can present like that, then these infections won't be part of their consideration.

I do hope that helps some???
Posted 1/25/2018 6:06 PM (GMT 0)
Oops. I meant to share this article too: danielcameronmd.com/misdiagnosing-lyme-disease/
Posted 1/25/2018 6:49 PM (GMT 0)
Traveler, thank you so much for your post and for the link to the article. Both are very helpful.

Although my ANA is consistently positive (at a low level), I've also tested negative for all the specific autoimmune markers they've checked for. (They've tested me for rheumatoid arthritis, Sjogren's syndrome, scleroderma, and maybe other things too.) But my rheumatologist says that a fair number of people with these disorders may never test positive.

I wonder if some of these "seronegative" cases of rheumatoid arthritis, etc., are actually people with undiagnosed Lyme. (My rheumatologist, on the other hand, thinks a lot of people with chronic Lyme are actually people with undiagnosed autoimmune disorders.)

Do you feel that Lyme treatment made any difference in your fingers? Or do you think that too much damage had been done already by the time you were treated for Lyme?

Thank you again.
Posted 1/25/2018 7:14 PM (GMT 0)
Dr. J wrote about this on his website.

He says that Lyme is different than most diseases - which seroconvert from Igm to IgG within weeks.
Lyme can continue to produce IgM antibodies for months to years.

"In virtually all infections, the IgM class of antibody (immunoglobulin) appears first and therefore represents a marker for an early infection. In most immune models, the IgM antibody gives way to the well-known IgG antibody class, usually regarded as the major enduring antibody response in chronic infectious diseases or other immune models. In almost all infection models, after just a few weeks, the IgM antibody level wanes to the point of being non-detectable and does not recur. However, a confounding fact in Bb infections is that the IgM antibody may persist for years, a very unusual situation in most disease states. Logically, one would have to conclude that this reflects an ongoing reactivation or persisting and continually renewing infectious state of Bb infection. Most active diagnostic laboratories involved with LD tend to agree with this notion. Therefore, the Jemsek Specialty Clinic acknowledges that a persistently positive IgM antibody response may qualify as laboratory confirmation for an active LD case. As discussed below, this most likely will be a Western Blot test. The presence of either a positive IgG ELISA or a positive IgG Western Blot test does not confirm active disease, and may only signify dormant or inactive (suppressed) infection."

jemsekspecialty.com/laboratory-testing-for-lyme-disease/
Posted 1/25/2018 7:19 PM (GMT 0)
Girlie, that's extremely interesting. Thank you. If correct (and it does make sense), it does explain the confusion.
Posted 1/25/2018 7:36 PM (GMT 0)

LilyPanda said...
Traveler, thank you so much for your post and for the link to the article. Both are very helpful.

Although my ANA is consistently positive (at a low level), I've also tested negative for all the specific autoimmune markers they've checked for. (They've tested me for rheumatoid arthritis, Sjogren's syndrome, scleroderma, and maybe other things too.) But my rheumatologist says that a fair number of people with these disorders may never test positive.

I wonder if some of these "seronegative" cases of rheumatoid arthritis, etc., are actually people with undiagnosed Lyme. (My rheumatologist, on the other hand, thinks a lot of people with chronic Lyme are actually people with undiagnosed autoimmune disorders.)

Do you feel that Lyme treatment made any difference in your fingers? Or do you think that too much damage had been done already by the time you were treated for Lyme?

Thank you again.

Yes, I have had some relief with my fingers and feet with treatments - although since the bone spurs occur due to damage, they are still there. My question was 'what did I do to damage them?' LOL. But, it can be from someone that just works with their hands and stresses the tendons too much too, which perfectly describes me all too much.

Girlie posted a very important point about the testing - and explains why so many non Lyme literate doctors just don't understand and won't consider these infections when they should. No, not everyone with an autoimmune issue has Lyme - but just how many really do???

With your test results, I wouldn't question having Lyme. The thing is, if left untreated, it can most definitely progress into a full blown auto immune issue - but you are in treatments, so I wouldn't worry about that, unless you see signs of that happening from tests, or other symptoms.

This is why, once I knew for sure that I did have these infections, I've forgone any additional testing. The doctors that do the other testing (Rheumy's, Neuro's and others) don't understand what they are looking at when they have a Lyme patient sitting in front of them (because they don't ever 'see' Lyme, but the other issues), and I can't get to a LLMD - even if I had the money to do all the testing my heart desired. And it would be a lot! I have LOTS of questions! LOL!
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