Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

[AndyPR]

the link you posted does not work. ?

As the error message given is

Oops, Something Went Wrong
The page you requested cannot be retrieved at this time due to an internal error. Our developers have been sent a notification of this error and should have it resolved shortly.

it looks like it is a problem with the website itself rather than the link. I've tried a couple of other pages and get the same error so we probably just have to wait until they fix it.

 

[TrixieStix]

Everyone has persistent infections, unless they are very young, live in a bubble, or are super lucky. So if you have enough such infections, at critical locations, its possible, though not proven, that they can keep sending signals that reinforce a dauer state. We are still a long way from finding all the answers, but at the start of this road it looks that we can finally see our destination in the distance.

For example, let me point out that an infection of the brain or nervous system, even latent infections, might alter neurological signals. They might also alter immune and eicosanoid signals. We just don't know enough. What is clear is that large numbers of patients do not have acute infections. Acute. This does not apply to absolutely everyone though. I know two patients who have recurring infections of things which are not supposed to recur.

this made me think of this statement from Dr. Naviaux...

"Chronic PCR surveillance studies in healthy humans are showing that little waves of viral replication happen periodically throughout our lives. We have been, and are regularly infected by hundreds of viruses over a lifetime.
Sometimes this is obvious and causes a symptom like blisters or an ulcer around the mouth. However, most of the time these waves of viral replication are silent and produce no symptoms at all because they are handled in the
background by the innate and cell-mediated immune system. Even the deadly poliovirus infected 150 to 1800 people, producing only mild or unnoticed infections, for every one person who developed paralytic disease.

In most of the cases of ME/CFS that I have seen where IgG antibody titers have been measured before, during, and after antiviral therapy, the antibody titers remain high after treatment, even though the patient may report symptomatic improvement. I believe the symptomatic improvement after antiviral treatment may have more to do with the metabolic effects of antivirals in ME/CFS than their action on viral replication. The good news is that this hypothesis can be studied scientifically and put to the test easily using the tools of PCR and metabolomics.

Good science needs to remain open, ask the questions without bias, design good experiments, take careful measurements, then have the courage to follow the data wherever they may lead."

-Dr. Naviaux http://naviauxlab.ucsd.edu/wp-content/uploads/2016/09/Metabolomics-QA-for-CFS-v12.pdf

 

[Mij]

My neurologist tested my serum copper and ceruloplasmin levels a few months ago and I am deficient in both...below normal range. Being low in copper is rare in the developed world and I eat plenty of high copper foods and do not consume too much zinc. We ruled out Wilson's disease, but I'm really puzzled why I have low ceruloplasmin and low copper.

same with me. it could simply be because of malabsorption.

 

[TrixieStix]

same with me. it could simply be because of malabsorption.

interesting... have you seen others on here talk about being deficient in both? I do know that high iron (hemochromatosis) can also cause it and I was tested but no go. It's a short list of things that cause ceruloplasmin and copper deficiency. If malabsorption what would the mechanism or cause be for that?

 

[Mij]

@TrishaMafia

I will PM you so not to take the thread off topic

 

[Rooney]

My neurologist tested my serum copper and ceruloplasmin levels a few months ago and I am deficient in both...below normal range. Being low in copper is rare in the developed world and I eat plenty of high copper foods and do not consume too much zinc. We ruled out Wilson's disease, but I'm really puzzled why I have low ceruloplasmin and low copper.

Did your neurologist use a certain panel testing a group of things where these two stood out? Also, what lab was used?

I wish I had more info about lab work we can do now addressing some aspects of this new area of study! You may PM me too of off-topic.

Many thanks

 

[Sushi]

If you want to continue the copper discussion please go to this thread.

 

[valentinelynx]

As the error message given is

it looks like it is a problem with the website itself rather than the link. I've tried a couple of other pages and get the same error so we probably just have to wait until they fix it.

Working for me now, FWIW.

 

[Anne]

@Ben Howell

About the "sick but never sick" subgroup: The ME patient community seems to be divided into two groups: those who since onset of ME are more susceptible to infections, and those who since onset contract fewer infections, even close to none ("sick but never sick").

I belong to the susceptibility group (more infections, very easily contracted), and this is a rather large group. Does the Naviaux-Davis team take this group into consideration, too?

 

[RogerBlack]

The ME patient community seems to be divided into two groups: those who since onset of ME are more susceptible to infections, and those who since onset contract fewer infections, even close to none ("sick but never sick").

I have not been sick in the past several years. Then again, not actually going out of the house and living alone helps quite a lot with that I suspect.

 

[Neunistiva]

I belong to the susceptibility group (more infections, very easily contracted)

Do you get infections, or do you get ME/CFS flare-up from virus or bacteria attacking your body?

Do you get new symptoms like high fever, lung infection, vomiting, etc. Does your blood count show an infection?

Or is it sore throats, mild fever, achiness, fatigue, being out of breath, having tachycardia etc?

 

[Anne]

Do you get infections, or do you get ME/CFS flare-up from virus or bacteria attacking your body?

Do you get new symptoms like high fever, lung infection, vomiting, etc. Does your blood count show an infection?

Or is it sore throats, mild fever, achiness, fatigue, being out of breath, having tachycardia etc?

I get infections from virus and bacteria. I contract whatever anyone has who comes close to me (and I'm house-bound, so I see very few people, but if there is a hint of a bug, I get it) - colds, flus, stomach viruses, etc. Very clear these are not ME flare-ups (I have those as well of course, but they are different). I also get skin infections with obvious bacterial causes.

And I know a lot of ME patients who are the same - the opposite of "sick but never sick".

The ME patient community seems to be divided into two groups: those who since onset of ME are more susceptible to infections (”sick with ME and on top of that often sick with bugs”), and those who since onset contract fewer infections, even close to none ("sick but never sick").

The increased susceptibility group (more infections, very easily contracted) is rather large in my experience (as an ME advocate in Sweden, I’m in touch with at lot of patients as well as researchers and clinicians). I don’t think anyone knows the percentages of the two groups, but my guess would be that the increased susceptibility group is the larger one, or at least as large as the “sick but never sick” group.

I know the Norwegian researchers studying rituximab and cyclophosphamide are very interested in this division and have added a question about susceptibility to infections to the DePaul Questionnaire which they are using to monitor ME symptoms.

It would be great if Jason and colleagues could include it in the DSQ.

 

[hixxy]

@Anne I think some people change from one group to the other over time. I was definitely in the susceptible group in early years (and to some degree my whole life even pre-ME). I swapped to the not-susceptible group 7 years ago when I became more severe. Have not had a cold or flu since.

 

[Sidereal]

@Anne, I used to literally catch every everything my whole life, then about 7 years ago I stopped getting infections altogether and developed all sorts of bizarre allergic reactions to everything as my energy metabolism further collapsed from an already suboptimal baseline. There was a clear immune shift. Given that the pattern can change within the same person I doubt that these are meaningful subsets of ME.

 

[trishrhymes]

There is the complicating factor that for those of us who are housebound there may be little or no social contact and little chance of being exposed to infection. I think that applies to me - my helpers and visitors know not to come if they think they have an infection.

 

[Sidereal]

In my case I share the house with several people. It's like grand central station here + visitors coming and going daily. Viral and bacterial infections frequently rip through the house and I'm the only one who never gets anything.

 

[TiredSam]

In my case I share the house with several people. It's like grand central station here + visitors coming and going daily. Viral and bacterial infections frequently rip through the house and I'm the only one who never gets anything.

I spend plenty of time with people coughing and sneezing in classrooms and my family catch stuff too at times. I haven't caught anything for nearly 2 years.

 

[leela]

Yes, I believe there is a point at which the body makes the TH1-->TH2 shift to protect itself. I gather that point comes at a different stage for each unique organism.

 

[Gingergrrl]

I have not had a cold, flu, fever, etc, since getting ill and in Jan 2017, it will be four years. I am exposed anytime my daughter or husband get sick but have never even once caught anything from them. In early 2015, my system shifted to crazy allergic/MCAS reactions that nearly killed me but since starting IVIG, I now tolerate foods and smells again.

So my immune system appears to be back in the middle although I have still not gotten sick. I agree with the two sub-groups theory (the constantly sick and the never sick) and that I am in the group who is not able to mount a fever or traditional illness. Everything for me at present appears to be skewed toward the autoimmune side.

 

[Gingergrrl]

I liked the idea of being able to compare the two samples/Metabolon tests.

I wanted to post an update to my own quote above. It turns out that my blood sample from May 2015 was salvageable so the Metabolon test was run! I do not have the actual results yet but will be setting up a phone call with the nutritionist at OMI to go over them. I have no idea what they will say but look forward to learning more. And then comparing the results if I should do the test in the future once offered by Laurel Crosby's group at Stanford.

ETA: This is not for any study and just for my own knowledge.