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Supplements for CFS

Posted Oct 06 2010 4:00pm
On my recent post about supplement safety , I promised to tell you about nutritional supplements I take for CFS.  I've been putting this off for a long time just because it's a long list!  (NOTE:  This photo is a couple of years old.  I thought we took a lot of pills then - ha!  Now, with Jamie and I both having Lyme, plus CFS, I fill a total of 12 pill reminder boxes each week for the 3 of us!!  (Craig only uses one).  This post is only about the supplements we take; there are also lots of prescription medications.

For starters, I have a list on my computer (one for each of us, myself and my sons) of all of the medications and supplements we take, with columns for Name, Strength, Dosing, and Reason.  I include everything on these lists - prescription, over-the-counter, and supplements - because they all have side effects and interactions.  I carry copies in my purse in case of emergency and give an updated list to the doctor each time one of us has an appointment.  The doctors love it!

Before I list what I take, I have to put in my two cents about so-called natural products.  With a background in chemical engineering, I can tell you with confidence that everything, including medications and supplements, is made of chemicals (even water!).  I know some people prefer supplements to pharmaceuticals because they are "natural", but in my opinion, you're much safer with medications, if there is one available for what you need.  Pharmaceuticals have to undergo rigorous testing before they are made available and generally only contain one active ingredient.  There are no similar safety nets in place for supplements and herbals.  In addition, natural does not necessarily mean safe.  Since there are no regulations, many natural products contain pesticide residue or other harmful unintended ingredients.  You should use great caution before starting any kind of supplement because there are no regulations at all in place for ensuring safety nor for labeling dangerous side effects (hence, the Consumer Reports study on safety of supplements).

The supplements I take are those that have some sort of research behind them indicating they might be of help to someone with CFS.  Before I start any new supplement, I check several sources to verify that it is safe, that there are no dangerous side effects, and that it will not interact with what I already take.  For instance, some supplements touted for energy also lower blood pressure as a side effect - good for most people but bad for those of us with CFS!  Here are a few of my sources
All of these websites have lists of supplement data sheets, but often the ones for CFS are less common.  I also have a big reference book here at home.  For checking both information and interactions, Drug Digest is a great resource.  If you click on Check Interactions, you can enter ALL of the medications and supplements you take.

So, the following all have some sort of research behind them on efficacy, and I've checked that they don't interact with other medications or supplements I take.  Generally, I try something myself first (before using it on my kids), and I try to stick with only those where I see some improvement or where the research on helping CFS is overwhelming.  Still, I worry that we're throwing our money away!

Here's my list of supplements and why I take them
  • Licorice root - orthostatic intolerance (increases water retention and blood pressure)
  • Multi-probiotic (I take All-Flora by New Chapter because it is dairy-free) - immune system support, GI problems
  • RM-10 (mushroom blend) - immune system dysfunction
  • Multi-vitamin - general health
  • Alpha Lipoic Acid - Strong anti-oxidant for mitochondrial dysfunction
  • Acetyl-L-Carnitine - ditto (I take a combination pill that combines both of these)
  • Calcium (with D and Mg) - because I can't have dairy
  • Milk Thistle - glutathione depletion and liver support (anyone who takes lots of medications and supplements should take milk thistle)
  • N-Acetyl-L-Cysteine (NAC) - glutathione depletion (I really noticed a difference with this one)
  • Coenzyme Q10 - mitochondrial dysfunction, cardiac support
  • Olive Leaf Extract - strong anti-viral, antibiotic, and anti-fungal (everyone in our family takes it whenever they have been exposed to a virus or feel a cold starting)
  • Valerian - a very mild sedative that I take before nap time; for me, its effects only last an hour
  • D-ribose - mitochondrial dysfunction/energy and exercise intolerance (Jamie and I have definitely noticed a difference since we started this a few months ago)
  • Epicor (hydrolyzed yeast extract) - immune system dysfunction (this one is new for me - the jury's still out but it's supposed to increase Natural Killer cell function and improve immune function)
In addition, my Lyme doctor added
  • Artemisinin - supposed to help the antibiotics penetrate tissues where the Lyme hide out
  • ADP (emulsified oregano - yes, oregano!  it smells just like the spice) - strong anti-viral, antibiotic, and anti-fungal
My sons don't take all of these (Jamie takes most; Craig none), but they also take Thermotabs (salt tablets).  I can't because they upset my stomach.

Whew.  See what I mean about worrying about wasting money?

This is just what has worked for me, but I need to emphasize that nothing on this list has made a big difference, just small, incremental improvements.  A few I take on faith because the reserarch says they help, but I haven't actually noticed a difference.  Please don't take this post as medical advice because we are all different.

Before starting any new supplement, you should always check out its side effects and interactions and always talk to your doctor first.  Hope this is helpful to you.

Oh, and I'd love to hear from any of you who have found a supplement that has helped you.
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