Ultimate outcome, expectation VS reality!

[DIM]

But only people with MS 100% have EBV antigen in their CSF compared with controls:
https://jnnp.bmj.com/content/jnnp/91/7/681.full.pdf
I didn't mention the connection between EBV and vascular problems it may causes but it exists as with Covid and other viruses.
On the other hand CCSVI is not common in all MS patients and after some of them have corrected their narrowing neck veins with surgery very few have seen improvements in their MS.

[NHE]

But only people with MS 100% have EBV antigen in their CSF compared with controls:
https://jnnp.bmj.com/content/jnnp/91/7/681.full.pdf
I didn't mention the connection between EBV and vascular problems it may causes but it exists as with Covid and other viruses.

I may have missed it, but where do the authors of that paper state that EBV antigen is in the CSF?

[DIM]

You are right in this study they mention generally about EBV antigen prevalence in MS patients but I've read many clinical trials with references to the EBV in CSF

[NHE]

Well, they write that 100% of the MS patients were seropositive meaning that the EBV antigen was in their blood. I think that the author's conclusion was that if a patient is facing a diagnosis with MS, but tests negative for EBV, then the MS diagnosis may be in error and should be reconsidered.

[DIM]

We just returned from a health center, the endocrinologist found her Hasimoto stable, but he found also slightly swollen her neck lymph nodes "probably due to recent infection or pathogen or unknown reason" which leads me more to believe there is a connection between her last relapse and EBV reactivation or/and covid infection, she must have a covid-19 antigen test soon just to be sure!
Her azygous and jugular veins are perfect with no stenosis which in our case removes any possibility for CCSVI.
So far so good

[vesta]

We just returned from a health center, the endocrinologist found her Hasimoto stable, but he found also slightly swollen her neck lymph nodes "probably due to recent infection or pathogen or unknown reason" which leads me more to believe there is a connection between her last relapse and EBV reactivation or/and covid infection, she must have a covid-19 antigen test soon just to be sure!
Her azygous and jugular veins are perfect with no stenosis which in our case removes any possibility for CCSVI.
So far so good

Greetings:

The CCSVI issue is more complex than the issue of stenosed veins, and should include CNS fluid circulation in general, blood and CSF. Consider the following quotes from my site mscureenigmas.net. https://www.mscureenigmas.net/

Best regards, Vesta

My next « Eureka » moment came thanks to Mark Miller, another Stanford stent recipient. (See Dr. Owiesy’s « Superior CCSVI Solution », Feb 12, 2017) His family MD Dr. Owiesy of Southern California has observed that when the middle layer of the vein composed of smooth muscle tenses up or goes into spasms, blood flow is obstructed. Again the problem resides “exterior” to the vein, not “interior”. The veins may be weak or somehow defective, but the mechanism which shuts off the blood flow isn’t “intima”. This corresponds to my experience. The treatment? Dr. Owiesy, specialist in migraines, administers a mixture of dexamethasone/lidocaine/thiamine (used to treatTrigeminal Neuralgia) in the area around the Internal Jugular Vein. Stress alone - emotional, psychological, toxins, cold, the flu -may trigger a physical response which obstructs blood flow.

Here is suggested one of the many benefits of the MS diet. For example non-inflammatory diet/supplements alone may prevent the release of cellular calcium which is known to trigger muscular spasms and, to Dr. Owiesy’s thinking, constricted veins. Dysfunction of the autonomic nervous system which runs through the spine may follow. It is this system which controls the urinary and bowel functions whose dysfunction marks MS Progression.

Another benefit of the MS Diet. If too much cholesterol accumulates in the cell, cholesterol can form destructive needle-shaped crystals. To eliminate these crystals, the MS Diet promotes high levels of the « good » HDL cholesterol which contains the transport protein ApoA1. Eating well will cleanse the vascular system to let the blood circulate freely. (See February 23, 2020 post « Re-thinking Veins and CCSVI-MS »)

My final « Eureka » moment ? « Violin », a correspondant who came to my site through Thisisms.com has provided critical information which completes my understanding of the Vascular Connection to MS. Treated for Lyme disease which mimics MS symptoms (but which can be treated with antibiotics), venoplasty was recommended to her as necessary to clear out veins caused by chronic Lyme disease. Her first venoplasty helped her enormously, a second was recommended. She was also told that infections in the head located above the jugulars tend to obstruct venous blood flow through them. She had suffered many such infections, ear, teeth, Lyme. So here is suggested that infections alone can damage, obstruct and « clog up » venous blood flow – for example EBV Mononucleosis or Chlamydia pneumoniae. Other potentially « clogging » factors include an unhealthy diet and Birth Control Pills.

[DIM]

So serrapeptase may help by cleaning the veins right?

[Scott1]

Hi DIM,

If you went into crash repairers shop and every car was red, would you assume all dents in the cars are caused by the color of the car? Logically you wouldn't and decide a range of issues may have been involved. Fixing every dent won't stop new dents appearing if the underlying problems behind the first dent were allowed to be repeated. I think you are trying too hard to find the fundamental cause. Keep it simple and try one thing at a time. If you do everything together, you wont be able to work out what works and what doesn't. More importantly, you won't be able to recognize when a contraindication arises. You're trying to be methodical. Don't stray from that.
Regards,

[vesta]

Hi DIM,

If you went into crash repairers shop and every car was red, would you assume all dents in the cars are caused by the color of the car? Logically you wouldn't and decide a range of issues may have been involved. Fixing every dent won't stop new dents appearing if the underlying problems behind the first dent were allowed to be repeated. I think you are trying too hard to find the fundamental cause. Keep it simple and try one thing at a time. If you do everything together, you wont be able to work out what works and what doesn't. More importantly, you won't be able to recognize when a contraindication arises. You're trying to be methodical. Don't stray from that.
Regards,

Excellent advice.

[Leonard]

A renowned virologist told me that we see virtually zero cases of MS in EBV seronegative people. He argues that, if you consider that still some 5-10% of the world population is seronegative for EBV, this is a very very very strong indication that EBV is involved in MS.

EBV is known as an onco virus. It is also causal for many types of cancers. Some attribute over 90% of all cancers in the world to EBV. Autoimmune disease then, like MS, is a form of hyper-immunization. This latter form of immunization including the epitope spreading possibly helps to counter the growth of cancers. Epidemiological statistics would seem to confirm such line of thinking.

Besides EBV, there are other herpes strains that may be involved in MS and that is Zoster (the Varicella-Zoster virus or VZV) and the herpes simplex virus. Zoster is an inflammatory virus. But Zoster is also well known for its role in vasculopathy, which may cause vascular insufficiencies and even oedema. See chapter 2 of the document on Theoretical Immunology and Chronic Disease on viewtopic.php?f=1&t=15188&start=900#p260052

I believe that MS is then caused by a combination of EBV that transactivates HERV possibly with a stimulus from Zoster and/or simplex antigens.

If the herpes spreading occurs in the head, this will normally start in the oro- and nasopharynx. The herpes virus spreads in the head, giving the swollen lymphe nodes, agitated skin, stiff muscles etc. Via the Virchow Robin space, it will spread into the CNS. That may be at the same time sharply raising Zoster and EBV, with quite different implications. See also Annex I of the document on Theoretical Immunology and Chronic Disease.

As shown in the presentation by Atara Bio to ECTRIMS (in above posting), “the defective elimination of EBV infected B cells by cytotoxic CD8+ T cells results in the accumulation of EBV infected autoreactive B cells in lymphoid structures and within the CNS”. I do not exclude that ATA188 could indeed transform MS treatment. The company clearly sees a big multibillion dollar market ahead of them, as indicated in the same presentation.

Another option to deplete the immortalized EBV B cells would be to reset the T/B cell immune system by HSCT (and a lot under it). Some doctors give repeated light cycles of cyclophosphamide (you don’t lose your hair) to achieve the same thing and seem at least partially successful.

In my perhaps limited view, long term use of Valacyclovir could do the trick as well. Literature talks about a half life time of immortalized EBV B cells of 11 months.

It's my two cents for what it's worth..

[DIM]

Thanks all for your help, especially Scott and Leonard!
Seeking personal experiences from long term use of Valacyclovir, mostly side effects.

[Scott1]

Hi Dim,

I have used it for around twenty years now. No side effects that I can think of. There is always a risk when starting something new that an unexpected contraindication arises but I can't think of one. Also, a risk that a herximer response is possible as part of the reaction of the virus when it is attacked. Again, I didn't experience anything.
Your wife is taking a lot of different supplements. Probably they are harmless but I would just take the Valacyclovir on its own for a few days and then reintroduce things slowly so can see if any contraindication arises. Just adding Valacyclovir to your current list would make it impossible to work out if there is a contraindication.
Regards,

[DIM]

Thanks Scott, I am going to start her Valacyclovir with 500mg divided in two doses, then 750mg (500+250) and finally 2x500mg if there are no adverse reactions.

From my limited search I found no contraindications between her supplements and Valacyclovir, but who knows, I don't want to live her even one day without some critical supplements!

What is more difficult is to convince her doctor (she agreed to try it) or find a good virologist to prescribe it and follow her at least during the first few months.

That's why I am more than cautious before she start it.

[Scott1]

Hi Dim,
I hope it goes well. She is taking more supplements than I do.
Your doctor probably doesn't know the mechanism of action of valacyclovir so will be wary. Normally it is used in short doses or in ointments for cold sores so long term low dose use will be foreign to him.
I will be interested to hear how it goes.
Regards,

[DIM]

Doctor refuses to prescribe her Valacyclovir as in some previous cases he experienced worsening of neurological symptoms, he says it is very strong antiviral and should be used with extra caution.
Although he agrees with natural herpes virus treatments (!!!) which is really interesting, most doctors want to prescribe DMDs as they take their profits!
Thus, except her current supplements we added Olive leaf extract which has anti-herpes properties (and stop her ALA cause she has dental amalgam fillings).
Artemisinin and Berberine are strong too but not for long term use due to possible side effects.