Misdiagnosis? Possibly Lyme Disease?

Hello everyone! I've browsed the forum a bit and I want to share what is going on with me to get your expert feedback

I'm in Southern Ohio. Live in a subdivision (so not in the woods). I stumbled across some info which leads me to believe I may have been misdiagnosed back in March.

On March 23rd, had my mom over for dinner and I walk her to car after dark. I had just had a new tree planted in our flower bed and I walked over to check the leaves (we had just had a frost the night before). I go back inside. Fast forward an hour and as I was laying in bed, my right leg started itching like crazy. Then my elbows. Then just below my waistline. I take a look and they appear to be swelling white bug bites. Then suddenly my right middle finger between the 2nd and 3rd knuckle starts to swell on the palm side. At this point I freak out, strip my bed and jump in the shower. I get out, search the bed with a flashlight (thinking bed bugs - son is in daycare -- it's possible I guess). I find nothing. I go to sleep.

Wake up the next day and the spots on my leg/waistline are better. Elbows are still badly swollen where the "bites" were the night before. Almost like knots. Throughout the day a total of 7 of 10 fingers swell. Including a spot on the top of my left hand. All of these are now red. I take Benadryl all day. It seems to help.

Saturday, things are getting better. By end of the day, my hands are back to normal. As well as the swelling on my elbows. At this point, I'm thinking I got bit by a bug/spider while I was outside touching the tree maybe.

I wake up Sunday morning and my top lip is swollen and I have a huge raised red oval spot on my left thigh (picture below). It's hot to the touch and tender. I go to Urgent Care and they diagnose me with hives and angioedema. Put me on a steroid. I take it and Benadryl all day Sunday and Monday.

By Tuesday, my lip and left thigh are back to normal. However, I now have what appears to be a bullseye type of rash on the outside of my upper right arm (picture below). It was red, hot to the touch and about the size of a quarter. It did not expand or get bigger in any way. I continue taking the steroid and benadryl. It eventually goes away, but over the next couple weeks into April, as soon as one spot on my arm goes away, another pops up. Within a couple weeks they are gone completely. They would go from red to brown as they faded away. I never get another "bullseye" spot.

Fast forward to May 29th, I get a bright red "streaking" type of rash on the right side of my torso, above the hip (picture below). Doesn't get any larger and is gone in less than a week with Benadryl.

June 1st - red solid bug bite, again on outside of upper right arm (no bullseye this time). Goes away on it's own. (picture below)

Nothing at all since June 1st.

So, I start thinking back to before the "hives" night of terror. about two weeks before that, I had two bullseye type of bites (didn't get larger either and went away on their own). One on outside of my upper right arm and one on the back of my right shoulder. They faded to brown as well and were itchy/scaly once brown.

So, my question....does any of this sound like Lyme Disease? Or just an allergic reaction to something? Do bullseye "rashes" necessarily mean Lyme? I never saw or found a tick (and I searched my bed with a flashlight). Also, my bullseyes never got larger. They stayed the same size.

I've also not experienced any other symptoms. No fatigue, headaches, neck stiffness, muscle/join swelling/aching...nothing.

Thank you all for reading and for any info you can provide!

Below are pictures of all of this:

Leg Rash
VIEW IMAGE

Bullseye?
VIEW IMAGE

Arm bite
VIEW IMAGE

Right torso rash
VIEW IMAGE

Post Edited (doowain) : 6/29/2017 8:59:16 PM (GMT-6)

That is correct. No other symptoms that I know of.

I've read that hives can be a symptom (which I definitely had).

I probably should not tell this story but here goes. A friend of mine got bit by something. She did not see what it was. She got a bull's eye rash and not symptoms.

I told her to go to the doc and tell him that she pulled a tick off of her and show him the bull's eye. He then treated her.

I don't think he would have treated her with just the bull's eye. Anyway, she got doxy for 6 weeks and never got any symptoms.

You got bug bites and a bulls eye rash. Treat it.

The treatment for 'just' a bulls eye rash is to treat until sign and symptom free for 4 weeks with a minimum of 6 weeks treatment.

Here are the guidelines to check - scroll down to page 19 to see.

www.lymenet.org/BurrGuide200810.pdf

Page 18 and 19 show the dosages of medications. Doxy is still used for this stage.

Don't take any chances of this going chronic.

I'm finding it difficult to locate a LLMD in my area. Does anyone have any resources to find such a doctor? I submitted a request to ILADS for a referral but the email said it may take up to 3 days for them to respond.

Thanks!

Hi Doowain,
Welcome to our community! I'm so glad you found us.

If you haven't yet, please do read through our "new to Lyme" thread that sits at the top of the forum as it's packed with a lot of helpful information.

Be sure that you get enough Doxy to treat effectively - that's 200 mgs of Doxy twice a day (400 mgs daily) for a minimum of 6 - 8 weeks. Many PCP's don't like to prescribe so much, but it's vital to get a high enough dose for long enough to be able to keep this from turning into a chronic infection.

Thank you everyone for the responses!

Called my local LLMD and new patient appointments are out to mid-August. Obviously don't want to wait that long. I guess I'm waiting to hear back from my family doctor. Hopeful that he will call in the doxy.

Also left a message with the Urgent Care I originally visited. Maybe they can do the same.

If it makes a difference, something I remember about my "bullseyes". They were raised, warm, did not expand and would itch. I also had multiple bullseyes over the course of 2-3 weeks (none since mid April).

Everything I'm reading says that erythema migrans is flat, expands and doesn't itch. Does anyone know if this is always the case?

Waiting on the call back from the doc is not fun.

They are in the original post.

Just spoke to the Urgent Care that originally saw me. She said "we are happy to see you but unless you currently have a rash we cannot prescribe anything. Call us back if/when you have another flare up."

Told her I had pictures from when it happened. Didn't matter.

Let her know that this is why so many cases of Lyme Disease are misdiagnosed and not caught until it's too late. Ridiculous.

Have an appt with my family doctor this afternoon. Hopeful that I can get him to prescribe doxy even without a current rash.

Gave him the full rundown. Showed him all the pictures.

Doc ordered the test for Lyme. He said he doesn't believe that's what it is though. He said over 30+ years he's seen hives present with bullseye rashes before. And the way my issues progressed, leads him to believe it was just hives.

Honoring my request, he ordered the doxy as well. He said that if it were his son, he'd tell him not to take the doxy until after the test results.

PeteZa said...

Girlie said...

PeteZa said...
I probably should not tell this story but here goes. A friend of mine got bit by something. She did not see what it was. She got a bull's eye rash and not symptoms.

I just want to clarify - the bull's eye rash IS a symptom...so your friend did have a symptom.

Her doctor did not see it as a symptom. It was just a bug bit to him. In order for him to think otherwise, you have to say you saw the tick. I knew this because someone else had gone to him with a bull's eye. The doc wanted to wait for symptoms.... urgh!!!

doowain, what state are you in? Here is a list where you can look up your state. But, I have no personal references for any of these. The best thing to do is start a new thread stating -- Looking for LLMD in _____. Other members can give you their personal references that way. You will need to enable your email (My Profile, Edit Profile) so they can email you doctors names. We don't put doctors' names on this forum.

/sites.google.com/site/lymedoctors/home

" She got a bull's eye rash and not symptoms. " Because those were your words - I just wanted to make sure it's understood that the EM IS indeed a symptom. That's all.

100 mg once daily? yikes - that's way too low.

It needs to be 200 mg twice daily.

And...(see my other post with a link to the guidelines)

'just' a bulls eye rash is to treat until sign and symptom free for 4 weeks with a minimum of 6 weeks treatment.

Can you go to another Dr. - a walk-in clinic...or? and get another prescription?

re: tests. With a bullseye rash - you don't need testing. It is a sign of lyme disease - you need to treat.

And the point of testing for many of us - we didn't see a tick on us...or a bullseye rash...so yes - many false negatives - that don't tell us anything...but if we get a positive...then it's useful.