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HIV Life >> Living With HIV

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Trav
Member

Reged: 07/24/12
Posts: 34
Loc: CA, USA
My story
      #276866 - 06/26/14 01:30 PM

I was asked to share my story since I'm back.
This time of year (National HIV testing day) two years ago I went to go tested. I was also convinced to get tested because I had a rash on my left outer thigh that wouldn't go away.
I went to the county clinic answered questions and waited accordingly to be tested. One week later on July 3, 2012 I received a call to come in and get my test results. My test results showed I was negative for all other STD/STI except HIV. I still had the rash even though they gave me a shot of penicillin thinking I had syphilis. I did everything I ws suppose to do I found a Dr., blood work, and started meds by the end of August. At that time my CD4 count was 242 and my viral load was 500,000 , which indicated I had been infected for awhile and looking back I most likely contracted it in 2009 and was misdiagnosed with Celiac disease. The regimen my Dr prescribed me at the time was Truvada, Prezista, and Norvir and I hadn't felt sick until I started taking the meds. I was on the meds for the most part for nine months but I never became undetectable and I was still dealing with side effects. I switched to another Dr. and he switched my meds but I never took them cause the pills were larger than my previous regimen and at that point I was done taking meds, Dr., appointments, blood draws etc. I had stopped taking my meds around April-May of 2013. By January of 2014 I was hospitalized with an opportunistic infection called thrush in my mouth and throat and for those who know regardless of your CD4 count if you develop an OI it's and AIDS diagnosis. While I was in the hospital my viral load was 161,000 and my CD4 count was 389 ( I'm still not sure how my number were better but I was sicker than from when I first tested positive). I have now gained 15 of 30 lbs I lost while I sick and I found another Dr who is listening to me and switch my meds to Stribild which was the medication I wanted in the beginning but was denied from both of my previous doctors.

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iam1
Fanatic

Reged: 06/17/09
Posts: 165
Loc: Georgia
Re: My story new
      #276873 - 06/26/14 05:21 PM

Trav, Thank you for sharing! I sometimes forget what people go through (finding proper care, the correct meds, a good support system) because it's been so long ago when I first tested positive. But, I have never forgotten the stress and inner turmoil I had to deal with.

Without making apologies for anything that has happened to you please allow me to try to explain why things were done the way they were and some of their mistakes. (This does NOT mean things should be done this way for anybody else!)

The rash - it is quite possible that you did have syphilis. But, that is NEVER a reason to give a person penicillin without testing and confirming the diagnosis. There are about a million reasons a person can have a rash. If they had done the test for syphilis (You stated you tested negative for STI's.) then they should have treated it.

One of the first tests people get these days is a genotype test. This tells the doctors the best medications to be used to treat your HIV. HIV these days has been passed through many people. With each person HIV goes through that person's treatment is carried like a file. HIV builds up these files remembering what medications have been used previously. HIV mutates to build up resistance to medications in its files. Some medications work better than others. The doctors like to use what works best first, because it's easier to keep HIV down then it is to get the levels down. When it's down you're working to kill fewer HIV in the body.

Some people get infected with a strain of HIV that is resistant to one or more medications. It may be 1 medication. Or, it may be an entire class of medications. Doctors work to find medications that can be used to best treat each individual's HIV infection.

Sometimes it's BIG pills. I don't know why HIV medications tend to be on the huge size, but that's how it is. Some are smaller, but there is almost always going to be a big pill to go with them. Luckily, if you have trouble swallowing pills you aren't the first. There are liquid forms of all the medications. Talk with your doctor about these and decide together if they're necessary. All medications have possible side effects listed. Someone somewhere has taken it previously and gotten sick. Either from the medication or from some other source. When sick people take meds they don't stop being sick immediately.

As for your CD4 and viral load - these numbers change constantly. Medications are used to raise the CD4 and lower the viral load. This can sometimes take time. Months or more than a year to see a marked improvement. Keep track of these numbers. When you follow your doctor's advice you will see a steady increase in the good numbers and decrease in bad numbers.

Each person's body is different. The stories and anecdotes you'll read about other people taking their meds applies to them only. There have been some general guidelines from years of research. But, you should remember - that they are almost always general. Rarely specific.

Stick with your meds. Don't skip doses when you feel good. That's when your body needs the meds to keep the HIV beat down. Go to all your doctor appointments. Especially when you're sick. People try to get out of going to the clinic when they don't feel well. What the hell do they think the doctors are there for? Ask questions. One of the best ways to fight this disease is to know this disease.

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Trav
Member

Reged: 07/24/12
Posts: 34
Loc: CA, USA
Re: My story new
      #276876 - 06/26/14 06:50 PM

iam1, I have been going to all my doctor appointments since February of this year. The rash turned out to be molluscum contagion, the rash rash is now gone and I'm working on healing the scars that were cause by freezing the rash.
I did have a genotype test and I didn't have resistance to anything which is why I was bothered with my first doctor who wouldn't listen to me in regards of a one pill a day regimen. I knew a one pill a day regimen was best for me at that time cause I don't like taking pills.
When I stopped taking the meds it wasn't because I was feeling fine it was because I constantly felt sick and had side effects. I am doing better with fighting this disease on my own terms than the doctors.

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iam1
Fanatic

Reged: 06/17/09
Posts: 165
Loc: Georgia
Re: My story new
      #276879 - 06/26/14 07:30 PM

Glad to hear you're doing better! I was with a friend this morning in the hospital. She's HIV+, but that isn't her problem. These days the virus isn't the problem for most people who are HIV+. She has extremely high blood pressure. Something that may not have been caught if she weren't going to the doctor for her HIV.

You're extremely lucky to have a non-resistant virus. I can't think of anyone who has the same. (Not that I know everyone's test results....)

Remember what I said about liquid forms of medications. The pharmacy companies even give them great flavors. Like Grape, Cherry, and Bubblegum. (Who decided that medication should taste like bubblegum? Who decided swallowing bubblegum is a good thing?)

I'm very glad you found a doctor you can work with. For people with HIV (or any other life threatening condition) that can be extremely important. There HAS to be communication! Not just preaching from one side to the other. I can't count the number of people who I've talked with who haven't liked a particular doctor (HIV doctors and others), because the doctor didn't communicate or listen.

This is your life. It's the only one you're getting. You have to do everything in your power to take control and make it as good as you can!

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Abivic
Newbie

Reged: 06/27/14
Posts: 18
Re: My story new
      #276896 - 06/28/14 03:39 PM

Thanks for sharing your story, It felt good that there are people with whom who can relate, well I have been in my second year since I got diagnosed, well its been a tough time ever since then, as I was lacking support and friends.

Well without actually pointing someone I would rather try to be positive and finding support online, I have been on some support groups and also I have been on www.PozBuddies.com to find support and friends where I get many of my friends and try to learn more of this virus and how to deal with it.

However to be frank I am not socialized and prefer to keep myself down to earth.

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1special1
Newbie

Reged: 04/19/14
Posts: 11
Re: My story new
      #276901 - 06/29/14 03:59 AM

Thank you for sharing your story Trav. I'm glad you found a doctor that works with you. And iam1 I'm glad you're doing better also. Just hang in there and never give up no matter what. Continue on your journey of getting healthier and healthier. Remember you're not alone.

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dbltom1
Newbie

Reged: 06/03/14
Posts: 6
Loc: Kentucky
Re: My story new
      #277389 - 07/29/14 09:10 AM

Thanks for sharing your story. It really helps to hear from others. I have no one to talk to about this, I have a couple of family members and friends who know, but I think its difficult and uncomfortable for them to talk about it with me so we all pretend. Spent most of my life pretending anyway I guess.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1749
Loc: Jersey Shore
Re: My story new
      #277446 - 07/31/14 09:14 AM

To everyone , don't hesitate toPM individuals for added encouragement and support.

--------------------
Look up to the Heavens for the answers to Lifes questions .

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