Is THAT all there is?

[Strayboy74]

There isn't anything anyone can tell me that I don't already know about the cholesterol, so don't try.  I exercise and eat right, taking MANY vitamins.  And I've been in cholesterol studies before it was even chic... in fact, I'm one of the subjects in many of the original case studies from the 70's... 

Now, because of my cholesterol friendly diet, I've developed anemia.    I eat bland, tasteless foods, with no fats, no cholesterol and no flavor.   My only happiness was a pint of icecream which you all already know about.

And, my crappy t-cells are at 326, and my vl at 69037...  the cusp.

My doctor called me and wants me to come in tomorrow.... but wouldn't tell me why.  I think he's going to start me on HIV medications.  I really don't want to lose my job because of those "clouds" of mental funk that I've read about people having....  I really don't want to be homeless, on the street, and without a highspeed internet connection... I'm starting to panic.

Is this it?  Is this how you feel before starting meds?



-joseph

[attachment deleted by admin]

[koi1]

Hey Guy,

I was really scared to start meds, but knew the virus was destroying me day by day. It got to the point where nausea was a daily reality as well as uncontrolable diarrhea (I mean pure water). My life was getting worse and I was losing weight with each day (30+pounds). After 7 doses of of sustiva and truvada I am doing well. I can at least control the diarrhea and I can eat without wanting to puke for hours after. I think letting the virus destroy your immune/digestive system is a mistake. The doctor says it will be at least three months before I am able to regain the muscle mass I lost.

So starting meds is scary, but what the virus can put your body through is tragic. I am a teacher and I have started work on meds and I have been feeling fine. A little tired, and a little spacy, but that is about it. Losing my job and my insurance was something I thought about, but I can honestly say that it is less of a worry now that I have begun to recover, and am working just fine.

rob

[blondbeauty]

Joseph,
You won´t necessarily feel your mind is "cloudy". It depends on the meds. Specially Sustiva. My first nights were foggy and cloudy. The day after my first dose I could not drive, but I did it and went to the gym. The effects did not disappear till 7 in the afternoon, just 5 hours before the next dose...But I did a normal life. I had to hide from my family who know nothing about my status and I was able to do it. I also had to fly (working) to Santiago de Chile and start serving meals to 300 passengers at 2.00 am (two hours after taking Sustiva). I dropped glasses, ice cubes, drinks...on the plane´s carpet. Nobody noticed and tiredness could have been the best explanation.  A few days later side effects subsided.
3 days after starting my meds I felt panic. I thought it had been a mistake starting meds "so early". My life had changed forever. But it was the same feeling I had when I signed the credit to buy my house: 30 years paying for a house is a much greater responsibility that taking two pills a day. A week later I was very happy with my decision.
Don't be afraid of starting meds.
It is easier than what you think.
Good luck tomorrow.

[Boo Radley]

joseph,

I can't offer advice about cholesterol but I'd advise you to wait for another blood draw before thinking about HAART.  Your numbers are, as you said, on the cusp, but they are still good enough that starting HAART isn't mandatory (Others disagree with me but this is my opinion based on my life and experience with HIV).  What was your last CD4 count?  If it was above 350 I'd wait until the next tests to see what the pattern is. 

Don't let anyone talk you into HAART unless you are psychologically prepared to adhere to the regimen as much as possible, regardless of side effects (or to switch to another drug if side effects are intolerable or dangerous).  In 1998 my doc got me at a weak point to start HAART and I stopped within 5 weeks because I couldn't take the side effects and I was not committed to adherence at the time.  I started HAART in October, 2004, and have had a very easy time.  The few side effects were short-lived and I adhere to my regimen like clockwork most of the time.

It's highly unlikely you're going to become jobless, homeless, destitute, on SSD or SSI upon HAART initiation.  You've got to know what a wide variety of people there are here who have been on meds and employed for many years.  Starting HAART is a scary step in the process but it is no longer as difficult on most patients as it once was.

Best of luck,

Boo

[Tucsonwoody]

I also cannot offer advice especially since I'm pretty new to the whole being positive thing.  In my case my numbers were so low that it wasn't really a matter of choice and have been very lucky so far to have minimal side effects.

Did you guys see the news article on the main page of aidsmeds today?  "Study Says Early Treatment Associated with Better CD4 Gains"

Might give you some more to think about.

Whatever choice you make, I wish you the best and look forward to hearing how you're doing as time goes by.  Like Boo, I can't see those worst case scenarios for you but can understand your feeling that way now.

Kevin

[poet]

Joseph, from someone who knows his (former clients') sphincters very well (or how else do you get to offer prostate work?) see if this helps a bit?:

Ok, I won't touch your cholesterol issues and agree that you probably know best.  I can hope, though, that someone can find you a diet/food selection which gets good food to your mouth instead of plates of deprivation.

I let me cd4's reach somewhere between 200 and 250, predating viral load by a century or so.  Now my doctors like yours could try to do anything they wanted, but unless I was onboard, and I wasn't until my cd4's reached MY point of participation, I would change doctors rather than be force fed meds.  I agree with Boo, that until you are ready and willing, don't start them.  

I have been on Sustiva since it was first available.  The morning of the first day only was a struggle.  After that I may feel the once in awhile non-focusedness, but nothing which my brain hasn't learned to work around. Now if your concerns about losing your job are connected to homelessness fears, this, I hope, will answer you.  I was still doing bodywork (massage) 7 days a week post meds.

Let's get more guys to post here and hope that the stress will lift from you.  Best, Win

[jack]

the drugs effect everyone differently.  I have been on them for 18 years. The first 7 or 8 years, I was tired but managed to work everyday and entertain clients everyday without many problems. Then things get a little sketchy.  You will be able to do your job. Start taking meds and plan as if you are gonna live a normal life. If you can stay away from the drugs that cause nuclear diahrea,you wil be ok, its hard to hide that.

[ACinKC]

the drugs effect everyone differently.  I have been on them for 18 years. The first 7 or 8 years, I was tired but managed to work everyday and entertain clients everyday without many problems. Then things get a little sketchy.  You will be able to do your job. Start taking meds and plan as if you are gonna live a normal life. If you can stay away from the drugs that cause nuclear diahrea,you wil be ok, its hard to hide that.

However, if the meds turn you into a raging Republican please seek medical attention immediately and stop taking them.

I have had the fog a little here and there but Jack and I are alot alike i think.  I have to get and entertain clients and track them and all communication daily.  As VP of sales for the company and being on meds for over a year I would say im not the old me but I am NOT incapable of doing my job.  Instead of going 180 miles an hour each day I am only going about 90 miles an hour.  But that was a lifestyle choice and change I WANTED to make to keep my sanity, not because of the meds.

[Strayboy74]

BTW, Neil is a geneticist whose masters work was in retrovirus' (He kind of adopted me when I was 17)


(READ FROM THE BOTTOM UP)

Neil-

Working out the whole cholesterol controlling/optimum nutrition thing and trying to gain mass are sometimes seemingly antithetical to each other  (I've been between 130 and 145 - depending on the day, lately)  I've been eating egg whites for protein, and taking an additional protein supplement (and the countless vitamins - sugar free, no doubt).   My diet has become fat free and virtually taste free - I have a glass of red wine each evening, and take 400 mg of niacin daily (that sucks the worst).  I'm going to talk with the doctor tomorrow about Vytorin, (Simvastatin and ezemitebe -sp?) and get back on that project... but he called me to come in tomorrow before the appointment we had set two weeks from now.  So, I think he is panicking and probably wants to start HIV medications.  I'll let you know, as soon as I find out.

You must have known you were on my mind today.  I was thinking of calling you, but I got distracted.  Thanks for responding.  I'm going to the gym Mondays, Wednesdays, and Fridays to help raise the HDL cholesterol levels.  It hasn't helped a lot, but I keep trying.  I'm going to do everything I can to keep my cholesterol in check with and without medications, but as you are aware, it takes at least 60 days for your blood to go through a complete cycle of replenishment so I'll let you know when I get my next labs.

I have to say, the fear of dying has caused me more emotional distress than I'd care to admit, and I'm seeking help.  Knowing me, I'll end up living and suffering from the lazarus complex for lack of planning.

I think this is the first time you've ever seen my cholesterol labs.  Mind you, I've been with an extremely reduced fat diet, chicken and fish only (usually broiled), NO red meat, trans-fats, saturated fats, poly-... well, you get the picture.  In response to your question, yes... I DO feel tired a majority of the time.  My weekends are spent in bed (not much of a change here, except that I'm alone).  So, this is my reality. 

As you've mentioned, many of the HIV medications cause additional distress to cholesterol levels.  I feel like the shit has finally hit the fan.

Will you sit in the breeze with me awhile? 

BTW, I'd kill for a leg of lamb with that delicious sauce that you guys make OR SOME FRIED BEEF LIVER!

-joseph
----- Original Message -----
From: XXXXXXXXXXXXXXXXXXXXXX
To: Amos Joseph
Sent: Thursday, January 11, 2007 6:55 PM
Subject: Re: labs


Hi Joe,

          hey your not all that bad, once you get your viral load under control and the cholesterol.
Aren't you taking a statin drug for your Cholesterol. Get after your doctor to find you the
right drug option, I know diet and activity levels are good, so he needs to explore the right
drug for you. Higher cholesterol levels are more common in HIV positive patients, this is not
well understood and it may be less of a CHD risk factor then in HIV neg. population.

   Are you tired from the low red cell count (Hematocrit) ?

   Let me know what your Doctor says and does for you.

   Love you much

    Neil

----- Original Message -----
From: Amos Joseph
To: XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Sent: Tuesday, January 09, 2007 10:36 AM
Subject: labs


okay, here are the quarterly labs.  enjoy.

Looks like I still have a little anemia problem going on, despite the
vitamins.  And my cholesterol is alarming.  My VL has gone up and my CD4's
down.   I'm a mess.

-joseph

[aztecan]

Hey Joseph,

I'm another old timer who's been on meds for a while - going on 11 years on the same regimen.

Aside from a few months on Saquinavir that were downright nasty, I haven't had too many problems during the years.

To be sure, there were adjustments and, occasionally, I get a a tinge of nausea or other side effects, but nothing I haven't been able to handle and nothing that has prevented me from working, buying a home, saving some money (well, I try anyway) and pursuing my dreams.

I have a pretty good idea of where I'd be if I hadn't started meds and that's someplace I am not ready to go as yet.

That said, Boo, Win and others have hit the nail on the head about being ready to start meds. I was ready, but I still took a month to think about it before telling the doc OK.

You still have enough wiggle room to take your time. If you wish, have another set of labs done. Talk with your doc and air your concerns about side effects. Also remember, while some people do have side effects, others don't or have minimal problems.

I would add one more thought. When I started meds, my doc told me I could either be aggressive, fight the virus before it has a chance to do real damage, or wait and try to make up for lost ground.

It is the start of a new chapter in your life, to be sure, but it isn't the beginning of the end. When I started, I thought of it as me taking back control of my life.

Good luck with the doctor tomorrow. Whatever you decide, my best thoughts will be with you.

Edited to add, after reading your last post, I see more clearly your concerns. Not all the ARVs cause elevated lipids. I would definitely talk to the doc about this though.

 I was taking 1,000 mgs, but it didn't do much for me, except make me flush, Taking two aspirin a half-hour prior to the niacin helped.

HUGS,

Mark

[Longislander]

Hi Joseph,

I'm not on meds yet, so I can't offer you anything in that regard. Just know that me and the rest of us are here for you. It's easy to say don't worry , but please relax as best you can.

Let us know what the doc says tomorrow.

Love,
Paul

[Strayboy74]

You know...  it never seems truly real, until it's happening to you.

[Esquare]

My experience is limited but I was one of those that had to start treatment immediately. I'm on Atripla and I'm an executive in charge of an entire office and expected to perform at a high level. I've yet to miss a beat. Nothing has happened that has effected my decision making. My problems mainly come from the overriding thoughts in my head saying "dude, wtf you've got HIV" and then good guy thoughts coming back and saying "dude you are far healthier since you started meds so chill out." Good luck with your decision.

[Strayboy74]

My experience is limited but I was one of those that had to start treatment immediately. I'm on Atripla and I'm an executive in charge of an entire office and expected to perform at a high level. I've yet to miss a beat. Nothing has happened that has effected my decision making. My problems mainly come from the overriding thoughts in my head saying "dude, wtf you've got HIV" and then good guy thoughts coming back and saying "dude you are far healthier since you started meds so chill out." Good luck with your decision.

I'll be sending you an email, if my fears are realized....   "GOT A JOB???"
-joseph

[rick21007]

Hey Joseph----got no advice as far as the meds go but I do know oxygen helps a lot which ever way it goes, so BREATHE my friend--that good San Francisco air and let that air connect you to the rest of us.   I figure I will be right where you are one of these days soon enough and I will come crying on your shoulder.  Speaking of shoulders I really like the gym I just joined----started weight training and sure enjoy it, if only for the way it relieves stress.  Was amazed I remembered my old routine.
Good Luck---be extra kind and gentle to yourself.

Best, Rick

[Life]

Joseph...  Your getting to the point of making a decision...  Choose the meds that are right for you and your virus.   I work just as much as I ever did prior to meds (14 months).   I eat right, work out and also put in 80+ hour work weeks.  One job is as a lead accountant and yes, I can still balance the books and hold my own on IRS audits.   The other job, I am an EMT....   Don't let the meds change a thing...   Just don't allow your virus to continue on its destructive path, otherwise its going to make the decisions for you..

Best Wishes my friend..

[ndrew]

Hi Joseph,

I am into three months of Atripla, and although I have worried and whined, I don't regret starting.  I went from VL 48K, CD4 362, 21% to VL under 400, CD4 450 and 25% in three months and I am pretty happy about that.  I started when I was ready (I did not want to wait too long, but I did not want to rush).  Now I think I could have started sooner.  

Because I am a professor at an R1 institution (reasearch most important) I am really flipped out about sides and mental fog, however talking to a good colleague/friend, I realize some of it is age, stress, lack of sleep and a lot of other factors that are probably not related to meds.  I can live with the occasional Sustiva fog (which is most likely my fault for eating late and not sleeping well due to stress).  Most of the foggy/dizzy went away within the first 7 or so days and that has been the extent of it.  I have also worried about some depression, but I am beginning to think it has more to do with changes with my job then the meds, although there may be a correlation.

Regardless, I am happy that I have such options.

Wishin' u the best,
Drew

[Oceanbeach]

Hey Joseph,

I had already lost my job by the time I started meds.  The firm was already aware of my HIV status and I had been promoted to VP because of my "brilliant" work.  Yeah, I showed up every day and did a good job and was rewarded by being put in charge of product design and national sales.  I had been HIV + for about 2 years and the entire staff knew it.

I had spent the entire night on the bathroom floor because the tiles were cool, they seemed to offer some relief and had planned on driving to one of the border towns the next morning to get a huge bottle of antibiotics.  I stopped at a neighborhood bar for coffee and told the early bartender about my plans.  That bartender thought I should check myself in to the ER at one of the local hospitals, so I went to St. Mary's in Long Beach.  I was given an AIDS diagnosis, put in isolation because of PCP and that was my summer vacation of 1996.

My first visitors were the firms attorneys.   They explained that the nations front runner in workers comp reform could not take the chance on a top management personnel going out on a wc claim, presented me with the pink slip to a company car, a bunch of cash and the other kind of pink slip.  I was fired that morning.

The dr at St. Mary's put me on Prozac, Norvir and some other stuff.  Norvir was 6 dosages 3 times each day, there were 30 pills total each day but on Prozac it didn't seem to matter.  I called the bartender to pick up the car and get into my house so I could have my laptop.  Every day I got the nurse to disconnect the IV so I could go for a walk, I put on my orange mask and the jeans I wore in to the hospital and started talking to risk management about safety issues in the hospital environment.  I was working again but as an independent contractor.  I had the first rough draft of SAFETY TRIVIA, Medical Industry Series finished by discharge date.

I have had no work for pay in over 10 years but I have expanded my product line to SAFETY TRIVIA, Medical Series, OSHA, Series, Hospitality Series, Agriculture Series, Small City Series, Clerical Series, Lumber Industry Series, and a few others.

A though in my mind for the past 10 years is that Peggy Lee song, "IS THAT ALL THERE IS", is that all there is, well lets keep dancing and bring down the moon.  Every side effect on ever medication has hit me by the power of three times three over the years.  I have been on the same medications for over a year (except for Sustiva since 1998), I throw up frequently and stilll after all these years have what I call a "three minute warning".  Sometimes I get a full three minutes before taking a dump without warning.

If I were in your situation, I would take a leave of absence or vacation time before starting meds because I have learned how to manipulate my life around the meds, you can do that too if necessary.  You probably know "Cowboy Tim" here on the river.  He has been on meds for about 20 years and is still working, at the same job.  He takes vacation time for every hospitalization and his employer is Kaiser Permanente, so they are also his provider.

If all else fails, I can walk you through HOPWA and a shortcut to Section 8 assistance.  Everything I ever worked for was taken away because of AIDS and I have a few tricks up my sleeve to show for 10 years of nothing.  Have the best day
Michael  

[Robert]

Hi Joe.

don't let the meds freak you out.  I guess they can be daunting, given the stories you've read on here.  But just keep in mind, it's an uncanny virus that effects each of us differently and so do the meds.  Now I have had some problems (that's an understatement) with my memory analytical skills but I'm convinced it's more to do with the virus than the meds.  You see, I waited until I had PCP (VL 500,000+.... T-cells  18) and I really took a turn for the worse.  Please don't let the fear of med let that happen to you.

Also, I'm on Reyataz, Norvir and Truvada.  It's been good to me.  Now I'm sitting at 634 t-cells (32%) and have been undetectable after 3 months.  I've been on meds for 3 years.  And, as far as HAART goes, they're somewhat cholesterol friendly.

Good luck...robert

[Queen Tokelove]

Joseph,

Don't be scared about the meds, they are there to help despite those nasty side effects. And who knows, you may be one of the fortunate ones who doesn't have side effects or may be short term. I wish I could give you more advice but I am currently not on meds and I have been going by the posts I have seen here. I also agree with Robert on how the virus affects us all differently. Try not to think the worse hon. It's going to be ok, I know that sounds lame as hell but it's true. From what you've said, you eat right and take very good care of yourself, you have that in your favor. *HUGZ*

[Esquare]

I'll be sending you an email, if my fears are realized....   "GOT A JOB???"
-joseph

LOL. No job openings at the moment but seriously, hang in there man.

[Strayboy74]

LOL. No job openings at the moment but seriously, hang in there man.

I wouldn't really hit you up for a job... besides, you probably live in someplace terrible... like Wyoming.

-joseph

[Esquare]

I wouldn't really hit you up for a job... besides, you probably live in someplace terrible... like Wyoming.

-joseph

Nah, its worse than that. I live in the Deeeep South.

[Strayboy74]

Nah, its worse than that. I live in the Deeeep South.

LOL

[jonsi]

I think there's not much to be afraid these days about meds... first of all, you don't know yet if you'll start with them or not, and second, they'll probably get you to take the most recommended nowadays (sustiva + truvada) which do not come with many side effects. I didn't get any side effect, and I've been taking them for three months already... the most they did was the first weeks, i think coming from sustiva, was that I felt a little "high" after taking them... but it only lasted for a few hours... I feel completely normal, a lot of energy. It's true, everyone gets different symptoms, but it's better to be positive about it that negative. Some stuff I've read and also my doctors warned me about it, it's that sustiva can make a depression worse than it is, so do not give in to depressions or feeling lost, or these feelings, just in case.

[Mike89406]

I'm on Atripla and it seems to be working fine for me i get the Sustiva high at night especially when I eat an hour after taking the meds.  I was initially concerned with the drug affecting my thinking and all however I'm taking a full load of 2 night classes a semester and working in the day. I have taken Pre-Calculus, Macroeconomics, and now Physics, and Statistics and my higher learning function doesn't seem to be affected.

As far as the cholesterol goes I'm no expert however I found that the almost daily amount of Green Tea, Black tea I drink helps keep my levels down. But don't take my word for it

https://www.ars.usda.gov/is/pr/2003/030930.htm

http://onhealth.webmd.com/script/main/art.asp?articlekey=56119

http://www.aidsmeds.com/news/20031111scie002.html   

There isn't anything anyone can tell me that I don't already know about the cholesterol, so don't try.  I exercise and eat right, taking MANY vitamins.  And I've been in cholesterol studies before it was even chic... in fact, I'm one of the subjects in many of the original case studies from the 70's... 

Now, because of my cholesterol friendly diet, I've developed anemia.    I eat bland, tasteless foods, with no fats, no cholesterol and no flavor.   My only happiness was a pint of icecream which you all already know about.

And, my crappy t-cells are at 326, and my vl at 69037...  the cusp.

My doctor called me and wants me to come in tomorrow.... but wouldn't tell me why.  I think he's going to start me on HIV medications.  I really don't want to lose my job because of those "clouds" of mental funk that I've read about people having....  I really don't want to be homeless, on the street, and without a highspeed internet connection... I'm starting to panic.

Is this it?  Is this how you feel before starting meds?



-joseph