Confused about Lyme

[Hip]

Does the presence of 100 attached deer ticks qualify as an infestation?

It's not really a constant population of ticks living on your skin as you get with animals. It only occurred when you went camping. And were those ticks on your trousers and socks, or were they actually on your skin, biting you?

Another point to mention is that because Borrelia is scarce in the body and blood in those who carry it (hence the difficulty in detecting Borrelia infection using blood tests), when a tick from say a camping trip bites a human with Borrelia, what are the chances the tick is infected with Borrelia, given its scarcity in human blood? Yes, when a tick lives on a Borrelia-infected animal, and is constantly biting the animal and feeding from the blood, there would be a higher chance the tick picks up a Borrelia infection from the animal.

But in the case of a single bite of a human who carries Borrelia, how likely is it that the tick picks up the infection from the human? And how likely is it that the same tick survives (because we normally kill the ticks that we find biting us), and then leaves that human and goes off and bites another human? The whole scenario continues to look highly improbable.

This is done by state reporting agencies throughout counties in Lyme endemic areas in the US by professional entomologists, i.e. they are gauging the prevalence of Lyme in ticks, not humans.

Sorry, I misread your earlier post, and thought you were referring to humans, not the ticks.

 

[duncan]

were those ticks on your trousers and socks, or were they actually on your skin, biting you?

They were all attached to my skin and feeding. I had to go to a clinic to have them all removed, so I actually have a clinical record. @Hip , you don't need to have them constantly living on you. Typically that doesn't even happen. They feed and engorge, then they drop off. Regardless, it just takes one on you for a certain amount of (debated) time, and an infected tick can communicate its disease.

when a tick from say a camping trip bites a human with Borrelia, what are the chances the tick is infected with Borrelia, given its scarcity in human blood?

This is a good question, and the short answer would be, "it depends at least in part on geography, type of tick, and species of Borrelia." But I don't think anyone really knows. I've seen studies as low as 2% of bites end in Lyme, but I have little confidence in that number (which if memory serves me came from Norway).

You keep referring to "bites". They really don't just bite you - they feed. Hence so many people in Lyme endemic areas rush to find out if a tick has attached itself; the quicker you remove it, the higher your chances of not getting infected. But even this is hotly debated with the IDSA/CDC saying it could take as long as 36 - 48 hours to transmit, but others saying it can happen almost immediately.

 

[Hip]

I've seen studies as low as 2% of bites end in Lyme, but I have little confidence in that number (which if memory serves me came from Norway).

I am talking about the other way around: not tick-to-human transmission of Borrelia, but human-to-tick transmission. That is to say, when a tick that is complete free of Borrelia feeds on a human who is infected with Borrelia, how likely is it that the tick acquires Borrelia?

Because for this scenario of person-to-person transmission of Borrelia burgdorferi in Australia, where an Australian goes abroad and contracts a Borrelia infection and then returns to Australia, for him to transit Borrelia to another person by ticks first requires the tick that bites him to be infected, and then it requires that this tick goes off to another human, and bites them, and passes on the infection.




By the way, @duncan, given you have ME/CFS symptoms, were you ever tested for all the viruses linked to ME/CFS, such as coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus and parvovirus B19?

Chronic coxsackievirus B and echovirus can only be reliably tested for by antibody neutralization tests, such as those provided by ARUP Lab. So if you were tested by other methods, that may not be reliable.

Before anyone goes down the "maybe I have Lyme" route, they really need to rule out these other infectious causes of their ME/CFS symptoms.

Unlike Lyme testing, testing for these viruses is very reliable (provided you use the right tests). So once you take these viral tests, you can know with high degree of certainty whether you have these viruses as active infections or not.


Because Lyme disease hits all the headlines, and because people get really bogged down in all the complexities and uncertainties of Lyme testing, my impression is that they may forget about the other possible causes of ME/CFS, especially coxsackievirus B and echovirus, which even non-Lyme ME/CFS patients inexplicably often neglect to test for.

 

[duncan]

when a tick that is complete free of Borrelia feeds on a human who is infected with Borrelia, how likely is it that the tick acquires Borrelia?

The NIH is trying to diagnose patients this way - xenodiagnosis. I suspect if you check out the writings of Marques from the NIH it will give some insight into your question. In real life settings, this seems highly unlikely but certainly possible, especially among spouses.

By the way, @duncan, given you have ME/CFS symptoms, were you ever tested for all the viruses linked to ME/CFS, such as coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus and parvovirus B19?

Chronic coxsackievirus B and echovirus can only be reliably tested for by antibody neutralization tests, such as those provided by ARUP Lab. So if you were tested by other methods, that may not be reliable.

Sure. I tested abnormally high for several.

Because Lyme disease hits all the headlines, and because people get really bogged down in all the complexities and uncertainties of Lyme testing, my impression is that they may forget about the other possible causes of ME/CFS, especially coxsackievirus B and echovirus, which even non-Lyme ME/CFS patients inexplicably often neglect to test for.

Agreed.

 

[Hip]

Sure. I tested abnormally high for several.

Which ones? Did you have elevated antibody titers that indicate active infection?

If so, why do you attribute your ME/CFS symptoms to Borrelia, when they in fact might be caused by these active viral infections?

And have you ever tried antivirals and immunomodulators to address these viral infections?

 

[duncan]

Which ones? Did you have elevated antibody titers that indicate active infection?

All of them, off and on over the past five or so years. Specifically Coxsackie B2, B3 and B6, and all of the rest you listed (even parvovirus B19) have been elevated enough to get the attention of a couple of world-class ME/CFS experts. Not sure if they qualify as active, but they were abnormally high.

If so, why do you attribute your ME/CFS symptoms to Borrelia, when they in fact might be caused by these active viral infections?

I am open-minded to the cause of my symptoms, including the idea that they may have more than a single source.

And have you ever tried antivirals and immunomodulators to address these viral infections

Yes, and yes. In fact, I am still on Valtrex and LDN and Plaquenil.

Have you ever been tested for Lyme other than with an ELISA? Have you ever had a Western Blot run?

Sorry, I feel as if we are hijacking this thread. SORRY everyone.

 

[Hip]

All of them, off and on over the past five or so years. Specifically Coxsackie B2, B3 and B6, and all of the rest you listed (even parvovirus B19) have been elevated enough to get the attention of a couple of world-class ME/CFS experts. Not sure if they qualify as active, but they were abnormally high.

The threshold titer value at which ME/CFS specialists diagnose an active viral infection are given in my new concise mini roadmap.

For example, if you were tested at ARUP lab for coxsackievirus B, then titers of 1:320 and higher in the ARUP tests indicate an active infection that may be the cause of your ME/CFS. If you have such an active CVB infection, then oxymatrine is certainly worth considering.

Have you ever been tested for Lyme other than with an ELISA? Have you ever had a Western Blot run?

My ME/CFS was triggered by a viral infection which also passed via normal social contact to lots of other people, and thus could not have been Lyme.

I have not been tested for Lyme by any test, but it is on my to-do list, though not a priority. I already took a 1 month course of doxycycline to see if that might help, which it did not.

I would only consider the standard CDC test (or the NHS equivalent in the UK); I would not touch anything like the ArminLabs test. I'd prefer to give my money to a fortune teller rather than use ArminLabs / Igenex, etc.

 

[duncan]

if you were tested at ARUP lab for coxsackievirus B, then titers of 1:320 and higher in the ARUP tests indicate an active infection that may be the cause of your ME/CFS. If you have such an active CVB infection, then oxymatrine is certainly worth considering

I wasn't tested at ARUP, and I know you recommend them.

I would only consider the standard CDC test (or the NHS equivalent in the UK); I would not touch anything like the ArminLabs test. I'd prefer to give my money to a fortune teller rather than use ArminLabs / Igenex, etc.

I usually only recommend two: the C6, which the NHS does, and the Western Blot, which can give you better odds at gaining some personal insight to make your own call.

Then again, none of these looks at other TBDs like babesiosis or bartonella - not that we haven't a smorgesborg of pathogens to scrutinize without them.

 

[Hip]

I usually only recommend two: the C6, which the NHS does, and the Western Blot, which can give you better odds at gaining some personal insight to make your own call.

Thanks, I will put that to my GP next time, and hopefully get tested for free.

I wasn't tested at ARUP, and I know you recommend them.

It's Dr Chia that found the antibody test by neutralization (rather than by ELISA, IFA or CFT) easily detects the chronic coxsackievirus B and echovirus infections in ME/CFS, and only ARUP and Cambridge Biomedical in the US to my knowledge offer these neutralization-type antibody tests. But there may be other US labs that do neutralization. If you like, you can post your enterovirus results on this thread, and I'll do my best to interpret them.

 

[CCC]

Lyme in the "general sense" means the genus Borrelia and all possible coinfections.

In our case, we have two definite diagnoses for Bartonella. The idea that Borrelia spp cannot, has not and never will be found in the wild in Australia is highly contentious and, as I indicated, has been the subject of a senate inquiry. The report has been published, so it would be great if you could read that before making claims about the Australian situation.

In fact. It's these claims that it couldn't possibly be Lyme, Lyme-like or a lyme coinfection (now you know why I said "in the general sense") that leave people very, very sick but undiagnosed and untreated.

I like your idea of one tick not being able to start an epidemic, but we were thinking more along the lines of thousands of travellers bringing the disease (Lyme, lyme coinfections, and Lyme like diseases) back to very popular bushwalking areas - repeatedly. Because of our professional backgrounds, we've been speculating. Let's face it, the disease spreads somehow.

Finally, I usually have a lot of respect for anything you say - you have changed our life with some of your ideas - but I'm rather upset with your assumptions about us without understanding how many doctors we've seen and how many tests we've had and where we've travelled outside Australia. The doctors might not have tested for everything, but we're knocking off each thing as we find it/exclude it.

We've travelled overseas enough to not enter the "you can't have Lyme because you've never left Australia" argument. The Bartonella rash is distinctive and my mum diagnosis has been since confirmed by two medical professionals. I'm not sure why you would want to discount that. I'm so glad we haven't had to have this discussion here with doctors. It's already hard enough to find a doctor with an idea.

And now I'll circle back to our success with the Buhner herbs (Buhner is a herbalist, and he recommended a series of readily available herbs that you don't buy from him). They are working at the moment. I'd like things to be improving more quickly. I'd like to investigate other things as we notice them, so we're not there yet, but I am certainly not discounting something that is working just because we live in Australia where all overseas diseases magically fall off as we land back at Sydney international airport.

What is Lyme "in the general sense"? Lyme disease is caused by Borrelia.

There may be a Lyme-like illness in Australia, but if it is not caused by Borrelia, it is not Lyme.

Borrelia has not be found in the wild in Australia; this article says:

Borrelia is not spread by normal social contact, and your idea of Borrelia being transmitting by a single tick making a single bite on a human infected with Borrelia abroad is one of those trillion to one improbabilities. Humans are not infested with ticks, whereas the animal reservoirs of Borrelia — the birds, rodents, mammals, etc that carry Borrelia — may each carry hundreds of ticks constantly feeding on their blood, which is why you find these ticks carry Borrelia.

The reason it is claimed that there is no Borrelia in Australia is because when Australian tick are examined, they are never found to carry Borrelia.

What you do have in Australia is coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19, Ross River virus — all of which are linked to ME/CFS. So if you are an Australian with ME/CFS symptoms following an infection, your first port of call would be testing for an active infection with any of these, rather than speculating that you may have picked up Lyme disease by some trillion to one human to human transmission.

 

[Hip]

The idea that Borrelia spp cannot, has not and never will be found in the wild in Australia is highly contentious and, as I indicated, has been the subject of a senate inquiry. The report has been published, so it would be great if you could read that before making claims about the Australian situation.

Perhaps you would like to summarize it, so that I don't have to do all the legwork. The senate enquiry you mentioned is found here.

The 2016 paper I got my information from above is a review paper (a review paper is one that summarizes the studies and evidence on a particular subject). This review paper looks at the question of whether there is a Lyme-like illness in Australia.

In case you missed the conclusion of that review paper when I posted it earlier, I'll post it again:

Suggestions that a Lyme-like disease may exist in Australia remain controversial and no study to date has definitively identified the presence of a Borrelia species infecting humans that have a locally acquired Lyme-like syndrome.

It is unclear whether the causative agent of this purported condition is a B. burgdorferi s. l. related organism, another pathogen altogether or of non-infectious aetiology.

If you don't agree with that review, or think it has missed some important new evidence, please explain, and provide a link to the new evidence.

Finally, I usually have a lot of respect for anything you say - you have changed our life with some of your ideas - but I'm rather upset with your assumptions about us without understanding how many doctors we've seen and how many tests we've had and where we've travelled outside Australia. The doctors might not have tested for everything, but we're knocking off each thing as we find it/exclude it.

I have not made any assumptions about your case, because nothing I wrote above relates to your situation.The discussion above was about whether Borrelia burgdorferi exists in Australia. I don't really have any knowledge of your medical circumstances, so couldn't comment on your situation even if I wanted to. Though if you provide some details, though, I'd be happy to read them.

We've travelled overseas enough to not enter the "you can't have Lyme because you've never left Australia" argument. The Bartonella rash is distinctive and my mum diagnosis has been since confirmed by two medical professionals. I'm not sure why you would want to discount that. I'm so glad we haven't had to have this discussion here with doctors. It's already hard enough to find a doctor with an idea.

Where above have I discounted that you have Bartonella? You said that you have the distinctive Bartonella rash, and I have no reason to doubt that.

 

[arboretum]

There are three conditions people can mean when they talk about Lyme Disease - acute lyme disease, which is gotten from a tick, and treated with antibiotics, and doesn't last long term. Post Lyme Disease Syndrome, where symptoms persist even after the acute infection has been beaten, similar to how CFS works. It's thought that this may be a form of CFS. There isn't any evidence on an ongoing infection causing this, and long-term antibiotics have been found ineffective for this. It isn't known how this condition works. And then there are people who have other conditions, such as CFS, Multiple Sclerosis, or even possibly depression, which are causing their symptoms. They don't have either of the first two, but have been put on the chronic lyme track by irresponsible, misguided, deluded or even malicious and exploitative doctors, or desperate and vulnerable people on the internet.

Unless you've experienced acute lyme, you almost certainly fit in the third category. You either have another condition, such as CFS, or an as yet not understood or discovered condition. Following along with the chronic lyme hypothesis is a path of pain, and whilst it's totally understandable why someone would follow along with a doctor telling them that, it's simply not going to lead anywhere and it's going to cause a lot of anguish.

I used to be really attached to following hypotheses and potential treatments, but it simply isn't worth the pain and the energy. What is worth the energy is pooling what little energy I have to go out and see and socialise with people, so I can be happy.

 

[Hip]

I agree with your post, @arboretum, but would add that if you have ME/CFS symptoms, you should consider getting checked for active viral infections of coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19, because all of these are associated with ME/CFS, and are thought by some doctors to be able to cause ME/CFS. And what's more, there are treatments for these viruses that can result in major improvements to health. So that can be a more fruitful path of investigation.

Post Lyme Disease Syndrome, where symptoms persist even after the acute infection has been beaten, similar to how CFS works. It's thought that this may be a form of CFS. There isn't any evidence on an ongoing infection causing this, and long-term antibiotics have been found ineffective for this.

There is some preliminary animal evidence from a primate study showing that Borrelia persists in the tissues in post treatment Lyme disease syndrome (PTLDS); but as you say, antibiotics have been found ineffective for treating PTLDS, which is precisely what this primate study found as well. To quote from the study:

These results demonstrate that B. burgdorferi can withstand antibiotic treatment, administered post-dissemination, in a primate host. Though B. burgdorferi is not known to possess resistance mechanisms and is susceptible to the standard antibiotics (doxycycline, ceftriaxone) in vitro, it appears to become tolerant post-dissemination in the primate host.

I found this anecdote interesting: a PTLDS Lyme patient recovered from the illness after 18 months of daily mild hyperbaric oxygen treatment, using a home soft chamber. Borrelia is almost anaerobic (Borrelia is microaerophilic, meaning it can survive at very low levels of oxygen, but is poisoned at higher levels), so high levels of oxygen from hyperbaric therapy may effectively kill Borrelia.

If I had Lyme, I would consider hyperbaric oxygen therapy. Oxygen as a gas dissolved in the bloodstream will permeate deeply into all areas of the body, and so may stand a higher chance of reaching Borrelia bacteria hidden away in cells etc.

 

[duncan]

There are three conditions people can mean when they talk about Lyme Disease - acute lyme disease, which is gotten from a tick, and treated with antibiotics, and doesn't last long term. Post Lyme Disease Syndrome, where symptoms persist even after the acute infection has been beaten,

This is simply inaccurate.

First, you make no mention of Lyme stages, including Late Stage Lyme, and, more to the point, Late Stage Lyme refractory to abx, which most definitely can last long term even with extended treatments. To make a broad declaration that there is only "acute Lyme" is akin to saying there is only acute syphilis, when in fact syphilis has four stages, each presenting with its own characteristics and treatment challenges.

Second, there is a great deal of debate as to not only what causes PTLDS, but whether it even exists.

Third, there certainly is frequently evidence of ongoing infection in so-called PTLDS, but because of the nature of Lyme, it is seldom conclusive - the same can be said for acute Lyme (or rather, Early Lyme, or Early Dissemintated). It is unusual even for cases of "acute Lyme" to be conclusive. The only way it can be conclusive is to culture it, which is very rare indeed - theoretically, not even erythema migrans rashes are truly conclusive in the absence of culturing, as is demonstrated by the STARI controversy.

 

[Mel9]

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

We patients positive to Borrelia infection are often confused because so many people like to deny the infection exists, mainly because the bacterium is difficult to culture.

I would suggest you find the Lyme Disease Association of Australia website and make an appointment with a Lyme Literate doctor (there will be a waiting list but it well be worthwhile, even if you need to wait months for an appointment ).

Then, if the doctor thinks you may have a Borrelia infection, he/she will start you on antibiotics. If they do not make you feel better quickly, you (and doctor) will know that the problem is not bacterial.

 

[AdAstraPerAspera]

Have you been tested for the usual suspects in ME/CFS: coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6 and cytomegalovirus?


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.

Thank you Hip! I haven't been tested for them I don't think, I'll look into getting some done. Interesting that there's another tick borne illness - maybe that's what has led to some of the confusion. And no, it wasn't ArminLabs thankfully

 

[AdAstraPerAspera]

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.

That's a really interesting point, I often thought about that too - that maybe it's a chronic infection but not one that causes the main amount of problems, and it might be better left alone than irritated with symptom worsening treatment. I'm sorry to hear it didn't help your health I might work to get my gut health a bit better and then give them a go. Thank you!

 

[AdAstraPerAspera]

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

I thought so too, though I have heard it can be passed from mother to child, so it is possible that my mum passed it onto me and my sisters. Thanks Jim

 

[AdAstraPerAspera]

We patients positive to Borrelia infection are often confused because so many people like to deny the infection exists, mainly because the bacterium is difficult to culture.

I would suggest you find the Lyme Disease Association of Australia website and make an appointment with a Lyme Literate doctor (there will be a waiting list but it well be worthwhile, even if you need to wait months for an appointment ).

Then, if the doctor thinks you may have a Borrelia infection, he/she will start you on antibiotics. If they do not make you feel better quickly, you (and doctor) will know that the problem is not bacterial.

That's great advice, thank you Mel! I'll have a look.

 

[AdAstraPerAspera]

Elispot is unreliable.
See: http://forums.phoenixrising.me/inde...tary-undercover-in-german-lyme-clinics.55493/

Problem is: there are currently no reliable tests for Lyme. And unfortunately many lyme symptoms overlap with ME.

If you strongly suspect Lyme you could try antibiotics. If you don't respond at all I would no continue for too long as antibiotics will damage your mitochondria and gut flora. This can worsen your ME symptoms. (a lot)

I've heard that from a few people mattie, I didn't realise antibiotics damaged the gut so much. Looks like the gut is where I should be focusing for now