I'm HIV positive AMA

[HIVpos]

Although most MNers seem to know this stuff, I keep on seeing incorrect info posted (a few days ago it was something about HIV taking 18 months to show up on tests - so untrue!!!)

Anyway - my "coming out" post from last year is here if anyone is interested www.mumsnet.com/Talk/relationships/2942589-Getting-back-in-the-saddle-and-HIV

It may only have been 18 months from diagnosis to death. I was very young and can't really remember

Hi, this is a really great and informative thread. Thanks so much OP. My question (and I'm sorry if this is delicate) ; is it normal life expectancy? I see you mentioned increased chance of some cancer but assuming you don't get this, is it normal life expectancy? Thanks

Rainbow it’s ok - no question too delicate but then hanks for the thought . The professionals say “near normal” life expectancy, although I have also heard same life expectancy used. My take on this is that I don’t think people really know yet. From a quick google average life expectancy in the UK is around 79 for men and 83 for women. My dad died at 72 and my mum at 76 - and neither of them had HIV.

I think as HIV is an autoimmune disease it has the potential to cause problems from other autoimmune sources. So stopping smoking will reduce the risk of cancer, eating healthily will help prevent diabetes etc. If someone has HIV and doesn’t make these changes it might make them more prone to other illnesses as a result. That’s my take on it anyway. Basically it’s uncharted territory as treatment has got so much better now.

Another thing - our care is so good - regular liver and kidney tests, tests for bone and cardio health as we get older, back to annual smear tests etc, so things might get picked up earlier than they might have.

I think that's a really interesting point and thanks for answering so honestly. It's almost like a health 'scare' or a close call which might mean some people lead a healthier lifestyle because of it and thus counterbalancing any negative impact of the virus. You sound fab OP and I wish you a long and healthy lifestyle.

Thank you Rainbow, that’s so nice of you .

Hi OP

Just to say I've only just seen this post after finally getting in the head space to start reading up on HIV myself after being diagnosed nearly 2 months ago and I can't say enough how much it's helped put my mind at ease :)

I first want to thank you OP and others commenting too.
While I consider myself fairly wise about the subject. I have learned new things too.
The amount of babies born to HIV mothers and being negative is amazing imo. I can't explain why but I (obviously) imagined a lot more would have been positive than weren't and that (my own perceived) gamble would be so risky. It makes me happy that it's not like that at all.
I've been tested a few times in my life (I'm 42) during pregnancy and during sti screenings when entering new relationships - I've always had the - I'd rather know attitude.
HIV absolutely does not scare me.
I'm more afraid of HPV! of which I have a really nasty strain that I can't clear and the risk of developing full blown cervical cancer - which is currently well on it's way, even after multiple treatments. The damage it's causing to my cervical cells in such a short space of time is outrageous!

Oh wow I hadn’t realised that this thread was still being posted on.

@ASB123 I hope all is going well with you? Have you started the meds yet? It’s a bit of a shitty time to get diagnosed during a pandemic but on the other hand others that have been have had excellent care as the rest of us having moved to regular phone appointments instead of being seen every 6 months.

Feel free to message me at any point. If you want there are organisations offering online support, like the Terrence Higgins Trust forum which is just for those of us living with HIV www.tht.org.uk/our-services/online-services/myhiv-forum You can also have 121 peer support here with Chris who is really helpful www.plushealth.org.uk/peer-support.html

Seeing as the plan is to get new HIV transmissions wiped out by 2030 this is the perfect time for everyone to get tested 👍🏻

@Fuckityfucksake I agree, it’s much better to have the rather know attitude. Health anxiety is a real thing and many bury their heads in the sand which then provokes more anxiety, which can be tough. Doing nothing means that it can’t be treated.

Coincidently, the nurse who did my last smear works in the mother and baby hospital and supports HIV+ women. Apart from the fact I felt immediately more comfortable knowing this, due to the fact I get annual smears due to slightly higher risk of cervical cancer for this due to being HIV+, we had a great discussion about women with HIV making informed choices and along with bearing HIV- babies Some electing to also breastfeed them with support.

Sorry you got diagnosed with one of the high risk strains of HPV - I did too but no abnormal cells found. I think that due to the recent changes in cervical screening there will have been a lot more positive results for HPV generally and women then go on to clear it naturally. I had understood that these types of cancer develop over many years and hope you get the best treatment to sort it . You could have a chat with one of the cancer trusts like eveappeal.org.uk/supporting-you/ask-eve/ If you want. I had a great long chat with Karen, who’s had cervical cancer. She was really so helpful and informative.

I think you're very brave talking so openly, I have learnt a lot. I do have one question, with illnesses like Covid-19 and flu etc are you more at risk of catching them? Were you on the vulnerable list and needed to isolate? Thank you.

@IamHyouweegobshite

I think you're very brave talking so openly, I have learnt a lot. I do have one question, with illnesses like Covid-19 and flu etc are you more at risk of catching them? Were you on the vulnerable list and needed to isolate? Thank you.

Thank you - not that brave really as on here I'm pretty much anonymous. However I've taken part in other projects now which has involved being open about my status, including some social media.

For people who are HIV+ and flu etc, It's not so much increased risk of catching other illnesses but any increased risk of having a worse reaction. This can happen with flu so whatever age we are we get an annual flu jab. Pneumonia can be the same but is variable as to if our clinics suggest we get in done. I had a regular check up a few days before lockdown and my consultant suggested I get it done as general protection given the pandemic and so little being known. It was quite funny when I phoned my GP and the receptionist, who was fielding away all but most important cases, asked if I realised it wouldn't stop me getting coronavirus I just responded that "my consultant" said I should get it done (and mentally dared her to ask more questions!!)

With coronavirus the UK Gov guidelines initially put us on the vulnerable but not shielding list. There was a lot of confusion as some people were told by their GPs that they should shield (due to coding used in their notes I think). BHIVA quickly stepped in with guidelines which said that for those of us undetectable on meds and no other issues they should follow guidelines for the general population. Only those who had very low CD4 count or HIV related illness were recommended to shield and someone newly diagnosed might have suggestedto take extra precautions.

A couple of studies done so far haven't included enough data to be reliable - eg not including whether those taking part are UD or have another health condition like diabetes or CVD. I know a few HIV+ people who've had coronavirus and their symptoms have been slight (loss of smell), a bit worse (feeling really crap for a week) and one who had to get ABs after about 12 days.

hi op, i need to get tested but i’m terrified.

can you tell me what symptoms you had if any?

hi @Greeneyes78 symptoms can range from nothing to something like flu and swollen lymph nodes, which could also be due to other things. Mine were actually like a bad sick bug for 10 days. These only tend to happen during seroconversion which is a couple of weeks to a month or so after contracting HIV. Late diagnosis can involve from just feeling generally under the weather to something more.

Which isn't really helpful at all. Rather than going by symptoms, you'd be better going by anything that might have put you at risk of contracting HIV. Is there anything you can identify here? Happy to tell you the ways that someone can contract HIV - which is really quite difficult - if you like?

Getting tested is the only way to know for sure and is really much more preferable than not knowing even if it might seem scary at the time.

Thank you so much for replying. Shortly before i met my now boyfriend I had a random night but we used protection. I can’t remember any flu like symptoms after it though i think i did have a cold before. This was 7 years ago. In the last few years i started getting thrush just before my period and a couple of years after that i’m sure i started to get oral thrush. This has freaked me out no end. The oral thrush was just a guess on my part, no Doctors involved.

Over the years I have educated myself about HIV so i’m aware how it’s contracted. My head does be in a tizz over this every so often and then when i see threads like this i feel like it’s a sign. I’m crackers i know.

It doesn’t sound like the encounter 7 years ago put you at any risk of HIV if condoms were used properly. If, say, the condom had broken it would have left you in no doubt that it had as it would have shredded and that might have been a risk.

Thrush is actually pretty common before/during/after periods due to changes in the PH level of the vagina. Oral thrush, if it is this, can also happen due to stress. I get some mouth soreness and furry tongue when stressed and use a mouthwash with chlorhexidine like Oraldene. You might find taking probiotics help. If thrush persists and you find OTC remedies don’t help Or you’re not sure what it is then see your GP.

If you and your current partner have previously had other partners then the best and most reassuring thing would be for both of you to get tested for all STIs if you haven’t already done so. See it as the responsible thing to do. If you google free STI testing you might find a service in your area that offers postal tests.

HTH