Aa
igenex lab results your thoughts
Just got results back from igenex. I had the initial lyme panel and complete coinfection panel done. These are my results
igenex=negative igenex=ind
cdc=negative cdc= negative
igm igg
18 + 18 +
30 + 28 +
39 ind 31 +
41 ++ 34 ind
58 ++ 39 ind
83-93 ind 41+++
58 +
the ones not listed are - I have since ordered the epitope test on the igg result. All other tests showed negative to co infections etc. My question is should i be seeking another dr. This one is suppose to be a lyme literate natropath and is the closet one to me 1000km away she figures its not lyme most likely another virus causing the + on band 41. Im at my witts end never have i been in this state of health and im 37 years old but these last 2 have made me feel like im 80... To me its soooo close to all being positive i dont understand how they can rule it out that easy with results like this. I was expecting at least a trial of abx. This is up in canada where it seems not many believe in lyme. Your thoughts?
igenex=negative igenex=ind
cdc=negative cdc= negative
igm igg
18 + 18 +
30 + 28 +
39 ind 31 +
41 ++ 34 ind
58 ++ 39 ind
83-93 ind 41+++
58 +
the ones not listed are - I have since ordered the epitope test on the igg result. All other tests showed negative to co infections etc. My question is should i be seeking another dr. This one is suppose to be a lyme literate natropath and is the closet one to me 1000km away she figures its not lyme most likely another virus causing the + on band 41. Im at my witts end never have i been in this state of health and im 37 years old but these last 2 have made me feel like im 80... To me its soooo close to all being positive i dont understand how they can rule it out that easy with results like this. I was expecting at least a trial of abx. This is up in canada where it seems not many believe in lyme. Your thoughts?
Good for you!!! ... and I like your doc already. :)
Depending on if you have co-infections (other bacteria the 'Lyme' bacteria drag along with them), it can take longer. My treatment from start to finish (diagnosis to end of treatment) was maybe 9 to 12 months? Hard to remember, but it's not a quicky, because bacteria are easiest to kill when reproducing (their cell wall is open, and antibiotics can get inside the cell wall to kill the protected bits of the bacteria).
... and on top of that, Lyme has a verrrry slow reproductive cycle.
I don't think there IS an average treatment time, because much relies on our own immune systems and how strong and efficient they are, and also the more co-infections you have along with Lyme, the more cycles of different meds are needed to kill each of the bacterial groups.
I would think a year is common, and sometimes longer, depending on what infections you have and how strong your immune system is.
But it gets easier as time goes on, and you get stronger in small steps.
Take care of yourself, eat well, sleep well, take meds as directed, stay in touch with the doc, and carry on! It took me about a year and a half or so for treatment, and it was worth it. Afterward, I felt better gradually over time, and in about another year, I was about my old pre-Lyme self ... but everyone is different.
Hang on, and keep us posted!
Depending on if you have co-infections (other bacteria the 'Lyme' bacteria drag along with them), it can take longer. My treatment from start to finish (diagnosis to end of treatment) was maybe 9 to 12 months? Hard to remember, but it's not a quicky, because bacteria are easiest to kill when reproducing (their cell wall is open, and antibiotics can get inside the cell wall to kill the protected bits of the bacteria).
... and on top of that, Lyme has a verrrry slow reproductive cycle.
I don't think there IS an average treatment time, because much relies on our own immune systems and how strong and efficient they are, and also the more co-infections you have along with Lyme, the more cycles of different meds are needed to kill each of the bacterial groups.
I would think a year is common, and sometimes longer, depending on what infections you have and how strong your immune system is.
But it gets easier as time goes on, and you get stronger in small steps.
Take care of yourself, eat well, sleep well, take meds as directed, stay in touch with the doc, and carry on! It took me about a year and a half or so for treatment, and it was worth it. Afterward, I felt better gradually over time, and in about another year, I was about my old pre-Lyme self ... but everyone is different.
Hang on, and keep us posted!
Just thought id update this thread. Just got back yesterday from seeing a lyme doc. He says its lyme even if the confirmation test was negative he would consider treatment from the symptoms/western blot. So tonight i started antibiotics (amoxicillin and azithromycin) didnt realize how much was needed to fight this it looks like im a druggy looking at my pill stash. Just curious how long to see better days? (i know this will vary big time but on average)
Just got the epitope results back. It shows positive I've talked to a few ppl and am making an apt with a lyme literate dr. Hopefully this one will be a better choice.
I hear you. The quality of Lyme docs is all over the place, just as with docs in any area of medicine ... but it can be even worse because Lyme is such a new field.
Always keep copies of ALL your test results, and keep them in a binder and carry it with you to a new doc and let the doc know s/he can copy it, but you need to keep the binder at home. It's not uncommon to switch Lyme docs as treatment progresses, because Lyme is a confusing field for many docs, and on top of that, there is a bunch of research going on, so all parts are in motion for now.
Keep an eye out for a doc you want to be your main Lyme doc -- that continuity can be very helpful, but the doc needs to be knowledgeable and wise and also able to communicate well with you, just as you note above.
I would do what you are doing: keep pressing ahead till you find a doc that is a good fit for how you want your doc to relate to you. I went through 20 MDs just to get a Lyme diagnosis, but it sounds like you are already making good progress toward finding a doc you want to work with. Maybe you haven't found #1 Doc yet, but keep looking till you are comfortable.
Be sure to get hard copy (that is, printed out) of all test results, and not just the summary page: ask for and be sure you get full copies of all tests for you and anyone else in your family.
Have you contacted CanLyme for a referral doctor close to you, and also to patient-oriented groups in person or online so you can get leads to docs that you are comfortable with? Lyme treatment doesn't happen overnight, so find a doc you are comfortable with, and who's not too far to travel to maybe once a month during treatment.
... And ALWAYS get full (not summary) copies of ALL tests done on you.
So I am with you: finding the right doc is critical. It took me 20 docs to get a good Lyme doc and diagnosis, so you're way ahead of where I was. You can always switch docs later if need be.
Did you check the CanLyme website? It might have some quite helpful information. I have looked at the site off and on for a number of years, and it seems pretty solid. The doc you saw who gave you 5 minutes of time may not be a good fit ... so while you are waiting for the next appointment with Dr FiveMinutes, be looking for a better fit for you in distance and how the doc operates. Lyme treatment can take a year or so, depending on a lot of variables, like how many different infections the 'Lyme' ticks brought you, so plan for the long haul.
I just searched for -- lyme canada -- and got some good leads. Give it a look. About there being a wait to see the doc: once established with a doc, appointments for me were about once a month, so you can plan ahead.
You might want to wait for your doc to order the tests rather than order them yourself (epitope test you mentioned). That's the doc's job. You say, "The whole point of the [epitope] test was to be able to say yes i got lyme or cross it off my list....." Lyme is often a complex infection, because about half the time, a person with Lyme disease also carries one or more other separate infections that need additional testing and different antibiotics or other treatment from the meds that are effective on ailments other than Lyme itself.
Lyme and its co-infections are *not* a do-it-yourself diagnosis or treatment, imo and understanding, and the best thing to be done is find a solid doc to work with, not in spite of.
Always keep copies of ALL your test results, and keep them in a binder and carry it with you to a new doc and let the doc know s/he can copy it, but you need to keep the binder at home. It's not uncommon to switch Lyme docs as treatment progresses, because Lyme is a confusing field for many docs, and on top of that, there is a bunch of research going on, so all parts are in motion for now.
Keep an eye out for a doc you want to be your main Lyme doc -- that continuity can be very helpful, but the doc needs to be knowledgeable and wise and also able to communicate well with you, just as you note above.
I would do what you are doing: keep pressing ahead till you find a doc that is a good fit for how you want your doc to relate to you. I went through 20 MDs just to get a Lyme diagnosis, but it sounds like you are already making good progress toward finding a doc you want to work with. Maybe you haven't found #1 Doc yet, but keep looking till you are comfortable.
Be sure to get hard copy (that is, printed out) of all test results, and not just the summary page: ask for and be sure you get full copies of all tests for you and anyone else in your family.
Have you contacted CanLyme for a referral doctor close to you, and also to patient-oriented groups in person or online so you can get leads to docs that you are comfortable with? Lyme treatment doesn't happen overnight, so find a doc you are comfortable with, and who's not too far to travel to maybe once a month during treatment.
... And ALWAYS get full (not summary) copies of ALL tests done on you.
So I am with you: finding the right doc is critical. It took me 20 docs to get a good Lyme doc and diagnosis, so you're way ahead of where I was. You can always switch docs later if need be.
Did you check the CanLyme website? It might have some quite helpful information. I have looked at the site off and on for a number of years, and it seems pretty solid. The doc you saw who gave you 5 minutes of time may not be a good fit ... so while you are waiting for the next appointment with Dr FiveMinutes, be looking for a better fit for you in distance and how the doc operates. Lyme treatment can take a year or so, depending on a lot of variables, like how many different infections the 'Lyme' ticks brought you, so plan for the long haul.
I just searched for -- lyme canada -- and got some good leads. Give it a look. About there being a wait to see the doc: once established with a doc, appointments for me were about once a month, so you can plan ahead.
You might want to wait for your doc to order the tests rather than order them yourself (epitope test you mentioned). That's the doc's job. You say, "The whole point of the [epitope] test was to be able to say yes i got lyme or cross it off my list....." Lyme is often a complex infection, because about half the time, a person with Lyme disease also carries one or more other separate infections that need additional testing and different antibiotics or other treatment from the meds that are effective on ailments other than Lyme itself.
Lyme and its co-infections are *not* a do-it-yourself diagnosis or treatment, imo and understanding, and the best thing to be done is find a solid doc to work with, not in spite of.
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-- You say: “Im at my witts end never have i been in this state of health and im 37 years old but these last 2 have made me feel like im 80...” I hear you. I felt about that lousy too.
The best way I could describe how I felt back then: ‘like I’ve got a hangover AND the flu, 24/7.’ And mind you, I stopped drinking years before I got Lyme, just because I didn’t like the hangovers.
-- You say: “To me its soooo close to all being positive i dont understand how they can rule it out that easy with results like this.”
I agree. I would get full (not just “summary”) copies of ALL the tests done so far and taken them to another MD, preferably one who is a member of ILADS (if there are members in Canada near you) and also look online for CanLyme, which has information on dealing with Lyme and finding a Lyme specialist in Canada.
If your current doc says s/he is an expert in Lyme and other tickborne infections, I would still quietly go get a second opinion, even if you have to pay for it out of pocket. There is much confusion in the medical world about Lyme, because it is a very recent infection spreading very quickly, outpacing the medical community’s ability to keep up.
Be aggressive about getting proper diagnosis and treatment. I did, and I am 100% fine today, some years after I was diagnosed and treated.
-- You say: “I was expecting at least a trial of abx.” I’m NOT medically trained, but I personally would see another doc first (a Lyme specialist), because in my reading here and elsewhere, it is common for a non-Lyme-specialist doc to prescribe a short course (perhaps a few weeks) of doxycycline [aka ‘doxy’] antibiotic [usually in capsule form].
That doxy treatment for Lyme is the golden-oldie approach, which does work, BUT only in a very, very recent Lyme infection -- and many of us do not know when we were first bitten. Because docs who are not truly Lyme specialists believe that any and all cases of Lyme can be cured with a couple weeks of doxy (and never mind any treatment for other infections the Lyme ticks may carry about half the time, or how long you have been ill), I personally would find a Lyme specialist for assessment, testing, diagnosis and treatment.
------------------------------------------------------------------------
Lyme will not go away by itself, and Lyme can potentially affect an unborn baby if the mother has Lyme. I have also read that Lyme can be transmitted sexually. Meaning: Lyme is serious and needs to be dealt with by an MD expert in Lyme and its co-infections.
The scientific name for Lyme disease is Borrelia burgdorferi, which makes it closely related to syphilis. Syphilis is also a serious disease, and both need to be diagnosed and treated as soon as possible. They will not just go away.
About finding a Lyme doc, there is an organization in Canada called ‘CanLyme’ -- they have a website and information about how to find a Lyme specialist.
Because of the chaos in the medical community, some docs do not want to be labelled as taking an aggressive approach to diagnosing and treating Lyme, so don't be surprised that you don't find a lot of people (and docs) coming out to announce that they treat Lyme aggressively. In some places in the US, the state/local medical boards can be harsh on MDs who treat Lyme aggressively (meaning with more than a couple of weeks of [the largely ineffective] doxycycline), and it may be the same way in Canada, esp. since I think Canada has government-managed health care, which tends to limit diagnosis and treatment options overall.
Take care, and let us know how we can help. I beat Lyme, and so can you! Yeah!!
--end--
Greetings -- and a few additional thoughts for you:
IgM ("immunoglobulin M") is the first step that the human immune system takes to fight an infection of Lyme. First, the body sends out IgM, then as that effort tapers off, the body sends IgG ("immunoglobulin G"). It's like two waves of soldiers going into battle: IgG is the first wave, and IgM is the second wave to mop up what's left.
Unlike most bacteria, however, Lyme bacteria can persist longer than the immune system is accustomed to, so when your immune system packs up and goes home and assumes that its work is over (as it would normally be with any other bacterial infection), it may well not really be over, because the Lyme infection can and often does persist.
Docs who are not familiar with this aspect of Lyme believe that a short course of antibiotics is enough to kill *all* the Lyme bacteria, and that the old Western blot and ELISA tests are always good enough -- but unfortunately Lyme doesn't play by those rules.
Negative CDC test results (meaning ‘you don’t have Lyme’) are not uncommon in people who truly have Lyme, which is why Lyme-specialist docs often prefer the IGeneX tests, often in addition to the CDC tests. More data is always good to have, as long as the doc *understands* the data and knows that the CDC tests are not the last word.
If the CDC and IGeneX tests are both positive, that's double confirmation of infection; but if *only* the IGeneX tests are positive, that is *still* a valid positive, because the CDC tests are not terribly accurate for the reasons stated above, though some docs insist the CDC tests alone are enough.
(My own Lyme doc was surprised that my CDC tests came back positive, since I had been ill for quite a while, and the immune system usually stops making antibodies fairly soon after infection -- not because the infection is gone, but because the human immune system is accustomed to bacteria with short lives. Therefore the CDC tests are useful, but only if the doc understands that the CDC tests may be a false negative, meaning: “the test is negative, but you still have Lyme”.)
===============================
I’m not medically trained, but here is my take (speaking as a now totally healthy and Lyme-free former patient) of the test results you posted above:
Igenex test: negative result Igenex=ind (meaning indeterminate, meaning “maybe yes, maybe no”)
cdc=negative cdc= negative
igm (the antibody your body makes soon after an infection)
igg (the antibody your body makes sometime *after* an infection)
IgM: IgG:
18 + 18 +
30 + 28 +
39 ind 31 +
41 ++ 34 ind
58 ++ 39 ind
83-93 ind 41+++
58 +
You say, “All other tests showed negative to co infections etc.” That’s good. Be sure to get full copies (not summaries) of ALL tests done until you are completely well. Lyme is tricky, and what one doc doesn’t focus on, another doc may. Lyme is a messy part of medicine, and the docs are in disarray in diagnosis and treatment.
================================================
You say: “My question is should i be seeking another dr. This one is suppose to be a lyme literate natropath and is the closet one to me 1000km away she figures its not lyme most likely another virus causing the + on band 41.”
My comments: What does the naturopath say about the positive results on the other bands? These bands are not irrelevant. About Band 41, what I read also indicates that a positive Band 41 could mean you have Lyme, or something else could be causing the positive result.
That however does NOT rule out the possibility that the positive Band 41 *is* indicating Lyme … especially since there are quite a few other positive indicators that you may have Lyme infection.
There are likely many more Lyme docs near you than it seems. At the end of this post is a mention of CanLyme, a Canada-based organization for physicians etc. who practice in the field of Lyme.
There is a huge split in the medical community (here and there) about how serious Lyme and its companion infections are, how widespread they are, how to test for them, how to interpret the tests, and how to treat if you do have any of them.
=====================================
continued in next pane below
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IgM ("immunoglobulin M") is the first step that the human immune system takes to fight an infection of Lyme. First, the body sends out IgM, then as that effort tapers off, the body sends IgG ("immunoglobulin G"). It's like two waves of soldiers going into battle: IgG is the first wave, and IgM is the second wave to mop up what's left.
Unlike most bacteria, however, Lyme bacteria can persist longer than the immune system is accustomed to, so when your immune system packs up and goes home and assumes that its work is over (as it would normally be with any other bacterial infection), it may well not really be over, because the Lyme infection can and often does persist.
Docs who are not familiar with this aspect of Lyme believe that a short course of antibiotics is enough to kill *all* the Lyme bacteria, and that the old Western blot and ELISA tests are always good enough -- but unfortunately Lyme doesn't play by those rules.
Negative CDC test results (meaning ‘you don’t have Lyme’) are not uncommon in people who truly have Lyme, which is why Lyme-specialist docs often prefer the IGeneX tests, often in addition to the CDC tests. More data is always good to have, as long as the doc *understands* the data and knows that the CDC tests are not the last word.
If the CDC and IGeneX tests are both positive, that's double confirmation of infection; but if *only* the IGeneX tests are positive, that is *still* a valid positive, because the CDC tests are not terribly accurate for the reasons stated above, though some docs insist the CDC tests alone are enough.
(My own Lyme doc was surprised that my CDC tests came back positive, since I had been ill for quite a while, and the immune system usually stops making antibodies fairly soon after infection -- not because the infection is gone, but because the human immune system is accustomed to bacteria with short lives. Therefore the CDC tests are useful, but only if the doc understands that the CDC tests may be a false negative, meaning: “the test is negative, but you still have Lyme”.)
===============================
I’m not medically trained, but here is my take (speaking as a now totally healthy and Lyme-free former patient) of the test results you posted above:
Igenex test: negative result Igenex=ind (meaning indeterminate, meaning “maybe yes, maybe no”)
cdc=negative cdc= negative
igm (the antibody your body makes soon after an infection)
igg (the antibody your body makes sometime *after* an infection)
IgM: IgG:
18 + 18 +
30 + 28 +
39 ind 31 +
41 ++ 34 ind
58 ++ 39 ind
83-93 ind 41+++
58 +
You say, “All other tests showed negative to co infections etc.” That’s good. Be sure to get full copies (not summaries) of ALL tests done until you are completely well. Lyme is tricky, and what one doc doesn’t focus on, another doc may. Lyme is a messy part of medicine, and the docs are in disarray in diagnosis and treatment.
================================================
You say: “My question is should i be seeking another dr. This one is suppose to be a lyme literate natropath and is the closet one to me 1000km away she figures its not lyme most likely another virus causing the + on band 41.”
My comments: What does the naturopath say about the positive results on the other bands? These bands are not irrelevant. About Band 41, what I read also indicates that a positive Band 41 could mean you have Lyme, or something else could be causing the positive result.
That however does NOT rule out the possibility that the positive Band 41 *is* indicating Lyme … especially since there are quite a few other positive indicators that you may have Lyme infection.
There are likely many more Lyme docs near you than it seems. At the end of this post is a mention of CanLyme, a Canada-based organization for physicians etc. who practice in the field of Lyme.
There is a huge split in the medical community (here and there) about how serious Lyme and its companion infections are, how widespread they are, how to test for them, how to interpret the tests, and how to treat if you do have any of them.
=====================================
continued in next pane below
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1 Comments
"My comments: What does the naturopath say about the positive results on the other bands? These bands are not irrelevant. About Band 41, what I read also indicates that a positive Band 41 could mean you have Lyme, or something else could be causing the positive result."
The thing that worries me and i kinda knew better but as my health has been crappy for a couple years now i have no patience i went ahead anyway with this. The lyme litterate naturopath is on mat leave and i didnt find this out till 1 month- month and a half into the wait for my apt. at that point i thought about finding another but didnt want to wait and they assured me the one that was literate in lyme would be overlooking my case. My worries are i got 5 mins or her time or maybe less or who knows what.... I couldnt get a copy of my results till after they it was discussed with me and since i am so far away it was a tele conference. From the phone conservation it sounded like i was only positive on band 41 and that it could be a virus making it a positive there was no mention of the other bands other then it was a controversial test result. I have a million questions now and have another apt. booked but its a month away. I have also ordered the epitope test. Just not sure if im wasting my time with how this has gone so far with this dr. but by no means do i know alot about lyme just i want answers on whats crippling me. The whole point of the test was to be able to say yes i got lyme or cross it off my list....
The thing that worries me and i kinda knew better but as my health has been crappy for a couple years now i have no patience i went ahead anyway with this. The lyme litterate naturopath is on mat leave and i didnt find this out till 1 month- month and a half into the wait for my apt. at that point i thought about finding another but didnt want to wait and they assured me the one that was literate in lyme would be overlooking my case. My worries are i got 5 mins or her time or maybe less or who knows what.... I couldnt get a copy of my results till after they it was discussed with me and since i am so far away it was a tele conference. From the phone conservation it sounded like i was only positive on band 41 and that it could be a virus making it a positive there was no mention of the other bands other then it was a controversial test result. I have a million questions now and have another apt. booked but its a month away. I have also ordered the epitope test. Just not sure if im wasting my time with how this has gone so far with this dr. but by no means do i know alot about lyme just i want answers on whats crippling me. The whole point of the test was to be able to say yes i got lyme or cross it off my list....
From what I read, bands 28, 31, 34, and 39 are specific for Bb, which is the Lyme bacteria. I would suggest getting a second opinion, and along with the test results the physician really needs to see a list or descriptions of all of your symptoms. A trial of abx probably won't help you because it doesn't look like you have a "young" infection, which would show up as igm results. Only a young infection, by which I mean one that is new and where the bacteria have not had time to burrow in and hide, would be cured by 4-6 weeks of abx. When the bacteria have become entrenched, it takes longer to get to them and kill them.
See if you can find a Lyme dr. who will treat you remotely - or at least give you some guidance.
There are some effective herbal protocols out there that can be undertaken without an MD, but in my opinion it's better to have some medical guidance. Although if it were a choice of treat myself or suffer on, I'd be treating myself. If you want to do some reading, try searching on Cowden protocol. His whole protocol is available free, although of course the herbals cost, I think it would amount to about USD 250 a month and they are available from various on-line sources. My LLMD has me on some of them, after 4 months of prescription abx. I can say from the herxing that both abx and herbals work.....
Good luck!
See if you can find a Lyme dr. who will treat you remotely - or at least give you some guidance.
There are some effective herbal protocols out there that can be undertaken without an MD, but in my opinion it's better to have some medical guidance. Although if it were a choice of treat myself or suffer on, I'd be treating myself. If you want to do some reading, try searching on Cowden protocol. His whole protocol is available free, although of course the herbals cost, I think it would amount to about USD 250 a month and they are available from various on-line sources. My LLMD has me on some of them, after 4 months of prescription abx. I can say from the herxing that both abx and herbals work.....
Good luck!
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