Lyme community says we all have it

[Valentijn]

I saw that one study that was posted on here a whileback regarding infectolab indicating 89% accuracy, but is one study enough? How can I know it is reliable?

It's the best information available at present, and that 89% accuracy rate (are you sure it wasn't a bit higher?) is pretty impressive compared to other Lyme tests having something like a 50% rate of false negatives. I do think it's important to take symptoms into account and supplementary lab tests as well (CD57, etc), due to those issues.

When you've been housebound for a couple years, and are slowly but steadily getting worse, I think a test showing 89% accuracy in a single good-sized study is more than sufficient to support the likely efficacy of a treatment. I'd feel quite differently if someone were perfectly healthy and all other relevant lab results were normal.

 

[SOC]

But what happens if one comes back positive? A false positive is pretty much as bad as a false negative.

Not to my mind. If I'm sick, I'd much rather take abx that I might not need, than not get abx I do need.

I heard a LLMD on Chris Kresser's podcast talking about the difficulty of assessing lyme and the unreliablity of pretty much all testing methods. Even if I found something reasonably reliable, I have virtually zero chance of finding an LLMD in the Northeast of England.

This is what has deterred my from getting any testing done. I cannot be at all confident in the results. I saw that one study that was posted on here a whileback regarding infectolab indicating 89% accuracy, but is one study enough? How can I know it is reliable?

I really need the answer to these questions before I could ever take the plunge. Am I missing some crucial bit of evidence?

No tests are perfect. Few are nearly perfect. The medical community just likes to pretend so.

For example, pathogen tests that test antibodies are testing for (duh) antibodies -- not the infection itself. There's a number of reasons the body could be producing high or low antibodies that are not directly related with the level of infection in the body. Antibody testing is an indirect measure, not measuring the parameter they're purported to measure, but something related. So lots of room for inaccurate results there.

Testing is a bit of a gamble. It might be wrong -- false positive or false negative. Or you could come up borderline... and the borderlines are somewhat arbitrary. This is the nature of medical testing -- no guarantees. You pays your money and you takes your chances.

 

[Helen]

There's a number of reasons the body could be producing high or low antibodies that are not directly related with the level of infection in the body.

Hi Soc, Could you please tell about them, or link to? I have been looking for that answer for a while. Thanks in advance.

 

[xrunner]

No tests are perfect. Few are nearly perfect. The medical community just likes to pretend so.

That's right.
I just went through quickly that paper and noticed a couple of things.
The authors say:
A Borrelia-LTT test that has become negative is not evidence, however, that a Borrelia infection has been cured. This was demonstrated in follow-up studies over a one year period in patients with late borreliosis. Borrelia that persist in spite of antibiotic treatment, which have been described multiple times [27, 28, 29, 30], are very likely responsible for this phenomenon.
Then it seems that another couple of studies found LTT to have a low specificity (see notes 24,25).
Finally, if I'm not mistaken Dr M stopped recommending this test some time ago because of the high number of negative results. My own LTT was negative but I got better on abx.

 

[Valentijn]

A Borrelia-LTT test that has become negative is not evidence, however, that a Borrelia infection has been cured. This was demonstrated in follow-up studies over a one year period in patients with late borreliosis. Borrelia that persist in spite of antibiotic treatment, which have been described multiple times [27, 28, 29, 30], are very likely responsible for this phenomenon.
Then it seems that another couple of studies found LTT to have a low specificity (see notes 24,25).
Finally, if I'm not mistaken Dr M stopped recommending this test some time ago because of the high number of negative results. My own LTT was negative but I got better on abx.

The LTT is an older test. The new one validated in a study is the Elispot-LTT.

 

[xrunner]

This is the study from which those quotes were taken, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/
the german authors found an 89% accuracy for that test but they always refer to it as LTT. Incidentally this accuracy is based on comparison with serological tests (which often fail) rather than absolute accuracy.

 

[Valentijn]

This is the study from which those quotes were taken, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/
the german authors found an 89% accuracy for that test but they always refer to it as LTT. Incidentally this accuracy is based on comparison with serological tests (which often fail) rather than absolute accuracy.

That's the one 89.4% sensitivity, 98.7% specificity. 1.3% of the Elispot-LTT results were a false positive, and 10.6% were a false negative. So that's still not a great rate on the false-negatives, but a lot better than the traditional tests. And a very low rate of false positives, so it isn't saying a bunch of people have Lyme when they don't.

 

[SOC]

Hi Soc, Could you please tell about them, or link to? I have been looking for that answer for a while. Thanks in advance.

Sorry, don't have links to hand or the time or energy to look them up.

Here's some hints for your own search, though...
1. Inability of the immune system to produce antibodies well, eg immunoglobulin deficiencies. Other immune abnormalities may not be currently documented.
2. Time since original infection. IgM antibodies remain after primary infection, but slowly reduce over time, so it is expected to find high AB titres soon after primary infection, less so very long after primary infection.
3. Varying ability among people to produce antibodies -- some people's bodies go wild producing antibodies, other people's bodies are sluggish, even if not considered immune deficient. This screws up any real "standard" measure for all people.

 

[Kati]

There are alternative views of course. Based on the same evidence someone might say that most of these diagnosed with Lyme do not have it, they used to and its gone, and they are dealing with post-Lyme disease. Just as those with enterovirus can have post-enteroviral disease, including post-polio which is an enterovirus. Similar arguments exist for Q fever and SARS, and there are probably more.

Then there is the possibility that many post-infectious syndromes are really some kind of autoinflammatory disorder, such as limbic encephalitis under the microglial theory. Or that the pathogens no longer matter except that lingering pathogens that cannot get cleared keep activating the immune system, and this activated immune system is the real problem.

While there are good arguments for Lyme as a trigger or for persistant triggering, its less strong for long term causation. Similar arguments apply to herpes and enteroviral infections, plus Q fever.

I prefer to say we just don't know yet. We all need better science. We should all be fighting for better science into all of these infections and their consequences.

What @alex3619 said

 

[alex3619]

Sorry, don't have links to hand or the time or energy to look them up.

Here's some hints for your own search, though...
1. Inability of the immune system to produce antibodies well, eg immunoglobulin deficiencies. Other immune abnormalities may not be currently documented.
2. Time since original infection. IgM antibodies remain after primary infection, but slowly reduce over time, so it is expected to find high AB titres soon after primary infection, less so very long after primary infection.
3. Varying ability among people to produce antibodies -- some people's bodies go wild producing antibodies, other people's bodies are sluggish, even if not considered immune deficient. This screws up any real "standard" measure for all people.

Antibodies are indicative of a specific infection but never proof of one. To the list by @SOC I would like to add cross-reactivity. For all we know the real culprit in post-Lyme disease is a Lyme like infection carried by ticks that is NOT Borrelia. Ticks carry hundreds of infective agents. So its possible some get Borrelia and recover, and some get Borrelia and something else and don't.

PCR has issues as well. So do blots.

We need better research. All diseases that are not understood need better research, which means more funding, which means more support from the funding agencies. Governments claim that medical costs are becoming unmanageable. We live in a world in which disease can easily spread to vulnerable groups. We are not in isolated villages any more. So the way to fight disease starts with research. Failure to fund adequate research will add to the financial burden of tomorrow.

 

[Helen]

Thanks a lot @SOC and @alex3619.

I´m trying to find out if a four time higher Lyme IgG number from a second antibody test could mean anything but an ongoing infection ( also a high IgM in the retest). I hadn´t been bitten by a tick again and had been on antibiotics on and off for several months.

A Lyme doctor and researcher told me to get another antibody test to see if the abx had had an impact on the numbers, and when it showed up to be four times higher I am trying to find out the possibilities of this unexpected result.

I thougt the possibility to retest for antibodies could be of interest for some more people here - if reliable when there is an increase. And also the importance of keeping track of the antibody numbers, not just accept the answer that the test was negative.

Alex, I do agree to what you wrote about the importance of adequate research.

 

[Daffodil]

remember that people could be responding to antibiotics because of the autoimmune nature of CFS, and probably of chronic lyme. there is inflammation in the gut, which drives bacterial translocation. rocephin, which i responded to, is definitely a wide spectrum antibiotic and could have been acting on that, so it helped my fog a lot.

lyme testing could be positive because it has reactivated due to weakened immune system state from CFS autoimmunity.

who knows?

 

[Hip]

Many in the lyme community insist everyone with ME/CFS, fibromyalgia and the like all likely have lyme and don't know it.

Where did you come across this, may I ask?

Many of the symptoms do overlap and many with lyme went undiagnosed or had previous diagnosis like ours.

Now I'm panicked that what if it is lyme. I had the blood test come back negative but so do many who have lyme. I just want to be confident in knowing what's wrong with me so I can begin a game plan and that's different if it's lyme, fibro or ME.

In this post (and my posts that precede it) I made an attempt at providing a differential diagnosis that can help to distinguish ME/CFS from Lyme disease.

 

[Antares in NYC]

Many in the lyme community insist everyone with ME/CFS, fibromyalgia and the like all likely have lyme and don't know it.

Many of the symptoms do overlap and many with Lyme went undiagnosed or had previous diagnosis like ours.

Now I'm panicked that what if it is lyme. I had the blood test come back negative but so do many who have lyme. I just want to be confident in knowing what's wrong with me so I can begin a game plan and that's different if it's lyme, fibro or ME.

Just my two cents: I'm personally inclined to think that ME/CFS is a "state" (a sort of neuro-immune disorder, or neuro-inflammation) that can result not from one, but many different pathways. I'm also starting to think it may be the combination of a number of pathogens and conditions that conspire to disable your immune system (it has been proven that both EBV and Lyme can do that; these pathogens evolved to trick and manipulate the human immune system so they could survive).

As you pointed out, many of the symptoms of Lyme and ME/CFS not just overlap: they are the same, which adds to the suspicion.

Lastly, I recently did the Igenex Lyme test, which unlike standard Lyme WB tests, Igenex looks for up to 300 different strains of the borrelia pathogen. The test came up positive in just about all counts. My girlfriend (also suffering from debilitating CFS symptoms, bedridden for the second half of last year), also came out positive for Lyme: in her case, both standard Elisa and WB tests confirmed it (she didn't need the expensive Igenex test, thankfully). What's extremely bizarre to me is that our PCR tests come out negative, yet WB/Elisa show clearly positive. I have no clue what that means.

In a way, it wouldn't surprise if Lyme, or the many strains of borrelia and it's co-infections, are more common and more spread than people think. The CDC reports 300,000 new cases of Lyme annually. Yes, every single new year. It was endemic to the northeast, now there's Lyme ticks in every single State. They estimate up to 20% of those new cases of Lyme become chronic, since early detection is difficult and most doctors don't seem to be aware of the disease, it's symptoms, and it's horrible consequences if not treated early. Then the medical establishment screws patients even further by denying them long term care, just like their masters at the insurance companies told them to do (it's all well documented here: Under Our Skin).

Some of the members of the official Lyme board have the gall to deny the existence of "chronic Lyme" or "post-Lyme", while holding pharma patents for the development of drugs to treat.... yes you guess it: chronic Lyme! The corruption in the system is appalling, yet these people are in charge of setting the guidelines for how to treat it. The fox guarding the hen-house.

Going back to my personal case, and just to add to the puzzle, the routine blood tests for both my girlfriend and I seem to show extremely high titres for EBV, HHV6, cPN, bartonella, and many other concurrent viral and bacterial infections. Our EBV numbers are scary, basically off the charts. This leads me to believe the theory that these pathogens (EBV and Lyme in particular) cunningly harm and disable your immune system so they cozily evade it and camp in your system.

In conclusion, due to the poor diagnostics methods, research money, the shameless conniving of the medical establishment with the insurance companies, and the lack of interest to find a cure, diseases like Lyme will keep slowly spreading, and ME/CFS will remain grossly ignored and underfunded. I think there's something to the theory that Lyme/borrelia may be intertwined with ME/CFS. It wouldn't surprise me one bit, but without proper funding, we will not be able to find out.

 

[Antares in NYC]

There are alternative views of course. Based on the same evidence someone might say that most of these diagnosed with Lyme do not have it, they used to and its gone, and they are dealing with post-Lyme disease. Just as those with enterovirus can have post-enteroviral disease, including post-polio which is an enterovirus. Similar arguments exist for Q fever and SARS, and there are probably more.

Then there is the possibility that many post-infectious syndromes are really some kind of autoinflammatory disorder, such as limbic encephalitis under the microglial theory. Or that the pathogens no longer matter except that lingering pathogens that cannot get cleared keep activating the immune system, and this activated immune system is the real problem.

While there are good arguments for Lyme as a trigger or for persistant triggering, its less strong for long term causation. Similar arguments apply to herpes and enteroviral infections, plus Q fever.

I prefer to say we just don't know yet. We all need better science. We should all be fighting for better science into all of these infections and their consequences.

Well said, Alex.

 

[Snowdrop]

Does anyone know of research showing whether Lyme can be transmitted in utero?

I doubt there is any but if so would like to know. I'd also like to here people's opinion's based on what they know about Lyme.

 

[Daffodil]

i believe it can

 

[Snowdrop]

Hi @Daffodil

Is your belief based on your understanding of the Lyme infection or on some long term knowledge of others with Lyme and their family history or something else?

 

[Daffodil]

hi snowdrop. i read it online i believe. i cannot remember if my doctor said that it can be transmitted that way...he may have but my brain cannot be trusted to remember correctly.

if you google, there seem to be many websites saying it can be transmitted in utero.

 

[Snowdrop]

I see that there are sites that discuss this topic of transmission. Thanks @Daffodil.