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Author Topic: First Post  (Read 13060 times)

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Offline tryingtostay

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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

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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

Online Jeff G

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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

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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

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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. 

Online Jeff G

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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

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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

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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

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"...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

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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

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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

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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

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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

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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

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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

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Online Jeff G

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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

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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

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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

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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

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

Offline Bizkits

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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

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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

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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

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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

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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

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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

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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.
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"...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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

Offline tryingtostay

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Re: First Post
« Reply #50 on: April 13, 2014, 11:04:26 PM »
Since I'm not on meds, and with my numbers, what/how should I normally be feeling through-out the day?

Offline pittman

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Re: First Post
« Reply #51 on: April 13, 2014, 11:10:31 PM »
Since I'm not on meds, and with my numbers, what/how should I normally be feeling through-out the day?

Not to be snarky, but you should feel what ever it is you feel.  That is to say, with your numbers, you probably aren't feeling anything specific related to the HIV other than your anxiety.

Offline zach

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Re: First Post
« Reply #52 on: April 13, 2014, 11:56:29 PM »
i had gas today, maybe it was from the meds (ann keeps talking about that side effcect, i think she just farts alot ;) or maybe it was from the binge of 10 ice cream sandwiches i ate at 3am last night. you've got enough reality to deal with right now, don't go looking for every little thing to be a portent of doom

trust us, right now you're fine, and chances are good you will always be fine. but if, heaven forbid, you ever do get sick, there will be NO doubt, at all. and every little thing, will be put into stark perspective.

enjoy your life man. go grab somebody that feels good and hug them. things like that are what you might miss one day. don't let the good times pass you by over needless worry.

Offline buginme2

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Re: First Post
« Reply #53 on: April 14, 2014, 01:17:09 AM »
Since I'm not on meds, and with my numbers, what/how should I normally be feeling through-out the day?

What are you expecting to feel?  I've been positive for years..today I ran five miles this morning, played with my dog on the beach for awhile, walked about 2miles to meet friends for lunch at an awesome seafood market (fish tacos to die for), ran some errands, dinner, more errands, sat on the beach with a coffee and watched the sun go down, now watching Tv and reading the internet.

My point.  Go about your life.  Get on meds when you can and hopefully you will live a long normal life and feel just like everyone else. 


i had gas today, maybe it was from the meds (ann keeps talking about that side effcect, i think she just farts alot ;) or maybe it was from the binge of 10 ice cream sandwiches i ate at 3am last night.

enjoy your life man. go grab somebody that feels good and hug them. things like that are what you might miss one day. don't let the good times pass you by over needless worry.

Ha! that made me laugh

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Offline Joe K

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Re: First Post
« Reply #54 on: April 14, 2014, 04:46:29 PM »
Trying,

I agree with other posters who have warned you about excessive vitamins and supplements.  I have been poz for 3 decades and I have seen all the snake oil and magic cure claims and vitamins/supplements are the newest form of it.  Your body can only absorb so many vitamins/minerals and the rest you just piss away.  A daily vitamin and one Omega-3 supplement is all you generally need.

Taking excessive amounts of vitamins/minerals/supplements can cause many issues and may very well be the cause of some of your current problems.

Please review with your doctor EVERYTHING you take and that includes energy or any supplemental drink or powder, because you can overdose on these things.

You do not need most of the supplements you have mentioned.  You cannot supplement your way to proper nutrition, however, you can do major damage to yourself by abusing said supplements.

Joe

Offline tryingtostay

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Re: First Post
« Reply #55 on: April 15, 2014, 11:46:34 AM »
Thank you all for the replies :)

 I really sure hope the things I am feeling are due to Anxiety.  I had a friend over last night to talk with me about different avenues for financial support for meds and a lot of the anxiety started to re-surface.  After he left I went to my brothers house and hung there with my mother and all the Dateline news was about death.  Before I knew my HIV status I was mentally declining over issues like that and I still am.  I sure hope meds change this and my other symptoms around  :'(

Online Jeff G

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Re: First Post
« Reply #56 on: April 15, 2014, 12:07:56 PM »
The way your labs are looking you may not need meds for a long time, possibly never if you are a non progressor . 

Offline tryingtostay

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Re: First Post
« Reply #57 on: April 15, 2014, 01:03:36 PM »
Could it just possibly be slowly making copies from being in the Clinical latency stage?  I mean I've seen a lot of stories with low viral loads that progress.  What else I'm wondering about is my Geno and Pheno tests but I'll have to wait and hope and see if I will be able to have a good combination of meds to choose from that don't get me sick, and that I can take once a day.  I know people keep talking about my numbers but how I feel just has me so puzzled.  Whatever I end up being whether a non progressor, a slow progressor, or an elite responder I hope my body rejects that little nasty bugger.  Can they administer meds till the viral load is UD for a non-progressor and then lower the dosage?  I know I would screw up and think my body is ok and take a few days off.  I couldn't even consistently take my vitamins every day. 

Well sorry for the continuing thought salad.  It helps me to write things out.  Thanks all.

tryingtostay - healthy and alive! :)

Online Jeff G

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Re: First Post
« Reply #58 on: April 15, 2014, 01:17:04 PM »
You are not in any danger as far as HIV is concerned at this moment ... so it would be in your favor to wait and see what your new labs reflect . I think you are suffering from anxiety and overexposure to vitamins from what I am hearing ... its for sure not HIV making you sick at this point in time . I am not qualified to give a medical opinion so this is just my opinion on what facts I have a available to form one . Its not easy to hear but the best advice I can offer is to hurry up and wait  ;)

Offline Ann

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Re: First Post
« Reply #59 on: April 15, 2014, 01:36:01 PM »

What else I'm wondering about is my Geno and Pheno tests but I'll have to wait and hope and see if I will be able to have a good combination of meds to choose from that don't get me sick, and that I can take once a day.


There's a very good chance that they won't be able to do a geno or phenotype test - your viral load is too low.

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Offline zach

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Re: First Post
« Reply #60 on: April 15, 2014, 02:06:12 PM »
man, you are tossing out words you just shouldn't know at this point. seriously, you're healthy, focus on that and staying that way

everybody hopes they are elite non progressors. few are. i kind of think its a legend.

do not mess around with your med dosages because you think you're better, that is not the way it works.

Offline tryingtostay

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Re: First Post
« Reply #61 on: April 17, 2014, 08:55:06 PM »
Thanks for the replies.  Going to see the doctor tomorrow morning.  Hope everyone has a great weekend! 

Offline tryingtostay

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Re: First Post
« Reply #62 on: April 18, 2014, 10:18:05 PM »
Can HIV cause digestive tract disorders?  My doctor seems to think that I have an upper intestinal ulcer but I can't recall the last time I've felt the burn for indigestion.  ???  I do feel a little discomfort but it's not like it's burning all day. I still get weak fast.  I was out cutting the lawn today with a self propelled lawn-mower and within a half hour I was totally weak.  My heart was racing, and later on while at diner I thought I was having an anxiety attack and I felt like throwing up a bite of food I was about to eat. 

Offline pittman

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Re: First Post
« Reply #63 on: April 19, 2014, 07:34:08 AM »
I read that it can have an effect on the mucus lining, as that is a part of your immune system.  In fact, there is a recent study talking about the effect early treatment has on this, linked from the front page right now: http://www.poz.com/articles/gut_inflammation_761_25450.shtml

However, I have never heard of that being so acute as you seem to describe, and you may be closer to the mark with describing as an anxiety attach.  Make sure you let your doctor know of your symptom.


Offline tryingtostay

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Re: First Post
« Reply #64 on: April 19, 2014, 08:56:43 AM »
He switched me from Omeprazole to Zantac and prescribed me Zoloft.  I took both last night before going to bed and at 3am I woke up sweating and shivering with diarrhea.  It's now 9am and I am still in the same condition.

Offline pittman

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Re: First Post
« Reply #65 on: April 19, 2014, 09:45:07 AM »
I'm not sure if diarrhea is a prevalent side effect or not for either of those. Read the drug insert and check with your doctor.  Of course you could just have a stomach bug on top of it all.

I hope you get past it and feel better soon.

Offline tryingtostay

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Re: First Post
« Reply #66 on: April 19, 2014, 11:35:57 AM »
All three of those symptoms are side effects of Zoloft. 

It's hard talking to the person I most trusted with my condition.  I mentioned the article posted above.  There is a strong sense of denial that I keep confronting with that person.  I guess there really is no other approach they can take because there simply is nothing else they person can do about my condition.  And given all the numbers I have it does seem odd about my acute symptoms. 

Online Jeff G

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Re: First Post
« Reply #67 on: April 19, 2014, 11:43:44 AM »
People can offer support but you know only you and your doctor can fully address what to make of your symptoms . We all learn sooner or later when we are living with HIV not everything is HIV related or med related .

Offline zach

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Re: First Post
« Reply #68 on: April 19, 2014, 02:27:25 PM »
read the side effects of almost any script

diarrhea and thoughts of suicide

largely meaningless legalese to protect the manufacturer, one dude may have opted out, couple guys may have had the runs... now mass panic from it

Offline Kardean

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Re: First Post
« Reply #69 on: April 19, 2014, 09:20:05 PM »
People can offer support but you know only you and your doctor can fully address what to make of your symptoms . We all learn sooner or later when we are living with HIV not everything is HIV related or med related .

So true.... but just how do we sort them out?  I still have a problem with that one  :(

Online Jeff G

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Re: First Post
« Reply #70 on: April 19, 2014, 09:34:49 PM »
So true.... but just how do we sort them out?  I still have a problem with that one  :(

You must find a doctor you can trust that will work with you . Tryingtostay is in a unique situation in that he has excellent lab numbers but is not feeling well ... it does not sound like HIV is making him sick so the best course is to manage his stress and continue to work with his doctor to find out what's up .

 

Offline Kardean

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Re: First Post
« Reply #71 on: April 19, 2014, 09:57:48 PM »
You must find a doctor you can trust that will work with you . Tryingtostay is in a unique situation in that he has excellent lab numbers but is not feeling well ... it does not sound like HIV is making him sick so the best course is to manage his stress and continue to work with his doctor to find out what's up .

 

Oh Yeah.... It's not just me!   My doctor sort of sucks but I don't have a pool to choose from due to living in a very rural area.  Much like Tryingtostay (even though his numbers are better than mine), I have a hard time accepting some noticeable otherwise unexplainable conditions while currently maintaining good labs.

Maybe I just need to move :o

Offline tryingtostay

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Re: First Post
« Reply #72 on: April 19, 2014, 10:07:24 PM »
Any idea why the doctor wouldn't prescribe anti-bionics if he things I am having stomach ulcers?  I almost over-dosed on the Zoloft.  100mg.  Just took one last night and have been in a bad state the past 24hrs.  I looked up symptoms and I had a lot of them including one that recommended to see a doctor right away. 

I'm basically looking for natural remedies to help stomach ulcers.  I seem to be hyper-sensitive to any medication being given.  Omeprazole.  Zantac.  Zoloft.  Didn't even try Lorazepam.  Looked up the side effects and those are the worst out of all of them, wow!

Offline Kardean

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Re: First Post
« Reply #73 on: April 19, 2014, 10:15:55 PM »
Believe it or not, I recently read something that says eating apples is a good natural remedy for stomach ulcers, and as they say... An Apple Day Will Keep The Doctor Away.   :)

Offline tryingtostay

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Re: First Post
« Reply #74 on: April 19, 2014, 10:18:44 PM »
Believe it or not, I recently read something that says eating apples is a good natural remedy for stomach ulcers, and as they say... An Apple Day Will Keep The Doctor Away.   :)

Awesome!  I will look into that for sure! :)

What kind of conditions are you experiencing?  I seem to not be taking the prescriptions well.  It's crazy how bad these "medicines" can be.  And I heard people were dying just from the HIV Meds a long time ago.  I sure hope they have progressed since then or I might be in trouble in my circumstances :(

Offline Kardean

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Re: First Post
« Reply #75 on: April 20, 2014, 11:10:47 AM »
Awesome!  I will look into that for sure! :)

What kind of conditions are you experiencing?  I seem to not be taking the prescriptions well.  It's crazy how bad these "medicines" can be.  And I heard people were dying just from the HIV Meds a long time ago.  I sure hope they have progressed since then or I might be in trouble in my circumstances :(

Me..... weight & muscle loss thus weakness and strains.

Offline tryingtostay

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Re: First Post
« Reply #76 on: April 20, 2014, 12:54:03 PM »
Me..... weight & muscle loss thus weakness and strains.

I'm not on any meds yet but I seemed to have lost 10 pounds since January/February and also feel a little weak.  I'm on the younger side of middle age and I can accept that I can't work as hard as I use to but I didn't notice a gradual decline.  I didn't expect to be cutting the grass and then be winded, muscle weak, and sick by the time I was done. 

Offline Bizkits

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Re: First Post
« Reply #77 on: April 21, 2014, 09:18:05 AM »
Tryingtostay,

   I haven't kept up with this thread totally, but I'm gathering you've been to the doc, are having some more problems, are on zoloft and experiencing GI effects? And in addition it is suspected you may have an ulcer?
 
   I do have a lot of experience in this area if I may chime in for a second: Zoloft first off is notorious for causing GI side effects such as nausea, constipation or diarrhea, bloating, abdominal discomfort, changes in appetite which can lead to weight loss or weight gain, etc...It can also cause weakness/dizzyness, headaches, drowsiness...It can be a nasty little drug. It works for a lot of people but for some it just causes more problems. It's also a clinically known fact that stress causes GI problems.

   It's hard to say if you have an ulcer or not just from what you're saying...I would ask you a few screening questions but they are rather personal and deal with all things your digestive tract is capable of so I will spare those off the public forum. Can you get a referral to see a gastroenterologist?

   

Offline mecch

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Re: First Post
« Reply #78 on: April 21, 2014, 08:02:25 PM »
Awesome!  I will look into that for sure! :)

What kind of conditions are you experiencing?  I seem to not be taking the prescriptions well.  It's crazy how bad these "medicines" can be.  And I heard people were dying just from the HIV Meds a long time ago.  I sure hope they have progressed since then or I might be in trouble in my circumstances :(

What are you going on about?  Are you a bit obsessive compulsive about medicine and supplements?
HIV medicine is fine and has been for years.  There is no need for hope. And hasn't your doctor told you these basic facts and haven't you read them, anyway.  Do you selectively remember everything bad on warning labels, or from 20 years ago, and ignore the good? 

Doesn't look like you are going to need HIV treatment for sometime. Why don't you use this time to try to figure out if really you are physically super intolerant and sensitive to medicine, or if this is a psychosomatic issue.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #79 on: May 15, 2014, 05:20:10 AM »
Warning, bummer post:

I have lost 4 pounds in the last 3 weeks.  I've been consistently weighing myself with the same amount of clothing on in the morning before breakfast.  I also have early signs of dementia.  I am extremely forgetful even with the simplest of things.  I reach for one thing thinking I'm turning down the thermostat and I find my hand on the wall by the light switch without even knowing it.  I can't even remember where I put things in my own house.  For example I have to stop and think where I put most everything.  This has happened all within the past 2 months ... I can't even concentrate for a full sentence much anymore.  It takes me time to write these things out that I am telling you right now. Even simple sentences like this one.  Conceptual things are getting hard to put into words.  The peripheral neuropathy has sort of went away.  I get bad hunger pains frequently.  Still not on meds.

I've been reading a lot in the Research and News section and it helps give me hope, and hang on till there is a functional cure of some type.  The top 3 I've been watching are Calimmune, Zinc Fingers, and Bionor PHarma's "Kick, Kill & Boost" strategy  I've read read and re-read those posts trying to catch something I might have missed.  Are these all going well?

Offline zach

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Re: First Post
« Reply #80 on: May 15, 2014, 11:07:04 AM »
you've already self diagnosed a couple cancers and dementia so far. come on man. your problems are not hiv/aids related. not yet at least. talk openly with your doctor about your irrational fears.

you rant and rage about the side effects of meds, you're not on meds.

chill out with all the hippy fruits and berries. has a doctor told you of a vitamin deficiency or something?

your fears and anxieties about your health and meds are becoming unhealthy. bordering on OCD hypochondria

hiv is bad enough, all by itself. stop scaring yourself this way.

Offline absopozilutely

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Re: First Post
« Reply #81 on: May 15, 2014, 11:32:01 AM »
I can relate to how much you're self diagnosing and etc. Look, we're poz, that's not changing, you have numbers that people would kill for, you are healthy, anxiety and stress can cause all of the things you've talked about. Listen to Jeff and Zach and people on here, if there was something hiv related that was causing this you'd be In a hospital bed, and with numbers like yours, you having nothing hiv related to worry about right now. Really best advice is to take a deep breath, and probably take a bath relax your body. Once you accept that you have this, but that it's not going to kill you you'll start doing much better. Just weeks ago if I remember Zach was knocking on deaths door, I read posts about him daily, and look he's recovered and doing better. Like Rae-Lewis Thornton says, you must choose to live or choose to let the hiv live, once you've made that decision others will fall into place.

-Abso
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline tryingtostay

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Re: First Post
« Reply #82 on: May 15, 2014, 01:12:10 PM »
I'm so glad Zach is doing better! :)  I think I posted on his thread, I can't remember if I did.. but I remember reading it - scary all around I pray he keeps getting better! :)


I hate to go against the grain and keep saying that I'm sure of how my body feels but I 100% am completely aware of slight abnormalities.  Not trying to argue, just saying.  And I know this isn't the place to spill out all ones worries etc because we all need to be lifted spiritually, it is paramount, I just feel I need to do so to possibly get any feedback that may be beneficial.  The dizzyness accompanies the bad memory problems I've been having.  It seems to come and go but is more often around.  I remember before I learned all of this I was sitting upright in bed one day and I tried to move but I couldn't.  I sat there and couldn't bring myself to snap out of it.  That feeling comes around more often these days and it scares me because I normally never felt this before my infection time. 

In order for me to accept it I would have to disclose to everyone.  This means a lot of walls and barries I might face, and that is exponentially incomprehensible.  I mean one doesn't really accpet it if they keep it to themseles and avoid situations where it is important to share like with family members, a relationship, or sex. 
« Last Edit: May 15, 2014, 01:16:41 PM by tryingtostay »

Offline mecch

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Re: First Post
« Reply #83 on: May 15, 2014, 01:30:54 PM »
And I know this isn't the place to spill out all ones worries etc because we all need to be lifted spiritually, it is paramount, I just feel I need to do so to possibly get any feedback that may be beneficial.   
On the contrary, this IS the place to spill out ones worries...  Especially you if nobody around you knows you are HIV+...  Everyone here has HIV and together there is a lot of experience and knowledge. So you are supposed to talk about your concerns.  But people here may try to inform you of information and other perspectives. Especially if the anxiety seems free-floating, not based on something really tangible.

If you think you have cognitive decline, you go to the doctor, announce it, and get examined and tested. 

As an aside, you are putting the cart before the horse - obsessing about "working cures".  Hello!  Time to start getting a more down to earth ordinary day to day feeling about being HIV+.   If you need HIV treatment you will start treatment... Repeat: Treatment is just fine these days.

If you need drugs for attention, they exist as well. 

Do you work? Wondering if perhaps you have too much time on hand for meandering.  Maybe you need to apply your brain and time to something that returns positive rewards, intellectually, socially, financially, physically.... etc.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: First Post
« Reply #84 on: May 15, 2014, 02:39:29 PM »
I agree with the advice you have been offered today . I was about to post that this is  exactly the place to come and vent your frustrations but as I read on down I will leave it with Mecch's post ... it was spot on .

Please listen to the collective wisdom of this forum and consider that HIV is not the cause of all your problems and go see a doctor and find out why you are sick . I can tell you for certain if you do not deal with the anxiety and fear of living with HIV you are in for a rough time of it and wont fare well . I wish I had known to take my own advice early on in my infection and learned coping skills because it would have saved me many years of grief and damage that I did to myself .

I'm not special so if I can live with HIV for 30 + years you can too .

Offline zach

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Re: First Post
« Reply #85 on: May 15, 2014, 06:10:13 PM »
sometimes when i'm wallowing deep in anxieties and depressions... i drink too much, and/or eat to many pills (flavor of day, and lets be real, its and, always and, never or, usually more) then i post high!! long rambling barely legible rants, sometimes not even sure one hand is on the keyboard. one post a couple years ago i found recently looks like i passed out, forehead on the B, N, and spacebar... lots of b's in that post. i still bang away though. and usually it best represents how i'm feeling.

and no one. ever. not once. has told me "thats not what this place is for". i figure we're all allowed. sometimes i even put a disclaimer at the top of my posts.

don't misunderstand my previous post. you come here and write what you have to keep the demons at bay. you/we/all of us do that anytime you need/want, nothing anyone says different. especially me! hell, i'm just some dude with aids. still tweak out some days when i remember "shit, this aids"

just that sometimes we're gonna say, hey thats just demons, gremlins, and substances talking. thats ok, talk it out

just cause i made it home from a hospital room with a view, that doesn't mean shit. i'm no sage old wise man. i'm just some dude

what you see here, is me just starting to get this egg put back together.

so don't ever really listen too closely to me, tune me out as background noise. thats my message to everyone. just tune me out if i sound out of line. all the mods, if i get out of line, just shut me down. i never take it personal at all. usually i wake up in a day or so wondering what the fuck i said or did, then spend the next week taking inventory of the harm i caused.

ps... and jeff... you're special buddy, very special... i mean, alabama, come on  ;D

Offline tryingtostay

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Re: First Post
« Reply #86 on: May 17, 2014, 04:21:37 PM »
It's cool Zach!  And honestly I didn't see you post until after I posted my above post.  Maybe you time-wapred and inserted your post, haha.  Lets time warp back to before we were both positive and slap ourselves straight!  lol Hell lets do that for every member on board here!!!

I honestly don't know how to address everyone here who has been along for the ride.  A thanks is in order so far, much appreciated and Thank you all. 

I also want to apologize if my story has developed into an unbelievable one and put the perspective of your own troubles in comparison with mine.  I did not intend it this way.  This started out feeling like a sanctuary.  My emotions with my new found fight endlessly put the big microscope on my physical health but for good reason as I am not feeling the same as I did over a year ago.  But my point is that it blinds my dignity and my sense of boundaries as an interactive person here. 

gtg

 



 

Offline absopozilutely

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Re: First Post
« Reply #87 on: May 18, 2014, 12:39:27 AM »
Lol by slap yourselves straight I hope you're not inferring all people infected or that are a part of this forum are gay. While gay people make up a larger number of positive people they're not all gay. Yes, I'm gay, but have met people on here straight, so I'll assume you mean straight as in using condoms and making better choices.

With love,
Abso
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline mecch

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Re: First Post
« Reply #88 on: May 18, 2014, 06:27:27 AM »
  But my point is that it blinds my dignity and my sense of boundaries as an interactive person here. 


What blinds your dignity? Clarify if you care to.
Not sure I understand the second part of the sentence either.  Are you getting what you want or need here in the forum?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #89 on: May 18, 2014, 08:37:32 AM »
Lol by slap yourselves straight I hope you're not inferring all people infected or that are a part of this forum are gay. While gay people make up a larger number of positive people they're not all gay. Yes, I'm gay, but have met people on here straight, so I'll assume you mean straight as in using condoms and making better choices.

With love,
Abso

Bingo ;)  I just couldn't think of a better phrase to get my point across so I used that, meant no harm in it.  "Slap some sense" seemed to harsh, and "Slap ourselves right" just didn't seem to flow in the sentence.  I was not referring to sexual orientation.

....

What I meant was that my increased worries of my physical health seem to come across in conversation as a one sided non-filtered canvas of worry.  My lab results were good.  87vl and cd4 1730 - I'm not opening that up for further discussion my point is that I am aware that things should be ok and that I continue posting my health concerns. 

My dizziness is coming back right now and I am getting cloudy, got to go, ttyl

Offline zach

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Re: First Post
« Reply #90 on: May 18, 2014, 08:50:46 AM »
granny slapped me silly once

Offline mecch

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Re: First Post
« Reply #91 on: May 18, 2014, 08:34:06 PM »
Have you ever had consultations with a mental health therapist?
Seems to me you should be able to get clarification for the ways you don't feel well - but it will be combination of you GP and a mental health therapist.
You should feel free to express whatever you are feeling, here in the forum. Nobody is saying you should feel one way or another. My own contribution is that you need some attention to your mental health - for anxiety of course and possibly for ocd type thinking.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #92 on: May 18, 2014, 10:10:58 PM »
How is stomach and gut inflammation treated???  I constantly have a swelling in my gut and right side.  Do the meds stop this inflammation?  I think this is what's putting pressure in the middle of my abdomen and I think it's part of the reason why people have cardiovascular problems.  Sometimes I find I have a hard time breathing.  I am consistently waking up and having a weird type of reaction that resembles hypertension.

mecch.  The only ocd I have comes from the symptoms I am feeling.  I am 100% not my self from a year ago.

Offline pittman

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Re: First Post
« Reply #93 on: May 19, 2014, 12:28:51 AM »
How is stomach and gut inflammation treated???  I constantly have a swelling in my gut and right side.  Do the meds stop this inflammation?  I think this is what's putting pressure in the middle of my abdomen and I think it's part of the reason why people have cardiovascular problems.  Sometimes I find I have a hard time breathing.  I am consistently waking up and having a weird type of reaction that resembles hypertension.

mecch.  The only ocd I have comes from the symptoms I am feeling.  I am 100% not my self from a year ago.

Stomach and gut inflammation can be caused by multiple things.  Unless you know what the actual cause is, it would be hard to call out the best treatment. Bring it up with your doctor.

Dietary changes can help, especially one that limits simple carbs and sugars.  But see if your doctor can suggest/help determine any other causes as well.

Offline mecch

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Re: First Post
« Reply #94 on: May 19, 2014, 01:04:03 AM »
Have you ever had consultations with a mental health therapist?

Of course you don't have to answer. But I will point out that you avoided answering this question specifically. And that you are firm in you self diagnosis of your mental state.  And that part of your mental state, includes ruminative thoughts about your physical health.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline absopozilutely

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Re: First Post
« Reply #95 on: May 19, 2014, 02:12:56 AM »
Trying- you may consider talking to your doctor about GAD, or General Anxiety Disorder. You can use antidepressants to help or an anti anxiolytic like buspar, it will help you calm yourself about these med concerns. I think few of us are doctors, and were here for you, but like my friend tells me, quit overwhelming yourself. Accept that you're healthy. Out of anyone posting trust me MECCH is very honest and tells it like it is, if he thought something was wrong he'd say it, so would anyone here although we can only give so much advice, honestly it's not going to be hiv or anything else that's going to kill you, it's going to be self induced stress. Take it easy on you, stress weakens the immune system, remember that too.

Always,
Abso
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline mecch

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Re: First Post
« Reply #96 on: May 19, 2014, 04:23:46 AM »
Yeah I'm not an MD, not a therapist, and not that knowledgeable about all specifics about HIV treatment.
Tryingtosay, I was reacting two times in this thread to a feeling I get reading your posts. Others have noticed as well.
i had periods in my life when I suffered from anxiety disorder and also ruminative thoughts so just throwing that out there - maybe you should pursue some professional consultations about this.  "Feeling not right" is certainly real but the way to figure out what is going on is probably a doc and a therapist sorting through the possibilities..

I have physical manifestations of anxiety, sometimes. In the gut. Or hives. So anxiety can cause discomfort but the final answer is treating the anxiety not the physical manifestation...  Just might be one of the things that is going on with you.

Also note i said "OCD type thoughts" because its not to me to judge who is OCD or not its for a professional.  And people can have time periods, or areas of life, prone to obsessive or rolling thoughts, and there are ways out of the cycle.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #97 on: May 20, 2014, 09:11:05 PM »
I appreciate it guys.  I really do but I don't think my dizzy spells are related to anxiety.  If I am wrong could you enlighten me?  It's not a closed discussion I just don't think It's anxiety.  I started feeling this dizziness 7 months before I knew my status.  I've told my doctor about it but he seemed to shrug it off.  Of course because being dizzy could be from alot of things but this is the main thing I want to go away.  It's borderline debilitating.  I forget things constantly.  I've misplaced 3 in the past 48hrs.  I thought someone stole 2.  On bad occasions I cannot think and I lose control of my self where I can't move.  It comes around about an hour after I wake up and is steadily there all day long.  If it's from depression or anxiety I've never heard of such a thing.   ??? 

I am going to a GI doctor soon.  Waiting for a call to set up an appointment.  I am already on Omeprazole (prilosac) for my stomach.  I wasn't on it for the past 2-3 weeks.

I got my CD4 count back from my second test and I'm waiting for my VL to come next. 

Offline tryingtostay

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Re: First Post
« Reply #98 on: May 21, 2014, 11:15:19 PM »
Constant heart palpitations and shortness of breathe the past 3 days.  Great :(

Offline mecch

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Re: First Post
« Reply #99 on: May 21, 2014, 11:23:02 PM »
I appreciate it guys.  I really do but I don't think my dizzy spells are related to anxiety.  If I am wrong could you enlighten me?  It's not a closed discussion I just don't think It's anxiety.  I started feeling this dizziness 7 months before I knew my status.  I've told my doctor about it but he seemed to shrug it off.  Of course because being dizzy could be from alot of things but this is the main thing I want to go away.  It's borderline debilitating.  I forget things constantly.  I've misplaced 3 in the past 48hrs.  I thought someone stole 2.  On bad occasions I cannot think and I lose control of my self where I can't move.  It comes around about an hour after I wake up and is steadily there all day long.  If it's from depression or anxiety I've never heard of such a thing.   ??? 


Are you an expert on psychology and somatic symptoms? 

All the symptoms are really concerning and disagreeable, agreed.  I am repeating my question a third time - have you seen a psychologist, therapist or psychiatrist to get some expert opinion on these symptoms?

Maybe I've missed your answer, if so, I'm sorry.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #100 on: May 22, 2014, 06:53:14 AM »
Are you an expert on psychology and somatic symptoms? 

All the symptoms are really concerning and disagreeable, agreed.  I am repeating my question a third time - have you seen a psychologist, therapist or psychiatrist to get some expert opinion on these symptoms?

Maybe I've missed your answer, if so, I'm sorry.

No.  And No.  I'm just looking to get back to physical normality.  I'm familiar with depression in the experience from coming down off of a Vitamin D3 happy high and I don't think I'm in that depression state. I am also aware that I can get into depression swings for as long as 2 weeks after drinking alcohol.  I was never a drinker and haven't drank in maybe 10yrs and that if I did it was very infrequent. I was aware of the anxiety I would bring myself when reading stories of mortality on these forums but I haven't come close to that state in a while.  Things like the palpitations, swollen stomach and gut, swollen hands and feet with a slight bit of stinging, dizziness, forgetfulness, inflammation, stomach ulcers, etc.  These things are chronic too. I think Pittman's post # 63 made alot of sense in regards to my "ulcer" Link and the whole mucasal lining thing may go even further.  I've also noticed that I do not produce as much mucas from my chest anymore nor in my nasal passages.  The worst thing about all these stupid symptoms is that this GP doctor won't go ahead with meds because my VL in my first test was so low.  I am pressing him about possibly getting on Sevelamer Link but he doesn't seem to be listening to that.  If he doesn't I am seriously considering jumping off his ship.  No where have I read he's a specialist, he only has 3 yrs experience, and I think as a GP.
« Last Edit: May 22, 2014, 06:56:14 AM by tryingtostay »

Offline mecch

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Re: First Post
« Reply #101 on: May 22, 2014, 09:24:44 AM »
What is the downside to seeing what a psychiatrist has to say?
My observation is that I have the feeling you are overly involved in speculations about your various distresses and medical issues, and that the doctors are under-involved. You yourself report that you feel the doctors are not treating you comprehensively and aggressively. So you may be right. Or, possible, your view on the situation does not confer with the reality that the experts have investigated.
As I said, this is just my feeling and of course I don't know you and I want to say I am not denying or belittling how unwell you feel.
I would say it would be quite interesting to have another expert on mind/body have a look.  You can always chalk it up afterwards as useless. But, it might be helpful, for treating the entirety of your malaise.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #102 on: May 22, 2014, 10:29:51 PM »
Thanks mecch.  You are seem to be a very smart and well versed guy.  I appreciate your sensitivity. 

I spoke with my case worker today.  We had a good talk.  I agreed to go see someone, she said she'll call me back with an appointment. 

Got an odd question. Can someone not on meds suppress the virus to an undetectable VL, or maintain it to a low range/level?  Say maybe like an elite controller?

Offline mecch

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Re: First Post
« Reply #103 on: May 22, 2014, 11:24:32 PM »
Yes "Elite Controllers/non progressors"  and "Slow Progressors".  Your doctor should be able to tell you if you are one or the other but it may take many months to decide cause you need to see the trend. 
But you already know that presently you have extremely low viral loads.  ;D  So cross your fingers maybe you won the genetic jackpot...

Good luck with the referral.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #104 on: May 22, 2014, 11:54:19 PM »
Thanks. 

I know not to get too excited about early numbers as there needs to be a trend for such things.  I keep waiting to see the results posted for my VL.  We'll see tomorrow and if I don't get them back it'll probably be on Monday or Tuesday.  Didn't realize this was a holiday weekend coming up.  If you ask me now if I trust my case worker I'll tell you after I get my results back.  While on the phone with her she was somehow able to check my results, I don't know why.  I asked her why they weren't posted yet, it may be due to my doctor being busy getting ready for his vacation.  But if what she says is true I don't understand why he wouldn't post them.  Let's hope I can continue to trust my case worker.

Offline tryingtostay

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Re: First Post
« Reply #105 on: May 28, 2014, 04:12:06 PM »
Living as Undetectable whether from meds, a weak strain, or a non progressor/elite controller, and having a good CD4 % and count, what health risks are we still susceptible to from this virus? 

 

Offline AusShep

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Re: First Post
« Reply #106 on: May 28, 2014, 05:15:37 PM »
Before you get all caught up in that, what was your latest VL results that you were waiting on?

Offline tryingtostay

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Re: First Post
« Reply #107 on: May 28, 2014, 07:22:11 PM »
I'm just trying to learn what to adjust my life around like eating habits for certain issues.  For example I've just purchased some apples to try out for my stomach.  I haven't ate an apple in probably over 15yrs but I've learned it helps the stomach out.  Also every time I drink carrot juice by Bolt House i feel a significant relaxation in my stomach.  So these are the types of things I want to look out for and understand and address.

It's only been my second test and I'm trying not to pay too much attention to it because I know there has to be a trend with readings.  I am not on any meds and my numbers are looking interesting.  My CD4 count dropped from 1730 to 1309 and my % rose from 41 to 42%.  My VL results are odd.  Maybe just a fluctuation, or maybe it was due to the Omeprezole.  My Viral Load "Detectable for HIV-1 RNA by PCR, <20 copies/mL, not quantifiable" 

Offline AusShep

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Re: First Post
« Reply #108 on: May 28, 2014, 07:47:00 PM »
So the sort of summary I have is you tested positive are not on meds, cd4 1730, VL 87. 
Then about 6 weeks later your cd4 is 1309 and VL undetectable?

Which protiens and antibodies were present on your western blot? 

If you are a controller, you may want to check out some of the studies, such as this one.  http://ragoninstitute.org/hivcontrollers/

There are still health risks the studies are trying to understand, in addition to vaccine/cure info.  For instance, long term immune activation in order to keep the virus suppressed in controllers leading to chronic inflammation, maybe increased cancers, heart disease, or other problems; they have studies comparing controllers on/off ARVs to try and see if these are really problems, etc.

Offline tryingtostay

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Re: First Post
« Reply #109 on: May 28, 2014, 10:52:30 PM »
So the sort of summary I have is you tested positive are not on meds, cd4 1730, VL 87. 
Then about 6 weeks later your cd4 is 1309 and VL undetectable?

Correct.  Also my percentage went from 41 to 42%

Which protiens and antibodies were present on your western blot?
 

That I don't know.  I just emailed my Doctor and asked him that question.  I'll find out hopefully in a day or two.  If not I see him on the 4th of next month and will find out.  Are there better results than others?

If you are a controller, you may want to check out some of the studies, such as this one.  http://ragoninstitute.org/hivcontrollers/

There are still health risks the studies are trying to understand, in addition to vaccine/cure info.  For instance, long term immune activation in order to keep the virus suppressed in controllers leading to chronic inflammation, maybe increased cancers, heart disease, or other problems; they have studies comparing controllers on/off ARVs to try and see if these are really problems, etc.

Ok.  I'll have to ask my doctor about it.

So basically people who are EC have more of a risk ending up in a hospital due to cardiovascular or other problems from complications, great :(
« Last Edit: May 28, 2014, 11:24:18 PM by tryingtostay »

Offline AusShep

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Re: First Post
« Reply #110 on: May 28, 2014, 11:26:42 PM »
That I don't know.  I just emailed my Doctor and asked him that question.  I'll find out hopefully in a day or two.  If not I see him on the 4th of next month and will find out.  Are there better results than others?


There have been studies on banding differences between slow and rapid progressors, such as absence of a strong p15 or p41 being more common in rapid progressors.  Mostly, just curios if you have the minimum bands or many.  I just have p41 and 120/160.  Most people have them all, or all but one.  Average disease progression seems slower in those with unusual patterns overall, but it's been a long time since I've read up on it.

...
So basically people who are EC have more of a risk ending up in a hospital due to cardiovascular or other problems from complications, great :(

It's one of the things they're looking at, no idea if it will be true or not.  You can always follow the cdc and take meds anyway...
« Last Edit: May 28, 2014, 11:29:09 PM by AusShep »

Offline tryingtostay

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Re: First Post
« Reply #111 on: May 28, 2014, 11:37:48 PM »


There have been studies on banding differences between slow and rapid progressors, such as absence of a strong p15 or p41 being more common in rapid progressors.  Mostly, just curios if you have the minimum bands or many.  I just have p41 and 120/160.  Most people have them all, or all but one.  Average disease progression seems slower in those with unusual patterns overall, but it's been a long time since I've read up on it.


Where would I read information/studies like this at?

Offline AusShep

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Re: First Post
« Reply #112 on: May 28, 2014, 11:55:22 PM »
Where would I read information/studies like this at?

Like I said, mostly just curious, but also making sure the confirmation was done given the low then UD VL. 
Giving these a quick read, the unusual patterns may be more for both rapid and slow progressors vs. normal, but just read the stats very quickly.  I really wouldn't read too much, or anything really, into it as far as your particular results.

Early Navy study
http://www.sciencedirect.com/science/article/pii/S1047279796000531
http://www.dtic.mil/dtic/tr/fulltext/u2/a458697.pdf

Indian study
http://ispub.com/IJID/6/2/8784
http://www.ncbi.nlm.nih.gov/pubmed/17050930


Offline tryingtostay

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Re: First Post
« Reply #113 on: May 30, 2014, 08:53:38 AM »
One condition I constantly have and am curious if others do as-well is a constant inflammation feeling in the middle of my sternum accompanied with dizziness.  I don't know if it's a GI problem that's not healing correctly due to possibly HIV in the mucusal lining in that area or just normal inflammation due to this shitty virus.  Is this a normal thing with HIV?  It's making me more and more upset as the days continue on.

Offline tryingtostay

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Re: HIV associated neurocognitive disorder
« Reply #114 on: June 05, 2014, 06:42:57 PM »
I sometimes tend to shy away from people when I'm not up to "keeping up" with conversations, including posting here, although often I just don't really care if I appear to be a bit dizzy.

I know my ability to function has been slipping. It gets frustrating but if I focus on it it just gets me depressed. Better to go with the flow I guess and hope others understand. If not, oh well.

This is a reality I face and I feel the same way as what mitch777 has posted here.

I've had a steady dizziness since about 8-9 moths ago.  It seems to be progressing.  I was just about to type my age and it took me a second to realize I am a year older than I was going to post.  I have excellent numbers according to a Family Practitioner who specializes with HIV but I am starting to get curious about seeing if I can get to an ID doctor.  I was CD4 1730 @ 41% with a VL of 87, then this last test I shown a CD4 @ 1309 @ 42% & detectable but <20 copies without any meds.  It doesn't make any sense to have this brain fog with where I'm at with my numbers and recently dx'd. 

mitch777, I just read the link you posted Fat Marker cognitive decline...  Here is a little bit of interesting information.  I've been doing relatively fine with my brain fog/HAND until about 2hrs ago when I left the GI doctor.  Before I went to see this Dr I ate some BK fast food.  Classic Chicken Sandwich meal and fries, deal.  The brain fog just hit me pretty bad as I left the office.  I couldn't even remember where he told me to get my meds, and I am still wondering where I get my stool test kit as I don't see a "prescription" for it, only lab paper-work from it.  I can't remember wtf he told me.  Took me a long time to go through all the paperwork I had just to see if there was even a prescription for it.  So this garbage food binge I had may have had an effect on my noodle. 
« Last Edit: June 05, 2014, 06:51:49 PM by tryingtostay »

Offline tryingtostay

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Re: Re: HIV associated neurocognitive disorder
« Reply #115 on: June 05, 2014, 07:51:50 PM »
Remembering how my cognitive function use to be makes me feel I am locked in a prison that I can't get out of.  It's like looking out of a jail cell or as if I were dead when I remember my past cognitively functional healthy life.  I remember looking at these forums long before I was diagnosed and had a fear in the back of my head, that I didn't listen too.  I am feeling very down and regretful right now so excuse me for this post, sorry :(

Offline Ann

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Re: First Post
« Reply #116 on: June 06, 2014, 05:15:08 AM »
Trying, I removed your two latest posts from a thread in the Mental Health section and put them here in your original thread.

You do NOT have HAND. Your issues have nothing to do with HAND or hiv. All of them can be attributed to stress and anxiety, but you don't want to hear that or investigate it properly.

Please do NOT continue to hijack other people's threads with your issues, issues that don't have anything to do with hiv - or if they do, it's only related through the stress and anxiety that hiv seems to cause you.

Yes, this is a warning.

Ann
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"...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 zach

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Re: First Post
« Reply #117 on: June 06, 2014, 09:25:26 AM »
oh no?!?!?! ann!!!! I"VE GOT TWO OF THEM!!!!!   ;D

i dunno what turn this thread took, must read later. wtf is hand?

Offline Ann

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Re: First Post
« Reply #118 on: June 06, 2014, 02:49:39 PM »

wtf is hand?
 

HAND = Hiv Associated Neurocognitive Disorder. There's currently a thread in the Mental Health section started by one of our members who has been diagnosed with it. :-\
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"...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

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Re: First Post
« Reply #119 on: June 09, 2014, 07:30:25 PM »
How has everyone been doing? 

Me, I'm alright  :-\.  Just taking it day by day.  Moment by moment. 

Offline absopozilutely

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Re: First Post
« Reply #120 on: June 11, 2014, 01:48:56 AM »
How has everyone been doing? 

Me, I'm alright  :-\.  Just taking it day by day.  Moment by moment. 

Good! That's how you should take it! You're doing fine, say the serenity prayer a few times, and actually believe it. In fact, while writing this I just said it, it helps. It goes like this:
"God, Grant me the serenity to accept the things I cannot change, Courage to change the things that I can, and the wisdom to know the difference..." :) Glad you're doing better.

Always,

Abso!
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline eric48

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Re: First Post
« Reply #121 on: June 11, 2014, 10:41:24 AM »
So basically people who are EC have more of a risk ending up in a hospital due to cardiovascular or other problems from complications, great :(

With regards to brain fog here is my observation (on self):

until April 1 day of Dx: Nothing Nothing nothing
From April 2 : next day: brain fog, visions, chills
Started Meds in June : brain fog events which have lasted about 3 three years. They are gone now. I have not have one in the last 6 months

So , in my case, not HIV related, not meds related (most likely)

What about keeping your eyes OFF the internet and Dr Google for a week or 2 ... ?

One thing that has help me too... When I was referred to a specialist (neurologist, ...) they always ask me why I have full insurrance coverage. I tell them HIV... Then, every little peanuts thing that they find, they say HIV related. Since 1 year, I have changed that: I say Diabetes (which I do not have)
and then everything becomes, by magic, diabetes - related

You need to put things in perspective

let's have one: a recent re-analyses of the Swiss Cohort confirms that, yes, HIVers have a higher risk of cancers. But he goes further and restrict his database to non-smokers, and since HIVer in Schweis are not millions he finds ... nothing

With the paucity of HIVers who, like yourself, have hardly any detectable virus, which is so rare, I am so jealous, they will always find an additionnal risk. Like a doubled risk of heart attack... Which means, on very small cohorts, that they had 2 where they where expecting one ... Big deal ! Doubled risk ? Yes 2 divided by 1!
Did they had a look at smoking status, VHC and other things ? No... The only thing they care is putting out some paper with some findings, so that their little group can receive fundings

Look... CD4 1000+ VL < 200 that means your immune system does n't give a shit about the virus. Not that you should neglect it yourself... But, yeah... Come down , land on earth and be happy to be the happy winner

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline DodgerDawg

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Re: First Post
« Reply #122 on: June 13, 2014, 03:21:00 PM »
Dear Trying;

I love you! (well we're together, but not together). I actually thought I was sick! Rushed to the ER January 2014, diagnosed full blown AIDS, three AIDS OI's, emergency surgery one for upper chest tube, four days later emergency surgery for chest tube two, renal failure, sepsis, sepsis shock, three basil cell tumors one of which is my new best friend (thinking of naming it), on, and on and on... Oh spent 18 days in infectious ICU, another three weeks in a surgery recovery ward; CD4 count of 5, and a viral load of 1,800,000. Heck they told my family to make funeral arrangements! After reading this thread, I think I'm cured, at least of gory google gaggling (sp?).

In sunny southern California we have a saying: "DUDE IT COULD BE WORSE". Now that I'm feeling so much better, I'm going to the kitchen, prepare some fish tacos, and have some fine Mexican beers!

Take care, and thank you!  Kevin
January 2014 CD4 count = 5     VL = 1,800,000
June      2014 CD4 count = 206  VL = 48 UD

Offline tryingtostay

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Re: First Post
« Reply #123 on: June 18, 2014, 10:11:27 AM »
Thanks abso :)  Just doing things day by day.  Thankfully it's summer and I can get out and enjoy the weather.  Hate winter time.  Just being outside and doing things is very helpful.  It free's my mind from the silliness and other things.  I still wonder how I'll be down the road.  I have a few more questions for my Dr. 

eric48.  Thanks for reading my thread :)  I'm hoping these numbers turn into a trend and I don't need meds for a long time.  Just waiting to see how the numbers turn out.  I'm not too concerned over it right now which is good.  While I do see myself as fortunate in regards to medicating  I am dealing with troubles that I have never had before.  I guess I am still fortunate in regards to what others are going through.  I look at the research going on and see that they are approaching it in several different ways.  The first category that everyone seems to be hoping on is reducing the medicating from daily to infrequently.  They call it a functional cure.  Looks like the Calimmune study is one approach.  But for others like me what does that mean?  And then my group is more than likely not on the priority list.  I think for myself and others like myself the second category, our best hope is the Kick and Kill type strategies.  IMO I think the dosage amount of Romidepsin per patient may have been mis-judged.  A recent example of mis judging a dosage was in the case of the Little Couples Cancer Scare Another study I am hopeful about is Novel Approach to reactivating latent HIV  Anyways lets hope they find something soon so we can all live healthier lives. 

DodgerDawg.  Actually I never really was sick until Doctor Google told me I was!  Everything I looked up I had!  AMAZING!  Hehe ;)  I hope you are doing better, and enjoy that damn sunny weather out there! take care :)

So how is everyone doing, btw???

Offline thunter34

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Re: First Post
« Reply #124 on: June 18, 2014, 11:55:14 AM »
So how is everyone doing, btw???

FAAAAAAAAAAAAAAAAAAABULOUS!

I am without my psyche pills, and currently going through the beginnings of a manic phase, so wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!
AIDS isn't for sissies.

Offline tryingtostay

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Re: First Post
« Reply #125 on: July 11, 2014, 05:15:36 AM »
FAAAAAAAAAAAAAAAAAAABULOUS!

I am without my psyche pills, and currently going through the beginnings of a manic phase, so wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!

I'm very sorry to hear that.  Has things gotten any better as of late?


Not sure if anyone reads this thread any more but I am curious as to how some people get prescribed meds immediately after following dx?  For example I vaguely recall someone posting that the doctor started them on meds before finding out what meds work for his strain the best?  I understand there needs to be a reliable test of above 500 vl count to determine what meds work but these people seem to be getting meds before a reliable determination is made.  Am I missing something???

I'm curious mostly because I feel some neuropathy symptoms as well as a few other things, and wonder why wasn't I put on meds under the same conditions as others have been prescribed meds???  Again I understand a reliable test has to have > 500 VL to be determined but these other posters are saying they were immediately put on meds.  What difference in factors am I missing between my comparison?  The biggest that sticks out is my possible dismiss of their CD4 count being on the low side but I can recall stories where that wasn't an alarming factor.  Maybe the posters didn't include or write out exactly what happened along their timeline, hmm.  I don't know, it's just weird, and more so I'd like to put off any slowly progressing problems like the one's I am living with. 


Anyways, thanks if you are still around and listening.  Hope everyone has a wonderful weekend :)

Cheers

Offline Irish Eyes

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Re: First Post
« Reply #126 on: July 12, 2014, 03:48:08 PM »
Yes, we are all here.
I also wondered about those getting meds immediately.
My guess is that they didn't included all the details for a full and complete story.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43

Offline tryingtostay

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Re: First Post
« Reply #127 on: July 13, 2014, 09:25:41 AM »
Yes, we are all here.
I also wondered about those getting meds immediately.
My guess is that they didn't included all the details for a full and complete story.

More than likely.  Hmm. 

I just wish I could start something as this numbness is spreading throughout my body more and more.  The back of my head is now constantly numb.  My concentration is getting worse I've also noticed.  I tried nutrition geared for neuropathy about 3 months ago and I noticed a burning through my body immediately upon starting it, then I read up on it and it's said to be common when the nerves are starting to heal.  It was obviously working but I stopped too soon and now the same nutrition doesn't help things out.  I just hope my nerves haven't reached the "dying back" state.  Can the HIV meds of today stop the progression of this neuropathy?


Offline tryingtostay

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Re: First Post
« Reply #128 on: July 25, 2014, 12:06:53 AM »
I've gotten a referral to a Neurologist. 

Offline tryingtostay

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Re: First Post
« Reply #129 on: July 25, 2014, 04:23:56 PM »
Can meds clear HIV from the spinal fluid?

Online Jeff G

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Re: First Post
« Reply #130 on: July 25, 2014, 05:02:57 PM »
Can meds clear HIV from the spinal fluid?

No ... They can't .

Offline tryingtostay

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Re: First Post
« Reply #131 on: July 25, 2014, 05:06:37 PM »

Offline tryingtostay

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Re: First Post
« Reply #132 on: September 07, 2014, 11:34:14 PM »
Got some labs back.  Still waiting on the VL.  There are a few things I don't get.  What is a CD3 + T Cell NO. - 3247  - lymphocytosis ?

Offline tryingtostay

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Re: First Post
« Reply #133 on: September 08, 2014, 07:21:28 PM »
Got some labs back.  Still waiting on the VL.  There are a few things I don't get.  What is a CD3 + T Cell NO. - 3247  - lymphocytosis ?

Does anyone have an idea what the CD3 + T Cell no means or should I ask somewhere else

Online Jeff G

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Re: First Post
« Reply #134 on: September 08, 2014, 07:25:50 PM »
Here is a source to answer some of your questions http://www.aidsmeds.com/articles/Introduction_4702.shtml

Offline tryingtostay

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Re: First Post
« Reply #135 on: September 08, 2014, 07:35:59 PM »
Here is a source to answer some of your questions http://www.aidsmeds.com/articles/Introduction_4702.shtml

Thanks Jeff.  I briefly went through it.  I didn't see any CD3 + T Cell NO. reference.  I'll ask my doctor about it.  It's just hard to communicate with him via email board, he usually never responds.  As it's looking so far my CD4 numbs are ok, 1655.  I'm assuming the VL will be low - Hopefully.  If it is then the little indicator of lymphocytosis will be what I'll want to look into, and possibly detoxing my lymphatic system.  I know it's not a cure for HIV but if it's the cause of my tired and dizziness then maybe I can get a little improvement here n there on it.  It would be a big improvement from my perspective. 

Online Jeff G

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Re: First Post
« Reply #136 on: September 08, 2014, 07:38:58 PM »

Offline tryingtostay

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Re: First Post
« Reply #137 on: September 08, 2014, 07:44:03 PM »
I googled and got this . http://www.ncbi.nlm.nih.gov/pubmed/22686509

uuUUUuu, yer googre fru is veddy veddy honorabru!  haha
« Last Edit: September 08, 2014, 07:49:53 PM by tryingtostay »

Offline BKKKevin

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Re: First Post
« Reply #138 on: September 08, 2014, 10:51:09 PM »
Are you taking vitamin supplements 2-3 times a day at the reccomendation of a doctor?... What effect do you think all those vitamins have on your liver, urinary track and stools?...

Offline tryingtostay

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Re: First Post
« Reply #139 on: September 08, 2014, 11:47:45 PM »
Are you taking vitamin supplements 2-3 times a day at the reccomendation of a doctor?... What effect do you think all those vitamins have on your liver, urinary track and stools?...

No I am not taking supplements 2-3 times a day at a doctors recommendation.

I assume you want to answer the second question by yourself so go ahead. 

Offline tryingtostay

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Re: First Post
« Reply #140 on: December 16, 2014, 01:18:41 PM »
Recent labs report my VL has changed and gone up, half way between 100-200.  No where near where others have had but it's enough to where I'm constantly weak and feel sick.  My CD4 is the highest it's been almost 1900s.  I'm battling this sick feeling everyday and daily I'm mentally in and out of a dark place.  I'm starting to experience Vertigo.  My liver ALT and AST numbers are above the normal.  My WBC is above normal.  My Lymphocytes, Eosinophils, and Basophils are also above normal.  I feel like I have a flu everyday.  Slightly feverish.  The usual symptoms are still with me and I'll write them down as I have made a list to bring to my new doctor come Feb. I enrolled in an Insurance plan so I will no longer be dealing with this health care I currently am with.  I might move up the start date to Jan.  I will be covered by Aetna Gold.  I have looked up and found a couple of ID doctors in my area that I will visit before I decide on a doctor. 

Anyways this journey sucks and I WISH I would of known about PreP 2yrs ago. 

Offline mecch

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Re: First Post
« Reply #141 on: December 16, 2014, 02:11:09 PM »
I hope you get a good doctor who will give you a diagnosis that you can believe and work with.
I would bet money that your malaises are not due to an active HIV infection but I am not a doc!  If an ID tells you it might be about HIV, then start treatment.
If an ID tells you its not HIV, then get an alternative diagnosis.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #142 on: December 16, 2014, 02:28:21 PM »
I hope you get a good doctor who will give you a diagnosis that you can believe and work with.
I would bet money that your malaises are not due to an active HIV infection but I am not a doc!  If an ID tells you it might be about HIV, then start treatment.
If an ID tells you its not HIV, then get an alternative diagnosis.

Thanks mecch.  I most certainly will.  I was interested in getting an MRI or fMRI but with all the screw ups with the social worker from the Gastro visit, and then uncertainty with further tests like an MRI I decided to wait.  It will be one of the things I push for unless the doctor wants to discuss meds which I will be looking to talk about further with everyone on here.  I am still with my current health care doctor and have another blood drawl to look at my elevated liver numbers, right after the holidays. I'll be with him either till then end of the year or till the start of February in 2015. 

Good to hear from you, Have a Merry Christmas/Happy Holiday,

Cheers

 


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