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Author Topic: RahulIndia - Introduction thread  (Read 1197 times)

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Offline RahulIndia

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RahulIndia - Introduction thread
« on: October 20, 2019, 11:56:15 am »
Suddenly feeling constant FATIGUE + HEADACHEíS

Dear All,

I have been reading many articles/posts on POZ Forum for over an year and it has helped me maintain my sanity, as I see EVERYONE SUPPORTING EACH-OTHER !!

Thatís really incredible, and I give million thanks to those who provide constant support, from the bottom of my heart.

MY STORY:- I live in a very small town in India, & I was diagnosed in June 2018, and I was immediately put on Government subscribed FREE- ART Medication: (Tenofovir Disoproxil, Fumarate, Lamivudine, & Efavirenz (300/300/600 mg)).

(6th December : CD4= 609; VL = NA; 7th June Ė 2019, CD4= 788, VL = 24 copies)

BACKGROUND :  In June Ė 2018 I went for HIV test, as I was constantly feeling fatigued and had headaches through out the day, and to my dismay, I found out that I was positive, and I do recollect one of the encounters I had in 2017, when the condom had broken, and I may have definitely contacted it back then. (Irrespective of this event I really cant pin-point any other occasion, but it doesnít matter now)

SUMMARY: Since June 2018, I have been taking my ART meds, without fail (once or twice I forgot, so I took it in the morning), and I was doing just fine, and could perform my daily routine, but suddenly, one day (Start of October - 2019), I started having following symptoms:-

SYMPTOMS: Feeling light headed all day long (in spite of having enough sleep, as well as afternoon nap), blurry vision sometimes; constant headaches which goes down for, say 20 min. to an hour only when I eat something, but then again headache starts, occasional HOT FLASHES with sweating, cant concentrate on anything !!!! I HAVE NEVER MISSED MY ART-MEDS !!!!

QUESTION: For last 15 months ever since I started ART-meds, I was feeling okay, but then why suddenly this is happening? I drink only on weekends, and only moderately. I donít smoke. Have I turned ANEMIC? Have I developed ART-drug resistance? Or as I have read, that those who get on ART, have possibility of developing Type-2 diabetes? Do my symptoms sound like Kidney or Liver related? I donít have fever/Flu/Upset Stomach, then what could be the problem?

FINALLY: In India, I live in a very small town, and get Free-ART from the Government, so donít have too many options to switch on to, like the western world. I take tuitions, and cant really afford to buy the current western meds. Also in such a small town, there is hardly any support system to get in touch with, and even at the Government hospital, there are hardly Doctors present to ask them about my symptoms or for any tests !!!
 
In a SMALL TOWN IN INDIA, I am all lost, with NO HELP.

Is it just the SIDE-EFFECTS of the ART Ė meds and I will just have to live with it, all my life? Can you please chime in your 2 cents, out of your years of experience, about what could be wrong? That would be awesome my friend. God Bless you all.

Rahul.

P.S. My CD4 count and VL is scheduled for next month, as with the free ART meds from the Indian Govt. they do these tests only after 6 months and not in between !!!


Offline Jim Allen

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Re: RahulIndia - Introduction thread
« Reply #1 on: October 20, 2019, 03:33:37 pm »
Hi Rahul,

Welcome to the forum.

Glad to hear you are on treatment and your labs are looking good, sorry to hear more recently after 15 months you are feeling unwell though.

Quote
Feeling light headed all day long (in spite of having enough sleep, as well as afternoon nap), blurry vision sometimes; constant headaches which goes down for, say 20 min. to an hour only when I eat something, but then again headache starts, occasional HOT FLASHES with sweating, cant concentrate on anything

Could be just about anything, a combination of things or nothing at all. I mean other than saying drink plenty of fluids the only thing we can say is to see your Doctor so they can investigate and treat whatever is making you sick. I hope you feel better soon.

Quote
P.S. My CD4 count and VL is scheduled for next month, as with the free ART meds from the Indian Govt. they do these tests only after 6 months and not in between !!!

Good as more frequently would be a waste of money in most cases. Your CD4's are over 200 great and your VL is suppressed, more frequent is not needed

Best, Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
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Offline leatherman

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Re: RahulIndia - Introduction thread
« Reply #2 on: October 20, 2019, 07:01:52 pm »
Hi Rahul,
with this forum software you to make at least 3 posts before you can direct message anyone. So I passed your message over to Jim so he could help you get your question posted.

Good as more frequently would be a waste of money in most cases. Your CD4's are over 200 great and your VL is suppressed, more frequent is not needed
Jim's really correct on this. Here in America the guidelines are to do a viral load test 1-2 times a year and if you have a cd4 count >=500 for 2 years then you don't have to do any cd4 tests at all. That just shows how well the meds work if you stay adherent, and how little cd4 counts mean if they are >200.

Quote
For last 15 months ever since I started ART-meds, I was feeling okay, but then why suddenly this is happening?
Quote
Or as I have read, that those who get on ART, have possibility of developing Type-2 diabetes? Do my symptoms sound like Kidney or Liver related?
always remember, not everything wrong with you is related to HIV - especially if your cd4 count is in a good range and you're adherent to your meds. You should talk to a doctor about these symptoms and look for what's causing them.

Quote
Have I developed ART-drug resistance?
to develop resistance you have to still be taking your meds but taking them haphazardly - like if you take meds for a few days and then skip a few days, and then take meds a few days and then skip a few days. To develop resistance the level of HIV meds has to dip just low enough for HIV to learn how to evade that med. If you stay at least 95% adherent by taking your meds or 0% adherent and never take any meds, HIV can't become resistance. If however your adherence to the meds is not good, like 80% 70% or 50%, then HIV might become resistance to the meds you're taking now.  Resistance does NOT happen if you take your meds daily as prescribed. So, as long as you're taking your meds daily, you can stop worrying about resistance as a problem.
leatherman (aka mIkIE)

Offline RahulIndia

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Re: RahulIndia - Introduction thread
« Reply #3 on: October 21, 2019, 02:39:29 am »
Dear Meikie (leatherman) and Jim Allen,

Thank you so much for your answers, and your support. I am sure you both have done a great job in building a POSITIVE KARMA, for yourself, by your help & support, to the people from our community, all over the world.

Thanks a million  : )

Also, I 100% agree, that its only the Doctor who can tell whats happening, and as I said that in a SMALL TOWN like mine, there are not enough specialised Doctors, let alone have Doctors who deal with HIV or ART side effects.

BOTTOM LINE: I am still looking for someone who is experiencing the same condition, or must have had it in the past, so they can share their story, with DO'S & DONT'S, that I can follow, to have a better life.

EXAMPLE: Since 2017, I havent had any physical encounters, to contact any STI's or STD's, so it could simply be "Depression" or "Anxiety"? But I am not sure. Please help, if you dealt with similar issues in the past. Thanks in Advance.

Offline Jim Allen

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Re: RahulIndia - Introduction thread
« Reply #4 on: October 21, 2019, 03:56:47 am »
Hiya,

Now someone might chime in with their experiences, to be honest, I've had illness during my life that included your symptoms, but to be a little blunt, someone could experience the exact same or similar symptoms for totally different reasons, so it might feel reassuring to ask about similar experiences but ultimately it's not going to help you get better or worse yet could lead you down the wrong path

What you are experiencing could be just about anything and unrelated to HIV or treatment.

Quote
as I said that in a SMALL TOWN like mine, there are not enough specialised Doctors,

Quote
DO'S & DONT'S, that I can follow

You don't need a specialised doctor to start with unless the local one can't help you but do start with just seeing the local doctor. This is what I do when I get sick I don't rush off to see the limited few specialised doctors my nation has just because I'm living with HIV, I start with the local GP just like the average person does regardless of HIV status

Hope you feel better soon.

Quote
Since 2017, I havent had any physical encounters, to contact any STI's or STD's, so it could simply be "Depression" or "Anxiety"?

There are far more ways than just sex to acquire, develop health issues or infections

Best, Jim
« Last Edit: October 21, 2019, 04:25:43 am by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Mojito

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Re: RahulIndia - Introduction thread
« Reply #5 on: November 10, 2019, 12:04:14 am »
Hi Rahul

 I'm also from India and on same medicine that you are having. You can PM me if you need support.

Offline ZachR

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Re: RahulIndia - Introduction thread
« Reply #6 on: November 10, 2019, 04:47:44 am »
Hey Rhaul and welcome!

I'm truly sorry to hear that you are having these issues and is difficult to find a doctor. As many have noted above, it could be many things. But, in my humble opinion, resistence is the last thing it would be, as your symptoms tend to more related to metabolism and hormones. The only few things to suggest now before you see a doctor is:

1. Take your blood pressure, go to the nearest pharmacy and ask them to take it a few days in a row. The BP fluctuations very often can explain such things.
2. Drink fluids regularly, try to aim for pure water instead of beverages.
3. Eat healthy, eat the rainbow.
4. Tell you doctor about all of this at your next appointment.

Hope things get resolved very quickly, by the way, sometimes anxiety and depression's first symptoms are too very similar to yours, and I'm sure your doctor would check your thyroid too.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline virgo313

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Re: RahulIndia - Introduction thread
« Reply #7 on: November 10, 2019, 09:32:21 am »
Is it just the SIDE-EFFECTS of the ART – meds and I will just have to live with it, all my life? Can you please chime in your 2 cents, out of your years of experience, about what could be wrong? That would be awesome my friend. God Bless you all.

Hi Rahul,
I am also in a similar option like you & relay on free government medicare. like other have advise, there is "other ways" to seek medical service like heading to the normal out-patiant or emergency section of a hospital. Do go through that avenue to see advise. i am sure they can refer to the HIV DR for guideline if they feel it related to your meds..

Do you need to take (Tenofovir Disoproxil, Fumarate, Lamivudine, & Efavirenz (300/300/600 mg) for rest of your life? the answer is No. There is other meds guideline that a country keep to treat people like us. having said this, other meds may not be "the latest", but i am quite sure they do not just offer 1 combo.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3284090/  (this might be the latest updates)

http://naco.gov.in/sites/default/files/NACO%20-%20National%20Technical%20Guidelines%20on%20ART_October%202018%20%281%29.pdf

Just to assure that if there is a need to change meds, there is other meds available. Thanks
« Last Edit: November 10, 2019, 09:44:40 am by virgo313 »
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

 


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