posted
Went to my neuro today. He will not sign off on Igenex test. He said that from recent reports he's been reading, antibiotics are not effective for the treatment of lyme and that there are too many false positives. I tried to explain my history, but he is convinced I have Fibro, nothing more. He wouldn't even TOUCH the Igenex paperwork, let alone read it. He told me that he could refer me to an ID here in Houston.
I'm a bit down now. May have to travel to Dr. F or the east coast, just to get a test.
Lisa
Posts: 22 | From Texas | Registered: Aug 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
That is so maddening.
IGeneX tests are about 56% positive, if I remember correctly.
If that seems high, remember that mostly LLMD's are sending suspected lyme patients' blood. It is not like these are people off the street.
So far as I know, antibiotics are the only thing approved at this point for treatment of lyme, though adjunctive things can help, of course.
Print him off the ILADS guidelines.
However, even if he complied with a "humor me" approach and agreed to sign, you would NEVER get treatment from him, even if your test was glaringly positive. He'd claim it was a false positive, or at best give you two weeks of low dose doxy.
I feel so bad for those like you who are far from an LLMD.
Something to consider: Go to a walk in clinic. Maybe you actually remember being bitten by a tick, after all! When they attempt to give you an ELISA, whip out your kit and let them know the ELISA is wrong over half the time and you want the best testing there is.
Good luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lisa,
Run or walk or ride to your nearest local walk-in-clinic.
Have the doctor sign the test and draw the blood.
Of course that doc will get the results, but you can get a copy.
I am sure if you pay for an office visit as well as for the drawing of blood,
Someone will be happy to accept your money for a signature.
Hope you get someone to sign it soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry!
Turn your life around.. and your luck.
Head to the LLMD!
The stories here are quite similar. Avoid ID ducks and neuro's.
I've yet to see them stand up and do the right thing. The neuro doesn't want to be proven wrong. If he sent out the test for you.. it would look bad on him.
posted
Pass on the ID duck. You don't need to hear from anymore of them!!
Neuros and ID's have a special place waiting for them in H***.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
My rheumatologist refused to order a Western Blot from Igenex.
I finally got my family doctor to order the test, by assuring him that I would mail it myself, pay for it, and would not expect him to treat me for Lyme, should it be positive.
One thing you can do, is to call the toll free number for Igenex, and ask them to send you the test kit, for tests #188 and 189, which are the numbers for Western Blot IgM and Western Blot IgG for Lyme.
Once you have the kit, you can read through the directions. You'll see that the only thing you really need from a doctor is that they write the order for the Western Blots on their prescription pad.
The kit is free, and you are not obligated to follow through if you change your mind.
Any lab can read the directions and draw the blood.
You enclose payment with the serum (a check or credit info) and put it in the post paid FedEx envelope. (Packing materials are included.)
Then you look up the FedEx number in the phone book, and call to ask for a pickup.
These two tests are good for screening for Lyme. Igenex will send the results to your doctor, and you can get a copy from him.
When you do go to an LLMD, take the Western Blot results with you.
posted
Yes find a LLMD,stay away from ducks,and big teaching medical universitys.Lyme does not exist to them.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
There are doctors in California, MO, and other states around you that are LLMD's. So no, you don't have to travel all the way to the east coast from TX.
Post a message on the seeking a doctor section of this website.
He obviously is not informed about Lyme disease since he doesn't know antibiotics are necessary for treatment of LD so it is best to get another doc anyway.
You are probably wasting your time, but tell him this:
Neurological complications most often occur in the second stage of Lyme disease, with numbness, pain, weakness, Bell's palsy (paralysis of the facial muscles), visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headache. Other problems, which may not appear until weeks, months, or years after a tick bite, include decreased concentration, irritability, memory and sleep disorders, and nerve damage in the arms and legs.
Is there any treatment?
Lyme disease is treated with antibiotics under the supervision of a physician.
What is the prognosis?
Most individuals with Lyme disease respond well to antibiotics and have full recovery. In a few patients symptoms of persisting infection may continue or recur, requiring additional antibiotic treatment. Varying degrees of permanent joint or nervous system damage may develop in patients with late chronic Lyme disease. In rare cases, some individuals may die from Lyme disease and its complications.
The best advice I can give you is to get a real LLMD.
Posts: 339 | From nowhere | Registered: May 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If you really want a test you might be able to get one from the fibromyalgia and fatigue center. There are 2 in your State. You would probably be required to get a work up that includes more than lyme and I'm not positive they would use IgeneX. You could call them and ask. Don't know if these are close to you. http://www.fibroandfatigue.com/center_locations.php
Personally, I think you'd be better off going to an LLMD if you think you have lyme. They are in the best position to evaluate you.
If you ask your doctor to do the test, I believe he/she would have to go through some kind of registration with IgeneX just like with any lab. I don't think it is a big imposition. My fibro doctor has done it for me with a number of labs that he does not normally use.
Terry
Good luck, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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