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Should I keep going?! (Possible lyme or co-infection)
Hello all, I am new to this lyme thing but I had been experiencing a bunch of different symptoms over the last 5 months.. Ive ruled out a lot of things including thyroid. I did a lyme test because i read about it and it seemed to fit me.
From what i know there are two test the lyme AB, and the western blot and in most cases the western blot is only performed if the Lyme AB comes back positive
My results came back as followed
My Lyme AB= 1.51 Normal Range is 0.00-0.79
I was also present for Bands 41 and 58 but the rest were not present
My doctor said i was negative but honestly I don't see how my lyme AB can be twice the normal range and also be positive for two bands.
Should i continue to pursue this and maybe even get tested again...what are your thoughts?
From what i know there are two test the lyme AB, and the western blot and in most cases the western blot is only performed if the Lyme AB comes back positive
My results came back as followed
My Lyme AB= 1.51 Normal Range is 0.00-0.79
I was also present for Bands 41 and 58 but the rest were not present
My doctor said i was negative but honestly I don't see how my lyme AB can be twice the normal range and also be positive for two bands.
Should i continue to pursue this and maybe even get tested again...what are your thoughts?
I looked through the list of all your posts to me, but didn't find anything that was sent from you to me. What is in this series of posts where I am typing how is all I could find. -???- If you can find your previous msg to me, you could copy and paste it into a new message to me. Sorry!
There is a good deal of confusion in the medical community when it comes to Lyme disease -- many docs think it's not important and just blow it off; other docs may treat briefly with some medications, but don't seem to understand that Lyme bacteria have a verrrrry long reproductive cycle, and it is when the bacteria are dividing to make new baby bacteria that they are most susceptible to being killed off ... result: it takes a relatively long period of treatment to get rid of the infection over time. /// Also consider that Lyme bacteria have the ability to hide from the human immune system, so it takes a longer period of time to kill them off entirely.
Many MDs believe that they truly understand Lyme disease, but there is not an absolute, agreed opinion in the medical community about how to diagnose and treat Lyme. I had Lyme, but to find an MD who truly understood Lyme and how to treat it, I had to go through some 20 MDs who all believed they understood my then-unnamed ailments. One doc looked me in the eye and said quite seriously, "I know you are ill. I just don't know what it is." This honesty was a breath of fresh air after all the pompous opinions and condescension I got from too many of the 20 docs.
Until the split in the medical community is sorted out and everyone is reading off the same page, the trick is to find an MD who takes a more progressive approach to Lyme and its co-infections (bonus diseases often carried by the Lyme ticks). ILADS (short for the International Lyme and Associated Diseases Society) is a voluntary group for MDs who take a more progressive view of Lyme, and finding an ILADS-member MD is what I did.
These docs can be any kind of specialist (or just a general practitioner) -- what is important is their understanding of Lyme as an infection that needs proper diagnosis and appropriate treatment over a period of time (usually measured in months, not days or weeks).
ILADS has a referral service to help you locate ILADS-member physicians near you. If you search online for ILADS, it will give you information on how to find a doc. Also you can search online for
--- ILADS Physician Referral for Lyme Disease --
or simply
--- ILADS referral email --
and there will be ways to find a Lyme doc near you.
-----------------------------------------------------
Note --->>> We generally do NOT post the names of Lyme docs here, to avoid hassles for the docs: state and local medical boards can try to meddle with the Lyme docs and their ways of practice.
-----------------------------------------------------
You will see the term LLMD: it is patient slang for 'Lyme-literate medical doctor', meaning an MD of any specialty (or none) who understands how to diagnose and treat Lyme. All this sounds very odd, I know, but it's just where the medical world is at the moment. If the first Lyme doc you see doesn't suit you, then go to another -- treatment may take months, not weeks, and this doc is someone you will be seeing for a while, if you do have Lyme. If you do NOT have Lyme, a Lyme doc will be able to tell you that too.
--------------------------------------------------
About your tests:
You say, "My Lyme AB= 1.51 Normal Range is 0.00-0.79". AB (meaning antibodies against Lyme that your immune system has made) is something your doc will discuss with you. Given that Lyme bacteria have the ability to suppress your immune system, I would think it a good sign that your immune system is up and fighting, but a Lyme doc is the one to say.
You say, "I was also present for Bands 41 and 58 but the rest were not present". From what I read, Bands 41 and 58 may or may not be Lyme-related, and that's all the more reason to find a good Lyme doc to assess the situation.
You also say: "My doctor said i was negative but honestly I don't see how my lyme AB can be twice the normal range and also be positive for two bands." The standards the medical profession has been using for quite a while in diagnosing (or ruling out) Lyme disease were created to determine *not* whether an individual has Lyme or not, but whether there is an epidemic of Lyme in a particular area. To ensure that the most conservative standard of 'epidemic, or no epidemic?' is applied in order to avoid unnecessary panic and upheaval among the population, the standards by which epidemics are proclaimed are extremely high, to avoid false alarms. It may be that your doc followed that rule of thumb and also because you didn't have more bands present, you perhaps didn't meet the *epidemic* standard for having Lyme -- but you could still have Lyme nevertheless.
You ask: "Should i continue to pursue this and maybe even get tested again...what are your thoughts?" If you have any concerns, then by all means get tested by a good Lyme specialist. Knowing who a 'good Lyme specialist' may be is the tricky part, as mentioned above, but a little snooping around should get you some good leads. I think the ILADS [dot] org offices based in NYC and on their website may gain you some leads, as mentioned above; also look for local Lyme-focused groups near where you live, and they can likely vet the docs for you before you make an appointment.
fwiw, I would do as you are: follow the leads till you have enough data to decide on a comfortable course of action in seeking medical confirmation of whatever is ailing you. Please let us know how you do, and what you find out -- beating Lyme is a collective effort.
---------------------------------------------------
Please let us know how we can help, and how you do. I am more than 5 years post-Lyme, and I am just fine now. I wish the same for you!
Many MDs believe that they truly understand Lyme disease, but there is not an absolute, agreed opinion in the medical community about how to diagnose and treat Lyme. I had Lyme, but to find an MD who truly understood Lyme and how to treat it, I had to go through some 20 MDs who all believed they understood my then-unnamed ailments. One doc looked me in the eye and said quite seriously, "I know you are ill. I just don't know what it is." This honesty was a breath of fresh air after all the pompous opinions and condescension I got from too many of the 20 docs.
Until the split in the medical community is sorted out and everyone is reading off the same page, the trick is to find an MD who takes a more progressive approach to Lyme and its co-infections (bonus diseases often carried by the Lyme ticks). ILADS (short for the International Lyme and Associated Diseases Society) is a voluntary group for MDs who take a more progressive view of Lyme, and finding an ILADS-member MD is what I did.
These docs can be any kind of specialist (or just a general practitioner) -- what is important is their understanding of Lyme as an infection that needs proper diagnosis and appropriate treatment over a period of time (usually measured in months, not days or weeks).
ILADS has a referral service to help you locate ILADS-member physicians near you. If you search online for ILADS, it will give you information on how to find a doc. Also you can search online for
--- ILADS Physician Referral for Lyme Disease --
or simply
--- ILADS referral email --
and there will be ways to find a Lyme doc near you.
-----------------------------------------------------
Note --->>> We generally do NOT post the names of Lyme docs here, to avoid hassles for the docs: state and local medical boards can try to meddle with the Lyme docs and their ways of practice.
-----------------------------------------------------
You will see the term LLMD: it is patient slang for 'Lyme-literate medical doctor', meaning an MD of any specialty (or none) who understands how to diagnose and treat Lyme. All this sounds very odd, I know, but it's just where the medical world is at the moment. If the first Lyme doc you see doesn't suit you, then go to another -- treatment may take months, not weeks, and this doc is someone you will be seeing for a while, if you do have Lyme. If you do NOT have Lyme, a Lyme doc will be able to tell you that too.
--------------------------------------------------
About your tests:
You say, "My Lyme AB= 1.51 Normal Range is 0.00-0.79". AB (meaning antibodies against Lyme that your immune system has made) is something your doc will discuss with you. Given that Lyme bacteria have the ability to suppress your immune system, I would think it a good sign that your immune system is up and fighting, but a Lyme doc is the one to say.
You say, "I was also present for Bands 41 and 58 but the rest were not present". From what I read, Bands 41 and 58 may or may not be Lyme-related, and that's all the more reason to find a good Lyme doc to assess the situation.
You also say: "My doctor said i was negative but honestly I don't see how my lyme AB can be twice the normal range and also be positive for two bands." The standards the medical profession has been using for quite a while in diagnosing (or ruling out) Lyme disease were created to determine *not* whether an individual has Lyme or not, but whether there is an epidemic of Lyme in a particular area. To ensure that the most conservative standard of 'epidemic, or no epidemic?' is applied in order to avoid unnecessary panic and upheaval among the population, the standards by which epidemics are proclaimed are extremely high, to avoid false alarms. It may be that your doc followed that rule of thumb and also because you didn't have more bands present, you perhaps didn't meet the *epidemic* standard for having Lyme -- but you could still have Lyme nevertheless.
You ask: "Should i continue to pursue this and maybe even get tested again...what are your thoughts?" If you have any concerns, then by all means get tested by a good Lyme specialist. Knowing who a 'good Lyme specialist' may be is the tricky part, as mentioned above, but a little snooping around should get you some good leads. I think the ILADS [dot] org offices based in NYC and on their website may gain you some leads, as mentioned above; also look for local Lyme-focused groups near where you live, and they can likely vet the docs for you before you make an appointment.
fwiw, I would do as you are: follow the leads till you have enough data to decide on a comfortable course of action in seeking medical confirmation of whatever is ailing you. Please let us know how you do, and what you find out -- beating Lyme is a collective effort.
---------------------------------------------------
Please let us know how we can help, and how you do. I am more than 5 years post-Lyme, and I am just fine now. I wish the same for you!
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