Trying Out SAM-e (Smart People Can Do Dumb Things)

Screen Shot of image search for SAM-e

Another girlfriend suggested SAM-e, and since it connects to methylation and we know I have mega-MTHFR challenges as well as other methylation problems like COMT, I figured I’d give it a try. Before you read too far, the end of the experiment for me is a big fat “NO, DON’T DO THIS.” But, of course, it isn’t that simple. I’m still not feeling well, so I’m trying to keep this simple. In part, this is an example of how to research something before you decide on a new course of treatment for yourself, and in part it is a cautionary tale.

WHY I THOUGHT IT MIGHT HELP

What is SAM-e used for? The big ones are depression, osteoarthritis, fibromyalgia, and liver disease, but these are also mentioned.

ADHD
anti-aging
Alzheimer’s
anxiety
back pain
bursitis
chronic fatigue syndrome (CFS)
dementia
depression
fibromyalgia
heart disease
lead poisoning
liver disease
migraines
multiple sclerosis
osteoarthritis
Parkinson’s
premenstrual dysphoric disorder (PMDD)
premenstrual syndrome (PMS)
seizures
tendonitis

Well, with a list like that, I figure a lot of folk think the same thing I did: “Gee, several of those apply to me or my family. Who knows? Maybe it might help. Let’s give it a try.” The first piece I looked at clustered these into categories of (1) bone and join problems, (2) nervous system problems, and (3) organ health. Two of those are themes in my life, so it was making sense that it might be part of the picture. And I really really wanted to feel better.

WHAT I RESEARCHED BEFORE TAKING IT

No, I’m not so foolish as to simply dive in and start taking something on a whim. Everything we ingest can have effects like a drug; everything has a minimum and maximum recommended dose; everything has interactions and side-effects, indications and contraindications. I looked it up, in major drug databases as well as Google Scholar, Pubmed, and some drug databases. I looked for the interactions and side-effects (there are LOTS). I looked at signs of an overdose. Turns out there are two kinds of overdose: (1) over-methylation, which makes you jittery, anxious, sleepless, etc.; and (2) serotonin syndrome, which can be fatal, and starts out with agitation, restlessness, confusion, tachycardia, high blood pressure, muscle twitches, sweating, diarrhea, headache, shivering, fever, goosebumps.

I felt pretty prepared at that point, but there were a few more things I wanted to know. The importance of SAM-e in the methylation process was obvious with even a superficial web search. Since I have MTHFR deficiency and that is also a big problem with the methylation cycle, I wanted to make sure the two don’t interact in nasty ways. So I searched for information about interactions between SAM-e and methylfolate, warnings, precautions, etc.

This was more interesting. First off, it turns out that methylfolate helps people make their OWN SAM-e! They are part of the same cycle, and SAM-e is one of the by-products from MTHFR processing. Regarding taking both, there was virtually no solid evidence floating up to the top, but an awful lot of opinion and personal experience. (Guess I’m adding to that body of unclear literature.) I saw a lot of people saying, “If you have MTHFR deficiency, do not ever take SAM-e!” This was balanced by an equal number of folk saying the opposite. The overall picture was unclear. There was a lot that said to take them together, almost nothing about if you have an MTHFR deficiency.

I found one woman who described it as helpful for brief periods, and she described her genetics as similar to mine — heterozygous MTHFR, homozygous COMT (H62H & V158M), and celiac. She described reacting with an over-methylation response after a couple weeks, and I had gone through that when I started taking methylfolate and felt I know what to do. Just to be careful, I started out with the smallest dose I could find – 200mg.

WHAT HAPPENED

Part of what was motivating this was that general feeling of being unwell that I’ve had ever since I returned from my trip. I really want to feel better, but am feeling crummy. I thought about waiting to start SAM-e until I feel better, but based on what information I’d found I thought I knew what to expect. Either it wouldn’t do much, or I’d feel better.

I took a half dose on Monday. I felt basically the same as I’ve been feeling — generally crummy. Tuesday the same thing. I wasn’t sure if I’d been glutened or not. I took a couple days off, just to see. Then I thought maybe I hadn’t taken enough to notice a difference. [The problem with this was I had forgotten to look at how long it takes to feel an effect, and it varies depending on the problem.]

I was taking Friday as vacation, and thought I’d risk taking a larger dose, since I didn’t want to experiment if I was going to try to work. Instead of 200, I took 400. I continued to feel vaguely crummy, and then I started to feel as if I’d been glutened. I’d been eating “whole foods,” so I couldn’t imagine what it would have been, but I recognized the feeling. Fatigue. Brain fog. Wobbly. But not a hint of any digestive symptoms, no bloating, no hives. I was puzzled, but sleeping too much to figure it out. I had trouble sitting and standing, my joints hurt. I felt too weak to do much. Not normal symptoms included feeling hot, sweaty, feverish, flushed, confused, congested, chilling, spaced out, distractible. Then I got a headache, and my head feels strange in the back. So far, this has lasted three days. Each day has had a couple brief periods when I felt ok, before it would start up again, slightly milder than the day before.

WHAT I LEARNED AFTERWARDS

I went back and looked again at SAM-e overdose. Nope, these symptoms don’t match up, except for the headache. My symptoms were more like those indicators that someone needs more SAM-e. Very puzzling. I kept digging into literature about SAM-e. I tried taking extra methylfolate, but didn’t notice a difference. I did notice that my clear-headed time was in late afternoon, and every day I take a B-complex vitamin with my lunch. Then I stumbled into some information that SAM-e can cause problems if someone is deficient in B-vitamins (like me). Basically, it creates a lot of homocysteine, which the body can’t clear out because it needs more B-vitamins to do so.

I put 3 and 3 together. Maybe this was a SAM-e overdose, but my body couldn’t properly process the SAM-e? I tried taking extra B-vitamins to see if this helps clear the fog and confusion and fatigue. I’m not trying to do it all at once. I took a B12 and my usual B-complex, then waited a few hours and took another B-complex. So far it seems to be working. I’ll add an addendum tomorrow.

SOURCES

About.com, Alternative Medicine: SAMe, What Should I Know About It? http://altmedicine.about.com/od/treatmentsfromatod/a/SAMe.htm

Mayo Clinic: SAMe: Safety: http://www.mayoclinic.org/drugs-supplements/same/safety/hrb-20059935

Mayo Clinic: Serotonin syndrome: http://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/basics/definition/con-20028946

Natural Database: SAMe: http://naturaldatabase.therapeuticresearch.com/nd/PrintVersion.aspx?id=786

University of Maryland Medical Center:
S-adenosylmethionine http://umm.edu/health/medical/altmed/supplement/sadenosylmethionine

WebMD: SAMe: Uses, Side Effects, Interactions, and Warnings. http://www.webmd.com/vitamins-supplements/ingredientmono-786-SAMe.aspx?activeIngredientId=786&activeIngredientName=SAMe


UPDATE June 24, 2014:

Looks like I probably guessed right. The extra B-vitamins are helping, allowing me to get through the day. I couldn’t find anything about the length of time it takes to clear SAM-e from the body (personal reports range from on day to a couple weeks). I’ll probably have to take extra B-vitamins for a few more days.

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Ingredients, Not ‘Food’

Checkerboard Egg CartonOnions

When I was in Chicago for my business trip, I was staying with my friend Rita. She was worried about how to feed me safely, since she isn’t gluten free herself, and since I am what many people have told me is “freakishly hypersensitive.” I told her what I’ve heard other people say, “Stick to whole foods.” But what is whole foods? What does that mean? It isn’t Whole Foods, the grocery chain, it means something different, although there is some overlap. You can say the other meme, “Shop the outside edge of the grocery store,” but that is lot riskier and more vague. I tried to explain, but I wasn’t doing such a good job. She figured it out, and when she did she said, “You know, this isn’t that hard!” No, it isn’t, but it is hard to explain.

Farmer's Market - Sept 6, 2008Making Preserved Lemons

After I came back from Chicago, there was a day I was riding back home from sword practice with my friend, Charles. He was telling me a story about when he was young and one of his friend’s came over to hang out and then got hungry. He told his friend to look in the fridge, and his friend complained loudly, “Where’s the food? You don’t have any FOOD in here, all you have is INGREDIENTS!” To which Charles replied, “Ah, but with ingredients, you can MAKE food.”

“AHA!,” I thought, “That is how to explain it!” The idea of “whole foods,” what is my primary foods, what I usually eat, is actually made up of things that many other people don’t even think of as food. That was a revelation and a hard idea to wrap my head around. Kind of like talking different languages.

Pic of the day - Not Cucumbers, Not SquashOkra

While in Chicago, I was fine as long as I was at Rita’s, but I got into trouble that last day of the trip, after I left Rita’s and was traveling home, eating so-called gluten-free food from restaurants. When I was so badly glutened in Chicago, for some odd reason, I just haven’t been able to shake it since I came back. I’ll feel better for a couple hours here or there, but then something else will set me back, and I’ll feel rotten again. It’ll be a month in two days, I’m very tired of this. I’ve been trying all kinds of things, some of which will turn into other blogposts, I hope.

The past few months I read both Grain Brain by Perlmutter and Gluten Freedom by Fasano. I’d hoped to do a quick review of each of them, but to avoid doing that here, let’s simply say I found Grain Brain frustrating and Gluten Freedom fabulous. One of the things mentioned by Dr. Fasano in his book was “The Fasano Diet” for people who are hypersensitive (like me) or seem to have gluten-induced symptoms no matter how careful they are (like me).

2013-07-06 at 10.12.45Farmer's Market - Sept 6, 2008

I was interested in trying it out, but I didn’t find the description in the book terribly helpful. I read a blogpost by someone who is a patient of Dr. Fasano’s and is on the diet to try to get some insight.

The Gluten Contamination Elimination Diet (Summary Of Dr. Fasano’s Recent Paper) http://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

Frankly, this wasn’t much help either, but it did give a citation to the article for the Fasano Diet.

Justin R Hollon, Pamela A Cureton, Margaret L Martin, Elaine L Leonard Puppa, and Alessio Fasano. Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients. BMC Gastroenterology 2013, 13:40 http://www.biomedcentral.com/1471-230X/13/40

The guidelines for the diet are listed in Table 1.

Table 1: Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

Grains:
Allowed: Plain, unflavored, brown and white rice
Not Allowed: Millet, sorghum, buckwheat or other inherently gluten-free grains, seeds, or flours

Fruits/Vegetables:
Allowed: All fresh fruits/vegetables
Not allowed: Frozen, canned or dried

Proteins:
Allowed: Fresh meats, Fresh fish, Eggs, Dried beans, Unseasoned nuts in the shell
Not Allowed: Lunch meats, Ham, bacon; Other processed, self-basted or cured meat products

Dairy:
Allowed: Butter, yogurt (unflavored), milk (unflavored), aged cheeses
Not Allowed: Seasoned or flavored dairy products, Processed cheeses

Condiments:
Oils, vinegar, honey, salt
Flavored and malt vinegars

Beverages:
Allowed: 100% fruit/vegetable
Gluten-free supplemental formulas
Gatorade, milk, water

Hollon et al. BMC Gastroenterology 2013 13:40 doi:10.1186/1471-230X-13-40

I printed off the article, read it, highlighted, read it again. I still feel like the description just doesn’t answer my questions. They say in the article what criteria they use before putting a patient on the diet, what sort of problems patients had trying to stay on the diet, and that before starting the diet it is really important to consult with a dietician.

2013-07-06 at 10.53.492009 - Montebello's Rainy Day

Well. That’s nice. If I had a “real” celiac diagnosis, had had a biopsy, had a clue of the condition of my villi, then I might be able to get help with the symptoms, the ongoing challenges. I might be able to get someone to give me a referral. As it is, I’m on my own for a lot of this. So I’m trying to figure it out on my own.

Here are some examples of the types of questions I’m answering for myself. Please note, I DO NOT KNOW IF THE ANSWERS ARE RIGHT!

Q: No frozen meat?
A: Don’t buy it pre-frozen. You can buy fresh meat and freeze it yourself.

Q: No flavoured vinegars?
A: If you buy plain apple cider vinegar and fresh fruit or garlic, then flavor the vinegar yourself by soaking the flavoring fruit or garlic in the vinegar, since all of it is made from allowed ingredients, the result will also be allowed.

Here’s another example of my twisted flawed logic for trying to stumble through self-guidance for the Fasano Diet. Alright, rice is allowed. But rice makes me feel sick and quinoa makes me feel good. So, me, I’m using quinoa. Fresh chicken is allowed. Fresh onions. Fresh mushrooms. I can use salt. I can use butter. I can sauté the mushroom in butter with salt. I can grate “aged cheese” and use that (but should NOT use pre-grated cheese bought at the store). So then, I can make this, right? And this would count as “whole food” because all the ingredients were bought fresh and whole and then assembled into something by yours truly. And now I have food.

"Whole Food" sort of

On Getting Glutened

Field Training 2
Field Training 2; (US Army photo by Spc. Robert H. Baumgartner); 82nd Sustainment Brigade

People often ask me, “What is it like? What happens?” Some are sheepish or shy about asking, others are avid and openly curious, but either way they want to know. Sometimes they’ve heard it’s like having the flu, but don’t know that it can be different for different people.

Recently, I was traveling for the first time in a few years, and got badly glutened on the last day of the trip. it was the first travel day that I wasn’t able to make my own food, and had no choice but to buy “gluten free” food from restaurants. I will never know which food caused the trouble, but I do now remember quite vividly what my daily life was like before I went GF. I was trying to explain it to one of my best friends. The explanation went something like this.

“Imagine you’re a raw recruit in bootcamp. It’s the third day, and you’ve just realized this is going to be harder than you expected. Then the sergeant comes, and before you know you’re all suited up in 50 pounds of body armor, carrying two backpacks, and miles away from camp with no idea how long the hike will be. You’re dragging, trying to find a second wind, then crumpling; trying to find a third wind; a fourth …”

“I’m sorry,” said my girlfriend.

“No, wait,” I answered, “That’s just the beginning.”

“You realize you aren’t in bootcamp after all. You’re somewhere else, a forest or jungle or something. The weather is strange, hot, then cold. Or maybe you’re sick. You feel queasy, sweating and chilling at the same time. Somehow ants have crawled in under the armor, and they’re biting you, something fierce.

“And you’ve been drugged. You’re confused, not sure where you are, what you’re supposed to be doing, who you’re with. You just keep moving because if you don’t you feel like you’ll never move again. Your eyes keep closing, and half the time you are walking (stumbling, actually) with your eyes closed, catching a quick blurred glimpse, and falling closed again. But you are at least moving! Hey, that’s something to be proud of, right?

“And then you open your eyes. You’re in an office building, surrounded by people. You know you work with them, but you can’t remember their names. They are all looking at you, wary, like you just said something crazy or did something scary. You don’t remember. What did you say? What should you say? You shrug, grin lopsided, ask what’s next, as if it makes sense, and you pray that it does. But you still feel like you’re 200 pounds heavier and drugged.”

That’s what it feels like when I get glutened. How long did it last? This time was especially bad — around a week and a half. I managed to do what I needed to do for work, collapsed when I got home, made it through and made sense most of the time. And I am very, VERY grateful that this is no longer my everyday life. That it stops.