• 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 (FM), 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.

Lecture by Dr Montoya from Feb. 2018, partly on antiviral treatment

Hip

Senior Member
Messages
17,824
HHV-6 foundation states over 1:320 IGG is suggestive. I have 1:1280.

That's only valid if the HHV-6 Foundation are referring to the exact lab test you took. If it is a different test or from a different lab, then you cannot necessarily translate titers from one test to another test.

I am in the same situation as you, regarding a recent CMV test I did at a London lab. My titers were 206.8 AU/ml, and the lab says < 6.0 AU/mL is negative. So my titers are 206.8 / 6.0 = 34 times higher than the negative value, which seems pretty high, but I cannot be sure that this is considered an active infection.

I'd like to use Dr Dantini's rule of thumb, which is that active infection = titers at least 4 times than the average titers for the general population. So I wrote to the lab, asking them for data on average titers for my test, but they did not reply.
 
Last edited:

Hip

Senior Member
Messages
17,824
Hip, I am starting to wonder if those of us with positive antibodies to Borrelia get ME because somehow these latent viruses also 'wake up'? Has anyone looked at that possibility?

Lots of Dr Lerner's patients would have active infections with both herpesviruses as well as Borrelia, Babesia, etc. He would then treat both the viral and other microbial infections at the same time.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
Lots of Dr Lerner's patients would have active infections with both herpesviruses as well as Borrelia, Babesia, etc. He would then treat both the viral and other microbial infections at the same time.

I did antibiotics against streptococci because I had elevated streptolysin O. The titer was around 300 three times over a year. Above 200 is elevated per my and Dr Lerners Lab, although Dr Lerner recommends treatment if the titre is >400, so I was technically not in the group he would treat.

I definitely noticed some benefits of this treatment, which of course could have several reasons. It may be there was a bacterial infection, though too low to diagnose rheumatic fever (I also don't really have the symptoms). It may also be a change in microbiome, Ampicillin/sulbactam is broad spectrum and is likely to alter it significantly. Or it may be immunomodulation, Ampicillin is known to stimulate leucocytes. Or a placebo effect, but I think that's highly unlikely.

I now want to test if those bacteria (if they were actually there) are the reason why my 9 months of high-dose Valacyclovir didn't produce very good results. I clearly improved in the first few months on Valacyclovir, but it plateaued soon and then it got worse because of kidney issues.

Maybe bacteria - even if the titer is only mildly elevated - do something that causes antiviral treatment to be less effective or ineffective. Or maybe they are part of the reason for the Kidney problems.

I also want to try adding Hydroxychloroquine as an antiinflammatory drug. Maybe inflammation plays a role.

I am putting Rituximab on the backburner for now, because I think there is a substantive risk involved because it can weaken your immune system and when infection is the cause of your illness, that probably isn't good.
 

Hip

Senior Member
Messages
17,824
I now want to test if those bacteria (if they were actually there) are the reason why my 9 months of high-dose Valacyclovir didn't produce very good results. I clearly improved in the first few months on Valacyclovir, but it plateaued soon and then it got worse because of kidney issues.

Have you been tested for coxsackievirus B and echovirus using a sensitive antibody neutralization test such as the ARUP Lab tests? Because chronic enterovirus as well as chronic herpesvirus are associated with ME/CFS, and if you have an active enterovirus infection, then treating your herpesvirus infections alone may not be as effective as treating both enterovirus + herpesvirus.

The usual co-infections tested for in ME/CFS are Borrelia, Bartonella, Babesia, Brucella, Mycoplasma; and
Dr Lerner would also test for Anaplasma and Ehrlichia.
 

pattismith

Senior Member
Messages
3,931
Have you been tested for coxsackievirus B and echovirus using a sensitive antibody neutralization test such as the ARUP Lab tests? Because chronic enterovirus as well as chronic herpesvirus are associated with ME/CFS, and if you have an active enterovirus infection, then treating your herpesvirus infections alone may not be as effective as treating both enterovirus + herpesvirus.

The usual co-infections tested for in ME/CFS are Borrelia, Bartonella, Babesia, Brucella, Mycoplasma; and
Dr Lerner would also test for Anaplasma and Ehrlichia.
and Chlamydia/Chlamydophila?

Chlamydia species have shown to work synergically when they co-infect cells with HHV:

http://forums.phoenixrising.me/inde...osis-other-brain-disorders.52830/#post-875130

http://forums.phoenixrising.me/inde...during-non-productive-hhv-co-infection.19969/

Some CFS/ME specialists (sorry i don't remember the name), think we have to adress intracellular bacterial infections first before fighting virus.
Personnally I have so much difficulties to tolerate antibiotics, I wonder how I could tolerate anti-viral therapy given at the same time. Maybe I'm wrong?
 

Hip

Senior Member
Messages
17,824
No one in Germany does or even knows this test.

This antibody neutralization test is not available in the UK either, which means unless you send your blood samples to the US, you cannot know whether you have chronic enterovirus infection. You can also send samples to the US for Dr Chia's stomach biopsy test, which is cheaper.
 

Hip

Senior Member
Messages
17,824
Chlamydia/Chlamydophila?

Chlamydia pneumoniae is considered a pathogen that can cause ME/CFS, rather than just a co-infection that can worsen ME/CFS. Dr Chia regualry tests for Chlamydia pneumoniae.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
This antibody neutralization test is not available in the UK either, which means unless you send your blood samples to the US, you cannot know whether you have chronic enterovirus infection. You can also send samples to the US for Dr Chia's stomach biopsy test, which is cheaper.

Are results reliable if the sample goes to the US via air mail? Do the antibodies/viral DNA degrade over the time and doesn't it need cooling etc.?
 

Hip

Senior Member
Messages
17,824
Are results reliable if the sample goes to the US via air mail? Do the antibodies/viral DNA degrade over the time and doesn't it need cooling etc.?

Usually the lab will provide transport instructions. In the coxsackievirus B and echovirus antibody neutralization tests at ARUP (which cost around $440 each — pretty expensive) they say: "Stability: Ambient: 48 hours; Refrigerated: 2 weeks; Frozen: 1 year".

So if you were to send you blood serum sample to ARUP Lab by 48 hour courier (serum is the amber colored fluid from the blood), then it should be OK.


There is also a lab in Greece that does antibody neutralization testing for coxsackievirus B (but not echovirus) at a much cheaper price of €68, which is the Hellenic Pasteur Institute. I only recently discovered this; this is the only antibody neutralization test I am aware of in Europe.

However, the problem is that Dr Chia validated the ARUP Lab tests against ME/CFS patients and healthy controls, and though this validation determined that titers of 1:320 and higher in the ARUP Lab tests indicate active infection in ME/CFS. But the same validation has not been performed at the Hellenic Pasteur Institute, so interpreting you results may be more difficult.