My journal here

[Kirat]

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!

[Tonny2]

          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

[Kirat]

          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.

[Jim]

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.

[Tonny2]

                    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

[Kirat]

Thank you, guys. I'll keep updating you about my problems. Already started to make my fermented foods to see if it will help.

[Kirat]

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.

[Kirat]

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.

[leatherman]

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?

[Tonny2]

            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

[Kirat]

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.

[Kirat]

            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.

[leatherman]

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!

[Kirat]

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.

[leatherman]

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.

[Tonny2]

           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

[Kirat]

I'll keepnyou guys updated. So far, so good! I can exercise, lidt weights and study again!
Life is back to normal.

[Kirat]

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.

[Jim]

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.

[Kirat]

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.

[Jim]

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.

[leatherman]

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!

[Kirat]

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!

[Kirat]

Oct 23rd/2024 Journal:
 
Still miserable. Acid reflux, shortness of breath, mental and physical fatigue, weakness. I have no idea what is happening to me, but for the last two years my life has been hell.
PPI's don't help, so I have no idea. I read half or even more of the individuals with HIV have acid reflux. 😞

[leatherman]

sorry to hear that you're still having such problems. that's got to be terrible.

Are you working on changing food to work against the reflux? How's the rest of your blood work look? what has your doctor had to say about all this? Do you see just an HIV provider or have you been talking to a GP?

[Kirat]

sorry to hear that you're still having such problems. that's got to be terrible.

Are you working on changing food to work against the reflux? How's the rest of your blood work look? what has your doctor had to say about all this? Do you see just an HIV provider or have you been talking to a GP?

Hi, leatherman! Thanks for your concern. I've been careful not eating spicy food, soda and stuff, now I'm also starting intermittent fasting cause that seems to help me mentally. It's just been an exhausting battle agaisn't whatever I'm fighting. Since I went to the hospital two years ago, my life was never the name anymore. The HIV doctors say it's not the virus or the medicine. The GP gave me endoscopy and it didn't show anything.  I tried PPIs but they don't help. Whenever I have this acid reflux, I have a huge mental laziness and fatigue, shortness of.breath and inflammed nose. I guess the shortness of breath and inflammation is due to the reflux that inflammes the nasal mucosa. I plan to test for sibo and to see if I have any problem with my esophagus functionality that might be causing this acid reflux. Sometimes I'm just so fatigue that I can't even talk, like right now. It's difficult to talk, too much energy :/

[Tonny2]

           ojo.        Hi kirat, I am so sorry to read that you are still having problems with your diagnosis. Your doctor has told you that whatever you are feeling has nothing to do with HIV or the e medication. I hope you can find peace in your mind and find out what the problems you’re having…abracos

[Kirat]

So, I think(I hope) I figured out my problem. I was taking levothyroxine, dovato, wellbutrin and lexapro all at once in the morning. I decided to change and take wellbutrin and dovato in the morning, levothyroxine and lexapro at night, and I have been feeling better. So, I was probably intoxicating myself with so many medications. I hope I'm right, cause I'm feeling ok now(despite a cold).

[leatherman]

I have been feeling better.

despite a cold

fingers crossed that switching the timing was the key.

keep the kleenex handy and get well soon.

[Tonny2]

         


               ojo.             Hello Kirat, did you talk to your doctor about the switching of your medications?. I think that the levothyroxine is supposed to be taking on an empty stomach. If he knows about you switching your meds then I’m glad that you are feeling better… Please keep us posted…abracos

[Kirat]

Apparently that is not the cause. I keep feeling bad. 😥
I guess my life is gonna be difficult.

[Kirat]

Ok, you guys know my story so far. I'm thinking it's time to try a different regime. None of the symptoms I had improved. They only got worse. I think maybe dovato is making my CNS damaged or messed up. My anxiety is through the roof, I have panic attacks now, depression probably, huge brainfog, SEVEEEERE fatigue(can't raise my arms sometimes of how tired I am). Guys, I'm sorry I'm complaining again, but I'm losing hope in a better life and I'm having suicidal thoughts. Don't you guys think it's time to change my regime? I read dolutegravir can cause psychiatric symptoms to get worse. It's been two years and I haven't improved, only got worse and worse. I'm 27 yo, I dont want to live an entire life of suffering. Now I caneven have an erection  due to my fatigue. I'm addressing my silent reflux already, but the severe mental and phyiscal fatigue is not a symptom of that.

[Jim]

Hiya.

Sorry to hear about your ongoing pain and struggles.

DTG in a few people has worsened preexisting issues such as depression as mentioned in your previous threads.

I know you have struggled with mental health challenges and other challenges before your hiv diagnosis & starting hiv treatment and, switching hiv treatment since starting has made no difference as expected. I wish you well and do hope you feel better soon.

Please don't wait,  go to the emergency room now, they are professionals and are there to help, tell them you are suicidal and get some emergency support and psychiatric care.

Hugs

[leatherman]

Don't you guys think it's time to change my regime?

I can't offer suggestions because changing HIV meds is mostly based on having an unsuppressed viral load. What are your current cd4 and VL numbers? And how long have you been on the meds you're currently taking? I seem to think you've been on meds 2+ or maybe 3 years with an UD viral load and ok cd4s.

It's been two years and I haven't improved, only got worse and worse. I'm 27 yo, I dont want to live an entire life of suffering.

Please don't wait,  go to the emergency room now

Sorry that you are still having so many problems even after having being on meds for a couple of years now. I have to say you might should take Jim's suggestion. If you've been working with your doctor to determine what's causing these issues and still haven't reached a conclusion, then it's time to reach out to more doctors. What you're experiencing at your age and with the quick effective treatment you;ve gotten after diagnosis, you shouldn't be having these problems due to age or HIV. Clearly, more testing is needed to determine what the issue is.

To get back to my original point, you need to know which of the issues, if any, are related to something else, and which might be related to your current meds. Changing a regimen isn't always a game-changer but when it is, it can also just as likely bring around more issues. If your current regimen is keeping you UD and letting your cd4 rise, then your regimen is working. That's why my first advice about regimen change is to never change something if it isn't broke. As we've mentioned to you many times, unfortunately you're going to have to advocate for yourself and keep reaching out to doctors to determine what is causing this vast array of the issues you're having.

[Kirat]

It's so strange that I have these severe fatigues,  my cognition is non-existant. My year academically was horrible this year. So far I've ruled out so many things, I had cardiologists, ecocardiograma, holter, stress test, lung dlc, chest x ray, thorax tomography, spirometry, ent discovered swollen turbinates but he said that's not the cause of my severe fatigue. The only thing is this silent reflux that caused my nose to be inflammed. But even though, headaches, dizziness, mental confusion, severe fatigue(cant even have sex anymore), they are all there and getting worse.

[Jim]

It's not hiv or your hiv meds, go to hospital!

Please don't wait,  go to the emergency room now, they are professionals and are there to help, tell them you are suicidal and get some emergency support and psychiatric care.

[leatherman]

It's not hiv or your hiv meds

I think this also. You've not only had some of these issues before HIV meds, but you've changed meds several times already....to no avail. I see in that list that you've had a lot of tests about your lungs. What about blood work or CT scans, etc for cancers or some type of autoimmune issue? Sometimes people have serious issues that take until finding the specialist to finally get diagnosed. Hopefully you'll get a diagnosis and solution sooner than that! Keep pushing your doctors for answers.

[Tonny2]

             ojo.              Hello jurar, I’m so sorry to read you feel suicidal, please don’t lose hope, you need help, mental help, please seek someone, professional, help then deal with hiv. You are a young man to throw the towel. We are here for you but you need to do the heavy lifting job…please keep us posted and seek professional help…abrazos

[Kirat]

I've had several exams:
Ecocardiogram fine
Stress test fine
Holter fine
Ent -> swollen turbinates and silent reflux, not.the cause of severe fatigue
MRI of my brain was fine
Endoscopy fine
Thorax tomography and chest x ray fine
My labs are normally all fine(blood count, kidney, liver)
I have a psychiatrist that I go to, I'm already on welbutrin and ssri
No autoimmune diseases

So, I dont know what to do anymore. I'm not dying, I think, so no hospitals are going to.take me. I don't have a healthcsre private plan, I depend on the Public Healthcare.
And again, my brain is not working, severe fatigue, can't lift weights, cant have sex, can't do anything. I know it's annoying to complain, but I just don't go where to go anymore.

[Jim]

Most of that list and the results are irrelevant.

So, I dont know what to do anymore. I'm already on welbutrin and ssri

my brain is not working, severe fatigue, can't lift weights, cant have sex, can't do anything

Understand you are stuggling with mental health and the impacts this can have, also appreciate you see a psychiatrist regularly but that hasn't been and isn't enough.

Now you feel suicidal as well , so go to the emergency room, tell them you are going to harm yourself and seek additional psychiatric & emergency care. Go now.

Again, sorry to hear that you are in this pain and sending you hugs.

[Kirat]

Thanks everyone for the replies. I've consulted another HIV doc and she thinks my neurological symptoms might be from the aracnoid cyst I have in my left temporal. So, today I've done an MRI to see if it is growing since last year. I'm also going to do a lumbar puncture to see if I have any intracranial hypertension. She's also going to switch to darunavir again, to remove Dolutegravir(just in case). But as Jim said, it's probably not the meds.

My MRI from last year:
Expansive extra-axial lesion consistent with an arachnoid cyst located in the left middle cranial fossa (temporal polar), measuring approximately 34 mm at its largest diameter, causing slight remodeling of the greater wing of the sphenoid and mild compression of the temporal pole.

[Jim]

She's also going to switch to darunavir again, to remove Dolutegravir(just in case). But as Jim said, it's probably not the meds.

DTG + 3TC + TDF switched to DVR + RTV + 3TC + TDF switched to DTG + 3TC and now switching back to a DVR combination. 

https://forums.poz.com/index.php?topic=77348.50

The HIV doctors say it's not the virus or the medicine.

I want to be clear, I am sorry to hear about your continued health challenges and wish you well, I am also worried that this has been dragging on so long for you,  please do keep us updated on how you get on in your journal thread.

However, your HIV status and HIV meds have not caused any of these issues, including antiretroviral toxic neuropathy, drug toxicity, cognitive decline, hypothyroidism, apnea, acid reflux, Parkinson's, worsening CNS damage, AIDS fatigue, headaches, dizziness, mental confusion etc, etc. Also, you are not an MD.

Now, I've given you a lot of room over the past two years but as a Moderator, I am now telling you no more blaming or bringing into question HIV or HIV meds for these ongoing and persistent physical and mental health challenges.

Again, I truly wish you well and hope you find solutions to these challenges soon with your healthcare providers.

Hugs.

my neurological symptoms might be from the aracnoid cyst I have in my left temporal. So, today I've done an MRI to see if it is growing since last year.

Well, good luck and hopefully this yields some answers for you.