Help understanding active versus past exposure

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CherryBlossom
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 4/19/2018 4:34 PM (GMT -6)   
A few things to note:
- I would have been exposed to Lyme 15 years ago.
- I never received treatment (rash was explained as ring worm and my host of other issues were chalked up to all sorts of things).
- Rash was eventually biopsied for ring worm- came back negative. (Dermatologist said that I had a higher chance of winning the lottery and being struck by lightning simultaneously in order to have Lyme).
- Today, I still have that red expanding rash (new doctor informed me that it looks like the Lyme rash)
- Recently, have had stress fractures (MRI revealed that all the bones in both legs had hairline fractures), low vitamin D levels, carpal tunnel, and pain in my joints. Particularly, my knees.
- The rash, low vitamin D, and my fear of being active due to the issues in the my bones/joints led me to an infectious disease doctor.
- I received the labs back a few days ago. IgG positive for 6 bands. IgM negative. PCR blood test negative.

The stand-in doctor (mine is on vacation) called to inform me that it is a past infection and I don't have it anymore. I was very confused by that statement. She said because IgM and PCR are negative that I do not have it any longer. A) I still have a rash that expands this very minute B) my bone issues within the last several years have increased along with night sweats and several other symptoms C) If someone were to have late stage Lyme or chronic Lyme (and correct me if I'm wrong please!) wouldn't they not test positive for either the PCR (bacteria has moved on to other things and is not in blood) or the IgM since it is late stage and those antibodies would have been long gone. I should be an active person but it feels like I am in a body 50 years older than my own.

If someone can give me an explanation to this, that would be great. I'd like to be somewhat prepared for my doctor's appointment and my biggest fear is that I will continue to go untreated and some of my symptoms get worse. Any help/clarification would be appreciated!!!

Girlie
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Date Joined May 2014
Total Posts : 33939
   Posted 4/19/2018 4:53 PM (GMT -6)   
Hi CherryBlossom, welcome!


Since you had and still have the bullseye rash, i would go to a LLMD (if you're wanting the antibiotic treatment) for an evaluation.

No, people who have had long-standing infection can still have IgM positive and IgG negative. The thought is it represents a continual reactivation. I was IgM positive after 14 months of symptoms.

But the IgG positive and IgM negative - doesn't rule out active lyme disease.

PCR can still be detected in older infections...but if it's negative..it doesn't mean you don't have it...the sample that was used just didn't have any dna of the bacteria in it.

LD should always be a clinical diagnosis, with testing to back it up.

You have EM, plus symptoms...and IgG positive WB.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

CherryBlossom
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 4/19/2018 5:25 PM (GMT -6)   
Thanks Girlie. One more follow up question. Referencing what you stated, will the Western Blot test results depend on when the blood sample is taken? If there are reactivation stages will that come and go as the IgM gets converted to IgG and back again in a cyclical manner? Or does it not work that way? I hope that makes sense.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/19/2018 5:48 PM (GMT -6)   
I don't know that the IgM converts to IgG and back again....when I read about it...it just stated a continual reactivation. (IgM).

You have positive bands on the IgG but didn't get appropriate treatment. It would have been IgM at one point...but since you weren't treated...you still have the bacteria in your system....enough to cause symptoms.

Basically - you could be completely negative on the IgM and the IgG but you have a bullseye rash and symptoms...that represents an active infection. That's all you need, really.
The testing is fallible.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 4/19/2018 7:09 PM (GMT -6)   
Your doctor is a loonie. IgG CAN be past infection, doesn't mean it is. The fact that you don't have IgM is probably because this was 15 years ago and your body stopped treating it like an acute infection. Borrelia does not clear without treatment though. That is hardly debated anymore. 6 bands is more than you need to be positive and without past treatment you have Lyme disease period. Doctors really like to play down this disease but this is not your annual sniffles or plague illness that hops from host to host in rapid succession leaving you to either get better or die. This is a disease that is transmitted rarely (by comparison). It HAS to hunker down and wait for the next tick bite which could take months or years. It's a disease that has perfected the art of chronic infection. Scientists are now debating whether it persists after treatment. In the absence of treatment is practically settled.

As for PCR. Pcr is not used by most labs for a reason as this bacteria tends to locate in deep tissues and only transiently be in the blood. I believe there are also factors in the blood that can inhibit PCR though I haven't read into that too far. Nonetheless, nobody considers it a gold standard for this disease

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/19/2018 7:16 PM (GMT -6)   
Just to clarify - you said IgM negative - were you talking about the overall result - were there no bands + on the IgM?

(I’m just curious )
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

CherryBlossom
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 4/19/2018 10:17 PM (GMT -6)   
There were no bands on the IgM. Completely negative on that front. This is my first time getting tested and it wasn’t tested at a lab like igenex. I’m not too familiar with any of this- so don’t know if that might make a difference or if I should look into getting retested.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/19/2018 10:58 PM (GMT -6)   
CherryBlossom said...
There were no bands on the IgM. Completely negative on that front. This is my first time getting tested and it wasn’t tested at a lab like igenex. I’m not too familiar with any of this- so don’t know if that might make a difference or if I should look into getting retested.


Oh - not Igenex -
Yes testing with a lab that specializes in tickborne disease testing is preferred. Generally More bands tested and tests are more sensitive.
If a positive test is important to you - then think about getting the Igenex Lyme WB IgM and IgG - total cost is $250.
It’s not a lot of $$ really to spend.
Do you have a Dr willing to sign the lab req?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 4/20/2018 10:41 AM (GMT -6)   
I would honestly recommend not getting the Igenex. Igenex results are not respected by most conventional doctors because they don't conform to the standard protocol. If your doctor doesn't believe 6 IgG bands, joint pain, expanding rash is relevant for a person who hasn't been treated, you just need to find a new doctor period. There is literally nothing controversial about your case and Igenex results will not help you get anywhere with this doc. You are textbook positive. Igenex is best suited for people who are not positive by standard criteria and feel that alternative methods may be more sensitive. There are plenty of arguments we can talk about for standard testing, but fact is if you're positive by a mainstream lab consider yourself lucky. You fit into their little exclusive box. There's nothing debatable about those results and any dismissal of them is just another egregious example of the pressure to downplay this illness.

Here's how it works simply. IgM antibodies are triggered early in infection for pathogens that your body has not seen before. They are not very specific to what they bind. In other words, this is what your body does when it hasn't crafted a more specific response. The pro is that it recognizes a wider range of pathogens. The con is that a positive IgM test may often be false positive because those antibodies are not specifically crafted for Lyme disease. Another pathogen is likely to trigger the same antibodies to be released. After a few weeks your body undergoes isotype switching. In other words, it spends those few weeks developing highly specific IgG antibodies that bind very strongly to the specific pathogen and uses these preferentially over IgM. As the infection continues it continues to perfect these antibodies by selecting increasingly specific antibodies. It no longer needs IgM for this infection after about a month when IgG antibodies are highly developed. In future Lyme infections your body will preferentially respond with highly specific IgG instead of IgM which it has stored in memory B-cells. At this point these IgG antibodies still can cross-react to related pathogens and give a false positive, but it is much less likely. And this is why they require 5+ bands. The more bands, the more likely they are Lyme specific.

So as you can see IgG does not indicate "past" infection. It indicates that you were not recently exposed, but that infection may be ongoing and your body is continuing to fight it with IgG. In real-world scenarios IgM MAY be positive even in late infection. Pathogens can mutate and this may simulate "new infection". But IgM is not the optimal test. Look at the CDC website. See how they say after 30 days your doc should only look at the IgG? That's because IgM is not as specific of a test (has a higher rate of false positives) and is just an extra expense for the healthcare system. It is primarily used in early illness when IgG is not present and failure to treat has bad outcomes.

https://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/index.html

Now... if your IgG did not have 6 bands I would argue that IgM might be useful. This is not meant to downplay the IgM test. It's just that positive IgG is sufficient enough.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 4/20/2018 10:46 AM (GMT -6)   
And back to the question at hand... now that we have settled that IgG doesn't mean "past infection", just "not recently acquired infection"... how can we tell if yours is past or ongoing? Untreated Lyme is chronic, period. Lyme establishes chronic infection in immunocompetent host. You would be the exception, not the rule, if your immune system cleared it. Given your symptoms I think we have a pretty clear picture of whether you are that exception or not...

Infections can be acute or chronic and this is largely driven by evolutionary pressure. A pathogen that transmits very frequently (influenza) doesn't need to persist long term in order to stay viable. Pathogens that don't transmit frequently often need to persist long term to stay viable. There are some that straddle the line and may become chronic depending on the immune status of the host. This is not the case with Lyme. Saying you had "past exposure to Lyme and cleared it" is like saying "i caught some HIV sleezing around thailand but I got better after some rest". These are not those kinds of infections. They don't go away on their own. Their survival depends on that fact

I'm sorry for this wall of text. I've chosen this to be my dedicated morning coffee ramble as I hate that kind of pseudoscientific BS some doctors push on their patients.

Post Edited (Psilociraptor) : 4/20/2018 9:55:10 AM (GMT-6)


CherryBlossom
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 4/23/2018 11:21 AM (GMT -6)   
Psilociraptor- thanks so much for the detailed response. Really helpful information to have in going forward in what I'm just beginning to understand is a complicated and misunderstood disease. Appreciate all the help! Thanks.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 4/23/2018 11:50 AM (GMT -6)   
Cherryblossom,

I saw your post before and waited to respond as I knew others would have better information and explanations for your specific questions. Welcome to the forum! I love your name. So pretty.

I wanted to comment on my impression of your symptoms. You mentioned stress fractures, carpel tunnel, and joint pain. Bartonella is one of the common coinfections that frequently accompanies Lyme. Bartonella affects the bones and joints, too.

Since you're just starting to look into this, I feel it's very important to point out coinfections. Babesia is another common coinfection. The treatment for Lyme will not be enough to fully treat those coinfections if they are present. Just want you to be aware of that so you can look into those things.

If you treat with antibiotics, you will have the best chance with a good LLMD (Lyme literate medical doctor).

If treatment with antibiotics does not appeal to you, there are other options including numerous herbal protocols.

Please ask all the questions you can think of and keep coming back for encouragement, support, and to learn more. There's a wealth of information and some very intelligent members on this forum.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 4/24/2018 12:13 AM (GMT -6)   
CherryBlossom said...
Psilociraptor- thanks so much for the detailed response. Really helpful information to have in going forward in what I'm just beginning to understand is a complicated and misunderstood disease. Appreciate all the help! Thanks.


Not a problem. In reality it's not all that complicated, or at least shouldn't be for a doc. Your initial questions show you already have a better grasp of basic concepts which is disturbing to say the least. This is not even the controversial stuff. This is textbook immunology. Textbook Lyme disease. I don't know what it is about this disease, but it makes professionals go poo-poo brained. IgG positive, expanding rash, joint pains... holy crap. This is what 15+ years of higher education gets you...

That said I don't know about the fractures. That's not exactly textbook but a connection wouldn't surprise me either. Might be related or maybe only peripherally. Either way it doesn't negate everything else. EM is pathognomonic for Lyme disease, IgG is CDC positive, and chronic joint pains are one of the most characteristic symptoms of late stage Lyme

Post Edited (Psilociraptor) : 4/23/2018 11:18:41 PM (GMT-6)

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