Not just My Story, it's Our Story Part1

[abrokenman]

First I would like to say Thank You to the forum Administrators for accepting My request to join and be a part of this forum. Although just recently diagnosed and after doing a lot of research about HIV I really needed to find somewhere that I could go mentally to not only discuss Our situation but to also hear & read from others and their experiences to perhaps having some words of encouragement and support. I apologize in advance for lengthiness of this first time posting or if my thoughts and writings may offend anyone and I will break it down in parts with this being Part 1.

In May, 2016 my companion of 20+ years went from being, feeling and looking healthy to standing at Death’s door in the blink of an eye. We did not or could not think of what was wrong and what was happening. He visited his primary care doctor the First of August , they did the usual; had the basic blood work drawn, chest x-rays and prostrate exam and overall physical. Later that day the doctors office called with the lab results for the blood and said everything was normal as well as the exam and x-ray. Although the doctor wasn’t convinced that all was okay based on the condition my partner was in, he ordered a cat scan the following week and the next day my companion received the result from the scan and was told there was a very large lymphoid in his chest and possibly it could be Cancer. He was referred to a Cancer specialist and his appointment was within the next Two days. The day of that visit threw Us for a loop. The doctor did his exam, asked un-understandable questions along with reading off the list of ailments and symptoms that we typed up to help Us remember everything in order not to leave anything out. The doctor then called the Doctor directly who wrote the cat scan results to consult what was seen in the scan. He finished his call then turned to my companion and asked “ are you an intervenes drug user” WE both spoke up and said NO! He asked again, we again shouted NO. He then yelled “C’mon, don’t deny it tell me the truth, you use drugs and share needles with others. At this point I was my partners  voice His only voice as well as I am his power of attorney as he was to sick to even hold his head up. I told the Doctor We have been together for 25 years and if my partner was doing any kind of drugs I would know about it as we are always together. This doctor asked me if I can be sure of that and I said whole heartedly YES with My life as He IS my life. I summoned the doctor over to the exam table, picked up my partners arms and said “look, do you see track marks in HIS arms” “look at his legs, ankles and anywhere else you would see needle marks do you see any?” He scratched his head, answered No and said this was perplexing to him but don’t worry because he was going to do a deep excursion and find out the problem. We felt finally we will get an answer after all this time. Before we left, the doctor said he wanted more blood work to look for an answer. We prepared to walk down the hall to the lab but before we got out of the exam room he blurted out “ You are HIV “ We asked him to repeat what he just stated so He did. We were in disbelief ,not only the way he was treating Us but where did HIV come into the picture because we were there for Cancer and we asked him that. Once again He yelled “C’mon don’t deny it” we said deny what. He shouted “you are both in denial and better get right with God” then walked out of the room. As we sat in the lab waiting room we were in shock, upset, hurt & confused and we said to each other “what just happened”. My partner was then taken back for blood to be drawn and it was 12 vials that was drawn then we left.

We got Home feeling numb, confused, worn out and felt like we were just hit by a freight train. We just could not comprehend where all that came from. We didn’t eat or sleep that night. The next Morning we were still walking around in a fog wondering why did we get treated so poorly, what made the doctor emotionally attack Us like that. Could it be that I disclosed to Him we are a Gay couple –who knows. Later in the Day the doctor called and left voicemail, we thought blood results were in; instead His message was him giving the name and phone number of the AIDS clinic and said “I suggest you call and make an appointment immediately” then hung up. A week later he called back, spoke to my partner; said he had results and advised it is now confirmed my Partner was indeed HIV positive. Before he hung up he asked if we contacted the clinic, my partner said yes then the doctor said “there’s nothing I can do for you, come pick up your records and get out” and then this: “God help you, and have SAFE Sex” and hung up.

[abrokenman]

September 16, 2016

The Morning of My Partners appoint with a ID Doctor. We knew we had a long drive ahead of Us to go into the City to the clinic and we were wondering how would we be able to make it. I say this because I was the driver and I had to get him from the house to the car and by this point he was able to stand let alone walk as he had been bed ridden for weeks prior. I was able to get him into the car and the only thing that would make him comfortable was to lay the front seat back so that he would be laying. All the way to the clinic he moaned and just asked for God to take him. I chocked back tears and drove as quick as allowable to get him to his appointment.

Now, we’re outside the clinic; we looked at each other in worry not for what we may find out but of how would be treated after Our ordeal with the Cancer Doctor. We held hands, gave each other a panicked smile and said “lets do this”. I got him inside and we went to sign in. We were not even there 5 minutes when a Peer Advocate came out, called Us by name and took Us both back to His office. He explained how the day’s visit was going to go and that we would be there for 3 hours if not longer. He said that everything was going to seem like a whirlwind of information, Q&A sessions, exams and a lot more. He spoke to Us on a personal level and explained what the clinic has to offer and what role he will play in Our treatment. After spending this time in his office it was off for vitals to be taken, then came the exam with the Doctor. The exam and explaining everything in full detail was very lengthy and we were amazed how much time this Doctor was spending with Us; we’re not use to a Doctor who puts their All into a visit with Us. The ID Doc said based on the reading of the blood work from the Cancer Doctor She felt as though that indeed the prognosis was definitely HIV. She asked My Partner if He would be willing to start treatment of medication that day. He said yes, then it was off to the lab for a lot of blood work to be drawn. After that it was off to meet the Pharmacy Doctor in his office to go over and explain what each medication was, how to take them and what the side effects were. The meds are Bactrim, Descovy & Tivicay As we we’re coming out of that office a Social worker came up to me and asked if they could take me for short period of time. My Partner and I looked at each other in bewilderment as we did not want to be separated. I nervously said “yes” as We went one way and My Partner was lead in another.

I am now sitting down with the social worker in her office and She asked Me how do I think My Partner is with the diagnosis of being HIV. I told Her he was ok, she asked if I was really sure about that; I advised her that we spoke of it a lot before the appointment and we said “it is what it is, as long as he could be treated to get him back to being himself - back to the Person I know him to be. She then advised me they offer Partner testing for free and asked if I would be willing to be tested. I told Her yes as I have nothing to hide and I wanted to know for both my partner as well as myself. She handed me a oral sure swab and instructed me to swab my upper gums and sides of my cheeks, so I did for a few minutes. She then took the swab, placed it into a holder and said it would be 20-30 minuets for any result, so we talked; she explained what services they offer, explained the Ryan White Foundation and then asked Me how “I” would feel if the result was positive. I answered Her, probably in a way she did not expect. I said “well if I am Poz then both My partner & I will go through this together like everything else we gone through together for 25 Years”. She congratulated Me on being partnered for that length of time and as she was doing so she looked at the swab and said that I was showing reactors to the test then it was off to have some blood drawn. We walked to the lab and there I was back by my partners side, we sat there holding hands and in a very low tone we spoke of how amazing the clinic was and how all the personnel was so kind and compassionate. I went into the lab room had Two vials of blood drawn then it was off to meet a Counselor for another Q&A session and explanation of what services are offered to Us.

It is now time for Us to leave, knowing that the prescriptions for my partner has been sent to the pharmacy but before we left all those who sat with Us, talked to Us were now all around Us each and everyone of them hugging Us. Once more we were asked how the both of Us were feeling emotionally about what we have learned during Our visit. They asked because they knew we had a long drive back home and did not want Us to leave if we were emotionally wrecked. I guess some of them if not all had expected for either of Us or both to break down and cry. We told them we were fine, smiled, finished hugging everyone then proceeded to checkout to make my partners next appointment for 4weeks later. 

[abrokenman]

September 16, 2016 Now back at home and feeling overwhelmed confused and exhausted. We sat there for hours talking about the diagnosis, what it means for Us and Our future. There was nothing un-discussed as talked about everything and anything.

That following Monday the Peer Advocate contacted Us to ask how we were feeling and wanted to know who or what kind of support team at home we had. We told Him we were fine and that we have no support team only each other. He explained that Our story is only Ours to tell if and when we wanted to. We thanked Him for His concern and caring phone call. That same day I called the clinic and made My appoint for the same day my partner has in October. A few days later I did something I thought that I was never going to do and that was disclose Our status to someone. I called My Sister to talk, filled with all kinds of emotions from sad to angry to hurt lost dazed & confused. During Our conversation I was waiting for a lead into the topic and finally I had my chance. I said Sis, you know that for Months now my companion has been ill and we did not know what was wrong and thought it was Cancer. She said yes, I said well He is HIV positive and so am I. Her response was “Oh’ then that was it - nothing more only crickets then we ended Our conversation. I felt so horrible asking my partner how it could be that there was no questions, feedback or comforting words. He answered by saying it’s like always has been it’s just you and I only ones there for each other. How could have I been so stupid for making the wrong decision in disclosing Our status especially for the first time out the gate to someone who obviously did not care. Which is why I searched for an outlet in a forum to speak to others and share stories, people who understand and can relate. Now I have found what I have been looking for in this forum and for that I am grateful to be a part of this community.

A week later My partner received as call with his #’s, His CD# was 100 and VL 17,000. Not knowing what these number levels mean for him we only knew that a CD4 # has to be High and VL low. He was asked if He was taking his medication daily and the answer is Yes. Over the next few weeks I started to see a great change in my companion, he was coming back physically and emotionally and that put such a Big smile on my face.

October 18, 2016 Now back at the clinic for the second visit. Once again we were both greeted by ALL as they all remembered Us - as in People and not as a number. Sitting in the waiting room for less than 10 minutes the Nurse came out and called for My Partner to come back and asked Me to tag along and so I did with clipboard and all the paperwork that I had to fill out. In the exam room the usual routine questions and vitals were performed then we waited for Our Doctor. She came in, looked at My partner let out a cry of joy and gave him a great big hug. She had tears in her eyes and stated she could not believe she was looking at the same person a Month later as He now looks so much better. During His visit with Her the Peer Advocate came for Me and off to his office we went. We sat and talked, he asked if we were alright and if I needed or wanted to say anything to him so I asked some questions, but it was not all me he too shared his story with Me, at that point we were on the same level, how wonderful that made me feel. I told him that I told someone of Our status, he said great and asked how that went, I told him I only got “Oh” and he was sorry to hear that He asked if I did not mind him asking some very personal questions as to why we were there, I answered no. He stated that knowing my companion of 25 years & I seem like a very close and loving couple he could not understand how we were positive and asked if I could explain. My heart pounding and racing, feeling a rush of overwhelming flooding Me I gave Him an answer but not the “real” one and one that sounded good in my head but outside my head sounded so far fetched. He looked at Me in a puzzled way and said “Ok, I will let your Doctor know this information so She can take that into account for your analysis” We ended the discussion and while my partner was waiting to have his lab work done I was placed in the exam room. Soon, the Doctor came in, examined Me then questioned me of what I just told the advocate and wanted to discuss it deeper so that she can determine Our “window period”. What the heck is a window period I wondered. After She explained that to Me my mind and thoughts were jumbling everything together and for a moment I could not speak. All I could think of was “how stupid of me to not be honest to the advocate. Not only was I stupid for my first time status disclosure and now this. I thought for a quick moment, looked over to my partner now that he was back in the room with Us; speaking to each other with our facial expressions then told the Doctor the truth. I figured that these people were not prying into Our personal business but rather helping Us to improve Our quality of Life. Once she knew what “it” was she asked about the time frame and we both told Her it was over 10 years ago. We asked how could this disease now rear it’s ugly head after all this time. We researched early on and found that some People can have the disease in their body for 10 years or longer and not show any symptoms - how odd is that! Then on-line researching we seen that is impossible to happen so which is it.

The ID Doc said that we may never know the window period at this point and not focus on who was the first infected or how long it’s been but rather focus on the treatments. She asked me if I was willing to start the medication that day, I said yes and the prescriptions were sent. Again, I think that everyone was waiting for a waterfall of tears and emotions to flood through but again we strong minded and voiced that we are now in good hands and we are on Our way with a great medical team and treatment. So off to the lab I went with my companion by my side, had a lot of vials of blood drawn. Our Visit was coming to an end as it was just as long as the last visit was only because now I was considered a new patient. We made Our appointments for 4 weeks later then left. A week later my partner received a call from the clinic advising him of his #’s his CD4 # was 259 & VL 139 how great for that news. A few days later I received my #’s with CD4 # 118 and VL 13,000

Novembers visit. Checked in was taken back for vitals and routine questions then placed in the exam room together. Doctor came in reached her hands out to my partner held his hands and welcomed him she then did the same to me. She examined him but apologized to me that she had another patient between Us to visit. I told Her that not only am I a patient but a patient person as well and we laughed. As we sat there waiting for Her to return we talked & laughed even were making future plans. She returned and I now received my examination. She asked if I had any questions or concerns and I did. I told her I simply can not wrap My mind around the fact of how my partner was like the walking dead with all that was wrong with him but yet I was fine, looked & felt great. Got some explanation to it all and that kind of put some pieces of the puzzle together. She advised My partner he will now be on 1 pill a day and he longer has to take bactrim. She however, told me that based on all the blood work that they had taken I am not or will not be a candidate at this time to take 1 pill a day. Now mind you my regiment was the exact same as my partners, same meds same routine so how could I not be able to take 1 pill a day and asked her that. Doc said based on one of the blood test (not sure which one) that since I am of Northern European (then her eyes filled with tears and she was holding back from crying) therefore the meds I am on she feels as though it is in my best interest not to change meds and try something different. Why did She start to cry? Did she know or see something more alarming about my blood work ( *Insert my over active imagination I’m now thinking the worse) that she was not telling Me. She gave me the choice if I wanted to but said she’d be concerned of what side effects I would have as neither of Us had any side effects from what we were put on. So we just kept it as it is because I told her taking 3 pills a day is not a hardship. Our visit was way shorter than the two previous ones and we are now ready to checkout. We made Our next appointment and left for Home.

Well, that’s it - Our Story although long but true. Again, I Thank Everyone in advance in the forum for allowing Me to share Our story because I needed this, I really needed it. Along with the medial side of this journey I now feel this part of treatment is going to be very helpful for Us. I will no longer feel alone in this matter and know that there really are others who share something in common with Us. As I told My Companion each day will be a dose of medicine from my meds and a shot of encouragement from the forum!     

[Wade]

Hi Boys and Welcome to the Forums !
I merged your 3 part story into one, it will be easier for the other members to respond.
The first part I must say sounded like something out of the 80s, and was glad to hear you both had a much better experience at the clinic.
Your numbers will improve quickly with treatment and you will both be back in your normal routines in no time !
Please keep us posted.

Best, Wade

[Ptrk3]

abrokenman:  thank you for sharing your moving and informative story.  I'm glad you both are receiving the care you need and are improving day by day.  Neither of you is "broken," but are well on the mend and should look forward to continued good health and happiness in your lives.

I'm glad you found these forums.  I look forward to your future participation here and the details of your ongoing progress.

Best wishes to you both!

[abrokenman]

Thank You Wade for doing so, that's what I wanted to do is put all 3 parts in the same section but was not sure how to do that.

My First part was more like out of a Horror movie and we can only imagine how back in those days people were treated. We kind of feel as though that we will get this kind of reaction from others in Our everyday lives because of the stigma that follows being positive.

Thank you for taking your time to read my long winded babble it means a lot to Us. I guess even though the hardest thing I had to do in life was hearing my status as HIV a week before my 51st Birthday. That was not the kind of Birthday surprise I expected.

[abrokenman]

Thank You PTRK3 for your kind and caring words and for the fact that you took time out of your day to even read my very long posting. I thought even if no one ever reads it at least I got all that is in my head, down in writing and out into the universe and after I did I feel so much better.

Again, thank you,  the encouragement you just gave me has made my day!

[Wade]

You have a great attitude and are a welcome addition to our community 

[Ptrk3]

You're most welcome, abrokenman (I hope you change that name soon!).  Keep up the great attitude and use these forums to express your feelings as you continue your progress on the road to health and contentment.  I look forward to your future posts and the posts, too, of your partner, as you document your mutual progress.

[CaveyUK]

Hi and welcome.

That first part sent shivers down my spine. How heartless, callous and ignorant was that Doctor. If you have the mental strength to do so, I would certainly complain to the authorities. In my view, medical 'professionals' who act in that way should be struck off, and the seemingly frequent mentions of 'god' in relation to the diagnosis make him sound like a dangerous lunatic as well as a heartless bastard.

I read further, with trepidation, but thankfully your story from that point was far more heart-warming and it sounds like you are lucky to have such compassionate, caring people in charge of your care from this point on. That is so important.

I didn't really get the whole thing about the med switch, being 'Northern European' and the welling up with tears thing. Your ethnic background is meaningless here, and the only important thing is that you are tolerating the medication and it is having it's desired effect - which is suppressing the viral load. If it's doing those two things then unless there is a firm medical reason for switching - such as an interaction with other medication you may be taking - then there should be zero reason to switch, or indeed to burst into tears!

The good side of all this is that you have each other and are on treatment, which means that there is no reason you won't live a full, happy and healthy life from this point on. I just wish you hadn't found out in the circumstances you did....that sort of thing breaks my heart.

Anyway, sorry that you had to but happy you have joined our community

Cavey

[abrokenman]

Wow Cavey, I want to personally thank you First and foremost for taking your time to read all of My post that really touched Us and second for your kind words that gives Us more hope along with encouragement.

Yes, the Cancer Doctor was a BIG A-hole in our opinion but we both said things happen for a reason and that means if we had to get one bad apple to be placed in touch with a great bunch of medical professionals then it was worth it. Had we not been directed His way neither of Us would have been diagnosed and would have suffered longer.

We got good news Today as the clinic called to give Us Our #'s. My partners CD4 is 233 VL 127 My CD4 210 VL 1. Still not really sure what that all adds up to but we were told Our ID Doctor is thrilled.

Again Cavey, Thanks and hope to hear from you here as time goes by. Have a great rest of your Day - Take care!

[bocker3]

Welcome to the forums.  It's a great place - a true family (even with the occasional family "disagreements").  The support you will find here is amazing -- I would have had a much harder time adjusting to my "new normal" back in 2005/2006 if I had not found this place.

You're story was something to read -- I'm glad your treatment improved so tremendously upon going to that clinic.

Keep up a positive attitude (pun intended) -- it is important.  And always remember -- with these meds, the virus no longer has control, YOU DO.

Hugs to you both,
Mike

[CaveyUK]

We got good news Today as the clinic called to give Us Our #'s. My partners CD4 is 233 VL 127 My CD4 210 VL 1. Still not really sure what that all adds up to but we were told Our ID Doctor is thrilled.

It means that both of you are out of the immediate 'danger' zone of having a CD4 of less than 200 (although your doc will want to see it climb a bit more before stopping the bactrim), and you have an undetectable viral load - this means the virus can no longer do any damage to your t-cells, and you can no longer transmit the virus! Your partner isn't quite UD yet but is well on the way so will be before you know it.

Truly good news indeed

[Gladiator]

ABROKEN you should definitively be a writer! Welcome here, meds are great today and after some  phisical and emotional adjustments everything will be just routine. I got same situation, partnered with a poz. Life will go on, I barely remember I have unless that 3 seconds of pill swallowing. Our life expectation is more or less that of neg if we stay on meds. Quite smoking if u do. "I hug you both.

Gladiator

[abrokenman]

Hi Gladiator, thank you for taking your time out of your day to have read my posting and for your kindness. I agree that once we adjust to the both the physical and emotion side to all of this We will be in a better place. Thank you for sharing your story with Us about you and your Partner and We wish for your continued success. We will use this forum as a vessel to guide Us through unchartered territory to help Us along Our way and we both feel that what better place to be for support, kindness and knowledge than this forum. For the last Two Months I have felt like a flag just flapping in the wind with no purpose but now I no longer feel that way.

Again, thank you and **Hugs** to you and your partner! Have a great day.

[abrokenman]

It means that both of you are out of the immediate 'danger' zone of having a CD4 of less than 200 (although your doc will want to see it climb a bit more before stopping the bactrim), and you have an undetectable viral load - this means the virus can no longer do any damage to your t-cells, and you can no longer transmit the virus! Your partner isn't quite UD yet but is well on the way so will be before you know it.

Truly good news indeed

Thanks CaveyUK for breaking it in simpiler terms for Us. Our ID Doc defineatly wants Our CD4 # to keep climbing, my partner was advised the other day that he can stop taking the Bactrim but He has concerns about doing so. We discussed if He should still take it anyway as when asked about just having his refill on it and was told he can use that up if would like to but were not yes or no to keep taking it. As for My #'s although it was great news I can't wrap my head around it. I told my Doctor at this Month's visit that something was making me feel that taking these meds will show no improvement. Now I feel guilty about already being UD and I've only been on meds since 9/16 it's almost like I got a free pass. I don't want to take the easy road on this path I want to go through the trenches and earn my way to the point of being UD. I guess I say this because I have read other threads and see that some people it took a very long time to get to a higher ground. Either way recovery is recovery in any form.

[abrokenman]

Keep up a positive attitude (pun intended) -- it is important.  And always remember -- with these meds, the virus no longer has control, YOU DO.

Hugs to you both,
Mike

Thank you for the motivation being positive ( No pun intended) as We must have and keep a positive mind in this journey. I don't know everything there is to know yet but what I do know is that I control each and every day to adhere to taking my meds which in turn the meds control the virus so yeah, I am in control and I am at the helm driving this vessel - not the disease!

Thanks for your time, attention and support it really does Mean a lot to Us. Have a great day and **Hugs** to both you and your partner!

[TheNormalLife]

Very well put, with a few differences (but way much more coincidences) yours and your partner's story is a lot like mine, I dare to say like ours.

Writing is a great exercise to relieve the pressure of this bump in your life so keep doing it; the game is not over, just some of the rules have changed.

Hugs from Mexico,

Ray.

[abrokenman]

Writing is a great exercise to relieve the pressure of this bump in your life so keep doing it; the game is not over, just some of the rules have changed.

Hugs from Mexico,

Ray.

Hi Ray, thank you for your input and encouragement it means a great deal to Us. I agree that taking everything that is in my head and put it into writing is helpful and helps me to deal with the stress. I did not want to write in a journal as that would only be a small bit of relief, I needed something to where I am being hear; need other peoples eyes to read upon my thoughts and for feedback. Hence my avatar of the guy hammering away at the key board.

I would like to hear how Our story is similar to yours if you would not mind sharing. It could give Us some answers to many questions we have and if it would not cause you grief to talk about your situation, I am a good listener because it's not all about Us but about ALL of Us here in the forum.

Hope to hear from you again soon. Have a good day. **Hugs to you and yours**

[CaveyUK]

my partner was advised the other day that he can stop taking the Bactrim but He has concerns about doing so. We discussed if He should still take it anyway as when asked about just having his refill on it and was told he can use that up if would like to but were not yes or no to keep taking it.

It depends on the ID doc and local policy, but generally most doctors would want Bactrim (or equivalent) to be continued until the CD4 count is a little higher and consistently so. This is in part due to the variations that can be seen with CD4 count (even at different times of the day!).

I am based in the UK and started at CD4 count of 160 so had to take Septrim (which is the same as Bactrim) when I started meds. My doctor insisted I continue taking it for three months after I had registered a >200 count. I've read that others look to stop when over 250 too. As I say, it will vary depending on where you live and your clinic/doctors policies, but personally I liked having the 'safety net' of the antibiotics during this period.

Due to the above window, I actually stopped taking it when my CD4 count was >350 (six months in).

It's a comparatively cheap drug too (compared to HIV meds), so there shouldn't be too much pushback on continuing for a little while, I wouldn't have thought.

[abrokenman]

personally I liked having the 'safety net' of the antibiotics during this period.

It's a comparatively cheap drug too (compared to HIV meds), so there shouldn't be too much pushback on continuing for a little while, I wouldn't have thought.

Thanks Cavey for the informative message. That's why I like this forum because I can get info and insight that may answer things that come up that may not be on my mind during a Doctor visit. I mean after all they don't have several hours to spend on me to go over each and every detail.

I too like the safety net of being on Bactrim and when My ID Doc advises that I will not have to no longer take it I will ask Her to at least let me take it for a few more months. Although I have only been on meds since 10/18/2016 and I am not expected to go back on my next visit until January I will then see what my #'s are. Do you mind me asking something? What "is" the right or good CD4 # to have? I am so confused by all the numbers and info out there. I am still confused about my own #'s because in October my VL was 13,000 a month later it is 1. October my CD4 was 118 and November 210 so was it better to have the VL drop quickly first before the CD4 climbed higher or would that be the other way around.
 

[Jim Allen]

What "is" the right or good CD4 # to have? I am so confused by all the numbers and info out there. I am still confused about my own #'s because in October my VL was 13,000 a month later it is 1. October my CD4 was 118 and November 210 so was it better to have the VL drop quickly first before the CD4 climbed higher or would that be the other way around.

Okay I see you have your head stuck on the CD4 thing.

ill explain it and I don't think it will help but give us a shout. First thing to know is that nothing you do will increase your CD4's for any given time. Also if you messure my CD4 this morning and this evening the jump can be huge even a 100 or so. CD4 count is a crude snapshot moment.

So if you CD4 goes up or down its not within your control.

Another thing to keep in mind that some people with a CD4 count much higher than you will be sick and other people even with lower count will be just fine. I was just fine until my counts reached 72 and I was not on treatment and so started to get very sick.

Having a high CD4 counts does not mean you are sure to be healthy, illness can happen at anylevel of CD4's what is true is that the lower the CD4's the greater the risk increases for certain opportunistic infections and also sadly greater chance of death.

Don't panic however because what you can do, and controle and fight with is take you medication that suppress HIV, suppressing HIV allows the body to focus on better things, and for a lack of better wording in part "heal". It is normal but not always the case to see an increase in CD4's once treatment has started again the focus is "suppressing" the virus, the focus is not counting the CD4's.

Look in short and very crude a HIV negative person on average would have anything between 400/500 and 1500 CD4 count. So lets call that normal average range for argument sake.

So people living with HIV who have a CD4 cell count below 200 are at risk of developing serious illnesses. Hence the preventive measure of antibiotics is recommended if you are below 200 and of course taking your HIV meds to "suppress" the virus. Anything below 50 count the risk rises dramatically.

Jim

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/understanding-lab-work-blood-tests

EDIT:

Hence the preventive measure of antibiotics is recommended if you are below 200 and of course taking your HIV meds to "suppress" the virus. Anything below 50 count the risk rises dramatically.

I mentioned taking the meds as important just to note that of course not only when your counts are below 200 but irrespective of CD4 count treatment is the general recommendation for people living wth HIV.

https://www.poz.com/article/hiv-treatment-guidelines-22162-2583

[TheNormalLife]

It is said that even exercise can make the CD4 vary a little bit, same with the time of the day; some researches have even gone beyond saying that a depression or feeling a little blue can have an effect on the amount of little good guys. As Jim said, don't focus too much on the numbers. The only thing that you can do in order to have them go up is by taking your meds which in turn will suppress the virus and stop them from killing your "soldiers".

When recently diagnosed I even bought a "superfoods" book trying to reinforce my immune system. I started cooking with coconut oil, eating seeds like a crazy bird, and adding kale to my salads despite it tastes yucky. After my first good labs I stopped focusing too much on that; yes, one has to eat healthy but the best thing to do when HIV infected is taking your meds daily without a miss and start treatment soon. Do that and you'll be fine.

It is very unlikely that you know your pre-infection CD4; research has shown (told so by my doctor, sorry if I can't provide a link) that some people with "normal" CD4 of 600 are just as good as those with a natural CD4 of let's say 1200 or less. Sometimes is about the quality of those soldiers rather than the number.

Oh yeah, that brings another topic, if, only if you are really into CD4 statistics, then it would be best if you look a little bit more in the percentage rather than in the absolute number.

You will be all right buddy!

Ray

[abrokenman]

Oh yeah, that brings another topic, if, only if you are really into CD4 statistics, then it would be best if you look a little bit more in the percentage rather than in the absolute number.

You will be all right buddy!

Ray

Thanks Ray for putting things into words that helps me to figure all this out. I guess I'm not hell bent on the actual #'s as I am (I guess) the up & down roller coaster effects per say of this situation. I never knew that once a Person's Cd4 went under 200 ='s they now have AIDS until I have read a lot on here. I remember in September during My Partner's ID Doc visit when She said "yes, your partner has AIDS but we will get him back to normal". I was shocked, I thought we are here to discuss HIV infection not AIDS as I thought that that was the last final extreme situation to face. I asked Her explain to me how can a Person go from now being AIDS just back to HIV. She never did actually explain that and I feel, because you don't, can't & won't go back to that level. Then I too tested Positive and My CD4 was under 200 so I knew I have AIDS and I sit and wait for something to sneak in and attack My system regardless of taking meds every day & I will succumb to Death via AIDS even though I did everything I have been told.

I get it... take your meds is like when your mother would tell you to eat your veggies (it's good for you). Well I really don't care for a whole lot of veggies, some I like most I don't. I do, have been and always will take my meds daily but I ask why should I because even doing the right thing may still not be enough and perhaps one day the disease will still take me, regardless.

So I'm not going to focus on #'s, if the Doc says they are good, climbing and improving to where they need to be - then so be it. What I'm going to try to focus on is putting ALL and everything I can in perspective to get a better grasp on "it" in order to clear the fog in my head, rid myself of daily worry and ditch the endless shame that I am carrying on my shoulders.

Again Ray, thanks for jumping in and putting a spotlight on the subject. Have a great day and take care.

BTW: I chuckle every time I see your Avatar Pic. I believe is from Airplane. Just a funny pic like that can brighten Ones day!

[CaveyUK]

Don't get hung up on the AIDS thing too much.

In real terms, AIDS is a syndrome - a number of symptoms/illnesses that can happen when the immune system is very low, as a result of HIV infection.

In some parts of the world (like the US), the diagnosis of AIDS is made based on CD4 count being under 200, even in the absence of these symptoms. In other parts of the world (like the UK), a diagnosis is made only if one (or more) AIDS defining illnesses are present.

The term 'AIDS' is seemingly being used less and less by doctors these days.

The treatment is exactly the same regardless of the starting point, as is the outcome. Ie. suppressed viral load and CD4 count that should climb back up. The important thing is to get into a position where your immune system is in the normal range and you are not at risk of AIDS illnesses anymore.

[leatherman]

but I ask why should I because even doing the right thing may still not be enough and perhaps one day the disease will still take me, regardless.

ummm, that's not how it works. Taking meds IS enough and one day when you do die (because we all do) it won't be from AIDS 

[JosephP]

Do you mind me asking something? What "is" the right or good CD4 # to have? I am so confused by all the numbers and info out there. I am still confused about my own #'s because in October my VL was 13,000 a month later it is 1. October my CD4 was 118 and November 210 so was it better to have the VL drop quickly first before the CD4 climbed higher or would that be the other way around.

Don't be hung up in numbers... I was and my ID doctor told me to STOP reading and listening to everything that was on the internet! She said... "You are making yourself sick..." Your are living with HIV not dying from it! As I said my CDs were 198 and VL 78K when diagnosed. With the meds the VL started going down and the Cds up.. Then, earlier this year, she told me that she was going to check the CDs only once a year (They had climbed to 500)...I panicked... I wanted my CDs counted!!!! She said, that now, it isn't needed every three months. Then she dropped the other shoe... She wanted to see me only 3 times a year instead of four... Believe me... I still want to see her every three months and have my counts taken... It has been a bit disconcerting.. I went last in October and my next appointment is not until the end of next February 2017!!! But I guess I have advanced to a point in which she is satisfied with the progress.. And, my friend, you will be at this point soon!  

[abrokenman]

I went last in October and my next appointment is not until the end of next February 2017!!! But I guess I have advanced to a point in which she is satisfied with the progress.. And, my friend, you will be at this point soon!  

Thank you JosephP for explaining how you felt about the whole #'s thing and the fearful concern that you had from it. I know I should not do all the reading of the studies out there, the this one says this that one says that and before I knew it everything was on my plate ALL at once at it overwhelmed me to the point that my eyes hurt from all the reading and I felt physically exhausted. So now I do not read as much, I look to members on here to explain things and I see through other peoples experiences of how they have grown to high levels of confidence and not get down over the matter.

I am glad to hear that you are now at a place to where you don't have to go in to see your Doctor as much as they are confident that you are on the right path! So I guess taking 2 pills a day (everyday) and only having to go in every 4-6 Months to have your blood checked is not that overwhelming to handle. Keep climbing higher and be the best that you can be Joseph and live Life to the fullest. Have a great day and again, thanks for your input in the matter.

[leatherman]

So I guess taking 2 pills a day (everyday) and only having to go in every 4-6 Months to have your blood checked is not that overwhelming to handle.

this is not the 1990s with less effective meds. Here is the late 2010's after over 35+ yrs of dealing with the science of HIV, the meds are very effective and the guidelines for treatment have changed. Over a year ago, HRSA (Health Resources and Services Administration) HAB (HIV/AIDS Bureau) (which is the federal agency which administers the RW program) changed the guidelines for VL and CD4 testing. Not only is less testing per year recommended because the meds are that effective; but less testing uses less resources saving consumers and agencies money.

CD4s are highly variable and can change by 100 pts within a single day. When CD4s are 200 or less, a patient is susceptible to opportunistic infections. CD4s are NOT a measure of "health" but simply a snapshot of the immune system at the time of the blood draw. Some people with only 300 cd4s remain healthy, while others, with even over a 500 count, experience illnesses (just not opportunistic infections). Unfortunately there's no way to increase cd4 counts except to suppress the HIV and allow a patient's immune system to recover to whatever level it will recover to - and that level is based on a patient's genetics  (which is why the "normal" range is so wide from basically 400-1500). Without a pre-HIV infection cd4 count, almost all patients have no guide for what their baseline "normal" count was and to what level their cd4s will eventually rise as this is based on an individual's genetics. As you can see there is a lot of variability to cd4 counts and except for the above/below 200 mark, we know now after all these years that there is little diagnostic use to the cd4 count as it climbs above 300

There is currently no way to measure how strong/effective a person's immune system is and that is not what the cd4 count reflects and why the cd4 count is not as important once a person gets above 200, and even less important when the count reaches 500 or higher.

The most current HRSA/HAB guidelines recently extended the testing range for those who are virally suppressed to once every 6 months in a 24-month period. The word is that the next update will extend VL testing to once a year with cd4 testing optional for PLWH with consistently suppressed viral loads.

the current guidelines are:
After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)

These guideline changes reflect the science of monitoring patients (who are and are not virally suppressed) to decrease the lab visit burden to patients and the associated costs of those tests (lab work and doctor appts). While that's a win-win for patients (less trips to the doc, less jabs with a needle, and less money spent to health care), in cases where these services are covered through a state's ADAP or Medicaid program, these cost savings will help states to provide more services for even more people.

Of course, any clinical changes or med changes puts a patient at a different testing level with has more frequent testing based on the situation until patients are once again virally suppressed for the recommended length of time.

as a single example of what I wrote above, I offer my own situation. With early meds it took me nearly 12 yrs to reach and sustain undetectable while my cd4s rose from 5 to 250. In the years following, my cd4s rose to 300 and held there for a decade. Now within just the last two years, my cd4s have begun to register more often at a 400-level. While my cd4s were under 200, I was hospitalized several times and remained very ill. Once reaching 300+, I became quite healthy and have rarely even had as much as a cold. With my great-grandparents and grandparents all living into their late 80's and very late 90's, maybe I've inherited a pretty strong (if vastly reduced by so many years of unsuppressed HIV) immune system Perhaps one day they'll develop a test for the strength of a person's immune system and we'll never talk about cd4s again

[Tonny2]

        OJO        HI ABROKEN MAN...IT TOOK ME SINCE MY DIAGNOSIS IN NOVEMBER 94 TO MARCH 2007, DO THE MATH, TO GET AN UNDETECTABLE READING...I STARTED WITH A CD4=20, NOW, AFTER 22 YEARS SINCE MY DX AND INFECTED IN 1987 (BLOOD TRANSFUSION) , 29 YEARS LIVING WITH HIV/AIDS (TWICE WITH AIDS), MY CD4= 624, MY CD4%=32 AND AFTER 10 YEARS ON THE SAME "SALVAGE TREATMENT" I'M STILL UNDETECTABLE...MY NEXT BLOOD WORK WILL BE IN JANUARY 2017, I WILL KEEP YOU POSTED...CHEERS, BE STRONG, AS LEATHERMAN MENTIONED, IT IS NOT THE 80S OR 90S, MEDS ARE GREAT...BEST OF LUCK, I'M SENDING YOU  A BIG HUG RIGHT NOW, I THINK THAT'S WHAT YOU NEED, I HOPE EVERYBODY HERE SEND YOU SOME HUGS AS WELL                                    OJO     

PS @LEATHERMAN, MAN, I READ YOUR STORY AND IT SEEMS LIKE I READING MINE IN A WAY, I'M GLAD YOU DON'T HAVE VISION PROBLEMS...HUGS ON YOUR WAY TOO

[JosephP]

I am glad to hear that you are now at a place to where you don't have to go in to see your Doctor as much as they are confident that you are on the right path! So I guess taking 2 pills a day (everyday) and only having to go in every 4-6 Months to have your blood checked is not that overwhelming to handle. Keep climbing higher and be the best that you can be Joseph and live Life to the fullest. Have a great day and again, thanks for your input in the matter.

You are quite welcome. Your diagnosis has been very recent and you are still reeling from it. That doesn't mean that I am free of any throwbacks and despair.. Once in a while the thought of being poz come to mind and you start conjuring of what should have I done to prevent this... Why did I do this or didn't  do that... But you come here... Peruse... And see the light... Others have done it and survived it, why not me.. Why not you? We are all survivors.. Some long term... Some medium term and some newly guys like yourself.. Yes, live life to the fullest...

[abrokenman]

You are quite welcome. Your diagnosis has been very recent and you are still reeling from it. That doesn't mean that I am free of any throwbacks and despair.. Once in a while the thought of being poz come to mind and you start conjuring of what should have I done to prevent this... Why did I do this or didn't  do that... But you come here... Peruse... And see the light... Others have done it and survived it, why not me.. Why not you? We are all survivors.. Some long term... Some medium term and some newly guys like yourself.. Yes, live life to the fullest...

Thanks JosephP for your input and yes I am still reeling from "it" as I guess it is going to take some time for the numbness of it all to vanish. What I do take comfort in is hearing from and speaking to others who share the same thing in common of my own situation. I really commend People here who have pioneered the way from early on that give testament to how far they've come in this battle, to where things were way back then to where things are now. I never would have thought that I would hear from so many people who are still here to testify the miracles of new and improved meds and that have gained ground to live a very healthy and productive life. If the veterans in this forum can stand and exclaim their journey's to say "hey, we've come so far and are moving forward in this movement" then I some day too will be able to join forces and speak as a long time survivor. 

I wish you well and hope that your journey is smoothly traveled and that I may be able to learn from your thoughts and input through out Our forum visits. Have a great day and keep putting One foot in front of the other and remember when you look back and don't see any foot prints, know that you were carried over the rough spots in life. Take care. 

[RossH]

Hi guys

The reaction your doctor had was similar to mine this past April. He's been my  Family Practice physician for 30 years but when I came into the office after taking the home test for HIV which was positive almost immediately after swabbing my gums he was not understanding or kind that day. He accused me of taking intravenous drugs and demanded to know which ones. I told him I had unprotected sex with other men so he would stop accusing me of IV drug use.  He nor the other doctors in the practice are very supportive. My ID office is wonderful and supportive but I plan to find a new Family Practice physician.  I didn't know healthcare professionals could be so uncaring.

Fortunately you guys have each other.  I always had a difficult time accepting homosexuality. So I lived a double life and now this happens. I was diagnosed April 2016. My CD4 was 880 and VL 64800. I started Triumeq in May. 10/28/16 my VL 46 CD4 1473. 

So good you found this forum. Best Wishes

[abrokenman]

Hi guys

The reaction your doctor had was similar to mine this past April. He's been my  Family Practice physician for 30 years but when I came into the office after taking the home test for HIV which was positive almost immediately after swabbing my gums he was not understanding or kind that day. He accused me of taking intravenous drugs and demanded to know which ones. I told him I had unprotected sex with other men so he would stop accusing me of IV drug use.  He nor the other doctors in the practice are very supportive. My ID office is wonderful and supportive but I plan to find a new Family Practice physician.  I didn't know healthcare professionals could be so uncaring.

Fortunately you guys have each other.  I always had a difficult time accepting homosexuality. So I lived a double life and now this happens. I was diagnosed April 2016. My CD4 was 880 and VL 64800. I started Triumeq in May. 10/28/16 my VL 46 CD4 1473. 

So good you found this forum. Best Wishes

Hi RossH,

Thank you for sharing your story, I'm sorry to hear that you are dealing with this situation but glad that you have joined the forum for support and to share what we all have in common. If you strip away a Person's background, Ethnicity, Religion, Sexuality what is truly there (always has been, always will be) is a Human. We all come from walks of different Life but that does not give anyone the right to treat others as less of a Human.

I truly am sorry that you had to experience such a horrible reaction and unfair treatment from a Doctor that you have had a 30 Year relationship with - I'm sure that really shocked you as you would not have expected that type of reaction. My guess is your Doctor knew you to be a straight Man who did not give any signs of being bisexual so they probably thought the only way for you to be HIV was through being a Intravenous drug user. Making accusations like that is a very ignorant assumption on His part but when you were honest and told Him the real reason of why you are HIV His judgmental and biased thoughts about you kicked up several notches hence the unprofessional treatment. I'm glad that you no longer want them as your Primary Doctor and I hope you find One who is very kind & compassionate. Fortunately MY ID Doctor said that She would love to be MY primary Doctor as well (even though She is not local to where I live) and with much thought I decided to make Her My only Doctor. It's such a shame that there are Doctors and other Health care professionals that are not very professional as it is their job to treat patients not judge them.

I know what you mean about having a difficult time accepting Homosexuality as if Life is not harsh enough but to be criticized, ridiculed and judged for what you do sexually is just wrong. Someone's sexuality is only like 1% of a Person's character of "who" they are. No one should have to be labeled or pigeon holed into specific category.

I hope to see you around here in the Forums and to talk if you just need someone to talk or vent to. Have a good day. Take care.