Confused about Lyme

[duncan]

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.

I suspect most people who view PTLDS as an ongoing Borrelia infection refer to it as Borrelia or Lyme - not as PTLDS.

I would also remind you that what insurers have to say can absolutely influence medical science - or more correctly, scientists and their funding. Money matters. Just take a look at the lawsuite down in Houston against the principal authors of the IDSA Lyme Guidelines, and the accusations of influence peddling from insurance providers.

 

[pibee]

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.

Tragedy is, you wont know if you have it still after 3 weeks of IV ceftriaxone, and the test is still positive. So for chronic patients it is not very helpful, even CDC positive raises many questions when it's chronic condition.

I dont see many ME/CFS patients recovering with Lyme treatment, even when very positive labwork. My ME didnt recover w lyme treatment, neuropathies+psychiatric symptoms did, and just during IV ceftriaxone fatigue was much better.
I guess having had long untreated Lyme is either triggering for my genetically predisposed autoimmunities, and making me more vulnerable to viruses.
Personally it ends up I benefit from both antivirals and antibiotics, but I'm not convinced either is enough

 

[Hip]

I dont see many ME/CFS patients recovering with Lyme treatment, even when very positive labwork.

Indeed, which makes you wonder why people bother to test for Borrelia in the first place, given that (a) the testing is unreliable, and (b) the treatment usually does not help.

Although there was one intriguing anecdotal report of a Lyme patient recovering via mild hyperbaric oxygen therapy.

 

[pibee]

Indeed, which makes you wonder why people bother to test for Borrelia in the first place, given that (a) the testing is unreliable, and (b) the treatment usually does not help.

Many, many reasons...

1) if you have Lyme, you need to treat it as it is progressive, at least was in my case and the progression was stopper and reversed except ME.
i wouldnt probably have ME if treated earlier, because I, well, didnt.

2) in my country and maybe many others, there is easier to hear about Lyme than about ME/CFS - I heard 2 years before of Lyme. Of course I heard about "CFS" but never thought that can be serious enough, because it was portrayed as burnout.

3) people with Lyme actually have much more symptoms than just ME/CFS. ME can be just part of the symptoms. I noticed on groups all complain of fatigue but its not usually dominant like in me. .. this was always weird to me, before I knew about ME/CFS.

 

[Hip]

3) people with Lyme actually have much more symptoms than just ME/CFS.

Can you give some example of symptoms that Lyme patients have which ME/CFS patients don't? I know about things like Bell's palsy.

 

[pibee]

Can you give some example of symptoms that Lyme patients have which ME/CFS patients don't? I know about things like Bell's palsy.

Anyone with ME can have such symptoms but people with Lyme dont have to have ME (PEM..), at least not significant enough fatigue to call it ME.

Since ME definition, esp CCC, is so broad that it basically includes each and every neurological, muscular, psychiatric problem, hard to say what Lyme patients have and ME dont.

But for example some with lyme have very big pain problems, agoraphobia, homicidal thoughts , extreme night sweats, neuropathies and their fatigue is just consequence of that, it is not actually ME, and those people i noticed improve with antibiotics..

Was just trying to say I notice some difference in my ME and usual fatigue from Lyme.


p.s. I had Bells palsy (quite atypical, very mild but one brow has dropped and one side of face lost muscular tone, later also my whole face was like botoxed), and trigeminal neuralgia, but I'm not even convinced anymore it was from Lyme, could be also herpes reactivation. But my facial numbness etc., went away with bactrim, 10 antibiotics before bactrim did nothing regarding that.

 

[Mel9]

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:

Thanks Hip. That review paper includes the PhD study by Wills (1991) I was thinking of. The authors of the review paper doubt the validity of the Wills study but I am not so sure they are correct to doubt it. I think our main problem in Australia is that very little research has been done in the past 20 years or so. E.g the authors admit that no one has yet investigated ticks of sea birds along the east Coast for Borrelia. The Gofton study (2015) did find a new species of Borrelia but many more research studies are needed to find the Borrelia species causing illness in Australia. Australian Patients don't really care whether their Borrelia infection is caused by exactly the same species as overseas: different species seem to have the same long term effect.

 

[Mel9]

Another thought regarding the 2016 review paper by Chalada et al. - almost every Australian goes 'overseas' at some stage in their lives.

So, even if there were absolutely no Lyme-like bacteria here, (unlikely as that is) people have been infected overseas.

Yet, Australian medical organisations tend to dismiss ANY Borrelia infections of Australian citizens, as though there were some sort of magical 'you shall not pass' whenever Lyme -like patients travel through our borders.

 

[mattie]

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)

 

[Hip]

Anyone with ME can have such symptoms but people with Lyme dont have to have ME (PEM..), at least not significant enough fatigue to call it ME.

Yes, ME/CFS seems to be one disease that chronic Borrelia infections may cause, but as you say, chronic Borrelia patients may have not necessarily have ME/CFS.

Personally I think the big mistake many people are making is not undertaking the appropriate testing for the enteroviruses associated with ME/CFS, namely coxsackievirus B and echovirus.

These two viruses are hard to test for, yet are probably the most common cause of ME/CFS (at least according to Dr Chia's analysis). So if you have ME/CFS-like symptoms, you would want to test for all the viruses commonly associated with ME/CFS, including coxsackievirus B and echovirus, but also Epstein-Barr virus, HHV-6, cytomegalovirus and parvovirus B19.

Yet many people get tested for the herpesviruses (EBV, HHV-6 and cytomegalovirus), but neglect to get tested for the enteroviruses (coxsackievirus B and echovirus).

This is partly because the appropriate tests for coxsackievirus B and echovirus are hard to find: enterovirus expert Dr Chia found that only antibody tests by the neutralization method (the ARUP Lab tests use neutralization) are reliable for detecting chronic coxsackievirus B and echovirus.



So while patients with ME/CFS symptoms fret about Lyme, and all the uncertainly involved in Lyme testing, they often completely miss arguably the most likely cause for their ME/CFS symptoms: chronic coxsackievirus B and echovirus.

Australian Patients don't really care whether their Borrelia infection is caused by exactly the same species as overseas: different species seem to have the same long term effect.

Sure, though from the point of view of testing, if a Lyme-like disease in Australia is caused by a different tick-borne species of bacteria, those patients are not going to test positive for Borrelia on any Lyme test. So I guess the most important thing at present would be to try to identify this mystery bacterium in Australia, and if it really seems to be causing an illness similar to Lyme disease, to develop blood tests for that bacterium.

 

[Hip]

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

Which lab in Germany where you and you family tested for Lyme, @AdAstraPerAspera? Was it ArminLabs? How many family members were tested?

 

[pibee]

Yes, ME/CFS seems to be one disease that chronic Borrelia infections may cause, but as you say, chronic Borrelia patients may have not necessarily have ME/CFS.

Personally I think the big mistake many people are making is not undertaking the appropriate testing for the enteroviruses associated with ME/CFS, namely coxsackievirus B and echovirus.

These two viruses are hard to test for, yet are probably the most common cause of ME/CFS (at least according to Dr Chia's analysis). So if you have ME/CFS-like symptoms, you would want to test for all the viruses commonly associated with ME/CFS, including coxsackievirus B and echovirus, but also Epstein-Barr virus, HHV-6, cytomegalovirus and parvovirus B19.

Yet many people get tested for the herpesviruses (EBV, HHV-6 and cytomegalovirus), but neglect to get tested for the enteroviruses (coxsackievirus B and echovirus).

This is partly because the appropriate tests for coxsackievirus B and echovirus are hard to find: enterovirus expert Dr Chia found that only antibody tests by the neutralization method (the ARUP Lab tests use neutralization) are reliable for detecting chronic coxsackievirus B and echovirus.



So while patients with ME/CFS symptoms fret about Lyme, and all the uncertainly involved in Lyme testing, they often completely miss arguably the most likely cause for their ME/CFS symptoms: chronic coxsackievirus B and echovirus.

so if it's enterovirus, how successful the treatment is?

 

[Hip]

so if it's enterovirus, how successful the treatment is?

Dr Chia reports that around 30% of patients with enterovirus will make major improvements with a Th1/Th2 immunomodulator called oxymatrine. Ref: 1

The Chia finds lamivudine (Epivir) 150 mg twice daily results in minor benefits for 1 in 3 enterovirus patients after a few months.

And more recently he has been using tenofovir (Viread) 300 mg daily, which he says results in significant benefits in around 1 in 3 patients after around 3 months, and often resulting in major improvements.

 

[frederic83]

There is something with the 1/3 response. In the RTX trial too. Is it always the same subgroup that responds ?

 

[Hip]

There is something with the 1/3 response. In the RTX trial too. Is it always the same subgroup that responds ?

The methylation protocol also has just under 1 in 3 patients making major improvements. But for LDN, the major improvements occur for a smaller group, like I would guess say 1 in 10.

 

[CCC]

Hi @AdAstraPerAspera Where are you in Australia?

I'm coming in a bit late to this conversation, but Lyme in the general sense as well as coinfections do exist in Australia. It has become a political football, to the detriment of people who are sick. There has even been a Senate inquiry about it, and that report makes for some eye-opening reading (unless you are a political thriller/conspiracy theory junkie - then you'll enjoy a good read, or a good cry if it affects you).

There is no medical professional within 250km of where we live, so we ended up with mum diagnosis (based on a distinctive Bartonella rash), later confirmed by a Sydney doctor.

My approach was to try the Buhner herbs, and they have helped a lot. We also did a course of antibiotics, and we might need to do another, but they are hard on the body. I find the herbs are much easier to manage and monitor.

So back to Lyme in Australia.
1. That oft-cited 'there is no Borrelia' study had some serious flaws, but I can't remember what any more).
2. People travel to Lyme endemic areas, come back with asymptomatic infections, get bitten by a tick (or sucked by a leech according to one source), and pass the bacteria on, then someone who has never travelled outside Australia comes past. Then that person goes home and shares the love with fleas, nits or other bugs from the arachnid family.

So, how to test in a country that decries the existence of something?

The easiest, low cost way is to try a few Buhner herbs and see what happens. Fortunately for us, we are a family of very fast responders, so it was very obvious that something worked. This did come after a year of the Freddd methylation protocol, so i think from reading we had a much easier time as a result.

 

[Hip]

Lyme in the general sense

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:

Research published by Professor Peter Irwin at Murdoch University in Perth describes new bacteria in ticks collected from animals in Australia.

Professor Irwin yesterday said his research was expected to go on for years and would continue to inform medical debate about tick-borne illness in this country.

“We are not doctors looking at the medical side of the issue but our work is informing that,” he said.

“For three years we have been looking at ticks and what bugs they carry and could be transmitting to people.”

He said Lyme disease was caused by Borrelia Burgdorferi and that bacteria had not been found in Australia.

“Our research has confirmed that. We have tested thousands of ticks,” he said.

“The question of what illnesses can be caused by the bacteria carried by ticks in Australia is the multi-million dollar question.

“I would have to say at this stage of my research it is plausible that people can get sick from a tick bite in Australia - but that illness is not Lyme disease.”

People travel to Lyme endemic areas, come back with asymptomatic infections, get bitten by a tick (or sucked by a leech according to one source), and pass the bacteria on, then someone who has never travelled outside Australia comes past.

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.

 

[duncan]

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

No, according to the portion of the article you reference, Borrelia Burgdorferi has not been found. There are many other forms of Borrelia, several of which are known to cause variations of Lyme disease, e.g. Afzelii, Garinii, and new species are still being found: case in point, Borrelia Mayonii.

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.

Humans can be infested with ticks, although this is immaterial - it only takes one infected tick bite. Where I live, more than 50% of ticks carry disease, so this is a bad lottery to play.

The point is, even though we all do it, you should not use Lyme and Borrelia and Borrelia Burgdorferi interchangably when trying to prove the existence of a specific strain/species vs a general spirochete. If you do, it can get confusing very quickly, and I've seen experts fall into this trap. Each means something a little different than the other. Even Bb can be distinguished as Bb Ss and Bb Sl

 

[Hip]

No, according to the portion of the article you reference, Borrelia Burdorferi has not been found. There are many other forms of Borrelia, several of which are known to cause variations of Lyme disease, e.g. Afzelii, Garinii, and new species are still being found: case in point, Borrelia Mayonii.

Thank you for the clarification. Yes, Borrelia burgdorferi, the cause of Lyme disease, has not been found in Australia, but there are other Borrelia species known to exist there.

The review paper mentioned above says:

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.

Humans can be infested with ticks

Have you got a reference for that?

Maybe back in the days of hairy Neanderthals there may have been some humans carrying ticks, but I doubt you will find tick infestations with modern human hygiene.

Where I live, more than 50% of ticks carry disease

I expect only by those dubious tests such as IGenex. You'd probably get more accurate results by going to a fortune teller.

 

[duncan]

Have you got a reference for that?

As kids, we'd go romping through the tall grass and daily have several ticks removed. Once as an adult, I went camping for several days, and when I returned I removed over 100 ticks. Does the presence of 100 attached deer ticks qualify as an infestation?

I expect only by those dubious tests such as IGenex. You'd probably get more accurate results by going to a fortune teller

No, you are wrong. 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. You can pretty much take these estimates to the bank.