Diagnosis and treatment of Babesia & other coinfections
Dr. Horowitz has treated almost 12,000 patients with Lyme Disease over the past twenty years. He has observed that most of his patients have had multiple infections, viruses and parasites and that for this reason, the standard of care recommended by the IDSA has been less than effective. Patients may have one or more coinfections such as Babesia, Erlichia, Bartonella, additional piroplasms which don’t test well with the standard testing. Some have hormonal disorders, nutritional and enzyme deficiencies, GI problems, autonomic nervous system disfunction and other symptom complexes.
To describe the challenge of treating a patient with MCIDS, Dr Horowitz uses the following analogy. “It’s like the patient has ten nails in their foot, and you pull out only one. They still have pain.” Doctors need to address all of the factors and overlapping symptoms.
Also, there are evidently different strains of Borrelia and Babesia that may not be detected with the ELISA or the Western Blot tests. Recent evidence suggests that new species of tick borne coinfections may be arising and may occur in regions of the US and worldwide. One tick bite can transmit a cesspool of multiple infections.
Here is an intriguing paper by Dr. Horowitz illustrating the interest in investigating Alternative Medicine to treat Lyme and coinfections that elude conventional Western medicine. Herbs, Hormones & Heavy Metals. (.pdf)
Dr. Richard Horowitz is the President of the International Lyme and Associated Disease Educational Foundation. He serves the Lyme community in multiple ways, primarily as an internist at the Hudson Valley Healing Arts Center, in Hyde Park, New York. In 2007, the Turn the Corner Foundation named him the Humanitarian of the Year for his ongoing work with chronic Lyme disease.
Genomes of 13 strains Lyme bugs mapped
But what can medical science tell us about dealing with chronic inflammation? There is actually good news in this area from a recent study.
Researchers have mapped the genomes of the 13 strains of bacterium that play the most prominent role in causing Lyme disease. This project may help us understand why a significant number of Lyme patients suffer with a chronic inflammatory response. The study may yield some answers to the problem of inflammation, an auto-immune response. More importantly, it may give us clues about what to do about it.
Apparently the discovery is exciting Lyme researchers because they have found that proteins on the surface of the Borrelia bacterium can signal the immune system by attaching to receptors on the surface of white blood cells. The white blood cells are the ones responsible for fighting off infection.
That tiny attachment triggers production of an external protein that traps and stops other white blood cells from controlling the production of antibodies. When this occurs, antibodies are churned out in large numbers, often non-specifically, which results in inflammation throughout the body.
Researchers conclude that through therapeutic intervention they may be able to detach that external protein, and thereby suppress the inflammatory response.
Here is the abstract of the article, online in the Journal of Bacteriology:
Borrelia burgdorferi is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.
Consider the spirochete: a minute, ancient creature. And yet it can cause so much distress. Something so tiny and simple can wreck such collosol havoc. Now perhaps the discovery of this microscopic external protein, only recently become visible to scientists, can help bring about healing.
Has Lyme changed your mind?
I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.
My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.
From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.
Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.
The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.
For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:
This year, change your mind.
I'm Dreaming of a Healthy Christmas...
Holidays are a mixed bag, aren't they? On one hand, they offer a break from routine workday (or sick-day) stress. On the other, they can cause even more stress. First, there's the family get-togethers, which wouldn't be so bad except it means putting up with Uncle Fred or cousin Irma, who want to engage you in an intense conversation about your Lyme disease symptoms (which you're trying unsuccessfully to put out of your mind for one evening), or they are insisting that you immediately make an appointment to see this really amazing doctor they found because (although they have done no research themselves) they don't believe your doctor is treating you correctly.
Or, and this is the more likely scenario, your friends and family are thrilled to see you looking pretty good, walking upright, tracking conversation with ease, so they totally ignore the fact that you are indeed sick. They proceed to put the whole year (or three, or five, etc.) out of their minds completely. Like a bad marriage, your illness gets pushed into the past so everybody in the room can feel more comfortable. Your mother or your dearest friend then proceeds to pour you a glass of wine, pass the See's chocolate, and swoon over little Chloe's sugar cookies which are decorated with more candy than you've seen all year.
You may be able to politely resist the alcohol and pass on the cookie tray, but with a sigh you glance over the traditional holiday foods piled high on the plate your dear ones have placed in front of you. And it smells so good. If you've been making a sincere effort to heal, you have been good for months. No sugar, no wine, no Girl Scout cookies for goodness sake. Why not indulge a little, you tell yourself. However, as anybody with Lyme can tell you, one night of sweet indulgence on sugar or alcohol can zap your strength for many days, bring on a dismal case of brain fog and trigger chronic symptoms such as skin rashes, headaches, and more.
As strict as I am with myself, even I find it difficult to resist holiday temptations. A colleague wanted to meet downtown at a local brewery the other day. I had my last beer on Halloween and it brought about a skin rash on my fingers and hands, my weakest spot and most pernicious symptom. I am not drinking beer anymore. And wine, which is said to be good for you, is still alcohol, it's still sugar, and although it's a lovely thing to share a toast with your dear ones over the holidays it can be done with mineral water. Discipline? Yes, you need it in spades. Determination too. But tell me, what more motivating factor do you need than your own recent experience with Lyme symptoms?
My life is no less joyful or rich because I am not sipping wine, ordering a slice of heavenly Tiramisu, or dipping into the candy bowl after dinner. In fact it's just the opposite. The quality and beauty of my life intensifies the more I tend to my health. This Christmas I'll lift my glass and toast to my loved ones' health. Perhaps it's a cliche that if you have your health you have everything, but it's true.
Happy holidays, everybody. May you have fulfilling work, understanding relatives, true friends, and a clear mind and healthy heart so you may enjoy them all. "Wisdom is to the soul what health is to the body."
Managing chronic Lyme symptoms
Most chronic disease (perhaps including chronic Lyme) is a result of long-term behaviors, including diet, exercise, and other lifestyle factors. This should come as no surprise. Habits may be hard to break, but if getting healthy is our goal, we do ourselves a disservice when we don't recognize the problems caused by our own repeated behavior. Complementary and Alternative medical practitioners, such as nutritionists, acupuncturists and nurse practitioners are generally aware of this. Many perhaps most, Western doctors are not.
My own experience has taught me this. Eating sugary food or drinking alcohol is one example. I've been living with so-called chronic Lyme for 6 years now. When I make the choice to eat those cookies, knock back that beer, stress out from overworking, or skip the gym for days on end, my body reacts. I can ignore the obvious cause and effect. I can attribute the flare-ups and Lyme-brain to the capricious Borrelia infection, or I can take responsibility for giving the infection an advantage. I can choose to recognize my own culpability, and next time the cookies are passed around or my friend wants to pour me a glass of wine, I can simply say no thanks. What may have begun with a Borrelia infection from a tick bite can be exacerbated by habitual behaviors that continue unchecked for years or even many decades. Nothing about chronic Lyme is simple. There is even controversy over calling it 'chronic Lyme.' But one thing seems clear. Medicine alone cannot cure a person suffering with long-term Lyme symptoms. We need to approach healing from multiple levels.
Success stories are published here for many reasons. We need the inspiration, the 'atta girl/boy' pat on the back, for one thing. For another, we want a recipe. 'How did that person do it? What protocol did she or he follow? If they can do it, maybe there is hope for me.'
Managing chronic Lyme disease is dicey, no question about it. But there are many ways to prevent the problems we know are lurking, by making intelligent choices and stopping behavior known to increase the problems. One way to begin raising your awareness around habits that may be hurting you is to see what the Lyme experts say about it. If you think for one minute that drinking alcohol is okay when you have a Lyme infection, just check out what Dr. Burrascano has to say about it.
Dr. Burrascano's bullet list for chronic Lyme:
CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse
* This post was modified by the editor on 11.24.10.
Have Lyme? Have patience.
My mother raised five rambunctious kids. She tells me she often prayed for guidance. Her favorite prayer was: God, grant me patience, and give it to me RIGHT NOW! Patience is certainly a virtue in healing chronic or post-Lyme disease. But cognitively knowing it and embodying patience in everyday life are two different things.
Here in the mountains of NC, we've just received our first snow. Although I welcome the changing seasons, I find myself getting a tad anxious about the coming winter. It's hard to be patient when you have no control. And of course, who has control over the weather? Last winter was no picnic for people with Lyme. The cold weather poses many more challenges to people who struggle to keep their body temperature at an even keel. Plus, skin conditions that are common with Lyme and co-infections are exacerbated by winter weather, little sun exposure, and snug clothing.
Seeking personal inspiration and practical advice about treating Lyme, I looked back through our posts and conversations with healthy post-Lyme survivors. How do these people remain strong? Are they just made of different stuff? Do they worry, like I do, about tiny signs of Lyme's return, a sore that won't go away, a persistent itchiness. The occasional Lymie surge of dizziness that fades almost as quickly as it comes on.
Then I found Darryl Crews' advice about treating Lyme disease, which I want to share with you. I so appreciate his level-headed approach to treatment. Also, not surprised to see 'patience' right there at the top of the list:
1. PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.
2. MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.
3. DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.
4. SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.
5. SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.
6. EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)
I especially like #4. My treatment routine includes meditation and deep breathing at night and again in the morning. Sleep is indeed essential, and these little habits help create the space for a good night's sleep.
I've come to accept that my approach to treating Lyme is unique, and if it's working, it's the right thing to do. But those dark clouds outside the window, that nippy breeze lifting leaves off the trees. What Lyme treatment approach can fend off cold weather? I'm still treating with teasel tincture and hoping it will help keep my body warm, as it has been doing for several months now. And come to think of it, it's lunchtime. A nice pot of carrot-ginger soup sounds perfect. Ginger is a warming food.
What is your attitude about winter? How do you stay warm enough and protect your skin? Lyme treatment, especially treating for chronic Lyme disease, is different for for everyone, but there is so much we can learn from each other.
Wanted: YOU to live a healthy post-Lyme life
I honestly can't remember (Lyme-brain) who said it to me, but that casual remark has been rolling around in my head a lot lately. I'm not exactly planning a trip, but my professional workload has increased exponentially this fall, and I am multi-tasking like a brand-new BlackBerry. I feel I actually COULD plan a trip, and that is almost just as good, if you know what I'm saying.
Chronic Lyme disease has been a way of life for five years, however, I got a wake-up call yesterday when I caught myself saying out loud, "I could never have multi-tasked like this when I had Lyme."
When I had Lyme.
When I HAD Lyme.
Such a lovely phrase! I could sing.
Let me back up for a second though and tell you: I have no medical proof of this statement. In fact, in all the years I've been looking into the problem of Lyme disease treatment and diagnoses, what I have discovered is evidence to suggest that a healthy post-Lyme survivor will probably continue to play host to the Lyme bacterial complex throughout their life.
So the question is, why do some people, regardless of their duration or methods of Lyme disease treatment, develop into healthy post-Lyme survivors -- and why do some people develop symptoms of chronic Lyme disease? It's a maddening situation.
I talk to many people involved in the medical and healing professions. When I first began conducting these interviews five years ago, I observed that many doctors had differing opinions about every aspect of Lyme, particularly when it came to Lyme disease treatment. I assumed that I would soon begin to hear the same approach being used by the doctors I interviewed. But instead, over the years I have noticed that all the experts have their own perspectives, their own opinions, their own approaches to healing Lyme. And Lyme isn't simple. Nothing about it seems to be simple, though much about it has certainly been oversimplified.
The answer to that question, of why do some suffer from chronic Lyme symptoms, while others seem to drift back into a post-Lyme level of relatively good health, is a mystery to me. I will keep asking the questions, and knock on wood in the meantime.
I receive a lot of letters from readers of this blog, and you are all in my heart every single day. My wish is for all of you to experience that unique and buzzing wonder that is a healthy mind and body: ready, willing, and able, to work, love, and live a normal life again. To surprise yourself one day soon by hearing these words come out of your own mouth: When I HAD Lyme...
And maybe you'll plan a trip too!
Lyme doctor punished for helping children
Bartlett sponsored a bill that was passed unanimously by Connecticut State Legislature in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. But although it may protect doctors in the future, it's not doing anything to protect Dr Jones right now.
"The law 'allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.'"
Jones has been ordered to hire a monitor to examine his patients charts every month, given four years of probation and smacked with a $10,000 fine. Jones expects the monitor may cost $2,000 - $10,000 per month. He says "it's hopeless," because he simply cannot afford it. But what really burns up his supporters is that the good doctor appears to be the mouse in a game of legal cat-and-mouse being played out at his expense.
In a New Haven Advocate article from July 13, Time Is Running Out For Controversial Chronic Lyme Disease Doctor Betsy Yalga writes,
"None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children."
Please listen to a brief interview with Dr Charles Ray Jones.
Biotoxins test and chronic Lyme
People who cannot naturally eliminate biotoxins develop chronic illness. About 20% of patients with Lyme disease, due to their hepa-type, are susceptible to biotoxin illnesses. However, according to Dr Richie Shoemaker and other biotoxin experts, the toxins can be eliminated and good health can be restored.
From biotoxin.info: "Many physicians feel that diagnostic tests for Lyme are unreliable, due to differences between strains of the bacteria, and the potential for co-infections with Bartonella, Babesia and/or Ehrlichia. A team of researchers at Boston University Medical Center (Cartwright, Martin Donta) discovered and patented (US Patent No. 6,667,038) the Bbtox1 neurotoxin. They reported that the effects of Bbtox1 were consistent with that of botulinium and other cytoskeletal toxins. Even so, there are no chemical tests for the disease-causing toxin B. burgdorferi produces and releases into human body, even as antibiotics are killing the bacteria. Without such tests, the medical debate over whether or not Lyme can be quickly cured has surged in recent years, provoking frequent battles in which physicians have attacked each other's credibility and integrity (and in a few cases, even their medical licenses). All too often, suffering patients have been left in the middle, essentially ignored by doctors who contend that their long-term symptoms aren't the result of Chronic Lyme, but of 'Fibromyalgia,' 'Chronic Fatigue Syndrome', 'depression,' or 'irritable bowel syndrome.'"
Testing for nervous system dysfunction can be done online. The Visual Contrast Sensitivity (VCS) test is a pattern recognition test that Dr Shoemaker uses to help determine how the nervous system is functioning. According to Dr Joseph Burrascano, at least 70 - 90% of patients whose VCS test is abnormal feel better with treatment, while 30% of patients who test normal from the VCS test feel better with neurotoxin treatment.
When testing for Lyme infection, coinfections are often culprits that go undetected. Be sure to look for Bartonella or Babesia, which destroys red blood cells.
Dr Shoemaker and other Lyme experts agree that if you find elevated C4-A markers, and if symptoms are persistent beyond the initial antibiotic protocol that may indicate that a longer antibiotic treatment, possibly including intravenous antibiotic therapy, is needed. As he makes it clear in this video, you and your doctor will be the judge in whether or not you should use long-term antibiotics.
Chronic Lyme or not - Get educated
A national coalition of health care workers, policy makers and others, the Partnership to Fight Chronic Disease (PFCD), is attempting to educate Americans about the significance of the crisis in our current overall state of health.
The PFCD mission:
* The PFCD believes that rising rates of chronic health problems pose a significant and unsustainable burden on the U.S. health care system, and that the viability and strength of the system presently and in the future relies on a willingness to enact policies that help Americans better prevent and manage chronic illnesses.
The PFCD and the Centers for Disease Control (CDC) do not categorize Lyme as a chronic disease. Therefore, it seems unlikely that this organization will help Lyme patients who continue to suffer with Lyme symptoms even though they've already been treated according to the CDC guidelines--a 30-day course of antibiotics.
However, if you suffer with chronic Lyme you may be interested in these six "unhealthy truths" about chronic disease in the United States, which I copied from the PFCD website:
* Truth #1: Chronic diseases are the No. 1 cause of death and disability in the U.S.
* Truth #2: Treating patients with chronic diseases accounts for 75 percent of the nation's health care spending.
* Truth #3: Two-thirds of the increase in health care spending is due to increased prevalence of treated chronic disease.
* Truth #4: The doubling of obesity between 1987 and today accounts for 20 to 30 percent of the rise in health care spending.
* Truth #5: The vast majority of cases of chronic disease could be better prevented or managed.
* Truth #6: Many Americans are unaware of the extent to which chronic diseases could be better prevented or managed.
If you consider yourself ill with chronic Lyme disease, one "healthy truth" to embrace is to get better educated about how to manage your illness. I realize that it's the toughest job you can take on, especially while you're sick. Believe me, I know because I've been there. Although the status of "chronic" or "Post-Lyme Syndrome" may not be easily or quickly determined by the policy makers, your health is what counts here.
Get educated about ways to manage your health, such as eating foods that will nurture (organic greens and proteins), not harm you (refined sugar).
LDRD members, login to listen to Lyme experts.
Chronic Lyme disease is just a name
The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.
The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."
Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.
She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.
I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.
As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.
Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.
People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.
I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.
$25,000 for Lyme research
Researchers at Viral Genetics, Inc., are hoping to answer that question and more.
The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.
"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.
Chronic Lyme Disease
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.