AboutCarol Expertise I can answer questions about Lyme disease and recommend websites where one can find good, up-to-date information. I can also tell you how to find a Lyme specialist which is critical if you or anyone you know suspects that he or she may have Lyme disease. I can, also, provide you with a symptoms list.
Experience I suffered for 2 years with a bad case of neurological Lyme disease & finished a 37-month course of antibiotics in March, 2007. I went undiagnosed for 2 years, & saw a total of 14 various doctors and 'ologists. I attended a two-day Lyme conference in the spring of 2005 and I keep myself current on the topic of Lyme disease.
I quickly learned that YOU CAN HAVE A FLAMING CASE OF LYME DISEASE AND STILL HAVE NEGATIVE TEST RESULTS! It is essential for anyone who suspects that he/she may have Lyme disease to be tested for the co-infections that can occur with it. Only a Lyme specialist can perform these tests and make these diagnoses.
Question Hello, I started at the beginning of August to feel really under the weather. I started with joint pains, headache, upset stomach and chills, after a about a week then I broke out in a hive like rash on buttocks and leg area. The rash came and went for days, worse after showering. Then I begin to burn throughout my body and skin sensitivity so much that I could not sleep. I have had joint stiffness, spine and bone pain, pain in stomach and pelvic area, numbness, tingling, twitching of face and limbs, muscle spasms, ringing in ears, floating spots in eyes, shortness of breath and tightness of chest, face heartbeat, insomnia, indigestion. Went to ER on two different occasions for these symptoms, and ran test, Dr. ran a Elisa test for lyme disease due to various symptoms and it came back negative. Went back to Dr. and now he is going to have the western blot test done, he really suspects lyme. Already started on Doxy, been on for five days. What are your thoughts on these symptoms and is the western blot a more accurate test.
Answer Hi, Jo Ann....
My thoughts on your symptoms tell me that you have neurological Lyme disease which is what I had. I had most of the symptoms you listed and, too, was a frequent flyer at the ER. I can only describe my symptoms and suffering for two years as horrifying. I was eventually labeled as a nutcase and heard more lectures on stress than I'd care to count.
Let me tell you a little about the tests and the doxy. The tests for Lyme are very unreliable. Many of the Lyme specialists are trying to get the Elisa off the market. The WB is only 65% accurate which leaves a gaping 35% for false negatives.
It also depends on what lab the blood sample is sent to. Most Lyme specialists use Igenex lab in CA. (see www.igenex.com) They are most proficient at processing these tests. But even at the best of labs, Lyme can evade detection in both blood AND spinal fluid. Lyme is ultimately a clinical diagnosis made by bite history if the patient recalls one and history of symptoms.
The doxycycline used to treat neurological Lyme is like shooting a battleship with a slingshot. It may relieve some of the symptoms temporarily but it's just not enough to get the Lyme down to levels where your own immune system can control it. And, you're right, you really never get rid of it.
Let me give you my list of antibiotics so you can see this is not an easy fix: 8 weeks of IV Rocephin, over a year of Zithromax and Flagyl, about 200 Bicillin shots, Rifampin, Biaxin, Ceftin and Minocycline, all over the course of 37 months. I was off for 6 months and just relapsed last week ending up in the ER because I thought I had had a heart attack. After some other neuro symptoms appeared, I had no doubt it was Lyme returning so now, I'm back a combination of Doxy and Zithromax. I contacted my Lyme specialist and he immediately phoned in prescriptions. All of my heart tests were normal.
Then, there's the issue of the co-infections that often occur with Lyme. They share many of Lyme's symptoms BUT they don't all respond to the same antibiotics. Some are bacterial and some are parasitic and it takes a myriad of antibiotics to get rid of them. Doctors, including those at the best of hospitals and even infectious disease specialists, know nothing about these. It takes a Lyme specialist to test for and treat these infections.
If I were you, I'd find a Lyme specialist ASAP. Lyme specialists will treat you regardless of your test results because they know the unreliability of the tests. To find a Lyme specialist, go to www.LymeNet.org and register. Click on Flash Discussion and then on Seeking A Doctor. Post there with your city and state and someone will email you privately. There is a policy not to post doctors' names on the site due to privacy issues. You will see LLMD a lot on the site and that stands for Lyme-literate MD. They are few and far between so be prepared to travel if you find one. I drive 2 1/2 hours to see my doctor and don’t know where I would be without him.
Well, good luck to you and please let me know if you need anything else.
