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HIV Life >> Living With HIV

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thriller
Newbie

Reged: 03/19/09
Posts: 4
long time without hiv medication but ignored in sw
      #245014 - 03/19/09 04:57 AM

I have been pos for some 20 odd years and am still without meds, I feel ignored by the hospitals in sweden where I live. My levels of cd4 and virus have been steadey for a long time and since -99 -00 they went down after an operation for overweight Gastric banding. Life got off track for awhile and when I got in order again my counts rised to 600 cd4 and virus under detectable: Have been struggeling here to get help with my teeth but get no to financial help from hospitals ive had candida in the mouth twice in my life and I link nit to the plastic prothesis l had to have first -88 when my cd4 was 1000 and after it was fixed with porcelain it was gone I have now gone 5years with this new plastic and taken every treatment recomended with only temporary results.My Gastric banding operation broke and I had a new in oct-08 this time bypass. and my cd4 isnow at 200 and viralload 23000 I am not giving up on myself in this and i know i will get my teeth implant and also lm trying hard to organice my life in a similar way as last time imy body responded positive to my situation. I m not an "alternative freak" so dont get me wrong here. and im not saying to others what to do in their life with hiv. But am l alone in this situation?? I am reluctant to hear the same thing over and over again but still l want to put this out here.

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: long time without hiv medication but ignored in sw new
      #245016 - 03/19/09 08:35 AM

You certainly are't alone in your situation. From what you say it sounds like you are a member of a small group of people with HIV known as elite controllers. However as is the case with some elite controllers eventually their counts may start to progress. If your CD4 is presently 200 and your viral load is 23000 then you need to see a doctor about getting on medication. In the US it's recommended when the CD4 falls below 350. But since your counts have recovered once before after an operation perhaps they will this time also.

Below are some links with additional information about elite controllers.

http://www.hivcontrollers.org/

http://ari.ucsf.edu/programs/elite.aspx?print=yes

http://www.zephyrfoundation.org/news/hiv/aids/elite-controller-may-hold-secret-to-aids.html


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thriller
Newbie

Reged: 03/19/09
Posts: 4
Re: long time without hiv medication but ignored in sw new
      #245071 - 03/22/09 05:20 AM

thanks for the reply

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TonyF
Regular

Reged: 02/13/09
Posts: 40
Re: long time without hiv medication but ignored i new
      #245085 - 03/23/09 02:57 PM

What kind of attention are you seeking from hospitals? I don't know how the laws work in Sweden, but you are either eligible for financial aid for medical services, or you are not.

I don't see why you having hiv should allow you to get free dental services.

I, myself, don't believe in the concept of 'elite controllers'. i think we all can live perpetually healthy.

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: long time without hiv medication but ignored i new
      #245109 - 03/24/09 09:21 PM

"I don't see why you having HIV should allow you to get free dental services."

The reason that dental is deemed so important is that it can have a direct effect on a person with a compromised immune system. Untended dental hygiene can lead to infections that can be released directly into the blood stream as a systemic infection. This can be deadly in a person with an uncompromised immune system, lesser infections can have the same impact on those with HIV.

http://www.ahrq.gov/news/press/pr2001/dentalhivpr.htm

Dental Services are deemed so important in HIV care that Ryan White Funding Part F funds money toward dental services for HIV + patients.

It also seemed to me that I saw a post where you said high CD4 and low viral load as opposed to low CD4 and high viral load had no impact on life expectancy. If that was the case, then we would not have seen the dramatic decrease in deaths from AIDS related causes (OI's) when protease inhibitors were introduce in 1996.

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr58e324a1.htm?s_cid=rr58e324a1_e

As has been well established. It's the opportunistic infections that can be deadly. It's not new information that lower CD4 counts and high viral loads lead directly to a list of these infections.


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thriller
Newbie

Reged: 03/19/09
Posts: 4
Re: long time without hiv medication but ignored i new
      #245168 - 03/29/09 04:41 AM

You got me wrong .. Im not looking for finance Im looking for some other thoughts on life with hiv that is not all about meds.!!!

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thriller
Newbie

Reged: 03/19/09
Posts: 4
Re: long time without hiv medication but ignored i new
      #245169 - 03/29/09 04:49 AM

Quote:

"I don't see why you having HIV should allow you to get free dental services."

The reason that dental is deemed so important is that it can have a direct effect on a person with a compromised immune system. Untended dental hygiene can lead to infections that can be released directly into the blood stream as a systemic infection. This can be deadly in a person with an uncompromised immune system, lesser infections can have the same impact on those with HIV.

http://www.ahrq.gov/news/press/pr2001/dentalhivpr.htm

Dental Services are deemed so important in HIV care that Ryan White Funding Part F funds money toward dental services for HIV + patients.

It also seemed to me that I saw a post where you said high CD4 and low viral load as opposed to low CD4 and high viral load had no impact on life expectancy. If that was the case, then we would not have seen the dramatic decrease in deaths from AIDS related causes (OI's) when protease inhibitors were introduce in 1996.

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr58e324a1.htm?s_cid=rr58e324a1_e

As has been well established. It's the opportunistic infections that can be deadly. It's not new information that lower CD4 counts and high viral loads lead directly to a list of these infections.



I dont know how u read but I didnt write what u thought u read. And all the same Nothing new under the sun as it seems..

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: long time without hiv medication but ignored i new
      #245170 - 03/29/09 06:48 AM

Since there seems to be an issue with how a person reads a thread, let me put this in a conversational way. I wasn't talking to you, Thriller. I was commenting on TonyF's comment. What I said had nothing to do with you, other than the fact that TonyF doesn't see why you should get free dental.

Sorry to have confused you. I'll just leave you two at it.

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