Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
April 18, 2014, 09:15:29 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 620165
  • Total Topics: 46724
  • Online Today: 216
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Taking charge of your own health  (Read 3188 times)

0 Members and 1 Guest are viewing this topic.

Offline allanq

  • Member
  • Posts: 687
  • still life with pills
Taking charge of your own health
« on: July 15, 2006, 01:02:41 PM »
I have a friend who has been positive for 18 years. He's an intelligent and successful person, but if you asked him what meds he's taking, he couldn't tell you. He said he just does what his doctor tells him.

About six years ago, I told him that the lipodystrophy that he was starting to experience could be caused, or at least exacerbated, by the d4T (Zerit) he had been taking for so long. He told me that he was afraid to make any changes to a regimen that seemed to be controlling the virus (even though his arms and legs were getting very thin and his neck and buffalo hump were growing). He told me that his doctor, an HIV specialist, hadn't brought up the possibility of changing his meds.

A year or so ago, his buffalo hump got so bad that he required surgery to correct it. The surgery was successful in removing most of the hump. (He still has an oversized neck.) His doctor finally took him off the d4T and substituted Sustiva, which he has been doing well on.

Clearly, his doctor must have noticed that his hump was getting bigger, his neck was getting too big for his shirts, and his arms and legs were turning into toothpicks. I can't for the life of me understand why the doctor kept him on d4T so long, despite all the research indicating its association with lipodystrophy.

I also can't understand why my friend put all his faith in his doctor and refused to even talk to him about getting on a less toxic regimen.

Dealing with HIV is painful, and there is a temptation to just turn over one's health care decisions to a doctor. The reason I'm telling this story is to tell people how important it is to do your own research and question your doctor.

If a new drug has been approved, ask your doctor about its implications for your treatment. This happened to me recently when I heard of an opportunity to get into an expanded access program for TMC114 (now called Previzta). I had been on Tipranavir (Aptivus), but I knew that Previzta required just half the dose of Norvir that Tipranavir did. After some discussion, my doctor agreed that it would be a good idea to switch to Previzta. I have noticed that halving the dose of Norvir has definitely reduced the diarrhea that I had been experiencing. My decision to switch to Prezista was reinforced when reports came out about Tipranavir causing inter-cranial bleeding. If I had not brought up this change, my doctor would have just kept me on Tipranavir.

So the message I'm offering is this: take an active role in your own health care. Don't accept side effects as being inevitable. Sometimes a simple change in your meds can help solve the problem. If your doctor doesn't take well to being questioned, get a new doctor. If you're not comfortable with a decision your doctor has made, get a second opinion. It's your life, and don't turn over responsibility for it to another person, even if they are a doctor.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Taking charge of your own health
« Reply #1 on: July 15, 2006, 01:59:22 PM »
So the message I'm offering is this: take an active role in your own health care. Don't accept side effects as being inevitable. Sometimes a simple change in your meds can help solve the problem. If your doctor doesn't take well to being questioned, get a new doctor. If you're not comfortable with a decision your doctor has made, get a second opinion.

Great reminder Allan! I 'm hapy for you about the Previzta! I would toss in this reminder: Nowhere is it written in stone that a person MUST have ONE doctor and only ONE doctor. For example I have an infectious disease doctor for HIV (he's my allopathic doctor) and a holistic doctor for any side effects HAART might give me. For me, this is a recipe for success!!! Allopathic. Holistic. !!  :D

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: Taking charge of your own health
« Reply #2 on: July 15, 2006, 07:55:27 PM »
Dear Allan,

Since I left Los Angeles in July 2000, I spent 4 years in a small community in Northern California with no real medical care for HIV.  There was an FNP who was actually quite good but he served 3 clinics in 2 counties and an MD signed off on the medical charts without ever seeing most patients (in 3 years).  Because of this lack of care, I have learned it is up to me to be informed of medications and treatment.

For the last year and a half, I have the best doctor in the State of California.  I still question everything because proper care is my responsibility.  Have the best day
Michael

www.Commission-on-AIDS.org

 

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: Taking charge of your own health
« Reply #3 on: July 15, 2006, 08:05:30 PM »
A lesson I learned the hard way...Thanks Allan for reminding us of a very important factor in our survival.
David always had a saying about doctors...they're practicioners of medicine....they're still practicing and on us.
Big Hug Buddy :P
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Taking charge of your own health
« Reply #4 on: July 17, 2006, 10:30:46 AM »
David always had a saying about doctors...they're practicioners of medicine....they're still practicing and on us.

LOL!   :D  :D  TRUE! (and sad/twisted)


Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Taking charge of your own health
« Reply #5 on: July 26, 2006, 04:30:25 AM »
Thanks allopathicholistic for bringing me to this post, It is an important one. If anyone is unhappy with their DR FIRE their ass. That's what makes this site so awesome! KNOWLEGDE=POWER...We all need to be our own best heathcare provider.
I think we all forget that Dr's are human, and there are good ones and bad ones.Thank you Allan for this very important reminder. No one should ever settle for less then the best. sometimes that takes persistence, but it's well worth it in the long run. I'm sorry it took so long for your friend to realize this. What the hell was his DR thinking.?? Now that's one bad DR. Nice post Allan, thanks.
Positive since 1985

Online GSOgymrat

  • Member
  • Posts: 4,958
  • HIV+ since 1993. INTJ
Re: Taking charge of your own health
« Reply #6 on: July 26, 2006, 05:06:19 AM »
I completely agree. That's why I'm on here is to keep up to speed on what is going on with HIV treatment. Whenever my doctor prescribes anything new I check it out on AIDSmeds or other sites before I take it. I've call my doctor back, pointed out drug interactions or other problems and he works with me. I actually went to him and told him I wanted to switch my meds to try to reduce my triglycerides. I told him what meds I wanted to be on and printed out articles in case he had questions.

My partner, on the other hand, couldn't be bothered. He takes whatever his doctor recommends without question. I know in his case he takes his meds regularly but he doesn't want to think about it.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Taking charge of your own health
« Reply #7 on: July 26, 2006, 06:43:19 AM »
I like my doctor, he has used AIDSmeds.com since it started.  I have also been here for 22 years because I was not like Allan's friend.  He tells one very important story above, and each one of you who is new to this disease can learn a bundle from this story.

In Love.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline alisenjafi

  • Member
  • Posts: 811
  • They say HIV comes from monkeys!
Re: Taking charge of your own health
« Reply #8 on: July 26, 2006, 10:42:57 AM »
I have been luckier than most as I never had an oi, or anything else worse than foot warts and swollen glands. I have been trying to tweak my diet to keep it that way. My lowest count  for t cells since on meds was 446-, last Jan when I had a sinus infection. The next results went to 831- my highest in April. Since getting  on meds in may 2003 I have been undetectable.

My question is this, for those who have other related problems, cold sore , shingles etc., what if anything  do you take diet or supplemental-wise?  I also have finally begun  dialogues with  nutritionists, and  doing my own research.

I wonder since starting bee pollen which is said to prevent many of the problems people post here, I wonder how true it is. I have to say since adding the bee pollen to a better diet, I feel like I did  way before I got the bug! Not say the other things I take aren't helping. I been taking omega 3 capsules and find my skin looks better. As well as yogurt with no corn syrup ( avoid corn syrup at all costs), and wheat germ.
Cheers
John- health goes beyond the medicine cabinet!
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline red_Dragon888

  • Member
  • Posts: 2,803
  • Love and Be Love in Return
Re: Taking charge of your own health
« Reply #9 on: November 25, 2006, 05:20:06 PM »
i read the proactive link and I was very please.  one must take an active part in their health and not just let the doctor led them by the nose.  That is what i do.  i ask questions, i research medication, i want the doctor to know this is a partnership and i am the one who is in charge.  he is of course a highly trained advisor which his opinions are very valuable to me. 
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline AlanBama

  • Member
  • Posts: 3,578
  • 'class' of '87
Re: Taking charge of your own health
« Reply #10 on: November 25, 2006, 05:59:56 PM »
Good point made, Allan, and a valuable lesson to many.    I have a friend who is much like the one you speak of, who has been on drugs for almost as many years as I have, yet has no idea of the names of them or what they are for.   He just blindly accepts whatever his doctor says....right or wrong.

In this day and age, you have to be proactive, ESPECIALLY if you go into the hospital.   They can kill you if you're not careful, and keep a close eye on what they are doing to you.   It almost happened to me in 1999.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Eldon

  • Member
  • Posts: 2,664
Re: Taking charge of your own health
« Reply #11 on: November 25, 2006, 06:07:31 PM »
Hey Allan,

Thank you for bringing this point up for discussion. It is our responsibility to take action with our own health. There are a number of choices that are available to us in this life.



Make the BEST of each Day!

Offline sdcabincrew74

  • Member
  • Posts: 540
    • My Manhunt account
Re: Taking charge of your own health
« Reply #12 on: November 26, 2006, 06:43:02 PM »
Good point made.  When my triglycerides shot up on Kaletra my doc wanted to give me another pill to lower them.  Upon researching, I discovered that Reyetaz may allow me to not have to take another pill.  Low and behold my doc agreed to the switch and a year later my tri's are completely normal.  Power to the people!
The difference between an overnight and a layover is luck!

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: Taking charge of your own health
« Reply #13 on: November 26, 2006, 07:00:10 PM »
Good thread!  I have already posted that I, too, have gone from doctor to doctor when needed, because I would have to do this, take that or whatever it was.  I will add to this discussion, however, that this can become a problem with a friend or even partner.  WE may 'understand' that you 'have' to be agressive, ask questions, become involved, become a partner, etc., etc.  But I have had more than one friend who chose to simply show up as required, nod his head and leave.  No clue.  No questioning.  No urge to research things.  And to stay a friend, we need, I think, to allow someone to handle things as he or she does until such a time that he or she 'gets' what we knew the whole time.  It can be a test of a friendship or even a condition of how the friendship stays a friendship.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.