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Author Topic: Im terrified... NEED HELP.  (Read 25660 times)

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Offline spacebarsux

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Re: Im terrified... NEED HELP.
« Reply #50 on: August 03, 2011, 11:07:36 AM »
When I went to the hiv support center yesterday they were really supportive again... she told me that I even have a lawsuit against the doctor who tested me for hiv without my consent and then told your result over the phone and then didn't want to talk to you when you called him back... And trust me I would like so much to sue him but how and in the mood that I am... He really shouldn't have done those things...

Well what your doc did was awful. Testing without consent is wrong- period. However, suing him etc is going to serve no purpose in my opinion. Better to concentrate on yourself and get on with your life, starting with doing well on your exam.

Edited to add- You could go to his clinic and yell at him though!  ;D. I would do that.
« Last Edit: August 03, 2011, 11:23:58 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #51 on: August 03, 2011, 10:35:44 PM »
Still can't believe that this is happening... i feel so bad for my little T4 cells... poor things :(

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #52 on: August 04, 2011, 02:18:14 PM »
hey friends... where have u all been?

my ID apt is in two weeks but I asked them to order my labs so i can go give my blood for them so that we got results to talk about on the visit... so today I went and gave my blood... it was the first time i was meeting my blood after my status... it was a bad feeling... i'm used to donating blood regularly and now looking at it all infected and prob mad at me too...

There were many tests that the doc ordered including all the hep viruses and tb and toxoplasmosis and so on as well as a HIV1 western blot. My last result was from oral mucosa. he ordered some other tests for the virus itself which I wasn't able to read off the paper properly...

Given that I'm a healthcare worker i've been vaccinated for hepB and TB. My last two step PPD test which was only a month ago was negative my last chest xray from a year ago was negative.

waiting for the results... i'm still in shock from all these that is happening... i hope u guys keep talking to me because I have this constant tears in the back of my eyes and my throat feels really heavy that I feel like crying every moment... hard to believe what the human mind is capable of going through... i just hope at least i do well on my exam despite this incredible ordeal...

Offline New Poz Guy

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Re: Im terrified... NEED HELP.
« Reply #53 on: August 04, 2011, 03:39:41 PM »
Hi scared,
I'm right behind you with this whole process. I was diagnosed 7/27 (thought is was 7/28 originally but I got the date wrong. It's been one week).
I went back to where I was diagnosed and I think I'm going to keep my treatment there. I liked the PA who I saw and will be working with. I gave them all the blood samples as well and we will meet next Fri., 8/12 to discuss results.
I share your same fears, frustrations, anxiety, and a whole bunch more specific to my situation.
I felt better after my intake and tests this past Tuesday, but I'm slipping back into a depressed state.
Thanks goodness for my job which occupies my time during the day and has been a great distraction but evenings and mornings are tough right now.
Still so many things to process...
We ARE fortunate to have the experience, strength, and hope from others on here who have been down this path a lot longer than we have.
Just know I'm right there with you with the variety of emotions this whole ordeal has caused.
Good luck on your exams and I truly believe we are BOTH going to pull through this...somehow.
I need to hold on to that thought dearly right now...
NPG
Diagnosed 7/27/11
Labs taken 8/2/11
Results 8/12/11 - CD4 428 18.6% VL - 96,939
Began Atripla 8/13/11
Labs taken 9/8/11
Results 9/13/11 - CD4 629 24.2% VL - 930 !!

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #54 on: August 04, 2011, 05:13:17 PM »
yea i was doing ok for a couple of days as I chose to deny it in my head i guess but now i'm really depressed... I'm going through all the stages of bereavement. I just have to pull through because there is no way i'm going to let this upset my family... i can't see them get upset at all... I have to do this on my own...

I can't say nice to see you here i wish i never met you at least not here or in this situation but it is nice to talk to you... we are in the same shoes... its horrible... I wanna be a doctor but i hate to be a patient... I care about the patients a lot when I talk to them but when I'm a patient I feel like no one cares... it's tough... it really is...

I'm still shocked that this is happening to me... I'm going through with the process of labs and this and that but I'm shocked that it cannot be... I'm so ashamed and disgusted of myself... 

Offline optimize

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Re: Im terrified... NEED HELP.
« Reply #55 on: August 05, 2011, 03:00:51 AM »
Hey, I got your message.  I cant seem to respond to it through this site.  Is there any other way that I can reach you?  send me your email through a message.  thx

Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #56 on: August 05, 2011, 08:24:59 AM »
Hey, I got your message.  I cant seem to respond to it through this site.  Is there any other way that I can reach you?  send me your email through a message.  thx

The PM feature activates after 3 postings so you should be able to PM now.

Offline Since2005

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Re: Im terrified... NEED HELP.
« Reply #57 on: August 07, 2011, 02:21:29 PM »
Hi Scare2b,

Welcome to the forum. Though you came here before me, I guess welcome is always welcome. I have read your thread and thought that I wanted to chip in but I got caught with my issues and dilemma that I forgot to write it here. As I have mentioned that you will get through this I meant " YOU WILL". I am not sure coming that from me is assuring as I am still dealing with this myself almost 7 years but I know the initial trauma will start to heal soon. The fact is no matter what you do, HIV status is not going to change. I will strongly suggest you while you are looking for medical help please also consider some counseling help. It helped me a lot. I remember I used to feel ‘ the shame and guilt’ and felt that I let my family down. I still do feel that somewhat and still trying to come into terms with my status and I hope and I know you will do lot better than me like lots of other people around here. I am kind of reluctant to give you my counsel (and there are some good reasons for that). All I wanted to say is that “ the initial trauma” will go away soon as I have experienced that in my situation. The way you are feeling is very normal. You are feeling ‘ the sense of loss’. I remember when I first heard my HIV result, I immediately thought life is going to be different for forever and it is. I would be lying if I said to you that it’s the same as it was before especially when it comes to dating. We are more restricted to that regard. I went to a recent gay HIV positive gathering in NYC and I have seen lots people there are so comfortable with their status as it seemed that they are making the most of it with the given situation and it made me see things differently and sure there are lots of cute positive guys out there as well :). I wish you the best with your exam and I know you will finish it well. Keep us posted on that otherwise you know we will be on your A..:)
« Last Edit: August 07, 2011, 02:24:25 PM by Since2005 »

Offline leatherman

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Re: Im terrified... NEED HELP.
« Reply #58 on: August 07, 2011, 06:23:20 PM »
so S2B, did you take this exam(s)? How'd it go?? Inquiring minds want to know.

hugs!
leatherman (aka mIkIE)


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

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #59 on: August 07, 2011, 06:27:32 PM »
ID apt in is a week... exam is in 3 weeks...  :'(

Offline spacebarsux

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Re: Im terrified... NEED HELP.
« Reply #60 on: August 12, 2011, 07:47:19 AM »
How you doing Scared2b?
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline joe327

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Re: Im terrified... NEED HELP.
« Reply #61 on: August 13, 2011, 11:49:45 AM »
I just found out for sure (2nd opinion) a couple of days ago that I was poz.  I got the first bit of news about 2 weeks ago.  I was freaking out at first but seem to have gotten over it pretty quick.  But at 56, half the people my age are taking meds for blood pressure, diabetes (which is worse than hiv nowadays), etc, etc.  But people in their 20's are dealing with health issues as well so all things considered, I'm a pretty lucky guy cuz even with the poz, I can be years away from even having to take meds (of any kind for any chronic illness) as indicated by t-cells and viral load.  As far as dating is concerned, I searched out only poz guys (I'm gay) and it seems they are more attractive than the general population as most of them take pretty good care of themselves.  A whole now realm of possibilities has opened up (I used to date just neg guys).  So it's not the end of the world in that respect either.

I think it's important to get healthy (but that's important whether you're poz or neg), so just start with "baby steps" and see where it leads.  Just start by taking short walks or something then gradually raise the bar.  That's what I'm doing.  I'm pretty healthy anyway, but am starting back to the gym and cutting back on alchohol and tobacco.  I'm buying some nicoderm today as a matter of fact.  It could be a blessing in disguise if you do all that, get good habits then a cure is found a year to 2 from now (esp. with stem cell research underway).  You'll be ahead of the game no matter what.  Good luck.

Offline spacebarsux

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Re: Im terrified... NEED HELP.
« Reply #62 on: August 13, 2011, 12:01:41 PM »
Hi Joe, sorry to hear about your diagnosis. But Welcome to the forums. It seems that you're coping quite well.

Ps- I think the mods might move this to a new thread relating to you.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #63 on: August 16, 2011, 05:22:15 PM »
My ID apt is tomorrow. I dont care anymore about what happens... secretly i do... days go by and I fluctuate between normal living and suddenly bursting into tears... crying is such a relieve... mornings are still difficult...

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #64 on: August 17, 2011, 08:09:55 PM »
My first lab is back. this thing is real and it is inside of me... denial hasn't helped it go away. I've found a couple of amazing friends on this site and they have been extremely helpful and without them i dont know what I would have done.

I decided that I'm going to be strong... I've been through a lot of obstacles in life and who knows i might die of something else other than this virus and I dont want it to define my life. I want to defy it.

My infection is fairly new and I caught it early, my numbers  T4: 379  VL: 100K

I'm still thinking about starting treatment or not but I definitely can't start yet since I have exams coming up and can't be dreaming vividly right before my exam lol or have diarrhea during my exam... but I am nervous about the stigma and being alone... I have this secret now and health wise I know that I'll be fine but socially it will be a challenge... Being gay was hard enough to find a decent man to be with long term but now there is another layer is added on top of that...

I hope that I can be strong(er) soon(er)...

xoxo

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #65 on: September 10, 2011, 02:27:09 PM »
Still terrified... still shocked... (since 7/26/11)

I started my 4th and final year of med school at the hospital and faced with seeing the scary end of the disease. This isn't easy... This whole year I will be going to different hospitals in different states and wont' be in one location and i can't get help anywhere because of it... I just don't know what to do... I'm usually a vibrant and a happy person and people liked to be around me but now I look and feel depressed and I can see how quiet I have become...

I found a couple of really good friends from here that I talk to by phone almost daily and I'm grateful for their support but it is so hard...


A couple of days ago I have had this bad chest pain that was really hurting me and I couldn't breathe so I took some Ibuprofen and it felt better so I knew it wasn't anything serious but then as soon as the meds wore off I had the pain again and one of the nurses told me to go to the ER. Even though I knew this is nothing to worry about, after work i went down to the ER in the hospital and they took me in quickly because I work there. Another medical student examined me and asked me if I have any medical condition. I said NO! I could not for the life of me admit to my status. it just wouldn't come out of my mouth. As if I really believed it! I never told them of my status. this is really stupid!!! It was then that I realized I need real help... that the chest pain was definitely due to stress... especially when all the tests and scans came out negative so they just told me to take the ibuprofen for pain to avoid complications from not breathing properly due to pain... anyways, i'm messed up mentally...



This is really hard... I want to have a positive view and a positive energy...



Offline Jablair09

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Re: Im terrified... NEED HELP.
« Reply #66 on: September 10, 2011, 03:51:02 PM »
Hello,

I understand why you're scared. I too have seen, and actually faced, the 'end stage' of this disease. When I was diagnosed, I was told I had six to twelve months to live AT BEST. That was November 20th, 1997. 14 years later, I am healthier than I have been in probably the past 25. I have had my hair fall out because my immune system wasn't even strong enough to fight off silverflake dermatitis...aka...dandruff. It covered my body in 50 cent size areas from my head to my feet. My entire  scalp was one solid scab...to the point that if I tried to brush my hair I would have huge chunks of hair pull out by the roots. I had to have my sister shave my head...or as close to it as she could get. I have had to deal with shingles and a host of other physical issues. HOWEVER, I am still here and the ONLY issue I have with HIV today, Thank the Lord above, is that I have to take a few pills once a day. I can tell you that #1, you are NOT going to die tomorrow or the next day or even the next week. What many people who deal with HIV do not realize is that the POWER OF POSITIVE THINKING will carry you a very long way. I am a strong willed person and I contribute THREE THINGS to my having survived not only HIV but THREE BOUTS WITH CANCER. #1, first and foremost, God and his grace, #2 my doctors and their ability to not only stop the progression of the HIV and help cure the cancer but to send everything into remission and keep my viral load suppressed to an UNDETECTABLE LEVEL and help my CD4 count rebound to an unbelievable 1249 from ZERO, and finally, and JUST AS IMPORTANTLY as the last factor, my committment and sustained mental attitude that I WILL BEAT THIS!! I have told anyone with whom I have ever spoken about HIV that "I have HIV...HIV does NOT HAVE ME!! and I don't just SAY these words...I BELIEVE THEM!! Once you get to that mindset, I am confident that you will find your old self coming back more and more. I know what you see in the hospitals is scary. I HAVE LIVED THROUGH THOSE ISSUES as have MILLIONS of other people living with HIV and, should you take the right steps, you will hopefully never have to go through the issues and complications that many of us have. According to my doctors, I have most likely been positive for approximately 30 years now.  Being in the medical field, you know there is no way to pinpoint exactly when a person contracts the virus. However, given my counts at the time of diagnosis, the doctors estimated that I would have had to have contracted the virus somewhere around 1981 or 1982...which given the events of that time period is highly likely to be relatively accurate.

I suppose the moral of this story is that if you set your mind that you are NOT going to let HIV rule your life then you take back the control that you obviously feel you have lost.

In my opinion, to which my life is a testimony, you can either LIVE with HIV or DIE from it. I choose to live as should you.

I mean not to sound abrupt. I'm merely a straightforward and outspoken advocate of those who choose to LIVE with HIV as opposed to the alternative.

Should you ever feel the need to chat, by all means do not hesitate to contact me. My email address is BlairJA2010@live.com and my name is Jeff.

Have a great day and be blessed! I know I have been!

Here if you need a friend!

Jeff

Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #67 on: September 13, 2011, 08:44:39 PM »
Wow, Jeff. Dayum. That was inspiring.

I had never heard about garden variety dandruff being a menace when one has low numbers. Who knew?!

I assume you must have good insurance coverage, too?

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #68 on: September 13, 2011, 08:54:42 PM »
Jeff thank you so much for such uplifting words. I assure you that I'm not afraid to die. I just don't want to suffer while getting there...

After I read your response and thinking about everything and doing some soul searching I decided that since I'm positive I mind as well be a positive person too. So since Monday actually I decided to be positive and worked everything inside my crazy head and let me tell you things are beginning to fall into place nicely.

I called a doctor's office in Canada and they said that he no longer is taking new patients and gave me his email to contact him myself. So I emailed him and told him my story and that I'm in the USA right now in medical school and so on and then he emailed me right back and asked if he could call me on my phone. I said of course.

He CALLED me and talked to me person to person. He was so incredibly nice that i was almost in tear to see how wonderful a doctor can be. He said well since you're working in the hospital I'm sure that you wont be able to come during the week. so tell you what, why don't you come see me on a Sunday and I will come in to see you. he said: "I will work around your schedule".

He asked me about my numbers over the phone and told me that most likely I was in seroconversion when I got the labs about a month ago also since I was negative in December. He reassured me and told me that everything will be OK and that short of getting rid of the virus all together he can help me with the rest of it and it will be life as usual.

So I was glad that I developed a positive energy that day because that's how everything fell into place.



This is was so different than my experience with the two doctors I saw in California. I was traumatized. So I'm going to see him on a sunday and to talk to him. I'm actually excited to see him!!


THANKs everyone. I know that I will have ups and downs but right now I'm up and without you guys i honestly would have been lost.


<3

Offline Ann

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Re: Im terrified... NEED HELP.
« Reply #69 on: September 14, 2011, 06:08:22 AM »
Wow Scared, that's wonderful news on all fronts. I'm glad you found such a caring, conscientious doctor - and I'm glad you found a positive attitude. Both are invaluable.

Onwards and upwards, eh?

Hugs,
Ann
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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 spacebarsux

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Re: Im terrified... NEED HELP.
« Reply #70 on: September 14, 2011, 06:13:36 AM »
I'm glad things are looking up for you Scared.  :)

« Last Edit: September 14, 2011, 06:18:33 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #71 on: September 14, 2011, 04:33:15 PM »
Hey my new wonderful friends!!

Over the weekend I went to the ER from chest pain. this is how bad my stress had got to me and on sunday night I decided to have a positive attitude and i can't believe how everything is starting to fall into place. And believe me I'm not lying.

Today I got a good news from my Blue cross insurance that the "investigation into possible pre-existing condition" is closed and everything is OK and my claims will be processed! how cool is that?!

Health-wise I feel better too. my lymph nodes were really swollen but they have now reduced in size which is really good. I did have some minor seborrheic dermatitis in july and august which is also totally gone. Aside from that I never had any other symptoms.

I just got an email from my doctor in Canada who I'm going to see that reads:

"howdee, absolutely ok for sunday - no need to call the office. you have my email to email me when you get up in the morning and when i arrive i will email you as well, i plan to be here around 1030 or 11ish or so great- bring in whatever labs you have and if you want to bring in someone with you- that is ok. try not to worry- we can get you through all of this"


He is such an example of the kind of doctor I want to be and I will be. This ordeal showed me the real human side of medicine and even though I was truly a caring person already, I will be even more caring because i can see how much difference it makes!!


I will update you guys soon. My exam is on Monday this week and also another one next Monday so after that I will be able to at least get out of my solitary confinement and get some much needed EtOH in my system lol.

<3 Hugs <3
« Last Edit: September 14, 2011, 04:40:01 PM by scared2b »

Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #72 on: September 14, 2011, 07:56:51 PM »
That's great news.

Remember there are co-pay assistance programs to cover any copays.

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #73 on: September 14, 2011, 09:53:25 PM »
I didn't know about this. I'll research on it once I'm done with my exams but may be if you guys have some links or information I would appreciate your guidance.

thanks a lot!!

Offline leatherman

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Re: Im terrified... NEED HELP.
« Reply #74 on: September 14, 2011, 11:21:22 PM »
good luck on those exams! ;)

and for the co-pay assistance, just visit the website for the medication you'll take and there is information there about signing up for the assistance.
leatherman (aka mIkIE)


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

Offline elise1975

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Re: Im terrified... NEED HELP.
« Reply #75 on: September 22, 2011, 01:45:58 PM »
hi scared2b
first off simmer down! i am also new to this infection... and yes it sucks. BUT, i have had the detailed talks with my drs about this... first things first tho, and find the best infectious disease dr you can in your area. They know whats up and can really tell you whats new and how it is. When i went into mine for the first time BALLING my eyes out... they reassured me that they dont let people get AIDS status anymore.. that the drugs they have now keeps it in the HIV status, and the only people that die of the disease are the ones that dont listen to what they say or dont take care of themselves. also, i found that going to a center (NOT a support group) and talking one on one to someone who has it and is doing awesome living with it helped me so much that i cant even explain. I did try to go to the support group 3 weeks after finding out and what i found there was a bunch of people who were defiant, pissed off, and in a place i didnt want to be... it was a very negative experience that i wouldn't wish on anyone.
Now the costs... i found out about ADAP, which is amazing, and is there to relieve your stress of wondering how your going to pay for anything and what if you cant afford insurance.... which is totally covered. i also discovered that our red cross here also pays for your gas to and from your dr or pharmacy... not sure about where you are and if they do that, but its something to look into. i think in the first 2 months i had at LEAST 15 drs appts... it adds up. but since everything has settled down, i go to a dr maybe once every 2 months (not just my ID dr).
biggest thing is tho, please dont stress... HIV is not what you see in the movies, its not what you hear jokes about, it has come so far in science that, if kept under control, is less work  than diabetes.  most people i talk to are undetectable, and have better cd4 counts than i can ever imagine. dont go to websites online because its all black and white... there is no in between because they are they to scare people not to have sex ( and who doesn't want sex??? :). your best bet to settle down is to talk to people who have it and are doing awesome (some chat rooms are super useful) or a center that you can talk to someone who has it. its not what it was and remember... your mind is your worst enemy right now. just because you sneeze does not mean your dying. we all get colds, we all get fevers, we all get a pimples!!!! youll be fiiiine  ;D

Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #76 on: September 22, 2011, 10:11:22 PM »
Here's some info, but it's about a year old. Basically most of them have co-pay assistance.


http://www.thebody.com/content/art51554.html

The info above is dated b/c now Truvada/Atripla/Isentress start covering without any minimum. It used to be that they kicked in after a certain amount. My Isentress and Truvada co-pays are $25 each and with these programs it's free so i"m saving $50/month.
« Last Edit: September 22, 2011, 10:13:40 PM by Inchlingblue »

Offline buginme2

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Re: Im terrified... NEED HELP.
« Reply #77 on: September 26, 2011, 04:52:21 AM »
the only people that die of the disease are the ones that dont listen to what they say or dont take care of themselves.


Really?

Offline jkinatl2

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Re: Im terrified... NEED HELP.
« Reply #78 on: September 26, 2011, 03:45:48 PM »
they reassured me that they dont let people get AIDS status anymore.. that the drugs they have now keeps it in the HIV status, and the only people that die of the disease are the ones that dont listen to what they say or dont take care of themselves.

This is dreadful advice, and a terrible judgment on people who do indeed get sick and die, despite doing all the "right" things. I know you are recently diagnosed, but you might want to get up to speed on the reality of HIV before you post stuff like that.

Daddy Tim did all the right things. So did a dozen or so people from these forums we have buried in the last couple of years.

I don't think people need to fear HIV. I do think people need to respect it.

To the OP:

It's great news that you have found a terrific doctor! That's probably the most important relationship you can have right now!

Your numbers look good so far, and I totally understand your wanting to take a "wait and see" approach to meds. Your emotional state, like your numbers, will likely bounce around for a while before settling down. Having friends, support, that good doctor, and your awesome goal of finishing medical school  will surely help get you through the roughest parts.

It looks like you have the will and the fortitude to deal with this diagnosis beautifully.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

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Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #79 on: September 26, 2011, 07:55:31 PM »

Daddy Tim did all the right things. So did a dozen or so people from these forums we have buried in the last couple of years.


She could have phrased it better but I'm pretty sure that she was not referring to LTS with HIV/AIDS but rather to the newly diagnosed.

And she's basically right: for anyone newly diagnosed who has access to good health care and to ARV meds, they will by and large do fine as long as they monitor the progression and go on meds when deemed necessary.

Offline jkinatl2

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Re: Im terrified... NEED HELP.
« Reply #80 on: September 26, 2011, 08:20:46 PM »
I do not wish to
She could have phrased it better but I'm pretty sure that she was not referring to LTS with HIV/AIDS but rather to the newly diagnosed.

And she's basically right: for anyone newly diagnosed who has access to good health care and to ARV meds, they will by and large do fine as long as they monitor the progression and go on meds when deemed necessary.


I do not wish to hijack this thread, but I think the phrase "by and large" paints with a rather broad brush. I do not wish to see people accused of not being "good"patients when and if they get sick. I am sure you do not either. And that's what we set people up to endure when we allow statements like that to go unchallenged.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

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Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #81 on: September 26, 2011, 09:33:34 PM »
I do not wish to

I do not wish to hijack this thread, but I think the phrase "by and large" paints with a rather broad brush. I do not wish to see people accused of not being "good"patients when and if they get sick. I am sure you do not either. And that's what we set people up to endure when we allow statements like that to go unchallenged.




The fact is that HIV is completely manageable for the newly diagnosed who have access to good health care.


I think that was the point she was trying to make.

We are not talking about LTS or those who do not have access to good health care.

Offline jkinatl2

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Re: Im terrified... NEED HELP.
« Reply #82 on: September 26, 2011, 10:40:45 PM »

The fact is that HIV is completely manageable for the newly diagnosed who have access to good health care.


People with major depressive disorder and other mental health issues should not take Sustiva. This fact gets swept under every convenient rug, and it leaves suicidal people feeling like failures in it's wake. Please continue this conversation in another thread.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

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Offline leatherman

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Re: Im terrified... NEED HELP.
« Reply #83 on: September 27, 2011, 12:08:49 AM »
I agree that "by and large" paints just too broad of a swath. Stating it like that seems to forget, or just ignore, that 33% of people diagnosed with HIV are diagnosed (usually when they are sick and present at a hospital) already at the level of AIDS. That means that every day people are diagnosed with AIDS right off the bat. Then that AIDS label is likely to stick with them throughout the rest of their lives too. Too often everyone seems to forget that not everyone is disagnosed early enough to prevent having severe immune system degradation, starting meds immediately with no time to worry or fret about side effects, and no say in disclosing to friends and family as they lie in a hospital hoping HAART works in time (as it frequently but not always does) to prevent death.

So AIDS-diagnoses and AIDS-deaths happen every day that have nothing to do with not following doctor's advice. Any doctor that would "reassure someone that they dont let people get AIDS status anymore" really just isn't telling the whole truth; but is probably just trying to placate a nervous patient who was diagnosed well before they got sick (or perhaps even needed meds) and who has adequate access to meds.
leatherman (aka mIkIE)


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Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #84 on: September 27, 2011, 08:27:17 PM »
People with major depressive disorder and other mental health issues should not take Sustiva. This fact gets swept under every convenient rug, and it leaves suicidal people feeling like failures in it's wake.  


That would be more of a concern if Atripla were the only game in town, but there are several other options.

Leatherman, you make a very good point that some people get diagnosed only after they already have advanced AIDS. More reason to get tested and know one's status. There's no need to allow it to get that bad in the developed world.

Heck, even in the USA it's not always a guarantee that there will be treatment for everyone who needs it.

The point is, and it bears repeating: if there is health care coverage and if it's caught in time then it's manageable. I agree that those are two very big 'Ifs.'"
« Last Edit: September 27, 2011, 08:32:58 PM by Inchlingblue »

Offline skeebo1969

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Re: Im terrified... NEED HELP.
« Reply #85 on: September 27, 2011, 08:52:12 PM »
Hello,

I understand why you're scared. I too have seen, and actually faced, the 'end stage' of this disease. When I was diagnosed, I was told I had six to twelve months to live AT BEST. That was November 20th, 1997. 14 years later, I am healthier than I have been in probably the past 25. I have had my hair fall out because my immune system wasn't even strong enough to fight off silverflake dermatitis...aka...dandruff. It covered my body in 50 cent size areas from my head to my feet. My entire  scalp was one solid scab...to the point that if I tried to brush my hair I would have huge chunks of hair pull out by the roots. I had to have my sister shave my head...or as close to it as she could get. I have had to deal with shingles and a host of other physical issues. HOWEVER, I am still here and the ONLY issue I have with HIV today, Thank the Lord above, is that I have to take a few pills once a day. I can tell you that #1, you are NOT going to die tomorrow or the next day or even the next week. What many people who deal with HIV do not realize is that the POWER OF POSITIVE THINKING will carry you a very long way. I am a strong willed person and I contribute THREE THINGS to my having survived not only HIV but THREE BOUTS WITH CANCER. #1, first and foremost, God and his grace, #2 my doctors and their ability to not only stop the progression of the HIV and help cure the cancer but to send everything into remission and keep my viral load suppressed to an UNDETECTABLE LEVEL and help my CD4 count rebound to an unbelievable 1249 from ZERO, and finally, and JUST AS IMPORTANTLY as the last factor, my committment and sustained mental attitude that I WILL BEAT THIS!! I have told anyone with whom I have ever spoken about HIV that "I have HIV...HIV does NOT HAVE ME!! and I don't just SAY these words...I BELIEVE THEM!! Once you get to that mindset, I am confident that you will find your old self coming back more and more. I know what you see in the hospitals is scary. I HAVE LIVED THROUGH THOSE ISSUES as have MILLIONS of other people living with HIV and, should you take the right steps, you will hopefully never have to go through the issues and complications that many of us have. According to my doctors, I have most likely been positive for approximately 30 years now.  Being in the medical field, you know there is no way to pinpoint exactly when a person contracts the virus. However, given my counts at the time of diagnosis, the doctors estimated that I would have had to have contracted the virus somewhere around 1981 or 1982...which given the events of that time period is highly likely to be relatively accurate.

I suppose the moral of this story is that if you set your mind that you are NOT going to let HIV rule your life then you take back the control that you obviously feel you have lost.

In my opinion, to which my life is a testimony, you can either LIVE with HIV or DIE from it. I choose to live as should you.

I mean not to sound abrupt. I'm merely a straightforward and outspoken advocate of those who choose to LIVE with HIV as opposed to the alternative.

Should you ever feel the need to chat, by all means do not hesitate to contact me. My email address is BlairJA2010@live.com and my name is Jeff.

Have a great day and be blessed! I know I have been!

Here if you need a friend!

Jeff

Thanks for sharing that Jeff, it is a testimony to living life through many hardships indeed....

I hope you are able to have many blessed days.....

Skeebo
I despise the song Love is in the Air, you should too.

Offline Ann

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Re: Im terrified... NEED HELP.
« Reply #86 on: September 28, 2011, 06:25:06 AM »
That would be more of a concern if Atripla were the only game in town, but there are several other options.

Very true that, but unfortunately Atripla (or more to the point, Sustiva) is all too often prescribed as first-line treatment without any mental health screening. Even when people go into it with no mental health issues, when Sustiva creates them, many doctors discount the problem and try to persuade the patient to continue on with the combo because it's doing a good job on the virus.

I've seen this happen time and time again, both here on the forums and in real life too. Many doctors are reluctant to change a patient's combo when it's working as far as the virus is concerned, and that makes the patient reluctant as well, despite not being able to get restful sleep, or depression, or anger issues etc.

Also, with Sustiva, some people don't realise how much it is affecting them. Quite a few times over the years I've heard of people having their friends or family confront them about their increasingly negative attitudes and irritability etc - and the person hadn't even noticed how much they'd changed. Part of the problem is how it can sneak up on you over a period of months.

I'll be happy when Sustiva is no longer used as a first-line treatment. Sure, many people have no problems with it, but many people do have problems. It does its job on the virus and does it very well, but it can be devastating mentally for too many, in my opinion.  I'll be glad when people no longer have to take that chance with their mental health.
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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 elise1975

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Re: Im terrified... NEED HELP.
« Reply #87 on: September 28, 2011, 05:54:09 PM »
let me clear up what i mean by the who not listening to their dr dont take care of themselves and dying ... i went to the dr in a PANIC after i went to a "support" group meeting. that meeting was filled with people who refused to take their meds, had unprotected sex with people because "i dont care, they did this to me" mentality and also had sex with other hiv positive people so they are just "sharing" their virus. this is what i mean. Almost everyone at this "support" group personified what your NOT supposed to do when you discover you have this virus. and yes i went to the dr frantic and in tears because of what i saw and how horrible people were on the inside and out... he reassured me that i caught it early and if i take care of myself i wont get to such a point. he also told me that i need to surround myself with people who are positive in attitude... not people who are so full of hate towards themselves and society that they dont care what becomes of themselves and others. this is what i mean by taking care of yourself and listening to your dr.. its pivotal to your health.  sorry if i offended anyone.

Offline Inchlingblue

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Re: Im terrified... NEED HELP.
« Reply #88 on: September 28, 2011, 08:28:37 PM »
 sorry if i offended anyone.

Not that I speak for everyone but I don't think you offended anyone.

Welcome to the forums. ;)

Ann, as usual, you bring up very good and salient points. I had to insist with my doctor at the time that I wanted to start treatment with Isentress/Truvada and he was reluctant. Granted, it was a couple of months before it was  a "recommended treatment option." He was concerned about adherence with twice a day dosing. I held my ground that these were the meds I wanted. I think that few patients would have been as, ahem, pushy, as I was.

This was in 2009, almost an eternity ago. Today, Isentress/Truvada is not so exotic and there's Complera, etc.
« Last Edit: September 28, 2011, 09:56:31 PM by Inchlingblue »

Offline Ann

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Re: Im terrified... NEED HELP.
« Reply #89 on: September 29, 2011, 09:13:15 AM »
I think that few patients would have been as, ahem, pushy, as I was.


It certainly does pay to be pushy with your doctor, particularly if you can back up your demands with current, accurate knowledge. :)
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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 scared2b

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Re: Im terrified... NEED HELP.
« Reply #90 on: October 12, 2011, 08:31:55 PM »
Hey everyone.

I just wanted to update you. I finally got my scores and passed my exams :)) and on my way to get my MD in March. And coincidentally I got the result of my CD4 count today and it was 500!!!! So I went up from 379 to 395 to 500 since August.

I'm not on any medications yet and this just buys me some more time until I figure things out. I haven't been as depressed as before but that's mainly because I'm not thinking about it as much but at times I think and still can't believe that I am positive... oh well...

thx for being there...

Offline leatherman

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Re: Im terrified... NEED HELP.
« Reply #91 on: October 12, 2011, 10:44:35 PM »
WooHoo! That's excellent news about the exams! and good news about your cd4 count too!
(what about that viral load??)
leatherman (aka mIkIE)


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

Offline spacebarsux

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Re: Im terrified... NEED HELP.
« Reply #92 on: October 13, 2011, 12:37:58 AM »
Congrats Scared2b, that's great news!
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #93 on: October 13, 2011, 01:02:01 PM »
Thanks friends. There is a reason my doc didn't do VL. He's such a sweetheart. read bellow. But my doc just emailed me about the T4 count and told me about it. I just sent my application for drug plan in Canada based on my income which as a student is zero lol, and once its approved I'll visit my doc and do another set of numbers and see where I am.

It seems that regardless of my numbers I will have to be on medication if I am to practice medicine in Canada. Apparently if I want to be a part of the Medical council of Canada I have to be at an undetectable VL levels (this is why we didnt do VL this time) and I have to disclose my status to the council. This is to protect my patients and myself from litigation. So I'll have to figure these out soon... He figured since I'm not doing any invasive procedures yet there is no urgency to disclose and all that so we're taking it one step at a time.

Offline jkinatl2

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Re: Im terrified... NEED HELP.
« Reply #94 on: October 13, 2011, 02:23:15 PM »
Thanks friends. There is a reason my doc didn't do VL. He's such a sweetheart. read bellow. But my doc just emailed me about the T4 count and told me about it. I just sent my application for drug plan in Canada based on my income which as a student is zero lol, and once its approved I'll visit my doc and do another set of numbers and see where I am.

It seems that regardless of my numbers I will have to be on medication if I am to practice medicine in Canada. Apparently if I want to be a part of the Medical council of Canada I have to be at an undetectable VL levels (this is why we didnt do VL this time) and I have to disclose my status to the council. This is to protect my patients and myself from litigation. So I'll have to figure these out soon... He figured since I'm not doing any invasive procedures yet there is no urgency to disclose and all that so we're taking it one step at a time.

That is some top-notch work on the part of your doctor! It's terrific that you are getting good care!
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #95 on: October 13, 2011, 08:00:41 PM »
I know. i'm blessed. he's so amazing and sweet. he's a really good example of a great compassionate doctor. I want to be like him.

Offline Ann

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Re: Im terrified... NEED HELP.
« Reply #96 on: October 14, 2011, 08:03:20 AM »
I know. i'm blessed. he's so amazing and sweet. he's a really good example of a great compassionate doctor. I want to be like him.

I'm so happy for you (and your future patients) that you have such a powerful, positive role model. Give him a hug for me, ok? Thanks. :)
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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 scared2b

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Re: Im terrified... NEED HELP.
« Reply #97 on: October 14, 2011, 08:22:15 AM »
Thanks Ann

He actually hugged me already when we finished our session and told me that you have to promise me you won't let this virus infect your soul and you shouldn't change a thing about your plans in the future. I won't lie I had tears in my eyes...


Offline Ann

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Re: Im terrified... NEED HELP.
« Reply #98 on: October 14, 2011, 08:25:18 AM »

you have to promise me you won't let this virus infect your soul


I like that. What a wonderful way to put it. This doctor is definitely a "keeper". Hang on to him! :)
Condoms are a girl's best friend

Condom and Lube Info  



"...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 scared2b

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Re: Im terrified... NEED HELP.
« Reply #99 on: October 17, 2011, 09:36:32 PM »
yea my doctor's an angel in my eyes. He emailed me and told me all this while he was out of country on vacation! I have so much love and respect for him.

I wanted to tell you guys that today I started rotating in a youth HIV+ clinic and my attending physician here in Chicago is so amazing. He spends so much time with pts and talks to them about everything and I'm learning so much from just their encounters let alone medical stuff... I was there all day and I thought about you guys a lot.

I'm still struggling with my diagnosis, if I told you otherwise I would be lying. I dont think I will ever be OK with it but I'm learning to adjust myself and deal with it. These kids that came today were girls and boys, gays and straight and it was amazing to see the demographic variation that came just today alone. I was amazed.

The worst part was when me and the other students were talking or when everyone was talking to our attending. I felt so weird. I felt like I'm hiding something which I am. I never want anyone to know and I thought after I came out of closet I was so free that I didn't have that weirdness anymore but now there is this...

the good news is that the entire HIV care center is under construction because the care has switched from procedures to chronic care so they are changing the whole set up.

guys you never know... i might end up choosing to work with HIV kids! I really enjoyed being around them and just wanted to hug them but I had to hold back tears and emotions...

 


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