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Help finding an LLMD near Kansas City, MO
Hi, I am having neurologic issues and want to be tested for lyme disease. I went to my GP with the form from Igenex and he wouldn't sign it. I am having trouble finding an LLMD near me that can see me sometime in the near future. I did get a referrals from ILADS and the Lyme Disease Association. The good LLMD can't get me in until August 2016. The others don't do their testing through Igenex and this makes me nervous. One person on the ILADS list is an APRN and works out of her home. Is this something that would raise a red flag? I was wondering if there was anyone who knows of good doctors within a 4-5 hour drive of Kansas City?
oops, my bad. I hit 'post' and then saw on your first post exactly what I just recommended about 'need LLMD within ...'
you already had it covered! :)
you already had it covered! :)
Welcome to MedHelp Lyme -- sorry you are running into the strange politics of Lyme -- but it's not uncommon. There is a quiet network that helps locate resources, and this site is one of them. Glad you found us!
Your GP, who declined to sign your IGeneX test order, is lining up with so-called mainstream medicine and may really believe 'old think' about Lyme, or the doc may be concerned that the local or state medical board might come down on him pretty hard for straying from the path of Old Think.
Good for you for tracking down ILADS etc. -- that's the approach I would take, and I'd suggest you keep searching out similar sources, but also link into local or state Lyme-oriented patient groups. They often don't advertise, but they are out there. I just searched online for
-- kansas city lyme --
and got some very promising leads. Organizations like that can help you find Lyme docs nearby, sometimes just by looking through their website. They likely will *not* post the names of local Lyme docs on the organizations' websites, to keep some privacy for the docs and keep cranky and out-of-date state and local medical boards from targeting such docs.
Sounds very underground, and I suppose it is a bit, but in some states, Lyme docs really do have to keep a low profile to avoid hassles. (I am in California, where docs by law have protection to practice medicine as they think fit and not according to the rulings of the state and local medical boards. I don't know the approach of KS or MO or IA etc. -- some of those states may be more open-minded and thus make it easier to find a doc nearby.)
The long wait to see a Lyme doc now is likely due to this being the end of summer, and there are gazoodles of people who got bitten during the recent summer months. Once the docs catch up with the summer backlog, it won't be so complicated, but I would do what you are, which is keep looking to see a doc as soon as possible.
----------------------
About IGeneX testing: It's good you are aware of IGeneX -- to my understanding, it's the newest test available and is considered superior by some or many Lyme specialist MDs, because the test looks for *direct* evidence of Lyme infection in your blood, that being DNA genetic material from the Lyme bacteria.
The older tests (Western blot and ELISA) are not useless, but they don't look for direct evidence of Lyme in your blood -- instead, these older tests look for *indirect* evidence, in this case the reaction of your immune system fighting the bacteria. The problem with these older tests is that Lyme bacteria are very tricky and have the ability to *suppress* your immune system activity. Result: the test may well come back negative, and the doc says, "No evidence of Lyme." ... And therefore no diagnosis or treatment is given.
(My Lyme doc tested me with both the IGeneX PCR test *and* the ELISA and Western blot tests, just to cover all the bases, and I came up positive on all three tests ... which my doc said was unusual and indicated that I had a very strong immune system.)
Sorry for all the detail, but this may give you some understanding of the issues your docs are dealing with.
========================
Two more quick notes:
-- You say: "The good LLMD can't get me in until August 2016."
Be sure you are on a cancellation list with the doc's office, and tell them how soon you can get to their office after getting a call from them. Then be ready to drop everything when the call comes. You might or might not want to alert your employer etc. that you may have to leave on short notice for 'a family matter'. That's a judgment call on your part, depending how far away the doc is etc.
-- You say: "The others don't do their testing through Igenex and this makes me nervous."
IGeneX is more accurate, but the ELISA and Western blot tests are useful IF positive. (The risk with ELISA and W.blot is that you may get a false negative, meaning you have Lyme but the test wrongly says you don't.) My Lyme doc ran all three tests on me (IGeneX, ELISA and W.blot) and was impressed that the ELISA and W.blot tests came back strongly positive -- and with a positive on those tests, I think the doc may not need to run the IGeneX test, since a positive test is a positive test, full stop.
========================
About your RN: I'm not basing my comments on any knowledge or experience (so fwiw), but my question would be what services or tests she proposes to perform. Can she authorize lab tests? If so, I might go for it, so that I would have hard data and then be able to decide whether to go find a Lyme specialist.
Or you could double book now (with the RN and with the Lyme doc) just to reserve a place in line with the doc ... and if you find answers before you get in to see the doc, then you can cancel the appointment (with as much notice to the doc as possible, so another patient can be notified to fill the slot). Those long wait lists you are hearing about probably include multiple booking by patients ... Patient X books for the first available appointment, which is a month from now, and also does the same booking with 3 or 4 other docs ... and when Patient X actually scores the first appointment out of the 3 or 4 possibilities, then (assuming the doc is a good fit) Patient X cancels the appointments with the other docs. You know: like at a popular restaurant. :) It's rude, but it's your health we're talking about.
Also note that some people go long distances to see a good LLMD, because once diagnosed and on treatment, follow up appointments may be only once a month if things are rolling along well. (That's how it worked with my Lyme doc, and I was only a short drive from his office. Some docs are even okay with doing follow ups by phone, but it probably depends on several variables.)
One more thing:
You might post another message here titled 'Need LLMD within 4-5 hrs drive from Kansas City' and see what you get back. People don't always read all the way to the bottom of these messages, so a short and specific title can get a helpful answer sometimes.
Your GP, who declined to sign your IGeneX test order, is lining up with so-called mainstream medicine and may really believe 'old think' about Lyme, or the doc may be concerned that the local or state medical board might come down on him pretty hard for straying from the path of Old Think.
Good for you for tracking down ILADS etc. -- that's the approach I would take, and I'd suggest you keep searching out similar sources, but also link into local or state Lyme-oriented patient groups. They often don't advertise, but they are out there. I just searched online for
-- kansas city lyme --
and got some very promising leads. Organizations like that can help you find Lyme docs nearby, sometimes just by looking through their website. They likely will *not* post the names of local Lyme docs on the organizations' websites, to keep some privacy for the docs and keep cranky and out-of-date state and local medical boards from targeting such docs.
Sounds very underground, and I suppose it is a bit, but in some states, Lyme docs really do have to keep a low profile to avoid hassles. (I am in California, where docs by law have protection to practice medicine as they think fit and not according to the rulings of the state and local medical boards. I don't know the approach of KS or MO or IA etc. -- some of those states may be more open-minded and thus make it easier to find a doc nearby.)
The long wait to see a Lyme doc now is likely due to this being the end of summer, and there are gazoodles of people who got bitten during the recent summer months. Once the docs catch up with the summer backlog, it won't be so complicated, but I would do what you are, which is keep looking to see a doc as soon as possible.
----------------------
About IGeneX testing: It's good you are aware of IGeneX -- to my understanding, it's the newest test available and is considered superior by some or many Lyme specialist MDs, because the test looks for *direct* evidence of Lyme infection in your blood, that being DNA genetic material from the Lyme bacteria.
The older tests (Western blot and ELISA) are not useless, but they don't look for direct evidence of Lyme in your blood -- instead, these older tests look for *indirect* evidence, in this case the reaction of your immune system fighting the bacteria. The problem with these older tests is that Lyme bacteria are very tricky and have the ability to *suppress* your immune system activity. Result: the test may well come back negative, and the doc says, "No evidence of Lyme." ... And therefore no diagnosis or treatment is given.
(My Lyme doc tested me with both the IGeneX PCR test *and* the ELISA and Western blot tests, just to cover all the bases, and I came up positive on all three tests ... which my doc said was unusual and indicated that I had a very strong immune system.)
Sorry for all the detail, but this may give you some understanding of the issues your docs are dealing with.
========================
Two more quick notes:
-- You say: "The good LLMD can't get me in until August 2016."
Be sure you are on a cancellation list with the doc's office, and tell them how soon you can get to their office after getting a call from them. Then be ready to drop everything when the call comes. You might or might not want to alert your employer etc. that you may have to leave on short notice for 'a family matter'. That's a judgment call on your part, depending how far away the doc is etc.
-- You say: "The others don't do their testing through Igenex and this makes me nervous."
IGeneX is more accurate, but the ELISA and Western blot tests are useful IF positive. (The risk with ELISA and W.blot is that you may get a false negative, meaning you have Lyme but the test wrongly says you don't.) My Lyme doc ran all three tests on me (IGeneX, ELISA and W.blot) and was impressed that the ELISA and W.blot tests came back strongly positive -- and with a positive on those tests, I think the doc may not need to run the IGeneX test, since a positive test is a positive test, full stop.
========================
About your RN: I'm not basing my comments on any knowledge or experience (so fwiw), but my question would be what services or tests she proposes to perform. Can she authorize lab tests? If so, I might go for it, so that I would have hard data and then be able to decide whether to go find a Lyme specialist.
Or you could double book now (with the RN and with the Lyme doc) just to reserve a place in line with the doc ... and if you find answers before you get in to see the doc, then you can cancel the appointment (with as much notice to the doc as possible, so another patient can be notified to fill the slot). Those long wait lists you are hearing about probably include multiple booking by patients ... Patient X books for the first available appointment, which is a month from now, and also does the same booking with 3 or 4 other docs ... and when Patient X actually scores the first appointment out of the 3 or 4 possibilities, then (assuming the doc is a good fit) Patient X cancels the appointments with the other docs. You know: like at a popular restaurant. :) It's rude, but it's your health we're talking about.
Also note that some people go long distances to see a good LLMD, because once diagnosed and on treatment, follow up appointments may be only once a month if things are rolling along well. (That's how it worked with my Lyme doc, and I was only a short drive from his office. Some docs are even okay with doing follow ups by phone, but it probably depends on several variables.)
One more thing:
You might post another message here titled 'Need LLMD within 4-5 hrs drive from Kansas City' and see what you get back. People don't always read all the way to the bottom of these messages, so a short and specific title can get a helpful answer sometimes.
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