Confused about Lyme

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Hey guys!

I'm about to try to start university, and I really need to improve my health. I'm trying to decide if Lyme disease is a useful thing to try and treat, or if it's just a dead end for me :( as it's such a polarised issue (lots of people and doctors talking about false positives and saying it's not possible and others saying it's been a miracle cure) that I've had no luck researching it for myself, other than getting completely confused as to what it is and how it interacts with CFS.

Here's just a little bit of info:
  • I've been diagnosed with CFS and POTS for years, no sudden onset, and it runs in my family
  • My doctor suggested we get tested for Lyme (even though in Australia it isn't recognised, the tests were sent away to Germany to test for rickettsia)
  • The test for me and all my family came back a clear positive
  • I have never been bitten by a tick, or lived anywhere that it could occur, I have never exhibited the bulls eye rash or any of the other typical symptoms you see online that don't cross over with CFS
  • Many doctors say that Lyme doesn't exist in Australia
How then, have I tested positive for Lyme? Is it a false positive (how?)

Is it possibly the cause of many of my symptoms (poor eyesight, fatigue, concentration and neurological issues such as dizziness, insomnia and brain fog, heart palpitations, muscle soreness) and is it worth trying to treat? I don't want to spend a lot of money and time on something that won't help.

Are there any good resources for understanding lyme in terms of CFS? Is it a co-infection? Or an alternative diagnosis?

Thanks so much in advance x
 
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Mel9

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Welcome to PR ! Although some doctors claim there is no Lyme disease (caused by Borrelia species) this is not so. And it is now thought that the disease can be transmitted to new babies by infected mothers
 
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Hip

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  • I've been diagnosed with CFS and POTS for years, no sudden onset, and it runs in my family
  • My doctor suggested we get tested for Lyme (even though in Australia it isn't recognised, the tests were sent away to Germany to test for rickettsia)
Have you been tested for the usual suspects in ME/CFS: coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6 and cytomegalovirus? Those are the pathogens ME/CFS specialist doctors will normally check you for, and treat you accordingly if you have a chronic active infection with any one of these viruses. More info on testing in this roadmap of chronic fatigue syndrome treatment.



The test for me and all my family came back a clear positive
I hope you did not get tested for Borrelia at ArminLabs for Lyme, because they seem to find almost everybody positive, even perfectly healthy people. There was a recent journalistic enquiry into ArminLabs, where a group of healthy journalists sent their blood samples to ArminLabs to be tested, and all came back positive for Lyme.

Lyme does not exist in Australia, so presumably all you family should have tested negative for Lyme, unless you were exposed while in another country.

There may be a tick-borne Lyme-like illness in Australia though, but it's not caused by Borrelia.
 
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Ema

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I was treated with high dose antibiotics for Lyme disease for almost 3 years. I tolerated the treatment pretty well (with the exception of Flagyl!) but ultimately it did not improve my health.

I think we will find that Lyme is a lot like EBV etc, in that we are almost all exposed to it by adulthood, but it doesn't make everyone sick. I think chronic Lyme comes from immune system dysregulation and loss of tolerance more so than an active infection (unlike acute Lyme disease). Both Dr Klinghardt and Dr Vincent say that the problem in Lyme isn't the bugs so much as our response to them.

It's a hard choice to decide to go on antibiotics and risk your gut health with so much uncertain about the testing and diagnosis. Some doctors like to do an antibiotic trial with patients to see if it improves their symptoms. However, some patients find it hard to tell, because of the side effects of the antibiotics and the die-off effect.

That said, I know at least one person who feels like the antibiotics were a life-saving treatment for her.

All in all, I have some regrets about staying on antibiotics for so long, but I don't regret trying them. Until we know what MECFS really is, all we can do is try to identify likely treatment targets and then make an informed decision about the risks in trying them.
 

ljimbo423

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The test for me and all my family came back a clear positive
Hi AdAstraPerAspera-

Where you and your whole family came back positive for lyme, in Australia, where it isn't suppose to exist, seems like a big red flag.

I live in the U.S. in New England, where lyme disease is extremely prevalent.

If my whole family tested positive for lyme disease I would be very unlikely to believe it. I personally think many of the tests for lyme disease are unreliable.

I hope you consider this diagnosis very carefully. Months or years of antibiotics can be devastating to the healthy bacteria in the gut- (the microbiome).

Jim
 

pibee

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you did Elispot for Lyme?
it is important how high your results were, I dont take really seriously borderline results.
also Westernblot?
 

pibee

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I hope you did not get tested for Borrelia at ArminLabs for Lyme, because they seem to find almost everybody positive, even perfectly healthy people. There was a recent journalistic enquiry into ArminLabs, where a group of healthy journalists sent their blood samples to ArminLabs to be tested, and all came back positive for Lyme.
.
Do you have any other source of this except TV report? Because I'm not sure TV is so reliable source to spread, possible, misinformation.
I mean, I think these tests are still done based Bells curve and 2 standard deviations cut off.
In fact vast majority results I've seen are 2 or 1 (with borderline being 2). While Lyme people tend to have very high, some even 50.
 

Hip

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Do you have any other source of this except TV report?
Several years back the billionaire philanthropist John Caudwell had himself and 11 members of his family tested for Lyme at ArminLabs, and they all came back as positive. He was so concerned, he set up a Lyme disease charity. That raised alarm bells with me already, because Borrelia is not transmissible by normal social contact, so it's very hard to explain how all 11 were positive.

With seropositivity for Borrelia being around 11% in a Lyme endemic area (and lower in non-endemic areas), the chances of all 11 members of his family being positive for Lyme are (11/100)^11, which works out as 38 billion to 1 against. In other words, almost vanishingly improbable.


Then more recently some healthy journalists submitted their blood samples to ArminLabs, and all were positive (see here).

Now we have @AdAstraPerAspera's family from Australia — a country where there is no Borrelia — again all testing positive for Lyme at a lab in Germany, which is probably ArminLabs.



I recently wrote to John Caudwell's Lyme disease charity to warn them about the fact that ArminLabs seems to find far too many people to be positive for Borrelia. The charity told me that they "have been aware of this for quite some time".
 
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Mel9

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Several years back the billionaire philanthropist John Caudwell had himself and 11 members of his family tested for Lyme at ArminLabs, and they all came back as positive. He was so concerned, he set up a Lyme disease charity. That raised alarm bells with me already, because Borrelia is not transmissible by normal social contact, so it's very hard to explain how all 11 were positive.

With seropositivity for Borrelia being around 11% in a Lyme endemic area (and lower in non-endemic areas), the chances of all 11 members of his family being positive for Lyme are (11/100)^11, which works out as 38 billion to 1 against. In other words, almost vanishingly improbable.


Then more recently some healthy journalists submitted their blood samples to ArminLabs, and all were positive (see here).

Now we have @AdAstraPerAspera's family from Australia — a country where there is no Borrelia — again all testing positive for Lyme at a lab in Germany, which is probably ArminLabs.



I recently wrote to John Caudwell's Lyme disease charity to warn them about the fact that ArminLabs seems to find far too many people to be positive. The charity told me that they "have been aware of this for quite some time".

There is Borrelia in Australia. I will try to find some evidence when I feel better.
 

Hip

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There is Borrelia in Australia. I will try to find some evidence when I feel better.
I read that there may be a Lyme-like disease in Australia, possibly caused by tick bites, but from a bacterium different to Borrelia.

This 2016 paper says:
Only in one instance has a Lyme Borreliosis-causing Borrelia species been cultured from an Australian patient or animal. This patient had a history of travel to a Lyme endemic area of the northern hemisphere so overseas acquisition cannot be ruled out.
 
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pibee

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Several years back the billionaire philanthropist John Caudwell had himself and 11 members of his family tested for Lyme at ArminLabs, and they all came back as positive. He was so concerned, he set up a Lyme disease charity. That raised alarm bells with me already, because Borrelia is not transmissible by normal social contact, so it's very hard to explain how all 11 were positive.

With seropositivity for Borrelia being around 11% in a Lyme endemic area (and lower in non-endemic areas), the chances of all 11 members of his family being positive for Lyme are (11/100)^11, which works out as 38 billion to 1 against. In other words, almost vanishingly improbable.


Then more recently some healthy journalists submitted their blood samples to ArminLabs, and all were positive (see here).

Now we have @AdAstraPerAspera's family from Australia — a country where there is no Borrelia — again all testing positive for Lyme at a lab in Germany, which is probably ArminLabs.



I recently wrote to John Caudwell's Lyme disease charity to warn them about the fact that ArminLabs seems to find far too many people to be positive for Borrelia. The charity told me that they "have been aware of this for quite some time".

Yes I know, all anegdotal 'evidence'.

Speaking of Caudwell it's also worth noting that one of his recent posts on Facebook is about how he got better with antibiotics then antivirals then antibotics, and diet change, but he thinks he wouldnt be better without antibiotics. So maybe he had Lyme :)

I am not defending the test but dismissing it with so little arguments is also silly to me.


And again I dont see a reason to skip steps, better ask Arminlabs (also IMD Berlin does LTT) how they determine the cut off... if it's 2 standard deviations, how can most people get positives?
 
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duncan

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With seropositivity for Borrelia being around 11% in a Lyme endemic area (and lower in non-endemic areas), the chances of all 11 members of his family being positive for Lyme are (11/100)^11, which works out as 38 billion to 1 against. In other words, almost vanishingly improbable.
The circular reasoning here is commonplace in traditional Lyme circles. You are assuming the accuracy of conventional testing carries with it adequate safeguards - many believe it does not, and that number is growing.

I read that there may be a Lyme-like disease in Australia, possibly caused by tick bites, but from a bacterium different to Borrelia.
One must take care of wording, sadly. This is similar to the STARI debate in the Mid-US. "Borrelia" covers many variations, only one of which is technically "Lyme Borreliosis-causing", although there are certainly more that generate Bb sensu stricto symptoms..
 
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Hip

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I am not defending the test but dismissing it with so little arguments is also silly to me.
We are not looking at ArminLabs in isolation, but in the context of the whole Lyme testing controversy.

Many labs offering non-standard unvalidated tests are considered suspect. This includes IGenex Lab in the US, whose results Dr John Chia considers to be "bullshit". So there is already a great uncertainty and suspicion about these non-standard labs; thus in this context, when you hear the report of all 11 members of one family all being positive for Lyme against all probabilities, it only adds further doubt.



Yes I know, all anegdotal 'evidence'.
You can contact Armin and ask him out of all the Borrelia tests he has ever conducted, how many were negative, and how many were positive. Then you can get a non-anecdotal statistic.

I will point out that ArminLabs test for coxsackievirus B is completely inadequate and highly misleading. See this post for details. So if that is how he conducts coxsackievirus B testing, it does not bode well for his Lyme tests.



The circular reasoning here is commonplace in traditional Lyme circles. You are assuming the accuracy of conventional testing carries with it adequate safeguards - many believe it does not, and that number is growing.
Unfortunately I don't know enough about Lyme testing to respond in any depth. But I will ask you (or anyone else): if most people test positive for Lyme in tests such as the ones provided by ArminLabs, then what is the utility of testing? Does it actually tell you anything? If not, you may as well save your money.
 

duncan

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But I will ask you (or anyone else): if most people test positive for Lyme in tests such as the ones provided by ArminLabs, then what is the utility of testing? Does it actually tell you anything? If not, you may as well save your money.
Your questions arguably could be just as aptly applied to the CDC-recommended 2T testing, and the NHS C6 ELISA.

It would seem there may be an all-around paucity in reliable Lyme diagnostics. The implications suggest we don't really have a handle on how widespread a problem Borrelia is.
 

Hip

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Your questions arguably could be just as aptly applied to the CDC-recommended 2T testing, and the NHS C6 ELISA.
It could, but personally I'd prefer the CDC recommended two-tier testing, because at least if you test positive on that, you will know with a high degree of certainty that you have Lyme.
 

duncan

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could, but personally I'd prefer the CDC recommended two-tier testing, because at least if you test positive on that, you will know with a high degree of certainty that you have Lyme.
Sorry, @Hip , but that is not accurate. There is a host of doctors that would declare any Lyme patient who was/is 2T positive AFTER CDC-recommended treatment as being cured of Lyme.
 

Hip

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Sorry, @Hip , but that is not accurate. There is a host of doctors that would declare any Lyme patient who was/is 2T positive AFTER CDC-recommended treatment as being cured of Lyme.
Isn't that a different issue and controversy? Namely the controversy in which one camp believe post-treatment Lyme disease syndrome (PTLDS) involves an ongoing infection with Borrelia, and the other camp believe there is no Borrelia infection to be found in PTLDS, and the illness is assumed to have some other non-infectious cause.

So if you get a positive result on CDC recommended two-tier test, the first camp are going to interpret that as evidence for the Borrelia infection, whereas presumably the second camp are going to interpret it as just the antibodies from a past infection that is no longer present.

In other words, the controversy is about the interpretation of the test, but not about the accuracy of the test itself.
 

duncan

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Isn't that a different issue and controversy?
No, it is a direct reference to you claiming a positive on the 2T would mean you had a high degree of certainty that you had Lyme. It doesn't, as most insurance claims workers will be happy to point out.

As for the PTLDS vs active Lyme thing: Sure, that's in play. But also in play are antigenic variations and different strains and autoantibodies interacting with WB bands and monopolistic diagnostic practices and several other variables I cannot think of at the moment - all of which contribute to muddying the waters as to who has Lyme, and who doesn't.
 

Hip

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No, it is a direct reference to you claiming a positive on the 2T would mean you had a high degree of certainty that you had Lyme. It doesn't, as most insurance claims workers will be happy to point out.
What insurers say is of no particular relevance to medical science. And I am referring to the camp that view PTLDS as an ongoing Borrelia infection: this camp would view a positive result on the CDC recommended two-tier test as definitive evidence for Lyme.