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

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

Sunday, April 1, 2012

Rating the effectiveness of my treatments

[2/12/13 note:  This post is out of date and needs to be updated.  I will update it soon.]

In today's post, I take inventory of all the supplements, medications and other treatments I have taken or am taking for ME/CFS and categorize them according to how much, if at all, they have helped me.  Obviously, nothing so far has been a "cure," but several treatments have reduced or eliminated certain symptoms.  I categorize the treatments into 5 tiers based on my level of certainty that they have helped.

Tier 1 - Very High Certainty

While nothing is 100%, below are treatments that I am 95% or more certain have helped:

Low-Carb, No-Processed-Sugar Diet - Within a week of changing my diet, my GI tract issues resolved.  On the rare occasions that I have "slipped" from this diet, those symptoms have briefly returned.  Signs of Candida, such as white film on tongue, have also diminished.

T3 Thyroid Hormone - 37.5 mg/day.  T3 has solved my body temperature issues. Prior to taking T3, I frequently felt colder than I should under the circumstances,  especially my hands and feet.  That is no longer a concern.  My doctor insists that T3 also improves energy, but I have not been able to specifically attribute my increase in energy to T3.

ImmunoStim - 3 capsules 2x/day.  As soon as I began taking this supplement, I stopped experiencing regular sore throats, which formerly affected me at least once or twice per week.  It also halted my regular swollen glands in the neck and armpit.  Unfortunately, at $52 per bottle ImmunoStim is very expensive.

D-Ribose - 5 grams/2x per day.  The effect is subtle, but definitely noticeable.  I experience a bounce in energy during the hour or two after taking a dose.  I also believe that Ribose effectively eliminated my POTS symptoms, which plagued me early in this journey.  I still experience POTS, but only very minimally.

Vitamin D3 - 5-10,000 IU's day.  Supplementing D3 is supposed to help with shortness of breath (SOB).  My D3 levels originally tested low (in the 30's) when I was experiencing frequent SOB.  After taking 10,000 IU's for a couple of months, my D3 serum level was in the 70s (close to optimal), and I now only experience SOB rarely.  I now take a maintenance dose of 5,000 IU/day.

Magnesium - At one point, I thought that my ME/CFS may be evolving into Fibromyalgia as well.   I was experiencing muscle pains all over my body.  I began supplementing approximately 300-500mg/day of Magnesium and the symptoms abated.  I believe it also improved my sleep.

Melatonin. Improved my sleep significantly.

Body pillow - As a side sleeper, I believe this pillow has improved my sleep. It's a much more ergonomic way to sleep.  Whereas before the body pillow, I would turn over 5 or 6 times a night--waking up a little each time--now I fall asleep in one position and wake up in the same position 8 hours later.  The difference is remarkable.  

Tier 2 - Fairly Certain

These are treatments that I am fairly certain are responsible for the improvements I experienced at or near the time I began the treatments, but about which, for various reason, I am less certain of their benefits.  

B12 Protocol (Specifically Fredd's protocol).  I sense a small bump of energy after taking the active B12 lozenges and the dibencozide, but I have not yet experienced the system-wide healing (the repair of the methylation cycle) that is supposed to accompany these types of treatments.  I have only experimented with this treatment for approximately 2 months, so I may not have given it enough time.

NT Factor - 2 tablets 2x/day.  I noticed a slight improvement in energy levels and a decrease in the length of crashes after beginning this supplement.

Pau D'Arco tea - I've noticed that the white film on my tongue - which is indicative of candida - dissipates when I drink this tea regularly. 

Pregnenolone - 10-100mg/day.  My pregnenolone levels tested low - in the lowest 5% of the normal range.  When I took 100mg of pregnenolone/day, I noticed an improvement in mental clarity, memory, and sharpness.  While I am not comfortable taking 100 mg every day (I normally take only 10 mg per day),  I will occasionally take 100 mg when the need arises.

Potassium - 300-1200 mg/day depending on need.  Muscle twitching, muscle cramps and brain fog afflicted me for a period of time after I began supplementing B12.  Potassium alleviated these symptoms.

Yoga.  No other form of exercise was remotely helpful -- in fact, most others caused a crash.  But there's something about the light stretching of yoga that usually ensures I have a good energy day.  Oddly enough, I use my wife's pre-natal yoga videos, which are tailored for low-energy workouts.

Breathe Right nasal strips - Improves my sleep, but I only use these when my nose is slightly stuffy.


Tier 3 - Uncertain But Hopeful

I haven't noticed any specific improvement from these supplements, but I continue to take most of them because the science behind them is sound and because I believe they may, individually or collectively, have contributed to my overall improvement.

Pro-biotics 2x day

Zinc 23mg/day

Fish Oil, DHA/EPA  - 100 mg/day with occasional breaks 

Milk Thistle - 1260/mg, 2-3x day, with occasional breaks - to protect the liver.

Multivitamin powder - 1 scoop every morning.

Thymic protein - 1 packet every 4 hours when getting sick.

CoQ10 - 200 mg/day

Vitamin C - An additional 500mg/day (on top of multivitamin) when getting sick or crashing

Acetyl L-carnitine - 200 mg/day

Nystatin (for candida) - 1.5MU/day for 2 months.

Coconut Oil (also for candida) - Whenever a recipe calls for the use of oil, we substitute coconut oil.  Regardless of whether it actually works against candida (some people swear by it), it tastes better anyway.  The only downside is it is more expensive than vegetable oil. 

Tier 4 - Too soon to tell 

These are treatments that are, by nature, supposed to be long term treatments and which I only recently started.  Over time, these treatments will likely move up or down on this list.

Famciclovir - 500mg 2x/day

Low Dose Naltrexone (LDN)  Starting at 1.1mg and working up to 4.5 mg/day

Tier 5 - Possibly made me worse

Fluconozole (generic for Diflucan) - I experienced a sharp increase in the pain in my kidney areas right after starting this medication.  The kidney area pain dissipated immediately after stopping the medication.

VSL3 probiotics - My experience with VSL3 is written about here.



2 comments:

  1. Wow, what a comprehensive list!! You have included a few things I have never heard of which is a bit remarkable because I've been aggressively researching treatments for 10 years now!

    I may copy this format for my own blog - it's a great summary.

    The things that have helped me the most are:

    trazodone & nortriptyline for sleep dysfunction
    beta blockers for OI
    LDN & Immunovir - both for immune dysfunction

    I may refer back to this when I need new ideas!

    Thanks -

    Sue

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  2. Thank you, Sue, for all three of your recent comments. And thanks for stopping by.

    I'm glad you mentioned Immunovir because I've been curious about it, and of course, I've read about your good experiences with it. I definitely plan to ask my doctor more about it at my next appointment.

    I continue to enjoy your blog.

    Regards,

    Patrick

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