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    Old 03-22-2002, 07:21 AM   #1
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    Post To those with Fibromyalgia and/or Chronic Fatigue

    I correspond with people from all over who have Lyme Disease and other tickborne illnesses. A large percentage of them were first diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome. They suffered for years and then found out that they have Lyme Disease. These diseases, like Fibromyalgia and Chronic Fatigue Syndrome, are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.

    Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state except Montana.

    Below is a Lyme Disease symptom list:


    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

    Ticks can also transmit several serious co-infections:

    --Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.

    --Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.

    --Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission

    Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:

    The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.

    Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.

    If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease.

    I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.

    [This message has been edited by moderator1 (edited 04-04-2002).]

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    Old 03-22-2002, 07:45 AM   #2
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    Thanks for the info! Lyme is definitely on the first line of things to rule out. I know that their are 2 tests, one is more sensitive than the other. My original doc only did the first, I had to ASK for the better test. One is Eliza and one is Western Blot I believe. Can you tell us which is the more extensive? I was furious that she'd run only the most basic test, especially since I spend a significant amount of time in upstate PA every summer and at home have several outdoor pets that carry home ticks.

    Turns out that I don't have Lyme but I recently met someone local to me with FM who has had Lyme TWICE!


    Old 03-22-2002, 02:19 PM   #3
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    Hi Rachael, I am happy to help. No Lyme test is completely reliable, and many people who have Lyme do not test positive. It is supposed to be a clinical diagnosis. From what I understand, the ELISA or titer test is the least reliable test. The Western Blot is more extensive, but needs to be done at a reputable lab. It shows numerical bands. The CDC requires a large number of bands to show for this test to be considered positive. The majority of people who have Lyme do not get this many bands. Many Lyme doctors focus on which bands show, because some are specific for Lyme Disease.

    PA is a Lyme-endemic state. I hope the woman you mentioned received long-term aggressive antibiotic treatment until she was symptom free plus a little longer. It is possible that she was re-infected, and it is also possible that she may not have been treated long enough initially.

    Old 03-22-2002, 02:54 PM   #4
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    This is one of the reasons why it is so very important to have all the testing done by a doctor who really knows what they are doing. We had the 3 different tests done the first two you mentioned and the new one. We can't remember the name but, it was in the news when released. It has only been out for 2 years now. We were negative thank goodness.

    There are just so many with the same symtoms as Us here. Rule out tests are a must and of course the right treatment for what each has.

    We have had 3 neighbors on our street with lyme and we get tested every year now by our PCP. Better tobe safe then have another problem.

    Thank you for posting this valuable info.

    Take care ~Kim & Gary~

    Old 03-24-2002, 02:36 PM   #5
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    Ticker thanks! I use the same doc that Kim does and I show no sign of Lyme,I've been tested a few times. I gave Dr.K's number to the lady who's had Lyme since he's also certified in infectious disease. I was never that concerned about Lyme but knowing what I do now, I'll be much more vigilant with my children. I wouldn't wish this on anyone and would die if my kids had to suffer like I've been suffering.

    I have another question. What about seashore areas? We go to the NJ shore each year and there are a lot of wooded area's and deer/animals. I'm wondering if I should check them there.

    Funny side note, my mom is a nurse and was always adamant that we saw an MD not a DO. Dr. K is a DO and with my huge list of medical problems in the last few years, I've been through a laundry list of doctors. The best ones I've seen have been DO's. They're also best at not writing off non-traditional options like vitamins and minerals. When I tell Dr.K that a medication isn't effective, he listens and takes me off or switches me. I don't get the garbage about continuing to "try" things that don't work.

    I've come farther with him in a year than I have in 10 years.

    Old 03-24-2002, 06:28 PM   #6
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    Hi Kim, thank you for your thank you! Yes, I agree that it is very important to see a knowledgeable doctor. I believe the other Lyme test you are thinking of may be the PCR. The problem with diagnosing Lyme Disease is that no test is completely reliable. It is possible to test negative and have it.

    Since Lyme Disease is the second fastest-growing infectious disease in the US after AIDS, I am sure many people have it and are not aware. If other things have been ruled out and there is reason to suspect Lyme, a trial of antibiotics should be prescribed by a knowledgeable doctor who knows what reaction to look for.

    I was denied testing because I was falsely told there is no Lyme Disease where I live. By the time I was diagnosed, I was very near death. This ignorance really almost cost me my life. I am on a mission to help others if I can. If someone would have given me this information earlier, it would have saved me a lot of agony. So I completely agree with you considering the possibility, especially since some of your neighbors have Lyme.

    Old 03-24-2002, 06:38 PM   #7
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    Cioc1212, thank you too! Please do check you and your children carefully during tick season. Yes, you should definitely check them when in NJ. Several northeast states are highly endemic for Lyme (NY, CT, NJ, PA). Just get in the habit of doing tick checks and teaching your kids about ticks. If a woman has Lyme and is pregnant, she can pass it on to her baby if she is not treated with a safe antibioic throughout the pregnancy.

    As far as which kind of doctor to see, I think you should see whichever one works best for you. My family doctor is also a DO and he is great! I am glad your doctor is helping you.

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