Author Topic: Sorry to join y'all, but here I am ... (Read 12807 times)

jabez · « **on:** October 13, 2007, 12:30:51 am »

Howdy, everyone! I'm a single 42-year-old male in the Deep South, and I found out in July that I'm positive. You guys have been helping me TREMENDOUSLY during the past two months as I try to learn how to master my situation.

I had never in my life been tested for HIV. Last November, my health began to seriously deteriorate. Almost daily, I was running a high fever, sweating, freezing, having awful headaches, sore throats, trouble swallowing food. I began to lose weight and to feel terrible all the time. I decided it must be a sinus infection (!!) so I treated myself with Sinutab for about three months.

Finally, in March 2007, I learned that someone in my small town had died of TB complications. After returning home from her funeral, I went straight to the emergency room to be checked for TB, pneumonia, throat cancer, and any other strange diseases that might be causing my fever, headaches, and sore throats. I spent an entire Saturday evening in ER. There were chest X-rays, sinus X-rays, blood tests, candidas tests --- you name it, I had the test. All negative. The doctors could find NOTHING wrong with me. I was diagnosed with a Fever of Undetermined Origin (spiking at nearly 105 while I was in ER), and I was given an antibiotic and sent home. Before I left ER, I requested an AIDS test. After I filled out a thousand forms swearing that I understood about false negatives and false positives, the blood was drawn and sent to the lab. I was told that I would be contacted in 7-10 days if the result was positive. I was told that I would NOT be contacted if the result was negative. (This is the craziest thing I've ever heard.) So for two weeks, I sat around mulling over sexual mistakes of the past, but the hospital never called. The results were obviously negative.

For about sixty days, I felt much better. (I guess the antibiotic was working.) But then my symptoms began appearing again -- chills, night sweats, headaches, a throat so sore I could barely swallow, painful headaches. In July 2007, I found myself finally sitting down with my doctor to determine what was wrong. He took some blood, and about five minutes later he was telling me, ''You are SERIOUSLY anemic. You're producing practically no red blood cells at all.'' This was pretty frightening, and it led to a round of tests at the hospital to be sure that I didn't have liver disease or a heart problem. Everything was negative. My doctor said that he couldn't understand why my fever was so high and why the RBC count was so low. I commented that it sounded like HIV, but that I had been tested in March and the result was negative. His eyes opened wide, and he said, ''I have a lab report from your blood work in March, and there is NO RESULT on the HIV test. Through some breakdown in procedures, the emergency room failed to enter your result.'' I was immediately terrified, and with a shaking voice, I asked him to run the test again. Sure enough, the Western Blot was positive.

I started a high iron diet to get my RBC's up while I waited for my appointment with an Infectious Diseases specialist. The appointment was scheduled for the first week in September. From reading these forums, I felt confident that my CD4 count would be at LEAST 300. A few days later, the shattering results came back -- CD4 count = 68; Viral Load = 467,000. I was horrified! This wasn't HIV at all -- this was the dreaded AIDS. My ID physician prescribed Bactrim (of course), and I literally RAN to the pharmacy to get the prescription filled. From all the information on this site, I had already tentatively selected my medication (Sustiva + Truvada), but I received the discouraging news that a resistance/genotype test would need to be performed, and I would be waiting at least another week before I could take the first pill. Fortunately, there were no mutations.

Finally, on the evening of September 21st, I took my first dose of Atripla. And now I feel I've been through the wringer --- diahrrea, a rash all over my back and butt, Sustiva hangovers in the early mornings. We didn't take a CD4 count in early October, but my VL had dropped from 467,000 to 20,000 after only 12 doses of medicine. My next appointment will be in early November, when (hopefully) I will be undetectable (or close to it).

I've only told a few people about my situation --- my parents, my brother and sister, my best friend, and my longtime girlfriend. All of them have been amazingly supportive, although they would like to KILL ME for being so stupid. My other source of support has been this forum. You guys have helped me choose a medicine, have helped me work through the side effects, and most importantly have given me HOPE for the future. Thanks for being here. This can be the loneliest, saddest disease in the world, but this forum has been like a bright shining light that helps me see the way. Thanks to you all.

thunter34 · « **Reply #1 on:** October 13, 2007, 12:43:46 am »

Sorry for what brought you here, but happy you have joined us nonetheless.

Welcome, Jabez.

milker · « **Reply #2 on:** October 13, 2007, 12:46:39 am »

Hello jabez,

I'm glad you found the forum and that the posts helped you with your situation. Welcome to the forums, jabez, it sounds like you have done the right thing and that you should soon achieve an undetectable level.

Milker.

komnaes · « **Reply #3 on:** October 13, 2007, 09:48:49 am »

Quote from: jabez on October 13, 2007, 12:30:51 am

I've only told a few people about my situation --- my parents, my brother and sister, my best friend, and my longtime girlfriend. All of them have been amazingly supportive, .. This can be the loneliest, saddest disease in the world, but this forum has been like a bright shining light that helps me see the way.

I feel the same way too Jabez

This forum has been tremedously even life-savingly helpful, and it's great that we have supports from your partner, friends and family. Not many of us can count on people we're close to being understanding and supportive.

I know what you mean what you say that it's a lonely and sad disease, but it doesn't have to be as long as we maintain a good attitude about it. I am forcing myself to go out more, start doing more exercises and even have started to forbid some of my friends to keep asking me questions "how are you feeling" at the beginning of every conversations.

We're in for a long haul!

Best wishes, Shaun

jabez · « **Reply #4 on:** October 16, 2007, 12:14:48 am »

Thanks for the kind words, guys. I look forward to chit-chatting with y'all on a regular basis.

Falkore · « **Reply #5 on:** October 16, 2007, 03:31:08 am »

Jabez,

Welcome. While I wish this forum was not necessary, I am glad that it is here, and glad that you found us. There are people here who have a wide range of experience with this virus. People who have been living with it for years, and people like you who just recently discovered. People who know almost everything about HIV (granted this is a bit of a stretch), and people who are just learning. Use the knowledge of everyone here to help you continue to make choices that best fit your life.

I am sorry to hear that the Atripla is causing you a rash. I do hope that if you choose to continue on the Atripla that the rash and any other side effects reduce or disappear. I have been on it for over a year now and am truly grateful. I had a very minor reaction to it when I first started, the weird "acid trip" type of feeling. Now I only get a drunk feeling if I stay up too late after taking the meds. I prefer to take it right before bed and have no problems with side effects. As you can tell from my signature line that it has had a wonderful reaction. My VL dropped right away and my CD4 jumped almost 200 points. Now, it seems to be going back down slowly but I am not too concerned as of yet.

I hope that you continue to do well. Always feel free to ask questions and trust that the answers are well planned out and very informed.

Falkore

frenchpat · « **Reply #6 on:** October 16, 2007, 12:01:43 pm »

Jabez,

I am sorry you had to join us too!

But now that you are here, make yourself comfortable. I hope your health will improve and that you'll stay well for a long time.

Be most welcome.

Pat

LACboi · « **Reply #7 on:** October 20, 2007, 01:59:21 am »

Sorry for your diagnosis, but at least you found this site. There are a lot of great members here, all with great personal advise. I wish I would have known about this site back in Nov 2002 when I was Diagnosed, fortunately I did find this site back in June 2005. All the members where wonderful and very helpful, and that year was the first AMG which I'm glad I got to join and meet some of these great people in person. I hope you find all the answers to all your unanswered question here, and remember there are no dumb questions. Well again welcome to the forum and hope you can find some people here that can help you or even make friends with.

Well take care, and I hope to be able to chat with you more here in the forum

northernguy · « **Reply #8 on:** October 23, 2007, 07:51:34 pm »

Welcome jabez. Was your doc able to determine if the Bactrim or Sustiva was causing the rash?

jabez · « **Reply #9 on:** October 31, 2007, 09:10:13 pm »

Thanks for the replies, guys.

Northernguy, I actually had a brief reaction to the Bactrim a few days after I started taking it. I knew that it was Bactrim-related, because I hadn't started the Atripla yet. Then, eleven days into the Atripla regimen, I had another rash. (Sustiva this time.) But both rashes were manageable and went away on their own after a few days (with a little help from Benedryl) without skipping any doses.

Esquare · « **Reply #10 on:** November 23, 2007, 01:28:53 am »

Jabez,

I read your story and thought I would say hello. Like you, I am from the deep south and I've known that I've been positive for a bit over a year now. I see that your numbers are dramatically improving with Atripla, its a powerful combination. My numbers were similar and after a full year of treatment my immune system has rebounded nicely. I laughed a bit about your running to the pharmacy to get that prescription filled as I was doing the same thing. I could not get that medicine in me quick enough for some protection.

Any time you would like to chat feel free to PM me.

Anyway, I just thought I would say hello while I was enjoying my sustiva high on thanksgiving.

Andy Velez · « **Reply #11 on:** November 23, 2007, 05:17:09 pm »

Jabez, I'm sorry about what brought you here -- and like everyone else I'm glad you found your way here.

You can ask questions and/or discuss anything you would like to.

You mentioned your longtime gf. I'm wondering if she has gotten tested. If you had unprotected intercourse with her that should be a priority for her. You may already know this, but you can have intercourse the safer way by just making sure to wear a condom everytime.

There's a lot of information and support here so I hope you will feel free to avail yourself of it.

Cheers,

cayucosguy · « **Reply #12 on:** November 24, 2007, 06:36:49 pm »

Jabez -

Welcome to one of the best support forums/groups on the net. Sorry you have to be here, but glad you found the site.

As someone who has lived with this 'lil bugger for almost a quarter century, I am here for you anytime you want to chat. PM me for msgr info and/or phone number.

Vince

PS - I miss the south (lived in Baja Alabama, Mississippi, Lousiana)! (As strange as that sounds to my family in CA

)

minismom · « **Reply #13 on:** November 25, 2007, 03:57:11 pm »

Jabez,
Welcome! I'm also new to the site and have found it amazingly helpful and full of awesome people. Mini was put on Bactrim 3x/day on Mon, Tues, and Wed when she was first diagnosed. After a while, we noticed a crazy rash all over her body. She was tested for all kinds of issues ie: strep, hives, skin infections, yadda, yadda. After constant rash for a few months and crazy spiking fevers (107), she was taken off Bactrim and PID (pediatric Infectious Disease) doc decided she had developed an allergy to sulfa drugs. She went off Bactrim and the rash went away. Maybe something to talk to your doc about.

Mini's Mum

BirdBear718 · « **Reply #14 on:** November 29, 2007, 09:38:57 pm »

Jabez --
Welcome to you. This site is a fantastic place. The people are very supportive and understanding.
I am so glad you have such a supportive family. That is great.
They ARE going to ask you a lot of questions...get ready. Don't get annoyed. By helping them understand what you are going through, will actually help yourself.
Some of the questions will trigger questions in yourself....write them down and call the Infectious Disease doctor. Your ID doctor will help you through this.

Some pointers:
1. Make your Infectious Disease (ID) doctor, your new best friend. Call them whenever you need. Ask them questions.
2. Take your meds as prescribed -- set your watch alarm if necessary, or your cell phone alarm, whatever you need.
3. Keep your body healty
4. Post here and post often. Those who have experienced certain things will share, others will offer support.

Hugs to you!

jabez · « **Reply #15 on:** December 05, 2007, 12:30:49 am »

Vince, thanks for the offer to PM. I will definitely take you up on that! (I am in Mississippi.)

Andy, I appreciate the reminder about unprotected sex. I guess I learned my lesson the hard way, but fortunatley haven't made that mistake again in a long, long time. I haven't infected anyone else.

Again, thanks to all of you. You have definitely made these dark days since July 30th a lot more bearable.

Jabez

DCGUY2007 · « **Reply #16 on:** December 07, 2007, 01:25:00 am »

Hi Jabez,

Sorry to hear about your situation. At least you have a place to come to and talk now. Welcome

Lakis · « **Reply #17 on:** December 08, 2007, 03:13:14 am »

I'm sorry you had to join us.But I'm really glad you found way to us.I'm sure you will get all the love,soupport and understanding.
Stay healthy:-)
Lakis

oh my... · « **Reply #18 on:** December 08, 2007, 03:30:36 am »

I'm gald you also found your way here. This forum definitely lets us know we're not alone and there is a network we can reach out to.

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Author Topic: Sorry to join y'all, but here I am ... (Read 12807 times)