Confused about Lyme

[AdAstraPerAspera]

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

I checked, looks like I was told wrong (couldn't remember and asked my sister, but she got the tests confused) and they were done in Geelong - I'm just hunting out the tests to find who did it, but I know our doctor did his best to verify them as reliable. 4 of us were tested, and my mother and siblings came back positive - wondering if it was passed prenatally.

 

[AdAstraPerAspera]

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.

I barely understand a word of this haha oh dear, so much to learn

 

[AdAstraPerAspera]

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.

I'm from Melbourne, vic Thank you for the suggestion - I'll try to find some Buhner herbs, I like the more gentle, natural approaches. What's the Freddd Methylation protocol?

 

[Hip]

4 of us were tested, and my mother and siblings came back positive - wondering if it was passed prenatally.

That is a possibility, according to this article, but with many Lyme tests being unreliable, you have to question whether the tests are giving the right results.

I barely understand a word of this haha oh dear, so much to learn

Basically, ME/CFS is thought may be caused by infections with a number of different pathogens. And some ME/CFS patients can have chronic active infections with more than one of these ME/CFS pathogens.

That's why ME/CFS specialist doctors will usually test you for the full range of pathogens.

 

[Learner1]

What's the Freddd Methylation protocol?

The Freddd methylation protocol was developed by a PR member named Freddd who has some interesting genetics. People around here tend to use it as a "one size fits all" protocol, which is not the best idea.

Methylation is a process that happens in our cells, and is essential for proper immune system function, DNA replication, neurotransmitter production, detoxification, cell membrane health, etc.

It involves folate, B12, B2, B6, trimethylglycine, magnesium, potassium, methionine, and other nutrients, and produces glutathione, an important antioxidant used in immune function and detoxification.

Depending upon the mix of genetic SNPs you were born with affecting methylation, your environmental exposures, which place demands on it, as well as competition by other body biochemical processes for the various nutrients, your needs for these nutrients will be unique to you, and its highly likely not what Freddd found worked for him. (His protocol would make me quite sick.)

Having an imbalanced or inadequate methylation process can produce a plethora of unpleasant symptoms and promote disease, even cancer. It's very wise to have comprehensive nutrient testing to guide dosing of nutrients, like a Genova Diagnostics NutrEval test.

As you implement it, its wise to ensure the toxins you begin to mobilize are eliminated easily through your intestines. Drinking water, eating fiber, and using binders are strategies that help, as well as attending to your microbiome. Having adequate B1 and molybdenum and having adequate protein (amino acid) intake are essential, too.

Your needs will likely change over time, so adjusting your protocol every few months is wise.

There are a lot of resources on this site and across the internet for learning more.

 

[healinglyme]

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.

I don’t recommend this, because these tests are not reliable. Unfortunately there is NO test that is completely reliable, so a negative test doesn’t rule out Lyme disease. I tested negative with these tests at te beginning, so i didn’t get the treatment I needed. So thanks to the unreliable tests, I became completely bedridden in a dark room for many years. While getting treated with IV antibiotics the test came back positive.

I would recommend finding a LLMD (Lyme literate medical doctor) to find out if you have Lyme disease.

 

[Hip]

I tested negative with these tests at te beginning, so i didn’t get the treatment I needed. So thanks to the unreliable tests, I became completely bedridden in a dark room for many years.

Were you tested for active infections with the enteroviruses (CVB and echovirus) and herpesviruses (EBV, HHV-6 and CMV) linked to ME/CFS, to see whether or not these are part of your illness picture?

 

[healinglyme]

Yes. Tested positive for CMV, but Lyme treatment made the difference for me. Now I’m finished with my Lyme treatment and only treating immune dysfunction and gut imbalance.

 

[duncan]

I don’t recommend this, because these tests are not reliable. Unfortunately there is NO test that is completely reliable, so a negative test doesn’t rule out Lyme disease. I tested negative with these tests at te beginning, so i didn’t get the treatment I needed

We agree here, ie the C6 can miss alot, as can the WB. Regardless, these are still my tests of choice. The C6, if it picks up your strain, is a good benchmark - but, yes, it needs to pick up the strain. If it does, you can follow your disease.

I also recommend the WB because all you need is to get a read on the bands, and you can judge for yourself, the CDC Dearborn algorithm be damned.

 

[healinglyme]

We agree here, ie the C6 can miss alot, as can the WB. Regardless, these are still my tests of choice. The C6, if it picks up your strain, is a good benchmark - but, yes, it needs to pick up the strain. If it does, you can follow your disease.

I also recommend the WB because all you need is to get a read on the bands, and you can judge for yourself, the CDC Dearborn algorithm be damned.

The PCR is also quite a good test; but there are many false-negatives. In The Netherlands they are developing a better test to confirm if you have Lyme disease. I hope next year the test will be on the market. At this day Lyme is still a clinical diagnosis. Further research needs to be done. Why are some people really ill and other people don’t have symptoms at all? Why are some people getting better with 4 weeks of treatment and other patients need years of treatment to feel better or don’t feel better at all? I think the immune system plays a big role.

 

[duncan]

The PCR is also quite a good test; but there are many false-negatives. In The Netherlands they are developing a better test to confirm if you have Lyme disease. I hope next year the test will be on the market. At this day Lyme is still a clinical diagnosis. Further research needs to be done. Why are some people really ill and other people don’t have symptoms at all?

PCR misses a lot due to the fleeting presence of Lyme in blood. But even if you nail a PCR positive, you have hard core ISDN-types who will contest it by saying its just sign of non-replicable remnants. There are hurdles at every turn, and they are contrived hurdles. This is why Lyme needs to be scrutinized more - these are man-made impediments to truth.

As to why some people are sick with Bb and others not, who can say for sure? Maybe it has to do with immune responses and some people's immune system don't perceive Bb as a threat?

 

[arboretum]

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.

You're right, I didn't mention mention Late Stage Lyme Disease. Sorry. That still needs, though, the existence of an acute lyme disease that wasn't treated properly, and it isn't treated with long term antibiotics (short term, yes, long term, no). There needs to be a great deal of care not to misdiagnose things as late stage lyme when they aren't, not to go down a path which will lead nowhere, as many people are doing, and not to use treatments that lack sufficient evidence and may be harmful.

 

[duncan]

You're right, I didn't mention mention Late Stage Lyme Disease. Sorry. That still needs, though, the existence of an acute lyme disease that wasn't treated properly, and it isn't treated with long term antibiotics (short term, yes, long term, no). There needs to be a great deal of care not to misdiagnose things as late stage lyme when they aren't, not to go down a path which will lead nowhere, as many people are doing, and not to use treatments that lack sufficient evidence and may be harmfu

By the same token, a disease that claims a 20% treatment failure rate needs to be taken seriously. Treatment protocols that are curative for 80% of Lyme sufferers aren't worth much to the 20% who the protocol fails..

And when you're looking at 330,000 cases annually in the US alone, that's 66,000 NEW chronically sick Lyme patients wandering the streets each and every year.

 

[JES]

By the same token, a disease that claims a 20% treatment failure rate needs to be taken seriously. Treatment protocols that are curative for 80% of Lyme sufferers aren't worth much to the 20% who the protocol fails..

Late Lyme disease can be cured in 80% of cases? That was news to me. 20% treatment failure is very low and much lower than any of the suggested treatments for CFS/ME have, for example Rituximab had significant effects only in one third in the phase 2 trial, which was at the time considered a promising result. The impression I have from following Lyme disease forums is that people are on antibiotic combinations for years and in most cases with no curative effects whatsoever.

 

[duncan]

Late Lyme disease can be cured in 80% of cases?

Not Late Lyme, just Lyme. I suspect if only Late Lyme cases were studied, the failure rate would rise. If I'm not mistaken, the majority of cases are being diagnosed in either Early Stage, or Early disseminated, when it is allegedly easier to treat.

 

[arboretum]

By the same token, a disease that claims a 20% treatment failure rate needs to be taken seriously. Treatment protocols that are curative for 80% of Lyme sufferers aren't worth much to the 20% who the protocol fails..

And when you're looking at 330,000 cases annually in the US alone, that's 66,000 NEW chronically sick Lyme patients wandering the streets each and every year.

That isn't true. Antibiotics are effective for Lyme disease in almost all cases, and about 20% go on to develop Post Treatment Lyme Disease Syndrome (which might be what you're thinking of). There isn't any evidence Lyme Bacteria are resistant to any of the antibiotics commonly used to treat it. People with PTLDS usually recover after a number of months, like many other kinds of post infectious fatigue, and a few don't recover for longer, like people with CFS.

The symptoms of what people call Chronic Lyme also do not match with Late Stage Lyme at all. Testing for Lyme disease also has a high false positive rate, so if you test a lot of people without seeing if they fit another diagnosis first, you're going to have a lot of false positives. If they've been treated with short term antibiotics and they haven't recovered, the chance they actually have Late Stage Lyme would be around 1%.

 

[CCC]

I'm from Melbourne, vic Thank you for the suggestion - I'll try to find some Buhner herbs, I like the more gentle, natural approaches. What's the Freddd Methylation protocol?

If you had a positive result for Lyme at the Geelong lab, there's almost no doubt about the infection being real. The Geelong lab has a terrible reputation for false negatives.

There are a few options for Buhner herbs - the best approach is to simply buy Buhner's book and start with one or two of the herbs and see if they do anything. For example, we saw an almost instant response to Japanese knotweed (reduced irritability within about half an hour from just a few grains of powdered herb) and sida acuta (herxed from just a drop). That had us convinced.

This facebook group has been really useful: https://www.facebook.com/groups/1441091676154216/, and it will help you source the herbs in Australia.

As for the Freddd methylation protocol ... Freddd has a quick and dirty diagnostic, which is to slip a sublingual B12 under your tongue and see what happens. A positive effect, even if small, means a B12 deficiency at the least - for example, my son's vision and colour perception noticeably sharpened within minutes. We haven't really aimed to treat methylation, but just to get the B12 systems working again (apologies here if the terms are scientific enough). For us, the real issue was probably more a B12 and B2 deficiency, quite possibly from untreated bacterial and parasitic infections.

Australian sources:
Most Lyme etc herbs - start with just a crumb or powder or a drop of liquid:

• Japanese Knotweed: Herbology (in Western Australia) - we buy the powder and chug 1/4 tspn down with OJ.
• Tinctures: Mullumbimby herbals (in NSW) (good for a weak sida spp, and great for many other herbs)

Freddd B12 etc - find a doctor if you're planning to do more than see if B12 helps.

• iherb all the way - we started with this one for B12: https://www.iherb.com/pr/Jarrow-Formulas-Methyl-B-12-Cherry-Flavor-5000-mcg-60-Lozenges/117, but have now moved to B12oils.com
  You should also have some potassium on hand. We use this: https://www.iherb.com/pr/Now-Foods-Potassium-Gluconate-Pure-Powder-1-lb-454-g/13939 (I think my family has potassium issues separately).

 

[duncan]

Antibiotics are effective for Lyme disease in almost all cases,

Well, 80% could be considered by some to be "almost all cases". I don't, and I think leaving 1 in 5 sick an appalling record.

There isn't any evidence Lyme Bacteria are resistant to any of the antibiotics commonly used to treat it.

There is lots of evidence that abx (e.g. doxy, rocephen) commonly used to treat Lyme do NOT clear them of persister cells. I would refer you to three distinct studies by Drs Kim Lewis, Monica Embers and Zhang - all of which I think were published within the last five years - so much more current than the old IDSA Guidelines.

The symptoms of what people call Chronic Lyme also do not match with Late Stage Lyme at all.

Wrong. If you knew Lyme history, you'd know by definition chronic Lyme was and is Late Stage Lyme. This...perspective of what constitutes Lyme chronicity changed via a deliberate campaign to alter the meaning of chronic Lyme, ie defang it, in an effort to mitigate the growing outrage and backlash - a campaign that is still ongoing.

Testing for Lyme disease also has a high false positive rate, so if you test a lot of people without seeing if they fit another diagnosis first, you're going to have a lot of false positives.

Nonsense. It is actually quite difficult to test positive without having been exposed to Lyme, particularly when looking at IgGs for Late Stage cases.

If they've been treated with short term antibiotics and they haven't recovered, the chance they actually have Late Stage Lyme would be around 1%.

Where are you getting 1%? The 80/20 rule is widely acknowledeged - even Johns Hopkins uses it. Now if you talked to an ILADS person, the failure rate would likely be estimated at being higher. But 80/20 is pretty much accepted.

I don't know where you are getting your Lyme info, but you may wish to reconsider.

 

[arboretum]

Well, 80% could be considered by some to be "almost all cases". I don't, and I think leaving 1 in 5 sick an appalling record.


There is lots of evidence that abx (e.g. doxy, rocephen) commonly used to treat Lyme do NOT clear them of persister cells. I would refer you to three distinct studies by Drs Kim Lewis, Monica Embers and Zhang - all of which I think were published within the last five years - so much more current than the old IDSA Guidelines.


Wrong. If you knew Lyme history, you'd know by definition chronic Lyme was and is Late Stage Lyme. This...perspective of what constitutes Lyme chronicity changed via a deliberate campaign to alter the meaning of chronic Lyme, ie defang it, in an effort to mitigate the growing outrage and backlash - a campaign that is still ongoing.


Nonsense. It is actually quite difficult to test positive without having been exposed to Lyme, particularly when looking at IgGs for Late Stage cases.


Where are you getting 1%? The 80/20 rule is widely acknowledeged - even Johns Hopkins uses it. Now if you talked to an ILADS person, the failure rate would likely be estimated at being higher. But 80/20 is pretty much accepted.

I don't know where you are getting your Lyme info, but you may wish to reconsider.

The 80-90% figure quoted by Johns Hopkins refers to the fact that sometimes oral antibiotics don't work and intravenous antibiotics are needed, and that 10-20% of people go on to develop Post Treatment Lyme Disease Syndrome. You're taking their statistic out of context.

Testing for Lyme disease has a very low false negative rate. It's extremely rare for someone to test negative for lyme and actually have it. On the other hand, it is totally accepted that it has a relatively high false positive rate. The CDC (https://www.cdc.gov/lyme/diagnosistesting/index.html) recommends testing of lyme disease only when the symptoms are typical of lyme as a result of this, and has said that testing for lyme disease has about a 10% false positive rate. (here's: https://www.sciencedirect.com/science/article/pii/S1198743X14608120 a study that shows the false positive rate, for example.)

You're also misinterpreting the research of those people. None, or almost none, of those researching that avenue of research would claim that that Lyme disease can be completely unresponsive to antibiotics - they're only investigating whether it can be very partially unresponsive in a way that perpetuates the symptoms of Post Lyme Treatment Disease Syndrome - which is very different to late stage lyme. That line of research is also in early stages and not well established at all.

Late Stage lyme symptoms include rashes, arthritis, severe joint swelling, facial palsy, heart palpitations and nerve pain. From what I've seen, not many of the people claiming to have chronic lyme have those symptoms. If they do have those symptoms and they don't respond significantly to antibiotics, it's very unlikely they have late stage lyme.

 

[duncan]

The 80-90% figure quoted by Johns Hopkins refers to the fact that sometimes oral antibiotics don't work and intravenous antibiotics are needed, and that 10-20% of people go on to develop Post Treatment Lyme Disease Syndrome. You're taking their statistic out of context.

You may want to spend some time digging into the history of TBDs, say in the late 70's and 80's. Patients would go in with the bulls eye rash, and the doctors could confirm they had lyme, and many patients would receive treatment, but 1 out of 5 of those patients remained ill even after treatment.They remained ill with what brought them to the clinic - swollen knees, facial palsies, cognitive issues, headaches and dizziness. Oh, one or two of the symptoms might resolve - like the EM, for instance, or a facial palsey - what one researcher qualified as Major manifestations.

But they didn't develop a NEW syndrome - these researchers with their in vitro protocols found that 20% stayed sick. Period. No new Acronym disease like PTLDS or PLDS. They had Lyme, and true to the stages of Borrelial infection, it had to be Late Stage Lyme.

Testing for Lyme disease has a very low false negative rate

This is simply not true...at the very best it is hotly contested. Clearly you are not familiar with Vickie Logan or Pam Weintraub.

It's extremely rare for someone to test negative for lyme and actually have it. On the other hand, it is totally accepted that it has a relatively high false positive rate. The CDC

This is false and misleading. Case studies abound of patients testing negative, only to take some abx to stir up the scheetes - and bingo, another negative converted to positive

None, or almost none, of those researching that avenue of research would claim that that Lyme disease can be completely unresponsive to antibiotics - they're only investigating whether it can be very partially unresponsive in a way that perpetuates the symptoms of Post Lyme Treatment Disease Syndrome - which is very different to late stage lyme. That line of research is also in early stages and not well established at all.

Sorry, this makes no sense at all.

Post Lyme Treatment Disease Syndrome - which is very different to late stage lyme. That line of research is also in early stages and not well established at all.

No, PTLDS is NOT different from Lyme, at least not usually. Youve been misinformed, I fear. BUT, it IS true that not a lot of research has gone into PTLDS: Wanna Guess why? You may find the answer close to where the answer to this question is: Why is there so little research being conducted into Late Stage Lyme?

Ask your self why the great majority of diagnostics being researched fall into Early Lyme. Why would the government eschew a diagnostic platform that would help them qualify Late Stage Lyme once and for all? I mean, how perfect would that be? The NIH and CDC could say for sure that there can be no Late Stage Lyme because its diagnostics prove beyond a shadow of a doubt it is eradicated with CDC-treatment protocols. They could prove their treatment protocol worked and they were right all along. So...why isn't the govt pulling out all the stops to build this diagnostic?

Could the reason be is this country's rife with the victims of Late Stage Lyme, and if anyone ever developed an accurate metric that could definitively demonstrate who has Late Stage Lyme....a lot of people might be out of a job, and some may be going to jail?