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

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

It is also known that elevated EBV titres are common in CFIDS -- 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 CFIDS and some degree of dysautonomia.

I think it's well-established that there is a connection between MS and CPn, so what's the deal with EBV, then? Will all of us with CNS-related CPn diseases 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 CAP veterans have before/after EBV titres you could check?

Ron 

Red

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 Cpn 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 EBV 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 Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  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 CAP 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 CPN 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./CFS 20 years.  Wheldon Protocol - Started NAC and supplements Sept 2007, Doxy daily 100mcg October 2007, Azithromycin Nov 2007.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP 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 cpn. 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. Cpn is also linked to thyroid cancer, and killing the Cpn is likely to bring your immune system back up to fight any HHV or EBV, 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. 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini 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 abx, except Flagyl.  Thanks, Blackfoot.

M.E./CFS 20 years.  Wheldon Protocol - Started NAC and supplements Sept 2007, Doxy daily 100mcg October 2007, Azithromycin Nov 2007 (changed to Roxy Dec 2007)

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP 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 MS 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 EBV 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 MS patients during relapse are PCR positive for VZV and all non MS patients negative.  Wow -   I know about viral henchman with CPN per David Wheldon'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.  CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9-1, Azi 375QD  Roxy 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Novantrone, Rescue Prednisone

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

Daisy on her own CAP 11/2012. 

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 CAP, not before.

 

--Minai

 

RRMS, diagnosed 2/04. NAC 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. LDN 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

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

That's just wierd. 

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

 

Ron

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

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

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

Began rifampin trial 1/14/09

Currently: on intermittent

Hi Ron,

Pre-cap EBV 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

 

RRMS, diagnosed 2/04. NAC 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. LDN 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 infections flared at the beginning of the CAP. He suggested that because of the immune system cells were infected with Cpn, 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) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro 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, soonImage removed.

 

--Minai

 

RRMS, diagnosed 2/04. NAC 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. LDN 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 immune function. Adverse effects were "mild" -- but, of course, they might not see shingles or other non-MS effects as being a result of the treatment, either. 

Intriguing, at any rate. 

Ron

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

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

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

Began rifampin trial 1/14/09

Currently: on intermittent

Hi Ron, my early CAP EBV 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 Doxy 400mg/day dosage. 

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

 Louise    

    CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 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 Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 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% CPn, 98% EBV, and 95% VZV (during a relapse.) It's a mathematical certainty that nearly all MS patients have all three during a relapse. Their immune 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/doxy study for the THIRD time! I just didn't keep up on the discussion -- again, I apologize.

 

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

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

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

Began rifampin trial 1/14/09

Currently: on intermittent