Googling is fine if done with a good eye for what is valid and what isn't.
PubMed is better, but not easily read by laymen.
But here is a link that is easily understood. A Lyme literate NP wrote this and it was published in Public Health Alert----- not my first choice for good information but in a few cases it does print good information.
Off topic a bit is this about the CD57 tests, which she originally touted. Now with the C3 and C4 tests available apparently CD57 has been 'downgraded'.
"Although the CD57 marker has been a helpful tool, it has not been without its problems. We don't yet understand what confounding variables can skew the results. Some very sick patients start out with normal or above-normal CD57 levels.
Other patients' levels stay low and never increase with treatment, despite the fact that they are symptom-free and otherwise seem completely cured. There may be large day to day variation in the CD57 level as I observed in a study looking at twice daily blood draws over 3 days for both Lyme patients and well patients.
The level can increase or decrease as much as 50% within the same day. So the CD57 level can be a useful marker for some patients but it is not always reliable and consistent."
In the pdf are instructions where and how to send the blood test. Unless Quest referenced it out----(possible I guess) then perhaps another might be performed.
Also, a C3a is usually done at the same time.
There are many other illnesses and conditions that might give an elevated C4a.
"Patients often ask if there are other medical conditions that may lower or raise the C3a and/or C4a. Both of these complement products may be increased in normal pregnancy and in certain types of vasculitis (an inflammatory condition that destroys blood vessels). C4a levels are elevated in adult insulin dependent diabetes. Those who suspect that chronic fatigue syndrome (CFS) may actually be misdiagnosed Lyme disease may not be surprised to hear that C4a is also elevated in CFS patients. In fact the C4a is probably elevated in all sorts of infections, and therefore is not specific to Lyme.
The C4a is not as specific to chronic Lyme as the CD57+ level because it may be elevated in many types of infection, including other tick-borne diseases. However, in patients with known tick-borne infections, the C4a complement protein test can provide a useful way to determine initial degree of infection, to follow treatment progress and to aid in deciding upon treatment end. For more information about the C3a and C4a, please see the suggested readings below: "
In my case, just more "maybes" since c4a was elevated and my cd57 was low.
Often the C4/C3a tests will be performed serially so it might happen that your doctor will want more taken in the future. I know that mine were.
However, just as my CD57 showed------ I was ''perfectly healthy". Snort!
As the author said---"We don't yet understand what confounding variables can skew the results. Some very sick patients start out with normal or above-normal CD57 levels."
Although there may be reason to trust the C4/C3 tests---- it may happen that there are too many variables to make it 'trustworthy' for individual tracking.
But, again, the more data the better to help the researchers.
With so many lyme tests that are uncertain, unless one had the bullseye and the antibodies or pos western blot, It seems like diagnosis is just a guessing game. Like most people, I'm looking for a "no" or "yes" to move on or treat it, not more "maybes", how frustrating.
The lack of 100% sure and certain tests is like the olden days of medicine, where the doc's knowledge, experience and intuition were all necessary parts of diagnosis, instead of a print out from the lab.
That's a big part, imo, of the mess the medical community is in when it comes to Lyme: if the test doesn't say ***YES! INFECTION!*** in big screaming red letters, too many docs don't know how to make educated judgments about what is going on. Lyme being the stealthy bug that it is, there's not much to do but embrace the ambiguity and find a knowledgeable and intuitive MD.
That's why the right doc is so critical to getting an accurate diagnosis. It takes experience and understanding the interplay of the various co-infections to tease out what might be inhabiting the patient. A guessing game, perhaps -- but it should be an educated one.
The ability of Lyme to suppress the immune system is a big part of the problem when using W.blot/ELISA tests that rely on the immune system's reaction to the infection. The IGeneX test, which looks for Lyme bacteria's DNA in the blood, is direct evidence of infection, but MDs who do not accept IGeneX as valid are a problem, overlooking a key piece of evidence.
Yep, This CD57 and c4a were just a part the tests a LLMD ordered for the first round. this LLMD has good reviews and has spoken at a some lyme treatment seminars ect. There was so much other non-lyme testing, I was hoping for some definite negatives on these two - not the case.
The doc sounds like a keeper. Double checking and covering all the possibilities.
If only Lyme+ testing were as straightforward as one of those pregnancy test dipsticks..... Maybe someday. Till then, a good doc, kickin' meds, and a stout heart are the best offensive maneuvers out there. Hang on -- you're doing fine --
What the heck. My c4a in Nov. 2013 was 22,000, I got new results yesterday and it's up to 77,000. I've been on abx and never felt so sick in my live. LLND says you're getting sicker and it's time to try different treatment. I started IV this week. God I play this helps. Any ideas?
I mean the public health alert. Your 1st post on this thread. I guess what I want to know is how dangerous is this? What to do to get it down? List of causes? I've heard Lyme and mold can play a part (which I have both) anything else we may be missing?
Oh, o.k.------ I just tried to access Ginger Savely's article at Public Health Alert and couldn't get connected to it either. (It worked when I posted that article).
Then I went looking for Pub. Health Alert back/archived issues and found that now PHA is SELLING (!) a CD with the years from 2006- 2011, which includes that Savely article. So that may be why they're unattainable now.
So much for a rag that used to give away the issues! I received 50 of them free when they first started but after reading them I decided to give them away to someone who might be interested in that stuff. Frankly, I was surprised to see someone of Ms Savely's status writing for them considering who most of the other authors are. That's just my opinion, of course.
I may have a copy of it saved but Ms Irons has already jumped on my neck for an alleged violation of copyright issues for another article years ago and my neck is already sore from Lyme disease so........:)
I'm sure you can find a copy of it somewhere on the Internet---- which is forever. And lazymoose posted an excerpt of it in another post on this thread.
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