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Lyme Disease Message Board


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I am 38 years old and have developed a number of nagging ailments over the last couple years that I suspect may be related to lyme disease but I am unsure because my symptoms don't seem to be classic indicators of lyme disease, seem too low grade or could be a series of other unrelated things. I have not talked to anyone that has had lyme disease that has had a similar experience. I am hoping someone that has had a similar experience will read this and provide some advice to help me decide to persue this further or not.

I have been tested for Lyme disease, ELISA and Western Blot, about a month ago. The results were negative. My doctor's, GP and rhuematologist seem to have ruled out Lyme Disease. My symptoms seem to wax and wane. Is there a better time to be tested based on the cycle of your symptoms?

About two years ago my wife and I decided to have a house built in upstate NY. Before we purchased land, we visited the wooded site several times. One night after being on the property earlier that day I found a tick near my arm pit that was engorged. I removed the tick and called my GP the next day. My GP told me to watch for a rash and any flu-like symptoms but not to worry. I never had a rash or immediate flu-like symptoms.

We bought the land and had our house built. Shortly after moving in our new neighbors warned us of Lyme Disease as many on our street have had Lyme Disease.

Since we moved in I've had a series of symptoms, most of which I have been unable to get any kind of diagnosis to explain the way I feel.

The first possible symptom I remember is having a strange headache on the left side of my head above my ear but towards the top of my head. Its not a terrible pain. Its more an annoyance than anything. Pain relievers don't seem to effect it. I had a CAT scan that showed nothing. My doctor put me on something for migraines and that did nothing. I still have this pain on a daily basis but not constantly and with no regular pattern. On the onset I would have a stiff and creaky neck that seemed to go with the headache at times.

A few months later I started getting this strange pain in my chest on the left side that would move around from my sternum to my collar bone to my shoulder, my arm pit and in my arm. Mostly this pain is mild but on occasion can be sharp. This pain comes and goes as well but I never go more than a few days without feeling anything there. My lymph nodes in my chest at times can be tender when touched.

Shortly after this I started feeling a lot of soreness in my ribs and abdomen that would come and go. Pain like gallbladder pain except I will get the same pain in the same location but on the other side or sometimes in the back. Thinking back I have had a lot of what I think were gallbladder attacks shortly after purchasing the land. I had an ultrasound that revealed a small polyp in my gallbladder. Mild pain seems to come and go and every few months or so I will get some sharp pain that may last two weeks in this general vicinity but not exclusive to my gallbladder.

I also seem to be prone to cracking my ribs or something like that when I put all of my body weight on my rib cage. I would hear a pop and be in a lot of pain for a month.

I experience occasional twitching in my eye lids, face, flank, arms and legs. Twitching in my legs usually occur with muscle cramping. Occasionally my body will suddenly and uncontrollably jerk.

Lately I've been feeling joint pain that moves around from joint to joint elbows, shoulders, wrists, fingers, toes, hips, ankles and knees. I have pain in the bottom of my left foot near my pinky toe that stays constant for weeks. I've seen a Rhuematologist and I show no signs of inflammation that he can see on X-rays, examination or blood work. My GP did say I had an elevated RF but subsequent tests for RA don't show that anymore.

I also have acid reflux which seems to have started around the time we bought our land.
Hi kid_dynomite, welcome to the board!

I am sorry you have been feeling crummy. First, no Lyme test is completely reliable and reuslts can vary by lab. Regardind the Western Blot, although the CDC requires many bands to show for it to be positive, many people who have Lyme do not have that many bands show. Often, Lyme doctors focus on which bands show. Some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive testing and list more bands. I suggest that you get copies of your results.

Although a bullseye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash. It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab.

To me your symptoms sound like Lyme disease and possibly co-infections. You had a tick bite, your neighbors have had Lyme, and you have symptoms. Babesiosis can cause chest symptoms and headaches and Bartonella can cause swollen lymph nodes. Do you ever have shortness of breath or night sweats? Lyme symptoms wax and wane like you describe and migrate around the body.

Below is a Lyme disease symptom list. You can have any number of symptoms.
[COLOR=Green]
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,[COLOR=Green]depression[/COLOR]
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol[/COLOR]

I know of three Lyme doctors in NY who come highly recommended: in East Hampton, Armonk, and Hyde Park. Would you like one of their names?

Hang in there okay? Good help is available and you are not alone.





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