Wednesday, October 06, 2010

Supplements for CFS

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.

22 comments:

  1. Thanks for posting. I might add olive leaf to my list. I haven't noticed much of a difference with NAC. Some days B6 makes a difference and others not. It might be a matter of if your body actually needs the stuff or not on a particular day.

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  2. I've tried some of the B vitamins, including B-6, but - like a lot of things - it gave me diarrhea. I know it helps some - I suppose I should try again, maybe with a lower dose.

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  3. GREAT info, Sue! I have been thinking about posting all the supplements and other products I know are helping my health (including an expensive water purifying system), but haven't gotten around to it yet. I listed some of the supplements I take in one of my recent posts. I didn't know milk thistle was important to take for supplements as well as medicines. I usually only take it after I have taken a drug like ibuprofin or Tylenol. I will start taking it every morning. Oh, freeze dried stinging nettle is helpful for allergies! Dr. Weil's website is a good source of info.

    Judy

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  4. Judy -

    See? That's just what I was talking about - how people automatically consider so-called natural products safe, even when they contain the same active ingredients as medications.

    Your body can't tell the difference between a pharmaceutical and a supplement - All of it gets processed by your liver, so it's good to support liver function with milk thistle.

    Sue

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  5. Anonymous6:12 PM

    Wow that's some list! I'd wondered about licorice root. The only tea I can tolerate these days without getting more weak has this in it. How is the Reishi/Mushroom blend? I found cordyceps to be kind of awful but haven't tried other mushrooms.

    I don't take much these days besides VCO and electrolytes. sometimes I take Co-Q10 but I've had a bit of insomnia with it.

    I wouldn't consider a product safe because it is natural! Lyme disease is completely natural, after all, as are a huge number of poisons.

    Thanks for the good reminder to everyone.

    D.

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  6. D -

    The mushroom blend has about 10 varieties in it. It's in pill form. It's one of those thing where I haven't necessarily noticed improvement, but I stay on it because there is so much research behind mushrooms helping to balance the immune system, and I feel strongly that immune system dysfunction is at the heart of CFS.

    What is VCO?

    Sue

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  7. Anonymous9:13 PM

    Virgin coconut oil.

    Thanks for the info about mushrooms.

    D.

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  8. D -

    I've heard about various coconut supplements - does it help?

    Sue

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  9. I have fallen in love with Phenocane. I love it. I have the ability to take one or several to help with my pain, stiffness, and what not and it really works. In addition, I have multiple tears in my right knee and the Phenocane wipes out any pain I have. As a matter of fact, I ran out for a few days and started having pain and it took me a day or two to realize why! The minute I was back on it, my knee felt brand new!

    I also love Formula 303. Nothing "natural" has worked for my sleep issues. But this stuff, I take it 1-2 hours before bed and I fall asleep naturally and wake up with no hangover. I also wake up without an alarm clock. Love it.

    I just added Zyflamed after reading this: Zyflamend – Zyflamend™ is a supplement blend containing 10 herbs which are known for their ability to promote a healthy inflammation response: rosemary, tumeric (cucumin), ginger, holy basil, green tea, hu zhang, Chinese goldthread, bayberry, oregano, and baikal skullcap. One of the ingredients, holy basil, is also an antioxidant and supports healthy cortisol levels, which are two additional areas Dr. Mikovits recommends strengthening.

    I am just starting on it so I will have to let you know if I notice any difference. Everything - just about - that I take is now New Chapter. I love their products.

    Oh, one other thing that I changed and noticed a difference is I switched to a multi-vitamin for stress and I add stress advantage with it. Whoa! I noticed a much calmer feeling in my body. This has become a staple for me!

    You and I are are on a lot of the same supplements! Great minds think alike, eh!

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  10. Hi Sue,

    I have been folling your blog for a short while and have found this post really useful!

    How are you finding the D-Ribose? I started taking it in June to get me through my last few months at university - I definitely would not have been able to complete it without it. before I could only do 2 hours of work before I collapsed and whilst taking this I could do 5 hours per day! But I have stopped taking it for now as I didn't want to have too much energy and risk wanting to push my body too far.

    Also I found when I took the recommended dose (3 scoops per day) I felt very uneasy and "buzzy"!!! I also could not sleep on that dose, so I cut down to one scoop and still could not sleep, so then I went down to half a scoop and that seemed to just give me enough energy for my work but not too much so that I could not sleep.

    I also have experience with coconut oil but have not persued it properly yet as they tell you to take 2 tablespoons per day and it is a rather horrible consistency so only manage 1 teaspoon at the moment!!

    Thank you for posting about this it is really helpful.

    Kitty x

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  11. Anonymous4:48 PM

    Hi Sue,

    Somewhat complicated with the VCO... I really think it helps with candida and creates a healthy bacterial balance.

    Aside from bacteria, though, I don't know how it affects viruses/retroviruses.
    What I think is that it causes a die off of viruses from my system, but I don't know if it's powerful enough to create eventual improvement. I think I was herxing for weeks at a high dose (weak, cold, no appetite) and eventually went to a smaller dose because I just couldn't face the possibility that it could actually just cause a herx without improvement.

    There's some complexities with salicylate intolerance that I'm trying to get my head around... If I have that, then VCO is bad, but how to know if the reaction I have is an intolerance or a herx...

    anyway, there's anecdotal evidence of VCO being good for lipid-coated viruses. Supposedly Lauricidin is a supplement that is an altered form of VCO and more powerful. I haven't been able to get it in Canada.

    There's a thread about lauricidin on Phoenix Rising. It might be worth trying if you can get it, but expect herxing with that one!

    D.

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  12. Hi there! I'd love to know how much olive leaf you take and how much d-ribose and NAC? Thank you!

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  13. Hi, Brita -

    I take 2 olive leaf caplets twice a day - the brand I use has 825 mg per day. I increased the dose after I got Lyme disease two years ago, but most of the doctors who recommend it suggest fairly high doses.

    For NAC, I take 1 500 mg capsule 3 times a day.

    I plan to do a longer post just on D-ribose, but I'm currently taking 1 scoop (5 g) after breakfast. 3 scoops a day is recommended but I found if I take it later in the day, it disrupts my sleep for my nap or for bedtime. I do sometimes take an extra scoop after my afternoon nap, if I'm very active that day.

    Hope that helps!

    Sue

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  14. Thx, Sue! I'd love to know the doses for your other supplements, too. I know everyone is different but since no dr. i have (though i spend thousands on specialists for all my various issues) is well-versed in this, i'm trying to do my own research. Thx so much!!! Your blog really keeps me going....

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  15. Brita -

    If you send me an e-mail (click on my profile for an e-mail link), I will be glad to send you my full list which includes doses.

    Sue

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  16. Thank you! will do!

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  17. Ashley8:20 PM

    I heard if you are taking Licorice root you have to watch your potassium levels. It depletes potassium and can cause similar symptoms to CFS. Dr. Nancy Klimas talks about this at 6:23 in this video. http://vimeo.com/14941689

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  18. That's very true, Ashley, whether you take Licorice or Florinef (they have the same effect) - they help your body hold onto more sodium which can in turn deplete potassium. Dr. Rowe suggests that anyone on Florinef take potassium supplements and the same would be true for licorice. I was taking a very small dose and am no longer taking it.

    Thanks for the tip and the video link!

    Sue

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  19. Anonymous7:25 PM

    We have just figured out that CFS is what our daughter is suffering from. I am doing all the research I can as her mom. I wanted to ask what type of doctor is most likely to be helpful in getting a diagnosis? I am trying to get her in to see an endrocrinologist.

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    1. So sorry to hear you are going through this as well.

      Finding a doctor to treat CFS is tricky - the important thing is not so much the specialty but just finding a doctor that understands how to treat CFS - which can be difficult!

      Try starting with this blog post that lists links to several online databases for CFS doctors. They are organized by location so you can try to find someone nearby.

      If you'd like some personal advice, based on the region where you live, feel free to e-mail me at jacksonde at comcast.net.

      Also, be consider joining our group on Facebook for Parents with Kids/Teens/YAs with ME/CFS and Related Illnesses. here's the link:

      http://www.facebook.com/groups/164665786958252/

      Just click the join button (and to speed things along, send me an e-mail to tell me your name and that you've requested to join. I try to screen requestors to make sure they belong). This group is filled with excellent information on how to help your child, the best treatments, advice on how to handle school issues, plus a lot of warmth and support. Everyone in the group is a parent just like you. Hope to see you there - good luck!

      Sue

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  20. I know you wrote this post year ago, but I'm wondering if you have any thoughts on the supplement BRAND? I have been mostly buying Now Foods (for CoQ10, B2, selenium, alpha lipoic acid) because it is cheaper than most and readily available on Amazon... but I've seen a lot of blogs saying "you get what you pay for". Now, I'm worried! Any thoughts on the brands that you trust?

    Thank you!!

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    1. Hi, Elizabeth -

      The short answer is...I have absolutely no idea! I wonder the same thing about different brands. We have been consulting with a biochemist/registered dietician for my son, and in some cases, she does recommend particular brands that she says offer a different form of certain nutrients that is more absorbable, but generally, I don't know either.

      I think NOW brand is a respectable brand - our local health food store carries it.

      The best way to save money is to buy supplements online - the drugstores, health stores, etc, are 3-4 times more expensive! Much cheaper online in most cases. Oh, you did mention you order from amazon - their prices are usually decent.

      We order most of our supplements from Web Vitamins:

      http://webvitamins.com/

      I have used them for about 10 years - their prices are great, I usually get free shipping...but recently, their shipping times have gotten much longer, so I do have to plan ahead.

      And here are some articles from Consumer Reports on various supplements:

      http://consumerreports.org/cro/search.htm?&pageType=allResults&Ntpc=1&Ntpr=1&Ntx=mode+matchall&Ntk=ALL&Ne=8053&Nr=AND%28RecordType:CRO%29&N=4294949514&Ntt=supplements

      Good luck!

      Sue

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