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In tears Im so scared and frustrated

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Lyme Disease
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Posted 7/13/2015 10:16 PM (GMT 0)
I was diagnosed with lyme only last week (on thursday) after seeing the EM rash on my leg. But it was by my dermatologist (and an urgent care doc) and both admitted they didnt know much about treating it so relied on the CDC treatment guidelines online (100mg of doxy 2x/day). The more I learn about lyme though the more that seems to be an inadequate dose even in the early stages. So I started searching for a LLD and have found several all of which either dont return my calls/emails OR the one that just did told me the first possible time they could get me in is in 8-12 WEEKS!!

I just broke down in tears when she told me that. How can I be here, feeling more symptoms daily and have her tell me I have to be sick for 2 months and wait for everything to get worse instead of treating me NOW. Even on their own website it says that time is of the essence when treating Lyme. When I told her that her response was "Well the dr sees patients who have had lyme for decades so 2 months wont kill you". 😳

What should I do? Should I continue with the 100mg dose until I can get in to see someone? Ive read that if the dose is too small it can just make it harder to treat later but I have no idea if thats true. Should I just keep searching for a LLD who has an earlier opening? There arent many in my area but I am willing to travel. I feel like im in this window where if I get early treatment I have a higher chance of it being easier to treat and I am beyond frustrated to not be able to find anyone who will help me!
Posted 7/13/2015 10:20 PM (GMT 0)
So sorry to hear this, JLM! Very frustrating! Try to stay calm and know that we will help you here.

First, it is FANTASTIC that you caught the rash so quickly! You have a great chance of avoiding the problems that often go with undiagnosed lyme. And that both doctors agree you have it and will treat you. Do take the doxy as it is currently prescribed. Better to have some than none.

Second, can you go back with your newly researched information and ask your dermatologist to prescribe more doxy? Explain the situation about the LLMD who says you need more & that time is of the essence but they can't see you for awhile? You will find long waiting lists with many of the more known LLMDs. Maybe if you explain the bigger picture to your derm she can work with you on this.

Last, please post a new thread asking for more recs for LLMDs in your area. Also post the cities you are willing to travel to. You should get lots of responses. Good luck!
Posted 7/13/2015 10:34 PM (GMT 0)
Take a deep breath, JLM. It's going to be okay, really.

First of all, 200 mgs a day is enough to keep the bacteria from replicating - so the infection wont' necessarily spread - but you won't really feel any better either. You could start detoxing heavily to help get your body ready for the toxins that it will be required to deal with, and to clean up your diet too.

Or you could start an herbal protocol while you wait. Buhner's protocols are perfectly safe to use in conjunction with abx.

Keep looking for another LLMD/LLND though - see if you can find one that you feel comfortable with that can get you in sooner. And don't forget to ask about being put on their cancellation list so that you will be called when someone cancels their appt for some reason.

And keep posting here!! We understand the frustration and the very real fear you are experiencing!! And it's much better to vent those frustrations to those that understand this.

It was very unfortunate that the receptionist spoke to you that way. I'd actually like to have a little talk with her about her attitude and flippant manner! devil -but I don't think she or the doc would appreciate it. If it was her or her child, she would completely understand.
Posted 7/13/2015 10:49 PM (GMT 0)
Thank you both! Your kind words really helped talk me down from my panic! Its scary to be sick in the first place, but so much worse when no one will help you. I am going to keep calling some other drs on my list that are farther afield in hopes that someone will either have an appointment or make some room for me. And thank you Traveller for giving me some suggestions of what to do in the meantime. It feels good to have a little plan - even if its just detoxing and getting ready for treatment. It is a huge relief to hear that my current dose of doxy could at least be pausing the spread of the lyme, even if it isn't enough to get rid of it. And Mauihawaii, I will definitely call my dermatologist - maybe she can up my dose of doxy or maybe she can even help wiggle me into see one of these LLDs!
Posted 7/13/2015 10:52 PM (GMT 0)
There you go!!! Now your headed in the right direction!! You can do this!! You are learning to be your own health advocate!! Yeah!! yeah
Posted 7/13/2015 11:17 PM (GMT 0)
Know you're not alone in having to wait. There aren't enough LLDs around for all the people that are sick, so practices are very busy. I do hope you can get on a waiting list to get in sooner to whoever you choose to use. I wish you the best! Let us know how it goes.
Posted 7/14/2015 1:51 AM (GMT 0)
thanks everyone ❤️. I was able to get an appointment for Tomorrow!! woohoo!! Its about a 3 hour drive away, but at least I'll have a chance to speak with a LLD for the first time! You guys are amazing, picking up a stranger when I was feeling pretty darn low. That means a lot. Thank you. So much. 😊
Posted 7/14/2015 2:06 AM (GMT 0)
I'm soooo very happy for you!! That's really wonderful that you can get in so quick.

And you're not really a stranger, you're part of our Lyme family! 😁
Posted 7/14/2015 2:18 AM (GMT 0)
Thanks Traveler...I'm so lucky to have found you all!
Posted 7/14/2015 2:32 AM (GMT 0)
awesome you caught this early and were able to get the appointment with the llmd! that will be huge so hopefully you can really knock this sucker back quickly and have very good dr guidance while you do it. Even if you can get better with just the doxy, knowing what I know now about lyme I'd say better to err on the side of caution and be as thorough as possible.

I wouldn't trust most mds to treat me for lyme, let alone my pet hamster. Frankly I'd imagine that chances are most veterinarians would offer better treatment and clinical dx skills than your standard md in regards to lyme/coinfections/parasites.

Good luck with everything!
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