POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: Buckeyerob75 on March 12, 2012, 10:22:56 am
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This is my first posting- I found this website from an article in WebMD from an HIV expert so I thought I'd check it out.
I was diagnosised 1/4/12 as HIV+ but really haven't had a lot of time to deal with it head on. I was a caregiver for my dad that had lung and brain cancer until he passed January 28th. You can imagine how stressful finding out I had HIV and then dealing with a parent's death would be.
I have been off work since December on FMLA and honestly have no desire to go back. I find myself trying to find ways/excuses to stay away from work as I really dislike it. My biggest concern though is that my CD4/VL were pretty bad on the initial test. If I don't return obviously I'll have no health insurance to pay for all these tests and possibly drugs.
My infectious disease doc told me my numbers but honestly I don't think I heard him just due to the shock of the whole thing. I know the numbers showed I technically had AIDS- my CD4 was like 180 I think and the VL was 60,000 maybe. They just did the bloodwork for the genotyping and I'm supposed to go back in a month to get additional bloodwork to see if the numbers have naturally improved any without meds.
A couple things I'd like to hear from you all- my I.D. doc told me that there are 2 school of thought right now in the medical community. One is that you should go on meds immediately after being diagnosised and the other is that you should wait and only go on the meds after regular bloodwork shows the levels getting worse in your system maybe 5-10 years after infection. I can see both sides of the coin here but part of me wonders about if it's really necessary/practical to starts meds immediately if the counts return to normal levels on their own?
I had the rash on the back of the arms, the fevers, nightsweats, etc but also I'm still having nausea in the mornings, chills at night, and nightsweats from time to time. I keep reading ARS symptoms go away after like 3 weeks but I'm still having what appears to be ARS symptoms now 2+ months later. I also still have diarrhea and stomach issues which I certainly thought would be resolved by now. I have been eating better actually so I would think it would have started to clear by now too.
As far as sharing my dilemma I have told a couple close friends that have been extremely supportive. I don't think I'll tell my family anytime soon, if ever, as we're not especially close anyway so I just don't see the point. Since I'm still feeling the effects of my dad's death I can't say I'm still really dealing with the HIV diagnosis very well but just taking it a day at a time.
Thanks for reading- I'm sure I'll post more when I figure out a little more of what's going on with me lol
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Hi Rob
I take it you're from Ohio? Welcome! :)
I'm sorry you've joined us but I'm glad you're here all the same.
After this amount of time your symptoms are not related to ARS. That shit is well over for you. Whatever is making you ill, it's not acute HIV infection.
The most important thing you have to understand right now is that there is no hurry. Blood test results have a tendency to bounce around and we don't put much stock in single sets of numbers.
Rather we look at trends over time. Several sets of bloods over a number of months will give you an idea what's going on.
Our Lessons (http://www.aidsmeds.com/articles/Introduction_4702.shtml) are a good place to start. I'd recommend you check them out, if you've not already.
Once again, welcome!
MtD
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The most important thing you have to understand right now is that there is no hurry. Blood test results have a tendency to bounce around and we don't put much stock in single sets of numbers.
I disagree. If you're diagnosed with <200 cd4 you certainly should "put much stock" into that single set of numbers, at least enough stock to begin taking Bactrim or some sort of PCP prophylactic.
Further, unless you're quite certain that your infection is recent -- meaning a negative test in the past year -- then it's more likely than not this unsavory state is a reality. At the same time 180 is not like having 8, but it's still not something to take lightly.
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I disagree. If you're diagnosed with <200 cd4 you certainly should "put much stock" into that single set of numbers, at least enough stock to begin taking Bactrim or some sort of PCP prophylactic.
Further, unless you're quite certain that your infection is recent -- meaning a negative test in the past year -- then it's more likely than not this unsavory state is a reality. At the same time 180 is not like having 8, but it's still not something to take lightly.
Without a percentage an absolute count of 180 could easily be above 200.
Let's not panic without a second set of numbers.
MtD
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Odd. I don't see where I indicated that he should panic. Being prudent isn't a form of panic. 180 or 220, I'd still take Bactrim. Call me conservative.
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Odd. I don't see where I indicated that he should panic. Being prudent isn't a form of panic. 180 or 220, I'd still take Bactrim. Call me conservative.
I didn't suggest Rob should take anything lightly.
But on the basis of a single set of numbers we can't really say what is happening. Seems to me from what Rob has reported so far his ID hasn't settled on a course of action either.
But those numbers aren't great. I still think a CD4 percentage would give us more to go on.
MtD
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There's also a 50% chance his actual numbers right now are lower than 180. I still maintain he should at least take Bactrim. I would. I wasn't suggesting rushing into AVR treatment plans.
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Thanks for the quick replies :)
I am on Bactrim and also found out I had syphillis. I just received my 3rd shot on Friday as my ass still hurts lol *OUCH*
I appreciate the concern over the CD4 counts- I was rather surprised how low it was but my infectious disease doc is wanting to take a wait and see approach instead of just jumping in with both feet. He said his biggest concern is starting something that isn't going to work just to reverse ourselves and do more damage than good.
I go back in a month for additional bloodwork and am hopeful the numbers will have improved on their own. I tested negative back in June 2011 so this is a new infection and he said he isn't at all surprised how the numbers are looking right now.
I'll keep you updated on any progress as I know if it. I'm still trying to figure out where to go for some support here in Columbus, Ohio. I'm working with the health department as they gave me the penecillin shots and seemed to have some good insight to local support.
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Thanks for the quick replies :)
I am on Bactrim and also found out I had syphillis. I just received my 3rd shot on Friday as my ass still hurts lol *OUCH*
I appreciate the concern over the CD4 counts- I was rather surprised how low it was but my infectious disease doc is wanting to take a wait and see approach instead of just jumping in with both feet. He said his biggest concern is starting something that isn't going to work just to reverse ourselves and do more damage than good.
I go back in a month for additional bloodwork and am hopeful the numbers will have improved on their own. I tested negative back in June 2011 so this is a new infection and he said he isn't at all surprised how the numbers are looking right now.
I'll keep you updated on any progress as I know if it. I'm still trying to figure out where to go for some support here in Columbus, Ohio. I'm working with the health department as they gave me the penecillin shots and seemed to have some good insight to local support.
Oy syphilis!
Has your ID mentioned the possibility of a lumbar puncture?
MtD
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Sounds good then, Rob.
I was diagnosed with similar numbers as yours but I'm doing fine now. As long as you are on Bactrim right now you have some wiggle room until you get your next numbers in. So relax and just make sure to go to your next appointment.
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Miss Philicia- I definitely plan on keeping all appointments and following the doc's advice!!
MtD- As far as a lumbar puncture no, he has not mentioned anything like that. Why would they do something like that??
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Miss Philicia- I definitely plan on keeping all appointments and following the doc's advice!!
MtD- As far as a lumbar puncture no, he has not mentioned anything like that. Why would they do something like that??
Syphilis is a funny old thing. It's a nasty disease at the best of times, but is easily treated with penicillin.
It can infect your brain and spinal cord. We call this neuro-syphilis. In people with normal cell mediated immunity (ie above 500 CD4 cells) this doesn't happen for many years but in immuno-compromised folks it can occur much more quickly.
For these reasons it's considered good clinical practice to arrange for a lumbar puncture in HIV positive folks who also have syphilis, no matter what their CD4 count might be.
Often HIV positive people need extended treatment for syphilis. Not just injections in the butt, but IV infusions performed in hospital.
If you have any doubts about this just do a search for "syphilis" in the forums.
MtD
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MtD- thanks for the info. I'll ask my ID about that when I call today. I had some other questions for them anyway.
He didn't mention it on my last visit so I'm not sure what he'll say... my syphillis titer is 1:4 so they said that felt that I had syphillis when I got HIV which was very recent.
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MtD- thanks for the info. I'll ask my ID about that when I call today. I had some other questions for them anyway.
He didn't mention it on my last visit so I'm not sure what he'll say... my syphillis titer is 1:4 so they said that felt that I had syphillis when I got HIV which was very recent.
1/4 certainly suggests a recent infection and with treatment you should expect to reach non-reactive within 3 months. But it may be that your titre hangs around 1/1 or even 1/2 for quite a while given your HIV status.
Like I said a lumbar puncture is considered good clinical practice for people with HIV who also have syphilis but if your ID decides it's not required then you shouldn't fret. You should always take the advice of your doctor over that offered on a website.
:)
MtD
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Thanks for the quick replies :)
I'll keep you updated on any progress as I know if it. I'm still trying to figure out where to go for some support here in Columbus, Ohio. I'm working with the health department as they gave me the penecillin shots and seemed to have some good insight to local support.
First, welcome to the forums. The CATF would be a great starting point for support. I live in the Buckeye Lake area and have to travel to the big city for any needed HIV/AIDS resources. Feel free to PM me if you need any specific details about local options. Surprisingly, there isn't much available.
http://www.catf.net/
Wolfie
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This is my first posting- I found this website from an article in WebMD from an HIV expert so I thought I'd check it out.
I was diagnosised 1/4/12 as HIV+ but really haven't had a lot of time to deal with it head on. I was a caregiver for my dad that had lung and brain cancer until he passed January 28th. You can imagine how stressful finding out I had HIV and then dealing with a parent's death would be.
I have been off work since December on FMLA and honestly have no desire to go back. I find myself trying to find ways/excuses to stay away from work as I really dislike it. My biggest concern though is that my CD4/VL were pretty bad on the initial test. If I don't return obviously I'll have no health insurance to pay for all these tests and possibly drugs.
I am so sorry of all this bad news in your life! I am very sorry for the loss of your father!
Of course you are a wreck.
Make sure you see your GP and or the ID for HIV and explain how much time you need from work and just put work on the back burner as much as you can possibly get away with. You should be able to get sick leave by a doctor writing a note. They shouldn't need to say exactly what it is.
I suggest second that you might see a counselor or therapist if at all possible in the next few days and tell them you want, or don't want, to save your job. I did this when I had a burnout / breakdown over a busted relationship. The shrink went into crisis mode and walked me through surviving the next few months, and saved my job. In fact, with meds, she had me back at work functioning more or less in a week. And ironed out all the kinks as the months wore on.
You can't think clearly about what you want professionally so don't burn your bridges. Just safely get as much time off as you can, and also decide if its really important you keep your job or not, and ask for support to do that. Unemployment would NOT be a good blow after the other recent blows. And maybe you like your job, normally, just not now that you're so stressed and shocked.
My infectious disease doc told me my numbers but honestly I don't think I heard him just due to the shock of the whole thing. I know the numbers showed I technically had AIDS- my CD4 was like 180 I think and the VL was 60,000 maybe. They just did the bloodwork for the genotyping and I'm supposed to go back in a month to get additional bloodwork to see if the numbers have naturally improved any without meds.
A couple things I'd like to hear from you all- my I.D. doc told me that there are 2 school of thought right now in the medical community. One is that you should go on meds immediately after being diagnosised and the other is that you should wait and only go on the meds after regular bloodwork shows the levels getting worse in your system maybe 5-10 years after infection.
Those are TWO schools of thought but this is not binary living. Meaning there are even other routes possible. Many people don't opt for treatment at diagnosis but still do not, finally, wait for the lowest recommended threshold of immune health before starting. There are infinite reasons and timespans for starting HAART. You will find the right one for you when you are ready.
I can see both sides of the coin here but part of me wonders about if it's really necessary/practical to starts meds immediately if the counts return to normal levels on their own?
I had the rash on the back of the arms, the fevers, nightsweats, etc but also I'm still having nausea in the mornings, chills at night, and nightsweats from time to time. I keep reading ARS symptoms go away after like 3 weeks but I'm still having what appears to be ARS symptoms now 2+ months later. I also still have diarrhea and stomach issues which I certainly thought would be resolved by now. I have been eating better actually so I would think it would have started to clear by now too.
As far as sharing my dilemma I have told a couple close friends that have been extremely supportive. I don't think I'll tell my family anytime soon, if ever, as we're not especially close anyway so I just don't see the point. Since I'm still feeling the effects of my dad's death I can't say I'm still really dealing with the HIV diagnosis very well but just taking it a day at a time.
Thanks for reading- I'm sure I'll post more when I figure out a little more of what's going on with me lol
Yes its hard to tell the exact causes of all your malaise. Death of a parent. Shock of a diagnosis. Oh, and HIV infection.
You sure it is a recent infection? Or is it just the diagnosis that is recent?
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Hey Mecch- thanks for your reply.
My last negative test result was June 2011 so it's definitely recent.
I'm not sure if I should just take more FMLA time which is unpaid or if I should try to go on short term disability which is paid. I'm going to talk with my primary care doc about this.
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Hi Rob, welcome to our forums. My condolences for the loss of your father.
As far as your time away from work is concerned, you would probably be better off opening a short term disability case. The FMLA administrator for your employer should be able to provide you with the proper steps or the numbers to call so that you can start the process. Some employers automatically turn an extended FMLA absence into a STD/benefits case after you have been away for more than nine days; check to see if that is your situation. Also, keep in mind that while FMLA is limited to 450 hours, the STD case would cover you for up to one year if necessary (some additional documentation may be needed in the future to validate your case). I am not saying that you're going to need that much time, but it is good to consider all options. It is preferable that you keep your benefits, including any health care, while you adjust to your status and deal with the syphilis treatment. Don't rush into any decisions for the time being.
Wishing you the best,
Da Rev.
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I was diagnosised 1/4/12 as HIV+ but really haven't had a lot of time to deal with it head on. I was a caregiver for my dad that had lung and brain cancer until he passed January 28th. You can imagine how stressful finding out I had HIV and then dealing with a parent's death would be.
I have been off work since December on FMLA and honestly have no desire to go back. I find myself trying to find ways/excuses to stay away from work as I really dislike it.
Hi Buckeyerob75,
Firstly, welcome, and my sincere condolences on your loss. You have already had good advice from some of the wisest members of this forum, and you will find that there is a wealth of information and support available to you here. Like you, my diagnosis came just days before my mother died of cancer, and while I was caring for my father who had Alzheimer's, so I can well imagine what you have been through.
I can't add anything to the practical wisdom the other posters have offered, but I was struck by how just many incredibly stressful things have happened to you in such a short space of time, all of which may well feel like different kinds of bereavement, and all of which must be taking their toll of you. Plus, you are in a job you dislike. I'm wondering what kind of support you are getting at this time, and how you are dealing with everything that has happened.
I hope that you will keep us posted as to how things are going, and that you will find, as I did, that you are not alone in this.
Kind thoughts,
M.
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Hi MarkB- I appreciate the posting.
I am actually the youngest of a large family but was the only one here taking care of my dad. A couple of the others have helped me while my dad was alive so I could get away and take breaks. I was considered "the rock" by at least a few of the family so I was kind of the backbone of everything. Nothing like adding a little more pressure right? lol
I have survived cancer and I'll survive this... just a pain in the ass. To answer your question though I really ought to get some more support. Right now I haven't been to counseling or anything and I've only told a couple of my closest friends. Tough to get local support when only a couple people know and I think the shame of getting it is keeping me quiet. I plan on finding a support group soon while I'm off work and I hope that will help normalize things a bit. I've never been a mushy crying kind of guy so I'm not sure how I'll handle being in a group. I live in an area where not only do you NOT want to be out, you don't want anybody knowing you have HIV. It's not some liberal big ass city but out in the sticks (for now).
It sound as if you're seen your share of heartbreak as well and I'm sorry to hear that. My mom is currently in a nursing home as she has some slight dementia issues but is really there as she is bedridden and I was unable to care for her at home myself. I know what Alzheimer's and dementia look like and it's ugly. I can't imagine having to care for both parents with such severe issues at the same time. You must be a very strong person as well. ;)
Thanks again for the note.