Always sick despite undetectable
It's been two years and a half that I have been undetectable and my quality of life just plummed. No energy, brainfog, gastrointestinal problems, severe mental and physical fatigue. I've done several tests for vitamins, went to several doctors. Nothing. I've tried to switch arvs , nothing. Am I the only one? Is that how it's going to be my life for the next 60 years?
Hi
. It must be extremely frustrating to be told your HIV is under control and also experience all of these issues. The symptoms you are experiencing, unfortunately, are possible side effects of HIV treatments (see: https://h-i-v.net/common-arv-side-effects). I know you mention switching treatments, but sometimes it can take multiple tries to get the right combination. Our patient leader Ze wrote here about experiencing symptoms like yours and then finding a treatment that worked for her: https://h-i-v.net/living/triumeq-side-effects. I wish there were easier/better answers and hopefully others will chime in with their thoughts. Please know that people here understand and that this community is here for you. Best, Richard (Team Member) Well, I was not taking dolutegravir for a while and the symptoms remained the same.
Hi
. I can't say how long it takes for side effect symptoms to dissipate when off the medications, but I'm also curious if anyone has ever mentioned a potential for an autoimmune condition to you. I ask because, while they may seem counterintuitive with HIV, as HIV has become a more manageable, chronic condition, autoimmune conditions have become more of an issue and some can have symptoms such as you described. This article goes into further detail: https://www.sciencedirect.com/science/article/abs/pii/S1043661817315931. I'm not remotely saying this is what is happening with you - I'm not a medical professional and just trying to think of possibilities and want to share the information. Only a doctor can do the proper diagnostics. Hope the information is helpful. Best, Richard (Team Member)
Thanks, Richard. The thing is that I ever talked to someone in person or on internet that is facing these symptoms I am while on dovato or arv in general. The great majority is living their lived fine, they can exercise, can have sex, etc..My fatigue is just unbearable. I had some autoimmune panel and it came back all negative. I'll take a look at what you sent me, though. Thanks.
I feel the same I was diagnosed in 2021 ever since then my life has plummeted too physically mentally in every way possible seems like ever since I've gotten HIV all I see is doctors and specialist my fatigue is so bad my memory is failing me that I cancel plans all the time everybody says well Shaq has it and he's doing okay well I don't think everybody's like Shaq I'm pretty sure he got it cured already sitting on piles of cash so yeah I do suffer with the same stuff and more didn't want you to be alone
I don't know what else to do for it too I just keep getting sent to different specialist MRIS all kinds of stuff it's like my whole life is different and nobody understandsHi
. Thank you for your willing to share your story and help someone else to not feel alone. This is definitely a place where others understand and it is always great to see the way community members try to help each other. Hoping the tests can finally lead you to some answers. Please feel free, if you like, to keep us posted on how you are doing. Best, Richard (Team Member)
