With any luck, your testing will be done in the office of a doctor who knows something about Lyme disease, so that with your test results and her expertise you can at least take Lyme disease off the table.<\/p>\n\n\n\n
Tricky symptoms<\/strong> of Chronic Lyme<\/h3>\n\n\n\nLet\u2019s take one of Lyme\u2019s symptoms, fatigue, as an example. Feeling tired all the time is an underlying symptom of literally dozens of conditions, from emotional depression and underactive thyroid to heart disease, neurological disorders, early cancers, and anemia. Here\u2019s the wiki list if you\u2019re interested.<\/a><\/p>\n\n\n\nWhen you go to a doctor complaining of fatigue, your medical history, physical exam, and lab tests will trim the list of potential causes significantly. Let\u2019s say your doc finds you have an underactive thyroid gland. Good news! It\u2019s a clear-cut condition with a straightforward answer. You\u2019re prescribed thyroid replacement and, lo, you feel better almost immediately. Oh, if all patient care were so simple.<\/p>\n\n\n\n
But what if you felt only 10% better after treatment? Then it\u2019s back to the drawing board, with more tests and more doctor visits. And if your doctor doesn\u2019t test you for Lyme then Lyme as a cause of your fatigue has not been ruled out.<\/p>\n\n\n\n
And that\u2019s only the first part<\/strong><\/h3>\n\n\n\nUnderstand that so-called chronic Lyme disease is really two quite separate conditions.<\/p>\n\n\n\n
- One is called post-treatment Lyme disease syndrome (PTLDS).<\/li>
- The other is called disseminated Lyme disease, which in turn is subdivided into Stage 1 (early) and Stage 2 (advanced).<\/li><\/ul>\n\n\n\n
Both types of Lyme disease are labeled \u201cprotean\u201d after the Greek god Proteus, the original shape-shifter in myths, able to appear in multiple manifestations.<\/p>\n\n\n\n
A protean disease has a great diversity of presenting symptoms. Fortunately, most medical or surgical problems are not protean. Strep throat presents with sore throat and fever, mononucleosis with swollen glands and fatigue. Not protean.<\/p>\n\n\n\n
Lyme? Oy veh!<\/p>\n\n\n\n
Lyme disease is protean extraordinaire. Here are two of the most popular Lyme questionnaires, pretty much respected by Lyme-literate physicians. Click through and have a look at the symptoms, from rib pain to irritable bladder and everything in between.<\/p>\n\n\n\n
—Armin Labs<\/a>
—Horowitz Lyme-MSIDS Questionnaire<\/a><\/p>\n\n\n\nIf that\u2019s not challenging enough, here\u2019s a list of still more symptoms linked to Lyme disease<\/a>.<\/p>\n\n\n\n- Cough, shortness of breath<\/li>
- Unexplained fevers, chills, sweats<\/li>
- Cystitis (bladder inflammation)<\/li>
- Fatigue<\/li>
- Chest plain\/heart palpitations<\/li>
- Cardiac irregularity<\/li>
- Double\/blurry vision, pain or floaters<\/li>
- Photophobia (abnormal aversion to bright light)<\/li>
- Hair loss<\/li>
- Fever<\/li>
- Tick bite(s)<\/li>
- Rash at bite site or other areas<\/li>
- Difficulty swallowing<\/li>
- Swollen glands<\/li>
- Sore throat<\/li>
- Swelling around the eyes<\/li>
- Unexplained weight loss\/gain<\/li>
- Buzzing, ringing or ear pain<\/li>
- Difficulty eating<\/li>
- Nausea or vomiting<\/li>
- Diarrhea or constipation<\/li>
- Tremors<\/li>
- Eyelid\/facial twitching or Bell’s Palsy<\/li>
- Joint pain and swelling<\/li>
- Abdominal cramping\/pain<\/li>
- Irritable bladder or bladder dysfunction<\/li>
- Testicular\/pelvis pain<\/li>
- Neck creaks, cracks or stiffness<\/li>
- Joint or back stiffness<\/li>
- Muscle pain or cramps<\/li>
- Insomnia<\/li>
- TMJ (jaw pain)<\/li>
- Headaches<\/li>
- Tingling or numbness<\/li>
- Poor balance<\/li>
- Difficulty walking<\/li>
- Seizure activity<\/li>
- Stabbing sensations<\/li>
- Dizziness<\/li>
- Personality changes<\/li>
- Mood swings<\/li>
- Irritability<\/li>
- Depression<\/li>
- Confusion<\/li>
- Anxiety<\/li>
- Difficulty concentrating or reading<\/li>
- Gastritis<\/li>
- Menstrual irregularity<\/li>
- Loss of libido<\/li>
- Trouble speaking<\/li>
- Disorientation<\/li><\/ul>\n\n\n\n
Grim stories and a suggestion<\/strong><\/h3>\n\n\n\nWhat\u2019s emerged from this bouillabaisse of symptoms are grim stories of patients who experienced years and years of misdiagnosis and incorrect treatment. Ally Hilfiger spent most of her teenage life in and out of psych hospitals until someone diagnosed Lyme.<\/p>\n\n\n\n
Kris Kristofferson<\/a> had been diagnosed with Alzheimer\u2019s until a doctor tested him for Lyme. Kelly Osbourne\u2019s symptoms, including pain, seizures, and psychiatric disturbances, lasted for years.<\/p>\n\n\n\nPlease pause, right now, and consider the question I posed earlier. Namely, if you have any chronic symptom or symptoms that have been undiagnosed or you\u2019re not responding to treatment for your symptoms\u2014and especially if you\u2019ve lived in or visited a Lyme-rich area–ask your doctor to test you for Lyme.<\/p>\n\n\n\n
Here\u2019s the question to put to your physician: \u201cCould you test me for Lyme using the Western Blot technique?\u201d<\/p>\n\n\n\n
You will hear one of three responses:<\/p>\n\n\n\n
- “No. I read there\u2019s no such thing as chronic Lyme. Stay off the internet.\u201d If you hear this, find another doctor.<\/li>
- “OK, but we\u2019ll start with the ELISA test first and then go to Western Blot.\u201d Politely refuse, pointing out that ELISA misses 50% of Lyme cases.<\/li>
- \u201cSure. Go on over to the lab now.\u201d<\/li><\/ul>\n\n\n\n
Let\u2019s talk about that snippy \u201cno such thing\u201d answer. There are different stages of Lyme disease.<\/p>\n\n\n\n
First, there\u2019s acute Lyme disease (also called early localized Lyme or Stage 1 Lyme), which is a flu-like illness occurring within days of a tick bite. Nobody argues about this. It\u2019s easy to treat with three weeks of an antibiotic like doxycycline.<\/p>\n\n\n\n
Second, what\u2019s commonly called chronic Lyme disease probably should be dropped (though it never will be) and replaced by two separate and distinct entities.<\/p>\n\n\n\n
- PTLDS<\/strong> The first exists in someone who had a definite diagnosis of Lyme and received adequate treatment but never felt well again OR this person felt well for a while and then months later had a recurrence of symptoms that he or she attributed to Lyme. This condition is called post-treatment Lyme disease syndrome (PTLDS). Symptoms are real, but there’s little evidence of infection and clinical studies have shown that antibiotic treatment is no better than placebo. In fact, some research is showing that PTLDS is an autoimmune disorder triggered by the initial Lyme infection.<\/li>
- Disseminated Lyme disease<\/strong> The second condition is completely separate. It occurs in someone who has been infected with the Lyme bacteria for anywhere from months to years but never knew it OR they knew they once had Lyme but likely received inadequate treatment. All they know for certain is they’re chronically ill with a variety of symptoms and have been told repeatedly “we can’t find anything wrong with you.” The term for this condition is disseminated Lyme disease, with new symptoms occurring months to years after the original tick bite. This illness does respond to antibiotics.<\/li><\/ul>\n\n\n\n
Interestingly, even though PTLDS is allegedly not an infection, most doctors experienced with Lyme disease (called Lyme-literate doctors) will give their patients a course of antibiotics as a better-safe-than-sorry precautionary measure.<\/p>\n\n\n\n
When you go to a doctor complaining of fatigue, your medical history, physical exam, and lab tests will trim the list of potential causes significantly. Let\u2019s say your doc finds you have an underactive thyroid gland. Good news! It\u2019s a clear-cut condition with a straightforward answer. You\u2019re prescribed thyroid replacement and, lo, you feel better almost immediately. Oh, if all patient care were so simple.<\/p>\n\n\n\n
But what if you felt only 10% better after treatment? Then it\u2019s back to the drawing board, with more tests and more doctor visits. And if your doctor doesn\u2019t test you for Lyme then Lyme as a cause of your fatigue has not been ruled out.<\/p>\n\n\n\n
And that\u2019s only the first part<\/strong><\/h3>\n\n\n\nUnderstand that so-called chronic Lyme disease is really two quite separate conditions.<\/p>\n\n\n\n
- One is called post-treatment Lyme disease syndrome (PTLDS).<\/li>
- The other is called disseminated Lyme disease, which in turn is subdivided into Stage 1 (early) and Stage 2 (advanced).<\/li><\/ul>\n\n\n\n
Both types of Lyme disease are labeled \u201cprotean\u201d after the Greek god Proteus, the original shape-shifter in myths, able to appear in multiple manifestations.<\/p>\n\n\n\n
A protean disease has a great diversity of presenting symptoms. Fortunately, most medical or surgical problems are not protean. Strep throat presents with sore throat and fever, mononucleosis with swollen glands and fatigue. Not protean.<\/p>\n\n\n\n
Lyme? Oy veh!<\/p>\n\n\n\n
Lyme disease is protean extraordinaire. Here are two of the most popular Lyme questionnaires, pretty much respected by Lyme-literate physicians. Click through and have a look at the symptoms, from rib pain to irritable bladder and everything in between.<\/p>\n\n\n\n
—Armin Labs<\/a>
—Horowitz Lyme-MSIDS Questionnaire<\/a><\/p>\n\n\n\nIf that\u2019s not challenging enough, here\u2019s a list of still more symptoms linked to Lyme disease<\/a>.<\/p>\n\n\n\n- Cough, shortness of breath<\/li>
- Unexplained fevers, chills, sweats<\/li>
- Cystitis (bladder inflammation)<\/li>
- Fatigue<\/li>
- Chest plain\/heart palpitations<\/li>
- Cardiac irregularity<\/li>
- Double\/blurry vision, pain or floaters<\/li>
- Photophobia (abnormal aversion to bright light)<\/li>
- Hair loss<\/li>
- Fever<\/li>
- Tick bite(s)<\/li>
- Rash at bite site or other areas<\/li>
- Difficulty swallowing<\/li>
- Swollen glands<\/li>
- Sore throat<\/li>
- Swelling around the eyes<\/li>
- Unexplained weight loss\/gain<\/li>
- Buzzing, ringing or ear pain<\/li>
- Difficulty eating<\/li>
- Nausea or vomiting<\/li>
- Diarrhea or constipation<\/li>
- Tremors<\/li>
- Eyelid\/facial twitching or Bell’s Palsy<\/li>
- Joint pain and swelling<\/li>
- Abdominal cramping\/pain<\/li>
- Irritable bladder or bladder dysfunction<\/li>
- Testicular\/pelvis pain<\/li>
- Neck creaks, cracks or stiffness<\/li>
- Joint or back stiffness<\/li>
- Muscle pain or cramps<\/li>
- Insomnia<\/li>
- TMJ (jaw pain)<\/li>
- Headaches<\/li>
- Tingling or numbness<\/li>
- Poor balance<\/li>
- Difficulty walking<\/li>
- Seizure activity<\/li>
- Stabbing sensations<\/li>
- Dizziness<\/li>
- Personality changes<\/li>
- Mood swings<\/li>
- Irritability<\/li>
- Depression<\/li>
- Confusion<\/li>
- Anxiety<\/li>
- Difficulty concentrating or reading<\/li>
- Gastritis<\/li>
- Menstrual irregularity<\/li>
- Loss of libido<\/li>
- Trouble speaking<\/li>
- Disorientation<\/li><\/ul>\n\n\n\n
Grim stories and a suggestion<\/strong><\/h3>\n\n\n\nWhat\u2019s emerged from this bouillabaisse of symptoms are grim stories of patients who experienced years and years of misdiagnosis and incorrect treatment. Ally Hilfiger spent most of her teenage life in and out of psych hospitals until someone diagnosed Lyme.<\/p>\n\n\n\n
Kris Kristofferson<\/a> had been diagnosed with Alzheimer\u2019s until a doctor tested him for Lyme. Kelly Osbourne\u2019s symptoms, including pain, seizures, and psychiatric disturbances, lasted for years.<\/p>\n\n\n\nPlease pause, right now, and consider the question I posed earlier. Namely, if you have any chronic symptom or symptoms that have been undiagnosed or you\u2019re not responding to treatment for your symptoms\u2014and especially if you\u2019ve lived in or visited a Lyme-rich area–ask your doctor to test you for Lyme.<\/p>\n\n\n\n
Here\u2019s the question to put to your physician: \u201cCould you test me for Lyme using the Western Blot technique?\u201d<\/p>\n\n\n\n
You will hear one of three responses:<\/p>\n\n\n\n
- “No. I read there\u2019s no such thing as chronic Lyme. Stay off the internet.\u201d If you hear this, find another doctor.<\/li>
- “OK, but we\u2019ll start with the ELISA test first and then go to Western Blot.\u201d Politely refuse, pointing out that ELISA misses 50% of Lyme cases.<\/li>
- \u201cSure. Go on over to the lab now.\u201d<\/li><\/ul>\n\n\n\n
Let\u2019s talk about that snippy \u201cno such thing\u201d answer. There are different stages of Lyme disease.<\/p>\n\n\n\n
First, there\u2019s acute Lyme disease (also called early localized Lyme or Stage 1 Lyme), which is a flu-like illness occurring within days of a tick bite. Nobody argues about this. It\u2019s easy to treat with three weeks of an antibiotic like doxycycline.<\/p>\n\n\n\n
Second, what\u2019s commonly called chronic Lyme disease probably should be dropped (though it never will be) and replaced by two separate and distinct entities.<\/p>\n\n\n\n
- PTLDS<\/strong> The first exists in someone who had a definite diagnosis of Lyme and received adequate treatment but never felt well again OR this person felt well for a while and then months later had a recurrence of symptoms that he or she attributed to Lyme. This condition is called post-treatment Lyme disease syndrome (PTLDS). Symptoms are real, but there’s little evidence of infection and clinical studies have shown that antibiotic treatment is no better than placebo. In fact, some research is showing that PTLDS is an autoimmune disorder triggered by the initial Lyme infection.<\/li>
- Disseminated Lyme disease<\/strong> The second condition is completely separate. It occurs in someone who has been infected with the Lyme bacteria for anywhere from months to years but never knew it OR they knew they once had Lyme but likely received inadequate treatment. All they know for certain is they’re chronically ill with a variety of symptoms and have been told repeatedly “we can’t find anything wrong with you.” The term for this condition is disseminated Lyme disease, with new symptoms occurring months to years after the original tick bite. This illness does respond to antibiotics.<\/li><\/ul>\n\n\n\n
Interestingly, even though PTLDS is allegedly not an infection, most doctors experienced with Lyme disease (called Lyme-literate doctors) will give their patients a course of antibiotics as a better-safe-than-sorry precautionary measure.<\/p>\n\n\n\n
Both types of Lyme disease are labeled \u201cprotean\u201d after the Greek god Proteus, the original shape-shifter in myths, able to appear in multiple manifestations.<\/p>\n\n\n\n
A protean disease has a great diversity of presenting symptoms. Fortunately, most medical or surgical problems are not protean. Strep throat presents with sore throat and fever, mononucleosis with swollen glands and fatigue. Not protean.<\/p>\n\n\n\n
Lyme? Oy veh!<\/p>\n\n\n\n
Lyme disease is protean extraordinaire. Here are two of the most popular Lyme questionnaires, pretty much respected by Lyme-literate physicians. Click through and have a look at the symptoms, from rib pain to irritable bladder and everything in between.<\/p>\n\n\n\n
—Armin Labs<\/a> If that\u2019s not challenging enough, here\u2019s a list of still more symptoms linked to Lyme disease<\/a>.<\/p>\n\n\n\n What\u2019s emerged from this bouillabaisse of symptoms are grim stories of patients who experienced years and years of misdiagnosis and incorrect treatment. Ally Hilfiger spent most of her teenage life in and out of psych hospitals until someone diagnosed Lyme.<\/p>\n\n\n\n Kris Kristofferson<\/a> had been diagnosed with Alzheimer\u2019s until a doctor tested him for Lyme. Kelly Osbourne\u2019s symptoms, including pain, seizures, and psychiatric disturbances, lasted for years.<\/p>\n\n\n\n Please pause, right now, and consider the question I posed earlier. Namely, if you have any chronic symptom or symptoms that have been undiagnosed or you\u2019re not responding to treatment for your symptoms\u2014and especially if you\u2019ve lived in or visited a Lyme-rich area–ask your doctor to test you for Lyme.<\/p>\n\n\n\n Here\u2019s the question to put to your physician: \u201cCould you test me for Lyme using the Western Blot technique?\u201d<\/p>\n\n\n\n You will hear one of three responses:<\/p>\n\n\n\n Let\u2019s talk about that snippy \u201cno such thing\u201d answer. There are different stages of Lyme disease.<\/p>\n\n\n\n First, there\u2019s acute Lyme disease (also called early localized Lyme or Stage 1 Lyme), which is a flu-like illness occurring within days of a tick bite. Nobody argues about this. It\u2019s easy to treat with three weeks of an antibiotic like doxycycline.<\/p>\n\n\n\n Second, what\u2019s commonly called chronic Lyme disease probably should be dropped (though it never will be) and replaced by two separate and distinct entities.<\/p>\n\n\n\n Interestingly, even though PTLDS is allegedly not an infection, most doctors experienced with Lyme disease (called Lyme-literate doctors) will give their patients a course of antibiotics as a better-safe-than-sorry precautionary measure.<\/p>\n\n\n\n
—Horowitz Lyme-MSIDS Questionnaire<\/a><\/p>\n\n\n\nGrim stories and a suggestion<\/strong><\/h3>\n\n\n\n
![\"Autoimmune](\"https:\/\/wholehealthchicago.com\/blog\/wp-content\/uploads\/2021\/03\/AdobeStock_334266233-scaled.jpeg\")
<\/a><\/div>![\"Lyme](\"https:\/\/wholehealthchicago.com\/blog\/wp-content\/uploads\/2021\/03\/AdobeStock_283703934-150x150.jpeg\")
<\/a><\/div>![\"CIRS\"](\"https:\/\/wholehealthchicago.com\/blog\/wp-content\/uploads\/2021\/07\/CIRS-copy-150x150.jpeg\")
<\/a><\/div>