• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

H

Helen

Senior Member
Messages
2,243
Interesting idea @msf but can we be sure that there always are Borrelia bacterias in blood in late stage borrelia?
 
paolo

paolo

Senior Member
Messages
198
Location
Italy
msf said:
My idea (I´m sure someone has had it before), is that blood from patients could be transfused into mice, and the mice could then be sacrificed to see if they had become infected by Lyme, Yersinia, etc.
Click to expand...

The problem with this approach is that rarely borrelia is found in blood. This is why blood PCR for borrelia has such a low sensitivity.

A somehow similar idea is xenodiagnosis, a procedure in which you use uninfected ticks. You let them feed on a human, and then search for borrelia in their guts.

I've heard of this method in a lecture held by Brian Fallon (Columbia University).
 
Last edited:
M

msf

Senior Member
Messages
3,650
Yes, Helen mentioned the same thing, which is why I mentioned a tissue transplant.

I hadn´t thought of ticks, stupid me.

Thanks for teaching me the proper word for what I was proposing, xenodiagnosis.
 
D

duncan

Senior Member
Messages
2,240
Adriana Marques has been working with xenodiagnosis using uninfected ticks at the NIH in Bethesda, MD. She has had mixed results - which is better than I had expected, considering the IDSA crowd with which she has historically sided.
 
M

msf

Senior Member
Messages
3,650
According to Wikipedia, this was how babesia was first identified (in hamsters and gerbils).
 
D

duncan

Senior Member
Messages
2,240
On one level - for me - the idea is counter-intuitive since Bb retreats from blood into tissue and organs, so why would any blood transferring mechanism work? If it DID actually work, I would have expected it to be a low yield/percentage play.

But if I remember correctly, the idea is there may be some component in tick saliva or midgut that actually attracts Borrelia from its sanctuaries in the human host.

I'm pretty sure they are still actively engaged in that clinical trial at the NIH, because they did get one or two positive hits I think.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
NK17 said:
@Jonathan Edwards do you know if Prof. Mella and Dr. Fluge have ever tested their ME patients and/or study participants for Borrelia and co-infections?

It would be really interesting to know in light of all these exchanges here on PR and anecdotals reports of Lyme, Bartonella, Babesia "overlapping" with ME.

I would really love if any of you real scientists and doctors participating at the next Invest in ME conference would look into this and even more if you could report to us.

What is your personal opinion on this specific subject, if you have any?
Click to expand...

When I looked up PubMed for borrelia and CFS I found one paper - which said that serological evidence for borrelia infection in CFS patients was the same as in healthy controls. If this is the only paper on evidence for borrelia infection in CFS then I suspect the 'real scientists' at IiME are simply not going to be interested. Considering the amount of noise around Lyme and ME I think we have to assume that some other researchers have looked in to this. And if they have found even a glimmer of evidence for borrelia infection being associated with ME then why is it not published? It would be an evenings work to write a letter to a journal. It would be no more than a couple of week's work for a research assistant to pull out ME patient data and get some control data from the same testing lab and write it up.

Sorry but the silence, in terms of lack of evidence for any association between borrelia and ME, seems to be particularly deafening! OK you might want fancier tests to fine tune the analysis but if there is no correlation between borrelia serology and ME then it seems pretty unlikely that there is any biological relevance. If there is just a tad of correlation, where is it written down?

I often get educated on PR by people knowing about more stuff than I do - that's why I am here in a sense - but on this one I am tempted to think that it really isn't there.
 
D

duncan

Senior Member
Messages
2,240
Curious.

What do you imagine happens to all those symptomatic folk who test Bb IgM positive after two or three months? Or all those that fluctuate between Bb IgG positive and negative, e.g. fluctuate back and forth between less than five bands positive, or five or more positive? Or what happens to all those who remain IgG positive post-treatment? Or those infected with a species or strain that flies beneath the B31 radar?

What about all those who are sporting B miyamotoi, and have been for years, but with no adequate testing to confirm?

I can list additional possible points of confusion (the list of possible co-infections is long), but will stop with these, as these are fairly representative.

Many of these cases will present as ME/CFS, and be diagnosed - properly, at least historically - accordingly. The symptom clusters are strikingly similar in far too many instances. Many clinicians would be likely to make such a call.

And arguably, given the sad status of current Borrelia and other TBD diagnostics, many will not get a proper diagnosis, and will be diagnosed as ME/CFS. But each of those who does will have at least "a tad of correlation" with Borrelia - just no proper distinction being made. At the very least, a correlation can be made with Bb as the trigger mechanism that led to ME/CFS, if in fact Bb has been eradicated.

ETA: Why we would assume anything with either ME or Lyme when it comes to research??
 
Last edited:
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
duncan said:
Curious.
ETA: Why we would assume anything with either ME or Lyme when it comes to research??
Click to expand...

I am not assuming anything. I am simply pointing to the fact that nobody has published anything that relates borrelia to ME, as far as I can see. All sorts of ups and downs of serology occur in all sorts of situations but if they occur at the same rate in normal folk then there is no reason to think they mean much. They may just reflect how hot it was that day in the lab (I say this from years of experience).

The world is full of coincidences that we interpret as meaning something but science is about ironing those out and finding what is repeatable.
 
D

duncan

Senior Member
Messages
2,240
Sorry, Dr. Edwards, but when discussing any possible link between Lyme and ME and all the noise associated with both, you opined "...I think we have to assume that some other researchers have looked in to this..."

I cannot say what has been published. But it's common practice in the US at least to take someone who had been diagnosed and treated for Lyme, and who remained symptomatic, but eventually turned sero-negative (or not), and re-brand that individual with ME/CFS.

The thing is, perhaps that old case of Lyme HAS morphed into ME/CFS. Right? Like EBV or an enterovirus, Bb triggered ME/CFS. There is no reason to believe this would be any less a valid occurrence.

Perhaps Lyme lingers but diagnostics fail. The patient tests negative via the CDC's 2T system. It happens. So, Borrelia, in stealth mode, sickens the patient, while clinicians diagnose that individual with ME/CFS, because until SEID has been accepted, it is still primarily a diagnosis of exclusion. Or, maybe, in an ultimate twist, an individual meets the requirements for BOTH diseases - I know at least a few of the members of this forum are a part of that fraternity.

However you approach these possibilities, Borrelia assumes more than just a tad of a correlation, and coincidence does not factor in at all.
 
P

PDXhausted

Senior Member
Messages
258
Location
NW US
This is slightly off topic, but this letter was published in a journal last week, but there's no abstract or summary, and I've been really curious what is in the content of the letter. It appears this group doing work with antineural antibodies and Lyme has some comment about ME/CFS. Does anyone have access to it?

Brain, Behavior, and Immunity
Available online 10 April 2015, doi:10.1016/j.bbi.2015.04.006

In Press, Corrected Proof — Note to users

Letter to the Editor
Anti-neural antibody response in patients with post-treatment Lyme disease symptoms versus those with myalgic encephalomyelitis/chronic fatigue syndrome


http://www.sciencedirect.com/science/article/pii/S0889159115000914?via=ihub
 
You must log in or register to reply here.