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Naviaux Study Info Imbeded In Collaborator's Blog Post

msf

Senior Member
Messages
3,650
The only exclusionary testing available is Lyme testing, which is notoriously unreliable. This seems to be the whole point of the study, if you can´t distinguish Lyme from ME by using Lyme tests, can you distinguish them by using metabolomics? The problem then is whether they can make sure there aren´t any Lyme cases in the ME group, as this will affect the results. I guess if 100% of Lyme patients who test positive on the two-tier test have a particular biomarker, and most people with ME don´t, then that either suggests that they are different diseases or that seronegative Lyme is a different beast to seropositive Lyme (the first being a more likely hypothesis, obviously). They might then be able to go back over the results and exclude those ME cases that look a bit Lymey based on their metabolic profile, and see what effect that has on the sensitivity and specificity of the biomarkers.
 

out2lunch

Senior Member
Messages
204
The only exclusionary testing available is Lyme testing, which is notoriously unreliable. This seems to be the whole point of the study, if you can´t distinguish Lyme from ME by using Lyme tests, can you distinguish them by using metabolomics? The problem then is whether they can make sure there aren´t any Lyme cases in the ME group, as this will affect the results. I guess if 100% of Lyme patients who test positive on the two-tier test have a particular biomarker, and most people with ME don´t, then that either suggests that they are different diseases or that seronegative Lyme is a different beast to seropositive Lyme (the first being a more likely hypothesis, obviously). They might then be able to go back over the results and exclude those ME cases that look a bit Lymey based on their metabolic profile, and see what effect that has on the sensitivity and specificity of the biomarkers.
I think you might have touched upon the reason for the small sample size of the original study (43 subjects): differentiating between ME/CFS patients and Lyme patients. The GMA patient base is largely comprised of Lyme and rickettsial patients, which is to be expected since they're located in Sonoma County. Finding ME/CFS patients without active or chronic/post Lyme disease must have been very challenging.

I volunteered to be a part of the study, years ago, but was turned down. I never found out the reason, but this explanation makes sense: I was diagnosed as highly positive for Lyme in 1999 (IGeneX IgM) and treated with a combination of therapies for about a year. Since 2001, every single borrelia test from various labs has been negative, as well as other rickettsial disease tests. And the obvious active Lyme symptoms I had in the nineties disappeared completely after the first five or six months of therapy. But my ME/CFS/FMS continues onward, with obvious mitochondrial issues that have slowly worsened over time.

Do I still have Lyme disease? It's possible, though I'm not even equivocal on tests like iSpot for cytokines or IGeneX tests for antibodies, as if I never had the disease. Even pre-test provocation with antibiotics won't tease anything out. Perhaps I'm one of the lucky few who completely rid myself of the borrelia. And if that's the case, I would definitely fall into the post-Lyme patient category. I should inquire again about being included in that post-Lyme treatment group.
 
From a post on the Open Medicine Foundation's Facebook page https://www.facebook.com/OpenMedicineFoundation/

Now that the Severely Ill-BIG DATA Study is fully underway, we want to perform multiple investigations at the same time. Because of the many recent small and large donations, we can start another research project now without waiting.

An amazing new collaboration with Dr. Robert Naviaux and our very own Dr. Ronald Davis, director of our ME/CFS Scientific Advisory Board. As previously announced, Dr. Naviaux (of the University of California, San Diego School of Medicine) joined our Advisory Board and brings remarkable knowledge in metabolomics and mitochondria. In addition to Dr. Naviaux and Dr. Davis, the new study is being conducted in collaboration with Dr. Paul Cheney and Dr. Eric Gordon’s team. Dr. Davis will correlate the metabolic findings with genetic results. Be the first to know what they uncover! Sign up for the OMF Newsletter here http://bit.ly/1QKnjKm
 

Groggy Doggy

Guest
Messages
1,130

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Yep, read it; a bit hard to follow though. Nothing new or earth shattering. Mostly agree with it. Am more curious about how he plans to apply his knowledge to get treatments for us. What is his strategy and timeline for treatments?

Nothing new or earth shattering? I beg to differ! (Where have you seen this before?) I think it is absolutely earth shattering. Despite having a albeit brief background (got ill so had to stop studying) in biochem, I didn't even realise mitochondria had this CDR mechanism. I dont think many others did either but maybe I am wrong. Naviaux's paper blew my mind, especially in terms of potential.

The therapy referenced in the paper was suramin (antipurigenic). It was only on mice, but had impressive results. A clinical trial with suramin and autism was run recently with some updates here:

https://www.gordonmedicalresearch.com/wp-content/uploads/2016/03/Suramin-Newletter-April-2016-v8.pdf

Again with 'very promising' results (on humans). Until the paper is out we do not know the details.

The latest findings implicate CDR in M.E/CFS, which is absolutely mega, to use slang!

We are all desperate for a treatment, and that is exactly what Dr Naviaux is looking at, after analysing the metabolomics.

I suggest we keep our eyes out for the paper very shortly. I think it will make jaws drop.


B
 
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Groggy Doggy

Guest
Messages
1,130
.

The latest findings implicate CDR in M.E/CFS, which is absolutely mega, to use slang!

We are all desperate for a treatment, and that is exactly what Dr Naviaux is looking at, after analysing the metabolomics.

I suggest we keep our eyes out for the paper very shortly. I think it will make jaws drop.


B

I am looking forward to the jaw dropping paper.
 

Groggy Doggy

Guest
Messages
1,130
Hi @Ben Howell

i did not read all of the posts, in this thread. Was this quote from the Naviaux paper already discussed?

"Psychological trauma, particularly during childhood, can also activate the cell danger response, produce chronic inflammation,
and increase the risk of many disorders"

Do you have any thoughts either way about this quote?

Thanks!

GD :dog:
 

Kati

Patient in training
Messages
5,497
Hi @Ben Howell

i did not read all of the posts, in this thread. Was this quote from the Naviaux paper already discussed?

"Psychological trauma, particularly during childhood, can also activate the cell danger response, produce chronic inflammation,
and increase the risk of many disorders"

Do you have any thoughts either way about this quote?

Thanks!

GD :dog:
Yeah I have a problem with that...
 

Justin30

Senior Member
Messages
1,065
CDR is still good for ME.....I dont care where the disease comes from.....

Treatment, Funding, Research, Centers, Training, etc.

With a big figure out the problem and get us approved Medicine!

Stop killing us and ruining our lives.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hi @Ben Howell

i did not read all of the posts, in this thread. Was this quote from the Naviaux paper already discussed?

"Psychological trauma, particularly during childhood, can also activate the cell danger response, produce chronic inflammation,
and increase the risk of many disorders"

Do you have any thoughts either way about this quote?

Thanks!

GD :dog:

Yeah I have a problem with that...

Hey guys. I understand the concern, as it evokes a certain connection to previous unsavoury/plain wrong assumptions....

However I can't disagree with it as it relates to CDR. CDR is a concept from ideas dating back 60 years (In Naviauxs paper).

Stress/trauma does have effect on cells, and Naviaux believes it can activate the CDR.

The take-away idea is that a multitude of stressors can activate CDR-viruses, toxins, trauma (Ron Davis's previous trauma study noted the mitochondria had shut down in burn patients, but started back up again unlike his findings in M.E/CFS), psychological trauma, bacteria etc.

This may help explain the heterogeneity of M.E/CFS and how we can arrive at the same end result, despite different triggers.

It is not meant that our illness is psychological, no chance. Just that psychological trauma can invoke a CDR response. As can viruses, bacteria etc. I don't have an issue with that.

I think the paper out soon will really help regarding the uncertanties.


B
 
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perrier

Senior Member
Messages
1,254
Hey guys. I understand the concern, as it evokes a certain connection to previous unsavoury/plain wrong assumptions....

However I can't disagree with it as it relates to CDR. CDR is a concept from ideas dating back 60 years (In Naviauxs paper).

Stress/trauma does have effect on cells, and Naviaux believes it can activate the CDR.

The take-away idea is that a multitude of stressors can activate CDR-viruses, toxins, trauma (Ron Davis's previous trauma study noted the mitochondria had shut down in burn patients, but started back up again unlike his findings in M.E/CFS), psychological trauma, bacteria etc.

This may help explain the heterogeneity of M.E/CFS and how we can arrive at the same end result, despite different triggers.

It is not meant that our illness is psychological, no chance. Just that psychological trauma can invoke a CDR response. As can viruses, bacteria etc. I don't have an issue with that.

I think the paper out soon will really help regarding the uncertanties.


B
On the impact of childhood trauma on adult health, see the study called ACE. Adverse childhood experience.
There's lots on the Internet about this, and it was a study of many years duration. Trauma in childhood often affects health, resulting in chronic illness, they concluded.

So, I don't have an issue either with the idea that CD-R can be invoked by extreme stressors. The illness is not psychological, however. Far from it!
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
The concept of CDR is extremely interesting. It seems elegant in its ability to explain how so many different triggers can result in the same illness.

However, suramin to me is very scary - from Wikipedia on suramin:

The most frequent adverse reactions are nausea and vomiting. About 90% of patients will get an urticarial rash that disappears in a few days without needing to stop treatment. There is a greater than 50% chance of adrenal cortical damage, but only a smaller proportion will require lifelong corticosteroid replacement. It is common for patients to get a tingling or crawling sensation of the skin with suramin. Suramin will cause clouding of the urine which is harmless: patients should be warned of this to avoid them becoming alarmed.

Kidney damage and exfoliative dermatitis occur less commonly.

Suramin has been applied clinically to HIV/AIDS patients resulting in a significant number of fatal occurrences and as a result the application of this molecule was abandoned for this condition.[6]

It will be interesting to see the results of the human autism study --
 
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Justin30

Senior Member
Messages
1,065
The concept of CDR is extremely interesting. It seems elegant in its ability to explain how so many different triggers can result in the same illness.

However, suramin to me is very scary - from Wikipedia on suramin:



It will be interesting to see the results of the human autism study --

I remember readying that to "SCARY"

that said the disease and other drugs used to treat it are scary too.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
The concept of CDR is extremely interesting. It seems elegant in its ability to explain how so many different triggers can result in the same illness.

However, suramin to me is very scary - from Wikipedia on suramin:



It will be interesting to see the results of the human autism study --

I remember readying that to "SCARY"

that said the disease and other drugs used to treat it are scary too.

Its a serious drug for sure. But IF it is used and IF it worked for M.E/CFS, we may not need dosages as high as those in the AIDS study (0.5,1,1.5g weekly). We may need much less, and the incidents in the AIDS study seemed to occur more often at dosages above 1.0 and 1.5g weekly.

All theoretical at the moment. There may be new, safer antipurigenics on the horizon too.


B
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Nothing new or earth shattering? I beg to differ! (Where have you seen this before?) I think it is absolutely earth shattering. Despite having a albeit brief background (got ill so had to stop studying) in biochem, I didn't even realise mitochondria had this CDR mechanism. I dont think many others did either but maybe I am wrong. Naviaux's paper blew my mind, especially in terms of potential.

The therapy referenced in the paper was suramin (antipurigenic). It was only on mice, but had impressive results. A clinical trial with suramin and autism was run recently with some updates here:

https://www.gordonmedicalresearch.com/wp-content/uploads/2016/03/Suramin-Newletter-April-2016-v8.pdf

Again with 'very promising' results (on humans). Until the paper is out we do not know the details.

The latest findings implicate CDR in M.E/CFS, which is absolutely mega, to use slang!

We are all desperate for a treatment, and that is exactly what Dr Naviaux is looking at, after analysing the metabolomics.

I suggest we keep our eyes out for the paper very shortly. I think it will make jaws drop.


B
I agree, and thanks for the slang update, @Ben Howell!
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
There may be new, safer antipurigenics on the horizon too.

This is what I'm hoping for!

I wonder why so many drugs are so toxic, like Rituximab and suramin, and cancer drugs in general. I know researchers are finally starting to look at supporting the immune system to treat cancer, instead of waging all-out warfare in the body against cancer and healthy cells alike. Is it the mindset of researchers? instead of believing that the body has an innate ability to heal itself if properly supported, it seems very little regard is given to how the body actually works and instead attacks are launched against pathogens or abnormalities and serious toxicity can result. I'm afraid I may not be explaining myself very well here - but at least I know what I mean :)
 
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