my girl friend has just been diagnosed with aids

[needhope77]

My girlfriend was having problem with vision in her right eye. she also had anemia for 8 months, only in the last three weeks they found out she had aids her CD4 levels were 6 and viral load 280000. The eye problem was from aids opportunist infection CMV, that was attacking her vision. She was started on medication 2 weeks ago on a drip for cmv and then 2 days ago they added in antiviral medications she is in hospital in russia

LAMIVUDINE 150 mg twice per day
 Darunavir 600 twice per day
Ritonavir 100 twice per day
Tenofovir 300 once per day

i was tested i am negative,  we are so shocked
can she have a recovery above CD level over 500?
is the vision problem reversable?
is she at severe risk of permanent damage or death?
i read these medications have extreme side effects, will they change these medications if they can get her CD4 levels up?, anyone else have experience or knowledge  with these meds or the questions? sorry about all the questions. the doctots arent saying much. i know many people cant give medical advice but any opinions or experiences of what we can expect and the road ahead, i would be most grateful

[Jim Allen]

Hiya,

Welcome to the forum. I'm sorry to hear about your GF's HIV diagnosis. I sure it must have been a shock for both of you.

It's good your GF is in care, getting treated, observed and helped by her doctors. Try to not stress about "worst possible outcomes".

is the vision problem reversible?

The eye problem was from aids opportunist infection CMV, that was attacking her vision. She was started on medication 2 weeks ago on a drip for cmv

My laymen's understanding is treatment may prevent further damage. However, as there is already sight loss some permanent damage could be expected. 

https://www.poz.com/basics/hiv-basics/cytomegalovirus-cmv
https://www.aao.org/eye-health/diseases/what-is-cytomegalovirus-retinitis

i read these medications have extreme side effects, will they change these medications if they can get her CD4 levels up?

I think you are stressing about the HIV meds too much. Some people might experience side-effects but if that's the case they can switch treatments that suit them better.

Your GF only just started treatment, it's going to take time to settle into the treatment. If she does not have any problems with the meds then she could take this combination of medication for many years before switching regardless of CD4 count.

These meds should soon start to suppress the virus, allowing the immune system to start rebuilding for lack of a better phrase, her CD4 counts may then improve.

is she at severe risk of permanent damage or death?

With such low CD4 counts there is a chance she will feel worse before feeling better. Not just from healing itself but there are risks for new infections, issues asides from "IRIS".

IRIS (Immune reconstitution inflammatory syndrome) is when there are existing infections not reacted to by the weakened immune system but when the immune system does start to react it can cause problems. This is I would also guess another reason they first started to treat the CMV infection before starting the HIV meds.

As said at the start of my post and it's worth repeating  Your GF is in care, getting treated, observed and helped by her doctors. The treatment will suppress HIV and then her immune system can rebuild and heal. So try not to stress, just continue to be supportive.

Many members started with very low counts and various OI's, so try to keep a positive outlook in mind.

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

Jim

[needhope77]

thank you jim for the information

[needhope77]

when she is out of hospital, how long is it before she can get back to going about her normal life, activities, travelling, exercise, working etc can this be done while her CD4 levels are below 200 or will she be restricted in many things she does for a long time?

[Jim Allen]

Hiya,

If her CD4 counts are still below 200, the doctors may prescribe antibiotics to prevent certain infections like PCP. With extremely low CD4 counts, there might be a need to avoid raw, undercooked foods and ensure the water is safe to drink etc.

Normal day-to-day life activities generally can continue as normal. I never had any restrictions myself and I am sure the doctors will also cover this with her before leaving the hospital. However keep in mind that depending on how sick she feels and fatigued, she might not feel up to some activities. I know that I was easily fatigued for at least a year post starting treatment due to I suppose the damage HIV had done, this will always differ per person.

https://www.aidsmap.com/about-hiv/food-and-water-safety-people-living-hiv
https://www.poz.com/basics/hiv-basics/pneumocystis-pneumonia-pcp

[needhope77]

these medications above are they first line treatments still used in the USA and europe? since its russia i am concerned she may be on outdated treatment, i have a european passport, if there is better treatment out there maybe it would be best to try find a way to get her to europe.
whats your opinions jim on these antivirals  are they outdated or good quality?

[Expat1]

The meds she is taking are all good 1st line medications.  They are all used currently in USA and Europe.  There are a few newer versions of the meds but the advantages are minor and to get them outside a National program would be expensive.

They are not outdated, and if used consistently will restore her immune system. 

Like someone else pointed out, if they a
re effective she may take them many years.  If problems occur, the doctors may adjust as needed.

Her CD4s are low, but if she is otherwise healthy she can do normal  routine.

After her viral load is undetectable for six months, you can resume normal sex, until then use condoms.

Good luck for both of you.  Her doctors seem on top of this.

[needhope77]

thank you expat

[virgo313]

Hi needhope,

I am on what some called “older” meds & it is working very well for me. Of course I am from a country that does not have new meds. It already 5 years. What is needed is to start treatment & bring down the VL. Antibiotics is also needed to fend off any possible OI.

As for CD4 numbers, don’t stress too much as it will takes time for it to increase. How fast? Nobody can tell as the progress (of seeing increase in CD4) is different from person to another person.

Covid is still around, not sure it is wise to travel too much for treatment. I think better stay put as she has already started seeing Dr there.

[virgo313]

I also want to add that your GF CD4 is “higher” then mine when I first diagnosed. I feel very normal then. So, don’t worry much as she has already started seeing Dr.

[needhope77]

thanks virgo,
she is also very concerned that because her cd4 levels are very low and she has just started her meds, about the road ahead and what to expect during recovery. especially because she doesnt want her parents or friends  to notice she is sick. are there big possibilities she will suffer from huge weight loss, lydrophy, kidney problems, osteoporosis or even appear very unwell or anything else possible?  she doesnt want anyone to know there is something wrong, her family dont even know she is in hospital, at the moment you cannot tell by looking at her that she is sick. but in russia people are not as understanding and sympathetric or educated on HIV compared to the US or europe. 100 percent she will take the meds for ever, and we were planning to have a baby, which will have to wait now, but neither of us know what type of challenges ahead we will be facing

[virgo313]

One step at a time first. As soon as she start meds, she the VL will decrease a quite fast. That will ward off any other Possible OI. In other words, she most likely will not have other issue that will cause things like weight lost. Kidney issue can happen for people that is not positive, so this is not something she Shd be thinking now.

As other have mention, if she is fine now, there will not be issue now. Osteoporosis is more commen to elderly women when old. I mean like very old, again this should not to be taken into thought now.

Advise her to just be calm & take meds. Give herself few months time & when she have her VL blood test done again I am sure those VL will drop & she will feel better.

Treating VL is not like putting a plaster on a cut & u can see blood stop coming out of the cut. It takes time, so no need to stress too daily.

The aim now is only 2 things:-
1) bring the VL down
2) stop other OI coming
Already her Dr is doing this by giving her medicine.

[needhope77]

thank you for the information and advice

[kentfrat1783]

Hi,

Sorry to hear about your GF's diagnosis but great that you are still there for her and concerned. 

Like her, I started with a very low CD4 count of 2 and that was back in May 2017 and now I'm hovering in the 250 range.  My OI was PCP pneumonia and just recently got off Bacterium.   

A few things I have learned and I hope is helpful (and heard many of these in these forums):

1) Don't look at the numbers daily but see them improve over time.  Starting with a low CD4 it will take a lot more time to increase but let your body recover.
2) The medication is what keeps the viral load suppressed and then your body can work on regenerating your CD4.  Many think the medication creates the CD4 but it doesn't. 
3) Tell your GF to ask questions that she may have to her doctor/specialist.  For the first year I stayed with the same specialist I dealt with in the hospital but learned I needed different care.  Find someone that she feels she can trust.
4) No question is a stupid question.  It is all new to her. 
5) Now the hard one.  There may be times that she doesn't want to share something with you.  Please respect that.  This is a hard Dx to deal with.  Just let her know you are there for her.

Now for you.  Make sure to have someone to talk to if you need that.  The forums on this page are great and have great resources and information. 

Take care and I wish her and you well.

Kenneth

[needhope77]

thanks kenfrat.
Is it common to be kept on antibiotics the whole time while CD4 is below 200?
I was wandering if you knew or anyone else knows,

once the viral load is non detectable is it safe for her to be pregnant at any CD4 level , or must she have a fairly recovered immune system, and it must  be over a certain number ?

[Ptrk3]

Yes, it is protocol to keep people on Bactrim (or equivalent) until CD4's remain above 200.

I would address your second question to your (or your girlfriend's) healthcare provider, since pregnancy risks and related concerns matters can be an individual matter, irrespective of HIV-antibody status.

As long as your girlfriend is adherent to her antiretroviral regimen, she can live a full and complete life.

[needhope77]

thanks ptkr3, and thanks to everyone who has been answering my questions

sorry about all the questions our minds are racing and we are absolutely devastated not only by the diagnosis, but how we did not  find out earlier when she would have had her immune system not so damaged.

her career is permanent makeup which is like tatooing eyebrows and lips but its not as deep through the skin as a normal tattoo. i do not know, or have asked her how she thinks she became infected and i wont either.

i take it there maybe a chance this happened in her job, which leads me to my next question. it may sound like a stupid question

Now that she has aids must she find a new career path, or are there safety procedures she can do to continue on, in this type of field?  i have a feeling but i am not sure but in russia i dont think this would be allowed but if she can do this in europe we could move there, as an option if she wants to continue in this line of work.

 i am trying to help build a plan for her to give her options how she can transition back to normal life as easy as possible when she comes out of hospital without her going in to severe depression, or feeling completely lost and helpless.

 i have been looking through the internet for answers to many questions but it just makes me more nervous . its  comforting to speak to those of you who are going through what she is as i can see many of you are now living full and happy lives, and i want to get through these obstacles with her, so she can have a full and happy life to

[Jim Allen]

Hiya,

How she acquired HIV is of course not important, it wasn't from applying micropigmentation though.

There is no reason why she can't continue her career, although she would need to check as some states and nations have very outdated rules.

Jim

[Jim Allen]

i am trying to help build a plan for her to give her options how she can transition back to normal life as easy as possible when she comes out of hospital without her going in to severe depression, or feeling completely lost and helpless.

Look I think it's great intentions and there nothing wrong with doing the leg work on finding information for your partner. Just keep in mind it is one step at a time and it's her journey. It might be a while before she is ready to go back to normal life or work etc and its something to discuss when she is ready or wants to. 

[needhope77]

thanks jim

[needhope77]

she says she has numbness down her left leg and arm and feels like a zombie wants to sleep all the time, i am getting really worried.

is this from the meds or maybe IRiS, or something else?. she has been on also a med called cymevene (ganciclovir)i forgot to mention for the cmv that she started taking before the antivirals. they been doing constant blood tests since she been in and twice taken fluid from the spine, a mri brain scan tommorow. but they are not saying much to her

[needhope77]

i hope there wont be permanent damage

[virgo313]

Looks like her Dr is doing all to help her get better. Like giving her cymevene to stop viral infections. Starting so many medicine will need some time for her body to get use to it. It is normal to feel a little side effect at this stage. I personally had “needle poking” feeling when I was on Bactrim, but it gets better.

Jot down what she is going through right now & bring up the topics to her Dr when next visit. Dr will be able to advise more.

[Fareast4116]

she says she has numbness down her left leg and arm and feels like a zombie wants to sleep all the time, i am getting really worried.

is this from the meds or maybe IRiS, or something else?. she has been on also a med called cymevene (ganciclovir)i forgot to mention for the cmv that she started taking before the antivirals. they been doing constant blood tests since she been in and twice taken fluid from the spine, a mri brain scan tommorow. but they are not saying much to her

Stay strong. Frankly, even after a couple of weeks starting arv I still oversleep and feel tired on certain days. I guess it's the body fighting the virus(?) and we're simply expanding more energy than we need to. And i'd echo that there are time where certain random joint pains will happen here and there but even if you raise it to the Dr now, they'd ask you to give it time and monitor the situation.

[harleymc]

[Hi,  I'm glad your  girlfriend is getting good treatment.

You have so many questions.

Her anti retroviral are just fine, I was on a very similar combination for several years.


The retinitis won't spontaneously correct itself.  But I have no idea if surgeons can do anything.

The antibiotic will need to be taken untill your gf's cd4 count is above 200. That might take a year.it might take longer than that.

Parenting will be back on the options list, when your gf can maintain a viral load under 200 and of course when she feels that her health is good enough to provide care.  Having a child when she's not feeling confident about her health or her own health isn't something to rush into.


Good luck

[needhope77]

the mri was meant to be done on nov 21. but in the end they only got her in yesterday.
she has toxoplasmosis on the brain. the main doctors have gone home for the weekend and  they havent started her on medication for this. i hope monday.
i think this maybe the cause of numbness on her arm leg and side of her mouth. once she gets medicine for this how serious is this? is this numbness permanent? can she deterioate even for medication for this? anyone else on the forum had this? she has the slight slur on her speach. but her memory and all cognotive function is ok

[harleymc]

Toxo Is nasty, but it will be treated well.

Your Gf's increasing cd4s will eventually suppress any further outbreaks of Toxo.

Like all things that cause brain effects there are acute effects that clear over a few weeks.  If there has been more chronic damage that will also heal, physiotherapy can help there, in reestablishing neural pathways.

Just take each day as it comes, things will improve little by little.

[needhope77]

they put her on bistepol for toxo. i read on the internet this is for prevention not treatment for toxo. when she asked the doctors this, they said bistepol was a good treatment. we dont know what to think when its says clearly on the internet Pyrimethamine, folinic acid (leucovorin), and sulfadiazine are the gold standard. One week ago her blood tests were done again. Her viral load had dropped from 280,000 to 500 after the one month initial  blood test after start of antivirals, which is good news. they said her CD4 hasnt improved yet, which is dissapointing. they said they will keep her another month in hospital

[Jim Allen]

Hiya,

i read on the internet this is for prevention not treatment for toxo. when she asked the doctors this, they said bistepol was a good treatment.

Even going back years ago there were studies showing that Sulfamethoxazole and Trimethoprim (Biseptol) could be used in treatment, not just prevention.

My outdated awareness knew this and I am sure the doctors are more up-to-date so if they are saying it can be used as a treatment, I would be inclined to belive them.  Asides there might be medical reasons or drug limitations that are driving this choice of treatment you don't know.

Try to relax and don't stress too much is what I am trying to say. I am also sure you can find more recent studies then the ones I have on this topic if you want to do so.

Randomized Trial of Trimethoprim-Sulfamethoxazole versus Pyrimethamine-Sulfadiazine for Therapy of Toxoplasmic Encephalitis in Patients with AIDS
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC105601/

Trimethoprim-Sulfamethoxazole Therapy for Ocular Toxoplasmosis
https://www.sciencedirect.com/science/article/abs/pii/S0161642092318731#:~:text=Conclusion%3A%20Trimethoprim%2Dsulfamethoxazole%20appears%20to,Leucovorin)%20in%20treating%20ocular%20toxoplasmosis.

Canessa A, Del Bono V, De Leo P, Piersantelli N, Terragna A. Cotrimoxazole therapy of Toxoplasma gondii encephalitis in AIDS patients. Eur J Clin Microbiol Infect. 1992;11:125–130.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC105601/

Unfortunately, successful treatment of patients with a severely impaired immune system, such as AIDS patients, with P-S is associated with adverse reactions, particularly to the sulfonamide component, that may preclude their use in up to 40 to 50% of patients (6, 12). New antitoxoplasma drugs are needed because of the frequency of adverse reactions with the current drugs and the low level of activity of the current drugs against the cyst form of T. gondii and because drugs with improved pharmacokinetic properties, including greater bioavailability and higher and more persistent levels in serum and/or in the cell, are needed. Several studies have shown that trimethoprim (TMP)-sulfamethoxazole (SMX) is effective for the primary prophylaxis of TE in patients with CD4 cell counts of less than 100 cells/mm3 and positive serology (2, 18). In addition, the Centers for Disease Control and Prevention (3) recommended TMP-SMX for the primary prophylaxis of TE in AIDS patients with CD4 cell counts of less than 100 cells/mm3. However, the efficacy of TMP-SMX in the therapy of AIDS patients with TE has not yet been established. On the other hand, TMP-SMX has been shown to be effective against T. gondii in a variety of animal models (8, 10, 11), and several small nonrandomized studies have shown the beneficial effect of TMP-SMX in AIDS patients with TE (1, 13, 22). These promising in vitro and in vivo results from the use of TMP-SMX for the treatment of TE prompted us to undertake a prospective, multicenter, randomized, pilot trial to evaluate the effectiveness and safety of TMP-SMX as an alternative therapy for TE in patients with AIDS.

[Jim Allen]

One week ago her blood tests were done again. Her viral load had dropped from 280,000 to 500 after the one month initial  blood test after start of antivirals, which is good news. they said her CD4 hasnt improved yet, which is dissapointing. they said they will keep her another month in hospital

 

The VL dropping this much is great news, means the HIV meds are doing their job and starting to suppress the virus. Don't get too focused on CD4's, they are what they are and it can take time for them to go up, first and foremost she needs time to heal, treat the OIs' and after that continue to suppress the Viral load.

[Jim Allen]

Btw.

How are you doing and feeling? Understand your focus is looking after your partner but have you been looking after yourself as well?

[needhope77]

Thanks for the concern jim. the whole thing is still completely surreal. Due to coronavirus, there are no visitors allowed in the HIV part of the hospital , so i havent seen her since she has been hospitalised except on whapps app video.

Usually i dont like to spend so much time in russia so we spend most of our time travelling other countries. (i havent lived in one country for several years i have been a bit of a gypsy)

 I am out of russia now and trying to figure out the best time to come back. now that i am understanding her situation more, and that she has 2 ois and low cd4 and coronavirus is out of contrtol everywhere, i feel like i am limbo. when she comes out of hospital she has a home where she can stay with her family, recover her CD4 and stay out of harm of getting coronavirus.

We were planning before we understood the severity of things for once she came out of hospital i would spend a few weeks in russia with her then go somewhere travelling.
Also last year before she was diagnosed we were thinking about settling in europe later and trying for a baby, because i have been just travelling for several years not actually living in one place, like a gypsy.

Now i am trying to figure out in my head  when it is safe for her for me to visit her, since her immunity is so low.
how long we should wait before i can take her out of russia somewhere since she is on so many meds now for the ois and the virus

the trickiest thing of all is if we decide to settle in europe, for a non eu citizen it usually isnt so difficult if their partner is eu citizen.

however its much harder now because she has aids /hiv many countries do not want to take on the high expense of the medicine and healthcare. Some countries dont discriminate but you must pay tax for a business or a job for one year before you can access the public health care. 

So if we move to europe i am trying to figure out a way in my head for the first year how i can get her her meds and doctors appointments and tests etc for free until she gets registered on the public health system,as we cannot afford to pay for it,

and because she is under cd4 200 everything is so much more high risk now, other ois may appear and we need to keep the toxo and cmv
under control to.

So its pretty tough as i dont actually have a place where i am set up ready for us and have her medical needs looked after.  at the moment russia is the only place where she is safe at present.

we both want to be elsewhere especially me, i cant live in russia. so i am constantly just going through options and scenarios in my mind for example

get a home base somewhere else, where she can get all medical treatment.

or wait maybe  its safer for me to stay away from her until she is vaccinated for coronavirus and her cd4 is stronger, and for her to stay home with family.

or i come see her for a few weeks then take her for a holiday to another country, first before deciding on what we are going to do. (But this last option now i think is to high risk with her current situation and corona virus- even-though it would be the best for her mental health)

[needhope77]

i was trying to talk to her on video today, but she cant hear anymore she has a loud buzz in her ears and wrote she cant hear anything. this started several days ago and had got worse each day. the last mri came through showing she has Hydrocephalus (water on the brain) i dont know if this is the cause.

she is waiting for the nuero to see her in hospital, i dont understand why every time the doctors are so slow to react and she has to wait.

anyone know if the deafness and loud buzzing is reversable?

i am so worried she has 3 things attacking her brain toxo cmv and hyrocephalus.
her vision is blurry, she cant hear, her leg is numb and cant walk properly her arm and part of her face is numb. i am absolutely dredding what next.

 my biggest fear now is that parts of her body are starting to shut down, i am terrified she will be brain damaged and she will die a slow death, and i cant be there with her.

 i keep telling her dont worry all of this is reversible your immune system is reactivating and the meds are working, you will be out of hospital soon and i am coming to russia.

What is worst then death is her suffering and severe brain damage. i cant believe this is happening to her.does anyone know someone who has been through something like this and recovered?

on video she is starting to look warn down now and not well, she is starting to seem disconnected, she doesnt want to video call now as much, she is writing less. i am so sad i just hope she is not starting to give up.
A few months ago she seemed so healthy, as soon as she has been hospitalised she has really gone down hill.

[Jim Allen]

Hiya,

Sorry to hear that your GF continues to feel unwell. A while back over PM I had mentioned that things could seem worse before they get better and I am sorry that seems to be the case.

As for yourself, there are things in life you can't control or change. I know that's hard but that's the truth. So instead of focusing on things outside your control instead focus on what you can do.

You can be supportive and reassuring and be available to talk when she can and wants to. You can't change the outcome, but don't stress if that's on your mind, just remind yourself that she is getting cared for and is being given the treatment needed and time will tell what the outcome is.

Hugs, Jim.

[Lee82]

Hey there

Just wanted to check in and say I’m wishing you and your girlfriend all the best.

My partner was in a similar situation 4 years ago, he was diagnosed with aids in intensive care as he developed pneumocystis pneumonia. His CD4 level was 10. He made a full recovery in the end, it took a whole year before things settled back down to some form of normality.

If I can give you any advice it would be to talk about what is going on with close friends, I didn’t at the time and really struggled alone to deal with what is going on. Sending you lots of love and keep us updated.

[needhope77]

She went in to a coma and passed away on the 24th february. this is the hardest thing i have ever been through in my life.i am absolutely devastated about her death but what really traumatises me isnt her death itself, its everything that she has been through.she didnt want to tell her family and the hospital only informed her family not long before she went in the coma, while she still had some cognitive function. She only then gave me the contact number of her brother. Before she went in the coma she wrote me messages i couldnt understand, leaving voice messages that showed by the way she spoke she had severe brain damage. she then stopped messaging me and i found out from her brother she went in to a coma. No visitors were aloud so she died alone. Her family has been completely destroyed, and i have held it in and not spoken about it to anyone, i told our mutual friends and my parents she passed away from a brain tumour. the way aids destroyed  her is the most horrible thing i have ever experienced, i would not wish it on my worst enemy. i miss her dearly and i am devastated about her dying but i am severely traumatised about her suffering and the deterioration leading up to her death, the antivirals and the antibiotics couldnt save her, if only she had been diagnosed earlier on. this has shaken me to the core and i never thought this would happen. when her brother sent me photos of the funeral i was heart broken i hadnt been with her by her side through the process leading up to her death, her dying alone has crushed my soul.

[daveR]

Very sorry for your loss. May she rest in peace.

[Jim Allen]

Wishing you strength during this time.

[Tonny2]

          ojo.           Hello new hope, I’m so sorry for your loss, she fought a very battle, she was a fighter, sadly, she lost the battle. I’m sure, she was happy knowing you “were” there all that time she was in the hospital, you should feel proud of yourself because, at a distance, you were there making her stronger to fight the disease, I’m sure she appreciated you being there for her.

I just wish you, resignation and, if you can, talk to others about your experience and how important is to get tested regularly for all stds, including hiv, you might be saving somebody elses life...life goes on, celebrate her life living at the fullest...best of luck and I hope you keep being strong...hugs

[virgo313]

Very sad to read this updates. Wish u condolence. Stay strong sir.