Chronic fatigue, working through the Yasko protocol - Marcia's update

Discussion in 'Fibromyalgia Main Forum' started by mmorrison, Oct 21, 2008.

  1. mmorrison

    mmorrison New Member

    Hey everyone,

    I don't post here very often, but I thought since I'd written an update for the Yahoo Yasko group I would post it here also, to let people know how I've been.

    I had a day about 6 weeks ago when I felt WELL! It was WONDERFUL! And about half of the next day was pretty good too.

    Other than that, though, it's been tough. I'm better than I was a year ago this time. I can go to a party and enjoy it, instead of just making my way through it. That's a big plus (not that I go to a *lot* of parties, but once in awhile it's nice). But 90% of the time I feel tired, and draggy, and so badly brain-fogged that just getting through the usual tasks of the day (taking supplements, eating) is still a challenge. Paying bills and doing the laundry get forgotten or put off; good thing I've got most things set up on autopay, and don't have to go anywhere that requires fancy clothes. Reading is frequently difficult, and that's discouraging because when I'm well I love to read and learn new things. And my body aches all over a lot of the time.

    I'm on the full Yasko protocol, and currently taking close to 100 supplements a day. Tedious! It's hard to tell which ones help and which ones I could toss. I know for absolute sure that the B12 shots and patches help. When I run out of those I feel worse. I know for absolute sure that the mineral supplements help. When I skip those for several days my sleep suffers. I suspect the BH4 is important for me because I reacted so strongly to it when I first started it. I know for sure I need the calcium supplement (cal/mag/D/K) because I've got osteoporosis and need the calcium for my bones, even though osteoporosis is a "silent" condition (until your bones start to break!). All the herbal supplements? With those it's hard to tell. Their action is more subtle anyhow, even when they're doing what they're supposed to do.

    So. Improvements: hair is healthier and thicker, sleep is better, mood is steadier, energy is *slightly* better. Basal body temperature is higher. Normal for me has long been 97.4 F. These days it's often up to 98.0 or 98.2 F. It's really nice to not feel cold all the time, that's a big plus.

    After attending the AutismOne conference this past May, I decided to try going gluten-free. I've been pleasantly surprised at how much easier that is now than it was 30 years ago when I tried it previously. Sticking to a GF diet hasn't been too difficult. I haven't noticed any dramatic change in how I feel, but if I cheat I do feel more "gunked up" in my sinuses and chest afterwards. I also am trying to go dairy-free. That's more of a challenge. I cheat a little more often on that; I miss milk and cheese a *lot*. I keep a quart of goats' milk around to use in cooking. I don't mind that tanginess in other foods, but it still doesn't taste "right" to me to just drink straight. So far, I have to say that the change in diet hasn't made a dramatic difference. (Diet is a huge part of Dr Mullan's approach, by the way, and she herself keeps to a GF diet.)

    When I'm on the methylation supplements, my urine changes from a pale yellow to a deep golden color, and the scent is a little different too.

    One of the reasons I decided to try the Yasko protocol is the recommended lab tests. It makes sense to me to track levels of minerals and metabolites as you go, the roadmap as Dr Amy calls it. Unfortunately, my brain fog often interferes with organizing that part of things. I've been trying to run UTMs every 2-3 weeks, but fell off the wagon a couple months ago. I need to pull myself together and start sending samples in again for UTMs and the occasional UEE. Not to mention sending in the several samples that've been sitting in the freezer for a couple months waiting for me to get back on track.

    My lab tests (the UTMs, or Urine Toxic Metals) have shown me consistently excreting a whole assortment of metals. My son refers to me as "my mother, the toxic waste dump". Ha! I really wish I'd done a baseline UTM before I started the protocol. I wish there were a study showing what people normally excreted when *not* on the protocol, compared with people taking all the recommended supplements. Ah, well. Not likely any time soon. But still, I figure "better out than in" and it cheers me up to see results showing all the toxic stuff that was in me but isn't any more.

    I had blood drawn for the Vitamin Diagnostics Methylation Panel back in mid-June. I checked in with Dr Mullan's office after a couple months, no results yet. Now it's October... I called Dr Mullan's office, they said to call the lab. I called the lab. They said they got the blood sample 6/26 and sent the results back 7/22. So I called the doctor's office again. They looked through both the computer record and my (physical) file folder, didn't see it. I asked them to call the lab directly and then email me the status. Over on the Yahoo CFS_Yasko forum several people have posted their results, and I'll be interested to compare those whenever I finally get mine.

    Just got through a couple days of a nasty sinus headache. (Rivka, I hope your headache has gotten better by now!) Even with the GF diet, my sinuses drip almost all the time. Foo.

    I've been on the Yasko protocol for about 18 months now. No major changes over the last 6 months, just chugging along. From what I've read, it may take as long as 3 years to get through the whole process? I've been in Step 2 for awhile now. I'm hoping to eventually get to Step 3, remyelinization (sp?). My brain cells could certainly use the help. But I think I'm about ready to regroup and adjust things. First, get back on the horse with regular testing. After getting back a couple current tests (plus the missing methylation panel blood test), look at where that leads me and see what changes Dr Amy and Dr Mullan suggest. I think, based on test results from a couple years ago, that chronic systemic infection is part of the picture for me, and I may suggest to Dr Mullan a trial of Lyme-targeted antibiotics. I hate to mess up my gut balance, but knocking down the infectious load might help in the long run. For the same reason, I'm looking for someplace where I can try a couple sessions with a FIR sauna and/or a hyperbaric oxy chamber. (If anyone reading this is knows of places in the "north of Boston" area, I'd love to hear your recommendations.)

    I used to work as a computer customer support rep. I sort of approach my health in the same way. First check the basics. Test for ailments like cancer, diabetes, MS, etc. Okay, that all came back negative. Good. Now look at diet. Yep, that's pretty healthy, and even GF (and mostly CF) now. Exercise? Hm, could do better there. Vitamins? Minerals? Obscure bio-chemicals? Got those covered these days. What else is there? Get rid of the infectious load and improve the methylation cycle function. Maybe look into testing for mitochondrial dysfunction? But if my methylation cycle is compromised, that would cause the same symptoms as mito disease, wouldn't it? Allergy testing? Mold sensitivity? Could look into those things as well.

    This off-the-beaten-path medicine, Yasko and otherwise, is damned expensive. And with so many pills (as I mentioned before), tedious! To me it still seems like the best bet for improving my health in the long run. Maybe someday I'll find "the" solution and look back at all this and shake my head. Or maybe the answer is an "all of the above" approach. Right now I'm opting for "all of the above".

    I really wish, over a lifetime of less-than-great health, there had been a doctor with the drive and intellectual curiosity to sort this all out for me. Alas, as for many of us, no such luck. So it's up to me to be my own researcher and my own advocate. I listen to (and depending on the doctor) respect doctors' suggestions, but these days I'm just as often suggesting lab tests and asking "what if?" and "how about we try?". I get tired of it sometimes, and I get discouraged sometimes, but... The only alternative is giving up, and I'M NOT GIVING UP!

    So, there is my treatise.

    Thanks, dear readers, for being out there, it sure helps to know each of us is not in this alone.

    Marcia Morrison
    in Salem, Massachusetts
  2. moreinfoplease

    moreinfoplease New Member

    I am researching this protocol, and came upon your post. Thank you for sharing your experience. I was wondering if you could share what a ballpark figure would be for the cost of all supplements per month.

  3. Forebearance

    Forebearance Member

    Thank you for the update, Marcia! It's good to hear how you are doing.

    I have also found that the methylation supplements I take help my endocrine system. Just the three supplements from the simplified protocol that I've been taking for around 18 months have allowed me to go off DHEA and progesterone, and they have helped me sleep better and get thinner.

    All those effects could be a result of the methylation supplements raising levels of MSH, the master hormone. It's a theory I have, that these supps could raise MSH. They started helping my endocrine system even while I was still living in my apartment with toxic mold in it.

    When I had my MSH tested, it was 29, which is not bad for a person who has been sick for 18 years.

    I hope you continue to get good results from your Yasko-ing!

  4. glorac

    glorac New Member

    I'm struggling through Yasko's protocol and wondered how you are today. Did you have a methylation breakthrough?
  5. elliespad

    elliespad Member

    Marcia, I have a Far Infrared Sauna. If you happen to come to the Saratoga / Lake George region in New York, say for a vacation, I would be happy to let you use mine. Everyday if you want for as long as you want. For months, I don't mind.

    I come to the board here pretty much everyday so just send me a post. I am generally away during all of July and August and through Sept.4, so I wouldn't likely see any posts, or be around for you to use the sauna.

    I hope you continue to see improvement with the Yasko protocol.