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Old 07-27-2007, 07:41 AM   #1
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fixmymama HB User
Lyme?

Do you know anyone that has lost the ability to walk?

My mother has Celiac disease. (Autoimmune to gluten) But she has always had the general problems from what now has a name. But 4.5 years ago something else started. She had tingling in her legs with sharp stabbing pain. Eventually the intest pain left but so did her ability to walk. She has extreme Ataxia. Now if left standing on her own... well she can not. She will fall over. Now it seem to be affecting her arms. She can not shake salt on food. She just can not make that motion.
We have been told that this is a condition that some Celiac's get. I can not find anyone. I wonder if it is Lyme disease.
She has had 3 Lyme tests but all have been during this advanced state.
What do you think?
And what about a LL doctor in MN

Thanks
Missy

Last edited by fixmymama; 07-27-2007 at 07:42 AM.

 
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Old 07-27-2007, 03:16 PM   #2
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Re: Lyme?

Hi Missy, welcome to the board!

I am sorry your mom is so sick. Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test she had done?

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

The only Lyme doctor I have heard of in MN is Dr. Vrchota in Winona. I do not know if he is knowledeable. In WI, I have heard that Dr. Waisbren ath the Waisbren Clinic in Milwaukee; Dr. Steven Meress in Fon Du Lac; and Dr. Hoffmann in Eagle River are knowledgable, but I don't know if they are. I hope your mother can see someone soon.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Keep us posted on your progress okay? Your mother is lucky to have your support.

 
Old 07-31-2007, 09:51 PM   #3
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Re: Lyme?

Ticker,
Thanks for the info I got my mother in to see the doctor in Mil. WI. We have an appointment for the 14th of Aug. I very excited about the possiblities of treatment and terrified at the same time. I am afraid that she may be one of those people that do not respond to treatment or that the herx thing will be fatal.

Thanks for the help and writting me.
Missy

 
Old 08-01-2007, 07:46 AM   #4
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Re: Lyme?

Hi Missy. I am glad your mom will be seeing the Lyme doctor soon.

It can be difficult going through treatment and it is normal to feel worse before feeling better; however, she can get better with proper treatment.

Keep us posted on how she is donig okay?

 
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