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» LymeNet Flash » Questions and Discussion » Medical Questions » Mayo clinic

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Author Topic: Mayo clinic
abbyjo
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Does anyone know how accurate Lyme testing is done through Mayo Clinic compared to others? Thanks!

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abbyjo

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Rumigirl
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Whew, no way, jose!! That's one of the worst possible places to go for that! Steer clear. They are Lyme deniers.
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Bartenderbonnie
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Previous experiences from Lyme sufferers;

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/134914?#000002

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/114609?#000000

Mayo is a waste of time.

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Lymetoo
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ZERO validity

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--Lymetutu--
Opinions, not medical advice!

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BobG
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Probably uses the CDC criteria (not originally meant to be diagnostic) for Western blot to deny sufferers proper diagnosis.
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Lymetoo
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Let's put it this way: They sure aren't going to use Igenex!

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Opinions, not medical advice!

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hopingandpraying
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As we all say: HOLD THE MAYO!!!
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abbyjo
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Thank you so much for the input! Someone I know, (mostly through fb) just had her daughter tested there and it was negative.

She says she feels confident in their negative result. So frustrating because her daughter is very ill with all the crazy Lyme symptoms and of course her doctors are all scratching their heads.

I have Lyme so I know the struggle. I tried to tell her to go through igenix and gave her a list of LLMD’s in her state. Unfortunately she’s relying on what her doctors are telling her. [Frown]

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abbyjo

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Tincup
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Hold The Mayo Clinic is notoriously worse than even the run of the mill tests.

Please share with your friend that 74.9% of those with Lyme are missed using the regular crummy tests.

In fact, over a span of many years we've only heard of ONE person with Lyme test positive at Hold the Mayo.

Then they wouldn't treat them!

BAD BAD place to go.

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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duncan
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I am not a fan of Mayo, but I kinda assumed they like everyone except imugen (sp?) basically just employed a B31 kit.

Regardless, they tested me and I tested positive, so that's TWO. But I've also tested negative there, so take both results with a grain of salt.

Where you test can matter. Part of it appears to be how they see, literally how visible, the bands are. Some labs may have better eyesight. [Smile]

I would not pick Mayo, personally.

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Keebler
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Even if one - by some astronomical chance - tests positive, what the treatment they offer? One pill (or maybe a week or two of one single drug, tops - and you are considered cured?

Like any other university hospital, they will still follow the IDSA guidelines which are sorely inadequate in all regards.

And they likely still won't consider even the most common coinfections or offer the proper treatment for those.

This is pretty much the experience many with lyme have had at mayo, even being sent home and told to just get happy, more or less only to later on find a real ILADS educated LLMD, a proper assessment and proper treatment options.
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duncan
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Point well taken.

I guess I think of Mayo as an outsourcer. They are a favorite of the likes of the NIH and CDC.

That aside, I'd give a wide margin to any one of their, er, ilk.

On point of principal, I used to know if they used a B31, but I've forgotten, and as Keebler points out, ultimately it's where you can get good treatment.

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Keebler
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I think that after so many got so very ill with the lymerix vaccine a few years, most IDSA connected doctors & the labs they use do not recognize band 31, which, of course, is a major band that verifies lyme. They also don't check all the other bands.

Igenex labs does, though, test all the bands and even other strains of various tick-borne infections.

The NIH and CDC have caused so many of the terrible problems with patients being able to get proper testing & treatment. They are in bed with and listen only to the IDSA & insurance companies to deny, deny, deny.
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Keebler
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https://www.lymedisease.org/idsa-lawsuit-pfeiffer/

Patient lawsuit against IDSA and insurers moves forward in Texas

By Mary Beth Pfeiffer - LymeDisease.org - Feb. 25, 2019
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duncan
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I do not recall dealing with the CDC much, but I'm in the NIH's little black book.

I went there in good faith and in a fit of poor judgement. Man! At least when I was there I got the sense some of them don't much care for the average Lyme patient. [Smile]

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duncan
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Keebler, strain 31, not band 31. Like B31 test kits? The tests Labcorp and Quest use? And pretty much everyone else except a couple like Igenix - also uses B31 but also 297, and Imugen with their wonky mutant strain that the NIH is enamored with.
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Keebler
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your typing B31, I thought you meant band 31 for the IgG and IgA Western Blot tests.

Strains for tick-borne infections like borrelia, babesia, etc. have different second word names with the first name the same. I've never heard of strains being given numbers.

Oh. wait. There is a Babesia WA-1, though, it still also has a second word name.

Lyme strains differences include: Borrelia afzelii, B. garinii, and B. burgdorferi, and hundreds more.

Then, there is a difference between strain and species, too. I might be mixing up the terms and not sure I even know the difference. Dr. R explains that better:

https://rawlsmd.com/health-articles/testing-chronic-lyme-disease-really-worth

. . . Chronic Lyme disease is rarely associated with one microbe. Most people with chronic Lyme disease carry multiple strains of Borrelia,

and many people have been found to carry more than one species of Borrelia. . . .

. . . The testing that is available only tests for a small fraction of the possible species of microbes that can be associated with Lyme disease.

There are 20 known species of Borrelia alone that cause illnesses and new ones are discovered every year. And that’s just Borrelia. There are literally hundreds of species of illness-causing microbes that can be carried by ticks.

The value of testing being done can also be a bit misleading. Whether you are using serology (testing for antibodies produced by the body against the microbe), or specific microbial DNA using PCR, the results are not very accurate for chronic infections. . . .


https://rawlsmd.com/health-articles/understanding-babesia

There are more than a hundred different species of babesia, but only about a dozen are known to cause human illness.

The most common babesia species known to cause human illness are Babesia microti, Babesia divergins, and Babesia ducani (WA-1).
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duncan
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You know Igenex tests with two strains, yes? My my memory is bad, so I apologize. But I think they are B31 and 297. There is also N40 and G39/40. Imugen was a darling of the NIH because it used that mutant strain...47892 or 49736 or something weird like that. But many if not most strains have been assigned designations and they are numerical.
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hiker53
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Hold the Mayo!

They were great for other issues, but missed the Lyme even though I made them give me a Lyme test.

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Keebler
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I don't know where those numbers are coming from. I've never seen them in relation to Borrelia testing.

Are they new in the past year or so?

Tests for tick borne infections need to have the infection name - both word names - aligned.

For Western Blot - BANDS matter lots.

There are some newer tests but - really - it's best to consult an ILADS trained & "updated" LLMD. ILADS . . . not IDSA.

First, usually IDSA doctors will do the ELISA, a very deficient test. Only if that is positive (rare even with active lyme) . . will they also then do a Western Blot IgG & (hopefully) also an IgA. both are needed.

But then IDSA doctors usually also require a lumber puncture / spinal tap to test the CBF / cerebral brain fluid. That is a terrible test regarding lyme as lyme spirochetes rarely hang out in the blood or brain fluid but can spring anywhere in the body and like to hide out in deeper places

and also spirochetes like to turn into a protective cyst form when they are irritated by certain Rx (such as most antibiotics as abx can't get into they lyme cyst)

noise, heat or other irritants also can send spirochetes into cyst form or spiral deeper in body to "quieter" places.

Tests can't determine lyme presence then, either.

But if there are some spirochetes still circulation in the bloodstream:


http://drcharlescrist.net/testing-for-borreliosis.html

Testing for Borreliosis

Excerpts:

. . . The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.

The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 59, 66 and 83-93. . . .

[Explains that there are various strains of borellia, so testing often misses the mark. Even if you have not traveled to various states, birds that fly - and can carry ticks and drop them off - have and they often land in NYC, too.]

. . . The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia. It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative. . . .

[lots more detail here]
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Keebler
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https://igenex.com/

IGenex labs


https://www.lymedisease.org/

LymeDisease.org -- one of the top patient education & advocacy groups.

https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

Lyme Disease DIAGNOSIS

https://www.lymedisease.org/lyme-disease-test/

Lyme Disease TESTS


https://www.ilads.org/

ILADS - top medical organization world-wide for tick-borne matters.

Conferences help throughout the year. Hopefully, all LLMD (lyme literate MDs as we call them) keep up with conference materials, too.

https://iladef.org/physician-training-program/

ILADS Physician Training course

- what you want any doctor who assesses - or addresses - any possible tick-borne infection to have completed.
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duncan
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Keebler, when someone goes to Labcorp or Qwest or wherever to test for Borrelia, they just don't test for a random strain. They test for antibodies against, usually, a single strain, strain B31.

To do this they employ what has pretty widely been referred to as B31 kits.

Over the last couple of years there has been a consolidation of sorts within the Lyme diagnostic theater, so companies like Immunetics and Imugen - well, I'm not sure they exist anymore as distinct corporate entities.

But the B31 kit sure does.

I'm just not certain that's what Mayo tests against, but it matters little for what really counts, and that is can you get adequately treated.

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Keebler
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What in the scientific name for the infection is this "strain B31" that you talk about?

Borrelia _____ (what?) It needs a word name.
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duncan
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Bb sensu stricto, I think, although maybe sensu lato. I can't remember which, I think there is some debate where B31 was derived from and there was talk if I'm not mistaken it was from Europe.

I can't remember stuff.

But it's Bb. [Smile]

I have been tested against at least three distinct strains. I think four, but not sure about four.

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Keebler
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Oh, we are talking about two different uses of the word "strain"

Plasmids, sounds like . . . the use of DNA "strain" here does not refer to different strains of borrelia infections, though, but to strains of DNA within one strain of borrelia - burgdorferi


from Mayo:

https://www.uniprot.org/proteomes/UP000001807

Mayo Clinic - November 9, 2018

Proteomes - Borrelia burgdorferi (strain ATCC 35210 / B31 / CIP 102532 / DSM 4680)


Others here might have more detail - you can call Igenex, consult ILADS and LymeDiesese.org -- opinions of all 3 should be sought.
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duncan
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Strains vs species. Two different animals, but related, and both have names.
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Keebler
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Still, there is no test that can confirm Bb or other borrelia is not present. False negatives can be high for all borrelia testing.

It's to be, ultimately, a clinical diagnosis - performed by those who are highly trained such as with the ILADS materials & methods.

The Bb DNA strain tests you seem to be referring to still would need to find Bb in the first place.

The work of Pamela Weintraub talks about different strains in her book "Cure Unknown" and her posts regarding the Bulls Eye Rash - how some strains that do not make people ill can still produce the unique rash.

But, then, we are talking about those with no ill symptoms and you are likely here because you are feeling unwell.

also, regardless of what DNA strains might have been sought in your case, to consider with all tests, was it done right?


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease
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Keebler
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Bottom line, is not so much if your test was "accurate" though, sure, that's a good question. Even "accurate" tests can miss lyme / TBD.

But beyond that - the question is how are you feeling? How are you doing?

If well, you'd likely not be here asking if your test was a good one or not.

Mayo's reputation is terrible for lyme and they have consistently tried to disprove it more than understand all the variables. They are more likely to send away sick patients with lyme/ TBD and tell them to "get a life".

How you are doing can tell you more about if you need to seek additional counsel. My bet would be on an ILADS "minded" or "educated" (or similar) truly lyme & tick-borne literate MD or ND,

not someone only following IDSA dictates.

If you have past test or clinical diagnoses for lyme / TBD (tick borne disease) . . . consider if that has become chronic.

But also consider other chronic stealth infections such as mycoplasmas, Cpn, HHV-6, etc. Even those who have lyme / TBD often also carry these other chronic stealth infections.

These do not have to go along with lyme and can stand alone, though.

Also consider your glucose / insulin heath. If you might be insulin resistant, pre-diabetic or undiagnosed diabetic, that can cause one to feel terrible in all kinds of ways.

If you can obtain a glucose test kit, no prescription needed, test certain food 1 hour & 2 hours after finishing. that's a start to seeing if there might be issues. More detail at Virta Health website links.
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Lymetoo
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quote:
Originally posted by abbyjo:
Thank you so much for the input! Someone I know, (mostly through fb) just had her daughter tested there and it was negative.

She says she feels confident in their negative result. So frustrating because her daughter is very ill with all the crazy Lyme symptoms and of course her doctors are all scratching their heads.

I have Lyme so I know the struggle. I tried to tell her to go through igenix and gave her a list of LLMD’s in her state. Unfortunately she’s relying on what her doctors are telling her. [Frown]



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Opinions, not medical advice!

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Keebler
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TuTu,

Thanks for clarifying the person for whom the questions have been asked. My eyes must have skipped that part.

abbyjo,

sorry - I got mixed up and my posts / writing were geared more to addressing you, rather than to the person with the questionable Mayo send-off.

It's great you are looking out for others who may not have the background. You might select some of the links and share with them - the ones you think they are more likely to really delve into.

ILADS and LymeDisease.org - and Igenex - might be the basic links to be sure they have.

Good luck.

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