Lyme disease at all time high
The CDC has issued a news release announcing that Lyme disease has nearly doubled since 1991. This increase in the number of cases involves ten states; Northeastern, Mid-Atlantic, and North-Central states. Connecticut, Delaware, Maryland, Massachusetts, Minnesota, New Jersey, New York, Pennsylvania, Rhode Island and Wisconsin had the most cases.he report says that during 2003-2005, a total of 64,382 Lyme disease cases were reported to CDC from 46 states and the District of Columbia. In 1991, there were fewer then 10,000 cases.
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This disease called Lyme is in EVERY STATE, and I find it disgusting that our government does not want to get involved because of the constant infighting among the different medical groups. Get together and save the lives of the many that have gone undiagnosed because of the poor testing available to the mid-income and low-income families. I fought for 17 years, lost my job as an R.N., could no longer jog or play tennis – let alone tend to the wonderful family that I have. I am one of the lucky ones because I never let the dismissal of doctors in specialty areas get to me. Because my husband is in the medical field, I had the chance to socialize with many of my doctors. They all found individual problems and the symptoms I had were documented and treated. However, the pulmonary doctor just could not find a reason for a low oxygen saturation (80%) The first of many rashes were attributed to “possible nerves”. After the third cyclical “possible nerve” rash I got a referral to a dermatologist and had one of the spots tested to find these hives were a bite of some kind. When the dizzy spells would not go away after two months, I saw a Phd. Audiologist and had very expensive tests. Possible ear crystal disruption but my test results were “very unusual”. The Chronic fatigue had left me a limp sappling and the brain was a complete cobweb. This all started in August of 1989. I took an engorged tick removed from the back of my head into an army lab. The lab said not to give it a thought because Texas did not have Lyme Disease! Multiple arthritic conditions to follow. Two shoulder surgeries, multiple unexplained lipomas growing too fast and large again– doctors scratching their heads at the rate of tumor growth and fast degenerating osteoarthritis with joint damage in knees, ankles, thumb, shoulders and disk rupters in cervical spine and lumber area. Yet until a brain aneurysm rupture in August of 1999 did I get a rest from all above symptoms. While in ICU for two weeks after brain surgery, I was told I was going to have the two worst weeks of my life. I was to be awakened every hour on the hour. This was two of the best years of my life. Almost immediately all the joint pain lessened. Fatigue abated and I thought I had died and gone to heaven. No–I was receiving IV Rocephin and it was killing what I was about to find out I had been fighting since 1989. While in rehab., learning to walk and talk a couple of weeks out of ICU, my daughter called, a second year dental student in San Antonio, to tell me she had heard my life story that morning in one of her medical classes. A man that had been going down the identical road I had — same symptoms, syndrome, to include mutiple surgeries — also a brain aneurysm rupture, was luckily tested for Borrelia (lyme disease)and test was a high positive. I had the Elisa-negative, then the Western Blot and Bingo. It was a strong positive. My doctor worked with several specialists and their concensus was to allow two more weeks of Rocephin since I had gone undiagnosed with Lyme for 10 years and because of the amazing results I had had while in the hospital. I was me again!! I recovered enough to leave Colorado and back to San Antonio we went. I got my job back as an OB nurse two days a week, was playing tennis again, jogging, and thankful to be alive and WELL. About six months later all the symptoms came back with a vengence to include a new one – Malaria. This time I saw an infectious disease doctor who told me I had Post Lyme Syndrome. I felt like someone had just stuck a knife in my stomache. Thank the Lord above my husband’s tour as director for the Dental Residency Program was only two years. I suffered one bladder infection after another, a kidney infection that lasted six months and finally they had to use IV therapy to rid me of this. Had a pylogram and it was normal, as had all my tests in all the years past with all the specialty clinics. The floaters in my right eye got so bad that vision was obstucted to the point that I felt no depth vision at all. My Oxygen Sats. started downward. We asked to come back to Colorado for my husbands last tour. It was honored and I came back to my original doctors that had helped me with the disease before I left in January of 2000. Since I had been gone a clinic had opened that saw patients with similar needs as mine. They are a Lyme Literate group started by a doctor who had been diagnosed with ALS, and found to have Lyme. He was treated for six months with IV therapy and was back to work. How unfortunate that so many people will struggle with this horrible disease which is probably the cause of ALS, MS, dementia, Chronic Fatigue, Gulf War Syndrome, Fibromyalgia, etc., to name just a few and we still are told it only exists in some of our states. Let us get together and start teaching all doctors in all states the signs and symptoms of this great imitater. The protocal by the Infectious Disease Assoc. is two to four weeks of oral doxicycline. That is true if the disease is treated within a short period of time after the tick is checked or a doctor is smart enough to medicate a patient with the signs of this dreaded disease. The protocal leaves patients like myself out of the loop and I do believe IGENEX Labs diagnosis after I went to the specialists was a high titer for Babesia WA1, Babesia Microti, Borrelia B. and Borrelia Hermsli. The Lyme bacteria invades multiple tissues and is able to assume a dormant state which could possibly leave some patients without a positive test result. Esp. if the test is one that most doctors are allowed to do and that test shows a positive on maybe 20% of true Lyme patients. The malaria symptoms were and are very real and that was most likely from the parasite-Babesia. So again please be aware this disease is in every state in the U.S. as well as most countries throughout the world. The Insurance Companies had the perfect reason to stop all IV treatment payments when the Infectious Disease Assoc. made the statement that Lyme Disease can be cured with two to four weeks of oral medication. What a shame that so many people that were chronically ill were sent back to dwell in Hell. Thank you, At some point this disease will strike a family member in an important specialty area and when they look for help it will be there because of the wonderful Lyme Literate medical community that are trying their darndest to be heard!! Please drop me a line if you would like more information from a nurse that is quite well-versed from a patient’s viewpoint. pam482@hotmail.com
Pam,
I am so sorry to read your horrible story. I hope that this note finds you better. Where do you live? I use to live in Jersey, actually Monmouth County, and have sinced moved to NY. I started my horrible journey with Dr. Steere. It has been a horrible existence. I wouldn’t be here with out the love and support from my husband. I have been to the best of the best, and still have no quality of life. I as well, ended up with all of the co-infections. People don’t have any idea what agony this disease can cause. I have been to rallys and conferences…and am just so angry over the “cover up.” I can’t believe that it has gone on this long. I would love to hear from you.
Take care, Linda
THis past summer I too had a ruptured aneurysm and they tested me for Lyme which came back positive. I had been tested years before for it and it too was positive and I was treated and that was the end of it I thought. I really don’t think I had any symptoms of Lyme and I had been to emergency room for an unrelated cause to be tested the 1st time too. I don’t know what got me thinking about relating the aneurysm to the Lyme but when I googled it low and behold, lots of matches came up.
I have recovered from the surgery and I ampretty much back to my old self, albeit, very cranky these days. I went to my gen. practitioner and she ignored the lyme because I didn’t have any symptoms. What do you think I should do? I live in CT not too far from NYC.
thanks
bizzy
After reading through this article, I feel that I need more information on the topic. Could you share some more resources please?