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Author Topic: Intro JJ 4 NOW - I feel neurologically damaged from Atripla  (Read 1392 times)

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Offline JJ 4 NOW

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Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« on: August 09, 2019, 10:51:32 pm »
Hello and thank you for taking the time to read this.

I was diagnosed with Aids at the age of 33. I am now 41. For the record, this was contracted sexually. After a hellish 4 months of being sick - I 'm sure many can relate - and several followup months of testing, the verdict was in. My CD4 count was about 150 and my viral load was in excess of 350,000 copies/ml. I was immediately prescribed Atripla. It saved my life. I have been undetectable for at least 6 years and my CD4 count remains somewhere in the 600 range. I continue to remain celibate since my diagnosis. I am grateful to have a place to share this brief synopsis but also feel obligated to do so on this forum.

The reason for this post is because of my UNBEARABLE SUFFERING. Yes Atripla saved my life and yes I was told that the Efavirenz component would cause nightmares. I was also informed that they would subside and I would adjust. I DID NOT. After 35 months of the most vivid, bizarre, graphic/violent, lucid and terrifying sleep every single night, I worked up enough courage to switch to another drug. It required a massive leap of faith. So I am now taking Stribild. However, the inability to cope with what I believe is permanent damage from the Efavirenz continues.

Although I have been on Stribild since April of 2014. The tortured sleep mentioned above has NEVER ceased or even quelled. I worked under these conditions full time for 8 years. I live in the North Eastern U.S. in a fairly large city (population about 260,000). My reasoning for mentioning that fact is because I have exhausted all leads here as to why these nightmares continue. My ID doctor and his colleagues, multiple PCP physicians, several psychiatrists and even neurologists that have performed extensive sleep studies are all baffled. I have been prescribed various medications by all but to no avail.

This all began the instant I began taking Atripla - I remember my first wicked night of sleep with this ARV in my system like it was yesterday. MY QUALITY OF LIFE IS NEARING ZERO. I have just taken a leave of absence from work because of my inability to cope. I do have plans to visit one of the best psychiatric hospitals in the country in the near future. I have found little evidence on the internet to support my theory/claim. I am desperate for help and answers and implore anyone that can relate or give advice that you may think I have not already gotten to respond to this post.

Again, thank you.
~ JJ 4 NOW

Offline leatherman

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #1 on: August 10, 2019, 07:28:18 am »
However, the inability to cope with what I believe is permanent damage from the Efavirenz continues.
Some ARVs have been know to be hard on the kidneys and cause some bone degeneration (both issues are known to halt when those medications are stopped), and lipodystrophy but no long term mental issues after stopping.

I could only stand Sustiva for 9 months because of the mental issues (horrible nightmares, insomnia, and a drunken feeling that never stopped). Of course back in 1998 when I was taking Sustiva, I was resistant to multiple medications so I was "stuck" with this med until something newer came to market. When I did stop it, it was against medical advice and I nearly died from AIDS/PCP before there were any more meds on the market. Eventually in my 27 years of meds, I've changed regimens over a dozen times until I found the meds I've been taking for over a decade. (although even that regimen has been tweaked a bit as these meds have been refined and combined)

What I don't understand from your story is why you still haven't changed to another medication when there are so many options. It's a shame you didn't switch to something sooner and it's a shame you've waited so long on Stribild. I can't imagine any patient consistently describing this problem and the doctor not even suggesting another change. (it's also a shame that you're doctor didn't explain things better to you so you didn't feel that changing meds was such a "leap of faith". This isn't the 90s and your doctor should be trying to get you onto the best regimen that works for you - without side effects) Set an appointment Monday morning and politely request/demand your doctor prescribe another regimen! There's no sense in living with such a horrible problem/side effect when there are so many options these day.

I continue to remain celibate since my diagnosis.
oh my! If I were you, I would try to change this situation too! I would hope that you've at least had an undetectable viral load after all these years so there's no way you could transmit HIV and no reason to not have sex.
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Offline JJ 4 NOW

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #2 on: August 10, 2019, 01:27:11 pm »
Thank you for your time and information leatherman.

Both of the ID doctors I've been assigned said there was only 1 other option in terms of treatment for me because of my Hep-B. Forgive me for not mentioning Hep-B in my original post. I do not recall the name of the drug but I was told by the doctors that some people have an immediate fatal reaction to it and that further testing would need to be done on me to see if I fall in to that category. That was enough to scare me away and keep me on Stribild. They insist that there is nothing in Stribild that can cause what I'm experiencing. They say that the culprit Efavirenz component has been removed and remain puzzled. To their credit, they did try to move me off of Atripla sooner but I was terrified that only that hellish drug could save my life and that other treatments may fail. So I was stuck mentally. I have found a post on i-base from many years ago with a story VERY similar to mine. I do not know if I am allowed to hyperlink in this forum, if I am and you are reading this please let me know. I mention this other post because I feel I'm not alone but an exceedingly rare case. What's interesting to me is that my first ID doctor told me Hep-B could not be cured. When he left the practice his colleague said it could be cured between the meds and the body itself. So he had some tests done and told me my Hep-B was cured. No longer did I have it but I could not contract it. I was now immune. Does that sound right? It was puzzling to me after being told the contrary for almost 7 years. I mention this because I assumed this would give me more treatment options, maybe less harsh, since I no longer need to fight Hep-B. However, I was told my choice was still Stribild or the other potentially fatal med.

With respect to the 2nd point you made. I get the U=U concept but the ID doctor I see seems hesitant to go all in on this notion. What scares me more than anything and keeps me celibate is becoming reinfected and untreatable. Or, possibly passing this along to someone and have to have them endure the same living nightmare I do. I must say that remaining celebate seems to be terribly mentally unhealthy for me.

Thank you again, leatherman. This is my first time reaching out and I am delighted you responded. I will contemplate your advice.

I know I can be tangential, so I just want to reiterate that this post is about my belief that Efavirenz has caused some irreparable neurological harm to me.

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #3 on: August 10, 2019, 01:52:25 pm »
To be honest it sounds like you need better doctors including an ID doctor to start with, if this had been my doctor's they would have been fired from my care a long time ago even if it meant moving town for better care

Potentially fatal med .. aspirin? Look there are drugs with hypersensitive warnings however they can also screen for this before switching, example DTG dolutegravir

Jim
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Offline JJ 4 NOW

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #4 on: August 10, 2019, 02:02:14 pm »
Thank you, Jim. Agreed. That is exactly why I took a leave of absence from work for 6 months. I am leaving the state for a massive upgrade in care next month. I posted on here to get feedback before I go. You guys are not disappointing me!

Offline leatherman

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #5 on: August 10, 2019, 07:57:41 pm »
What scares me more than anything and keeps me celibate is becoming reinfected and untreatable. Or, possibly passing this along to someone and have to have them endure the same living nightmare I do. I must say that remaining celebate seems to be terribly mentally unhealthy for me.
a couple of comments (i live in the carolinas so "a couple" could mean 2 but it could also mean a few more than that LOL)

Quote
becoming reinfected and untreatable
1. reinfection is a mostly a myth. We know that PrEP (pre-exposure prophylactic) stops HIV. HIV meds are used for PrEP..... so your meds work as PrEP stopping a new HIV infection from taking hold. If the meds you are currently using work properly (i.e. your undetectable), then they are keeping HIV (new and old) from reproducing so there simply isn't a reinfection.

however, there's one great example to explain how reinfection is possible. So there were these two guys. Both are positive. both were hospitalized with AIDS. treatment wasn't working anymore because neither was adherent to the meds - which had also caused both to have resistance issues, but to different meds. Both were very ill with high viral loads and low-to-zero level of meds in their systems anymore.

and here's the kicker - both of them had unprotected sex with one another. (some people are just too horny for their own good. lol. even hospitalized!) Blood work showed that each of them end up infected with the mutation of the other guy's HIV. there's reinfection (sometimes known by "superinfection") for ya! It does happen but both partners (no longer treated or non-adherent) have to have viral loads and both have to be unprotected from HIV.

2. as to "untreatable", I've gone through 23 meds in the 27 years I've been using ARVs and the last time I was "out of options" was in 1999... that's two decades ago. I seriously doubt, with these new improved regimens, that anyone is "untreatable" anymore.

Quote
I get the U=U concept but the ID doctor I see seems hesitant to go all in on this notion.
. . . possibly passing this along . . .
3. ummm, obviously you don't get the concept really.  ;D U=U, or as we were formerly talked about it as TasP i.e. treatment as prevention, is just what both say: if you are undetectable for 6 months you can NOT transmit HIV. google "U=U", every leading health organization states this now.....

4. .... which leads to me to having to say that your doctor is completely wrong. Of course, too damned many doctors are sex-phobic and especially gay-sex-phobic (even the good ones at good HIV clinics), and too often they tell their patients half-truths and sometimes even lies so they don't have to actually talk about their patient's sex life. Lies about "possibly passing it on" and lies that having sex could lead to <gasp> "reinfection". Sadly in reality these are life-altering comments from doctors - and not life-altering in the good way. Patients hear this stuff and never understand how treatable HIV is, how easy it is to prevent it spreading, and how little to worry as long as HIV is kept virally suppressed.

other issues aside, your doctor's misinformation to you has negatively affected your mental health, emotional well-being, and sexuality.  :( >:(
Quote
I know I can be tangential, so I just want to reiterate that this post is about my belief that Efavirenz has caused some irreparable neurological harm to me.
tangential often leads to knowledge spreading and people learning.

I am sorry about your main issue though. Sustiva (efavirenz) was an awful medication for me. It stopped me working :o, driving :o, and even leaving my house :o. I never lost the drunk feeling, and woke up endless night, screaming from the nightmares. One morning I stayed in bed as long as I could, hoping the effects would wear off somewhat, so I could go downstairs and let my dogs outside. I fell down the stairs and laid in a crumpled heap at the bottom. thinking about how I could have broken my neck and died, I never took sustiva again. Death was better than the life I had suffered for 9 months on that god-forsaken med.

Fortunately my mental health issues cleared up within a week of stopping Sustiva. But unfortunately then in 1998 there weren't any more meds to take and in 9 months I was in the hospital on my birthday for the 2nd time in three years, dying of AIDS. Thankfully they just keep making and improving HIV meds and I soon as I started something new, I got pulled back from the brink and now haven't been back in the hospital for 21 years.

I certainly hope that you are able to get better treatment, better meds, and better health soon.



oops! one more of my couple of points

5. as to Hep B, it depends on whether it was acute or chronic. (btw, I had acute Hep b ;) )
Quote
Acute hepatitis B infection does not usually require treatment and most adults clear the infection spontaneously.[77][78] Early antiviral treatment may be required in fewer than 1% of people, whose infection takes a very aggressive course (fulminant hepatitis) or who are immunocompromised. On the other hand, treatment of chronic infection may be necessary to reduce the risk of cirrhosis and liver cancer.
leatherman (aka mIkIE)


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Offline JJ 4 NOW

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #6 on: August 10, 2019, 11:00:06 pm »
I believe you are correct on several counts leatherman. Thank you for your continued support. You're truly an open book and extraordinarily generous with your time. Also, thank you for your endless volunteering as a moderator and practical insight Jim Allen. I wish the following would be my final word on the matter but I have a feeling it will not.

MY SPIRIT HAS BEEN ABSOLUTELY CRUSHED BY 8 YEARS OF NIGHTMARES. ATRIPLA WAS THE IMPETUS. I TOOK IT FOR 3 YEARS. I HAVE BEEN OFF OF IT FOR 5 YEARS. WHY IN GOD'S  NAME DOES THE HORROR CONTINUE EVERY SINGLE NIGHT? FINDING PEACE IS MY ONLY PURPOSE. EVERTHING ELSE IS ANCILLARY. I MISS LIFE DEARLY.

Online Jim Allen

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #7 on: August 10, 2019, 11:19:46 pm »
I think the answer sadly is starting from scratch. Firstly getting new doctors, ones that know what they are talking about, switching meds would be my next step and seeing how that plays out whilst continuing to work with the psychiatrists.

Did any of the latter BTW ever consider PTSD? I believe a life-threating event commonly would be needed with ongoing reminders/reliving it and, as we all perceive the level of threat psychologically differently and at levels without always knowing it, who knows an AIDS diagnosis and, continued taking meds as a reminder/trigger? Just thinking out loud.

You also mentioned you were very sick at the time, damage due to IRIS or other treatments?

Anyhow hope things do look up for you soon and, that you have better (up-to-date) medical support from your new doctors.

Jim
« Last Edit: August 10, 2019, 11:25:03 pm by Jim Allen »
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Transmission and Risks:
HIV Transmission and Risks
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Offline MadDog125

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #8 on: August 11, 2019, 10:08:37 am »
On a related note advanced HIV infections especially in AIDS cases have been known to cause neurological,  and neuro cognitive impairment.
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24
17APR19, cd4 157, VC <20
24MAY19, cd4 340, VC <20
12AUG19, cd4 304, VC 51

Offline Expat1

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #9 on: August 12, 2019, 12:25:32 pm »
When I started, I was on Atripla, and I had problems with dreams, not so much violent but overly tedious, exacting and detailed.  Woke up very tired and not rested. 

After eleven months I switched out the a EFV and replaced it with rilpirvirine RPV and been happy with it for over 5 years.  I also became very moody with Atripla.  After stopping, the dreams went away in about 3 days and the moodiness in a week.

U+U so you can have sex, you will not pass the virus to others.   In fact it will probably help some of the emotional issues.

I agree with Jim,  It really sounds like PTSD  post tramatic stress disorder. 

The med you probably could not take is Nevirapine (NVP), brand name Viramune, as it is sometimes toxic to the liver.   

My partner takes Atripla, (generic version and loves it) no issues with it.  Once they switched him to GPO-Vir Z   (AZT, D4T, and neviripine) and he developed a rash (very prominent and red) was taken off  and told never to thak nevirapine again as reintroduction could be fatal due to  liver issues. 

I have HepB cleared and the literature goes back and forth.  Mostly if you stop Tenofovir or 3TC you need to watch the liver function tests very closely for flareups if even if previously "cleared".    As it can reactivate. 

I also agree you need a new doctor.  One you can work with.

Offline harleymc

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #10 on: August 13, 2019, 02:00:16 am »
JJ
 sorry to hear you're doing it tough.

By all means go and make an appointment with another ID doctor.  At very worst you get a second opinion, at best you will find a new fantastic doctor who can sort things out for you.

The brain's a funny old thing, it forms patterns of thoughts and feelings that can be really hard to break.  So you may have formed some patterns on Atripla that are continuing even with the change in regime.

 You may get some help from a psychologist/ counsellor.  I'm a great fan of Cognitive Behaviour Therapy and mindfulness but they may not be everyone's cup of tea.

Best of luck with getting some change,

keep us updated.

Offline HIVSince1995

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #11 on: August 13, 2019, 10:09:44 am »
Hey @JJ 4 Now

You've already received so many great answers that I feel all I can offer is my Experience, Strenght and Hope.

I was on Sustiva for a short time and had the same horrible nightmares you describe.  As you said, they were beyond vivid.  I told the doctor that it was like going from a black and white TV to a High Definition and all the channels were showing horror movies.

The most important thing I did was stay on my meds, make an appointment and tell the doctor what was happening.  He changed the Sustiva component of my meds to another med (Viramune if I recall).

Like you, the nightmares didn't go away.  I thought I was broken forever.  Without mentioning the name of the medication (I'm not a doctor and only share my personal experience), I was placed on a very low dose of a generic medication that is normally used for blood pressure - it slows the heart rate down.  I took it right before bedtime.  At the very least it stopped my racing heart and that helped somewhat.

It took months before the nightmares stopped.  I wasn't on Sustiva for anywhere nearly as long as you were.

Later, I was placed on medication for another non-HIV related problem.  The nightmares came back.  Since this condition wasn't life-threatening, I stopped the meds and made a doctor's appointment.  The doctor said that although nightmares were rare, they could happen with this medication.  I told him about the problem years before with Sustiva and he wasn't sure if my experience with Sustiva makes me more prone to medications that cause nightmares or not.  The good news was there were several other medications.

I know some think that the "one pill generation" has it easier than old folks like myself that went through the early versions of the medications.  However, your experience shows me that in many ways you have as much of an onus as I did.  It's not as easy as "take one pill once a day" and then go back to living your life.  It's really difficult.

I know (as I get older) that many medications have some odd side effects. 

JJ, I'm glad you're off Sustiva and hope that as time goes by you will stop having nightmares.

OK, that was my experience, strength and hope.
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
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Offline wardp

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #12 on: August 13, 2019, 12:42:15 pm »
Im on nevirapine.the key word is 100% monitoring in first few weeks. ie liver tests and look out for rash any symptoms and straight on the phone to your Dr. It has and is a great drug for me after sustiva neuro effects. Good luck I hope you change from sustiva soon.
Diagnosed 20,July 2017. Cd4 289, 21% vld .3,462 Started atripla 4 Aug 2017 5oct 2017 cd4 384 21%, vl ud less than 20. Switch to complera 4 Nov 2017 switched to stribild 15 the Nov. Switched to truvada efavirence 200mgx2 14 Dec 2017, 2 Feb 2018, us cd4  466, 25%  CD 8 ,595, 32%..1 may 2018
switched  to instgra truvada.7th june switched to truvada  nevirapine stavudine. .21 june switched to truvada nevirapine. X 2 a day...9 aug 2018 ud. 2n Nov 2018 CD 4. 455..22.70% 13th Nov switched  to lamivir and nevirapine  due to kidney issues...jan 10,2019 UD..may 13 2019 ud  cd4 482 28% 14th nov 2019 ud. Cd4 414 .27% cd8 444 29%

Offline JJ 4 NOW

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #13 on: August 14, 2019, 06:15:05 pm »
I am becoming convinced that what I am experiencing is PTSD. I'm not sure what else it can be. Though I have not ruled out long-term damaging neurocognitive effects from Efavirenz in addition to PTSD. This theory can not be ruled out. The more I research via the web the more abstracts I read that delve in to this possibility.

Was I so traumatized by 35 months of ingesting this life saving but mind altering chemical that I can not get over it?

I have HIV. It's my fault. It's forever. It comes with a myriad of complications without ART. I'm learning to accept this. However, what I am experiencing is WAY out of the norm. Maybe I'm one in a million. I do know it started with Atripla.

I will continue on until I find an answer. I will share it with this community when that day comes. I owe it to POZ and the community for taking me under their wing. I hope to gain knowledge through my experience that will help future readers of this forum. As the members that have replied to my post have done.

Are there those much worse off than me? Yes. Could I have acquired this disease like too many troubled souls as a non willing participant? Yes. Am I fortunate to have the resources at this time to possibly find a solution that will lead to some quality of life? Yes. I am well aware of these facts. I hope I am not being selfish.

A few comments on a some things mentioned by those members that have replied to this thread:
- I have tried many drugs to curb these nightmares including alpha and beta blockers.
-I have been off of Sustiva since 04/2014
-I will try CBT
-My Hep-B was chronic
-I will get as many opinions as it takes. 2nd, 3rd, 4th, etc...
-I was on what felt like my death bed for 3 1/2 months prior to treatment but did not experience IRIS as far as I know.
-Sex is healthy - on every level
-If a new ID doctor offers me a different drug, I will try it. I may demand it.
-Thank you for relating with your own accounts of nightmares from Efavirenz.

I will keep this thread going until it stops of its own volition.


Online Jim Allen

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #14 on: August 15, 2019, 04:41:13 am »
Quote
I have HIV. It's my fault. It's forever.

 :'(

There is little point blaming yourself, yes you have HIV and it's more then likely for ever.  I doubt you did it on purpose, very few of us wake up one morning deciding today I am going to get me some HIV. We are human, did something biological driven & natural that billions of other people also do, so don't be too hash on yourself. It's okay to forgive yourself.

Do you talk to anyone face to face about this?

Was I so traumatized by 35 months of ingesting this life saving but mind altering chemical that I can not get over it?

Could be many things if you are thinking PTSD, as simple as the AIDS diagnosis & being sick was the trauma, taking meds was just an ongoing reminder/trigger of the trauma not the cause as example. Just the sickness itself or a combination of things, and that if it is PTSD as it could be something totally different.

All the theories in the world are nice, but they don't resolve much at the moment.  The first practical problem I think is seemingly the below standard of care you have had, so who knows. Wise step would be to park the theories for the moment and, to engage with the new doctors as who knows they might have an idea or solution.

Best, Jim
« Last Edit: August 15, 2019, 05:03:33 am 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:
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Offline HIVSince1995

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #15 on: August 15, 2019, 02:52:27 pm »
I have HIV. It's my fault. It's forever. It comes with a myriad of complications without ART. I'm learning to accept this. However, what I am experiencing is WAY out of the norm. Maybe I'm one in a million. I do know it started with Atripla.

I won't take issue with your statement "it's my fault".

If that is your truth, then it is your truth.  I can share with you that I don't think it's my fault I have HIV an more than it's my fault I have side effects or problems of any number of medical conditions.

Of course, it's my fault that my cholesterol is high.  I eat pork chops and wash them down with a Crestor to lower my cholesterol level.  Would it be more logical to eat a lower-fat diet that contains less cholesterol and not take Crestor to lower my blood lipids?  Yes but, I'm unlikely to change.

I like many people don't get enough exercise.  There are so many health benefits to getting enough exercise and I know it.  Still, I don't "just do it".  One day will I kick myself in the but when a medical condition comes up that might have been prevented by exercising more?   No, because without exercise today, I won't be able to kick myself in the butt.  Yet, in my mind, I might blame myself.

The list goes on but, you get the point.

In life, there is no shortage of organizations and institutions willing to judge me.  Schools literally judged me with a grade on every paper I turned in and every test I took, the police will judge my driving if I speed or make an illegal turn, family and friends might judge the way I live my life, churches and religions of every flavor seemingly have no end to the way they'll judge me and that list goes on as well.

So, I try to not judge myself unfairly.  Sure, if I overdraw my checking account, I'll be mad at myself for doing that.  Yet, how long will I beat myself up over it?

With HIV, the treatments are, as you said, currently life long.  HIV found its way into you - you didn't go out and find HIV.  Using a condom can prevent HIV and maybe you're judging yourself because you failed to use a condom.  You have every right to do so if you want to.  I know I wondered for years how I got HIV.  In the end, it will remain a mystery for me.

80,000 Americans die from the flu virus annually which can be treated with the antiviral Tamiflu
(https://www.cnn.com/2018/09/26/health/flu-deaths-2017--2018-cdc-bn/index.html)

16,000 Americans die from the HIV virus annually which can be treated with various antivirals.
https://www.cdc.gov/hiv/statistics/overview/ataglance.html

The spread of the HIV virus is drastically decreased by the use of a condom to the point of almost zero transmission.
http://www.hiv.gov

The spread of the flu virus is drastically decreased by the use of soap and water for handwashing and by getting an annual flu vaccine to point of almost zero transmission.
https://www.cdc.gov/flu/prevent/index.html

I've gotten a flu vaccine almost every year for over 2 decades, wash my hands frequently and still have gotten the flu a couple of times during that period.

Sometimes, no matter how careful I am, things still go wrong even though I try to be careful.

My experience is that you are correct.  There was some PTSD involved in my HIV diagnosis.  While other events in my life contributed to PTSD symptoms, HIV find its way inside me didn't help my PTSD any, that's for sure.

Your journey is valid and ultimately you will take the path that makes the most sense to you and seems to be helping yourself.  I can say, "don't be too hard on yourself".  And you still will be.

So, instead, I'll say, "you are doing the right thing by keeping this thread alive".  Introspection not designed to beat yourself up is a good thing.





Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline TabooPrincess

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #16 on: August 16, 2019, 02:24:57 pm »
Atripla is evil.
I didnít even realise what was happening until one day a few months in I thought Iíd crash my car.....just because.
I went to the docs the next day and had my pills switched and the suicidal dog left instantly but I still feel slightly screwed from the dark place that took over me. The idea that we are just a few pills away from wanting to end it all and donít even realise it!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline MitchMiller

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #17 on: August 22, 2019, 02:15:30 am »
I've been taking Sustiva for about 17 years.  The 600mg dose is too much.  WHO studies (ENCORE 1 & 2) have demonstrated 400mg is an adequate dose.

I switched to 400mg in 2014, which greatly reduced the side effects.  When I was taking 600mg Sustiva, if I took it on an empty stomach (as recommended), there was hell to pay.  It made me feel horrible and I had to immediately lie down.  I would fall asleep immediately and sleep for about 3 hours and wake up with my brain feeling severely abused and feeling hot, sometimes sweating.  It also caused bouts of irregular heart beat, sometimes skipping beats, sometimes two second bursts of rapid heart beat.

With the 400mg dose, I still have vivid dreams, but it is far easier on the brain and I have far fewer bouts of irregular pulse.  I actually look forward to those dreams.  Adding melatonin makes the dreams even more vivid.  I was at a party a couple nights ago and really enjoyed the conversation.  It's like going into The Matrix.  If I could stay in there, I probably would!  That world is far more interesting than my day-to-day life.

The one major issue I'm facing is a slowing pulse (resting is about 48 & has been as low as 37 immediately after I wake from sleep).  It turns out that this side-effect has emerged in some long term users of Sustiva and has been added as a warning to the label for the drug.  I plan to stick w/it two more years and perhaps switch when I become eligible for Medicare.  Hopefully my ticker won't grind to a halt before then.
« Last Edit: August 22, 2019, 02:34:36 am by MitchMiller »

Offline JJ 4 NOW

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #18 on: September 03, 2019, 01:35:00 pm »
Hello again. It's "JJ 4 NOW". I want to thank everyone that continues to visit this post - especially the members gracious enough to share their life experiences through posting. I am going to add a link - if it is OK with the moderators - that I found on 'i-base'.
Here it is: http://i-base.info/qa/110
After reading the question, you will see 9 responses. Please scroll down to the 8th response posted by a user named EDDY.
It is the only example I can find on the internet that echos my situation very, very closely.

~Best to all...

Online Jim Allen

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Re: Intro JJ 4 NOW - I feel neurologically damaged from Atripla
« Reply #19 on: September 03, 2019, 04:13:42 pm »
Hiya,

How have you been getting on? Have you been able to connect with a new healthcare provider already?

Best, Jim
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