Spoke with my LLMD in NC; the only thing that showed up was band #45 on the Western Blot, which the doc said is a protein coating on Borellia. Any other info on 45?
She did Quest because of cost (though she will do IgeneX if you request) and said a positive on Quest is like gold (so far as docs taking you seriously), but negatives don't mean much to her, so prefers to use them for initial tests.
Negative for Babesia, Erlichia, Bartonella. However, I've had Q fever at some point, so possible exposure to other TBIs then.
She said I probably do not have Borellia burgdorferi, but judging by the symptoms, most likely some strains of Borellia and Bartonella that the tests don't catch.
The plan is Doxy, Azithromycin, and Rifampin, with plenty of probiotics. We'll try for the Lyme and Bartonella first, and if I have lingering symptoms treat for Babesia.
Any tips for the Azithromycin or Rifampin? I've been on Doxy about a month with no problems.
Posted by ralphi (Member # 33834) on :
Thanks, stillwater!
Yes, she said to start slowly and leave a week or so in between in case I have side effects.
Safety labs once a month, and plenty of VSL #3 and water.
Posted by Lymetoo (Member # 743) on :
Band 45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
------
I personally would want a WB from Igenex if Quest is negative. Quest does not test for all of the bands.
Posted by ralphi (Member # 33834) on :
Stillwater, I have liked her so far--she's very knowledgable and caring.
Lymetoo, she thinks I don't have Bb, but maybe some other type of Borellia that doesn't show up on Western Blot--aren't the extra IgeneX bands specific to Bb only?
Posted by TF (Member # 14183) on :
Just know that the Quest tests are generally worthless. If you get a negative from Quest or LabCorp on lyme or any coinfection, it means absolutely nothing--except it DOES mean, "We have lousy tests; so what do you expect? You expect us to find your diseases?"
I would really love to know why she thinks you don't have borrelia burgdorferi but thinks you have some other kind of borrelia.
What other kind of borrelia does she think you have? and why??? B. burgdorferi is pandemic in the U.S.
Bb doesn't show up on the LabCorp and Quest Western Blot in at least 1/3 of the patients that have it, maybe more. So, what is her opinion based on? Did you tell her that you found a tick with a white spot on its back attached to your body, or something like that?
Is she talking about STARI (b. lonestari or Masters' disease)--known as "the other lyme"? That will show up on an Igenex lyme test, as I understand it. See this post about it:
Unless you are really strapped for money, why not spend the money and test with Igenex and find out what diseases you have? That is what Dr. Burrascano always recommended in his talks and it is what all the lyme doctors that I esteem highly say a person should do.
Why not call Igenex (igenex.com) and ask them to be sure this information about STARI is correct. They will be happy to take your call.
Posted by ralphi (Member # 33834) on :
Thanks for the advice, TF, but I have very little money (I'm not working) and my doc treats mostly by symptoms anyway since the tests are so unreliable.
I have really clear symptoms of Lyme and Bartonella, so we're starting with that.
She agrees that Quest and Labcorp negatives are worthless, but wanted to try and get a positive anyway, since my insurance covers Quest and a positive from those labs is good "proof" for skeptical docs.
I didn't find a tick at all; she said there are different borrelia strains and that the negative Western Blot could very well mean I have a different strain, though she said the test isn't awfully reliable.
I think maybe she is of the opinion that some of the "Bb" cases that slip through the test aren't burgdorferi at all, but another variety we don't have a test for (and may not even know about).
She said the same about my Bartonella and Babesia test--that there are hundreds of different types and the test only looks for a couple.
The antibiotics I'll take should hit the different strains anyway.
Posted by seibertneurolyme (Member # 6416) on :
Ralphi,
I would save your money and skip any more testing at this point. Start treating and see how it goes. You can always retest at any point in the future.
Hubby has had multiple totally negative Western Blots from IGeneX, Quest, LabCorp, MDL, Stoney Brook and a couple of other labs. By negative I mean all bands totally negative -- not even any indeterminate bands.
But he does have one positive PCR test from IGeneX years ago and 2 posiitve recombinant antigen tests from MDL (test not done anymore). Plus he has a test from Immuno Sciences which although it was negative overall did point to various proteins etc from borrelia exposure.
You might get lucky and have a positive test from IGeneX or at least have more bands show up. But if you are satisfied with the current diagnosis and treatment plan then focus on that and don't spend the time and energy and money chasing ghosts. Sure wish we had some of the dollars back we spent on testing over the last 10 plus years.
As for bartonella -- in my opinion a bloodslide from Clongen lab is the best and cheapest test. But their prices have gone up and it is not as cheap as it used to be. That is definitely one infection that generally you can tell by taking the correct meds if you really have it or not. Unfortunately though it is not always so easy to get rid of.
Bea Seibert
Posted by Kudzuslipper (Member # 31915) on :
Ralphi,your doctor sounds great. Good luck with your plan. Keep us posted.
Posted by ralphi (Member # 33834) on :
Thanks guys!
I've only been ill for 3 months now, as well, and took my first antibiotcs 1 month ago, so it's still early in the process.
My only hesitation with quitting the testing is to take so many antibiotics without solid proof that I have a tick-borne illness at all (I'm very much an empirical evidence kind of person, so I'll only be truly convinced when I start to feel better).
But the only other option is to take nothing and stay miserable, so there's not much to lose by trying Posted by TF (Member # 14183) on :
What other kind of borrelia does she think you have? and why does she think this?
Can you remember what she said?
Posted by Lymetoo (Member # 743) on :
I thought Bb had many many strains.. many that are not covered by testing... but they are still Bb...?
FYI...The basic WB thru Igenex runs around $200. I just wanted to be sure that you knew the cost.
![[Wink]](wink.gif)