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PML Survivor
Jun 25, 2006

UPDATE TO: PML Survivor Dec 27, 2005

Here was my original dialogue:

PML Survivor Dec 18, 2005

I was diagnosed with PML in September of 2005. Since that early diagnosis I lost my ability to walk, use my left hand, see without double vision, swallow safely, feel the left side of my face and now it is December and I have regained most of these abilitities. My question is in regards to complete recovery. Are there stories of 100% recoveries? I invite anyone sufferring from PML to email me at Adventureman25@hotmail.com. Thanks!

Response from Dr. Wohl

Did your recovery follow the start of HIV medication or other therapy?

DW

I contracted HIV in early 2000 and went on Combivir & Sustiva for about 14 months then stopped all meds but went back on them (same ones) in September 2005 and it has already brought down my v/l from 750,000+ to undetectable. -Thanks Ron in Portland, OR

LATEST: I just wanted to share my latest update in hopes that it may provide some light for those of you out there going through the same thing. I have not been able to find any support groups for people recovering from PML online or otherwise so I am posting this here again. Because this illness affects one's ability to work, live, and be in a relationship it can be devastating. It has now been 8 months since my diagnosis. I am still taking Combivir and Sustiva. Last October my CD4 was 135 and my VL was over 750,000. It has been undetectable now for the last 7 months. My CD4 varies. My highest has been 600 and my lowest has been 528. I still do not drive or type with both hands but my 4 months of physical rehab helped tremendously. Improvement is slower going now, but I expect a full recovery. If you currently have PML, be patient with yourself. It may feel hopeless now, but you will improve. Best -Ron

Response from Dr. Young

Ron- Thanks for your follow up. I'm glad to hear that your continuing to make progress.

Best of health to you, BY



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