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Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

Messages
97
Location
Vancouver, WA
Hi @Learner1 .

About the results you've put in. The antibodies against EBNA I'm asking for are IgG (I forgot to put it in, sorry). Anyone who has been infected with Epstein Barr virus has these positive antibodies. But in our disease (as in multiple sclerosis) I think it's much higher than normal...

*snip!*

Another more invasive test is to perform PCR to EBV (does not have to be positive in the blood) on swollen tissue samples, such as the intestinal mucosa or muscle tissue if there is any myopathy. I would use other methods, such as in situ hybridization with a probe that detects EBV-coded RNA (EBER) and is considered the best test for locating latent EBV in tissue samples. O Immuno-FISH combining immunofluorescent staining for surface proteins (using antibodies directly conjugated to fluorochromes) and fluorescent in situ hybridization for EBV DNA. This technique allows simultaneous determination of the type of EBV-infected cells and quantification of the number of EBV copies in the infected cell, which demonstrates that EBV is present not only in B cells (in epithelial cells as well, for example).
.

Have yoiu noticed that EBV seems to be showing up in a lot of places? I've heard that it shows up in Alzheimer's, breast cancer, MS, lymphoma, and CF. I'm sure I've missed others.

Paul
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I keep seeing references to the involvement of macrophages in health outcomes. Examples:
  • a new avenue of pain treatment involves blocking macrophages.
  • MS treatment includes Rituximab, which lowers white blood cell counts.
  • EBV is an infection of white blood cells. Turns them into zombies.
What also is catching my attention is the recent interest in fasting as a health practice. Not for reasons of weight loss, although weight loss is normal, but for maintenance of the gut biology. But fasting also lowers white blood cell count. When the body thinks it is in survival mode, it starts doing some overdue 'housecleaning', including reducing excess white blood cells. Humanity used to experience short-term starvation much more frequently, and it might actually be what we evolved to tolerate and exploit. It might be an important health practice along with good sleep hygiene, healthy diet, physical activity, and socialization.

The research and understanding of the biological population of a healthy gut is incomplete, and I expect that to be the case for quite a while to come. The gut is complicated. It is a habitat with many still unknown species. In the meantime, I'm going to continue to experiment with fasting to see if that helps my symptoms.

Thanks for the research.

Paul

Should be able to find research showing ebv and cmv have ways of avoiding the immune system. One i recall is it somehow lowers interferon which has direct antiviral effects. But the interesting thing i thought was that interferon stimulates nk function, so low interferon can lower nk function.
 
Messages
68
Agree.

But id just like to see more drugs that increase nk function in general just because many infections are implicated in cfsme. Even if ebv is an issue, im guessing its probably suppressing the immune system and allowing coinfections, thats my reasoning behind some type of drug to increase nk function in a general way.

Ive seen in russia they sell ivig specific to different infections such as ebv and cmv. Unsure of how effective they would be??

Although in some patients the cause of CFS is EBV or another pathogen, it is also necessary to treat the reactivation of other viruses that have been passed and were in latency. This occurs, for example, in AIDS, not only HIV infection is treated but also reactivations of other viruses due to immunodeficiency. CFS is actually a type of functional immunodeficiency acquired by MHC II deficiency.

I don't know the treatment you're talking about. Could you pass me some more information? And when I can, I'll take a look at it. What I do know is that for parvovirus B19 reactivations, they usually give intravenous immunoglobulin therapy.
 
Messages
68
I keep seeing references to the involvement of macrophages in health outcomes. Examples:
  • a new avenue of pain treatment involves blocking macrophages.
  • MS treatment includes Rituximab, which lowers white blood cell counts.
  • EBV is an infection of white blood cells. Turns them into zombies.
What also is catching my attention is the recent interest in fasting as a health practice. Not for reasons of weight loss, although weight loss is normal, but for maintenance of the gut biology. But fasting also lowers white blood cell count. When the body thinks it is in survival mode, it starts doing some overdue 'housecleaning', including reducing excess white blood cells. Humanity used to experience short-term starvation much more frequently, and it might actually be what we evolved to tolerate and exploit. It might be an important health practice along with good sleep hygiene, healthy diet, physical activity, and socialization.

The research and understanding of the biological population of a healthy gut is incomplete, and I expect that to be the case for quite a while to come. The gut is complicated. It is a habitat with many still unknown species. In the meantime, I'm going to continue to experiment with fasting to see if that helps my symptoms.

Thanks for the research.

Paul

Rituximab has a problem, as I mentioned in another post, that only goes against CD20 and may not kill other types of cells, so it continues the EBV reservoir.

Infected cells/cancerous cells use the Warbug effect to increase glucose uptake, which lowers blood glucose and triggers metabolic mechanisms that begin to catabolize proteins and fatty tissue to generate glucose and thus increase blood levels to normal. Exactly the same as fasting. These cells need this Warbug effect to perform their functions let's call them "malignant", including surviving immune system detection and multiplying. Many of these cancerous cells are actually cells with latent infection by some pathogen, but they are called cancerous when they begin to divide uncontrollably and spread to surrounding tissues and can form tumors.

What you're talking about is that fasting is beneficial because of this. Reducing the intake of carbohydrates prevents these bad cells from taking on so much energy to perform their functions. However, as this is a disease that also affects the digestive system and causes malabsorption of food causing weight loss, great care must be taken when making this type of diet.
 

SunMoonsStars

Senior Member
Messages
159
An effective treatment to increase nk function would go along way in treating different viral infections implicated in cfsme. Low nk function found in many cfsme should be reguarded as a functional immune deficiency and treatment should be aimed at the nk cell function. Its been looking straight at cfs research for decades but only a few have noticed it seems. Only the old drug immunovir has been used but only with minor effects, new research into this is needed.
Exactly I at least have my immunologist and neurologist identify this as an Immune Deficiency. Yet the treatments for Functional NK Deficiency and even Cellular NK Deficiency is IVIG and Anti Virals. Babies born with this from genetic cause .. It is genetic are only offered these. If a viral infection gets life threatening they may turn to IL2 or Interferon too and Bone Marrow Stem Cell transplants if its life threatening. I was talking to my immunologist today about this subject and he did some more research on my behalf. As we treat viruses and EBV finally not IGM positive my B Cells have decreased by half each of last two years and is below normal now in the 60s and were up around 290 to start. Low is 90 range. We are hoping they rebound and are only dying off with the EBV virus hopefully. We are adding stem cell therapy now too and so far so good.
 
Messages
68
Good morning everyone, I have just created a new thread about a treatment with own T lymphocytes that have just been published in Nautre magazine. This treatment is the adoptive immunotherapy I was talking about, but it has been improved. Instead of cultivating own CD8 lymphocytes specific to EBV, they have managed to modify and reprogram own T lymphocytes to recognize and destroy any cancer or infected cells, using the genetic editing technique CRISPR. This would allow more CFS subtypes to be treated and more personalized treatment, since those people who had CFS along with some other autoimmune diseases could use this technique for both pathologies. Even for patients who had problems with more than one pathogen.
 
Messages
73
I have a lot of respect for you @Manuel for writing this article. What an achievement.

I agree the T-cell treatment sounds very promising. Hopefully we will get access to a treatment like this one day, but I’m afraid the cost is a major problem for now.

In the meantime, I was wondering if anyone has any ideas about IFN-gamma as a treatment?
 
Messages
68
Thank you very much @RobR83 @Vassie @frederic83
I'm sorry I didn't answer sooner. I've been sick for several days.
I have made an introduction to explain how the immune system works in a summarized way and how the Epstein Barr virus manages to avoid it. I have done this so that the article I uploaded to the forum can be better understood. I hope it'll be helpful.
You have it in this link.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
If one has a very weak immune system so that we seem to pick up endless viruses or bacteria, would there be any downside to taking Lactoferrin?

Pam

I've noticed symptoms I associate with increased inflammatory response: like that encephalitic-type pain at the back of the neck. When I was more severe, Lactoferrin was hard to tolerate. I started taking it in the evening before I went to bed with plenty of water, and sleep through any immune activation symptoms. I still take half the recommended dose, too.

If I don't take it, I am much more exhausted the next day.

I have milk protein intolerance that is severe enough that it mimics IgE-type responses, but don't note an increase in any of these symptoms despite the fact that Lactoferrin is milk-derived. I take Symbiotics brand Lactoferrin, in the pink bottle, 1 pill in the PM.

Should be added that my experience may not reflect yours. We are all different.
 
Messages
24
Location
San Rafael, CA
Thank you Manuel-

Very interesting article. I had CFS and was also diagnosed with both EBV and CPn but am recovered. Before I found the right Doctor and while researching my symptoms I saw some symtoms shared with MS. Then found a study stating MS patients don't get gout. Uric acid causes gout but is also an anti-oxidant and scavenger of peroxynitrite. I also read where the proliferation of B cells during an infection deplete uric acid, with immune response then impared. Low levels of uric acid is a marker for CFS. Possibly high levels of uric acid occur when B cells are low.

Doug
 
Messages
68
Hi @doug , sorry I didn't respond before because I've been sick. I am also trying to make a website with all the information that is in the article. In addition to its relationship to other diseases and a brief introduction to how the immune system works.

About what you commented, I didn't quite understand what you said. Did you recover from everything or just the CNp? What treatments did you follow?
Greetings, Manuel.
 
Messages
68
Good afternoon,
I've been sick and I haven't been able to participate much in the forum. I have added other tests that would help in the diagnosis of CFS, especially for the Epstein Barr virus infection subgroup.

1. Activated T lymphocytes (CD3+, HLA-DR+), (CD4+, HLA-DR+): A low level of activated T lymphocytes indirectly indicates a decrease in the antigenic presentation of HLA-II. This decrease in CD4+ HLA-DR+ T lymphocytes can be seen in other EBV-associated diseases, for example in children with EBV-associated haemophagocytic lymphohistiocytosis. This is caused by the latent proteins of this virus in antigen-presenting cells.

2. Molecular typing of the HLA system: to verify the existence of certain HLA alleles predisposed to develop EBV-associated diseases. For example: HLA-DR15 and HLA-DQ6 predispose to develop multiple sclerosis but together with more factors. Depending on the type of HLA, it will indicate a greater or lesser genetic susceptibility to having difficulties in controlling this infection. HLA-DR would be the most interesting type of HLA in this case, because DR is a molecular type of class II MHC.

3. IgG antibodies against nuclear antigen (IgG anti-EBNA): these antibodies against this latent protein must be elevated due to a chronic latent infection, as in multiple sclerosis.

4. Increased CD4+ CD25+ FOXP3+ T reg lymphocytes in infected mucosa and blood.

5. Increase of T reg lymphocytes CD4+ CD25+ CCR7- These are the ones that remain in the tissues, and due to the infection an increase takes place.

6. Decrease of T reg lymphocytes CD4+ CD25+ CCR7+. These are the ones that recirculate through the lymph nodes. The infection decreases the expression of CCR7+.

7. Decrease in C3 and/or C4 levels occurs in infections. If C4a is elevated it indicates chronic inflammation.

8. Elevation of TGF-B and Il-10 by increased T reg.

9. Elevation of specific IgA against Epstein Barr in intestinal mucosa. Especially in the biopsies of terminal ileum, since it is in the small intestine where they are secreted. The most effective neutralizing antibodies against viruses that infect the host through the mucous membranes are usually of the igA isotype, since they block the virus in the mucous membrane itself, preventing it from accessing its target cell.

Tests 1,2,4,5,6,7,8 should be present in most CFS patients, as other pathogens also evade the immune system in this way. These pathogens manage to generate an acquired functional immunodeficiency through the expression deficit of class II molecules of the major histocompatibility complex. Although some also manage to decrease the class I molecules of the MHC. In other subgroups of SFC for other pathogens it would be necessary to look for specific IgA against the pathogen that we want to see in the intestinal biopsies.


Greetings.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Apparently this loss of igg antibodies later on was common in the lake Tahoe cfs outbreak. Is some peoples immune memory to ebv lost???

Yes, it seems correct that CFS patients may have real issues producing and maintaining a "normal" immune response to EBV

Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome

"when analyzing the EBV-specific memory B-cell reservoir in vitro a diminished or absent number of EBNA-1- and VCA-antibody secreting cells was found in up to 76% of patients"
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Yes, it seems correct that CFS patients may have real issues producing and maintaining a "normal" immune response to EBV

Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome

"when analyzing the EBV-specific memory B-cell reservoir in vitro a diminished or absent number of EBNA-1- and VCA-antibody secreting cells was found in up to 76% of patients"

Its very weird i think for a virus like ebv, that 95% of adults over 40yo, who supposedly have been exposed to ebv virus, but on this forum it appears that theres alot more than 5% who havent been exposed to ebv. Its definitely apart of the picture for many??
 
Messages
68
Good night everyone,
I have opened a new blog where I try to explain the SFC/EM from scratch, along with other diseases. It is still under construction but you can read the posts if you want. Showing how the immune system works in a simple way I try to explain this disease and others. Also that you can better understand the article that I posted on the forum a few months ago. This is the thread of the article:

I recommend this order:
-In the Immune System tab there are a series of sections that explain how the immune system works in a simple way. It is important to read all these sections in the order that comes to be able to understand the SFC/EM.
-Then click on DISEASES where infectious diseases appear and within these, there is the CFS/MS. There for now is only explained the subgroup by Epstein Barr infection and all the consequences, diagnosis etc.

You can follow it if you want via email, twitter or Facebook. You can also share what you want, the more we are and reach more people research, better understand this disease.

A big hug to everyone.

https://foropacientes.com/en/welcome/