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

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

Thursday, July 12, 2012

What My Latest Labs Tell Me

On Tuesday, I received the results of a new round of blood work, which revealed both good and bad news. Or maybe, instead of "bad," I should say "neutral."  Here's a summary of the most significant findings.

Natural Killer Cell Activity

My Natural Killer Cell (NKC) activity improved from 8 to 14 (out of a normal range of 8-170 LU30).  So while I'm still at the very low end of the normal range, I've shown some improvement.  This is encouraging, but I still wonder if this increase of a mere 6 units could be explained by the vagaries of testing methods and lab conditions.  Only further testing in the future will tell for sure.  I'd like to think that the immune modulators (Equilibrant and ImmunoStim) are responsible for this increase.  


IgG antibodies of HHV-6 remain exactly unchanged since they were first tested in December, 2011. They are still 1:320.  This is after 4 months of Famciclovir at 500mg twice a day.  I understand that Famciclovir is supposed to be a long term treatment because it merely prevents the virus from replicating.  So, as the theory goes, one has to wait for existing viruses to die off of "natural causes" before seeing the benefits.  Nevertheless, I became impatient, and allowed Dr. W (my other ME specialist) to convince me to switch to Valtrex.  He's been touting Valtrex over Famciclovir, despite the research I found that said Famciclovir may be more effective against HHV-6.  

Vitamin D3

Vitamin D3 is apparently in the optimal range now according to Dr. W - right at 74 ng/mL.  This is after supplementing 10,000 IU's per day for seven months.  When my Vitamin D was first tested in December, it was at 40.  That's when I started taking the 10,000 IU's per day.  By February, it was up to 71.

I wondered back in February, if I continued taking 10,000 IU's per day, would my levels continue to rise until I reached toxicity (which starts at about 200 mg/mL).  A poster on Phoenix Rising was very adament that this would be the case.  Dr. W said that it would not - that instead the levels would flatten out once I reached around 75.  He said the body would self-regulate.

It turns out that Dr. W was probably right.  My serum levels rose 29 points in the first two month, and only 4 points in the next 4 months, even thought the dose remained consistent.  

Now that I've reached an optimum level, I might start cutting back the dosage by 1,000 IU's at a time and see if I can maintain my level in the 70s.    


My bilirubin counts continues to drop, probably because of the consistent use of Milk Thistle.  My last labs from April revealed the first time in my life that my bilirubin count was in the normal range...but just barely.  Now, it is at 0.8 mg/dL, which is the middle of the normal range.  As long as I can keep it in this range, I might consider myself to be free of Gilbert's Syndrome, which would theoretically make me one step closer to healthy. 


Mercury was measured in my blood at 5 mcg/L.  The reference range considers anything below 10 as normal.  For a fully health person, 5 mcg/L probably wouldn't be anything to worry about.  Dr. W seemed to think that a PWME needs to be as healthy as possible to have the best chance at remission, and that even a mercury level of 5 could be a problem.  I'm not sure if there's anything to it, or if this is just quackery.  When I get a chance I'll look deeper into it and decide whether I need to do anything about it.  

If I decide to do something about it, Dr. W said there's a heavy metal detoxification supplement that he recommends.  At this point, I'm reluctant to start yet another supplement.  Where does it end?  

Everything else checked out pretty much as expected and isn't worth commenting on.  

Thanks for reading.    


  1. Great stuff on the Bilirubin. I have Gilbert's also. My range is usually 1.2-1.9.

    Great to hear the Milk Thistle seems to be working. I'd read on the web that Milk Thistle is not good for Gilbert's, but never read about anyone with Gilbert's who actually tried it. Now that I have, I'm putting it on my "To Try" list.

    1. Interesting. Everything I've read about milt thistle seems to say that it IS good for Gilbert's, and well as general liver health. I figure I can't go wrong with it because it's probably important to protect the liver anyway give all of the supplements most of us take.

    2. ...but let me know if you hear otherwise!

  2. Hi Patrick,

    Here's a link with the common critcism I read about Milk Thistle and Gilbert's ( Namely that Milk Thistle speeds up Phase 1 detox, but people with Gilbert's have a normal Phase 1 and slow Phase 2. So in theory Milk Thistle just overloads Phase 2 even more than it already is in Gilbert's sufferers.

    Problem is there's not much research on Gilbert's. So whether this "Phase 1, Phase 2" concern is real or not, who knows?

    On a side note, here's an article about a pro tennis player with Gilbert's. Looks like it holds him back from reaching his full potential.

    1. Thanks Greyson. I'll definitely look more into it.

      And I now have a new favorite underdog tennis pro to root for.

  3. I might have mentioned before that I started tinkering with my diet. After going Paleo (meats, fruits, veg and nuts only) for 30 days and then going Primal (added in dairy and a little bit of whole grain), I had an odd side effect that I wasn't expecting. I no longer get sunburns. Yup the diet I was using to help improve my health changed my skin chemistry. Then over the winter I had a bad downturn and ended up mostly bedbound again for three months, from winter solstice to the vernal equinox. On the day of the equinox it was sunny and in the 70s for the first time in months so I sat out in the sun for a long time. I got my first sun induced dose of vitamin D since the fall (I had been supplementing all winter but my blood levels dropped anyway). The next day I felt better. Thinking this was a fluke I started looking for corolations between crashes and my sun exposure. Turns out that I can only go for 3-4 days without sun before I start crashing again so sun exposure is really REALLY important.

    After some reading, I think I found the component in the diet that changed my skin chemistry pastured organic meats. A big part of eating Paleo is buying meat from animals that have been raised humanely eating the stuff they were designed to eat such as grass for cows and bugs for chickens. My husband proved the meat theory out this past weekend. He still eats grains, sugar, cereals etc which I stopped eating but he is eating the same pastured meats for dinner as I am so the meat is definitely the key here.

    If you feel like doing an experiment, try switching to fully pastured/organic/humanely raised meats, pastured eggs, butter from grass fed cows and cooking with pastured animal fats and see what happens. For more info on sun exposure, see Stephanie Seneff's blog: She is a prof at MIT with a double degree in bio and computers. She is mostly talking about heart disease but she has some interesting thought regarding using the sun as a vitamin D source.

    As far as the mercury goes look into chelation therapy. Thing is you can herx pretty bad on that stuff and many CFSers wait until they get somewhat better before doing something like that. Personally I'm waiting until 4-5 years into this illness and if my improvement plateaus then I'll look into filling removal and chelation.

    1. Baffled, I think I agree with you that sun exposure is pretty important. I've had several weekends recently where I've had a lot of sun exposure and I do tend to feel great that evening. And my sleep feels deeper and more restful too. And all that's after my blood serum levels of D3 were optimal, so I think there may be more to it than just supplementing D3. I don't think supplementation is a substitute for the benefits of sun exposure.

      As far as the diet, we do try to focus on grass-fed beef and the other things you mentioned, it's just hard to stay consistent. Your post was good motivation for that. Thanks.

  4. Just found this over on Mark's Daily Apple; everything you ever wanted to know about vitamin D. Apparently sun exposure also boosts glutathione levels which makes total sense why I feel better when I sit out in the sun regularly.

  5. Nice to hear about your Vitamin D experience. I've ben trying to get various doctors to test my levels for years but no-one would do it for some reason! Finally got a home test kit recently and now I'm just waiting to hear the results. I'm almost certain I'll be low or deficient because we get very little sun here in Ireland! But I am still a little unsure of how much Vitamin D to take because of all the varying opinions - its just impossible to know who's right.

    1. Hi Miriam,

      Can I ask you the name of the home Vitamin D test you're using?

      I've had Vitamin D tests done by a MD before, but the price was absurd - $250. And insurance didn't cover a dime (insurance is probably something you don't have to deal with over there). Sounds like you have a whole different problem over there in Ireland, it's difficult to get a dr to agree to a test!


  6. Hi Patrick, I'm wondering how you got a doctor to test for these things? Was it an MD? Were they blood tests? I've seen 20 doctors and nobody has ever suggested ordering these tests. My GP actually said hormone tests don't exist in allopathic medicine and she wouldn't know what to do with the results once she got them. I have asked multiple times for heavy metal toxicity tests and they just blow me off...

    Thanks for the info!

    1. Hi Elizabeth. I had to search the web for ME/CFS experts in my area. I am fortunate to live in the greater Los Angeles area where there is a large population of doctors to choose form, but even then he wasn't easy to find. Most of these ME/CFS expert doctors do not take insurance though, but if you have PPO, you can get reimbursed for about 2/3 of your bill. Yes, he is an MD. It's not a great solution, but I've found that these ME/CFS specialist doctors are the only ones who will order all these tests.

      I know your frustration with getting blown off by doctors. Screw 'em. I hope you find one that will order the tests.