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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » LLMD in MI

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Author Topic: LLMD in MI
Laura_W
LymeNet Contributor
Member # 31491

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I am a 32 year old female. Most prominant of my symptoms started about 8 months ago directly after I had a hysterectomy, and have been progressing.

The last time that I knew I was biten by a tick was 20 years ago when I lived in California. I have also lived in Arizona and Montana.

First, I want to list the basic issues that I tend to overlook. They are just things I am use to. But, have gotten worse.

Symptoms of depression, severe fatigue, headache, word finding issues, brain fog, and short term memory issues have been chronic and I have dealt with for many years.

After surgery I had double vision. Since then I have transient unilateral blurry vision that lasts for 5-30 seconds at a time. My left eye is worse. This occurs multiple times a day. And floaters have increased in the last 4 months.

I was diagnosed with papilledema.

Psuedo-tumor cerebri has been ruled out by neurologist and opthalmologist and neuro-opthalmologist.

About 8 weeks ago I had pain with eye movement in my left eye. But with no vision loss.

About 6 weeks ago starting with my left side I experienced muscle weakness. Felt like my leg was going to go out underneath me.

Also had muslce stiffness and tingling. My hands will go numb. My muscles burn. Shoulders and neck are stiff.


The weakness (muscle fatigue) is now prominant in both sides of the body, legs and arms and hands.

Climbing stairs has become difficult. Normal life tasks are extremly difficult to complete.

Fine hand grasping, like writing or coloring with my daughter cause pain after a small amount of time.

Tests done and normal:

Brain MRI w, w/o contrast
Cervical MRI w, w/o contrast
(mild bulged c3 c4 c5 c6)
Lumbar Puncture
ESR (performed at start 8 mo ago, high normal)
EMG/NCV
The blood test for Myasthenia Gravis
PTH
Cortisol levels
CK

Abnormal results

Vitamin A
Iron (anemic)
B-12 deficient
Bone density test (osteo-penia)
blood calcium level was low...
then 3wks later it was normal

Screening for Lyme was POSITIVE!!!!
BUT.... I was told that because not enough of the confirmation BLOT tests were not positive that I did not have Lyme.

Ideas? Does this sound like Lyme to you?

I am soo tired of everything coming back normal and the doctors just looking at me like I am making things up!

Also, I am on multi-vitamins twice daily, in addition to vitamin A supplement and calcium, and b-12 oral and shots as supplements.

--------------------
10/10 EIA 1.4+, 41 (IGG), 23 (IGM)
Bitten over 20 years ago.
Currently not treating, looking for a Dr who will work with my insurance lol.

More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision.

Posts: 323 | From Michigan | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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If you had the ELISA test and it was positive, then you have Lyme in my opinion. The ELISA is known for false NEGATIVES.

You may want to get that "confirmation blot" done through Igenex lab. www.igenex.com Test #188 and 189.

But find an LLMD first if you can. I will send you some names.


Please read in Medical Questions for great information and help:

http://flash.lymenet.org/ubb/ultimatebb.php/forum/1

Each forum also has special links at the top of each page containing information you may find helpful.

 -

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95730 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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PS.. you may want to copy and paste your medical information in Medical Questions where you will receive more feedback.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95730 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Laura_W
LymeNet Contributor
Member # 31491

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ok, I just pulled out my lab reports...

I may have miss spoken.... the screening I had was a Borrelia burgdorferi antibody EIA screening. Which was positive with a result of 1.40. anything over 1.10 was positive.

The western blot was reactive for
41 KD (IGG) BAND
AND
23 KD (IGM) BAND

I will repost the information in the medical questions forum with this information added.

--------------------
10/10 EIA 1.4+, 41 (IGG), 23 (IGM)
Bitten over 20 years ago.
Currently not treating, looking for a Dr who will work with my insurance lol.

More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision.

Posts: 323 | From Michigan | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
LPurdy1040
LymeNet Contributor
Member # 6543

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Hi Laura

I would be happy to assist you in finding a LLMD here in MI. You are more than welcome to call me at 1-888-784-5963.

Hugs
Linda Lobes
President
Michigan Lyme Disease Association
1-888-784-5963

Posts: 107 | From Michigan | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
Laura_W
LymeNet Contributor
Member # 31491

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Hi Linda

I have left you a message at that number, with my contact number. I hope to hear from you soon. Lymetoo was able to give me the names of a few doctors, and I am in luck that two of them take my insurance. Although, If I can find someone closer I would love that!!!

--------------------
10/10 EIA 1.4+, 41 (IGG), 23 (IGM)
Bitten over 20 years ago.
Currently not treating, looking for a Dr who will work with my insurance lol.

More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision.

Posts: 323 | From Michigan | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
   

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