Shingles vaccine

Strike me lucky

Well-Known Member
Anyone had any issues with this?
I have chronic reoćcuŕring shingles snd on avs which help, i break out immediately with avs. My dr mentioned the shingles vaccine and can also help if I've already had shingles.

A few concerns ihave is that with a poor immune system what could happen?

The other is that 18 months approx got tested to see if I needed a shot or had good protection, it came back say good immunity to vzv. Why would increasing antibodies even more when im still getting Shingles. I think the issue is my low nk function not my b cells and antibodies that allow vzv to reactive.

The other concern is its a live vaccine.

So im really not sure.
 

IrisRV

Well-Known Member
The other is that 18 months approx got tested to see if I needed a shot or had good protection, it came back say good immunity to vzv.
Not sure why the vzv vaccine would help in that situation. Evidently low antibodies is not the problem, so why do something to (theoretically) generate more antibodies?

My guess is the same as yours -- it's a different part of the immune system that's failing you. If you are still getting shingles with your own normal level of antibodies then antibodies are not controlling it. Giving your body a healthy dose of a virus your body can't control strikes me as a bad idea.

FWIW, I was told not to have live virus vaccines. Something's not right with the way our immune systems handle viruses. Even though the live vaccines are attenuated, we still run a much higher risk than the general population of getting the infection and then not being able to control it. There's a big UNLESS with this. If there's an epidemic and everyone is catching the virus, you might as well get the vaccine because the risk is lower from the vaccine than from the wild virus that you'll almost certainly get. It's a risk/benefits analysis. Low risk of getting the virus, the vaccine is more risky. High risk of getting the virus, the vaccine is less risky.

Dr Lerner suspected it was the VZV booster that reactivated HHV6 and EBV in my daughter. Herpesviruses can reactivate each other, the little b******s. Something about how they mess with our immune systems, iirc.

I was told to get the killed virus vaccines as long has I haven't had a really bad reaction to them in the past. You can't get the virus from the killed virus vaccine (theoretically), but the risk is that stimulating your immune system with the vaccine could be a problem.

Since there appear to be a lot of subsets in ME/CFS, the right answer could be different for different patients. Since you and I appear to be in the same subset, my guess is that the specialist would give you the same advice I got.

FWIW, I had shingles multiple times until I had long-term, high(er)-dose Valcyte. No outbreaks since then.
 

Strike me lucky

Well-Known Member
@IrisRV
I agree, it doesnt make sense. I wont be trying it. More antibodies when they are already high?? More nk cells would be nice, if they work.


I have increased my famvir from 500mg twice a day to 3 times a day and feeling better for it. Less headaches etc. Its 3pm here and i haven't needed anything for headaches yet which i havent done in a few weeks.

Im using inosine but would like to add some Russian immune mods but cost of everything adds up.
 

IrisRV

Well-Known Member
@IrisRV
I agree, it doesnt make sense. I wont be trying it. More antibodies when they are already high?? More nk cells would be nice, if they work.


I have increased my famvir from 500mg twice a day to 3 times a day and feeling better for it. Less headaches etc. Its 3pm here and i haven't needed anything for headaches yet which i havent done in a few weeks.

Im using inosine but would like to add some Russian immune mods but cost of everything adds up.
My daughter had great luck with inosine. It brought her NK cell function way up. She still has small numbers, though, so everything's not perfect. Still, better function is good.

I know you've been taking inosine for a while -- with no huge success, iirc. Are you taking the dosing INIM suggests? Maybe total amount or schedule matters...?

Glad to hear you're feeling better! That's promising. Sounds like the Famvir is helping. I don't know anything about Famvir dosing. Is 500mg X 3 a moderate or high dose?
 

Beth from Oz

Active Member
Hi Iris, sorry for intruding a little on the conversation here. I don't know how to quote here, but you said that herpesviruses can reactivate each other (little b....'s LOL).
Anyway I had glandular fever as a teenager, got mostly better, but I suppose I had mild cfs with PEM. But in the early 2000's the kids and I came down with chicken pox. Annoyingly this was the second time in my life I'd had it. The kids breezed through it, husband was vey sick. I was the least I'll so I ended up looking after everyone. Long story short I was just wondering if this might have been the turning point for where my health took a decided plunge for the worse. I've been getting gradually sicker ever since. I'd originally thought it may have been that I just couldn't handle having three kids, the last being highly energetic, and a bit of a handful. I don't know but reading your post I kinda put two and two together. Mind you my doctor said that I still had an active strep or was it staph? (Whichever gives one scarlet fever) infection. I must be a walking ball of activated infection. I was just wondering if you had any thoughts on this. Thanks.
 

IrisRV

Well-Known Member
Hi Iris, sorry for intruding a little on the conversation here. I don't know how to quote here, but you said that herpesviruses can reactivate each other (little b....'s LOL).
You are not intruding at all! The more the merrier. That's how we learn from each other.

One easy way to quote a post is to highlight the bit you want to reply to. A Reply button should pop up next to it. Click on that and there you are! There are other ways, but that's probably the easiest to start with.

I came down with chicken pox. Annoyingly this was the second time in my life I'd had it.
As I understand it, this is not a good sign with regards to your immune system. Once you've had it, your antibodies should recognize it and attack it immediately for many decades after. You shouldn't get chicken pox again. Even if your antibodies fade (most commonly in your 70's or 80's) you should get shingles, not what looks like a new case of chicken pox. It's not something to panic about, but worth looking into.

From the little you've told us, I'd be thinking about some kind of immune dysfunction. I don't know what kind of testing is available in Oz. It's not easy to get in the US. Most of us who have had more than the most rudimentary immune testing got it from ME/CFS specialists. Griffith U in Oz has been doing some brilliant work on immune abnormalities in ME/CFS. You might be able to get into a research study there and get some immune testing as a result.

@Strike me lucky knows a lot more about immune and pathogen testing in Oz. Maybe he can chime in here with better info.

Some subset of patients seems to have distinct immune dysfunctions and multiple active infections. I don't know if other patients don't have these problems or just haven't been tested adequately. We still know far too little about ME.
 

Who Me?

Well-Known Member
@Beth from Oz When you post could you put in paragraphs? I have a really hard time reading huge chunks of text. See how @IrisRV did it?

If you could go back and edit your post I'd appreciate it. I think the edit tab is on the left under your post.
 

Beth from Oz

Active Member
Thanks Iris, I really do appreciate your reply. It does give me an idea of where next to go with testing. I've been ill for years now and been seeing doctor after doctor with only two being of much benefit. I don't have a proper diagnosis of me/CFS, but I certainly have the PEM and all the other symptoms. I think I may have been diagnosed by now, but my illness has been slow deterioration, rather than sudden onset, which confused things.

The other problem is that it is a diagnosis of exclusion, and on my low income I can't afford some of the more expensive tests the doctor sends me for. Yes Oz has public health care, but with a lot of tests one has to pay the money out of pocket first, then be reimbursed 3/4 of the money by Medicare. Not so good when you can't afford the original outlay.

As for a faulty immune system, yes it makes sense. Having chicken pox a second time ticked me off, especially since I knew that catching it was supposed to make one immune for life. I remember my mother saying I had a particularly bad reaction to a vaccine I had at 1 year old. I remember taking the polio vaccine as a kid and having no reaction, and apparently I was fine with others. I'm thinking it may have been measles vaccine as that was a live virus one I think. It does fit into a picture of a faulty immune system, I think. Especially since viruses really knock me down.

Anyway thanks for your help. I feel like I can go and demand to see an immunologist (please don't cringe that I haven't seen one already), and go armed with some foreknowledge.

As for Griffith they aren't taking any new patients for now. But what they are doing is great, both for patients and for research.
 

IrisRV

Well-Known Member
Anyway thanks for your help. I feel like I can go and demand to see an immunologist (please don't cringe that I haven't seen one already), and go armed with some foreknowledge.
I'm not cringing at all except at the thought of seeing a standard immunologist. Our immune dysfunctions are not standard. If they were, we'd all be diagnosed with some known immune disorder by now. I've heard of too many cases of immunologists doing the run-of-the-mill tests for established immune disorders and then dismissing ME patients as hypochondriacs. If they don't test for the right thing, they won't find it and then declare there's nothing wrong.
Stupid logic, but unbelievably common. It goes along with that idiotic thing they teach in medical school, "If you hear hoofbeats, assume horses, not zebras." Zebras exist! The hoofbeats could be zebras. Granted, horses are more likely, but that's no excuse for dismissing zebras entirely. We are zebras.

All I'm saying is don't get your hopes up and be prepared to be dismissed and insulted. If you have an easily identifiable immune dysfunction like CVID, then it would be a help to see a standard immunologist and worth doing. If you don't have a currently understood immune dysfunction and your immunolgist knows diddly-squat about immune abnormalities in ME/CFS (which is 99.9999999% of immunologists) then it could be a discouraging, useless, and humiliating experience.

Consider that most immune treatments are expensive, so if you have to pay upfront and then get reimbursed the treatments are likely to be beyond your reach even if your immunologist is willing to prescribe them. Sorry to be such a Debbie Downer. My point is that you should do a lot of research before you invest in an immunologist and don't get your hopes up so high that you'll be devasted if the immunologist dismisses and insults you.

Such is life with ME. We have to gamble that the doctors we see will be the type that looks at our situation and digs deep to find the answer, not an unthinking one who just runs standard tests and makes snap judgements. The price we pay for losing that gamble is both financial and very personal. But what other choice to we have? Do nothing?
 

Beth from Oz

Active Member
@Minx sorry for not making my post easier to read, and thanks for pointing it out to me. Not sure how to edit yet.

I have no problems reading lots of text myself, and I forget others do have problems. My main problem is listening. I can get very confused when people are talking to me. I'm better with a few sentences rather than lengthy monologues, so I apologise for visually monologue-ing.

@IrisRV thanks again for your input. I now think it might be best to go back to my last doc. He's the best I've seen so far, he believes me and even better told me honestly that sometimes "we just don't know why you're sick, which doesn't mean you're not."

I only stopped seeing him because I had to move, and he's a bit too far away.

Yes it's a gamble between humiliation and getting help and it shouldn't be that way. I've been humiliated enough I think. The last time was by a neurologist. Nice man with an awful attitude. At least he sent me for a diabetes test, which in my opinion should have been done years ago.

It's been a long search to find what's wrong with me. I spent years wishing this illness had a name, only to find it's the worst one possible. I found it by googling "worse from exercise".

It's a delight to find I'm not alone. I've been telling people for years that exercise makes me sick, only to be met with blank disbelieving stares.

Anyway I'm on some toxic herbs currently that are working well enough for me for now, and keeping me functioning, so I might just stick with the alternatives for now. Natural therapists tend to be kinder.

Maybe one day I'll get to see the Griffith people one day.

Thanks again.
 

Strike me lucky

Well-Known Member
@Beth from Oz
Griffith uni are doing great research but i havent heard much about their clinic. From what i have heard they are only treating symptomatically and referring patients to different specialists. So really no different to a good gp who understands cfs. Their special testing is only done in clinical trials and not done outside. Ive tried and asked if i could pay for different testing but got know. Keep an eye on their research but i think a gp to help symptomatically thats understanding and willing to try a few things is probably your best bet.

If you have problems with chickenpox/shingles/vzv its worth looking into staying on antivirals while trying to increase immune function, pacing etc
If you can get in a griffith study would be good to get testing nk function etc. Ive heard they are looking at trying to include people from sydney and Melbourne.
 

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