POZ Community Forums
Main Forums => Living With HIV => Topic started by: Growler on May 02, 2012, 09:55:18 pm
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Sorry don't know who else to tell. Was told by the DR this morning that I have aids. Feel numb. Fuck this shit.
GROWLER
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Sorry don't know who else to tell. Was told by the DR this morning that I have aids. Feel numb. Fuck this shit.
GROWLER
Are you saying your cd4 count is AIDS-ish?
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Are you saying your cd4 count is AIDS-ish?
No, thats why this is such bullshit. My last CD4 count was 510. He says I have "wasting syndrome " and having lost 25% of my body weight I now supposedly have "aids". This doesn't make any sense. It's too early and my numbers are good. I am above 200, I by definition can't have aids?????
GROWLER
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I know its a jolt the first time you hear that , it certainly was for me . The good thing is that I have lived with it for 28 years so that nasty word has lost its edge for me .
Take your meds if you are on them and keep those doc appointments and you can live to have the dubious bragging rights some of LTS have . Please remember with today's drugs and a little luck Aids can become HIV again . Hang in there for us .
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Growler, he's defining "AIDS" by the fact you have an identifiable OI, not by cd4 count. Which really is as it should be. But regardless, with much effort you will gain the weight back.
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I'll figure it out.
GROWLER
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I'm going to call the local aids council. I don't think I can do this by myself anymore.
GROWLER
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Growler,
I'm sorry to hear you're in a low period. Even though we haven't had much interaction, I've been reading the difficulties you've been going through. As with everyone here, I send positive energy your way--whatever that is worth.
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No, thats why this is such bullshit. My last CD4 count was 510. He says I have "wasting syndrome " and having lost 25% of my body weight I now supposedly have "aids". This doesn't make any sense. It's too early and my numbers are good. I am above 200, I by definition can't have aids?????
GROWLER
It doesn't mean you are going to die, I was diagnosed with Aids about 16 years ago, after losing weight and being ill. I guess technically I still have it because I don't think they remove the diagnosis, but I consider myself HIV positive if anyone asks me. I am back to being relatively healthy since then, thank God the Protease came around when I started wasting away. Maybe now you will qualify for extra medical help if you need it, best of luck and try to change meds to get your weight back up. I remember when I was wasting I had no appetite and no food appealed to me. I even tried Marinol and that didn't help, now I would like to lose 40 pounds.
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Growler......15 yrs ago I had 90 t-cells and wasting along with 2 others OI's, I was very sick and gravely disabled, but I took care of myself and 7 yrs later I got better :)
I still have AIDS, buy definition, but, I live each day like it's my last ;)
Take your meds, and continue to see a doctor, if you do this for yourself, and keep healthy you will no-longer have AIDS, instead you'll just be HIV+ and somewhat healthy :D
I'm humble that I'm somewhat healthy after 25 yrs. and if I get sick all over again, I aint going down without a FIGHT, I figure what the fuck else do I have to do......
hang-in-there Growler ;)
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Thanks for the reassurance guys.
I think this might be a good thing. I spoke with someone at the aids council yesterday and they said if I call back after 11 today I can make an appointment to see a counselor. Probably should have done this 2 and a half years ago but can't change the past.
GROWLER
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Are you on meds? Did your Dr address how he is going to treat the wasting?
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Are you on meds? Did your Dr address how he is going to treat the wasting?
I'll be starting meds in a couple of weeks time after a few things are out of the way. I have to have a ultrasound and needle biopsy of a "large lump" they are found in my groin during the CT scan but I'm told they're sure its not cancer. I'm also awaiting an ecocardiogram of the heart for the new murmur they found during my visit back in early April.... original request was sent to the wrong area so they need to rebook.
I've been cleared of TB, blood, urine and bowel infections and I eat very well so I assume that starting meds will be the solution to stopping the wasting. In the meantime another 2 inches and I'll be fitting into Karl Largerfieds 28inch jeans.....the irony being I probably be celebrating the weight los if it was fat I was losing instead of muscle.
GROWLER
Ps in case anyone is wondering is he really eating enough... Yesterdays menu was
3 slices of toast with vegemite
2 slices banana and blueberry bread
1 cheese and spinach wrap
2 slices catalope
1 slice of watermelon
2 mini crisounts with cheese and tomato
1 meat pie
1 sausage roll
1 apricot danish
Rissoles, baked veges and a bread roll
Slice of date loaf
3 small bottles of lemon soda
1 Latte
and about 8 assorted biscuits (cookies)
Still Hungry?
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Sorry don't know who else to tell. Was told by the DR this morning that I have aids. Feel numb. Fuck this shit.
GROWLER
I'll be starting meds in a couple of weeks time after a few things are out of the way.
I've been cleared of TB, blood, urine and bowel infections and I eat very well so I assume that starting meds will be the solution to stopping the wasting.
GROWLER
Hey Growler,
Sorry to hear about all the problems you've been going through lately.
I'm another that went through wasting for about a year, 9 years ago, so I can understand what your going through. During that period of time, I lost about 40 pounds.
I can only tell you what I've gone through, but after I started on HIV medication, and all the necessary tests were done to rule out , or treat the opportunistic infections that I had going on the weight came back on quickly.
It good to see that your eating well. You need this nutrition and protein. You should also be drinking, plenty of drinking water, to keep hydrated.
You need to be able to rest when your tired, and try to get a good 8 hours of sleep on a daily basis. You can't go burning the candle at both ends.
Wasting is no fun ! It's the worst thing I went through, But I am also glad to say, that all the weight came back, and after I started on meds, it came back very quickly. Each day I was gaining a pound or two. For a while there, I got more weight than I needed. :P
So, Hang in there !
Ray
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Ugh, sorry to hear that, but you should not worry either about the stupid "AIDS" or the "wasting". I waited as you have done before starting treatment much like many people for whatever reason and so went through both. The worst was being told I had AIDS but guess what, I am still here. My numbers are improving, slowly but I have hopes and my weight changes from month to month depending on what is happening. Bottom line don't stress. Now how is the Bear is doing? :) If you were in the States I would offer you more, food and a place for your Bear, not you, LOL! :P
I wish you both the best and please take care.
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Tonight I stood at the door of a religious charity mens shelter with shit dripping out the legs of pants after having been grossly faecally incontinent. I explained what had had happened and why (ie being positive) and I was literally begging to use their shower to clean myself up and in response I was told that because I wasn't a resident they couldn't help me. I have never felt so humilated and worthless in my life.
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Growler, if you have not already done so go immediately to your HIV specialist and have a stool sample taken. You need to rule out something like a parasite in your GI tract, as well as be taking some type of medicine to control this issue.
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Growler, if you have not already done so go immediately to your HIV specialist and have a stool sample taken. You need to rule out something like a parasite in your GI tract, as well as be taking some type of medicine to control this issue.
Quoted to double triple super dooper highlight this - just exactly what I was thinking and was gonna recommend.
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Numb is understandable when a professional informs of you of something you find fearful, however i was diagnosied with Aids due to numbers and several OI's and on one instance was placed in a hospice to be cared for until, well you know. Today here I am at work, making traveling plans for the summer, recently published my first novel, dating and enjoying life, undetectable. Its a roller coaster with the numbers and the often acquired illnesses but we have to do what we have to do to sustain ourselves mentally, physically, and of course spiritually. We fight with all we've got because that's all we can do. Over time the numbness will go away. If you allow it to fester and dampen your spirit you weaken your health as a whole. Perk up, that's what the doctor said, now show him what you're made of! FIGHT!
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Growler,
I also agree with Philicia and Thunter34. Because of the fact that you have so much going on with your GI tract, there might be a slight possibility you could have crypto or something similar so look into it when you can.
Otherwise, thanks for keeping us updated regarding what's going on.
And if it's any help, 10 years ago I had 57 t-cells and as of my most recent labs they were 964. It is possible to rebound after hearing those dreaded words: 'you have AIDS'... just remember that will not always be the case.
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Growler, I kinda know what you're going through. 6 months before my definitive Dx, I had a chronic diarrhea followed with the subsequent wasting shortly. It was in december '07. and to make things worse, I got a false negative on my first VIH test, so I went from doctor to doctor the next months until April '08, where the gastro specialist that attended me at the time told me to redo the HIV test (just after having an endoscopy without issues and another load of expensive tests that revealed absolutely nothing) and well...the HIV test came in and the rest is story..
After the WB test, I almost got inmediately on meds, even before my very first Cd4/ Viral load test. I started with CD4: 92, and 420.000 Viral load ,And man, it was possible to recover from wasting (and from a Molluscus contagious OI I had too), took me something like +6 months. I wish I had found this forum at that time, would have helped me a lot on that rough time of my life.
And please, follow Miss P advice and suggest your HIV doc to analyze your stools just to discard some possible GI tract infections.
Hang in there, you'll be back in your normal routine. The only good thing about this, is that actually blamed all of this to a GI virus, so nobody in my former job knew that I had teh aids, I suppose that with PCP or other OI this wouldn't be possible.
PD: Can you take some days off your work while starting the meds? I took my vacation period almost inmediately on my first month taking meds, it was good for medical appointments and tests.
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Tonight I stood at the door of a religious charity mens shelter with shit dripping out the legs of pants after having been grossly faecally incontinent. I explained what had had happened and why (ie being positive) and I was literally begging to use their shower to clean myself up and in response I was told that because I wasn't a resident they couldn't help me. I have never felt so humilated and worthless in my life.
Don't tell people like this about being HIV positive, it can only make your chance of getting help worse and lead to discrimination. You should have asked to speak to someone higher up. The fact that they turned you away makes them worthless not you. Try using a napkin to hold back your stool, I had to do that and look for signs when I had to go, and take Immodium. If it's too bad use an adult diaper or diaper pads. Don't fell humiliated, shit happens.
Robin Quivers (not HIV positive) from the Howard Stern show once talked about jogging on vacation and having a diarrhea attack, she found a landscaper who hosed her down, again, shit happens. I've pooped my drawers a few times. Once I was steps from getting inside when it happened.
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By the way, great song.
http://www.youtube.com/watch?v=H2lbiS1fris
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After my last post I came across the Sydney hospital and so I approached their emergency department. They were wonderful! They let use a shower and afterwards even tried to feed me :)
There is no reason for any of this to be happening. My poo has been analysed on 2 occasions and no parasites or other abnormal bugs. Switching to a Gluten free diet did nothing to improve the situation. A CT scan was normal. No TB. Blood cultures were negative. I am perfectly healthy, even my CD4 count is normal, 510.
I am seriously questioning whether it's all psychosomatic and I'm just wishing myself thin? I honestly don't know anymore. What ever is happening, I never thought I would say this since I've always envied people who are thin, but I want to be fat again.
GROWLER
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Growler, if one could wish themselves thin that easily, there would be no fat people.
I have to wonder if you're not just dealing with hiv-related diarrhea like I do. Even when I had more CD4s than you do, I still had it and still do. I tried all sorts, dietary changes, stool-samples that turned up nothing, IBS meds, you name it, I tried it. I also tried Immodium, which only messed with my stomach. The only thing that works for me is daily dihydrocodeine. I looked for other solutions for a few years before I finally gave in and started the daily codeine.
If you're dealing with hiv-related diarrhea, according to my doc you might just be stuck with it. He says most of his other patients who suffer with this didn't have any change when they went on hiv meds. :-\
I'm glad someone finally took you in last night and helped you out. As someone who has had public accidents, my heart goes out to you. It's horrible.
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I agree with Ann I have diarrhea like all the time mostly in the morning . Just hope things get better for you .i poo my pants to but that just life I guess good luck to you we all hope you get better .
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I need to step away until things get a little better. Thanks for catching me. I promise we'll be back.
GROWLER & SEBASTIAN
(http://i1102.photobucket.com/albums/g457/growler69/growler-1.jpg)
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Growler, please keep us updated regularly. There's a lot of people here who care about you and worry about you and Sebastian both - and I'm one of them. Take care of yourself and keep us posted, please!
Big hugs,
Ann
xxx
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Just wanted to say hi. Hope you all are well and safe. All's ok here I think, just abit tired but cruising along. Hope you're all safe and well.
Lots of love GROWLER
PS Sebastian is a little under the weather but I am looking after him so he'll be ok. Cheers!
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Glad to hear from you Growler, even if your post wasn't that detailed. At any rate I hope things are gradually improving for you.
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Dear Growler
I hope this note finds you comfortable and safe, ditto Sebastian , and that whatever is happening your getting what you need.
With love dear Growler
Michael
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OK
so, basically, your doc is wrong, for your CD4 count is too high for you to have AIDS
and, losing 1/4 of your body weight is serious
but, exactly what has he/she done to investigate the cause of your weight loss apart from blame HIV? Its very unusual to get HIV related weight loss at such a high CD4 count, there must be a probably-non-HIV related but ok-I-admit-perhaps-HIV related underlying cause
- matt
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I don't believe the weight loss is hiv related. I've been taking a break from the docs and I feel better. I think the whole thing is just a physiological response to stress, ie: I am a bit nuts, ok I will conceed a lot nuts. But put together stressful housing then no housing with choosing not talk with anyone and you have the ideal conditions for this to occur.
Insight is a bitch :(
GROWLER
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If I have prolonged periods of high anxiety levels and stress it's very easy for me to shut down in the eating department.
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Hello Growler- I can tell you that stress is a killer and can turn your guts inside out. Years ago before my + test I had weight loss problems related to stress. I saw many gastric doctors and they all said that my gut problems were stress related along with my type A personality, caffeine and liquor habit. I change jobs and quit the coffee and booze. My Dr prescribed a very mild tranquilizer to calm my nerves and it was amazing how quickly my GI track calmed down and I started to gain weight.
I see in your food list that you have a latte. You might try cutting that out the caffeine for a few days and see if that will calm your gut. To this day if I have a cup of coffee I am on the toilet within 30 minutes for a complete evacuation (TMI I know).
Peace,
Billy