POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: BUZZCUTT on November 16, 2008, 12:01:05 pm
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Hello Everyone!
First time here posting. I came across your great web site when I was reading about my meds. I was hospitalized in July of 2007 with PCP and found out that I have AIDS - my T-Cell was 11 - I am currently on Viramune and Stutiva and my T-Cells are 285 - and the VL is undetectable. My questions is does this mean I have full blown AIDS? and if your T-Cells keep going up does the diagnosis still stay the same or does it go to HIV? every time I go to the doctor and he sends me for lab work the dx is still the same. I was on Combvir and Truvada but started having liver problems - I get so depressed some days that I don't want to get out of bed - I work full time and some days my body cannot function - I tend to get skin infections on my face :( and body aches , numbness, bloating, diarrhea - i don't have much of an appetite but have gained weight - i was on prednisone and bactrim for over a year - sorry to ask so many questions but I don't have anyone i can talk too and feel so ashamed of my diagnosis. I do not go to a Infections Disease DR - my Internal Medicine Physician is treating me - he told me he does not have much experience with Aids/HIV and only has one other patient that he treats for this condition. The ID doctors are few and far in central Florida - Please anybody that has been Thur this, help me see the light at the end of the tunnel
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On a statistical/technical level you are classified as having AIDS if at any time since diagnosis your cd4 count has gone below 200. As a practical issue, at this current time you do not have "full blown AIDS" (sorry, but that's a term that negative people use -- there is no "full blown" clinical term).
While I don't live in Florida I have to say that this is not a state with a low number of HIV cases, nor is central Florida like living in Pensacola. You should have more resources there than you seem to think -- I'd recommend doing more research and finding an experienced HIV specialist considering at what point in disease progression you were diagnosed. Also, it's very, very important to address your mental health and outlook seeing as how you are admittedly having "shame" issues with HIV -- this is not healthy for you and will get worse if you don't address it now. If you can locate a local AIDS service organization you should be able to find a support group and/or one-on-one counseling, as well they should be able to assist you in finding a more experienced doctor.
Perhaps posting what central Florida metropolitan area you are closest to would help other board members here to assist you in finding an AIDS service orgaization (also called ASO's).
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Thank you Philly for the information - i did not know about the full blown term - the diagnosis of aids is bad enough without adding full blown to it - i recently started talking to a therapist - it was a hard step- i am currently taking anti depressant meds, tranquilizers and a few different kinds of sleeping meds. I just keep feeling like i am going to die. I will do some research to find so ASO's
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Look honey, you're not going to die. HIV treatment is worlds better than it was a decade ago, as are the meds. By your own admission you've numerically improved since your diagnosis -- you need to relax and give this all some time. Yeah, I'd focus on the therapy issues and try and supplement it with a support group. You sound alone and that can lead to isolating yourself. It's all fine and good to post here on aidsmeds -- but I'd still encourage you to supplement things in "real life" with a group.
11 is a very low number to begin your diagnosis with -- but going up to 285 in one year is actually a very good situation to be in all things considered. It should not surprise you that having been diagnosed with those numbers that you'd be experience some of the side effects that you describe, but seriously a more experienced HIV doctor would assist you in dealing with these effects. For example, what has he/she said about your skin issues? My guess would be that this is seborrheic dermatitis, which is very common with HIV especially at your cd4 count. There are topical ointments that can be prescribed to help with this, but your doctor should know this.
Diarrhea/bloating are common because HIV largely infects your GI tract. What has you doctor suggested to deal with this (if anything)? Are you communicating all of these things with your doctor? Also, anti-depressants/tranquilizers and sleepting meds -- you're taking all three at once? That seems like kind of a lot to me, so no wonder you feel fatigue issues. I've taken all of this myself, but at some point you're going to need to ween yourself off much of it if you expect any quality of life -- but yeah they can help short term. I'd recommend a therapist that goes the cognitive behavioral therapy route as such techniques will allow you to deal more effectively long term with depression and/or anxiety issues without using so many medications.
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Hi Buzz, welcome to the forum.
Are you certain you're on Sustiva and Viramune? That isn't a recommended combo as 1) it's only two drugs and 2) it's two drugs from the same class. You need to be on at least three drugs from two different classes. Same thing with Combivir and Truvada. With this combo, you were on four drugs but all from the same class.
I'm thinking you might have started on Sustiva and Combivir and were switched to Viramune and Truvada. Can you clarify?
If you really are on the Sustiva/Viramune combo, you need to find a different doctor, pronto!
Ann
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Oh, good catch Ann -- yeah, don't want to be on those two meds together. Hopefully that's not what Buzzcut meant to write.
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Hi Buzzcut
Welcome to the forums.
It's good to hear that you have made such a strong recovery so far. I was in a similar position to you a year earlier (hospitalized in 2006 with PCP,thrush and a Tcell count of 40). It's a long and a tough way back, but lots of us here have been in your shoes.
I agree with Phlly and Ann that you might really benefit from talking in person with some people at an AIDS Service Organization. If you click here: http://directory.poz.com/ you should get to a tool where you can enter your zipcode and get a list of ASO's near you. If the link doesn't work, just click on Home and then click on Survival Tools.
In particular, you might want to talk to them about access to Infectious Disease specialists locally. Even if you use an internist for routine health care, it's a good idea to establish a relationship with an ID doc who handles at least 50 patients. A good case manager at an ASO can talk to you about what clinics and other services are available to you in your local area now and the services available if your needs should change.
Good luck and hope to hear more from you.
Assurbanipal
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Hi Ann,
Thank you for your response - I was originally on combivir and sustive since i got out of the hospital - then the doctor switched me to truvada and sustiva - then switched to viracept and sustiva and now i am currently taking viramune and sustiva.
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Hi Assurbanipal
Thank you for the refrence tool - i checked and it looks like most of the doctors and ASO's are 50 to 100 miles from me - i will check some of them out- Thank you so much
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Hi Philly,
Thanks for the reasurance that I am not going to die...yet :)
The skin infections I get on my face the doctor says it is impetigo and gives me ointment for it - and sometimes anitbiotics - they are reacurring and the topical ointment does not work fast enough for me - i can tell when i am going to get one because my skin starts to itch - then it gets this yellowy crust on it and bleeds - its a pain to shave which is mandatory for work - i usually get them on my chin or jaw line and neck they are about the size of a dime. I dont know how it can be impetigo because I am a fanatic about personal hygiene - but thats what the doc says they are - who knows - maybe just another side effect from the drugs or just from stress - the doctor says florida climate plays a role in skin conditions - i have had rashes on my feet and stomach and side also suffer from colitis - it feels like my body is aging faster then i am.
Thanks for lisening to me
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Hey Buzzcut
I saw you had a thread on disability too over in Living WITH. You know ... it might be worthwhile to talk to a caseworker at a local ASO about exactly how and whether disability might work for you. Disability does not have to be an all or nothing permanent thing. Many employers have temporary disability programs and states also provide some support.
Generally the way disability works is that support tends to be relatively more generous for shorter durations and then grade down to a permanent level if you are out for six months to a year. The programs vary by employer and by state. You might want to see if a caseworker at the ASO can help you think through whether this could work and what would happen if you did or didn't get better after a defined period.
So if you need to take a month or two off to deal with some of the issues you outlined up above it may be feasible -- and don't worry about the pejorative terms, do what you NEED to do.
Best wishes
A
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Hi A,
Thank you so much - I am new to Forums and posting and such - I thought i had to go to different threads if i had different questions.
I will find a ASO and get a case worker - i guess part of me is still in denial - i dont even talk about this with my partner - although he is very supportive, i just feel uncomfortable talking about it to him - he does not know what his status is and does not want to go to the doctor - i have not been sexually active for almost two years - and i am think he has not been either. and ever since i have been diagnosed i have no desire to have sex anymore-
Thanks for you help
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Buzzcut, I can't think of anything to add to what philly and others have told you. You stand a good chance, even with being diagnosed with a lowCD4 count, of living until you are eighty or ninety, bus/train accidents notwithstanding.
Sadly, you have to take a crash course in HIV, its mechanics, and its treatment. In addition, hooking up with a local ASO is a great idea. I believe Ann can provide you with a link which allows you to search by area code, to find the closest to where you live.
An important thing to remember is that you are not alone, and that treatment today is light years ahead of where it was less than a decade ago. With due diligence on your part, and adherence to your drug regimen, you can restore your health and likely not have to worry about SSDI (Social security disability) for decades to come.
If your health is currently, temporarily compromised, you might want to consider looking into your employer's short term disability or family leave options, and take some time to get yourself stronger.
And to make a comment about the shame issue, noone will deny the stigma associated with HIV, felt and perpetuated not only by the society at large, but to a lessor degree within the HIV community as well. Your skin will have to toughen in order to cope with that, and if you manage that without losing your compassion and humanity, you have come far in the process of surviving this thing.
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Thank you Jkin,
It really helps to know so many people care and understand - I have good days and bad days - the bad days I have Family Medical Leave that I can take with no questions asked. It just seams each day I have a different ache, pain or ailment - lol
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Hi Philly,
My doctor gives me something which the names escapes me at the moment to move food thru my intestanal track and also gives me Protonics for indigestion and vomiting.
I current take
Viramune 2x day
Sustiva 1 x day
Prozac 60mg daily
Librium 25 mg daily at night
Ambien 10 mg at night
Klonapin 4 mg at night
Chyloral Hydrate 1000 mg at night
I have had a history of insomnia and dpression before i was diagnosed -and have been on these meds before my dx except for Librium which was prescribe after dx for anxiety which usually happens at night.
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Hello Buzzcut.
You have gotten some great advice and explanations to your queries and I just wanted to add my thoughts. My name is Joe and I have been poz for 24 years and one of the biggest hurdle I always see, with the newly infected, is this sense that somehow you deserve HIV. You say you are ashamed of your diagnosis and I urge you to reject those feelings. You are HIV positive and nothing more. You have a disease and the sooner you accept that fact, the sooner you will adjust to your diagnosis. You did nothing to deserve becoming infected with HIV. None of us did, but for many of us, we played some role in becoming infected and that is where the real struggle begins.
If you plan to adjust to your diagnosis and you want to live a full life, then you are going to have to forgive yourself, for whatever role you may have had, in becoming poz. You, my friend, must learn to become your own best friend and best friends, always forgive mistakes. Coming from a religious upbringing and very conservative parents, I can understand the influences you may feel, to label yourself as unworthy, however, I urge you to reject such characterizations. If you believe you somehow contributed to your infection, I ask that you consider the reality of that fact.
I helped to cause my infection, for numerous reasons, but all of it is a result of mistakes I made and nothing more. Granted the repercussions of those mistakes is profound, yet the fact remains, that they were mistakes I made. Eventually I began to understand the damage I was doing, by denigrating myself over simple mistakes. My advice to you is simple, yet far reaching. Learn to forgive yourself your foibles and use your energy to reach your life goals. We are humans and by our very nature, we make mistakes, hopefully learn from them, we forgive and we move forward.
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Hi Philly,
My doctor gives me something which the names escapes me at the moment to move food thru my intestanal track and also gives me Protonics for indigestion and vomiting.
I current take
Viramune 2x day
Sustiva 1 x day
Prozac 60mg daily
Librium 25 mg daily at night
Ambien 10 mg at night
Klonapin 4 mg at night
Chyloral Hydrate 1000 mg at night
I have had a history of insomnia and dpression before i was diagnosed -and have been on these meds before my dx except for Librium which was prescribe after dx for anxiety which usually happens at night.
You still shouldn't be taking a regimen of Viramune and Sustiva together -- that's two NNRTIs. That makes no sense -- please query your doctor why he's doing this.
And 4 mg of Klonopin plus Chlordiazepoxide is WAY too much of the benzodiazepine class in my opinion. No wonder you're feeling tired, not to mention physically addicted. Add in the ambien and chloral hydrate and that's enough to start pulling a Heath Ledger. Have you sought a second opinion on all of this since your diagnosis? Is your prescribing psychiatrist coordinating this treatment with your HIV doctor?
You also mentioned liver issues with Combivir or Truvada, but do you also realize that most benzodiazepine class drug (as with Klonopin or Librium) are harsh on the liver? I don't wish to sound alarmist but this all is sending up red flags for me.
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Hey Joe!
Thank you for your response - you hit the nail on the head - I was raised in a strict Mormon household and often feel unworthy and guilty - i too made a mistake - i wish i could go back into time and change it but i cannot - I am trying to cope with this the best way I can - i tend to block it out and try to forget about - it has taken me a year to just start to talk about it - I really appreciate your kind words it is helping me to look at my illness in a different way.
Always and Forever
Buzz
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Hey Philly,
I will talk to my doctor about the same classifications of antiviral meds - I am not sure i understand about NNRTI's even thou i read on them it sometimes does not make any sense - i have a question why can you not take both viramune and sustiva? I dont understand - i keep reading on them and it all seems Greek to me after a while - please help me better understand.
As for the other drugs I am totally addicted to them - i have been on them for such a long time - i dont think i could manage without them - my liver is probably shot to sh*t - but i can understand your concern - right now i want to find out what HIV meds i should be taking and work on the other at a later date-
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Hey Buzz,
I am glad you found some comfort in my words and you seem to understand the difference in seeking change, where you can, and accepting what is, where you have no control. Stress kills and when combined with HIV and depression it can make for formidable challenges. I urge you to read my thread, Depression in the Mental Health forum and I believe you will find yourself there, as seen through my life. Like Philly, I am concerned about your depression drugs, because you do not need to medicate yourself into oblivion to relieve your depression.
I am disabled, not because I am poz, but rather because I suffer from depression. I have lived with depression for forty years and periodically I review my medications, to be assured that I am taking the absolute minimum to control my depression. For the past four years I have been taking the following:
400mg Wellbutrin SR (200mg at 9 a.m. the other at 3 p.m.)
40mg Citalopram (9 a.m.)
30mg Methylphenidate (Ridlin) (10mg at 9 a.m., 12 p.m. and 4 p.m.)
Up to 150mg Trazadone (one hour before sleep)
These medications are very kind to the liver and the only downside is that I cannot drink alcohol. I believe you need to see both a psychiatrist, to review your psych meds and a HIV specialist, to review all of your drugs in combination. You say you are addicted to your meds and that is not treatment, rather it is addiction. There are dozens of effective psych drugs and for me, my combination was a result of trial and error, but my persistence paid off. I control my depression using drugs that work for me and do not put an unreasonable burden on my organs.
You are no longer just a person with depression and as such, you need to coordinate your care, with your care providers. Having lived in Fort Lauderdale, I know how difficult it is to get decent care, in the northern part of the state, but there are sources that you can contact to get the support you need. Another ability that you will need to cultivate, is that of advocating for yourself. You know what you need, so now you need to work on finding the resources you need, to support your life with depression and HIV.
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Hi . . Welcome. Your doc needs to read the US HIV treament guidelines., your combo is way not standard . . especially if you wanna be kind to your liver. I echo what everyone else says., you.'s not gonna die any time soon. Give your body and soul some time. You have been real ill. You will feel better - matt
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Hi . . Welcome. Your doc needs to read the US HIV treament guidelines., your combo is way not standard . . especially if you wanna be kind to your liver. I echo what everyone else says., you.'s not gonna die any time soon. Give your body and soul some time. You have been real ill. You will feel better - matt
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Hey Philly,
I will talk to my doctor about the same classifications of antiviral meds - I am not sure i understand about NNRTI's even thou i read on them it sometimes does not make any sense - i have a question why can you not take both viramune and sustiva? I dont understand - i keep reading on them and it all seems Greek to me after a while - please help me better understand.
As for the other drugs I am totally addicted to them - i have been on them for such a long time - i dont think i could manage without them - my liver is probably shot to sh*t - but i can understand your concern - right now i want to find out what HIV meds i should be taking and work on the other at a later date-
Hey buzzy :) Yes, I agree -- don't stress out on the benzo withdrawal yet but yes deal with the appropriate HIV med combo. The important thing to know is that you don't make a regimen out of two NNRTI's, but if you've had liver problems it's going to be an extra complication in formulating a regimen as normally they'd probably put you on Atripla (which is just Sustiva + Truvada). I think when you're on a NNRTI you should combine that with two NRTIs.
I know that in your first year this is all quite confusing, and really nobody expects you to know it but you should be familiar enough with the basics so that you can tell if your doctor is up to par. You stated in your first post that your doctor has little experience -- seriously, having only one other HIV patient is just not going to do it. I think the first thing I'd do is locate a new doctor, making sure it's an Infectious Disease doctor with a sizable HIV patient base, and do this by obtaining recommendations from your local AIDS service organization.
Actually maybe before locating a new doctor I'd insist on a proper HIV regimen from your current doctor. The last thing you want is to begin treatment with 11 cd4s and then not be given the correct med combo. As newt just stated have your doctor go by the latest HIV treatment guidelines.
I think most people here will hesitate to say "take this combo" if only because you've brought up these liver issues. But this link on aidsmeds will perhaps help you in seeing what we're talking about and why the combo you are on is not at all standard preferred treatment:
http://www.aidsmeds.com/articles/WhenToStart_4759.shtml
In fact, now that I ponder this I don't even understand why a doctor would put you on even Sustiva after you've related all of the psychiatric issues -- did you inform your medical doctor of those non-HIV meds you're on and your pre-HIV psychiatric diagnosis? Not to mention that folks with liver issues shouldn't be on Viramune either.
Actually Truvada should be OK for liver issues, it's kidney issues you don't take that with. I don't see why your doctor doesn't put you on something like Reyataz + Truvada. Also I will assume that you had a geno/phenotype test when you were diagnosed and do not have any mutations. If there were any resistance profiles then that needs to be discussed as well.
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Hello Buzzcut,
I am from just north ( a couple miles) of the Clearwater, Florida area. If you are near this area, contact me, by sending me a personal message, and I can refer you to the doctor that I am seeing, or possibly some of the ASO's in this area. But we do need to know where you are in central Florida, so that myself or someone else can get you properly situated, with a knowledgable doctor.
I haven't had time to read all your posts, I just woke up myself and am going to get ready for work shortly. I also started off on meds with a very low t-cell count five years ago. ( 16, t-cells) So I understand how rough things are right now.
I certainly don't understand, about being on Viramune and Sustiva at the same time. It's one or the other. There's an awful lot of confusion here, and things need to be sorted out.
Private message me if you like, there are plenty others from Florida, that may be able to help you in some way. I will be back on line around 7:15 Tuesday morning.
--Ray
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Thanks everybody for your posts they are helping me cope
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Where can I find a copy of the US HIV treatment guide lines?
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I agree with Philly!
You are going to be fine....don't loose your faith and remember that lots of this full blown crap is a negative way to present what this disease really is. meds are helping you and proof of that is the fact that your Tcells have increase.
Look honey, you're not going to die. HIV treatment is worlds better than it was a decade ago, as are the meds. By your own admission you've numerically improved since your diagnosis -- you need to relax and give this all some time. Yeah, I'd focus on the therapy issues and try and supplement it with a support group. You sound alone and that can lead to isolating yourself. It's all fine and good to post here on aidsmeds -- but I'd still encourage you to supplement things in "real life" with a group.
11 is a very low number to begin your diagnosis with -- but going up to 285 in one year is actually a very good situation to be in all things considered. It should not surprise you that having been diagnosed with those numbers that you'd be experience some of the side effects that you describe, but seriously a more experienced HIV doctor would assist you in dealing with these effects. For example, what has he/she said about your skin issues? My guess would be that this is seborrheic dermatitis, which is very common with HIV especially at your cd4 count. There are topical ointments that can be prescribed to help with this, but your doctor should know this.
Diarrhea/bloating are common because HIV largely infects your GI tract. What has you doctor suggested to deal with this (if anything)? Are you communicating all of these things with your doctor? Also, anti-depressants/tranquilizers and sleepting meds -- you're taking all three at once? That seems like kind of a lot to me, so no wonder you feel fatigue issues. I've taken all of this myself, but at some point you're going to need to ween yourself off much of it if you expect any quality of life -- but yeah they can help short term. I'd recommend a therapist that goes the cognitive behavioral therapy route as such techniques will allow you to deal more effectively long term with depression and/or anxiety issues without using so many medications.
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Just a quickie to give both you Buzz and Eduardo the low down on HIV vs. Full Blown AIDS.
When we get the bug, we become HIV+, when our immune system fails and our CD4s drop below 200, OR we get an Opportunistic infection from our depleated immune system, then we go to AIDS, or as we called it way back in the day; Full Blown AIDS. It isn't really a derogatory term, but one that was used by ASOs, doctors, hospitals, ourselves, the IRS and case workers to give an idea just how far each one of our cases had progressed. This disease is a progression in time, so therefore there needs to be some way to break it all down without delving into the particulars of private medical information. These terms "seem" to have some negative conotation, but that has come since the beginning of the times when there was nothing but confusion running rampant.
It is vitally important to our Mental Health that we not let these terms, become anything negative, because they are not. I have never thought of any of the technical terms we have had to create with HIV as negative or positive in nature; only terms. We have to really watch ourselves and not accept any of the negative crap that is thrown at us as a group, and in doing so, we keep the HIV in the place it should be, and that is simply a viral protein that lives in our bodies.
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Where can I find a copy of the US HIV treatment guide lines?
Buzz, try here (It's a PDF file):
http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf
See pages 20 through 50 in particular. You might want to print some of those pages off for your doctor - along with emailing him a link to the PDF file or writing down the URL and giving it to him.
Good luck - and please, take care of this as soon as possible. You're risking resistance to a whole class of drugs.
Ann
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Good luck - and please, take care of this as soon as possible. You're risking resistance to a whole class of drugs.
Ann
Buzz,
I just sent you a private message, quoting Ann above, and tried to answer some of your questions. You need to talk with your doctor about this tomorrow.
I also received your private message, and responded and you right, there isn't much in your area of Florida dealing with HIV,services. Everthing seems to be 46 to 58 miles from your location.
I Punched your possible zip codes into an ASO finder ( below) and came up with nothing. The only way I could get results was to check within a 50 mile radius of where you live.
http://directory.poz.com/
You seem to be situated midway between Orlando and Tampa. If I were you. I would talk to your doctor, about finding someone who specializes in HIV, in either Orlando, or Tampa. I know this means a 46 to 58 mile drive ( one way), but if I had to do it, to get proper care, I would.
Have you tried contacting the Florida Aids Hotline ?
Their telephone number is 1-800-FLA-AIDS (352-2437).
Have you been in contact at all with the Polk County Health Department. If not, you should definitely check that out.
They are here :
1290 Golfview Avenue
Bartow, FL 33830
(863) 519-7900 X1002
FAX 863-534-0293
http://www.mypolkchd.org/
I have a PDF document dated 2007, which also gives some information as far as ASO's and other services. These are mostly in the Orlando (Orange county area ) Give it time to load.
Click below and take your time going through this PDF document. Ther's a lot of info there. As I mentioned , the document is dated 2007, so there may be changes. I am not sure of the accuracy.
http://www.hcecf.org/HCdocs/2007%20HIV%20Community%20Resource%20Directory.pdf
Just to give a little info from this Document :
Orange county health department
832 W. Central BLVD
Orlando, Fl
Tel (407) 836-2675
Also Possibly check into this :
Positive healthcare
1516 E. Colonial drive
Orlando, Fl.
tel (407) 4471670
It doesn't hurt to give these places a call, along with others listed on the PDF document. Do you have someone that can help you out? A close friend, that can take the time to possibly make these trips to Orlando with you?
Also, how are you currently receiving your meds?
I know there's something that I am leaving out. I've got to get moving here soon. If I think about it, I will post it tomorrow.
Let us know how your doctor visit goes.
Hang in there----Ray
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Buzz,
How did your doctor visit go today ?
Ray
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Thank you Ann, Moffie, JRE,Hades and everyone else -
The links are very informative - I have alot of reading to do
I went to my Doctor the other day CD4 is now 385 but the VL is now detectable at 300
I spoke with my doc regarding being on the same NNTRI's and he said it was because my liver was not taking to well to the combinations - I am now on Epzicom and Sustiva - today is my first day on Epzicom (it came with a warning card to put in my wallet) - side effects today are hot flashes, diarreha, headache, running nose, aching bones - no appetite today - it comes and goes - i lost 3lbs in a month - a guess this is good as i gained 67 lbs since i got out of the hospital the doc says its the meds - i was on Bactrim and Prednisone for 15 monthes - other then that i think the extra weight is keeping me healthy - i asked my doc "I thought when you have Aids you lose weight not gain it" he said you do if the meds are not working -
Sorry I have not posted sooner - been busy at work the resort is at 100 % this week with the holiday coming.
Talk to you soon
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Hello Buzz,
It's good to hear from you. Also good to hear that your doc, dropped the Viramune, and now has you on Sustiva and Epzicom.
I am also on Epzicom. Depending on the time of day the you take it, you can take this med with food. It might make it a little easier on you.
Epzicom consists of two medications. Those are Ziagen (Abacavir) and Epivir. Your probably already aware of that. Understand the side effects from Epzicom , and report anything out of the ordinary with your doctor. Hopefully this regimen will work for you. You need to watch for any kind of hypersensitivity to the Abacavir component of Epzicom, as a small percentage of people may have a problem with it.
http://www.aidsmeds.com/archive/Epzicom_1580.shtml
Good luck----Ray
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Buzz,
Sounds like everyone is giving you great advice. One thing I would recommend is that your partner get tested. Treatment and knowledge are the keys to survival. If he is poz you don't want to wait until he gets sick to find out. HIV management depends on knowing your status.
Yes a 50 mile drive might be bad. But I think it's important to see a doctor who is current on HIV meds and treatment.
For the part about being ashamed. Don't be. A counselor can really help here. Having someone to go and talk about it with would be good for both you and your partner. Both of you are bound to have concerns and issues.
Sex is a normal and healthy part of life and there is no reason that you and your partner can't work through those issues and enjoy a healthy and safe sex life.
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Hot Puppy,
My partner and i dont talk much about my hiv i have tried to get him to go to the doctor but he is a typical male when it comes to doctors - some how deep inside i keep thinking this illness is going to go away - i have just started talking with a therapist - had one session she seems to think i have mother issues - thats a different story all together - but yes i have been getting good advice from everyone on here - i have felt so alone for sometime trying to deal with this issue - i told my manager at work as he is gay and had his partner pass away from aids related complications and numerous friends - he his helping me get thru this too, he also says not to be ashamed - and with all the new meds people are living longer lives - the meds are helping as my cd4 is going up - but i alway feel achey, tired and bloated- but i guess that is better then being dead.
Take care
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I don't wish to sound rude, but considering that you waited to learn of your own HIV infection until things dipped to an atrocious level of 11 cd4s I'd try to not be so cavalier with your partner's obstinance and evident sense of denial and be insistent that he go to the doctor for an HIV test. I mean honestly, it's been 16 months now since you've both known about this, not 16 days.
I'll also add that you, the patient, still don't seem to "get" that your doctor is completely clueless about his choice to dole out a combo that contradicts CDC treatment guidelines -- I'm curious as to why you seem to disregard the potential need to locate a doctor that attends to more than one other HIV patient. It's almost like you don't really care about any of this.
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my partner went for testing this morning
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my partner went for testing this morning
Good, totally the correct course of action though obviously not a pleasurable thing to deal with.
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Glad to hear your guy has gotten tested. Fingers crossed.
And just as a general thing I want to add that shame and depression flourish in isolation. So speaking up here (and in other appropriate settings you may choose) is a good way to dmiinish the power of shame and depression. Those feelings don't like when a light is turned on them, which is what you are doing when you open up the way you have here. Good for you!
We'll be waiting to hear more about the test result as well as anything else you want to talk about.
Cheers.
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Sustiva made me angry, agitated, depressed, withdrawn, tired, achy....I stopped taking it after 3 years. Things are much better now. I'm on Reyetaz/Norvir/Truvada. Will never take Sustiva again.
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im on epzicom now and still sustiva - the diarrehea has stopped but now my bones ache especially my ankles - and still have headaches and no appetite - i go for blood work tomorrow and see the doc on 12/17 -
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I am now on Epzicom and Sustiva - today is my first day on Epzicom (it came with a warning card to put in my wallet) -
hey buzz, I am sorry to hear about your diagnosis, I wanted to let you know that I am on Sustiva and Epzicom and have been on them since 3/06, no side effects to report. You will be fine, hang in there, and welcome to the forum. D
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Buzz, just in case you haven't already thought of it, write down any questions you may want to ask your doctor. When you get into an appointment it can be awfully easy to forget things you wanted to ask.
Also, as far as Sustiva in particular is concerned, sometimes the period of adjustment can include intense dark thoughts and feelings. It's good to let someone(s) close to you that it might be a possibility so they can watch for signs of. For most that period passes and then come the benefits because it is a very powerful drug.
Cheers.
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The "dark" thoughts got increasingly worse instead of better for me while on Sustiva. But of course everyone is different. Good luck to all!
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Keep your head up Buzz.
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Thanks everybody - I went for blood and going to see the doctor this wednesday - I have been on Sustiva since i was diagnosed, also have been on and still am on prozac - I just dont have the get up and go i use to have.
Thanks for all your support!!!
I do have a list of questions and lab tests for my doctor - i will keep everyone posted
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Hey Buzz,
How did the appointment go?
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doctor appointment went ok my cd4 382 and 20%, vl 405 - lost 14 lbs in a month, i told the doctor i do not have an appetiite - he said just try to eat - also told him about the fatigue and the bone aches - he gave me a script for muscle relaxers and anti inflamitorys- and i have to go for more lab tests and a cat scan for the headaches, my platlet count has dropped that explains the easing bruising - i go back to see him on jan 11 - see what happens then.
Thanks for asking and for the support