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Mono Virus Discovery - Implications for ME/CFS?

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My ME/CFS doctor had explained to me a year ago that my autoimmune issues, including celiac, POTS, and MCAS were likely triggered by my EBV.

I read through the patent, and am a little concerned for what it means. It was developed with federal funding and seems to be patenting the use of any dose of any of the Column C treatments, many of which my doctors have already prescribed for me, for use on patients with any of these EBV causes autoimmune issues...what will the impact of this be? Treatment we can't afford that someone makes millions off of?
 

drob31

Senior Member
Messages
1,487
Quoting the article:


It looks like thymoquinone from the health supplement black seed oil (Nigella sativa) is particularly efficient at suppressing Epstein–Barr virus nuclear antigen 2 (EBNA2) protein, as well as LMP1 and EBNA1, at least in vitro.



As a dormant, non-active infection, Epstein-Barr virus can exist in one of 3 latency states. In the EBV latency I and latency II states, the virus does not produce EBNA2. However, in the EBV latency II state, the EBNA2 protein is synthesized by the virus.

This means that you do not have to have an active infection with EBV in order to be negatively affected by EBNA2, because even in latency, the EBNA2 protein can be manufactured.

According to Wikipedia, when EBV infects B-cells, it can enter the latency III state (one can thus speculate that destroying EBV-containing B-cells may be one mechanism by which rituximab ameliorates autoimmune disease).


So how about a combination of Famvir with black seed oil?
 

Gingergrrl

Senior Member
Messages
16,171
In the 10 month interval between mono and your other viral illness did you have major ME/CFS symptoms?

No, I was completely recovered from Mono during that ten month interval and thought that I had dodged a bullet b/c two years prior to Mono, I had FTS (Fluoroquinolone Toxicity Syndrome) and was sick for about 1.5 yrs. To have recovered from FTS and Mono was beyond my wildest dreams. But then ten months later, in Jan 2013, I got sick again (new virus or reactivation of EBV, we do not know?) but it was only two mos after moving into a rental with toxic mold so a new immune trigger was added into the mix. I did not recover from that final hit to my immune system and in less than two weeks, I developed POTS and continued to go downhill until by the end of 2014, I had to use a wheelchair and 2015, we thought I was going to die of anaphylaxis. It was crazy when I look back on it all.

Found it very interesting that inflammatory arthritis and Celiac were included in the very likely to caused by EBV category

I thought that was really interesting, too.

My ME/CFS doctor had explained to me a year ago that my autoimmune issues, including celiac, POTS, and MCAS were likely triggered by my EBV.

I agree (and we have a smart doctor ;))

I read through the patent, and am s little concerned for what it means. It was developed with federal funding and seems to be patenting the use of any dose of any of the Column C treatments, many of which my doctors have already prescribed for me, for use on patients with any of these EBV causes autoimmune issues...what will the impact of this be? Treatment we can't afford that someone makes millions off of?

I missed this part. Where does it mention the proposed treatments for EBV mediated autoimmunity? Are they trying to jack up the prices on existing treatments or am I misunderstanding? Where is "Column C"?

Edit: I dowloaded the patent... is Column C in the patent or somewhere else? I looked at it but didn't understand what I was looking at! Is there a certain page number that lists the proposed treatments?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I missed this part. Where does it mention the proposed treatments for EBV mediated autoimmunity? Are they trying to jack up the prices on existing treatments or am I misunderstanding? Where is "Column C"?

Edit: I dowloaded the patent... is Column C in the patent or somewhere else? I looked at it but didn't understand what I was looking at! Is there a certain page number that lists the proposed treatments.
This is the subject of this patent, its a method of treating these diseases with the treatments listed.

See the Brief Summary 0004 on page 193, then the Detailed Description 0025 beginning on 196. Column C is at the right side of all the tables beginning on page 197, where:

Column A = transcription factor
Column B = disease
Column C = treatments​
 

Gingergrrl

Senior Member
Messages
16,171
This is the subject of this patent, its a method of treating these diseases with the treatments listed. See the Brief Summary 0004 on page 193, then the Detailed Description 0025 beginning on 196. Column C is at the right side of all the tables beginning on page 197, where:

Column A = transcription factor
Column B = disease
Column C = treatments

Thank you and I found it! I don't recognize most of the treatments they are listing but then I noticed that many of them are for cancer. I need to look at it more carefully when I have more time. Thx again :hug:
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Not all are for cancer. A quick glance at the tables found these that I am taking or have recently taken:
  • Hydrocortisone
  • Dexamethasone
  • Prednisolone
  • Estriol
  • Testosterone
  • Progesterone
  • Retinol
  • Acetyl cysteine
  • Curcumin
  • Telmisartan
I see other Column C treatments mentioned by PR patients, too.
 

Gingergrrl

Senior Member
Messages
16,171
Not all are for cancer. A quick glance at the tables found these that I am taking or have recently taken:

I only glanced at it really quickly and need to look at it further. I am curious what our doctor thinks of this research. The only med from your list that I take is Cortef (hydrocortisone). I did try Decadron (Dexamethasone) in 2016 after my first IVIG, which was infused too fast, but had horrible reaction to it. What is their intention with listing all of these different meds (sorry for my confusion).
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Abstract: "Disclosed herein are methods of treatment of various disease states in which an individual in need thereof if administered one or more therapeutic agents capable of modulating one or more transcription factors. Also disclosed are methods by which an individual may be treated for one or more disease states, in which loci in which transcription factors bind are detected."
 

Daffodil

Senior Member
Messages
5,875
i guess this explains why b cell depletion works temporarily. @Hip i wonder if, in people who get EBV as babies and / or dont develop mono, the virus remains in a latency state which does not produce NA2?

i didnt read the paper but how would antivirals help if the virus is in a latent state? wouldnt we need something like CRISPR gene editing or something?

another interesting article re: EBV NA2 and cancer:

https://watermark.silverchair.com/b...oFlNjG0k9op_juhFrJQCqSd20DMLfJ_NuNxcL574NWmjU
 

tiredowl

Senior Member
Messages
170
Location
Norway
I am even more confused. I've never had mono, and my EBV tests came back negative. Does that exclude EBV causing my fatigue at all?
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
If you are indeed EBV seronegative (very unlikely), then yes, it means the virus is not and has never been in your body at all. It can't be the cause of anything.

Are you really EBV negative, or just IgM negative, i.e. no active infection?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I am even more confused. I've never had mono, and my EBV tests came back negative. Does that exclude EBV causing my fatigue at all?
Have you had EBNA, EA, VCA IgG and IgM and a PCR? If all were negstive, then look elsewhere, like cytomegalovirus, HHV6, HHV7, HSV1 or 2, Parvovirus B19, Cocksackie, chlamydia pneumoniae, Lyme and coinfections, etc.
 

drob31

Senior Member
Messages
1,487
I don't know if Famvir will directly inhibit EBNA2, but it should do indirectly, by slowly lowering EBV levels after some years.

Ok, so how about this:


Famvir inhibits EBV, while blackseed oil prevents further gene expression from EBNA2 transcription factors, along with cimentidine which prevents EBV from docking with H2 receptors on lymphocytes.


Seems like a strong stack against EBV to me.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
I had a viral panel done through Breakspear here in the UK in about 2012 and I was very surprised to find that I tested positive and over the range for all the Herpes type viruses except EBV was in range but I came up positive on all the various tests for it so Breakspear said I had definitely had the illness whereas I didn't even know I had ever had EBV

However I will never forget that what I thought was 2 weeks + of flu in 1979 forever changed my life I couldn't seem to get over it and remember going to a health shop for the first time in my life and asking what I could take to get some energy back. Previously I was always a high energy sort of person who was very active and rarely sat still. (They gave me Brewers Yeast). When I finally started to feel a little better, maybe another 2 weeks had passed but one Saturday morning suddenly severe vertigo started that went on for days and then severe migraines. At first I thought it was going to be a migraine attack because on the odd occasion I had vertigo that would last about 20 minutes before the pain would start. I remember I was due to play tennis with a friend and rang her up to say I wouldn't be able to make it. Little did I know that the vertigo attacks would go on for weeks at a time sometimes so severe I would be bedridden and couldn't stand any stimuli apart from the radio on very softly.

Along with these horrid symptoms I developed severe anxiety because I found the vertigo so frightening and I felt like I had no control over it. The vertigo was so severe sometimes I didn't know if I was upright or not and what scared me was that if there had been a fire in the house I wouldn't have been able to move once my balance had gone completely.

These attacks went on from time to time coming with no warning and still with me having no control over them and eventually in 2002 a private doctor diagnosed me with Hashimotos and also adrenal insufficiency after blood and saliva tests. I started treatment with Prednisolone 5 mg and also dessicated thyroid meds plus a tiny amount of thyroxine. I had tried many psychological therapies during the years as I used to think I was causing these attacks because of the anxiety I felt but when I got confirmation of the endocrine issues it was such a huge relief.

(During the late 90s my health fell apart with me getting endless viruses/infections on top of the other stuff).

So since treatment of my adrenals and thyroid to this day I have never had another vertigo attack for which I am forever grateful. I can still get mild dizzy spells often linked to migraine but they are nothing like what I got for so many years which I have often felt almost destroyed my nervous system.

I wonder if it was indeed EBV that I got in 1979 and whether my experiences fit the picture outlined above.

Pam
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
I have a history of Mono, and for me, swollen lymph in the neck is one of my major symptoms which constantly flares up. Being a prevalent symptom of Mono, it always struck me as important. Perhaps those of us with a history of Mono, and tender lymph in the neck might need to pay close attention to this research.

A few years ago, I asked my doctor to prescribe me valacyclovir, which is a herpes virus viral DNA polymerase inhibitor. I personally found that my own health improved slowly in the years following.

The way this treatment works, is by blocking the function of the virus encoded DNA polymerase, limiting the capacity of the virus to infect new cells. Unfortunately, it mainly impacts cells which are undergoing lytic infection. The lytic infection cycle relies on the virus encoded DNA polymerase to replicate, however the latent lifecycles of the virus use human DNA polymerase instead, and the virus is replicated during cell division. Latently infected cells do not create new virions, however latently infected cells can 'switch' to lytic infection.

What this means, is that in order to lower the amount of latently infected cells, you need to basically keep taking acyclovir for extended periods and wait for latently infected B-cells to either die off, or switch to lytic mode.


From this paper, "Based on the half-life of EBV in patients treated with valacyclovir and assuming that valacyclovir acts similarly on B cells in tissues as it does in the blood, we estimate that it would take 6 years of 500 mg of valacyclovir once each day to eradicate 99% of EBV from the B-cell compartment and 11.3 years to eliminate the virus completely from the body if persons were not reinfected during this time. Reinfection with the virus is likely, however, since multiple strains of EBV are detected in many individuals, suggesting that multiple episodes of infection occur (22). The mean peak concentration of acyclovir reaches 27.1 μM when valacyclovir is given at 1,000 mg three times a day (16), while the 50% effective inhibitory dose of acyclovir for EBV replication is 5 to 10 μM (7, 21, 24). Therefore, it might be theoretically possible to eradicate EBV from the body within several years with high-dose valacyclovir."

Just incase anyone is interested, I take only 500mg daily.
 
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Gingergrrl

Senior Member
Messages
16,171
I wonder if it was indeed EBV that I got in 1979 and whether my experiences fit the picture outlined above.

I think it is certainly possible but one of those things that we will never know for sure. Within a year of having severe (confirmed) Mono from EBV, I developed a second viral infection which may have been a re-activation of EBV or a different virus and I will never know. But within several months of that, I was diagnosed with both POTS and Hashimoto's Disease and I am sure it is all related.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
I think it is certainly possible but one of those things that we will never know for sure. Within a year of having severe (confirmed) Mono from EBV, I developed a second viral infection which may have been a re-activation of EBV or a different virus and I will never know. But within several months of that, I was diagnosed with both POTS and Hashimoto's Disease and I am sure it is all related.
Chronic infections as facilitators are something many are looking at. Sarah Myhill explains in plain english
http://drmyhill.co.uk/wiki/Chronic_infections_in_CFS
 

Gingergrrl

Senior Member
Messages
16,171
Chronic infections as facilitators are something many are looking at. Sarah Myhill explains in plain english
http://drmyhill.co.uk/wiki/Chronic_infections_in_CFS

Thanks @anni66 and I will look at this later. I still believe that chronic viral infections can lead to autoimmunity (in some cases) b/c the body keeps trying to attack a virus that is long gone and eventually starts attacking itself. I haven't read the link yet and am not sure if this matches with Dr. Myhill's theories?