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Author Topic: Living abroad - doubts with my doctor  (Read 1218 times)

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Offline markos27

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  • Posts: 3
Living abroad - doubts with my doctor
« on: July 12, 2013, 02:02:47 AM »
This is my first post. I read this forum often, but haven't had anything to contribute as I am just recently HIV+ and haven't started meds yet.

I live in Asia, am in my early 40s and was infected in July 2010 with most likely the HIV-1 subtype E which is prevalent in this part of the world.

To date, I have only done two sets of labs - here they are:

Seroconversion: July 2010
October 2010: CD4 906 (33%), WBC 9800, %lymphocytes 28%, VL 6290
July 2013: CD4 733 (18.8%!), WBC 7800, %lymphocytes 50%, VL (n/a)

I met with my doctor after the second labs. She only seemed interested in the CD4 count and disregarded the CD4%, whereas I've read online that CD4% may be a better indicator of disease progression.

I asked her about the CD4% as it seemed very low. She said it was probably a fluke and said that I shouldn't worry as I had the high CD4 count, and simply recommended that I get a new set of labs in 3 months to check.

For the %lymphocytes, she said 50% was actually "very good", whereas I'd read that this far out of the 25-35% normal range indicates that there may be something wrong.

I also asked her about getting my testosterone levels checked (as recommended by Nelson Vergel) as I've been dealing with very low energy levels and almost no sex drive. She said she knew nothing about testosterone and recommended I see a sports doctor for that.

This doctor was recommended to me by an HIV/AIDS NGO in the country as one of the best doctors in the region. However, my feeling was that she lacked in-depth expertise and perhaps simply has a standard approach to all patients: monitoring CD4 count and starting meds when it hits 500.

She seemed surprised that I would be worried with such a high CD4 count, but the CD4% and %lymphocytes are both troubling me.

I'm writing the POZ community to ask firstly for feedback on my doctor's recommendations given my results, and secondly to look into the possibility of hiring an HIV expert physician online.

Thank you so much for your time!  :D
________________

June 2010 - Seroconversion
October 2010 - CD4: 906 (33%)
July 2013 - CD4: 733 (18.8%)

Offline Anqueetas

  • Member
  • Posts: 116
Re: Living abroad - doubts with my doctor
« Reply #1 on: July 18, 2013, 01:57:18 AM »
I would start met when CD4% hit below 20% because i could head south very fast.
ARS, hospitalized for very high fever-July 2011
diagnosed HIV positive - October 16 2011
CD4 460 19.5% VL 49000 - late October 2011
CD4 625 19.5% VL 50030 - January 2012
CD4 369 19% VL 69000 - March 2012
Start Sustiva+ Truvada - April 17 2012
CD4 524 24.5% VL UD - August 22 2012
Switch to Nevirapine+Truvada
CD4 490 26% VL UD - November 2012
CD4 539 29% VL UD - February 2013
CD4 621 28% VL UD - May 2013

Offline mecch

  • Member
  • Posts: 11,496
  • red pill? or blue pill?
Re: Living abroad - doubts with my doctor
« Reply #2 on: July 18, 2013, 07:25:51 AM »
markos27
Yep, a lot of doctors follow "a standard" one size fits all approach. It is what it is.
You can get somewhat knowledgeable and fight back with information and pointed questions to get medical care that may, in turn, be more individually responsive.  Or may not.
I am curious what you mean "hire" "online" an HIV specialist.  I have sort of heard of online medical consultation. Is this something that people do in your country?  Are you aware of infectious disease doctors who do practice online?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline OneTampa

  • Member
  • Posts: 2,178
  • "Butterflies are free."
Re: Living abroad - doubts with my doctor
« Reply #3 on: July 18, 2013, 10:37:33 AM »
Welcome Markos,

Mecch is correct about individualized situations and care with regard to HIV.

I am now going into my 29th year HIV positive and my CD4 has been recorded only a few times in the 800s with the % never above the low 30s.  I ride mostly in the CD4 high 600s to mid 700s and % at the high 20s.  My doctor notes that appears to be what is somewhat "normal for me".

Wish the best to you.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: Living abroad - doubts with my doctor
« Reply #4 on: July 18, 2013, 12:00:50 PM »

     The CD4 percentage provides another clue to the health of the immune system and  CD4 percentage takes in consideration factors which could cause a false high or false low CD4 count.  I also noticed she hasn't done a viral load with your previous blood draw.  Did she do one this time?  After close to 3 years between labs I would hope so.

  The saving grace in all this is that you're doing another set of labs in 3 months.  Make sure you stay on top of this.

   I also wanted to add, while your Cd4% is on the low side, it's not abnormal for people with HIV to have a percentage lower than 25, especially while not on meds.  In my case things went down pretty fast when my percentage got down to 15%.
« Last Edit: July 18, 2013, 12:06:57 PM by skeebo1969 »
I despise the song Love is in the Air, you should too.

Offline markos27

  • Member
  • Posts: 3
Re: Living abroad - doubts with my doctor
« Reply #5 on: July 19, 2013, 02:31:30 AM »
Thank you all for your replies. When I was diagnosed in 2010, I saw the disease progression for subtype E - on average 5 years when CD4 counts began to drop and 7-8 years to death if untreated. I gave myself three years to put my "HIV-positiveness" on the back burner. Perhaps that wasn't the best of ideas!

I now understand it is a question of trends and not any individual test result. I will stay on top of my labs from now on.

       I also noticed she hasn't done a viral load with your previous blood draw.  Did she do one this time?  After close to 3 years between labs I would hope so.

So far, I have ordered my own tests at an anonymous clinic. I only got the CD4 and CBC test done thinking VL is only important in assessing how effective a particular treatment is. Perhaps I am wrong on this? What is the importance of VL before being on meds?

Thank you all again for your input!


 
________________

June 2010 - Seroconversion
October 2010 - CD4: 906 (33%)
July 2013 - CD4: 733 (18.8%)

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: Living abroad - doubts with my doctor
« Reply #6 on: July 19, 2013, 12:53:42 PM »
So far, I have ordered my own tests at an anonymous clinic. I only got the CD4 and CBC test done thinking VL is only important in assessing how effective a particular treatment is. Perhaps I am wrong on this? What is the importance of VL before being on meds?

Thank you all again for your input!

It measures how much virus you have in your body.    I haphazardly agree that the parameters you're going by are sufficient.

I despise the song Love is in the Air, you should too.

Offline buginme2

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  • Posts: 2,841
Re: Living abroad - doubts with my doctor
« Reply #7 on: July 20, 2013, 03:26:06 AM »


So far, I have ordered my own tests at an anonymous clinic. I only got the CD4 and CBC test done thinking VL is only important in assessing how effective a particular treatment is. Perhaps I am wrong on this? What is the importance of VL before being on meds?

Thank you all again for your input!

Am I reading this wrong or are you deciding which lab test you think you may or may not need?   Shouldn't your doctor be doing this? 

Regardless

It sounds like you need to find better care. 

Offline joemutt

  • Member
  • Posts: 1,041
Re: Living abroad - doubts with my doctor
« Reply #8 on: July 20, 2013, 05:00:08 AM »
Am I reading this wrong or are you deciding which lab test you think you may or may not need?   Shouldn't your doctor be doing this? 

Regardless

It sounds like you need to find better care.

at the Anonymous Clinic Bangkok you can either come with a doctor's list of tests or make your choice (that's the way it is there - they have also packages with a whole battery of tests, xray, EKG). My Dr tells me what to do and I follow her advice. But in the OP's case, apart from taking the VL and other tests at least 6 monthly, I would also get a second opinion on his particular issues.

 


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