posted
Though I can point to no Lyme symptoms and after being on several different antibiotics in varying doses and combinations for a year now, I test positive for Lyme in several bands with Igenex. This result is pretty much the same result as a test performed a couple of months earlier. Can someone explain why this happens? I test negative with the Quest Western Blot test, but also positive with the Elisa. I'm confused about what course of action to take.
Posts: 11 | From Mid-Hudson Valley, NY | Registered: Mar 2013
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
I have no idea why. Because the tests that are approved are not how you say Perfect. I think the die off may be a reason.
I'm not a Dr. I'm a patient. There will be others along soon that can guide you to web sites regarding your questions.
Are you having many or few Herxes. I just want to keep your post towards the top.
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
You state you have no symptoms. (great!)
I have been told by my former LLMD, and I agree, no symptoms, no treatment.
-------------------- 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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posted
Just curious - have you done any recent bloodtesting to see what various levels are? If any turn out to be low, you could still consider boosting various systems with supplements to keep your body in the best supported health condition and that way, perhaps stave off any relapse.
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Once you have lyme, your test will always show positive."
Not so for me. My first Lyme test was CD positive and I had barely any symptoms.
The second time I got infected with Lyme I had horrible symptoms. I've had two tests since then and am CDC negative on BOTH even after an antibiotic challenge. I'm Igenex positive, but the CDC is negative so results changed to negative for me.
The sicker you are, sometimes you're more likely to get a negative test because your body is having trouble making antibodies.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I can only speak for myself, but if you feel good and have no lyme symptoms, and you don't plan on conceiving or breast feeding anytime soon, I would ignore the positive test.
Sounds like your immune system has it in check.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say you are feeling well but it's not clear if you are still on treatment.
Sounds like you are on a good treatment plan now -- and that it seems to be working. If that is the case, your LLMD would be the best guide for when it's time to transition from active assertive treatment to mainly support methods.
Or has your treatment ended and you are holding your own in a good solid remission, feeling good? If so, continue to support, continue excellent health habits and enjoy.
Either way, though, it's very good news as it shows your plan has been working and you are headed in the right direction.
I would not re-test. If you are still treating and wonder if it's time to transition to support, take it slow. Your body will let you know how to pace that.
Same with if you've been off treatment for a while and enjoying solid remission. Your body will let you know if it ever becomes time again to revisit this matter. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks everyone for your replies. I am currently taking three antibiotics as well as about a dozen supplements and have kept to a strict diet. My LLMD is advocating keeping on the meds which I have been on for just over a year now. I had initial symptoms that were very slight (tingling, sharp toe pains, irrurability, restless nights, and a few more). I've Herxed a couple of times with the last episode in the summer upon becoming dehydrated (don't become dehydrated!). Sometimes I have experienced fumbling speech, which is not noticeable only to me. I've attributed it to, once again, lack of sufficient water though I drink 80ozs of lemon water per day sweetened with Stevia.
So, though no symptoms for more than four months, I should continue to take the ABXs? I know some LLMDs treat symptoms and don't put much into testing, and others look to the tests as major guidance. I remain, confused.
Posts: 11 | From Mid-Hudson Valley, NY | Registered: Mar 2013
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posted
Look to your doctor for guidance, of course, but a lot of doctors want to treat for awhile after the symptoms are gone.
If I were going to stop treatment after the symptoms have passed, I would wait for late spring or summer. Lots of people relapse in the winter.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Excellent advice Mary Part.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Judie .. but you are talking about CDC negative. That is not the same as "negative." (at least not to most lyme patients and most LLMD's)
It is true that the test can change. Different bands can show up or not show up. And very ill people will often not come close to showing a positive. That happened to me.
But I would make sure all symptoms are gone for at least 2 months.. more if you like.. then try going off.
Clean up any remaining candida/yeast and take GOOD CARE of your health in the future so you don't relapse.
Continue to take high quality probiotics too!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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