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, January 5, 2012

New Blood Tests Clarify My Diagnosis/Treatment Plan

About 2 weeks ago, I received a copy of my most recent blood work.  This was the blood panel that was ordered by my ME specialist and which finally tested for all of the ME "usual suspects," including hormonal and vitamin deficiencies.  Now I've had a chance to review those results with my doctor and create a revised treatment plan.

The good news was, I tested negative for some of the "usual suspects," like the CMV virus.  My adrenals are perfect, my insulin levels are nice and low, and hemoglobin was excellent.  So there's a few less things to worry about.

Now, here's what's ailing me (below), and what we're doing about it.  I've placed them in rough order of severity.  Keep in mind, the root cause of these systemic dysfunctions is the "blown fuse" in the hypothalamus, according to my doctor.  Since there's no way to directly reset the fuse, the best known treatments are to fix the resultant imbalances.

Viral and Mycoplasma Infections  I tested positive for IgG antibodies for both HHV-6 and Mycoplasma infections.  The Mycoplasma numbers were particularly high (3.08, when normal is below 1.10).   Previous tests also showed positive IgG for Epstein Barr Virus.  IgG antibodies are typically deemed only to be evidence of past infection.  However, the conventional thinking among ME experts is that, when the immune system is weakened as it is in ME patients, these viruses reactivate.  There is no way to test for reactivation, although Dr. Tietelbaum's book cites to several clinical studies that he says prove this point.

Dr. W offered to prescribe Valtrex, which he said can be effective against all of these infections, but I delayed that decision for now for a couple of reasons.  For one, Dr. Teitelbaum's book says that HHV-6 is resistant to Valtrex, and that Valtrex is not effective in treating ME.  My doctor obviously disagrees with this.  I'm keeping it in mind as a possibility for later.

Candida Albicans.  This is the intestinal yeast overgrowth that I mentioned in yesterday's post.  I tested positive for all three types of antibodies: IgG, IgA, and IgM.  Whereas the normal range is less than 1.0, my antibody levels were 1.3, 3.7, and 1.4 respectively.  The treatment is to continue with a low carb/no sugar diet, and take 1 month's worth of prescription Diflucan to reign in the infection.

Unfortunately, once you have Candida infection in the intestines, you are always very susceptible to it returning.  (One source I read said that the Candida grows roots in the lining of your intestines, so even if you kill the yeast, the roots lay dormant, ready to regrow the yeast if you feed them with sugar! Yikes!) So even after we get it under control, I will not be able to drink alcohol or eat sugary foods again without reactivating it.  But, if I get my health back, I'll count myself lucky.

Vitamin D3 deficiency  The lab's quoted "normal range" is 30-100 ng/mL.  (I discussed the controversy and problems with "normal ranges" in an earlier post).  Mine was 40 ng/mL.  My doctor said a healthy level for someone my age should be in the 60-100 range.  I had been taking 3-4,000 IU's of D3 supplements per day, and noticing an improvement in my shortness of breath.  Dr. W upped the dosage to 8-10,000. We'll test the levels again in two months.

Dr. W was emphatic that raising my Vitamin D levels is a critical component to recovery.  He says raising my D3 to optimum levels will jump start my immune system and raise my energy level significantly.

Pregnenolone  Pregnenolone is another hormone that is critical for energy and memory.  My levels were  extremely low: 23 out of a listed range of 13-208.  Dr. W wants to bring me up to around 130, so he prescribed 100mg/day of a Pregnenolone/DHEA supplement.

Thyroid.  We had already determined that my thyroid levels were low from my past visit to Dr. W.  The Thyroflex test measured the levels in my tissues, which were low.  Plus, my hands and feet and been icicles ever since I got sick.  These blood tests confirmed low-ish T3 levels, and high Reverse T3 levels.  Dr. W prescribed me T3 supplementation, starting with 10 mcg/day, and escalating to 25 after 10 days.

Testosterone.  I was a little surprised to learn that he thought my Testosterone levels are low.  But I'm so manly, I thought.  But apparently this hormone is responsible for a lot more than libido and muscle strength: things like brain function, energy level, and heart function.  Dr. W perscribed a cream that I am supposed to rub on my skin once a day and it absorbs topically.

Natural Killer Cells  Finally, Dr. W had ordered a test of my Natural Killer Cell (NKC) activity.  NKC's are a type of white blood cells that are critical for immune function, and are usually found to be low in people with ME.  Unfortunately, the lab performed the wrong kind of NKC test and Dr. W was unable to interpret the results.  We will redo the test correctly in two months.

But for now, the plan is to add these treatments to the supplements I was already taking and see if I can manage some improvement.  I've already improved somewhat from the existing regimen plus diet changes.  I remain slightly skeptical that all of the above is necessary, but if/when I improve, I can experiment with removing some of these treatments one by one to determine what I truly need.

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