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New Regimen of Meds, and My Comments on My Speech on the Doctor/Patient Relationship

My Speech Took Place at the 6th Int'l Conference of Adherence and Prevention of HIV/AIDS

May 27, 2011

The big part your doctor plays in your life! It's like a marriage ... if there is no communication or respect, there will be a divorce! Or a person being less adherent to their HIV medications. I tried to tell them how we feel as patients! We have to be proactive with our illness. Ask for tests, even if your doc does not ask for it! Like vitamin D! I was vitamin D deficient and I didn't know ... and if I would have never asked, I would not have known! We have to respect our doctors and they should encourage their patients to research and investigate.

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I am the one who decided to stop taking Trizivir, which has AZT in it, and switch to Atripla! I have two HIV doctors; one told me, "This will be the worst mistake in your life, Maria, you are undetectable!" But I know after so much AZT, it was going to enlarge my red blood cells. So, I made the choice to change and I hope everything goes well! On the other hand, when I went to my primary physician, who is also a wonderful HIV specialist, he told me, before I even asked him, "Maria, here is the result of your blood work. You are undetectable (as I already knew), but the little problems I see here like the enlarged red blood cells etc., etc., are because of the AZT." Of course, I already knew this and actually was informed of this situation by two dear friends of mine on Facebook who have so much experience, Jim and Colin!!! TY both! So, he put me on Atripla right away!

I was so excited to go and speak in this panel and talk to people in the medical field from all over the world! And I found it right on time! Because I had one doctor that didn't want to listen to me ... maybe because he is scared for me? I don't know ... it's not just about being undetectable and my T-cell count! I want to live a long life!! And be on medication that is less toxic! It's my right! He couldn't understand! He talked about if it isn't broken, don't fix it!!!! Well NO!!! I am not going to wait to be broken to fix! Even a car needs a tune up! They have studied and I admire them for that. But we are the people who are living this illness! It's our bodies.

So please everyone, Don't be scared to ask questions, and if you feel your doctor, case manager etc., etc., is not the right partner for you, because it is a marriage (as I say on my video), divorce him/her!



As always love and light.

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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
 
See Also
HIV Medications: When to Start and What to Take -- A Guide From TheBody.com
More Viewpoints and Personal Accounts on Choosing and Working With HIV Specialists
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Reader Comments:

Comment by: Joost Brxntxs (Rotterdam) Sun., Jul. 3, 2011 at 7:57 am EDT
Well done, as a patient is trust in your hivmedication important, AZT-Retrovir is the oldest and needed in the beginning to prevent aidsdemention now there are so many combinations possible. I didnot want norvir anymore and asked for integraseblocker, feel better then since a long time.
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Comment by: Robert (Memphis, TN) Thu., Jun. 30, 2011 at 12:18 pm EDT
I had one of those TC, and have no idea why I stayed with him for 5 years! When my partner of 18 years died and he came in the room and didn't say a word about it, I finally got off my butt and found someone new. The new doc is great so far and appreciates that I am very proactive.
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Replies to this comment:
Comment by: TC (North jersey) Mon., Jul. 4, 2011 at 7:19 am EDT
I am sorry sorry to hear of the passing of your partner Robert. Yes it is very important that you as a patient remain proactive and am happy that you found a physician that takes into consideration the entire spectrum of patient care including compassion, psychological/emotional care and the devastating impact of med side effects....not just VL and CD4 numbers.

Best to you.......


Comment by: Michael (Kauai, Hawaii) Thu., Jun. 23, 2011 at 2:17 pm EDT
I have the most wonderful physician taking care of me that anyone could ever ask for. He is thorough, researches, always willing to spend time and talk and looks at every aspect of my health. I am really blest and believe that I am as well as I am mostly because of him...thnx
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Comment by: TC (North Jersey) Thu., Jun. 23, 2011 at 1:30 pm EDT
Great article Maria. My current doctor has no concern other than my viral load and CD4 count which is currently undetectable and 456 respectively. She currently has me on a cocktail that has been causing pain in my feet, fatigue, and impotence for approximately 1.5 years. She never addressed these side effects and was only interested in viral load and CD4 count. Like you said, if the drugs are successful in controlling the virus, don't fix it.
After doing research, it turns out that my doctor has me on a cocktail that includes Didanosine, a drug that is highly toxic and used very little by medical professionals. I demanded to be taken off of it. That was five weeks ago. I still haven't heard from my doctors office due to the time it takes to do genotype testing and her being on "vacation." Horrendous care! It goes without saying that I will be switching doctors once a new cocktail is prescribed. Yes....be proactive.....many doctors don't care if you have a third arm growing out of your forehead....as long as the viral load and the CD4's are OK.
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Time to Show My Face and Take the Stigma Away


Maria T. Mejia

Maria T. Mejia

I am a 37-year-old Colombian female who lives in Miami, Florida. I've been positive for 20 years. Although almost all my life I've been in long-term relationships with HIV-negative men, I am happily married to a woman who is wonderful and caring. We have been together almost three years and she is HIV negative. I have no children but we will look into having! I am an activist, a peer educator, a caregiver. I volunteered for the Red Cross in education for the Hispanic HIV community and also the American community. I was a pre- and post-test counselor. I have spoken in many conferences and done a lot of outreach in the community, especially in the schools for prevention and education. It is part of my everyday life to educate everyone I can on this subject. Being HIV positive is nothing to be ashamed about! We are strong women, and we will take away all the stigmas slowly but we have to open up.

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