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Author Topic: First Post  (Read 70520 times)

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Offline Joe K

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Re: First Post
« Reply #150 on: January 19, 2015, 01:38:08 pm »
Doin ok besides my usual issues, just wish my brain would work a little better

I've read your entire thread and maybe I missed it, but have you seen a neurologist about your mental issues?  Or a psychiatrist and/or therapist to explore other possible causes?  It seems to me that you insist that all your issues stem from HIV, without exploring other options that can have just as serious effects on your body and mind.

Joe

Offline tryingtostay

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Re: First Post
« Reply #151 on: January 19, 2015, 05:39:28 pm »
I've read your entire thread and maybe I missed it, but have you seen a neurologist about your mental issues?  Or a psychiatrist and/or therapist to explore other possible causes?  It seems to me that you insist that all your issues stem from HIV, without exploring other options that can have just as serious effects on your body and mind.

Joe

Hi Joe, and thanks for asking.  Not yet, but I plan to once this insurance kicks in.  I'd like to get to the bottom of it.  It seems no one believes me and yet I've never complained about things like this up until about 6 months before my Western blot confirmation which was early March 2014. 

Current flags from my Blood:
My WBC is above normal, normal range - 3.70 - 11.00 k/uL, result = 12.36 k/uL.  My Absolute Lymphocytes is above normal, normal range - 1.00 - 4.00 k/uL, result = 6.30 k/uL. My Eosinophil count is above normal, normal range - 0.00 - 0.45 k/uL, result = 0.49 k/uL.  My Basophils are above normal, normal range - 0.00 - 0.10 k/uL, result =  0.37 k/uL

CD4 Panel flags:
CD3+ T CELL NO.    Normal Range 958 - 2388 Cells/uL    result = 3730
CD4    Normal Range 533 - 1674 Cells/uL    result = 1895




« Last Edit: January 19, 2015, 05:46:20 pm by tryingtostay »

Offline tryingtostay

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Re: First Post
« Reply #152 on: January 26, 2015, 12:20:24 am »
Haven't heard back from my doctor and I'm going to assume he isn't taking the time to answer my question.  With my immune, wbc, and lymphocyte cells being so high in count is it possible that I am not getting enough red blood cells circulating efficiently through-out my system causing Anemia type symptoms?  Is something like that possible?  I haven't been to the doc about it but I emailed him through the portal asking if any of my blood work has ever indicated possible anemia.  Like I've said I experience burning in my hands and feet on and off.  About a year ago it was really bad at one point.  I have cognitive issues.  Nasal mucus constantly has blood in it.  Etc Etc Etc. 

Thanks again for your time

Offline Jeff G

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Re: First Post
« Reply #153 on: January 26, 2015, 08:13:50 am »
I think you need to go see your doctor … we can’t diagnose you over the internet and if we were to hazard a guess most of us that know the details of your situation would tell you it has nothing to do with HIV so you better get to the doctor and find out what is making you sick . In april it will be a year gone by since you have been complaining of these symptoms and you still have not got the answers you need from your doctor as of yet .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
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HIV TasP
You can read more about HIV prevention here:
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PEP and PrEP

Offline zach

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Re: First Post
« Reply #154 on: January 26, 2015, 08:23:02 am »
i'm gonna echo what others have said... see your doctor.

you've been saying these same things about your mental health since early of last year when you first came here. i read back through your posts last night.

time for you to face this and stop wringing your hands. if you don't, it's because you choose not to, and there is nothing we can do to help that.

Offline tryingtostay

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Re: First Post
« Reply #155 on: January 26, 2015, 10:01:44 am »
I know.  I just haven't heard back from my Doctor yet and it kinda aggravates me.  Come Feb I will be under Ins..  I just thought I'd ask people with more experience than me.  I appreciate all you guys and gals do and the support. 

Offline tryingtostay

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Re: First Post
« Reply #156 on: January 26, 2015, 11:05:32 am »
I think what keeps driving me is that people say that I shouldn't be feeling any of this when I do and so I hope I can change this if it isn't from the HIV, that is what keeps me curious to finding out what is going on.  I just thought I'd mention that.  The stupid part is that it's probably the obvious reason.  The HIV.  ok, enough of this jibber jabber, back to calling to make an appointment for my new old doctor.  Use to see him before I lost my insurance due to work. 

cliff notes:
-lost my job early 2014
-found out i was + mid march
-at the time couldn't afford to continue insurance
-been waiting for insurance enrollment for 2015 while getting community care and assistance through the Ryan White foundation - May he rest in peace :(
-Jan 19 Louis Picker article is published:  Louis Picker finds HIV hiding in B cells follicles - i think of the meme "F this S, it's friday" lol.  the meme with the guys hands in the air.  Or the Bill Paxton line in Aliens "game over man, GAME OVER!" lol jk jk
-Feb starts my insurance.

ok cool, ttyl guys and gals later :)

Offline Jeff G

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Re: First Post
« Reply #157 on: January 26, 2015, 11:47:06 am »
he stupid part is that it's probably the obvious reason.  The HIV. 

You have not learned a single thing since you have been here have you ? If you still think HIV is the cause of your health problems you should be banned from the research forum on principal alone LOL .

I think what keeps driving me is that people say that I shouldn't be feeling any of this when I do

No one ever said you are not sick, we have simply stated that its not HIV that's making you sick .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Joe K

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Re: First Post
« Reply #158 on: January 26, 2015, 04:43:41 pm »
Tryingtostay,

As empathetic as I want to be, I have grave doubts about your whole story.  Anyone, who is as sick as you claim, yet has done nothing to discover the source of these maladies, just doesn't sit right with me.  It's been almost a year since you started this thread and you still don't have a clue as to why you are so ill.  You spend so much time whining on here about your poor health, yet you do nothing about any of it.

I think we have been had and I await you providing some information that shows you are as concerned about your health as you want us to be.  And that information needs to include actual diagnosis of illness and not you just posting more blathering about how sick you are.

Joe

edited to add: If you are poz, there are programs that would provide you with a doctor, health insurance or not and pay for the services to discover what really ails you.
« Last Edit: January 26, 2015, 04:46:17 pm by Joe K »

Offline tryingtostay

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Re: First Post
« Reply #159 on: January 31, 2015, 10:58:15 am »
Tryingtostay,

As empathetic as I want to be, I have grave doubts about your whole story.  Anyone, who is as sick as you claim, yet has done nothing to discover the source of these maladies, just doesn't sit right with me.  It's been almost a year since you started this thread and you still don't have a clue as to why you are so ill.  You spend so much time whining on here about your poor health, yet you do nothing about any of it.

I think we have been had and I await you providing some information that shows you are as concerned about your health as you want us to be.  And that information needs to include actual diagnosis of illness and not you just posting more blathering about how sick you are.

Joe

edited to add: If you are poz, there are programs that would provide you with a doctor, health insurance or not and pay for the services to discover what really ails you.


We started to address a few concerns I had a few months after my dx.  The doctor told me best to have one issue looked at at-a-time.  First thing we looked into was having an upper and lower GI track check.  My case worker had me enroll in C.H.A.P. and some other program to help with the bills.  Not one bill from Gastroenterology was covered.  Not. One. Bill. Was. Covered.  So after being discouraged by that and considering the bills from a cardiologist and a neurologist I decided rather than continue with my other health concerns I had and have a boat load of bills that were supposed to be somewhat covered I decided to wait till enrollment for 2015.  I have currently enrolled with Aetna for 2015.  The past month I've been looking around for an ID doctor and called a few places but they told me I have to have a recommendation by a primary doctor.  So I am going back to my previous primary doctor I use to go to before I lost my coverage. 

I am really excited to get things under-way.  In the meantime I've written down the things to discuss with my new doctor. 

« Last Edit: January 31, 2015, 11:02:50 am by tryingtostay »

Offline Tonny2

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Re: First Post
« Reply #160 on: January 31, 2015, 02:34:43 pm »


       ojo      Hi tryingtostay...I hope you and your doctor find whatever is making you sick and finally you start to feel better..you will be on my thoughts, comprende?....hugs      ojo

Offline tryingtostay

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Re: First Post
« Reply #161 on: January 31, 2015, 08:40:23 pm »

       ojo      Hi tryingtostay...I hope you and your doctor find whatever is making you sick and finally you start to feel better..you will be on my thoughts, comprende?....hugs      ojo

Hi Tonny2 :)  Thank you!  I will be updating this thread as we journey along and find out what's what :)

Offline tryingtostay

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Re: First Post
« Reply #162 on: February 02, 2015, 10:52:37 am »
Starting things off tomorrow.  Made an appointment with a new doctor.  I use to see him before I lost my insurance back in early 2014, he is in the Aetna network. 

Wish me luck

Offline tryingtostay

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Re: First Post
« Reply #163 on: March 13, 2015, 06:28:04 pm »
So after changing docs I seem to have landed someone who I think will help me with what's going on.  Before I left he said I can start meds today if I wanted or wait till I got back from vacation.  The symptoms, he said, we will look into them down the road.  He said the one med Tenofovir is put into a one a day pill with 2 others.  I asked him if they needed to do a resistance test first and he said usually they need a VL of a thousand to get a good idea.  He said he will have one scheduled anyways but it may take up to a month.  I'm more comfortable with that than just blindly jumping on meds.  I asked him about the memory issues and he said it's "possibly" due to the HIV infection and "possible" meds might clear things up.  Anyways just wanted to jump back in here and update a little. 

Offline tryingtostay

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Re: First Post
« Reply #164 on: March 13, 2015, 06:28:48 pm »
Oh, and what a reality check that was - no doubt about it.

Offline Jeff G

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Re: First Post
« Reply #165 on: March 14, 2015, 12:37:10 pm »
What are your current labs ? If they are still as good as they were before its surprising your doctor would suggest meds .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline tryingtostay

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Re: First Post
« Reply #166 on: March 14, 2015, 01:42:19 pm »
What are your current labs ? If they are still as good as they were before its surprising your doctor would suggest meds .

The latest is 151vl and 1895 cd4 @ 43%

When I was sitting there, he was asking me questions and after a few questions i broke conversation etiquette and told him that about my mental issues with concentration and memory and I think he picked up on that and maybe that's why he suggested the meds.  Cause I asked him if they would help them out and he said if the issues were possibly from the HIV then meds might help. 

I then asked about resistance testing and, like before, I was told that there needs to be a higher VL for a decent resistance test.  He said he could do it but it would take maybe a month for results.  I'm going to wait till we do a resistance test and I think he's doing that when I see him at the beginning of April.  I think he might also do another numbers check.  Those results above are from Dec 4th. 

Offline Tonny2

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Re: First Post
« Reply #167 on: March 14, 2015, 07:36:03 pm »


        ojo      hello trying2stay...those numbers are great numbers, so, all I can say, is, best of luck for you, I hope you can find a solution to all your problems...hugs    ojo

Offline tryingtostay

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Re: First Post
« Reply #168 on: March 16, 2015, 08:16:29 pm »

        ojo      hello trying2stay...those numbers are great numbers, so, all I can say, is, best of luck for you, I hope you can find a solution to all your problems...hugs    ojo

Thanks Tonny2 :)


I'm curious.  Are there two different versions of Tenofovir?  I've read there is a TDF version and a TAF version.  Am I reading two completely different things or no?  And from what I can recollect the TAF version is easier on the kidneys and bones?  Is the TAF version on the market yet?

Thanks all


EDIT:  Did a search on TAF and am doing some reading on it.  Thanks
« Last Edit: March 16, 2015, 08:31:11 pm by tryingtostay »

Offline tryingtostay

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Re: First Post
« Reply #169 on: March 27, 2015, 05:16:24 pm »
I think I am going to listen to my new doc and start meds.  I asked if the new version of Tenofovir is out, and he replied not yet.  When I get back we are going to discuss more about what meds I could possibly start taking.  Would it be ok to discuss meds in this thread?  I'd like to just keep everything in this one but if it isn't permitted for some reason I'll make a post in Treatment and Side Effects.  I am mostly concerned about side effects. 

Thanks all, have a great weekend! :)

 


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