That's right, bruthas and sistahs. Let me start by testifying that I have been eating what your average cardiologist would consider insanely massive amounts of saturated fat. Lots and lots of heavy cream. Whole milk. Gobs and gobs of coconut oil. Mountains of butter. In short, I've been gorging on all the things mainstream medicine and the government have been saying will kill me.
But last month I read Gary Taubes's Good Calories, Bad Calories
, so now I have a clue about how to read a lipid profile, which is a good thing because otherwise I would be distinctly confused by what this one says. Total cholesterol at 265 is flagged as too high, as is LDL at 176. But triglycerides are 93, well within range, and HDL is 70, with an asterisk which says HDL >59 is considered a negative risk for coronary heart disease. So which is it, risk or no risk?
In 1977, the National Institutes of Health funded five studies to look at how well LDL cholesterol and VLDL triglyceride numbers predicted heart disease. This was the first time any money had been put into looking at anything other than total cholesterol. The result? Writes Taubes:
In men and women fifty and older, Gordon and his collaborators wrote in the Framingham paper, "total cholesterol per se is not a risk factor for coronary heart disease at all." LDL cholesterol was a "marginal" risk factor.
HDL was the "striking" revelation. Both analyses confirmed that the higher the HDL cholesterol the lower the triglycerides and the risk of heart disease.....For those fifty and older, which is the age at which heart disease ceases to be a rare condition, HDL was the only reliable predictor of risk.
Later Taubes describes work done by Ronald Krauss in the 1980s -- Krauss has worked at NIH and Berkeley, and chaired the nutrition committee of the American Heart Association, so he's as establishment as they come even though he's not singing the mainstream song. Krauss studied LDL cholesterol, which can be subdivided into large, fluffy LDL and small, dense LDL. Fluffy is good. Dense is bad.
Pattern A is dominated by large, fluffy LDL and implies a low risk of heart disease; pattern B is the dangerous one, with predominantly small, dense LDL. Pattern B is invariably accompanied by high triglycerides and low HDL. Pattern A is not. Krauss and his collaborators reported in JAMA that heart disease patients were three times more likely to have pattern B than pattern A. Krauss called B the atherogenic profile.
Well, if that's the case, why do we bother with total cholesterol numbers at all? Shouldn't we be looking at HDL and which pattern of LDL we have?
The answer to that is a labyrinthine tale involving stodgy bureaucracy, scientific ego, and agencies not willing to reverse course when a mistake, especially a large mistake involving very large amounts of money, has been made. I can't cover it in a blog post (and I'm only giving the Cliff Notes on cholesterol here as well). You'll just have to read GCBC (a seminal healthgeek work in any case) for the fascinating full story. But consider this. HDL is raised by eating saturated fat. In 1977, when the HDL news broke, new dietary guidelines had just been published by McGovern's Senate committee, guidelines that stressed avoiding saturated fat and eating more carbohydrates. The NIH had committed over $250 million to various studies attempting to prove that lowering total cholesterol, in part by eating little saturated fat, would lower risk of heart disease. The sudden revelation that high HDL could actually be protective, and you can accomplish that by eating steak and eggs? Very inconvenient indeed.
So we heard no screech of the brakes as the health bureaucracies realized the error of their ways and reversed direction. Nope. Instead we got more vilification of butter and cream, 26.6 million American adults with heart disease, and lipid profiles with contradictory messages. It takes decades for real science to become widely known, and longer if it has to swim upstream against a tide of money headed in the opposite direction. Don't even get me started on statins.
More on interpreting cholesterol numbers here.
We're going to have to keep an eye on this, LD said solemnly, pointing to my total cholesterol number. But I was reading the part where it said I have a negative risk, and smirking a little to myself, thinking about the Hollandaise sauce I was going to have on my eggs when I got home.
Yesterday I took the train to DC to see my Lyme doc and go over the big stack of test results piling up over the last weeks. I'm posting this primarily for you readers with Lyme, so you can compare protocols and general hypotheses.
My bloodwork showed various indications of a deranged immune system, such as high TPO thyroid antibodies, low lymphs, and IgM positives to cytomegalovirus, HHV-6, and HSV. An IgM reaction comes after a new exposure, and LD (Lyme Doc) explained that those viruses are certainly ones I've been exposed to long before now, but my immune system is on hyperdrive, and confused, and running around trying to put out fires all over my body but not in a competent fashion.
I asked if there was any way to tell when I had gotten infected, partly wanting to know if it was before having children, since Lyme can be transmitted in utero. But LD said no. I could have gotten infected way before showing symptoms, or not -- that the only thing we know for sure is when my immune system got overwhelmed and started losing the battle.
I'd been reading about various protocols for the various coinfections -- babesia, bartonella, and ehrlichia, among others -- and that different antibotics and other meds are used depending on which coinfections you have. LD said that with my profile, she assumes I have them all. Such an overachiever for once! She thinks the current testing is unreliable enough not to be worth doing, and I'm happy about that because it ain't cheap.
What she plans to do is a kind of dance with the bacteria, hitting one and then another, retreating, BAM, retreating, going for another. This kind of slow intermittent antibiotic treatment is based on the work of Thomas McPherson Brown, who had tremendous success treating rheumatoid arthritis patients in this manner, with the idea that the body was not attacking its own joints for no reason, but because there was a devilishly sneaky infection (often mycoplasma) which was causing the immune response.
So this will not be carpet-bombing in an attempt to cleanse my body of infection. It will be, as I said, a kind of dance -- I'm picturing the tango -- where the antibiotics are gently killing the bacteria, then backing off, not scaring it into driving deeper into the tissues where it does more damage and is harder to reach. The idea is to train my immune system to take over the work, to give it some order and direction so that it will calm down and focus its efforts where those efforts will matter.
I have asked my super-organized daughter to help me make a system, because with my memory problems this protocol is daunting to manage. Monday, Wednesday, and Friday I will take Zithromax, Septra DS, and Omnicef, all twice a day. On Thursday and Friday, Flagyl. Nattokinase with the antibiotics because the enzyme "pokes holes" in the bacterial wall so the antibiotics will be more effective. Also adding 5000 iu of vitamin D3 and carnitine to the boatload of supplements I'm already taking. I reluctantly agreed to take Neurotin to calm my central nervous system down and hopefully get better quality sleep. After two weeks, I take a holiday of a week with no antibiotics or Nattokinase.
LD said to expect neurological and other symptoms to get worse, and then slowly better. My seat belt is buckled. I haven't put myself in a doctor's hands like this in many years, and I'm filled with fear and relief and optimism in about equal parts. I'm more than willing to go through worse if it's on the way to better, much better. I spoke to my 87 year old father this morning, who told me he takes five pills every day. That sounds pretty good to me. If I can get back to just five pills, I will be doing a tango down the middle of my street.
I know. You're thinking, how can you cheer about getting five feet of tubing shoved up your bum? Do you get that much satisfaction out of doing the recommended over-age-50 check and finding out you don't have cancer? Well, no. Hardly.
You've heard how colonoscopies work. The day before, a liquid diet. In late afternoon, you start drinking a horrifically noxious drink, a brew of propylene glycol and sodium and saccharine, which brings on bowel explosions that rival rocket launches in their intensity. Boom! Go back to your book, turn the page, and BOOM! For hours, and more hours. The next morning, continue with four more glasses of the gaggalacious drink, many more trips to the bathroom, all of which left my colon in a state of pristine cleanliness.
Yes, of course, it's comedy gold, but Dave Barry already worked the territory so I'll just link him and get on with my story.
So the process of the clean-out is nasty and uncomfortable. My anus felt like raw hamburger by the time I was done. As will Uranus. (sorry. so hard to find self-control.) It's not easy drinking so much horrible-tasting stuff without throwing up -- and I had it easy since my doc prescribed Half-Lytely, which is only half as many glasses to get down.
But. An unexpected thing happened. Late that night, after not eating all day and all the endless explosions, I noticed that I felt, actually, kind of good. Not all shaky from not eating, not fragile, not even dreading the procedure the next day. And in the morning, through the final stages of prep and going to the hospital, I was not anxious. I was, strangely, practically devil-may-care. Compared to how I was doing only the day before, facing a painless no-big-deal MRI, I was a different person.
I filled out the forms without feeling like it hurt my brain to remember my phone number. I joked with the nurses. The moment of the five-feet-into-the-bum was fast approaching, and still, I felt no worry in the least, confident that whatever happened, I could handle it.
I had been negotiating with my GI doc so as not to be given Versed, a drug I loathe. Don't need any extra memory problems, thank you, and I wanted to be awake to see unfolding events on the monitor, hear what the doc had to say, and admittedly, coast serenely on fentanyl. When she came in to see me just beforehand, the doc tried to tell me that just a little Versed would be OK, that most patients want the sedation because --
I interrupted her. I'm not scared, I said. At all. She looked at me curiously. "I see you're not," she said, surprised. "The woman before you was in tears at this stage."
I told her I actually felt better than I had in a long time, and she said that other patients had said the same.
The reason, I have no doubt, is that the nuclear clean-out accomplishes what all the probiotics and antifungals and herbals I've been taking have not been able to -- the multiple bacterial infections in my gut were gotten rid of in a matter of hours. And the result is a dramatically clearer head, no anxiety, and an utterly different placement in the world. And just to be clear, this was before the fentanyl!
The rest of the procedure went swimmingly. I was given an IV and heart monitors, wheeled into a high-tech room and hooked up to a blood pressure monitor, and got my first hit of fentanyl. In a few minutes I felt a little cramp and thought uh-oh! But the doc said she was already around the first turn -- and I hadn't even realized she'd begun. Apparently my colon is twisty and turny, like many women's, so there were some painful moments as she negotiated the turns, but she ordered more fentanyl and asked the nurse to press hard on my abdomen to stabilize my colon and those things helped a lot.
I got to see my appendix, the entrance to the small intestine called the cecum, and the amazing tube -- so minty fresh! -- that is my colon. She painlessly snipped a few polyps that did not look dire, and that was that. Less than half an hour altogether. They pump you full of air to make room for the colonoscope, so afterwards you rip some epic farts which makes being wheeled down hospital corridors more amusing than usual.
So if you've got bacterial infections -- and if you've got brain fog, fatigue, or anxiety that's a distinct possibility -- look forward to your first colonoscopy. You may feel tremendously better afterwards. I'm eating probiotics like mad, trying to get the good guys settled in before the bad guys have a chance to come back. If this effect lasts long at all, even the horrible drink will have been worth it. The public farting, the multiple sticks looking for a vein in my dehydrated arm, the Three-Mile-Island evacuations -- all worth it. I almost feel like myself again.
MRI this morning. My new Lyme doc is looking for pituitary tumors, which would explain my hormonal instability, and I assume he is looking for infections as well. I thought it would better not to know a whole lot about what he is looking for, so I could focus my anxiety on the procedure instead of the results.
I used to be able to handle stress very well. In fact, I liked stress. I liked writing for deadlines, speaking in front of large groups of people without notes, whitewater canoeing, jumping horses. But now? Lying down on the sliding gurney with a washcloth over my eyes was enough to send my heart racing, put a cold sweat on my palms, and make me short of breath. Nothing about it hurts or is uncomfortable. But having to stay completely still for 45 minutes, flat on my back -- the idea of that seemed physically impossible, at least to my pituitary.
I took a moment to pull myself together, told myself that I was able to breathe even though my adrenals were screaming YOU ARE SUFFOCATING! and got through it.
I'll say this. It is inexpressibly better being a person who can handle stress than one who cannot. It changes the entire experience of being in the world. It makes living anywhere close to the present moment nearly impossible, except for the moments that are comfortably under a soft quilt, with a full belly, and nothing on the schedule. One of the worst parts of it is that the anxiety-prone are misunderstood by everyone who is not. There is no way for them to to get it. Which of course, in a situation like an MRI where you feel at the mercy of the machine and the tech, kicks the anxiety up a notch or two.
Before being slid into the tube, I asked the tech how long it would take, and if the pictures were of brain structures and not activity. I asked because I was planning to meditate, which would affect activity. He said, "Oh, your MRI is looking at structures only. There is another kind but you aren't having that one." But then he added, "Don't worry, I won't be able to see your thoughts!"
Honestly. I know I was on the brink of a panic attack, but I did not quit school after kindergarten. In my trips to the hospital lately, that is how people talk to me, often in sing-song voices, as though English is not my first language or even my second. There is an unstated assumption expressed in all communications that I couldn't possibly understand what is going on. It's past noon, I'm only able to drink and not eat today in preparation for tomorrow's colonoscopy, so yes, I am cranky. I'm handling condescension as badly as stress.
The clanging of the magnets made meditation impossible, but oddly I found the noise a little comforting. It was so loud I couldn't really think of anything else, so I just counted clangs and bangs and the numbers were soothing even though doubtless I was miscounting as I went along, like a kindergartener, although I did not think "eleventeen" at any point.
So this afternoon I'm playing Settlers of Catan with my two children, eleven and nine years old. If you haven't played, it's a simple enough game in which you build settlements and cities and pick up resource cards depending on the roll of the dice. What makes the game a little more fun than other board games is that you might pick up cards on anyone's roll, so you're not just watching and waiting for your turn to come around.
In this game I am red. My settlements and cities are red, my roads are red. When the dice roll matches a numbered space adjacent to my red settlement and cities, I'm supposed to pick up a card. But I'm picking up cards for the orange settlements. Or looking at the dice, looking at the board, and concluding there are no matches for red, and picking up nothing, when in fact I should have picked up two or three cards.
In this version of Catan, Cities and Knights, there is also a third die that comes up in various colors, and again with the matching and the picking up of a different type of card, Progress Cards. My son told me later that since we are playing to win he doesn't think it's his job to remind me I'm failing to pick up my Progress Cards. I don't think it's his job either. But, and yet, however...apparently I cannot manage it on my own.
My conversation is not exactly snappy either. I'm asking a question about a rule, and both children are looking at me with bafflement. Eventually one of them realizes that I've been saying "knight" when I meant to say "robber." I find lately that when I have word retrieval problems, I am substituting some other nearby word and not realizing it until I see the confused expression of the person I am talking to.
It's just a game, says my daughter, because she worries my failures will make me sad. And oh yeah, they do. Of course it's not the loss of a game of Catan (though that burns!). It's the loss of who I used to be. Among other things, a person to be reckoned with when it came to board games. Not a person whose brain skips and jumps and blanks out, unpredictably. A person who gets pity from her children because she loses board games so often, and not gallantly.
Here's some ridiculous optimism: I am looking at my Catan performance as a good sign, because after many months of taking some herbal drops to fight Lyme (samento and cumanda), my new Lyme doc asked me three weeks ago to stop them. So I have been naked against the bacteria for that long, and the neurological symptoms are notably increasing. Brain not working, various extremities numb and tingly, migrating joint pain, shooting pains here and there, and etc etc.
This is a hopeful development because it points to Lyme being the actual cause of my long list of health problems. The bacteria that causes Lyme hides in tissues, not blood, so it (and the other bacteria that hang out with it) is notoriously difficult to test for and diagnose. Having a positive reaction to treatment, whether it's herbal or antibiotic, makes the diagnosis clearer. Or, in this case, a negative reaction to stopping treatment. It's a Progress Card of a kind.
