Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
I had a tick bite in the early 1970's, I had a sick husband and a newborn to care for at same time. I had a very tiny rash which at the time I presumed was a small worm under my skin from playing in the dirt with my son. I soon became so ill I could not move my left side or pick up my head. my Husband had to call our ambulance as he was to sick to help. I went to the Emergency room where all the nurses said get up you are faking it. I was in tears. A doctor who was there, but not from the ER came in and did blood work, but found nothing, I told him my two dogs had just been dx. with lyme. The doctor than said than lets treat you for it. within a few hours I could lift my head again, a few hours later I walked out of there.
now we are in 2003 Jan, I am working a good job at a hospital. I am losing wt. I am getting dizzy spells, I found a very tiny tick in my hair, thought it was a piece of dirt, plucked it out under finger nail to find it moving it's legs. I put it in alchohol, took it to Dr. asked him to test it. He said he would.
got sicker and sicker, I was asked by my job to quit or they would have to let me go. so I did what I had too. after many visits to my DR. he kept telling me it was my imagination. would not treat me for lyme. I got so bad I fell, bumped into walls, lost my short term memory, was driving and didn't realize it twice. almost had accident. I asked Dr. what about tick I brought in, what did it say? he informed me the lab threw it away and didn't test it, he did not request it. so now I am in May, not much money left, still have mortgage, still can't work, DR. still had no answer. after begging many times to put me on lyme rx. he flat refused. I could no longer drive. a friend brought me to dr. and I demanded to be treated or I would bring a lawyer with me next time, with this in Sept. he agreed to treat me, not enough though. I had to sell my home, when I got to FL, only place I could afford to go to, the Doctors asked me if I'd ever had lyme? I said yes twice, I asked for my records to be delivered only to find, they were " missing"
Dr. here put me on 72 day rx. seemed to work beautifully.
Now I am in 2007 Oct. I am having trouble walking, excrutiating pain in back, hips, and neck. dizzy spells, and am living on aspirin. I have a call into my neurologist here and am just sitting by phone hoping he will call, as my GP did not return my call from last wed.
Is it lyme? I don't know, but I do know this is no way to live. Drs. need to pay more attention to their patients and less on their money and bills.
if anyone there is a praying person, please add me to your prayers to find out what is wrong with me, so I can go back to leading a normal life. Oh, I am also severly filled with arthritis, and bursitis at this point, am being treated for depression, and many days cannot walk without a cane or two.
thank you all and May God Bless us all.
Lainie
now we are in 2003 Jan, I am working a good job at a hospital. I am losing wt. I am getting dizzy spells, I found a very tiny tick in my hair, thought it was a piece of dirt, plucked it out under finger nail to find it moving it's legs. I put it in alchohol, took it to Dr. asked him to test it. He said he would.
got sicker and sicker, I was asked by my job to quit or they would have to let me go. so I did what I had too. after many visits to my DR. he kept telling me it was my imagination. would not treat me for lyme. I got so bad I fell, bumped into walls, lost my short term memory, was driving and didn't realize it twice. almost had accident. I asked Dr. what about tick I brought in, what did it say? he informed me the lab threw it away and didn't test it, he did not request it. so now I am in May, not much money left, still have mortgage, still can't work, DR. still had no answer. after begging many times to put me on lyme rx. he flat refused. I could no longer drive. a friend brought me to dr. and I demanded to be treated or I would bring a lawyer with me next time, with this in Sept. he agreed to treat me, not enough though. I had to sell my home, when I got to FL, only place I could afford to go to, the Doctors asked me if I'd ever had lyme? I said yes twice, I asked for my records to be delivered only to find, they were " missing"
Dr. here put me on 72 day rx. seemed to work beautifully.
Now I am in 2007 Oct. I am having trouble walking, excrutiating pain in back, hips, and neck. dizzy spells, and am living on aspirin. I have a call into my neurologist here and am just sitting by phone hoping he will call, as my GP did not return my call from last wed.
Is it lyme? I don't know, but I do know this is no way to live. Drs. need to pay more attention to their patients and less on their money and bills.
if anyone there is a praying person, please add me to your prayers to find out what is wrong with me, so I can go back to leading a normal life. Oh, I am also severly filled with arthritis, and bursitis at this point, am being treated for depression, and many days cannot walk without a cane or two.
thank you all and May God Bless us all.
Lainie
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
You have come to the right place for information. Welcome to DS.
Deb
I have a fabulous doctor in central florida who treats chronic illnesses. He diagnosed my Lyme and diagnosed my kids with lead toxicity. If you want his name email me privately (juliehutch@bellsouth.net)
I am sorry you have been so sick. I know it is frustrating.
It is likely you were not treated long enough and/or aggressively enough previously.
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. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many 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. Do you know if you were ever tested for these?
If you need a doctor recommendation, you can send me a private message or email me at ko_@bellsouth.net Doctor names are not posted on the board.
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 at http://www.ilads.org/burrascano_0905.html 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.
Hang in there okay? Good help is available, and you are not alone.