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Author Topic: My journal here  (Read 13860 times)

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Offline Kirat

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  • Posts: 51
My journal here
« on: February 15, 2024, 10:25:06 pm »
Just continuing my journal.
So, hi guys. I'm still struggling with all those symptoms that I mentioned previously (blurry vision, extreme fatigue, bloating, constipation, weakness, dizziness(heavy headedness), brainfog, muscle stiffness)...
A few weeks ago I was at my step-dad's house and I started taking magnesium and I started to feel better. The problem is that I'm still taking it and my symptoms came back. Then I realized that when I was there, I was eating a lot of sauerkraut. So, I wonder if this has something to do with my intestine. From what people said here, HIV loves the intestinal tract. So, I'm urging myself to produce fermented foods like kefir, kombucha, pickles, sauerkraut, different yogurts and etc. Hopefully I'll have a big improvement doing it. But it is so weird that I feel the way I feel. Everyone here seems to feel normal.
I also realize that I get some skin rashes, specially on my ankles and they itch.
I'll keep updating here, if that's possible. Let's never give up!
« Last Edit: February 15, 2024, 10:27:41 pm by Kirat »
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Tonny2

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  • Posts: 3,168
Re: My journal here
« Reply #1 on: February 16, 2024, 12:30:06 am »



          ojo.          Hello there!… i’m sorry you are still having problems and I wonder how was your life before your diagnosis…. As you may know., we are not doctors, we only share our experiences, and I think that you should talk to DOCTOR and Tri to find out what’s going on with you either physically or mentally. I feel for you, but I don’t know what else to tell you. I think that we had discussed with you all our experiences and Sims that you are different to all of us. I know that everybody’s different but, having been reading members experiences, I think since 2006, we haven’t been able to help you…abracos


Offline Kirat

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  • Posts: 51
Re: My journal here
« Reply #2 on: February 17, 2024, 01:45:09 am »


          ojo.          Hello there!… i’m sorry you are still having problems and I wonder how was your life before your diagnosis…. As you may know., we are not doctors, we only share our experiences, and I think that you should talk to DOCTOR and Tri to find out what’s going on with you either physically or mentally. I feel for you, but I don’t know what else to tell you. I think that we had discussed with you all our experiences and Sims that you are different to all of us. I know that everybody’s different but, having been reading members experiences, I think since 2006, we haven’t been able to help you…abracos
It's ok. Being here and Journaling my experience already helps a bit. It would be good to report my experience for other people that are on the same boat.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Jim Allen

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Re: My journal here
« Reply #3 on: February 17, 2024, 04:08:21 am »
Quote
Everyone here seems to feel normal.

Nearly all the frequent posters are living with multiple health conditions and have challenges myself included. It's just that they are largely managing these conditions and are getting on with life with most of the conditions unrelated to HIV or HIV treatment.

I know from your previous posts you are dealing with several conditions & issues, so continue to work with your healthcare provider and I hope things get better for you soon.
« Last Edit: February 17, 2024, 04:10:25 am by Jim Allen »
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Offline Tonny2

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  • Posts: 3,168
Re: My journal here
« Reply #4 on: February 17, 2024, 06:54:10 am »



                    ojo.          @kirat. My friend, as Jim mentioned, a lot of us are having our oen issues, but life goes on. If you’re issues, don’t let you have a productive and happy life. Keep talking to you DOCTOR.. in my case I live with pain 24/7, but I have learned to live with it although yesterday my pain was so severe that I miss the peer support meeting. I went to bed around 630 or 7 PM and this is because I haven’t taken care of the cost of my pain, but definitely it is time to take care of it. Time to remove my blind eye…. as I said before, I feel bad for you, and I hope you feel better sooner rather than later….abracos

Offline Kirat

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  • Posts: 51
Re: My journal here
« Reply #5 on: February 19, 2024, 09:43:01 pm »
Thank you, guys. I'll keep updating you about my problems. Already started to make my fermented foods to see if it will help.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #6 on: March 26, 2024, 10:19:40 pm »
As of March 26th, 2024, my condition remains unchanged. I continue to experience extreme fatigue, difficulty breathing, nasal inflammation, and throat inflammation, characterized by what is now diagnosed as cobblestone throat. My gastrointestinal issues persist, causing significant discomfort and disruption to my daily life. Despite my efforts with probiotics, I have yet to find significant relief. Additionally, my lack of energy prevents me from engaging in physical activity or weightlifting, further impacting my ability to focus on my studies for college. I also experience occasional headaches, and my concentration continues to be impaired. This prolonged state of ill health has taken its toll on me, and I eagerly await my upcoming medical consultation with another doctor in the hope of finding solutions. The constant struggle with these symptoms has become overwhelming, and after over a year of enduring them, I am eager for a change.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #7 on: May 09, 2024, 10:56:03 pm »
Hi guys. I hope you guys are feeling well.
I am not :/
Still struggling with weakness, mental confusion, forgetfullness, concentration problems, some nausea, slow motor skill. Anyway, a mess. Started Wellbutrin 150mg in addition to Lexapro 20 that I was already taking. Let's see if it changes sth.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: My journal here
« Reply #8 on: May 10, 2024, 03:08:51 pm »
Sorry to hear that you're still having all those issues.

How's the new regimen going? How are you lab results going?
What about others beside VL and CD4? Is anything else out of whack?
What does your HIV doctor say about all this?
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

  • Member
  • Posts: 3,168
Re: My journal here
« Reply #9 on: May 11, 2024, 05:20:14 am »



            ojo.           Hello my friend!… I am so sorry that you are a stull not feeling well. Does your ID doctor know about you taking antidepressants?… keep fighting, and I hope somebody can help you to find out what’s wrong with you but, your HIV treatment is working, One less problem… Tell us, how was your life before your diagnosis?, Were you having depression problems before?… Wishing you the best, and please keep us posted…abracos

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #10 on: May 11, 2024, 03:40:55 pm »
Sorry to hear that you're still having all those issues.

How's the new regimen going? How are you lab results going?
What about others beside VL and CD4? Is anything else out of whack?
What does your HIV doctor say about all this?
Hi, leatherman, my labs came back mostly fine. I have a low vit D but I've always had it. And Anti-TPO 55, but she has not answered me.about it. I'm going to have a thyroid ultrassound but I dont think hypothyroidism could cause everything I'm feeling, specially because I'm already taking levothyroxine. I need to screen for another VL but now my college is so busy that I didn't have time to do it. I'm really concerned because I'm having strong anxiety, memory problems and my concentration is awful. It's reallly sad. I wonder if this is the onset of another disease like Parkinson's or whatever.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #11 on: May 11, 2024, 03:42:55 pm »


            ojo.           Hello my friend!… I am so sorry that you are a stull not feeling well. Does your ID doctor know about you taking antidepressants?… keep fighting, and I hope somebody can help you to find out what’s wrong with you but, your HIV treatment is working, One less problem… Tell us, how was your life before your diagnosis?, Were you having depression problems before?… Wishing you the best, and please keep us posted…abracos
I had depression before, but I was functional and my memory and concentration worked. And I didn't have fatigue and an anxiety so huge like I habe now. I didn't have the sensations I have now. After I got sick and went to the hospital, everything changed for worse. I'm really scared about not being able to finish medschool.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: My journal here
« Reply #12 on: May 11, 2024, 06:57:05 pm »
I wonder if this is the onset of another disease like Parkinson's or whatever.
keep working with your doctor(s) because it's something else besides the meds or an HIV reaction. Hopefully you'll be able to get some relief soon!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #13 on: June 05, 2024, 01:59:24 pm »
Hi, guys. I am better finally! I hope it lasts. Im not having the dizziness, the mental confusion and weakness/fatigue I was having. I think it was related to medication interactions and oversupplementing or whatever( not the ARVs though). I cut out my mood stabilizer(valproate) and all the supplements I was taking. Also, added wellbutrin 150mg to my lexapro 20mg.
Now im only taking 20mg lexapro, 150mg wellbutrin, dovato and levothyroxine. I feel back to normal thanks god, big relief for me.  Thank you guys for helping me out. Ill keep updating if I relapse or keep fine.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: My journal here
« Reply #14 on: June 05, 2024, 03:10:57 pm »
Hi, guys. I am better finally!

Ill keep updating if I relapse or keep fine.
hey! that's good news to hear.
Let's hope you "keep fine", and just forget about relapsing. ;) :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

  • Member
  • Posts: 3,168
Re: My journal here
« Reply #15 on: June 05, 2024, 03:42:02 pm »



           ojo.         @kurat I’m glad to hear you are back to normal, WOOHOO!!!. Now go out and keep busy and declare “I’m good and will be good firever”. It’s time for you to enjoy life again with a little bit of  positive attitude it will help you stay Focus in whatever you do in life. Remember that now that you are positive, you have to be more positive about life so you and your family live a normal life… I’m happy for you and please keep us posted, I’m sure that your next update will be at you have finished school and yes only good news…abracos

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #16 on: June 09, 2024, 11:31:03 pm »
I'll keepnyou guys updated. So far, so good! I can exercise, lidt weights and study again!
Life is back to normal.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #17 on: August 16, 2024, 06:49:54 am »
I wish I had good things to say. But after two months feeling normal, all my symptoms came back. No idea what it is. Very sad for me. And I ask the whole internet and all doctors, nobody knows what it could be.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Jim Allen

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Re: My journal here
« Reply #18 on: August 16, 2024, 08:18:11 am »
I am sorry to hear you are feeling unwell.

I know it can be one step forward, and two steps back at times before figuring things out but keep working with your healthcare providers. Whatever the causes hopefully your doctor will figure it out soon.
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

My Instagram
Threads

Offline Kirat

  • Member
  • Posts: 51
Re: My journal here
« Reply #19 on: August 16, 2024, 11:32:39 am »
I am sorry to hear you are feeling unwell.

I know it can be one step forward, and two steps back at times before figuring things out but keep working with your healthcare providers. Whatever the causes hopefully your doctor will figure it out soon.
Thanks, Jim.
I had two months that my life was fine. So, no idea now why it has come.back. My aunt(she is poz) said she has some fatigue once in a while, but I don't think what she has is what I have. Mine is too severe. Affects all my life.
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

Offline Jim Allen

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Re: My journal here
« Reply #20 on: August 16, 2024, 01:07:48 pm »
Living with HIV and fatigue happens, for various reasons but whatever is making you ill, sick and exhausted isn't HIV and something or a combination of other things.

Anyhow, good luck and keep working with your healthcare providers.
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

My Instagram
Threads

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: My journal here
« Reply #21 on: August 16, 2024, 03:51:27 pm »
Quote
11/01/2023 VL : U                       CD4 452 - 21.52%
08/10/2023 VL : U                      CD4: 397 - 23.22%
06/20/2023 VL : U                      CD4: 422 - 20.73%
01/17/2023 VL : 1430/mL           CD4: 300 - 10.45%
I don't know what's causing your issues; but if your 2024 numbers have been continuing the same trends as they did in 2023, then neither HIV or your meds is the problem. Continue working with your doctor to find another cause.

I hope you feel better soon!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Kirat

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  • Posts: 51
Re: My journal here
« Reply #22 on: August 19, 2024, 02:08:34 am »
I don't know what's causing your issues; but if your 2024 numbers have been continuing the same trends as they did in 2023, then neither HIV or your meds is the problem. Continue working with your doctor to find another cause.

I hope you feel better soon!
Right?! I had a good immune response to the meds. So, what the hell is happening with me.is a mystery still. I'll have to keep investigating. Thanks for your answer!
21/08/2024 VL : U         CD4  490(23.3%) -- CD4/CD8 ratio 0.83%
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U         CD4 452(21.52%)
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U         CD4: 397(23.22%)
06/20/2023 VL : U         CD4: 422(20.73%)
01/17/2023 VL : 1430/mL           CD4: 300(10.45%)
Started Dolutegravir + Tenofovir/Lamivudine

 


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