Ultimate outcome, expectation VS reality!

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Scott1
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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 »

Hi,

This is the most recent large scale study on EBV and MS. They had to use three different methods to be sure. What it showed, apart from 100% EBV infection in MS, is not every test gives the result that shows infection but an alternative valid test will.

https://jnnp.bmj.com/content/jnnp/91/7/681.full.pdf

This is the study that made people look at EBV.
https://www.researchgate.net/publicatio ... _Sclerosis

Regards,
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Re: Ultimate outcome, expectation VS reality!

Post by DIM »

Scott1 wrote: Wed Feb 24, 2021 1:54 pm Hi,

This is the most recent large scale study on EBV and MS. They had to use three different methods to be sure. What it showed, apart from 100% EBV infection in MS, is not every test gives the result that shows infection but an alternative valid test will.

https://jnnp.bmj.com/content/jnnp/91/7/681.full.pdf

This is the study that made people look at EBV.
https://www.researchgate.net/publicatio ... _Sclerosis

Regards,
Ha ha there is no need to convince me Scott, as I told you the early infection in my wife was the fire that started her MS, my only concern is how to convince her neurologist, I'd like to have his support on this, and her to start valacyclovir!
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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 »

Hi,

On page 363 of the Pender article there is a section called treatment. He talks about acyclovir at the point. My own experience is it works providing you keep going. As he points out it will only work in the lytic cycle but I think that is enough to do the trick. His other proposal to try Rituxumab is far more aggressive and has side effects.
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Re: Ultimate outcome, expectation VS reality!

Post by DIM »

This is a very good article about EBV including treatment with vitamins, supplements and natural extracts.
Interesting that except Artesunate which is synthetic Artemisin extract analog (with antimalarian and anticancer properties) all other mentioned supplements, are recognized and helpful in MS.
https://jcp.bmj.com/content/72/10/651.full
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Scott1
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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 »

Hi,

Yes, it is a good article. Unfortunately, not everyone will be able to get past the firewalls.
In table 1, only acyclovir can cause chain termination. That is what you want. Everything else is disruptive but doesn't stop the virus replicating. It is very difficult to catch it at the point of replication. You would have to go through each study to see how long it was and what was really achieved. The valaciclovir seems to produce the least side effects of that list.
The article talks about the virus shedding many different things. That includes microRNA and I suspect (my view) that is where researchers will one day focus their attention. In particular EBER2 which can muck up purine degradation.
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Re: Ultimate outcome, expectation VS reality!

Post by NHE »

Atara Biotherapeutics is developing anti-EBV treatments for MS as well as cancer.

viewtopic.php?p=260405#p260405
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Re: Ultimate outcome, expectation VS reality!

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Thanks NHE, interesting that is the only drug which reduces disability in PPMS/SPMS, all DMTs reduce severity or symptoms or both but they don't stop disability except probably the Anti Lingo / DITPA that increase remyelination.

May I ask those that take Valacyclovir, why 2X500mg caps per day, it seems quite high quantity for long term use although I know it is effective for max 12 hours.
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Re: Ultimate outcome, expectation VS reality!

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Hi,

I don't think it is a high dose. Remember the original use, when Valtrex was the only offering, was for genital herpes. It was then prescribed as a high dose, short course. i.e up to 6x500g per day. These days, they have brought the dosing back a little.
The issue is none of the studies are focused on EBV. Instead they are aimed at other herpes viruses where the problem is an obvious blistering on the skin which indicates the patient is infectious. The FDA notes indicate it cannot cure the infection, just suppress it. The half life is not long, just 2.5 to 3.3 hours. There is no evidence that it will work on a virus that is in the latent cycle. It only works on the lytic cycle (i.e when many copies of the virus are exploding out of a host cell).
Under point 7 of the FDA note, there are no significant drug interactions but you should read the notes from line 476 as that covers the only areas where you may feel a bit wobbly.
Line 411 says "There is no accumulation of acyclovir after the administration of valacyclovir at the recommended dosage regimens in adults with normal renal function".
In essence, it is a highly specific drug with a short half life and, assuming no renal problems, is quickly cleared from the system. Using it for EBV you are targeting an elusive, persistent infection that only sometimes replicates in a way that can be attacked.
https://www.accessdata.fda.gov/drugsatf ... 014lbl.pdf

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Re: Ultimate outcome, expectation VS reality!

Post by NHE »

DIM wrote: Mon Mar 01, 2021 3:04 pm Thanks NHE, interesting that is the only drug which reduces disability in PPMS/SPMS, all DMTs reduce severity or symptoms or both but they don't stop disability except probably the Anti Lingo / DITPA that increase remyelination.
It's not a drug, it's a T-cell therapy. See pages 9 and 21 in the following presentation.

https://d1io3yog0oux5.cloudfront.net/_5 ... inal-1.pdf

Perhaps we should lobby Moderna or BioNTech to make an mRNA vaccine against EBV for PwMS. It should be just a matter of lab work to make a vaccine with mRNA transcripts of proteins from both phases of EBV.
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Re: Ultimate outcome, expectation VS reality!

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Wife's EBV blood tests revealed that the virus was recently activated (acute or past) although she had no symptoms, so there is connection for sure with MS:
negative IgM VCA, Positive IgG VCA, negative IgG EBNA
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Re: Ultimate outcome, expectation VS reality!

Post by jimmylegs »

hi DIM i did well for over a decade after a single diagnostic episode in 2006. dropped the ball in the work life balance deparment between about 2015 and 2018. self care suffered. in the same period, my doctor retired and it was tough to get monitoring back on track. when i finally got some numbers, they were bad.
wheels came off in 2018 and i would say i have had three episodes that would count as relapses since - one in early 2018, another in late 2019 (both of those with internuclear ophthalmoplegia) and a third in mid 2020 (harsh left sided weakness).
since 2018 i've done a lot of work to get things back on track in the diet and supplement department, have worked harder to get testing done under the new doc's supervision.
there's a lot more daily physio in the mix than ever before. i am definitely not back to what you'd call my 2015 level of normal.
for the first time, in the last year i've gotten an actual pharma prescription (short term, one off), am considering other pharma options for next steps (not enthusiastic, just pragmatic), and am doing more research to align the supplement regimen to the candidate pharma product's mechanism of action.
cranial mri in 2 weeks, so we'll see what kind of disease activity might be going on right now. and in the past week, i think i have finally spotted the work-around for future nutrient testing requisitions with my doc. the learning curve continues!
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Re: Ultimate outcome, expectation VS reality!

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Difficult situations Jimmy, hope you'll doing better soon and your new pharma prescription gives you the results you expect!
I am really frustrated with wife's situation, one day she walks almost normally 500-600 meters and the other feels unexpected fatigue, more than that of her first relapses and is unable to walk short distances.
I give her many supplements that I am not sure they work as anti-inflammatory or the opposite, I've read the more is not always better but I don't know what to cut of her regimen, they are all critical!
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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 »

Hi,

Maybe you could list all the supplements. I use a few but not a ridiculous amount.
Regards,
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Re: Ultimate outcome, expectation VS reality!

Post by DIM »

Vitamins-minerals:
A (2000IU), B complex (in the most absorbable forms), C 500mg, D3 (2500IU)+K2, Tocotrienol complex+E,
Selenium 200mcg, Chromium 300mcg, Zinc, 50mg, Iron 2 times per week, Kelp (Iodium), Calcium 400mg, Magnesium 200mg, Boron

DHA-EPA 3X950mg, NAC 2X500mg, ALC 2X900mg, R-ALA 3X600mg, CoQ10 2X100mg, Inosine 3X500mg, Ginkgo Biloba phytosome X2, Curcumin phytosome (and/or Longvida) X2, EGCG X2, Pycnogenol, Quercetin phytosome X2, Luteolin X2, Phosphatydilserine X3, Fisetin X2, Milk Thistle phytosome X2, Resveratrol, Acidophilus (multiple strains), Lauricidin 1 scoop
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Re: Ultimate outcome, expectation VS reality!

Post by vesta »

DIM wrote: Sat Mar 06, 2021 4:38 am Difficult situations Jimmy, hope you'll doing better soon and your new pharma prescription gives you the results you expect!
I am really frustrated with wife's situation, one day she walks almost normally 500-600 meters and the other feels unexpected fatigue, more than that of her first relapses and is unable to walk short distances.
I give her many supplements that I am not sure they work as anti-inflammatory or the opposite, I've read the more is not always better but I don't know what to cut of her regimen, they are all critical!
Greetings:
Since 95% of the population has EBV, I don't see how this should be specific to MS. I can see no one here recognizes the blood/CSF fluid circulation problem in MS. Maybe one should consider COVID 19 which begins as a respiratory illness to finish as an endothelial disease if untreated which may lead to blood circulation/vascularproblems in future.
Myself, at age 9 I suffered the Asian flu (H2N2?) November 1957 followed by Mono spring 1958 (polio vaccine january 1958) Maybe these illnesses DID damage the vascular system leading to future MS. However, CSF circulation problems may originate in skeletal injury. I'm thinking of a former construction worker (back injury?) who couldn't walk back to his house after going out to the mailbox. That's not an EBV problem, it's pressure on the spinal cord/fluid.
As MS progresses and the skeletal.muscular system is disorganized, attention should be directed to keeping the CSF freely flowing.Complicated problem.

Best regards
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