About 9 months ago, I went to see an ENT for a persistent sore throat and hoarseness that hung around after a terrible cold. The ENT, who was also an allergist, put me on a 2-week regimen of extremely heavy doses of Prednisone, thinking it might be severe pharyngitis caused by an allergy. (Subsequent allergy tests ruled out an allergy.) I have not been the same since the day I started taking Prednisone (even though I tapered off and stopped the medication 2-3 weeks thereafter.)
In the 9 months since then, I have suffered from a series of bewildering and debiligating ailments and symptoms, including: dizziness, vertigo, and disequilibrium; joint pain in my wrists, ankles, and the joints where my ribs meet my breastbone; chest pain and heaviness (which sometimes causes shortness of breath); tingling and numbness in my lower legs, lower arms and fingers; lightheadedness, brain-fog and difficulty concentrating; audible gurgling in my throat and occasional uncomfortable swallowing; heart palpitations/PVCs; and overall malaise and weakness.
I have had an exhaustive battery of tests, e.g., brain MRI, neurological, gastrointestinal, pulmonary, orthopedic, neuro-ophthalmologic, neurotologic/vestibular, cardiology and several blood tests, including those for thyroid function. All tests were normal, except that the neurotologist's test revealed a 43% reduction in the vestibular/balance function in my left ear; and the orthopedist believed that my chest pain might be caused by costochondritis. Of course, neither of these diagnoses is inconsistent with chronic Lyme disease, and, in fact, could be caused by it.
One of the few tests I have not had thus far is for Lyme disease. I never thought to ask my doctors about Lyme disease, although I could be an obvious candidate for it, given my lifestyle before getting ill. I spent a lot of time outdoors, hiking, biking and walking in heavily wooded areas in the S.E. USA, and I have also been exposed to bedbugs/ticks on at least one occasion. I recall being bitten by various bugs/ticks/insects at various times during my woodsy lifestyle, but never paid too much attention to them. I never got that circular red rash that some people with Lyme disease get, but I understand that as few as 50% of people with Lyme disease get the rash.
What really set off alarm bells for me was reading an article that discussed how Lyme disease can lie dormant in some people (i.e., kept in check by the immune system), until it is triggered by trauma or IMMUNO-SUPPRESSIVE medication, such as Prednisone. As I mentioned, I was perfectly normal until the day I started taking the Prednisone given to me by my ENT/allergist.
Is it worth investigating the possibility of Lyme disease with my doctor? What tests are there for Lyme disease, and how accurate are they? What's the prognosis for those that are diagnosed and treated months/years after becoming symptomatic? Thanks in advice for your advice.
You clearly have been through a comprehensive workup already. Assume all the tests have thus far been non-revealing, testing for Lyme is not a bad idea. Lyme disease can indeed cause some of the symptoms you are describing.
The ELISA test is currently used as an initial test. Because it can have false positives, the Western Blot is then used for confirmatory purposes. The sensitivty of the test is about 90 percent.
As for prognosis, it would depend on what stage of Lyme disease is present. Most cases can be treated with appropriate antibiotics.
This option can be discussed with your personal physician.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
"In the 9 months since then, I have suffered from a series of bewildering and debiligating ailments and symptoms, including: dizziness, vertigo, and disequilibrium; joint pain in my wrists, ankles, and the joints where my ribs meet my breastbone; chest pain and heaviness (which sometimes causes shortness of breath); tingling and numbness in my lower legs, lower arms and fingers; lightheadedness, brain-fog and difficulty concentrating; audible gurgling in my throat and occasional uncomfortable swallowing; heart palpitations/PVCs; and overall malaise and weakness."
If your test for Lyme disease is negative, then you may want to get it repeated (often they report false negatives). In addition, you share many of the same symptoms I have. I was diagnosed with CFIDS last year... you may want to talk to your physician about CFIDS or fibromyalgia after he/she has tested you for everything else.
Oh gosh!!! Wo! There is nothing reliable about the test for lyme disease. I can say this only because you have no idea how many people have had the bullseye rash, go to the doctors and get a negative test result. Just like syphillis was, it is now the disease most misdiagnosed only because it needs to be based on your symptoms, not the lousy blood test.
Ticks are in related to spider and everyone knows that if a spider bites you, it is best to treat it with antibiotics. Unfortunately, there are now children in my area that will not return to school because of the IV in their arms. Wheelchairs and job loss are more and more in my area of Berks County. Look at lyme disease very closely. Also, look at what happened with people with syphillis many years ago. Instead of getting antibiotics, they were put into mental institutions and left to die. What they really needed was antibiotics. Let me know how you are making out. AGain, there is nothing farther than the truth of a blood test for lyme disease being 90% accurate. Even the Center for Disease Control states on their website that the test could be negative even if you are infected. They say 2 to 6 weeks you could be negative after the bite (if you even know you were bitten) but it took 6 months for me to get a positive. At that point, I was barely walking. Once on antibiotics, my world was enjoyable again!
I'm no doctor, but from what I've been going through and read it sounds like Lyme to me. I was going from doctor to doctor for months trying to get a diagnosis and finally found a Lyme Specialist in CT that recognized the symptoms. I have been on Tetracycline for 3 weeks now and am feeling worse which is consistent with the Herxheimer effect. I have had 5 or 6 antibody tests for Lyme and a Western Blot test all of which came back negative. It's amazing how many doctors don't recognize the symptoms and are unaware of the unreliability of Lyme tests.. especially in CT where there have been the most documented cases of Lyme per capita.
I also had problems when taking steroids. I was put on Methylprednisolone twice over the summer for back pain and had a flare up of symptoms both times. I didn't know there was a connection between the steroids and Lyme until I did some research.
Over the past 5 months, I have had a lot of the same symptoms as you: dizziness, vertigo, and disequilibrium; joint pain in my wrists, ankles, and the joints where my ribs meet my breastbone; chest pain; tingling, numbness and pain in my lower arms and fingers; lightheadedness, brain-fog and difficulty concentrating; heart palpitations; and overall malaise and weakness. I have also had arm weakness; severe back pain; sore throat; facial numbness; jaw pain; muscle aches; stiff/painful neck; weird pains in the head; tremors. The symptoms seem to come and go.. I'll wake up fine and a couple hours later I'll feel horrible or vice-versa. The specialist I saw had me do a special lyme test through Igenex (http://igenex.com/) for which I haven't received results yet. I will go back to the specialist next week to get the results of the test and decide if the antibiotics are working.
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