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Results Neg. What do i do now?
Okay I got my results back from the Mayo Clinic and Both Blots were negative my doctor says. Im still going to do a spinal tap Should I try again or accept its MS with absolutely no proof it is that? This all is just gettin exhausting mentally and physicaly.. I went to my regular doc about my swollen knees and bad joint pain (knees elbows fingers) ive had ever since this started happening and now constant ear rining 24/7 and his answer was stress? I wanted to flip out! I'm sorry i been through more stressful things then this in my life and my joints werent killing me and knees werent swelling up and bones creaking sorry doc that was just a lame excuse of ya dont really care! I dont know what to do anymore i just wish someone would listen to me and not think im nuts! I told my reg. doc to look up my results since its through the same hospital branch and i mentioned it was a lyme test and ya he pretty much blew me off and was yeah ok uh huh and walked away he really didnt want to hear it. So do i give up? I dont know what else to do. I dont have the pocket money for a LLMD and i know thats what i need so any suggestions would be highly appreciated!
Yep, just get a doc to sign off on an Igenex lab. It's the only way I got clear answers after a positive ELISA and a few "negative" Western Blots. When Igenex came back, i was CDC positive for IgM. Huh! What do you know, and the others were simply "negative". A little fishy. It's a shame.
Good news is, I just happened to have a understanding neuro who happily signed off on an Igenex lab.
Good news is, I just happened to have a understanding neuro who happily signed off on an Igenex lab.
Just to be clear here:
1. You say: 'Just to correct part of what Jackie has stated: the CDC doesn't "use" or "not use" any labs...'
You misquote me. I did NOT say that the CDC uses or does not use various labs. I said: 'If you are seeing an MD familiar with Lyme, they may rely only on the basic tests and not use IGeneX labs, which have tests not yet approved by the CDC but that show "bands." '
You are unfortunately in error about the plain language and obvious meaning of what I said. Do you have a comment about what I actually wrote?
2. You say: '[T]here are specific antibodies (not bits, sorry again Jackie! :) ) that are used to determine whether a person is considered "CDC positive" for Lyme disease.'
I find it more understandable and less tiresome in explaining the test process to use non-technical words like 'bits' or 'pieces' than technically accurate words like 'antibodies' which do not convey meaning necessary to comprehension of the subject. Your 'correction' of my use of the word 'bits' does not add anything to the discussion or the explanation.
3. You say: 'Some would say that even a few bands mean infection.'
Well, you might say that, but you would be unclear in the extreme because the bands do not all carry the same level of correlation to Lyme. Some bands are more highly indicative of Lyme; other bands overlap with other conditions, which is why it is preferable to have copies of the test results showing the actual bands detected and at what levels. See the IGeneX website for explanation. Your comment is unfortunately misleading.
4. You say: 'Igenex ... does test for more antibodies than the CDC requires. (Maybe that is what Jackie is thinking of.)'
No, that is not what Jackie is thinking of. The non-Igenex tests I have seen state 'thumbs up/thumbs down' -- either Lyme or no Lyme, without any insight or ability to weigh the results, just as ErinZoe23 says above about the test results that she received.
5. You say: 'It [Igenex] is also a Medicare approved facility, which means it is inspected for accuracy at least once a year and must pass certain criteria to be able to stay certified by the Government.'
Your comment is not particularly relevant to the foregoing discussion.
1. You say: 'Just to correct part of what Jackie has stated: the CDC doesn't "use" or "not use" any labs...'
You misquote me. I did NOT say that the CDC uses or does not use various labs. I said: 'If you are seeing an MD familiar with Lyme, they may rely only on the basic tests and not use IGeneX labs, which have tests not yet approved by the CDC but that show "bands." '
You are unfortunately in error about the plain language and obvious meaning of what I said. Do you have a comment about what I actually wrote?
2. You say: '[T]here are specific antibodies (not bits, sorry again Jackie! :) ) that are used to determine whether a person is considered "CDC positive" for Lyme disease.'
I find it more understandable and less tiresome in explaining the test process to use non-technical words like 'bits' or 'pieces' than technically accurate words like 'antibodies' which do not convey meaning necessary to comprehension of the subject. Your 'correction' of my use of the word 'bits' does not add anything to the discussion or the explanation.
3. You say: 'Some would say that even a few bands mean infection.'
Well, you might say that, but you would be unclear in the extreme because the bands do not all carry the same level of correlation to Lyme. Some bands are more highly indicative of Lyme; other bands overlap with other conditions, which is why it is preferable to have copies of the test results showing the actual bands detected and at what levels. See the IGeneX website for explanation. Your comment is unfortunately misleading.
4. You say: 'Igenex ... does test for more antibodies than the CDC requires. (Maybe that is what Jackie is thinking of.)'
No, that is not what Jackie is thinking of. The non-Igenex tests I have seen state 'thumbs up/thumbs down' -- either Lyme or no Lyme, without any insight or ability to weigh the results, just as ErinZoe23 says above about the test results that she received.
5. You say: 'It [Igenex] is also a Medicare approved facility, which means it is inspected for accuracy at least once a year and must pass certain criteria to be able to stay certified by the Government.'
Your comment is not particularly relevant to the foregoing discussion.
Thank you guys... I'm going to call my one doctor and see if any bands showed on her results ( maybe she gets a different result paper) if not i think i'm just going to do it myself and have a doctor write me a thing to Igenex so i can do the test kit myself.. i think thats the only way im going to lay this to rest is if its done by the best and i see results of bands myself! Thank you all again for the information its very helpful to me Ive been learning alot i must say!
Just to correct part of what Jackie has stated: the CDC doesn't "use" or "not use" any labs; there are specific antibodies (not bits, sorry again Jackie! :) ) that are used to determine whether a person is considered "CDC positive" for Lyme disease. You may show positive for a few antibody bands, but still not meet the criteria for "CDC positive". Some would say that even a few bands mean infection.
Igenex happens to be a lab that specializes in tick borne illnesses, and does test for more antibodies than the CDC requires. (Maybe that is what Jackie is thinking of.) It is also a Medicare approved facility, which means it is inspected for accuracy at least once a year and must pass certain criteria to be able to stay certified by the Government.
Igenex happens to be a lab that specializes in tick borne illnesses, and does test for more antibodies than the CDC requires. (Maybe that is what Jackie is thinking of.) It is also a Medicare approved facility, which means it is inspected for accuracy at least once a year and must pass certain criteria to be able to stay certified by the Government.
Others here may be able to comment, but it may be that the tests you got don't show bands -- the basic tests don't, I believe.
I can't tell from your comments what tests you had done. The tests that have 'bands' have a list of different bits of Lyme and other bacteria, with each of the bits having a number, and next to that number, there are either no marks (meaning not found) or a list of +++ signs (meaning the bit was found, with more +'s meaning more bits). Using that collection of bits and how much of which ones were found, the MD can figure out whether it's likely or not that you have Lyme, based on your symptoms.
If you are seeing an MD familiar with Lyme, they may rely only on the basic tests and not use IGeneX labs, which have tests not yet approved by the CDC but that show 'bands.' In your shoes, I would find myself an MD who tests through IGeneX. Others here can explain the testing stuff better than I can.
I can't tell from your comments what tests you had done. The tests that have 'bands' have a list of different bits of Lyme and other bacteria, with each of the bits having a number, and next to that number, there are either no marks (meaning not found) or a list of +++ signs (meaning the bit was found, with more +'s meaning more bits). Using that collection of bits and how much of which ones were found, the MD can figure out whether it's likely or not that you have Lyme, based on your symptoms.
If you are seeing an MD familiar with Lyme, they may rely only on the basic tests and not use IGeneX labs, which have tests not yet approved by the CDC but that show 'bands.' In your shoes, I would find myself an MD who tests through IGeneX. Others here can explain the testing stuff better than I can.
Hi guys I recieved a couple and it has nothing about bands on them what so ever it actaully looks like the same exact BASIC lyme test i had a month ago like basic basic my infectious disease doc laughed at it cause its so pointless and she ordered me the western blots.....I think the lab ( same lab i went to b4) might of messed it up and didnt know quite what they were doing... All my copy says...
Lyme disease anitbody: neg.
Lyme disease antibody neg: neg
NO DETECTABLE ANTIBODY TO BORRELIA BURGDORFERI
and thats it i got a western blot IgG and IgM is that how the results look on any of yours?
Lyme disease anitbody: neg.
Lyme disease antibody neg: neg
NO DETECTABLE ANTIBODY TO BORRELIA BURGDORFERI
and thats it i got a western blot IgG and IgM is that how the results look on any of yours?
I agree with Amyloo's comments -- first step, copies of the test results, all of them.
You say your dr. says the tests were negative, do you actually have copies yourself? If not, get copies so that you may see if any of the bands show positive.
Also, if it were me I would not do a spinal tap. They aren't necessary for a dx of MS, and they are highly unlikely to show any Lyme DNA. They can cause terrible headaches, for me they are more trouble than they are worth. But I am not a medical professional.
I don't think joint pain and swelling are symptoms of MS, so it sounds like something more is going on.
Also, if it were me I would not do a spinal tap. They aren't necessary for a dx of MS, and they are highly unlikely to show any Lyme DNA. They can cause terrible headaches, for me they are more trouble than they are worth. But I am not a medical professional.
I don't think joint pain and swelling are symptoms of MS, so it sounds like something more is going on.
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