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DonnaReagan
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Posted: Mon Mar 5th, 2007 06:13 am |
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Many people receive a variety of diagnoses prior to receiving their diagnosis of Lyme disease, or of another tick borne disease such as Master's or STARI's disease. The reason for this is quite possibly due to the lack of appropriate education provided to front-line physicians throughout the United States.
There is a false assumption made by most physicians, thinking Lyme disease is just an East Coast disease. In fact many Texas doctors are known for suggesting that we do not get Lyme disease in Texas.
To the diagnosed Lyme patient living in Texas - that is a ridiculous assumption for many reasons. However, many of those doctors should not be blamed for operating from a place of ignorance, as such notions are perpetuated by the lack of information provided by the Centers for Disease Control (CDC) and by their confusing, and stringent criteria they maintain for an individual to meet their epidemic surveillance criteria.
Most physicians are unaware that patients are not required to meet the CDC's surveillance criteria in order to be diagnosed as having Lyme disease, and that essentially Lyme disease is a CLINICAL diagnosis and patients do NOT have to be sero-positive (positive blood test) in order to receive a diagnosis of Lyme.
Most tests for Lyme disease seem to be unreliable at this point, as many insurance approved labs do not test for all the bands - even omitting critical bands for the Borrelia bacteria (the bacteria that causes Lyme). [For more info - see next topic.]
For this reason, many patients may have received a negative Western Blot test from labs such as LabCorp or Quest, while the same blood sample submitted to a speciality lab might register with a positive result. Speciality labs, such as Igenex labs in Palo Alto, California focus on identifying all significant bands.
However - most doctors are not even aware of the existence of such specialty labs nor are they aware of the problems associated with the more common labs. For this reason, thousands of patients each year are misdiagnosed.
For this reason, it may take several years or even decades to receive an accurate diagnosis.
On a personal note - I was not diagnosed with Lyme disease until November 2004 - after 25 - 30 years of waxing & waning symptoms; a variety of diagnoses, & misdiagnoses that included countless bouts of depression, whether I was actually depressed or not; Ankylosing Spondylitis; Chronic Epsteim Barr Virus; Chronic Fatigue Syndrome; Fibromyalgia; Lupus; Multiple Sclerosis; Migraines; Irritable Bowel Syndrome; Interstitial Cystitis; and countless other issues I can no longer recall!
Although the road to recovery may be long, and no one wants to have Lyme - I see the receipt of an accurate diagnosis as the triumphant first step toward greater health. If you don't know what you have....you are hard-pressed to find the right treatments that will bring about a return to health.
Although I would not wish Lyme disease on anyone - there are other syndromes & diseases which have an even less favorable prognosis. Therefore, if you have been diagnosed with Lyme disease -- although the journey ahead may not be easy - at least an accurate diagnosis now allows you to know where you are going.
Blessings to you all on your journey to greater health,
Donna
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monithetart
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Posted: Sun Oct 26th, 2008 05:56 am |
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I was diagnosed with Lyme disease by a family practice doctor in June of this year. The last time I had remembered being bitten by a tick was more than 10 years ago, but I've heard that it is possible to have one attach, pass the pathogen, and disattach without you ever knowing. Still, I've had some of the symptoms in a smaller degree for a long time, until about a year ago, when I weaned my youngest. Then I developed serious fatigue. I had had some arthritis in my hands before I was pregnant, and it all but disappeared while I was pregnant and breastfeeding. But afterward, the arthritis spread all over my body, especially in my waist, hips and neck. Then I felt pain in my bones and cartilage (yes, I was able to tell). When I started getting muscular pain and becoming forgetful, I knew something was seriously wrong with me. It felt like the day after the first time you work out, but every day. Then I got triggerpoints all over my back and couldn't take it anymore. I had to seek help.
After four weeks of treatment, I wasn't experiencing any relief, and asked for two more weeks. They gave me the antibiotics, but then also referred me to an infectious disease specialist who said that "we don't get Lyme in this part of Texas." He ran no tests. Needless to say, I didn't pay that bill.
After the six weeks of antibiotics I did feel better. I'm still in an immense amount of pain, but it is tolerable by comparison. I was told that it could take months to years for the inflammation to disappear, but that the pathogen was dead.
Is it possible for the pathogen to have survived, especially given the possibility that it had been in my system for such a long time? Does anyone know a decent doctor who can try a therapy different that doxycyclene for 6 weeks?
Nobody I know believes the pain I'm in; they think it's in my head or I'm just lazy. Sometimes it takes me 15 to 20 minutes just to get out of bed if I've slept wrong (flat on my back). None of the doctors here in San Antonio know what to look for, because they don't recognize that lyme can be contracted here (I had both children diagnosed by pediatricians who didn't even know which tests to run, and ran ELISAs, even though that test is too insensitive to detect Lyme in children.
I hate that I have nobody to talk to about this here. I hate that people look at me and think of me as lazy or disorganized or stupid because they don't know what it means to have Lyme, or to feel this bad.
It felt like going from being a 40yearold to becoming a 90yearold in a matter of two weeks. To feel that much pain all at once was debilitating, and if I hadn't had two children who depended on me, I'm not sure what I would have done. But you can't explain this to anyone. It'd be easier for me to say, "I have cancer," and get some understanding, consideration, assistance, what have you, than to say that I have Lyme.
I truly feel alone and I am so tired of tired, and being in pain.
Mon
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