Does a bullseye rash like mine always indicate that Lyme Disease is present?

[notfromtheus]

Hi everyone!

I'm not from the US and just noticed a very weird bullseye rash on my left leg.

That immediately made me suspicious about the fact that I might have been bitten by a tick.

The strange thing is that lately, while I did indeed travel a lot, I wasn't involved in outdoor activities.

In a normal country like the US, you could just go see a doctor but over here, you can't put much faith in their diagnosis for things like Lyme Disease.

Given the fact that Lyme Disease is particularly hard to diagnose in general with the tests being inaccurate a lot, the chances of obtaining a clear diagnosis in my country are slim to none.

Therefore, I have to self-diagnose through the Internet. Not the best situation you could be in but I hope you can help.

I took 7 pictures of the rash on my left leg, here they are:

http://s2.postimg.org/y7zit34p5/2013_08_06_12_31_02.jpg
http://s11.postimg.org/l3r0s4wn7/2013_08_06_12_31_54.jpg
http://s7.postimg.org/7ieqz6y8r/2013_08_06_16_51_30.jpg
http://s9.postimg.org/da0ra7p8f/2013_08_06_16_52_28.jpg
http://s8.postimg.org/aj906zcd1/2013_08_06_16_52_20.jpg
http://s17.postimg.org/k5v200zcf/2013_08_06_16_52_05.jpg
http://s9.postimg.org/4kcv0umin/2013_08_06_12_31_12.jpg

My rash did itch, especially during the first days, not sure if that helps or not.

Some sources say a Lyme Disease rash may or may not itch, some sources say it never itches.

It appeared about a week ago and wasn't accompanied by fever or other symptoms.

I do have a sore throat, had it for a good while (probably over a week before the rash appeared) but the manifestation was so mild that I didn't pay much attention to it. Still have that sore throat now and maybe a mild case of runny nose that manifests itself once a day.

No fever, no headache.

Could the bullseye rash have been caused by something else?

On the Internet, almost everyone says that if the bullseye rash is present, it tells you that you definitely have Lyme Disease.

What do you think about my rash based on the pics I posted?

Thank you in advance, hopefully your experience will help me.

[JackieCalifornia]

Welcome to MedHelp Lyme --

No one here is medically trained as far as I know, but given that Lyme disease has spread through much of the country, it might be a good idea to be tested.  Lyme is a persistent bacterial infection that can lay low in your body for quite a while, and then begin to make mischief especially is your immune system is under stress from (another) infection.  To my understanding, Lyme does not go away by itself.

To be on the safe side, you might consider seeing a Lyme specialist for a consultation, tell the doc your history, and get tested.  Try not to worry, but since Lyme doesn't go away by itself, and could cause problems in the future.  Good for you for thinking of this!

There are two camps in the Lyme doc category:  one camp says Lyme is no big deal, and once the rash is gone, then you are okay.  The other camp says that Lyme hides in places in the body where the immune system cannot reach (in cartilage, for example), and can lie low for a very long time, then suddenly come out when the immune system is challenged, perhaps by another ailment altogether.

Lyme seems to be quite widespread these day, tho many docs still think it is rare and hard to get.  I had Lyme and another infection the 'Lyme' bugs often carry, and it was truly misery.  Took about a year to get over it, and that was with treatment.

Don't be afraid, but do be cautious, and your post indicates that you are cautious.  Let us know how we can help, okay?  There are way to find good Lyme docs and we can share that with you.  (PS the quirk in having Lyme is that the medical community is split as to how serious it is or not.  Having had it myself, I would take it very seriously.)  We don't post Lyme docs' names here in the open, because the docs who don't 'believe' in Lyme like to try to cause problems for the docs who do believe.  It's a quirk in medicine that will eventually work itself out, but probably not this week.  ;)

Best wishes -- let us know what you do and how it goes, okay?

[chlo34]

About two years ago I went for a bike ride in the woods. The following day, a massive bulls eye rash appeared on my arm (about 10 cm diameter) which lasted a couple of days. The ring increased in size over time to about 16 cm diameter as it began to fade.

I dismissed this as a spiders or horsefly bite but now having read these posts I'm a bit concerned that I should have gone to the doctors?

Do you think this could be an indicator of Lyme disease?

[cave76]

To repeat what Rico and people on another forum said:

" Being part of a study is definitely not the way to get the best lyme treatment."

"See where [Burrasacno] says that undertreated lyme will INEVITABLY resurface."

"100mg bid of doxy is barely sufficient for early stage Lyme..."

All good advice.
Plus:

"I really encourage you to do what it takes to get another 2 weeks worth."

Me talking---- I would get more than another 2 weeks worth and stronger tablets.

There's nothing like experience ----- and you're hearing from experienced  people.

[Ricobord]

Two weeks and 2 days of antibiotics is NOT enough to treat early Lyme Disease, especially if your rash is still there. The rash should be resolved before treatment ends.  Three weeks is the standard treatment in the U.S., but it is controversial.  Doctors who treat late stage Lyme estimate that 3 weeks has a 10-25% failure rate. ILADS recommends longer.  I've heard of people getting 6 weeks for a rash, 4 weeks for a tick bite, but I'm not a doctor and those aren't official recommendations.

I really encourage you to do what it takes to get another 2 weeks worth.

[cave76]

"Is the time it takes for the rash to completely disappear relevant for my Lyme diagnosis and treatment or is it something more related to my skin than to Lyme Disease at this point? "

It's related to a crap shoot!  LOL Sometimes it lasts a long time, sometimes not.  And in some cases, it disappears then reappears later on another part of the body.

The rash, as the only visible sign of your illness is naturally a focal point, but is not important at this point. (It WAS important in that it proved you have Lyme and it was what qualified you for that study.)

But the really important thing right now is to line up just how and where you're going to be able to get more doxycycline.
I understand that you may want to follow that study's requirements, even though the dosage is far too little. But that's water under the bridge at this point.

How much longer will you have to be in that study?

In some parts of the world people can get doxycycline without a prescription. Is that a possibility where you live? (I sort of doubt it, but have to ask)

You said:
" best solution would probably be asking my doctor for a dose increase. "

Excellent! I hope s/he will. Do you think that showing him the ILADS guidelines would help? Or just antagonize.

[mojogal]

Its a good question. I never had the rash so I don't know but I would guess it doesn't have much to do with it because I became very ill without having it at all.

[notfromtheus]

Unfortunately, I don't think there are clinics that specialize in Lyme Disease nearby. Germany would be an option but it's very far away and the best solution would probably be asking my doctor for a dose increase.

I forgot to ask, how long did it take for the Lyme rash to go away in your case?

In my case, I've been on antibiotics for 2 weeks and 2 days but it hasn't gone away completely. Compared to how it was, it's a huge improvement but if you look hard enough, you can still see a vague bullseye. In the very center, a crust was formed and while I can conclude that the rash is almost gone, it's not  100% gone yet.

Is the time it takes for the rash to completely disappear relevant for my Lyme diagnosis and treatment or is it something more related to my skin than to Lyme Disease at this point?

I asked my doctor how long it took for the rash to go away with other patients and she said that in some case, it resolved very fast and in other cases, it took several days.

What do you think about the fact that my rash hasn't disappeared 100% yet after 2 weeks and 2 days of antibiotics? Don't get me wrong, it's almost gone but not 100% gone.

[cave76]

Have you seen the reference to a Lyme clinic in Germany on this thread?
[scroll  down to the last reply]

http://www.medhelp.org/posts/Lyme-Disease/BCA-Clinic-in-Germany-VS-US-Doctorss/show/1667199

Just a thought.

[mojogal]

From your test results, I would say it is Lyme too. Our CDC does not believe in chronic Lyme so we are really not treated well, I think things are slowly changing but when I was first bitten 20+ years, Lyme was on nobody's mind so I was not treated. Now I am very ill, mostly neurologically and it frustrates me that it could have been avoided if I was treated right after I was bitten.

[cave76]

Thanks for that image. And you've managed to hit my Achilles Heel---- the tests and what they mean. (grin)

I became less than enthralled with WB test results after discovering that, for Lyme in particular, they're less than useless. So I stopped researching them thoroughly a long time ago.

Don't get me wrong---- our doctors (because of our insurance companies and from an ethical standpoint) need to show that we actually have an infection before treating or reimbursing for it's treatment. From that standpoint----- VERY useful and necessary.

However, we all know that our 'good llmds' will treat on clinical presentation with or without a positive. (That was my personal experience, as it is for many others.)

The IgG and the IgM conundrum----- really messed up for Lyme. :(

Guidance for a WB------ from me? :) Perhaps Rico can do the job that I'm not good at. But bottom line? my guidance is------ you have Lyme disease. Treat for it. And treat it for as long as you can at at dosages recommended by the ILADS Guidelines. :)

I hope you understand that I was being a bit frivolous by my 'guidance' offered. I'm not trying to discourage you from getting all the information you can----- we need lots and lots of that here. And I appreciate you sending that.

I did see that B. spielmanii was mentioned.  Ísn't that sort of the new kid on the block?

[notfromtheus]

Fortunately, I have a copy of my test results. Will try to research extensively, hopefully you will be able to help with some guidance.

Here are the results, I uploaded them:

http://s23.postimg.org/i531bzxnv/western.png

The IgM results at the top of the image and the IgG results are at the bottom of the image. The text is in Romanian (I'm from Romania) but only 4 phrases needed to be translated (I translated them, the blue text was added by me) and the rest is just medical terminology which is universal (I hope).

[cave76]

"If caught early, Lyme is easily treated with antibiotics. But activists, and many researchers, have long contended that tens of thousands of people remain unaware that they have been infected—sometimes for years, during which the bacterium can spread to the heart, nervous system, and brain."

http://www.newyorker.com/online/blogs/elements/2013/08/an-update-from-the-frontline-of-the-lyme-wars.html

My opinion------ undertreated means untreated.

"If caught early, Lyme is easily treated with antibiotics"

Fact--- not my opinion but fact. Playing with words the IDSA has insured that they can't be sued for úndertreatment.

What they have neglected to define is---- what is 'early'?

Here is just one fact:
"When treatment was delayed until 24 h after tick removal, only 47% of mice were protected; prophylactic treatment was totally ineffective when delivered ≥2 days after tick removal."

http://www.sciencedirect.com/science/article/pii/S1877959X1200012X

O.K---- a mouse model. Who will take the chance that a human body won't behave as well?

[cave76]

1) No the Western Blot isn't conclusive. Especially for Lyme. I have some articles that discuss that but don't want to 'clutter' up this reply but I can give them if requested.

2) Yes, you can have Lyme for years, decades before exhibiting symptoms. Asymptomatic Lyme disease is not common but it does happen.

3) It's not for us to tell you what treatments should be done. (There, that's my formal disclaimer) All I can say is that if it were me AND had had a bulls-eye rash I would without a doubt take more antibiotics and at the doses recommended by the ILADS Guidelines.

http://www.ilads.org/files/ILADS_Guidelines.pdf
[It's a large file so be patient]

4) Yes it CAN stay in the body asymptomatically forever. Whether or not your immune system (body) will keep it asymptomatic forever is a crap shoot. It may. It may not.

Since you were admitted to a study---- and all studies have to have exclusion and inclusion criteria----- I have to say that that study admitted you on the sole basis of your bulls-eye rash. I have to think that if it was proof enough for them then it would be proof enough for me that I had been infected with Lyme disease.

I have to say, respectfully, that their treatment is not what I would want for myself, knowing what I know now about Lyme. A too small dose will just kill off the weakest bacteria and leave the strong to hide and come out later. (That's a bit over-simplified but gets the point across. That's why the best Lyme specialists here start with a very high dose and continue it for a long time.)

[notfromtheus]

I'm from Romania and the tests were performed at the center for infectious diseases as a part of a study they're involved with, sponsored by an institution from Holland.

Unfortunately, Lyme Disease doesn't receive much attention in my country. In fact, I'd say most people just dismiss rashes like the one I had.

[mojogal]

We're these tests done at IgeneX labs or mainstream? That would make a big difference.

I was bit over 20 years ago. I remember being sick through the years but it wasn't until 2 years ago that the symptoms became debilitating .

I have heard where the immune symptom can hide things and as in my case something devastating happened and that caused everything to come out big time. So yes, you could have been bitten years ago. It may be "hiding" inside you.

An LLMD would be the best one to determine your treatment.

[notfromtheus]

After 2 weeks, I went for another round of tests (they drew 8 small bottles of blood... yikes) and have the results from the first round of tests.

They are kind of confusing.

They performed the ELISA test as well as the Western Blot.

With the ELISA test, IgG as well as IgM came back negative.

But with the Western Blot, IgG came back positive and IgM came back negative.

Based on my understanding, a positive IgG means that in the past, I was exposed to Lyme.

And a negative IgM means that according to the Western Blot test, I do not have an active infection (either that or I have another Lyme infection, aside from the one or ones indicated by the positive IgG reading, but no antibodies are showing for it yet given the fact that it's recent).

There are a few things I am not certain of:

1) Is the Western Blot conclusive? Based on what I read, the general recommendation is that if the ELISA test is negative, a Western Blot should not be performed. That leads me to believe that the Western Blot is more of a way to check whether or not the ELISA test gave a false positive.

But in my case, the exact opposite happened. The ELISA came back negative, yet the Western Blot test indicated that IgG came back positive.

2) Could I have been exposed to Lyme in the past without having symptoms? If the IgG reading of the Western Blot is accurate, that seems to be the conclusion. The weird thing is I don't recall any Lyme symptoms, the rash is basically the only Lyme symptom I ever had.

3) Do these test results mean that I should receive more aggressive treatment?

4) Assuming that I have indeed been exposed to Lyme in the past, is it still in my body or is it possible that my immune system got rid of it back then without antibiotics?

Sorry for all these questions and thanks again for everything!

[cave76]

Curious----- did your husband start taking abx within a week or so of getting bitten?

He may have been one of the lucky ones------ and my sincere wishes that he is still well 10 years, 20 years from now. Actually for as long as he lives. :)

[gibsongal]

you are in a clinical study? very interesting.
my husbands rash grew to almost  the size of a hand.
it was itchy and he had the fever and flue symptoms.

1 month doxy and he was well... and 2 years later he is still fine and well.

[Ricobord]

I'm a little late to the discussion, but I'm really glad you got doxycycline.  I am concerned that your dose is a bit low, though.  I've heard from other patients of ILADS docs that they got 300mg for 4 weeks for a bulls eye rash.

Borrelia is the ONLY thing that causes an erythema migrans (a growing rash) or a bulls eye rash, but sometimes, another insect bite rash or even ringworm is confused for an erythema migrans or vice versa.  

Your bullseye is rather small for Lyme Disease.  Did it grow more after the picture?  Erythema migrans, by definition, spreads out.  I seem to recall that 5cm is the official minimum size in the U.S., but I'm sure there are Lyme patients out there who will swear they had a smaller one.   I don't know where you are, but perhaps smaller rashes are more common with whatever species/strain you have.  You just can't transfer assumptions/beliefs about Lyme Disease from the U.S. to other places.  Nearly all the research here in the U.S. has been done on New England Lyme-acquired patients.

Do you mind telling us where you are?  I think you were wise to pursue the issue of your rash. You could very well have saved your own life by getting Doxycycline!

[cave76]

I see you've received many replies on another forum  (rules here keep me from posting the name of that forum).

The ones posted by a person named Keebler are the ones to pay the most  attention to but most of them seemed on the right track.

Have you researched the reasons why a longer term of abx is preferable yet?

All of us on the forums are not doctors----- but the combined knowledge of the best people is considerable. Mostly because of the School of Hard Knocks and just hate to see anyone else go through the misery that many  of us have just for lack of a few antibiotics!

Keep  in touch, please?

[cave76]

Here's one of the references to how fast CNS involvement can occur after a tick bite:

"Neurologic involvement occurs 1–4 weeks after the initial infection (Pachner et al., 2001b)"

  Fallon, B.A., et al., Inflammation and central nervous system Lyme disease, Neurobiol. Dis. (2009), doi:10.1016/j.
nbd.2009.11.016

As you can see that 'imaginary line' is there and it does waver back and forth a bit between people bitten by an infected tick.

(I can't find the full text yet --- hidden behind a paywall. I'll keep trying)

[mojogal]

So glad you got into the study.

Sometimes the dose you got of doxy will work for the newly bitten.

In my case, with long term Lyme I had double the dose.

Best of luck.

[cave76]

"So 200mg of doxycyclin daily for 21 days.

Based on your experience, do you think the dosage and the choice of antibiotic is ok?"

Well, yes and no. :)

Doxy is almost always the first drug given because it also addresses the  Ehrlichia co-infection. So that part is good.

The dosage and amount of time:

Yes, if you were bitten less than two weeks ago. You seem to be right on the cusp of that imaginary line of what is just-bitten and a little too late to be called just-bitten.

That's my imaginary line based on reading hundreds of articles and patient stories. Plus the personal knowledge that I've received from llmds that an antibiotic taken as soon as tick-bitten is what they do for themselves, friends and family.

Your first post on Aug 6 said you noticed it the end of July---- so the protocol might be long enough.

Mouse models of transmission show that CNS involvement is VERY fast. I'll have to see if I can find that article.

You'll notice all the if's and mights-----which show that there's nothing written in stone about this.

The good news is that you're young, healthy and male. That's all in your favor and the prognosis is probably very good for you.

If you don't mind, could you tell me the name of the study, it's number, if you know it, anything that can help me locate it to see who is sponsoring the study?

And the best of luck to you. Lucky you got into that study.

[notfromtheus]

First of all, thanks a lot for the replies.

Based on my research and on the feedback I received, it ended up being clear to me that what I have is indeed Lyme Disease.

So first thing in the morning, I went to a larger city to ask about the rash. I chose that city because I have more confidence in the ability of the doctors over there to handle this problem.

It turns out that there's actually a study about Lyme Disease going on right now and I was included in that study.

They drew lots and lots of blood (6 little bottles, probably to test whether I already had Lyme Disease, so just in case I didn't have it from this specific bite) and the doctor told me to take doxycyclin 100mg twice/day, once every 12 hours.

So 200mg of doxycyclin daily for 21 days.

Based on your experience, do you think the dosage and the choice of antibiotic is ok?