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Is this worth looking into...
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Is this worth looking into...

I have a question about Lymes and Anxiety...  I have had anxiety all my life! On and off of course and am stable more often that not.  I've been on zoloft since for about 15 years and its worked very well me.  About 3 months ago i had a relapse in my anxiety after some stressors, the flu and not taking my medication properly.  I immediately got back on my meds and went back to my counselor.  However have not seen substaintial results.  

So one thought in my head is, thinking back to a time when I got bit by a deer tick about 8 months-a year ago.  The more I think about how severe my anxiety is I wonder if I have lymes?  What do I have to do to get the ball rolling to get checked?  Because I know that testing can be unreliable.  I would like to go see a lymes specialist.  

Any feeback would greatly be appreciated!!!!!
Thank You
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As one who suffers from Lyme anxiety I can tell you that in my case it has gotten worse through the years and has forced me to increase my medications quite a bit. It's been in my body 20+ years.

What you need to do is find an LLMD (Lyme literate doctor) you can contact ILADS dot org and contact them,asking for an LLMD closest to where you live. An LLMD can determine if you have Lyme or not, and if you do,  put you on the correct medications.

It's very smart of you to connect the two in your mind. Hang in there.
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Ditto mojo's message above.

The email for a referral is

contact  [at]   ILADS  [dot]  org

Tell them your location near what city and how far you can travel.  Such as, can or cannot get to NYC or prefer not to.

I agree with the way you have analyzed your situation and symptoms -- it's what I would do too.  Let us know how you do, okay?  Best wishes --
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Thank you both very much.  Would I need to see my primary care doctor first?  And obtain a referral from them.  If I do indeed have lymes and catch it early enough will my anxiety get better?
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Ah, here's where it gets complicated.  I would start with the regular doc, but don't be surprised if s/he gives you a short course of doxycycline and nothing else.  But after 8 months of infection, it may well not work, based on what I read and hear.  

Other meds can work, however, docs who are not Lyme specialists generally don't go that route.  It often takes going out of network to a Lyme specialist who thinks bigger thoughts than regular docs, and there is a lot of animosity toward the Lyme docs, who are often called quacks by 'regular' docs.  

Also, infectious disease docs don't much believe in Lyme:  a couple weeks of doxy and you're done, and if still have symptoms, it's considered an autoimmune reaction to a cured infection.  I would NOT in any event take steroids knowing I had Lyme, which is a bacterial infection and needs your immune system up and fighting, not suppressed by steroids.

But I'm getting ahead of the situation.  By all means start with your regular doc and see how far you get, then if you like, let us know what you heard and what was prescribed and recommended, and we can tell you of our experiences, to give you some thoughts.

ALWAYS get copies of ALL tests runs by any doc -- you may need them in the future, and you never know later if you get everything, since docs don't like spending on photocopies.  
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Just to give you some hope, although I am not there yet I know a friend who was cured of Lyme and her anxiety went away.

So there is hope for both of us. :)
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Thank you much for the info....
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Thank you!! I could use a little hope these days :) did your friend have anxiety before the lymes as well, because I've always had anxiety but never like this and it's lasts most of the day which they say is also a symptom of lymes but who knows I guess ..
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Anxiety is definitely a symptom of Lyme, and quite common among us too.  I was so messed up with fatigue and confusion that I don't recall being clearheaded enough to know if I was anxious.  One big ball of misery is what it was.  But I'm fine now.  :)  It's definitely worth the hassle of getting treated.
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I don't know about my friend but since I had Lyme in my body over 20 years, I look back and remember anxiety but I now realize it was always Lyme and slight depression too.

I  know that a bad situation, for me, my fiancée has been stuck over seas much longer than expected, makes things much worse for me.

I had to increase my meds just to get through the day. My LLMD says it should go away once cured.
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Hi Guys,
I just wanted to give you quick update that really is not much. I have an appointment with a new primary care psysician today.  My friend from work that was diagnosed with lymes gave me the name of her infectious disease doctor that diagnosed her.  I know a lot are even skeptical of infectious disease doctors diagnosing/treating lymes but he does specialize in lymes.

So i'm going to the doctor today and ask for a referral for that and hopefull get the ball rolling and see.  

What does everyone think?  Good start?
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  You've made a start ---- and thanks for checking back in.
The 'proof will be in the pudding' as to whether your new PCP will treat Lyme disease for longer than the Infectious Disease Society mandates

There ARE a few out there so fingers crossed that you've found one.

When he has you get a blood test for the presence of Lyme disease, would you make note of the lab it's sent to and what tests they perform.
You can do that easily by  just asking for a photocopy of your lab request form. They have to comply. It's yours. :) Or they will give you a carbon copy of it.

Barring that when you get the results back please ask for a copy of the report. I can't tell you how important it is that people get copies of all lab reports. Not just because the people here are 'nosy' (grin) but for your own sake. As you learn more and more about Lyme you'll see why copies of everything is important.

But I sincerely hope this new PCP will treat you effectively.




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Thank you for your reply.  Hopefully my primary care physician will not be treating me, i'm hoping that he will refer me to the infectious disease doctor and he also specializes in Lymes!  Thats even better than a PCP right?
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You said:
"i'm hoping that he will refer me to the infectious disease doctor and he also specializes in Lymes!  Thats even better than a PCP right?"

I'm sorry ---- that's not an easy question to answer.
The definition of 'specialist in Lyme' is a muddy mess since an ID doctor can say that and treat for only 30 days with a much lower dose of antibiotics than an 'good' ILADS doctor would.

Your PCP, who also 'specializes' in Lyme disease could do the same.

Both of them MIGHT give you long term antibiotics.

I will stay hopeful (though skeptical, sorry) that you receive treatment up to ILADS standards.
Here are their Guidelines:
http://www.ilads.org/files/ILADS_Guidelines.pdf

It's long. Yes. But it's extremely important that people understand some whys and wherefores of treatment for Lyme---- a VERY serious disease if left untreated or under-treated. If your ID doctor follows THEIR Guidelines the under-treated part is the most worrisome aspect.

This disease is NOT like other diseases. That was the hardest thing for me to understand. There's no "here take this pill for XXX days" and you're cured. Why that isn't true depends on the patient being willing to read, read, read all sides. Which it seems as if you are, since you're here asking questions. :)

Good luck.,
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Thats where the confusion is coming in and its my fault, I wrote it wrong.  The infectious disease doctor specializes in Lymes..
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Thank you for the guidlines.. i'm going to print them out, for myself and bring them to my appointment.
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If the infectious disease (ID) doc is in your network, it's worth a try, because it's not possible to know till you see them and they tell you how they propose to proceed whether it's a broadminded doc.

Let us know what you hear, okay?  We'll be happy to give out input based on our own experiences.

Best wishes!

PS  the Guidelines suggested above are a wondrous thing, but quite complex and poorly organized.  Don't get bogged down in them .... just know they are there and have useful information when you are ready and interested.  
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@nowhopefull

That wasn't a problem for me, but thanks for clarifying it. But same answer----- your ID doctor may or may not rx long-term, high-dose antibiotics.

I'm 'hopeful' that he will. But the law of averages say he won't, IF he abides by the IDSA Guidelines.

You might read it for yourself so you know what real Lyme experts say about Lyme.

About printing out that pdf---- I'm  almost 100% positive that he's read it. :(

And showing it to him might just make him irritated with you IF he's a Denialist (and most ID docs are). It never furthers a patient's treatment if a doctor is 'irritated' with them.

Here is a short article that is easier, faster to read and it might prepare you for his reaction: It's also best not to show it to him.

http://www.ilads.org/lyme_research/lyme_publications13.html

(Medical Revisionist = Denialist = most (but not all) ID doctors (about Lyme). For other diseases I would have no hesitation using one.)


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Thanks guys!

I wasn't going to show it to him, just to use as a reference haha.

Just so I understand you correctly cave76...you're saying that some doctors don't treat as much as the guidlines say?  Or they should treat over what they say?  (I hope now i'm not confusing you haha)
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If you're talking about the ILADS Guidelines (just so I'm not confused) not being followed------- the answer is  " most ID doctors will follow the IDSA Guidelines instead of the ILADS Guidelines".

So:
ILADS Guidelines ----- treat as long as needed to achieve remission. That can sometimes be months or years. And it often involves high doses and/or two antibiotics at the same time.

IDSA Guidelines ---- (Infectious Disease docs) mandate times for dosing from one doxycyline to perhaps up to 30 days. And that's ONLY if you have a bullseye rash, which only about 50 % of people do.

(That's an oversimplification of the IDSA treatment but just to show the difference.)

Another try: :)

ILADS Guidelines (Probably the best)
IDSA Guidelines (I wouldn't!)
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From the ILADS site:

THERE HAS NEVER BEEN A STUDY DEMONSTRATING THAT 30 DAYS OF ANTIBIOTIC TREATMENT CURES CHRONIC LYME DISEASE.

HOWEVER THERE IS A PLETHORA OF DOCUMENTATION IN THE US AND EUROPEAN MEDICAL LITERATURE DEMONSTRATING BY HISTOLOGY AND CULTURE TECHNIQUES THAT SHORT COURSES OF ANTIBIOTIC TREATMENT FAIL TO ERADICATE THE LYME SPIROCHETE.

SHORT TREATMENT COURSES HAVE RESULTED IN UPWARDS OF A 40% RELAPSE RATE, ESPECIALLY IF TREATMENT IS DELAYED.

(The caps are their's not mine. I'm not yelling. LOL)
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The Guidelines were written by an MD (and since added to by other MDs) who are ILADS-type docs:  they understand Lyme to be a complex disease that is often not killed off by a few weeks of doxycycline.

The other side of the argument is held by IDSA-type docs.  Infectious Disease Society of America = IDSA.  IDSA has been around a long time and is a voluntary group for MDs to belong to.  Over time, such a group can become a good place for the collected wisdom of infectious disease specialists, and so other docs naturally turn to such a group and their recommended treatments as a good source of reliable information.  After all, who knows better about an infectious disease than an infectious disease doctor!

It's logical and it usually works, but sometimes things go awry.  In this case, Lyme is such a recently-recognized disease that in the fumbling around of discovery and analysis, some things were concluded as fact that were not entirely accurate.  Normally, new data will be used to update the rules of the road for diagnosis and treatment, and thus progress occurs.

Unfortunately, progress came so fast in Lyme that the 'discoverers' of Lyme disease are still practicing medicine and are still high up in the IDSA pantheon of Those Who Are Correct, and the standards in place at IDSA have not changed as understanding of Lyme has progressed.  Science moves at a much faster clip now than it did just a few decades because of all the new diagnostic tools and meds docs have now, but human alas do not always keep pace.

It's human nature to cling to what one believed in one's younger years, and the IDSA docs appear to be living that approach.  They believe Lyme is rare, hard to get, and easy to cure with a couple weeks of doxy, but since they decided that, new research has shown than Lyme has particular characteristics that allow it hide from the human immune system, and so it can persistent after the two-weeks-of-doxy treatment except perhaps in the very earliest diagnoses .... yet many of us never see the tick or get a rash, and so we can be infected and not have the history that an IDSA doc relies on.

Also, the IDSA docs are not tuned in to co-infections, which are diseases completely unrelated to Lyme, but about half the time the Lyme ticks also carry one or more of these:  babesiosis, bartonella, rickettsia, and some others.  These infections need separate testing and treatment from Lyme, but the IDSA docs aren't up to speed on that.

Thus arose ILADS:  International Lyme and Associated Diseases Society.  The ILADS docs have kept observing and learning, and have saved many of us from lives of misery.  Thus a split in the medical community.  The original IDSA people think the more progressive ILADS people are quacks.

Like many organizations, IDSA has formulated the distilled wisdom of its members into diagnostic and treatment guidelines that other docs, including those who are not infectious disease specialists, are comfortable in relying on:  after all, who knows better about infectious disease than an infectious disease group of docs?

This approach usually works, but Lyme is a newly emerging disease, just as AIDS was a few decades ago.  I remember seeing one of the high-up docs from the CDC go on TV when AIDS was first recognized and everyone was panicking, thinking it could be passed along by a handshake or a sneeze, just like the flu.  This doc, suitable attired in long white coast, went on a national news conference to tell people to settle down, that you could ONLY get AIDS if you were (1) gay or (2) Haitian.  These were the two groups in which AIDS had been recognized at that time.  This is utterly ridiculous on its face:  bacteria don't care who you spend time with.

Sadly, Lyme has gone through something similar:  IDSA says you can get Lyme only in the Northeastern US and some isolated areas in the Northwest, and that two weeks of doxy will fix you up no matter how long you have been infected, and this disregards all the research occuring in the last few decades, as well as the common sense observation that ticks can't read maps and don't know where they are 'allowed' to live.

Lyme is everywhere, but the IDSA is still stuck on stupid, to be perfectly blunt.  The IDSA guidelines are however still respected by docs in other specialties, because that's how medicine works.  If a doc needs to know the best way to do heart surgery, he asks a heart surgeon.  Ditto with infectious diseases.

We are at a tipping point, however, and pretty soon (but not soon enough) the sheer weight of the evidence against the IDSA position will cause it to collapse.  But in the meantime, the rest of us are out here trying to figure out what's up and how to get well.

So to answer your question:  "you're saying that some doctors don't treat as much as the guidelines say?"  More accurately, the IDSA docs continue to treat as the IDSA guidelines say, and refuse to treat more aggressively as the ILADS guidelines say.

IDSA docs often think ILADS docs are committing malpractice, and there are some ILADS-leaning docs who are too far out there for my taste.  But an ILADS doc accurately diagnosed and treated me, after a bunch of other docs (including at least one infectious disease doc) just shrugged.  I was terrible ill, and none of them could figure it out.  One of those docs had the grace to say, "I know you are ill, but I just don't know what it is."  All the rest of them blew it off.

So there's the loooong story.  Whew.







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Thank you.. You guys are so kind and helpful...Its so nice to have people willing to help out :-)..
So I met with my new PCP, he was great.. Very knowledgeable, caring and willing to take the time out to get the whole story.  He suggested doing the lymes test, then if it comes back positive treat it obviously. He said if it comes back negative he would put me on two weeks of Doxycyline and if I see improvement within those two weeks would continue with another 4 weeks of it.  

I told him that I may want to see a Lyme's specialist and he said he personal doesn't think its necessary but he would refer me to anyone I would feel comfortable with.  So my plan is to do the blood work with this doctor and see what the result is most likely go see the ID Doc whether its negative or positive..
What do you guys think?  Any input.
Thanks in advance.
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If you have any questions about what I wrote earlier in this thread----

"When he has you get a blood test for the presence of Lyme disease, would you make note of the lab it's sent to and what tests they perform.
You can do that easily by  just asking for a photocopy of your lab request form. They have to comply. It's yours. :) Or they will give you a carbon copy of it.

Barring that when you get the results back please ask for a copy of the report. I can't tell you how important it is that people get copies of all lab reports. Not just because the people here are 'nosy' (grin) but for your own sake. As you learn more and more about Lyme you'll see why copies of everything is important."

Perhaps you didn't see it. So, hoping you'll find out what kind of test/what lab performed it.
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The doc sounds like a keeper so far.  See how it goes, and keep us posted!
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That is terrific that this doc will treat you for a couple weeks even if you test negative!  That's heresy according to the IDSA, but GREAT news for his patients.  

One problem is that the screening tests consistently miss 30-50% of actual Lyme patients.  Labs don't even run the Western Blot unless the screening test is positive.  Since your doctor is sympathetic, ask him to please order a Western Blot, regardless of the screening test result.  A Western Blot can show Lyme specific antibodies, even if it doesn't meet the CDC criteria.  His office could contact the lab to give these instructions if you've already done the blood draw.

I encourage you to take the 2 weeks of Doxy and do what it takes to get the other 4 he said he might prescribe.  But if you're still not completely well, then you need more.  If he won't, you'll have to find a LLMD who will (which will not be an infectious disease doc).
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Ricobord-I am almost positive WEstern Blot was on the order but I will double check.  I did not get the blood drawn yet but plan on doing it very soon.  

Cave76-I have a copy of the order and will get a copy of the results.  As most likely i'll end up taking it to a Lymes doc.

JackieCalifornia-Thank you and I definately will!
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Good for you! You're on your way to learning how to navigate the morass of Lyme diagnosis and treatment.  

(Note to self: and why should we have to do this?)
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Okay, I finally went and got my blood work done for lymes.  My Ricobord suggested requesting that I get the Western Blot.  The test were listed like this on the sheet: lyme, western blot, serum.
Is this good?
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Did you do an Igenex test?
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I don't think so.. I'm not sure what that is...
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