posted
My LLMD appointment Monday was with a new LLMD. Old LLMD didn't do co infection testing due to inaccuracy and cost of testing. My new LLMD wants to test and I just don't have the money. Tests would be over $1,000.00 for what he's ordering.
Is it true that testing is not always accurate because of so many strains?
Do any of you who have had co infection testing feel like it was worth the money?
Posts: 911 | Registered: Mar 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
In my opinion, co-infection is absolutely critical and any treament for Lyme without knowing what you are trying to treat is problematic. It is true that some strains of Babesia for example are not testable with blood and a negative test does not rule it out, but it is still quite useful to know what you are dealing with. I get all the tests for Lyme and co-infections run every 12 weeks to see where I am.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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riversinger
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posted
It's true that the coinfection testing is not always accurate. However, it can be very useful, and point your treatment in a direction that you might not otherwise go. All of these infections have overlapping symptoms, and it can be difficult, based solely on symptoms, to decide how to treat.
It probably isn't necessary to test as often as Scott is doing. However, I do think it is a good idea to test before treatment, and again at various points as treatment progresses.
I had positive Ehrlichia tests after a year of Lyme treatment, including 5 months of doxy, treatment my LLMD was sure would take care of it.
I just recently had positive Bartonella tests, two and 1/2 years into treatment for Lyme, after previous negative tests. Bartonella requires very different treatment than Lyme, and without the testing, we may not have chosen those particular drugs.
It is common to test negative at one point in treatment, and then, as your immune sytem changes, to suddenly test positive. So repeat testing can be helpful. It is difficult when you are paying out of pocket. Some of the tests are more critical, or more useful than others, so perhaps you could prioritize, or maybe not do them all at once. This is something to ask your doctor.
IGenex is usually out of pocket, at least it was for me.
There's a lab in Jersey that takes my insurance, called MDL.
I sent you a private message.
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Out of pocket and covered by insurance are different things. Igenex does not accept insurance but my experience has been that my insurance company reimbursed me in full.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
My insurance did reimburse for a couple of tests from IGenex, but then when my LLMD kept ordering test after test after test, they stopped paying, understandably. So when I say out of pocket, I mean, you need to pay, up front, out of pocket and then hope to get reimbursed when you submit the receipts from IGenex.
When we just sent blood to MDL, I did not have to pay anything up front. THey will submit to the insurance company directly.
Sorry if I was unclear.
Good luck! Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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posted
Depending on your insurance it is possible that you will be reimbursed in part or in full for IGeneX testing. It works the same way with many of the LLMDs (like mine) who are not in the "network". You should find out what the process is with your insurance company.
Regarding testing, it is probably worthwhile to do although a lot of treatment can be based on clinical symptoms regardless of blood tests. If you don't want to do the expensive tests because of cost, maybe consider at least using an in network lab (like Quest) for co-infection testing. Although possibly not as good, it can't hurt. In my case, for example, the ELISA lyme test and babesia test both came back positive from Quest. The bart test, however, only came back positive from Igenex.
One final note...I don't think the co-infection tests are $1,000 from IgeneX. I think that it may even be less than $500 including the Babesia FISH. Not sure though if that's the comprehensive tests he is ordering or if that's even the lab that he's recommending.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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