I am 41 years old, live in Connecticut, and prior to 3 months ago I was very healthy. I've been sick for three months, and am seeking advice as to what the problem might be.
In the beginning of May I woke up one morning with what felt like a mild flu (body aches, fatigue, low grade fever). Even though I did not feel good, I was still able to work. After a few days I noticed a red round rash on my ankle which was approximately 3 inches in diameter. I visited my family doctor who quickly diagnosed Lyme Disease, and gave my a 30 day prescription of Doxycycline (100 mg twice a day). I took the Doxy for the entire month of May, but did not get my better. In fact, several times during I actually got much worse. My family doctor was stumped, but a Naturopath I visited said this was a herx reaction. My family doctor had a Western Blot Lyme test performed, and it came back "non reactive".
So fast forward to June...I still didn't feel well but was able to work. During the 2nd weekend of June I spend an entire day cutting bushes at my parents beach cottage, and and week later I pulled a tiny tick off my calf. A week after that I got really sick...massive body aches, massive fatigue, massive muscle weakness, but no fever. I went back to my family doctor, who figured that I got re-infected, and put me back on Doxy. Two weeks later I had no change in my symptoms, and I was referred to an Infectious Disease Specialist. The IDS ran a blood work for Lyme, several co-infections, and lots of other potential culprits. All tests came back negative, and my blood showed not signs of autoimmune disorders, infection, or cancer. I pushed the fact that this all started with a red rash three months ago, and she said I had no bands on the Western Blot test and that even though I had the symptoms of a full blown case of Lyme she would expect to see at least one or two reactive bands. The IDS decided to check for EBV (results not back yet), but other than that she says there is not much more she can do for me. She suspects I have fibromyalgia.
Do anyone have an thoughts as to the root cause of my symptoms (body aches, muscle weakness, and fatigue)? I've missed 5 weeks of work.
Many Thanks, DFG
Posts: 4 | From Connecticut | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It sounds like the root cause is Lyme Disease. A bullseye rash is diagostic of Lyme without testing!!!
The IDSA (infectious disease docs) just got investigated by the CT attorney general for anti-trust violations on their Lyme guidelines. They have to rewrite them.
You want to be treated by ILADS guidelines (www.ilads.org).
You need to find a doctor near you who follows these guidelines ASAP before it gets worse. Please post in seeking doctors and someone will send you the names of doctors near you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Unfortunately you are experiencing first hand the difference between a doc who relies solely on lab tests (I.D. ducks) and a doc who relies on clinical diagnosis (ILADS doc).
Hubby never knew he was bitten by a tick and had no rash. It took him over 2 years to get diagnosed. He is seronegative -- on only 1 of probably 20 different Lyme tests in the last 7 years he tested positive for band 41 once -- but he did have a positive PCR test once and has many other abnormal lab tests.
These tests are ones an ID doc does not even know to test for -- SPECT scan, CD57, C4a, Babesia and Bartonella bloodslide etc etc.
Ticks carry many other diseases besides Lyme disease. Since you have been bitten twice it is highly probable that you not only have Lyme but another coinfection as well.
Also, the doxycycline you were given was not at a high enough dose to kill the Lyme. The antibiotic may actually have caused the negative test result as well. But an I.D. doc would probably not know that.
Please post in seeking a doctor and find a specialist in Lyme and tickborne diseases.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
You have lyme but you also have coinfections, most likely babesia. If you can tolerate abx, you need to see an LLMD (ask on seeking a doctor) and be treated for babesia for a few months and then retreated for the lyme, or treated for both simultaneously.
Babesia is epidemic in Connecticut now and coinfected ticks are common as well.
Posts: 2276 | From united states | Registered: Jun 2004
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