The reason for an ELISA first, then a western blot

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biscotta
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Date Joined Oct 2017
Total Posts : 7
   Posted 10/10/2017 4:12 PM (GMT -6)   
Hi all, I'm new around here. I saw on another thread:

Pirouette said...
I am still searching for a good source that effectively explains or debunks the purpose for the sequence [of the two-tier test], instead of going straight to the more specific WB.


I have a PhD in biochemistry, which is the field that invented Western blots and ELISAs, so I can shed a little bit of light on this topic in a general sense.

It makes a lot of sense, from the perspective of a scientist, to screen samples with a high-throughout method such as ELISA where you can test 96 or 384 samples at a time. It's cheaper, easier and faster. Western blots are slow and only allow you to test a small number of samples. This is the sole reason that tests like the ELISA were developed, to make testing cheaper and faster.

I have used a similar method to screen a large number of samples in a 96-well plate (not an ELISA but another biochemistry technique). If a sample is positive, you investigate it further with another test; if it's negative, you discard it. I don't know if there's a name for this, but it's common in any high-throughput screening. Usually the second test reveals more detailed information and is more accurate, but slower and more expensive.

Scientists have to economize, just as doctors/insurance companies do. As a grad student running each test by hand, I couldn't have spent the time and money to thoroughly test every sample. So I used an initial test to pinpoint which ones were worth looking into.

The problem with this approach is, it relies on that initial test to be accurate and appropriately sensitive. I'm sure you guys are aware that the Lyme ELISA is notorious for giving false negatives. I suspect this is an issue of the sensitivity thresholds they use. (I can expand on this if for anyone who's curious.)

As scientists, we have to make some assumptions in order to be able to do anything. We try to test out assumptions and make sure they are correct. Somehow, something went very wrong with the assumptions they made when they developed the ELISA, and they are just sticking to their guns on it anyway.

Unfortunately for all of us patients, the doctors who interpret these tests usually don't remember enough of their biochemistry lab class to understand that the border between positive and negative is somewhat subjective. Some scientist had to draw a line and say "This much color is positive; below that is negative," with the awareness that some level of false negatives and positives are going to occur. Deciding where to draw that line is complicated, especially with any antibody-based method because they're prone to noise (color showing up for no good reason).

But doctors are trained to interpret tests as black-or-white, because its easier to teach and to apply in practice. They aren't really educated in which tests are more fuzzy. They wouldn't necessarily ever apply that information in real life anyway, since insurance companies enforce black-or-white standards.

Anyway, sorry I'm not citing any sources on this, it's one of those things that is such common knowledge within biochemistry that it's a little difficult to cite. I could try digging into historical literature on the ELISA if anyone really, really needs a source for this general practice. But sources specific to the development of the Lyme ELISA may not exist in the literature.

Dahlias
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Date Joined Jun 2017
Total Posts : 91
   Posted 10/10/2017 4:56 PM (GMT -6)   
Very interesting! Thank you for sharing.

Girlie
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Date Joined May 2014
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   Posted 10/10/2017 5:38 PM (GMT -6)   
My Province (in Canada) uses the IFA for the screening tool. Mine was negative, so of course no WB was done.

A couple months later I tested Positive with Igenex IgM WB.

The thing is...when we're dealing with a devastating illness...they shouldn't be allowed to get away with NOT doing the WB....since the Elisa/IFA screening is not always accurate.

So, even though it's a cost- saver...that doesn't really explain why it's done when it's not reliable.
I can tell you that the money saved by not doing the WB is exceeded many times over by the costs of all the other tests/mri's/specialist appts. the patients are having when this comes back negative.
In the end it isn't saving money.

How do we get that across?
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

biscotta
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Date Joined Oct 2017
Total Posts : 7
   Posted 10/10/2017 7:04 PM (GMT -6)   
Yes Girlie, I completely agree that they shouldn't be using such a faulty screening tool. Just so you know I'm not advocating this method in the case of Lyme disease. I'm just trying to explain how it came about in the first place.

Girlie said...
So, even though it's a cost- saver...that doesn't really explain why it's done when it's not reliable.


But, someone has to prove that it is not reliable. To overturn a scientific opinion that has become accepted by the community, you need extremely strong evidence, and then others must replicate that evidence.

It is very difficult to produce such evidence in the current climate surrounding Lyme disease in the medical community. Pharma funding is nonexistent because it's not profitable. Government funding is largely guided by doctors who believe the IDSA. Our view, as patients, that the test gives a lot of false negatives, is completely not a factor in funding decisions. Even the view of LLMDs is not given much weight, because their evidence is not very strong.

Not like I'm criticizing the LLMDs. They do not have the means to run double-blind clinical trials on large numbers of patients. But that is the scale of evidence that will be needed to change the minds of the medical establishment. Even though the US recently funded a $800,000 grant for researchers that are sympathetic to chronic Lyme, the evidence produced will not be strong enough to dramatically change opinion. The entire premise of the study is based on patient self-reporting, which is flimsy evidence compared to a clinical trial. I'll also note that study is being run by mathematicians.

I know this sounds like I'm dismissive of that study. I'm not, I'm just saying that it isn't going to turn things around by itself. The best we can hope for is that it spurs more funding and more studies. But there's a reason that the only people who can get government funding for Lyme are not actually experts in infectious disease, and often are not even medical doctors.

I do believe that this deadlock can change, but I don't think I will live to see that day.

And I certainly don't expect to live to see any actual treatments developed through the medical establishment.

I can't speak to Canada's situation much, but I believe the IFA test is similar in principle (uses fluorescence instead of absorbance spectroscopy). I would not be at all surprised if Canadian testing is guided by the same studies that the US guidelines are, because those studies are seen as the most credible studies available in the world.

I don't think we can rely on the medical establishment to change anything. They are going to stick to their opinions until there is strong evidence to the contrary.

The only strides that I see being made are via patient advocacy groups and politicians. IDSA doctors are not beholden to the average citizen, but politicians are, to some extent. I haven't been keeping up with Lyme advocacy much but every now and then I'll hear about a bill getting through state legislatures to protect LLMDs, to improve insurance coverage, or even to improve diagnosis and treatment. That gives me some hope.

Psilociraptor
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Date Joined Jul 2016
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   Posted 10/10/2017 10:16 PM (GMT -6)   
Thanks for sharing! Always good to have more scientists on the forums. I was actually going to ask for citations on the false negatives until I read the end of your post. If you find any or wish to expand on the sensitivity thresholds or anything related to false negativity I'd be very interested to hear your perspective in detail. My gut has always told me the tests are questionable but it's been a hard position to substantiate with the available literature.

Girlie
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Date Joined May 2014
Total Posts : 26428
   Posted 10/10/2017 10:52 PM (GMT -6)   
biscotta - Yes, I realize that you are just explaining it...and not advocating it.

Yes, the IFA is similar to the ELISA.


Actually here in Canada, there is some action happening lately...we've got a good advocacy group working on a new framework...hopefully they will get somewhere.

BC seems to be the best Province for Dr's accepting a Lyme disease diagnosis..and supporting treatment.

I feel very fortunate that my own GP is supportive of my diagnosis.
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 10/11/2017 8:50 AM (GMT -6)   
Biscotta- I am so interested to ask you about your experience. Especially from a bio-chemist! I was recently diagnosed by an LLMD, but I am still skeptical.

I read one of your other posts about not improving from treatment.

Did you do a western blot? what were your bands?

I had igm 31 ind, 41 ind
igg 30+, 41+, 58++, 66+

igenex negative...

been treating for a couple months now. improving so far...

i hope you see this and appreciate your response.

Pirouette
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Date Joined Mar 2014
Total Posts : 5813
   Posted 10/11/2017 10:08 AM (GMT -6)   
Excellent post Biscotta -

Your delivery is VERY well-presented in lay terms, easy to understand. We highly value scientific voices on this forum, like Psilo mentioned. I'm not sure what brought you here but - welcome! There were a couple of great reports from the Institute of Medicine's conference on Lyme controversy held in 2010 that effectively explained the surveillance process, which is really what you're talking about and was very helpful for Lyme patients to learn. I only wish the medical community responsible for dx and tx Lyme was as knowledgeable...

Psilo -
Here is one study someone recently posted regarding false negatives - I have a few others bookmarked if you're interested:

/www.ncbi.nlm.nih.gov/pmc/articles/PMC5391870/

"False-negative results can impact diagnosis and treatment of LD, and this study indicates that for early-stage disease false-negative results are 66.8% for a single-stage test increasing to 74.9% for the two-tier test.

By comparison, HIV testing results in 1.4% false negatives for the worst-case single test and 0.095% false positives with sensitive tests used with a two-step methodology. LD testing in early-/acute-stage disease generated 56 times more false-negative test results than HIV testing, and when neurological/arthralgia symptoms were present, LD testing generated ~180 times more false-negative test results than the two-step HIV tests. "


Biscotta -

I'd like to clarify that statement as it was less about the actual ELISA screening process fundamentals and more about its questionable role within a well-established Lyme crisis - I'm definitely interested in your perspective -

The short version of my statement is: 40+ years into an epidemic of what CDC recognizes as the "fastest growing infectious disease in the country," with the known problems with the serology testing for Lyme and the Bb's known impact on immune function, we shouldn't still be batting around ELISA complexities/economies and witnessing the Lyme cabal infuse gross disinformation into academia, the medical community and mass media anything but about how to work around the failed testing protocol and accurately diagnose Lyme.

At this stage of this crisis, there is no defensible reason for the CDC not to recommend a WB as the first test, at the very least. The primary purpose of the ELISA screening is irrelevant and corruptive if the results are not reliable.

A. By all other standards of the CDC's infectious disease management, the issues diagnosing Lyme have extended beyond "oooops and we're so incompetent" and toward a coordinated effort to artificially suppress diagnoses.

B. Also, less understood among the public but those in the field and in the government are perfectly aware that the primary purpose of the CDC's specific case definition for Lyme disease is actually their surveillance method criteria and process. In other words, the purpose of the CDC's testing protocol, which requires the two-tiered testing process. By the very nature of the disease tracking process, these tests are logically designed to be highly specific, not broadly capturing all cases of Lyme and therefore aren't good diagnostic tools.

To this end, even the CDC states on their website that Lyme is a clinical diagnosis and tests are not to be used solely for diagnosis - albeit well-hidden and either unknown by MOST MDs, particularly Infectious Disease docs or simply ignored (and most don't know how to clinically diagnose Lyme because they're not taught to and the system isn't designed to acknowledge it):

"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

C. The context for these diagnostic issues are also important. One can question whether or not the following actions were made in support of the surveillance process, or are part of the ongoing manipulation of science and medical response to the Lyme epidemic. But we're not much further along than we were 40+ years go.
- The infamous Dearborn Meeting decisions to manipulate the WB bands and interpretation for positive results;
- The ongoing public disinfo campaign waged to confuse the medical field into misunderstanding Lyme sx and the grossly incompetent serology testing;
- The multiple financial conflicts of interest in those at the head of the Lyme cabal and their patents on the Bb proteins involved in the science that underpins the diagnostic testing and vaccine development they profit from;
- The destruction of the professions of most medical professionals who circumvent the problematic system and successfully treat Lyme patients with the true Lyme science;

...and much, much more.

And while your explanation of the purpose of the ELISA isn't wrong, it's just that it can't be taken out of this context and defended as a logical step in the diagnosis of the Lyme epidemic.

-p

Post Edited (Pirouette) : 10/11/2017 10:14:41 AM (GMT-6)


biscotta
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Date Joined Oct 2017
Total Posts : 7
   Posted 10/11/2017 9:36 PM (GMT -6)   
Hi guys, thanks for the responses! I have been fortunate enough lately to be able to work part-time from home, so sorry for the delayed reply.

Psilociraptor -
Basically, what I mean about the sensitivity thresholds is it seems like they have set the bar for a positive too high. The high prevalence of false negatives makes me think they require quite a bit of color in order to call it a positive. However, there could be other issues, like Lyme patients' antibodies being low at certain stages of disease progression. I would have assumed this to be the case for late-stage Lyme but the paper Pirouette linked says that early stage has the same problem. (Thanks Pirouette for that study!) But honestly, I think the problem is more their sensitivity than our crappy antibodies.

Girlie -
That's great to hear that there's movement on this issue in Canada. I know that the US's IDSA is a huge barrier here so it would be great if other countries allow a little more room for alternate perspectives. And it's also great that you have a supportive GP!

Missouri -
I can't say I was never skeptical of the LLMDs, because as I've mentioned, they don't have the ability to back up their position with very strong clinical evidence. A *lot* of the reason that I decided to put my faith in them is because the community of Lyme patients advocate for them so strongly. I figured that if so many patients think that's the best way to go, there must be something to it. Once I got to know the LLMDs and their staff, I realized that they're still scientific in their approach, trying different combinations of drugs, different supplements, making observations, seeing what works. It's just that they can't publish a lot of that data.

But yes, I treated for about three years, and ultimately I am still left with some very severe symptoms. Some symptoms got better: brainfog, air hunger, balance problems, and on and on. I used to have so many weird symptoms.

Now, it's mostly fatigue and orthostatic intolerance. I can't be on my feet for very long, and even sitting straight upright is difficult. I'm able to use a laptop in bed, which is the only reason I can work. Each year, I'm able to do less and less. It's getting to the point where I'm losing the ability to keep myself fed: shopping for food, cooking meals, etc. I'm not making much money so I have to live with family anyway, and they're taking over a lot of those daily tasks.

It's really hard. I'll be posting soon to ask for help, because it's terrifying to imagine where I will be in 5 or 10 years.

Your WB is very interesting. You're actually one band shy of the elusive CDC diagnosis on your IgG.

My first WB was in 2011:
IgM 18+,31+,34+,41+
IgG 18+, 23-25+, 41++, 58+ and a few ind's

How long have you been ill? For people who have had Lyme in their system for a long time, their immune system weakens, and they produce less antibodies. My IgG reactivity went *way* down from 2011 to 2014. Interestingly, my IgM reactivity stayed about the same.

I'm glad to hear that you're improving, though. That's wonderful news, and to be honest, the best sign that you can hope to see. So much of what LLMDs do is just based on symptoms - try this and see if you get better, if not, then try that.

Pirouette -
I actually found you guys just through Google. I was looking into cistus tea and found an old thread on here. I'm looking into herbal self-treatment at this point, so I wanted to ask if you guys can point me in the right direction. (I haven't made that post yet but I will soon!)

Thanks for clarifying what you meant about the ELISA in the original quote. I definitely didn't intend for this to be a defense of the ELISA, really just an explanation of why it probably made sense at the time that it was developed. However, I do think that the sensitivity thresholds they use are off, and it seems to me that should have been apparent to them from the beginning.

But yes, I absolutely agree that it's indefensible for the CDC to continue to recommend the ELISA. It's also ridiculous that they continue to ignore the bands that were used in the failed vaccine, because those bands are highly specific for Lyme and should absolutely be used for diagnosis. But they just pull the "not for diagnosis, just for monitoring" card.

So this reveals a problem in our medical system - doctors regularly rely on a source for diagnotic criteria that is explicitly not intended to be used for diagnosis. I'm sure that they do so because it's the most authoritative, centralized source of information. It isn't realistic for the average PCP to go looking up diagnostic guidelines in the medical literature for every disease. However, unless the government created some other resource for diagnostic criteria, the only other source of criteria would be organizations like the IDSA.

I'm not a conspiracy theorist, but I am cynical as all hell. It seems to me that the way that the IDSA and CDC keep sticking to their guns on these issues has to do with money. But I don't know enough about all the things you listed in (C) to understand their motivations. The Lyme vaccine is deader than dead, and I'm assuming that any lawsuits from it have long been settled. So where is the incentive to stick to these criteria? Profits from running tons and tons of ELISAs? Wouldn't the patent have expired by now? Or dog vaccines? Same thing on the patent there too. I just don't get it. It just seems like there's a more complex situation going on that I know nothing about. It seems like you know a lot more about it than I do.

Post Edited (biscotta) : 10/11/2017 9:39:09 PM (GMT-6)


Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 10/12/2017 8:50 AM (GMT -6)   
Biscotta- I am so sorry you are still suffering. I know there are a lot of people in this group that can help you. I am still new here, but the wealth of knowledge and compassion here has amazed me.

I have been sick for about 2 years. I had a tick attachment. Developed a lump/tumor thing where it attached for about 5-6 weeks. No bullseye, so I blew it off like the CDC website recommends rrrrghhhh.

After that, my mystery illness started developing... I wasted 2 years trying to figure it out myself. I thought it was diabetes at first, then BFS (Benign Fasiculation Syndrome), Syphilis(tested neg), then maybe MS.

I still wonder if Ehrlichiosis, Tularemia, Mycoplasma, and Bartonella could be what it is.

I wonder if some people only get "co-infections" and not Borrelia. Could that possibly explain my 4 band lighting up, but none of them borrelia specific? I am trying to find people that have the same band pattern.

biscotta
New Member


Date Joined Oct 2017
Total Posts : 7
   Posted 10/12/2017 9:40 AM (GMT -6)   
Missouri -
Thanks for the empathy! I also went two years from being bitten to diagnosis. In my case, I didn't realize it was a tick bite. I did have a rash but not a textbook bullseye rash, and my doctor dismissed it. I was asymptomatic for a year, and then spent another year trying to get a diagnosis.

about only having coinfections... Each tick can host different microorganisms, so it's possible in theory to have a tick carrying only coinfections. However, I don't think that's what's going on with you.

Each band on the western blot represents a protein from the Borrelia bacteria. Your antibodies are applied to those proteins. The lab technician then looks to see which proteins have antibodies stuck to them. Since antibodies bind pretty specifically, if you have antibodies sticking to those proteins, it's probably because your immune system has encountered those exact proteins.

However, there are some cases where antibodies can bind if you've encountered a very similar protein. Western blots can also give false positive bands because of non-specific binding (these tend to be "ind" though).

I would think that it would be statistically unlikely that you would have IgG antibodies to four Lyme proteins if you were not infected with Lyme disease at some point. There's probably a higher probability that your immune system isn't functioning so great after being infected for two years.

So, the Lyme WB won't tell you anything about any coinfections. It's specific to Lyme.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 10/12/2017 11:21 AM (GMT -6)   
Interesting you say that when almost everything I've read says those bands are non-specific to Lyme as in they cross react with other baddies. 41 syphilis, yaws, etc. Can't find much on band 30. I've read in a lot of places 58 and 66 cross react with other baddies too. hmmmm...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 10/12/2017 11:54 AM (GMT -6)   
Missouri said...
Interesting you say that when almost everything I've read says those bands are non-specific to Lyme as in they cross react with other baddies. 41 syphilis, yaws, etc. Can't find much on band 30. I've read in a lot of places 58 and 66 cross react with other baddies too. hmmmm...


Your Igg results:

igg 30+, 41+, 58++, 66+

From Igenex website:

CDC criteria: 5 of the following 10 bands are present: 18, 23-25, 28, 30, 39, and 41, 45, 58, 66 and 83-93kDa.
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

biscotta
New Member


Date Joined Oct 2017
Total Posts : 7
   Posted 10/12/2017 9:17 PM (GMT -6)   
Missouri -

Yes, sorry, I should have worded it differently. It's hard to balance concision with accuracy when discussing science in lay terms. smile

So I'll elaborate. Antibodies are quite specific but it doesn't mean that for every antibody your body makes, there is only one protein that it can possibly bind to on the planet.

Lyme and syphilis are very distant cousins, so that might be why they have cross-reactivity on certain proteins. On a genetic level (and on the proteins that are made from those genes), they probably share some similarities. (Disclaimer: I have never compared their sequences.) If your antibodies select a stretch of a protein that those two diseases have in common, then you could theoretically take those antibodies and have them react to both a Lyme protein and a syphilis protein.

I'm not well-versed in the cross-reactivity of the Lyme bands - i.e. which bands can be positive if you have antibodies to a different disease. I'd rather get you a quicker reply out of my general knowledge than have to delay for a few nights while I research that. But let's say that out of the four bands, each one has cross reactivity to a few different diseases. If it's a situation where the cross reactivity is different per band, like:
30: Disease A & B
41: Disease B & C
58: Disease D & E
66: Disease A & E
That would mean that your illness could be explain either by Lyme or by a combination of diseases (A, B & D; or B & E, etc). The simplest explanation is often the correct one, so explaining all four bands by one disease makes more sense.

However, let's say that instead of my ABC scenario above, the situation is that every band is cross reactive to the same microorganism, say syphilis. That would mean that you either have Lyme or you have syphilis. At that point, you would diagnose based on symptoms and exposure.

So alll of that is what I meant when I said it seems statistically unlikely for you to have that many of the CDC bands without having Lyme disease. There has to be some explanation for those bands. If that explanation is simple (i.e. one disease instead of multiple) and it matches up with your symptoms AND matches up with your exposure (the tick bite) then it is probably correct.

Don't fall into black-or-white thinking, that it's either positive or it's negative according to some criteria. Even the WB is an imperfect test. It is an indirect detection of Lyme, because it detects the antibodies in your body. Strep throat? Do a throat swab and culture it. Strep is easy to grow and lends itself well to culture tests. So do many, many other bacterial infections. Lyme does not. So we're stuck relying on antibodies to tell us about a disease that is very good at evading the immune system and suppressing it.

Sorry to be so long-winded! I hope that helps.

Psilociraptor
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Date Joined Jul 2016
Total Posts : 997
   Posted 10/13/2017 7:26 AM (GMT -6)   
Antibodies are typically low in early illness because it takes about 2-4 weeks to produce. This would actually be pretty general to all illnesses. The controversy is more in late stage. I've seen one paper suggest that immune complexes can lead to false negativity https://www.ncbi.nlm.nih.gov/pubmed/1967770. Borrelia is also known to cause humoral dysfunction but I don't know the implications of that for testing. Another red flag to me is that regional variation of borrelia s.l. species has been poorly explored. As well as the fact that cultured isolates produce different antigen than live infection. It's very likely in my mind that the antigen pool used for the tests is not reflective of all real world scenarios. Also, just out of common sense I have to imagine that any parasitic illness, with it's immunosuppressive nature, would lead to variable outcomes that preclude a one size fits all diagnostic scheme. I mean, we're talking about the human as an ecosystem where each interaction triggers a nonlinear cascade of consequences defined by innumerable variables. How we ever got the idea that diseases, treatments, diagnostics, etc could be standardized for anything other than scientific purposes is beyond me.

As for sensitivity thresholds that makes sense. I've read WB can be very subjective when it comes to deciding which bands are strong enough. Do you know if they use pixel counting for this? Or just eyeball it? I would think the subjectivity would be greatly reduced by eliminating technician bias. In either case I suppose any standard threshold can be subject to bias itself.

Biscotta, I see you're interested in an herbal approach. Coming from a biochem background myself I was super impressed with Stephen Harrod Buhners 2015 book Healing Lyme. I mean, it's quite clear he's an herbalist and not a scientist. But for the most part he's done his research better than most, presents it coherently, and gives an expansive list of herbal suggestions for each and every little thing. There's nothing woo woo about his material. He's a really grounded fellow. I've been using his protocol exclusively. No doubt with some bumps in the road, but it certainly is potent and I have talked to many people in full remission or partial remission from it. Just gotta keep tinkering with it. But already I've experienced some good benefit. I don't think you can do better. Not to say there aren't herbs he doesn't recommend that might be good. But when you're looking for a starting place Buhner is really good. He got me totally out of reductionist mentality of "this is a bacteria, we must kill it with antibiotics" and into the "whole plants are chalk full of anti inflammatories, quorum sensing inhibitors, adhesin inhibitors, efflux pump inhibitors, biofilm degrading comprounds, immune modulators, secretion system inhibitors, etc" mindset. Treating non linear diseases with non linear therapies. Herbs really embody holism. And yet, my education never exposed me to herbs as anything other than a nuisance of organic matter that novel drugs were trapped inside. Patiently waiting for scientist to tediously chip away all the undesirables to make them viable. It's kind of funny looking back. What a bizarre world we live in.

On the topic of cross reactivity. One thing to keep in mind is that many surface antigens play a role in cellular adhesion. So pathogens with similar tissue tropisms actually have a potentially strong likelihood towards immunological cross reactivity even if they are unrelated. This is because the charge and shape of these proteins is specifically evolved to bind adhesive proteins in the human tissue meaning they can generate a similar antibody response. What Biscotta is saying about the "simplest explanation" is still true. Very few pathogens occupy the exact same niche so while there may be overlap, the more Lyme positive bands you have, the less likely it is to be something else. But all in all I don't think it matters THAT much. It's always comforting to be able to point to something and say "Hey that's Lyme disease". But EVERY chronic infection is going to be complicated by coinfection with transmitted illnesses, latent viruses, and/or commensal organisms. Every person is going to have to personalize treatment approach through trial and error. So ultimately it doesn't matter too much whether this is Lyme disease, or syphilis, or some yet unidentified protozoan. What really matters is that you're scrapping the idea of chronic illness as something other than chronic infection. And you're scrapping the idea of chronic infection as something linear that can be treated with linear approaches. You're looking at the human as a complex ecosystem of diverse cellular bodies and treating it in that light. I think that's really more important than identifying all the players involved. Because, face it, there will always be a limit on our understanding of the details. We have yet to apply metagenomics clinically and even when we do it's a long way from understanding all the subtle interactions between microorganisms present. Which ones are more relevant, which ones are just supporting players, which ones are totally benign, etc. Another reason i really like herbs. I don't have to target every microorganism with laser precision. I can just assume that I get pretty good coverage with plants. Though more knowledge is always helpful.

"but I am cynical as all hell."

:O Are we finally allowed to swear on these boards???? Testing **** crap darn it

Edit: swear fail. oh well. at least I can say "hell"

Post Edited (Psilociraptor) : 10/13/2017 7:34:13 AM (GMT-6)


Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 10/13/2017 7:47 AM (GMT -6)   
Biscotta- That makes sense. Wow thank you for the reply!!!!

Psiloraptor- That makes sense to me too and thank you for the reply! Unfortunately the insurance companies and most doctors seem to want the black-or-white, check the box, identify the baddies before we treat/pay...

biscotta
New Member


Date Joined Oct 2017
Total Posts : 7
   Posted 10/14/2017 12:47 PM (GMT -6)   
Missouri - No problem!

Psilo -
Great point on the variations of borrelia species as well as the uncountable variables within the human body.

Yeah, you only eyeball a WB if you're like I was in grad school, "Is there any protein there? Y/N" My experiments were just qualitative. However other members of my lab would do semi-quantitative WBs with a scanner and a program that measures the intensity of the color and the size of the bands. I'm sure that any lab that's using WBs for diagnostics would use software rather than eyeballing. Igenex probably has a standard definition for how much intensity is "ind", how much is +, how much is ++.

But yes, deciding where to make those cutoffs is tricky. I like that they at least have an "indeterminate" result, it allows for a shade of grey in between the black and white.

Thanks for the recommendation of Buhner, it sounds like exactly what I need to get started. I ordered his book. One thing I'm wondering about is if I will need help to decide whether I need should target any coinfections. I've long felt that my LLMDs were just missing a piece, because they were able to resolve many symptoms. We mostly treated for Lyme and babesia but I think both LLMDs did use things that could hit multiple coinfections.

I hear you about the reductionist thinking, though! My lab did a lot of work with natural products. In that field, it's like the whole goal in life is to figure out what one molecule is the magic bullet. I remember being frustrated that nobody was doing that kind of work on some of the more successful Lyme herbs.

But you're right, there's no need to reduce it down to the most potent molecule, because there are plenty of other beneficial components in these herbs.

Also an excellent point about cellular adhesion.

I was thinking more about what the angle could possibly be for the IDSA and I'm thinking liabilty. Can you imagine if a class-action lawsuit could get traction for every ELISA-negative chronic Lyme sufferer? It's like when an industrial company gets caught polluting an area and making people sick, they don't just fess up. They lawyer up. But at least industrial companies don't control the means of diagnosis. A cancer cluster is a cancer cluster, it's pretty strong evidence.

Anyway, that's all pure speculation. But the intractability of the situation makes me feel like we won't get real movement in the US until all the current IDSA guys are long gone.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 997
   Posted 10/15/2017 5:28 AM (GMT -6)   
Would there even be a case? I feel like they could just claim "the scientific evidence wasn't there". But I don't know jack about legal. I assume it would still be expensive even if they had a case. But I hear you on that last part. I almost have to ignore all the Wormser, Lantos, Auwaerter, Baker, et al papers at this point because they are so obviously biased and agenda driven. Dogmatically attacking any science that supports the chronic nature of Lyme while promoting their own unsubstantiated nonsense. It's funny actually because the whole argument that 30 days of doxycycline is curative is built on logical fallacy. Absence of evidence for spirochete =/= evidence of absence of it... smh... That doesn't make the alternative true, obviously. But at least chronic Lyme is a testable hypothesis whereas Post-Lyme Syndrome is not. I mean if there is just one cluster of spirochetes, tucked away in a deep tissue, intracellularly, in some alternative morphology, that contribute to continued inflammation that whole hypothesis goes to **** and there's no possible way to exclude human error from the inability to find it. However, if a single spirochete is found to remain and contribute to inflammation then that is solid evidence of the persistent nature. It's funny where people apply the terms "pseudoscience" and "rigor" these days. Prestigious white coats that could really benefit from some elementary logics or philosophy classes. Like... f ****** LOL. I have noticed in Wormsers more recent papers that the pressure is on. The stance has changed from "chronic Lyme is bs" to "well, we don't know for sure but there's no way you can prove it and you're still stupid for believing it #science"

"One thing I'm wondering about is if I will need help to decide whether I need should target any coinfections. I've long felt that my LLMDs were just missing a piece, because they were able to resolve many symptoms. We mostly treated for Lyme and babesia but I think both LLMDs did use things that could hit multiple coinfections."

This ones tricky. I think more research is going to move the idea away from isolated infections and even coinfections towards microbiome shift diseases. Which is really just an expanse on the concept of a coinfection. But what I'm getting at here... with the current problems with diagnostics how can we ever know the true range of things we're infected with? Do ticks just transfer a few apt pathogens or the entire microbiome of their gut contents? How many remain viable in our system? Does tickborne immune suppression lend us susceptible to opportunistic infections from our own mucosal layers? Reactivation of latent viruses, bacteria, and protozoa? Does it even matter to identify them all? How broad spectrum are our treatments anyways? Does a more holistic approach cover your bases better than trying to zero in on every possible pathogenic player?

I mean, obviously if you know you have something, nuke that little ******. Buhner has some books on coinfections as well. They're not as good as his Lyme book imo, but still pretty helpful. One thing about his Lyme book is that there is a lot of theoretical science which may or may not ultimately be true, but the recommendations are based more heavily in his 15 + years of experience with Lyme patients. Which is why he updated the book 10 years after the first one. The idea of coinfections is newer. Still a lot of theoretical suggestions but less time to hash out what works and doesn't in real life. Nonetheless a great start to coinfections (though the mycoplasma protocol seems beyond tedious). But all in all what I noticed is that many of the same herbs he uses for coinfections are the ones he uses for Lyme. With some exceptions of course, but it brings me back to the idea of holism and getting broad coverage. I don't feel as preoccupied with treating coinfections on his protocol. Many of his babesia herbs, for example, hit my Lyme symptoms pretty hard. It all just kind of comes down to playing with the theory a little bit as a starting place, and then straight up trial and error on an individual level. Ultimately you need an approach that doesn't just handle the knowns, but covers your unknowns as best as possible as well

Post Edited (Psilociraptor) : 10/15/2017 5:39:32 AM (GMT-6)


cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 645
   Posted 10/15/2017 8:56 AM (GMT -6)   
Biscotti - Great post and welcome! I love all the science. I had 7 ELISA, all negative, told it was in my head, etc. 6 years of bouncing around from Neuros, Cardiologists, Endocrinologists, a bushel of Xanax and Klonopin in the garage. My LLMD ordered the Igenix and Igenix said on my results that my Lyme was considered positive by Igenix but negative by CDC standards. I guess I had the band they throw away. I tell every doctor I know, including the ones who missed my Lyme to go straight to Western Blot and do it after a two week Doxy run. Whether it will catch on, who knows, but if I can save one person....I actually went back to the Neurologist (head of Neurology, famous Hospital) and told him I was getting treated for Lyme and he said, "Well, sometimes placebos help." This guy is in THE position to actually ruin people's lives with that attitude. What a MFkr!!!!

I hope you find some relief and that you consider the Buhner herbs as suggested. I have used most of them at various points because the co-infections become somewhat of a whack-a-mole situation. Plus the added benefit of lowering systemic inflammation makes life much more bearable. Although, if you are bed ridden, you might need IV antibiotics. I've seen them turn people around.

Please also delve in the the world of MTHFR. Many people who get these chronic illnesses have trouble detoxing and need to figure out how to increase Methylation pathways safely so they can detox effectively.

Psilo - I definitely think that the future of medicine is analyzing the gut microbiome and genetics to maximize health and healing. Actually, it's already here. This last round of Rifampin and all of my allergies are flaring. I'm pretty sure the Gut micro biome is not too happy right now and it's all connected. My spelling is a mess. Sorry.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

Post Edited (cr3ativegirl) : 10/15/2017 8:59:12 AM (GMT-6)


Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 997
   Posted 10/15/2017 6:40 PM (GMT -6)   
" I definitely think that the future of medicine is analyzing the gut microbiome and genetics to maximize health and healing."

I would argue it goes way beyond the gut microbiome. Very little attention has been given to the brain microbiome, the heart microbiome, the breast microbiome, blood microbiome etc. There are a few things out there. But I think this is where we're going to see a much more direct connection. Obviously, the gut is important to our entire physiology. Sometimes the gut microbiome research gets wrapped up in all this convoluted stuff about how it impacts neurology and metabolism and immunology body wide. And that's all very valid. But most of the mechanisms of these illnesses imply a much more straight forward connection. Ie "your brain has symptoms because your brain is infected" or "your chronic kidney disease is due to chronic kidney infection". Ie organ specific inflammatory stress. There can be correlations between the gut because it can serve as a reservoir for live illness, is a source of host defense and immunological development and so on. But chronic illness is a bit more straight forward imo. I think it all comes down to the tropism of a pathogen, host genetic susceptibility, susceptibility due to life style and environmental circumstances, and the type of host response due to genetic and lifestyle circumstances. It's very much like any ecosystem. A traveler arrives and the context of that system determines whether the traveler is eliminated, integrated, or whether the travelers presence will collapse that ecosystem.

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 645
   Posted 10/15/2017 7:14 PM (GMT -6)   
Psilo - I just listened to an interesting podcast where the good bacteria (if they are happy and functioning well in large numbers) actually get the bad bacteria (what we call pathogens) to fall in line and start behaving. Apparently certain strains of Bacillus are the ring leader of the gut and send out electronic messages to try and influence behavior.

I'm a big Chinese Medicine person and I don't subscribe to the the body parts approach to healing. It's all one system that has to work together. However, the brain can tip the power scale if it's under stress and not thinking positively. Stress releases inflammatory cytokines that affect the balance of good and bad bacteria. It's all so fascinating.

I definitely sleep better when I take my probiotic before bed...it can't be a coincidence.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals, multiple co-infections
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.
Oct 2017 Dx Bartonella - @95%

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 997
   Posted 10/16/2017 5:21 AM (GMT -6)   
Oh I'm definitely not saying they're not connected. Just that the microbiome is much more expansive than the gut. Dental pathogens are found in alzheimers plaques for example. Therefor the oral microbiome still influences brain health. It's just that the brain microbiome has been altered also. The connection can be understood in a much more direct way than looking solely at the mucosal system. I know the human is one system working together just as much as I know that we are one system with the biosphere at large. I definitely subscribe much more to the chinese philosophy on healing than the western one
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