Just got my Igenex test results back. I have only one band - 31 - showing positive. My doctor feels that I may wish to treat for Lyme, even with only 1 band, given I was bitten again twice last week (after this blood test was done). I have many symptoms - white matter brain lesions, arthritis, liver enzyme issues, thyroid/Crohns issues - so he is leaving it up to me. Is there anyone here treating but only having one band positive? I am confused and nervous. He feels that band 31 confirms that I have had Lyme but he says Igenex says I do not have it because 2 bands are required for them to say I am fully positive.
I am concerned about starting ABs if I don't need to as I am also taking LDN for the Crohns and candida issues are huge with LDN, and right now I am candida-free (or at least my candida is under control). I should also add that this doc would not be doing the treatment himself - he just ordered the test - he would be referring me elsewhere (so not benefiting from treatment costs).
Any thoughts are appreciated.
Posted by t9im (Member # 25489) on :
Band 31 is specific to the Lyme spirochete, indicates exposure.
While Igenex requires 2 bands to consider it positive in the end the diagnosis should be clynical.
If it was me with what I know today, one band confirms the diagnosis.
Posted by philly78 (Member # 31069) on :
I started treatment with only one band positive...band 23 on IGG and IGM...and I didn't even recall a tick bite. I do live in an endemic area.
You recall being bitten and you're having symptoms so I wouldn't go by the blood work. It isn't uncommon to come back negative when you are sick.
I was nervous about starting treatment as well. You don't have to commit to doing it long term and for now can look at it as a trial run to see how you react to the abx.
If it is lyme and you don't treat it, your symptoms may progress and you can get worse. If it were me, I would give the abx a try.
Posted by momintexas (Member # 23391) on :
Band 31 can also show positive on a cross reaction to a few other things. Ex. Mycoplasma, HHV6.
Igenex has another test they can run to confirm Band 31 being Lyme or from something else.
I cannot think of the name of the test but Igenex keeps your blood for 3 months, if you call them they can add this test on for an additional fee.
(Your Dr may have to call to have it added, but you can call Igenex yourself and ask).
They will know what the test is called.
Good luck.
Posted by TF (Member # 14183) on :
Did you get a copy of the test?
You want a copy. And, you want to see if any of the bands were marked "Ind" for "indeterminate."
An indeterminate band is a slightly positive band.
I'll bet you have some.
See this post for an explanation of the Western Blot test, positives, indeterminates, the role of symptoms, etc.
This post is found under "Quick Links to Popular Topics" near the top of the Medical Questions Forum. People need to understand the Western Blot test to realize what it is.
I agree with all the other posters. With lyme, you can't go by the blood test. Try a course of antibiotics and see what happens.
See this quote from the Burrascano Lyme Treatment Guidelines which says the same thing:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints......
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
I suggest you read the entire document. The more you learn about this disease, the better decisions you will be able to make--like the decision you have to make now.
Notice in the quote above that a doctor uses a patient's response to antibiotics to determine whether or not they have lyme disease--do thei have a Herxheimer reaction to meds, do they improve on the meds, etc.
Notice that he says no test can tell you whether you have lyme or not. The lyme tests are just not that reliable.
Posted by CountryMouse (Member # 32073) on :
Thank you everyone! Two years ago I came down with elevated liver enzymes and a very odd rash which none of the 6 docs I saw could diagnose. Since then I have had periods of feeling great with periods of feeling really crappy, and I can see now that this appears to be a classic Lyme symptom. I will read the suggested documents, and will check out the re-test on my blood, which I think would be very good to do. I don't have a copy of my test yet but will get one in 2 weeks or sooner. Seems odd to me that Igenex can't just give you your own copy, especially since we pay out of pocket for it.
Posted by HopesAlive (Member # 29774) on :
I was going to say the same about looking for the "IND" on the test. You certainly sound as if you have many symptoms that could be attributable to Lyme.
Keep us posted!
Posted by TF (Member # 14183) on :
Igenex is just like any other medical lab that does a test on you. The medical profession requires that the lab report the results only to the doctor who ordered the test.
Then, the doctor reviews the results and tells you what it means to you, comes up with necessary treatment, further tests, etc.
You never get your own Quest or LabCorp results whether you have insurance or not--whether you pay for it or your insurance pays, in other words, is irrelevant. The results always go to the doctor who ordered the test.
The medical professional can give you a copy of all tests once he/she has discussed them with you.
Posted by CountryMouse (Member # 32073) on :
TF - actually in MA where I live, I DO get my own copies of any test I want (xrays, bloodwork, etc), I just have to show my ID at the lab and they are required to give/send it to me. I guess it isn't like that everywhere?? Then I guess I am lucky! Unfortunately since the Igenex test lab is in CA I can't get the results myself in this case Posted by sbh93 (Member # 30429) on :
Country Mouse, I am originally from the same area you live in, a highly endemic area. Between that, clinical symptoms not explained by other conditions, and at least one band on a western blot, I would say treat it.
I would love to visit my old pediatrician who dismissed my tick bites and told my mother to cut my hair to get rid of the headaches and stiff neck and give her a piece of my mind.
Posted by ktkdommer (Member # 29020) on :
If I do lab work throught he hospital outpatient lab, our labwork is free from the hospital. I just call and they have a copy ready. Sometimes I get the info before the doctor informs me.
At this certain hospital it is their policy to provide medical documents for free.
At my sister's lab if the doc writes, copy to patient, she gets one.
I agree with the posts above.
Posted by sixgoofykids (Member # 11141) on :
Band 31 is specific in the presence of band 41, otherwise it can be present due to virus. There is a test that will look at whether band 30/31 comes from Lyme or something else. I would get that test if I had band 31 alone positive to be sure you're treating the right thing. Viruses can be nasty, too.
In the end, it's a clinical diagnosis. It's tough that the "expert" is leaving it up to you.
Posted by annier1071 (Member # 28977) on :
I had only band 41+ and 58 ind the first test from igenex. I started treatment for 5 months.
After two months of abx my igenex test came back with 23-25 IND 30+ 34IND 39 IND 41 + and 58++ IGG 31IND 39IND 41+ 58+ IGM
Neg coinfections. THis was still considered neg through igenex, My llmd continued abx for a few more months and then said I was in remission?
I think you need to give abx a try and see how you feel. Dont go full force yet on them. YOu can retest in a couple of months to see if you have more bands.
Posted by CountryMouse (Member # 32073) on :
Well, just got back from vacation and now I have an infected tick bite. I went to my pcp and got a new doc due to her being away...she put me on doxy for a week to see if it goes away. She totally discounted the Igenex test and said Lyme only needs to be treated with doxy for 14 days! Doesn't the CDC say 28 days? When I asked if I should be tested for co-infections, she said if I feel fine there was no reason to test for them. OMG I didn't even bother trying to educate her. Anyway, I have a big hot welt on my thigh at this point, and I am taking pictures of it for documentation.
I guess I just wanted to post an update on my situation, and wanted to ask all of you if anyone ever got just an "infected" tick bite or if I have an infection, do you think I probably have a new reactivated case of Lyme or a co-infection? In other words, is it possible to just get a simple infection of a tick bite or is the chance greater that an infection is indicative of Lyme/co-inf.? Gosh I hope I am explaining myself properly! Thanks to all...
Posted by jeffinca11 (Member # 25584) on :
There are some good labs out there besides Igenex that actually take insurance.
Medical Diagnostic Labs tests for both lyme and co-infections. http://www.mdlab.com
They also show the entire Western Blot strip. Call and ask them to ship you a patient test kit for tick born diseases.
Stony Brook University has a famous Lyme testing Lab. They will ship the test kit to your doctor only.
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