Start Meds?

[schumann106]

okay, here's the "short" low down.

for the past year my cd4 count as been fluxuating between 220 - 350.  my viral load between 25,000 - 50,000.  a couple of days ago my results went CRAZY:  cd4 - 203 &
vr - 128,000.  even more absurd, i feel absolutely fine.  no fatigue, no colds, nothing.  even put on 5 lbs. the doctor, of course, as all american doctors, wants me to start meds.  i, being a person who is more toward the holistic approach, want to wait.  why have i not had even a cold? or fever?  why does my skin not reflect illness, ie pale, unhealthy?

my goal is to be as long as i can without meds.  i am only 35 and anticipate having to take them for 20 some odd years going forward.  any advice?  anyone with a similiar experience?

confused.

[milker]

Your results didn't go "crazy". Your CD4s are slowly going down and your VL is between a log range of 4.3 and 5.1, so it's slightly going up. You may not want to go to meds yet and that is your decision, but what I would suggest though is that you start thinking about taking prophylaxis for PCP (e.g. Bactrim/Septra etc.). You may feel great today, it doesn't mean that your body will be ready to fight a pulmonary infection, and this is no joke.

Milker.

[schumann106]

thanks so much.  i had just read about prophylaxis earlier (my doctor did not tell me).  first thing to buy after work...

[Miss Philicia]

thanks so much.  i had just read about prophylaxis earlier (my doctor did not tell me).  first thing to buy after work...

Uh, I don't think you can just waltz into Duane Reade and buy this.

[milker]

thanks so much.  i had just read about prophylaxis earlier (my doctor did not tell me).  first thing to buy after work...

erm yes.. that's not something to take without medical advice from your doctor, and it's on prescription. I didn't tell you to take it, I told you to start thinking about it and discuss it with your doctor.

Milker.

[schumann106]

sorry...was trying to be funny...thought the topic needed some humor...

[pozattitude]

There are different approaches to the meds...
some say wait until you have no other choice while others say start meds once your CD4 drops to 200 or less.
Personally I wanted to go on meds and keep my immune system healthy instead of waiting and having the chance to let my immune system go to shit and have to build it back up.
When I first went on meds my VL was in the 100's of millions copies and my CD4 was around 200...yet I didn't feel sick at all, never had been sick.   That was 10yrs ago and I still have not had any opportunistic infections or any thing at all that is related to HIV infection.... again this is my option to go and stay on meds, but I am glad since I am very healthy and have not have any health issues that are related to HIV infection.
I did have all shots I could to prevent things such as Hep A and B, pneumonia, etc....
Talk to your doctor again and find your CD4 ratio....anything below a 15% indicates you should be on meds...at least that is what I've been told.

good luck with whatever decision you make

Rich

[newt]

why have i not had even a cold? or fever?

Well, you need a decent immune system to get a reaction. It is possible to have eg an infection and notice nowt (like, er me and hepatitis B)

my goal is to be as long as i can without meds

Personally speaking, wrong goal.  My goal is to live a long, healthy life and accomplish the things I am here to do in this world, ideally avoid HIV-related palliative care interventions and pain killers, IV antibiotics etc etc for opportunistic infections (a) because these treatments are more horrid than combo, and (b) it wastes time.

It is possible to leave it too long. I can see why your doc is talking about meds cos 200 is the limit for when nasty opportunistic infections have a greater risk of affecting you, eg PCP. 

This is not say you will get ill. My ex didn;t get at all ill when his CD4 fell to under 150 << for a long time before he chose the meds route. 

And my friend Drew didn't get ill til his CD4 was 9.  But he ended up immobile in my bed with a boil the size of an orange on his arm and PCP << carted off in an ambulance.  However, he decided to do combo in his hospital bed, drip n all, and is now running a landscape gardening business in Australia.

I was very impressed the hospital doc did not insist, left it up to him, was prepared to treat him symptomatically, for his PCP etc.  But I know Drew now wishes he'd done meds earlier, even though it would have been a big step over his naturopathic philosophy.  He decided, in the end, ARVs, they're a tool for the body, and he had things to do.

At a CD4 count around 200 your doctor is being conservative in his recommendation to think about combo.

However, it is important to be prepared (I do not say ready, I am not sure you can be ready to swallow the first lot of tabs) and you are right, it is a long term commitment. But, the most difficult thing I find these days is remembering to take the tabs each lunchtime.

- matt

Edited 4 times for spelling, it's been a looooong day

[milker]

sorry...was trying to be funny...thought the topic needed some humor...

ha ok.. didn't seem hilarious to start with, but ha ha ha

Milker.

[blondbeauty]

I started meds with a cd4 count of 25%=503. I am glad I did. It has been very easy for me. Many people take meds for high blood preassure or other conditions all their lives and live happily. You will be healthy and the labs that make your meds will be happy as well. 

[allopathicholistic]

I started meds with a cd4 count of 25%=503.

Hey schumann106: I think for me it would have been better if I had done what blond did above. I waited for a long time after my infection to start meds (see signature) and now I wish I did things differently. Of course I can't change the past. If you haven't read up on http://www.aidsmeds.com/articles/TreatmentQuestions_5032.shtml, please do so. I think you'll find it helpful. At some point the site will bring you to this chart http://www.aidsmeds.com/articles/WhenToStart_4758.shtml but please dont skip ahead i.e. read from the beginning (starting link in blue) to arm yourself with as much knowledge as possible.

About holistic stuff, I hope you don't have high expectations that holistic things can replace proper FDA-approved meds to combat HIV viral replication. As my 2nd doctor (the holistic one) told me, that's absolutely impossible and anyone who disagrees is deluding himself/herself. He goes on to say holistic things are fine for pozzies who are already on meds and should be used just to treat side effects. He has some pozzies in his private practice and he only treats them for side effects, not to lower VL or raise CD4 (impossible with holistic methods) ...... Let us know what your thoughts are. ~ Allopathicholistic

[aztecan]

okay, here's the "short" low down.

for the past year my cd4 count as been fluctuating between 220 - 350.  my viral load between 25,000 - 50,000.  a couple of days ago my results went CRAZY:  cd4 - 203 &
vr - 128,000.  even more absurd, i feel absolutely fine.  no fatigue, no colds, nothing.  even put on 5 lbs. the doctor, of course, as all American doctors, wants me to start meds.  i, being a person who is more toward the holistic approach, want to wait.  why have i not had even a cold? or fever?  why does my skin not reflect illness, i.e. pale, unhealthy?

my goal is to be as long as i can without meds.  i am only 35 and anticipate having to take them for 20 some odd years going forward.  any advice?  anyone with a similar experience?

confused.

Well, I felt absolutely fine when I started meds too. I didn't look sick, weak, or pale, and I didn't have the sniffles, pneumonia or any other maladies.

I started when my CD4s were in the 400s (440, I think).

My goal was never to stay off meds as long as I could. My goal was to try to avoid getting terribly ill, as all my friends had done.

I have been positive for 22 years and on meds for more than 11 of those years. I don't regret starting in 1996 when my numbers started to go south.

I would have gargled Drano had my doc told me it might help. (Come to think of it, I am on AZT, so it is sorta like gargling Drano!    )

I think Newt explained my thoughts on this best.

"My goal is to live a long, healthy life and accomplish the things I am here to do in this world, ideally avoid HIV-related palliative care interventions and pain killers, IV antibiotics etc etc for opportunistic infections (a) because these treatments are more horrid than combo, and (b) it wastes time."

Frankly, Schumann, if my numbers were in the same range as yours, I would already be on meds.

But it is a personal decision and one that should not be made lightly.

Good luck.

HUGS,

Mark

[schumann106]

first of all, thanks so much to everyone who responded.  i greatly appreciate it and, it is wonderful insight.  you all support the data and the doctors, etc.  i have read, and read, and read...studies from medline, all the "whens", "whys" on aidsmeds, the body.  there really is no variance in opinion that i should start meds.  of course, there is NO explanation for why i feel perfectly healthy, no illness, no fatigue.  i suppose what bothers me most of all is, doctors are not even willing to have a discussion or TRY to help me rationalize through.  obviously i am someone who researches and asks questions and needs answers.  the word of a doctor is not enough. 

possibly i'm in denial about being HIV+ and therefore, staying off the meds allows me some sort of consolation in that regard.  i don't think that is the case but, there is that possibility.  certainly, i do not want to take the easy way for anything.  including this as, that is a principle i live my life by.  not to make things intentionally more difficult but, the old cliche that "nothing good or worh while is easy", is true.  yes, its nice to live loooonng, and do as much as possible.  and my instinct tells me i will.  it hasn't failed thus far...

as for the holistic approach, i never was under the impression that it was a "substitute" for meds.  however, one can strengthen their body naturally and also, build their white blood cells through food and supplements.  another cliche, "we are what we eat".  yes, this nasty thing is invading my body and tearing it down and yes, the meds help confuse it...this is what i have to rationalize through for my own self.

another note, i do not have much trust in doctors nor, pharmaceutical companies.  they are influenced my money and profit which plays a very large factor into what treatment and advice where are privy to.  i believe, in general, they are lazy and rarely are interested in the root of any medical issue.  only the treatment of symptoms and illness.  this has been my experience LONG before the hiv.

my apologies for rambling but, so you wouldn't think i was totally NUTS, i wanted to show my thought process.  i am an artist.  we live on instinct and risks...  (maybe you think i'm MORE nuts know)

kind thoughts.
mks