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Thursday, June 26, 2008

ILADS and Lyme symptoms

I am concerned about lists of symptoms listed by ILADS and others associated with chronic Lyme disease. My sense is that these lists are misleading. Lyme doctors are already practicing outside the box of mainstream medicine. I fear that all inclusive lists of possible symptoms diminish the credibility of practitioners of this new paradigm. It provides an opening for critics who will say: those doctors think everyone has Lyme disease. If we look at the symptom list, it includes a huge percentage of patients who are treated in a primary care office, most of whom do not have Lyme disease. The Lyme symptoms listed with the ILADS guidelines include: fatigue, low grade fevers, night sweats, sore throat, swollen glands, stiff neck, migrating joint pains, stiffness, arthritis, muscle pain, chest pain and palpitations, abdominal pain, nausea, diarrhea, sleep disturbance, poor concentration and memory loss, irritability and mood swings, depression, back pain, blurred vision and eye pain, jaw pain, testicular and pelvic pain, tinnitus (ringing in the ears), vertigo, cranial nerve disturbance, headache, hotheadedness and dizziness. There are many causes for most of these symptoms. When doctors evaluate a patient they first ask for a chief complaint. If a patient has a sore throat and swollen glands one first thinks about viral pharyngitis or Strep infection. Doctors in training frequently hear the expression: When you hear hoof beats in Central Park (New York) you think of horses not zebras. When a physician suggest an unusual diagnosis based upon a common complaint he is said to be looking for zebras. I do not deny that these symptoms and many others may be seen in chronic Lyme patients, but such a list is misleading. Chronic Lyme is a multi-system disorder that presents in a predictable way with a clear cut pattern. Of course there are exceptions to every rule, but zebras should only be considered when other diagnoses have been excluded. As has been said regard to science: When all the likely explanations have been excluded that that which remains, no matter how unlikely must be the explanation. Chronic Lyme patients have: fatigue, cognitive changes, numbness and tingling and muscle, joint, tendon or ligament pain. This constellation of symptoms is reliable in my experience. Patients with a chief complaint of a primary Lyme syptom such as joint pain or numbness and tingling should have Lyme diseased moved up on the list of possible diagnoses.Many other symptoms may exist, but they should be in addition to the basic symptom complex. If the only complaint is depression or back pain for example, both listed by ILADS as Lyme symptoms, Lyme disease should not be considered except as a zebra.
ILADS states that these symptoms may present without objective markers. Based on my experience this is not true. I believe that an expanded list of objective markers shows some abnormalities virtually in 100% of cases. In fact, a complete absence of objective markers would lead me to doubt the diagnosis of Lyme disease.


dogdoc said...

Lymes is a "horse" in dogs- how do humans avoid exposure to the same vectors? Doesn't seem like it should be a "zebra" in another species. still looking for knee blog.

mb said...

This is a very well thought out argument for clarity in the community in regards to symptoms. However, from my personal experience and reading I must make this comment: What about the person who has a history of tick bites? What about the person who presents with sudden onset depression that is not situational - and who has a history of tick bites? What about the child who presents with bi-polar disease or ADHD - and has a history of tick bites? What about the asymptomatic patient with four significant bands on the Western blot and who lives in an endemic area? The problem is to my mind not that Lyme can mimic so many other diseases (and we can only test for anti-bodies) but rather, that doctors ARE NOT BEING TRAINED IN HOW TO SENSIBLY INCLUDE LYME IN THEIR DIFFERENTIAL DIAGNOSIS. I have dealt with this issue for twelve years now. My husband had terrible brain fog - undiagnosed by our physician in endemic Hudson River Valley - related to a tick bite he'd had four years before! Now here lies the rub-- how do we know that this was not a new tick bite? One never does. But it is common for neuro borreliosis to manifest later on in the disease. Our M.D. never considered Lyme in the differential when my husband became depressed and had a sore shoulder. After seeing another M.D. (who was Lyme aware) and undergoing an extra(heavy duty dose of doxy)he was free of the pain and the "fog".
I suppose I would conclude by saying that we must find a middle ground, but until the traditional medical body embraces the fact that the thousands of people around the world complaining of these symptoms are NOT suffering some form of mass delusion - and until the establishment starts training M.D's to be able to incorporate Lyme in the differential - WHEN WARRENTED - the situation will remain as it is. We are still in the midst of researching and understanding this spirochete - and it's myriad manefistations. Would that this situation did not exist - but it does.

dogdoc said...

What I don't understand is that is seems many people with out very severe involvement can be helped by simple antibiotics much easier than they can be tested or diagnosed in other ways. I know my most excellent LLMD had my Lymes pegged on clinical signs (the others dr's not a clue) and what do you know, I'm responding wonderfully to antibiotics (neuroborelliosis w/ numbness tingling in face, feet, hands, brain fog, lethargy, joint involvement, ect). Of course the intial pain of the antibiotics aside. If the tests for a disease aren't worth a darn and the disease is a bad one, how about response to therapy? Antibiotics are very benign in comparison to letting the Lyme go. Some patients like me might be easy and classic. We should never go missed. But if you as a dr suspect in a patient with brain fog and depression, what is the big deal in an antibiotic trial to help you collect clinical information in addition to the tests? Hey, if the patient herxes and then the signs get a lot better- your clinical suspicion just got a lot better. If zero herx or improvement, move onto greener diagnostic pastures. I agree with most excellent LLMD that most patients with the cognitive changes, fatigue, joint/connective tissue involvement, and specific neuro signs (tingling, numbness, facial nerve issues, ect) are going to end up having Lymes in the end. Many top LLMD's very much agree with this position. However, with any dz that affects as many systems as this, alternate presentations to the typical will likely occur. What's an antibiotic trial going to hurt as a diagnostic measure in comparison to missing this awful disease? I wouldn't hang my hat on it in a patient with nonspecific signs- but as part of the first months testing and work-up? Seems to me like it would add a lot of sensitivity to our diagnostics. I don't beleive a lot in lab testing, but I think a c6 peptide (with .1 as cut off) and igenex blot should be a cookbook type required test for every patient with psychological, joint, neuro, or fatigue signs. What have we got to lose? A lot of really sick people, thats what. If there were no contraindications in the patient, I'd add a 4 wk Amoxi and Biaxin or Minocycline trial. No, it wouldn't catch everyone... but between the lab tests and the antibiotics, I bet we would pick up many more patients now being misdiagnosed. I'm sure an LLMD would have a more accurate guesstimate on those numbers.

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Sylvia said...

As a chronic Lyme sufferer, not suffering anymore on medication, I use an extensive Lyme checklist when people come to me wondering if they too have Lyme disease. Go to and click on "the Basics." On the last several pages is a pretty good comprehensive checklist. Often the individual seeking information does have a broad range of symptoms that often started years earlier. For example, I had Bell's palsy more than ten years before I developed major cognitive and physical symptoms. Then I had odd symptoms that came and went shockingly quickly over a summer: Severe headache, violent feelings, noise sensitivity, severe eye pain, dyslexia, pleuro-pericarditis, and fever. Then I was put on an antibiotic for the fever and all the other stuff went away.

Three years later, I came down with late stage Lyme disease, which took control of my life. I was president of my neighborhood association and garden club at the time; I had four kids a husband and a busy life. All that changed. I dropped out of many things because I couldn't cognitively handle them. It was hard to climb stairs and simple things became difficult to do. It seemed like so many things started going wrong with me, from rash to pain, to Alzheimer's like symptoms, to inability to run or do aerobics that my life came to a grinding halt. I couldn't multitask, became disoriented, couldn't find my car, forgot my kids, couldn't make change, wrote the wrong date on my checks, (sometimes years wrong!). I had chest pain, eye floaters, bone pain, bladder problems, diarrhea, and my ears rang constantly. I was noise sensitive, couldn't make a decision on what to buy anyone for Christmas, felt like I stepped into a nightmare, and I LOOKED PERFECT! I still look at old photos and can't believe that is me looking so good, knowing how I felt inside. Lyme disease takes your life away. The inability to do work or hold a job is something that should be a heads up to any doctor.

Some of the things I look and listen for from individuals who come to me wondering if they have Lyme disease are relatively simple, especially if they've been dealing with it for a long time: Do they have good days and bad days? Is this interfering with their life? Do they have a number of odd symptoms? Was there a time, looking back, when their health became an issue and has seemed to be since then? Did their tendons start hurting? Were they unable to think in class? Were they napping all the time after school or work? Did they feel like what else health-wise could possibly come down the pike? Did they have headaches and sinus aches and tooth pain and stiff necks? Or some of those things? Do they have restless legs, especially in the evening? Does all their testing come back negative? Why negative? Because you are ruling out other things. If it's not this or that...think Lyme??? A comprehensive checklist helps clarify what a patient cannot tell the doctor, which is all the things that are coming and going inside. It's too hard to remember. The doctor doesn't have the time. How does something that happened four years ago relate to something that is happening now when it's a completely different symptom? These things complicate a Lyme diagnosis unless a checklist is used. The checklist clarifies the picture. My Lyme doctor says stiff neck, probably #1 symptom, fatigue #2.

Sylvia said...

One last comment: Maybe the 14 physicians I saw before I was diagnosed with late stage Lyme disease were thinking "zebras." Maybe that's why I spent seven years doctor shopping and desperate for help... without help.

Here are two examples of people who were just recently helped by me: A nurse who was out of work for nine months with a severe, severe headache. The problem for her was that no doctor could figure out the cause and it wasn't going away. So, okay, what is causing it? She lives near a Lyme hotspot. She is out of work because the degree of headache prevents her from holding a job. How many people have that one symptom? It turned out that she was positive for Lyme. She has been medicated and her headache is gone.

A few days ago a male college student diagnosed with epilepsy last year went through a checklist with me. He also had an eyelid that fluttered which he'd had for quite a number of years. I called him when I recently read that eye fluttering was a Lyme symptom. What we found out with the checklist was that he also had depression, depersonalization, bouts of anorexia, getting lost, confusion, headaches, and night sweats. When asked about hearing he said that it felt like he had wax in his ears, "Maybe I do have wax in my ears," he joked. He has a hand tremor, had a cough in high school so persistent that kids teased him about it, and he has trouble with insomnia at night and needing naps during the day. He can injure his knee joints, that can hurt for days, just getting up off the floor. He dismissed it, saying that his joints have been hurting him since puberty when he grew up too fast. Well, he's twenty now and his joints still hurt. He doesn't talk about it anymore, he said, "because that's just how I've been since I grew up." I didn't need to tell him that he might have Lyme disease because he could surmise it for himself. this coming week he is going to be tested by IGenex Lab in California for Lyme disease. He may not have it, but with a checklist like that I'm betting on the likelihood that he does.