May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
Collect the complete set of diaries at LymeDiseaseAwareness
The stories in today's diary have been collected by MsGrin but were written by each of the Users identified.
Lyme disease is purported to be 'hard to catch and easy to cure.' That's not the experience for tens of thousands of Americans with a bizarre array of symptoms who have spent years trying to figure out what's wrong with us. Many of us stay quiet because we've been told so often that our illness is all in our heads. Because we're stigmatized as crazy, doctors refuse to treat us and insurance companies refuse to pay for what we need.
According to CDC estimates, there may be upwards of 200,000 new infections of Lyme disease annually in the United States with only 10% of them being confirmed by an admittedly flawed two-part testing process.
The following video is 50 seconds long*:
The following stories are those of Lyme diagnosis we have smoked out in our own Daily Kos community. Please note that several others declined to tell their stories here even with the anonymity provided by a UID:
keeplaughing
I've been chronically ill for about two decades. Mostly PAIN. Huge pain, everywhere. I'd been diagnosed with all sorts of things, the last one, fibromyalgia. Of course, that's really just a way of saying "we know you hurt, we know you have high inflammation markers, we know something is wrong, but we just don't know what it is."
I've had periods where I thought I was cured, usually when I was so damned clean and saintly in my diet that there was absolutely no fun in eating at all. And then suddenly for no apparent reason, I'm flattened with it again.
Finally, on Monday, after lots of lab tests that took some time, it was confirmed that I have chronic lyme disease, along with 15 of the co-infections that go with it (I think there are about two dozen or so.) One of these buggers gets into your macrophage cells - yes, those important immunity warriors - and kills them and then takes them over, in a sense using them as little Trojan horses to move around your body and get welcomed in where they're really not welcome. Talk about sneaky.
The truth is, I've always known that it was a bacterial infection of some kind, because I've always felt so much better when on antibiotics for sinus infections or whatever. Of course, doctors thought I was nuts.
I'm not sure if this diagnosis is good news or bad news. My Dr. seems to think it's bad news, and wants me to find what he calls a "lyme-literate" medical doctor. Apparently he is not one, he's an orthopedic surgeon now. (He keeps a few of his old PCP patients around.)
I'm not sure where I'll go from here, and I'm not posting this to ask for suggestions. I'm posting only to add to the diarist's premise - that it's important to get this nastly little bugger before it sets up house and kills you. Literally. People get crippled and die from this.
Archer070
When my son was 12 years old, he abruptly came down with a Bell's Palsy that terrified us. We took him out of summer camp and to our pediatrician. The pediatrician pronounced it a passing matter not in need of any treatment. He predicted it would go away on its own, and it did, within about two weeks, to our infinite relief.
Meanwhile I had been doing my own research. I discovered that Bell's Palsy was associated with Lyme and asked that my son be tested. The pediatrician refused. I insisted.
"I'm the doctor," he said. "Don't tell the doctor what to do."
"Okay," I said, "But I'm the lawyer, so don't tell me what to do."
He agreed to the test, which came back with a high-positive reading for Lyme. The sound of amazement in the doctor's voice was memorable. We discharged him and got another pediatrician, who said it was very early in the game (I can't quite recall how he knew that) and said:
"We do not fuck around with Lyme in my office. We clobber it."
He prescribed medications that struck me as the the antibiotic equivalent of thermonuclear war.
My son tolerated the treatment well and never had another symptom, and has tested negative ever since. He graduates from college on Monday.
Dr. Never-Tell-Me-What-To-Do retired rich and honored by the community, but whenever our paths happen to cross he looks the other way.
He shouldn't.
There never was a medical malpractice case I was more overjoyed to never have to file.
sillia
Compared to some people, my diagnosis was relatively fast but the two
and a half years when I was ill and didn't know what was wrong seemed
like forever to me. The complete list of my symptoms is two pages long,
single-spaced. Mainly I've had severe fatigue, cognitive problems and
weird episodes of joint and muscle pain. For a long time, my functioning
has been maybe 30%, or 50% on a really good day.
My doctor could find nothing wrong with me at all, zillions of tests.
They also tested me twice for Lyme (with the ELISA screening test); both
were negative. It wasn't until I read in a Kos diary about the Western
blot testing that I even knew there was another way to check for Lyme,
or that it hadn't truly been ruled out in my case. I demanded this test,
my doctor reluctantly ordered it from a standard (CDC) lab, it was
negative. I demanded another one, it was negative too. More internet
research...aha--a lab called Igenex specializes in Lyme and does more
complete tests. I ordered this and FINALLY found some evidence that I
might be infected. What a relief to know.
More internet study and advice from some Kossacks and I finally landed
an appointment with a good Lyme doctor. Guess what? ALL my symptoms, all
two pages of them, are "typical" of Lyme disease. I am pretty angry that
they couldn't diagnose me earlier, if it's that obvious. Now after six
weeks of treatment I am already starting to feel like myself again. Last
week to my surprise I began work on a project I'd abandoned years ago,
so it seems like my brain is recovering. Though I have a long way to go,
I am optimistic.
Leema
I never saw a tick or a rash...but I have Lyme disease.
17 years ago I went on a vacation to the Pacific NW (Vancouver Island and the Olympic peninsula). On the drive home I developed an extremely stiff neck. Then came a gradual onslaught of other strange sensations that waxed and waned along with the stiff neck: some edema in my neck & upper back that would ripple the skin, bands of pain around my chest and through my chest just below the sternum, esophageal spasms/pain unrelated to food, episodes of extreme weakness/tiredness where I HAD to lie down, inability to sleep due to something that would jerk me our of slumber just as I would drift off, swelling in my central back, pains in the bottoms of my feet, crunching at the base of my skull, odd pressures in my head....burning pains and numbness in my extremities ( my R side was more affected than the L side), flulike feeling welling up inside with burning eyes. I could go on, but you get the picture: it was bizarre. At its worst I thought I was dying since these were sensations never experienced in my previous 50 yrs; other days I would feel almost normal.
I had never heard of Lyme disease despite a nursing background, and the 15+ doctors I saw in pursuit of a diagnosis were equally ignorant. Most thought LD only occurred on the East Coast and all were oblivious to its many presentations which are needed for that clinical diagnosis because current tests miss too many cases (20-60% depending upon which studies you read). When the symptoms got so bad that I could no longer work, I made out my living trust/will, bought a computer and learned to research the Internet to find my diagnosis.
The infection was 3 years into dissemination before diagnosis finally occurred, statistically limiting my chance for a cure. I was fortunate that I had a VERY positive Western Blot test. (not everyone is so lucky)
It took 2 years of fairly constant oral multiple antibiotics (plus a few other things that might have helped) to reach a point where I could return to work. (Note that probiotics are vital if one is ingesting this amount of antibiotics) Today I still have episodes where some of the old symptoms start to creep back.
Lyme disease and its cohort of possible co-infections are still in the category of "emerging" diseases. They are not well understood. They are difficult to diagnose and difficult to treat and surrounded by medical disagreement.
geomoo
My odyssey of suffering and fear began when I found a hot, painful, bright red elongated patch on my belly. It eventually grew to be 18 inches long. I thought it was a spider bite. The first doctor told me it was unlikely to be a spider bite, and considered Lyme. Then she failed to follow protocol, according to my daughter the doctor (yes, I'm bragging), by giving me an antibiotic for the cellulitis which was not also affective for Lyme. This little error may yet bring a lot of suffering to my life.
I tried to think I was improving, but over the next two weeks I got progressively worse. Luckily for me, I became quite ill--listing the symptoms doesn't begin to describe the experience: horrible headaches, muscle aches, absolutely no energy, inability to sleep, inability to concentrate, nothing to do but tick off the hours. I tried to make it through half-hour periods.
Because I was so sick, I went back to the doctor. This doctor was confused--couldn't understand how a spider bite could cause such illness. He told me to come back if it continued. Damn. As I say, luckily for me, I became so sick that I finally agreed with my wife that I should go back. I don't much like doctors, and I don't expect them to be magic. I was convinced they would have nothing to help. But I was so miserable that I went to the doctor simply to beg, to tell him that I had to find some kind of relief.
Whaddya know, this doctor took one look at my stomach, left the room for a moment, and returned with a medical text containing a photo which could have been of my stomach--almost precisely identical to my rash. He further told me that they were seeing several Lyme cases every week. Shit. This real doctor got me on the antibiotic, but he only kept me on for three weeks.
I wish I had educated myself earlier. My wife bought me Healing Lyme at the beginning. By the time I read it, the spirochetes were well-established. It was too late to combine herbal remedies and to insist on a longer course of antibiotics. I know the clever little shits are still active in my system, or at least that they were when I got myself tested last October using a naturopath and her connections with an exceptional lab. I was asymptomatic at that time except that I still haven't recovered my energy from when I was more ill.
MsGrin
I’ve had a very complex medical history, having had four heart valve replacement surgeries within five years in my 20s. I have an artificial heart valve and have had numerous issues with both hemorrhaging and clotting in spite of being extremely careful with the bloodthinners I take because of the valve and regular testing to monitor it. A handful of those events have been life-threatening and before this story begins, I nearly died twice from complications around my surgeries.
In 2004, I had a minor outpatient procedure, but unfortunately was sent home over my objections rather than observed overnight given my history with bleeding. Long story short, I had internal hemorrhaging of something like half my blood volume, going into respiratory arrest because my abdomen was so swollen from leaked blood that my diaphragm could no longer expand and contract. Trauma surgery released 3 liters of blood. I had heart attacks following this from blood volume depletion. We learned from CT imaging at that time that I seem to have a cystic progressive, kidney disease and that I have cysts in my liver, spleen, on my spine and in my sinuses.
I was too weak to stand for nearly two weeks and required time in a rehab hospital to learn to walk again. I also was debilitated with fatigue, dizziness, mental fog, confusion, and disorientation spells (seizures). Also troublesome was numbness in my hands and feet, the latter of which often made it difficult to stand and walk. I could not function. My recovery absolutely stalled out. I had horrible depression. I had fought my way back from earlier life-threatening incidents, why not this one? My doctors thought my symptoms sounded absurd and told me my issues were all in my head. At least twice I was told to see a psychiatrist. I lost my secondary disability insurance because I could not demonstrate what was wrong with me.
Long story short, there were a lot of health issues to rule out as cause of my symptoms, and it took five years and twenty-four doctors before someone recognized common signs of neurological Lyme disease and tested me for the infection. I was seropositive initially and remained so after several months on antibiotics. I changed insurance and hence pharmacies at the beginning of the year. My new pharmacy has refused to fill my order for antibiotics, overriding my doctor’s orders, because they claim to be following the IDSA guidelines. Interestingly, the guidelines say specifically that they have not done testing on patients with my kind of issues, so I would think that would indicate that the guidelines do not apply to me.
My doctor and I believe that I was likely infected with the Lyme spirochete back in 1993 but that my immune system kept the bug in check until I the trauma interrupted that process. We have guessed at that time frame because that summer I had undexplained sudden, massive hearing loss in one ear - something which has been documented as a symptom of Lyme infection.
UnaSpenser
I had been tired alot, but I thought that was to be expected, as a business owner and mother of a young child. However, by the summer of 2005, I knew something was wrong. I had purposefully structured my schedule to make sure I was getting rest for the past 6 months and still, I was profoundly tired. Moreover, I was waking to powerful burning/tingling feelings in my hands and feet and lips. My early thoughts were that I had been poisoned, as I had had similar feelings with MSG poisoning years ago. I was also experiencing cognitive changes. Where I had always been a compulsively organized person, I couldn't keep an organizational system going and my "to-do" list was falling apart. I was forgetting very important things and losing things all the time. Me. The person who had the same pair of sunglasses for 12 years. I think I'd had my keychain for about 20. Those were gone. And my constantly organized house was a mess.
I became very concerned when I started having so much pain in my feet and knees and hips that I couldn't walk. When I woke up one morning unable to see - it was as if I were looking at the world through a wall of rushing water - for a couple of hours, I knew it was time to do something. Not inclined to go to the doctor (hadn't seen one in 15 years), I went to my acupuncturist. After a couple of visits, he gave me a clear directive, "you have Lyme disease. Go to a doctor and get antibiotics." My acupuncturist who loathes antibiotics was telling me to go get them. We'd known each other for about 12 years, so I took him seriously. In August of 2005, I had an appointment at a local clinic. Here's what ensued:
*I tested negative for Lyme
*I was sent to a neurologist in Feb 2006, was hospitalized, then told it was just stress
*I went to a recommended doctor in Spring '06, who diagnosed me with "chronic heavy metal poisoning"
after 9 months of chelation, I was getting worse - more debilitating pain and weird cognitive episodes of profound confusion doing common activities, getting lost in my own neighborhood, unable to recognize friends
*In Spring of '07 a PCP told me I was a psychiatric case
*In Summer of '07, acupuncturist informed me of inaccuracy of Lyme tests
*In Aug '07, I paid $1,000 out of pocket for more tests, which came back definitively positive for Lyme
*Tired oral antibiotics for 6 months, but couldn't tolerate them.
Moved to bicillin injections in May '08. Saw some improvement
*Was retroactively denied the bicillin by my insurance company in July '09
In April of 2009 I tested positive for two auto-immune disorders - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Dysautonomia, which explained why I wasn't responding well enough to the antibiotics (tests I would not have gotten if it weren't for ellinorianne and the amazing community of dKos). I needed a much more serious treatment to get my immune system functioning, something called intravenous immunoglobulin (IvIg). IvIg costs anywhere from $4,000 to $17,000 per treatment. I needed to have it 4 times a month for at least 9 months and possibly years. This wasn't going to happen unless insurance covered it. Insurance wouldn't cover it unless I found an in-network neurologist to confirm the diagnosis and issue the orders. Given that the etiology of my diagnoses was Lyme, that proved challenging. Doctors in Massachusetts run screaming from Lyme patients. It is a particularly hostile state to docs who try to treat Lyme patients with anything more than 4 weeks of antibiotics. Though CIDP can be a stand alone diagnosis and the well-established treatment is IvIg, every doctor wanted to see my entire history and couldn't look past the Lyme Disease implications. Finally, I found one who would see me, only she had her own health problems. I was scheduled to see her in September of 09, but that was delayed until February of 2010.
Since then, a change from HMO to PPO has meant that my out-of-network neurologist is now recognized by the insurance company. I have had 4 treatments of IvIg so far. The first real ray of hope in 4.5 years. And, I'm a lucky one.
churchylafemme
I'm 37 and have been struggling with chronic illness since I was 14. I was diagnosed with fibromyalgia when I was 21, and later with chronic fatigue syndrome. When I was 26, after being in remission for several years, I suddenly got much sicker... my fibromyalgia symptoms (pain, fatigue...) came back along with new symptoms, including vertigo that was almost continuous and often terrifying (not the spinning kind, but many different sensations of motion, sometimes with visual disturbances), frequent spells of near-syncope lasting for hours, severe irritable bladder syndrome, and frequent shortness of breath.
Most doctors assumed my symptoms were "just" my fibromyalgia. They didn't seem to think there was any urgency in treating me, or in figuring out anything beyond the fibro diagnosis. I was also misdiagnosed with other conditions, including GERD, allergies, and polycystic ovarian syndrome. My primary care doctor sent me to specialist after specialist who treated me for fibromyalgia or those other conditions, or depression or anxiety, but none of those treatments helped me. I kept getting sicker, and ended up being mostly housebound for the past 10 years.
A couple doctors tested me for Lyme with the ELISA, which came back "equivocal," but left it at that. The doctor who first diagnosed me with fibromyalgia put me on doxycycline for "suspected Lyme" about 16 years ago, but took me off of it after two weeks because he mistook a Herxheimer reaction for a strange kind of allergic reaction. The herx reaction should have been another clue that I did have Lyme, but he didn't try to give me any further Lyme treatment.
There were other red flags... I lived in a very high risk area for Lyme, and spent a lot of time on Cape Cod, another high risk area. My fibromyalgia symptoms began with a flu-like illness, which is often the case with Lyme. On Lyme symptom checklists, I had most of the symptoms. And at one point (apparently I was infected with Lyme a second time), I developed a bull's-eye rash, which ILADS considers to be diagnostic of Lyme in and of itself. Yet it took about 13 years (possibly longer-- my doctor thinks I have probably had Lyme since I was 14) and seeing 35 doctors before I was diagnosed.
About four years ago, an MD specializing in fibro and CFS diagnosed me with chronic/late-stage Lyme. He diagnosed me according to ILADS' guidelines (summarized in this slide presentation), after many lengthy appointments, and many blood tests and other tests to rule out other causes. The treatments he gave me for Lyme, including long-term oral antibiotics, were the first treatments that ever helped many of my symptoms. Among other things, my vertigo went away for the first time in about six years... I had almost no vertigo for more than a year. The near-syncope episodes also went away, and have not come back. I also had much less pain. For reasons that I won't go into here, I didn't get treatment for a while, and relapsed a couple years ago... my neurological and cognitive impairments have gotten much worse.
My husband also has Lyme. We only found out that he has it because we learned that Lyme may be sexually transmissible (see Stranded Wind's diary about that issue), and our doctor agreed to test him, just in case. His Western Blot was strongly positive. He had had some symptoms for years which no-one suspected might be Lyme: migraines, carpal-tunnel-ish symptoms in his hands, tinnitus, and depression. Those symptoms have been improving with his Lyme treatments. We don't know if one of us gave Lyme to the other, or re-infected the other, or if we both got Lyme from ticks that we didn't see... like many people with Lyme, he never saw a tick or got a rash.
42
There is no dispute that Lyme Disease needs to be treated as early as possible. The NIH, CDC and various States Departments of Public Health readily promote this. Everyone admits that if that does not happen then serious complications can and do occur.
Unfortunately, that is where any agreement seems to end. The average physician, while understanding that such a scenario occurs is not comfortable or even knowledgeable as to how to recognize much less treat patients who find themselves in such an unfortunate position.
My daughter is one of these patients. Her physician originally diagnosed her expanding solid, pink rash as a spider bite. She had no other symptoms then nor for the rest of the summer. Several months after the initial rash faded the neurological symptoms started: sensitivity to light and sound, shooting nerve pains is various appendages, come-and-go stiff necks or jabbing headaches. It took a little convincing to get the doctor to order a Lyme Western Blot- he was quite surprised when the majority of the bands were positive. He even apologized to us when he realized he had initially misdiagnosed her case. Unfortunately, by then, the treatment protocol he used (for an acute beginning infection) turned out to be woefully inadequate. The consulting Infectious Disease doctor as well, thought that a few weeks of oral antibiotics would cure all, and any remaining symptoms would resolve themselves.
Sadly, this did not happen and my daughter's health issues steadily grew worse. Adequate treatment has been difficult to come by. Specialists we have been sent to have given us their best thoughts, then suggested she should see yet another specialist for their input. Months dragged on and she was losing the ability to walk, to think, to live any sort of productive life.
Lyme can overwhelm and dampen the immune system allowing various tick-related co-infections to fester. Once the lab-verified Babesia, Bartonella and Mycoplasma infections were addressed, she started to respond to treatment for Lyme, Unfortunately, we do not know if the damage to her brain, the hypothalamus and pituitary glands, and the autonomic nervous system, will be permanent or not.
And just in case some reader thinks that these diagnosis and treatments are from some fly-by-night "quacks" who prey on the afflictions of desperately ill patients, you are so wrong. The doctors involved in my daughter’s case, Infectious Disease, Neurology and Endocrinology teach at well respected Medical Schools, and they all agree on one important point: The damage done to her was done back in 2002 when her initial antibiotic treatment was neither strong enough, nor given to her for a long enough period of time.
princesspat
In 1980, when I was 35 yrs old my life changed.... What started as acute TMJ became widespread chronic pain. Over the years the diagnostic words have changed: an arthritis like condition, Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, etc. As the years have passed, the disease has progressed: arthritis is more pronounced, vertigo, dizziness and "seizure like" episodes have occurred, a significant disruption of my cognitive abilities lead to early retirement, and a compromised immune system has allowed problems such as gluten intolerance and fungal infections to develop.
As I have sought medical assistance for all of the above, a question frequently asked but never addressed was if I could possibly have Lyme disease. So as I read the Lyme Awareness series last year, I decided, with the cooperation of my doctors, to test for the disease. The test results returned and were interpreted as either positive or inconclusive, depending on the point of view of the physician involved. With the encouragement and support of a lyme literate physician, I decided to try a course of antibiotic treatment.
The decision to pursue treatment for Lyme disease has not been without consequence. While my health initially improved, I was not able to tolerate the side effects of the antibiotics. Nearly a year later I still have fungal infections in my mouth, nose and sinuses, on my face, and down my torso. As I have developed a resistance to the commonly prescribed antifungal medications, this has become harder to manage.
The other consequence is more subtle. Learning about Lyme disease has both answered questions and lead to deep frustration. I have lived with a chronic illness for 30 yrs now. With great determination, and to the best of my abilities, I have lived a full life. Yet, I still long to "be well". The hope there might actually be a cause and a treatment for the illness I struggle with is seductive. The reality of treatment limitations is deeply disappointing. The controversies involved with Lyme disease are upsetting.
I hesitated to write about my experience this year because I don’t want to discourage anyone who is hoping to benefit from the excellent information the Lyme Awareness series has presented. Living with chronic illness is a deep and daily challenge for many in the dkos community. I appreciate sharing the struggles, coping skills, information and support.
Missys Brother
I've had lyme disease four times and I live in Connecticut. First two times, I had no rash and went into Stage 3. Second time was reinfection. Third time I did get a rash. Fourth time, I was told it might be a flare up from previous infections. Hard to describe the pain that I felt at times - like someone hitting me in my knee caps with a hammer. I would get up in the mornings feeling like I had slept on concrete all night. Take a shower and have to lay back down as I didn't have the energy to get dressed. Luckily the antibotics have worked each time for me although I still have lingering pain at times in my knees. Also feel extremely tired at times. I use to describe it to my friends as feeling like I was trapped in the body of an eighy year old man.
There are deer all my neighborhood and I am a big gardener. The day I was standing on my porch afraid to go out into my yard is the day I knew I had to change something. Either buy a condo or declare war. For the past three/four years, I have my yard sprayed three times a year for ticks, despite the fact that I've always been an organic gardener.
*Mandy Hughes is the last person in the Under Our Skin video clip. In the movie which was shot over the course of several years, one sees her situation deteriorate and begin to improve. She posted an update on her situation on the Under Our Skin blog.