NEW SERIES: GAME CHANGERS. POST #1

I've been slacking in the medical tips department, but I'm resolved to do better! My plan is to be more systematic, writing about one medication per post.

We all remember Miracle Max,
from The Princess Bride.
He was right, miracles take time.

This series is about what works for me. (This is basically a re-branding of posts with that tag. You can find these very practical posts in the word cloud to the left.) I wish I could say I've found the low-cost, one-single-pill, covered-by-insurance cure for Chronic Lyme. That is not so. Some of these things will be covered by insurance, others not. In addition, what works for me is a multi-step process throughout the day.

And yet, I've been reminded recently that my life is now unbelievably good compared to what it used to be. I've come to this point after years of trial and error, and with input from several good doctors. 


I wish, for the sake of everyone reading this, that things were simpler, medication-wise. But the human body is complex, illness is complex, and medicine is therefore complex. Stay strong, Lymies!

(And remember, medical researchers are working hard. Find more on that front at lymedisease.org.)







So here's the subject of this post:

I take this every morning, right before I get out of bed, and again at approx 12:30 /1 pm. This is to support my adrenal glands, which do not function well due to damage from Lyme. (For the record, I’m not advertising for Thorne Adrenal Cortex. It happens to be the brand I take but another brand would probably work just as well.)

Low adrenal function was the first clear medical diagnosis I got on the road to recovery. This was in the year 2001, a couple of years after I’d been knocked down by something mysterious, an illness that showed up on exactly zero medical tests. It would still be many years before my Lyme diagnosis in 2007. So the adrenal diagnosis was all I had for the interim. It was the first scrap of evidence that it was not all in my head, as so many doctors had been telling me. It was a small clue, but an important one.

The adrenal glands are glands located on top of the kidneys. They are, as a doctor once told me, the spark plugs of your body. They produce cortisone and cortisol, which are crucial biochemicals in the endocrine system.

Over the years, I've tried many things to support my adrenal glands, hydrocortisone, the pharmaceutical usually prescribed for adrenal insufficiency. (Prescribed an endocrinologist, in my case.)

The prescription hydrocortisone did very little for me. Likewise, other natural supplements touted to help the adrenals did not help me. Again, this is my individual, personal experience. I have no preference or belief about natural vs. allopathic medicine. I only care about what works. This type of naturopathic adrenal cortex was a game changer. It has made all the difference in my life.

It was the difference between being able to get up and walk, or not. When I started on adrenal cortex, it was many years after the diagnosis of low adrenal function. By then I was seeing a doctor who had figured out my blood was too thick and put me on blood thinners, which allowed me to be a little more active, enough to be able to walk about three blocks. That seemed like a giant break-through, but it was still impossible to build up my strength beyond that. At that time I was on hydrocortisone.

Once I stopped the hydrocortisone and switched to adrenal cortex, in a matter of days I was able walk eight blocks and build from that, walking further and more quickly as the months went by.

I made the shift to adrenal cortex in 2007, not long before I started my antibiotics for Lyme. It was in combination with the antibiotics, blood thinners, and quite a few other supplements, that I got my physical strength back. Like I said, things are complex.

This supplement is not vegan, or even vegetarian. Thorne Adrenal Cortex is taken from bovine adrenal glands.

I guess this makes me part cow.

Adrenal cortex a medicine. Yes, you can buy it over the counter, but I repeat, it is a medicine. It treats a real medical condition. Your endocrine system is a complicated and delicately balanced network! Meaning, don’t do this on your own at home, kids!

A doctor can run a test for adrenal function if you are experiencing severe fatigue. Please, go to a doctor for help with this. It is A-Okay to be a pro-active patient who brings suggestions to your doctor, especially suggestions from other patients who are posting about them because they work. Be polite, be concise, but ask. A good doctor will be open to your suggestions.

An Additional Note on Fatigue: 

I get very frustrated with the word fatigue. For me, fatigue meant feeling all day long like my body was made out of some impossibly heavy substance, along the lines of concrete mixed with lead, making it all but impossible to stand up or move around. 

Walking to the end of the block and back (which I stubbornly did from time to time) left me aching all over and unable to function for days and days.

If this sounds like what you’re going through, and you’ve been told you have Chronic Fatigue Syndrome, please consider that CFS is not a very useful diagnosis, or truly a diagnosis at all. Consider that you might have Lyme or another infectious disease, even if you've had a test for Lyme. The standard test for Lyme most internists will give you is wildly inaccurate. Check with an LLMD.

Have hope. I am now running five miles a few times a week, and (as readers of the blog know) spending a lot of time dancing. And getting around Seattle by bike. Things get better if you stick with your medication.

MORE COMING SOON

In my last blog posts, in December, I promised an update on the blog's favorite heroine, the Chronic Princess. Unfortunately, that post isn't here yet...but in the meantime, who doesn't love a good podcast? I have recently become a big fan of Reply All. Sruthi Pinnamaneni is an excellent reporter, and she'd done some very good posts on illness and medicine. Below are links to episodes that feature her stories. What stood out for me in first one (Second Language) is the journey of acceptance. The second one  (Boy Wonder) has quite a few parallels for Lyme patients who have suffered through mis-diagnosis and late-diagnosis. At the end, a Yale doctor, Lisa Sanders, speaks intelligently and unconventionally about the difficulties of diagnosis. Thank you, Dr. Sanders, for speaking to us all like we're adults!

https://gimletmedia.com/episode/88-second-language/

https://gimletmedia.com/episode/75-boy-wonder/

CHRONIC FATIGUE SYNDROME and LYME DISEASE

From 1999 to 2007 doctors told me I had Chronic Fatigue Syndrome, or that I had food allergies, or that I had a psychological problem.

My family doctor ran a test for Lyme disease that came back negative. I didn't know that test was wildly inaccurate. She didn't either. She implied I'd made my illness up, and told me if I exercised a little more every day I would get better. That bad advice haunted me for years.

I'd been a cross country runner and a rugby player. But now every time I tried to walk a few blocks, I ended up in bed for days.

"A sick girl" by Mikhail Nesterov 1928

In 2007, a doctor who was knowledgeable about Lyme testing and Lyme disease diagnosed me with the illness. Once I started antibiotic treatment, everything changed.

HOPE OF RECOVERY

In the last couple months I have spoken with three women who have just been diagnosed with Lyme Disease. Only one clearly recognized that this was a good thing. Her symptoms have been relatively mild (she is still able to work) but she has seen enough of Lyme in others to know getting diagnosed before her health has completely deteriorated is a blessing. Realizing she’s dodged a bullet, she is charging ahead with her treatment.

The other two, who have been sick for many years, greeted the news with more pessimism, skepticism, and even panic. This is understandable—Lyme is a difficult diagnosis to accept.

Diagnosis is the first step to recovery, and for people who have been in pain for years it should be welcome news. We all know, however, that it’s not that easy. With treatment so long, difficult and expensive, it is easy to feel discouraged before even beginning the recovery process.

For all these women, I wished I were a better example of unequivocal success—but I’m not there yet. After a year and a half of antibiotics, I am much, much better. There is no question for me that I made the right decision when I started the pharmaceuticals: it has changed and will continue to change my life. On the other hand, I am still sick, still injecting myself daily with heparin and penicillin, far from gainfully employed, and going through one particularly frustrating setback at the moment. So I can't just say, yes dedicate the next three years of your life to taking antibiotics—you’ll love it!!!

But here is someone who perhaps can. As of today, I am adding Lymie Lisa to my links page. She has recovered completely—or infinitesimally close to completely—from Lyme. She has a full time job. She travels, she acts in plays, cooks, baby-sits, decorates her house, takes beautiful photographs—in short, leads a full, busy life that anyone who hadn't been ill might lead.

I have linked to her posts about Lyme. You might want to scroll down to the very bottom, to her earliest post, as it is very encouraging. You might also want to read the other posts about her current, very creative, healthy life.

DIAGNOSIS, CONTINUED

Continued from the previous post

It is strange that out of the whole complexity of Dr. X’s diagnosis, the part I chose to dismiss was the very crux of my illness. Perhaps at a subconscious level I was protecting myself from the truth, because I certainly wasn’t ready to treat the Lyme with antibiotics. When standing up is difficult, it’s not the best time to bombard your body with killer pharmaceuticals.

As long as I was getting better, I had no reason to think any more about Lyme than necessary. My current treatment was working. I wasn’t all the way there yet, but progress would continue. Full health was just around the corner.

Ten months after I started heparin, full health was still around the corner. I had left Dr. X, and Carolyn Humphreys, my naturopath, sent me to see Dr. Martin Ross.

Dr. Ross gave me the gift I no longer knew I needed: a diagnosis.

If I’m going to continue with the parable of the blind men and the elephants, then Dr. Ross was—to put it plainly—not blind. He knew about elephants, and so could recognize the parts as pieces of the whole. Fatigue, insomnia, low adrenal function, compromised immune system, chemical sensitivity: it was all part of Lyme disease. The illness attacks every system in the body, and my symptoms, it turned out, where not a diverse array of “getting run down.” They were Lyme disease.

“The treatment,” Dr. Ross told me more than once, “takes two to three years.”

I called the Poet as I left my appointment, and ended up meeting him at the organic co-op across the street from his office. We walked through the aisles and then up and down on the sidewalk outside as I told him what Dr. Ross had said.

“Two years?” he asked.

“Or three, probably three since I’ve been sick for so long.”

We were both trying to get our heads around it. For the past year, my recovery was always a few good months away. Now that hope was gone.

Writing this a year and a half later, I can say that Dr. Ross’s diagnosis was the best thing that has happened to me in the past ten years. But at the time it felt like we were being robbed of a dream that had been almost within our reach.

Having the poet beside me was a comfort. We paced the sidewalk, talking about the treatment options Dr. Ross had described. Soon he turned to me: “I have to go back to work, sweetie, but this is a good thing. I think so.”

Gradually over the rest of the afternoon, it sunk in. I had Lyme disease. My complete recovery had never been just around the corner, even if Dr. X had told me that heparin and supplements were all I needed and that the end was in sight.

It explained so many things: the crippling illness, for starters, and why I had made so little progress after the initial change when I went on heparin. What was more, it felt good to know exactly what I was fighting.

Since 1999 my body had been a dark mystery. Even as I’d made progress with Dr. X, the illness had been framed as problems with my body: my adrenals, my immune system, my digestive system, all had strangely ceased to function as they should. And when I say my body, how can I separate that from myself? My existence had been weakness and suffering; it had felt alien and yet was inseparable from who I had become. Being able, for the first time, to picture the malevolent bacteria that had colonized my body changed that. The Lyme was the Lyme and my body was my body. They were occupying the same space, but were, at last, two separate entities.

Dr. Ross had told me that 90 percent of Lyme patients get better with the right treatment. As the Poet had told me outside the co-op: “of course you’re in that 90 percent. I don’t know anyone better at staying organized and taking all your medicine at the right time.”

I looked over the lab write-ups Dr. Ross had given me, and the prescription for an anti-fungal medicine, to start now, before I started Lyme medications. I also needed to make an appointment with Dr. Tara Nelson, who herself had recovered from Lyme, so I could get her advice about what course of treatment I should chose.

Keeping on top of doctors’ appointments and labs and medication for this illness is time consuming. I had long ago learned not to get discouraged by thinking of it all as a just job—a job I didn’t apply for, but was handed to me nonetheless. It was time to start taking care of business.

DIAGNOSIS

For five years I longed for nothing more than I longed for a diagnosis. To be cripplingly sick and not know what is wrong with you is terrible. First of all, there is no means of getting better. Second, there is no simple way to tell others what is wrong with you.

The first, it goes without saying, was bad, but the second could at times feel worse. Without a specific name for my illness people tended to doubt I was sick at all.

It’s one thing to have to stop working, stop writing, ache all over and be so exhausted it was often practical to crawl to the bathroom instead of walking. It was even worse to have my father not understand I was really sick, to have my boyfriend wonder out loud if my problems were psychological, and have one of my oldest friends call me up to tell me my real problem was depression.

If I had to be incurably ill, couldn’t the universe at least give me the dignity of a name that would make people believe it?

Not having a diagnosis did not mean I stood in front of a group of doctors wearing white coats and scratching their heads as they told me “we’re sorry, we just don’t know what’s wrong with you.” Instead I heard explanations as varied as cytomegalovirus, food allergies, weak adrenal glands, chemical poisoning, mycoplasma and the fabulous catch-all, chronic fatigue syndrome.

Looking back, this was like the parable of the blind men touching the elephant. Each explanation was blind contact with a part of the elephant. No one saw the entire beast, which was, of course, Lyme disease.

With each new explanation I believed I had found the answer, and would be better soon. I learned, however, that the proof of a diagnosis is in the treatment that follows. I could believe all I wanted that food allergies were the root of my problems, but when treating them didn’t make the fatigue go away, and when the food allergies themselves came back soon after the treatment, I lost faith in that explanation.

Over five years I went through as string of such disappointments. Meanwhile my health slowly grew worse, I could walk shorter and shorter distances and went through greater downturns as treatments backfired.

In the end, we adjust our psyches to our realities. I grew to mistrust the seductive explanations about what was wrong with me. I would only believe the doctor who actually made me better. When I finally made it to Dr. X, I didn’t care too much about her diagnosis. I cared whether she could cure me.

Dr. X’s diagnosis was more like a list than a single diagnosis. It included most everything I’d heard before, and some I hadn’t. Lyme disease was thrown in there, but it was just one in a jumble of ailments, so I didn’t pay it too much attention.

For two years, I undertook a dizzying amount of treatment: orthodics, reiki, vitamins, supplements, lymph drainage massage, far infra red sauna and cranial sacral therapy. When I got the orthodics, my legs stopped aching when I stood up. When I started taking amino acid powder, I began to sleep better. When took medicine to kill off the colony of round worms in my intestines, my energy climbed another notch. Once I began heparin injections, I could walk again. The distances were still limited, but I no longer had to drive one block to the grocery store.

Meanwhile, I latched onto Lyme disease as the most succinct, recognizable label for my illness. I told everyone I met that I had Lyme disease. It was a relief to have people nod in instant understanding: I was truly sick, not crazy or lazy.

But in my heart I found the other explanations more credible. I had first gotten sick in Mexico, starting with a urinary tract infection that led to an endless array of antibiotics as the infection resisted the medicine. Meanwhile, I had picked up and treated one parasite after another. The low adrenal function explained my exhaustion, as for the food allergies and the sensitivity to chemicals, I could tell for myself I had those things.

I knew, vaguely, that treating Lyme disease involved massive doses of antibiotics. I had a huge fear of antibiotics since the antibiotics I had taken for a urinary tract infection in 1998 had set off all my health problems. I certainly didn’t want to take any more. Besides, that tick bite happened a full year after my health started to deteriorate, so I just saw it as the smallest, least important part of the whole picture.

(If this all sounds confusing, it is. To this day, I don’t fully understand the biological chain of events that got me where I am.)

To be continued...