Sunday, January 2, 2011

The Back Story

I've got some new things to talk about, but first I want to explain where I am coming from.

My mother died an unpeaceful death from lymphoma, which I have no doubt was the result of undiagnosed celiac disease or non-celiac gluten sensitivity. During the treatment for cancer, she had runaway diarrhea to which the doctor's response was an annoyed suggestion to get Lomotil. There was no nutritional counseling whatsoever, even though she had an intestinal cancer. Six months before her death, before the lymphoma diagnosis, she was gravely ill with sudden weight loss, night sweats, and extreme pain -- so a doctor operated on her back, ignoring or just not bothering to notice her abdomen which was distended with a large tumor.

My son at age eighteen months got a double ear infection (a possible symptom of gluten sensitivity), and was put on antibiotics. He was also given a series of vaccines while he was on antibiotics. The ear infection never really went away, he was given course after course of antibiotics, and before long, he was diagnosed with Asperger's Syndrome and PDD-NOS. The developmental pediatrician told me there was no cure and that we should start him, at age 5, on antidepressants in an attempt to manage symptoms, which in his case -- at age 5 ! -- were suicidal ideation, very frequent rages in which he screamed about wanting to kill people, rampant inflexibility, and in general just a very unhappy and physically unwell boy.

Well, I had seen what mainstream medicine had done to my mother. I had been too unhinged with fear and grief, and her illness and death happened so quickly, that I had not been able to pull myself together and try to do anything to help. But with my son, at least eventually, it was different. In his early years, on the many trips to the pediatrician's office or the emergency room, I had a nagging sense that what the doctors were doing was not helping. If I had been braver, and not wanted the responsibility to lie in someone else's hands instead of my own, I would have realized sooner that not only were the doctors not helping, they were making my son sicker and sicker.

But I did figure it out, finally, when he was about five years old. I stopped taking him to the doctor and began searching on the internet for ways to help him. Even in those early years of the autism epidemic, there were a lot of groups online, mostly consisting of mothers, all of them groping for some way to help our sick children. We didn't have the luxury of published double-blind peer-reviewed studies (and of course the published peer-reviewed part was proven to be corrupt and unreliable anyway), we didn't have much guidance at all except trial and error and a few non-doctors who were possibly nuts or geniuses.

So we tried a lot of different stuff to get our children well. Most of what we tried would have been unfamiliar at best to our pediatricians or family doctors, at worst it would have been scorned. We tried different diets, we tried chelation, we tried all manner of supplement combinations, probiotics, antibacterials, and anti-virals. We relied on our own reports of what was working and what was not. We clung to anecdotal evidence because that was all we had. And eventually, slowly, my son got well. So that now he has no diagnosis and no symptoms of autism at all. Zero.

All of which is to say: I don't trust mainstream medicine. I think it claims more knowledge and expertise than it actually has, I think it claims much more authority than it deserves. And my other point, which will be clear in my next post, is that I am unafraid to try things that are not mainstream, that sound perhaps kooky, that have nothing but anecdotal evidence to support them. I do the best research I can to see what are the possible negative outcomes of a treatment -- and if the harm is negligible, I say: why not?

Tuesday, November 30, 2010

All Wired Up

My latest fashion accessory is a Holter monitor, which is going to chart my heartbeats for twenty four hours. So I have should end up with a graph that shows the pauses and lurches it's been doing for the last few days.

I'm deep in the American medical system now, piling up specialists like crazy. But my cardiologist is a gem. During the consultation when I was in the ER, he prescribed beta blockers, and I had a day and a half before seeing him in his office to get worked up about not wanting to take them, and prepared myself for the usual fight. But no! He said now that he'd gotten a look at me -- and seen my more usual low blood pressure readings -- he changed his mind. No meds. Hoo-ray.

The gem of a cardiologist explains my lurching heart as being irritated by something. Could be the antibiotics, could be bacterial die-off, could be, well, anything. He says I can have as many as HALF of my heartbeats be irregular, and be all right. But it depends when they come. If they're all in a row, one after another...that's not good. So we want the irregularity to be irregular. As long as that's the case, eventually my heart is likely to settle down and cut it the heck out.

Meanwhile my Lyme doctor has stopped the antibiotic/antiprotozoan cycle I was in the middle of, and raised dosages of Neurontin and Ativan, in an attempt to calm my central nervous system down. I would have to say that's working, because right now, as I type, I am not actually awake. I am in some drifting drug haze somewhere apart from absolute consciousness. My heart seems to be doing fewer backflips. Or maybe I just can't pay enough attention to notice. I look like something from Lost in Space, and I am exactly that.

Saturday, November 27, 2010

Adventures With Mepron

I've been taking Mepron since the beginning of October. It's atovaquone, an anti-protozoal, meant to kill off the Lyme co-infection Babesia. As you can see from the pictures my son took, it's not exactly tasty. In fact, it's like eating paint -- it's gloppingly thick, fluorescent yellow,  and the taste is profoundly bitter with a gloss of artifical sweetener and artificial fruitiness.

In other words, it's absolutely horrible. And a bottle costs $1000.

But! I am responding to the new protocol. Babesia likes to hang out where there are red blood cells, and I've been having symptoms in my spleen and heart as it dies off. I've had some very good days mixed in here and there which are keeping me hopeful.

The bad days are still very bad. Trying to ride this edge of killing as many bugs as my body can handle but no more -- it's tricky. Some days I think it's too much, I've gone too far. I'm getting stabbing pain all over, I can't think straight at all, my heart is misbehaving, and I'm under a blanket of nausea. Those days I spend time in Epsom baths, eat a lot of probiotics, take Marinol, and play a lot of World of Warcraft. 

But then the holiday week comes up and I get a normal day, or two -- and I mean, I feel a glimpse of what it must feel like to be all the way healthy, and I don't even know how long it's been since I felt that way. Maybe never. 

I meant to make this blog more of an accounting of how the treatment is going, week by week. But I just haven't felt well enough, or clear-headed enough, to manage it. I'm hoping this is a bad hump to get over and things will be easier soon.

For the record, the protocol this cycle is Mepron, 10 capsules of artimisinin (from wormwood. I had a small moment of trying to convince myself it was capsulized absinthe and I was really in Paris in 1890, but that, uh, didn't work.), doxy 500 mgs BID, zith 500 mgs BID, nattokinase. That's MWF for two weeks, with Flagyl 500 mgs BID thrown in on the last two days of the cycle.

This Lyme treatment ain't for sissies.

Friday, September 10, 2010


The Herxheimer reaction was discovered by a pair of brothers, both dermatologists, who found that when treating syphilitic patients, the patients got significantly worse after treatment began, and then got better. By worse, I mean nausea, drenching sweat, fever, rigor, vomiting. Interestingly, syphilis is an infection of spirochetal bacteria, just as Lyme is. And monitoring and evaluating the Herxheimer reaction is the way a good Lyme doctor figures out the next step of treatment.

I knew to expect some herxing once I started the course of antibiotics, but I tried not to think too much about it beforehand. Once it began, I searched all over the internet for patient stories, because I wanted some company, and some reassurance that this particular misery was expected, and more important, was going to have a happy ending. I didn't find much though. On forums, people post about herxing, others who have gone through it respond with compassion as they shudder at the memories, but nobody goes into much detail. So I am going to.

The first week, I had a marked increase in neurological symptoms. The bottom of my right foot was almost entirely numb, so that I limped when I walked, not that I was doing a lot of walking. My left arm felt asleep, my left thumb tingled all the time. I had shooting pains in my torso and up my right leg. Diarrhea. Joint pain in knees and elbows. Intensifying of brain fog so that it was difficult to make conversation. Bad fatigue, but that was nothing new. Achy all over. Periods of feeling a sense of impending doom, where I would sit on the edge of the bed, waiting for...I wasn't sure what. But it was going to be bad.

On doctor's orders, I increased my dose of Neurontin -- now I'm taking 200 mg in the morning and at night. This helps a lot with the numbness and with sleep. I'm so resistant to taking any kind of prescription meds, yet here I am, on ten of them. At least. And in that bad place of taking meds to counteract the side effect of other meds. But I'm telling myself that this is different, because the primary meds are the antibiotics that are killing the bacteria, not a drug that simply tamps down symptoms. The point of the Neurontin, and the Ativan, is to calm my central nervous system down enough that I can sleep. Because without sleep, there is no getting better.

In subsequent weeks, my arms and legs twitch suddenly and without warning, so that I look like a marionette. Nausea is especially bad on the days I take Flagyl. My short term memory is really impaired, making reading too taxing much of the time. My tongue and throat are covered with thrush. And fatigue -- I try to make the kids breakfast in the morning, fold/hang/do a load of laundry, and then I'm done. Until tomorrow.

Don't you just gag looking at that heap? That's only the first handful of the day, with more to come.

I'm writing this post for people who are facing treatment and want to know what someone else's herx looks like, and for myself, because once I get healthy I want to look back and think WHEW, glad that's over! And to complete the before-and-after record, here's a photobooth from this morning. 

So that's what herxing looks like. At least I don't have syphilis.

Thursday, August 26, 2010

Lyme report

I started my new Lyme protocol on August 9th, and the ensuing brain fog is still really thick, but I did want to describe what's going on for any readers with Lyme.

I'm taking Septra DS, Zithromycin, and Omnicef on MWF, twice a day. Plus Flagyl ThF, twice a day. Two weeks on, one week off.  Mega probiotics including Saccharomyces boulardii.

So far I have this to say: yikes.  All symptoms worsened, some dramatically so.  LD was completely correct to insist on my taking Neurontin -- she said my central nervous system was going to go nuts once on antibiotics and oh yeah, she was right. My sleep is messed up, short term memory a goner, shooting nerve pain all over, no energy at all.


At least this worsening seems to be following the usual path. I watched Under Our Skin with my sister-in-law last week, and as harrowing as the movie is at times, it was pretty wonderful to see people sicker than I've ever been rebound to good health.

Anyway, obviously I'm hoping that this period is over quickly and I'll be back to posting. At the moment though, I can barely string a sentence together.

Sunday, August 8, 2010

Finding the Food

Easily the most important moment in trying to make significant changes in the way you eat is the moment you buy the food. If high fructose corn syrup, Oreos, and Mountain Dew don't make it into your grocery cart, you skip that whole routine back at home of "Have it now? Save it for later? Maybe just one? Oh what the hell, I'll finish the box and be done with it!"

So to wean yourself away from processed food you can steer your cart around the perimeter of the store, hitting the vegetables, fruit, dairy, and meat sections and then straight to the checkout line. It's those inner aisles where the junk sits, and obviously if you don't go down them you can't lose your head.

That's what I did for years, ever since starting the Feingold Diet for my son back in 2002. But since then, there's been a genuine food revolution, and now it's easier than ever to get your food directly from the farm.  Now I'm lucky enough to get meat and eggs from Polyface Farm, my milk from Avery's Branch Farm (and when I say my milk, I'm not kidding. Thanks to Virginia law, I own two shares of a Jersey cow.) I get vegetables and fruit from our local farmer's market.

Three ways this is massively better than supermarket shopping: first, the taste is vastly superior for all the foods just off the farm. We're so spoiled by Polyface chicken that a Bell & Evans organic roaster seems flabby and tasteless now. Second, the nutritional content as well is shockingly better for the farm food. In a comparison done by Mother Earth News:

                        regular supermarket eggs              Polyface eggs
Vitamin E          .97                                                  7.37
Vitamin A          487                                                 763
beta carotene   10                                                   62
omega-3 fats    .03                                                  .71
cholesterol        423                                                 292
saturated fat      3.1                                                 2.31

Not just marginally better, eh? Polyface, with its pastured chickens rotating through new grass, crushes the competition, those sad chickens jammed in -- uh, I don't want to think about it. Did you watch Food, Inc. yet?

Third, and this is really the point of this post, making the change from supermarket to farm makes getting your food much easier, once you get used to the new habit. I pick up milk once a week, meat and eggs once a month, fruit and vegetables once a week. Yes, I still have to pop over to Whole Foods or Integral Yoga for stuff I can't get from the farm yet, such as mushrooms and cans of chipotle, and to support my serious cheese habit. But at least for nearly three-quarters of the year, most of what we eat comes straight from the farm, and the cries of happiness at the dinner table are much louder and more delirious because of it. 

If you're looking for a milk source, try here. For farms in your area that sell direct to the customer, look here.

Wednesday, August 4, 2010