After 24 Years' Use, Are HIV Meds Not Enough? | myHIVteam

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After 24 Years' Use, Are HIV Meds Not Enough?
A myHIVteam Member asked a question 💭

A dear friend started taking HIV meds in 1998 but died in 2022, aged 70. In those 24 years he never missed a dose and he received the best possible medical care at all times. He ate healthily, took plenty of exercise, and was always positive-thinking and cheerful.

But from the start of 2021 he began to suffer from
- chronic all-over itching
- severe weakness and fatigue
- inflammations around his eye sockets
- unexplained constant swelling of his penis (when flaccid)
- chronic kidney… read more

posted November 19, 2022 (edited)
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A myHIVteam Member

I contracted the virus in the 1990's and on meds since. I was fortunate Protease Inhibitor were just FDA approved. And believe it was Protease Inhibitors that controlled my viral load and raised Tcells. I am a patient and a nurse on the field. not that the virus cares which field you are on. however, the reason I say this is because I am constantly surrounded by healthcare providers that treat the disease. And I am obsessed with knowing more. So I am always asking questions. I hate to hear this, "we just do not know." Why some people rocket to 1200 after 400 and some dont respond at all to meds "we dont know." Why some respond to a particular medicine and others dont "we dont know." Why someone develops a buffalo hump and others don't ""we don't know."" Why some get KS and others dont "we dont know." I have been on the same meds for over 10 years. Why they still work. "We don't know." The research seems to be on going. And there is a lot we just do not know yet. I don't know, can we say, fate, genes, type of virus, when was the person introduce to the virus? Are there certain mutations that render the virus less effective to medications? "We dont know enough." Trust me I am surrounded my healthcare providers and patients. I am watching, listening and learning. My theory: HIV is not one disease but a constellation of many consisting of mind , body and soul, skip one, you might as well skip all. It will not work without working on all three. Every thought, action, every feeling, every emotion, surroundings, relationships, food, exercise, perception of self the virus and the world around you will help you or hinder you; your sleep; the way you see yourself in the mirror, friend or foe? My theory make peace not war with the virus. Communicate with the virus. Make the virus aware that if it loses you, it loses itself. Reminder it, It needs you. You don't need the virus. Visualize the virus; visualize your Tcell and how many you have (lots) and how healthy the are. Don't hate anything or anyone! Even the virus. Cut the shit with you ego, mean what you say, say what you mean. Respect your self.,,really important, get out of certain websites, you know exactly which ones. It was hard for me. But I did it. I have no comments on drugs. You know the deal. And get rid of the fucken phone already and actually converse with other mammals just like you. Not that any of you have asked me any of this. However, I hope it helps someone out there.
MAA

posted November 21, 2022
A myHIVteam Member

I’m a late and recent arrival to the HIV world, having been infected C at age 66 and diagnosed at 67. I C was put on Biktarvy which has C successfully kept me undetectable and in the CD(Phone number can only be seen by the question and answer creators) range. I am 70 now, and my blood work shows some troublesome numbers related to tris and cholesterol as well as kidney and liver related chemicals. Other than some serious muscle aches, i really can’t tell what my current life expectancy is. I could be sicker than i feel and die tomorrow, or i could reach the normal American male life-expectancy. I’m taking it one day at a time, thanking God for each day ultimately He is giving me. I’m grateful for you all that share so I don’t feel so all alone with this disease. Theere is much expensive experience and wisdom in this gepup for which i am thankful.

posted July 4, 2023
A myHIVteam Member

Update to main post above:
On his death certificate the doctor who led the team looking after this patient in his final days and final hours has written the following under "Cause of Death". (Note the inclusion of HIV as having been one of the causes of his death):
I. (a) gastrointestinal haemorrhage.
(b) intestinal ischaemia.
(c) gastrointestinal inflammatory disease.
II. End stage renal failure, hypertension, coronary artery disease, human immunodeficiency virus.

posted November 22, 2022
A myHIVteam Member

As a trained hospice end of life doula, I have found this same shut down occuring with many different diseases. HIV, all types of cancers, ect. and persons who have lived with addictions even though sober for many years. Science cannot explain this yet. We are taught to look for the signs of pain and to comfort the patient with medication. Having been with so many end of life patients, I wonder what could be done different to produce a better outcome and have not found an answer. This is not medical advice just my observations. Having started on AZT and the early medicines causing extreme problems for over 18 years. I'm on Juluca and for the first time it has very little side effects. I know that in the end my body will break down and I'm just trying to live the best I can till then and my faith gives me my ultimate hope. Pastor David Bast INELDA trained Doula. Note: In the 80's and early 90's I sat with so many AIDS patients and at least now we try to control the pain it was not alwys this way!

posted November 22, 2022 (edited)
A myHIVteam Member

Hi I am Millie living with Hiv 29yrs 1994, I feel fine I have medical issues Cholesterol, triglyceride
blood pressure, but I feel great just got to watch my intake of food, I think all the time when is my time I always say we that live with Hiv can die from other causes other the Hiv as a woman I never at 66yrs looked up a woman's life span, it sad how this man died the way he did and for the Dr to put all his causes not cool about that
May He Rest In Paridise 😇

posted July 16, 2023

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