Once More Unto the Breach, Dear Friends

Although I’m not King Henry and I’m not battling the French, I am in need of a speech of valor.

I landed in the ER this past Saturday, and was kept overnight until I could prove I could keep down semi-solid food. Ready for this? It was exactly a year — to the day — since I first had these symptoms (severe gut pain and nausea, leaving me doubled over and barfing up everything I’ve eaten during the past month, or so it seemed).

In 2008, these symptoms culminated in five trips to the ER, two surgeries, a ten-day hospital stay, loads of unpleasant tests, including two colonoscopies within five days. Even so, I was left with inconclusive results and the likelihood that my symptoms would return. Possibly in the form of another gut obstruction.

Once more, this past Saturday, all tests seemed inconclusive and every doc I talked to told me a different story. But this time I’m dealing with the U of M hospital, which is at least a research hospital. Perhaps these docs will actually try to find out what is CAUSING my symptoms. Not that I’m going to hold my breath. I see one specialist in two weeks. The other appointment hasn’t been set up yet. I’m supposed to call the hospital if I don’t hear from them in seven days.  Unless I land back in the ER.

I’ll keep you posted. Once more.



It’s been a while since I’ve posted, mostly because I had a terrible summer of mostly feeling bad. Same with fall, although there were a few good days (or sometimes hours) where some of you actually saw me!

Since I last wrote, I’ve received these diagnoses via lab tests from my new doc:

  • Late neurological Lyme disease
  • Bartonella infection
  • Chronic Human herpes virus 6 and Epstein-Barr virus infection
  • Autoimmune reaction to wheat and dairy
  • Sensitive to eggs, almonds, peanuts, soy, and pineapple
  • Nutritional deficiencies
  • Hormone imbalance
  • Irritable bowel
  • Irritable bladder
  • Neuropathic, muscle, and joint pain

The good news is that I have been able to stay on treatment for the past six weeks (yay – a first). It involves thirty+ supplements and drugs that I must take every day (including B-12 injections). And I am adding many other detox items to my protocol, including an infrared sauna, which we are expecting to get delivered this week.

The bad news is that I’ve been doing relatively little writing and art. I’ve had to put nearly all of my creative energy into my healing protocol and cooking (since I really can’t eat much off the shelf any more – soy, wheat, dairy and eggs are in everything!).

But I’m moving forward, thanks to my lovely partner-husband, fantastic friends, and a wonderful writing group and writing coach. I am also working with one of my favorite energy healers again, and am signed up to take some weaving and fiber-art related classes this fall.

I’ll try to be better about posting regularly. Thanks for checking in, and don’t forget to let me know you were here by leaving a comment. It’s terribly isolating to be ill for so long, and I love to know when you’ve visited me.

Cheers, and hope to chat soon!


When Did I Get Infected?

My friend, Sally, asked me this recently, wondering if Lyme wasn’t a mostly East Coast disease. I thought I’d give the long version response here, so I could give her a shorter answer by email. (And thanks for the good question, Sally!)

My docs and I have traced my Lyme symptoms back to my childhood. It’s likely that I was first infected sometime after my family moved to Minnesota when I was ten, and then reinfected during one or more family vacations in Washington State (my test results indicate at least one strain associated with that area).

I was probably reinfected again in NH (I had lots of rashes, bouts of flu, and memory problems in my early thirties), and probably experienced one more reinfection when I lived in southern MN in my late thirties. This is the one I think broke my immune system’s back, so to speak, and probably happened just before my “carpal tunnel” symptoms started, which I now know is a common symptom of Lyme Disease. I’ve learned that this pattern of infection and reinfection is very common.

As you may know from my past posts, neuroborreliosis (a better name than Lyme Disease, since there are many more strains than the one associated with Lyme, PA) is epidemic. It’s reported in the US at a higher rate than AIDS and HIV, and is found in every state in the US and every continent of the world. The CDC does not require reporting, neither do most states, so the best numbers available are underreported by at least a factor of ten (according to the CDC) or as high as a factor of fifty (estimated by prominent researchers).

Some Lyme Literate docs and researchers believe that most people in the US already carry the borreliosis bacteria. My doc believes that many common minor symptoms that go unreported or self treated (like headaches, memory problems and aches and pains we commonly associate with aging, PMS, thyroid and other hormone imbalances, asthma, allergies, back, neck, or joint problems, etc) may be caused by borrelliosis, possibly in combination with other bacteria.

Lyme/borreliosis is called the “Great Imitator” because it can mimic almost any disease. Most people diagnosed with Chronic Fatigue, Fibromyalgia, and Rheumatoid Arthritis either test positive for and/or respond positively to treatment for neuroborreliosis. There is also recent research that points to neuroborreliosis as a possible cause of Alzheimer’s Disease, MS, and ALS.

My doc’s theory (shared by many researchers) is that those of us who experience extreme symptoms are infected with more than one strain of neuroborreliosis bacteria, probably other types of bacteria (he calls it a “bacteria soup”), and probably have experienced factors that caused our immune systems to start losing the battle against this “bacteria soup.”

Recently, I’ve started to feel that our current medical and social understanding of neuroborreliosis is comparable to how we understood AIDS and HIV in the 1970s and early 80s. In twenty or thirty years, I bet we’re gonna look back on this time as the dark ages for Lyme Disease.

Hopefully, by then there will be better medical technologies for prevention, diagnosis, and treatment of Lyme, just as there are now for AIDS and HIV. Believe it or not, this comparison is one of the few things that cheers me up these days, especially since the outcome for someone who has been infected as long as I have is grim.

That said, I started treatment for Bartinella yesterday with a great deal of hope. I have a lot of sudden burning muscle pain, am very exhausted, brain-fogged, emotionally-rollercoastery, and I’ve had a few bouts of dizziness.

But on and forward, I say! Think good thoughts, keep in touch, and I’ll keep you posted.

Long Post – Catching Up!

It’s been a while since I posted – sorry for those of you who like to hear what’s going on more often.

Since I last posted, I had a few good days where I spent all my energy on doing chores and fun stuff, like setting up my studio for silk painting, going to a wool festival and spinning for two days, and getting a new sewing machine and starting to make some summer clothes for Jay. Very fun stuff for me.

But most of the past six weeks I’ve been dealing with pain, fatigue, memory loss, and cognitive dysfunction (a fancy way of saying that I can’t read, write, or take in new information well). And did I mention pain? I took Levaquin for a month for Bartinella, which made the pain and fatigue worse than usual. There were several days when I had to take pain killers, which I don’t like to do.

And I switched to a new Lyme Literate Medical Doctor (LLMD). My doc in San Francisco, while very good, had to switch an appointment date. I was lucky I hadn’t already bought a plane ticket. Also, it was very difficult to get questions answered or even to get copies of my records from that office. They are understaffed, I think.

So last week Jay and I drove to Missouri to see a very well respected LLMD, who I liked very much. I was going to drive the ten hours by myself, but thank goodness Jay’s schedule loosened up and allowed him to come. I caught a terrible cold and sore throat the day before we left. If it had been me driving alone, I might have needed three days to get there. But we managed to have a fun, beautiful drive there and back.

The new doc took a very complete history (made easier from the thirty pages of forms I filled out in advance), and did a physical exam. I failed an eye test, which confirms neurological impairment from the borelliosis. His treatment is completely patient-driven. He gave us a huge stack of handouts with instructions and information to help me take control of treating my neuroborelliosis. I’m glad I have so much written material because it’s hard to take in new information. I have to read instructions over and over.

Better still, he has a staff of nine, which means I can get fast answers to any question that comes up. And I got a copy of my records before we left the office. They are very efficient, and set up to help sick people who don’t have energy to hound their doctors for answers or paperwork.

The upshot is that I’m finally treating the H. Pylori with a group of drugs put together for that purpose (called a Prevpack). I’m starting a detox protocol and an anti-yeast protocol. Next week I’ll begin a new treatment for the Bartonella, and also look at starting an anti-pain diet.

This is a full time job.

So finally, even though I still have a cold, I’m in a pretty good place. The weather is beautiful, spring has sprung, and when I’m well enough, I have plenty of creative and useful things to do that help me feel like I’m contributing.

Keep in touch – I love to hear from you all!

The Opposite of Fate

I’ve had a miserable two months. My usual symptoms have gotten worse, and I’ve been hit up with new symptoms that have my head spinning, including shortness of breath, racing irregular heart beat, body-wide hives and insane itching everywhere, including places that just shouldn’t itch (hands, bottoms of my feet, inside my ears, etc.).

After reading Amy Tan’s essay called “The Opposite of Fate” in her book of the same name in mid-December, I am now suspicious that my diagnosis of Fibromyalgia/Chronic Fatigue Syndrome may be wrong.I’m going to a specialist in chronic Lyme Disease at the beginning of February, and once again find myself in the very weird position of hoping to be diagnosed with an awful disease.

If it is Lyme, there is the potential for treatment and improvement, which is very exciting. If it is Lyme, I’m guessing that I’ve had it for twelve years or more. That will make it difficult to eradicate, but I’d be happy just to have some energy and even part of my creative brain back.

In the meantime I whine only occasionally, I appreciate the generous and kind partnership of my husband, and I try to write, spin, knit and read when energy and opportunity are present. And nap. It turns out my cat is right: One can never have enough naps!

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