Cpnhelp.org

Panc, is EBV the main cause of multiple sclerosis? I somehow doubt it, because to start with, I did once have very progressive MS but I have never had glandular fever which IS caused by Epstein-Barr virus.

i am by no means the only person here whose MS has been cured by taking the CPN antibiotics.

Sarah

There's nothing that says MS has to be an infection by just one agent.  EBV was already on David Wheldon's list of possible "henchman viruses":

https://www.davidwheldon.co.uk/hhv6.html

This new study doesn't proclaim EBV to be the entirety of the disease; it still speaks in terms of an autoimmune disease triggered by EBV... which we can propose is a coinfection rather than autoimmunity.

The study sounds incredibly strong at first glance (data from ten million people, and an odds ratio of 30), but looking at the details, it's -- well, still good work, and still highly suggestive of EBV being necessary for MS, but not quite as strong as would first appear.  An odds ratio of 30 means thirty times more risk of MS if you're exposed to EBV.  That high a ratio is normally the end of the discussion: no further proof needed.  In this case, though, the 95% confidence interval for that number is calculated by the authors as being from 4.3 to 245.  So it's 30 -- but given random chance, it might only be 4.  (Which would still be a strong result.)  Or it might be as much as 300.

The problem is that that base population of over ten million people got whittled down a whole lot during the study.  Of those people, only about a thousand got MS.  (None of them had it to start with: the study population was US military, and MS is a disqualification for military service.)  Of the thousand who got MS, only 35 didn't have EBV at the time of their first blood sample.  EBV is incredibly common: about 95% of adults have it.  It's usually just acquired as a childhood cold which people take no more notice of than any other cold -- but it silently persists in the body.  And of those 35 people, only one didn't get EBV before being diagnosed with MS.  This is why the confidence interval on the odds ratio is so large: it could easily have been two people instead of one, just by chance.  Or it could have been zero people.

Among the controls (this was a case-control study, where for each MS victim they chose two people of the same age, sex, etc. to serve as controls), about half got EBV during that same time period: so a very big difference between cases and controls.

The study really addresses causality: it's not just "EBV is correlated with MS", where someone could say "I think the causality is in the other direction: MS makes you vulnerable to EBV".  They were measuring EBV titers from before people got MS, using stored blood serum samples.  So not having EBV predicts not getting MS.

This is not the same as saying that having EBV predicts getting MS: the vast majority of people have EBV and don't have MS, so there must be something more to the disease: autoimmunity, or coinfection, or whatever.

(Another difficulty they had in the study was false negatives for EBV.  A test with an error rate of 1% is normally good enough for biomedical work, but when only 5% of your population lacks the disease, a 1% false negative rate makes that 6%, so a sixth of your supposed negatives are false ones.  These numbers are in fact very close to the ones they report: their initial test was ELISA, and they chose to not accept an ELISA result as negative unless it was confirmed negative by Western blot, and that confirmation stage reduced the number of "negatives" from 124 to 107.  I don't see anything that really excites my suspicion about how they did this stage, but it is the kind of place where one could put one's thumb on the scale a bit.  I would not guess that they did, but one never knows.)

Unfortunately if you have the type of multiple sclerosis that was triggered by an attack of EBV and not Cpn, then I am afraid that you ae very unlikely to show much improvement with taking Cpn antibiotics.

I remember when young that many friends would from time to time go down with glandular fever.  A few months later a few might go on to develop relapsing remitting MS. My first MS attack came on at the grand old age of 28 when my right arm became useless for the first time.  Still no glandular fever so probably a Cpn attack.  I wonder if in the future covid might also be found to trigger a first MS attack.

This study found years of lag between first getting EBV and the onset of MS.  That's part of the point of this sort of thing: picking up associations that are too delayed for people to ordinarily notice.

But really, this research does not at all conflict with blaming Cpn or taking antibiotics.  Even if both Cpn and EBV were absolutely required to have MS, as in it had to be a coinfection, both germs are so common that there also has to be some other factor involved.  EBV: 95% of adults infected; Cpn: maybe 50%; multiply the two together and one gets 47.5%.  But it's not the case that 47.5% of adults have MS.  One could quite reasonably look for a third, a fourth, or a fifth necessary germ too.  (Or one could blame "host factors").

EBV, by the way, is also likely to blame for a lot of cancers.  Indeed, it was first discovered as an isolate from a case of Burkitt's lymphoma.  Unfortunately there isn't a good treatment for it: there are some antivirals which maybe work a bit but not really well.  (Antivirals aren't like antibiotics, which commonly are wide-spectrum; they tend to be specific to one virus or one class of viruses.)  People speak of getting a vaccine for EBV, but vaccines tend to be quite hard to develop for germs that normally successfully persist despite immunity.  It's not impossible, as the HPV vaccine shows, but it's tough; we still don't have a good vaccine for tuberculosis, despite having been trying ever since Koch discovered the germ.  So in terms of what one can actually try today if one has MS, antibiotics are mostly it, though one could also try valacyclovir.

Exactly Norman. From my experience I would firstly suggest trying what I took, which is doxycycline, roxithromycin and then pulses of metronidazole. This worked perfectly for me. However for people who don't seem to be having much success with this, they might try valacyclovir, especially if they remember having suffered from glandular fever as a chid.

Sarah