Posted on Apr 12, 2010 in Blog |
A friend wrote me today asking for suggestions for a neurologist and a primary care physician who is a good diagnostician.
‘I’m experiencing some weird physical symptoms myself, and tested negative for Lyme at my internist’s the other day. However, she wants me to see a neurologist for joint pain and persistent neuropathy in my hands and feet.’
I replied, ‘Did the dr run the Western Blot AND the Elisa or just the Elisa? Do you have a copy of your test results? I would love to see them . . . ‘
She replied, ‘She just ran the Elisa only. She said if my symptoms haven’t cleared in 6 months then she’d like to rerun the Elisa. My symptoms aren’t debilitating, but are certainly strange, and I still second-guess myself as to whether this is just part of getting older and less fit or whether something else is at work.’
I get similar emails about once a week and each one makes me want to scream at the top of my lungs. Please tell me, please have one physician logically and reasonably explain to me why they would choose to allow a patient to deteriorate for six more months without choosing to run an accurate Lyme test, if for no other reason than to rule it out?? Someone find me a physician who will answer my question without arrogance, attitude, or ignorance. Please.
I cannot say this enough. I cannot say it loudly enough. Read the symptoms at the end of this. If you have any of these symptoms, please go to a physician and DEMAND the following:
I am having the following symptoms (list them). While I know they could be related to a myriad of conditions, I specifically want to rule out Lyme disease with the following specific test: I want you to run the Elisa test. And on the blood order, I want you to order that the Western Blot be run regardless of the results of the Elisa. And on the Western Blot, I want ALL of the following DNA bands tested: 12, 18, 20, 21, 22, **2325, 28, 30, **31, **34, 35, 37, 38, **39, **41, 45, 50, 55, 57, 58, 60, 66, **83, **93. If you are really having trouble with the doc, make him/her run at least the bands with the double stars. They are they most common markers.
If s/he gives you gruff, you can say any one or more of the following:
I am paying you. You are the service provider. I simply want to rule this disease out as a possibility (yes, this is my angry, exasperated answer).
I have heard a lot about Lyme disease lately and how vastly underdiagnosed it is and I just need to put my mind to rest. And this is the only way I can put it to rest.
I know someone (that would be me, folks) who had similar symptoms to me and she spent years with different diagnoses. Despite all the medications and treatments, she didn’t start feeling better until she started getting proper treatment for her (finally) diagnosed Lyme disease.
I don’t want to wait a few more months. I want this done now.
When the doctor says:
Lyme Disease is so rare, we don’t test for it . . . .you say: well of course it is going to be rare if you don’t test for it! That’s why we need to test for it!
We don’t have Lyme disease in this area . . . you say: Lyme disease has been reported in every single state. Though some physicians may consider it to be rare in this area, I still want the test . . . and/or . . . (if you live in Loudoun county, VA) Loudoun County, Virginia is second in the United States for the most reported number of Lyme Disease cases, second only to Connecticut where it was first discovered.
Some of you have told me you have already been diagnosed with rheumatoid arthritis, lupus, fibromyalgia, chronic fatigue syndrome, MS . . .
Some of you don’t want to ‘offend’ your current physician by asking for the test. I ‘get it’ that you don’t want to offend someone who has been treating you for another condition, but if you had a broken leg and they kept treating you for a sprain, they would splint it for a bit, give you painkillers and it would feel better for a bit, but you were still in pain, wouldn’t you want to get the xray to find out if it’s broken? Don’t you want to know if you really have Lyme Disease that is masking as something else? Don’t you want to get on the right medication? Don’t you want to find your way to a cure?
So ask for the damn test. And then . . . .
When the results come back, ASK FOR A COPY EVEN IF THE PHYSICIAN SAYS IT IS NEGATIVE.
BECAUSE YOU CAN STILL HAVE LYME OR A CO-INFECTION OF LYME . . .
It gets convoluded in here because of ‘CDC standards for diagnosis’ – the result can technically be negative and you can still have Lyme because the diagnosis needs to be made in conjunction with clinical symptoms.
Most physicians are not knowledgeable enough (yes, even the really bright, sophisticated, highly rated, highly touted) about Lyme specifically to make this diagnosis. They read the test results, see negative, and go on . . .
Many labs don’t have sophisticated or sensitive enough equipment for Lyme Disease. If you REALLY want to get one of the best Lyme tests, use Igenex lab in San Diego, CA. But, most of you won’t and for now, that’s ok. Go to Quest or LabCorp. Just get the test!
IF ANY OF YOUR DNA BANDS TEST POSITIVE or INDETERMINATE, YOU NEED FURTHER TESTING!
At this point, you need to see a Lyme Literate Medical Doctor . . . an LLMD. If you reach this point, there are people with Lyme disease in your area that we can connect you with.
Some Symptoms of Lyme Disease: clumsiness, knee pain, knee injuries, thigh pain, pelvic pain, back pain, back injuries, balance issues, headaches, memory loss, urinary incontinence, joint pain, loss of executive functioning skills, noise sensitivity, pancreatic problems, blurry vision, fatigue, inability to concentrate, word searching in conversations and in writing, sun and or heat sensitivity, unexplained rashes, tooth problems, joint swelling, irritable bowel syndrome, more than two sinus infections in a year, thyroid problems, weakened auditory processing skills, h.pylori infection, diarrhea, feeling of stiffness or restricted joint flexibility, stomach or antrum atrophy, heart palpitations, persistent, nonproductive cough, diseased gallbladder or gallstones, unexplained fever, even low grade, adrenal gland problems, numbness, tingling, itching, or burning sensations in the feet and/or hands, sleep disturbance or insomnia issues, daytime sleepiness, loss of fine motor skills, difficulty taking a deep, full breath sometimes, peripheral waves, dental pain, low body temperature, light sensitivity, brittle nails, eczema, muscle twitching, hair loss, muscle weakness, skin sensitivity, sore soles in the am, vertigo, ringing in the ears, dizziness, forgetting simple tasks, facial paralysis, muscle cramping.
I know, you’re thinking, some of these are just middle age, or everyone has some of these once in a while . . .
I experienced over 80% of these symptoms in my lifetime, many of these since 2003. I could explain away almost all of them with something else . . . but in reality, I had Lyme disease and needed to be treated for it. And I am getting better. I am healing because I finally got the proper diagnosis and because I am getting the proper treatment.
I am not the one in a million . . . .Lyme disease is NOT RARE. It’s just rarely being tested!
Please, just rule Lyme out . . . . get properly tested.