posted
I have been suffering from primarily muscle pain and some joint pain, along with a list of other symptoms for nearly 6 years. Initially I was labeled Fibromylagia by the first doctor and when I asked about testing for lyme they refused because I couldn't specifically recall a classic bull's eye rash. Although I do recall a very reactive insect bite on my leg that was very red and swollen and unusual.
I just have put up with the symptoms and the frustration for all this time and finally when things seemed to be somewhat worse I tried a new doctor. This one doesn't really buy the "fibromyalgia" so he did some blood tests, sed rate, tested for lupus, thyroid, etc all of which came back normal. I hadn't immediately asked about tsting for lyme, but did call and ask about it and he immediately ordered the test. The blood was drawn just this week.
My question for people here is, if it comes back negative, I should probably still pursue the lyme possibility further? I'm not sure exactly which tests he ordered as I didn't think to ask when I was there. Thanks for any suggestions. A friend of mine knows a family in the area with two kids with lyme disease so its definitely been found here.
Posts: 2 | From Rutland, Iowa | Registered: Apr 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, if the test comes back negative, you must pursue further. The reason is because no lyme test is 100% accurate.
In fact, if the doctor ordered the ELISA test, that is worthless. Let's hope he ordered the Western Blot. It still can miss up to half the cases of lyme, but it is better than the ELISA.
Also, he most likely ordered it from Quest or LabCorp. These are not recommended labs.
See what Burrascano says here:
"Because Bb serologies often give inconsistent results, test at well-known reference laboratories. The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots- but be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy." (page 7)
The first sentence says to test at "well known reference laboratories." That means labs like Igenex. Burrascano says that everywhere he speaks.
So, if your test comes back negative, see if you can get the doc to order a Western Blot test from Igenex.
Their website is Igenex.com
If he will do it, you can order the test kit. Then, the doc signs off on the order, then his staff draws the blood and prepares it as Igenex instructs.
That will be a much better test. Still, Burrascano says that lyme cannot be diagnosed by a test because none of the lyme tests are 100% reliable. Here is what he says:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
Notice the last sentence. Even in the year 2012, an important factor in making the lyme diagnosis is how the patient responds to a course of lyme therapy (meaning antibiotics).
You may want to contact some of the lyme support groups in your state to find doctors willing to do Igenex tests on you. See Support Groups on left side of page.
The lyme test Western Blot IgG and IgM costs about $200. You pay up front and submit to your insurance yourself to see if you get any reimbursement.
If you don't pursue this and if it is lyme, you will just get worse and worse as time goes by. Lyme is found in every state in the nation.
Very, very often fibro turns out to be lyme. I have known many cases of it. My lyme doc who cured me had the fibro diagnosis but it was actually lyme disease. He told me that once he found this out, he tested all his fibro patients for lyme (using Igenex) and 100% of them were positive for lyme.
So, he treats all fibro patients for lyme regardless of test results and he gets rid of their "fibro" for them.
If your fibro is progressing, meaning getting worse and more symptoms over time, then it is almost positively lyme disease.
Mild fibro that never gets any worse is not lyme. That can go away if a person's sleep can be restored, or if they go on an anti-depressant, etc.
But serious fibro is lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Exactly what TF said! I would say some, if not most, here tested negative at some point. You will never find an answer if it's lyme until you see a lyme literate doctor.
The criteria for a positive result is flawed. Your doctor may have good intentions, but wrong standards for a positive result.
Bite the bullet and get tested through IGENEX for a couple hundred bucks.
You can watch the movie "Under Our Skin" for more insight into lyme. It's on Hulu.com for free.
Sorry to hear you are going through this, but the fact is it's very possible you might have lyme and chances are your doctor does not specialize in lyme and co infections. Neither do Infectious Disease doctors.
Good luck...BTW this website is a great source for information if you click on "medical questions", then use the search feature you will find out almost anything you need to know on fibro and/or lyme.
Posts: 184 | From taking pills | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Thanks to all for the input! Exactly the information I need to do more research on this. I can hope this first test might give a positive result but my gut tells me there is a good chance I have lyme so want to be educated to know what to do next.
Yes I am sure Quest is probably the lab...the clinic uses them. I wonder if IGENEX has to be only submitted through a doctor, as I work for a vet and the other staff and I could probably get the samples needed and submit them if we don't have to go through a doctor. :-P Something for me to check into at least...
I will check out all the links and videos. Thanks again!
Posts: 2 | From Rutland, Iowa | Registered: Apr 2012
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