Aa
Got my IGeneX Results Back...
...and apparently I have more research to do.
I am unfortunately interpreting my results as best I can without doctor help for the moment. The LLMD I went to might very well have been one of the worst doctor experiences I have ever had. The doctor didn't seem to care that much to begin with, was willing to put me on VERY high doses of possibly dangerous antibiotics without ever looking at my prior tests or running new ones, and seemed put off when I wanted to see results first. I am also hypoglycemic and the doctor flat out told me that had nothing at all to do with sugar and I just didn't want to follow the diet I was being given. I tried the new diet. On day 4 I collapsed and almost blacked out at work. Apparently this was me just not bothering to eat. (Being hypoglycemic I knew exactly what it was... a sugar crash. I was eating all the sugar I was allowed and it still wasn't enough to prevent it.) This is only a tiny bit of why I fired this doctor super fast.
So I am back to my local rheumy who I love and adore (now MORE than ever), but have not had the opportunity to go over my results with him just yet.
My IFA came back equivocal.
IgM WB came back IGenex and CDC positive, bands 30, 39, and 41.
IgG WB came back IGeneX and CDC negative, band 41 with an indeterminate on 39.
Going to do more research and talk to my doc, but in the meantime I was curious how this stacked up against other people in this community. I'm really not sure (yet) the difference between IgM and IgG and what one being positive and the other negative means.
I am unfortunately interpreting my results as best I can without doctor help for the moment. The LLMD I went to might very well have been one of the worst doctor experiences I have ever had. The doctor didn't seem to care that much to begin with, was willing to put me on VERY high doses of possibly dangerous antibiotics without ever looking at my prior tests or running new ones, and seemed put off when I wanted to see results first. I am also hypoglycemic and the doctor flat out told me that had nothing at all to do with sugar and I just didn't want to follow the diet I was being given. I tried the new diet. On day 4 I collapsed and almost blacked out at work. Apparently this was me just not bothering to eat. (Being hypoglycemic I knew exactly what it was... a sugar crash. I was eating all the sugar I was allowed and it still wasn't enough to prevent it.) This is only a tiny bit of why I fired this doctor super fast.
So I am back to my local rheumy who I love and adore (now MORE than ever), but have not had the opportunity to go over my results with him just yet.
My IFA came back equivocal.
IgM WB came back IGenex and CDC positive, bands 30, 39, and 41.
IgG WB came back IGeneX and CDC negative, band 41 with an indeterminate on 39.
Going to do more research and talk to my doc, but in the meantime I was curious how this stacked up against other people in this community. I'm really not sure (yet) the difference between IgM and IgG and what one being positive and the other negative means.
That's strange----- this thread just popped up at the top of the list of threads today when the last post was five days ago!
I think there's been some glitches with MH lately.
I think there's been some glitches with MH lately.
It's not that I don't trust or believe in antibiotics, it was the way the LLMD went about it. The doc barely acted as though they were listening, was very condescending (even moreso when I called with questions and needing help), put things in my chart that have NOTHING to do medically and also things that I never ever said or put in any of my documents, and ran several tests that there was NO reason for. A pre-screening for lung cancer when I have no symptoms, am not around smoke, and haven't ever touched tobacco once? I was flat out told "Well obviously you don't feel sick" when I asked if I could wait a few weeks and see the results before trying potentially dangerous drugs, especially since we WEREN'T sure Lyme was the issue, and when I explained a newly-onset symptom (that has since become one of my worst) I was told "Yeah, well, you probably just did something wrong" and ignored. It is not just the antibiotics issue I had with this LLMD. It is a very, very long list of things. I nearly ended up in a fight on the phone just to get my records.
Another LLMD is not an option for me right now. The closest one is going to be at least 8-10 hours away at this point. When I say I like my rheumy, I do mean that, but I like him also because he listens and is very willing to try things and research things that I come to him with, even if he doesn't specialize in it. Thus the reason I feel confident in at least giving him a chance and getting his opinions. He is very open to things he doesn't know or things that might be different than what he knows.
I have found this community very helpful in giving me ideas of what I should be researching and asking and I just want to thank everyone. That's one reason I came here after getting my test results back. I know you guys can't give me the answers, but you can give me a bit of insight in reference to your own personal experiences and that helps a lot!!
Another LLMD is not an option for me right now. The closest one is going to be at least 8-10 hours away at this point. When I say I like my rheumy, I do mean that, but I like him also because he listens and is very willing to try things and research things that I come to him with, even if he doesn't specialize in it. Thus the reason I feel confident in at least giving him a chance and getting his opinions. He is very open to things he doesn't know or things that might be different than what he knows.
I have found this community very helpful in giving me ideas of what I should be researching and asking and I just want to thank everyone. That's one reason I came here after getting my test results back. I know you guys can't give me the answers, but you can give me a bit of insight in reference to your own personal experiences and that helps a lot!!
Some bands laid out on the western blot are said to have meaning behind them. That is why you see the ** next to certain bands, those are highly Lyme specific bands.
" I'm really not sure (yet) the difference between IgM and IgG and what one being positive and the other negative means."
USUALLY a positive IgM means a recent infection.
USUALLY a positive IgG means an old infection.
But Lyme disease and it's tests break all the rules and many people have fluctuating results, back and forth through-out many tests over many months or years.
My suggestion is to not worry so much about the IgM/IgG thing and concentrate on your tests results---- which show you're positive for Lyme.
Lyme disease IS treated by what is considered high dose antibiotics. Treating it with a small dose, as an Infectious Disease doctor might suggest (that includes Rhuematologists) can result in an under-treated disease. A person might feel better after a short, low dose but the chances are that Lyme will re-emerge later and be harder to treat.
Going to a doctor that you 'like' sounds like a good idea. But there are some very 'likable' doctors that don't know enough about Lyme to give the best treatment. Or they're following guidelines that are likely to have adverse consequences down the road.
You said ÿour llmd was " willing to put me on VERY high doses of possibly dangerous antibiotics without ever looking at my prior tests or running new ones"
Some of us ARE put on antibiotics before test results come back (time is of essence when dealing with Lyme---- the sooner the better). Many, including me, are put on antibiotics with negative test results from Igenex because the symptoms and the reasons are so indicative of Lyme that antibiotics are less a danger than waiting to take them.
You feel that high doses of antibiotics can possibly be dangerous. That has some truth to it. But not nearly as dangerous as Lyme can be left untreated or under-treated.
It's up to you to make the decision though. I'm just giving you some reasons for treatment from a science point of view.
Have you read the ILADS Guidelines? If not---- see what the 'experts' say about treating Lyme.
USUALLY a positive IgM means a recent infection.
USUALLY a positive IgG means an old infection.
But Lyme disease and it's tests break all the rules and many people have fluctuating results, back and forth through-out many tests over many months or years.
My suggestion is to not worry so much about the IgM/IgG thing and concentrate on your tests results---- which show you're positive for Lyme.
Lyme disease IS treated by what is considered high dose antibiotics. Treating it with a small dose, as an Infectious Disease doctor might suggest (that includes Rhuematologists) can result in an under-treated disease. A person might feel better after a short, low dose but the chances are that Lyme will re-emerge later and be harder to treat.
Going to a doctor that you 'like' sounds like a good idea. But there are some very 'likable' doctors that don't know enough about Lyme to give the best treatment. Or they're following guidelines that are likely to have adverse consequences down the road.
You said ÿour llmd was " willing to put me on VERY high doses of possibly dangerous antibiotics without ever looking at my prior tests or running new ones"
Some of us ARE put on antibiotics before test results come back (time is of essence when dealing with Lyme---- the sooner the better). Many, including me, are put on antibiotics with negative test results from Igenex because the symptoms and the reasons are so indicative of Lyme that antibiotics are less a danger than waiting to take them.
You feel that high doses of antibiotics can possibly be dangerous. That has some truth to it. But not nearly as dangerous as Lyme can be left untreated or under-treated.
It's up to you to make the decision though. I'm just giving you some reasons for treatment from a science point of view.
Have you read the ILADS Guidelines? If not---- see what the 'experts' say about treating Lyme.
Hi, actually the false positives usually not from IgeneX as they have the most sensitive testing. Most Lyme patients are positive for mono, EBV as I was and I was also positive for lupus and MS and many more. Lyme is called the great imitator as it imitates many illnesses.
Most LLMD do believe in high doses of antibiotics but if you don't like your Dr I would try to get one you are more comfortable with. From your test results I would say you have lyme.
Most LLMD do believe in high doses of antibiotics but if you don't like your Dr I would try to get one you are more comfortable with. From your test results I would say you have lyme.
I have also seen a lot of talk on false positives when someone has other diseases, like mono. The decline of my health started with very severe mono in 2008. I've never been the same since. And I am currently being treated for Mixed Connective Tissue Disease. Not sure if mono or MCTD could be cause for a false positive?
I was also CDC positive on the IgM, yet completely negative on the IgG.
Some may think that IgG indicates an older infection and IgM more recent. But I've seen/read/heard otherwise...
In my own personal opinion, I think IgM indicates an active ongoing infection rather than one that is dormant and likely not causing many pronounced symptoms.
I think most people that do test positive on the IGeneX do so on IgM.
Some may think that IgG indicates an older infection and IgM more recent. But I've seen/read/heard otherwise...
In my own personal opinion, I think IgM indicates an active ongoing infection rather than one that is dormant and likely not causing many pronounced symptoms.
I think most people that do test positive on the IGeneX do so on IgM.
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