did I mess up my chances of accurate testing?

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littlevictories
New Member


Date Joined Nov 2017
Total Posts : 19
   Posted 1/19/2018 1:31 PM (GMT -6)   
I just got back from an appointment with an infectious disease specialist. Overall, it was a relatively positive visit (the doctor really listened to me and seemed very thorough). I'm proceeding with caution, but due to insurance/finances, I decided to start with ID.

I was tested for Lyme in November, but it was a Lyme titer test, which I understand is for acute LD, and it (unsurprisingly) came back negative.

I have been researching ways to increase sensitivity of tests in forums here. I'm now concerned that I may have hurt my efforts instead of helping. This is what I did:

I continued taking small doses (10 drops a day) of Japanese Knotweed this week prior to my visit.

I took one dose of doxycycline (100 mg) on Tuesday morning, thinking it would help stir up antibodies.

My question is: did I potentially decrease my chance of a positive test as a result of taking the doxycycline? I was going to take even more than one dose, but I'm glad that I didn't.

I couldn't find any information about production of antibodies with antibiotics, and of course, I know that they kill the bacteria that the tests are looking for.

I'm really beating myself up about this... my mom told me not to worry about things I can't change, which is good advice, but I'm still worried. I'm hoping maybe some folks on here with more experience / knowledge can either put my worried mind at ease, or confirm that I may have negatively impacted my lab tests.

I can't recall the name of the test my doctor ordered -- he said it's the "latest." It isn't the ELISA & Western Blot, though he did mention both tests and said that the one he is ordering is beginning to replace these tests. I need to find out what the test is - I'm not sure if it's looking for antibodies or the actual bacteria.

He also ordered a test for Bartonella hensalae IgG/IgM, Epstein-Barr virus DNA, quantitative (I've already tested positive for reactivated EBV, but apparently this digs deeper? not really sure), as well as a handful of other tests.

greatguy
Regular Member


Date Joined Dec 2017
Total Posts : 104
   Posted 1/19/2018 1:36 PM (GMT -6)   
As i understand correctly, in order to get a push in production of antibodies when there are none, one needs to take abx for at least a month. Anything less will not increase your chances, because you will just throw abx for too little of time to bring those nasty bacterias out of tissues. To bring them, you need months of abx, just as you would take for treatment.

Correct me someone if i made a mistake.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/19/2018 1:39 PM (GMT -6)   
There are so many theories of how to increase your chances of getting a positive test when you have these infections - I'm not sure which ones actually work, though.

I do know that after 12 months of abx treatment, I was finally able to test CDC positive for Lyme and RMSF, but nothing else (I had nearly every infection, according to my LLMD). So this seems to support the thought of abx helping to get the bacteria recognized by the immune system and getting those ever so important antibodies.

But, like you said, it also depends on what test the doc ordered. Hopefully it's one that you will test well with!!!

Do you know if the ID doc is willing to diagnose by symptoms, as the CDC says they should?

" Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods."
/www.cdc.gov/lyme/index.html
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

greatguy
Regular Member


Date Joined Dec 2017
Total Posts : 104
   Posted 1/19/2018 1:42 PM (GMT -6)   
CDC advices to diagnose by symptoms like rash and recent tick bite, but that is not the case for over 80%, so basically CDC isn't in any way more helpful than IDSA.

littlevictories
New Member


Date Joined Nov 2017
Total Posts : 19
   Posted 1/19/2018 1:50 PM (GMT -6)   
greatguy and Traveler -- thank you both for your thoughts.

That makes sense, greatguy. I was on antibiotics in November for about two weeks after going to the ER -- the MD preemptively prescribed it, but my PCP wouldn't order any additional tests, and I didn't see any reason to continue treatment (plus, no one to prescribe additional or proper courses of abx!).

It was after taking abx in November that I started developing rashes/markings that resemble Bartonella and ACA rashes.

Traveler, that is an excellent question (about diagnosing based on symptoms). I will have to remember to ask him directly next time I see him, but my guess is that the answer is no. I need to contact Girlie about finding an LLMD in my area, and just trust that I will be able to work out the financial details. My health is certainly worth it.

I just wrote to the office to request the name of the test and to ask if it is looking for antibodies or bacteria, or something else. I'll share that info when I get it.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 334
   Posted 1/19/2018 1:55 PM (GMT -6)   
He probably tested you with the "newer" C6 ELISA. Which is claimed to be more sensitive in early infection.

Although Igenex has a brand new test I haven't heard much about.

I doubt 1 100 mg Doxy would change test results much. I read Olive Leaf Extract can provoke the immune system.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 1/19/2018 2:01 PM (GMT -6)   
Igenex has two new Lyme tests - they appear to be similar to what Armin Labs has.
Also new test for Relapsing Fever

- Lyme ImmunoBlotIgM and IgG
- TBRF ImmunoBlot IgM and IgG
- Lyme IGX Spot
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 1/19/2018 1:04:44 PM (GMT-7)


littlevictories
New Member


Date Joined Nov 2017
Total Posts : 19
   Posted 1/19/2018 2:06 PM (GMT -6)   
Thanks Missouri and Girlie for the info.

Missouri, it was C6. Interesting that you say it's claimed to be more sensitive for early infection. I've been sick for over a year. Thanks for your thoughts on the doxy... I'm was born worrying... and I'm so desperate for answers.

Feeling really anxious. Just sent you an email Girlie... I think it's time to find an LLMD.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 334
   Posted 1/19/2018 3:10 PM (GMT -6)   
yes find an LLMD!!!! The crappy ELISA tests are not sensitive enough (C6 or not).

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 1/20/2018 2:07 PM (GMT -6)   
As useless as CDC is, I personally had what's known as a "plaque" rash, not a bullseye, and if you look on CDC's rash pictures website, you will find there are a *variety* of rashes that count as Lyme/EM rashes, and if my imbecile doc had known any of that (I had that rash, a known tick bite, a pos. Igenex IFA test for Lyme, and a negative W. Blot initially that turned pos. within several months), I should have been properly diagnosed immediately based on the plaque rash I took pics of and the known tick bite, as well as very rapid symptoms.

So the rash/bite are mostly dumb as criteria, but it's important to know the range of rashes considered legit. even per the CDC at this point anyway, as it can help with diagnosis.

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 1/20/2018 2:13 PM (GMT -6)   
Again, trust me, I'm in no way saying anyone should ever trust the CDC -- just that this could be persuasive to some docs who don't know what they're doing and aid in diagnosis. This page shows all of the rashes considered Lyme/EM rashes now (and those that are not): https://www.cdc.gov/lyme/signs_symptoms/rashes.html

I personally had the "plaque" version but my doc was an idiot about that, among other things, at the time (not seeing that doc any more, don't worry), leading to delayed treatment. But because the "rash" is considered so diagnostic, it's good to know what options there are to display in front of a doc w/ the CDC's own guidelines!!

As you can see, many of the rashes don't have the "central clearing" that's typically associated with a bullseye rash, so it actually is important to search all over your body for *any* rash (plus other rashes are associated with bartonella, though most docs are even less likely to get it about that). I've heard of EM rashes lasting months or even a year, or appearing after an antibiotic challenge, too.
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