Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 21, 2014, 10:06:36 PM

Login with username, password and session length


Members
  • Total Members: 24268
  • Latest: jpchc
Stats
  • Total Posts: 650123
  • Total Topics: 49625
  • Online Today: 218
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 4
Guests: 147
Total: 151

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: First Post  (Read 13146 times)

0 Members and 1 Guest are viewing this topic.

Offline tryingtostay

  • Member
  • Posts: 285
First Post
« on: April 03, 2014, 05:22:18 PM »
Hello all. 

     Where to begin.  I have so many concerns about my health.  Ironic, huh.  I hope to live a long life.  I am not a strong person in a lot of aspects.  Mentally most.  Although I've come from a job where I use to run things, and that actually gave me the opportunity to grow socially.  Never enough to get the right girl but enough to reassure my confidence in my self enough to be liked.

     With having so many questions would it be appropriate to keep them in one thread or start a new one when it arises? 

     It feels good to be here and talk. 

     A few days after suspecting my health was in question I went down to my local bath-house and had a gum swab.  A few days later I went and had my blood spun to confirm.  I recently had my blood sent off for results which leads me to my first concern because I am having very odd contradicting symptoms. My VL hasn't came back yet but 10 other test results have came back:

GC & CT Amplified Testing
Blood Count Complete Auto&Auto DIFRNTL WBC
Comprehensive Metabolic Panel
Hemoglobin Glycosylated A1C
Lipid Panel
Assay of Thyroid Stimulating Hormone TSH
CD4 Panel
Toxoplasma Antibody IGG
CMV Antibody IGG
Hepatitis Profile I
RPR W/RFLX Titer+FTA+CONF

Comments and Results on CD4 Panel:
CD3+ T CELL %   83   
CD3+ T CELL NO.   3483   
CD4+ CD3+ T CELL %   41      
CD4+ CD3+ T CELL NO.   1730   
CD4 INTERPRETATION   CD4+ T cell excess. This can be observed in a variety
of disorders including          
CD4 COMMENT   Clinical interpretation of lymphocyte subsets must be
made with caution.
 

     I've always supplemented vitamins, herbs, protein drinks.  Almost 20yrs. 

     The past 2 months my health has declined rapidly.  I am now at the point where if I don't take vitamins and supplements 2-3 times daily I will be constantly dizzy like I just got off a merry go round, zero energy - I need to eat (loss of appetite) just to stay slightly above miserable with no energy ETC ETC.  My point to all of this is about the meds but what scares me is that my CD4 count is already fairly high.  "Abnormally high" which leads me to believe there are complications beginning to rear their head.  Does this seem logical?  I'm guessing either colon or prostate Cancer.  (20 mins goes by) I've just emailed my Doctor requesting a screening for colon and prostate cancer. 

     Well if there seems to be anything anyone can help me with please do.  I'm hoping that things are simply because of the infection and not arising complications because I could not live normally in this state the next 30+ years.

     Thank you for your time, and support.

tryingtostay

Offline buginme2

  • Member
  • Posts: 3,292
Re: First Post
« Reply #1 on: April 03, 2014, 05:29:05 PM »
Hello, welcome, couple of clarifying questions.

1.  Hand you had a confirmatory hiv test?  You were positive on a western blot test? 

2.  The lab tests you posted do not give us very much information and anyone here is going to be hard pressed to make much sense of them.

3.  Why are you jumping to colon cancer and prostate cancer?  That seems like a big leap. 

4.  Are you in therapy? 

Oh, they like it if you keep all your questions to one thread, it's easier that way.

Don't be fancy, just get dancey

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,245
  • How am I doing Beren ?
Re: First Post
« Reply #2 on: April 03, 2014, 05:32:21 PM »
Welcome to the forum ... If I am reading this post correctly you are saying that you tested positive using the oraquick test but have not been conformed by a western blot as of yet . Is this correct ?

Please know that you are not diagnosed with HIV until a western blot test is done to confirm it . Please only post in this one thread until you are confirmed as HIV positive . Thanks .   

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #3 on: April 03, 2014, 05:49:06 PM »
Hello, welcome, couple of clarifying questions.

1.  Hand you had a confirmatory hiv test?  You were positive on a western blot test? 

2.  The lab tests you posted do not give us very much information and anyone here is going to be hard pressed to make much sense of them.

3.  Why are you jumping to colon cancer and prostate cancer?  That seems like a big leap. 

4.  Are you in therapy? 

Oh, they like it if you keep all your questions to one thread, it's easier that way.


     Hello and thanks for posting. 

1.  Yes the Western Blot came up positive.

2.  I kinda figured.  Again though, 1730 on my CD4 count.  Makes me wonder why I am feeling the way I am.

3.  The area/region seems to be slightly inflamed.  The other night I drank 1 16% bottle of water and within an hour I went to the bathroom 4-5 times (wiz walk) or urinating.  My bowel movements are rarely solid, moderate in color range too.  I'll have to re-check and compare against the Bristol stool chart.  I understand that seems like a 'big leap' but given my history and how HIV effects the system I am suspicious from my symptoms and seeking ways to prevent the opportunity of problems arising.

4.  I am scheduled to see the doctor the 11th but that may be too early as my case worker moved it to sooner from the 16th.  I might also go to a Psychologist.  I am a bit paranoid right now, I actually broke down and cried before I got the courage to join here.

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #4 on: April 03, 2014, 05:50:58 PM »
Welcome to the forum ... If I am reading this post correctly you are saying that you tested positive using the oraquick test but have not been conformed by a western blot as of yet . Is this correct ?

Please know that you are not diagnosed with HIV until a western blot test is done to confirm it . Please only post in this one thread until you are confirmed as HIV positive . Thanks .

     Hi Jeff, and thanks for replying.  The WB test also came back positive. 

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,245
  • How am I doing Beren ?
Re: First Post
« Reply #5 on: April 03, 2014, 05:59:20 PM »
A cd4 count of 1730 is excellent and in the normal range .

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #6 on: April 03, 2014, 06:23:59 PM »
A cd4 count of 1730 is excellent and in the normal range .

Re: 1730

     Since about a week before having my blood drawn from the doctor to assess the HIV, my symptoms started getting to the point of un-livable.  Before I searched what nutrition is essential to prevent problems I was taking some immune strengthening herbs called Echinacea as well as other supplements.  I'm hoping those are my normal results and not skewed because of the vitamins and herbs.  The big concern is that I can't do daily functions.  I'm not even employed right now.  And what little energy I have it burns out in about an hour or two then I'm back to those flu like symptoms, dizziness, etc.  I've not felt 100% in 2-3 months but with CD4 results like those I am getting really paranoid because the results are, from what I know, contradicting to my knowledge. 

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #7 on: April 04, 2014, 05:29:34 AM »
Welcome to the forums, Trying.

Echinacea is NOT recommended for hiv poz people. From the University of Maryland: "You should also aovid echinacea (Echinacea spp.) and astragalus (Astragalus membranaceus). These two substances show conflicting evidence of enhancing immune function and strengthening replication of the HIV virus in test tubes." source

You need to be aware that not everything going on with you will be directly connected to hiv. We are still susceptible to all the other ailments out there and it can be all too easy to blame everything on hiv. With your CD4 count, it's not likely that hiv IS the culprit. There could very well be something totally unrelated going on.

I would suggest that rather than self-diagnosing, you hang on until you can see your doctor and let him or her do the diagnosing. Let us know what your doctor says when you go next week.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #8 on: April 04, 2014, 09:13:58 AM »
Welcome to the forums, Trying.

Echinacea is NOT recommended for hiv poz people. From the University of Maryland: "You should also aovid echinacea (Echinacea spp.) and astragalus (Astragalus membranaceus). These two substances show conflicting evidence of enhancing immune function and strengthening replication of the HIV virus in test tubes." source

You need to be aware that not everything going on with you will be directly connected to hiv. We are still susceptible to all the other ailments out there and it can be all too easy to blame everything on hiv. With your CD4 count, it's not likely that hiv IS the culprit. There could very well be something totally unrelated going on.

I would suggest that rather than self-diagnosing, you hang on until you can see your doctor and let him or her do the diagnosing. Let us know what your doctor says when you go next week.

Ann


Thank you Ann :)  I didn't know that, and I will.

Offline tryingtostay

  • Member
  • Posts: 285
Re: cd4 counts of 1700, higher than normal range
« Reply #9 on: April 04, 2014, 12:32:23 PM »
Before I knew it was a bad idea to supplement Echinacea I was taking 1k mg a day a few days before going in to have my blood drawn for CD4 count and VL count.  I've gotten my CD4 count back and I am at 1730  Could the Echinacea have skewed the results?

My CD4+ results including CD3+
CD3+ T Cell % - 83%, Normal Range 60-89
CD3+ Cell No. Count - 3483
CD4+ CD3+ T Cell % - 41%
CD4+ CD3+ T Cell No. Count - 1730

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #10 on: April 04, 2014, 01:28:34 PM »
I've finally identified that I am having mental stress.  Before I learned I was positive I noticed my ability to deal with mental stress was declining.  Now I can't even physically handle mental stress.  I am near debilitated from it.  I can't even watch a movie with one of the characters being mean to another, it upsets me tremendously.  This is not a joke. 

Can this be related to HIV, and if so is it reversible through the HIV meds?

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #11 on: April 04, 2014, 01:48:04 PM »
Trying, I've taken your post above out of someone else's thread and put it here with your original thread. Rather than posting all over the place, it would be better for all concerned if you kept all your issues in one place at this point.

Are you sure you had a Western Blot test done? It's not on your list of tests that you had done in your first post.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #12 on: April 04, 2014, 01:53:37 PM »
Trying, I've taken your post above out of someone else's thread and put it here with your original thread. Rather than posting all over the place, it would be better for all concerned if you kept all your issues in one place at this point.

Are you sure you had a Western Blot test done? It's not on your list of tests that you had done in your first post.

I'm positive.  Haha, I seen what you did there, haha jk, but yes the WB was done and confirmed positive.  I'll edit my first post for clarification.  I am now waiting for the genotype resistance testing and VL results. 

EDIT: seems as though I can't modify my opening post
« Last Edit: April 04, 2014, 01:58:14 PM by tryingtostay »

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #13 on: April 04, 2014, 04:55:33 PM »
Does the increased need for nutrition go back to normal after getting on meds?  I just almost went into shock a few minutes ago from not eating since 10am.. it's now 5pm.. it almost felt like an anxiety attack

Offline tryingtostay

  • Member
  • Posts: 285

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,245
  • How am I doing Beren ?
Re: First Post
« Reply #15 on: April 04, 2014, 10:23:33 PM »
Does the increased need for nutrition go back to normal after getting on meds?  I just almost went into shock a few minutes ago from not eating since 10am.. it's now 5pm.. it almost felt like an anxiety attack

If you eat a well balanced diet you should be OK . I would suggest you cut back on your vitamins and supplements and see if you feel better . From what you shared about not being able to go a few hours without some kind of supplement without feeling ill might not be what you think . Have you considered that the supplements might be making you ill instead of making you better ? 

You need to be asking your doctor these questions because ultimately its going to be between you and him to get to the bottom of this . Your lab results look good to me so its not HIV that's making you sick from looking at what you shared so far . Hopefully someone that has a better understanding can advise on your labs results . Anyone ?

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #16 on: April 05, 2014, 12:15:30 AM »
Some of the stories from 'Gladstone Scientists' are giving me a sense of hope but I am skeptic.  I don't know if I'm reading published garbage to help seek funding, or if these findings are sound solutions.  I don't know what to make of this...

Activation of dormant virus key to purging viral infection; developing a cure for HIV/AIDS  I'm new to all of this so please forgive me if this isn't credible information.  Seems like it's a sales pitch for funding.

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #17 on: April 05, 2014, 12:21:24 AM »
If you eat a well balanced diet you should be OK . I would suggest you cut back on your vitamins and supplements and see if you feel better . From what you shared about not being able to go a few hours without some kind of supplement without feeling ill might not be what you think . Have you considered that the supplements might be making you ill instead of making you better ? 

You need to be asking your doctor these questions because ultimately its going to be between you and him to get to the bottom of this . Your lab results look good to me so its not HIV that's making you sick from looking at what you shared so far . Hopefully someone that has a better understanding can advise on your labs results . Anyone ?

I am considering it and trying to take a closer look at my diet.  I may just not be eating enough during the day.  I know I've been having serious anxiety attacks and a lack of appetite.  I'm going to try and eat more tomorrow without any vitamins. 

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #18 on: April 05, 2014, 05:42:14 AM »
Some of the stories from 'Gladstone Scientists' are giving me a sense of hope but I am skeptic.  I don't know if I'm reading published garbage to help seek funding, or if these findings are sound solutions.  I don't know what to make of this...

Activation of dormant virus key to purging viral infection; developing a cure for HIV/AIDS  I'm new to all of this so please forgive me if this isn't credible information.  Seems like it's a sales pitch for funding.

We have an entire section of the forums dedicated to research. Oddly enough, it's called the Research News and Studies forum.

We encourage people who are interested in the latest research to keep their conversations about it in there. Please check through the threads (or use the forum's search facility) to see if a study you want to discuss is already being discussed before you start a thread about it.




     I've always supplemented vitamins, herbs, protein drinks.  Almost 20yrs. 

     The past 2 months my health has declined rapidly.  I am now at the point where if I don't take vitamins and supplements 2-3 times daily I will be constantly dizzy like I just got off a merry go round, zero energy - I need to eat (loss of appetite) just to stay slightly above miserable with no energy ETC ETC.


Vitamins and supplements 2-3 times daily?!?!? Please do some reading:

http://www.nlm.nih.gov/medlineplus/ency/article/002596.htm

http://www.bbc.co.uk/news/magazine-24563590

http://www.webmd.com/food-recipes/features/effects-of-taking-too-many-vitamins

And if you're still not questioning your supplement schedule, google vitamin overdose and wise up.

Please. For your own good. Just because something is "natural" or a vitamin doesn't mean that it isn't potentially harmful.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #19 on: April 05, 2014, 08:30:00 AM »
I just got a message from my Doctor and a result.  There was a number:
HIV QUANT RNA BY PCR,  87, copies per milliliter.  I haven't spoke with him because this was an automated thing.  I'm guessing my VL is 87 ?   

Offline mecch

  • Member
  • Posts: 12,169
  • red pill? or blue pill?
Re: First Post
« Reply #20 on: April 05, 2014, 08:51:29 AM »
It takes awhile to adjust to hearing an HIV diagnosis.
It takes awhile for the medical system to figure out where a newly diagnosed person is, and plan and start the next steps. 
If anxiety is a major issue, you may want to include a therapist in this process.  Or someone who has a cool, outsiders take on what is happening.  If you are really really gripped by anxiety, you might benefit from some anti-anxiety medicine.  Also, finding a time each day to cut off from all the things you are obsessing about.

It sounds to me that you probably spend a large amount of time learning about, thinking about, and timing and taking supplements. What is going to bake your cookie, is that HIV is controlled through HIV medicine.  That's it. It's simple. 

Don't project HIV into your supplement world view, and don't apply you supplement world view onto HIV.   

Frankly, if you give up the supplement thing, you'll have a hole in your attention field, so don't then start researching HIV cures and treatments. A little bit is fine.  Enough to know the general terrain of things.  Basically, its the doctors', and researchers' jobs, to do all that and know all that.  This is just my opinion, of course, but I'm sharing it with you out of empathy and a hunch about some of what is going on. 

What is it you do in life.  And what do you enjoy in life.  Take an HIV diagnosis as an opportunity to spend more time out of your body and health - let the experts deal with that, for the moment.  Otherwise it will overwhelm your attention,  will feed anxiety levels, and will take away from the quality of the things in life you must do (job?) and like to do.

Does that make sense?
« Last Edit: April 05, 2014, 08:55:03 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #21 on: April 05, 2014, 09:09:30 AM »
I just got a message from my Doctor and a result.  There was a number:
HIV QUANT RNA BY PCR,  87, copies per milliliter.  I haven't spoke with him because this was an automated thing.  I'm guessing my VL is 87 ?   

All your lab results are adding up to look like you aren't actually hiv positive, or if you are, you are very likely to be what's called a Long-Term Non-Progressor (LTNP), which is someone who is lucky enough to have the genetic make-up that allows them to control hiv without meds.

A viral load result of only 87 is very, very, very possibly a "false" positive. VL tests can do this sometimes and it is why they are not relied on as diagnostic tests.

Are you absolutely SURE you had a Western Blot test?

As your VL result has had the effect of making the question mark hanging over your alleged hiv diagnosis even bigger, I need to request that you limit your forum participation to this thread only, until you've actually seen a doctor and have some real, concrete answers.

I'm not saying any of this to be mean - far from it. I fervently wish for you to be hiv negative and that's a good thing. Mistaken hiv diagnoses are fairly rare, but they can and do happen. We had a woman posting here recently who was misdiagnosed and her doctor actually had her go as far as to give her newborn baby AZT after the birth, when there was no need whatsoever. Please make sure you are actually poz! 

You're seeing a doctor this coming Thursday, right? If I were you, I'd be asking the doctor to re-run an antibody test, make doubly sure a WB test has been run, and possibly a re-run of a VL test, making sure that an RNA PCR - not a DNA PCR - test has been used. The DNA VL tests are quite prone to false positive results, moreso than the RNA tests.

Is this doctor you're seeing an Infectious Disease doctor or an hiv specialist? If not, you may need to find one before you can really get to the bottom of what's going on.

Keep us posted.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #22 on: April 05, 2014, 09:13:53 AM »
BTW, I should have mentioned that pregnancy and autoimmune conditions can cause false positive antibody test results, and sometimes they just happen. This is why we've been asking you if you're 100% sure you've had a WB test run, because the WB test is what's used to rule false positive antibody results out.

An autoimmune condition could quite possibly be the underlying cause of your recent symptoms.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #23 on: April 05, 2014, 04:24:12 PM »
HIV QUANT RNA BY PCR87 copies per milliliter.

The 11th is a Friday and not a Thursday

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #24 on: April 05, 2014, 07:16:54 PM »
The 11th is a Friday and not a Thursday

'Scuse me!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #25 on: April 05, 2014, 08:25:10 PM »
'Scuse me!

Sorry Ann, didn't mean any offense by :) 

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #26 on: April 07, 2014, 05:50:09 PM »
Can current meds reduce the inflammation from HIV ?

I think this article explains a lot about where I am at and the symptoms I am having.  If anyone knows more about how the meds will work in relation to inflammation please help me out here.  I've had my doctors appointment moved up from Friday to this Wednesday. 

Offline tryingtostay

  • Member
  • Posts: 285
Re: Uncertainty, Chronic Illness and HIV: Sage Advice
« Reply #27 on: April 07, 2014, 11:03:32 PM »
I am new to this so please excuse me if I am out of my boundaries for asking but does inflammation ever become under control, and if it's done by meds can proper nutrition help also?

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #28 on: April 08, 2014, 06:13:23 AM »
Trying, I removed your above post from the Long Term Survivors forum and put it here with your original thread. I've already asked you to stay in this thread for now:

Trying, I've taken your post above out of someone else's thread and put it here with your original thread. Rather than posting all over the place, it would be better for all concerned if you kept all your issues in one place at this point.


Also, as someone who has only recently (and only possibly) been diagnosed, you are NOT permitted to post in the LTS forum. Only people who were diagnosed before 1996 are permitted to post there - even I'm not permitted to post there unless I've got a good reason, and I'm the forum's admin person. Do NOT post in that section of the forums again, even if you do turn out to actually be poz. Thank you for your cooperation.

Can current meds reduce the inflammation from HIV ?

I think this article explains a lot about where I am at and the symptoms I am having.  If anyone knows more about how the meds will work in relation to inflammation please help me out here.  I've had my doctors appointment moved up from Friday to this Wednesday. 

From the article:

" They had higher amounts of virus in their blood, and those higher levels were associated with inflammation."

Your viral load is practically undetectable. Only just a few years ago you would have been undetectable as the tests only went down to around 500. Once again, it is highly unlikely that hiv is the cause of your symptoms.

You may be some kind of rare outlier, but I rather doubt it.

You really need to hang on for your appointment (good to see you've brought it forward to tomorrow) when you can work with the doctor to find out what is actually going on. As I keep saying to you, there could be something else happening that has nothing to do with hiv. With your numbers it is highly unlikely to be hiv causing any of it.

I mentioned in a previous post that autoimmune conditions can cause false positive hiv antibody results - and you need to be aware that they almost always cause some level of chronic inflammation.

Good luck tomorrow. I hope you get some answers to all these question marks hanging over your situation and your hiv status. Keep us posted - but in THIS thread please! :)
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #29 on: April 08, 2014, 02:45:13 PM »
My stats say that I am nearly undetectable with a high CD4 count.  VL 87, CD4 1730.  This would indicate that I should be no where near inflammation.  Everything I've read up about inflammation and the foods and nutrients to keep inflammation down has proven helpful.  I've included CoQ10, Omega 3 Fatty acids EPA & DHA, vitamin B1, vitamin A (beta carotene) in along with my diet but the persistent tightness in my chest, swollen hands and feet, and pain in the left side of my neck and shoulder persists.  These are symptoms of constrictive pericarditis, one of the more severe levels of pericarditis.  Pericarditis is caused by a few things, and you guessed it, HIV.  Whether the HIV is in the Pericardia tissue or is just effecting the tissue it is a serious story.  I am not aware if HIV meds can penetrate the tissue barrier.

A lot of people hate people that self diagnose.  I say that you are crazy not to investigate about your own health.  I am not a doctor.  I am trying to stay alive.
« Last Edit: April 08, 2014, 02:59:48 PM by tryingtostay »

Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #30 on: April 08, 2014, 03:17:54 PM »
I don't think the intent of anyones advise is to beat you up about "investigating" your own health...not at all.  As a nurse, I applaud anyone who wants to take such an active role in participation.

However, that being said...webMD, google, wiki, etc...can all be causes of madness. Because so many things have so many possible symptoms (often times many are the same), people have a tendency to start reading these things and psyche themselves out. That's when the "oh my god...I have _____ and ____ and ____" start kicking in. Pretty soon, they're thinking worst case scenario and really causing themselves a ton of undue stress and turmoil. Sometimes, so much stress they really DO start having symptoms. So, use the internet (if you must) as a general guideline for research, not a diagnostic tool. (For that matter, if you're at the library reading medical books, make sure you have a professional sitting right beside you to help interpret the literature and facts within). Leave the rest to your team of medical professionals.

Why do you think pericarditis? I just did a quick google search myself...didn't even touch any of the assessment or diagnostic books on my shelf and the symptoms you describe could also be: high blood pressure, fluid overload, hypernatremia, congestive heart failure, ascites, any number of liver problems, chronic inflammatory conditions, drug side effects, lung disease, allergic reaction...to name a few.

Again, stop panicking. Take a breath. You'll die stressing yourself out doing this. You're right...you aren't a doctor...we have those for many reasons...this is one of them. Go to your doctor...(also please don't ever say "I take that little blue bill, and the square white one and that yellow one with the line in it"...I'll slap ya).
« Last Edit: April 08, 2014, 03:29:12 PM by Bizkits »

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #31 on: April 08, 2014, 04:14:31 PM »

Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #32 on: April 08, 2014, 04:52:05 PM »
Ok.  Lets assume all the symptoms you have are possible symptoms of pericarditis. Now what:

 Diagnosing Pericarditis

The doctor will take your medical history and ask you to describe your symptoms. You’ll have a physical exam. Your doctor will listen to your heart to see if it makes certain sounds (pericardial rub) and certain tests may be done. These include:

Electrocardiogram (ECK or EKG). This test records the electrical activity of your heart. During an ECG, small pads (electrodes) are placed on your chest, arms, and legs. Wires connect the pads to a machine, which records your heart's electrical signals.


Lab tests. Samples of blood or pericardial fluid may be taken and tested in a lab. These tests can help determine the cause of pericarditis.


Imaging tests of the heart or chest. These may include X-ray, MRI, and CT. They create pictures of the heart or the inside of the chest. An MRI (magnetic resonance imaging) scan uses magnets and radio waves. A CT (computed tomography) scan uses X-rays and a computer.


Echocardiogram (echo). This test creates a moving picture of the heart. During an echo, a probe moved over the chest sends out harmless sound waves. These create a picture that shows the size and shape of the heart. It shows how well the heart is working. It also shows whether fluid has built up around the heart.


Radionuclide scanning (also called nuclear medicine scanning). This test creates a picture showing the structure of the heart. It also shows how well the heart is functioning. A low-level radioactive substance is injected into a vein or taken by mouth. The substance collects in the heart. There, it gives off gamma rays (similar to X-rays). A special camera takes pictures of the gamma rays.
 
When to Call the Doctor

Be sure to call your doctor if you have any symptoms of pericarditis. This is especially important if you have chest pain. Without treatment, this condition can be life-threatening.

This information is taken direcly from Krames On Demand Interface. It's the one medical library we are authorized to give patients information directly from. That says something. If you think you have pericarditis, have you done any of the above? Do you know what a pericardial rub sounds like? Can you perform and check your own ekg-what about interpreting it? What lab equipment do you have to perform tests, have you drawn your own blood? How about a chest x-ray...etc...Or have you just been looking around on the internet for general symptoms?

Seriously...more often than not, people who have pericarditis are REALLY, REALLY sick. Most times when someone first starts developing it, symptoms are so minor they don't notice them. It gets bad quickly. Often times they cannot even leave the house because just a few short steps will cause them to turn blue and fall down. They are oxygen dependant, too..weak at times to the point they cannot lift a teddy bear. They cannot speak in full sentences, they turn anemic and pale. There is treatment, sure but it depends on the extent of the condition.

 My best friend died of pericarditis: that was after getting it from a staff infection he developed post-tonsilectomy. He received a heart transplant after a year and battled organ rejection for 2 years, coding on the table and being brought back painfully (and it is painful) before he finally gave up the fight for good. It's not pretty to watch anyone die for any reason.

Now is the time to focus on hiv. That is what we are here for...to talk about and to help support eachother. You'll find your ID provider can answer a lot of questions for you or direct you to another if it doesn't pertain to them.

So, I respectfully repeat myself: Go to the doctor. If you aren't going to, get off the damn internet and focus on enjoying your life.

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #33 on: April 08, 2014, 05:53:18 PM »
I think it's either that or early signs of a heart attack.  Yes.  I get winded extremely quickly.  I can't chat for too long as I get tired.  I couldn't follow my brother around at Home Depot and bs because my lungs were being taxed too much.  This morning while trying to eat a croissant I almost threw up.  Like I said twice a day I feel as though I am going into a heart attack.  My limbs get extremely weak and my body starts to slightly spasm

EDIT:  I am going to see the Doctor tomorrow.  My first problem is that I haven't been working since late February.  And so I need to find or apply to the coverage I was given while working. 

I've trying to figure out what my symptoms are from by researching on the internet.  I'm batting a thousand as the last thing I found I was having was an appendicitis which after reading symptoms then calling my doctor, he recommended I go to the emergency room immediately and by late that night I was told by the on-call doctor that I had an appendicitis.  So here is hoping to regaining my heart strength :)
« Last Edit: April 08, 2014, 06:21:23 PM by tryingtostay »

Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #34 on: April 08, 2014, 06:50:30 PM »
Glad to hear you're going to the doc. I'm sure not having insurance is stress enough. Obtaining coverage would be a great first step but I know what a huge burden and expense that can be, even now with ACA (which in my opinion isn't that great...but that's another topic for debate). Have you looked into any community resources that may be available to you as far as city or county clinics?

I know it's hard to not instinctively want to try to look for yourself whats wrong. What you're describing, though sound like valid symptoms that you should be concerned about. Only you know your body. But I can't emphasize enough the importance of proper diagnosis. This ensures that you KNOW what is wrong and how it needs to be treated. This can only be done by diagnostic tests performed by doctors. Unfortunately it can't be done by internet research and guessing. You may be able to come a little closer to guessing, though by considering what your personal history is: what medical problems have you had in the past, or anyone in your family which would lead up to heart problems? What risk factors do you have? Any bad infections (other than hiv), do you smoke or drink, PAD, lung diseases, diabetes? and so forth and so forth. It's hard to understand how to put all the puzzle pieces together, which is why you need a doctor to do that for you. I know you're in a difficult spot and it's probably very scary. Sometimes doing your homework so to speak can help ease your mind, but sometimes it does just the opposite, which seems to be the case here. Stress can make a lot of problems worse, too. Here's a link you should at least take a look at: http://www.stress.org/stress-effects/ .

Focus on what you can control. For what you can't, take it one step at a time.

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #35 on: April 08, 2014, 08:09:20 PM »
Thanks.  I am curious, was your friend HIV positive?  I am hoping with all my good will that he wasn't.  Logic would say that it's the road I might be headed down.  And did he have his heart replaced due to the Pericardia?  I hear sometimes HIV can get into the tissue of our bodies. 

The place where I got my test Ora-quick, then Western Blot test done enrolled me into a care program.  I am going to look into Medicaid again.  There might of been some confusion on some of the questions and due to my situation of recently being unemployed I may have slipped through a crack in the questions.  Currently I have a case worker working for me and my county does qualify as a class 1 er something that is eligible for federal funding.  So in that respect I am covered but if my heart condition is unrelated I am going to have to re-open my app for Medicaid or find something = yes this part might be stressing.. The one good thing is that my city has the best heart care in the world the only mission is to re-enroll in my previous companies health insurance program and I think I'm going to have to bring this up to my case worker again. 

I understand and if I weren't having these symptoms I would be 99% fine with my health outlook.  The only thing that stands out as a Risk factor is the job I did the past 20yrs.  Haven't smoked in 20yrs, rarely drink, some family history of diabetes, but nothing that I can think of that would of been a risk factor. 

I have looked into a heart nutrition guide LINK by the Cleveland Clinic.  Even though it might not exactly be my diagnosis I think it's a great guide and plan to get on and with the Spring coming I see a lot of walks in my future.  I'm just curious about how fast will I see progress.  I'm thinking it might be all summer until I feel stronger.  And I'm thinking if I'm on some mild regiment for my HIV hopefully my recovery rate will be squared.  In the mean time I don't think I am strong enough to get back into the line of work I was in before and I think it's a good thing :) 

Thanks so much for the talk :)

Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #36 on: April 08, 2014, 10:33:59 PM »
Actually, to my knowledge he wasn't poz. He was in great health minus the fact he always worked himself so hard he was always exhausted. He just had his tonsils out...and developed a massive staff infection that traveled systemically and ended up in his heart. From there he developed pericarditis which caused so much damage he needed a transplant. For a little while after that happened, he seemed to be doing well again and then took a turn for the worse because he was rejecting the organ.

I guess I am a little confused about the health coverage? I was under the impression since you said you hadn't been employed since the end of February, and then said you hadn't applied for it since you weren't under any coverage...How would you re-enroll in your previous employers healthcare program, cobra?

I don't have a whole lot of experience with heart patients; Not my specialty so I don't know numbers or how long it will take you to feel better. But, I speculate, like anything else, each case is different. And depending on your diagnosis, treatment plan and goals, your doctor may be able to give you an estimation, but I doubt an absolute.

Activity is great for the mind and body, even something as simple as a walk. Just know your limitations and don't overdo it.

Can I ask what line of work you were in?


Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #37 on: April 08, 2014, 11:47:39 PM »
I'm sorry about your friend :'( 

I too have tried to maintain certain aspects of my health, and I too have always worked myself hard at my job.  Where I use to work my reputation as a hard worker preceded me. 

My coverage is sorta confusing.  If I am having problems un-related to being HIV+ I might not be covered so I'll have to find a way to pay for Cobra.  I still have that option until Mid May.  A few days after work ended they notified me of my health care coverage cancellation with an offer to continue coverage for up to a year. 


Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: First Post
« Reply #38 on: April 09, 2014, 06:32:02 AM »
How much vitamin A are you taking? That's definitely a vitamin you can overdose on. http://www.mayoclinic.org/drugs-supplements/vitamin-a/safety/hrb-20060201

Make sure you tell your doctor what supplements you are taking and in what amounts.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #39 on: April 09, 2014, 08:53:57 AM »
Thanks, it's ok. He's been gone for about a year now and towards the end he was suffering so bad and looked so pitiful, he would only allow his parents to see him. But he's at rest and in a better place now.

Cobra is so friggin expensive, would you qualify for coverage under aca for a lesser expense? You mentioned something about medicare/medicaid? How are your hiv needs taken care of (just curious on my part)? Is that through the county, you said?

I hear ya about working hard. Been there done that myself, too. It will take the life outta you after a while.

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #40 on: April 09, 2014, 10:10:33 AM »
Ann

     There is a drink on the market by Bolthouse that's all natural carrot juice.  Ironically it's one of the things that I noticed help the swelling/inflammation go down.  Over the past few days I've drank maybe 20-28oz of it.  The vitamins that I need to watch are the ones I'm supplementing for my heart which include 50mg of CoQ10 x2 3 times a day, Triple Strength Fish  Oil 3-4 times a day, SAM-e 200mg twice a day.  I do have others that I take infrequently that I don't think would get to the overdose mark but I should mention all of them to the Doctor today to see if there are any interactions :)

Bizkits

     I'm not familiar with ACA.  There is another program that I might be able to get help from.  My case worker mentioned a few.  I was really hoping for Medicaid.  I think I'm going to check my application for questions that would conflict with my current conditions of unemployment.  I filled it out a few weeks ago and from being dizzy a-lot I can't remember clearly what I might of fell through.  I think Cobra might be 300$  month for Health and Dental.  I'm going to see what the doctor says about my meds today and if he's going to look into my symptoms I've been having that I'm assuming are heart related.  Scares and saddens me that I do have them at this low a viral load.  Yes, the county gets federal funding.  I think there are 18k reported cases of HIV. 

I'll post later today about my visit to the Doctor's office.  Hopefully I will be able to get on meds that will have the least side effects. 

Thanks everyone :)





Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #41 on: April 09, 2014, 10:42:14 AM »
Yes, please keep us posted. (Just remember too, as I'm learning myself, just because you have hiv, not every other ailment is related to that).

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #42 on: April 09, 2014, 03:38:49 PM »
My genotype results aren't in yet so there is no determination yet so he is still screening for my other symptoms.  I do have HIV.  He did mention that I may be an elite responder because generally upon infection the VL count is very high then comes down and levels out but not at my level.  He mentioned < 75 as being an elite responder.  We talked about my high CD4 counts and that is a sign of inflammation but that is what we are still screening for.  It's too early to tell but he has me on Omeprazole to see if my symptoms I've been complaining about are heart related or not.  I have a supply of 30 for this coming month.  By this diagnosis and prescription it looks as though my symptoms were from related to my early digestive organs.  It's not clear what.  It's only been 3-4 hrs since I first took Omeprazole so I will refrain from describing how I am feeling.  Lets just say it's no where near how I have been feeling ;)

Offline pittman

  • Member
  • Posts: 237
Re: First Post
« Reply #43 on: April 09, 2014, 11:41:49 PM »
I urge you to take steps to care for your mental well being as well, and not just your body.  You seem to be seeking a more holistic approach to your health already.

Your anxiety level and stress will affect you, and as you are newly diagnosed you are facing some acute stressors right now. Taking ownership for your care is a good thing, and your posts seems to indicate you are willing to make extensive efforts.

Seeing a therapist or psychiatrist may help you more quickly adjust and find a balance to your efforts and round out your care.

Offline Bizkits

  • Member
  • Posts: 105
Re: First Post
« Reply #44 on: April 10, 2014, 11:05:12 AM »
Glad to hear some positive effects have been had already. Hope they continue :)

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #45 on: April 12, 2014, 09:11:49 PM »
Hello all.  I'm finally learning how to self-help myself against my own thoughts and turn them into positive affirmations.  It's tough but I am getting by, and I think the spring time (exercise like walking) n extra bit of sunlight is helping out.  I do have seasonal depression but I think most people do.. hence the extra Vitamin D3.. but too much and I can feel a down-swing off them.. but anyways just a few thoughts I have.  I go back to see the  Doctor on the 18th.  My resistance / geno type tests will be coming back soon.  Are there good results and bad results?  If so what are they?  Does the dizziness ever go away?  On a good day it comes n goes maybe 10 times a day but mild.  On a bad day sometimes I am completely cloudy up in my noodle.

Offline zach

  • Member
  • Posts: 1,907
Re: First Post
« Reply #46 on: April 12, 2014, 10:09:32 PM »
hey man, hope you don't think i'm being out of line here, jumping in with advice without welcoming you and all that. (welcome, and all that)

imho

the internet is a dangerous pool to swim around in. i think its normal for all of us to over educate and overwhelm. just lean back, get used to the ride a little bit. too much information will drive you nuts. avoid the herbs and hippy dippy folk remedies, some work, most do not. just try to live healthy. and don't get hung up on numbers that damn fine already.

you're not just going to wake up one morning and everything be better. but one day, you're going to wake, and realize everything is better.  ???

Offline tryingtostay

  • Member
  • Posts: 285
Re: First Post
« Reply #47 on: April 12, 2014, 10:38:28 PM »
Hi Zach, and thanks for the reply.  Yeah I understand.  I know I can be my own worst enemy and I do get a little worked up when I try n logically think things threw and that can sometimes mean a lot of questions that I seek on the internet.  I am guilty of that for sure.  Sometimes it helps,, sometimes I feel the anxiety start to kick in and that's when I either try n learn to understand my anxiety and how I physically react to it.  Enough about me, how are you?  I hear you are back from the hospital.  Hope everything is alright with you and getting better! :)

Offline zach

  • Member
  • Posts: 1,907
Re: First Post
« Reply #48 on: April 12, 2014, 11:19:49 PM »
i think these days, we're all gonna be fine

questions are great, and everybody here having gone through the same emotions and anxieties we're all gonna try to calm people down first. so ask the questions, over and over, just don't let those nagging thoughts eat at you

Offline Theyer

  • Member
  • Posts: 2,593
  • Current ambition. Walk the Dog .
Re: First Post
« Reply #49 on: April 13, 2014, 05:10:24 AM »
hey man, hope you don't think i'm being out of line here, jumping in with advice without welcoming you and all that. (welcome, and all that)

imho

the internet is a dangerous pool to swim around in. i think its normal for all of us to over educate and overwhelm. just lean back, get used to the ride a little bit. too much information will drive you nuts. avoid the herbs and hippy dippy folk remedies, some work, most do not. just try to live healthy. and don't get hung up on numbers that damn fine already.

you're not just going to wake up one morning and everything be better. but one day, you're going to wake, and realize everything is better.  ???

100% agree.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.