User

Welcome, Guest. Please login or register.
April 24, 2024, 08:33:46 pm

Login with username, password and session length


Forums Index

Stats

Members
  • Total Members: 37651
  • Latest: Toropi_
Stats
  • Total Posts: 773288
  • Total Topics: 66348
  • Online Today: 795
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 1
Guests: 590
Total: 591

Search

Welcome


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

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

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

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

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

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

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

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

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

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.
« previous next »
Pages: [1]   Go Down

Author Topic: PML (progressive multifocal leukoencephalopathy)  (Read 2960 times)

0 Members and 1 Guest are viewing this topic.

Offline PDXRon31

  • Member
  • Posts: 45
    • PML Survivors & Supporters
PML (progressive multifocal leukoencephalopathy)
« on: November 24, 2006, 01:18:41 pm »
Greetings! My name is Ron and I am living with HIV and PML. Myself and a fellow progressive multifocal leukoencephalopathy survivor wanted to test the viability and usefulness of an online support group for others affected by PML personally or with someone they love. Therefore, I started a Yahoo Group to facilitate this idea back in June of 2006. Our membership has grown steadily since then. It seems little is still known of this affliction, so at best this online community could lead to new ways of seeking treatment for some and at least a forum for finding inspiration and venting frustrations for others. It has been personally frustrating and isolating for me not being able to efficiently find others with stories to share regarding their experience with PML. I thought it might be helpful to initiate an informal group to alleviate some of this frustration. I ask that you take a moment to join this group TODAY! Please be kind and share anything that you feel willing to share, be it about affective medical treatments, recovery successes, relationship struggles, rejection, finding employment, whatever! Your story just may prove invaluable to another. Thanks very much for your time!

http://health.groups.yahoo.com/group/PMLSurvivors/
Logged
Diagnosed with HIV in 2000
Diagnosed with PML in 2005
Diagnosed with Fabulosity at birth

Current treatments: Sustiva, Combivir, K-PAX supplements, and Myelin Sheath Support.
Last labs: September 2006
CD4 507 VL Undetectable

Offline Queen Tokelove

  • Member
  • Posts: 6,031
  • Smokey the Smurf
Re: PML (progressive multifocal leukoencephalopathy)
« Reply #1 on: November 24, 2006, 01:55:24 pm »
Hi and Welcome to the Forums. I've heard of this affliction but does not have it. There are some members here that does have it. I understand that you have set up a site for this problem but may I suggest you introduce yourself in the Off Topic Forum, I think that is where the Intro threads are. I suggest this so that the members can get to know you. I believe the members would like to get to know you first before they visit your site.

Otherwise welcome again. This is a great place to be and I'm sure someone will answer your query about PML.
You might even learn something that you may not have known, don't you love knowledge? I am like a great big sponge. Hope to hear more from you.
Logged
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline Eldon

  • Member
  • Posts: 2,664
Re: PML (progressive multifocal leukoencephalopathy)
« Reply #2 on: November 24, 2006, 07:59:21 pm »
Hey Ron,

I just want to wish you the BEST on your journey with this group.


Make the BEST of each Day!
Logged
Pages: [1]   Go Up
« previous next »
 

Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.