Lyme Disease Community
Help!!!!!
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Help!!!!!

Can someone give me a Lyme literate medical doc in Hampton roads va? One person gave me a few references but most of them are no longer in business. I have popping and cracking joints, horrible fatigue, sore muscles and bad depersonalization, been to 6 doctors, I have had 3 or 4 Lyme disease tests and all were considered negative because only band 41 came up positive in both igm and igg, so all doctors said all of my Lyme test were negative. All of my doctors say I have horrible anxiety and depression and that's what's causing all of this. But sometimes I just cannot believe that anxiety and depression can cause all of these physical symptoms. If anyone knows of a LLMD in va especially in the Hampton Roads area please send me a message. and any opinions on my situation would be greatly appreciated. Thank you.
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Avatar_f_tn
Here are some websites that may have referral functions.

Any responses you may receive will likely come in private messages to you on this website, to protect the LLMDs from hardline non LLMDs making complaints to the local or state medical boards.

You can also search the geographic area and LLMD, like "Norfolk LLMD" or whatever city or area seems reasonable, or search several that way if there is no easy overlap.

Sorry to hear you are still looking, but above all -- don't give up!

Best wishes --
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Hi,
I didn't get the website referrals?
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Oops!  Sorry.  Here they are:

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)

and google/search "LLMD [your geographic area]" -- you'll be surprised what comes up.

Cheers --
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Hi, I looked and there is a few far away that don't take insurance and I don't have the money for it. What should I do? Should I order the blood tests from the IGeneX lab and send it off? Do I draw the blood myself or do I have to take it to a doctor? I was thinking I would do that first to see if that Lyme test came up positive then I'd go to an LLMD. Do you think that's a good idea?
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Avatar_f_tn
You could keep looking for an LLMD nearby.  Many of them keep a very low profile to avoid conflicts with the MD establishment over Lyme diagnosis and treatment.

All tests, including Igenex, need interpretation to make them worthwhile.  You really should see a dr to get these things done right.  Call a couple of the docs who seem like possibilities and see if they will let you pay over time or take credit cards or whatever.  I'm a big do-it-yourselfer, but not when it comes to medical treatment.  There is too much unclear about Lyme and its coinfections and how to read the tests and the symptoms without a doc interpreting.  
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So I went to ilads.org and went to the referral part. And I found one reccomemdation for a doctor close to me. So because this doctor is apart of ilads.org does that mean they are an LLMD? and if I call can I say that I would like to get an appointment to be looked at for Lyme Disease? I hope this doctor is an LLMD and this is the answer to my problems. Also, I forgot to mention that my first Lyme test was an ELISA and it came up  HIGHLY POSITIVE. so they gave me a western blot and band 41 in both igm and igg came up positive but they said it was a negative Lyme test. Band 41 has came up positive in both my igm and igg every Lyme test, and also ive had a positive ELISA so doesent that say something? I don't understand why they keep telling me I don't have Lyme? Please help me. I have been going through this for a year now and I feel like I'm in hell, every doctor I have been to just keeps saying it's anxiety and depression and I just don't think it is. I can't take this anymore I'm miserable. Please get back to me as soon as you can. Thank you so much for your help.
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Avatar_f_tn
Good for you, taking action!  I know how hard that is to do when you feel so lousy.

About the tests:  the reason there are two tests is because the first one (ELISA) is so sensitive that it can overshoot and accidentally report positive where the result should be negative.  If the test comes back positive, then to try to filter out the false positives, a second test (Western blot) is done, to balance the information.  The Western blot has a high number of false *negative* results, and between the two, they are considered to balance each other out.  The problem is, tho, that the tests are sufficiently inaccurate that they should not (so I read) be relied on as the final word, tho many doctors do so.  The test results have to be read in conjunction with your history and symptoms, NOT in spite of them.

I was told that if a while has gone by since I was first infected, then the tests would more likely show a false negative, meaning that I had Lyme but the tests wrongly said I didn't.  The reason given was that ELISA and Western blot focus on measures the antibodies your body makes to fight the bacteria, and after a while, your immune system figures the bacteria must be dead, and it packs up and stops making antibodies.  So if you are tested after your immune system goes back to sleep, the antibodies will be low, and the tests will be (wrongly) negative.  This is complicated by the fact that Lyme bacteria have a trick of creating a slimy veil for themselves inside the body, and the immune system can't see through the veil, there no antibodies, therefore negative tests.  (I think of it as knowing I am in a bad part of town if I see a lot of police cars:  I may not recognize bad guys on that street, but I can sure see the cop cars.  And where there are cop cars, they are chasing bad guys and know the neighborhood a lot better than I do.)

Also:  I was just reading now on a very respected mainstream medical center website (University of Maryland medical center, not a hardcore Lyme website) that another problem with these tests is that they measure antibodies floating in the bloodstream, and if the antibodies are heavily engaged in destroying the bacteria, then there will not be enough of the antibodies free-floating in the bloodstream to be measured, thus a false negative response to the test.

In other words, medicine may think it's a science, but it is really an art employing scientific tools.  The trick is finding a doc who understands that.

====

Back to your email:  Band 41 on the Western blot is apparently not diagnostic of Lyme -- it is a band that reacts to a lot of things, so Lyme diagnosis can't be made on just a positive Band 41...but it could be Lyme, and also it could be other things.

A Lyme diagnosis should be made (so I read) on tests, symptoms and history:  not just tests.  That is what LLMDs do:  look at the whole person.  A year of feeling awful as you have is a history of symptoms.

There is another test Lyme docs sometimes do, called PCR testing.  Instead of looking for antibodies your body is making against the bacteria, if looks for broken bits of the actual Lyme bacteria.  Mainstream docs sneer at this test for reasons I do not know, but Lyme docs often use it.  It is a test offered by a lab called IGeneX in California, and maybe some others too.  nonLLMDs either don't trust or understand (or both) that test, but my LLMD used it.

Sometimes a LLMD will do an 'antibiotic challenge' by giving you a short course of antibiotics to see if it stirs up your immune system to attack the bacteria, then rerun the tests to see if there is a higher positive.  Just another way of trying to figure out what's going on.

AND it's possible have other 'bonus' diseases carried by Lyme ticks.  There are separate tests for these diseases and they often need separate meds from Lyme.  Your docs prob. didn't test for these.

In other words, your current docs, while meaning well, have not gone the extra LLMD-style mile.

===
Now to answer your specific question:  Yes, I would definitely go see that LLMD.  Take copies of all your test results with you.

I understand and remember all too well the anxiety and depression you describe.  I too had it, and it is very common in Lyme.  Lyme also messes with the endocrine system, and I learned that my thyroid function was terrible.  Now that I'm well into treatment, I can look back and see how bad off I was physically, mentally and emotionally.  It's a complete package.  Complete misery.  

Again, GOOD FOR YOU for finding an LLMD!  Any doc who lists on ILADS is almost certainly an LLMD -- it's a voluntary organization of medical people (docs, scientists, etc.)  The trick is that because Lyme is still a developing area of medicine, not all LLMDs are created equal.  Some are cutting edge and fabulous.  Some seem to me to be a bit nutty.  Some are cutting edge and also a bit nutty.  The only way to find out if this one is the doc for you is to go see him.  It is not uncommon to switch docs -- I love my LLMD for giving my life back to me, but the approach didn't take into account some of the side effects of treatment that for me were strong, so I'm now seeing someone else.  It's like a dating:  there are a lot of single people out there, but not all of them are a good match for me.

I say go for it!  Good for you for plowing ahead.  Stay in touch and let us know how you do, okay?  

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Avatar_f_tn
Ok,
So I'll try and make an appointment with this doctor then. But it says that he/she is just a primary care physician. Can he/she still be an LLMD? Also, at my first appointment will they give me the right kind of Lyme test to k pw of I do or do t have Lyme. Because if I don't I do t want to continue spending my money on something I don't have. I just hope after the first appointment they will be able to tell me if I have Lyme or not. I am so worried but almost excited because hopefully this doctor can cure what's going on in my body. So what other things can cause a positive band 41 except for Lyme? I would just like to know to make sure I have been tested for those otter diseases also. I'm going to call that doctor tomorrow and try and make an appointment. Thank you so much for your help.
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Avatar_f_tn
I would do what you are doing, going to see that doc.

"LLMD" is not an official designation.  It is a phrase (short for "Lyme-Literate Medical Doctor") that those of us with Lyme use to designate an MD who understands Lyme well.

An LLMD can be any kind MD:  a general practitioner (GP), a internist (specializing in internal medicine, meaning the internal workings of the body, an immunologist, a rheumatologist, an infectious disease (ID) doctor -- just any doctor who has an interest and spends time learning about Lyme and cutting edge research being done.

So it's fine that your doc is primary care -- what matters is that s/he in interested enough to be on the referral list at the ILADS website, since that is the main group for LLMDs.  Membership is voluntary and there are no tests that I know of to get membership -- it's just docs who are open-minded and want to learn more.  That said, there are some LLMDs who (just like other docs) are either not very good docs or just aren't a good fit for you personally.  The only way to know is go see him/her.  Frustrating, I know, but that's all you can do.

Take copies of all your Lyme tests and other recent blood work, tests, etc. with you if you can.  It helps the doc fill in the picture.

As to band 41 showing up on your test, a positive result like you got can be caused by any spiral-shaped bacteria.  Lyme is in that group, but so are some other bacteria.

Can the new doc tell you after your first appointment for certain that do or don't have Lyme?  I don't know.  He/she may want to run some additional tests, or give you a short course of antibiotics and then test again to see if it stirs up your immune system and gives a clearer test results.  If Lyme were easy to diagnose and easy to cure, we all wouldn't be going through all the twists and turns to get well.

If it's not Lyme, then the doc might be able to diagnose what it actually is.  No way to know but go check it out!  Best of luck -- let us know how it goes, okay?
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I called the doctor. She hasn't taken any new patients in four years and doesen't intend to. Im just ready to give up at this point.
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Avatar_f_tn
No one can fight this for you.  You have to do this yourself, for yourself.

Ask the doc's office if they can recommend another doc.
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So I found an infectious disease doctor a few hours away from me. I actually got to ask a few questions while scheduling the appointment and thru said he'll gov IV antibiotics and whatever else is nescessary to get me better. I did not get a referral about him from one of the Lyme sites. I think I just came upon him. They did not say he was an LLMD but they did say he will give long course antibiotics or whatever else is necessary. What kind of questions should I ask to make sure he's the right doctor for me and knows a lot about Lyme? I just want to make sure I'm fully prepared. Thank you for your help.
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