Wednesday, September 29, 2010

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:

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.

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!


  1. Thanks for the great summary, Sue. I'm never sure what to do about medications like Immunovir that stimulate the immune system (at least I think that's what it does) because one of the possible subsets of CFS patients are those whose immune systems are up-regulated -- Dr. Komaroff uses the phrase Chronic Immune System Activation. If that's what's going on with me, my guess is this wouldn't be the right medication. On the other hand, if I've got some reactivated latent virus, maybe Immunovir would make sense.

    I didn't think it was available in the U.S. though.

    All in all and, not the first time, I'm at a loss! Such is the mystery of CFS but...hopefully not for long with all the new studies being done.

    Thanks for the informative update.

  2. Love the post. It has so much good information in it I linked to it in my last blog entry.

    I too have been wondering if I should risk the flu shots. I still haven't recovered from the crash that resulted from two TB tests I had back in July. I'm very leary of getting them since I usualy feel very crappy after getting them and that was when I was healthy.

    I'm probably going to forward the information on Immunovir to my doctor. He's also considering the LDN but waiting to hear from my infectious disease doc first.

    Glad to hear you are feeling better and are up and about again. Yeah!

  3. Good information from your doctor. Thanks for sharing. I am in remission from CFS which is exacerbated by an over indulgence in milk and milk products.

    1. Sandra Van Valkenburg4:32 AM

      I have been struggling with CDS for three years now and will lose my teaching job in September if I don't have it under control. Could you please tell me how you got yourself into remission? I hope you are still checking this forum. You could email me at - it feels like my life and sanity are on the line right now. I know the cause is not depression as the medical community always wants to say.

  4. Toni -

    I guess I didn't explain the immune system dysfunction very well - I was in a rush to get to my book group last night!

    You are right - people with CFS have immune systems that are partly up-regulated and partly down-regulated. That's what I tried to explain about the Th2 dominance that is common in CFS - our immune systems are upregulated against viruses and allergens but are under-active against bacterial infections.

    That's why most medications won't work for CFS - for example, steroids "turn off" the immune response, which works for people with auto-immune diseases but not for those of us with CFS because part of our immune systems are already under-active.

    Similarly, as you say, we should avoid immune system stimulants because part of our immune system is already over-stimulated.

    Immunovir is unique because it neither stimulates or turns off the immune system; instead, it balances the immune system. It acts directly on that Th2-Th1 imbalance, helping to "turn up" the parts of our immune systems that are under-active and "turn down" those parts that are over-active.

    You can't buy Immunovir in the US, but you can order it (with a doctor's prescription) from one of the manufacturers in Ireland or Canada.

    I hope that helps - the immune system dysfunction of CFS is a very complicated topic. Please let me know if it still isn't clear, and I'll try to find another article that explains it more clearly.


  5. Thanks for sharing your experiences with Dr. Levine. I've been debating getting that test (for XMRV or MLV) and now (after reading this post) I may wait a little longer. I'm glad you have some excellent help in dealing with this illness.

  6. Just adding my thanks for a very useful post. Hope your good patch continues :-)

  7. Sue You left this message on Sick and tired blog
    You're doing everything right. Make sure to rest as much as you need and try to avoid over-doing. Drink LOTS of fluids and ingest LOTS of salt - it really helps.

    We have just come back from a herbalist & she is recommending Himalayan crystal salt. It has 84 minerals in the salt.

    Love Leanne

  8. Anonymous1:57 PM

    Thanks for the great info as ever.

    A train trip to another city and being able to walk around sounds great! Not crashing from it is even better!


  9. Thanks for the great info, Sue!