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Author Topic: Who in hope believed against hope  (Read 2583 times)

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Offline zach

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Who in hope believed against hope
« on: February 28, 2014, 08:23:42 PM »
just a vent. everytime i've approached an ASO for help, i get nothing. today i went to IDP, got a little run around, supposedly they will help me monday when i have yet another document in hand.

i cannot shake the feeling that i'm just supposed to die, stop stinking up the joint. i had better access to meds when i was scoring them illegally.

everytime i try to come back to civilization, i regret it. happier living in a tent in big cypress.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: Who in hope believed against hope
« Reply #1 on: February 28, 2014, 08:34:37 PM »
I have felt that frustration and I almost felt crushed by it until I departmentalized the process of getting what I needed . I finally came to a point where I looked at getting what I needed to get on treatment and well again as a job .

I know that might sound dispassionate but that was how I managed to get it done, one piece of work or part of the puzzle at a time until it all came together .

Im really happy to hear you are talking about it and moving forward . Its something all of us must face at some time if we are uninsured or underinsured . Its allot of work and not a fun day at the office . 

Online leatherman

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Re: Who in hope believed against hope
« Reply #2 on: February 28, 2014, 08:48:27 PM »
everytime i try to come back to civilization, i regret it. happier living in a tent in big cypress.
sorry to hear about the issues.

when I lived in OH, there was no ASO and I had to manuever the waters all by myself. Now I'm in SC with a good ASO. I should point out that in rural SC, I'm very lucky to be near any ASO - but I researched this place before moving here.

so, is there any way you can move to a different area to get services through another agency?  I know that moving is not always wanted but it is often not considered as an option that it is. Just putting that idea out there ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline zach

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Re: Who in hope believed against hope
« Reply #3 on: February 28, 2014, 08:56:20 PM »
i want to move back home to ellijay georgia, even found an acre at a great price. but i care for my father, and there is some sort of history he won't explain to me, he is adamant about never returning there. the house we live in now, has been family owned since wwII, is a complete dump, and the neighborhood has gone from honest working class, to hood in the past twenty years. but my father seems completely unable to leave this house.

IDP is reputable, i believe they will come through for me. i've just got some flaming hoops to jump through first. i'm just a monkey, performing for peanuts.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline BT65

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Re: Who in hope believed against hope
« Reply #4 on: March 01, 2014, 04:29:49 AM »
Zach, I'm sorry you're going through this.  At my last job, which was at an ASO, I always hated to tell a client we needed another document.  Unfortunately, we were mostly funded through the State, and they have very specific guidelines for different programs, funding etc., on what's required for that specific grant or program.  So, most times an ASO tells you they need another document, it's because that is a requirement of the funder. 

Not that it makes it any easier, but just hope this makes it easier to understand.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline zach

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Re: Who in hope believed against hope
« Reply #5 on: March 02, 2014, 07:25:50 PM »
back at it again tomorrow, looking aidsy, hope it helps, skin on my face is shedding like the recent snow storms
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: Who in hope believed against hope
« Reply #6 on: March 03, 2014, 12:57:14 PM »
omg, i would rather build a brick wall and slam my head into it repeatedly. would probably get better results.

at least, i believe all financial forms are complete, and i am officially hooked up. tb test taken, will be looked at wed. and if i understood things correctly, i will have labs done wed as well.

and credit where it is more than due. tim made a phone call for me. and a man said three words that worked better than a bottle of lube "get him connected"
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline buginme2

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Re: Who in hope believed against hope
« Reply #7 on: March 03, 2014, 01:00:31 PM »
Excuse my ignorance.

But what are you going to the ASO for?

I read all the time about people going to their ASO however, many times people dont say why they are going there.  I have never been to an ASO and I think my idea about what it is may be wrong. 

What services are they providing.  I know they can help you set up insurance coverage and ADAP if you need it.  But, what else?

Offline zach

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Re: Who in hope believed against hope
« Reply #8 on: March 03, 2014, 01:03:48 PM »
well, i'm really hoping for some meds, that would be keen
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Online leatherman

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Re: Who in hope believed against hope
« Reply #9 on: March 03, 2014, 08:19:33 PM »
What services are they providing.  I know they can help you set up insurance coverage and ADAP if you need it.  But, what else?
many ASOs are the only HIV clinic/doctor in town (or even several counties!) and are the "one stop shops" for everything HIV in an area. These ASOs often not only do clinical casework (deliver actual health care with doctors and nurses) but have HIV case managers who help with housing, food, Ryan White services, referrals to specialists, etc. These non-profit charities often fill-in in the remaining healthcare coverage gaps and get healthcare access to people in limbo (ie until their paperwork goes through for state or federal assistance, or for those are "too poor but not too poor" for assistance - right now this is all those who would be eligible for Medicaid Expansion; but who don't have access because their state has rejected ME). Many ASOs also do outreach education and prevention work too - that means hosting learning events at schools and colleges along with having off-site condom distribution and HIV testing.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline buginme2

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Re: Who in hope believed against hope
« Reply #10 on: March 03, 2014, 08:36:36 PM »
many ASOs are the only HIV clinic/doctor in town (or even several counties!) and are the "one stop shops" for everything HIV in an area. These ASOs often not only do clinical casework (deliver actual health care with doctors and nurses) but have HIV case managers who help with housing, food, Ryan White services, referrals to specialists, etc. These non-profit charities often fill-in in the remaining healthcare coverage gaps and get healthcare access to people in limbo (ie until their paperwork goes through for state or federal assistance, or for those are "too poor but not too poor" for assistance - right now this is all those who would be eligible for Medicaid Expansion; but who don't have access because their state has rejected ME). Many ASOs also do outreach education and prevention work too - that means hosting learning events at schools and colleges along with having off-site condom distribution and HIV testing.

Thanks yea I'm picking up what your putting down.  I have volunteer at an ASO here but haven't used their services.  I'm familiar with the prevention efforts and the assistance provided in getting people insurance or adap and what not. I know they have social workers that can help with housing.  The aso I volunteered for also delivered people food who were low income (like meals on wheels for hiv patients). 

 I think the OP's post confused me.  Wasn't sure why the aso would be providing him meds.  The ASO here doesn't provide any medical care. 


Offline zach

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gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Miss Philicia

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Re: Who in hope believed against hope
« Reply #12 on: March 04, 2014, 09:51:57 AM »
That's really weird that they require that patients dip to AIDS cd4 nadir levels before being accepted for care.
"I’ve slept with enough men to know that I’m not gay"

Offline zach

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Re: Who in hope believed against hope
« Reply #13 on: March 04, 2014, 10:07:11 AM »
agreed ms p, i believe they are accepting my nadir count as qualification for service. the lowest lab i have in hand was 86. i also believe i will labs done tomorrow, but i don't know. i don't know if those numbers will affect my eligibility.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Online leatherman

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Re: Who in hope believed against hope
« Reply #14 on: March 04, 2014, 11:34:11 AM »
agreed ms p, i believe they are accepting my nadir count as qualification for service. the lowest lab i have in hand was 86. i also believe i will labs done tomorrow, but i don't know. i don't know if those numbers will affect my eligibility.
aids cd4 = 200
you should qualify  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline buginme2

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Re: Who in hope believed against hope
« Reply #15 on: March 04, 2014, 12:43:42 PM »
I cant believe they make you wait until your cd4 count drops below 200 before you "qualify" to get care.  Thats so wrong

Offline zach

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Re: Who in hope believed against hope
« Reply #16 on: March 04, 2014, 01:23:02 PM »
welcome to georgia, we're just supposed to die. its what they want, gods punishment and all.

seriously, from everything i have heard around here. grady idp is supposedly the best ASO around. not that i'm gonna hold my breathe for meds or anything, i like air. 
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Miss Philicia

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Re: Who in hope believed against hope
« Reply #17 on: March 04, 2014, 01:33:58 PM »
agreed ms p, i believe they are accepting my nadir count as qualification for service. the lowest lab i have in hand was 86. i also believe i will labs done tomorrow, but i don't know. i don't know if those numbers will affect my eligibility.

No if the define it as nadir (lowest recording) then you qualify period. It seems as if they are targeting their patient load on the more immune compromised patients, which in your case will be to your benefit.

I cant believe they make you wait until your cd4 count drops below 200 before you "qualify" to get care.  Thats so wrong

I would assume in a city with a metro size of 5.5 million there are other HIV clinics running without that restriction. Surely.
"I’ve slept with enough men to know that I’m not gay"

Offline zach

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Re: Who in hope believed against hope
« Reply #18 on: March 04, 2014, 03:06:58 PM »
ms p, through no ones fault but my own hole i dug myself. i have no job, no money, no car, no access to public transportation, no idea what my lab levels are, and no meds.

i'm just trying to put it back together, get to a point where i'm standing on my own again, then i'll try to improve over the bare necessities

we all have to die, thats a promise. i just don't want to die sick. i'm not entitled, maybe i won't get anything. but i can ask. hell, i'll even beg if they need me to.

http://www.youtube.com/watch?v=9ogQ0uge06o
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: Who in hope believed against hope
« Reply #19 on: March 05, 2014, 02:06:38 PM »
today was a complete a waste of my time and fuel. they could have easily called me and asked if the TB test was reactive. appt made for the 27th. once again, i believe i will have labs taken at that time. at some point after the results of those labs, hopefully i'll get on meds again.

i do know, that between now and then, i should go back up there, and do all the same application for assistance and proof of all documents for every isolated and compartmentalized department in that place. i have never seen such a display of the right hand not having a clue what the left hand is doing.

confidence level very low.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: Who in hope believed against hope
« Reply #20 on: March 05, 2014, 02:09:12 PM »
and writing this letter, in hopes of being heard or understood, was a waste.


I was diagnosed with AIDS in July 2010. My nadir was 86. I have not been under medical management in nearly two years. For awhile I had access to meds, but have not been on meds in over a year. I was on Atripla, but would like to discuss other regimens. I have no job, no money, no insurance, no vehicle. I need help, please sign me up for anything and everything that will help me to get stabilized.
Labs I feel are needed ASAP: Viral Load, CD4 count, CD4 %, Liver Enzymes, Testosterone. Something is wrong with my blood pressure. My BP readings in the last week have been 86/58 pulse 104, 90/54 pulse 92, 78/57 pulse 100.
Meds hoped for: A combo ARV other than Atripla with little to no psychological side effects. I believe Atripla just about drove me insane. I would ask for an appetite stimulant. I have gone from a normal weight of 165-170 to a current weight of 135.  I have lost all muscle tone, and the muscles in my legs are in pain. I have become so weak that standing for periods of time has become difficult. This has affected my ability to walk distances. I have lost all libido, and am impotent. Not a priority for me, but an obvious indication something is wrong.
Something to effectively treat what I believe is seborrheic dermatitis of the scalp and face, I'm no doctor and hesitate to self diagnose. Its gotten extremely painful. Ketaconazole would be awesome.
Symptoms I am living with but do not understand the cause of. I have some sort of UTI or prostate issue, urinating has become difficult. Bowel movements are usually difficult and painful, and not regular.
Profound fatigue. I am sleeping upwards of 15 hours or more per day. It is fitful painful sleep. I pour sweat, my muscles lock, my jaw clenches. When I wake it takes 15-30 minutes to even begin to feel like I can move and function.
Sores and ulcers in my mouth. White sores that are very painful, usually located at the base of my bottom lip between the gum line and lip and along the sides of my tongue. They heal in a couple weeks. They make it difficult and painful to eat and even to speak.
I am concerned about IRIS, and a rising Viral Load. I have sought help, to no avail, and feel hopeless. I am terrified, and at a total loss. We all have to die, but I don't want to die sick.
Thank you for your time,
Zachry Davis
« Last Edit: March 05, 2014, 02:18:48 PM by zach »
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline AusShep

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Re: Who in hope believed against hope
« Reply #21 on: March 05, 2014, 03:06:04 PM »
Zach,

I'm really saddened to read about everything you're having to go through.  I hope everything works out soon.

Online leatherman

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Re: Who in hope believed against hope
« Reply #22 on: March 05, 2014, 03:13:05 PM »
today was a complete a waste of my time and fuel. they could have easily called me and asked if the TB test was reactive.
sorry, it has to be documented by a health care worker. The 2-day return is a pain in the ass but that's how it's done (ie it's a time-tested process that works very well in making sure that someone infected with highly infectious TB is treated)

I am definitely sorry to hear about all your problems. The "system" always seems to move slowly just when we want it to go fast. I can't offer you anything but comments on trying to have patience and to continue fighting for YOUR health and access to health care. It's sad that often when we need it the most, we have to fight the hardest - when we're less able to keep up the struggle.

I have read that you were on meds in the past, and you say that you had medical mgt and care; so I ask rhetorically, what happened?? I don't ask to be a dick or anything. I dropped out of care several times for my own reasons; and I stayed out of care until a hospitalization pushed me back into the system and treatment. Boy did that seem like forever though. There I was barely not-dead with AIDS waiting months to get access to meds. This situation that you find yourself in (and that I was in several times) happens frequently and I'm amazed that we don't hear about more AIDS deaths from people falling out of care and unable to get back in care in time. (we've had 3 or 4 deaths in the last few years for this exact reason at my ASO) It sounds like you have fallen out of the system and are seeing how hard it is sometimes to get back into the system.

I have sought help, to no avail, and feel hopeless. I am terrified, and at a total loss. We all have to die, but I don't want to die sick.
I hope that you don't give up hope yet. Clearly you are on the right path to get back into services. You have sought help and it's coming - slowly, sure; but you've had several appts now and more on the schedule. Progress will be made if you keep up your efforts to get assistance.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline buginme2

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Re: Who in hope believed against hope
« Reply #23 on: March 05, 2014, 04:52:07 PM »
Sorry

Don't give up

Offline zach

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Re: Who in hope believed against hope
« Reply #24 on: March 05, 2014, 05:06:25 PM »
"I have read that you were on meds in the past, and you say that you had medical mgt and care; so I ask rhetorically, what happened??"

thats a legitimate question, i don't think you're being a dick at all. one day i might be able to fully explain. quick answer, in 2010 within about two months... first my dog died, then my youngest son was killed in a car accident, then i was diagnosed aids/poz. after that, everything else fell apart a piece at time. my health had been nosediving, and then just tanked before a hospital stay for pneumonia. i lost my job, a very heavy and physically demanding job. i shouldn't have lost the job, it was a great job. i tried to transfer to another dept, but at that point my status was known and i just didn't handle things well.

i'm really just using this thread to vent a sort of running commentary of how this process is playing out. and the letter i pasted in, a little quicker than i caught my name there. no longer a big deal to me. everyone that knows, tells someone. by now everyone in my life knows. i know the forum is publicly searchable.

long before aids, i have a list of psychological problems. anxiety, bipolar, antisocial, anger management issues most of my life. when it all fell apart, i went down to florida, lived in a tent by big cypress. did side work rescreening pool enclosures. and although i wasn't getting regular labs, my step father down there works at a prison, and was able to supply me with atripla that continued to be sent even after the inmate had been released. it may not have been a normal existence, maybe not healthy, but it worked for me. i kind of wish i had been able to continue that way.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline BT65

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Re: Who in hope believed against hope
« Reply #25 on: March 07, 2014, 05:00:08 PM »
Zach, I have never heard of an ASO that has CD4 requirements.  That's extremely odd.

I don't have anything special to add, I just want you to know that no matter what, you need to keep fighting.  You have other people who need you.  If nothing else, just concentrate on that right now.  You can't die yet, you haven't given life a fair fight at this point. 

We have to do whatever we need to do to keep going.  I mean that.  If you want to talk, pm me.  I can totally understand survival mode, and understand what we have to do to survive.  Keep fighting.  It's the best choice.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline zach

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Re: Who in hope believed against hope
« Reply #26 on: March 13, 2014, 03:35:05 PM »
got a really great phone call yesterday from a guy at the clinic that tim put me touch with. suddenly i am starting feel a lot more optimistic that this route is going to have results. i have a dr appt the 27th of this month, we'll see how it goes. hope to get labs and meds following that
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: Who in hope believed against hope
« Reply #27 on: March 13, 2014, 04:54:08 PM »
That is great news Zach ... I know being on treatment with a well tolerated combo gives great results and peace of mind and you are now well on your way to regaining your health .

When I went off meds I went downhill fast and it took me a while to rebound but just being back on meds gave me a better outlook and sense of wellbeing that was not there before . 

Offline zach

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Re: Who in hope believed against hope
« Reply #28 on: March 13, 2014, 05:03:35 PM »
i hear ya jeff, but i think on some level, with and without meds during the last few years, i had to do what i did to come back from the initial mind trip of the whole thing. i don't necessarily regret it, but i could have handled things alot better than i did

hoping it will come together in a good way this time

edited to add: hey, while we're on the topic of going back on meds. is iris really a concern, or a remote possibility? i've read wiki on it, think i've got a handle on understanding, not an expert though
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: Who in hope believed against hope
« Reply #29 on: March 13, 2014, 05:09:58 PM »
edited to add: hey, while we're on the topic of going back on meds. is iris really a concern, or a remote possibility? i've read wiki on it, think i've got a handle on understanding, not an expert though

Its a very real possibility and its should be on your list of things to discuss with your new doctor ... I do hope you have list written out to take with you so you can ask and follow up on what is discussed . 


Offline zach

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Re: Who in hope believed against hope
« Reply #30 on: March 13, 2014, 05:27:03 PM »
yeah, once i get organized, i'm retentive about details and order. this process has pushed me to get it together... i've got a prioritized list of symptoms that i want at least considered, all nice and typed out with a brief for each one.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: Who in hope believed against hope
« Reply #31 on: March 26, 2014, 01:17:11 AM »
Dr appt on 27th, so i'm putting together notes about what to say to the doctor i will hopefully be seeing tomorrow. Guy feeling is the only reason i'm going is to have blood drawn, and these issues won't be dealt with until followup

Issues

AIDS- Priority 1 i need meds, doesn't have to be a one a day, multiple pills is not a barrier for me. Nothing with Sustiva

Wasting- i've quickly lost an alarming amount of weight, i want to regain

UTI and Gastric- this is serious

Leg muscles- this is serious, walking is becoming spasic, driving is impossibe

Blood Pressure- I have low blood pressure, I occasionally stand up only to faint and fall to the floor. A couple times I have had seizures when this happens. Testing my BP readings a couplw weeks ago were 86/58 pulse 104, 90/54 pulse 92, 78/57 pulse 100.
Sleep
Impotence, not a priority but obviously an indication of something wrong


Labs
Genotype/Resistance
VL/CD4 count
Testosterone
PSA
Kidney/Liver/Lungs


How long will lab results take, and how soon can I expect to be on meds?
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Ann

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Re: Who in hope believed against hope
« Reply #32 on: March 26, 2014, 05:49:21 AM »
Sounds like a plan, Zach!

If you don't have one already, I'd suggest you pick up a small, pocket-sized notebook to write these issues down in - and make sure you leave plenty of room after each issue to write down what the doctor says and his/her plan of action.

It's all too easy to forget everything you want to discuss - and also forget what was said when you do remember to discuss it.

I still do this for every doctor appointment (GP included) even after all these years of regular appointments. If I don't write stuff down (or forget to take my notebook) I forget too much. Even stuff that's really important and one could be forgiven to think I'd not forget it... if I don't write it down, half the time I will forget. ~sigh~

I've got my fingers (and toes, arms, legs and eyes) crossed that you get sorted out quickly and start feeling better soon. Hang in there in the meantime! We're all rooting for you - at least I know for sure I am. :)
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline BT65

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Re: Who in hope believed against hope
« Reply #33 on: March 26, 2014, 10:21:08 AM »
Zach, I always ask that copies of my labs be mailed to me, and I usually receive them the following week.  The viral load takes a couple days longer. 

I would tend to think the doctor would also do a resistance test with the labs, you might ask for one also.  Weren't you on treatment before?  Make sure to mention that, what meds you were on etc., if this is a new doctor. 

I would think another appointment would be made for a couple weeks out, once the doctor has your complete labs.  I would guess at that time you would be put back on treatment.   I am not sure about the remainder of your issues, like how long it would take to treat each one. 

Along with Ann, I am pulling for you!  Please keep us updated.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline zach

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Re: Who in hope believed against hope
« Reply #34 on: March 26, 2014, 10:31:17 AM »
ann, i keep notes on my phone, updates to my desktop, some items get editted off the list, in the light of day i know paranoia when i see it. others get a bit more detail added in

i'm just about to the point of dragging my rotting corpse in there just to make them look bad.

omg, look at him, he's sick. if we don't treat him, he's going to die on the floor right there. that'll make the news, aidsey guy kicked at the aids hospital for lack of medical care. YEAH!!! we better help him out, wouldn't want all that.

but afterall, he made a lifestyle choice. quarantine him to the new leper colony. why should society pay? this is god's punishment, for his sinful and wicked ways.

(sorry, went off the deep end there)
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: Who in hope believed against hope
« Reply #35 on: March 26, 2014, 10:35:44 AM »
Best of luck Zach . I cant begin to tell you how happy I am to see you moving forward again .
I dropped out of treatment once and my health deteriorated to the point I was not sure I could recover but I did in time . Getting back into treatment was hard but worth it, I was able to regain my health and in time regained a sense of hope for better things in life that I thought was gone forever .

You thread has moved me and I thank you for it .

Offline mitch777

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Re: Who in hope believed against hope
« Reply #36 on: March 26, 2014, 01:19:37 PM »
Zach,

Great news about your upcoming appointment! Seems like you are pretty well organized.

Just wanted to say I'm another one here rooting for you!

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline guitargal

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Re: Who in hope believed against hope
« Reply #37 on: April 03, 2014, 04:11:40 AM »
Its a very real possibility and its should be on your list of things to discuss with your new doctor ... I do hope you have list written out to take with you so you can ask and follow up on what is discussed .

i swear i had/ have IRIS.. i was taken off meds  Atripla   I wanted to change cause of the mind games, had really bad leg pain too...but he said stop "to see if my leg pain would go away"
by the time i got a second opinion and was put on complera  almost 3 months went by..
then right after starting complera  i got these full body pain attacks, extreme fatigue.
"you don't have Iris! " he yelled.  " i don't know about the pain. take an antidepressant..lyrica cymbalta topomax…i kept saying .. you don't know what is wrong and want me to take topomax?  and i can't eat or sleep with this pain..
no referals, no tests.. quacks! finally after 6 months some pain meds. 1 a day..  not enough. home bound in bed a lot..not eating….

FF 2 years…still full body pain , new doc of one year compassionate about pain so i can take 3 low dose oxy and lorazapam and can now eat and do a little more... i get so upset that know one knows why this pain started out of the blue… IRIS! 
if i just exert my self a little, light cleaning cooking errands i can't move. bed, ice, baths heat pads..  perhaps the iris kicked in the hep c and that is causing all the inflammation… going to try to treat that next..

NEVER let your doc take you off your HIV meds… as i found out later is is against all the CDC and WHO guidelines...

Offline Ann

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Re: Who in hope believed against hope
« Reply #38 on: April 03, 2014, 06:20:35 AM »
NEVER let your doc take you off your HIV meds… as i found out later is is against all the CDC and WHO guidelines...

For the benefit of our newbies, while the above statement is true - in most cases - there are some exceptions.

For instance, it is reasonable for a doctor to take a patient off hiv meds when they have recently started and ended up with a very bad rash / sensitivity reaction. This would normally be with the intention of trying another combo in a week or two once the reaction has subsided.

Most beginner's rashes wouldn't warrant this, but a really bad case or one accompanied by fever would. Most beginner's rashes subside on their own (without a treatment interruption) in a week or so and can be managed with antihistamines.

There are other situations, but that's really about the only one a newbie might be faced with.

What you don't want is to have a doctor take you off your hiv meds without a re-start plan in place, so you don't end up going months without like Guitargirl did.

And btw, combo switches do not (normally) include a complete stoppage of meds. You simply take your last dose of the old combo one day, and the first dose of the new combo the very next day. No treatment interruption in-between, no worries about resistance issues, no worries about IRIS.

Also for the newbies - if you don't know what IRIS is, read this PDF: http://www.projectinform.org/pdf/iris.pdf

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline guitargal

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Re: Who in hope believed against hope
« Reply #39 on: April 03, 2014, 03:34:57 PM »
yes, there are exceptions..thanks Ann.

 I never heard about IRIS when that happened to me. The norm i believe is to try to not take a med vacation..
Change meds, get referrals and tests to investigate what could be gong on.

There are many med combos now.. so many with out bad side effects…
Sometimes you and your doc will find one that you can stay on for years and feel great!

 


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