So I think we can all agree that there exists a great deal of controversy surrounding the accuracy and legitamacy of the various diagnostic lyme tests.
There is an equal amount of predjudice and fierce opinions on both sides of the lyme controversy.
Those of us who have suffered from the disease, or had a loved one suffer from it, remain 100% convinced that the current diagnostic tests are severely lacking, and insist that a negative lyme test in NO way indicates that a patient is not infected with lyme.
On the other side are members of the medical community who argue just as strongly, that in fact far MORE patients are diagnosed with lyme, then actually have it. They believe that lyme is grossly overdiagnosed, and that the phenomenon of "chronic lyme" does not even exist.
Whether or not there is any merit to the claims of this latter group is not my focus (and I think it's clear on what side of the fence the members of this forum sit).
My point is only that it is clear that there is much controversy on this topic, and the medical community is split down the middle, with each side holding absolutely opposing opinions.
So now for my question:
Does this type of controversy and lack of consensus exist for the co-infections (babesia, ehrlichia, bartonella etc), and the tests used to make a diagnosis?
To make things clearer, let me give an example.
In the controversial world of lyme, a patient who receives a positive test result for a chronic lyme infection will face intense scrutiny and criticism from those in the medical field who believe that chronic lyme doesn't exist, and that the tests used to generate this positive diagnosis are flawed and riddled with false positives.
My question is, is there similar controversy surrounding the co-infections and the tests used to make a diagnosis.
For instance, I have recently received a positive result for both babesia and ehrlichia (IgG and IgM test done by Igenex).
Would these results be disputed by "lyme doubters" in the same way that they would doubt the results of a test for chronic lyme?
Or, are tests for things like babesia and ehrlichia completely accepted by the entire medical community?
When my lyme doc gave me my positive test results for ehrlichia and babesia, she emphasized that there were NO false positives for these tests, and that there is not a serious doctor or lab in the world who would question the validity of these results.
Im wondering if what she told me is correct. Are positive results for babesia and ehrlichia truly accepted by the whole legitimate medical community, or would the same people who are skeptical of lyme, look at my results for babesia and ehrlichia and suggest that they are not at all definitive? Thanks-SH
Posts: 35 | From NJ | Registered: Aug 2009
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posted
I don't consider the whole medical community to be legitimate and informed about tickborne diseases, so if you are looking for a vote on test results, you will be wasting your time. Most of the medical community is ignorant about these diseases, and many do not want to be involved in any controversy; then there are the out and out liars who will say almost no one has tickborne diseases. Then there are the doctors who do know something, are mostly beseiged, and do not have the specialist and research backup that is needed. This is a very small group.
If you want to chase this a while longer, you could have one of the big automated labs like Quest or LabCorp redo the testing. But could you trust those results?
You are going to have a problem if you question everything your doctor says. Maybe you aren't ready for tickborne disease treatment but need to go to umpteen uninformed doctors and get all kinds of wacky diagnoses and doubt first, and waste a lot of time and money. That is what has happened to a lot of people on this board.
There are a lot of unknowns in this disease complex, so people who are looking for absolute assurance will have a hard row to hoe.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
If you haven't already read "Cure Unknown" by Pam Weintraub, read it! You will then understand that the "controversy" is artificial. You need to fully educate yourself on these diseases. You can't leave yourself just in the hands of the dr.
What your Dr told you about babs and ehr is correct. Especially if you tested positive for babs on the FISH test. That test actually detects the organism's RNA in your blood. Also, babs can be seen on blood smear slides.
The tests for lyme isn't really what is controversial about chronic lyme. The lyme deniers will acknowledge that someone has lyme, but they refuse to believe that lyme will persist after a month or so of antibiotics. Therefore "chronic" lyme is not real.
Besides, the clinical diagnosis is more important. Many/most of us had symptoms, went to multiple drs, and no one could figure out what was wrong. Lyme was a last diagnosis.
You had almost the exact same symptoms I had years ago. My dr could not explain it and told me I had Chronic Fatigue Syndrome (a set of symptoms of unknown cause). It took me more than 20 years to finally understand what was going on.
Where was the controversy? My dr got it wrong. Fortunately, you have more info available, so now you can get it treated in a more timely manner.
Don't doubt your diagnosis, but do question the dr's tx protocol.
James
Posts: 872 | From New York City | Registered: Jun 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
In my experience, your Dr is correct.
I lead with co-infections & "bury" the "Neuroborreliosis" near the end, when I fill out paperwork for a new physician.
Many know much less about the co-infections & when they feel you are more concerned with them than the Lyme, they seem to take a different attitude.
It's also easier for them to "buy" the possibility that your Lyme results are skewed when you have multiple co-infections.
I'd have to look it up again but I do believe that I had just read something about Anaplasmosis impacting the immune system.
I had been told by an LLMD that Babesiosis does this as well, though I don't recall whether I had personally looked up supporting studies at the time.
The more documented proof you have of multiple organisms, the more likely you are to be taken seriously by uninformed physicians.
Of course some PCPs (like mine) will stick their heads in the sand & try to pawn you off on an ID specialist or Rheumatologist anyway.
It also helps with insurance coverage if your Dr lists ALL co-infections & indicates, with the diagnostic pointer, Tx is for a co-infection instead of Lyme for Txs that would address both.
That helps disarm the automatic denial flag that's triggered by a Lyme Dx.
They all think they know everything there is to know about Lyme....co-infections seem to make some of them a little more hesitant to dismiss people.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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