• 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.

Thoughts on Labs and where to go Next?

nyanko_the_sane

Because everyday is Caturday...
Messages
655
The problem is that there is no medical treatment to eliminate chronic viruses so while we can identify the culprits we don't have any treatments to eliminate them and we are stuck managing symptoms and coping with the disease. Why are no vaccinations for EBV, HHV6, etc despite the fact that we know they are harmful?
The thing is these viruses are not harmful to everyone, just to a few million of us unlucky ducks. Quack!

There is research into possible treatments, but I doubt we will have a treatment anytime soon. It is too late to help a lot of us, we are already damaged by these viruses.
 
Last edited:

Swim15

Senior Member
Messages
369
The thing these viruses are not harmful to everyone, just to a few million of us unlucky ducks. Quack!

There is research into possible treatments, but I doubt we will have a treatment anytime soon. It is kind of too late to help a lot of us, we have already taken damage.

Uh this is extremely incorrect. Latest viruses, even in people with healthy immune responses, are implicated with dozens of potential health conditions that don’t develop until years later and are also implicated in depression and other behavioral health problems.

There is not a single virus out there that doesn’t harm the human body in some way, shape, or form, even if it isn’t readily apparent.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
Uh this is extremely incorrect. Latest viruses, even in people with healthy immune responses, are implicated with dozens of potential health conditions that don’t develop until years later and are also implicated in depression and other behavioral health problems.

There is not a single virus out there that doesn’t harm the human body in some way, shape, or form, even if it isn’t readily apparent.

Chronic viruses that integrate into DNA are very harmful. EBV causes cancer. Varicella-Zoster causes shingles. HHV6 causes depression. Multiple viral infections cause ME.
 

nyanko_the_sane

Because everyday is Caturday...
Messages
655
Uh this is extremely incorrect. Latest viruses, even in people with healthy immune responses, are implicated with dozens of potential health conditions that don’t develop until years later and are also implicated in depression and other behavioral health problems.
Well at least that is what we are lead to believe, because herpes viruses are not on a high priority track to elimination. Yes, even breast cancer can be caused by EBV. Mental illnesses like schizophrenia and OCD can be traced to EBV as well. But we don't actually know what percentage of the population will ultimately be adversely affected now or later. The number of cases of virus caused diseases are just not reported, We do know that herpes viruses have been with us since before modern humans. Science articles indicate the earliest genus affecting birds originated between 100 to 200 million years ago.

An article of interest:
https://www.science.org.au/curious/people-medicine/epstein-barr-virus
 

Swim15

Senior Member
Messages
369
Well at least that is what we are lead to believe, because herpes viruses are not on a high priority track to elimination. Yes, even breast cancer can be caused by EBV. Mental illnesses like schizophrenia and OCD can be traced to EBV as well. But we don't actually know what percentage of the population will ultimately be adversely affected now or later. The number of cases of virus caused diseases are just not reported, We do know that herpes viruses have been with us since before modern humans. Science articles indicate the earliest genus affecting birds originated between 100 to 200 million years ago.

An article of interest:
https://www.science.org.au/curious/people-medicine/epstein-barr-virus

Yeah you’re right we will likely never know the exact numbers and downstream effects but that isn’t to say I would EVER call viruses benign for any human
 

Judee

Psalm 46:1-3
Messages
4,497
Location
Great Lakes
I know you said Lyme was negative but did any of the bands show positive???

If it turns out that you have an IgG or IgM deficiency, then all the test results above could be wrong.

I have IGM deficiency and have always wondered about this. @Pyrrhus, is there anyway around that with the testing, do you know?

There is not a single virus out there that doesn’t harm the human body in some way, shape, or form, even if it isn’t readily apparent.

I agree with this. EBV, for instance, can go into hiding in the B cells and cause cancer later on.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I have IGM deficiency and have always wondered about this. @Pyrrhus, is there anyway around that with the testing, do you know?

I also have selective IgM deficiency, probably since developing ME.

Unfortunately this means I can't fully trust any IgM test results. :(
 

sometexan84

Senior Member
Messages
1,235
  • Complement, Total (CH50)
  • Total immunoglobulins (talked to several patients with 'normal' viral titers that were in fact high and masked by overall low immunoglobulins)
  • IgG Subclass immunoglobulins
  • NK cell count - this is a little more specialized but favorited by some specialty practitioners like Dr Kilmas and Dr Ray at the NOVA neuro institute - who are also, unfortunately, not accepting new patients. Not sure if you have any pull there
  • Redraw of all EBV viral labs possible including EA IgG and DNA by PCR
  • Testing for Chlamydia Pneumoniae (IgG and IgM)
  • Mycoplasma pneumoniae IgG antibodies
  • Parvovirus B19 PCR
  • CD4:CD8 ratio
  • Hydrogen/Methane breath test
  • Any and all additional viral/bacterial tests my doc can think of
  • Varicella-zoster virus (VZV)?
  • Antistreptolysin O (ASO) test for Streptococcus infection - I know many would disagree w/ me on this, but I recommend testing
  • Sleep test, Apnea
  • Thyroid test for Hashimoto's and hypothyroidism
  • HHV8
  • IgM, IgA, and IgE immunoglobulins as well
  • COVID-19?
  • Coxiella burnetii (Q fever)
  • HIV
  • Hep C
  • H Pylori
If I were a betting man, I'd put my money on bacteria in the gut. Based on the posts of yours that I've seen.
 
Messages
246
Currently retesting for all of these some new/some old - anyone have any additions they can think of? Trying to check fucking everything before I go out to Stanford in a few months

  • Complement, Total (CH50)
  • Total immunoglobulins (talked to several patients with 'normal' viral titers that were in fact high and masked by overall low immunoglobulins)
  • IgG Subclass immunoglobulins
  • NK cell count - this is a little more specialized but favorited by some specialty practitioners like Dr Kilmas and Dr Ray at the NOVA neuro institute - who are also, unfortunately, not accepting new patients. Not sure if you have any pull there
  • Redraw of all EBV viral labs possible including EA IgG and DNA by PCR
  • Testing for Chlamydia Pneumoniae (IgG and IgM)
  • Mycoplasma pneumoniae IgG antibodies
  • Parvovirus B19 PCR
  • CD4:CD8 ratio
  • Hydrogen/Methane breath test
  • Any and all additional viral/bacterial tests my doc can think of

if your ok with it, what is going on at stanford in a few months?