Hi everyone. Thank you for taking the time to read this.
I just want to the LLMD last week. Dr. R has a long history with treating Lyme and co-infections and thinks I have Lyme, Bart, and possibly one or two other co-infections.
He was lovely, as was his physician's assitant.
He stated he was 90% sure and wants to put me on IV meds immediately. The office is working on approval now--freaking insurance.
He sent my blood to Labcorp, though, which I found interesting. I assumed it would be Igenex, particularly since I had been tested three months ago and had a negative test that read: "Lyme interp corrected from positive to negative."
I know that diagnosis is clinical and I fully intend to go on the protocol as soon as I get approved or before (if I have to pay for the first month until I get approved, I'll figure something out), but a positive result would help with future battles with insurance.
Should I be worried? Thanks, again.
Posted by CD57 (Member # 11749) on :
Up for Allanah....there are quite a few Dr R patients on here, perhaps they will come along and weigh in. My LLMD uses Igenex for the TBDs, but Labcorp for some other stuff.
Posted by Lymetoo (Member # 743) on :
Labcorp is OK for mundane testing, but not for Lyme. MAYBE your test will come back positive.
Did you have Quest before??
The problem is that neither lab tests for ALL the possible bands.
Therein lies the problem.... but you could get lucky.
Posted by al369 (Member # 15113) on :
cd57, thank you.
I hope I get lucky. Sigh. TBDs?
Posted by al369 (Member # 15113) on :
I did the ELISA through Quest 2 years ago and tested negative. I hope I do get lucky.
I went to the appointment fully prepared to pay Igenex prices and was surprised when another lab was chosen, but I didn't say anything because I thought he would know best.
I wish now I had asked. I will email the PA and express my concerns.
Letting myself be swayed by doctors blindly has gotten me to this point, so I should speak up, particularly because these specific medical professionals are patient, communicative, and encourage questions.
Thanks for replying, Lymetoo You're a doll.
Posted by adamm (Member # 11910) on :
IGenex is a good lab for Lyme, Fry's good for bart.
Posted by BOEJR (Member # 1734) on :
hope it helps
Posted by Lymetoo (Member # 743) on :
That's not a Lyme test per se, boejr.
Posted by njlymemom (Member # 15088) on :
hi - sent u a pm
Posted by METALLlC BLUE (Member # 6628) on :
Worthless lab aside from CD57 when it comes to Lyme and tick-borne infections (mostly).
Posted by al369 (Member # 15113) on :
Boejr thanks for the link--I had known about Labcorp being good for cd57 and immune function.
Posted by al369 (Member # 15113) on :
Thanks Metallic Blue. I sent an email to the PA and plan to call tomorrow, if I don't receive a reponse. I think I will insist on Igenex.
Posted by METALLlC BLUE (Member # 6628) on :
I'm pretty sure you can get Igenex whether anyone agrees with your or not. I'm not totally sure on that though. Most doctors -- even your primary, would probably sign off since you're paying for the test out of pocket anyway. (Most likely)
Posted by daise (Member # 13622) on :
Hi AL369,
You are correct. LabCorp Lab in Dallas is used for CD 57 count testing, and yes, it's a good test: it's a SCREENER for diagnosis. In my opinion, it is underused. It could very well SAVE you from getting treatment denied by your insurance company.
Some doctors use it later on to test progress when it may or may not be appropriate to do that.
daise Posted by pingpong (Member # 13706) on :
my experience:
lyme westernblot antibody test: two blood draws done 24hr. apart, one for labcorp, and one for igenex. results: labcorp = totally negative, not even band 41 appeared. Meciaid may have also had influence on interpretation.
iggenex = floridy postive, and met cdc standards for survellance even though fda sent a memo to all docs in u.s.a.not to dianose lyme disease strictly according to cdc antibody pattern.
Posted by Geneal (Member # 10375) on :
My neighbor got lucky and had a CDC positive IgM and IgG from LabCorp.
Who knows?
Hugs,
Geneal
Posted by jamescase20 (Member # 14124) on :
NO THEY SUCK
Posted by Blackstone (Member # 9453) on :
As far as I know...
For Lyme - Not so good. Go IgeneX. For Babesia - Not so good. Try IgeneX instead. I think they have both WA-1 and "duncanii" variant tests For Bartonella: Good as you're going to get with a IgG/IgM or PCR. I know they test for B. henselae and quintana. Maybe B. elizabetha as welll.
I suggest Fry Labs for Bartonella and Babesia. Your doctor actually gets a photograph and you can see bacteria adhered to erythrocytes (red blood cells).
Mycoplasma - Not sure? Chlamydia Pneumoniae - Not sure?
Toxoplasma Gondii - Labcorps is likely fine here.
Genetic Testing - (HLA-DR4? and others?) Not sure.
Labcorps has been absorbing some other smaller, specialty labs. This is a GOOD thing because they do take insurance! They're also good for all routine blood work including CD57, Coagulation studies and so forth.
Posted by DakotasMom01 (Member # 14141) on :
I had mine done at labcorp, in NJ, 2 yrs ago and got back a CDC positive on 7 bands.
I think, it depends on how the techs read the tests or how quickly they are processed. Maybe they were done too early, the first time?
Just because someone had a neg through labcorp in Calif or Ohio, dosen't mean all labcorps are wrong. All labs can make mistakes.
Posted by mushroomman06 (Member # 13088) on :
Had my blood work done at LabCorp. Came back CDC positive, had a positive on 10 bands, a 11.52 on C6 Peptide B. Burdorferi along with other indicaters highlighted. I believe it has to do with how the lab follows up on your blood work.
It was interresting as the lady that took my blood said, another set of test for LYME! After being educated by this site, I now see where the places to get blood work done is so important and so many mis-leading results.
Posted by METALLlC BLUE (Member # 6628) on :
See the problem is, even if you test positive through Labcorp. The test means "nothing" to anyone except an LLMD after you've been treated for 4-6 weeks of antibiotics appropriate for Lyme Disease. So if you're still sick with the same exact symptoms of Lyme Disease that you were sick with when you began treatment, you're screwed.
So if you've got a positive test, and you've got a history of being treated appropriately (By CDC/IDSA/AAN), then your positive test means nothing. It means you now have another disease, not an infection. You may have Lupus, or Post Lyme Syndrome, or perhaps MS, or Psychiatric problems. -- you're back to square one just like the rest of us.
Once you test positive, even if you were bitten again, if you saw no tick, and developed no rash -- the doctor will not be able to use "testing" because they'll claim your tests stay positive, thus you're up ****s creek unless you have some physical obvious manifestation and convince the doctor to treat you. Even if he/she does -- you're already in a chronic state, so another 4 weeks isn't going to help.
Now, even if you test positive for Lyme, and they treat you, you might have co-infections. Do they run co-infection testing when you see a rash, a tick, and a positive Lyme Disease test?
Uh oh. And if they tested you, would all the co-infections show up? Uh oh....
Let's not forget patients who test negative -- say they have zero bands, or only a couple/few. The doctor refuses to treat them claiming it's a negative test.
So the patient gets sicker and sicker and sicker. Eventually -- if fortunate....I guess -- and that patient finds someone to treat them with antibiotics, that patients test could be redone at Labcorp or Quest and suddenly turn positive as a result of killing the bacterium, and thus exposing the immune system to it, which thus causes the immune system to produce antibodies to the particular antigen it sees.
So now you have a patient who tested negative, then tested positive. Same exact test, same exact lab, same exact process of shipping, even the same exact person.
Everything can be the same, but now the immune system recognizes the infection.
This isn't even debatable, there are "hundreds" of studies done on Pubmed.gov on the Blot and ELISSA on this issue.
To make matters even worse, some doctors will claim a "false positive" even if you don't overtly have Bells Palsy, a rash, saw the tick, swollen knee, etc. You've got the symptoms, but have none of the "classic" symptoms. The doctor will say "False positive, sorry." If you're lucky he'll/she'll run the test again, or at least give you 2 weeks of antibiotics "just in case." -- which is what some doctors say.
I've heard "False Positive" a number of times from my own doctors. They've also claimed the "test isn't yours, it must be a mistake."
I had 5 Brain SPECT scans done. I used UMASS Memorial in Worcester Massachusetts, and UCONN in Farmington Connecticut. Both medical schools, with quality SPECT machines in the nuclear medicine department.
Both facilities ran testing. UCONN ran two, UMASS ran three. All 5 showed abnormal hypoperfusion. UMASS was more sensitive, finding significant hypoperfusion through 70% of the cerebral cortex, the frontal lobes, pre, frontal, Temporal, and parietal. More was present on one particular side.
The doctor at the hospital -- I bring all my records -- read the report during one of my hospitalizations. He was trying to tell me I was fine. I showed him my test results, my scans, etc. He said and I quote "There is no way these tests were done correctly. These tests show you have the mind of an 80 + year old man with significant dementia, and you're sitting here talking to me, and sound fine. The test was done incorrectly or these were accidentally mixed up with another patients."
I **** you not, that is what the guy said to me.
Posted by al369 (Member # 15113) on :
Metallic Blue,
I don't even know what to say to your post, except to say: Our health care system can be bulls*** It can also be great, miraculous even, but at times it is a DISMAL FAILURE.
I am SO ANGRY at all this dross. Sigh
Thanks for taking the time to response and share your experience and in so doing information. I appreciate it.
Posted by METALLlC BLUE (Member # 6628) on :
This is where the small glimmer of hope comes in. Educating yourself on tick-borne diseases, and then educating your doctors.
Lyme Disease Specialists or LLMD's will still accept your positive test, regardless of where it's from usually (Specialty lab, or Quest, Labcorp, Bowen, Fry, MDL, etc).
LLMD's are the glimmer of hope, and your ability to educate your other physicians, is the best that you can do.
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