I've been having neurologicial symptoms since I got pregnant with my first child. It started out as a visual issue but has progressed into lots of ticks, seizures, weird movements in my lips, weird sensations like water dropping down my legs, numbness, inability to coordinate my vision, chest pain with tachycardia. Now I should mention I have had joint issues, neck stiffness, bloody stools peroidically, chronic yeast issues, and sleep issues for many years.
I've seen two eyes doctors, a neurologist, a cardiologist, GI specialist, infectious disease specialists. i have had an EEG, EMG, EKG, CT scan, blood work for lyme disease specific anti-bodies. All my tests have come back normal. The cardiologist says my heart is healthy but responding to a stress. He did say I had a lot of extra beats. The neurologist is calling it a constant migraine without a headache until i get worse, the infectious disease guy says I am not fighting an infection but thought it could be MS. The GI guy says he saw nothing.
I really thought it was lyme disease. I had a lot of tick exposure in childhood and once had the characteristic rash. I have most of the symptoms too. However the infectious disease guy who only tested me once for lyme says no its definitely not that......based on the negative test and the fact that my blood work doesn't show any signs of fighting an infection. So my question is could it be late stage lyme disease, that I am not fighting anymore because its been 15 years since I was infected. I don't know if the blood work would show I was fighting it.
I live in Canada where we don't have any doctors that are particularly knowledgeable about Lyme. I could travel to the US to see a specialist....but if I am not fighting an infection of any sort I am not sure it is worth it. I am really tired of going to doctors at this point and feeling quite hopeless. Its humilating seeing doctors that think its all in your head....or those that say we believe you have something but not something in my speciality. I lost my job because I called off too much after having seizures. I could not take sick leave because I don't have a diagnosis. Where would you look next or would you give it up and try to live with it?
If you are trying to rule out Lyme disease, you should be aware of the situation of opposing medical opinions about how to test, diagnose, and treat Lyme. From the Columbia University Lyme and Tick-Borne Diseases Research center:
"The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.
Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.
Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue."
So while knowledge of Lyme in the US may be better than in Canada, it is still often a very difficult road for a patient with late stage Lyme.
It is very common for late-stage patients to be plagued by debilitating symptoms but to have very normal medical tests.
I saw about 8 doctors (varying specialties) that all strongly denied that I could have it, and my tests were negative for a long time. I finally found a doctor who practices the broader definitions for diagnosing who put me on antibiotics, to which I had an obvious response. It has taken a long time, but I am getting better.
There is a Lyme community here on MedHelp, feel free to stop by.
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