Visit with Infectious Disease Doctor

I took a trip to NYC yesterday to visit my Infectious Disease doctor, Dr. Levine, who specializes in CFS  and is a recent addition to the CFSAC board.  I hadn't seen her in person in a couple of years.  We generally keep in touch by phone and e-mail; I send her lab reports and she renews my prescriptions.  I decided I was overdue for  a visit and was interested to hear her thoughts on the new retroviral research.

Here's a summary of what we discussed:

Immunovir
I told her about my 9-month long relapse last year that started in the fall, most likely from a viral trigger, and asked for her thoughts on what I might do to improve my immune system function so that I can avoid a similar fate this winter.  She wants me to stay on low-dose naltrexone, which has definitely helped. 

She also asked if I wanted to try Immunovir, which she learned of through Dr. Lucinda Bateman and has been using with some of her CFS patients.  Yes!  I told her I knew about Immunvoir and tried to get it early on in my CFS illness but couldn't find anyone to prescribe it.  Here's an article from the CFIDS Chronicle in 2001 that explains how Immunovir might help to treat the immune system dysfunction of CFS. 

This article also does a good job of explaining the Th2 dominance that is prevalent in many CFS immune systems, something I've been meaning to explain in a blog post for a while now.  As extra background, Th2 cells act against viruses and allergens, which is why our dysfunctional immune systems over-respond to those triggers, and Th1 cells act against bacterial infections, which is why we are more susceptible to those types of infections.  Here's another article describing a 2009 study of Immunovir in CFS.  This medication has been used safely for decades in Europe and Canada but is not readily available in the US, which is why I couldn't get it before.  So, I'm very excited about trying this medication.

Flu Shots
I have always avoided flu shots, feeling that any extra stimulus to my immune system should be avoided, but after my extended relapse last year, probably triggered by exposure to some sort of virus (maybe the flu), I've been having second thoughts.  I asked Dr. Levine for her opinion, and she said it was exactly the same as mine!  She used to avoid them for all of her CFS patients but has changed her mind after last year's bad flu season with the H1N1 flu.  So, she has begun giving some CFS patients flu shots...and so far only 1 patient had a bad reaction (a crash caused by the shot).  So, I think I'll go see my primary care doctor and get one this year.

Retroviruses
I asked for her take on all the recent retroviral research.  She's been attending the conferences and talking to the experts, so she's up-to-date on all the latest news.  She said she isn't testing patients yet because the test just isn't reliable yet.  She tried sending some patient blood samples to the lab in Nevada, VIP Dx, but the results were inconclusive.  In some cases, two samples from the same patient came back with different results, one negative and one positive.  So, there's no sense in spending the money for testing yet - and no point in treating without a reliable test.  She thinks a better test will be available very soon.

So, overall a very good visit.  I'm glad I made the trip.  Even better, I feel fine today!  No crash after a long day spent traveling back and forth to NY (about 90 minutes by train each way).  I walked much more than I have been lately, so I was pleasantly surprised to feel well today!  I'm even planning to go to my book group tonight.  I think that a new immune system supplement might be helping me, but I just started it last week while I was sick, so I'm waiting to see if it's really helping or if this is just a fluke.  I'll let you know!