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Author Topic: Just in case you were wondering.  (Read 3280 times)

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Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Just in case you were wondering.
« on: July 14, 2006, 01:33:42 PM »
OK, today started out in front of the toilet AGAIN! and I am wondering when this nasty side effect from Trizivir is going to stop.  I guess maybe my body is not cut out for AZT, which is a tad bit worrysome, as my virus seems to only be sensitive to AZT now.  I am going into Tucson next Monday to see my doctor, and then I will know my current numbers and chat with him about what my options are.  I do know something already, and that is I am so tired of being sick. 

I also signed up with Body Positive in Phoenix, to join a final stage study to conquer Peripheral Neuropathy.  I am not sure what the details are, but I do know someone who was in the first phase in San Francisco, and he had almost total relief from his treatments.  He was in a wheelchair, and in the space of two months was able to run the Bay to Breakers Run.  For those of you who don't know what that is, it is a foot race across the city from the bay to the ocean, or a run of about 7 miles and across five hills.  I know I would be happy with any reduction in pain, but to be able to run and walk again without pain would be Nirvana.  This is my first "Study" and I just figure it is my turn, as many of the friends I have buried in the past, were immersed in studies all the time, and for them, I guess it is time I went to the head of the line. 

OK, now back to relaxing in front of the TV.  I just have so little energy these days, and am so sorry that I don't have the mental fortitude to sit down here each day and communicate with each of you that I have grown to love so much.  I just cannot find the energy anymore.  I guess I shouldn't be too surprised, as my body is obviously in quite a struggle with these poisons.  For those of you who are medication naive, please stay that way as long as you possibly can.

In Love and Pain.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Lisa

  • Member
  • Posts: 1,240
  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
Re: Just in case you were wondering.
« Reply #1 on: July 14, 2006, 01:37:40 PM »
You're not alone Timmy.

Lisa
(who is feeling pretty wrung out today too)

Kisses for you my friend. :-* :-*
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Teresa

  • Member
  • Posts: 1,753
Re: Just in case you were wondering.
« Reply #2 on: July 14, 2006, 02:05:15 PM »
Tim,

Know that I'm sending good thoughts your way and you are in my prayers. You sit, relax, and take care of yourself.

Much love :-*
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Just in case you were wondering.
« Reply #3 on: July 14, 2006, 03:36:41 PM »
Tim,

Good luck with the PN study. I hope you get relief from the pain that you've been dealing with.

Do you know any details of the study?  Are they trying a new drug? Capcaisin patches?

I've had PN for the past ten years. Not disabling, just very uncomfortable and sometimes painful. I tried acupuncture, but I gave up after 8 sessions that gave no relief. I participated in a study for something called Nerve Growth Factor--also no relief (even though I found out I was in the non-placebo arm of the study).

Looking forward to hearing the results from your study participation.

Take care,

Allan

Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Christine

  • Member
  • Posts: 1,069
Re: Just in case you were wondering.
« Reply #4 on: July 14, 2006, 03:58:26 PM »
I hope your feeling better soon. Take good care of yourself! Make sure your fluid intake stays up, try to eat small meals throughout the day, and rest. I have been plagued with belly problems for most of this past year, and they can be so draining.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline heartforyou

  • Member
  • Posts: 1,105
  • I must be a survivor in many ways...
Re: Just in case you were wondering.
« Reply #5 on: July 14, 2006, 04:46:17 PM »
Moffie,


 :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*

Would a nice belgian chocolate be of any help?????


Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Just in case you were wondering.
« Reply #6 on: July 14, 2006, 06:17:02 PM »
Moffie, you are missed when you are not here.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline J.R.E.

  • Member
  • Posts: 7,217
  • Joined Dec-2003 Living positive, since 1985.
Re: Just in case you were wondering.
« Reply #7 on: July 14, 2006, 06:27:17 PM »
Hello Tim,

 I am sorry to hear that things are not well right now. Perhaps the doctor may have more answers or suggestions  for you. I understand the lack of energy, been going through a litlle bit of a tough time myself lately. Let us know what PN info you get from Body Positive/ Study. Mine has been pretty tough to handle lately also.


Hang in there Tim...Thinking of ya---------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline pozniceguy

  • Member
  • Posts: 1,181
  • Niceguy Dallas
Re: Just in case you were wondering.
« Reply #8 on: July 14, 2006, 06:37:14 PM »
Tim   I was wondering...
I know how draining this whole HIV issue can be..both physically and psychologically.. did I mention that my Dr had allowed me the "Tincture of Opium".two or three drops in a glass of water really helps with the  barfs and craps.......   the PN is a constant issue  ,mine has evolved into series of overly sensitive areas where the least little thing feels like a stab with a fork......Dr has set me up for a complete Neuro workup   he thinks long term use of the gabapentin  may have produced more sensitivity...

As with the others I really hope you start feeling a lot better...and if you get into the study there will be a lot of us waiting for your impressions/ results....

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Just in case you were wondering.
« Reply #9 on: July 15, 2006, 07:17:35 AM »
Thanks all of you guys, for caring enough to answer.  I know some of you understand the impact of your answers here, but I just cannot thank you enough.

Today doesn't seem quite so severe, and I am just hoping and trusting that the first cup of "JO" will stay down and I can start a productive and enjoyable day again.  The really bad days are just that, totally bad, and overwhelming.  I am looking forward to the start of the study, and am going to Phoenix on the 28th to see the doctors for the first time.  I am told that this is in fact a Capsaisin study, and that indeed it is a patch mechanism.  I don't know all the details, but you wear the patch for about an hour, and then they take it off, and the treatments are separated by some timeframe, but I don't know.  I do know they make sure you are not allergic to Morphine, as sometimes the body goes into shock from the intense pain from the patches.  As of this point, it is mostly a mystery, but will all be revealed after my first visit.  I do hope and pray that I am not in the control group, as they are only going to get minimal strength, like over the counter strength.  In '96, I tried the strongest prescription strength Capsaisin which helped a bit, but soon broke down and didn't work any more, so I know it will work, but I think the key is dosage strength.  The patch is proposed to work for a full quarter, so you would only have to use it four times a year to get full healing.  Seems like a dream doesn't it Ray?   Opium, sounds like a really good idea.  I might check into that one.  Tee Hee.....

Well guys, I will let you know how the day goes, but I am going to do everything in my power to make this a good day.  ;)

In Love and Thanks for good friends.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Just in case you were wondering.
« Reply #10 on: July 15, 2006, 09:15:31 AM »
Moffie here is a big hug and hopes the study will help you and millions more.  I cannot imagine being sick in the mornings from meds.  I have to give you a huge hug on that one for hanging in there!
Lots of Love
AppleBoy
 :-*
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: Just in case you were wondering.
« Reply #11 on: July 15, 2006, 08:00:09 PM »
Hey Tim....A big hug here too :P
Bless your heart....Your thread is a reminder of how fortunate some of us are...
Another Big Hug :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Quarter Horse

  • Member
  • Posts: 77
Re: Just in case you were wondering.
« Reply #12 on: July 15, 2006, 09:24:06 PM »
Tim,
Just wanted to tell you I LOVE YOU!!!

Brian
In three words I can sum up everything I've learned about life: IT GOES ON.

Robert Frost

Offline bobik

  • Member
  • Posts: 315
    • My worksite
Re: Just in case you were wondering.
« Reply #13 on: July 16, 2006, 09:27:21 AM »
Hey Moffie

I have had PN just a little bit and found it so distracting from everything I did, so I can't even imagine what you are going through. I just hope soooo much that this is going to work for you.
Big, big hug from Holland!

Coen
Coen Honig at Facebook

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Just in case you were wondering.
« Reply #14 on: July 17, 2006, 06:27:43 AM »
Well, this afternoon I go into Tucson to find out the answer to whether or not the AZT is helping or not.  I will be checking in at the end of the day to update my numbers, and we'll see then.

I was able to get some work done on Sunday, and able to get the lawn mowed on Saturday, so once again, it was just a bad day that started all this.  I just wish it would stop.

Thanks you guys for all the wonderful good will thoughts and I want you to all know I really appreciate them.

In Love .
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Dachshund

  • Member
  • Posts: 5,975
Re: Just in case you were wondering.
« Reply #15 on: July 17, 2006, 08:00:48 AM »
Good thoughts to you my man...keep fighting the good fight.

Peace,
Hal :-*

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,913
Re: Just in case you were wondering.
« Reply #16 on: July 17, 2006, 08:05:25 AM »
Good luck with that PN study, Tim. Hoping you get some real relief there.

Thanks for keeping us posted on what's going on.

Cheers to you, 
Andy Velez

Offline joemutt

  • Member
  • Posts: 1,042
Re: Just in case you were wondering.
« Reply #17 on: July 17, 2006, 08:09:19 AM »
Moffie a big cheer for you, your participating in a new study while
not feeling well (euphemism), I dunno if I wd have the resilience,
you're swell :) Big Hug JoeMutt

 


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