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Author Topic: Hope and taking the next step  (Read 2086 times)

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Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Hope and taking the next step
« on: April 28, 2012, 01:19:06 AM »
I attended the HIV Update Conference in Albuquerque Friday.

It is an annual affair and sometimes provides some good information. This year, it left me with hope for a possible cure.

Not the cure where the virus is wiped out of our bodies and we skip gaily down the lane.

The cure they spoke of was a working maintenance type cure. The idea is to use genetic engineering to alter CD4 cells and make it impossible for the virus to latch onto the cells. This is more or less what happened to the Berlin patient.

What would happen is the virus wouldn't be wiped out, but it would be kept in check thanks to mutated CD4s. This would work without ARVs, which means those with HIV could pretty much live normal lives without the need for meds.

Another avenue they discussed was the use of zinc fingers (that is what they called them) to enhance heavily impacted immune systems. I spoke to one man who was taking part in the clinical trials, who said his CD4s nearly doubled after having been stuck in the low to mid 200s for years.

While my CD4s have always been OK, I know others who seem to have reached a plateau and who can't seem to improve them. This might be an avenue for them.

OK, I don't expect either of these to become a reality in my lifetime, but it does offer hope for the future, which gives me a sense of hope as well, even if I may not benefit from it.

I also want to add an update on my hump and neck issues.

I initiated a dialogue with my doctor about doing something about them.

At the conference, which my doctor also attended, he approached me to let me know he had been networking with other docs about it and he may have located a doctor in Albuquerque that has done this type of thing for other people.

My doctor is also exploring the idea with local surgeons, although I don't know if any of them have any experience with humpectomies. ;)

The next hurdle will most likely be trying to get my insurance to pay for it, or at least most of it.

But, it's a start.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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Re: Hope and taking the next step
« Reply #1 on: April 28, 2012, 03:23:24 AM »
I spoke to one man who was taking part in the clinical trials, who said his CD4s nearly doubled after having been stuck in the low to mid 200s for years.

I also want to add an update on my hump and neck issues.
there's been a thread in the research forum for like forever about zinc fingers (http://forums.poz.com/index.php?topic=21770.0) interesting stuff and fairly promising.... well promising sometime way off in the future. LOL

I'm one of those people who has reached a plateau (310 seems to be it) and would love to see that go up someday. ah, one can always hope. LOL

good luck with whatever the doctors decide they can do to help you!!! :-*
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: Hope and taking the next step
« Reply #2 on: April 28, 2012, 05:41:52 AM »
Mark, that's good news your doctor is taking you seriously.  My fingers will be kept crossed for some fantastic news for you!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Hope and taking the next step
« Reply #3 on: April 28, 2012, 07:55:39 AM »
WHAT you were in ABQ and didn't even come by to pay ole denb a visit  ???

well I never  :-*   and yes, it always nice to get a doctor to listen to you, I love my Dr. Michelle Iandirio, Oh and   Dr. Bruce Williams @ the Truman street clinic is pretty good too  ;) I'd be DEAD if it wasn't for that place  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: Hope and taking the next step
« Reply #4 on: April 28, 2012, 08:25:59 AM »
Hello Mark,

I am so pleased that your Doc is doing work about you, good luck about it all. HUGS to you.
Love
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Hope and taking the next step
« Reply #5 on: April 28, 2012, 03:10:38 PM »
WHAT you were in ABQ and didn't even come by to pay ole denb a visit  ???

well I never  :-*   and yes, it always nice to get a doctor to listen to you, I love my Dr. Michelle Iandirio, Oh and   Dr. Bruce Williams @ the Truman street clinic is pretty good too  ;) I'd be DEAD if it wasn't for that place  ;D

Yes, I was there with my coworker, Joe, and we basically spend the better part of two days either in a conference or listening to the state tell us what new paperwork they want us to do.

Bruce Williams was at the conference, and Michelle Iandiorio was one of the presenters. I have known them both for quite a while.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline deibster

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Re: Hope and taking the next step
« Reply #6 on: May 01, 2012, 12:11:41 PM »
I hope it leads to some progress mark. Hugs Deiby  ;)
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline pozniceguy

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  • Niceguy Dallas
Re: Hope and taking the next step
« Reply #7 on: May 01, 2012, 05:55:57 PM »
Mark  that is a bright  spot on both  fronts  long term and for your   immediate  problem ...  lots of  positive  energy   coming to you to  deal  with Ins  Co.

just remember  when dealing with  Bureaucrats  only way to get what you want is  persistence  and  lots of  paper.....maybe  even  Newspaper..... shouldnt be news  to an old  reporter

Nick

remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline suziel65

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  • Posts: 3
Re: Hope and taking the next step
« Reply #8 on: May 05, 2012, 06:46:39 PM »
Hi Mark,
I understand how that hump  can bother you.  Have you ever had liposuction.  Have you also tried to alter your diet to a vegitarian diet.  Not totally vegan but eat lots of fruits and veges most of the time.  Then allow yourself to eat meat when your body is craving it.  This may also help.  I know that our bodies take the fat and store it in the oddest place with these meds that we are taking.   Good luck.  I am sure that even if your insurance does reject your request that you can always fight them on it.   
Suzanne
Love, Hope and Happiness

Offline BT65

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Re: Hope and taking the next step
« Reply #9 on: May 06, 2012, 04:18:52 AM »
Hi Mark,
I understand how that hump  can bother you.  Have you ever had liposuction.  Have you also tried to alter your diet to a vegitarian diet.  Not totally vegan but eat lots of fruits and veges most of the time.  Then allow yourself to eat meat when your body is craving it.  This may also help.  I know that our bodies take the fat and store it in the oddest place with these meds that we are taking.   Good luck.  I am sure that even if your insurance does reject your request that you can always fight them on it.   
Suzanne

If you follow Mark's posting history, you will see he is on a Mediterranean diet, so he eats healthy already.  This issue is from the meds, not diet.  I understand you're a nurse, but trust, Mark knows what he's doing.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: Hope and taking the next step
« Reply #10 on: May 06, 2012, 05:20:00 PM »
Hi Mark,
I understand how that hump  can bother you.  Have you ever had liposuction.  Have you also tried to alter your diet to a vegetarian diet.  Not totally vegan but eat lots of fruits and veges most of the time.  Then allow yourself to eat meat when your body is craving it.  This may also help.  I know that our bodies take the fat and store it in the oddest place with these meds that we are taking.   Good luck.  I am sure that even if your insurance does reject your request that you can always fight them on it.   
Suzann

Hi Suzanne,
Glad to see you are here.
No, I haven't tried liposuction yet, but may be looking at doing it now. Either that or surgery just to cut it out.
My hump in my back may work with lipo, but the lumps on the back of my head and the front of my neck may not. I will have to see what the doctor's say.
This will all require the approval of my insurance.
I have been eating a Mediterranean died for quite a while, with regular forays into vegetarian meals two or three times a week. I also eat loads of fish.
However, I am also gluten intolerant (been that way for more than a decade, before it became chic.)
So, vegan diets really won't work simply because of their composition.
But I appreciate the information and advice.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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