Question
I am reticent to start treatment…
12 February 2024. Related: Adherence, All topics, CD4 and viral load, Newly diagnosed, Starting treatment.
Hi, I am recently told over the phone by nurse at the local sexual health clinic that I am hiv positive. I had not had sex since my last test six months ago which was negative.
She made appointment for me to see a doctor the following week where I can ask my questions, and told me to drink lots of water.
I appear very well and healthy and have not had a day ill in well over twenty years, also I have not have an vaccines. I am reticent to start medications. Is there support for this option?
Answer
Hi, how are you doing?
How have you been coping since finding out you are HIV positive? do you have a support network around you e.g., friends, family, your doctor?
It is good that an appointment has been made to see your doctor. Have you got your questions sorted that you would like to ask?
It is good to hear that you are appearing well and healthy. Have you had any further tests done yet to test for your CD4 count and viral load?
By not having vaccines do you inc. childhood vaccines, or more recent ones like COVID?
Can I ask what about treatment you are reticent to start? Treatment is often well tolerated and new generation medication has very few side effects and most people find they are easily used long term.
This is a link about starting medication.
For pastoral support, The Terrance Higgins Trust would be suitable to contact. They will also be able to put you in contact with peer support groups.
With any questions regarding HIV treatment, i-base would be most appropriate to ask. We are an HIV treatment advocacy charity.
Josh.
Hi Josh, thank you for sharing your story. Have you now started treatment or had conversations with someone about doing so?
You’ve mentioned your hesitation regarding side effects but you also recognise your health is failing without treatment. What side effects are you most concerned about? Even starting at low CD4 counts, treatment can help improve your life expectancy. You do not need to think that you won’t be living much longer. Even with CD4 counts lower than yours, starting treatment can recover CD4 counts and suppress HIV. Doing this ensures that you can have a life expectancy similar to someone living without HIV.
Hi Iba. Just thought I would share my experience with you because I also didn’t want to take arv. I was diagnosed in 2018 shortly after I contracted hiv. I went to a doctor and was given a prescription for genvoya. Call me superstitious but I just have this gut feeling that by the luck of the draw I’m going to be that 1 in 100,000 people that has a serious side effect from it that effectively kills me. So I never took them. I’m currently 38 and after 5 or so years of no treatment my viral load is high and my cd4 count is down to 400. Iv begun getting opportunistic issues like shingles, which are evidence my immune system is failing. I’m still afraid to take the medication because I really do have a gut feeling it’s going ti kill me. But at this point not taking it will clearly kill me as well. And unfortunately it’s not a very clean death. I would literally fill up with parasite and fungus and stuff inside and out until it Rots me enough for my blood to become toxic and poison my brain into decaying rapidly. Even if i start now my hesitation has probably taken 10 years if not more off of how long i will live.
My suggestion is to take York diagnosis more seriously than I did because every day your Not taking it means a week taken off of how long you will live. So ten years without it makes a 20 year old roughly 90. And not long for this world. Please do me a favor since im not going to last very long. Just get over it and take the meds. Hopefully my mistake can at least get you to avoid it and suffering the same consequences. Best of luck. God bless.
Hi Iba, apologies for the confusion. Often comments are posted under incorrect questions stems and moving them into new questions can also lead to confusion.
I-base doesn’t use an open forum type Q&A e.g., connections between posts are limited. This is due to the treatment information and advocacy aspect of the charity requiring that posts be evidence-based and guideline informed. Unfortunately i-base does not have the capacity to connect people and offer additional pastoral support as with other charities in the UK.
I posted about my diagnosis and treatment choice, as was hoping to get some feedback and help in the comments. Yet the comments posted are about breastfeeding? along with your replies. Can I ask, am I posting incorrectly on here? It does not make sense, I am very confused.
Hi Zama, tummy issues do not increase the risk of transmission to baby. This is not true.
Thank you so much for reassuring me. Also, I read that having tummy issues increases risk, is it true? Because I’ve had a few tummy issues like stomach aches but not like diarrhea.
Thank you for your reply Josh. I know you are a treatment advocacy charity. I would like to know if there is any support group, or something? For those who are choosing not to take medication. Cannot find anything no matter who i ask, feel so alone in my decision. Many thanks
Hi Zama, no you do not need to be worried. This is not going to risk transmission to baby and you can continue breastfeeding.
Hi, I am a breastfeeding mother and my child is 7 weeks old, VL is LTD and first test at birth was neg. I have a problem of breast engorgement should I be worried about infecting my child. Please help.