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Author Topic: My visit to the doctor  (Read 1006 times)

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Offline arber_B

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My visit to the doctor
« on: November 22, 2019, 08:22:49 pm »
Hello everyone,

I will call myself Arber. I will spare you all the details of my story (for now), but back in August of this year, I had an encounter with someone who claimed to be neg and on prep. A month after in September, I went to PP to get tested. While I was sitting in the office waiting for the HIV test to come back, it did not cross my mind that I will be positive. But, the nurse came and told me that the test was positive. They drew more blood, a week later, it is confirmed and I am positive. I made an appointment with the 360 positive care clinic with UCSF. The doctor was nice and explained all the different classes of drugs and some other info (I was half listening because I was, and still, in shock), and told me that she will prescribe me Biktarvy.

My blood work came back and below is a list of things that are concerning:
1. Cholesterol, total 214, normal <200
2. LDL Cholesterol 143, normal <130
3. Non HDL cholesterol 174, normal <160
4. CD4 456 within normal range, but CD4% 19% which is less than normal (24-64)
5. CD8 1464 which is high (270-918)  and CD8% is 61 which is above normal (14-40)
6.CD4 CD8 ratio is only 0.3 :(
7. Hepatitis A antibody is pos but there is no antigen test!!
8.cytomegalovirus igG is pos

Other test were good.
Now, I have another visit with my doctor next Tuesday and I do not know what to ask or what to be concerned with?
I have so many concerns but I do not know where to start. I read something about HIV drug with only two medications in it. Why was not I prescribed that? How about fat redistribution? and so on.

I would love to hear from you things I should be discussing with her.

Thank you all.

Online Jim Allen

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Re: My visit to the doctor
« Reply #1 on: November 22, 2019, 09:02:36 pm »
Hiya,

Welcome to the forum but sorry to hear about the test result.

Biktarvy, well you are starting on one of the VIP drug combos so to speak, excellent. Have you already started or is this the drug combo you will be starting on?

What was your Viral Load (VL) like?

Quote
1. Cholesterol, total 214, normal <200
2. LDL Cholesterol 143, normal <130
3. Non HDL cholesterol 174, normal <160
4. CD4 456 within normal range, but CD4% 19% which is less than normal (24-64)
5. CD8 1464 which is high (270-918)  and CD8% is 61 which is above normal (14-40)
6.CD4 CD8 ratio is only 0.3 :(
7. Hepatitis A antibody is pos but there is no antigen test!!
8.cytomegalovirus igG is pos

Work with your doctor on this of course, but I've added my two cents.

1,2.3 - Diet, exercise and discuss with your doctor.
4,5,6 - Once you start treatment your VL will start to be suppressed and your immune system will start to "heal" or "recover" for lack of a better phrase but your labs are far better than a lot of us started out with and we are still here  ;)
7 - Generally Hepatitis A is an acute form of hepatitis, meaning that it does not cause long-term (chronic) infection. No need to panic - https://www.hepmag.com/basics/hepatitis-a-basics
8 - Most of the population will test positive regardless of HIV status, no reason to panic, the real issue could happen in untreated HIV with very low counts. By all means, check with your doctor but here is some easy to digest info - https://www.poz.com/basics/hiv-basics/cytomegalovirus-cmv

Quote
I read something about HIV drug with only two medications in it. Why was not I prescribed that?

You're native to HIV treatment, also VL could be a factor, resistance profile or other medical factors. The meds you have been offered are the first-line i.e preferred treatment option.

"Juluca" would be a two-drug version but it's for those with suppressed HIV (less than 50 copies per mL) for at least six months and contains DTG and that's not everyone's cup of tea.

https://www.poz.com/drug_charts/hiv-medications

Quote
How about fat redistribution?

As in lipodystrophy issues, it would be extremely rare with modern meds, really an issue of the older ARV's not current https://www.poz.com/basics/hiv-basics/changes-face-body-lipodystrophy-wasting

Quote
I have so many concerns but I do not know where to start.

Spit it out, we're listening and don't worry about the order of things.  I know it's a lot to digest at first and can feel overwhelming.

Jim

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Offline ZachR

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Re: My visit to the doctor
« Reply #2 on: November 22, 2019, 09:16:37 pm »
Do not panic or stress, because neither will help but harm. Stress itself can cause widespread immune dysfunction among other things, so help your immune system by relaxing.
First, you should know that you are not the first nor last to get HIV. There are thousands and millions of us, a satisfying living proof, aren't we?
Second, you are caught presumably by the end of the first stage (acute infection), at least your labs help guess so, which means your immune system isn't seriously damaged and can reconstitute nearly to its former function after ARV treatment.
Third, CMV (cytomegalovirus) is one of the commonest viral infections in the world, ranging up to 90% of the population and CMV stays dormant in most people and usually wakes up when the immune system is seriously weakened, which yours is far from being. Hep A antibodies could mean you have either been immunised or had an episode of Hep A infection in the past, yet it doesn't cause a chronic infection unlike Hep C and B.

Jim has already extensively covered everything, so you have a ton to read.

References:
https://onlinelibrary.wiley.com/doi/abs/10.1002/rmv.2034
« Last Edit: November 22, 2019, 09:22:57 pm by ZachR »
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 arber_B

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Re: My visit to the doctor
« Reply #3 on: November 22, 2019, 09:20:50 pm »
Thank you for your responses. I forgot to mention VL baseline was 245.

Offline ZachR

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  • Let's look at the stars again
Re: My visit to the doctor
« Reply #4 on: November 22, 2019, 09:25:51 pm »
Are you sure it was the viral load before treatment? I am asking because it is extraordinarily low and you might have protective host factors to keep the virus so low or have a replication-defective virus. Whatever I just said are all good things, it's only my curiosity.
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 arber_B

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Re: My visit to the doctor
« Reply #5 on: November 22, 2019, 09:31:33 pm »
Are you sure it was the viral load before treatment? I am asking because it is extraordinarily low and you might have protective host factors to keep the virus so low or have a replication-defective virus. Whatever I just said are all good things, it's only my curiosity.

How do I know what are the protective host factors? Is there a replication-defective virus? What does that mean?

Yes. It was before the treatment. I assumed this is normal because It was so close after infection (6-7 weeks).

Online Jim Allen

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Re: My visit to the doctor
« Reply #6 on: November 22, 2019, 09:35:09 pm »
Relax, VL of 245k is easily correct, seen people with less than 1K up to multiple millions, in itself not really an indicator of any protective factors. VL will vary depending on the host, age, health, length of infection, sub-type etc etc

It does not really matter, and 245K or multiple million, once you start treatment the VL will drop and once you have the virus suppressed it will no longer be doing uncontrolled damage to you, that's what matters.

Avg. as highlevel exsample only.





« Last Edit: November 22, 2019, 09:39:10 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 ZachR

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  • Let's look at the stars again
Re: My visit to the doctor
« Reply #7 on: November 22, 2019, 09:37:52 pm »
Replication-defective strains have genes missing for some of the viral proteins, which make the virus very weak and ineffective.
Protective host factors are usually variants of genes that some people carry, which happent to restrict HIV.

These are all things that make having HIV a much easier task, because for certain reasons your immune system happens to be very effective in handling the virus.

Of course, we do not know if you have them, and you don't need to know either, because, treatment is still warranted. If there is something interesting your doctor will mention it.

To Jim: He said 245, or does he mean 245k?
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 arber_B

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Re: My visit to the doctor
« Reply #8 on: November 22, 2019, 09:40:10 pm »
Relax, VL of 245k is easily correct, seen people with less than 1K up to multiple millions, in itself not really an indicator of any protective factors. VL will vary depending on the host, age, health, length of infection, sub-type etc etc

It does not really matter, and 245K or multiple million, once you start treatment the VL will drop and once you have the virus suppressed it will no longer be doing uncontrolled damage to you, that's what matters.

Avg. as highlevel exsample only.




My VL was not 245K, it was 245.

Online Jim Allen

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Re: My visit to the doctor
« Reply #9 on: November 22, 2019, 09:45:22 pm »
245 - Okay, It could be that you have a very low VL count at the moment, so early on if so multiple possible reasons ranging from early infection, could be lab error or some factors in part suppressing the VL. - Aka - the 1% non-progressor, although the term is misleading.

Whatever the case, same applies, work with the doc, get onto treatment and get it fully suppressed, don't look back.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 arber_B

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Re: My visit to the doctor
« Reply #10 on: November 22, 2019, 09:47:31 pm »
245 - Okay, It could be that you have a very low VL count at the moment, so early on if so multiple possible reasons ranging from early infection, could be lab error or some factors in part suppressing the VL. - Aka - the 1% non-progressor, although the term is misleading.

Whatever the case, same applies, work with the doc, get onto treatment and get it fully suppressed, don't look back.

Yes, sir. I am taking my Biktarvy at the same time every day.
Also, kind sir, you have a cute smile.

Offline daveR

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Re: My visit to the doctor
« Reply #11 on: November 22, 2019, 09:56:16 pm »
Don't over think it or over complicate it. Take your pills as prescribed and then work on that cholesterol. Diet Change and exercise. Watch your fasting glucose also. There are many things to keep an eye which we often loose track of by over focussing on the HIV.
No point avoiding AIDS just to die prematurely of an avoidable heart attack.

Modern day meds work very well.

Dave

Online Jim Allen

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Re: My visit to the doctor
« Reply #12 on: November 22, 2019, 10:05:00 pm »
Also, kind sir, you have a cute smile.

 ;D LOL - Thanks, that's a first.



Look take a deep breath, you are going to be okay.

Keep us posted, ask any questions that pop into your mind.

My tip regarding doctor visits, write down questions you want to ask your doctor. I think it can be a bit overwhelming at first and people often forget the questions they had during visits, writing them down will help ensure you get to ask whatever you want to ask the Doc.

Jim


HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 arber_B

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Re: My visit to the doctor
« Reply #13 on: November 22, 2019, 10:09:29 pm »
It is overwhelming. I am doing better mentally at this point. The first week or two, I absolutely would go to work and come back not remembering how did the day go. Then, I would sleep or hide under the blanket until the next day.
Now, I am back to normal at work, I started going back to the gym, and I want to just move on.

Offline JosephP

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Re: My visit to the doctor
« Reply #14 on: November 22, 2019, 10:21:54 pm »
It is overwhelming. I am doing better mentally at this point. The first week or two, I absolutely would go to work and come back not remembering how did the day go. Then, I would sleep or hide under the blanket until the next day.
Now, I am back to normal at work, I started going back to the gym, and I want to just move on.

And that's what you should concentrate on! work, life, gym and the meds... It will get easier. It has happened to all of us... The initial shock is brutal, but time, and a good doctor, heal.. Biktarvy is the Cadillac of the new ARVs. I have been on it for over a year now and no problem so far. I was on Stribild and Genvoya (Biktarvy's brothers) and these two meds needed to be taken with food which was a drag.. Biktarvy doesn't and, that is liberating! Keep it up... Keep going...  Keep busy... Keep those meds in sight!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline arber_B

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Re: My visit to the doctor
« Reply #15 on: November 22, 2019, 10:27:34 pm »
I was on Stribild and Genvoya (Biktarvy's brothers) and these two meds needed to be taken with food which was a drag.. Biktarvy doesn't and, that is liberating! Keep it up... Keep going...  Keep busy... Keep those meds in sight!

I do like that I do not have to take it with food. I do not eat breakfast and I take it in the morning.
thank you for your reply.

Offline Expat1

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Re: My visit to the doctor
« Reply #16 on: November 23, 2019, 03:16:28 pm »

My VL was not 245K, it was 245.
Dont worry about a single reading.  Once one on one of my lab tests the tech had a decimal point in the wrong place.  So it was off by a factor of 10x or 1log.  The doctor freaked, and I pointed out to the doctor that it had to be a lab error or I would be dead. 

In either case it confirms the HIV  positive ELISA tests.  And after the START trials, you would begin ARV meds in either case. 

Offline arber_B

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Re: My visit to the doctor
« Reply #17 on: November 26, 2019, 10:25:58 pm »
so, I went to the doctor today and I did not ask most of my questions. She keeps telling me that all the "what I think is" side effects I bring up are coming from stress and not from the meds. Then, I go to draw blood and the results are below:
The first number is in Oct before the meds, the second is after roughly 7 weeks of Biktarvy, (the normal range)

Albumin, Serum / Plasma        4.5    4.8 g/dL    (3.5-4.8)
Alanine transaminase             29        166 U/L  (12-60)
Aspartate transaminase         26       68 U/L  (17-42)
Creatinine                          1.00    1.11 mg/dL  (0.6-1.24)
Anion Gap                          9   13    (4-14)

I am very concerned about the Alanine transaminase and the Aspartate transaminase. These are the liver enzymes and they are very alleviated. While driving back home, the doctor calls and asks me if I started drinking or if I had sex or something since the last visit. The answer to all of these are No. So. the only new thing is Biktarvy. Does that mean it is damaging my liver? What should I do?
She wanted another blood test in a week.


Online Jim Allen

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Re: My visit to the doctor
« Reply #18 on: November 27, 2019, 01:57:03 am »
Hiya,

What were your liver enzymes results the time before this?

Quote
What should I do?
Nothing and no need to stress over a single lab result, just retest in week as the doctor has requested and see what the story is at that time.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 arber_B

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Re: My visit to the doctor
« Reply #19 on: November 27, 2019, 11:15:15 am »
Hiya,

What were your liver enzymes results the time before this?


ALT was 29 and went up to 166
AST was 26 and went up to 68


Online Jim Allen

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Re: My visit to the doctor
« Reply #20 on: November 27, 2019, 11:34:03 am »
Hiya,

Okay well, you just started treatment and it's a single lab result so just test in a weeks time as the doctor has requested and see what the story is at that time.

Best, Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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

 


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