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
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Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Currently: doxyii & zithii -- continuous; metronidazoleii -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access

Hi Ron, You may have already
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
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
I am most interested in
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.
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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.
Blackfoot, Not to stray too
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
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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
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. Dx: 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
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
oh i didn't know about
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)
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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.
Here's a new article from
Norman - Interesting
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 BID 9-1,Azi 375QDRoxyi 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3,Novantrone, Rescue Prednisone___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Ok, so now the list (for
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)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access
Yes, very interesting! In
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. USAHi Ron, Pre-capi EBVi for
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. USAMinai, I think it was Jim
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
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Michèle (UK) GFAi: Wheldon CAPi 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
Oh, gosh, Michele...and,
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, soon
--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. USAOne of my daughters just
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)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access
Hi Ron, my early CAPi EBVi
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.
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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3TID[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}
Louise and Minai -- thanks
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)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access