How Will I Know If I Have Lyme Disease?

Jul 24, 2024

Lyme Disease. The Great Imitator. Unless you found a tick on your body, you might not even know you were infected!

Fortunately, a Medical Detective like me can find clues that you’ve got Lyme even without a blood test. How? There are classic signs and symptoms that are specific to the infection, and help differentiate it from other chronic fatiguing, musculoskeletal, and/or neuropsychiatric illnesses. I listened to these symptoms every day for decades from my 13,000 chronically ill patients, and then decided to create a personalized questionnaire to capture the full scope of their symptoms; trying to remember them all, including the frequency and intensity, would otherwise have been a daunting task, not to mention a time-intensive one for a busy physician! And since I am slightly OC and don’t ever want to miss anything, the beauty of this questionnaire is that it ensures I am capturing the broad range of Lyme symptoms, not to mention asking other questions which help me suspect whether someone might also have a parasitic infection, Babesia, making their symptoms worse.

I developed this questionnaire for my first book (published in 2014) and have updated it since. I hope you find it helpful. You can use this questionnaire with confidence, giving you a solid pre-test probability of whether you suffer from chronic Lyme disease, or not.

The full study proving the accuracy of the questionnaire can be found in the International Journal of General Medicine published in 2017. Let’s get started.

The Medical Detective’s Lyme/MSIDS Questionnaire

Before you start:

All of the points on the list in Section 1 are symptoms that can be seen with Lyme disease. They are not just specific to Lyme, and can be found in many other diseases as well.

Sections 2 and 3 ask about signs and symptom complexes most associated with Lyme and MSIDS (Multiple Systemic Infectious Disease Syndrome—much more on that to come), which I have compiled after examining thousands of patients in my practice over the years.

Section 4 is based on 2 of the 4 questions in the Healthy Days Core Module used by the CDC to track population trends nationally and identify healthcare disparities. It will help you identify the frequency of your physical and mental health problems in the previous month.

Think about how you’ve been feeling over the previous month and how often you’ve been bothered by any of the following problems. Then answer the following questions as honestly as possible, with symptom frequency and/or severity. (When we validated the questionnaire, both ways of asking the questions were able to determine the likelihood of Lyme and associated diseases.)

SECTION 1. SYMPTOM FREQUENCY AND/OR SEVERITY

SCORE:
0 - Never/Not applicable
1 - Sometimes (or mild symptoms)
2 - Most of the time (or moderate symptoms)
3 - All the time (or severe symptoms)

1. Unexplained fevers, sweats, chills, or flushing

2. Unexplained weight change; loss or gain

3. Fatigue, tiredness

4. Unexplained hair loss

5. Swollen glands

6. Sore throat

7. Testicular or pelvic pain

8. Unexplained menstrual irregularity

9. Unexplained breast milk production; breast pain

10. Irritable bladder or bladder dysfunction

11. Sexual dysfunction or loss of libido

12. Upset stomach

13. Change in bowel function (constipation or diarrhea)

14. Chest pain or rib soreness

15. Shortness of breath or cough

16. Heart palpitations, pulse skips, heart block

17. History of a heart murmur or valve prolapse

18. Joint pain or swelling

19. Stiffness of the neck or back

20. Muscle pain or cramps

21. Twitching of the face or other muscles

22. Headaches

23. Neck cracks or neck stiffness

24. Tingling, numbness, burning, or stabbing sensations

25. Facial paralysis (Bell’s palsy)

26. Eyes/vision: double, blurry

27. Ears/hearing: buzzing, ringing, ear pain

28. Increased motion sickness, vertigo

29. Lightheadedness, poor balance, difficulty walking

30. Tremors

31. Confusion, difficulty thinking

32. Difficulty with concentration or reading

33. Forgetfulness, poor short- term memory

34. Disorientation: getting lost; going to wrong places

35. Difficulty with speech or writing

36. Mood swings, irritability, depression

37. Disturbed sleep: too much, too little, early awakening

38. Exaggerated symptoms or worse hangover from alcohol

Tally your answers and record your score. Score: ___________

SECTION 2. MOST COMMON LYME SYMPTOMS

SCORE:
If you rated a 3 for all the following symptoms in section 1, give yourself 5 additional points:

• Fatigue
• Forgetfulness, poor short- term memory
• Joint pain or swelling
• Tingling, numbness, burning, or stabbing sensations
• Disturbed sleep: too much, too little, early awakening

Score: ___________

SECTION 3. LYME INCIDENCE

SCORE:
Circle the points for each of the following statements you agree with:

1. You’ve had a tick bite with no rash or flulike symptoms. 3 points

2. You’ve had a tick bite, an erythema migrans (bullseye), or an undefined rash, followed by flulike symptoms. 5 points

3. You live in what is considered a Lyme-endemic area. 2 points

4. You have a family member who has been diagnosed with Lyme and/or other tick-borne infections. 1 point

5. You experience migratory muscle pain. 4 points

6. You experience migratory joint pain. 4 points

7. You experience tingling/burning/numbness that migrates and/or comes and goes. 4 points

8. You’ve received a prior diagnosis of chronic fatigue syndrome or fibromyalgia. 3 points

9. You’ve received a prior diagnosis of a specific autoimmune disorder (lupus, MS, or rheumatoid arthritis), or of a nonspecific autoimmune disorder. 3 points

10. You’ve had a positive Lyme test, such as an immunofluorescent assay (IFA), ELISA, Western blot, PCR, lymphocyte transformation tests (LTT and/ or ELISPOT), and/or borrelia culture. 5 points

Score: ___________

SECTION 4. OVERALL HEALTH SCORE

1. Thinking about your overall physical health, for how many of the past 30 days was your physical health not good?

SCORE:

Give yourself the following points based on the total number of days:

0–5 days = 1 point
6–12 days = 2 points
13–20 days = 3 points
21–30 days = 4 points

Score: ___________

2. Thinking about your overall mental health, for how many of the past 30 days was your mental health not good?

SCORE:

Give yourself the following points based on the total number of days:

0–5 days = 1 point
6–12 days = 2 points
13–20 days = 3 points
21–30 days = 4 points

Score: ___________

TOTAL SCORING

Record your total scores for each section and add them together for your final score:

*Under 25                               You are not likely to have a tickborne disorder.
*Between 25-44                      It is possible you have a tickborne disorder.
*Between 45-62                      It is probable you have a tickborne disorder.
*63 or more                            There is a high probability of a tickborne disorder.

*Anyone scoring over 25 should see a healthcare provider for further evaluation. The higher your score, the more urgently you should get evaluated. I can tell you that verified Lyme patients at different stages of treatment scored an average of 59. An online survey of people who self-reported “suffering Lyme now”scored, on average, 89.

[Image by TeroVesalainen from Pixabay.com]

Six More Classic Lyme Disease Signs to Watch For

(I wrote about these symptoms in the previous post, but here’s a refresher.)

1. You have more than one symptom.

2. You have good days and bad days. A hallmark of Lyme disease is that the symptoms tend to come and go, without you doing anything differently to bring on the symptoms, which can be very confusing.

3. The pain changes and moves around the body. Muscle and joint pain, as well as the tingling, numbness, stabbing, and burning sensations (otherwise known as neuropathy) not only tend to come and go, but they are often migratory. For example, you have joint pain in your knees on Monday, pain in your shoulders on Thursday, and pain in your ankles on Saturday. The same symptoms can happen with Lyme neuropathy, where the bacteria that have affected your nerves cause the tingling, numbness, stabbing and burning sensations to migrate to different areas. Lyme disease is the only disorder known in medicine to cause migratory nerve pain, so if you suffer from this particular symptom, it is highly likely that you suffer from Lyme! Since many of our patients also have an overlapping co-infection with different Bartonella species, if you happen to suffer from particularly severe neuropathic symptoms, Bartonella should be suspected along with Lyme disease.

4. If you're a woman, your symptoms worsen right before, during, or after your menstrual cycle. Lyme disease symptoms are known to change with fluctuating levels of estrogen and progesterone.

5. Your symptoms improve when you're taking medication for other ailments. Patients taking antibiotics for an unrelated problem (such as upper respiratory or urinary tract infection) will often report that their symptoms are much better while taking the antibiotic, and worsen when the antibiotic is stopped. Conversely, some individuals feel much worse on antibiotics, where all of their symptoms are intensified. This is called a Jarish-Herxheimer reaction, where the Lyme bacteria being killed off temporarily worsen the underlying symptoms.

6. Blood tests have confirmed a Lyme diagnosis.

More on testing in the next few Substacks.

Information about Validation for This Questionnaire

The original version of the Lyme/MSIDS Questionnaire was developed by Dr Joseph Burrascano years prior, after he took histories from his chronic Lyme patients. I then took the questionnaire and divided into 4 parts, asking questions about the frequency and severity of each symptom, while also capturing essential information on whether patients lived in Lyme endemic areas, had been bit by ticks, had EM rashes, asking whether their pain was migratory (a hallmark symptom of chronic Lyme disease), as well as reviewing the number of healthy mental and physical days they had in the past month.

The validation study for the Horowitz MSIDS Questionnaire (HMQ), proving that it is quite accurate, can be found below. It was done in 2017, and validated among 1,600 individuals in three medical practices, who were both healthy and sick, i.e., suffering from chronic Lyme disease.

Empirical Validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for Suspected Lyme Disease. Maryalice Citera*, Ph.D., Phyllis R. Freeman2, Ph.D., Richard I. Horowitz2, M.D., International Journal of General Medicine 2017:10 249–273http://www.ncbi.nlm.nih.gov/pubmed/28919803
https://www.dovepress.com/empirical-validation-of-the-horowitz-multiple-systemic-infectious-dise-peer-reviewed-fulltext-article-IJGM

The results of a detailed statistical validation study by 2 Ph.D. psychologists at the State University of New Paltz showed that the Horowitz MSIDS Questionnaire (HMQ) showed convergent and divergent construct validity, as well as predictive validity. What does this mean? We can accurately classify the Lyme Status of an individual using the HMQ with an 87% accuracy. Compare that to standard two-tiered testing (STTT) using an ELISA and Western blot, which has an accuracy of about a coin flip i.e., 50%.

The questionnaire can be accessed and downloaded from our website: https://cangetbetter.com/

Go under the Symptoms tab and click on the tab to download the form:
https://mailchi.mp/8e5ccb1a9297/lyme-questionnaire

Then fill it out and give it to your healthcare provider if you scored over 25 on the questionnaire and suffer from a chronic fatiguing, musculoskeletal, cardiovascular, neuropsychiatric illness. We will discuss in the next few Substacks the testing that is available to confirm a clinical diagnosis of chronic Lyme disease/PTLDS.