Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, March 6, 2012

New Round of Labs: Low Natural Killer Cell Activity

Low Natural Killer Cell Activity

I had my third appointment with Dr. W (ME specialist) today, and confirmed what we both already suspected: my natural killer cell (NKC) activity is low.  What surprised me was exactly how low.  Out of a reference range of 8-171, mine tested 8.

We all know that the medical community hasn't agreed on a set of biomarkers for ME/CFS, but most would probably agree that low NKC activity is one of, if not the, most common marker.  Most of us have it.

So I have mixed feelings about my particular result.  It was somewhat vindicating to confirm what I already knew--that I truly have ME/CFS.  But it's also scary to see such a clear deficiency in an critical bodily function.  Not only do NKCs keep viruses at bay, they help defeat cancerous cells--often killing cancerous growths without us ever knowing about it.  Now, apparently, I'm more susceptible to cancer.

But you can't live life in fear.  For as long as this NKC problem persists, I will simply make sure that I get regular cancer screenings.  That's all I can really do.

Starting an Anti-Viral Drug

At my last appointment, Dr. W and I discussed the possibility of using an anti-viral medication to control the reactivated Epstein-Barr and HHV-6 infections.  He mentioned that he normally prescribes either Valtrex or Acyclovir.  I spent the intervening months researching these two options.  As part of that research, I came to the conclusion that a third option, Famvir, was probably superior to these others.  While all three are effective against EBV, Famvir is supposed to have a broader spectrum and be more effective against HHV-6 and other herpes-family viruses.  Since my insurance covers all three medications, I came into today's appointment intent on coming away with a Famvir prescription.  

Dr. W was reluctant to prescribe Famvir, to say the least.  So this was the first time I gave him major push-back on one of his recommendations.  He ultimately agreed, but admitted that he had no idea what dose he should prescribe.  After the appointment, Dr. W researched dosage information and wrote the prescription for 500 mg/2x day. 

I also mentioned that many PWMEs report having success with a combination of an anti-viral and an immune modulator.  This seemed to perk up Dr. W, as if he'd been waiting to suggest it himself.  He wrote a prescription for low doses of something called "Naltrexone."  I've never heard of this drug, so I'll certainly spend a couple of weeks researching it before filling the prescription.

Candida Dies Hard

The biggest surprise was that my Candida titers had hardly dropped at all.  They are still alarmingly high.  This was after 2 weeks of Diflucan (I couldn't finish the full 4 weeks due to kidney pain), months of coconut oil,  months of Pau d'Arco tea, and an absolutely unwavering commitment to a strict Candida diet.  What do I have to do to kill these buggers?  

Since I apparently don't tolerate Diflucan very well, Dr. W prescribed the next best thing: Nystatin.  Nystatin is actually much less toxic than Diflucan and can be taken for longer periods of time, so I am hopeful it will be effective this time.  

The Good News

The good news was that some of my vitamin and hormone deficiencies have been corrected...at least partially.  My vitamin D3 levels are now optimal, and my thyroid levels are closer to optimal.  I rarely get cold hands and feet any longer, so I know that the thyroid supplementation must be working.

6 comments:

  1. If my memory serves me correctly, Naltrexone is normally used by Cocaine users as a severance tool. I tried it once and told the Social Security doctor I was taking it. He asked me five times if I was a cocaine addict.

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    1. Beatrice, my doctor mentioned that as well. Although I think it's given in much high doses when prescribed to cocaine users. It apparently blocks the receptors that cocaine binds to, but I don't exactly understand why it is useful to ME/CFS.

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    2. Hi Patrick. I have gone down the same road - EBV, hhv-6 and CMV clinical diagnosis and was going to go with Valcyte but went with Famvir instead. After a conservative dosage attempt did little to nothing, I increased it to 500 mg 2x every per day for about 3 months but got sore kidneys and decided to get off of it. However, I found artesunate since then. Been on a custom dose for 3 months now and it is working better then anything in the past 15 years since I got sick. Just got back from a jog after 5 hours sleep and having returned from Asia just yesterday! Happy to answer any questions.

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  2. Thanks John. I've never heard of Artesunate, but I'll look into it. I appreciate your input!

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  3. Hi Patrick...I hope you are doing well. As an update on my treatment...I was overly optimistic in my assesment (I am a chronic optimist otherwise I would have given up years ago ; ). I still cannot tolerate high heart rate for any extended period of time so I am back to fast walking 45 mintues a day with no problem. Life is normal now with the exception of vigorous exercise kick back - severe post exertion fatigue. After being off the Famvir for a few weeks, I decided to try Artesunate (Hepasunate from hepalin.com) along with Famvir at a lower dose of 250mg/2X/Day. Some research indicates it complements the Famvir. No news yet as I will do another exercise test (jogging etc. in another month). My litmus test is exercise - I will consider myself cured when I have normal recovery from exertion as that is the last remaining symptom of the disease. I would like to get an update on your progress with Famvir and any other treatments you are considering. P.S. Something did happen while on Famvir, in that my immune system seemed to kick in as I had lymph node pain and fever/aches for 2 days. Following that, one of the strange symptoms I had disappeared - white secretions from the corners of my eyes - stopped completely. This was a regular occurrence before that.

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  4. That's really awesome blog because i found there lot of valuable Information and i am very glad that you share this blog with us.Famvir 500mg

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