Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, a "false positive" is not the issue here. There can be some "overlap" with band 41 and other spirochetal infections but that's really another issue that is of no concern in your case.
A positive lyme test is showing what is there.
The TONE of what was said to you bothers me, more than if they were just wondering, in a neutral manner . . . they sound like they think they know it all and you know blip.
And I'm all too familiar with that tone and those words from various times. When it's unexpected, throws me off guard, then I tend to go blank, further confirming their suspicions that I'm out to lunch (in their mind).
Best, though, to not get defensive and take the stance they would WANT to learn the truth. (We hope.)
Tell that "someone in your life" they can learn more about lyme and other tick borne infections -- so they can protect themselves. (provide a couple links, etc.) -- you will give them some links if they want.
Tell them that your journey is for you to work out and you are glad they care, still . . .
Do not give them space to rain down on you. Be firm with your personal boundaries. Don't let them judge you. Do not let them judge you or your intelligence in finding the best resources for yourself.
Igenex "finds" positives because they are there, and they look at all the bands, not just a few as other labs do.
They "find" more positives because people who have been very ill, usually for quite some time, have done their homework first (&/or are guided by a LL doctor) and are fairly sure lyme is high on the suspect list.
More people with lyme use the lab than. No one without illness is going to ask for the test.
You need to cut yourself off from the line of fire. Be strong in your knowledge, in your skill of finding the best guidance and resources for yourself.
Tell others, "you'll understand more later so, right now, you can be sure that I know I'm on the right path."
"and I say think very kindly, but if you want to have a conversation about it, it's really important that you learn more first" -- "I can't teach you but I can share with you some of what I've learned."
"Still, it's really best for me to not discuss this because it's so very complex, most don't have the background just yet so it's frustrating and I need to focus my attention. We can still talk about other things, but it's best to leave this topic alone, for the most part - my energy needs to be rationed." -
[ 07-13-2014, 12:19 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- PRINT OUT THIS PAGE:
Links below for anyone to learn more, to protect themselves if they ever need to know this - they will be up to speed. It's a steep learning curve.
Q: false results?
There are many false negatives (because it's missed so often) but if it "sees" a positive, it's because it's there. Can't have a positive if it's not there to "see".
Still, even the best test, with the best lab (Igenex is the best lab for the kind of tests they run) . . . still, lyme can be very difficult to test. Someone with lyme may not register on a test.
Lyme is to be a clinical diagnosis. Yet, if there is a positive test, that, with symptoms, offers confirmation. And, because the CDC criteria is so misaligned, a person might have just one positive band and still be very ill with lyme.
A person might have zero bands show at all . . . and still be very ill with lyme. The test may show later, though. These are things that the LL doctors know all about.
In the "Diagnosing" thread, see the Western Blot explanation. Very important distinctions.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
See links here for: UNDER OUR SKIN documentary, and to go HULU to view
Book: CURE UNKNOWN is very informative and answers so many questions.
When Not Feeling Like Yourself Can Be Life-Threatening
Leah Ankers's doctors didn't believe her when she was feeling off, but she ended up suffering seizures and a coma.
- By Kira Peikoff - July 10, 2014 -
[ 07-13-2014, 03:03 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
- Backing up, can you say what the background / job is for the person who is confronting you?
That would help a lot in formulating your approach that would work best for communicating. For instance, if they are a health care professional . . . .
If they work at Kaiser or for the IDSA, NIH or CDC, Yale, Mayo, Johns Hopkins or just about any university medical center, they will not know the reality of lyme and testing. They've been told only what the IDSA wants (and it's so wrong).
See the "Wny You Need an ILADS educated LL Doctor" link in above post. That explains the two different organizations and how they differ.
ILADS is the one that is truly lyme literate; the IDSA is not.
And most journalists get it wrong because they don't know this, either.
How did they become such an "expert?" Where do they get their information?
Do not ask them . . . as that can start a "I'm smarter than you" war and you could lose if they think they know it all. But if you happen to know how come they think they know it all, that will help.
You have to think how they think so you know how to talk in a way they will be able to - maybe - receive what you are saying.
If they are just not an open minded person, anyway, I'd just plan to stay off their radar. Quite frankly, though, what they've already said to you tells me they speak without bothering to learn the facts first.
And that they would address you in this manner suggests they don't trust your intelligence, your ability to sort out such detail.
I hope they are not someone close to you, or live with you. If they are, though, know that there are so many myths and they are just likely relying on what they've heard. They've not heard from those who know yet.
Good luck with this relationship. You may have to put it on hold for a while (if that is possible) or be selective in topic choice. -
[ 07-12-2014, 11:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree with Keebler.
Print it out. Give it to them.
Then if the discussion is brought up in such a fashion as to make you feel doubtful, or reduces all your symptoms and sufferings, and makes you feel guilty for being sick, cease that relationship with that person.
I have learned the hard way (also a blessing in disguise), that having lyme weeds out the a-holes from ones life.
People either support you and want you to recover, or they don't.
And the ones that don't need to get lost.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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"Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!
So in the trenches of day-to-day medical practice, false positive borreliosis tests are not an issue. In retrospect, those 2 patients that did not respond to antibiotics may have also had babesiosis.
In my practice, many borreliosis patients also have babesiosis, another tick-borne infection that causes the same symptoms as Lyme borreliosis.
Babesiosis is caused by a protozoa, which is a different germ type than a bacteria, virus, fungus or yeast.
The placebo effect would not explain a 99% response rate. Those borreliosis associated antibodies should not be there, in patients with symptoms.
A placebo is like a sugar pill, that has no effect. A placebo effect occurs because patients believe in the pill they are taking, even though it is a sugar pill. The human mind causes the response. Placebo effects should more likely be about 20-30%, not a 99% response rate.
False negative test results are the real problem in diagnosing borreliosis. Research has shown that you have to do the right test (the Western blot), done at the right laboratory (one that specializes in testing borreliosis), and done the correct way (shipped express delivery early in the week)." -- Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I'm in a mood today, fair warning.
So, here's my line.
Do you think the average Joe Blow off the street, with no symptoms, is shelling out $250.-$1,000 of hard earned cash for Igenex testing because he likes to get his blood drawn for kicks and giggles?
Nooooo. Symptomatic Lyme disease people, with a medical Dr. agreeing high probability and therefore willing to sign off on the test submission,
that's whose blood is sent to Igenex.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Of course Igenex finds many positives, because only sick & symptomatic people are having the test done. Makes total sense.
Nikkabelle, I've had a similar unfortunate situation as you recently (I was also just recently diagnosed). People who say things like that just don't get it, and do not know the facts.
It's hard to ignore sometimes...people can definitely be so ignorant Posts: 62 | From Chicago, IL | Registered: May 2014
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