Lyme test accuracy… confused

[2011Rio]

I recently had a lyme panel done thru Immunosciences lab which uses the ELISA test. It came back that I was postive for lyme, Ehrlichia, babesia, bartonella. I’m confused about whether this test is accurate enough to confidently go by the results because of stuff I have been reading on the internet. Also because of the comments my regular PCP made about the test. He said it didn’t make sense that I would have light up the test for all of them. I didn’t show him the western blot that was done. It came back with only one band reacting. Help help help!! Also, my naturopath has me on flagyl and I feel like it is tearing my stomach up. I’m just discourage at this point.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Also, is it sufficient to run just the ELISA and Western Blot if the ELISA came back positive (see above) but Western Blot did not?

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Maz]

Hi Rio,

I have not used Immuosciences lab, but their website claims greater accuracy in terms of specificity and sensitivity as compared to a standard Elisa test and a western blot. Did your doctor order this test? If so, you will need to talk with him/her regarding why this lab is preferred by them. Here is a link explaining the Immunosciences ELISA test:

http://immunoscienceslab.com/Lyme%20Trifold/TriFold%202010%20Pgr.pdf

Every lab will promote their own tests and methods, but the docs on the front lines – experienced llmds – are the docs who use these labs on a regular basis and have determined which labs produce the most consistent results for their individual patients and also if these results are consistent with their patient population across the spectrum of signs/symptoms. Lyme isn’t just diagnosed based on labs in other words, but by patient history, supportive labs (e.g lowered WBCs can correlate with Ehrlichiosis) and signs/symptoms.

Perhaps someone here has used this lab, Rio, and can share their experience of it. It’s not unusual for people to test negative on western blots, especially in the presence of tickborne coinfections, which can be highly immune suppressive. Ticks are “nature’s dirty needles,” so can pass a multitude of bugs and the sickest patients tend to be coinfected.

Have you asked your naturopath about ways to support your gut to offset the symptoms you’re experiencing from the Flagyl? It needs to be monitored regularly with labs (CBC and metabolic panel with liver and pancreatic enzymes) and a dose adjustment or med switch (e.g. Tinidazole or Alinia) might be needed.

Can you add a signature line with your diagnosis, meds and supps, doses and frequency? I think it might help with getting responses from others.

[2011Rio]

Hi Maz,
Thank you for the input! My doctor went thru the ILAD training for diagnosing and treating lyme and co-infections. Are they not pretty reliable on their education and current with everything?

I’m having a hard time finding the signature box, been looking everywhere in my profile.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Maz]

2011Rio wrote:

Hi Maz,
Thank you for the input! My doctor went thru the ILAD training for diagnosing and treating lyme and co-infections. Are they not pretty reliable on their education and current with everything?

I’m having a hard time finding the signature box, been looking everywhere in my profile.

Info to create your signature is here:.

https://www.roadback.org/forums/topic/your-user-profile/

Yes, docs who go thru ILADs physician training should be reliable as llmds. Different llmds, however, will have their preferences for various labs to do testing, so you will likely need to revert to your llmd regarding the results. Interesting that the Immunosciences lab provides some guidance in treating various infections on the PDF above, so it will give you some help in talking about that, too.

Rio, you have been so sick for so long and I truly hope this is your ticket to a return to wellness.

[2011Rio]

Thank You Maz, I just got diagnosed with Lyme and the co-infections last month. (have to go back and put that in my signature :)) It has been way too long with no real results with everything the RA doctors have tried, including the biologics. I kept telling them, all of them, PCPs, rheumatologists, endocrinologists, the weird symptoms I was having. Everyone seemed baffled and just sent me one my way. Oh I had a couple who told me its fibromyalgia because if you don’t know just give it the quickest label you think it might be. haha Not being able to work has made it almost impossible to get alternative help but I didn’t think I’d make it another four years if something didn’t change. So I found a doctor in AZ and was able to get the Lyme panel done. It was almost a relief to hear that something was found and we could start working on it. woohoo lol And it’s not all in my head. So if someone is reading this that is at their wits end don’t give up, keep searching. By the way the first LLMD told me I did not have Lyme and did not even test me. But I think time disproved that as the symptoms went on and additional ones occured. I will try to keep you informed and thanks for always helping as you can. 🙂

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Author]

Posts