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Author Topic: "You don't need to start meds yet"  (Read 2528 times)

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Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
"You don't need to start meds yet"
« on: February 07, 2007, 12:26:19 PM »
Hello Everyone

For those who know my story I went to visit the Adherent nurse yesterday so she could go over with me the medication, side-effect and so forth. My ID Doctor told me I would start as soon as she got the geno-type test back which she received on the 25th of January.

Anyway, my latest numbers are 200 CD4 count and VL still in the 20's K.

I was afraid this would happen and the Adherent nurse told me "you now have AIDS". (Breathe in, Breathe out). I cried for a bit but at this point what good does it do to me to cry so I stopped after a 20 seconds. According to Adherent, they have been seeing a pattern of recently infected people getting strains where the CD4 counts decline rapidly and are resistant to several drugs. She siad "no one really knows what is going on". She then looked at the computer and she noticed that my doctor did NOT leave instruction as to what she should talk to me about nor placed the Geno test on the computer. Then she took a look at the schedule and noticed that my ID Doctor did not schedule a follow up appointment which she found disturbing considering I am not doing very well.

Adherent: "Are you happy with your doctor?"

My answer: I don't have anything bad to say about her.

Adherent: " You know you have options right?"

My answer: I guess.

Adherent: " You have to be able to feel comfortable with your doctor and most importantly trust him because you are putting your life in his hands"

So after that, I figured that she was giving me a hint, she couldn't tell me what to do but I certainly got the hint. I do like my doctor, especially the way she talks to me to break me bad news but unfortunately I don't feel a connection. So after an hour talking to the adherent nurse she gave me some pamphlets to read about Kaletra and Reyataz/Norivir and told me that I make the decision not the doctor. I then said " I do?" I told her that the doctor told me I was suppose to get my prescription today considering the decline of numbers and then she looked over her notes and remembered that my doctor left with her my prescription for Kaletra/Truvada. Hmm...... At this point the Adherent girl felt the need to introduce me to a Doctor she likes better. So he came in to answer any of my questions and he told me I had some time to think about what is better for me and understand that it is a HUGE commitment in my life and there is no turning back because Not adhering to meds = Mutation = Resistance and with my resistance issue it is alot more complicated. He spent 10 minutes with me going over many things my first doctor did not and most importantly he made me feel very good. The adherent nurse spoke to the NEW doctor in medical language and simply asked him if he could fit me in his busy schedule. The new doctor said " I am booked until April" but if you look hard enough maybe you can fit one new one. So without much thinking I felt it was the right thing to do and switch doctors. NOT because the Adherent nurse was giving me hints to switch but because I felt an instant connection with the new doctor and he told me I was in control of this disease and I made the decisions. The adherent nurse ran over the floor for about 10 minutes and finally came back and told me she fit me in his busy schedule. I was HAPPY. The Adherent nurse said, be prepared to spend at least an hour to two hours with him each session, because he likes to talk slow and alot, especially about his new house he bought in the Carribbean. lolz. I then rememberd that my first doctor spent 10 minutes talking to me in the first visit which I found quite quick and cold. So my final question to the New doctor was, Since my CD4 counts are at 200 will it make a difference if I start meds 2 weeks later, and he told me it wouldn't be a big difference but when I go and see him in 2 wks I have to have a decision as to what meds I want to start with, that was the condition he told me he would see me.  I am sure I made the right decision to switch doctors what I am a bit scared about is having an AIDS diagnosis would these 2 weeks be significant enough for me to get an OI. I am on bactrim so PCP is not likely. It's scary.

Would you guys have done the same?
« Last Edit: February 07, 2007, 12:30:29 PM by Ihavehope »
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline robvaz123

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  • Posts: 11
Re: "You don't need to start meds yet"
« Reply #1 on: February 07, 2007, 12:33:59 PM »
Good luck.  It will workout.  Just started on Atripla a week ago.  Not sure if it's working yet or not.  Probably will check in a couple of weeks.  My VL isn't as high, but my CD4s are almost where you are.  Adherence is key.  Just stick with it and in a month or so things will be normal.  Seems like someone is looking out for you.  Funny how things fall into place sometimes.

Offline RAB

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  • Joined March 2003
Re: "You don't need to start meds yet"
« Reply #2 on: February 07, 2007, 12:47:44 PM »
Hello Hope

I think you made a very wise decision.  Feeling comfortable with your doctor is crucial.  Sounds to me like the new doctor is someone who fits that bill.

Good luck to you and when you actually start, rest assured there are lots of members here who will answer any concerns you might have.

RAB

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: "You don't need to start meds yet"
« Reply #3 on: February 07, 2007, 01:03:50 PM »
Hey Hope,

I think it sounds like the clinician was giving you hints and being comfortable with your doctor is crucial.

I just switched mine.   She's allegedly one of the best, but it wasn't working out so I will just have to drive the extra 30 minutes, but I know when I left his office I didn't feel hopeless or have more unanswered questions.   They had all my records and the staff is on top of things.  I've a feeling many people have gone back to him now.

Don't be afraid to ask around and see who the best ones are.   I am careful to not burn any bridges with prior doctors and just say this one's closer or whatever.  You don't owe any explanations, but already having followed your posts this sounds like a good step in the right direction and I think you've made a good choice.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: "You don't need to start meds yet"
« Reply #4 on: February 07, 2007, 01:09:34 PM »
I feel comfortable with my decision what I am a bit afraid of is the 2 week wait considering my numbers. For example today I woke up a bit tired and runny nose. It is 20 degrees in NYC right now so I assume it could be the weather getting to be so cold and the lack of sleep but I do notice an energy decline. I hope nothing happends to me int he next two weeks, I am on bactrim so that calms my nerves a little.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline egello

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  • cb
Re: "You don't need to start meds yet"
« Reply #5 on: February 07, 2007, 01:15:54 PM »
hey hope,

i know it must be really really difficult, but you have to be calm. do some yoga or do some cardio. being soooooooo worried about your cd4 count will actually make you sicker. And you konw what? so what if you got sick,,,, you are treatment naive and you will heal and recover nicely as I have. Its no big deal as long as you take care of yourself and eat well.
Just relax and take it as it comes, they got protocols now that will almost guarantee you to not die from this.

Remember, i didn't get my pcp until i was at 11 cd4 count, which before that I was kicking and running around wild!
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline woodshere

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  • ain't no shame in my game
Re: "You don't need to start meds yet"
« Reply #6 on: February 07, 2007, 01:23:17 PM »
If you are comfortable with the new doc, then yes it was the right choice.  
As for the AIDS diagnosis, if all other factors were the same except you had a cd4 count of 201 with no OI's, then it is my understanding according to the CDC you wouldn't have AIDS.  And then once you go below 200, no matter how high your cd4 count goes you will always be classified as having AIDS, even if you are in great shape.  I think the term of having AIDS is misleading, primarily due to the longevity we have due to HAART.  I just read this phrase and much prefer it, enhanced HIV infection or disease.
I feel comfortable with my decision what I am a bit afraid of is the 2 week wait considering my numbers. For example today I woke up a bit tired and runny nose. It is 20 degrees in NYC right now so I assume it could be the weather getting to be so cold and the lack of sleep but I do notice an energy decline. I hope nothing happends to me int he next two weeks, I am on bactrim so that calms my nerves a little.

I remember after my diagnosis, I thought every little ailment was the beginning of the end.  Now a runny nose or sore throat is just that.

Best during the transition,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Robert

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  • Posts: 2,646
Re: "You don't need to start meds yet"
« Reply #7 on: February 07, 2007, 01:28:57 PM »
As long as you take care of yourself you'll be OK.  Stay warm.  Wear plenty of layers.  Get plenty of rest.  You know, the usual stuff you do to keep from getting sick.  Of course the Bactrim also helps.

Before your next appointment with the new DR. you should go to the TREATMENT QUESTIONS forum to learn more about other HAART alternatives.  I take Reyataz, Norvir and Truvada.

Sustiva and Atripla or Truvada seems to be real popular.

My general impression is that Kaletra is more liable to cause cholesterol/triglyceride problems than the other meds.

robert
« Last Edit: February 07, 2007, 01:31:05 PM by Robert »
..........

Offline Boo Radley

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  • Not a "real man" and damn proud, mithter... FAB
    • Animal Rescue New Orleans
Re: "You don't need to start meds yet"
« Reply #8 on: February 07, 2007, 01:43:51 PM »
Ihavehope,

You made the right decision to switch doctors.  Even if the one you left is a great HIV doctor her methods indicate she's got too large a caseload or some other factor which caused her to make the mistakes she did. 

Your AIDS diagnosis is like mine, I think -- once your CD4 count goes to 200 or below clinically you have AIDS.  The addition of the CD4 count as an AIDS indicator was made several years ago, with some controversy, but I believe it was a valid decision.  The CD4 count has proved to be a pretty good indicator of probable disease progression and is used as a marker for initiating HAART.  Most AIDS-defining illnesses (but not all) are likely to occur in people with a CD4 count below 200, often well below 200.   Although many people have started HAART with significantly lower CD4s those people are often the ones who learn of their HIV status when hit by an opportunistic infection.  If you can it's best to start HAART before OIs occur since an OI means your immune system is already damaged, and it's also no fun having to take HAART meds along with treatments to stop or prevent OIs. 

I hope your new, and very busy, doctor turns out to be as good as he sounds so far.  Good luck!

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write 2007 Sweet Old Boo, Inc.

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: "You don't need to start meds yet"
« Reply #9 on: February 07, 2007, 01:50:17 PM »
So being 200, that means I have AIDS even if my numbers go up?
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline woodshere

  • Member
  • Posts: 1,477
  • ain't no shame in my game
Re: "You don't need to start meds yet"
« Reply #10 on: February 07, 2007, 02:08:21 PM »
From what I have been told yes, you still are diagnosed as having AIDS.  One reason that was explained to me is that someone who is receiving government benefits due to being eligible under the ADA act does not want to lose their benefits when their CD4 count rises to say 350.  If they lost the benefits then they wouldn't be able to pay for the meds and then that will cause more problems.  If I were you I would concentrate on choosing your meds and not stress about a clinical definition.

Woods

edited:  When I tested positive my CD4 count was 179.  I could handle being HIV+ but saying I had AIDS really bothered me.  But now my CD4 count is almost 300, I have yet to have an OI and really am in better physical shape than I have been in a long time so it really makes no difference to me if I am HIV+ or have an AIDS diagnosis.
« Last Edit: February 07, 2007, 02:15:21 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Boo Radley

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  • Not a "real man" and damn proud, mithter... FAB
    • Animal Rescue New Orleans
Re: "You don't need to start meds yet"
« Reply #11 on: February 07, 2007, 02:12:09 PM »
So being 200, that means I have AIDS even if my numbers go up?

Yes, but it's just a more precise definition for the HIV disease you already have.  Don't worry or fret about it. 

Technically I've had AIDS since October, 2004 but I've never had an OI or any other indicator of AIDS (although some forum members have been so course as to opine that my rambling, incoherent posts are a clear sign of dementia).

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write 2007 Sweet Old Boo, Inc.

Offline woodshere

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  • ain't no shame in my game
Re: "You don't need to start meds yet"
« Reply #12 on: February 07, 2007, 02:16:37 PM »
(although some forum members have been so course as to opine that my rambling, incoherent posts are a clear sign of dementia).

Surely you jest! :)
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Queen Tokelove

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  • Smokey the Smurf
Re: "You don't need to start meds yet"
« Reply #13 on: February 07, 2007, 02:56:57 PM »
Ihave~~

Ok, what is the deal with that avatar pic, perky boobies, makes me want to smack them to see if they jiggle like jello.. ;D....I think you made the right decision to switch doctors. It seemed like the nurse knew what she was doing..If a doctor can only spend 10 minutes with you, it doesn't seem like they are too concerned or they consider you just a number/statistic.

I agree with the others, you need to take care of yourself. The runny nose could just be the weather, so take care of yourself accordingly. I know hearing that you are now considered to have aids had to be a shocker but it is not the end as those who are in that classification have told you. When you start taking the meds, I'm sure things will get better. The new doctor sounds on point to me. Try not to worry. PM me if you feel like talking, sweetie.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline hussy_24

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  • Posts: 48
Re: "You don't need to start meds yet"
« Reply #14 on: February 07, 2007, 03:17:33 PM »
same kinda thing happened with me, doctor seemed like she knew her stuff but only saw her briefly, the nurse on the other hand kept trying to contradict the doctor's approach. further, the nurse also "felt the need to introduce me to a Doctor she likes better".

i didnt really probe the situation but i wondered why the nurses would "poach" people from one doctor and give them to another, i mean they are all working together really

Offline Jeffreyj

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  • Posts: 1,403
Re: "You don't need to start meds yet"
« Reply #15 on: February 07, 2007, 03:57:12 PM »
I'd like to echo what RAB, Woody and Wesley said about you making a great decision about getting a new DR.  You may have set a wolds record for firing a DR ...LoL.....But it is so important to have a DR you like and feel good about.

Going below 200 was an easy way to define AIDS back in the 80's and early 90's. It was the benchmark for disability and the like. I wouldn't put too much stock in it...No need to worry about that.

You are managing things very, very well for someone just diagnosed. You should be proud of your self!

Keep up the good work.
Positive since 1985

 


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