• 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.

Antiviral/-bacterial strategy

Messages
13
Hi guys!
Just want to share my thoughts about my lab results and the strategy based on it.
Maybe will find somebody with the same problems.

My main symptom is physical fatigue (affecting walking etc).

Arminlab test
CMV IgG antibodies (ELISA)2,823 Ratio
Ratio >= 1,1 = positive - more than 2566 times higher
CMV EliSpot lytic
34 SI
> 3 = positive
CMV EliSpot Latent208 SI
> 3 = positive
VZV IgG antibodies (ELISA)1753,3 IE/l
>110 IE/l positive - more than 15.9 times higher
HHV6 IgG-antibodies (IFT)1:100
reference < 1:10
HSV-1/2 IgG-Ak (Elisa)406,72 U/ml
positive >30 U/ml - more than 13.5 times higher
EBV VCA p18 IgG
positive
EBV VCA p23 IgG
positive
EBV EBNA-1 IgG
positive
EBV EliSpot (lytic)
6 SI
> 3 = positive

Coxsackie-IgG Type A7 (IFT)
1:1000
reference < 1:100
Coxsackie-IgG Type B1 (IFT)1:1000
reference < 1:100

Coxsackie-IgA Type A7 (IFT)
1:10
reference < 1:10
Coxsackie-IgA Type B1 (IFT)1:10
reference < 1:10
Mycopl.pneum. IgG-AB (ELISA)2,716 Ratio
Ratio >= 1,1 = positive) - more than 2469 times higher
Mycoplasma pneum. EliSpot5 SI
> 3 = positive

So according to this test my main targets should be CMV and Mycoplasma pneum.
Interesting that I have no usual symptoms of Mycoplasma pneum. at all.

For CMV I started valngancyclovir (valcyte) with protocol from this paper
900mg 2x day for 3 weeks, after 900mg onece a day.
Monitoring CBC, liver/kidney markers every week.

I know about Prevymis (letermovir) but it's very expensive and hard to get.

For Mycoplasma I'm thinking about Doxy 100mg 2x day, but not sure yet.
 

Hip

Senior Member
Messages
17,910
I've never seen anyone with cytomegalovirus IgG antibodies which are 2566 times higher than the lab reference value for negative. That's extraordinarily high.

ME/CFS patients who have chronically high IgG antibody levels might be 16 or 32 times the lab reference, maybe even slightly higher, I've never seen 2566 times.

This makes me wonder about the Arminlab tests. You might want to contact the lab, and ask why these antibody levels are so high.


Note also that the Arminlab test for Coxsackie virus is deceptive : the main Coxsackie viruses found in ME/CFS patients are coxsackievirus B3 and B4, then to a lesser extent B2 and B5, and sometimes B1.

But Arminlabs only test for coxsackievirus B1, but not any of the other Bs (see this page, under Virology > Ligand Assays).

So that means you have not been properly tested for the full range of coxsackievirus B. There are six Bs, B1 to B6.

Enterovirus ME/CFS expert Dr John Chia says you can only reliably test for chronic coxsackievirus B using an antibody test that employs the neutralisation method.


To test for HHV-6, the HHV-6 Foundation say you need an antibody test which utilises the IFA method. I believe ArminLabs use IFA for HHV-6 (see this page, under Virology > Ligand Assays). So that appears to be the right test.


To test for EBV, Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are high antibody levels in the VCA IgM and/or EA IgG diffuse tests. Ref: 1 2

This study confirms that EBV reactivation is identified by high VCA IgM or high EA IgG diffuse antibodies.

So a test for EBV IgG EA (early antigen) is required to properly test for reactivation.


You can read more about the tests ME/CFS doctors use in this ME/CFS roadmap document.
 

Hip

Senior Member
Messages
17,910
For CMV I started valngancyclovir (valcyte) with protocol from this paper
900mg 2x day for 3 weeks, after 900mg onece a day.
Monitoring CBC, liver/kidney markers every week.

Valcyte is the drug normally used when ME/CFS doctors want to target cytomegalovirus infection. But note that according to Dr Lerner's published studies, it normally take 3 or 4 month's treatment to even begin to see any improvements in symptoms, and around a year for the full benefits to manifest.

So you may not notice much with just 3 weeks treatment.


Natural killer (NK) cells are considered important in the control of cytomegalovirus infection, so some of the NK function boosters listed in this post such as Siberian ginseng might be helpful.

Siberian ginseng is one of the most potent NK boosters.

If you have anxiety or depression, cytomegalovirus may be involved.
 
Messages
13
Valcyte is the drug normally used when ME/CFS doctors want to target cytomegalovirus infection. But note that according to Dr Lerner's published studies, it normally take 3 or 4 month's treatment to even begin to see any improvements in symptoms, and around a year for the full benefits to manifest.

So you may not notice much with just 3 weeks treatment.


Natural killer (NK) cells are considered important in the control of cytomegalovirus infection, so some of the NK function boosters listed in this post such as Siberian ginseng might be helpful.

Siberian ginseng is one of the most potent NK boosters.

If you have anxiety or depression, cytomegalovirus may be involved.
900mg twice a day for three weeks and then 900mg per day for 6 months.
So three weeks only for a double dose of it.

No mental issues as anxiety or depression, only physical fatigue.

PS About NK cells - I also did a test for immune system (a part of Armin's Lyme testing)

NK cells CD56+ CD3- (%) 20,27 % 5,40 - 30,90 [ ....*... ]
NK cells CD56+ CD3- (absolute) 391 /ul 77 - 427 [ . .....* ]
CD57+ NK-cells (%) 42,28 % 2,00 - 77,00 [ ....*... ]
CD57+ NK-cells (absolute) 165 /ul 100 - 360 [ ..*..... ]
The result of the CD57-cell count indicates no chronic immune-suppression.
 
Last edited:

ruben

Senior Member
Messages
302
Can someone please tell me the best place for me to buy Valcyte. I am in UK
 

Blazer95

..and we built castles in the Sky.
Messages
239
Location
Germany
I have Always thought These elispots and LTTs Just Show that there has been an infection and Not that its active No?

I Had multiple positive LTTs but valaciclovir Had 0 effect.
 
Messages
13
I have Always thought These elispots and LTTs Just Show that there has been an infection and Not that its active No?

I Had multiple positive LTTs but valaciclovir Had 0 effect.
arminlabs elispot has lytic and latent parts
as I understand lytic is what is active now
 
Messages
13
I've never seen anyone with cytomegalovirus IgG antibodies which are 2566 times higher than the lab reference value for negative. That's extraordinarily high.
thank you, I will definitely ask Arminlabs about it.
This lab seems controversial bit I did not find better option in EU (im from Cyprus)

My Mycopl.pneum IgG is also crazy high - 2469 times more
 

Hip

Senior Member
Messages
17,910
I did not find better option in EU (im from Cyprus)

There is Rudas Lab in Cyprus.

They have a cytomegalovirus test, though it does not say whether this is IgM or IgG. Dr Lerner says you need an IgG test to detect the chronic infections in ME/CFS.

They also have a coxsackievirus B IgG test via IFA.

IFA is often more sensitive that ELISA. But it is not as sensitive as neutralisation, which is the antibody detection method recommended by Dr Chia. So I am not sure if this IFA test will be sensitive enough to detect the chronic coxsackievirus B infections found in ME/CFS.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Hi guys!
Just want to share my thoughts about my lab results and the strategy based on it.
Maybe will find somebody with the same problems.

My main symptom is physical fatigue (affecting walking etc).

Arminlab test
CMV IgG antibodies (ELISA)2,823 Ratio
Ratio >= 1,1 = positive - more than 2566 times higher
CMV EliSpot lytic
34 SI
> 3 = positive
CMV EliSpot Latent208 SI
> 3 = positive
VZV IgG antibodies (ELISA)1753,3 IE/l
>110 IE/l positive - more than 15.9 times higher
HHV6 IgG-antibodies (IFT)1:100
reference < 1:10
HSV-1/2 IgG-Ak (Elisa)406,72 U/ml
positive >30 U/ml - more than 13.5 times higher
EBV VCA p18 IgG
positive
EBV VCA p23 IgG
positive
EBV EBNA-1 IgG
positive
EBV EliSpot (lytic)
6 SI
> 3 = positive

Coxsackie-IgG Type A7 (IFT)
1:1000
reference < 1:100
Coxsackie-IgG Type B1 (IFT)1:1000
reference < 1:100

Coxsackie-IgA Type A7 (IFT)
1:10
reference < 1:10
Coxsackie-IgA Type B1 (IFT)1:10
reference < 1:10
Mycopl.pneum. IgG-AB (ELISA)2,716 Ratio
Ratio >= 1,1 = positive) - more than 2469 times higher
Mycoplasma pneum. EliSpot5 SI
> 3 = positive

So according to this test my main targets should be CMV and Mycoplasma pneum.
Interesting that I have no usual symptoms of Mycoplasma pneum. at all.

For CMV I started valngancyclovir (valcyte) with protocol from this paper
900mg 2x day for 3 weeks, after 900mg onece a day.
Monitoring CBC, liver/kidney markers every week.

I know about Prevymis (letermovir) but it's very expensive and hard to get.

For Mycoplasma I'm thinking about Doxy 100mg 2x day, but not sure yet.
On a full blood test, did they indicate any infections as well eg high or low neutrophils and same with lymphocytes??

I've used valcyte and it's a tough drug to tolerate but did get easier over time.
If you check some of the old valcyte forums, there was a trend for people to start with a low dose like 450mg once a day and slowly ramp it up as they could tolerate. Many did well on 1 tablet twice a day.

Also if other herpes viruses are involved, it was common for valcyte to not be as active against them compared to valtrex or famvir. So many ended up taking valtrex/famvir plus valcyte which then started lowering their viral load shown by their titres.

I have a preference for famvir as I think it has a broader range of effects and can hit cmv, not as strong as valcyte for cmv but it's a good addition, especially if having problems tolerating higher doses of valcyte.

Doxycycline is a good choice for mycoplasma as is azithromycin.
 
Messages
13
On a full blood test, did they indicate any infections as well eg high or low neutrophils and same with lymphocytes??
yep, they did.
Screenshot 2024-04-02 at 9.24.42 AM.png
Screenshot 2024-04-02 at 9.26.44 AM.png
Screenshot 2024-04-02 at 9.28.45 AM.png

So many ended up taking valtrex/famvir plus valcyte which then started lowering their viral load shown by their titres.
it seems a good hypothesis. I can tolerate valcyte 2 x 900mg per day and adding valtrex could help.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
yep, they did.
View attachment 53669View attachment 53670View attachment 53671

it seems a good hypothesis. I can tolerate valcyte 2 x 900mg per day and adding valtrex could help.

The elevated lymphocytes help confirm that your viral titres are an active infection.
With valtrex, it was also common for people to stay on valtrex after they finished their 6month plus course of valcyte. It's worth considering as valtrex as been used to prevent cmv infection in organ transplants.

Good luck 👍
 
Messages
13
The elevated lymphocytes help confirm that your viral titres are an active infection.
I revised history of my lymphocytes labs and noticed that they decreased a bit at time then I tried valcyte/valtrex/TAF for around a month and a half.
Screenshot 2024-04-02 at 1.18.34 PM.png
 

Blazer95

..and we built castles in the Sky.
Messages
239
Location
Germany
Hopping into this topic quickly: Lymphocytes high indicate infections, would Low Lymphocytes indicate immune exhaustion?

Asking for a friend...

@threadstarter: I have read somewhere that high Lymphocytes indicate a th1-dominance. Maybe you can (symptomatically) Profit from th1/th2 balancing?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
I revised history of my lymphocytes labs and noticed that they decreased a bit at time then I tried valcyte/valtrex/TAF for around a month and a half.
View attachment 53681

That's a good sign. I've had similar experience that correlated with improvements.
I did a lymphocyte subset test which measures all the t cells like cd8, cd4 etc. I found my total lymphocytes came done quickly, say a month or 2 but the T cells took awhile, they took years to consistently be within the normal range.
A few times when I stopped antivirals, I found these t cells would shoot up. For me there was a good correlation with improvements and the use of antivirals/famvir.
It's common to see cd8 t cells elevated during an active ebv/cmv infection.
 
Messages
40
i read a report from a person being infected with mycoplasma pneumoniae. he took doxycyclin and azithromycin for 36 months combined in the daily maximum dosage so im not sure doxycyclin alone will do the job here.