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Author Topic: So, I have HIV and i have some questions  (Read 399 times)

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Offline Starfox

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So, I have HIV and i have some questions
« on: Yesterday at 05:58:13 PM »
So, I waited until I got my second bloods back to confirm if my first positive was a reality and it is I have HIV. Two weeks I think i was walking around shell shocked but Im getting over that. I have a positive attitude along with a positive status so Im simply just going to go about my life like this didnt happen and live my life to the fullest, but obviously I need to be on top of my health for life now which is fine because this is me anyway.

Before my health started to deteriorate I was really into fitness and training/gym, looking after myself but the last time i went, over two months ago which in itself was a return to the gym from a previous episode of bad health (all hiv related sure) and me and my ego made me over do it in the gym and a few days later after a small bit of muscle trauma I crashed and had such a bad downturn in health getting violently sick with having weird 'stomach/bacterial like bugs' Ive no idea what was happening but a lack of T cells and immune system responses is like leaving the gates open and it was that that made me get tested...

I have some questions. How soon do you think I should wait before I go back to training? Because i start my meds this week.

I lost allot of weight and muscle mass over the last two years because of this, being realistic can i get this back? Or am I now a salmon swimming up stream?

My doctor also wants me to do this trial along with starting my hiv meds (flashes of scary HIV past trials emerge). The trial, and ill quote from the form in front of me ''A multi-centre, prospective, randomised trial of short course alendronate therapy or placebo combined with vitamin D and calcium to prevent loss of bone mineral density in antiretroviral-naive, HIV-1 infected subjects initiating antiretroviral therapy'' What do you think? I voiced my concerns about these meds but my doctor said they use them already for people with osteoporosis and alike..

Now, ive also noticed hair loss the last few weeks with me, nothing at all obvious but if i run my hand through my hair i will take away a few each time and this is very new to me its like my hair is thinning and falling out lightly. Is this HIV or just stress? there is no male baldness in my family not until you reach late years anyway and im only 31.

I also have slight breathing issues sometimes, and slight pains in both sides of ribs which also feels like weight is being pulled off me from there..   

I guess to finish up what Id really like to know is a few months into these meds can i get back to living a full healthy life? push my body training within reason and enjoy a normal life or will i get easily sick regardless and be limited?

Thanks for any advice
Shane
« Last Edit: Yesterday at 06:00:50 PM by Starfox »

Offline Ptrk3

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Re: So, I have HIV and i have some questions
« Reply #1 on: Yesterday at 06:50:45 PM »
Greetings Starfox:  sorry about your diagnosis, but it's a good thing you found this forum for support and excellent information.

There is no reason to stop fitness training solely because you have the HIV.  If you don't feel up to it yet, that's another story, so start back as soon as you feel well enough.

You don't mention your CD4 count and/or viral load.  You may want to get these numbers, so you can understand precisely where you currently stand, if you don't know them already.

These days, the protocol is to start antiretroviral medication upon diagnosis:  it's good that you are starting meds as soon as practicable and that you are within the medical system.

Your hair loss is not related to HIV.  Male-pattern baldness or hair loss can start at any age, really, and 31 isn't so young that it can't start then.  Maybe, it's stress, as you suggest, but it has nothing directly to do with the HIV.

It is realistic that you will gain weight and muscle mass, once things are clarified with your HIV meds and you are eating better and back in fitness training.

As to the medical trial that the doctor suggests, that's up to you, but it sounds like your doctor has your bests interests in mind.

In summary, once in treatment, you can expect to live a full and healthy life.  As your immune system strengthens you are not any more likely than anyone else to get ill.  You will be fine.  Take your med and live your life as you normally would.
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Starfox

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Re: So, I have HIV and i have some questions
« Reply #2 on: Yesterday at 07:30:07 PM »
Thanks for that info its very helpful. My CD4 count is 683, and I cant remember what the viral load is but I think it was high enough, i was so focused on waiting for my cd4 count i forgot other info and of course its allot to take in. I will be meeting her again Wednesday and will get more info then. Should there be anything I need to ask?

Offline gorka

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Re: So, I have HIV and i have some questions
« Reply #3 on: Yesterday at 08:45:30 PM »
I am in trial for bictegravir vs Triumeq and went undetectable win 4 weeks after starting taking meds.  Not sure what I am taking at this point and my viral load was low to beging with.  But based on my Dr's feedback everyone in this study is doing really well on either drug and follow ups and meds are free

Offline Ptrk3

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Re: So, I have HIV and i have some questions
« Reply #4 on: Yesterday at 11:23:27 PM »
Starfox:  Your CD4 count is very good, so you shouldn't worry about any opportunistic infections.  In fact, you likely won't even need to worry about your CD4 counts at all:  the count is that high.

Now, you'll just need to focus on getting your viral load down to undetectable, from whatever it is now.  That will happen fairly quickly, once you are on anti-retroviral meds.

Once you have an undetectable viral load, your CD4 count will probably rise more, but don't be surprised if your doctor doesn't even order a CD4 count on your next blood test (because your current count is so good).  It's your viral load that matters more now.  Your short term goal is to get  to "undetectable."

You are in good shape.  Take your meds and live a long, healthy, and fitful life!
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Online mecch

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  • red pill? or blue pill?
Re: So, I have HIV and i have some questions
« Reply #5 on: Today at 09:11:34 AM »
Hi starfox. Interesting pseudo.  Welcome to this forum.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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Re: So, I have HIV and i have some questions
« Reply #6 on: Today at 09:27:23 AM »
My CD4 count is 683

I cant remember what the viral load is but I think it was high enough, i was so focused on waiting for my cd4 count i forgot other info and of course its allot to take in.
FYI, focusing on your cd4 count is a huge waste of stress and time. You have a great cd4 count and very soon might never need a cd4 count taken again.

These days once someone has been UD for 2 yrs or more, cd4 labwork is done fewer times a year (1 to 2 times) because the cd4 isn't a very good diagnostic test for someone who is UD. Matter of fact, if you reach >500 for 2 yrs running (hello, that could easily be you in a short amount of time!) , the newest CDC guideline says that you do not even need to ever test your cd4s again as long as you are UD

Quote
After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)


here's a link to some more cd4 info you should know.
6. after your cd4s are above 200, you have passed the danger zone for OIs. The cd4 number then becomes less important while have an undetectable viral load becomes incredibly important.

6. guidelines now reduce the number of cd4 testing to 1-3 times a year if the patient remains UD, while if a person is UD with cd4s >= 500, the cd4 test becomes optional and isn't worth wasting the money/resources. (Undetectable is the holy grail!)

7. the cd4 count is NOT a measure of "healthiness" (qualitative); it's simply a quantitative count at a specific point in time. People with counts in the 300 may never be ill while people above 1500 could be ill. It's just assumed that more cd4s (ie a larger immune system) should be better because their are more cells to fight infections. However, some cd4s are just more efficient (better fighters) so the fewer do more work. The catch to all this is that your immune system is based on your genetics. So blame your parents for your low or high counts.

8. There is no med to increase cd4s. All you can do is suppress the HIV (undetectable) and allow your immune system to recover to whatever it is going to recover to.
leatherman (aka mIkIE)

All the stars are flashing high above the sea
and the party is on fire around you and me
We're gonna burn this disco down before the morning comes
- Pet Shop Boys

chart from 1992-2015
Isentress/Prezcobix

Offline Starfox

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Re: So, I have HIV and i have some questions
« Reply #7 on: Today at 11:19:04 AM »
Hi starfox. Interesting pseudo.  Welcome to this forum.


pseudo?

Offline Ptrk3

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Re: So, I have HIV and i have some questions
« Reply #8 on: Today at 11:27:04 AM »
I presume mecch means pseudonym, as in the name "Starfox."

http://www.dictionary.com/browse/pseudonym

HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Starfox

  • Member
  • Posts: 9
Re: So, I have HIV and i have some questions
« Reply #9 on: Today at 11:34:14 AM »
FYI, focusing on your cd4 count is a huge waste of stress and time. You have a great cd4 count and very soon might never need a cd4 count taken again.

These days once someone has been UD for 2 yrs or more, cd4 labwork is done fewer times a year (1 to 2 times) because the cd4 isn't a very good diagnostic test for someone who is UD. Matter of fact, if you reach >500 for 2 yrs running (hello, that could easily be you in a short amount of time!) , the newest CDC guideline says that you do not even need to ever test your cd4s again as long as you are UD

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)


here's a link to some more cd4 info you should know.

I never realised Viral load is the most important factor and the CD4 is not that important, ill certainly get the count on Wednesday and report back.

Offline Ptrk3

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Re: So, I have HIV and i have some questions
« Reply #10 on: Today at 12:04:04 PM »
CD4's are not important for you because your current count is far above 200.

CD4's (above 200) are not that important for others because once on medication, the viral load will decrease, eventually, to "undetectable."  Once undetectable, the CD4's will most likely increase.

In other words, CD4's aren't as important in terms of a medical "intervention" (i.e., taking anti-retroviral medication) because there's really nothing you can do to improve them except take anti-retroviral medication in order to attain undetectable status.  Become "undetectable" and the CD4's will take care of themselves.

HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Starfox

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Re: So, I have HIV and i have some questions
« Reply #11 on: Today at 01:40:55 PM »
Do most people gain back the lost weight after going on meds? And can i gain muscle mass back too? Id just like to know how to approach training to keep fit and look well

Offline 90szeitgeist

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Re: So, I have HIV and i have some questions
« Reply #12 on: Today at 01:46:52 PM »
I lost a lot of weight with the seroconversion. I've gained it all back. I was muscular before, I am even more muscular now. When I entered the gym again, I eased into it with very low volume, but after a month I was already pushing myself everyday.

In other words - nothing is stopping you from getting a better body.
« Last Edit: Today at 01:56:28 PM by 90szeitgeist »

Offline Starfox

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Re: So, I have HIV and i have some questions
« Reply #13 on: Today at 03:44:56 PM »
I lost a lot of weight with the seroconversion. I've gained it all back. I was muscular before, I am even more muscular now. When I entered the gym again, I eased into it with very low volume, but after a month I was already pushing myself everyday.

In other words - nothing is stopping you from getting a better body.

Thats all I needed to hear :) thanks

Online CaveyUK

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Re: So, I have HIV and i have some questions
« Reply #14 on: Today at 03:49:56 PM »
Bottom line, there is nothing stopping you training right now.

As for weight gain....well weight gain is common when people start ART. Not 100% sure why, but part of it may be a change to the body's metabolism once it doesn't have to spend all it's energy fighting a rampant virus.

My situation is a little different. I was always fairly 'large' (think 'rugby player' large) and ate a LOT. I was always amazed that I didn't pack huge amount of weight on as things stayed static no matter how much I indulged - and I did. Then starting treatment for HIV, I saw pounds being piled on and all my shirts getting too tight. It then dawned on me that if I *hadn't* been eating like a horse pre-diagnosis, I would probably have seen a fairly dramatic weight loss, which would have probably pushed me to test a bit sooner. Now, of course, I wish that I HAD dieted pre-diagnosis and lost some weight to start with, as I look way too obese now. Hopefully gym and diet will sort that out!
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL  - UD (<40), CD4% 22
5th July 2016 - VL - UD (<40) (no CD4 taken)

 


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