posted
Does anyone know if accuracy is improved by stopping abx before taking the Igenex test?
Igenex said the only known test that can be affected by abx would be the PCR testing but my LLMD told me to stop treatment beforehand.
Thanks for any feedback!
Posts: 20 | From East of the Sun and West of the Moon | Registered: Jun 2014
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Keebler
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posted
- If your LLMD suggests stopping antibiotic prior to the test, please follow their instructions.
I think it would be best. Stop several days ahead, though. Also avoid any herbs that are antimicrobial in nature. I would go so far as to say avoid all supplements for a few days prior, too.
You want the test to be able to mount the best results. While LLMDs who are ILADS educated - and IGenex, too, may be able to "interpret" or understand some subtle effects of antibiotics or other anti-microbial supplements,
you may need this test to be shown to other doctors in the future. They won't give any leeway at all to say "well, consider antibiotics" were taken at the time.
That's my take. I also would not take any other herbal or even nutrient supplements at all for a few days prior.
I suggest even avoiding Green Tea, beyond maybe one cup a day.
For a few days to have your body as real as it can be just on its own (still with good food, no alcohol or strong coffee, though) . . . well, I think that will give you the best chance.
If you have even herbs that help reduce inflammation, you might not get the truest immune response in your lab work.
Also taking the blood sample mid-afternoon -- while still leaving time for blood sample to be prepared by staff for shipping and for the FedEx pick-up for overnight shipping.
You'll have to check ahead of time with the lab personnel for the timing of this. And be sure they will get it all right. Hopefully, your LLMD has suggested a specific lab for the blood draw so all is in proper order.
Mid-afternoon, very often with lyme, the body will mount a stronger defense. That's when my fever would come up a bit. I think there may be a better chance of the blood then showing the immune response.
If you have recently - even in the past 6 months - taken any steroids -- that could make the test not read at all, though. Be sure to tell your LLMD if that is the case. Other immune suppression, too, such as "biologics" . . . .
Have your blood drawn early the week and consult Igenex website for exact preparation and shipping instructions. These really matter. -
[ 02-21-2018, 04:28 PM: Message edited by: Keebler ]
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Keebler
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27 (or so) Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, thank you for the feedback. I appreciate the tips (I had not heard of the afternoon immune response being stronger, for example).
To be honest, I'm just afraid of discontinuing treatment for any amount of time as I was very symptomatic very quickly.
Thank you for the link - I will read up!
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Keebler
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- I'm not sure why you are getting the test, really, though. Lyme is a clinical diagnosis and if treatment is helping, that's a major clue that the clinical diagnosis is correct.
Or, if you have had positive lyme tests in the past, they are not just voided due to passage of time if you are still ill.
As you have a LLMD and, I assume, that is private pay, is there some reason you are now set on taking this test?
There is no test that will ever show the absence of lyme. No test to show you are "over it"
Of course, there can be other tick-borne infections that may need to be assessed / addressed, too or maybe instead of for certain time periods but it stands that if you are trying to figure out if lyme is still with you, this test may just be an expense that is not going to achieve that black and white answer.
Your very body is the best test result. If lyme was diagnosed and it has not yet resolved, that's your answer (though it's never the only thing to address / treat). My opinion, anyway. -
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posted
I was on abx the very next day after finding a tick on me and had become very sick overnight.
4 mos of combo abx later, I am still symptomatic and going off azithromycin recently due to heart issues made me worse. I now have new symptoms dealing with my brain.
The last visit I had my LLMD suggested considering testing if I was still symptomatic at the next follow up. So here I am. Basically wanting to know exactly what we're dealing with if 4 mos of multiple abx hasn't done the trick, so we can focus on whatever infection it is.
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Keebler
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posted
- After the tick bite 4 months ago, where you became immediately ill,
was there a BULLS EYE RASH - or any other kind of rash?
If so, that's better than any test. Of course the rash is often missing with lyme but, if there, it's clear.
I'm so sorry to hear of your ordeal. I am especially sad, though, as it seems your "LLMD" may not be all the much "LL" (lyme literate) if they suggest you should be all well by now if this is lyme.
Brace yourself - and people can get better - but four months of treatment is usually just a start. I think it's just not possible for treatment to work at this 4 month mark, this limited amount of time, in lyme land (though I know it's a long time for you).
I usually takes at least one full year, maybe 3 or 4 years for treatment to resolve a typical case of lyme. Some can take longer as many are very complex.
That you caught it early is good but you've been posting here for far longer than four months so it seems you may have been dealing with this before / still?
Again, please, don't despair. I'm sorry to bring up all of this but I went so very long with no information and then wrong information and it really cost me so I hope to prevent that for you.
If money is no concern, it can't hurt to test but most likely your money is very tight. Thinking that lyme should be gone by now and that a test will tell you that might mean that you would not have that money to spend otherwise on coinfections tests (which I think are more important) or on treatment.
If you do get a lyme test, can you test for both Borrelia burgdorferi and Borrelia miyamotoi? If you test for only one, I'd go for the B miyamotoi as it is the one that seems to make people sicker.
Have you been assessed for other tick-borne infections, too?
Lyme is likely the most evident from a tick bite (and that could be Bb or Bm - two different strains of many more)
but it may be that testing for babesia, ehrlichia, anaplasma, bartonella, etc. might be a better bet and that could also help refine the treatment protocol.
Another point as treatment seems so hard on you: what is your LIVER SUPPORT and your ADRENAL SUPPORT. It may be that if those are changed around a bit you may be able to better tolerate treatment.
Though, good to be off Azithromycin for your heart, of course.
posted
Igenex is correct. The idea of interference is based on old assumptions. Many now have the opposite view in that an antibiotic challenge can provoke a positive test.
If you were bitten and became acutely ill, testing for borrelis is probably a moot point. Consider testing for coinfections i.e Bartonella and Babesia (both Microti and Duncani strain).
Also, if you became symptomatic very early after the bite, consider Ehrlichia. Lyme and the other cos. are slow growing and usually take a bit of time (weeks) to present.
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Keebler
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- Oh, my. Apologies. I now do recall some detail about the antibiotic "challenge" --- but it's important to know that method is a "challenge" after not taking them for enough of a while to have new reactions in the body to them..
My mind was working only on the "ongoing" treatment so the "challenge" method just didn't come to my mind. Ongoing use, I feared, would not elicit any differences of action. My thoughts, though, only that.
And, if cystic medications are not also on board, sometimes "ongoing" antibiotics may just be suppressing spirochetes but was too tired to adequately verbalize this aspect. I still can't.
Of course, IGenex staff has the best scientific detail. Still, sometimes, if you ask your LLMD why his idea differs, he may have a very concrete reason, too.
Many do say that the "challenge" approach helps a lot for some specific tests - but it's to be done in a certain way. And I'm talking more about the Western Blot tests.
My apologies, again, this points out that my vertigo challenged thinking, selective memory & trouble writing crisp & clear sentences can be a risk. I will be more careful.
Good luck with whatever you decide. -
[ 02-22-2018, 02:41 PM: Message edited by: Keebler ]
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Keebler
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posted
- Badtick,
So glad you joined the conversation. -
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posted
I have been told both. Many years ago it was recommended to be 4-6 weeks off antibiotics prior to antibody testing. That's pretty rough if you are acutely ill.
I spoke to the folks at IgeneX when I got tested last year along with my ILADS Dr. They both keep stats on this. I
have also been performing these immunoassays for a number of years but there is much to learn regarding how timing could affect response.
There are many variables but from what I gather the most critical is the host ability to mount a robust immune response. This isn't necessarily dependent on infection load due to the immune suppressive nature of the organism. That's where it gets confusing.
The die off from antibacterial therapy is believed by some to help trigger an immune response. This is why many patients turn from negative to seropositive post treatment.
Either way, the antibody test remains a poor measure of treatment progress due to the immune suppressive nature of the borrelia and the fact that testing doesn't follow the typical IGG/IGM pattern for early or late infection.
If you are bitten and fall ill, it's almost a given that Lyme is a player. Co-infections are another story. Sometimes it is good to break from treatment for a period to assess the situation.
(breaking up a paragraph for easier reading for many here)
posted
Thank you for all the very helpful information. It sounds like I'm safe to be on abx at this point for Igenix, then?
I'm being tested for lyme, relapsing fever, babesia and bart but not ehrlichia. Ehrlichia, I was told, would have cleared up already. Miyamotoi was mentioned as a distinct possibilty, however, I do not see it anywhere on the Igenix test order requisition.
I've also been put on cefdinir to replace the azithro. Not sure what that targets but hopefully I can tolerate it.
Thank you again for all the help!
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posted
So after having stopped abx Weds in order to take Igenix next week, I was bit again today. I found a tick on my upper ankle and have had to resume the abx.
Would there have been anything in my system from Weds morning? Probably not, right? My toes, ankle and knee started feeling achy and stiff not long after, so I'm assuming not.
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