HealingWell
Search Close Search
☰

Needing answers

Support Forums
>
Lyme Disease
Are my concerns legitimate?
Yes - 92.3% - 12 votes
No - 0.0% - 0 votes
Maybe - 0.0% - 0 votes
Not enough evidence - 0.0% - 0 votes
Doctor is wrong - 7.7% - 1 votes
I am being paranoid - 0.0% - 0 votes
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/8/2015 11:27 PM (GMT 0)
I woke up 4 days ago to a sore, itching ankle. I got out of bed and went into the bathroom to find a black legged tick feeding, engorged but not fully. I suspect the tick had been feeding for 2 days at least. I removed the tick and cleaned the bite. The area was very sore and red around it as I would expect. I was slightly worried, as I have had many ticks on me and never had the bite present like this one. I went about my day, and was hoping by the next day that the redness would have dissipated. When I woke up the next day I checked it, and I had a very thin red circle around the bite, my leg still sore. I went to the ER here in Maine, and was given doxycyline 2 pills to take once. Now 2 days later the redness is deeper, and the ring is thicker and only slightly pink around the outside of the ring. When I woke up this morning I had blood in my nose, though I am unsure if this is at all related to the tick bite. I dont feel well, my ears and nose feel congested. I feel like there is pressure in my face, and have had headaches off and on for the past 2 days. I called my doctor as I was told to do by the ER, and she said that they cannot do anything for me because it is far to early to be experiencing any symptoms, it must be the antibiotic. She also told me that a test would be negative and that I must wait, and if i experience any symptoms in 3-4 weeks from now then she would see me. I feel completely uncomfortable with this answer, and I live in an area prone to lyme disease, and am a single mother. I would prefer not to wait until it worsens. But the doctors in this area seem fairly ignorant. Can anyone help me out, and let me know if my worries are legitimate and what I should do if anything? smhair
Posted 6/9/2015 1:11 AM (GMT 0)
Hi SNC86 - welcome to the forum!
Yes, your worries are legitimate. You should look for a LLMD and schedule an appointment a.s.a.p.
I'm sorry that the Dr. isn't willing to give you more doxycycline.

Unfortunately two pills of doxy won't treat lyme disease effectively.
Can you try another Dr.?

What you need is 200 mg twice a day of doxycycline until no symptoms or signs - plus 4-8 weeks.

If you could get a few weeks worth, maybe it could hold you over until you get to a LLMD to get more
treatment.

My advice would be to find Lyme Literate MD and schedule an appointment....if you can't get in within a few weeks, see if they have a waitlist for cancellations.

The good news is you have acted right away - we just now need to get the Dr.'s on board.

We can help you find a LLMD - start a new thread titled: "Looking for LLMD in/near__________" and fill in the blank.
Posted 6/9/2015 2:03 AM (GMT 0)
Your concerns is legitimate. I would say see another doctor and keep seeing a doctor until you get your abx. Bullseye is definitely lyme and there is no way 2 pills of doxy is enough to prevent infection.

Bullseye rash is a definite sign of lyme. No testing is necessary. Maybe ask for ceftin as that one is better for early lyme than doxy. But you could have co-infections which is why doxy is generally the better choice... But specifically for lyme I would go with ceftin.

Tell them you just want preventative abx to be safe if they refuse you. Because once you start getting lyme specific symptoms it's a whole different ball game and your treatment time goes for months and months rather than maybe just 1 month. Your other symptoms may actually have been from the abx killing other bacteria... But the bullseye rash is a bullseye rash and means you have lyme. A bullseye rash is a signature sign of Borrelia.
Posted 6/9/2015 4:01 AM (GMT 0)
SNC86,

I would not ignore the Bulls eye and symotoms you're having. Unfortunately, most doctors are not well informed regarding Lyme. You should find another doctor willing to prescribe antibiotics.

In the meantime, you should also set up an appointment with an LLMD. It's better to stay on top of this.

Keep fighting!
Posted 6/9/2015 11:48 AM (GMT 0)
Thank you all for the responses. My doctor made me feel like a complete idiot.
Waking up this morning I know I am not feeling better, just generally achy all over and very tired. The red ring or start of a bullseye is still the same as it was yesterday, with bruising/blackish color where the tick was detatched.
I live in downeast Maine, and surrouding towns that are close by are Ellsworth, Bangor, Brewer. I am hoping to find a doctor today that will give me the antibiotics needed to wipe this out. I have never had a problem with headaches, and they keep coming and going. My poor misinformed doctor who does not have to pay the consequences of waiting this all out said that the red ring was bruising and normal with an insect bite. I really hope that today I can call and find a doctor willing to help me, before I get worse. I have looked at what happens in the later stages of Lyme disease, and it is scary. I have a little girl and I do not want to get to that point.
Posted 6/9/2015 12:03 PM (GMT 0)
~SNC.. Hi there...

Sorry that you are here...but glad that you found us!

This is the most supportive environment that i have found...
and i have been all over the place!

Ok... it was suggested above that you start a new thread...
looking for LLMD in your area ... (name your general area)

You also need to enable your e-mail... because doctors names
are not allowed in a post...but can be sent via email.

This is important... because someone in your area may come in
here and see your post...and may be able to direct you to a valuable resource.

It is definitely worth doing...
Posted 6/9/2015 12:20 PM (GMT 0)
Is fullness feeling in the ears and a foggy feeling in my head something that is a normal symptom of lyme?
What do I tell my doctor this morning, to go pound sand? and that I want a referral...NO idea how to do all of this.

Post Edited (SNC86NeedsAnswers) : 6/9/2015 9:07:48 AM (GMT-6)

Posted 6/9/2015 12:44 PM (GMT 0)
I know... i had no idea either.

It is so tough to know which is the best route... one would think that since you
have what seems like... the classic bullseye rash... that you would get the proper
treatment... but because of the political mess surrounding this... its just a darn
shame.

Ok... i will respond with... "If it were me with your symptoms"
I would stumble...yes stumble into the ER... and act as if i were ready to faint...
i would act extremely exhausted and barely able to speak as well.

This may be considered lying to some... but then... the doctors are lying...
the politians are lying... while we are just trying to survive! I would fight
fire with fire... and pretend to be a weak little puppy while doing it.

*And i would not regret one moment of it...if it got me the meds that i need
to prevent further damage.

That's just me... i will not tell someone else what to do... i will just say...
about anything that i share "IF it don't apply...Let it fly"

I have to go for now...but will be back later tonight... i wish you strength and faith to get what you need to take care of you.
Posted 6/9/2015 2:44 PM (GMT 0)
I just called and left a message for my doctor. I told them that either she can treat me properly , because I am not comfortable with waiting 30 days just to satisfy her protocol, or she can refer me to a doctor that is willing to help treat me preventatively and that knows what they are doing. I am now waiting on a phone call back. I took a warm shower hoping maybe it would help me feel better, and "wake up". It just made me feel worse. No changes other than a headache in the top of my head right now. Once again would like to thank everyone who is replying and helping ease my concerns, although my doctor should have been doing this from the start. Thank you all once again, and hopefully they will put me on a full cycle of abx, and give me some needed answers. I may be being far too paranoid, but I already have the start of a EM rash that is not going away with the doxycycline oral 200mg and progressing symptoms. I would rather be safe than sorry at this point.
Posted 6/9/2015 2:58 PM (GMT 0)
SNC86 - please remove your email from your post. You will get spammed from non-forum members.

You can enable your email in your profile - only forum members can then send you an email by clicking on the blue envelope below your name.

So, to enable your email - go to "My Profile" (blue bar upper left), then Click on "Edit Profile", then scroll down a bit and select "Show my email"...than scroll to the bottom and click on "submit" to save your changes.

Don't stop fighting - even if it means going to several Docs in the next few days...you need antibiotics now.
Posted 6/9/2015 3:10 PM (GMT 0)
Sorry about that Girlie, I removed my email and changed it like you suggested. Thank you for letting me know!
I am trying to get the treatment I need, part of me is hoping that the rash is just a rash and that it really isnt lyme disease, really dont want to believe that one little tick can cause all of this. And this is just the early stages/beginning if I do have lyme disease. If I dont get a call back in the next hour I will be going to the ER again, as there is no way to get in with any of the doctors up here they have no openings.
Posted 6/9/2015 5:31 PM (GMT 0)
Hi SNC,
Welcome to our community. I'm glad you found us!!

Please take a picture of your rash with a coin or a ruler in the picture for help in understanding the size. A doctor that is trained properly will use that as enough for a diagnosis, as Lyme is the only thing that creates a bull's eye rash.

​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.​

Arguing with your Primary care doc won't likely get you the treatment you need, it would be much better to find a specialist.

For information on Lyme Literate doctors (known as LLMD's or LLND's) that have been specially trained for treating these infections, 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 and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org/​​ to learn more about these infections.


You can also 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​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) 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 Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​
Posted 6/9/2015 7:34 PM (GMT 0)
You can request doctors' names from ILADS

http://ilads.org/ilads_media/physician-referral/
Posted 6/9/2015 9:39 PM (GMT 0)
Well I have now made an appointment with another doctor here in Ellsworth, Maine, to be seen tomorrow morning. I am hoping that they will see the red circle (which has not expanded past the singular bright red ring) and say, "Gee, perhaps we ought to treat you!"

I also visited the websites that you all so kindly provided me, and unfortunately there are only about 4 LLMD in Maine that I am seeing on the referral list. All of which are over 2 hours from me. So I am hoping that the appointment tomorrow goes well, and I get the antibiotics that I would assume I need.

If I have not tested positive for Lyme Disease then I do not have it correct? I am on a preventative course?
Or is the EM Rash a 100% indicator of the Lyme disease?

Sorry for all the questions. I did read the "new to the forum" thread and found that helpful.
Posted 6/9/2015 11:44 PM (GMT 0)
~SNC

Don't worry about asking questions... that's what we all do... ask away!

*you can test negative and still have it... it depends on alot of factors that
I'm not equipped to answer... it is very likely someone will come along and
give you details on that.

*i have brain fog and trouble even spelling these days... but i can still
try to be supportive... while you are waiting for the right answers.
Posted 6/10/2015 11:09 AM (GMT 0)
SNC - a confirmed EM rash = Lyme. Your blood tests may come back negative, but you still have it.

You will take the antibiocts to kill the initial infection and stop the infection spreading - spreading (disseminating) makes the disease harder to irradicate.

Ask lots of questions- it's horribly confusing but the good folks here will see you right.
Posted 6/10/2015 11:17 AM (GMT 0)
Thank you ALL; Silly sheep, Bellyfull, Traveler, Lymiegirl, Lyme pickle, Girlie and Sarahm620.
I will let you all know how my doctors appointment goes today. Hopefully no terribly bad news.
Posted 6/10/2015 11:23 AM (GMT 0)
May the force be with you!

Post Edited (Bellyfull) : 6/10/2015 5:26:33 AM (GMT-6)

✚ New Topic ✚ Reply