Aa
Igenex test help!?
Does anyone have the link to order the free testing kit? And the info on it?
My doc said she would do the test, but she wants info on it first, and of course I have to order the test kit.
I hope she will do it!! Where is the info for this that I can give to her? She is my only chance for getting the test
My doc said she would do the test, but she wants info on it first, and of course I have to order the test kit.
I hope she will do it!! Where is the info for this that I can give to her? She is my only chance for getting the test
Some options:
-- Ask each of ten friends or family to loan you $20. That covers the test costs.
-- Call your PCP's office and follow up on the status of the doc's review of the test. Persistence is needed.
-- Take the literature (or an online link from ILADS or its website) and ask your doc to read the literature and to authorize the test. The worst s/he will say is no.
-- Keep trying!
-- Ask each of ten friends or family to loan you $20. That covers the test costs.
-- Call your PCP's office and follow up on the status of the doc's review of the test. Persistence is needed.
-- Take the literature (or an online link from ILADS or its website) and ask your doc to read the literature and to authorize the test. The worst s/he will say is no.
-- Keep trying!
I checked lyme tap, but it appears I would still have to pay 200 cash out of pocket and wait for reimbursement. I can't afford it. So It looks like I will never get the test or a doctor. The doctor will take insurance, but not for the test. And I think I still have to pay 20%, which gets really expensive for a poor college student who can't work. I will be lucky to get the money to drive the 600 miles to the appointment.
I sent the info to my PCP but never heard back.
http://www.lymetap.com/
Any other ideas?
Things are better for now the cold weather. I guess this is something I am going to have to live with.
I did figure out something to help the digestive issues. I went on a hormonal pill to try and combat awful cystic acne (had hormones tested and were all normal) and somehow that fixed the digestive problems, why I do not know. I still have the acne though. And it makes the fatigue worse.
I sent the info to my PCP but never heard back.
http://www.lymetap.com/
Any other ideas?
Things are better for now the cold weather. I guess this is something I am going to have to live with.
I did figure out something to help the digestive issues. I went on a hormonal pill to try and combat awful cystic acne (had hormones tested and were all normal) and somehow that fixed the digestive problems, why I do not know. I still have the acne though. And it makes the fatigue worse.
Welcome to MedHelp Lyme -- you're in good company here. Having Lyme is difficult enough, as you already know -- and the other problem is a serious split in the medical community about Lyme: where it occurs, who is likely to have it, how to determine if someone is infected, and how to treat it. (That pretty much covers the waterfront, eh.)
The first important thing to know about Lyme is that there is a tremendous split in the medical community on how serious Lyme is, how to diagnose it, and how to treat it. Lyme was recognized only in the last few decades, and the first docs who described and wrote about it believed that Lyme, a bacterial infection, needs treatment similar to many other bacterial infections: a few weeks of basic antibiotics and you're good to go. This approach works for so many bacterial infections that it seemed a reasonable view.
It turns out, however, that Lyme has aspects that are quite different from the usual bacterial infections we are more accustomed to.
For one thing, Lyme bacteria (formally called Borellia burgdorferi, or B.burgdorferi for short) have the capacity to burrow into areas of the body (such as cartilage) where the human immune system cannot easily reach into to kill the Lyme bacteria.
In addition, those hidden 'Lyme' bacteria often are accompanied by other infections which are not killed by the same antibiotics as Lyme, and if an MD does not understand this, then the bacteria can and do continue to cause illness and misery. 'Lyme' bacteria are in the same scientific category or family as the bacteria that cause syphilis, and without proper diagnosis and treatment, Lyme can do similar damage to its target: permanent damage to the brain and the body. Syphilis was close to being wiped out fifty years ago and is still treatable today, and Lyme is also treatable -- but first the doc has to test properly for Lyme and then know what medications to give and for how long. Most docs do not understand this...
... and that is why seeing a Lyme specialist is so important: (1) to diagnose and treat Lyme properly and fully (or to rule it out), and (2) to diagnose and treat properly and fully other infections that often need different medication from what kills Lyme, such as these other illnesses, often referred to as a group as 'co-infections': babesia, bartonella, ehrlichia, mycoplasma, Rocky Mountain Spotted Fever, anaplasmosis, and perhaps a few others.
I have read that about half of those with Lyme also have at least one co-infections. I personally had Lyme and also babesiosis: Not Fun, but fully treatable once properly diagnosed and treated with the right medications.
The reason for telling you all this is to confirm what you have wisely already figured out: the co-infections are as important to diagnose and treat properly, and the treatments are often quite different from each other. My doc treated my Babesiosis first for several months, then switched antibiotics to treat Lyme, also for several months. I was a bit tired and weak for several months after treatment, as you would expect after any serious illness -- but my health returned full force and I remain completely well about 8 years later. (There are those who say that Lyme etc. is never really killed off, but that situation occurs to my understanding only if Lyme and all the co-infections were not properly *diagnosed* and/or not properly *treated*.)
This is the long way around to answer your question, "how do you know which panel to order for most accurate testing?" There are many possible co-infections carried by 'Lyme' ticks, and it takes a wise and experienced MD with a strong background in Lyme and its co-infections to be alert to which are in play. Your PCP may mean well, and if s/he is willing to learn a lot and very fast, it may work ... but I would want an already-experienced Lyme doc, because there are so many subtle and complex aspects to Lyme and its treatment, and there is much confusion in the medical community as mentioned above.
Lyme bacteria have a long reproductive cycle, and they are most susceptible to being killed by antibiotics only at certain times during that cycle. It takes a wise and knowledgeable MD to take this into account, and a less experienced and less enlightened MD could (without meaning to do so) fail to diagnose existing infections and fail to prescribe the right meds against each of the existing infections for the right length of time. This is not uncommon, because of the split in the medical community that will someday be sorted out, but not likely this week or this month or year.
One example: you may see references to 'post-Lyme syndrome': this is a term used by MDs who do not seem to understand Lyme well. For example, if a patient with a long-established case of Lyme is treated only with doxycycline for a relatively short period of time, then the Lyme bacteria may be so established in the body that the bacteria are not wiped out. A Lyme specialist MD might well say that the treatment was too little for too short a time and/or using the wrong antibiotics, while an MD who is *not* expert in Lyme may instead say that the standard treatment was plenty, and the patient's immune system is just over-reacting to the now-dead Lyme infection.
I would ask myself which explanation is more logical, and more careful -- and I would want to be treated until all the tests come back negative and all my symptoms are gone. Lyme treatment often takes months (not weeks like an earache would) because of the ability of Lyme bacteria to hide in the body and cartilage and/or because of Lyme's slooooow reproductive cycle, both of which situations prevent the antibiotics from having enough tries to kill the bacteria in a usual fairly short antibiotic treatment plan.
--------------------------
Like your PCP seems to be, many well-meaning MDs do not know enough about Lyme and the co-infections, and the best advice I have is to *find an MD who is a Lyme specialist*. There are too many interactions among the Lyme and co-infections for you or an inexperienced MD to try to sort out what to test for, how to read the tests, and how to treat the infections.
I did a quick search online for -- Georgia Lyme -- and got some links that look very promising. There is no test to be a Lyme specialist, so you will need to check out a potential MD with as many sources as possible. The internet is your friend, but Lyme docs also often keep their faces and names out of the media because state and local medical boards are sometimes loaded with old-style docs who believe a couple weeks of doxycycline all you need to be rid of Lyme, and those old-style docs can try to cause trouble for the more progressive and thoughtful MDs.
Comments and leads by other patients who have been helped by a particular Lyme doc may be willing to share their views in private messages (PMs) online and/or you may find less discrete comments just by searching for a doc's name online. Also what state of the union you are in can also make a difference how open people may be ... because in some states, the Lyme establishment wants to pull the medical licenses of docs who think Bigger Thoughts about Lyme. My state, California, protects docs who speak out with different views and theories, but I hear it's not so easy in some other places. So a little discretion may be called for.
Sorry to run on. Let us know how we can help -- now go get 'em! Lyme away!!
The first important thing to know about Lyme is that there is a tremendous split in the medical community on how serious Lyme is, how to diagnose it, and how to treat it. Lyme was recognized only in the last few decades, and the first docs who described and wrote about it believed that Lyme, a bacterial infection, needs treatment similar to many other bacterial infections: a few weeks of basic antibiotics and you're good to go. This approach works for so many bacterial infections that it seemed a reasonable view.
It turns out, however, that Lyme has aspects that are quite different from the usual bacterial infections we are more accustomed to.
For one thing, Lyme bacteria (formally called Borellia burgdorferi, or B.burgdorferi for short) have the capacity to burrow into areas of the body (such as cartilage) where the human immune system cannot easily reach into to kill the Lyme bacteria.
In addition, those hidden 'Lyme' bacteria often are accompanied by other infections which are not killed by the same antibiotics as Lyme, and if an MD does not understand this, then the bacteria can and do continue to cause illness and misery. 'Lyme' bacteria are in the same scientific category or family as the bacteria that cause syphilis, and without proper diagnosis and treatment, Lyme can do similar damage to its target: permanent damage to the brain and the body. Syphilis was close to being wiped out fifty years ago and is still treatable today, and Lyme is also treatable -- but first the doc has to test properly for Lyme and then know what medications to give and for how long. Most docs do not understand this...
... and that is why seeing a Lyme specialist is so important: (1) to diagnose and treat Lyme properly and fully (or to rule it out), and (2) to diagnose and treat properly and fully other infections that often need different medication from what kills Lyme, such as these other illnesses, often referred to as a group as 'co-infections': babesia, bartonella, ehrlichia, mycoplasma, Rocky Mountain Spotted Fever, anaplasmosis, and perhaps a few others.
I have read that about half of those with Lyme also have at least one co-infections. I personally had Lyme and also babesiosis: Not Fun, but fully treatable once properly diagnosed and treated with the right medications.
The reason for telling you all this is to confirm what you have wisely already figured out: the co-infections are as important to diagnose and treat properly, and the treatments are often quite different from each other. My doc treated my Babesiosis first for several months, then switched antibiotics to treat Lyme, also for several months. I was a bit tired and weak for several months after treatment, as you would expect after any serious illness -- but my health returned full force and I remain completely well about 8 years later. (There are those who say that Lyme etc. is never really killed off, but that situation occurs to my understanding only if Lyme and all the co-infections were not properly *diagnosed* and/or not properly *treated*.)
This is the long way around to answer your question, "how do you know which panel to order for most accurate testing?" There are many possible co-infections carried by 'Lyme' ticks, and it takes a wise and experienced MD with a strong background in Lyme and its co-infections to be alert to which are in play. Your PCP may mean well, and if s/he is willing to learn a lot and very fast, it may work ... but I would want an already-experienced Lyme doc, because there are so many subtle and complex aspects to Lyme and its treatment, and there is much confusion in the medical community as mentioned above.
Lyme bacteria have a long reproductive cycle, and they are most susceptible to being killed by antibiotics only at certain times during that cycle. It takes a wise and knowledgeable MD to take this into account, and a less experienced and less enlightened MD could (without meaning to do so) fail to diagnose existing infections and fail to prescribe the right meds against each of the existing infections for the right length of time. This is not uncommon, because of the split in the medical community that will someday be sorted out, but not likely this week or this month or year.
One example: you may see references to 'post-Lyme syndrome': this is a term used by MDs who do not seem to understand Lyme well. For example, if a patient with a long-established case of Lyme is treated only with doxycycline for a relatively short period of time, then the Lyme bacteria may be so established in the body that the bacteria are not wiped out. A Lyme specialist MD might well say that the treatment was too little for too short a time and/or using the wrong antibiotics, while an MD who is *not* expert in Lyme may instead say that the standard treatment was plenty, and the patient's immune system is just over-reacting to the now-dead Lyme infection.
I would ask myself which explanation is more logical, and more careful -- and I would want to be treated until all the tests come back negative and all my symptoms are gone. Lyme treatment often takes months (not weeks like an earache would) because of the ability of Lyme bacteria to hide in the body and cartilage and/or because of Lyme's slooooow reproductive cycle, both of which situations prevent the antibiotics from having enough tries to kill the bacteria in a usual fairly short antibiotic treatment plan.
--------------------------
Like your PCP seems to be, many well-meaning MDs do not know enough about Lyme and the co-infections, and the best advice I have is to *find an MD who is a Lyme specialist*. There are too many interactions among the Lyme and co-infections for you or an inexperienced MD to try to sort out what to test for, how to read the tests, and how to treat the infections.
I did a quick search online for -- Georgia Lyme -- and got some links that look very promising. There is no test to be a Lyme specialist, so you will need to check out a potential MD with as many sources as possible. The internet is your friend, but Lyme docs also often keep their faces and names out of the media because state and local medical boards are sometimes loaded with old-style docs who believe a couple weeks of doxycycline all you need to be rid of Lyme, and those old-style docs can try to cause trouble for the more progressive and thoughtful MDs.
Comments and leads by other patients who have been helped by a particular Lyme doc may be willing to share their views in private messages (PMs) online and/or you may find less discrete comments just by searching for a doc's name online. Also what state of the union you are in can also make a difference how open people may be ... because in some states, the Lyme establishment wants to pull the medical licenses of docs who think Bigger Thoughts about Lyme. My state, California, protects docs who speak out with different views and theories, but I hear it's not so easy in some other places. So a little discretion may be called for.
Sorry to run on. Let us know how we can help -- now go get 'em! Lyme away!!
Sorry to hijack this thread but how do you know which panel to order for most accurate testing? Theres so many and for the coinfections as well. Would hate to miss getting something checked. My pcp has no clue on all this and ill prob have a tough time getting him to fill out the paperwork. Thanks and again sorry for hijacking, just seems jackie is very knowledgeable on this
... and one more note: the reason Lyme specialists like the IGeneX test is that it operates more precisely than the older tests called Western blot and ELISA.
W.blot/ELISA tests rely on your immune system's reaction to the presence of Lyme bacteria in the body, but unfortunately the Lyme bacteria are able to *suppress* your immune system's reaction to the bacteria, so the W.blot/ELISA tests can well show negative ('no Lyme') when really there IS Lyme present.
A key advantage to the IGeneX test is that it does *not* rely on your immune system reaction to Lyme, but instead looks directly for the Lyme bacteria itself. Thus a direct test, not an indirect test -- like the difference between (1) being able to directly see a burglar in your house (the IGeneX test) as opposed to (2) seeing no burglar and only some footprints in the flower beds that may or may not have been a burglar (ELISA/Western blot tests).
-- The older ELISA/Western blot tests are still used by docs who grew up using them over the decades, and if the tests were good enough then, why wouldn't they be good enough now blah blah. Docs are only human, and they stick with what they are used to, and the companies that make ELISA/W.blot kits are still making them, so they must be all right ... right?? Well, sometimes getting used to new stuff is hard.
In addition, knowledge about Lyme disease has increased over the last few decades, esp. since the infection has continued to spread across the country. Now the older docs should consider the newer, better tests, but it takes a while for even docs to adapt. (My Lyme doc used both the IGeneX test AND the W.blot/ELISA tests on me and a family member, and you could ask your doc to do all tests if you like ... it just costs money.)
W.blot/ELISA tests rely on your immune system's reaction to the presence of Lyme bacteria in the body, but unfortunately the Lyme bacteria are able to *suppress* your immune system's reaction to the bacteria, so the W.blot/ELISA tests can well show negative ('no Lyme') when really there IS Lyme present.
A key advantage to the IGeneX test is that it does *not* rely on your immune system reaction to Lyme, but instead looks directly for the Lyme bacteria itself. Thus a direct test, not an indirect test -- like the difference between (1) being able to directly see a burglar in your house (the IGeneX test) as opposed to (2) seeing no burglar and only some footprints in the flower beds that may or may not have been a burglar (ELISA/Western blot tests).
-- The older ELISA/Western blot tests are still used by docs who grew up using them over the decades, and if the tests were good enough then, why wouldn't they be good enough now blah blah. Docs are only human, and they stick with what they are used to, and the companies that make ELISA/W.blot kits are still making them, so they must be all right ... right?? Well, sometimes getting used to new stuff is hard.
In addition, knowledge about Lyme disease has increased over the last few decades, esp. since the infection has continued to spread across the country. Now the older docs should consider the newer, better tests, but it takes a while for even docs to adapt. (My Lyme doc used both the IGeneX test AND the W.blot/ELISA tests on me and a family member, and you could ask your doc to do all tests if you like ... it just costs money.)
and PS here is the main website page with a list of links to more information on the website. Your doc may find useful data there about how the test works.
http://www.igenex.com/Website/
http://www.igenex.com/Website/
Welcome --
I think the test kit itself may be free, but *processing* the kit after the sample has been taken is what costs. They are pleasant people to deal with, and if you have any questions, just call them. They are in Calif., so on west coast time. (800) 832-3200 is the main number.
Here are two links if you haven't seen them already:
www.igenex.com
www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf
Let us know if your doc doesn't like the test, and we can try to locate some additional info online or on the IGeneX site itself.
Take care -- all good wishes to you --
I think the test kit itself may be free, but *processing* the kit after the sample has been taken is what costs. They are pleasant people to deal with, and if you have any questions, just call them. They are in Calif., so on west coast time. (800) 832-3200 is the main number.
Here are two links if you haven't seen them already:
www.igenex.com
www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf
Let us know if your doc doesn't like the test, and we can try to locate some additional info online or on the IGeneX site itself.
Take care -- all good wishes to you --
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