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Some months ago I posted on this forum about the serious side-effects I suffered while trying two new regimens over the course of a year - a year of hell. I said that the side-effects were severe insomnia and itchiness, and that these were so bad that I eventually had to return to my previous regimen despite it not being the best regimen for my kidneys. However, while insomnia and itchiness is no longer nightly for me, I STILL suffer from both now and then, perhaps once a week. Last night, for… read more
I'm not sure where you live but please find yourself a progressive HIV Doctor Who will nip this in the butt for you once and for all. Something in the medication you are on now is causing this.
@A myHIVteam Member, very wise, well done! I'm very pleased and relieved to hear that. Meanwhile, best wishes for the present, and for your on-going health situation, and please keep us updated. It's been very valuable to me to find you.
@A myHIVteam Member, I've just had a look at your profile page and seen how you have spent a lot of time at your hospital's emergency department. I already knew this happens to some HIV people. It happened to an HIV friend of mine, who eventually yearned to be "let go". He suffered badly for several months, then had a gastric rupture, which was his "lucky chance" to leave. He said no to being rushed to intensive care and so died 10 minutes later. If I had been in his shoes I would have approached people who could have helped me with a quick and painless medically-assisted death many months earlier. In the USA you have a strong network of people who support medically-assisted dying. You could consider making contact with them at some point.
Best wishes.
Did muscle biopsy's both legs and arms and three full body EMG's blood work every week u have 8 doctor's 4 i see bimonthly 3 monthy 1 weekly
@A myHIVteam Member, it sounds like you suffer from SEVERE peripheral neuropathy. I sympathise completely. It's awful.
Forgive me checking, please, but have you really strongly impressed upon your doctor(s) how severe this condition is FOR YOU?
I am asking you this because I have learnt that sometimes we really have to "BANG the drum" to loudly communicate how bad something is, so that a doctor will finally "get the message" and then take action.
During my 23 years with HIV I have twice had to go into the clinic and "put on a performance" to drive home the message that I have been at the end of my tether. And it worked. They finally sat up and took notice and did the necessary.
We must not suffer in silence.
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