Hip
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Yes I saw it, but for reasons explained in this above post, antibody testing may be better. PCR often misses active infections in ME/CFS patients.
Studies find HHV-7 active in ME, yet ME Drs often don't test for it & Valcyte doesn't work for HHV-7
- Thread starter Hip
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Yes I saw it, but for reasons explained in this above post, antibody testing may be better. PCR often misses active infections in ME/CFS patients.
Ema
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Yes, IV, maybe just shy of a full year, as a patient of Dr Lerner’s. I think I did 20 something, one every two weeks.
Hip, thenk you for your attention to the problem identified in the title.
I want to draw your attention to the fact that there is one more possibility to reveal high activity of HHV7. Despite the fact that the main reservoir of the persistence of HHV7 is lymphocytes with a CD4 marker, the place of its replication over the visible, like for HHV4, is the salivary glands. Despite the fact that in the vast majority of people the analysis of the PCR of saliva on HHV7 gives a positive result, a load of more than 500,000 copies in mL of saliva is likely to indicate an active process, while an IgG level in the plasma or cerebral is likely to give a dubious result . Do you have any opinion or information on this matter?
I would also like to ask you why the fact that HHV7 does not destroy lymphocytes with a CD4 marker, in contrast to HIV, is explained.
A commercial analysis of IgG and IgM plasma levels for HHV7 is available to a wide range of patients, for example, at the MDI Laboratorien (Medizinisch-Diagnostische Institute) in Germany.
I want to draw your attention to the fact that there is one more possibility to reveal high activity of HHV7. Despite the fact that the main reservoir of the persistence of HHV7 is lymphocytes with a CD4 marker, the place of its replication over the visible, like for HHV4, is the salivary glands. Despite the fact that in the vast majority of people the analysis of the PCR of saliva on HHV7 gives a positive result, a load of more than 500,000 copies in mL of saliva is likely to indicate an active process, while an IgG level in the plasma or cerebral is likely to give a dubious result . Do you have any opinion or information on this matter?
I would also like to ask you why the fact that HHV7 does not destroy lymphocytes with a CD4 marker, in contrast to HIV, is explained.
A commercial analysis of IgG and IgM plasma levels for HHV7 is available to a wide range of patients, for example, at the MDI Laboratorien (Medizinisch-Diagnostische Institute) in Germany.
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Hip
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That's interesting. Is an HHV-7 salvia test commercially available, do you know?
It's usually experienced ME/CFS specialist doctors who will know the right tests for a given virus in ME/CFS. Antibody tests are the ones usually used by ME/CFS doctors, because antibody tests can detect chronic intracellular infections hidden in the tissues. In the case of enterovirus ME/CFS, we know that there is a chronic intracellular tissue infection in ME/CFS patients.
I cannot find the HHV-7 test on their website.
I don't know much about how HIV destroys CD4 T-cells, but it may relate to the fact that HHV-7 is often in a state of latency in CD4 cells, whereas HIV is constantly active in CD4 cells (HIV actually exists as an abortive infection in CD4 cell, and abortive infections are constantly active, but produce no new viral particles).
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Hi, Hip.
Here is the direct link http://www.mdi-labor.de/en/service-directory/?tx_laboratoryeditor_pi1[s_uid]=2986 for IgG and IgM antibodies analyzes for HHV7 by blood. The result is the measured antibody titers.
The PCR test for saliva for the presence of HHV7 is technologically even easier than for whole blood and is, no doubt, available on the same test systems as for blood.
If there is a practical interest, I can contact you by e-mail.
Here is the direct link http://www.mdi-labor.de/en/service-directory/?tx_laboratoryeditor_pi1[s_uid]=2986 for IgG and IgM antibodies analyzes for HHV7 by blood. The result is the measured antibody titers.
The PCR test for saliva for the presence of HHV7 is technologically even easier than for whole blood and is, no doubt, available on the same test systems as for blood.
If there is a practical interest, I can contact you by e-mail.
Hip,
You are the best, thanks So much for all of your research, insight and objectivity. Recently my CFS flared up due throat infection and flu-like symptoms. it seems everyone in LA is getting this flu. Now I have a dry cough, and my throat feels like it closing, then I get some anxiety. I tried your anxiety suggestions, but this dry cough and swallowing issues still is creating problems.
You are the best, thanks So much for all of your research, insight and objectivity. Recently my CFS flared up due throat infection and flu-like symptoms. it seems everyone in LA is getting this flu. Now I have a dry cough, and my throat feels like it closing, then I get some anxiety. I tried your anxiety suggestions, but this dry cough and swallowing issues still is creating problems.
Ema
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I finally got around to testing this and it was negative for both IgG (<1:320) and IgM (<1:20).
frederic83
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Where did you send the test ? The reference range <320, isn't it a bit high ?
Ema
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Labcorp. The note said that below that most everyone was positive so it wasn’t very useful but above that mark it was indicative of a recent infection. They didn’t use those words exactly, but that was the gist of it.
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This is interested.I had a spinal tap in 2012 after I first because sick and I had a positive pcr to hhv7 in my CSF,Dr put me on Valcyte,I go to Stanford CFS clinic now,nobo no wants to treat with IV therapy.
Ema
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Almost! I can't remember the timeline exactly anymore but I did about 20 IVs, each two weeks apart. So that would be about 40 weeks or 9 months.
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Hello! I am the author and administrator of the very Russian-speaking forum dedicated to the CFS. I have also been patient of Dr. Maltsev, who have been treated me in Kiev for 2 years. My diagnosis: primary immunodeficiency, EBV, type 7 herpes, dysgammaglobulinemia, reduction of NK cells, autoimmune enterocolitis and chronic fatigue syndrome, mannose-binding protein deficiency.
After a year of therapy (half a year from which was intense and included antiviral drugs, immunoglobulin, peptide drugs, nootropics, antidepressants, hematopoietic stimulants and others), I live almost full life.
The chronic fatigue syndrome has almost disappeared, the autoimmune problems remain. And although I understand that in the future I may need periodic or even permanent therapy again (after all, I have a genetic defect in the immune system, the so-called minor innate immunodeficiency or primary immunodeficiency, which prevents the immune system from working normally) for a patient who was bed-bound it`s a real gift.
If someone wants to know my story in more detail, just write me
I want to make another remark right away. Antibodies are not an indicator of infection activity, because they do not reflect the amount of the virus, but the immune response, its strength. If there are big amount of virus but the immunity is defective, then this will be a weak response and few antibodies, but not a virus!. So activation marker is PCR. Not in saliva, but in the blood. If DNA viruses are absent in the blood plasma, then you need to pass PCR in whole blood and look there. The absence of virius DNA in the blood plasma does not mean its absence in whole blood.
My doctor thinks that activation is the presence of DNA of a virus in whole blood or in plasma, reactivation of the virus begins exactly inside the cells, and the leukocytes infected with the virus are normally killed by NK cells and T-killers. if this does not happen, then there is an activation of the virus and simultaneously a defect in the activity of NK cells /T-killers.
In addition, he believes that for the onset of chronic fatigue syndrome it is enough to have type 7 herpes in the blood plasma, and for serious organ damage (brain and peripheral nerves, first of all, the type 7 herpes virus is very neurotrophic) it is necessary that the virus be detected already in plasma. what is considered a case of extreme herpes activity.
According to my own observations ( I have more than 1,700 participants in the folrum) those who were able to diagnose activation of herpes type 7 — practically all are bed-bound patients struck by severe CFS. If patients have only EBV they have other symptoms than herpes 7 or herpes type 6. In addition, the state of immunity matters - congenital and unnye problems are practically not amenable to complete cure and remission is unstable and short.
I also want to note that without the adjuvant therapy prescribed in conjunction with an antiviral drug, as well as without properly and individually selected immunocorrection, the treatment is practically unsuccessful, and there is practically no response to antiviral drugs in monotherapy.
After a year of therapy (half a year from which was intense and included antiviral drugs, immunoglobulin, peptide drugs, nootropics, antidepressants, hematopoietic stimulants and others), I live almost full life.
The chronic fatigue syndrome has almost disappeared, the autoimmune problems remain. And although I understand that in the future I may need periodic or even permanent therapy again (after all, I have a genetic defect in the immune system, the so-called minor innate immunodeficiency or primary immunodeficiency, which prevents the immune system from working normally) for a patient who was bed-bound it`s a real gift.
If someone wants to know my story in more detail, just write me
I want to make another remark right away. Antibodies are not an indicator of infection activity, because they do not reflect the amount of the virus, but the immune response, its strength. If there are big amount of virus but the immunity is defective, then this will be a weak response and few antibodies, but not a virus!. So activation marker is PCR. Not in saliva, but in the blood. If DNA viruses are absent in the blood plasma, then you need to pass PCR in whole blood and look there. The absence of virius DNA in the blood plasma does not mean its absence in whole blood.
My doctor thinks that activation is the presence of DNA of a virus in whole blood or in plasma, reactivation of the virus begins exactly inside the cells, and the leukocytes infected with the virus are normally killed by NK cells and T-killers. if this does not happen, then there is an activation of the virus and simultaneously a defect in the activity of NK cells /T-killers.
In addition, he believes that for the onset of chronic fatigue syndrome it is enough to have type 7 herpes in the blood plasma, and for serious organ damage (brain and peripheral nerves, first of all, the type 7 herpes virus is very neurotrophic) it is necessary that the virus be detected already in plasma. what is considered a case of extreme herpes activity.
According to my own observations ( I have more than 1,700 participants in the folrum) those who were able to diagnose activation of herpes type 7 — practically all are bed-bound patients struck by severe CFS. If patients have only EBV they have other symptoms than herpes 7 or herpes type 6. In addition, the state of immunity matters - congenital and unnye problems are practically not amenable to complete cure and remission is unstable and short.
I also want to note that without the adjuvant therapy prescribed in conjunction with an antiviral drug, as well as without properly and individually selected immunocorrection, the treatment is practically unsuccessful, and there is practically no response to antiviral drugs in monotherapy.
Hip
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Thank you for posting your story and observations, @Violetta Kolosova. Glad to hear you are doing so well.
Your ME/CFS forum looks interesting, I am going to read it using Google translation.
This is a controversial area, as the science of ME/CFS is very unsure.
Many ME/CFS patients have chronically high IgG antibodies to the main viruses linked to ME/CFS.
Normal infectious disease doctors will ignore high IgG if IgM is low, and just diagnose past infection.
But ME/CFS doctors will view high IgG antibodies as evidence of an infection somewhere in the body, such as in the body tissues, and may then treat with antivirals when IgG is high.
But it's true that if you have immune abnormalities, then this can affect IgG levels.
In many ME/CFS patients, blood PCR is often negative. Dr John Chia in California has done a lot of research on PCR testing in enterovirus ME/CFS.
Dr Chia found that using the most sensitive reverse transcription-PCR on whole blood samples from enterovirus ME/CFS patients, only 35% of patients tested positive for enterovirus. So Chia concluded that PCR is not a sensitive test for enterovirus infection in ME/CFS.
Interestingly, Chia found 70% of the severe bedridden patients positive by PCR, but only in 12% of the less ill patients where positive. So in the more severe patients, there is more virus in the blood. References for these figures here.
The reason you do not find much enterovirus in the blood ME/CFS patients is because the infection is located in the body tissues (muscle tissues, intestine and brain).
The "gold standard" method for enterovirus testing in ME/CFS is via muscle tissue or stomach tissue biopsy: if you take a sample of stomach tissue from an enterovirus ME/CFS patient, and test the stomach tissue using PCR, then you usually get a positive result. This is how Dr Chia tests for enterovirus in his ME/CFS patients.
Unfortunately there is very little research looking at herpesvirus infections in the muscles of ME/CFS patients; but one British study which tested the muscle tissue for both enterovirus and Epstein-Barr virus found both viruses present in ME/CFS — but not in the same patient: the ME/CFS patient either had enterovirus or EBV infection in their muscles.
This makes sense, because we know that ME/CFS is usually either linked to enterovirus or herpesvirus.
The study says:
Unfortunately enterovirus is often ignored by many ME/CFS doctors. But Dr Chia's research suggests over 50% of ME/CFS cases are due to enterovirus (the two enteroviruses linked to ME/CFS are: coxsackievirus B and echovirus).
It's also hard to test for enterovirus; most antibody testing methods (like ELISA, IFA and CFT) are not sensitive enough to detect chronic enterovirus infection in ME/CFS patients. Only a lab antibody test which uses the neutralization method of antibody detection is sensitive enough to detect enterovirus.
In the Ukraine, there is on lab called http://mediasnab.com.ua which I believe offers a neutralization antibody for the enteroviruses linked to ME/CFS: coxsackievirus B test and echovirus test. I am not 100% sure that it is neutralization though, because of translation issues.
Some enterovirus ME/CFS patients improve using the immunomodulator oxymatrine, and tenofovir is also useful. Interferon therapy works very well for enterovirus ME/CFS, but unfortunately the virus usually returns after some months.
This may follow Dr Chia's research which found that PCR blood tests for enterovirus were more likely to be positive in severe patients, compared to mild or moderate patients.
Your ME/CFS forum looks interesting, I am going to read it using Google translation.
This is a controversial area, as the science of ME/CFS is very unsure.
Many ME/CFS patients have chronically high IgG antibodies to the main viruses linked to ME/CFS.
Normal infectious disease doctors will ignore high IgG if IgM is low, and just diagnose past infection.
But ME/CFS doctors will view high IgG antibodies as evidence of an infection somewhere in the body, such as in the body tissues, and may then treat with antivirals when IgG is high.
But it's true that if you have immune abnormalities, then this can affect IgG levels.
In many ME/CFS patients, blood PCR is often negative. Dr John Chia in California has done a lot of research on PCR testing in enterovirus ME/CFS.
Dr Chia found that using the most sensitive reverse transcription-PCR on whole blood samples from enterovirus ME/CFS patients, only 35% of patients tested positive for enterovirus. So Chia concluded that PCR is not a sensitive test for enterovirus infection in ME/CFS.
Interestingly, Chia found 70% of the severe bedridden patients positive by PCR, but only in 12% of the less ill patients where positive. So in the more severe patients, there is more virus in the blood. References for these figures here.
The reason you do not find much enterovirus in the blood ME/CFS patients is because the infection is located in the body tissues (muscle tissues, intestine and brain).
The "gold standard" method for enterovirus testing in ME/CFS is via muscle tissue or stomach tissue biopsy: if you take a sample of stomach tissue from an enterovirus ME/CFS patient, and test the stomach tissue using PCR, then you usually get a positive result. This is how Dr Chia tests for enterovirus in his ME/CFS patients.
Unfortunately there is very little research looking at herpesvirus infections in the muscles of ME/CFS patients; but one British study which tested the muscle tissue for both enterovirus and Epstein-Barr virus found both viruses present in ME/CFS — but not in the same patient: the ME/CFS patient either had enterovirus or EBV infection in their muscles.
This makes sense, because we know that ME/CFS is usually either linked to enterovirus or herpesvirus.
The study says:
Unfortunately enterovirus is often ignored by many ME/CFS doctors. But Dr Chia's research suggests over 50% of ME/CFS cases are due to enterovirus (the two enteroviruses linked to ME/CFS are: coxsackievirus B and echovirus).
It's also hard to test for enterovirus; most antibody testing methods (like ELISA, IFA and CFT) are not sensitive enough to detect chronic enterovirus infection in ME/CFS patients. Only a lab antibody test which uses the neutralization method of antibody detection is sensitive enough to detect enterovirus.
In the Ukraine, there is on lab called http://mediasnab.com.ua which I believe offers a neutralization antibody for the enteroviruses linked to ME/CFS: coxsackievirus B test and echovirus test. I am not 100% sure that it is neutralization though, because of translation issues.
Some enterovirus ME/CFS patients improve using the immunomodulator oxymatrine, and tenofovir is also useful. Interferon therapy works very well for enterovirus ME/CFS, but unfortunately the virus usually returns after some months.
This may follow Dr Chia's research which found that PCR blood tests for enterovirus were more likely to be positive in severe patients, compared to mild or moderate patients.
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Thank you for your answer. I already know that CFS can be caused by enteroviruses, Coxsackie virus and echovirus. I checked antibodies for these types of viruses in this laboratory https://redgerlab.kiev.ua
and in a number of Russian laboratories, in which the analyzes were most likely poorly done.
However, I don’t remember if they are neutralization tests. I also read that it is possible to pass Elispots for these tests in Arminlabs laboratories. I am from Russia, tests, even routine ones, this is a huge problem.
I also do not spread the schemes of my treatment ( they changed from month to month) everywhere per Internet because of the poor quality of Russian medicine people begin to self-medicate not thinking that the schemes contain heavy drugs.
As for intestinal biopsy, I plan to do a biopsy in St. Petersburg primarily for herpes viruses (unfortunately this cannot be done for the herpes virus type 7, only on EBV, CMV,HHV6). This is important, because even if the DNA of the virus is gone from the whole blood, in my opinion, the virus can remain in the tissues and cause autoimmune processes. I will try to find out whether it is also possible to do a biopsy for coxsacki, echoviruses and enteroviruses.
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I know a guy from the city of Rostov, who suffers from a CFS, who has found EBV DNA in a muscle biopsy from his leg and two girls who had herpes DNA found in a biopsy of the intestine and stomach.
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It`s not a lab but a supplier of reagents for labs.
Hip
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OK, good. I just wanted to make sure you knew, because I did not see much talk about enteroviruses on your forum, and lots of ME/CFS patients on this forum as well do not consider enteroviruses.
Unfortunately the ArminLabs coxsackievirus B test is more or less useless. It only tests for coxsackievirus B1 (and coxsackievirus A7), and does not test for any of the other serotypes of coxsackievirus B (it does not test for CVB2 to CVB6). The most common CVB serotypes in ME/CFS are CVB3 and CVB4, according to Dr Chia.
ArminLabs do not tell you on their website that their Coxsackie test only tests for CVB1, but when I wrote to ArminLabs, that's what they told me. More info here. I think they are being misleading and a little dishonest in not explaining their test only covers CVB1.
It is very hard to find antibody neutralization tests for CVB. The only two labs in the world that I know have this test are ARUP Lab in the US, and the Hellenic Pasteur Institute in Greece. Here in the UK, we do not have any labs that offer neutralization antibody tests.
That's great that you are able to do a tissue biopsy testing for viruses in Russia. That is very thorough medical testing. I do not know anywhere in Europe or the US which tests ME/CFS patients by tissue biopsy, except for Dr Chia, who tests stomach tissue biopsies (but for enterovirus only).
Thanks for letting me know, I mistakenly thought it was a testing lab.
If you do find any testing labs which offer CVB or echovirus antibody neutralization tests, please let me know, because I am trying to find more labs where ME/CFS patients can be tested for enterovirus. Thanks.
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Hip
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May I ask: when you say the "adjuvant therapy prescribed in conjunction with an antiviral drug", do you mean the immunoglobulin, peptide drugs, nootropics, antidepressants and hematopoietic stimulants?
Was all this treatment prescribed by Dr Maltsev? He seems like a great doctor. Does he specialize in treating ME/CFS?
@Violetta Kolosova
Hello Violetta,
1) Would you be able to give me the address to Dr Maltsev's clinic in Kyiv please? (I was unable to find it, because there are several Maltsev named doctors in Ukraine.)
2) Do you know how often Dr Maltsev treats CFS/ME? There are millions of sufferers around the world. And thus millions of parents and children who are desperate for relief.
3) I am a bit puzzled because if Dr Maltsev has success, then surely his protocol would become known in other parts of the world. He does not seem to have joined the international specialists.
4) I would like to call his clinic and find out what they are offering. Did they do all your testing once you went over to Dr Maltsev? And did you have to stay in Kyiv, or were you able to return back to Russia and continue treatment there? Lodging in Kyiv is expensive.
5) If you could offer a few words about the facilities in that clinic in Ukraine, I would appreciate this.
6) I read all your earlier posts from last year and so on, and I very happy you feel better.
7) I know you understand that this situation with this illness is critical, as there is no standardised treatment. Skepticism is normal, too, however. We have travelled all over the world for treatment and the result is nothing. We did not travel to Ukraine, because I know how hard it is for the Ukrainian citizens to get good medical help, and I know the strains on the system because of the war. But if you would be so kind as to let me know the name of the clinic, or their address, or even Maltsev's first name, I would be grateful. Thank you very much, and I will look into your website too. It looks very professional.
Hello Violetta,
1) Would you be able to give me the address to Dr Maltsev's clinic in Kyiv please? (I was unable to find it, because there are several Maltsev named doctors in Ukraine.)
2) Do you know how often Dr Maltsev treats CFS/ME? There are millions of sufferers around the world. And thus millions of parents and children who are desperate for relief.
3) I am a bit puzzled because if Dr Maltsev has success, then surely his protocol would become known in other parts of the world. He does not seem to have joined the international specialists.
4) I would like to call his clinic and find out what they are offering. Did they do all your testing once you went over to Dr Maltsev? And did you have to stay in Kyiv, or were you able to return back to Russia and continue treatment there? Lodging in Kyiv is expensive.
5) If you could offer a few words about the facilities in that clinic in Ukraine, I would appreciate this.
6) I read all your earlier posts from last year and so on, and I very happy you feel better.
7) I know you understand that this situation with this illness is critical, as there is no standardised treatment. Skepticism is normal, too, however. We have travelled all over the world for treatment and the result is nothing. We did not travel to Ukraine, because I know how hard it is for the Ukrainian citizens to get good medical help, and I know the strains on the system because of the war. But if you would be so kind as to let me know the name of the clinic, or their address, or even Maltsev's first name, I would be grateful. Thank you very much, and I will look into your website too. It looks very professional.
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@Hip just a question for you. Seems like your symptoms for CEFS will be worse if it hits your blood to a point able to be detected by PCR. Do you know if that process of hitting your blood has to happen with the initial infection or could it occur later in the process. Just wondered if there was any data on that, given it sounds like if you have IGG you still have an active infection--which i would think could then spread.