posted
Hi. I was dx'ed with both Lyme Disease and Epstein-Barr virus concurrently last June ('09).
It hit me hard on a Monday evening with fever and body aches like I'd never experienced; I began vomiting Friday and couldn't stop. The ER doc hooked me up to a morphine drip and gave me a script for 10 days of doxycyline 'just in case'. My GP gave me a 14-day round again in August when a Western Blot result came back positive (after 2 negs).
I've tested negative for rheumotoid arthritis and Lupus, yet still have all the lovely features of this disease which I see you all are also well-acquainted with.
During a 12-minute (and very expensive) consultation, an infectious disease 'specialist' told me he was sure I was over the Lyme and any symptoms I 'might be' experiencing were most likely due to the Epstein-Barr - referring to blood test results that were 4 and 2 months old. He assured me I would be fine as long as I rested when I could. <bleh> That was last November.
A few months ago a rheumotologist concluded I have fibromyalgia, but I do not embrace that dx.
I've been managing symptoms via less conventional, more traditional options, like: nutritional changes, including cutting out MSG; yoga; and Teasel Root - along with OTC pain medications and Valerian tea for better sleeping.
I'm glad to have found this place - thank you!
~ liv
-------------------- "Yes, I'll have a Cosmopolitan... but please, hold the Lyme." Posts: 17 | From Maryland | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am glad you found this place too! It is such a life saver because the people here have been through what you have experienced including the ignorance of the medical community. Keep coming back!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Time to get after it now!! Let's find you a REAL doctor and get you some REAL medicine!
Lyme is serious business and you need to beat it out NOW!!
Rheumies and Inf Disease are totally clueless about Lyme. Glad you found this site!!
Hang with us and we'll help you get well!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Welcome. This site will be of tremendous help to you. The very best thing you can do is go to a LLMD (Lyme Literate Medical Doctor). This will make ALL the difference. Best of luck to you! Tammy P.S. See 'Under our Skin' if you haven't already.
Posts: 2238 | From East Coast | Registered: Jul 2010
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
If I had a nickel for every time an infectious disease doc said rest and you'll be fine, I could plant my lyme riddled body on a tropical island somewhere
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Welcome!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Liv:
On March 16th of this year the Pediatric Infectious Disease Specialist stated "I know Lyme and your daughter doesn't have Lyme Disease".
At this appt. he also indicated the new and increasing symptoms were physocamatic (sp?).
This MD is the one who was the lead co author of the NE Journal of Medicine article on chronic lyme syndrome back in 2006 time frame.
I point this out to only let you know how wrong the so called experts can be.
My daughter has Babesia and Lyme and this idiot couldn't connect the dots.
It started with a tick bite, flu like symptoms, fatigue, sleep agitation to name a few when we saw him first in early November) then the constant fevers, numbness, bone pain, foot pain, night sweats, breathing issues which developed over the next few months.
DON'T rely on the main stream MD's when it comes to Lyme and its co infections.
At the least read Dr. B's Advanced Topics in LYme Disease.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Quote: "During a 12-minute (and very expensive) consultation, an infectious disease 'specialist' told me he was sure I was over the Lyme."
Just goes to show that in the medical world, you often Don't 'get what you paid for'.
How can Anyone be "sure" that you're "over the Lyme" if we have yet to have any tests for active Lyme disease that are even in the 90-95% accuracy category??
BTW, a 10 & 14-day stint on doxycycline, esp. at only 100mg b.i.d., does not BEGIN to adequately treat Lyme... even in the early stages!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Thank you thank you thank you ~ for the warm welcome, the humor, and the information here and PM'd. You all are so cool.
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