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Real members of myHIVteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What HIV symptoms do you have that you didn’t expect?

myHIVteam asked a question 💭
San Francisco, CA
September 27, 2023
 · 
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Answer Summary

Members shared a wide range of unexpected symptoms tied to living with HIV, including nerve pain, weight changes, chronic diarrhea, night... Read more

Members shared a wide range of unexpected symptoms tied to living with HIV, including nerve pain, weight changes, chronic diarrhea, night sweats, shingles, tooth loss, and memory issues. Several members described the emotional toll as equally challenging, with loneliness, depression, anxiety, and dating struggles coming up again and again as burdens that are hard to prepare for. A recurring theme was resilience, with many sharing how exercise, staying on medication, community connection, and self-advocacy have helped them live full lives despite the challenges.

A myHIVteam Member

Living with HIV for 43 years the only thing I’ve ever had was thrush even though my T cell count was down to 75 for a few years. My doctors called me their miracle patient because they just couldn’t figure out why I never was hospitalized for more severe illnesses. Now at 60 I’ve been undetectable for 15 years and feel great.

October 9, 2023
A myHIVteam Member

Diagnosed positive in 2000 and peripheral neuropathy in my feet began in 2013. Chronic stage one kidney disease followed. That didn't stop me from going full time RVing in 2019. Here it is 2024 and I am wintering in South Carolina near Savannah, Georgia. I will continue to travel as long as this 68 year old body will allow.

February 9, 2024
A myHIVteam Member

Paulm3 my doctor says supplements are a waste of money you pee 90% out cause your body doesn’t need it. Eat better foods he said . The only vitamin he says that might be worth taking is vitamin D

June 3, 2024 (edited)
A myHIVteam Member

I have memory loss plus COPD, both fuck with memory. I have no idea what the future holds for me. However I will soldier on and I have a very loving son that will make sure that I am taking care of.

December 7, 2023
A myHIVteam Member

I suffered from ED but this was a result of contracting TB Meningitis 12 yrs after being diagnosed with HIV. The TB messed up nerves in my genitalia and I eventually resorted to a penile implant that has resolved my issue.

October 7, 2023

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