Monkeypox

[BootmanLA]

4 hours ago, ErosWired said:

I had chicken pox as a kid. My body forgot all about it, so the second year after I survived nearly dying from AIDS, I got shingles.

Just a side note: once you've had chicken pox, you're actually *more* likely to get shingles as an adult, because the virus is in your system (since, as you know, they're caused by the same virus). Something like one in three people who have chicken pox go on to have a shingles outbreak as an adult, even without HIV. If you didn't have chickenpox as a child, that's another vaccine that most adults *should* get (if they didn't get the vaccine earlier). 

That said, HIV does make it more likely that your system will allow an outbreak of shingles than if you were HIV-negative, because (as you note) the immune system is already being pounded on.

[PozBearWI]

6 minutes ago, BootmanLA said:

Just a side note: once you've had chicken pox, you're actually *more* likely to get shingles as an adult, because the virus is in your system (since, as you know, they're caused by the same virus). Something like one in three people who have chicken pox go on to have a shingles outbreak as an adult, even without HIV. If you didn't have chickenpox as a child, that's another vaccine that most adults *should* get (if they didn't get the vaccine earlier). 

That said, HIV does make it more likely that your system will allow an outbreak of shingles than if you were HIV-negative, because (as you note) the immune system is already being pounded on.

@BootmanLA Is HIIV pounding on a medicated HIV poz person?  Or is it so well controlled that further damage to ones immune system is stopped?

[ErosWired]

3 minutes ago, BootmanLA said:

Just a side note: once you've had chicken pox, you're actually *more* likely to get shingles as an adult, because the virus is in your system (since, as you know, they're caused by the same virus). Something like one in three people who have chicken pox go on to have a shingles outbreak as an adult, even without HIV. If you didn't have chickenpox as a child, that's another vaccine that most adults *should* get (if they didn't get the vaccine earlier). 

That said, HIV does make it more likely that your system will allow an outbreak of shingles than if you were HIV-negative, because (as you note) the immune system is already being pounded on.

I would presume that would be due to a tendency toward a fading of immune response in an individual over time and/or a building of resistance to the body’s native defense by the resident virus (devious bastards). I suppose the effect of AIDS is the equivalent of making it as though the individual never had chicken pox at all. I have, indeed, now been vaccinated for shingles. Once was quite enough, thank you.

[ErosWired]

3 minutes ago, JimInWisc said:

@BootmanLA Is HIIV pounding on a medicated HIV poz person?  Or is it so well controlled that further damage to ones immune system is stopped?

The purpose of antiretroviral therapy (ART) is to stop the ability of the virus to replicate itself. It is the damage done to immune system-relevant cells in this reproductive process that cripples the immune system and if not halted ultimately causes its failure. The medication is highly effective, but not totally effective; even Undetectable persons continue to have a vestigial viral load, which will continue to attempt to do what its nature demands - co-opt the immune system to serve itself. It never stops trying. The moment a person stops his meds, the virus resumes its work full tilt. The virus may not be pounding away at the immune system at the same debilitating rate, but it’s always trying to.

[BootmanLA]

Jim - Eros answered this much more clearly and succinctly than I could have.

[hntnhole]

My life-partner got shingles years ago, and while I never did get shingles (despite the chickenshit as a kid), I suffered through the entire thing right along with him, doing what the internist told me to do to help alleviate as much as possible.  

Later, at a certain age, I got the shingles vax, as a preventative, since I knew first-hand how debilitating it is.  If I recall (and I may well not), we're supposed to get a shingles booster every 10 years or so, and I'll do that.  

When there are existing preventative medical steps to take to avoid illnesses, why on earth wouldn't we take advantage of them?  I just don't understand why some folks wouldn't.  

[ellentonboy]

I am incredibly grateful for just how easy my Ryan White Case Manager set up my vaccinations.   No going to the Health Department, no standing in line, nice non-judgmental environment.  I really hope everyone on this Forum takes this illness seriously, does their homework and tracks down a vaccination site.

Nice to see @hntnhole comment regarding the shingles vax.  I had begged my internist for it, only to be told I wasn't eligible. I saw friend after friend suffer.  Then to my surprise I was suddenly eligible, I got it at my "friendly" Publix pharmacy.  It set me back a whopping $3.00 copay, money so well spent.

I don't see much really mentioned about shingles on BZ,  I hope guys will wake up and because from what I have seen, it's incredibly painful and does not go away over night.  Get the vaccine if you can!

[Everopen]

Dallas county public health gives vax for free - drive thru get jabbed leave. And they send you a reminder when the 2nd is due.  Easy and convenient 

[ErosWired]

On 10/29/2022 at 10:36 AM, hntnhole said:

When there are existing preventative medical steps to take to avoid illnesses, why on earth wouldn't we take advantage of them?  I just don't understand why some folks wouldn't.  

The origins of anti-vaccine culture are complicated and link to multiple sources related to different individuals attempting to draw perceived associations between various vaccines and certain harms. While vaccines do pose very limited risk to some individuals, the aggregate benefit vastly outweighs the risk, and in most cases the claimed causal link between a vaccine and a health condition has been proven false.

But frightened humans are prone to react irrationally. When in trouble or in doubt, run in circles, scream and shout. Although getting preventative treatment would seem to make logical sense, people base their logic on what they assume to be true. If they assume that vaccines are dangerous, it is logical for them to reject the treatments. And even if people aren’t anti-vax, most people are, at some level, anti-needles. Pretty much nobody likes getting a shot. So from that perspective, avoidance is understandable.

[SoCalBBversbttm]

I received an email from my healthcare provider asking if I wanted to participate In a Monkeypox infection study for those that have already been vaccinated.

APLA Health is partnering with UCLA to conduct a study on the JYNNEOS monkeypox vaccine and risk factors for infection 

Participants will receive notification of their monkeypox antibody status every 6 months.

Would you consider participating?

[120DaysofSodom]

I work on a 28 bed ICU that was restructured two years ago in Dec 2020 to handle the COVID-19 pandemic, all the rooms are negative pressure, and I have been with this unit since Dec 2020 when it was like a war zone. With the rollout of vaccines, we have seen a massive decline of people requiring hospitalization for COVID, and those dying from COVID, and so we take other cases that are contact precaution. While we still have tons of COVID patients, they dont really die from COVID like they were in the early days of COVID. We have started receiving in recent months monkeypox cases. I received my second dose of JYNNEOS several months ago in August I think it was, and even I still am squeamish to see some of these patients bodies. One patient we have had on the unit for the last month will likely either have his penis amputated or it will just simply self-amputate because it is so gangrenous. He never treated his HIV, so he has AIDS and like 2 WBC's, he has meningitis, hes syphilitic, so h e has no immune system. He has been on the unit with the pox since September, and he is still getting outbreaks of the pox currently.

Please get that vaccine. His is probably the worst case in the country. I cant imagine anything worse than his. John Hopkins sent us a special custom made order of monkeypox antibodies to administer him intravenously almost continuously.

[tallslenderguy]

On 11/1/2022 at 6:53 AM, ellentonboy said:

I am incredibly grateful for just how easy my Ryan White Case Manager set up my vaccinations.   No going to the Health Department, no standing in line, nice non-judgmental environment.  I really hope everyone on this Forum takes this illness seriously, does their homework and tracks down a vaccination site.

Nice to see @hntnhole comment regarding the shingles vax.  I had begged my internist for it, only to be told I wasn't eligible. I saw friend after friend suffer.  Then to my surprise I was suddenly eligible, I got it at my "friendly" Publix pharmacy.  It set me back a whopping $3.00 copay, money so well spent.

I don't see much really mentioned about shingles on BZ,  I hope guys will wake up and because from what I have seen, it's incredibly painful and does not go away over night.  Get the vaccine if you can!

Getting shingles is how i learned i am HIV poz.  It wasn't a fun disease, and for me was probably opportunistic related to my compromised immune system because of HIV.  It took about 6 weeks to resolve and was hard to diagnose. At first the suspicion was appendicitis, or some intestinal issue because of the symptoms. i eventually developed a rash, but it was minimal, just a few spots. i got on HIV meds immediately and once i became undetectable, my immune system butyl back up and i have not had and issue since. 

There is a lot of ignorance about vaccines. To me, especially after becoming a nurse, they are the best medicine we have in healthcare.  Vaccines waken and employ the bodies immune response vs other interventions where we directly try to kill the disease with a drug. Our bodies are the smartest doctor we will ever have.  The drugs we use to directly combat a disease have side effects and are an after the fact response we use once we are sick. Vaccines are preventative medicine. 

[BootmanLA]

11 hours ago, 120DaysofSodom said:

I work on a 28 bed ICU that was restructured two years ago in Dec 2020 to handle the COVID-19 pandemic, all the rooms are negative pressure, and I have been with this unit since Dec 2020 when it was like a war zone. With the rollout of vaccines, we have seen a massive decline of people requiring hospitalization for COVID, and those dying from COVID, and so we take other cases that are contact precaution. While we still have tons of COVID patients, they dont really die from COVID like they were in the early days of COVID. We have started receiving in recent months monkeypox cases. I received my second dose of JYNNEOS several months ago in August I think it was, and even I still am squeamish to see some of these patients bodies. One patient we have had on the unit for the last month will likely either have his penis amputated or it will just simply self-amputate because it is so gangrenous. He never treated his HIV, so he has AIDS and like 2 WBC's, he has meningitis, hes syphilitic, so h e has no immune system. He has been on the unit with the pox since September, and he is still getting outbreaks of the pox currently.

Please get that vaccine. His is probably the worst case in the country. I cant imagine anything worse than his. John Hopkins sent us a special custom made order of monkeypox antibodies to administer him intravenously almost continuously.

I would encourage you to post about this in discussions elsewhere when people are glamourizing chasing. Granted, people who become poz after chasing (and who test regularly hoping they've converted) can go on meds themselves to keep HIV under control. But even that has long-term impact on your body's ability to ward off other infections.

Even worse are the ones who encourage others to go get pozzed and to stay off medications so they can poz others. This is the kind of thing that can happen - once your body's immune system collapses, almost any kind of infection can incapacitate you for extended periods. Those of us who lived through the 80's and early 90's when HIV was truly a death sentence and not a "health maintenance issue" know what that's like.

[PozBearWI]

14 hours ago, BootmanLA said:

I would encourage you to post about this in discussions elsewhere when people are glamourizing chasing. Granted, people who become poz after chasing (and who test regularly hoping they've converted) can go on meds themselves to keep HIV under control. But even that has long-term impact on your body's ability to ward off other infections.

Even worse are the ones who encourage others to go get pozzed and to stay off medications so they can poz others. This is the kind of thing that can happen - once your body's immune system collapses, almost any kind of infection can incapacitate you for extended periods. Those of us who lived through the 80's and early 90's when HIV was truly a death sentence and not a "health maintenance issue" know what that's like.

@BootmanLA What has been the effect on you?

[BootmanLA]

3 hours ago, JimInWisc said:

@BootmanLA What has been the effect on you?

@JimInWisc Do you mean the impact of having HIV has had on my life?

If so: like some others here, I was diagnosed after a longish period of not having regular sex, which suggests I had been poz for quite some time (though given my sexual practices, it's unlikely I ever infected anyone else). It was discovered when I woke up one morning after a long period of not feeling "great", having lost a noticeable amount of weight (which I thought was a good thing), and couldn't really get out of bed. My partner and our tenant (in a separate apartment from us) got me first to Urgent Care, then to the ER when UC said that's where I needed to be. I was severely dehydrated, among other things, and the ER staff "backed into" the HIV diagnosis when someone put a lot of pieces together and asked about my status. Although the IV fluids they gave me stabilized me, in the ensuing few weeks before I could get the lab work done to start my HIV treatment, I deteriorated further (needing to use a wheelchair to get around our house and needing help to get in and out of the shower.

I will say once I got on treatment, my system recovered rapidly. I'd gone from about 175 lbs before "getting sick" down to just below 130, but with the return of my appetite on treatment I was back up to about 180 within six months (and I've since stabilized right about 200 lbs). In the process of getting regular lab work for my treatment, the doctors discovered my blood sugar was running high and added a mild medication to keep it under control. My cholesterol was also off (bad cholesterol high, good cholesterol low), so a statin was added for that (which only really helps with the bad cholesterol). My blood pressure was running a little high, not enough to be worried about on its own, but in combo with HIV and the blood sugar medication, the BP was starting to impact my kidneys, so I'm also on a low-dose BP med.

Before I was diagnosed with HIV, I had two bouts with shingles, which (in retrospect) were likely enabled by the immune suppression I was undergoing. I'd assumed that I was just more susceptible to them because my younger sister had shingles in college and my older sister had them as an adult shortly before I did. 

I will note that I was uninsured at the time of my diagnosis, because the ACA had not really kicked in fully providing the deeply discounted premiums for lower and middle income people yet. But my diagnosis made me eligible for coverage under a Ryan White program - and that's how all the additional health complications I've had were able to get fixed. I also had long known I had sleep apnea, but being uninsured, the self-pay cost of $2,500 just to have it diagnosed coupled with the costs of the CPAP machine made treating that out of reach. All of that got addressed while I was covered under the insurance our state's Ryan White funding provided.

Since then I've been able to boost my income considerably such that I could afford even the steep insurance costs for an individual policy without a subsidy. As I pointed out to others, even at $1,350 a month in premiums for a fairly high-deductible policy, the cost of medications alone would have vastly exceeded that outlay, and between the insurance and copay assistance the net cost of my HIV medications for me was $0.

And to be honest: I'm one of the lucky ones, because I know how to navigate systems, find the assistance I needed, and so forth. A lot of people don't, and caseworkers who are supposed to help them are typically overworked and underpaid. It's very easy, if you are HIV+ and don't know the systems, to fall through the cracks without someone experienced to advocate for you - you have to push back at times when insurance wants to deny claims or coverage, and those who aren't accustomed to challenging authority can get screwed.