My brain fog was so horrendous yesterday after work that it took me over two hours to compose an email about my current medications and supplements.
It really shouldn't have taken that long, especially considering most of them are already listed in my May 2009 post Medications and Treatments. I think what took the most mental energy was categorizing everything into groups that made more sense AND trying to include dosage information.
Anyway, I though it might be an interesting update to my blog, so here is my (slightly edited) email to Georgetown.
(Oh, and if you're wondering why I keep talking about Georgetown, check these out: Hoping to be a Human Guinea Pig, Georgetown CFS Study, and the official research link.)
Hello!
In a previous phone conversation, Dr. R asked for a list of my medications. Unless noted otherwise, I take these medications/supplements daily.
Diagnosed Conditions:
- Allergies
- Asthma
- Eczema
- Acid Reflux
- Irritable Bowel Syndrome
- Chronic Fatigue Syndrome
- Polycystic Ovarian Syndrome
- Thalassemia Minor
- Interesting to Note: In 2008, I developed migraines and had them on and off for several months; however, my migraines now seem to have been replaced with somewhat less severe headaches that occur more frequently.
Rx medications:
- Advair 250/50
- Albuterol (as needed)
- Flonase nasal spray
- Zoloft,12.5-25mg
- Yaz
- Tandem, 106 mg elemental iron (every other day)
Medications/Supplements provided through my PCP's office (specifically for my CFS):
- ATP-20, 20 mg Adenosine Triphosphate (twice a day)
- Glyceron Plus IM injections (combination of three substances, one of which is glycyrrhizin...I can't remember the other two) - about once a week if I remember (which ends up being less than once a week).
- Glutathione IV - a few times a year, because this treatment is a bit pricey and takes a while to administer, I don't go very often for this.
OTC Medications/Supplements recommended by one of my doctors (PCP, GI, or Allergy/Asthma doc):
- Zyrtec, 5mg (10 mg if allergies are really acting up)
- Vitamin D, 1000 I.U.
- Fish Oil, 1000 mg
- Hydrocortisone (for eczema)
- Lactase (I take this only when I remember...which is not very often)
- Multi-vitamin (every other day; I take a different multi on alternate days -- see below)
OTC Supplements based on Rich Van Konynenburg's research: "Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome" (I made sure to get permission from my PCP before starting this treatment plan). I take these supplements every other day:
- 1/2 tablet of Perque Activated B-12 Guard (1,000 mcg; full tablet is 2,000 mcg)
- 1/4 tablet of Metagenics FolaPro L-5 Methyl Tetrahydrofolate (200 mcg; full tablet is 800 mcg)
- 1/4 tablet of Metagenics ActiFolate (200 mcg; full tablet is 800 mcg)
- 1/4 tablet General (multi) Vitamin Neurological Health Formula
- 1 softgel Phosphatidyl Serine Complex (500 mg)
OTC Medications/Supplements I have chosen to take based on my own research to aid with my IBS:
- Citrucel fiber supplement, 1000 mg
- Some sort of probiotic (usually acidophilus, but I have been trying different ones lately), currently I'm taking Digestive Advantage IBS Bowel Fitness Formula (which includes Bacillus coagulans GBI-30, 6086)
OTC Medications/Supplements I take from time to time (i.e., less than once a week):
- Tylenol and/or Advil for headaches; I have headaches almost every day (though most of the time I try to avoid any headache medications since I'm already taking so many other things)
- Melatonin, 5mg (for insomnia)
- Benedryl, 25-50 mg (for insomnia, but only if I'm really desperate)
- PreparationH (if my hemorrhoids are acting up)
- Monistat for yeast infections
- Athlete's foot antifungals
Medications I took in the past for migraines (but no longer take):
- Midrin
- Relpax
- Interesting to Note: I found that these medications did not satisfactorily relieve my migraines, though they did help somewhat.
Other Important Info:
- I am currently undergoing immunotherapy for allergies to: trees, grasses, and dust mites.
- I have allergies to other things including quinolone antibiotics, the glue on bandaids, and all types of earrings. I have a sensitivity to mesalamine. When I last took it, it resulted in neurological problems and hair loss.
- I experienced relatively low ferritin levels (17ng/mL) earlier this year, which is why I am on iron supplements every other day. My last few tests have ranged between 40 and 50.
- I had relatively low vitamin D levels (29 ng/mL) earlier this year, which is why I am on daily vitamin D supplements. My last three blood tests have shown levels in the 40's.
I keep track of my oral medications/supplements by using a 7-day pill organizer that divides each day by Morn, Noon, Eve, Bed.
Please let me know if you need any additional information.
Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, nausea, brain fog, low fever that comes and goes.
Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5
7 comments:
It is an interesting update. Not surprised it took you two hours! Very precise and informative.
My own symptoms diary is now a month old. Are you seeing any trends yet? Interestingly I've noticed my pain increases as my mood improves.
All the best.
Wow, that's a lot of stuff....no wonder you were putting off listing it all!
When will you find out if you're in the study?
Hi Jo - I haven't really noticed any major trends yet. I think I probably need a bit more time. What a bummer that your pain gets worse as your mood improves!
Hi upnorth - I really don't know. I keep wishing the researchers would hurry up and contact me to officially schedule my time in DC, but I suppose they're busy keeping track of lots of potential research subjects and their schedules.
Very comprehensive list, Alyson! I keep an updated list of medications and supplements for me and my two sons (who also have CFS) with me at all times (I carry them in my purse). I figured it would be critical information to have in case of an emergency, plus it makes doctor's visits SO much easier! I just hand them an updated meds list. My list includes specific info on dosage and strength, again in case of emergency. if you're interested in seeing the way I've done it, just e-mail me.
You mentioned you take Lactase, so I;m guessing you're lactose intolerant. Me, too, and I just discovered that two of my meds have lactose in them! Most birth control pills contain lactose, so you may want to check with your pharmacist on Yaz - I don't know what I'm going to do about that one (I take Seasaonale). Cutting out lactose really improved my IBS symptoms, so I don't like to think I'm taking some every day with my pills!
You also mentioned that glutathione injections are expensive. You might want to consider two supplements that help your body make more glutathione - milk thistle and N-Acetyl-L-Cysteine (NAC). Both are inexpensive and also help with liver function (important with so many meds).
Hope that helps -
Sue
Hi, I see you are doing the Simplified Yasko protocol. Are you on the ME-CFS Methylation site, or the CFS-Yasko group? Just wondering. I like how you've set up your blog. I'm still struggling to figure out the technical issues. My brain just doesn't want to go there :)
My Blog is Search for the Cure: My Healing Journey, at cfsmethylation.blogspot.com
Hi Sue - Thanks for all the info. I like your idea about carrying around a printed out list of meds. I've thought about doing this but have never gotten around to it. I'll send you an email. My lactose intolerance isn't that bad unless I actually drink a glass of milk (which I unfortunately love... and Lactaid just doen't do it fo me).
Hi Janis - Thanks for visiting my blog! I'm on the Yahoo CFS-Yasko group site. I didn't know there were others. I'm going to add your blog to my list.
Thanks for this useful post, got so many useful tips to keep our brain healthy.
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