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New here...help me understand my test results...and ? new symptoms

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Posted 12/22/2009 2:12 AM (GMT 0)
Hi everyone!

Sorry if this gets a little long...I can be wordy at times blush

In June '08 I had a very high fever, stiff neck, horrible headache, body aches. I swore I had meningitis. I never had a tick bite or bullseye rash. (We have deer in our backyard) My lyme # was 0.29=negative.  I was put on amoxicillin for 10 days and headed to VA for vacation. (I am from MA)

about a week later, I developed Bells Palsy, went to the ER in VA and the MD gave me prednisone. I had told him my whole story about the fever, stiff neck, neg lyme test etc.

After I got home, 3 wks after my initial fever, I went back to the NP because the bells palsy didn't improve and my lyme was positive. IgG by WB neg, IgM by WB Pos, Abs Tot 2.30 (ref range 0-1.2) The NP put me on 11 more days of amoxicillin. I expressed my concern re: the lapse in time from the inital 10 day treatment and was reassured it would be OK. 24 hrs on the amox and my bells palsy improved significantly.

In Sept '09 I developed numbness in my leg. Not so bad that it affected my ability to walk but it was annoying, but not painful. It progressed to my arm, less numb and then to the other arm and then barely noticiable in my other leg. The whole thing lasted about a week. I never went to the NP.


In Oct '09, the numbness returned and I went to the NP and she tested me for a variety of things including another lyme. This time, IgG was neg, IgM was equivocal, abs tot 1.25 (sl elevated). I didn't know these numbers when she called my telling me that my blood work showed an old infection and my other labs were normal. Are these labs consistent with chronic/latent lyme infection?

I am having an MRI next week of my brain and spine and I have an appt with a neurologist the week after the MRI.  My other symptoms...cold feeling in my legs, my brain feels like it's in a fog, I joke that I have adult ADD because I have difficulty concentrating, I have a terrible memory. I am 33 yrs old and my mind feels older.

I am afraid that I have MS, but I am wondering if this is all lyme related confused

What do you think?

BTW, I am a neonatal nurse...all this adult stuff is greek to me wink

Posted 12/22/2009 4:00 AM (GMT 0)
Hi NurseKim,

Welcome to the forum! I'm so sorry you have been through this and have been bounced around from doctor to doctor. First, I want to say that 30 days of antibiotics for a new infection of Lyme Disease is not enough. I bet that your doctor probably didn't give you a high enough dose either. With all of your symptoms, Bells Palsy and a positive Lyme test, I'm sure that you probably still have some Lyme bacteria left in your body. You need to find a Lyme Literate Medical Doctor(LLMD). Most regular doctors don't know enough about Lyme Disease or how to treat it and most follow the IDSA guidelines. I will give you some information so that you can educate yourself with this disease. It is extremely important though, that you find an LLMD before your symptoms get worse.

Here is an explanation on dosaging of antibiotics:

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

Here is a site dedicated to Lyme Disease, written by a group of Lyme
Literate Doctors:

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Please read this site so that you can get yourself educated. You need to be your own advocate with this disease. I know this is very overwhelming but we are here for you:)

Here is some information to help you find a Lyme Literate Medical Doctor:

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker at:
[email protected] 

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease. 

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The
ILADS site is a great place to read to get you started on your Lyme journey. 
www.ilads.org/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.
Posted 12/22/2009 4:05 AM (GMT 0)
You will also want to get checked for co-infections. Not only do ticks carry Lyme, but they can also carry co-infections too. The names of the co-infections to get tested for are: Bartonella, Babesiosis, mycoplasma and ehrlichiosis.

Babesia could have caused your fever.
Posted 12/22/2009 4:09 AM (GMT 0)
One more thing....I was told by a good friend on these forums, that has MS and used to be a Moderator, that you don't usually run fever with MS.
Posted 12/22/2009 5:22 AM (GMT 0)
"Bell's palsy signifies paralysis of facial muscles related to inflammation of the associated seventh Cranial Nerve. Physicians may not realize that this syndrome is caused by the spirochetal agent of Lyme disease until proven otherwise." - http://thehumansideoflyme.net/viewarticle.php?aid=62 So the Bell's Palsy plus the positive Lyme test strongly suggest Lyme... If I were you, I'd consider seeing an LLMD about all this.

Good luck,
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