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Old 01-31-2007, 05:16 AM   #1
Join Date: Sep 2005
Posts: 411
sunshine221 HB User

I've had problems for almost two years. It started with knee pain which the ortho couldn't find anything wrong. Then I developed arm swing and gait issues. While my first neuro initially thought MS or Parkinsons - MRI showed Spinal stenosis and I had surgery 9/05.

Many things are better, but I still have gait issues and some tremors. A neuromuscular specialist says its Parkinsons but a knowlegeable friend suggested that I get tested for LD.

I've been reading the board and what I don't see at a quick glantz are results? Does anyone ever get resolution of their symptoms? (or do those people just no longer post). Should I ask my PCP to order tests? I don't even know if my area (rural upstate NY) has infectious disease docs or LLMD's.


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Old 01-31-2007, 06:22 AM   #2
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Re: Recovery?

Hi sunshine221, welcome to the board!

I agree about being evaluated for Lyme disease. I believe that NY has the highest number of cases in the country. 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
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
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 knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who hav 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. There are not many Lyme knowledgeable doctors in the country. I know of two in NY who come highly recommended: Dr. Kenneth Liegner in Armonk and Dr. Richard Horowitz in Hyde Park. I hope you can see one soon and get some answers.

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.

Going through treatment can be difficult, and it can take time; however, with proper treatment you can get better. People who get well usually are not posting on the boards, they are out living their lives.

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