POZ Community Forums
Main Forums => Living With HIV => Topic started by: DANIELtakashi on December 04, 2014, 07:33:41 am
-
Greetings from Japan.
I was diagnosed pos. having PCP pneumonia in January this year.
My viral load then was 60 and having started medication, it is now 300.
My question is whether ART or HAART is effetive enough. And I am worried because I came to the
Stage of AIDS. Will my life be shorter than that of those who were found just HIV pos.?
Are there many who have lived long after having PCP ? Thank you .
-
Welcome to the forums . I had PCP and low cd4 counts and recovered from it ... Its been over 30 years ago since I had pcp and I am going strong and plan on living a long life unless I get hit by a bus or something . I'm not special so if I can do this you can too .
-
Thank you, JEFF san. Arigato.
It is ten p.m here.
-
Ohayou Daniel!
it's morning here in the States
I'm pretty sure in your first post you meant that your CD4 count started at 60, and has climbed to 300 on meds.
If that is was your meaning... that is GREAT news!
CD4 and VL (viral load) should be going in opposite directions. A CD4 count of 300 is solid and you can feel very good about that. You are winning.
Your viral load hopefully has gone down on meds.
I have also had PCP. Nothing fun about it, but it can be beaten. I recovered, and I do not plan on dying from AIDS.
Welcome to the boards. Which island do you live on?
-
Zach san.
Yes. I meant CD 4, not viral load. Gomen and arigato.
Thank you.
-
Zach san.
I am in HONSHU island. Tokyo.
-
no need to apologize, just trying to clarify
you'll very quickly exhaust my language skills :-\
I've worked in aviation for many years, spent a couple weeks setting up a maintenance shop at Narita. It was awesome, I got lost every time I tried to go anywhere. I hope to return one day.
I would love to complete the Shikoku.
-
Zach,
Thank you. I will try to keep good communication with my doctor.
I used to fly on NORTHWEST from NARITA but now on UNITED or DELTA .
-
I just celebrated my 31st year of living with HIV. My lowest cd4 count was 5. after all the years my normal range of cd4s is still only between 300-325. But it has been 18 yrs since I was last in the hospital with PCP (I have been hospitalized near death with PCP twice). These modern meds are awesome!
Clearly your numbers are already recovering faster and should end up much higher yet, so you really have no worry about PCP or a shortened life. Stay on your meds, work hard, and save up for a happy, healthy retirement/old age. ;)
-
Leatherman,
Thank you very much for your encouraging words.
I have been mentally down since I was discharged from the hospital in January but now it is time to stand up. ありがとうございました！
-
One more question. Are we people with AIDS more prone to
Some types of cancer?
Thank you .
-
Yes, I know lymphoma and kaposi sarcoma are a couple.. don't know about others.
-
Almost 2late,
Hi. Thank you.
Greetings from Japan .
-
Your welcome Daniel.. Try and not worry about cancers but be vigilant of any unusual symptoms and pains and report them to your doctor... Stressing too much will not help your health but taking your meds and following the doctors advise will ;).
Greetings to you also from Florida :)
-
Once again, thank you, everyone, for your comments.
We do not have sites like this in Japan and I reallly appreciate its existence. We in general still have an old image of this disease and tend to feel hopeless.
Now I am beginning to see I can live.
-
Once again, thank you, everyone, for your comments.
We do not have sites like this in Japan and I reallly appreciate its existence. We in general still have an old image of this disease and tend to feel hopeless.
Now I am beginning to see I can live.
You can do more than just live you can thrive and live a rich full life . Plan your life like you are going to live forever .
-
Reading the comments from different people, I have the impression that doctors in the USA are more friendly and give you a lot of info. Ours here are in general very quiet.
I got out of the hospital ten onths ago. Could.anyone tell me what form of physical exercise my body is ready for? Just walking and a bit of running? How about swimming? Arigato .
-
Reading the comments from different people, I have the impression that doctors in the USA are more friendly and give you a lot of info. Ours here are in general very quiet.
I got out of the hospital ten onths ago. Could.anyone tell me what form of physical exercise my body is ready for? Just walking and a bit of running? How about swimming? Arigato .
I have no idea how doctors differ between countries and cultures. I suspect they are likely to be similar. I would say 75% of the doctors I've had are very dry and don't speak much. Many here complain about many docs not having a good bedside manner. I have a doc in the family. He is very dry. He often comes off as not being friendly, even though I know he doesn't mean to come off that way.
As for info, I have learned just about everything here, on other sites, and reading info-- like the Lessons part of this site. I will discuss many things with my doctor, and I get a blank stare. He will say, "I haven't heard that." I should point out that I think my doctor is probably different from many. He works at the HIV clinic only on Monday afternoons. It just seems like some extra cash for him. My point is I would bet most of us here have learn more on our own, than we have from our docs. I could be wrong.
About the exercise, I don't know what your current health situation is. I would assume you've recovered from PCP? It seems like your body would tell you what you can do. How do you feel? Do you get fatigued easily? I assume you walk there, as Tokyo is similar to NYC. Do you get winded and exhausted? If you haven't done any running since being ill, then you could run around the block and see how that goes.
-
I am new to this forum and am participating from Japan.
I got PCP earlier this year. I am on medication and physically OK now. I njust blame myself for having caught this disease and feel depressed. My issue is how i can get back future hope. Any psychologist or psychiatrist does not help. All I think about is that I might get other complications along the way and die. I would like advice , especially from long term people. Thank you.
-
Dan, I'm not long term, I'm like you, dx in january with 13 cd4s, now 125, not great but I'm still here, I still work and I will get better so will you.. Do you have anyone to talk to in japan like family or friends?
-
Dan, I'm not long term, I'm like you, dx in january with 13 cd4s, now 125, not great but I'm still here, I still work and I will get better so will you.. Do you have anyone to talk to in japan like family or friends?
Hi. My family knows and two American friends living here do.
Do you think docs are telling the truth? My doc says it is a chronic disease now. Is it the same in America? I have rash on my head and my hair gets greasy, which drives me nuts.
-
Yes, they are telling the truth, its the same here in the usa.. I have issues also my face looks a little swollen by the ears but these are little things compared to the pcp :(.. You should try not to worry, it doesn't help.. Find the things you like to do and do them, I love cycling so I always find some time to ride my bike everyday except when it rains, this relieves stress for me and I'm grateful to be able to do this.. Find a friend, hug them, cry on their shoulder if you must, this also helps but remember life goes on and we are very fortunate... Tell you doctor about the rash, maybe he can give you somthing for it.
-
Oh. How difficult it is to live now! Have to find a way.
-
tendnlou2
Thank you for your comment.
I am a little relieved to know that doctors say the same thing. Maybe I should believe what my doc says and trust him. Thank you.
-
I moved your new thread into your old one because there are no need to have 3 threads on the same subject . Thanks for your cooperation
-
Jeff,
Now it is Sunday morning here in Asia. I thank you everyone, for your comments and
for welcoming me so warmly. There is no such great site in my country and I really appreciate its existence. Thank you.
Sorry for going here ad there - I did know the system well.
-
You are most welcome and I am happy you found us .
-
As is mentioned in my introduction I am joining from Japan. Good morning. I went to.the hospital this morning for a regular check. My doc said I can live the next thirty years. I am fifty and found positive having PCP. It is good news but can I believe it? Is the medication effective for everyone?
I would like to hear your ideas. Thank you .
-
Why do you keep asking the same question over and over. What will it take for you to accept the answer given to you by us and by your doctor? HIV medication is effective for anyone when he is adherent. You live in a rich country with great health care. You need to have some faith and relax a little bit.
-
As is mentioned in my introduction I am joining from Japan. Good morning. I went to.the hospital this morning for a regular check. My doc said I can live the next thirty years. I am fifty and found positive having PCP. It is good news but can I believe it? Is the medication effective for everyone?
I would like to hear your ideas. Thank you .
ojo Hi Daniel....I just celebrated last week, 20 years of being diagnosed with AIDS, with a cd4 of 20, started treatment in Junuary 1995, ntreatment failure for five years, like you, I got PCP when dx, I got three more episodes of PCP during those five years of treatment failure, I was 32 years old when I was dx, now I'm 52...so, if you take your meds the way they are prescribed, you will be 70 if you use my same escenario, right now, your meds seem to be working...please relax and keep living your life, dnjoy it...I hope this helps you to get a peace of mind, I'm mexican, I think for a japanese guy like you, the meds will work too...hugs ojo
-
Hello Daniel, I see you are having a hard time believing when people tell you your going to be fine and live a normal life.. Maybe you should seek out others in you area who are HIV positive like yourself.. I see there are support groups in Tokyo.. Hope this helps..
http://tokyo.angloinfo.com/information/healthcare/support-groups/
-
Good morning from TOKYO Japan. Sorry but I did not anseer your messages sooner. Thank you for your kindness to me, everyone. Now I feel better mentally.
Arigato .ありがとうございます！
-
Hi from TOKYO again.
I joined a local group of hiv positive people in Japan the other day. I communicatef with several people. In our country the info is limited and many people want to know if the present med is all that we can expect or there will be more in the future. Does anyone have any ideas? Thank you .
-
Here is a link to the current medications . You can also search in our treatment section .
http://www.aidsmeds.com/list.shtml
-
Hey Jeff ;D, don't forget to point out the whole LESSONS (http://www.aidsmeds.com/articles/Introduction_4702.shtml) section (it's under TREATMENT in the dark gray menubar up above on this page). Nearly everything anybody could ask about HIV is somewhere in those lessons. ;)
Read through some of those lessons Daniel. ;) Being a more knowledgeable patient will not only make you a healthier person; but a happier person too. And being happier can make you healthier, so it's a win-win situation to learn some more about HIV. There's a LESSON INDEX menu on the right side of that page, if you want to jump around some in the topics.
-
Thank you , Jeff and leatherman.
ありがとう！
-
Good morning from Tokyo.
Now it is noon here. It is the next three hours that most of the transpacific flights from here for the US leave Tokyo and I wish I could get on one of them to fly there today!
Thank you all for answering my questions and leaving comments. Tomorrow I will visit the hospital and have my CD4 and VL checked after two months. Before that I would like to know one thing. My CD 4 has risen from 60 to 280 - 300 for the past ten months. One article I have just read says that the cells that have lost their memories are not strong enough to combat OI and that makes me feel anxious. Is it the common idea? THANKS.
-
CD4 above 200 is protective. Antibiotics are stopped over 200.
It is true that a rebuilt CD4 system is not the same as the original pre-infection. But it still works. Anyway, its the one you have now.
If you had CD4 such as ABCDEFGHI etc.
Then an infection can permanently wipe out some of these fighters, say C E G etc. When your system rebuilds it doubles up on the remaining ones, to become ABBDDFFHI etc. Thats a rough model. Im not sure of the technicalities as to how the remaining assortment manages to fight diseases but the final sum is it does.
-
mecch,
What a clear explanation!
Thank you very much. I have gotten lots of info so far.
-
That the explanation my first ID doc gave me. I hope its accurate enough.
I stopped reading about the technicalities of HIV a few months after my diagnosis.
Its a bit of a pity you can't get more feedback from your Japanese docs. Don't hesitate to post such things here because someone should have a good answer eventually.
Docs in Switzerland don't have a long time to spend chatting but they do their best and there isn't much power-distance in the relation, here, so the exchange is more professional to professional and quite frank and easy. But they have to bill by minutes and have to keep the patients moving through on schedule so it takes awhile to really add up contact hours with one's doc.
-
meech,
Thanks. Danke Schon! Ich freue mich!
Yes, I will keep track of this site.
-
I would guess there is some concern that rebuilt immune systems without enough variety might show their weaknesses on such things as cancer as the years roll on with a controlled HIV infection. But we are stuck with what we got after diagnosis and treatment. Theres a lot one can do to minimise. I would guess its important what we eat - the quality. And exercise and mental health. Supposedly its very important for all aging men (poz or neg) to keep having orgasms, this can really mean a lot for longevity and fighting diseases. Also the regular screenings that a good health access should make available - colon, anal, skin, etc.
-
meech,
Thank you much.
-
I have just come back from the hospital.
My CD 4 was at 290 and my VL was at 20 just. My CD4 does not go over 300 easily but my doctor said that there was no problem. I told my doc that I would really need to live for the next ten years so that I could take care of my parents and he said that
I would. My hospital is in the east of Tokyo. if you have been to Tokyo, you might know that it is near the Edo Museum and the Sumo Stadium. Thank you for your help all the time.
-
I have just come back from the hospital.
My CD 4 was at 290 and my VL was at 20 just. My CD4 does not go over 300 easily but my doctor said that there was no problem. I told my doc that I would really need to live for the next ten years so that I could take care of my parents and he said that
I would. My hospital is in the east of Tokyo. if you have been to Tokyo, you might know that it is near the Edo Museum and the Sumo Stadium. Thank you for your help all the time.
ojo great Daniel, good numbers, don't listen to your doctor, you will live mor ever, just take care of you and you will be fine...congrats again....arigato ojo
-
Tonny 2
Thank you .
-
Hi,everyone. We are having cold weather in Japan.
As I mentioned in my previous message, my CD 4 count was 290 yesterday. Now my head skin and face are greasy. Is it because of the medication or is it because my immune level is still low?
Anyone there that had the same problem? I forgot to ask my doc.
Thanks.
-
Greetings from TOKYO again.
I am not supposed to write on the LT FORUM, so I am here again. The HAAART started in 1996 here, too and almost two decades have passed. People say that the advancement has been awesome. What is the prospect for the next years in the USA in terms of the medical debelopment?
My doc only says that whatwe have now is what can be the best. Please keep me updated if you have any info. Thanks.
DANIEL
-
Here is some reading for you . http://www.poz.com/archive/currentNews_1.shtml
-
Thank you, Jeff. I have read some of the articles.
-
Thank you again, everyone, for your constant help. I know that many of ypu are in the USA . Of course i am aware that meech is in SWITZERLAND. Today I saw a UNITED AIRLINES 747 take off from our local airport and thought of you all. Now I am calming down a bit. From TOKYO
-
The Japanese version of this news was just reported on TV here.
Hope this will help us. ( December 20th, evening here)
http://www.prlog.org/12402789-immune-response-biopharma-inc-files-bla-with-the-fda-for-remune-hivaids-vaccine-marketing-approval.html
-
GREETINGS FROM TOKYO.
I always thank you for your help and support for me.
Now I have a question to those who have been positive for several years.
My CD4 was at 60 when I was found to be positive with PCP in January and now it is at 300. My question is how high my CD4 number may go up with the medication. The information here says that it cannot be expected to go high when it has once reached very low. Is it always the case? THANK YOU.
-
The important thing is maintaining a undetectable viral load and then in time your cd4 will rise . It took me 10 years to get my cd4 count above 450 . You cd4 count of 300 means your meds are doing the good work and that you are going to be OK, they will continue to rise if you stay adherent to your meds .
-
My question is how high my CD4 number may go up with the medication.
There is absolutely no way to know.... nor does it much matter. There's really not much you can do to help your immune system recover. All you can do is wait and observe the numbers, so don't fret too much. ;) :)
1) "normal" cd4s can range from 400 to 1200. They can easily change by 100 points within any given day (so your 300 count could quite easily already be 400)
2) you, like most every one else, probably never had a cd4 count done BEFORE you were HIV positive, so there is no way to know what your "normal" baseline cd4 count was. (Keeping that in mind, you may already be back to "normal" ;) )
3) there is no set amount of tcells that are optimal for good health. It all depends on genetics and how "good" your immune system is. Some people are quite healthy with no issues at 300, while others deal with multiple problems at 1200.
4) the key is to get above 200. Below 200 seems to be the level at which opportunistic infections "can" occur.
5) never ever, ever care about what a single test result is. Because cd4s fluctuate so much, you should always consider the TREND of at least 3 tests spaced out over 3 to 6 months. Is your trend UP or DOWN? That's all that matters
-
by the way, for me it's been 22 years of meds, and my cd4s just barely hang around 325. I haven't been back in the hospital with PCP in over 19 yrs. In all that time, I've had two colds, 1 bout of flu, and 4 days when I ran a fever. So I'm pretty dang healthy with just 300 cd4s.
-
Thank you , Jeff and leatherman.
-
For me too 22 years of medication. The last time I was hospitalized with an OI was in 2001. My CD'4 were in that period immeasurable, with VL way above 3 million. Around the beginning of 2002 my health started improving, and my CD'4 started to climb. I have been constantly undetectable for over 12years, and 10 years ongoing with CD'4 around 1300. Doing well on Truvada, Norvir & Prezista.
I hope this gives you some perspective and hope ;-)
-
Grasshopper,
Amazing. Thank you.
May I ask how.old you are.
-
52yrs ;)
-
Greetings from TOKYO again.
I am not supposed to write on the LT FORUM, so I am here again. The HAAART started in 1996 here, too and almost two decades have passed. People say that the advancement has been awesome. What is the prospect for the next years in the USA in terms of the medical debelopment?
My doc only says that whatwe have now is what can be the best. Please keep me updated if you have any info. Thanks.
DANIEL
ojo Hi Daniel, it seems to me that you are worrying too much about the future, I think you should live everyday as it was your last, I've been doing it for the last 20 years, even tho my doctor after my dx, told me that I'd live just two more years...so I invite you to live your life completly, forget about HIV for a bit, just take your meds, and keep enjoying life, just a thought...wishing you the best...hugs, from the great sate of Ohio in the USA....ARIGATO ojo
-
Tonny
Muchas gracious.
So you are in Ohio. I have been to Cleveland .
-
ojo great Daniel, I live close by, next time if you come to Cleveland, give me a ring... 8) hugs ojo
-
i lived in Cleveland for 4 yrs before moving down to Canton (50 miles south to open our pet store) for 19 years. I left because I was tired of blizzards and missed good barbecue. However, even though South Carolina BBQ is awesome, I think I would rather live with the snow that with these crazy tea-party rebels. ;D ;D
the moral of this story is that it really is a small world after all :)
-
Hi. Mike,
You always encourage me a lot. Thank you .
-
Hi. Many of you have commented and thank you very much. In Japan, about thirty percent are diagnosed with one or two Ols. How about in the USA?
Do many people go and get tested at an early stage?
-
Hi Daniel, hope you have been feeling better these days.. Sending you greetings from Fort Lauderdale, Florida 8)
Frank
-
Do many people go and get tested at an early stage?
Nationally in America, about one third of people who test HIV positive find out because they have been sick enough to have presented at an emergency room/hospital - where they are most often diagnosed with AIDS. In several states in the South, rates of new HIV diagnoses are much closer to 50% also being diagnosed as AIDS. (these days over half of all new HIV cases are in the Southern states where HIV is no longer so much a "white, gay man" disease but a disease of the poor and blacks - especially woman) In these states, AIDS death rates are also much higher (because of late diagnosis, brought about because of stigma) - often rivaling or surpassing the rates of some 3rd world countries.
so while the rate of early testing has risen slightly, the vast number of HIV positive people in America are diagnosed well into the infection; and increasing in frequency, the majority are bring diagnosed very late - which sadly contributes to the still too-high rate of AIDS deaths in the States.
-
Do many people go and get tested at an early stage?
back in the day, people often didn't get tested because what was the point? When there weren't any meds and all your friends were dying around you, testing only let you know that the end was coming for you too. :(
However since I didn't die way back then, I just happen to be celebrating my 22nd AIDSaversary today (12/26). ;D It took two weeks after having blood taken, and for Christmas in 1992 I got a diagnosis of AIDS! While I had a lot of bad years between then and now, I sure am glad to still be alive and kicking all these years later. The credit has to go to the meds, my dogs, my Ohio doctor, and having a positive attitude. WooHoo! :D
Just hang in there Daniel. In some time, it'll be better and you won't be as worried about HIV as you are in these early days. It'll just become another part of your life. ;)
-
Today, testing and entering into treatment means you are no more infectious
The epidemic stops where people use protective gear and ,those, unfortunatly infectected have the means to say: the virus stops here because i treat myself
Mandatory testing is an idea that may find its way back into the arena
Eric ( uninfectious for the last 5 years )
パリから
-
Leatherman,
Thank you very much for the clear explanation.
The percentage is almost the same here.
-
Eric,
Wow. You know my language. Thank you and merci.
どうもありがとう。パリなんですね。
(You are in Paris!)
-
Greetings to you all from TOKYO.
I am delighted to have gotten messages from the USA, Switzerland, and France. Thank you very much. This past year has been a very difficult one since I got PCP and was found POZ. Everyday I have thought about my death. The messages from the LTSs mean a lot to me. Today this came to my mind - maybe I will not be able to overcome my fear easily. One thing I can do now is to give my life a two-year increment (conservatively) and extend it if possible at the next stage. I got a hint from Mark S. King. You may laugh saying this idea is silly as you say that the medication now is excellent. This way of looking at my life may help me at least until I get to feel more confident.
Jeff G. - thank you for your patience.
Leatherman - I appreciate your encouraging words.
Zach - arigato .
Almosttoolate - thank you for your kind words.
Tonny - gracious.
Mecch - danke.
Eric - ありがとう、merci.
-
Special.thanks to Ted and GRASSHOPPER, too.
-
Drewm,
Thanks for the info about PCP .
-
One thing I can do now is to give my life a two-year increment (conservatively) and extend it if possible at the next stage.
honestly that's 1997 thinking. When I was sick myself back in 1996 with PCP and got out of the hospital, Atripla wasn't even on the market. For over a decade, studies have been showing that people who get onto successful treatment and remain adherent should plan on living a normal lifespan
http://www.aidsmap.com/Many-patients-diagnosed-with-HIV-today-will-have-normal-life-expectancies-European-studies-find/page/1437877/
http://www.poz.com/articles/hiv_life_exectancy_survival_761_14989.shtml
http://www.medpagetoday.com/HIVAIDS/HIVAIDS/10250
this is just a sample, but really, for over a decade now we have known that if someone gets on meds (from nearly any point - early or late diagnosis) and remains adherent and UD, then their lifespan can be as long as someone who does not have HIV. The only people who die early from HIV these days are mostly people that are diagnosed just way too late OR people who have stopped taking their meds. What I'm trying to tell you is that you sure as heck better be planning on more than 2 years!
I used to only have a 3-month plan back in 1996 and boy has that screwed up my life plans. But that was how it was back then. Now, I am working on how to live as long as my 97-yr old grandmother who is still pretty healthy for her age. If you only have a 2-yr plan and are not planning to live until retirement and into your 80s, you may very well not have enough resources when you need them. Instead of a 2-yr plan, you really better be planning on what you'll be doing for a lot longer than that. ;) If LTSs (who had less effective meds for a long time and more issues) have to worry about living to 85 then somebody like you sure better be thinking about living to 85. Thinking and hoping about living only 2 yrs is just short-sighted and not scientifically valid. ;D
-
Plan on living like you will live forever . Save money for your old age and treat your body well and you will be just fine .
-
Leatherman and Jeff,
Thanks much. Now I try to keep your advice in mind.
-
Good morning to everyone, although it is evening here.
It was a year ago that I got sick with PCP. As I mentioned a few days ago, my latest lab is 290 and under 20. Until I came to know this site, I had thought the situation about this disease to be the same as that in the 80s. Now I understand they have made tremendous progress in medicine. You all have helped me reach this stage. Please scold me any time if I again lose ground. .皆さんどうもありがとう。感謝しています。
May we all live long lives.
Special thanks to Jeff and leatherman.
-
ojo Hi Daniel, I'm glad you are feeling more relax...after my PCP, it took me five years to get a reading of cd4 361, never my VL got tour levels, until 13 years later, finally got it UD...this may tell you, that meds are way to better than during the 80's...you are going to be fine for years to come, as long as you take your med/meds...wishing you the best...hugs ojo
-
Thanks, TONNY.
Muchas gracias.
-
You are welcome :) :)
-
Please scold me any time if I again lose ground.
never any scolding Daniel; just encouragement. :D
now sometimes it might be forceful or blunt encouragement; but it's always meant as encouragement. LOL
Happy New Year and many, many more for you ;)
-
Today I had BUFFALO wings with blue cheese at TGIF restaurant in SHINAGAWA, downtown TOKYO. Felt like I were in CHICAGO, LA, NYC, BATON ROUGE, or anywhere else in the USA.
-
Hi to everyone.
It is after midnight in Asia but I would like to drop a line.
I am a member of a local poz site the purpose of which is the same as that of this one. One difference is the language. One member has just shared a story of his old pet cat close to death. In an imaginative story, the cat is saying to his master...Please forgive me for not being able to with you any longer. My life is not designed to be longer than yours. Do not cry after I depart. That would make my life as a cat sent to this world meaningless. I am just going to be with my sister cat you picked up with me on the street years ago...
I am now crying. This has been a difficult year for me and I have just thought about the worst thing that could happen to me. Now I have realized that we must move on to live, whether positive or not, in the frame of time given to us. This story of the cat has guided me to look at my predicament in a bit different way. Thank you for reading and for your constant help.
Tj
thing that could happen to me. Now I have realized that we, whether positive or not, must move on to live in the time frame given. Thank you for reading and for your constant help.
thing that could happen to me. But now I have realized that our life is something given and we all
have to live in that frame, whether we are poz or not. This story of the cat has led me to look at my predicament in a different way.
Thank you for reading.
-
Sorry my previous posting looks messy. Something is wrong with my computer.
-
I fixed it for you !
I lost a pet a year ago and I still feel the pain of that today ... its a great story, thanks for sharing .
-
Happy New Year.
We are ahead in time so it is already 2015.
-
Happy New Year.
We are ahead in time so it is already 2015.
already?!? ::) I still have a list of chores and cooking that has to be finished... much less the party I'm going to tonight.
Happy New Year to you too! I'll join up with you in 2015 in about 12 hours ;D
-
A happy new year to you all.
Thank you for your kindness you have shown to me since I came to this board.
謹賀新年 from TOKYO.
-
ojo happy new year to you too Damiel....hugs ojo
-
Hi,
As some of you know, I am in Japan. This morning, I read a posting in our local site from one person suffering from a brain disease. According to what he says, he has taken HAART for five years and still the disease has come around. When I was in hospital one year ago, one doctor told me that that disease might come when the CD4 count was very low. This has made me anxious - what is your understanding of the relations between HIV and the brain disease? Thank you in advance.
Daniel
-
which brain disease daniel? there are many of them
try to ease up on your fears man, just take your meds, thats all we can do, and they work
but sure... i have aids, and low cd4 count. one of the affects, i have a lesion on the frontal lobe of my brain. have one on my spinal cord as well. life goes on.
there is a relationship between aids and a long list of ailments, most of which have never affected me. some of which have had a significant impact on me.
-
Zach san,
Thank you for your reply.
The guy asked about PML.
-
Ah man, I hate to feed fears, so unless you are having some specific symptoms that have brought you to this, please put it out of your mind. Yes, what you're talking is related to I have been through. Google the terms inside the quotations, you'll see the similarities. Both are progressive demyelinating conditions
"PML myelopathy"
"transverse myelitis"
To beat this drum again, taking your meds diligently is the most proactive thing you can do to protect and treat yourself. I had what is described as an acute monophasic episode. Sparing you all the rest of the big medical words, basically it hit very quickly. It felt like a lightening strike, or an electrical short. Knocked me down. I've limped a little since then.
It's scary stuff Daniel, not going to bullshit you, it's been a rough year. But if you are on meds, you're doing all you can do.
edited to add, your CD4 count is above 200, you're in fairly safe territory. highest risk during extremely low cd4 counts. little treatment other than time. and time has helped me.
-
Thank you, Zach sann.
I am now chatting with the guy here in Tokyo and he is more scared than I am.
I have just told him that what you told me in your previous message = we can only take meds. Thank you.
-
Take one step at a time.. I had PCP with a viral load of 90,000 My CD4 count was 88.
Take your meds.. be diligent about it .. you don't want resistance ..my CD4 is still 285 and that is with over ten years of med, and having HIV since 1986..
hang in there.. some days seem impossible but you can do it!!
by the way my brother fly's for your same company.. LOL
lis
-
Hi from TOKYO .
Now I have another problem. It is not easy to accept that I have this disease and i just feel regretful and depressed. I know nothing will change though. How did the people get over this feeling at the beginning stage? Please give me advice. Thank.you.
-
Hi Daniel, there is no one right way to move forward and accept a positive HIV diagnosis .
The fact that you are here and asking for support is a good way as well as talking to your doctors and telling them you are having difficulty accepting your new reality .
I have heard some say that time itself can ease the anxiety some people feel . Just try to remember to remind yourself everyday that you are OK right now and you are going to be OK tomorrow .
-
Hi from TOKYO .
Now I have another problem. It is not easy to accept that I have this disease and i just feel regretful and depressed. I know nothing will change though. How did the people get over this feeling at the beginning stage? Please give me advice. Thank.you.
hi daniel...i feel for you...when i was deed, i went through the same feeling, but one day i decided either to be the victim or a fighter, i decided to fight the virus, I couldn't turn back time..if you have family or love ones, do it for them, it is worth living even with HIV...I'm HIV +, legally blind, and still enjoy life because there a people who loves me and want me around..i hope you find a way to live your new life, and be a fighter...hugs, you need lots of hugs.....arigato ojo
-
Daniel, make each day the best you can. Make sure that each day in some way includes something you really enjoy. Doing that ...what in some cases someone might call a "small thing" can be huge in terms of shifting how you are feeling.
Take a shower, take a walk, have a cup of tea, read something, say hello to someone you like or whatever things get you to living in the moment. And out of the worries that are running around in your head.
Best to you.
-
Thank you, everyone, for your advice.
This has been a difficult time for me but I try to keep your advice in mind.
Arigato and yoroshiku.
-
Hi from TOKYO.
I have not visited the USA since I got sick with PCP one year ago. I am thinking of going back this year. I am, however, a bit worried that it might be too much considering that I am still recovering with my cd4 at 290-300. The flight from TOKYO to Minneapolis or Detroit is a twelve hour flight.
Do you think I am not yet ready to go back to some of my regular activities? Of course I will ask mydoctor next time. Those who were sick with AIDS, did you refrain from being active for a while?
Thanks.
-
I traveled all over the world with a cd4 count much lower than yours ... I say go and do what you feel like doing, that was always my motto .
-
I traveled all over the world with a cd4 count much lower than yours ... I say go and do what you feel like doing, that was always my motto .
Ditto. I was running around India, Rio de Janiero and many other places with lower numbers. When I had PCP my pulmonoligist said ok to travel at about 170-180, I think that was the time I had MAC and bunch of other crap too. Of course that was based on me, but since it's been a year and you're healthy, I wouldn't worry about it.
-
Thanks, Jeff.
AUSSHEP.
Thanks. I sometimes fly from TOKYO to HOUSTON George Bush Intercontinental or to Dallas Fort Worth nonstop. Too long . Three meals.
-
It looks like many of us members has chosen Memphis as the location to get together for a week in August . If you can mange to come you would meet a lot of new friends and have a great time ... You will get to visit Elvis at Graceland too !
http://forums.poz.com/index.php?topic=57230.0
-
Thank you, Jeff.
I will think of it. I like TENNESSEE very much. I drove from MEMPHIS to JERICO ARKANSAS last time.
-
Good morning from TOKYO.
I have just watched some you-tube videos and one of them was about Dr. Peter-Jepson of Canada. What a sad story! And I cannot imagine the fear that the people had at the time there was no medication. I know that many of you have gone through that as well.
I thank you all for your patience. I am in the process of learning how to love with this disease and need your advice constantly. Without this site, I might have given up my life last year.
-
Oops - how to live.
日本語わかる人いますか。
-
My female friend has just called. She is an American from Grand Rapids Michigan and has been living in Japan for over three decades. She is one of the two people outside of my family that know of my disease. For the past year she has been concerned about me since I have been severely depressed. I told her today that I had found this site and that I have communicated with many people on it. She is thankful that you are there to listen to me. M.is my best friend to whom I came out about my sexuality before anyone else. Her sister is ill and she has to fly to the USA every three months but still she worries about me and calls to check on me very often. I am very glad that I started learning English when I was twelve. Thank you all for being there.
-
Greetings from TOKYO .
One year ago today, I was officially diagnosed AIDS. I felt my my life had ended. I have not recovered from the shock yet and this has been a difficult day. I saw beautiful Mt. Fuji from a train and felt tears on the back of my eyes. Sad anniversary day.
-
bullshit, whats sad about it? happy birthday man, you are alive! piss em off, live long and loud
celebrate life
that mountain is calling you, you hear it and you feel it
go climb that goddamn mountain- j. kerouac
-
Zach,
I will try. Thanks.
-
Hi from TOKYO.
Yesterday I visited my doc at the hospital and he told me about what is called REMUNE. What exactly is that? Could anyone help me understand what it is? Thank you .
-
Daniel, you will be fine & you can get through this. When I initially found out my CDS was around 280 & my biral load was over 300,000. It took about 9 months of Atripla but my numbers bounced back & I've been feeling better than ever. MY CD4 is currently 800+ and my viral load is still undetectable.
This is such a wonderful group of people. I don't come as often as I should (maybe I should change that), but everyone is aways so kind & eager to help.
-
Joey,
Thanks a lot. Hope things will go well with the guy and that you will be able to visit our country.
-
Hi from Japan.
Yesterday one member of our local poz site emailed me asking if it would be Ok to go back to work after being released from the hospital. He was there for a month and his CD 4 is still 100. His doc told him that it was up to him. The guy is worried about the germs and other stuff. Any advice? I took three weeks off after leaving the hospital one year ago and there as no problem.
-
Sorry. I mean there was no problem .
-
Hi from Japan.
Yesterday one member of our local poz site emailed me asking if it would be Ok to go back to work after being released from the hospital. He was there for a month and his CD 4 is still 100. His doc told him that it was up to him. The guy is worried about the germs and other stuff. Any advice? I took three weeks off after leaving the hospital one year ago and there as no problem.
ojo sayonara Daniel...I work for five years with a cd4 of 20 to zero, so I don't think this person will have any problems going back to work, if he is going to get sick, he will get sick working or not...tell him to no worry until he has a reason to be worry about...hugs...arigato ojo
-
I say it depends on what your friend was in the hospital for and how well he is now that he is out. I left the hospital after PCP, very weak and un-healthy. I stayed at home for quite some time.
but if your friend wasn't ill with something that would suggest precaution, and he feels up to working again, then he might as well go back and give it the "ol' college try". Of course, he should wash his hands frequently, and try to avoid germy people.
omg. I could hardly type all that logical crap. LOL ;D I was so germ-ophobic when I got out of the hospital!! It was horrible! But I was still very sick and so becoming a recluse, a hermit, a shut-in wasn't all that unexpected. Once, when I was in the grocery store, someone sneezed in another aisle. I left my cart of food and literally ran out of the store. I didn't go back to the store for 3 days. :o ::) Thinking about germs I might have run into today, while at a meeting, is starting to creep me out right now. :o LOL ;D
-
I would say if the person can afford it professionally and personally give resting another month and then go back ... other wise what everyone else said .
-
Thanks to TONNY and JEFF.
-
Mikie,
Thank you for sharing your story.
-
Hi.
Today I had a visit to the hospital.
My cd4 was 300. Not much difference from last time.
My doctor told me about a man who was a denialist and paassed away last November. I learned how dangerous it wad to deny and take no meds.
-
ojo Hi Daniel, your cd4 will increase little by little, as long as you are above 300 you don't have to worry, just take care of yourself, I do wash my hands all the time, it helps....yes, it's sad, that there are people whom for some reason do not seek treatment, HIV is still a dead sentence for those who don't take meds..hugs ojo
-
TONNY
Gracious.
-
I have written too much these days. Sorry. The latest about me. I have been active in the local poz site which is all done in Japanese and I have been asked to answer questions by many Japanese poz people. The info and advice you have given me on this site mean a great deal and help me a lot in this activity. SPECIAL thanks to Jeff, leatherman, Zach, Tonny, Andy, mecch, Almost2late, and everyone, too.
-
You are welcome !
-
My cd4 was 300. Not much difference from last time.
Holding steady? WooHoo!
Now don't look at this in a negative light. ;) Having cd4s above 200 is great and not having them drop is great! While we would all love to have more tcells, more is not neccesarrily better. There's nothing wrong in not gaining any more, especially when your not losing any more. ;)
My doctor told me about a man who was a denialist and paassed away last November..
some members here are no longer here because they were denialists. :(
I have been asked to answer questions by many Japanese poz people.
Great Work, Daniel! :D
-
ojo You welcome Daniel, tell your Japanese folks to ask us questions, I'm sure someone in here would speak Japanese, lol..hugs ojo
-
THANKS to Jeff, leatherman, and Tonny.
I have watched the YOU TUBE videos about the denialists.
One guy was saying he had vegetable juice instead of medicines.
Just out of curiosity, does anybody know of him and is he still around?
-
One of our rules on this forum is we do not link to or dispense denialists material … its one of the few things that can get a person banned from the forum the first time they break this particular rule .
-
OK, Sorry I got it.
Gomennnasai.
-
dont go down that road daniel, none of that shit works, those people are dangerous
-
Zach,
Thank you, daijobu!
I know that adhering to the meds RELIGIOUSLY is of utmost importance.
When I asked my doctor whether I might get PCP again, he said that it would happen if I did not take the meds.
-
Zach,
Thank you, daijobu!
I know that adhering to the meds RELIGIOUSLY is of utmost importance.
When I asked my doctor whether I might get PCP again, he said that it would happen if I did not take the meds.
ojo Hola amigo japones...your doctor is right, as long as you take your med/s and your cd4 are above 200, the risk of getting PCP, are zero, I got three episodes of PCP in five years because my cd4 were around zero, now, in the last eight years with cd4 between 300-500 ind I don't ever remember what it feel to have PCP....I've been taking meds for twenty yearsm abd I forgot totake them twice during this 20 years....buy yourself one of those medicine dispenser, that way you don't forget...I take my meds during my breakfast and right after my dinner, if I go out for dinner, my meds go with me, ....check with your doctor if you can take your med/s with grapejuice, I think that's a no, no....arigato ojo
-
TONNY amigo de Mexico,
Gracious.
I miss good MEXICAN food.
-
Hi.
One year ago today I was officially told in the hospital that I had AIDS. It was quite late that I got to know this site but without it, I would have been mentally finished. Thank you all.
-
Hi.
One year ago today I was officially told in the hospital that I had AIDS. It was quite late that I got to know this site but without it, I would have been mentally finished. Thank you all.
You are now a part of our loving and sometimes dysfunctional family . ;)
-
One year ago today I was officially told in the hospital that I had AIDS.
Happy first AIDSaversary! ;D ;D ;D
While you might be thinking "why would I ever want to celebrate this day?", think about what this day is in the here-and-now. Today marks a year that you have survived AIDS. Think how happy you'll be, and how little you'll be worrying, four years from now when you celebrate your 5th year of surviving AIDS. ;D
Congratulations for making it through year one! :D
-
Hi.
One year ago today I was officially told in the hospital that I had AIDS. It was quite late that I got to know this site but without it, I would have been mentally finished. Thank you all.
ojo Hi Daniel..for me is a celebration, after my PCP that almost kill me and my cd4 of 20, it's a celebration of having beatten death and start a new life, because I was reborned that day, and I'm here, celebrating my 20th anniversary, tho, it hasn't been easy, because HIV/AIDS left me legally blind and with neuropathy (part meds and hiv), but I'm still celebrating birthdays, enjoying my loveones, and enjoying life, because, life is still beatiful even living with HIV, so CONGRATULATIONS, for your first years and I hope you keep celebrating lots more...big hug for a new Daniel...(reborn= my name, would you guess what's my real name?) ojo
-
Thank you , Jeff, tonny, and leatherman .
I know this family is sometimes dysfunctional. Love it, though.
-
ojo Just some members, I'm not...do you agree with me?,lol...hugs ojo
-
Tonny,
You are always nice to me.
Thank you .
-
Hi.
It is afternoon here in Japan.
Since yesterday I have been a little bit short of breath and now am waiting to be checked at the clinic. Is it possible to have PCP again？ I feel similar to the way I did when I was in hosp. one year ago. I am worried.
-
Best wishes. You have our love and let us know the results.
-
I'm sure you'll be fine. I know what you're talking about though. A couple of months ago I had a cough and some shortness of breath that totally gave me a pneumonia flashback. I guess once you've had it the fear (or memory of it at least) never completely goes away when you have certain respiratory symptoms, but PCP won't happen again while your immune system is in good shape.
-
Hi.
It is afternoon here in Japan.
Since yesterday I have been a little bit short of breath and now am waiting to be checked at the clinic. Is it possible to have PCP again？ I feel similar to the way I did when I was in hosp. one year ago. I am worried.
ojo Hi Daniel, I hope you are feeling better...anxiety causes to feel shorth of breath...I don't remember you numbers, but I hope its not PCP again...bear hug on your way...arigato ojo
-
Already tired, AUSHEP, TONNY and everyone,
It was not PCP. Just a minor cold. I am relieved and thank you.
-
Greetings from TOKYO.
We are in the mourning time for two of our nationals that were killed by the ISIS terrorists.
Never have I heard of so cruel a thing in my life.
I have a question. Yesterday my doctor told me assertively that this disease is now a MANSEI SHIKKAN, the direct translation of which in English is CHRONIC DISEASE. Most of the readings that I have done in English, however, say it is a MANAGEABLE DISEASE. Do those two have the same meaning to you? In my native language, they are slightly different . I would appreciate if you could help me clarify this thing.
Arigato.
-
I guess once you've had it the fear (or memory of it at least) never completely goes away when you have certain respiratory symptoms, but PCP won't happen again while your immune system is in good shape.
true dat! both the good advice about PCP not happening again (although you can still get regular pneumonia, so get that pneumococcal vaccine!), and about the fear. It is very hard for a while after you have been that sick to get past the point of worrying if every cough, wheeze, or sneeze is going to be another trip to the hospital or to the morgue. :o
however Daniel, don't forget what the PCP did to you. PCP is very hard and damaging to the lungs. You may notice this for years to come. My last of 3 bouts of PCP was about 16 years ago. Although I exercise regularly and engage in a lot of physical activities, I still notice the lung damage sometimes when I do a lot of exertion. It doesn't stop me at all, I just feel winded a little quicker.
CHRONIC
MANAGEABLE
HIV, for those more recently diagnosed, is now a CHRONIC MANAGEABLE disease. It's chronic because there is no cure and there is no way to totally eradicate it in a person's system so there is always some effect from the HIV. It's manageable because we have treatment that will keep HIV in check, along with many of the side effects of the HIV and/or the meds.
on the other hand, just as it has always been, HIV is still the same TERMINAL disease that it has always been - but only when it's untreated.
-
Leatherman, you are the greatest. I hope I am not sounding like RICHARD SIMMON.
I first saw him on TV in Honolulu years ago and my reaction was WHAT in the world is that?
It was about DEAL A MEAL.
Arigato from the country of FUJIYAMA .
-
I mean RICHARD SIMMONS .
-
Tomorrow I am having a visit to the hospital.
Very nervous I am now. Hope the viral load will be lower than twenty.
-
Hi from TOKYO.
I have just returned from the hospital.
CD4, 320; and undetectable. The frequency of checking was changed from every two months to every three months. My doctor told me again that people do not die of this disease if treated.
He is a JAPANESE and often goes to Africa to help the local physicians. Maybe I should trust him wholly now.
Thanks for reading.
-
CD4, 320; and undetectable. The frequency of checking was changed from every two months to every three months.
awesome!
It won't be long until you only have blood work done every 6 months. ;)
-
ojo Hello Daniel from Tokio....good numbers amigo... now, relax and have a shot of tequila...hugs arigato ojo
-
Mikie,
Thank you very much.
Hope you are doing well.
Tonny,
Gracious, amigo.
Greetings from japon.
-
Hi from TOKYO.
I have just returned from the hospital.
CD4, 320; and undetectable. The frequency of checking was changed from every two months to every three months. My doctor told me again that people do not die of this disease if treated.
He is a JAPANESE and often goes to Africa to help the local physicians. Maybe I should trust him wholly now.
Thanks for reading.
Hello dear. Yes please, trust him. Trust us. Are you still afraid of dying? It was such an overwhelming fear when you joined this forum.
-
Mecch,
Thank you.
I am still feeling afraid but try to tell myself that it will be all right.
-
Hi Daniel :),
You are doing great, wow... You should not be afraid cause your numbers are so great.. If you are not feeling ill, you should be enjoying life like anyone else... Good luck my friend ;)
-
Almost,
Thank you much.
Hope your number will go up, too.
Today I went to a TGIF restaurant and had barbecued chicken.
Best wishes.
-
Thank you for your nice comments, everyone.
It may sound strange but I have set a photo of my doctor as the wallpapers of my computer and my telephone so that I can see him when I feeel worried and nervous. Crazy me.
My dear Dr. Kobayashi.... 小林先生！助けてくださいね。
-
oojo Hi Daniel, Daniel, Daniel....I wish I could find the right words, to make you feel better, everybody here is correct, you are going to be fine, just keep taking your meds and stop eating barbecue chicken, hahahah, if you want to be healthier, eat lots of tacos and tequila, heheh...my friend, enjoy life, we are not getting any younger....I will send you my picture, so can can set it as your pc's wallpaper...hugs ojo
-
Tonny,
What a nice person you are !
Thank you for your kind words.
Arigato.
Please take care.
-
Hi from TOKYO.
We have had snowy weather here and again we have quite big earthquakes these days. On March 11. 2011, l was on the sixth floor of a building in TOKYO when a first big one hit. I screamed and tried to go down the stairs when the shake got worse and l fell down to the floor. Cyndi Lauper was just on her way flyng to TOKYO from the USA and her plane diverted to the YOKOTA AIRBASE instead of to TOKYO NARITA. She completed her one month tour despite so many aftershocks and the nuclear power plant accidents. Anderson Cooper left right away, though.
Today I tried running the stairs from the first floor to the fourth floor and had no problem breathing.
I ws s really worried that my lungs had been damaged due to PCP. Hope it is not. A little bit of happy news after writing about my constant worries.
-
Hi from TOKYO.
Today I learned about a person here in Japan who has been disgnosed with his CD4- 0.9.
He had at least five Ols and now is back at work. This has made me reassured that the prresent medication is awesome. He is still under 100. His story has given me lots of encouragement.
Arigato .
-
His story has given me lots of encouragement.
I would hope by now that you have read enough of the studies reporting that HIV positive people, with proper medication, live a normal life span. I would hope that you have been told enough personal stories by HIV positive people who have survived AIDS, with very low CD4s, anywhere from 1 year to over 3 decades. I would hope that by now you understand the futility of wasting anymore time worrying about an AIDS death. I would hope by now you're moving on towards planing and saving for retirement and your life at 80 ;)
If you do still have any residual worries, just keep saying to yourself, "this is 2015, not 1985"
-
Leatherman Mikie,
Many thanks.
I am planning to join the group in MEMPHIS in summer.
-
Greetings from TOKYO to everyone.
I thought I should sometimes leave a message even when I have nothing in particular to ask for advice of. I am living slowly each day. Thank you for your support. I am just wondering if anyone of you has come to my country - I know Zach did.
Please let me know when you are in town.
-
Hi.
I have just learned about AMFAR and watched some videos.
Mr. Oriol G. was introduced. Looks like a nice person.
He says he believes there will be a cure. I hope so, too.
-
ossu daniel!
haven't been following your thread regularly, but just had a few laughs catching up
you're doing well, great to see that
keep hanging in there, you're head is getting in the game, soon you'll own it
-
Zach,
Happy to hear our way of greeting OSSU !
You must have picked up a lot of the language when you were staying in Japan.
Thanks much.
-
not much, but i had some flight attendants that push me... everywhere i've been i try to pick up as much as i can
-
I don't know if I should add this to my PCP thread.
Anyway I have just learned that Chuck Panozzo of the group STYX has the same disease.
I went to a concert when the group came to Japan almost three decades ago. It was when their song Domo ARIGATO Mr. Robotto was popular. I am glad he has survived.
-
I am now in hospital, this time with mental depression.
Cannot help feeling my life has ended. Today I feel worst.
Sorry for this negative posting. Hope I will feel better.
-
I am now in hospital, this time with mental depression.
Cannot help feeling my life has ended. Today I feel worst.
Sorry for this negative posting. Hope I will feel better.
ojo Hello Daniel, I'm sorry, plese, be strong, you will be okay...big hug on your way ojo
-
I am now in hospital, this time with mental depression.
Cannot help feeling my life has ended. Today I feel worst.
Sorry for this negative posting. Hope I will feel better.
Hi Daniel ... I am wishing you the best and hoping that you can get the help you need to move forward . I have been poz for over 30 years and I am not special, so if I can do it you can to . I have had to get help a few times in my life when I felt my problems were bigger than myself and it helped me get back on track. I applaud you for having the courage to get help, One thing many of us long term survivors have in common is that we accept what we cant change and work hard to over come the things we can change . With the right help you can do this too. Best of luck and looking forward to meeting you in Memphis .
-
Hi Daniel,
I am a long time survivor also, Jeff is right about accepting things we
can't change. I had PCP many years ago too , you have have fought hard,and from what I've read sounds like your doing well with your treatment.
We all hit some bumps in the road , as Tony said be strong, a
Big Hug from Me Too ! Wade
-
Hi Daniel:
Relax buddy; you are going to be fine. You have been told so by the knowledgeable people here and most importantly, by your specialist. You have to believe.
What will make you be healthy and live up to the wonderful life expectancy of the Nippon country is your medications and your good adherence. However, you have to have a positive attitude towards this new rules of the game.
Earlier in the thread you said that therapy wasn't working making you feel less doomed. You haven't really shared your experiences with your psychologist with us. If you feel like, do so, it helps a lot; also be patient, the change will not come overnight.
On the other hand, shocking news like the DX might on some people mess with the fine chemical balance in our body and head. Maybe a pill under the supervision of a psychiatrist will restore that balance. Many times, the treatment is temporary.
All the way to Japan, a tight and loving hug.
Arigato, ライフ・イズ・ビューティフル
(did I write "life is beautiful" right?).
Ray.
-
Daniel,
I'm sending you good wishes and a big hug.You have taken a good step by getting some help.Please don't ever feel so alone.We are all here for you to listen and I promise you that it gets better.
One step at a time and one day at a time and also a huge thank you to you as your kind words and posts have helped so many people here?
Rest up and try to take it easy.Thinking about you
britchickxxx
-
Sorry .typo error ....many people here!!!
-
Daniel, I'm so sorry to hear you are dealing with depression but at the same time extremely happy that you are doing something about it and getting the help you need! You should be proud of yourself for that!
I've read the wonderful comments and encouragements you have got from other members here and I hope your fears will start to lessen soon. You are taking good care of your physical health so you shouldn't be scared of becoming ill. I hope you have someone you can talk about all your fears and emotions and find a way to feel happy again. All the best and hugs to your way!
-
Thank you, everyone.
-
Now I am out of hospital.
Thank you, everyone, for your kind words.
From TOKYO
-
Now I am out of hospital.
Thank you, everyone, for your kind words.
From TOKYO
ojo Hola Daniel...I'm happy for you, now, I don't know what you do, if you are still working or else,..please, keep yourself busy, keep living, life is still good with HIV....hugs ojo
-
Hi Daniel,
Welcome home !
Hope you are feeling well.
Surround yourself with people and things that make you happy,
I have never been to Japan , but have always wanted to walk
through one of you country's beautiful bonsai gardens.
Maybe someday , one never knows !
Keep us posted ,
Be Well ,Wade
-
Everyone, millions of thanks from TOKYO .
I truly pray that this disease will become history in our life time, for you and me.
-
KonnIchiwa.ダニエルです。
My latest cd4 count---350 and undetectable.
Sorry l do not leave my comments often but l check this site everyday.
ありがとう！
-
great news! :D
-
That's great news, DanielT. I'm happy for you.
-
Leatherman and AT,
Thanks a lot.
-
ojo Good for you amigo, good numbers, no more PCP worries for you, now relax and enjoy life....hugs arigato ojo
-
ojo Good for you amigo, good numbers, no more PCP worries for you, now relax and enjoy life....hugs arigato ojo
TONNY,
Thank you very much.
I hope you are doing well.
Wish you the best.
-
Hi.
From TOKYO. Actually I am in YOKOHAMA today.
Just a thought.
Have there been cases where the medication did not work with no particular reason, I mean the cases the patients were adherent to it but failed? Any thoughts from you?
Arigato.
-
were adherent to it but failed
nope. and that's why in 1996 the world changed as people with HIV were able to get triple-drug therapy and the dying stopped. While there are some cases where therapy has seemed to fail for "no reason", nearly all failures are directly tied to non-adherence by the patient.
-
Leatherman,
Thank you.
Yap and nope sound very American to me.
Today I helped a couple to show the way in YOKOHAMA and...they came from
Kentucky. Do they pronounce five like faav?? The husband said faave days instead offive days.
It is fun for me to hear different regional accents.
-
Helped the couple showing the way...
My first English teacher EUNICE would yell at me.
-
Hi from TOKYO.
For the past few days, there has been a discussion about the relations between HIV and cancer in our local poz site. Do far I have not joined the heated discussion. One group says that the virus causes cancer and the other ssys that cancer is caused by the medication. Does anyone here have any thoughts about that? Arigato .
-
Hi from TOKYO.
For the past few days, there has been a discussion about the relations between HIV and cancer in our local poz site. Do far I have not joined the heated discussion. One group says that the virus causes cancer and the other ssys that cancer is caused by the medication. Does anyone here have any thoughts about that? Arigato .
neither HIV nor the medications cause cancer.
HIV destroys cd4 cells while creating more HIV. HIV does not create cancer
medications inhibit HIV replication. HAART does not create cancer
however, being HIV+ (with the destruction and/or inflammation of our immune system) clearly does make us more susceptible to having an array of cancers that we might be genetically predisposed to having.
-
Leatherman レザーマン、
Thank you for the information.
I will post its Japanese version on the site.
Arigato .
-
ojo Hello Daniel...20 years living with HIV, twenty years taking meds, no cancer to report, so far...there is no cancer in my family history...hugs ojo
-
Tonny,
Thanks much.
You are always kind.
-
Hi from TOKYO.
For the past few days, there has been a discussion about the relations between HIV and cancer in our local poz site. Do far I have not joined the heated discussion. One group says that the virus causes cancer and the other ssys that cancer is caused by the medication. Does anyone here have any thoughts about that? Arigato .
Aids related cancers predate the meds that saved our life … so I call the claim that our meds cause cancer false .
-
Jeff, ジェフ
Thank you for your comment.
Arigato.
-
Tonny.
This is how your name is written in Japanese.
トニー
-
As a matter of fact the incidence of aids related cancer is greatly reduced by our meds as it shores up and strengthens our immune systems . As an example … kaposi Sarcoma most times resolves after a person gets stable on HIV meds .
-
As a matter of fact the incidence of aids related cancer is greatly reduced by our meds as it shores up and strengthens our immune systems . As an example … kaposi Sarcoma most times resolves after a person gets stable on HIV meds .
Daniel, Jeff is telling the truth here.. I had Kaposi Sarcoma and it cleared up with Atripla alone, no chemo or radiation was needed.. I am very grateful for this.
-
Almost, オールモスト、
Thank you.
Do you still feel out of breath?
I sometimes do.
-
Not as bad as when I first came out of the hospital, I use to get outta breath walking to the corner. Much better now :)
How about you Daniel, are you still out of breath?
-
Almost,
When I climb up the stairs, I feel breathless but not so bad.
-
Tonny.
This is how your name is written in Japanese.
トニー
ojo Interesting my friend, thanks...hugs ojo
-
Hi.
This time people on the local site are arguing over the possibility of dimentia.
How much is known about what we call HAND? Sorry this must be an ambiguous question.
I am also quite worried because I m already fifty years old.
-
Try not and worry over things that you do not have my friend. The truth is since you a 50 and on treatment your health is going to monitored far better than most people who do do not have HIV for any conditions HIV related or otherwise. Your odds for a long happy healthy life far exceed any of the negative health concerns that could befall a man of your age when it comes to HIV since you are on successful treatment. All is well .
-
daniel,
you're winning the battle, are you so eager to keep fighting that you look for a new enemy?
get out of the worry well brother. the things that might happen to us, they're endless. don't spend your time and energy on problems you aren't faced with, there aren't enough hours in the day for that.
you're on meds... good ones, and that is the single greatest thing you can do to minimize risks.
be confident
*but hey, if you do forget something, or when something slips your mind... you can always blame it on the aids dementia (works for me) ;)
-
ojo Hello my friend....please, do not worry until you have something to worry about...I'm 52 years old, taking meds for twenty years, and I haven't noticed any memory loss... hmmm what we were talking about?, lol..hugs ojo
-
Jeff,
Zach,
Tonny
Thank you.
-
And the viral load 20, not ud.
How can l interpret this?
Shocked.
-
Hi again.
When I was writing my last posting in the subway, I was being shocked and quite panicking. Later than that, I had a chance to talk with a medical professional woman on the phone and she was much more helpful. I don't know if I can translate what she told me into English well enough but I will try.
1. The cd4 number changes a lot during the day. The soldiers are not only in the blood but they tend to gather in lymphs, so it can happen that the blood check does not necessarily show what exactly it is.
2. The device to check the viral load is not almighty. It cannot measure the small load precisely enough, therefore 40~50 or undetectable are not a big difference.
Now I like this woman better than my doctor.
Hope you understand what I am saying????
-
daniel, she took the words right out of our mouths
your viral load is undetectable, in any language :)
and your cd4 drop... it was a blip, it only looks like a significant drop because you have such a low count
you're ok. important thing is you're not experiencing treatment failure.
last thing, and i'm sure you've seen it said, now it's being said to you. don't look too closely at one lab result to tell you the story. look at the trends over a few consecutive tests.
if your viral load suddenly shoots up substantially on one result, that is cause for concern. but really, if you remain adherent on your meds, you'll have nothing to worry about
-
Hi, Zach niisann.
Yes.
AND the woman said this, too - in the case of treatment failure, the viral load will go up by hundreds. Her name is Umeko sensei.
-
Zach niisann.
:D arigato oniisan (you're a little bit older than me, so that would be correct right?)... that means a lot to me, been waiting for you to stop being so damn formal all the time :) you're among friends
-
Hahaha.
I will call you BROTHER, BUDDY, PAL, or SPORTS FAN ....
When I was in the training of learning English, the teachers trained me to address people Mr Miss Mrs. I was one time kicked out of the class by a teacher when I said ain't. She almost had a heart attack listening to LIKE A VIRGIN by MADONNA. The teacher was from Spokane. Fond memories.
-
And in 1970, I was six years old. I had a special encounter with TINA TURNER at TOKYO AIRPORT and she extended her hand to shake mine. Ike was there, too. At that time, her hit PROUD MARY soinded like &@#%+=*:^/)9!?)/#-*+-+---!=-#. Now l can catch the words in that song.
-
twenty IS undetectable.
(wonder why so many doctors don't explain this to patients; or why, maybe, patients don't hear this information when explained? We're always having threads here explaining that 20=UD)
"Undetectable" is just a word used to describe a very low HIV viral load. Undetectable does not really mean "not detectable" (because small amounts can be detected), nor does it mean the HIV is gone. "Undetectable" simply means the point at which this blood test no longer detects HIV. I'm going to bet, like almost everywhere now, that the lab were your blood is tested only tests down to 20. In the past, viral loads couldn't be measured below 500 - and that was called "undetectable". Then in the last 5 yrs or so, the test was improved and now can actually measure down to two (2). However that test is more expensive - plus there is nothing to gain in knowing the viral load count is a low number of 20 or of 2. Actually a count anywhere from 100 to 2 is really no different from "undetectable".
"Blip" is another misunderstood word. to be honest, until a viral load count rises to 1000 or greater, it probably shouldn't even considered a "blip".
How can l interpret this?
Shocked.
shocked? no way!! you should never be shocked by a viral load under 100. We all have virus in us. We all have reservoirs of virus, that might just be putting out HIV when our blood is tested. We also have an ever-changing level of cd4s, so you should never be shocked by ANY cd4 count (instead you have to interpret cd4 counts as a trend of several tests over some time)
how should you interpret a VL of 20?
this is no interpretation. 20 IS "undetectable".
-
Leatherman.
Special thanks to SC.
-
Leatherman ,
Thanks again.
My doc is a man of few words and does not tell me those things. One time I forwarded a complaint about him.
-
blip
: something relatively small or inconsequential within a larger context
: something that is small or unimportant or that does not last a long time
: a transient movement up or down (as of a quantity commonly shown on a graph)
blip isn't even in merriam websters thesaurus, thats how unimportant it is
so lets come up with a new word to describe normal and usual minor fluctuations that are clinically insignificant, something better than a single syllable, four letter word
something short, that sounds harmless, comforting even. without sounding dismissive of someones concern, but minimizes and soothes their worry
how about minimum allowed tolerance? minor variance? kind of a mouthful though
thoughts? ideas? ;D
-
My GOD.
I am not a native speaker of English but your choice sounds like a good one.
Minimum allowed tolerance .
-
And the viral load 20, not ud.
How can l interpret this?
Shocked.
ojo Hello amigo Daniel...20 meanns UD...treatment failure=higher VL, there is a battle inside your body between your soldiers (cd4) with help of your meds, against the invaders (HIV), you r soldiers beat up hiv, tho you suffered some casualties of war, less soldiers, but now, that your VL is UD, your soldiers, won't have nooene to fight anymore, so, now they will increase...take it from somebody whom his VL was way to high for 12 years....congratz on your UD viral load...hugs ojo
-
Tonny,
Arigato.
Are you near Cleveland ?
Do you know Olmsted ? I visited threre in 1990.
-
how about minimum allowed tolerance? minor variance?
"allowed tolerance" is probably not a definable thing as "blips" are often different per person and unsustained short-term increases in VL. that's why they are called "blips" and not therapy failure. Therapy failure would be marked by a continual viral load increase over several tests.
I have known lots of people to experience these "blips" and the amounts ranged from the tens to thousands. Personally I have had "blips" of 2500, 1800 and 980. Were these lab errors, reservoir spillovers, etc? There was certainly no "minimum" or maximum amounts. Each of these blips were followed by multiple labs back at an UD level.
"minor variance" is probably the more correct, scientifically and mathematically.
-
Esoteric but interesting.
-
Leatherman Mikie told me this a few months ago.
Hope we will be able to say in ten years, it is 2025, not 2015.
Thank you, leatherman.
-
earthquake! y'all doing ok? did you even feel it where you are?
-
Thanks.
It was big and scary but I am alive.
-
This may sound like a weird question and l apologize to you in advance.
In the early time, I mean in the 1980s, did those who survived mostly go through one or two Ols and then were they so lucky as to get recovered in spite of the monotherapy or were they lucky enough not to get to the advanced stage?
Let me get down to brasstacks, not beating around the bush.
Did many of you long term people experience Ols?
On our local site, it is 60-40%.
Thank you.
-
I should make it clearer- were they lucky enough not to get to the advanced stage until the advent of the new therapy?
Wow. English is a tough language.
-
This may sound like a weird question and l apologize to you in advance.
In the early time, I mean in the 1980s, did those who survived mostly go through one or two Ols and then were they so lucky as to get recovered in spite of the monotherapy or were they lucky enough not to get to the advanced stage?
Let me get down to brasstacks, not beating around the bush.
Did many of you long term people experience Ols?
On our local site, it is 60-40%.
Thank you.
Many of us did have aids defining infections, I know I did . The reason I survived was timing and genetics. I had PCP early on but recovered and stayed out of the hospital for almost 10 years and then I got Kaposi Sarcoma on the surface of my skin and had tumors deep in my legs. I was getting very sick and losing tons of weight and then came 1996 and a few drugs that saved me ... I just got lucky and I do not take that for granted.
Its still true today that many people find out they have HIV when they are very sick already and that needs to change by encouraging people to test . Its also important to remember that since you are on treatment that is working you will not suffer the same infections others has dealt with.
-
Dear Jeff ,
Thanks much.
I am glad I could make the message understood in English.
I was not sure.
By the way, I noticed when I was in Massachusetts that they pronounced sure just like shore
there.
-
I have read many of the blogs and seen the videos, too.
Most of them are very informative but mmmmmmm, some people...flippant.
Each person is different, of course.
-
What are you looking for in this research on people's experience, Daniel?
Have you seen the misc documentaries and films? Sometimes the very personal amateur blogs are more real, of course.
Films which explore the dying:
Docs:
Pandemic: Facing AIDS -- Rory Kennedy
Absolutely Positive -- Peter Adair
Silverlake Life
We Were Here
Common Threads
Fictions:
Longtime Companion
Angels in America
Parting Glances
Semi-fiction - And the Band Played On
-
Mecch,
Goodness .
I have never seen any of them above.
I saw the amateur blogs and videos.
-
OK
what about my question:
What are you looking for in this research on people's experience, Daniel?
So I mean why are you interesting in the time when people were dying and how only a few made it to the treatment era?
And specifically I am wondering if for you, a cure, and research on the cure, are still distractions, or if its pretty much realistic and in control. Or if you are still worried that your lifespan on treatment is radically reduced. Or if you are still worried that you are going to die pretty soon, or that you will have treatment failure.
Those kinds of questions.
And/or if you are interested in the experiences in the history of the epidemic, just learning more about the past.
-
What do you mean on your "local site" 40-60% have OIs? who? where? what period?
-
ojo Hello amigo Daniel...I think, that you are spending too much time thinking about HIV, get yourself busy, go to the gym or do something else, it is no helpful for you to keep reading about HIV, there is life beyond HIV my friend..just a thought...hugs arigato ojo
-
I would like to take this opportunity to thank you both for doing difficult jobs to maintain this forum.
It must be tough to make a decision sometimes. Some people might say your decisions are too harsh but i disagree to that. Thank you.
Daniel Takashi
-
I would like to take this opportunity to thank you both for doing difficult jobs to maintain this forum.
It must be tough to make a decision sometimes. Some people might say your decisions are too harsh but i disagree to that. Thank you.
Daniel Takashi
Daniel,
Thank you for your kind sentiments. While being a moderator can be challenging at times, overall it's a great experience, because we have such a wonderful group of members. Sometimes, we have to do things we rather not have to do, but it's all part of our job. Reality is that not everyone will agree with what we decide and that's fine.
I also want to share with you an attitude that has served me well in my life. There are things in life that we can control and other things that are simply beyond our control. If I spend my life, worrying about things that I cannot control, that is wasted energy and it does nothing but drain my being. Instead, I try to focus on those things that I can control, which reinforces my feelings that I am being proactive in addressing those issues that I may change.
Hope is the fuel of tomorrow, however, such hope must be tempered by the realities of today. While I empathize with your concerns about your future, you are worrying about things, that you simply cannot control. It does not mean you stop worrying about anything, it means you learn how to identify those things that you cannot control, so you do not waste your time. It's about doing everything in your power to control your infection and letting that give you solace that you are doing what is right for you.
Nobody can predict how long we may live, or even how well we might live. What we can do however, is to make sure that we are using every tool at our disposal to make our life as fulfilling as possible. By doing that, you are actively treating your infection and it is my hope, that through that knowledge, you will realize, that in the greater scheme of things, the best we can do is what we do for ourselves.
Be careful about only looking to the future, as it can blind you to today. You are treating your issues, which is what you need to do, however it is no guarantee on what the future may hold for you. My hope is that you can minimize your fears of tomorrow and have faith in your own ability to mold your own future... today.
Joe
-
Joe,
Thank you very much.
Happy to receive your note.
-
In a questionnaire given by a local group, there is an interesting question asking how high we rate the present medication. It sets AZT at rank 2 in the range from one to ten. I am new and don't really know how good or bad AZT was when it was the only medicine available. Would you LTSs be so kind as to tell me how high you would rank the present medicines were you to be given that question? I am just curious - will not use the info for any purpose. Thank you.
-
ojo. Bello Daniel, greetimgs from México City...Hugo. ojo
-
TONNY,
COMO ESTA USTED ?
-
TONNY,
COMO ESTA USTED ?
ojo Hola Daniel, muy birn, gracias, y tu?...back at home, finally...hugs....arigato ojo
-
Daniel,
Greetings from sunny southern California.
DD
-
HI, TONNY
Thank you for your greetings.
Hi, Dodger Dawg,
How do you do?
Are you in the LA vicinity?
-
I watched this movie recently and the scene in which the doctor told Ron that he had only thirty days left is what has made me think a lot about the reality that people were facing in and around 1985. How scary it must have been! And l know that many people in this forum have gone through the similar or same situations. Now l cannot help but feel thankful for the great medical advancement from which we greatly benefit.