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, May 10, 2012

Blood tests show gradual improvement

On Tuesday, I had yet another doctor's appointment.  This appointment was with my "old" ME/CFS specialist, Dr. W, who I still intend to see every once in a while.  (He provides certain treatments like Immuno Stim and T3 that my new doctor, Dr. C, does not.  And as I've read many times and firmly believe, the key to remission is "getting all the pieces of the puzzle into place at once.")  Based on my latest lab results, I may be headed in the right direction.


I realize, of course, that Candida is more a symptom of a weakened immune system than a cause of ME/CFS itself.  But, since December, I've had the pleasure of watching my Candida antibody levels gradually drop.  Not as fast as I'd like, but the trend is encouraging.  Here's the progression of all 3 antibody types, from December to April (where "positive" is anything over 1.0):

              Dec.     Feb.    Apr.  
IgG         1.3       1.2      1.2
IgA         3.7       3.3      2.6  
IgM        1.4       1.3       1.2

The drop from December to February was, I believe, mostly from a change to a low carbohydrate  diet.  The drop from February to April was aided by two months of Nystatin, which I will be continuing for at least another two months.  The real test will come when I quit the Nystatin.  But I think that as long as I stick with the low carb diet and probiotics, these numbers should continue to fall.

Epstein Bar Virus

Unfortunately, I've only ever had Epstein Bar Virus (EBV) tested twice, and using two different assays, so the results are not directly comparable.  But the recent results are encouraging.  In July, 2011, my IgG antibody levels were 2.71 (where >1.10 is positive) on a VCA test, and >5.00 (where  >1.10 is positive) on an EBNA test.

In April, I had EBV tested again, using an IFA test.  The IgG antibody level was 1:160 (where  >1:10 is positive).  That number is way below what most people consider to be the threshold for a reactivated infection.  I've read anywhere from 1:640 to 1:1280 as the threshold.  

So based on this evidence, I'm less convinced that EBV is a significant factor in my ME/CFS.  


High bilirubin isn't typically considered a component of ME/CFS, but it is the hallmark of a genetic condition called Gilbert's syndrome, which many sufferers claim has the same symptoms as ME/CFS.  I have Gilbert's syndrome.  

Bilirubin levels above 1.2 mg/dL are considered high. Throughout my entire life, whenever my blood was tested, my bilirubin levels were in the 1.5 to 1.6 range.  In a March blood test, it was only 1.2, and in April, only 1.1.  I'm normal!  I believe this is due to the milk thistle supplement I now take 3 times a day for liver health.   

Vitamin D3

My vitamin D3 levels also improved from 40 ng/mL in December (very low), to an ideal 73 in February.  This coincided with the major reduction in shortness of breath.  It is also supposed to improve immune function.

Other Pathogens

With other pathogens, I haven't been as lucky.  HHV-6 was tested for the first time in December and was 1:320 (IgG), which is considered right at the threshold of a reactivated infection.  In April, it was exactly the same (1:320), and this was after two months of the antiviral Famciclovir, 500mg 2x/day.  I will continue to take the Famciclovir for another two months at least, if not much longer.

In April, I was tested for Coxsackie B for the first time, and tested positive for Coxsackie B4.  I haven't even begun to explore treatment options for this with Dr. C yet.  

My Mycoplasma Pnuemoniae numbers also remain very high, although that's not surprising because I haven't done anything to treat it yet.   In April, the IgG levels were 1:512 (where greater than 1:64 is positive).  Dr. W wants to treat it with two fulls months of the broad spectrum antibiotic: Cipro.  This is heavy-duty antibiotic and many people report strong side effects, so I am leery of this suggestion.  I've filled the Rx, but haven't begun taking the pills yet.  I plan to do a little more research before diving into two months of Cipro. 

Finally, Dr. C tested the four subclasses of IgG antibodies generally (i.e. not looking at antibodies for specific pathogens).  Three of the four subclasses were normal, but subclass 3 was a paltry 12, where normal is 22-178 mg/dL.  Dr. C says this "may be my Achilles heal."  We'll see if the Equillibrant can change that.

So I've had some good new and some bad news lately, but the overall trend is positive.  I'll report on the Equillibrant later this week....

Take care,



  1. I too have Gilbert's. My bilirubin levels have been as low as 1.2, and as high as 1.9.

    I've often wondered how much/if my Gilbert's is related to my CFS.

    I'd love to find a home test for bilirubin levels and play around with my diet/lifestyle to lower my bilirubin levels. I'm sure I could bring it down considerably if I had a way to measure it to see what works and what doesn't.

    1. Greyson, that Milk Thistle stuff really works for bilirubin. My latest blood tests in June showed I'm down to 0.8, which is mid-normal range. I've never been that low!

      But the bad news is I don't feel much better, so I'm doubting more and more that the Gilbert's was a significant factor in my ME/CFS like I once thought it might be.

      Let me know if you find a home test for bilirubin.

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  3. I was also diagnosed with Gilberts Syndrome at the start of my ME / CFS on the basis of elevated bilirubin and normal LFTs. Ten years later, I can tell you that I don't have Gilberts, which is genetic, as a) neither of my parents have it, and b) my bilirubin is now in the normal range after treatment with methyl folate and B12. Elevated bilirubin can be due to many things - hypothyroidism, B12 deficiency, methylation problems, haemolytic anemia, etc etc - and it is simply lazy medicine that diagnoses this as Gilbert's Syndrome and then promptly dismisses it as a benign condition. Doctors need to be made aware of this! I realise I'm very late to this thread, but I wasted a lot of time trying to deal with Gilbert's Syndrome when I should have been addressing a b12 deficiency.

    1. Thanks for providing your persepctive on high bilirubin...that is instructive for many I'm sure. For me, there's no doubt I've always had elevated bilirubin, since well before I contracted ME/CFS, and it is a genetic condition with me (my mother also has it.) I think I agree with you though that it is a not a major component of my disease state, and I have never wasted much time on it. I thought it could be significant very early on (the Gilbert's Syndrome tag on my blog is a holdover from that time), but quickly dismissed that notion.