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Author Topic: How should I feel?  (Read 4283 times)

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Offline LordBerners

  • Member
  • Posts: 415
How should I feel?
« on: October 30, 2007, 12:44:50 PM »
I recently introduced myself to this forum - tested positive around 2 months ago, believe I've been positive around two years, and got initial numbers of 300 CD4 and 755,000 VL. 

I was discouraged by those numbers, and just wanted to mention my general feelings and symptoms(?) to look for feedback.  I'm surprised my numbers are kind of bad as I feel generally very good.. or I should say normal.  I have never gotten any 'night sweats', fevers, or anything of that nature.. other than the severe week to 10 day illness of initial infection.  I also never seem to have any gastrointestinal problems..

I feel that I do catch colds more easily and take a little longer to get rid of them - had a deep grumbly, productive cough for months this rainy season.  What I've noted most, though, is skin issues.  I have had herpes for maybe a decade, but it hardly ever recurred until I became positive - now it does every 2-3 months.  Still goes away reasonably quickly, but I hate to think what it would be like if immunity dropped further. 

Around the time I got infected, I had a bought of some kind of bacterial infection around the groin area, which I now believe could have been 'staff infection'.  It got to the point of what were essentially open wounds, but then quickly healed.  However this has returned very occasionally in the form of small boils centered on pubic hair follicles.. I have had to resort to putting a few drops of hydrogen peroxide on those to get them to heal (worked extremely well).  Lastly I have had some minor fungal growth in the crotch - at the the tops of thighs.  This is the famous 'crotch rot' that every foreigner gets in Southeast Asia, particularly in the rainy season, but I feel it keeps coming back and won't go away fully and wonder if this is another possible symptom.  Oh and I just remembered one more - gum inflammations.  I get swollen gums far more often than I remember getting in past years.

Sorry about the laundry list of not very important things, I just wanted to see if anyone has shared these types of experiences.
Please, just call me Berners.. or Baron.

Offline bear60

  • Member
  • Posts: 4,104
Re: How should I feel?
« Reply #1 on: October 30, 2007, 01:23:59 PM »
I highly recommend the use of a hair dryer for your private areas.  After bathing, towel dry and then use a hair dryer, it prevents most of those rashes.  Then powder. And you are good to go.
Poz Bear Type in Philadelphia

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: How should I feel?
« Reply #2 on: October 30, 2007, 02:27:34 PM »
Hi:

The evolution of the virus is quite different from person to person. I felt exactly the same as you and was discovered a little bit later in terms of CD4. But my VL was very low.

I do not know when did I  get infected though.

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Iggy

  • Member
  • Posts: 2,435
Re: How should I feel?
« Reply #3 on: October 30, 2007, 02:58:45 PM »
I'm surprised my numbers are kind of bad as I feel generally very good.. or I should say normal. 

That's the funny thing about this virus and why you will hear over and over that though you should use your numbers as a guide, you can't predict your health on them. 

Are you on any meds?
« Last Edit: October 30, 2007, 03:33:40 PM by Iggy »

Offline BirdBear718

  • Member
  • Posts: 105
Re: How should I feel?
« Reply #4 on: October 30, 2007, 07:50:36 PM »
Do not apologize for the laundry list.  The issues are important to you and that is what matters.

Make your doctor your best friend.  Make sure they listen to you when you describe what is bothering you.  Repeat, repeat, repeat if you do not think they are hearing you. 

I like Bear's suggestion of using a hair dryer...

Offline LordBerners

  • Member
  • Posts: 415
Re: How should I feel?
« Reply #5 on: October 31, 2007, 01:53:41 AM »
Are you on any meds?

No, I just found out a couple of months ago, and just got my first blood work done a few weeks ago.  The doctor ('my doctor'?  I only visited her once) told me over the phone she wants to put me on medication immediately. 

My problem is that I have no insurance so I may or may not be able to afford treatment.  Luckily there is at least a chance of a cheap (under $200/month?) drug regimen here in Thailand due to the authorities very brave and surprising disregarding of patent monopoly.
Please, just call me Berners.. or Baron.

Offline StrongGuy

  • Member
  • Posts: 492
Re: How should I feel?
« Reply #6 on: October 31, 2007, 02:01:36 AM »
I'd aree with birdbear, talk to your doctor. I was having annoying little infection craps that correlated as my CD4s decreased. Gums getting more tender than usual and seborheic dermatitis . When I went on meds both issues improved dramatically. You have to get a good read from your doctor who knows your unique history and decide what the best plan of action is.

Just finished typing the above and saw your response. I wish you the best getting access to the treatments and I'm glad they busted the patent. It's criminal how we have such effective treatments and people have to struggle to get access. Good luck bud...
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline LordBerners

  • Member
  • Posts: 415
Some good and bad News
« Reply #7 on: November 03, 2007, 05:46:18 PM »
I just had a second visit with the doctor, and she informed me that my 'percentage' is 14.6%, which she said was a worse sign than the 300 cells...

I really feel rushed by this doctor to start treatment, though she does claim it is warranted by my poor numbers. 

So get this - she said the medicines would probably be 30,000 baht per month, to which I responded 'that's nearly my entire income!'.  She then researched it in the hospital's drug pricelist, and sure enough the three medications she recommended would come to just under 5,000 baht/month (about $150).  Very liveable.  However CD4 and VL testing was about $225 at this hospital, compared to a price quote I got at the Red Cross for around $75.  So I decided to hold off on treatment to shop around.  Really didn't like that doctor anyway.

I almost forgot - I wanted to know if this is normal.  She priced the three drugs in her computer, but refused to tell me which drugs she was considering!  She claimed it was because she didn't want me to just go get them somewhere and take them unsupervised, but I explained that I just wanted to compare costs.  She refused!  It just seemed strange.  I wish I knew what those drugs were.. She said they weren't 'the cheapest ones', but ones she recommended because my viral load was so bad.
Please, just call me Berners.. or Baron.

Offline MitchMiller

  • Member
  • Posts: 479
Re: How should I feel?
« Reply #8 on: November 05, 2007, 11:07:31 PM »
Those "boils" you describe sound like herpes.  You mention you have herpes.  I've had it for 25 years and even before I became HIV+, it had migrated to my "backside"... basically right where I sit.  I used to only get it on my penis, then I stopped getting it there and would get it about once/year on my butt.  About three years after becoming HIV+, I've also started getting it about every 6 - 8 weeks, sometimes on the penis, sometimes on the butt (in the same spot every time).  One thing is that the ARVs seem to shorten the outbreak.  This has been observed in a study and I've also noticed it.
The open sore is always at risk of infection.  Like you, I find using hydrogen peroxide on it helps keep away infection so when the outbreak runs through its cycle, the sore will heal quickly.  I use a medicine dropper and treat the area twice/day.  Typically it will bubble if it's not yet healed.
I have other friends that have herpes and also get sores like you describe, on the groin area.

Offline dgr20002

  • Member
  • Posts: 288
Re: How should I feel?
« Reply #9 on: November 05, 2007, 11:14:33 PM »
You are the second person in two days that i have seen mention Thailand for drugs. The first one said there were generic drugs there. I'll see if I can find out more from him as I am curious as to what they are selling there so cheaply.

David

Offline komnaes

  • Member
  • Posts: 1,893
Re: How should I feel?
« Reply #10 on: November 05, 2007, 11:38:20 PM »
So get this - she said the medicines would probably be 30,000 baht per month, to which I responded 'that's nearly my entire income!'.  She then researched it in the hospital's drug pricelist, and sure enough the three medications she recommended would come to just under 5,000 baht/month (about $150).  Very liveable.  However CD4 and VL testing was about $225 at this hospital, compared to a price quote I got at the Red Cross for around $75.  So I decided to hold off on treatment to shop around.  Really didn't like that doctor anyway.

Hey Lord, are you getting your consultations from a private hospital? I do recommend that you get in touch with the NGOs, which contacts I have posted in another thread of yours. It doesn't sound strange at least to me that your doctor could just "adjust" your meds according to what you could afford. Did she discuss side effects, etc? And as a general rule you should really try to find a doctor that you're comfortable with, and you never know whether you can find him/her in a government hospital, which as far as I know, except for tests and meds, the consultations are free.

You are the second person in two days that i have seen mention Thailand for drugs. The first one said there were generic drugs there. I'll see if I can find out more from him as I am curious as to what they are selling there so cheaply.

Thailand is able to manufacture and import a number of generic drugs because of a legislation that declares HIV/AIDS as a medical emergency that justifies the invalidation of a number of patents. So that's why some drugs there are cheap. The big pharmas are of course super unhappy about it but somehow they haven't made a big deal out of it as Thailand has been fighting HIV for much longer than most countries and is usually hauled as a "model" in providing education and treatments.

Other than serving local Thais and expats, Bangkok is now a center for treatments for people from all over the world, mostly from Asian countries that are treating their HIV patients very cruelly (Singapore, etc) or because of stigma and lack of privacy protection (Malaysia, etc). Lord mentioned that the costs are still high for local Thais and some expats, but still consider affordable when you compare the prices one needs to pay in say Singapore.

Shaun
« Last Edit: November 05, 2007, 11:41:45 PM by komnaes »
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline next2u

  • Member
  • Posts: 1,762
Re: How should I feel?
« Reply #11 on: November 05, 2007, 11:41:34 PM »
part of my seroconversion was extremely inflammed gums. my dentist couldn't figure it out. eating was unbearable for 2 days, then it subsided.

the doc not telling you what meds to get sounds fishy. but it thailand, and im not sure of the policies there. where i come from, docs want to help and understand that you can't always afford things. okay, not all of the docs, but the good ones offer more help and are more open. your doc sounds like a business women in scrubs. are there other hiv folks or a support group you can reach out to in your area? maybe they can offer sound advice for your situation. take care and keep us informed.
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline joemutt

  • Member
  • Posts: 1,042
Re: How should I feel?
« Reply #12 on: November 06, 2007, 01:12:05 AM »
I take meds in Thailand as well,
just got back from the hospital to get them;
Lamivudine 150 mg (lamivir-generic) 1560 thb app 46.50 usd  @ 60 tabs
Nevirapine 200 mg (neravir-generic) 2340 thb app 69.6 usd @ 60 tabs
Viread 300 mg (brand Gilead) 1950 thb app 58 usd @ 30 tabs
this from a private hospital, you could get them cheaper from a government hospital.
(My insurance still pays me back 75 % of these amounts)
My doctor always gives me any information I want, he's very sweet., I've been with him since 1997,
but in general doctors here can be paternalistic/patronizing.
(Glad I never had the 'crotch rot' you mention, eew  :-[ ).
« Last Edit: November 06, 2007, 01:20:23 AM by joemutt »

Offline komnaes

  • Member
  • Posts: 1,893
Re: How should I feel?
« Reply #13 on: November 06, 2007, 01:42:08 AM »
Hey Joe,

I was hoping you would reply. You know any NGOs in Thailand that can give counseling and help for expats?

Thanks, Shaun

(who actually has a few friends in Asia are also trying to get help)
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline joemutt

  • Member
  • Posts: 1,042
Re: How should I feel?
« Reply #14 on: November 06, 2007, 01:56:14 AM »
Medecins sans Frontieres is here, I'm not sure they'll help expats,
but then again I don't know anything about procurement of generics for other countries
I once asked my dr about , he sd better come to Thailand, have blood test
then meds, (maybe a possibility with the low cost carriers), I usually buy my meds for 3 months but I'm sure they can give you for longer. Be Well.

Offline LordBerners

  • Member
  • Posts: 415
Re: How should I feel?
« Reply #15 on: November 06, 2007, 12:44:41 PM »
Let me thank all of you for your helpful comments.  This site is wonderful, as are all of you..

Those "boils" you describe sound like herpes.

No, I have the herpes lesions and these are very different from those.  Those occur on the penis, but these things I describe as 'boils' are much more 'puss-y' bacterial infections in the pubic hair region starting in the hair follicles.  Not so unusual I guess.

Hey Lord, are you getting your consultations from a private hospital? I do recommend that you get in touch with the NGOs, which contacts I have posted in another thread of yours. It doesn't sound strange at least to me that your doctor could just "adjust" your meds according to what you could afford. Did she discuss side effects, etc?

No, my doctor did not discuss side effects at all.  In fairness I sort of cut her short by saying I wanted to explore cheaper treatment options.  And yes, it is a private hospital.  I'm trying an NGO (Hiv-Nat) next week, but I think I might need to jump into treatment ASAP, so if the NGO doesn't work out I'll probably go back to the private hospital, get started, and then seek to transfer treatment to a cheaper hospital in a month or two.

I take meds in Thailand as well,
just got back from the hospital to get them;
Lamivudine 150 mg (lamivir-generic) 1560 thb app 46.50 usd  @ 60 tabs
Nevirapine 200 mg (neravir-generic) 2340 thb app 69.6 usd @ 60 tabs
Viread 300 mg (brand Gilead) 1950 thb app 58 usd @ 30 tabs
this from a private hospital, you could get them cheaper from a government hospital.
(My insurance still pays me back 75 % of these amounts)
My doctor always gives me any information I want, he's very sweet., I've been with him since 1997,
but in general doctors here can be paternalistic/patronizing.
(Glad I never had the 'crotch rot' you mention, eew  :-[ ).

Yeah the crotch rot is essentially just ringworm.. its not all that bad.  Thanks for the rundown of your meds.. for all I know those were the ones she was proposing.  Her total was around 4,800 baht.. yours are about 1,000 more.  Alas in my case there is no insurance, and I'm living on the typical 30,000 or so a month teacher's salary.  Let me know if you can recommend any particular hospitals.
Please, just call me Berners.. or Baron.

 


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