posted
I am a 54 year old (post menopause-2 years since last menses),Caucasian, female. I live and work in New York City. I work as a therapist in a 3residential treatment facility (psychiatric hospital) for adolescents in Manhattan.
I was diagnosed with Lyme Disease by my MD on 4/30/2010. The results from Western Blot were only "reactive" on 41KD IGG. Also 5.75 on Epstein Barr. I have been previously diagnosed as having Chronic Fatigue Syndrome, Depression, after multiple rule-out examinations and evaluations (I was NOT ever tested for Lyme previous to April 2010). I have experienced prolong fatigue (more than 3 years), cognitive difficulties (memory loss, poor concentration), difficulty with sleeping (waking up @ every 45 minutes, night sweats, which were all assumed as resulting from menopause). I have had multiple medical evaluations (including stress, pulmonary, and echo tests; x-rays: knees, hips (severe migrating joint pain) and chest, as well as psychiatric and educational evaluations (LD testing) which were administered during the past 2-3 years in search for a diagnosis for prolonged fatigue/joint pain, depression.
I began taking doxycycline (100mg BID) on 4/30/2010) after my MD diagnosed Lyme. I do not know which lab my MD used for Lyme testing; however, will pursue that information.
My MD suspects that I have had Lyme for quite some time (3-4+ years??). I vaguely remember finding a tick on myself several years ago, possibly when I was living in Vermont) and did not think much about it at the time because as a child/adolescent I was exposed to ticks quite often (horses, dogs, and I have lived on farms and wooded areas).
I did have a rash about 3+ years ago on my arm and lower back (I do not have a history of having rashes) and did not seek treatment because at the time I did not think it was serious, nor did I associate it with Lyme Disease (hindsight can be quite informative!). And who knows what it was, at the time I thought it may be stress related.... I was completing my masters and my mother was in hospice for more thatn a year and died in 2007. My psychiatrist, as well as therapist, had given me a diagnosis of Major Depressive Disorder 2+ years ago. I began (January 2010) trials of Prozac( originally Prozac seemed to somewhat help relieve some of the physical symptoms, aches in pains in joints and hips), then Lexapro, after "giving up" and "in desperation" to try anything after my MD could not find "anything wrong" with me.....after Lexapro did not work I returned to Prozac, both of which did not help, except when I first started taking Prozac it seemed to give me some physical relief related to sever migrating joint pain. Since I was diagnosed with Lyme, after discussion with psychiatrist, I titrated off Prozac from 20mg to 10mg, for 1 week. At this time I NOT antidepressant medications. Also I received Heb B vaccinations in 2008 and the last 1/2009. In hindsight it seems that the worse fautigue started after the Hep B vaccinations. Also, came about again in June 2009 after traveling alone in Morroco for 17 days. 6-8 weeks after I returned from Morocco I had slight fever 102, and flu like symptoms. My MD did routine blood work, ALT was high, 41, had been living on Advil for 2+ years, and MD thought I had Hep A from travelings and eating shellfish in Morocco. Retested ALT and it was 28..normal range. Hep A results negative.
My MD had put me on 3 weeks 100mg Doxy, which would have ended 5/20/210. I have an appointment next Tues, 5/25th. Laswt week I called and asked MD to continue Doxy until I see her. She did.
2 weeks after starting Doxy felt much worse. Now feeling a bit better in my joints, but still have migrating pain, night sweats. Difficulty walking, heel pain, especially if I "overdo" it. meaning walking too much..
I have an appointment at NY Pres/Cornell with ID specialist on June 2nd. However after reading posts this may not be the best option. Any opinions about any of this would be helpful.
Trying to make list of questions to ask my MD for Tuesday's appointment. I.E. Like what lab did MD use. Have not really spoken to her about all of this in detail. She diagnosed me, put me on Doxy and we made the appointment for May 25th. Not sure the Doxy dosage is strong or long enough...sorry, I just have all this uncertainy and confusion regarding treatment and
Posts: 119 | From New York New York | Registered: May 2010
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posted
With your inconclusive test but positive symptoms, then a positive reaction to doxycycline, it sounds like it is likely Lyme Disease especially with the history of a tick bite. I would see an LLMD for proper diagnosis and treatment.
You also might want to look at the KPU threads here. Dr. K says 80% of those with Lyme have pyroluria/KPU. Read the article at www.drrandy.org (click on articles, then it's the first one) for more information on KPU. Also Google to see various symptom lists.
Your doxy dose is low. Usually LLMD's use double that dose.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I agree with Six. The doxy dose is way too low, not even enough for acute lyme--the phase when initially bitten. Doses of doxy for late stage lyme are 400-500 mg per day.
If I were you, I would cancel the appointment with the ID doc and go right to a lyme literate doctor--llmd--preferably one who is a member of ILADS--google for more info, they have a great website. You can be directed to an llmd in the seeking doctor section on this site.
And I would eat my hat if you don't have late stage lyme. Please, while you're trying to get on track, don't take anything with steroids or cortisone in it. These things are immunosupressant and will give lyme the opportunity to further devastate your body.
In addition, many lyme sufferers present with psychiatric symptoms first so that's in keeping with your clinical picture.
Good luck and feel free to send me a private message.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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dmc
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