posted
Would anyone please share what your specific symptoms are and if you have flares please try to describe the symptoms or reactions you experience during a flare and how often you get flares and how long they last.
Please do not refer me to a list of Lyme symptoms, I have read that and I do have many of the symptoms and I also have a positive WB, so I know I have Lyme but I experience a very specific type of flare episode (for 12 years now, mis-diagnosed only as FM)and in all that time have not come across anyone who describes flare episodes like mine so I am just wondering if I may also have something else besides Lyme and co-infections (Bb, Babesia, Bartonella, etc).
My LLMD/NP just says flares are common.
Also, after 12 years of being misdiagnosed and being so ill, depressed, alone and broke I need to feel some kind of connection and support.
I know this is a long post and I apologize but here are my symptoms/flares:
Periods of intense pain deep in my large muscles groups, extreme fatigue, increased sinus activity, an extremely uncomfortable tightness and heaviness in my chest, pain in the lymph glands in my neck and sometimes pain in my ears, throat and jaws. When I am in a flare the pain I feel is like my body is swollen, or inflated like a balloon, with the air being the pain. The flares are completely disabling.
My flares can come and go in a day, can last for a few days or a week and often last for months on end. They do not cycle in 4 week periods.
In addition to my flares (when I am not in a flare), I also experience general, almost constant muscle pain, fatigue/lower than normal energy levels, pain in my feet, ankles, wrists, fingers, arms, back, neck, shoulders and legs, and my neck crackles.
When the flares last for a long period of time, I inevitably end up with a sinus or bronchial infection (most likely because I am not able to eat or take care of myself properly).
I go to a doctor and get an antibiotic. Within 5-10 days my flares are gone and I will remain flare free for several weeks. I once took 3 separate 10 day courses of antibiotics for a persistent sinus infection and remained flare free for 6 weeks after finishing the last round.
Occasionally, even without an antibiotic, I will be completely symptom free, no flares, no general pain and will have good energy. Typically this lasts for a day or two.
Thanks to anyone who responds.
Posts: 24 | From Cincinnati OH | Registered: Mar 2010
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posted
Are you on antibiotics all the time? My flares come with being on antibiotics... a by product of killing the disease. I get them in a cycle like all of us do, women usually get a flare every 4 weeks or so. I get different types, different levels of being bad. Some put me down for 4 days, others, I can at least work around or lay around. Not much help .... have you read up on how flares/herxing come and go when in treatment?
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I was only diagnosed with Lyme 2 months ago.
I have had my flare episodes for 12 years now. I actually feel better when I take an antibiotic (ones that I have taken in the past for a sinus or bronchial infection) and will come out of my flare mode for 2-6 weeks, depending on the # of rounds of antibiotics I have to take to clear up my infection.
I have read about the typical cycling period for Lyme bacteria. My flares do not cycle in 4 week periods. They can last a day, a week, or as long as 4 months.
I have read and do understand about herxing.
Thank you for responding. Even a response from people who say they do not have my type of flares or symptoms is helpful information. For 12 years I have been treated only for FM and my flare episodes did not match FM symptoms either so I am determined to find out what I have.
Posts: 24 | From Cincinnati OH | Registered: Mar 2010
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