Intro STLPOS17 - Medical Care

[STLPOS17]

I don't know where I should post this, but here goes... Has anyone else felt as if the health care community uses us as a means for insurance payments? I don't know where to find a good doctor. I live in the Midwest and the healthcare provider in the area acts as if they are some mythical ethos of Godliness. The reality is that they ignored my request for an HIV test for several months, massively violated my HIPPA rights with my employer, tested me and let me leave the hospital for months without telling me I was positive.

Months later a nurse retested me and apologized for what happened. Now my social worker acts like I'm going to the best of the best for health care but I simply have no trust in the schmucks who are treating me. Yesterday I had to listen to a neurologist regale me of the early days of the epidemic before HAART. Sorry, but the dude is smoking something. Had his hospital team not told me I was healthy, I wouldn't have presented months later with stage 3 AIDS and I might not have these neurological problems. His suggestion that the medicine just needs more time to work its way into the brain sounds encouraging, though it goes against some of the stuff I've found online. But I just don't have any TRUST in these people. I wish I knew where to find a doctor I might believe, I don't think it even matters if the doctors I'm working with now are competent nor kind; I always feel like I've been used after leaving the office.

[Jim]

Hiya,

Sorry to hear about the diagnosis and that the trust has broken down with your current medical care team. I hope you can find a different clinic for care in the future.

massively violated my HIPPA rights with my employer

So the hospital informed your employer of your HIV status?

Now my social worker acts like I'm going to the best of the best for health care but I simply have no trust in the schmucks who are treating me. Yesterday I had to listen to a neurologist regale me of the early days of the epidemic before HAART. Sorry, but the dude is smoking something. Had his hospital team not told me I was healthy, I wouldn't have presented months later with stage 3 AIDS and I might not have these neurological problems. His suggestion that the medicine just needs more time to work its way into the brain sounds encouraging, though it goes against some of the stuff I've found online. But I just don't have any TRUST in these people. I wish I knew where to find a doctor I might believe, I don't think it even matters if the doctors I'm working with now are competent nor kind; I always feel like I've been used after leaving the office.

A few questions: What were your initial lab results, VL and CD4? Have there been any improvements since? What medications are you taking? What neurological conditions have been diagnosed, and when did they start?

Best, Jim.

[STLPOS17]

Jim,

I sent you an email. I'm on Biktarvy now, my VL dropped dramatically (normal) and my CD4 count rose far more than is normal. I have pressure in my brain, balance issues, leg weakness, hearing and vision loss, memory loss.

I also have huge lymphnodes in my armpits and throat. The hospital is concerned it may be lymphoma but they have yet to act on this. Burning sensation in my throat and mouth.

But still better than earlier this year. I just feel this health care organization is pretty pathetic. I had to request an HIV test 4 times before they finally tested me. Then, I tested positive and they forgot to tell me. Then, months later, they try to act like this was something new and when I called BS, the nurse apologized for what had happened.

[Tonny2]

          ojo.            Hello there!… I’m sorry to hear about your diagnosis, but I have some questions for you:

VL, normal?, what do you mean?

Cd4, normal, what do you mean?. Where are your initial numbers and what are your numbers now?.

I am from the Miss West too so please tell me where you are from so I don’t go to the clinic.

How to brain symptoms, did the neurologist gave you a diagnosis?.


In any event, I’m sorry that you had to go through this, but you are not alone, we are here for you. Just hang in there. After all now, you had a diagnosis now you treat it. I hope that soon you start to feel better… Hugs.

[STLPOS17]

Hi Tonny 2,

I don't know what my numbers were in April when I was really sick. But in August, my VL was 776,000 copies/ml and my CD4 was 70.

My VL went down to 101 and my CD4 went up to 384 about 5 weeks later.

Brain: Problems with my legs, balance issues, loss of vision, loss of hearing, pressure in my brain. Forgetfulness, sense of being lost in my own home. Sleeplessness. I am doing better now, but these symptoms lasted a long time. I have some things on my MRI scan but the neurologist said he thinks the medicine will allow my body to heal - which is good news. I have lymphoma, but they also think that should improve.

I won't mention names, but I was going to a major university hospital system linked with a second tier Ivy League university in Saint Louis. Buh, buh, buh, buh...

I joined a small clinic nearby yesterday and said my goodbyes to that research university.

[STLPOS17]

The hospital's name rhymes with 'harms' which seems appropriate.