• 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.

Loss of IgG antibodies

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Do you still show a pcr positive to ebv now?
No, I do not. I did 20 months of Valcyte from 2027 to 2019 and it has been negative since about 12 months in - my doctor waited for me to have 4 negative PCR tests before taking me off it. It did not reactivate last year when HHV6 did after I'd had oral surgery and 2 COVID shots in a 6 week period, so I'm wondering if the Rituximab I had wiped it out
often wonder that those of us who have lost our igg antibodies to ebv that this means potentially we still have the infection going on
EBV doesn't typically clear. It hides out in B cells and waits to reactivate when defenses are down
as we dont have protective antibodies but also low nk function. Could the low nk function be a type of immune exhaustion from continually fighting ebv without the help of antibodies🤔 .
I think that is correct. EBV also uses up resources through the immune system's efforts to fight it, depleting the body of nutrients like vitamin C and zinc, which lower immune function.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Tha


Thanks but remind me was this specifically for herpes zoster?

No that was just immunoglobulin subclasses.

Specific to VZV igg just said positive and had good immunity to varicella, no titre numbers given here in this country. And then i stopped antivirals and within a week had a big shingles outbreak. My cfs dr said they probably saw high igg levels and said i had good immunity but in reality varicella was active/reactivating . No igm detected to vzv.

I was taking antivirals for vzv, ebv, cmv(was my cfs onset infections, varicella being chickenpox) for several yrs at that stage and wanted to stop antivirals, so before stopping i wanted to check my immunity to vzv to avoid shingles. That worked out well🤣. That was 2015. Before shingles and as far back as i can remember with cfsme, i had the typical generalized brain fog but use to have a weird sensations of increased fog on the left side of my head. I now think maybe that was related to vzv/shingles before it came out??

I have considered the varicella vax but its quite expensive here in our free healthcare system🤣 until your 70yo then its free. But my thinking on it is that i have plenty of vzv antibodies and its my shitty nk function that allows vzv and other viruses to reactivate.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Possibly, or it could be dysautonomia, as the parasympathetic branch of the autonomic nervous system activates NK cells and the sympathetic branch deactivates NK cells.
Are you referring to the TRPM3 ion channels on nk function in cfsme by NCNED?
This group seem to be making inroads into research of mecfs🤞
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
No that was just immunoglobulin subclasses.

Specific to VZV igg just said positive and had good immunity to varicella, no titre numbers given here in this country. And then i stopped antivirals and within a week had a big shingles outbreak. My cfs dr said they probably saw high igg levels and said i had good immunity but in reality varicella was active/reactivating . No igm detected to vzv.

I was taking antivirals for vzv, ebv, cmv(was my cfs onset infections, varicella being chickenpox) for several yrs at that stage and wanted to stop antivirals, so before stopping i wanted to check my immunity to vzv to avoid shingles. That worked out well🤣. That was 2015. Before shingles and as far back as i can remember with cfsme, i had the typical generalized brain fog but use to have a weird sensations of increased fog on the left side of my head. I now think maybe that was related to vzv/shingles before it came out??

I have considered the varicella vax but its quite expensive here in our free healthcare system🤣 until your 70yo then its free. But my thinking on it is that i have plenty of vzv antibodies and its my shitty nk function that allows vzv and other viruses to reactivate.
What antivirals were you on?

If you're in Europe, Lab4More may have better testing.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Are you referring to the TRPM3 ion channels on nk function in cfsme by NCNED?
This group seem to be making inroads into research of mecfs🤞


No, I actually wasn't referring to any interaction between TRPM3 ion channels and NK cells.

I was referring to the cortisol (glucocorticoid) and β2 adrenergic (epinephrine) NK cell receptors. These receptors are activated by the sympathetic branch of the autonomic nervous system:
1644061117050.png



Note that it is because of these receptors that the autonomic nervous system can de-activate NK cells!
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
No, I actually haven't heard about that interaction between TRPM3 ion channels and NK cells.

I was referring to the cortisol (glucocorticoid) and β2 adrenergic (epinephrine) NK cell receptors. These receptors are activated by the sympathetic branch of the autonomic nervous system:
View attachment 46811


Note that it is because of these receptors that the autonomic nervous system can de-activate NK cells!

https://pubmed.ncbi.nlm.nih.gov/30134818/
This group have done several similar studies.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Do you still show a pcr positive to ebv now?
I have recently, then HHV6 activated, too, and EBV went drlirmant, on Valcyte and Famvir.
I often wonder that those of us who have lost our igg antibodies to ebv that this means potentially we still have the infection going on as we dont have protective antibodies but also low nk function. Could the low nk function be a type of immune exhaustion from continually fighting ebv without the help of antibodies🤔
Yes Yes.
I think my chronic neutropenia is possibly also due to immune exhaustion.
Could be. Well worth discussing with a clever immunologist.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Could be. Well worth discussing with a clever immunologist.
Finding a clever immunologist here is harder than treating cfs. My one and only visit with a supposedly top immunologist, I spent a certain amount of time explaining to him that his nk numbers test is not the issue , it is that the nk cells don't bloody work. I just got a stupid look back trying to explain numbers and function are different 🤔.
 
Messages
21
When I was 13 or 14, I was sidelined for almost the entire summer due to what felt like really bad dizziness or light-headedness (my head was heavy on one side, with some fatigue), no other symptoms that I could recall. Didn't have cold sores when I was growing up, did have chicken pox. Could that have been EBV or CMV Mono?

Fast forward to 07/2021, after being sick for around one year (got sick around 06/2020), my PCP finally told me to get tested for covid antibody to see if I have Long Covid and the covid ab test result says: SARS-CoV-2 Semi-Quant Total Ab was <0.4 (negative) but the SARS-CoV-2 Antibody, IgG was Positive.

My PCP also tested me for CMV and EBV reactivation also back in 07/2021. My CMV IgM was negative. IgG was positive, 2.10 ref range 0 - 0.59 (please see attached photos). I have also lost my EBV VCA IgG ab (IgM and IgG were negative) but my EBNA IgG is over 600. Dr didn't order EBV Early Antigen so I asked for PCR quant and it was negative. PCP said "past infection". I wonder if EBNA over 600 possibly means there is active infection going on?

Currently, my main symptoms since 06/2020 are tingling in right foot mainly the first two toes, bulging veins (in right leg and palm of my hands and seeing blue veins all over), persistent low grade fevers, constant debilitating fatigue and dizziness (head heavy on one side, issues with my balance) which have gotten worse since 10/2021 and I'm bedridden at the moment. I also have GI issues like persistent loose stool and loud gut noises during and post meals and I also have two lymph nodes in the right groin that are slightly enlarged (not raised, hard to find, around 1cm). No shingles, no cold sores, no sore throat. Is it possible to have reactivated herpes viruses without those specific symptoms? Or do you guys think this is Long Covid?
 

Attachments

  • Screenshot_20230526_222751.jpg
    Screenshot_20230526_222751.jpg
    269.8 KB · Views: 3
  • Screenshot_20230526_222734.jpg
    Screenshot_20230526_222734.jpg
    247.1 KB · Views: 3
  • Screenshot_20230527_022831.jpg
    Screenshot_20230527_022831.jpg
    133.3 KB · Views: 2
Messages
21
I also have lost my igg antibodies to ebv. Apparently its quite common amongst cfs/me and i first read about it in oslers web when cheney and peterson had patients who stopped producing igg antibodies. So much for igg be antibodies forever??

Im unsure what it means, its possible that these dam viruses are running around doing what they like and the immune system is allowing it??

cheers!!
Did you lose EBV VCA IgG and EBNA as well? How about EBV early antigen?
 
Messages
21
I honestly can't recall, but it was suppose to basically say you had a past infection and those antibodies are supposedly with you for life, what igg antibodies I initially had.
Oh ok, I lost EBV VCA IgG antibodies. Ebna is really high (over 600) so I think I have reactivated EBV. Is your EBV early antigen positive on your latest lab?

I'm currently bedridden atm and unable to get tested for reactivated EBV/CMV/hhv6, etc. May I ask what are the signs and symptoms of reactivated EBV, CMV or hhv6? I'm going to have try to buy generic valtrex or Famvir. I don't think I can buy generic valcyte.

Do you know if Famvir have antiviral activity against CMV/HHV-6? Thanks
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Oh ok, I lost EBV VCA IgG antibodies. Ebna is really high (over 600) so I think I have reactivated EBV. Is your EBV early antigen positive on your latest lab?

I'm currently bedridden atm and unable to get tested for reactivated EBV/CMV/hhv6, etc. May I ask what are the signs and symptoms of reactivated EBV, CMV or hhv6? I'm going to have try to buy generic valtrex or Famvir. I don't think I can buy generic valcyte.

Do you know if Famvir have antiviral activity against CMV/HHV-6? Thanks

I'm in Australia and testing here we don't get a titre level given, it's either positive or negative.
The reactivation symptoms for cmv are typical viral symptoms of lethargy headaches, sore glands and general aches and pains.
My blood work before antivirals and about 7 years after cfs onset, showed total lymphocytes elevated and all my t cell lymphocytes elevated eg cd3, cd4, cd8 etc. The pathology results said lymphocytosis, appears to be a viral infection.
This was done by a new Dr at the time who was familiar with cfs and antivirals. We did the lymphocyte testing again 3 months later in case the first test was just a cold flu type virus. The results were the same and this was when I started antivirals/famvir. It took 3 months before I started to notice things shifting. Blood work showed my total lymphocytes had come down to normal range but my lymphocyte t sub sets were all still elevated. It took 12 months for them to come down where most were within normal range except cd8 T cells which was barely above normal and is commonly seen in ebv and cmv infections.
After this 12 month period I changed to valtrex as it was alot cheaper drug at the time. But over the next 3 month my symptoms returned and my blood worked showed another viral reactivation, ebv or cmv or both as the lymphocyte subset test is non specific. My total lymphocytes and lymphocyte sub sets were all elevated and pathology report said the same thing, lymphocytosis and appears to have a viral infection.
So I started back on famvir and improvement in symptoms and blood work repeated as before.
In Australia they don't use igg titre levels or give out titre levels. All they say is a positive igg test just means you've had the infection before. Although I somehow managed to get a cmv titre level test once, which they may do for hiv pts and I must have slipped through the cracks as they refused to do the test again. I can't recall my cmv titre level, only that it was high enough going by Dr Lerners opinion to be classed as reactivated cmv plus at the time I had been on antivirals for a few months when I got this test. Otherwise the only testing available to us to indicate any sort of reactivation is a lymphocyte subset test and it's very non specific to what infection, but for famvir to lower these lymphocyte markers, it's a strong indicator it's probably cmv and maybe ebv.
Also I was involved in a cfs study testing nk function over an 18month period while I was on antivirals. My nk function was very low during this time period I was in the study.
Also 75% of the time I get blood work done, my neutrophils are classed as moderately low.
Also, going off Dr Lerners work valtrex will work for ebv but if you have cmv or hhv6 then it probably won't and that's been my personal experience. Anecdotally some drs have found famvir to work on cmv and hhv6 and is far less toxic and that's my personal experience as well. Dr Lerner used quite high doses which I never approached. My first few years I used famvir at 250mg twice a day and then moved to 500mg twice a day, which I'm currently on.
Antivirals really are a trial and error treatment and it takes time to see results. Atleast 3 months minimum to notice anything and 6-12 months for obvious improvements in general. I wouldn't say they are a cure but they can play a big role in one's improvement. If a person doesn't notice anything after 3 months I'd consider dropping it and look into something else, although sometimes stopping a treatment is needed to tell how much it's helping and if it's worth pursuing.
Good luck👍🤞🙏
 
Messages
21
My total lymphocytes and lymphocyte sub sets were all elevated and pathology report said the same thing, lymphocytosis and
Thanks so much. I'm a Covid Long Hauler of nearly three years. My CBC often came back with low platelets (5 out of 8 times), low monocytes, low eos or low neutrophils and one time I had low lymphocytes as well. Can reactivated Herpes viruses cause that (weaken the immune system/cause low lymphocytes) or do you think this is persistent sars cov 2?

I have some acyclovir 400mg lying around have been taking them and it helps with the persistent low grade fever that I have been dealing with since i got sick back in June 2020 but it comes back when I stop taking acyclovir. I'm trying to see if I should buy valtrex or famciclovir. Don't have a doctor atm :(
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Thanks so much. I'm a Covid Long Hauler of nearly three years. My CBC often came back with low platelets (5 out of 8 times), low monocytes, low eos or low neutrophils and one time I had low lymphocytes as well. Can reactivated Herpes viruses cause that (weaken the immune system/cause low lymphocytes) or do you think this is persistent sars cov 2?

I have some acyclovir 400mg lying around have been taking them and it helps with the persistent low grade fever that I have been dealing with since i got sick back in June 2020 but it comes back when I stop taking acyclovir. I'm trying to see if I should buy valtrex or famciclovir. Don't have a doctor atm :(

As a rough guide, if your immune markers like neutrophils, lymphocytes etc comeback low, it's possible your immune system is tiring or immune exhaustion from a chronic infection or immune deficiency and be good to get more advanced immune testing done like immunoglubulins done as you might be a candidate for immunoglobulin therapy. If they are high it indicates a current ongoing infection your immune system is fighting.
I say a rough guide as you can have have some markers high and some low at the same time.

Is sars cov 2 persistent? I don't know a great deal about it specifically but I guess it's possible for any infection. With cfsme if I could generalise it into 2 main infectious theories, the first would be the hit and run theory. The initial triggering infection causes the damage and leaves. This damage could be neurological and involve the hpa axis where hormones etc are involved that control many Bodily function like heart and blood pressure causing pots. Also may dysregulate the immune system and latent infections like the herpes viruses can reactivate as well as some bacterial infections like mycoplasma pneumonia or chlamydia pneumonia can be common. Also could be easier to pick up new infections like a herpes infection such as ebv mono etc. But it may leave the pt with no infection or immune issues but many neurological issues. This first theory is possibly what's going on with long haulers covid??? If they can't find sars cov2 persisting.

The second theory is the initial triggering infection remains and becomes a chronic active infection. All the above can happen to some degree or not. Some people may have just chronic ebv and if treated properly and early enough can fully recover. There's some research showing the longer one is ill with cfsme, the more infections they tend to have. There also seems to be a cut off mark of 3 years where complete recovery can happen either with treatment or just spontaneously but after 3 years this becomes more rare, although people can still improve significantly.

If acyclovir is helping you, that's a good sign and maybe indicating ebv is an issue???
I'd start with whichever is cheaper out of valtrex or famvir, seen as though acyclovir seems to help you. Valtrex converts to acyclovir but you don't have to take it as frequently as acyclovir. You could dose valtrex twice a day and get good results. Otherwise give famvir a shot. Just plan on giving the antivirals a few months before making a judgement on whether they help or not.
 
Messages
21
As a rough guide, if your immune markers like neutrophils, lymphocytes etc comeback low, it's possible your immune system is tiring or immune exhaustion from a chronic infection or immune deficiency and be good to get more advanced immune testing done like immunoglubulins done as you might be a candidate for immunoglobulin therapy. If they are high it indicates a current ongoing infection your immune system is fighting.
I say a rough guide as you can have have some markers high and some low at the same time.

Is sars cov 2 persistent? I don't know a great deal about it specifically but I guess it's possible for any infection. With cfsme if I could generalise it into 2 main infectious theories, the first would be the hit and run theory. The initial triggering infection causes the damage and leaves. This damage could be neurological and involve the hpa axis where hormones etc are involved that control many Bodily function like heart and blood pressure causing pots. Also may dysregulate the immune system and latent infections like the herpes viruses can reactivate as well as some bacterial infections like mycoplasma pneumonia or chlamydia pneumonia can be common. Also could be easier to pick up new infections like a herpes infection such as ebv mono etc. But it may leave the pt with no infection or immune issues but many neurological issues. This first theory is possibly what's going on with long haulers covid??? If they can't find sars cov2 persisting.

The second theory is the initial triggering infection remains and becomes a chronic active infection. All the above can happen to some degree or not. Some people may have just chronic ebv and if treated properly and early enough can fully recover. There's some research showing the longer one is ill with cfsme, the more infections they tend to have. There also seems to be a cut off mark of 3 years where complete recovery can happen either with treatment or just spontaneously but after 3 years this becomes more rare, although people can still improve significantly.

If acyclovir is helping you, that's a good sign and maybe indicating ebv is an issue???
I'd start with whichever is cheaper out of valtrex or famvir, seen as though acyclovir seems to help you. Valtrex converts to acyclovir but you don't have to take it as frequently as acyclovir. You could dose valtrex twice a day and get good results. Otherwise give famvir a shot. Just plan on giving the antivirals a few months before making a judgement on whether they help or not.
Thank you so much for all the info! My globulin was high but I think it's not the same as immunoglobulin, right?

I have been feeling nauseated since October of 2021 after a stressful event. Is it a common symptom with CMV? Did you ever have nausea as a symptom? Eye floaters?
 
Last edited:
Messages
21
Hi everyone,

I've lost the IgG of EBV, which infected me 12 years ago, starting my M.E. My immunologist said she have never seen a person who had lost IgG.

Have some of you lost IgG of EBV or of any other virus/bacteria?

I don't have IgG for any other virus/bacteria.
Hi, you don't have any EBV IgG, no nuclear antigen, no VCA IgG, no EBV early antigen IgG too?

Do you have IgG for cytomegalovirus? Hhv-6, etc?
 
Messages
21
If acyclovir is helping you, that's a good sign and maybe indicating ebv is an issue???
I'd start with whichever is cheaper out of valtrex or famvir, seen as though acyclovir seems to help you. Valtrex converts to acyclovir but you don't have to take it as frequently as acyclovir. You could dose valtrex twice a day and get good results. Otherwise give famvir a shot. Just plan on giving the antivirals a few months before making a judgement on whether they help or not.
Yeah, EBV VCA IgG is negative while EBNA is off the chart high so I think I have reactivated EBV or some kind of low level chronic infection. Is it called abortive infection according to Dr Lerner? Or maybe I also have reactivated CMV, not sure. Last time (08/2021) it shows no reactivated CMV (IgM negative) but I guess it could have been reactivated due to high stress since that test.

I have been taking acyclovir 400mg-800mg/day and I noticed that even with just 400mg/day, I didn't have a low grade fever for a good 3-4 hours maybe. Is valacyclovir 500mg 2x a day a good dose or do you think I should go with 1g 2x a day? Thanks
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Yeah, EBV VCA IgG is negative while EBNA is off the chart high so I think I have reactivated EBV or some kind of low level chronic infection. Is it called abortive infection according to Dr Lerner? Or maybe I also have reactivated CMV, not sure. Last time (08/2021) it shows no reactivated CMV (IgM negative) but I guess it could have been reactivated due to high stress since that test.

I have been taking acyclovir 400mg-800mg/day and I noticed that even with just 400mg/day, I didn't have a low grade fever for a good 3-4 hours maybe. Is valacyclovir 500mg 2x a day a good dose or do you think I should go with 1g 2x a day? Thanks
I found PCR tests are a lot more useful than antibody tests as my body doesn't make antibodies properly. I had several doctors miss my EBV and HHV6 because they were just looking at antibody titers.

I have had documented,,PCR positive reactivations of both EBV and HHV6 over 9 years after immune system hits, like my COVID shots, dental surgery, cataract surgery, and cancer treatment.

Each time they go away with high dose and now, combined antivirals, and my doctors realize this happens. I also gave recurrent HSV2 that flares when I'm run down. I am on a maintenance program of 2x450mg valganciclovir and 2x400mg acyclovir to keep them at bay, then double up if anything flares and add famciclovir if it's not enough.

These articles show how various EBV antibody combinations are interpreted IN HEALTHY PEOPLE WiTH COMPETENT IMMUNE SYSTEMS, but if your immune system is less than competent, like mine, the antibody tests can give a doctor the false impression that the virus isn't active when it is.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC497621/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782265/

https://www.researchgate.net/public...of_primary_EBV_infection_and_EBV_reactivation

I also strongly recommend testing immunoglobulins with subclasses, particularly IgG subclasses as well as other immune system testing if people have ongoing issues with viruses. I also get intravenous immunoglobulins to help me fight off infections. They have been critical to my recovery.
 
Last edited: