Best way to get a doctor to explore possibility of Lyme?

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KT954
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Date Joined May 2018
Total Posts : 2
   Posted 5/11/2018 3:57 PM (GMT -6)   
Hi, Im not sure I have Lyme but I’m so tired of no answers. I have been struggling with so many weird seemingly jnrelated issues since “mono” diagnosis a few years ago (they were never sure about that but hematology oncology decided that it was the best answer they had). Problem is I’ve never gotten bettter. Brief periods maybe, but if anything I have developed so many other weird symptoms that don’t seem to fit into a perfect diagnosis so the doctors are at a loss. I find it hard to believe that i went from completely healthy to this without it all being related somehow...I talked my dr into testing even though she said she was sure it wasn’t Lyme, she did ELISA test and results were .87 (at .90 they would’ve done western blot). I don’t know much about any of this but given that they have no other ideas should we try western blot anyway? Any other suggestions for trying to determine Lyme diagnosis?

Girlie
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Date Joined May 2014
Total Posts : 32610
   Posted 5/11/2018 4:58 PM (GMT -6)   
Hi KT954 - welcome!

That's the same as the test I had (BC, Canada) - the IFA (similar to Elisa) was negative so they didn't do the WB. Not that it would have been positive...anyway.

Would your Dr. be willing to sign an Igenex Lab request? if so, then order a test kit, and have the Doc sign. Get the blood drawn and fedex to Igenex. (on a Monday or Tuesday latest - needs to get there before the weekend)
The Lyme WB IgM and IgG costs $250.


If you can't get a Dr. (any Dr. can sign - including a Chiropractor, Naturopath...) then there's another way - through TrueHealthLab (but it costs more)

With your history/symptoms, I think you're wise to look into lyme.
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

Rare Squirrel
Regular Member


Date Joined May 2018
Total Posts : 38
   Posted 5/11/2018 4:59 PM (GMT -6)   
Best thing to do at that point I think would be find a Lyme Literate doctor or naturopath. I knew I'd have problems with my regular doctors so I searched to find someone in my area who has experience with Lyme and it's co-infections. They are the best for knowing which tests to run and in fact my ND ran the Western Blot without even doing the ELISA first. Another MD did run an ELISA on me with some other tests which I didn't even realize they were doing but it came back positive while my Lyme according to CDC standards came back negative. I only had IgG bands 23 and 30 and IgM band 23 on my WB so according to all rational and logical interpretation, it's a pretty clear indication that I do indeed have Lyme. But because the CDC is neither rational nor logical, my MD's say I don't based solely on that 5 IgG or 2 IgM band requirement...ignoring the fact that all my symptoms match Lyme and Mycoplasma better than any other diagnosis on the planet. What happened to if it looks like a duck and quacks like a duck, it's a duck? That the simplest explanation is usually the right one? I thought they taught the Hippocratic Oath in medical school, not hypocrisy!

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 336
   Posted 5/11/2018 5:04 PM (GMT -6)   
YES! do the Western Blot.

Rare Squirrel
Regular Member


Date Joined May 2018
Total Posts : 38
   Posted 5/11/2018 5:04 PM (GMT -6)   
Ah I see Girlie responded just before I did! I'm actually looking into doing the Igenex lab test myself to attempt to 'prove' to my MD's that I have it. Although do you know if MD's will believe a positive Igenex lab test result? If my Igenex test comes back the same as my other WB test with 2 IgG bands and 1 IgM band, they will consider it a positive? This testing stuff just infuriates me! I hate that you seem to have to prove your condition before you are allowed treatment for it!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32610
   Posted 5/11/2018 6:04 PM (GMT -6)   
Rare Squirrel said...
Ah I see Girlie responded just before I did! I'm actually looking into doing the Igenex lab test myself to attempt to 'prove' to my MD's that I have it. Although do you know if MD's will believe a positive Igenex lab test result? If my Igenex test comes back the same as my other WB test with 2 IgG bands and 1 IgM band, they will consider it a positive? This testing stuff just infuriates me! I hate that you seem to have to prove your condition before you are allowed treatment for it!


Doubtful your 'regular' MD will even treat based on the positive test result...and even if they do, it will be for a couple of weeks ..maybe...

But, you can take your test results to a LLMD.
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

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 273
   Posted 5/11/2018 6:22 PM (GMT -6)   
I think urine tests be even better (more likely to come out positive), but I don't know much about about tests.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32610
   Posted 5/11/2018 7:04 PM (GMT -6)   
Notime4lyme said...
I think urine tests be even better (more likely to come out positive), but I don't know much about about tests.


The only urine test that I have seen good results is the DNA Connexions test.
No Dr. needed for that one.


But ArminLabs, Igenex...I'm pretty sure the blood tests are the ones recommended.

That's what we mostly see here on the forum.
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

KT954
New Member


Date Joined May 2018
Total Posts : 2
   Posted 5/11/2018 7:51 PM (GMT -6)   
Thank you everyone, this confirms what I was thinking, I will work on getting some kind of follow up testing. It is such a frustrating process. Rare squirrel you are right on—if it looks like a duck...we are going to send you ten more specialists to say they have no idea hahaha. And thank you girlie, the more I dig into Lyme the more it seems to fit my odd list of symptoms, but I would just love an answer so I have an idea of how to move forward!

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 5/12/2018 3:40 PM (GMT -6)   
I went to a naturopath, explained all my weird symptoms, told them all the tests I'd currently had done, and wanted to know if they could get me a lyme test to rule that out. They ordered me one, Igenix, and it came back positive. I had a number of MDs tell me it wasn't lyme, and shortly before I got the Igenix test done, I had an urgent care dr who did give me the lyme ELISA and it was negative. So glad I got that Igenix test even though I paid out of pocket for it.
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