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Feeling lost and confused

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Cottoncandi:
Does anyone have any experience with multi drug resistant superbug? This is how the doctors have described my mil status. She's been taken off of everything and released to hospice. She came very close to death and bounced back. Now she's running around like a teenager. While I'm happy for the quality she seems to be given, I'm very concerned about what she's exposing herself to. In June her counts were UD and cd4 of 30. She was still on haart with those numbers . She also had 3 blood transfusions. She's been around a lot of sick people and done just fine. I just don't know what to expect. Any thoughts?

mecch:
Your "mil"?  American English here so I'm sorry if I don't understand who you are talking about?

Also, your friend has "multi-drug resistant" HIV?  Or a bacterial infection? 

In the US, people are sent to "hospice" on the primary criteria that doctors consider the illness terminal.  Occasionally people "bounce back", but terminal means terminal - a matter of time.

There was scaremongering based on ignorance, about multi-drug resistant untreatable HIV in the mid 2000's.  This proved to be a false scare, those strains were treatable.

I am wondering if you haven't provided enough information about what is going on here.  If someone has undetectable viral load on HIV treatment, in JUNE, I'm not sure that same person can subsequently have "multi-drug resistant" untreatable HIV. 

May I ask - is it possible your friend is HIV+ but has other serious and terminal conditions, infections? 

Cottoncandi:
Mil means mother in law so sorry. She contracted HIV sometime in the late 80s. She's somewhat secretive about her status until her husband left her around 07 and we found out of her status . Since then we've had to make sure she had her meds and kept her appointments because she just wanted it all to go away understandabley. She had cryptococcosis and almost died in 99. This is when she was diagnosed with aids status and began haart, I believe. (We were kept from this) the past few years after becoming resistant to pretty much everything in April she had some brain swelling after treatment for a brain tumor. She was put on steroids and sent home. Downward spiral her bone marrow began to fail her. Three transfusions later they told us this was it. Nothing more they could do. The numbers I have were the last ones drawn. She was taken off all meds and released to hospice. They don't draw labs so I have no idea where she's at with vl or cd4 . But since she's come off everything she's doing really well hence "bounced back" still no treatment. She has no infections that we are aware of. They did find a tumor on her kidney while in hospital in June. They told us it was probably cancer but she would survive to even seek treatment. Once doctors release you they don't se to want to talk to you! Hospice here hasn't had too many aids patients. They are as lost as we are . I'm happy for the quality she's been given but I'm scared of what's to come

wolfter:
I'm not sure where you're located, but I've never heard of stopping HIV meds because of other terminal conditions.  I too developed a brain mass (tumor) because of cryptococcal meningitis and was treated aggressively. 

I wonder if she isn't hiding some pertinent information from you all.  Did she or the doctors decide to stop treatment?  Perhaps it's time for a heart to heart with her and discover the truth.

best wishes
wolfie

Cottoncandi:
At one point the docs wouldn't even see her unless we were with her. I was usually the one. This is what they've told me. She thinks she's off her meds because she's doing good. When we try to talk with her it turns aweful. I even told the docs that I had a really hard time believing there were no more meds. They showed me the genotype tests. She resistant to entire classes of drugs. I've talked with other id doctors, even others hemotologists nothing, I'm guessing this really doesn't happen that often?

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