Category Archives: treatments

The needle and the damage done: three weeks on intravenous thiamine

Adventures in Nutritional TherapyAfter discovering that thiamine (vitamin B1) deficiency might be a factor in my insomnia, fatigue, brain fog, and chocolate/sugar cravings, I began experimenting with different formulations of it. Starting with the usual drugstore stuff, I moved on to two Japanese concoctions and then for a grand finale I tried a series of IV treatments to the tune of $1,700, almost none of it covered by insurance, with promising if not miraculous results.

Why thiamine? I initially tried thiamine after discovering it is involved in GABA production, an inhibitory neurotransmitter that’s a big factor in sleep. Thiamine is also involved in carbohydrate metabolism — converting food to energy — and I figured out a long time ago that my infuriating chocolate/sugar cravings must be caused by my brain’s inability to process glucose, which is what the brain runs on.

Thiamine deficiency is most commonly associated with alcoholics and diabetics. If you are neither one of those, your doctor won’t consider deficiency as a possibility. Extreme deficiency has recently been implicated in autism (but then, what hasn’t?), dysautonomia, or dysfunction of the autonomic nervous system, and multiple chemical sensitivities, among other things.

Thiamine hydrochloride (HCl), benfotiamine, and tetrahydrofurfuryl disulfide (TTFD). A post at C for Yourself alerted me to the different types of formulations and their wide variations in quality. (It’s disturbing to think that a lot of nutrient deficiency research is based on crappily manufactured, minimally effective supplements.) Thiamine HCl made me nauseous. Benfotiamine, at 900 mg a day, tripled my energy in about four days, reduced my sugar cravings, made me able to sense my muscles again for the first time in years, improved my brain fog, and rendered my insomnia total.

The TTFD was harder to locate. At first I could only find a topical cream formulated for autistic kids who can’t take pills. As I’ve mentioned elsewhere, a lot of people with longstanding unresolved health problems find themselves on autism websites and forums, because parents and doctors of autistic children have been forced to go far beyond conventional medicine in their search for help for their kids.

Holy cow, it was awful. Did I mention that thiamine is derived from garlic? It took three showers to get the smell off. I did feel safe from vampires for the first time in a long time, though.

Eventually I found 50 mg TTFD tablets online, but couldn’t find any info about dosage ranges except for the bottle’s instructions, and I haven’t paid any attention to that in years.

Doctor’s appointment. When I realized that one of the biggest thiamine researchers, Derrick Lonsdale, was 20 minutes away, I made an appointment with him to see if 1) he thought thiamine deficiency could indeed be a major factor in my symptoms and 2) what the heck dosage I should use.

He said I presented an interesting case, that he uses up to eight tablets a day of the TTFD with his patients, and that IV application is a good way to get your levels up fast. (Here’s a list of the lab tests he ordered and a total rundown of my expenses.)

Advantages of IV administration. As I understand it, the IV dose (he uses 25 mg) is used almost entirely by the body and gets the thiamine where it needs to go faster and in a more uniform application than tablets, which are at the mercy of the vagaries of your digestive system. The TTFD is thus more likely to find its way to your brain faster. I picture a sort of basting of the tissues, but I also don’t really know what I’m talking about and sometimes I doubt the experts do, either.

After the IV sessions I went back to the 50 mg tablets. Dr. Lonsdale said he doesn’t know how much of each is absorbed by the body, and that I’d have to experiment with the dose.

IV treatments. The IV treatments require at least a day in between each. They take either 30 minutes or three hours apiece, depending on which accompanying nutrient therapy drip you get. I signed up for a three-hour “bag” for the first treatment, but couldn’t sit still that long and left after 2.5 hours. For the remaining treatments I used the smaller “Myer’s cocktail” drip. Here’s a list of what’s in the two preparations (minus the 25 mg TTFD).

The flophouse clinic is pleasant and quiet and has lots of light. Rows of blue recliners fill two rooms and white chains (for the IV bags) hang from the ceiling on either side of each chair, like a very relaxed slave ship.

The TTFD is shot into the IV from a syringe . It is an odd sensation. For about three minutes my head fills with the smell and taste of garlic-infused melting plastic. One of the nurses told me that other patients describe it as burning rubber.

Observations a week after treatment:

  • small increase in energy, but not back to what the benfotiamine was doing
  • lowered magnesium, as Dr. Lonsdale warns about. Symptoms for me are lowered mood and dry, peeling skin. He advises soaking the feet for 30 minutes in epsom salts, but I just take 400-600 mg of magnesium citrate.
  • a little light-headed after each treatment, but not so that I can’t drive
  • lowered riboflavin (vitamin B2) levels. B1 and B2 seem to work together and if you’re low in one, you’re often low in the other. My eyes get tired and feel like sandpaper and my lips crack.
  • sleep was not adversely affected. After the fifth treatment I slept better, but it only lasted a few days. I had to start taking iron again, which always stops me sleeping, as it was getting so low I couldn’t function. I found a reference in a Science Daily article indicating that thiamine binds to iron, which would be a big problem, but couldn’t find any other citations to back it up.
  • chocolate/sugar jonesing was a bit reduced, but not as dramatically as with benfotiamine. The effect wore off within three days after an IV session.
  • the abdominal pain I complained about in this post disappeared. I didn’t notice until Dr. Lonsdale asked about it.

I did have two strange experiences in the hours just after the first treatment. At the grocery store I suddenly felt that all the food smells were a lot stronger and more intense. It lasted a few seconds and then was gone. At home it happened again. I’m guessing that it was due to something in the nutritional IV, rather than the TTFD.

I’ll follow up in a later post.

____________________
Illustration: Remix by MRhea of 1959 pulp novel cover found here.

A few ways to simplify your life if you’re energy-challenged

In the years I had to deal with limited mental and physical energy, I made some adjustments to my life that were individually small but added up to make a significant difference in my sense of well-being. Some of them I adapted from the various “lifestyle design” books I’ve read over the years. Basically they involve exerting a little more control over your environment to remove daily irritations that become mental burrs in your brain.

1. Get over the idea that Money Already Spent trumps your Time and Effort. Learn how to translate expenditures into physical and mental terms. If you spent $250 on a Turkish bathrobe, but it’s so heavy it unbalances the washer twice every time you wash it, that physical output requirement plus the mental irritation lower its value.

Assign an hourly value to your time and weigh the cost of errands against it. If you want to return a $35.00 item but it takes 60 minutes to go to the store and back, and your hourly value is $25.00, it might not be worth it to you. (Of course sometimes it’s the principle of not being taken advantage of with a crappy product that matters.)

2. Make daily to-do lists that you can accomplish the majority of, even if it means including items such as “pet the dog” or “walk from bedroom to living room.”

3. Give away or toss possessions you don’t use, including stuff in storage, books you meant to read someday and haven’t, and clothes waiting to be mended. If you’re not using it, someone else probably needs it more. And as Timothy Ferriss says in The 4-Hour Workweek:

“…clutter creates indecision and distractions, consuming attention… It is impossible to realize how distracting all the crap is — whether porcelain dolls, sports cars, or ragged T-shirts — until you get rid of it.”

4. Walk through your home and record every little annoying thought that occurs to you. Take a few weeks. Make a list of everything and either fix the problem or trash it.

  • The treadmill that needs a surge protector or God forbid it will be fried in a storm
  • The rug that trips 3 out of 5 houseguests
  • The photo that reminds you of that bitch who insulted you at that wedding
  • The stepcan you have to contort yourself to toss items into

5. Do the same with your furniture. American households are very cookie-cutter: a table with four chairs, a sofa, a coffee table with magazines on it.

  • Rearrange your furniture so that you can walk more or less in a smooth line from room to room. Consider the kinetic energy involved in, say, coming to an abrupt stop and making a hard right turn 14 times a day.
  • If you never entertain, you can eliminate extra seating and use your dining room for something else — your train set or as a library or a game room.

6. Do the same with your lifestyle. This is a little harder because it requires identifying social conventions or aspects of your personality you might not think about. Embrace your quirks, and remember that convention is often stupid. Think of foot binding, or those big wooden forks everyone had on their kitchen walls in the 60s and 70s.

  • My example: I cannot stand seeing the mail when I get home from work. I rent a UPS Store mailbox and only pick up my mail when I feel like it. I auto-pay most bills.
  • Give yourself permission to weigh the mental value of making more elaborate and expensive adjustments to your home. It might be even more important to your mental health if you have to stay at home more often because of your physical health.
  • If the news depresses you, don’t read/watch/listen to it. Who cares if you don’t know about the latest serial killer or the riots in Palm Springs or the name of your mayor?

7. Never, ever finish a book or movie you don’t like.

Review of CureTogether, a crowd-sourced health research tool

CureTogether is a free self-tracking online health tool has been around since 2008. The website was originally started for people with chronic pain to post and rate the different treatments they’d tried, but the list of conditions has grown to 500 over the years, including non-chronic ones.

For each condition you can report the symptoms you’ve experienced and the treatments you’ve tried, and rate the treatments’ effectiveness. You can also view all the data collected for each condition in the form of easy-to-understand graphs showing effectiveness, popularity, how many people reported each symptom and tried each treatment, etc.

You enter your data for each condition in the form of surveys, starting with a list of symptoms, to which you can add your own. (Someone added “inability to swim in cold water” for fatigue.) The editor in me wonders who cleans up the entries, as I can see five people with skin conditions entering psoriasis, itchy skin, dry skin, etc.

Next is a survey of treatments, again with the option of adding your own. When you check off or write in a treatment, you then have the option to list any side effects you experienced. Finally, you indicate what you think caused your fatigue or boils or parasitic twin, and you can add a comment about what you’ve learned about your condition that might be of use to others.

I was curious to see how many new treatments I could find for conditions I was familiar with, and to what extent prescription drugs feature in the treatments. In the small selection of conditions I looked at, I found about what I’d expect in terms of prescriptions — a lot — but there were a decent number of non-Rx approaches, too.

Here’s one of the statistics infographics for eye floaters, which tend to be visited upon people with lousy myopia and, oddly enough, patients of lengthy surgeries requiring a face-down position, such as back surgery. I had never heard of omega-3 fatty acids as a treatment so I’m going to add that to my list of things to try.

You can also track certain aspects of your health on a daily and monthly basis, which are displayed in a graph. Weight, calories, and sleep are the default, but you can add your own as long as you specify the units. I added “cannibalistic urges” as a test. Hopefully that will not cause someone in a basement office somewhere in DC to start a file on me.

The site’s blog highlights those conditions that have collected significant input already, and reports on how CureTogether’s results compare with academic or medical studies. CureTogether also shares their results with researchers at places like MIT Media Lab and the Mayo Clinic.

Altogether I found it an interesting tool, so I’ll add it to the Resources and references page.

CureTogether also refers the user to these other health tracking sites, only one of which, the forums on MedHelp, I’d ever seen before.

PatientsLikeMe
MedHelp (which includes a section for pets!)
MediGuard
23andWe
HealthTap
Genomera
Edison
Google Health

Exercise idea for mental function when you’re energy-challenged

For all that the experts go on about exercise and mental function, walking, which is all I’ve been able to manage for a while, never does a thing for mine, no matter how winded I am when I finish. It turns out I need a different kind of exercise for that.

After I started taking the more bioavailable forms of folate and vitamin K, I would very occasionally have a day where I was unusually productive. Finally it occurred to me that the day before each I’m-a-genius day, I had spent 30 minutes vacuuming the upholstery with my hardcore HEPA-filtered anti-allergen handheld vacuum, which weighs 6.5 pounds. It’s a royal pain after about 10 minutes of use, but what it does for my sinuses is a miracle, so I deal with it.

Needless to say, I’m not about to vacuum every day. Instead I get out my 6-pound exercise ball and pretend to do free throws (without actually releasing the ball, obviously) for a few sets of however-many reps, then do it again every few hours. I increase the reps when it gets too easy.

Vacuuming definitely had not had that effect before the folate and vitamin K2. Deficiencies of the two cause anemia, which is associated with less-than-optimal brain function due to insufficient red blood cells, which are needed to move oxygen around. But apparently correcting that isn’t enough…you have to get the blood to the brain in the first place. And for me, walking doesn’t quite cut it.

Seven fomenters of brain fog

Several factors combined together to cause me years of spaciness and difficulty concentrating. Highlights of this period included giving the wrong last name when called on in class and almost getting my head wedged between two floors of a department store while riding the escalator. Most of the causes were ferreted out after I went gluten-free, and now I can face a big project and a tight deadline without sweating it too much, given enough Pepsi.

The problem is that metabolizing an acre’s worth of high-fructose corn syrup when you’re 25 is one thing; now it’s quite another. I’m still looking for the final pieces to this puzzle.

The main causes were:

1. and 2. High histamine, caused at least in part by low iodine

I discovered this by accident when I was working day and night on a project while playing host to a cold. Out of desperation I started mainlining vitamin C — something like 1,000 mg an hour, all day. After two days of that I realized I was thinking a lot better than normal. After some research I discovered that vitamin C lowers histamine; that in some people histamine is too high all the time, and not always with allergy-like symptoms; and that histamine occurs naturally in food, some much more so than others. Now I finally had part of the answer as to why certain foods had recently started making me spacey: eggs, rice, large amounts of protein, kimchee.

The second part of the question was why I had it now, when I hadn’t before. An uncorrected, and thus steadily worsening, iodine deficiency would explain it. According to some experts, it is rampant now that we avoid (iodized) salt. Insufficient iodine will cause a rise in histidine, which the body converts into histamine.

Another theory is that I’m not making enough of a certain enzyme, amylase, that breaks down carbs. Which with a recovering celiac’s innards wouldn’t be surprising.

3. Leaky gut

A classic celiac legacy. A damaged gut can cause dairy to be only partially broken down, and it so happens that some of those only-partially-broken-down particles happen to be in the form of opioids, as in opium, which then escape into the bloodstream and make you loopy.

4. Iron deficiency

Common enough among all women, never mind celiacs. For various reasons though, it was never possible for me to get my levels up to ideal numbers.

5. Folate deficiency

Folic acid, a type of folate supplement, never did much for me so I never investigated it very far. When I learned that it’s not a very efficient form of folate, I tried the superior form (methylfolate) and discovered that large doses made a noticeable difference in my ability to concentrate. However, at a certain amount — which sadly is also the amount that makes my fingernails look REALLY GOOD — it then raises histamine, which leaves me back where I started it made me really spacey, which felt like elevated histamine. I am not clear on what that was — my understanding is that unmethylated folic acid can raise your histamine if you’re a poor methylator, but that methylfolate would not. I really don’t know.

6. SAD, which is probably vitamin D deficiency

If I don’t use my high-intensity lamp in the fall and winter, I turn into a zombie and eat everything in sight. And stop sleeping. And think thoughts that make me look around for Hank Williams.

7. Insufficient essential fatty acids (EFAs)

These helped for about a year, then made my insomnia worse. Now they give me scary headaches AND total insomnia.

Other suspects I’ve looked at in my brain fog investigation were candida, digestive enzymes, vitamin B12, zinc, and calcium and magnesium. The latter two, once I got levels up to normal, reduced jitteriness and listlessness, which made it easier to concentrate. The rest did not seem to be involved. YMMV.

Kinda-sorta helpful approaches to sciatica

Adventures in Nutritional TherapyI don’t know how non-telecommuting workers cope with a bout of acute sciatica if they can’t take time off. There is no way I could’ve functioned at my desk. I tried one morning and had to return home to recline with my laptop for five more weeks, fantasizing about slitting my backside open with an Exacto blade, pulling out the nerve, and drowning it in a bin of icewater.

Perhaps they’re doped to the gills? All my doctor offered me was Aleve, which was a joke.

Finally I went to Needleman the acupuncturist. I spent an hour on my side with needles from the nape of my neck to my ankle, like a brontosaurus. By the time I left the pain was gone, but it crept back during my 30-minute drive home. So if you do have a medical acupuncturist in your town who can treat you for sciatica, have someone chauffeur you so that you can recline in the back seat on the way home.

At Needleman’s recommendation I visited a new osteopath. The pain had already started to taper off the day of my appointment. By the time I got in my car after the session, which didn’t involve as much violent cracking as I like but a lot of weird and undignified stretching, the pain was gone for good.

At the time the sciatica started, after a hamstring stretch went horribly wrong, I was convinced it was brought on by a surfeit of vitamin A, plus the overzealous stretch. For about a year I could count on a twinge of sciatic pain whenever I ate foods high in copper or vitamin A, such as liver and pate. Now I think it wasn’t so much that I had too much of those nutrients, but that I had too little zinc, and in large enough amounts the two can compete with zinc to lower the zinc even more.

Occasionally if the twinge got strong enough I’d do a yoga triangle pose and that was enough to stop it. (In this video the instructor is saying “lift your THIGHS,” not “lift your tights,” in case you were confused by her accent.)

____________________
Illustration: detail of “Odalisque,” Jules Joseph Lefebvre, 1874, {{PD-Art}}. Remix by MRhea.