LYME DISEASE
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I need help in Dallas
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by pjval, Jul 12, 2009
It's my year of "5"s.... I'm a 50 yr old woman, mother of 5, grandmother of 5;  I'm 5'4"  132 lbs. I walk 5 miles and jog 2 miles every day. I work out at the gym 3 days a week, bowl on a ladies team, and own my own business, a bridal boutique. I'm also health conscious and energetic; My hubby and I LOVE camping and are aware of ticks and take precautions. But last year we came home from a camping trip noticed behind my knee a small bump that felt like a hard spot in the middle. Thinking of ticks (we've had them before but they were really big and easily seen) he looked at it for me and using tweezers pulled a tiny piece of skin off my leg. He said he thought it was a sliver of wood from the picnic table.
Long story short:  I get the flu for the first time in 8 years that wipes me out. I recover but have no energy. I just turned 50 (missed my own birthday party because of the flu) so maybe it takes longer to recover now.  2 weeks later, still no energy. Have my yearly check up. Gained 5 lbs but everything is good. Blood tests are normal. Still tired and now having headaches and neck pain. month later back to dr with headaches and tell her about fatigue. Diagnosis: allergies and sinus infection. Neck pain is stress. I don't feel stressed but she says my body does. Amoxicillian for 10 days; singular and nose spray daily for allergies. Feeling better but still tired. 6 weeks later headaches return and more tired than ever. Dr does blood work, says I have hypothyroidism. Add synthroid to the list of meds. headaches don't go away and hips hurt when walking. haven't jogged in 3 months, no energy. Had a bout with intestinal pain and diareah that comes and goes. Dr. says I have IBS and possibly arthritis. Not unusual she says at my age and with my history of sports etc. Get a bone density test... my bones age is 41. So why do I have arthritis? schedule colonoscopy for later in the month.  few weeks later I see a dk pink ring on my forearm. then another near my armpit. My daughter was visiting so I call her into the room. I take off clothes and have rings on my inner thighs and buttocks. I walk into dr without calling demanding the nurse see me, no problem. I'm visibly upset, why is all this happening? Dr comes in excited.. LYMES rash, it 's the first case she's ever had so she calls in the other drs and nurse to see it. Glad I was able to entertain them.Lyme test comes back 3 days later posititive, 2 weeks of doxycycline (sp?). Finally I feel better yippee!  working out again and start jogging again. 5 weeks later pull a muscle in my leg. Damn. playing with my grandkids I pull a muscle in my shoulder. 2 weeks later my knees are hurting and my hips hurt again. Then my hands are swelling. My headaches are back worst than ever and I have chest pain. Dr. says I have hypertension, blood pressure is out the roof.. 170/99. Lyme test is negative this time, I'm cured of that thank God.  3 weeks later I'm diagnosed with fibromyalgia, more meds.  I'm convinced I have Lymes still but the dr says I don't. It doesn't make sense that a healthy, athletic and active 50 yr old gets all these ailments in an 7 month period does it?? I mean I can't walk without help in the morning. My knees, hips, shoulders and hands kill me. The streroids didn't help, in fact it made it worst. Now I'm having weakness in my legs. I can't play with my grandkids, I can't sleep but I'm exhausted. I can't even clean the house. I went to another dr on Friday with my history, he gave me anitdepressants. I left the perscription on his table and walked out.
PLEASE... does anyone know of a dr in Dallas that has experience with Lyme disease? I can't live like this and it's NOT depression.

Thanks, Pam
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Member Comments (15)
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by wonko, Jul 12, 2009
We have a member here who checks in once in awhile and is from Texas (though I'm not sure which part?).  Here is a link to her profile, perhaps if you leave her a note or send her a message she may be able to advise on an area doctor:

http://www.medhelp.org/personal_pages/user/723952

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by skarey, Jul 12, 2009
Pam,
  I am SOOO sorry you are feeling like this.  You definately need to find a LLMD (lyme literate Medical Dr).  These dr's beleive in chronic lyme and will do long term treatment (until symtoms are gone).  The lyme tests are not reliable.  Just because your last test was neg doesn't mean the lyme is gone.  You've had lyme and had the POS test and bulls eye rash.  A LLMD would begin treatment immediately and will test for co-infections as well.  

I have a list of LLMD's in TEXAS.  I will PM them to you.  Good luck!

Skarey
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by patsy10, Jul 12, 2009
Welcome. I'm not a doctor but your story sounds like textbook lyme that was not treated long enough.  Sadly, now you are a year into it so it will be even harder to treat.  Hopefully you will find a good doctor from the info skarey sent you.

Please keep us posted.
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by pjval, Jul 12, 2009
Thanks everyone. I know this is Lyme disease and for my dr. of several years to say it's depression... just doesn't make sense. My hubby found this site. This is so wrong to thing that I was diagnosed correctly but not treated correctly and now may suffer permanent damage? OMG. I feel so stupid but I looked it up in the medical journal and all it said was to treat with Doxy for 2 weeks and it is curable. I didn't look anywhere else. She should've known the continued symptoms. A healthy woman doesn't go from perfect, no pristine, health to a woman with multiple conditions and in constant pain. I lost a son at 8 months old to a misdiagnosis and to think it's happened again... I am beside myself in anger. I don't mean to lash out here but OMG. I will look into LLMD, thanks.
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by JackieCalifornia, Jul 12, 2009
So sorry to hear of your situation.  Sadly, you are in good company.

If I were in your shoes, I would NOT take any more steroids until your diagnosis is clear:  steroids are contraindicated in Lyme, because they suppress the immune system.  I'm not a medical person, and this is based solely on reading I have done.

Your ability to lay out your symptoms so clearly will be very helpful to your NEW doctor.

Above all, don't give up trying to get well:  we all get discouraged, we all get confused, but yank up the socks and keep going.  We're here when you need to vent or whatever.

Best wishes -- J.
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by pjval, Jul 12, 2009
Thank you wonko, EricaO lives just a few miles from me and I did send her a message... thanks!!!
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by FloraToadfoot, Jul 24, 2010
You sound just like me and I have recently been diagnosed with Lyme disease + co-infections of Q Fever and Rickettsia in South Africa.  I've been ill for 15  / 20 years and been wrongly diagnosed and treated until Feb 2010.  Am now on 2 x tetracyclines for 7 days, then 21 days for treatment of fatty liver. The tertacycline is changed every month to accommodate co-infections and also different stages of the bacterial growth. Start my 6th month of treatment on Monday  Have been told I have everything from MS to epilepsy for last 10 years.  Can't help you with a doctor but there are so many variations of treatment depending on which doctor you see.  My doctor is Lyme literate.  You can Google her and find lots of info about her work.  Dr Cecile Jadin is highly recognized around the world for her work on these infectious diseases.  Don't know for sure Lyme is curable but you can get it under control. Good luck and take care - Lyme is not for sissies.... !!
Pam Thomson
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by Lymiesue, Aug 10, 2010
Get on one of the several Lyme disease associations websites and look up doctors in your area.  I live in Maine and have had this disease for 10 years.  It was treat wrong and I will never be the same, but it can be managed.  Please remember that time is of the essence.  If you can't find a dr. in your area, call one in New England and see if they can give you a referral.  Good luck and take good care of yourself.  
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by CHollister, Jul 30, 2011
Curious if you ever found a dr in Dallas. I think my husband has LD as well. We have been told that it is possibly MS for 4 years now. Your feedback is greatly appreciated!