35-year-old undetectable

[blackwingbear]

Heya,all...

My name's Darren. I'm 35-years-old (5'10" and 185lbs.) and live in Rome, Georgia but I am originally from Indiana. Been poz for about 5 years and I am on Atripla and I am undetectable for almost a year (works for me, luckily). I was first diagnosed when I lived in Atlanta. I'm new around here.

I'm still attempting to sift through all of the disinformation, rhetoric and propaganda to get to the truth about HIV/AIDS, not just the "politically-correct" assumptions and beliefs. When I was first diagnosed, I believed all the information I was spoon-fed about it. After awhile I starting discovering I had questions which were considered taboo or that I was considered a trouble-maker for asking. I honestly do not understand why there are certain answers I am not allowed to have about my own health or why it is so difficult to find someone who can supply them.

[Assurbanipal]

Hi Darren

Thanks for telling us a little more about yourself

... and a belated welcome to the Forums.

Assurbanipal

[leatherman]

Hey Darren, welcome to the forums.

Glad to hear the Atripla has been working so well for you. Staying undetectable is the key, you know

I sure hope you can find the "truth" to HIV that you're looking for. There are plenty of people here who have been on many meds, had many illnesses, and have been HIV poz or had AIDS a long time, so I would imagine that whatever answers you're still looking for could be found around here.

I've already seen the truth of HIV/AIDS when, untreated, it killed a partner in 1994, and another partner in 2008, and nearly killed me twice in 97 and 99. If took me 12 yrs to reach undetectable, and I just recently started my 15th HIV med. To me, HIV is just another disease - but it's the one that I've got and have had to deal with for nearly 20 yrs.

best wishes!
mikie aka leatherman aka the ComputerTutor

[Etay1207]

Hey Blackwingbear, you hit it right on the nose.  The HIV/AIDS theory is much like religion.  Don't dare question it, even if somethings don't make sense.  Asking a medical professional thought provoking questions about HIV is like asking a preacher why God doesn't heal amputees.  It's just something you don't do and people like us who have legitimate questions are seen as denialists and sinners. I have millions of questions, but am afraid to ask because of the way I've been threated so far on these forumns. 

[next2u]

hi blackwing,

welcome and thanks for posting about yourself. ask your questions...test the waters...and see if you get what you need. denialists are one thing but if you are on meds then your head understands they work. i am curious to know what you're thinking about. there is a wealth of knowledge here and you may get more than you expect. when the time is right post.

also, enjoy your weekend!

best,
d

[Joe K]

Hey Blackwingbear, you hit it right on the nose.  The HIV/AIDS theory is much like religion.  Don't dare question it, even if somethings don't make sense.  Asking a medical professional thought provoking questions about HIV is like asking a preacher why God doesn't heal amputees.  It's just something you don't do and people like us who have legitimate questions are seen as denialists and sinners. I have millions of questions, but am afraid to ask because of the way I've been threated so far on these forumns.  

If you have legitimate questions, no matter how controversial, ask away and we will do the best to answer them. I realize that you have received some heated reactions, to some of your posts, but I suggest that you are part of the problem for that reception. When you refer to HIV/AIDS theory as being akin to religion, you are insulting an entire branch of science/medicine, regarding a real disease, that if left untreated, will surely kill you. There is no theory that HIV exists, we know it exists and what is left is research and discussion on how best to treat and cure it.

If you want to be heard, on a level playing field, you might want to save the histrionics and ask a question. For you to come into an HIV forum, populated by folks who have lost hundreds to "HIV/AIDS theory" and proclaim us to be a cult, because we somehow have diminished your voice is insulting, plain and simple. No one has prevented you from asking the questions you have, so start your own thread and ask your questions already.

edited to add: Sorry to the OP for the hijack

[Joe K]

Hello Darren,

I would be interested to hear what questions you have about HIV. These forums have always supported the honest and open discussion, of virtually any topic, with very few exceptions. If you have a question, then please ask it and we can go from there. I have been poz for 26 years and I know the reality of HIV, as do our members. I can accept the fact that some things, may appear contradictory and how civilized discussion can help to further our understanding. I invite you to simply ask your questions, don't assume anything and let's see where it takes us.

[mecch]

Hi welcome, and curiousity gets the best of us - please spill - what are the politically incorrect questions?

[tednlou2]

I haven't read your previous posts/threads, so I don't know much about you...maybe I need to figure out how to look up people's posts.

If you're on meds, you obviously think HIV is real?  So, I guess you are talking about asking questions about treatment where people have many different opinions?  I know I've asked questions of some docs about treatment and have gotten shut down with them saying, "Why don't you just start treatment?"  That is aggravating.  Is that the kind of thing you're talking about?  Again, I guess I need to learn how to go back and read previous posts to see where you're coming from.

As long as someone isn't pushing a denialist theory, then we should welcome all questions.  I think most do on here.  I say that because I had this one guy sending me personal messages how I needed to be on meds.  Why wasn't I on meds yet?  Are you on meds yet?  He wouldn't tolerate any other opinion about when to start meds.  I believe he was coming from a caring place, but shooting me down when I answered him about why I'm not on meds got to be annoying.

So, I'd like to hear more from you.  Are these the kinds of things you're talking about? 

[Miss Philicia]

I haven't read your previous posts/threads, so I don't know much about you...maybe I need to figure out how to look up people's posts.

As an example, you click on the user name of any post: click on "tednlou2" and you arrive here.  Using your mouse's scroll wheel go to the bottom of the page and click on "Show the last posts of this person"

[Jeff G]

Welcome Darren .

[blackwingbear]

If you have legitimate questions, no matter how controversial, ask away and we will do the best to answer them. I realize that you have received some heated reactions, to some of your posts, but I suggest that you are part of the problem for that reception. When you refer to HIV/AIDS theory as being akin to religion, you are insulting an entire branch of science/medicine, regarding a real disease, that if left untreated, will surely kill you. There is no theory that HIV exists, we know it exists and what is left is research and discussion on how best to treat and cure it.

If you want to be heard, on a level playing field, you might want to save the histrionics and ask a question. For you to come into an HIV forum, populated by folks who have lost hundreds to "HIV/AIDS theory" and proclaim us to be a cult, because we somehow have diminished your voice is insulting, plain and simple. No one has prevented you from asking the questions you have, so start your own thread and ask your questions already.

edited to add: Sorry to the OP for the hijack

Please retract your claws. This was merely my introduction, as advised to do.

[blackwingbear]

As an example, you click on the user name of any post: click on "tednlou2" and you arrive here.  Using your mouse's scroll wheel go to the bottom of the page and click on "Show the last posts of this person"

Who are Ted & Lou? Ah. I see now - to previous poster...

[blackwingbear]

Hi Darren

Thanks for telling us a little more about yourself

... and a belated welcome to the Forums.

Assurbanipal

Thanks!!

[blackwingbear]

Hey Darren, welcome to the forums.

Glad to hear the Atripla has been working so well for you. Staying undetectable is the key, you know

I sure hope you can find the "truth" to HIV that you're looking for. There are plenty of people here who have been on many meds, had many illnesses, and have been HIV poz or had AIDS a long time, so I would imagine that whatever answers you're still looking for could be found around here.

I've already seen the truth of HIV/AIDS when, untreated, it killed a partner in 1994, and another partner in 2008, and nearly killed me twice in 97 and 99. If took me 12 yrs to reach undetectable, and I just recently started my 15th HIV med. To me, HIV is just another disease - but it's the one that I've got and have had to deal with for nearly 20 yrs.

best wishes!
mikie aka leatherman aka the ComputerTutor

Thank you!!!

[blackwingbear]

Hey Blackwingbear, you hit it right on the nose.  The HIV/AIDS theory is much like religion.  Don't dare question it, even if somethings don't make sense.  Asking a medical professional thought provoking questions about HIV is like asking a preacher why God doesn't heal amputees.  It's just something you don't do and people like us who have legitimate questions are seen as denialists and sinners. I have millions of questions, but am afraid to ask because of the way I've been threatened so far on these forums. 

Well, you are welcome to email-pvt them to me, I'm curious if we have the same questions.

[Ann]

Please retract your claws. This was merely my introduction, as advised to do.

Joe wasn't replying to you in that post, Darren, he was responding to Etay's post - the one he quoted. Joe replied to you in his next post.

I'm also interested in hearing what your questions are. Ask away!

Ann

[blackwingbear]

I am taking (and have taken) Bactrim for an extended period of time. I do not feel (considering health and and medical reasons ) that there is really a need to continue taking antibiotics unnecessarily. Bactrim (and many other antibiotics) do mitochondrial damage to the cells. Taking an excess of antioxidants often has the exact same effect as antibiotics (depending on area of body and specialty). Would I not be able to reduce damage at a cellular level by stopping this dependence on antibiotics and instead maintaining a high-level of antioxidants in my system?

[blackwingbear]

Welcome Darren .

Thanks!

[RapidRod]

I am taking (and have taken) Bactrim for an extended period of time. I do not feel (considering health and and medical reasons ) that there is really a need to continue taking antibiotics unnecessarily. Bactrim (and many other antibiotics) do mitochondrial damage to the cells. Taking an excess of antioxidants often has the exact same effect as antibiotics (depending on area of body and specialty). Would I not be able to reduce damage at a cellular level by stopping this dependence on antibiotics and instead maintaining a high-level of antioxidants in my system?

What is your CD4 count?

[blackwingbear]

What is your CD4 count?

"274 working on 300" to quote my doctor.

my viral-load was under 50  (undetectable) at last count.

[RapidRod]

I was on Bactrim for 5 years until I could keep my CD4 above 200 for three consecutive labs and then it was discontinued.

[blackwingbear]

I was on Bactrim for 5 years until I could keep my CD4 above 200 for three consecutive labs and then it was discontinued.

So, it is possible that it should have been discontinued in my case?

[Hellraiser]

Well were you CD4's very low for a while?  They prescribe Bactrim as a prophylaxis for PCP you're taking it as a preventative to not get sick.  If your immune system can fight off the PCP without the Bactrim that's when they take you off of it.  There are also alternatives to Bactrim: Mepron and Dapsone.  Mepron is inordinately expensive but the manufacturer can assist you with it.

With that said.  I was on Mepron and Azithromycin but once I began feeling better I discontinued both.  I do not advise anyone else to do so but considering my history of not having any issues with an extremely low CD4 count and feeling much better (meaning my HAART was working) I discontinued using both about a month ago when I wasn't able to get the azithromycin filled.  I also may be over the CD4 count necessary for my body to handle this (albeit not 3 tests worth) but I won't know that result until next friday.

I'm about to be a hypocrite, but honestly these people went through med school and know a few things that you and I do not, despite our diligent research into our very specific disease.  If your doctor tells you to do something you should probably listen.

Edit: Also BWB, you are replying to everyone's posts one at a time and it's driving me insane.  You can respond to everyone much more easily than that and in one post.  When you try to quote or reply to a thread any recent posts are under your post and you can either copy paste or quote from each of them in turn.

[mecch]

I am taking (and have taken) Bactrim for an extended period of time. I do not feel (considering health and and medical reasons ) that there is really a need to continue taking antibiotics unnecessarily. Bactrim (and many other antibiotics) do mitochondrial damage to the cells. Taking an excess of antioxidants often has the exact same effect as antibiotics (depending on area of body and specialty). Would I not be able to reduce damage at a cellular level by stopping this dependence on antibiotics and instead maintaining a high-level of antioxidants in my system?

That's a really byzantine question.  Did you ask a doctor?

[Hellraiser]

Oh and in response to will anti-oxidants take the place of PCP prophylaxis in Antibiotic form the answer is no.

[Miss Philicia]

So, it is possible that it should have been discontinued in my case?

Depends what the two labs were previous to the 274 result.  If they were both less than 200 then it would be advisable to wait a bit.  If they were above then your doctor should have discontinued it.

[blackwingbear]

I'm about to be a hypocrite, but honestly these people went through med school and know a few things that you and I do not, despite our diligent research into our very specific disease.  If your doctor tells you to do something you should probably listen.

Edit: Also BWB, you are replying to everyone's posts one at a time and it's driving me insane.  You can respond to everyone much more easily than that and in one post.  When you try to quote or reply to a thread any recent posts are under your post and you can either copy paste or quote from each of them in turn.

I attempt to try to learn that which I do not know. That being said, I don't put anyone or any advice on a pedestal... if it doesn't make sense to me or they are unwilling to explain I WILL question it. I don't "just-go-along-with" ANYTHING if I can help it.

If several people are raising different points, dealing with them all in one statement doesn't work for me. Sorry.

[blackwingbear]

That's a really byzantine question.  Did you ask a doctor?

Yes, and received a blank gawking stare in response.

[blackwingbear]

Oh and in response to will anti-oxidants take the place of PCP prophylaxis in Antibiotic form the answer is no.

HUH? That wasn't my question...

[Inchlingblue]

Echoing others, Dr. Gallant says:

Bactrim is taken to prevent Pneumocystis pneumonia, which you're at risk for if your CD4 count is under 200. If your CD4 count rises to above 200 and remains there for 3-6 months as a result of antiretroviral therapy, then you can stop taking Bactrim.

and

If you've had three CD4 counts above 200 over a 3-6 month period, it's OK to stop Bactrim, especially if your viral load is undetectable.



LINK:

http://www.hopkins-hivguide.org/q_a/patient/opportunistic_infections/fungal_infections__including_thrush__pcp_and_cryptococc/re__bactrim_continuation.html?contentInstanceId=384279

http://www.hopkins-hivguide.org/q_a/patient/opportunistic_infections/fungal_infections__including_thrush__pcp_and_cryptococc/bactrim.html?contentInstanceId=384297
 

[Ann]

Yes, and received a blank gawking stare in response.

Maybe it's time to look for a new doctor. Your question about bactrim is a pretty basic one and he should have been able to address it quickly and succinctly. It's not only ok to question your doctor, it's essential in order to have a good working partnership. Yes, partnership. You both are working towards keeping you healthy, so it's a partnership. Any doctor who doesn't treat the doctor/patient relationship as a partnership isn't worth bothering with.

Ann

[alliance]

Welcome, Blackwing!
I would also suggest shit-canning a doctor that gives you a blank stare in response to a reasonable question. I've been to several docs lately, GI. Id, surgeons etc., and haven't stuck with the same one except for my ID doc. If your not getting answers, or care, I would suggest moving on.  It was hard for me to do at first, but I dont regret it at all. Maybe get a personal reference, not a referral, from a doc not involved in your issue or someone in the business who isnt bound by policies and procedures to refer you to another blank staring doc.  Some of my worst specialists were referred to me by my family doctor.
Good luck, and again welcome-

[edfu]

Would I not be able to reduce damage at a cellular level by stopping this dependence on antibiotics and instead maintaining a high-level of antioxidants in my system?

Maintaining a high level of antioxidants in your system instead of taking an antibiotic--in this case, Bactrim--might reduce hypothetical damage at a cellular level, but the antioxidants will not prevent PCP from occurring, which is the reason for taking the Bactrim.  PCP causes exponentially greater damage than taking an antibiotic. 

[mecch]

If you want more info on supplements + HAART (holistic + science) see california doctors such as Jon Kaiser.
Its not mainstream HIV medicine and you might want to switch doctors if your doctor doesn't want to support your interest, here.

Its got nothing to do with taking antibiotics to prevent infections when you have low Tcells.

[joemutt]

Hi Darren, welcome to these boards. 

[Assurbanipal]

Darren

I hated Bactrim.  I always felt mildly itchy -- and felt like a vampire avoiding the sun and only coming out when the sun was low. I counted the days down from my first tcell count over 200 until I could take my labs and get off of it.

Course, I hated the little nose thing that tethered me to an oxygen  tank for weeks after I got out of the hospital from PCP even more.

So, if it is a choice between Bactrim and a serious risk of PCP ...



That said, most people go off Bactrim after tcells go over 200 for a while.  Some people may still need Bactrim though -- but that is usually people who got PCP when their tcells were high.


I agree with the comments that a good doctor is really important.  Does your doctor practice full time in HIV and infectious disease?  How many patients does (s)he see per month?  Even though it may feel a bit awkward to ask these questions, remember the doc works for you, not the other way around.

Best
A

[blackwingbear]

Maybe it's time to look for a new doctor. Your question about bactrim is a pretty basic one and he should have been able to address it quickly and succinctly. It's not only ok to question your doctor, it's essential in order to have a good working partnership. Yes, partnership. You both are working towards keeping you healthy, so it's a partnership. Any doctor who doesn't treat the doctor/patient relationship as a partnership isn't worth bothering with.

Ann

GOOD point, unfortunately with a lack of insurance it isn't feasible.

[blackwingbear]

Welcome, Blackwing!
I would also suggest shit-canning a doctor that gives you a blank stare in response to a reasonable question. I've been to several docs lately, GI. Id, surgeons etc., and haven't stuck with the same one except for my ID doc. If your not getting answers, or care, I would suggest moving on.  It was hard for me to do at first, but I dont regret it at all. Maybe get a personal reference, not a referral, from a doc not involved in your issue or someone in the business who isnt bound by policies and procedures to refer you to another blank staring doc.  Some of my worst specialists were referred to me by my family doctor.
Good luck, and again welcome-

Thanks for the advice but unfortunately with a lack of insurance that isn't possible.

[blackwingbear]

Maintaining a high level of antioxidants in your system instead of taking an antibiotic--in this case, Bactrim--might reduce hypothetical damage at a cellular level, but the antioxidants will not prevent PCP from occurring, which is the reason for taking the Bactrim.  PCP causes exponentially greater damage than taking an antibiotic. 

Given that my levels are outside of what is feasible for PCPneumonia to attack, would it be a concern currently? I don't know, but risking damage to every cell seems a bit much.

[blackwingbear]

If you want more info on supplements + HAART (holistic + science) see california doctors such as Jon Kaiser.
Its not mainstream HIV medicine and you might want to switch doctors if your doctor doesn't want to support your interest, here.

Its got nothing to do with taking antibiotics to prevent infections when you have low Tcells.

Interesting! Thank you for that!