32 of 40 chronically ill have spirochetes in their blood

[halcyon]

CONCLUSION: Spirochetes are very common in some group of patients, especially with diagnosis ME/CFS.

These are misdiagnosed patients then. The major CFS and ME criteria have always excluded borreliosis.

 

[Biarritz13]

These are misdiagnosed patients then. The major CFS and ME criteria have always excluded borreliosis.

But aren't the major CFS and ME biased since the Lyme diagnostic isn't reliable?

 

[JBB]

Nobel prize nominee Dr Lida Mattman has found spirochetes in MS, Fibro and ALS...why is it so difficult to believe that ME / CFS is not dissimilar. All the naysayers just seem to shout "there's no evidence, the tests are unreliable" while having read very little about Lyme disease. According to one LLMD 80% of his patients make it to near remission (unfortunately many relapse). He uses IGeneX testing. Shouldn't anyone with ME / CFS be wondering what's going on, researching Lyme, getting on Lyme forums to see for themselves? Anyway there will be a study within about a year on this exact subject (I can almost guarantee it) coming out of the UK and with excellent study design so we'll thankfully all be able to put it to rest soon. I think that alone says something important.

 

[halcyon]

But aren't the major CFS and ME biased since the Lyme diagnostic isn't reliable?

This group apparently had no trouble finding evidence of borreliosis.

 

[Antares in NYC]

This group apparently had no trouble finding evidence of borreliosis.

So is this method valid for finding evidence of borreliosis, or not? Are we to only use the official and notoriously flawed official tests? Apparently what appears in their video and photos means nothing, right? Honest question.

 

[Dufresne]

Nobel prize winner Dr Lida Mattman has found spirochetes in MS, Fibro and ALS...why is it so difficult to believe that ME / CFS is not dissimilar.

Actually she was a Nobel Prize nominee.

 

[barbc56]

So is this method valid for finding evidence of borreliosis, or not? Are we to only use the official and notoriously flawed official tests? Apparently what appears in their video and photos means nothing, right? Honest question.

If this study is replicated. But the study was carried out by a blogger who is biased. Unfortunately, biased as his wife is extremely ill so can understand the desperation. The study has not been published.

What I don't understand is the dismissal of the the usual tests and I think there is merit that these tests are limited and a clinical diagnosis needs to be added. But this "study" has a lot more questions that need to be answered but it doesn't appear the same level of scrutiny is applied here.

The theory may be correct but there isn't enough evidence to say either way.

Just an observation that I may be misinterpreting.

 

[halcyon]

So is this method valid for finding evidence of borreliosis, or not? Are we to only use the official and notoriously flawed official tests? Apparently what appears in their video and photos means nothing, right? Honest question.

I have the same question. How did this group find it so easily while others cannot?

My point is simply that if the causal agent can be found, then the diagnosis (and treatment) becomes more clear. If you find Borrelia spp. in the blood then the diagnosis is Lyme borreliosis, not ME/CFS. It would make no sense to throw these people into a nebulous ragbag diagnosis that is being treated with Valcyte, rintatolimod, or god forbid, rituximab. These people need antibiotics.

 

[Antares in NYC]

What I don't understand is the dismissal of the the usual tests and I think there is merit that these tests are limited and a clinical diagnosis needs to be added.

It's simple and you know the answer: because the standard tests for Lyme have been proven to miss up to 50% of true positives. It's a testing method that was initially designed for keeping statistics on the bizarre disease that was spreading in Lyme, CT in the late 70s, but was adopted for clinical diagnosis despite how faulty they are.

Let me reverse it: since the tests have been proven to be unreliable and wrecked countless people's lives because of late detection and delayed treatment, why keep relying on them? Why does it seem impossible to get past these unreliable tests? You have also decried any new methodologies that seem more sensitive (like IgeneX or LTT). Why so much reliance on a proven faulty test?

Mind you, I'm not defending the study that's the subject of this thread. I'm curious about it, and would like to see a follow up since it's not the first time I heard that many CFS patients in Europe are now testing positive for Borrelia. And there's something definitely squiggling around in that video!

I would certainly love other countries to take the lead on this research, away from the usual suspects, literally thinking outside the box, even if it involves blood cultures.

 

[Scarecrow]

Dr. Edwards, the video and photos of spirochetes in that blog look consistent with microscopy images of borrelia (not just borrelia burgdorferi, but with many other variations of that bug). While they have a corkscrew shape, they look like shakey squiggly worms under the microscope. Disgusting actually:

https://www.google.com/search?q=borrelia microscopy

Not sure how serious or strict this study is, but if their results are to be believed, they may be on to something. It's also not the first time I read similar reports from scandinavian countries. It may be the case that borrelia (in all its many variations) is more ubiquitous than we thought, especially since testing is quite unreliable.

Just my two cents.

Whatever is in video links 1 and 3 look sort of similar to the clip in the OP but I wouldn't with any confidence say that they are the same. None of them have a helical shape, unlike video clip 4.

 

[Antares in NYC]

I have the same question. How did this group find it so easily while others cannot?

My point is simply that if the causal agent can be found, then the diagnosis (and treatment) becomes more clear. If you find Borrelia spp. in the blood then the diagnosis is Lyme borreliosis, not ME/CFS. It would make no sense to throw these people into a nebulous ragbag diagnosis that is being treated with Valcyte, rintatolimod, or god forbid, rituximab. These people need antibiotics.

Can't argue with your thinking, but please keep in mind that many people are diagnosed with both. There is a lot of crossover. Also many people (one in four) never recover from borreliosis despite treatment. A Lyme diagnosis tends to be just as much a nebulous ragbag diagnosis as ME/CFS, in my personal experience.

 

[Antares in NYC]

Whatever is in video links 1 and 3 look sort of similar to the clip in the OP but I wouldn't with any confidence say that they are the same. None of them have a helical shape, unlike video clip 4.

I said "consistent", not that they are the same. Also, Borrelia Burgdorferi morphs into three different shapes, to make things even more complex.

I think you would agree the study deserves a closer follow up, right?

 

[barbc56]

et me reverse it: since the tests have been proven to be unreliable and wrecked countless people's lives because of late detection and delayed treatment, why keep relying on them? Why does it seem impossible to get past these unreliable tests? You have also decried any new methodologies that seem more sensitive (like IgeneX or LTT). Why so much reliance on a proven faulty test

I don't want to get this thread off topic so I'll clarify. It seems that the same level of scientific scrutiny is not applied equally. Saying something wiggles doesn't mean anything unless further studies are done.

It could pan out the blogger is correct, but we can't say either way as the science just isn't there.

I don't decry any new methodologies if they are backed by plausibility and scientific evidence. Hopefully, It has nothing to do with any biases for or against lyme. I just follow the research.

I will not get into this same old debate. It's on you if you choose to see me as biased. This thread is about one particular "study" and analyzing it. Not the merits or pros and cons of lyme disease in general.

I don't think any further replies are needed by me to questions not related to this thread.

Barb

 

[Pactallon]

Hi all. First post here.

I was one of the subjects in the Swedish study. it was a private study & not a proper scientific study (with everything that entails). But a study non the less. No financial interest involved. Just the will to get sick people get proper treatment and recognition.

Anyways here is a video i took during the study with my cell phone on the computer monitor attached to microscope (bad quality because im filming on the monitor directly). There were several spirochete like things this is one of them. First it goes to a thrombocyte and then onwards to a erythrocyte and is trying to bore into it?
See the video:

Got ME/CFS after mono 8 years ago. And no tick bite since i was a child that i know of!

 

[JBB]

Actually she was a Nobel Prize nominee.

Yes this is correct! Sorry must have been having a brain fog day, edited to correct it.

 

[JBB]

Could the blogger send his evidence (videos) to someone with a trained eye who would be able to judge if these are some kind of spirochete perhaps? @Pactallon This might give it more weight.

I don't think anyone is arguing this is empirical proof. I've suggested one person with ME do a Lyme test. They did. It was positive. They treated. They got massively better after being ill for decades. Anecdotally this goes on all the time. That doesn't "prove" they had Lyme but it proves that treating as if it were Lyme was beneficial for them.

I'd agree that Lyme can be a bit of a nebulous diagnosis though as there are often several underlying problems. Still better than the ever more mysterious CFS / ME though.

 

[itsmewithme]

I wasn’t sure if I should join this discussion or not, but I have alot to add, so I will:

First off all, why would you bash this, saying its pretending to be something it isn’t? Its well presented what it is and what it isn’t, just read for yourselves, no discussion needed. This is a good first step in exploring the area, hopefully it can lead to research in the field. If it wasn’t interesting, it wouldn’t have spread this fast. This doesn’t at all show any causation.

Second, theese are no speculations.

Third, this person is not controversial in Sweden. How can a person be controversial? If you say something lie this, probably you should explain exactly what you mean.

Fourth: Titti is a woman with real training in this field.

Fifth: The spirochete video wasn’t made for only one testsubject, everyone has their own video of their spirochetes.

Sixth: While the Swedish healthcare failed in giving me proper diagnosis, this study helped me get it. The Swedish health care system use unsensitive testing methods, which leaves people with wrong diagnosis and in agony for the rest of their lives. You wonder if this is borrelia in the videos, the study doesn’t look to answer that question at all. However, that was the analysis from the darkfieldmicroscopy I recieved, as well CONFIRMED by elispot borrelia test, at another lab. I can also tell you that four serious coinfections were found as well, which I, by the way, also had been tested for several times in the swedish health care system but they failed to recognize.

Seventh: No matter what this study can reveal, isn’t it interesting that all theese people walk around with spirochetes in their blood? And after years of testing of the blood, they never found out their blood was infected? As well, if this blodinfection would be treated, would they stay as sick as they/we do? As well, what are those spirochetes exactly?

 

[roller]

... isn’t it interesting that all theese people walk around with spirochetes in their blood? And after years of testing of the blood, they never found out their blood was infected? As well, if this blodinfection would be treated, would they stay as sick as they/we do? As well, what are those spirochetes exactly?

this all doesnt seem to bother too many people..

we are deploying robots to the mars and control them from earth...
in switzerland they actually replicate the creation of the universe...

...while these people cant find the parasites wiggling in your blood and body...

this is a fail of unprecedented order. this is criminal.

 

[JBB]

I wasn’t sure if I should join this discussion or not, but I have alot to add, so I will:

First off all, why would you bash this, saying its pretending to be something it isn’t? Its well presented what it is and what it isn’t, just read for yourselves, no discussion needed. This is a good first step in exploring the area, hopefully it can lead to research in the field. If it wasn’t interesting, it wouldn’t have spread this fast. This doesn’t at all show any causation.

Second, theese are no speculations.

Third, this person is not controversial in Sweden. How can a person be controversial? If you say something lie this, probably you should explain exactly what you mean.

Fourth: Titti is a woman with real training in this field.

Fifth: The spirochete video wasn’t made for only one testsubject, everyone has their own video of their spirochetes.

Sixth: While the Swedish healthcare failed in giving me proper diagnosis, this study helped me get it. The Swedish health care system use unsensitive testing methods, which leaves people with wrong diagnosis and in agony for the rest of their lives. You wonder if this is borrelia in the videos, the study doesn’t look to answer that question at all. However, that was the analysis from the darkfieldmicroscopy I recieved, as well CONFIRMED by elispot borrelia test, at another lab. I can also tell you that four serious coinfections were found as well, which I, by the way, also had been tested for several times in the swedish health care system but they failed to recognize.

Seventh: No matter what this study can reveal, isn’t it interesting that all theese people walk around with spirochetes in their blood? And after years of testing of the blood, they never found out their blood was infected? As well, if this blodinfection would be treated, would they stay as sick as they/we do? As well, what are those spirochetes exactly?

Well said and thank you for the extra info.

 

[Antares in NYC]

Hi all. First post here.
I was one of the subjects in the Swedish study. it was a private study & not a proper scientific study (with everything that entails). But a study non the less. No financial interest involved. Just the will to get sick people get proper treatment and recognition.

I wasn’t sure if I should join this discussion or not, but I have alot to add, so I will:
First off all, why would you bash this, saying its pretending to be something it isn’t? Its well presented what it is and what it isn’t, just read for yourselves, no discussion needed. This is a good first step in exploring the area, hopefully it can lead to research in the field. If it wasn’t interesting, it wouldn’t have spread this fast. This doesn’t at all show any causation.

Hi @Pactallon and @itsmewithme:
Thanks so much for your contribution and welcome to PhoenixRising. I appreciate the extra information, and the personal angle to this story. While this study requires much needed follow up, I find it very interesting that so many subjects seemed to have spirochete-like organisms living in their blood. It definitely calls for further inquiry.