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Author Topic: Getting on with Life Part 2  (Read 2728 times)

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Offline tednlou2

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Getting on with Life Part 2
« on: January 09, 2010, 01:21:47 AM »
If ya read my other post, you know I went on the trip to Florida--first vacation since diagnosis.  I had a great time and was very active. 

Well, I've been so tired this week.  I just haven't felt like doing much besides watch TV.  At first, I thought this is just normal after going on a long trip.  Then, I noticed I felt so tired after eating.  I began thinking about liver issues.  I'm not on HIV meds yet, but I have taken my share of Tylenol over the years.  I'm a worrier ya know.  My AST was a little high last time for the first time at 75.  I don't have any other liver symptoms, so I don't think it is that. 

I know the meds questions is a big issue for many.  I know I've mentioned how the hospital put me on 4 days of Atripla one year ago without my knowledge.  I was thinking today that even recovering from being sick, I think I felt better with more energy one year ago.  Not to get too personal, but I was so horny every day and had more energy.  Those 4 days of Atripla brought my vl down to under 400.  Over the year, my vl has bounced around in the lower thousands with the last reading of 27,000.  I know 27,000 doesn't sound like much, but 400 is better. 

Anyway, my point is that remembering how I felt with a vl under 400 and CD-4 over 1,000 has caused me to begin debating starting meds.  My CD-4 over the year has stayed around 800 with % bouncing between 21 and 27--back and forth. 

I'm curious whether anyone has regret starting meds when they did--thinking they started too early??  I realize that many didn't have a choice.  I know having the choice is good problem to have.  However, it is a big commitment and I guess it starts the clock on any toxcitiies and possible resistance.  I just don't think this is normal fatigue.  There were others who went who are in their 60's who are already on another trip.  They don't seem to be so tired; however, they travel a lot.  I've been thinking a lot about what Dr. Gallant told me in a question I wrote to him.  He said it is not good to be walking around with vl near 30,000.  However, I've talked to so many on here who were fine without meds for 10, 15, and 20 years.  Who knows.  This may just be normal fatigue and maybe I need to take vitamins or need Gatorade to replace electrolytes.

Anyway, any thoughts you have about whether you made the right decision or not when you started meds would be appreciated.  It is very strange.  Last week in Florida, I felt so great for the most part.  I wondered how it could be I had HIV.  Maybe I'm just crashing this week from my solar high last week.   

Offline leatherman

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Re: Getting on with Life Part 2
« Reply #1 on: January 09, 2010, 01:52:03 AM »
and possible resistance.

 Maybe I'm just crashing this week from my solar high last week.   
Sorry to hear that you're pooped this week. You might even be suffering from some emotional let down as an after-effect of the vacation. I'll leave it to others to discussion when to start the meds, since I started on them because there wasn't time for a debate and no choice in the matter; but I did have a couple comments.

resistance usually happens when you're on a med for a while and go off of it, allowing the HIV to mutate slightly against that med as the amount of  med in your system decreases.  Although the toxic side effects might begin by starting meds, resistance is something that usually doesn't happen as much if you stay adherent to your regimen. So don't worry too much about the resistance issue.

and there is such a thing as "Seasonal affective disorder". Although this wiki entry (http://en.wikipedia.org/wiki/Seasonal_affective_disorder) discusses the severe version of it as a mental disorder, trust me, living up in northern OH for 25 years, everybody suffers from it to some extent when it's cloudy, cold, and snowy from Oct to Mar. Several friends and I used to go tanning during the winter months just to combat the "winter blues". (and to get warm!) You'd be amazed at how much a little extra light can make you feel happier, healthier, less sick, and more energetic. Perhaps some "light therapy" could work for you too.

Definitely mention this to your doctor. There are all sorts of things they can check in your lab work that could be the culprit or indicate what the problem is.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Buckmark

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Re: Getting on with Life Part 2
« Reply #2 on: January 09, 2010, 12:36:16 PM »
Quote
I'm curious whether anyone has regret starting meds when they did--thinking they started too early??

Regret, in my opinion, is usually pointless and often frustrating.  And it often based on an assumption that things would have worked out different if you made another choice, which you usually don't know for certain but rather construct in your mind.  In other words, it's wishful thinking (which I admit to engaging in from time to time). 

A better way of thinking about this is that you try to make the best decision you can with the information you have available.

Personally, I have no regrets about starting meds.  I could see a decline in my general overall health after being poz for 15 years w/o meds, and it was clearly time to start.  A lot of the annoying problems I used to have before meds (colds, bronchitis, sinus infection, shingles, etc.) have gone away.  I don't know for certain that's due to the meds keeping my HIV under control, and giving my immune system a break, but I think there's some correlation. 

Is my energy level higher?  I'm not so sure about that.  I have noticed that, HIV or not, my general overall health and energy levels seem to go through cycles sometimes.  You could be experiencing this, or other things like seasonal affective disorder as leatherman suggests, or you could just have the post-vacation blues.

I would defintiely mention this to your doctor, but I wouldn't make a decision to start meds based solely on feeling fatigued.  You and your doctor should discuss the trends in your CD4 level and percentage, viral load, etc.  In the meantime, a multi-vitamin, a gatorade, or just some other healthy change in your daily routine wouldn't hurt.  And for God's sake, lay off the Tylenol!  ;)

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline tednlou2

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Re: Getting on with Life Part 2
« Reply #3 on: January 10, 2010, 01:17:41 AM »
Thanks for the comments so far and I hope to hear from others.  I know what depression can do.  I have been dealing with depression before being poz.  I know it can cause physical symptoms.  This just seems different.  It is probably from being so active when I hadn't done anything active in a while due to winter. 

About the Tylenol--I had back surgery about 10 years ago and have taken it in the regular form and via prescriptions.  I don't take more than the daily recommended amount.  My liver tests have always been normal until the last test.  The AST was slightly elevated at 75--should be under 50.  The ALT was perfect.  I guess it should be checked again to see if there is a trend or whether it was just a blip. 

I did start a beta-blocker over the summer-- Atenolol.  I had some initial fatigue problems when I first started taking it, but nothing bad.  I was just reading that Atenolol can cause fatigue issues, elevated liver enzymes, cold hands and feet (which I've been having) as well as other things like abnormal heart rhythm.  I've also noticed my left ear gets really red--just the one ear.  Everything I've read about that is fatigue and stress. 

So, I'm going to make an appt with the doc to check my liver, nutrients and stuff.  Maybe I'm just depleted.  Maybe I just wore myself out.  It just feels like a mild case of mono or something--feeling tired all day and falling asleep early with some mild dizziness.  And, I do have HIV after all that is untreated.  I guess I shouldn't discount the affect untreated HIV is doing.  I'm asking my body to fight the virus all by itself and I go on a trip where we were getting up everyday at 7am and going to bed late and put over 2,000 miles on the car.   

Henry, I will definitely check everything before deciding to start meds.  It very well could be depression that is causing this.  I went from warm and sunny to highs in the teens and snow storm.  It has been gloomy here since I got home.  And, even though I had a great time, the trip stressed me out-- trip stress was the reason for the original post.  On the trip I got a couple white spots/ulcers on the back of my throat and my throat was very red.  The spots/ulcers went away and I never got a sore throat.  I've been told stress can cause all that.     

Okay, I would appreciate any other thoughts and I'll let ya know what I find out.  I know I probably sound like a hypochondriac.  I acknowledge this all could be mental.           

Offline tommy246

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Re: Getting on with Life Part 2
« Reply #4 on: January 10, 2010, 05:59:46 AM »
I started atripla early december at cd4 590 and feel totally re-energised i was always out of energy and also feel mentally 100 % secure as i was a worrier like you before reguarding illnesses the body fighting the virus 24-7 scared me more than the meds which i am not the least worried about , nowadays they are great compared to earlier years and constantly improving , and if your adherent and achieve non detectable the virus cant generally mutate .
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Ann

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Re: Getting on with Life Part 2
« Reply #5 on: January 10, 2010, 06:27:09 AM »
On the flip-side, I've been poz since the spring of '97. I'm still not on meds and I don't regret it one little bit. My numbers are in my profile.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline StacheBC

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Re: Getting on with Life Part 2
« Reply #6 on: January 10, 2010, 11:50:20 AM »
Hi Ted,

Looking at your numbers they look great, well in the normal range and your viral load is relatively low.
So numbers alone would tell me to wait before starting treatment, unless you had some underlying issue that could be caused by your body being in constant fight with the virus. Fatigue could be one of them, although I would take that into account in the long term picture... it's quite common that people that come back from vacation will feel tired and worn out.
I'm on meds, came back from vacation as well and the first week back has been tough to get back into the swing of things.

Ted you seem like a real sweetheart, but I do notice that you tend to worry a lot about your health, almost obsessing about it. My main concern would be that you'd be going on med with numbers that really don't call for them, to maybe to treat a seasonal fatigue related to a end of vacation syndrome... (that even people on meds will get) only to find yourself then focusing on what the meds may or may not be doing to your liver.

I say this with all respect, but have you ever thought about going for some counseling to maybe work on obsessive worry patterns you might have, and I say this because when I was younger I sometimes would let worry rule my life... I still worry like most human beings, but I now can recognize certain patterns.

In my case with a CD4 around 400 + and a CD4% in the teens, meds did improve my quality of life. I have no regrets what so ever to have started, plus at 43, I didn't see why I should wait any longer.
Try to look into some counseling, review your diet (more fresh fruit and vegetables), review how active you are and incorporate more walks and exercise (I enjoy putting my MP3 player in my ears and sometimes looking like a nut, dancing in you own condo in these cold raining winter days... not only does it make me move, it brighten up my spirits).  After you've reviewed some of the basics, see the med as an option that is open to you now or later on

Giving you a great big hug!.

Offline leatherman

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Re: Getting on with Life Part 2
« Reply #7 on: January 10, 2010, 12:16:54 PM »
(I enjoy putting my MP3 player in my ears and sometimes looking like a nut, dancing in you own condo in these cold raining winter days... not only does it make me move, it brighten up my spirits)
:D ;D ROFL
Like the tree falling in the woods, do you really look like a nut, if there's no one there to see you? ??? thank goodness my dogz can't use the digital camera or there would be pix of me dancing around like a fool to prove my mental instability. :D

but in seriousness, ruling out any actual physical causes and seasonal disorders, simple depression kinda comes with the territory of having HIV and depression itself puts a damper on alertness, happiness and energy. (personally, I've always been amazed at how "feeling blue" thinking about my issues can make me so damned tired when all I did was lie in bed, thinking and crying a little bit. It's truly crazy. ::) ) To really fight this disease and it's associated problems, besides just popping pills, visiting doctors, and having tests run, you have to also be pro-active on fighting off the depression with activities, exercise, and positive thinking. ;)

Hopefully getting some tests run will run out anything serious, and it'll just be the winter blahs going on for you Ted. Keep us informed about what the doc says. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline tommy246

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Re: Getting on with Life Part 2
« Reply #8 on: January 10, 2010, 02:00:40 PM »
In response to anns post  basically its an individual thing i felt like crap ann feels ok how do you feel ? thats the bottom line and would being on meds help you with your illness paranoia or make you worse worrying what the meds may or may or may not do.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Ann

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Re: Getting on with Life Part 2
« Reply #9 on: January 10, 2010, 02:11:04 PM »

basically its an individual thing i felt like crap ann feels ok how do you feel ? thats the bottom line


I totally agree. Having said that, if the OP's only problem is fatigue, if I were him I'd fully explore other possible causes of that fatigue before jumping into the meds. Not everything we experience is directly hiv-related, even though it can be very tempting to think so. I know I did in the early days of my diagnosis, but as time went on I began to realise that it just isn't true.

Good luck sorting this out, Ted. You've got my support no matter what course of action you decide to take.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tednlou2

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Re: Getting on with Life Part 2
« Reply #10 on: January 10, 2010, 11:51:41 PM »
Thanks again for your thoughts.  As I said, I realize I've had depression/anxiety issues this year and constantly worrying about my health.  I know depression/stress hormones can manifest into physical symptoms.  This just seems so different.  I just feel very tired and have been a little dizzy with discomfort in my left side/gut...falling asleep so early and waking up confused....very red left ear.  I know, it all sounds like normal fatigue and stress and I'm stressing more and making it worse.   

I wasn't suppose to get my bloodwork done for another month; however, I thought maybe it would be helpful to see the numbers when I felt crappy.  So, I'm thinking about going ahead and doing it.  If everything checks out, then I guess it is all mental/depression.  I suppose it will be time for some serious depression meds or something.  As I said, I felt so great last week.  Maybe it is just my body coming down from the high.  I do believe depression can cause you to feel like there are physical things wrong.  I also believe in chiropractors.  I know I usually feel better after an adjustment.

Before I go, I want to say I realize my little issues are very small in comparison.  I do think it is a good debate--maybe others are/have experienced the same things.  You guys have been great with your taking time to respond to someone who is probably just worrying too much.

Offline tommy246

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Re: Getting on with Life Part 2
« Reply #11 on: January 11, 2010, 01:51:24 PM »
Ted i just wanted to add depression and stress are major causes of having no energy , did you feel energised on your recent hols if so then that answers your question. Im older than u 49 so that was a big part in me starting meds as well if i was your age with your numbers i might have waited a bit longer. Also i read a lot of what dr gallant wrote and he also strongly influenced me he seems to know his stuff. Good luck and try and stop worrying my friend, have you tried yogga or something else to relax you a bit.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline tednlou2

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Re: Getting on with Life Part 2
« Reply #12 on: January 12, 2010, 07:31:46 PM »
I called and left a message for my doctor yesterday. He never called me back.  I called today and another doc agreed to see me next Tuesday.  I asked her whether I should go ahead and do the bloodwork now, so we'd have something to look at Tuesday.  She said to wait.  I don't understand people sometimes.  There is nothing she can determine by looking at me.  When I see her, she will order bloodwork and I'll have to wait longer for the results.  It just seemed better to go ahead and do the bloodwork now.  Now, I'll have to make another appointment to get the results.  Oh well. 

One more thing---I just found out my friend has been having the same fatigue issues.  He was at my house on my b-day (Jan 4th) right before I started feeling crappy.  Maybe he had some viral thing that I caught.  My other friend says it is all psychosomatic from turning another year older.  I haven't felt depressed over turning a year older--unless it is subconscious. 


Offline leatherman

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Re: Getting on with Life Part 2
« Reply #13 on: January 12, 2010, 07:39:20 PM »
When I see her, she will order bloodwork and I'll have to wait longer for the results.  It just seemed better to go ahead and do the bloodwork now.  Now, I'll have to make another appointment to get the results. 
sounds like two appts mean more $$$ in someone's pocket :D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline max123

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Re: Getting on with Life Part 2
« Reply #14 on: January 14, 2010, 10:42:34 PM »

I did start a beta-blocker over the summer-- Atenolol.  

ted, do you have cardiovascular disease?

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline tednlou2

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Re: Getting on with Life Part 2
« Reply #15 on: January 15, 2010, 02:29:09 AM »
I hope I don't have cardiovascular disease.  They put me on a beta-blocker for high blood pressure and my resting pulse was always around 100.  I don't think you have to have cardiovascular disease to use the drug.  Why?  What have you heard?

I can tell ya that they say it can make ya constipated.  It has made me regular. 

Offline max123

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Re: Getting on with Life Part 2
« Reply #16 on: January 15, 2010, 06:35:27 AM »
ted,

i was trying to figure out why you were put on atenolol., usually that's a drug used to treat hypertension secondary to cardiac dysfunction...b1 blocker. i guess that if your hypertension and racing heart are stress induced, maybe your clinician ordered it to counteract the effects. you should find out the exact reason that you're on it. as an anti-tensive agent, atenolol reduces blood pressure, which may add to your feeling sluggish...if bp is too low. check it out.

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline tednlou2

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Re: Getting on with Life Part 2
« Reply #17 on: January 16, 2010, 02:25:01 AM »
Max,

Thanks for the suggestion.  I will ask about Atenolol causing the fatigue when I see the doc Tuesday.  When they started me on it, my bp was reading like 158/105 with pulse around 100.  I'm sure it was all the stress.  I know the panic attacks I had so often were greatly reduced after starting Atenolol. 

When I check my bp, it is usually like 108/68 with pulse around 68.  My dad was telling me this was too low, but my brother-in-law who is OBGYN says not to worry unless 90/60 or something.  He said even then, it would probably be okay.  He said if something was wrong, I would be really dizzy.  He is a young doc, so I'll get a second opinion on that.

I appreciate you taking the time to respond and care.

Offline tommy246

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Re: Getting on with Life Part 2
« Reply #18 on: January 16, 2010, 05:21:47 AM »
i know alot about blood pressure and stress from having to take anti stress tablets for a couple of months about 10 years ago caused by work before my hiv days it sends your b. p. through the roof, your normal b. p. you quoted of 108 over 68 is excellent as is the resting pulse, your high blood pressure is clearly down to stress which also doesnt help your immune system as you know ted you really need to tackle your stress/anxiety problems head on the sooner the better, regards tommy
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline max123

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Re: Getting on with Life Part 2
« Reply #19 on: January 16, 2010, 06:55:16 AM »
ted,

no problem, man....i'm always willing to lend a hand where i can. that's what this forum is designed for...talking about and learning from the issues that we pozzies endure.

wow, yeah your systolic & diastolic pressures were high. as said, perhaps your doc prescribed the atenolol to counter that. i guess the question i would ask yourself is have you learned to manage stress better since then, are you eating a lower sodium diet. in the absent true cardiovascular disease, it may be that your doc can consider discontinuing the atenolol or a dose reduction.

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

 


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