At long last. Rather than trying to write you a post, I have copied a letter that I’m sending out to interested IRL friends. As you’ll see, I have no idea whether this is legit, nor where it will lead, but here we go:
Dear Friends,
I’m sending this out to all those who’ve been aware of my health struggles over the past couple of years. It appears there may be a diagnosis, and the beginning of a long road of treatment. It is all tentative, and controversial. I am normally a very private person, but I wanted to share this information because it may be of help to someone else. As I have learned, much to my sad surprise, there are many, many people who are suffering with strange symptoms that go undiagnosed and untreated. I feel certain that someone reading this will know of someone who may benefit from what I’ve learned.
Let me also say that I am not sending this out as some medical activist or advocate. I have no way of knowing, at this point, whether the information I will share at the end of this letter is accurate, or whether it is a product of medical charlatans. I simply don’t know. This is just my story. If it can be of some help to someone else, that is a very good thing.
A brief recap of my symptoms over the past 2+ years: first, beginning in
October, 2005, kidney stones. I cannot say whether they were related to my current illness, but I do know that since the treatment for them, in March of 2006, I have not been well.
Initially, I had a low-grade fever for over 6 months. Gastrointestinal
symptoms; rapid weight loss, accompanied by bloating; difficulty swallowing, then difficulty speaking. I felt that I was choking all the time, a feeling that I still have. I was lethargic for weeks, and could not wake up after sleeping. I felt as though I were heavily drugged, although I was taking no medications at all.
Next came neuromuscular symptoms. In the summer of 2006, I began noticing that my hands would “freeze” into claws if they’d been in a certain position for even a few seconds — grasping the steering wheel, carrying a purse (this is one symptom that has entirely resolved; it happens very rarely if ever, now).
Then, while taking Lily and a friend out to lunch after vacation bible school, I became stuck on the sidewalk. Couldn’t move my legs. When I was able to move, after several seconds, I couldn’t raise my arms to open the door. Terrifying. Following this episode, I’ve had muscle weakness in arms, legs, throat, tongue and neck, that continues through today. The weakness ranges from a tired feeling, to the inability to carry a dinner plate to set the table, to having to put the car in “park” at a redlight because my leg is too weak to keep the brake pressed down for the duration of the light.
I went through several months of stumbling and fell down a number of times. Thankfully, although some level of weakness is present daily, I haven’t had a bad fall for nearly a year, now.
Throughout the late summer, early autumn of 2006, my hair began falling out. On my pillow, in the shower, left on any upholstered chair I’d sit in, all over my clothing. My hairdresser of 20 years, who knew I hadn’t been well, told me later that she assumed from my appearance that I’d been undergoing chemotherapy, due to the thinning of my hair, followed by the fuzzy new growth.
Also during this time, my ribs became terribly painful. So much so that I couldn’t sit in a hard chair, or a church pew. I’d wake up with a yelp at night, from having rolled over and been hurt by the pressure of the mattress or my own arm. This symptom comes and goes, to this day.
In January of 2007, the twitching began. This, too, persists through today. Sometimes it’s minor, like most people experience from time to time — an eye twitch, a thumb twitch. More often, though, it’s almost violent — I can watch muscles — biceps, forearms, thighs — jumping for minutes at a time; it’s sometimes painful and always tiring.
Just after the twitching came the pain. It started in my arms. I don’t even know if it’s considered muscle pain, nerve pain, or what — it feels like my bones hurt. I can’t count the times that John and Lily have microwaved a heating pad for me to wrap around my arms while I sit and cry. The pain was confined to my arms for a long time, but now I think of it as my entire skeleton hurting. Mornings and late at night, my spine and hips are very painful. I have never been much of a sleeper, but now I am awake sometimes for three and four days at a stretch, not always from pain, sometimes just from unexplained insomnia.
I’ve had periods of confusion, the inability to recognize my own street, loss of vocabulary. Just after Easter of this year, I developed tinnitus. Sometimes the ringing in my ears is simply background noise that I have gotten somewhat used to; and sometimes it is so loud I cannot hear the television or participate in a conversation.
At last count, I had seen over 20 doctors. I lost count of the tests and various procedures I’ve had. The only things that showed up irregular in all the testing were a couple of nutritional deficits, and nothing that would account for these symptoms. There were speculations of MS, ALS, many neurological disorders, viruses, autoimmune disorders — nothing seemed to fit entirely.
I was tested at least three times for Lyme Disease. Tests were always negative. I have no knowledge of having been bitten by a tick, never had a bullseye rash, none of those things that one associates with Lyme Disease. Over the past two years, I’ve been offered enough drugs to open a pharmacy, by people who (like most doctors, it seems) were willing to medicate my various symptoms with no understanding of their source. I’ve been offered botox injections in my throat, and a procedure to stretch my esophagus, in an effort to ease the choking — again, with no diagnosis. I declined all of these treatments, because I remained convinced that someone, somewhere, would know what was wrong with me, and I feared that medicating specific, isolated symptoms would make diagnosis even more difficult. I did receive acupuncture treatments for about 8 months. They did no harm, and sometimes offered temporary relief of stress, if nothing else. But I was not getting better.
Finally, several months ago, I gave up. I was tired of telling my story to new doctors. I knew that literally hundreds of people were praying for me, and that would have to be enough. I figured I’d either just get better, or I’d get much worse so that someone would finally recognize what I had, or I’d stay the same and learn to live with it one day at a time, as I have been doing.
Then, in the spring of this year, I started getting emailed newspaper articles from people who knew of my story. One person was even kind enough to scan entire chapters of the novelist Amy Tan’s book, in which she recounted her 7-year struggle with an illness that sounded very much like mine. Someone John knows sent him a link to information about a film that I will give you here. All of these articles, books and film are about Lyme Disease. The illness that some docs had suspected, but for which I’d consistently tested negative. I learned from the new information being sent to me that there is a small, but growing medical community (called “lyme-literate” docs) who believe that the standardly administered tests are unreliable, and that the diagnostic guidelines established by the Infectious Diseases Society of America (IDSA) are inaccurate and inadequate. They also believe that many, if not most people who have Lyme Disease never experience the bullseye rash, and have no knowledge of having been bitten by a tick.
All of this time, I had dismissed the possibility of Lyme Disease, because of the negative tests. No one told me they weren’t reliable. With this new information, I found a local doctor who is lyme-literate, and went to her. Because she practices outside the scope of accepted standards, she does not accept insurance (or perhaps more accurately, they do not accept her). And she sent my blood to a lab in California that is not covered by my insurance.
Yesterday I went to her for results. Most tests came back negative. One, for the presence of protein that would indicate Lyme infection, came back positive — by the standards of the International Lyme and Associated Diseases Society — the folks who call themselves “lyme-literate.” By the standards of the IDSA and the CDC, my results are negative, falling short of their diagnostic criteria. The doctor said she is absolutely certain that I have Lyme Disease.
I do not know. But I have decided, with some apprehension, to begin the course of treatment that she recommends. For now, it is massive doses of various antibiotics, plus supplements to help counteract the negative effects of the antibiotics. For now, the treatment is oral, although she has advised me that daily IV antibiotics are not uncommon during the course of this type of treatment regimen. More antibiotics will be added over the course of several months or (God forbid) years. She says to expect at least 8 months of treatment. No traditional practitioner would approve 8 months of heavy-duty antibiotics, for a diagnosis that can’t even be confirmed, as far as the mainstream medical community is concerned. It’s very confusing and confounding to me. I am not one to take unnecessary medications, or any kind of medications, if I can avoid it. But I’ve lost a lot of time, and a lot of my life. I’ve missed activities with Lily, time with John, vacations, important family events, good times with people I love. I’ve had to close a private practice it took me years to build. I feel it’s time to take this risk.
I won’t go into all the reasons that it’s a bad idea to take antibiotics you don’t really need. The short version is, I’m likely to become more ill, in some respects (last night, the nausea was horrendous from my first dose), and the risk of becoming immune to a number of very valuable antibiotics that I may need in the future — particularly if it turns out that I actually do have one of the neuromuscular diseases that has been speculated. I have always been prone to pneumonia, and there are hundreds of documented cases of people who were treated by lyme-literate docs, who did not recover from their illness, and later died from pneumonia because the antibiotics that should have cured them had been overused. All that to say, this is not an easy decision, nor one that I make lightly.
If you have been praying for me, I thank you from the bottom of my heart, and ask that you will continue just a bit longer. Pray that John and I make wise decisions and get good counsel, and that I get my health back. As most of you know, this time has been very tough on John and Lily. In many important ways, they’ve been living with an entirely different person than the one they knew up until two years ago.
If I haven’t already overloaded you with information, here is a link to a YouTube clip about a film recently produced by Lyme Disease activists. I saw myself in many of the stories in that film:
Lyme Disease movie YouTube clip
And here is a link to the website of the film, where there are links to much more information:
Under Our Skin
Oh, one more curious bit of information. As many of you know, I searched for a year or more to find some link between my progressing illness and the lithotripsy treatment for kidney stones. I could not escape the belief that I was fine (except for the stones) before that, and sick as hell after that. My doctor says that in her experience it is very typical to see someone who has carried Lyme Disease for years, but only manifested symptoms after the body experienced some sort of traumatic event. She said it is often a minor car accident — she cited someone who was rear-ended in an accident that caused $300 worth of damage, as an example of how minor it could be. She believes that the lithotripsy may well have been that kind of trauma for me, that weakened my immune system and triggered the dormant Lyme Disease to overtake it. Is this medically, scientifically sound? I have no idea. I do know that before the lithotripsy, I was well, and since then, I have not been.
If you know and love someone who has persistent, unexplained symptoms — and they could be in absolutely ANY system — digestive, neurological, endocrine, rheumatological, ANYTHING — it may be worth getting tested for Lyme Disease. Short of going to a lyme-literate doctor, people should ask their family docs for the Western Blot test — it is covered by insurance, done by standard labs, and (I’m told) more accurate than the tests that are usually ordered to rule out Lyme Disease.
Thank you for “listening” here and for your prayers. You’ll never know how much they’re appreciated. I absolutely do believe they are working — not on my timetable, or in my ways, but then . . . Isaiah 55:8-9.
Love,
Susan (Susie, Sue, depending upon who I am to you!)
P.S. This just in! The IDSA is apparently willing to take another look. Those of you who are docs or know someone who is and might be interested in this topic, please pass this on:
a call for doctors to be on a Lyme Disease guideline review board
So there you have it. When I write my book about WTF Disease, I will dedicate it to you, Ratsasstafarians. I wish I could remember all those of you who’ve suggested Lyme Disease. And when you did, especially early on, I thanked you and told you I’d been tested and that wasn’t it. I know there was John, and Karen and I certainly know Amy, whose sending me that Amy Tan excerpt (in which I felt I was reading about myself) gave me the energy to try one more damn thing.
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