I just switched to a new MD, as I lost my LLMD because of the TX medical board. This new MD ordered a bunch of expensive lab work, and I'm wondering if it is out of line. Labs included:
gliadin for celiac (a repeat of an expensive test which I had last year which was not positive..) Ana and C-reactive protein ( I beleive these test for rhuematoid arthritis) homocysteine (heart disease)
I feel that this MD is trying to give me diagnoses of rheumatiod arthritis and celiac disease, when Lyme (which I have a positive diagnosis for) explains all of my symptoms. I have an appointment in two weeks, when I will discuss all of this, but I want to know if I am off base in questioning the labwork.
I miss my LLMD--sigh.
Thanks!!
Momquixote
Posts: 6 | From Texas | Registered: Mar 2006
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bettyg
Unregistered
posted
Welcome Mom to the board... breaking this up for us neuro lymies to read. Please hit enter more often and double space between paragraphs; thanks on behalf of us..Betty
quote:Originally posted by momquixote: Hi-- I just switched to a new MD, as I lost my LLMD because of the TX medical board.
This new MD ordered a bunch of expensive lab work, and I'm wondering if it is out of line. Labs included:
. gliadin for celiac (a repeat of an expensive test which I had last year which was not positive..)
, Ana and C-reactive protein ( I beleive these test for rhuematoid arthritis)
. homocysteine (heart disease)
I feel that this MD is trying to give me diagnoses of rheumatiod arthritis and celiac disease, when Lyme (which I have a positive diagnosis for) explains all of my symptoms.
I have an appointment in two weeks, when I will discuss all of this, but I want to know if I am off base in questioning the labwork. I miss my LLMD--sigh. Thanks!! Momquixote
End of April 06, I'll be seeing a new LLMD too. She has a 16 page q/a to complete ... 2 whole pages on blood, etc. testing.
I just checked her 2 pages of blood tests, etc. ALL of which you showed above are included except the heart one...last one listed.
If you've done a test prior from REPUTABLE lab, I see no reason to redo it...my non-medical opinion only.
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posted
My 2 cents...Any good doctor would try and rule out many things. There is always the possibility you have more then 1 problem.
Posts: 408 | From NY | Registered: Jan 2006
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posted
For future reference -- Get copies of all lab tests and office notes (some doctors do not like to share these, but they are your records). You may have to sign HIPPA releases and pay copy fees -- depends on the doc.
We also get copies of MRI films, CT scans and x-rays etc -- some hospitals keep these for a long time and others discard them. We learned the hard way with both a SPECT scan and a PET scan -- all we have are the reports and of course they were normal because they were not read by Lyme literate radiologists.
Hubby has been to many docs over the last 5 years -- 1st 30 or so could not diagnosis his Lyme, babesia, bartonella etc. Next 30 or so all disagree on treatment protocols or dispute diagnosis.
We have refused many tests -- this is your right also. If it is a test you have had done before offer to bring a copy of the prior test to your next appointment or even leave it with the doc to put in your chart in between appointments.
Some docs get angry if you refuse testing while others don't have a problem -- it usually comes down to money.
Many docs make money on every medical test they order. This especially applies to "out of network docs who do not accept insurance". Sometimes it is just a few dollars for a CBC and other times it could easily be a $100 or more for a "test kit" from a specialty lab.
For expensive tests hubby gets the info from doc regarding the name of the lab and the diagnosis code -- then he calls his insurance company to find out what it will pay on the test. Sometimes he has to call the lab for more info to pass on to the insurance company.
Yes it is a hassle, but when you spend hundreds and thousands of dollars for tests it starts adding up and leaves less money for medicine and actual treatment.
If we don't understand what the test is for then we research that online or get info from the lab -- all the specialty labs have customer service reps who are usually very helpful.
Very hard to refuse tests in the hospital, but it can be done. Fortunately the hospital is usually limited to an allowance for tests by insurance and out of pocket amounts can be less.
If this new doc does not believe your diagnosis then it is time to move on. We have learned the hard way not to waste time with docs who don't believe you are sick. Educate them as best you can, but most are not openminded and will not change their minds.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BostonLyme2005
Unregistered
posted
Hi,
Sounds like the typical Dr. procedure! Although, you could have more than one thing wrong with you that needs attending to....
Yes, co-infects could be one reason, but have the tests done if you have the ins., then find a new LLMD FAST!
posted
Don't think it is clear, at least to me, whether the doctor is just trying to cover all the bases or looking for some reason to deny lyme. Ordering these tests or others is not sufficient to decide it is time to leave. I have had a lot of tests that were in some way a clue to the damage lyme can cause, and supported the diagnosis.
It is also the case that with state medical boards watching every move, these docs need to watch their backs. That can lead to "unnecessary" tests in the sense that only the state board would think they were necessary for that particular set of symptoms. And it is certainly possible to have more than one problem at a time.
You either need to wait for more clues as to the direction this is going, or if you have other evidence, tell us so our replies can be more useful. Have you discussed this doc with the local support group? They usually know what is going on and can give better advice than we can. People who post here frequently do not give the full picture, so we just are making educated guesses, which can be wrong.
Posts: 8430 | From Not available | Registered: Oct 2000
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
My Lyme doctor has ordered all those tests at one time or another. They are very useful markers for what kind of damage is happening. Homocysteine, for example, can show whether there is low levels of B-12. I know 3 Lymies who just had this test, and then had to have B-12 shots.
I wouldn't use the tests to decide if this doctor is good for Lyme. Ask around more to find out his reputation, and maybe see what he does with the results.
ANA is seen more often in Lupus, but is also often high in Lyme. It would be an indication of how your immune system is reacting.
CR-P is a measure of inflammation, usually in the heart. Since Lyme can often affect the heart, it is good to check. Homocysteine is also looking at inflammatory markers for the heart, but like I said, could indicate low levels of B-12, very common with chronic infections.
Celiac or gluten problems are also common. The doc may just not trust that you really had the right tests done already.
If you can afford the tests, it is always good to look at any cofactors, or any issues that may need specific treatment. Most of us don't get well with abx alone, if we have been ill for many years. If the doctor knows how to treat Lyme AND is able to look at all the other factors involved, you are fortunate.
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