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Aug 8, 2022Liked by Gavin Giovannoni

We had this with my son. My ex was an alternative health practitioner - but in Traditional Chinese Medicine (pins and herbs) and in TCM despite what everyone thinks, they really like their data and numbers. I work in IT but have previously worked in pharmacovigilance (drug safety). My ex was very concerned about the childhood vaccinations and possible risks from the vaccines. I wasn't yet on immune-suppression therapies but nonetheless wanted my kid to be vaccinated. So we "did our own research".

I showed her how to calculate the relative risks and relative benefits, where to find the relevant SPCs and trial data and we did massive spreadsheets working on risks. The numbers are pretty stark, I'll be honest. We didn't just look at "deaths" because just as important (or maybe even more important) are the life-long consequences. Autism lasts your whole life, as does brain damage, deafness etc.

We looked closely at the risk of permanent deafness / permanent brain damage from measles and the rest (but mainly measles, the others are milder) - and it was pretty obvious to her that our son should get his vaccinations, so he did.

The only one he didn't get, because why would he need THAT - was HepB.

He was 5 when I failed Tecfidera and was being offered Ocrevus, both he and his mother got the HepB vaccine to protect daddy :') - he was very brave (chocolate may have been involved in this bravery - but still very brave).

Whilst anecdotal evidence isn't evidence, he is a fit, healthy, fully bilingual (Spanish and English), very lovely* 8 year-old about 2 years ahead of himself in the school system here.

*I don't think being precocious / pesky is a known side effect of MMR / pentavac and therefore conclude it's inherited from his mother ;-)

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I never understood what anyone had against vaccines: more specifically, vaccines to combat disease. I really don’t understand their distrust and mistrust of people who devote years of their lives to be educated, by thousands of other people who have devoted YEARS of their lives to the ONGOING and ever-expanding study of biology and medicine, that has been built on hundreds (if not a couple millennia) of years of experience, studies, trial and error, and teaching to others—as well as holding everyone else charged with the title of doctor to the same high standards by committee. These medications that have been created by many people working many hours, over many weeks or months or years, building on enormous amounts of previous information and experience, to help fight illnesses that harm is, hurt and kill.

I do understand the explanations, but they don’t comport with the reality of modern medicine. People say they don’t trust drug companies or the medical drug regulators. This is understandable from some of the news stories that circulate from time to time. But it’s not just those entities involved development and/or dissemination and/or guaranteeing safety and efficacy… it’s the whole medical community. And it’s based on everyone’s knowledge and intelligence in the community, not just one person or a few. And if you don’t trust that entire community, then you’ve got a real problem. A whole community of doctors can’t be a union of conspirators looking to fool us—can’t fool everyone all the time. I was once an assistant in a stem cell lab at the University of California, Irvine, and I was talking to a visiting doctor from CHOC (Children’s Hospital of Orange County), who was using the lab to study cerebral cancer specimens of children from around eighteen months to about eleven years old. A difficult job in many ways, as you might imagine. We were talking about the universe of people working on cures, and I asked him what he thought about the people who worked on cures and therapies only because the work interested them as a singular and insular pursuit, or just for the money, instead of because they really care about people and want to help them. He thought about it for a moment and then said, "You know Chris, there are a lot of us who do everything we possibly can to find cures and ease suffering because we want to help people, and even though we might not like it there are those who work on cures and therapies for selfish reasons, and have no interest in whether someone lives or dies. But actually we really need everyone." That was a good lesson for me, and probably a good lesson for anyone.

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Well said, and the reason(s) most people want to have vaccinations for themselves, their family and the rest of humankind - oh and to protect people who genuinely can't have the vaccination.

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Aug 8, 2022Liked by Gavin Giovannoni

I am 66, diagnosed at 45 and have been on Tysabri for 13 years. It has worked very well for me. Being 66 means that the MMR vaccine did not exist when I was a child! I do remember having a rotten case of either measles or German measles at about the age of 11. What do you advise I do - if anything?

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Probably nothing. You can't have a live vaccine on natalizumab and as all three of the attenuated viruses are neurotropic (capable of infecting the CNS) it is potentially risky. You as others have to rely on herd immunity to protect you, which is why it is so important for vaccination rates in the general population to be above 95%.

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Aug 8, 2022Liked by Gavin Giovannoni

omgoodness! I had measles when I was a kid. Long before the measles vaccine was ever available. I am now 64. Having had the disease, does this give me lifetime immunity? I was exposed to mumps and rubella but never had it. When I was pregnant some 35 years ago i tested positive for antibodies to rubella. Should I be concerned about this? Also, i am past due for tetanus booster. I am on Aubagio. Is it ok to get that booster on this drug along with COVID booster? Not sure what to do here.. Flu season will be coming up as well of course. I am very confused about vaccines and taking them while on these DMT's in general.. Thanks in advance for any insight

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Yes. Measles immunity is probably lifelong.

Teriflunomide (Aubagio) is not really an immunosuppressive therapy, but live vaccines are not recommended. Vaccine responses to inactivated vaccines are maintained on teriflunomide; so yes go ahead and get your boosters.

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TY so much for your reply!

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Aug 8, 2022Liked by Gavin Giovannoni

My mum made sure I had all of my vaccinations - or so I thought! The MMR vaccine was introduced when I was 11. It was sprung on me. We were lined up outside the staff room at school, a space we normally weren't allowed into. It was a school I'd only been at for a short time and I did not find it a welcoming or supportive place. I ended up freaking out and refusing the vaccination. Mum took me to the doctor for it, but that experience gave me needle phobia for the following 25 years. I delayed seeking help when I thought I might have MS. Finally I just had to get over it and face the blood tests I needed every three months to be on Tecfidera. When they changed my blood tests to every 6 months I actually struggled a bit more with them, and I worry the phobia will come back.

When I went on Tecfidera, I assumed I'd had all of my childhood vaccinations as I knew my mum would have taken me for all of them. But I had no idea there was an MMR booster as I didn't learn about that until later - and due to my traumatic experience, I would have remembered if I was called in for a second dose! My mum asked at our surgery and they confirmed I'd only had one - but also said I'd had a measles vaccine as a baby and measles as a child (I remember that well too!) so my immunity now would be good.

I am too old for the HPV vaccine and my latest smear test confirmed I have HPV, lucky me...

I also haven't had the BCG vaccination because it isn't routinely given in NZ where I was born and grew up.

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author

For younger people who are risk of getting exposed to HPV, even if you are HPV poitive it is still worth getting the vaccine to cover the other strains.

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Aug 8, 2022Liked by Gavin Giovannoni

Thx so much for this, Prof G. Looks like polio is on the rise again in the US - another reason to make sure u get all ur childhood vacs.

Looking forward to a possible EBV vaccine, what are your thoughts on when this would be ideally administered (in a child 2 or 3 yrs or later) and if u think parents would accept this - if they are not familiar with MS or other blood cancers etc?

(https://www.washingtonpost.com/health/polio-virus-found-in-more-ny-wastewater-after-recent-case/2022/08/04/f36ef482-142d-11ed-8482-06c1c84ce8f2_story.html

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Aug 8, 2022Liked by Gavin Giovannoni

Oh no! Is polio one of those that must be boosted every so many years?

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author

Provided you had 3 doses in childhood adult boosters are not necessary.

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I have no clue. I am one that got some of the first doses of the polio vaccine. I remember the sugar cubes.. but I dont remember whether I got more than one or not. My Mom & Dad are deceased so those records are long gone. I have no idea how to confirm my immunity to this disease, or any other for that matter.

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It's complicated and depends on whether or not it is sterlizing. I have covered this in my recent ECF talk.

https://gavingiovannoni.substack.com/p/will-an-ebv-vaccine-work

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Aug 8, 2022Liked by Gavin Giovannoni

Thanks again for providing such valuable information!

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Aug 8, 2022Liked by Gavin Giovannoni

Interesting topic ! Nice discussion 👏

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Aug 8, 2022Liked by Gavin Giovannoni

I've just re-read your newsletter on the HPV vaccine and it answers the questions I was about to ask you. Thanks for providing this really useful and detailed information!

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Aug 8, 2022Liked by Gavin Giovannoni

If you have had childhood vaccines to MMR and boosters does this mean you won’t need further vaccination? I thought that would keep you immune for lifetime. I am due to be starting mavenclad and also travelling to the Dominican, so am trying to get all my vaccinations done before I travel.

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author

That is correct. You are likely to be immune and protected. And you should be protected by herd immunity.

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Aug 8, 2022Liked by Gavin Giovannoni

I did my MMR antibody blood testing after starting Natalizumab, as we wanted to get on this DMT asap.

Turns out i have past immunity (infection) to measles, Rubella but nothing for mumps. My GP did say my risk to mumps was extremly minor (Australia pretty rare) but your article makes me nervous about possible measles infection again.

as i can't get a live vaccine on Tysabri, would you say based on the above i would be at a higher risk of measles? i know for a fact i had it as a teenager but cannot confirm if i had the MMR vaccine as a child , am up to date on all other vaccines however

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Our virologists state as long as you have antibodies to one of the viruses you don't need a vaccine as this indicates previous vaccination and likelihood of memory T-cell responses. Similarly, they state if you have documentation of two previous MMR vaccines we don't need to screen for immunity and assume the patient is covered.

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Aug 8, 2022Liked by Gavin Giovannoni

Thank you, that is basically what my GP said as well as my neurologist too.

wish they would work on non live vaccines for everything going forward! it really puts us MS people in a pickle.

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It's a damned if you do or don't situation. Im pretty sure i was absolutely fine until i had the flu vaccine. So no, i will not be having anymore vaccines. Of any type.

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Aug 8, 2022Liked by Gavin Giovannoni

I had one of my first relapses one week after recovering from the flu (somewhere near 30); that was over 30 years ago. Have been getting vaxxed ever since. Two things happening at the same time does not make them causal. Would be interested to hear of research behind this, other than anecdotal (get the flu, have a relapse).

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Aug 8, 2022Liked by Gavin Giovannoni

that makes sense actually. Having the flu would activate your immune system and having MS means your immune system doesnt know when to turn itself off.. hence the the relapse after having the flu... interesting. I have experienced much the same after being hospitalized for pneumonia in 2020, Got home just in time to have a really bad relapse from which I never fully recovered

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author

Yes at least one in three relapses are triggered by infections; in particular viral infections such as flu. So it is important to get your annual flu vaccine for this reason.

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Aug 9, 2022Liked by Gavin Giovannoni

Thanks Doctor. I thought I had understood that from something a while back but didn't know if it were backed by "hard data". It's tough keeping track of everything, and now compared to 30 years ago, it's a full time job- more than that. (You know that :-) So thanks for everything while were're on it!

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Well i had the flu every year before that without any issues. I dont care what the research says personally - i will not be having any more messing arounding with my immunity.

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It could be argued that getting flu is playing around with your immunity. We know that flu vaccines are generally safer than the flu so why take a chance with getting the flu.

In the UK 25,000 to 30,000 people die each year from flu or its complications. Very sad when most of these deaths can be avoided by vaccination.

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Aug 9, 2022Liked by Gavin Giovannoni

same for the US. The response against the vaccinations is the same as well. Orit's "I got the flu shot 3 years ago and got sick 3 days later, so it doesnt work anyway" well DUH! it takes time for your body to build immunity from the shot. it doesnt work instantaneously. I have heard all kinds of reasons for not getting vaccines. More so now with COVID. "They told us we wouldnt have to wear masks if we got the shots and the state/county/city/employer is making us do so anyway now. I am not getting any more of the boosters" a week later they get sick from COVID and end up in the hospital barely alive or die. I do not understand this mindset at all. This makes zero sense to me.

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Ahh! Psychology my dear Karin. Another topic for another thread or post on another day. Good luck..

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