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my first post, diagnosed today and have questions

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Posted 5/9/2016 1:51 PM (GMT -5)
This is my first post as I was diagnosed with Lyme disease today. I have had symptoms for about 8 months, to include nerve, muscle, and joint pain all over my body. I went to the ER to start myself on doxycycline. I am concerned because I live in FL where lyme is rare. My rheumatologist (who was great and after 7 doctors was the first who tested me for Lyme) is referring me to an infectious disease doctor. I am wondering if anyone has advice on if I should see an infectious disease doctor (who doesn't appear to specialize in Lyme at all) or an ILADS doctor (who i would pay out of pocket for). What more would the ILADS doctor really do? I am concerned that I may need IV antiobiotics because of how severe my symptoms are.

Thank you,
Shanna

Post Edited (shanna j) : 5/9/2016 1:00:11 PM (GMT-6)

Posted 5/9/2016 2:16 PM (GMT -5)
Hi shanna, welcome to our community!

Just want to start off saying that Lyme Disease is not rare in Florida.

It's great that your Rheumatologist thought of Lyme disease testing...but unfortunately I don't have much faith in the ID Dr. for treating you.
I urge you to see an ILADS Dr. - as they are the specialists when it comes to lyme and coinfection treatment.

We can help you find one...just start a new thread titled: "Looking for LLMD in/near______, FL" and fill in the blank with the nearest larger city.
Posted 5/9/2016 2:17 PM (GMT -5)
Also, would like to suggest you take a look at the "New to Lyme?..Start Here!"thread that's at the top of the page. Lots of good information packed in there.
Posted 5/9/2016 2:18 PM (GMT -5)
Hi Shanna J,
Sorry to hear that you tested pos.

If you decide to do an antibiotic protocol then if possible see a LLMD or LLND. You very likely will have co-infections that will also need to be treated, lyme usually does not travel alone. I think IV-abx is only used when oral ABX has failed.
Posted 5/9/2016 2:40 PM (GMT -5)
Hi Shanna!
Welcome to our community! I'm so glad you found us.

Quite honestly, Lyme isn't rare anywhere any more. We have seen a lot of people from Florida here, as well as every other state. I was infected on the western side of the US in 1970, before "Lyme" was even known about for most people.

As Girlie said, if you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD (Lyme Literate Medical Doctor) or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ LLMD in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And a new resourcewww.LymeDoc.org


​
Posted 5/9/2016 2:50 PM (GMT -5)
Wow you have no idea what this site means to me right now! Thank you
Posted 5/9/2016 2:55 PM (GMT -5)
which test was used to get your diagnoses? I'm from Florida too South west part not diagnosed yet but going through the process.... just wanting to know if more people in my area is getting this. Thanks!
Posted 5/9/2016 3:04 PM (GMT -5)
Robby Vieira,
I live in central FL, east of Orlando. The test was done at Quest Diagnostics. It was just ordered as their Lyme disease" test. On my report it says "lyme disease autiibodies (IGG, IGM) immunoblot. I was positive for the 39 kd and 41 kd bands as well as AB blot (not sure what that is yet).
Posted 5/9/2016 3:33 PM (GMT -5)

shanna j said...
Wow you have no idea what this site means to me right now! Thank you

Actually, we likely do know how much this site means to you, because we were all once a new member and just finding out this stuff! But thank you! We are here to help however we can, just be sure to always double check on any information you get from anywhere, even here. We all need something different, because our bodies have different needs and deficiencies.
Posted 5/9/2016 5:08 PM (GMT -5)
Welcome to the community! So glad you have a diagnosis. That has to be a huge relief on some level!

I just want to echo sentiments in relation to infectious disease Dr.s. Peeps on the boards offered their perspective to me when I gave an update about going to see an IDD, and I went in with great optimism convinced my research and understanding would help. I came away concluding that if you want to really heal, seeking support from an infectious disease Dr. alone, well - good luck! I was shocked by the close minded nature of the one I went too.. and the provision of horrid mis-information that was TOTALLY COUNTER TO SCIENCE! The Dr. chose to shape what was going on with me in such a way to support her "belief" about lyme and co-infections. It was a CRAZY experience. When she attributed my many symptoms to a brain aneurysm I had, and expected me to buy into that WAY OFF track rationale I "got it". Why those who wisely cautioned me to not get my hopes up seeing the IDD... I get it. You are in the perfect place to seek counsel - coming here. Good luck with your appointment and I truly hope something wonderful rather than discouraging surfaces!
Posted 5/9/2016 8:21 PM (GMT -5)
Run as far away as fast as you can from that ID doc. They are bad news when it comes to lyme and co.

You actually lucked out with your rheumatologist...they're usually not very helpful either.

Welcome! The folks here are wonderful. You'll have wonderful support and you'll learn a lot !
Posted 5/9/2016 8:27 PM (GMT -5)
I agree don't go to an ID doc for several reasons.

They probably wont know as well about ALL the other things you should do to heal other than just actual meds.

Yes actually killing the bacteria is good but abx is only but so helpful and for so long (it can't do all the heavy lifting by itself). There's a many other things you must do for your body to fight infections successfully. A knowledgeable LLMD will know what all those things are specifically for you as everyone is different for countless reasons.
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