posted
Hi everyone. I'm looking for a Lyme-literate dr in the CT area. I've seen a few, but have come to dead-ends in terms of treatment. I'm a 27 year old female who has had Lyme for 5 years. I'll explain my situation in a little more detail, as hopefully someone may also know of a specialist that would best fit my condition. I'm sorry if this is long. Lyme things tend to be that way.
2006- strange symptoms, hair falling out, migraines, lack of energy, knees "burned" when stressed out, mood swings- no diagnosis for a year- Lyme tests negative
2007- had chronic yeast/bacterial infections- when treated with diflucan, had peripheral muscle "twisting"/chemical burning in my legs. Went for a test, tested positive for HME ehrlichiosis. Lyme test was negative- started doxy treatment and it turned positive a week later (Since I live in CT, but had visited NC in 2006, doctors think I contracted Lyme that summer due to HME being in southern ticks more)- symptoms never resolved
2008- Went to a Dr. P in CT for additional treatment. Was treated with all the oral antibiotics available for Lyme. Also tested positive for bartonella. Stopped treatment when liver functions were too high. Symptoms improved, but never resolved. Treatments stopped causing herximers, and there was no more improvement.
2009-present- "Toughed through it"- intermittently saw an infectious disease Dr. S- he would retest me, but was reluctant for any more treatment, since he believes my condition is a neurological one due to hyperflexia in my legs. Neurologist had no answers.
I have toughed it out for five years, but each year, it seems my symptoms are getting worse, like it is a cumulative, damaging effect. In the past 6 months, they have gotten to an alarming point for me, and I feel I need to try and seek treatment again. I think they are mainly neurological in nature.
Symptoms: -Weakness -Disproportionate fatigue (not sleepiness) to the activity done -Overall body stiffness -Neck pain/stiffness- can lead to migraines and vomiting -Tingling in hands and feet (also burning in feet) -Leg/lower back pain/burning (feeling a need to "flex" the muscles all the time) -Inability to stand/walk for long periods -Unexplained "uniform" bone decalcification in my teeth -Doing a "normal" amount of activity for a few days causes me to get these "mini-colds" that last 2 or 3 days from being run-down
Cognitive issues have begun to manifest for the first time, which is what alarmed me the most. Here are those symptoms: -Lack of ability to "absorb" new information readily and remember it -Forgetting how to spell words -Inability to recall words in conversation- "on the tip of the tongue" feeling -Lack of clarity/forgetting details about things that happened in the recent past -Takes longer to "process" mental tasks- things that I used to do quickly now require longer periods and much more concentration -Lack of attentiveness -Potential hearing? changes- the type where you hear what someone is saying, but you have trouble with the clarity/understanding what is said
I currently have Aetna insurance, but will be losing that in a month. I'm in a very problematic situation as I cannot work at all due to the symptoms. If a dr list can be sent to me, please do so regardless of the insurance or cost. I would like to just get an idea of what is available to me. Also, I'm willing to commute to a good dr in NY or MA or RI if necessary.
Thank you so much for your time. Hopefully I will find some treatment or answers.
Posts: 36 | From Connecticut | Registered: Jun 2012
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Pm sent
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
also sent pm
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I've received all the PMs. Thank you so much for the input! I will look into a few of the drs further and let you know how it goes.
Posts: 36 | From Connecticut | Registered: Jun 2012
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