posted
If you have a regular MD that you go to can they test you for Lyme disease?
I completely trust my MD and he has always listened to me about symptoms and done the tests even though they have to evidence of actual problems.
I think he would listen to what I have to say because he's the one who has been looking at all my symptoms.
I just wanted to know if he would be able to find anything out if I brought it up.
Posts: 4 | From Dayton, OH | Registered: Feb 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Yes they can test for Lyme but they are not likely to interpret the results correctly. And if you are positive they will not know how to treat you properly. You also need tested for coinfections.
FYI, I got my bit while hiking in Yellow Springs. If you suspect Lyme do find a way to get tested. It would be best if you found an LLMD to work with your primary care doc in Dayton.
Posts: 5237 | From here | Registered: Nov 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
They can and will test for Lyme, but they will start with the Elisa test which is a waste of time and money.
I think a LLMD is always needed when it comes to suspecting LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I still think a llmd is best to rule lyme in or out...
but i know because there arent that many of them that some people just cant get to one due to money, distance ect.
If you are one of the people who can't or if you get onto a waiting list for a llmd. I would ask your dr if he would run the test through igenex.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If you call Igenex and order a kit, your MD should be able to write the order for the testing to be done. I am pretty sure of that.
You should probably call Igenex though, or speak with someone knowledgable on this site to ask which tests you and your MD should order from Igenex.
Keep in mind that with Igenex you have to send the check up front, with the blood, and insurance may or may not reimburse you for the testing. However, Igenex is known to be much more sensitive, so honestly, I believe it is worth the money for the peace of mind.
An LLMD is the best one to interpret the results, and test you......but if you are short on funds and just want the testing ran, yes, any MD can run it.
Another thing to keep in mind is that more people seem to test positive after doing a month's worth of antitbiotics to bring the bugs out of hiding. But, I'm sure doing it now is okay too, though as others have said, the tests are not always accurate, so please don't stop suspecting lyme with negative testing if you really feel it's there.
Posts: 4590 | From Midwest | Registered: Jun 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Since we don't know your MD, it's really hard to speculate how he would respond to you asking for lyme testing.
I do know that I was tested three different times with just an Elisa test and if that doesn't come back positive, they don't look further. Mine was negative all three times, one being in the ER.
So without knowing the controversies, I let it go and assumed three different doctors couldn't be wrong. But knowing what I know now, but be aware that the Lyme tests the majority of the MD's will run are going to let a LOT of cases slip through the cracks.
Sadly, this gives you a false sense of security until too many years pass on and more and more damage is done.
I won't tell you not to trust your MD since there are always the exceptions to the rule. Just be aware that the testing he/she may run, may not be very accurate or through, which is why you will be hearing a lot of people saying to get the blood sent to Igenex.
They specialize in this kind of testing and have much more sensitive tests to pick up cases that weren't picked up the first, second, third, etc time around.
Good luck to you and hopefully you can either get it ruled out or diagnosed with a more accurate test than many of us were given in the beginning days of trying to find answers.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I say, clearly keep this doctor on your team, but have an expert to first diagnose and then, if needed, to guide you both.
Even if your MD orders the IgG and IgM Western Blots, the lab they will be sent to probably will not test all the bands. Only a few labs do.
And, as mentioned above, it takes an experienced lyme doctor to interpret the results - along with your history and clinical evaluation.
And this is not an infection that can rely on tests. You need a LLMD to assess you in person, do a history, etc.
You would also be assessed for other tick-borne infections or TBD (tick-borne disease) as lyme rarely is the only pathogen carried by those ticks that are infected.
And, while your MD may be a wonderful doctor and great person, without the necessary training, he simply would not be able to properly assess you.
Now, it may be that if you see an ILADS-educated LLMD, then - if anything is diagnosed (dx), your MD could offer back-up to you and your MD may want to talk with an LLMD and go through some training with ILADS.
Here are many links to help you better understand why we all suggest the most experienced LLMD for diagnostics. And, also, since not everything is lyme, there are some other chronic stealth infections to consider for anyone with symptoms that lead them here. Many LLMDs are familiar with these other infections, too.
Now - all that said, your current MD may be able to order the tests from IGENEX - be sure both you and the lab follow the IGENEX instructions precisely.
But your MD has to know that the test is just the first step. That even a negative test can not rule-out lyme AND that the CDC criteria is not really a wise thing to be concerned with.
And - it's important not to shout this all over town. If your doctor is to help you, it might need to be very low key. He could get a lot of pressure from the local ID (Infectious Disease Doctors) to ignore this.
Be very guarded with whom you share.
In addition to concerns about the freedom to treat, your insurance company may not reimburse the doctor for the time required to discuss all this.
And - whatever you do, liver protection is VITAL before taking any treatment. (Milk Thistle, NAC are just some of the options.)
Singleton's book discusses that, as does Burrascano in the last four pages of his 2008 guidelines.
Good luck.
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[ 02-14-2009, 03:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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A few of these links were advised by others above, please pardon any repeats.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
*** " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ." ***
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And may I add to the list of things to test for: enteroviruses. Using Arup lab. The enterovirus website is not quite operational yet, but it will have loads of info on it soon.
A friend of mine is now 95% well after being sick for several years (very sick). She has been on antibiotics for lyme/coxiella, valcyte for high EBV and HHV-6.
She saw improvements from both treatments. She is now almost well by treating the enterovirus with oxymatrine. She had multiple pathogens making her ill.
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The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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