Epstein-Barr Virus: a prime henchman with C.Pn. in MS and CFS

This abstract caught my eye, given the second-hand knowledge of MSi I have picked up here: Dysregulated Epstein-Barr virus infection in the multiple sclerosis brain<

It is also known that elevated EBVi titres are common in CFIDSi -- so common, in fact, that during the early outbreaks around Incline Village, it was called "Chronic Epstein-Barr" for a while.

  This just struck me as very significant intellectually, but also personally, since it seems likely that there is some problem in my family with the way we handle EBV

  • my grandson and a nephew both had mononucleosis twice, which isn't supposed to happen,
  • my granddaughter has several neurological problems resulting from her bout of mononucleosis (we're waiting to see how much she regains over time; it just happened)
  • my daughter has elevated EBV, along with some unexplained neurological symptoms
  • I have elevated EBV, along with my CFIDSi and some degree of dysautonomia.

I think it's well-established that there is a connection between MS and CPni, so what's the deal with EBV, then? Will all of us with CNSi-related CPn diseasesi need to do a course of Valgancyclovir to clear the EBV, or will our bodies regain the upper hand once the CPn is eliminated? Do any of you long-term CAPi veterans have before/after EBV titres you could check?

Ron 

Hi Ron,

You may have already read this, but since some of the newbies may not have, DW discusses the "Henchman" viruses and their role as co-pathogens with Cpni on his website:

Human Herpes Virus 6, Epstein-Barr Virus and Endogenous Retroviruses: an input into Multiple Sclerosis?
<

Thought you might be interested in reading this study that suggests Vit D status may be important in preventing many of the ill-effects of EBVi infection:

Vitamin D status modulates the immune response to Epstein Barr virus: Synergistic effect of risk factors in multiple sclerosis.<

BTW, my brother had a double bout of Mono @ 30 years ago, that also surprised his doctors then too. Mono can also be caused bycytomegalovirus (CMV), which my brother has tested positive for:

MedlinePlus: Mononucleosis <

I've posted this before, but there are studies suggesting Vit D3 (and the Vit D3 associated upregulated cathelicidins) have antiviral activity towards CMV and other Herpes Family viruses and that Leukotriene B4 (LTB4) is very important for this activity:

Leukotriene B4-mediated release of antimicrobial peptides against cytomegalovirus is BLT1 dependent.<

Given this and several other studies suggesting the same link further discussed in this cpnhelp thread<, it really might make sense for someone testing positive for these and other Herpes family viruses to discuss getting plenty of Vit D3 and avoid taking 5-lipoxygenase inhibiting drugs and herbals with their doctors...

Hope this helps...

On Combined Antibiotic Protocol for Cpn in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I am most interested in these topics, but cannot really study them right now ... been at a Pantomine (Cinderella) in London (Old Vic Theatre) this afternoon and so exhausted (though it was brilliant!) ... but i hope i will return to the subjects you have highlighted at some point, as they may be important to me.  Even though i have read about 'henchmen' a little, it is not something i still really can get my head round ....

Though I am doing CAPi to the letter since October, at some point later on i will have to attend to these subjects.  20 years ago i was originally diagnosed Epstein Barr (may check it out again at some point).  I also had thyroid cancer 10 years ago - which I believe was possibly HHV6 virus.  I always believed there was a connection, though i had no proof and had read nothing on the subject until (accidentally) 6 months ago - and it was upsetting at the time.  There is this link apparently between HHV6 thyroid cancer and "ME" (though it is still rare).  So the relationship between such viruses and CPNi is of special interest to me.

But for now, I can only do it piece at a time, as Johnny Cash once said, building his lovely car that didn't cost him a dime   .....

Adios,

Blackfoot

England.

M.E./CFSi 20 years.  Wheldon Protocol - Started NACi and supplementsi Sept 2007, Doxyi daily 100mcg October 2007, Azithromycin Nov 2007.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.
Blackfoot, Not to stray too far from the topic here, but you ARE doing what you can for yourself right now. Knocking down this one big infection might even be all that your system can handle right now. One thing at a time is fine; it will better prepare your body for any other battles you may have ahead of you. Then again, your body may be able to take over a lot of the fight once you rid it of the burden of cpni. Time will tell.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

 Blackfoot- ditto to Mac's comment. Cpni is also linked to thyroid cancer, and killing the Cpn is likely to bring your immunei system back up to fight any HHV or EBVi, so it's a good one to go after first. You may want to look into the use of iodine supplementation (eg Iodoral) for it's anti-cancer, especially breast and thyroid cancer, affect. 

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

oh i didn't know about further links - it is really quite awesome what is not known ..........and also known, but not readily 'available knowledge' (even to experts, i know i mentioned the link to my specialist thyroid doctor in London and he had no idea what i was talking about ..........).  Anyway, i am fairly happy ATM pottering along on all my abxi, except Flagyli.  Thanks, Blackfoot.

M.E./CFSi 20 years.  Wheldon Protocol - Started NACi and supplementsi Sept 2007, Doxyi daily 100mcg October 2007, Azithromycin Nov 2007 (changed to Roxyi Dec 2007)

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.
Here's a new article from Mexico implicating the chicken pox (varicella-zoster) virus:
DNA from VZV was found in 95% of MSi patients during relapse and in 17% during remission; all controls were negative; by contrast, DNA from HHV6 was found in 24% of MS patients during relapse and in 2% during remission; DNA from herpes simplex viruses was not found in any subject; and DNA from EBVi was found in a similar percentage of subjects from all groups.
(That's a quote from the abstract of this article<.)

Norman -

Interesting article.  Thanks for posting.

95% of MSi patients during relapse are PCRi positive for VZV and all non MS patients negative.  Wow -   I know about viral henchman with CPNi per David Wheldoni's website but this is a very statistically significant difference between the three groups.  The numbers of study participants was also pretty robust for a study of this type.

What is the most logical theory behind why you would be PCR positive for the VZV virus during a MS relapse and not during remission?  Also - it seems highly unlikely that all general population controls would be negative.  You would think that at least a couple of them would be positive?

 

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9-1, Azi 375QD  Roxyi 300 BIDi 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Novantrone, Rescue Prednisone

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Ok, so now the list (for MSi) is all of: EBVi, CPni, VZV, HHV6, and HERVs? Not "one of"; it seems that for most of these organisms, they're all found in virtually all MS patients' CNSi.

That's just wierd. 

 Let me ask again -- has anyone measured before-CAPi/after-CAP titres for EBV?

 

Ron

On CAP for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Yes, very interesting! In fact, I posted this same abstract back in Sept. when I came down with Shingles, after my first (and only) pulse:  Shingles<

Just can't understand why it hit me (and Wiggy) after CAPi, not before.

 

--Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Hi Ron,

Pre-capi EBVi for me, well above positive. This is what led to Sarah approaching me about considering CAP. Haven't had it tested, since.

 

But, since I see HHV6 on your list, I think I should mention that I have been tested repeatedly for it (both pre and post CAP) and have never tested positive for it, ever.

 

--Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

 

 

Minai, I think it was Jim who offered an explanation for the fact that viral infectionsi flared at the beginning of the CAPi. He suggested that because of the immunei system cells were infected with Cpni, manyof them would die at the beginning of the protocol resulting in a compromised immune system which would allow dormant viruses to have the run of your body.

Michele (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Oh, gosh, Michele...and, Jim's probably right! Had been putting off pulses to recover from Shingles. Just hope it doesn't return when I start them again, soonSurprised

 

--Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

 

 

One of my daughters just blogged about this study: Combination Therapy With Interferon Beta-1a and Doxycycline in Multiple Sclerosis<

 Perhaps (just speculating) the Interferon knocked back the viruses and helped bridge the gap in immunei function. Adverse effects were "mild" -- but, of course, they might not see shingles or other non-MSi effects as being a result of the treatment, either. 

Intriguing, at any rate. 

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxy & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Hi Ron, my early CAPi EBVi titers read as such;

Epstein Barr Virus Panel

  EBV Capsid Ab IgG  Positive  Strength of signal 4.33 High

        Reference Range: <=0.90 Negative  

                                     0.91 - 1.09 Equivocal

                                     >+1.10 Positive

 EBNA Ab, IgG  Positive  Strength of signal 2.57 High  

 

   EBV Cabsid Ab IgM  Negative   Strength of signal  0.30 

        Reference Range: <=0.90   Negative

 

EBV Interpertations  + / + / -/  Report comment 

Suggestive of past Epstein-Bar Virus Infecton.  In Infants, a similar pattern may occur as a result of a passive maternal transfer of antibody.

Thes Titer results were  drawn 3+ weeks into high dose Doxyi 400mg/day dosage. 

No pre-abxi titer drawn and no titer drawn through my now 7th month of CAP Doxy 200mg/Roxi 300/Tinii 5Gm second pulse.  

 Louise    

    CFSi/ME. CPni posititve, Bb positive. Started CAP 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Louise and Minai -- thanks for posting! I'll be interested to see what they look like after you've CAPped out.

 I just can't let go of those numbers -- 98% CPni, 98% EBVi, and 95% VZV (during a relapse.) It's a mathematical certainty that nearly all MSi patients have all three during a relapse. Their immunei systems might be "overactive," but they are without any doubt incompetent.

Those organisms are nearly ubiquitous in the general population, but  they don't have any detectable effect in most people. Immune suppressants can only be a scientific dead end as a treatment for MS. The cure will have to be oriented toward restoring immune competence (don't ask me how!)

We all hope that eliminating the CPn will restore the immune system's competence. It would be nice to see some research results to bolster our impressions.

 Ron

P.S. Apologies for posting the interferon/doxyi study for the THIRD time! I just didn't keep up on the discussion -- again, I apologize.

 

On CAP for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxy & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

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