Is it Lyme Disease

[Trulordd]

My daughter came to me Wednesday morning and showed me a rash on her back right side.  She said about a week ago she was in the shower and felt what she thought was a scab and pulled it off.  She said see couldn't see it that well cause she didn't have her glasses on ( see pretty blind w/o her glasses). Then she thought it could have been a tick.  She's had a tick bite her about a year ago, so thinking it was that.  Needless to say that is where the rash is.  I took her to the doctor, he said she's not having any other symptoms so he can't test or treat her for Lyme Disease.  He also said its rare in Texas.  So he gave me a cream for dermatitis.  I'm new to forums, I wish there was some way to post pictures of her rash.  I'm just so worried for my daughter shes 13 and very active and it would just break my heart if she'll have to go there this and I or my doctor didn't respond fast enough.   I've read if you treat it early you have a better chance of it clearing up.... Is this true?  Thanks for reading.

[JackieCalifornia]

Hello again -- I just responded to your other post, didn't see this one first.

Very sorry to hear about your father.  Texas is one of those states that takes a 'see no evil' approach:  if the authorities say there is no Lyme in Texas, then There Is No Lyme In Texas.  The politics of Lyme do sometimes overwhelm science and medicine, but there are ways to locate good docs and treatment, tho done verrrry quietly so as not to get the helpful docs in trouble with the medical board.

Here are two initial approaches, and if they don't work for some reason, we'll figure out something else:

1 -- TXLDA is short for Texas Lyme Disease Association.  If you search online for either name, it should take you to their website, with the heartening greeting, "Welcome to the Texas Lyme Disease Association."

2 -- ILADS.org is the URL for International Lyme and Associated Diseases Society.  ILADS (pronounced EYE-lads for short) is the main voluntary group for medical professionals (and perhaps others?) who understand Lyme to be the problem that it is and are on the front lines of getting the word out to other MDs and to patients and the rest of us.  There is good information on their website, but don't get bogged down in the more complex medical aspects unless you are interested in reading at some point.  There is also a referral function on the site, where they will send you the names of MDs near you.  ILADS is an international organization and has member docs in many states in the US.  (My Lyme doc is an ILADS member ... tho he's not my doc now because he knew how to cure me!)

In all cases, we try very hard *NOT* to post MD's names on this site, because in some states, and MD who treats Lyme aggressively (meaning 'effectively') can be in serious trouble with the local and state medical boards whose members think Lyme = the sniffles.

There is a profound split in the medical community about how common Lyme is, where it is found, how serious it is, how to diagnose it, and how to treat it.  In other words:  everything about Lyme is controversial.  That's the reason we don't post docs' names here, but can offer them in private messages through this system if need be.  There are some MDs who are well known in the Lyme field, but we don't name them here in public either, because it could cause posters here to think it's ok to 'out' others here too, when it should be up to the doc and not up to us here.  We can share docs' names through private messages on this system, but we can get into that later.

Sorry for the speech, but Lyme is a controversial area of medicine, and we try very hard to protect our docs so they can continue to help us and others.  

If you don't have any luck checking with ILADS and TXLDA, post back here and we'll try something else.  Your father is fortunate to have you looking out for him.  Let us know how we can help.

[kellibellee]

We think my dad has lyme disease. He has been to doctor after doctor who can't figure out what is wrong with him. We are from texas, do you have any suggestions or referrals regarding lyme disease?

[UnsureMS]

I believe I have lymes and unlike many I remember the rash but I didn't have any other sxs either at first. You should truly try to find someone who will listen to your concerns. It could also be StarI which is almost indentical to lymes. All I know is that I started having severe headaches, dizzy spells, and tingling later. I can't remember what came first the rash or the sxs, but my husband believes my rash came first. And I trust his opinion.

I would hate for your daughter to go through what I have had to. I have had to have so many test done and gone to a few different doctors. This journey has been long. Have you tried ILADS yet. They can help you find a LLMD, and that is who you need to get your duaghter to. Well, may God Bless You,

Kimberly

[mojogal]

I lived in San Antonio where there is no Lyme doctor but there should be one near Houston. I was on a texas Lyme Support Group through Yahoo and I was too sick to drive to a lyme doctor but i remember hearing of some being near you. Like Jackie said, bring the pictures to the Lyme Dr ASAP. Good luck.

[Trulordd]

First of all thanks to all that have posted your comments, y'all have been very helpful.  I just posted a picture of my daughters rash as it looks today.  I believe I see a faint rash there.  It has looked like this for a week now.  I don't know if the steroid cream made it go away faster or not.  I can still see the head or center of it there.  Would my daughter have other symptoms with this rash?  Everytime I ask her how shes feeling...she says she feels fine.  This is why her doctor wouldnt do anything.  I had called him back and told him my feelings about it(how i was worried and i didnt want to wait until it was to late)  he just referred me to a derm doctor.  Needless to say I didnt take my daughter there because the wait time for an appointment was from 3  to 5 weeks.  And now that she doesn't have a visible rash or symptoms, I really dont know what to do.  Whatever Texas doctor I take her to now, they're really going to think I'm nuts!   I just feel so hopeless. :(

[asalka]

Hi,there!!! Is there anyone from UK?? I still can't find a good doctor here..and time is going...my heart is worse and worse,can't walk properly now, fever more than 5 months now...I need any help or advice how to fight ???

[mojogal]

Honestly, ticks are all over the US that can give Lyme. It is false propaganda that some areas don't have it. Lyme is at epidemic rates but mainstream doc won't admit it and many patients are misdiagnosed.

[UnsureMS]

That is crazy. I have lived here all my life I love the Greenbelt, in fact I figure that's where I probably got bite at. I think we should do a poll and see how many people we can find that live in Texas, and has or feels that they have Lyme disease. Maybe then we can take that to the health board.

I mean there has to be something that can been done to help people like trulordd, myself and the others out there that still need a dxs. Trulordd please keep us updated as well.

[houseofallboys]

I lived  in Texas most of my life. I did live in Arkansas for few years as kid.. Funny thing I remember the school nurse found a tick embeded in my head so I was tested for rocky mountain fever which they said came back negative. I also lived in Seattle for about 8 years after HS. I been living back in Texas for about 9 years. My neurological system started going wacky about 3 years ago ... It was right after I had bladder infection that turned into a kidney infection ..

[mojogal]

There are ticks in Texas!

[UnsureMS]

Wow, that is close. So, did you get lymes while in austin?

[houseofallboys]

I saw that you live in Austin I owed a coffee shop in Austin for 7 years. I lived in Kyle Texas for 8 years. I now live in Columbus Texas which about 1 45 mins away from Austin !! Didn't realize we lived so close to each other!

[UnsureMS]

Good morning, I am new to Lyme disease altogether but have been researching alot. I believe her rash looks like the bullseye rash associated with Lyme disease, just as mojogal has stated. I looked up many pictures of it, cause I wanted to see if maybe I remembered having a rash associated with a tick bite. Your daughters looks like some of the pictures.

The other information I found out was that the bullseye rash can take up to 3 weeks to disappear but it will go away. I too live in Texas. I live in Austin, and believe I saw the Lyme rash 4 yrs ago. I never saw a tick, but I know I had the rash.

Take everyone's advice on here they have been very helpful to me already. They truly care and know so much.I have learned alot from them already. May God Bless you and your daughter.

Kimberly

[Ricobord]

This is from a pediatric infectious disease doc:

http://www.familypracticenews.com/news/child-adolescent-medicine/single-article/lyme-disease-avoiding-inappropriate-serologic-testing/147983309876c8e72ca1950ec2245c30.html

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Erythema migrans appears 3-30 days and a median of 11 days after an Ixodes tick bite. It starts as a red macule or papule at the bite site and expands over days to weeks – not hours – eventually reaching a diameter of 5 cm or more, and in some cases as large as 30 cm. Circular or oval-shaped rashes are the most common. Partial clearing in the center, known as a bull’s eye, is common but not required. Up to 10% of patients with erythema migrans will have a small necrotic or vesicular/pustular are in the center of the lesion.

The most helpful features in distinguishing erythema migrans from similar-looking skin lesions are that it’s neither itchy nor painful.
---------------------------

The pictures of your daughter's rash meets this description really well, including the part about up to 10% of patients having a pustular area in the center. I can see the central clearing quite well in at least two of these pics.

The fact that the doc prescribed a steroid cream means he thinks it is an allergic reaction to something, probably an insect bite of some kind. If anything, it will help the Lyme bacteria get even more established by suppressing immune cells in the area that are trying to fight off the invading bugs.

It is critical to treat it now. If you wait for other symptoms, it will be a whole lot harder to treat successfully.

[JackieCalifornia]

I looked up Clobetasol, and it is a steroid cream.  Its function is not to kill any bacteria or other infection, but simply to suppress the immune system's reaction to whatever is causing the rash.

Some docs, when unable to figure out an infectious cause for a condition, will simply default to saying that your immune system is over-reacting to something inconsequential, and therefore just tone down the immune reaction.

This however does not not work, to my nonmedical understanding, in any kind of actual infection .... such as bartonella.  It's like telling the palace guards to take a lunch break when rioters attack the palace.

I'd get another opinion, from a doc who understands Lyme and its co-infections like bartonella etc.

[mojogal]

Not being medically trained, I can only go by my own experience, it looks similar to a Lyme co-infection rash that I have and it looks like the Lyme bulls eye rash to some extent, from what I have seen online.
The Lyme bulls eye rash, I never had it, goes away but my Bartonella rashes don't go with any cream. They are suppose to go away with treatment. Some older ones have faded.
I would get an LLMD to confirm yes or no, to be on the safe side.

[Trulordd]

First of all thanks to all that have commented. I really appreciate all the good info.  Second,  I just learned how to post photos on my profile of my daughters rash.  I hope I did it right, its under album labeled rash.  Maybe everyone could look to see exactly what it looks like.  My daughter says it never was itchy or sore in that area.  I would think if it was some kind of dermatitis, it would at least be itchy.  The gel like cream Clobetasol Propionate Gel is what he gave her to put on it 2X a day.  It looks like its distorting the rash.  I dont know if a Lyme rash would go away with a steroid cream or not.  Thanks again for your info.

[mojogal]

Ditto what Rico said. I was in TX and met a huge group on our support group that got Lyme in Texas.
Get her help fast.

[Ricobord]

Even the IDSA says to ALWAYS give antibiotics for a rash after a tick bite!! Lyme tests would most likely be negative in the month after infection, so he was right not to test.  She could have Anaplasma or another tick borne infection that could be a real problem.

You need to get your daughter antibiotics.  Believe me, you don't want to deal with late stage Lyme. It is a nightmare.

If it will help, find the article about the professor at Texas A & M who recently surveyed ticks from all over the state. She said that 25% of them were positive for Lyme Disease!  Take this article back to your doctor and say, "Things have changed since someone said there's no Lyme in Texas." If he won't give your daughter antibiotics, then go find another one who will.  Make sure they give you four weeks worth. The treatment failure rate for less than that is anywhere from 10-25%.  

Time is of the essence.  I don't mean to be alarmist, so sorry if I come across like that, but I have just been diagnosed with my THIRD tick borne illness, after 11 months of treatment for the first two.  Anything I can do to help prevent this in someone else is worth the emphasis.  Where I got bit by a tick, the "official" position is that there is no Lyme there, either.

[mojogal]

I was in Texas when I got the worst of my Lyme symptoms. Nobody in San Antonio believed in Lyme. Like Jackie said, the Texas medical board has driven many good lyme doctors out.
I joined the yahoo Texas Lyme support group , who can also give you names of a Lyme doctor. Going through ILADS for a referral is a good idea.
Treating sooner is better than later.

[JackieCalifornia]

PS -- I see the system blocked the URL I typed in.  It should be

contact [at] ILADS [dot] org

[JackieCalifornia]

Welcome to MedHelp --

I would have your same concerns.  No one here is medically trained (at least I'm not) but we're happy to share our experiences and understandings about Lyme with you.

Texas is a difficult state to deal with  ... the state medical board is apparently staffed by docs who do not believe Lyme is a serious matter and, as you were told, they believe that Lyme is rare in Texas.  Well, ticks can't read maps, and they are indeed in Texas.  This means you will have to work harder to find competent medical help, but it is important to do so.  We of course can't diagnose anyone, but are very happy to share what we have learned along the way on our own Lyme encounters.

Many of us don't know when we were bitten and never had a rash or saw the tick, so at least you have some clues to go on.  Your doctor is following the Texas medical board approach, but I would not waste any time finding a Lyme specialist for a consultation.  Don't worry that you haven't gotten to a doc fast enough:  your daughter sounds strong and healthy, and that's good.  When I was very ill with what turned out to be Lyme and a co-infection (other, separate diseases the same ticks carry about half the time), after I was diagnosed, I dragged my teenager (under protest:  Mom, I feel fine!) to see my Lyme doc, and she tested positive for the same infections I had.  After she was treated, she said that she could now see how run down and tired she was all the time and had thought it was just overdoing being a teenager. It is true that the sooner you confirm the infection(s), the easier it is to cure, so good for you for not just blowing this off.  

There is a nonprofit Texas Lyme disease association (TXLDA.com), and that would be my first stop.  They may be able to refer you to a doc who treats Lyme+ aggressively.  

-- If that doesn't work,  send an email to ***@**** and tell them where you are ("Dallas area") and/or where you are able to travel to for treatment; ILADS is the main voluntary group for docs who 'believe' in Lyme.  There is no test for a doc to join ILADS, and because Lyme is still a developing field, there are some oddball docs out there who approach treatment in ways that I would not pursue, but overall ILADS is a good organization and has a big website, much of it (but not all) aimed at docs, so you will find lots of good information there, just don't be overwhelmed by it.  

--You can also post here and on other Lyme-oriented website "Need West Texas LLMD" or whatever geographic area you can get to, and see what responses you get.  We do NOT post the names of Lyme docs in public, because of the problem you have in Texas:  overzealous and misinformed medical boards who try to run broadminded docs out of the field.  All rather secretive, unfortunately.  But that's where we are.

It is indeed true that treating early is better, but not necessary.  I was sick for the better part of a year  before I found my way (after 20+ docs) to an LLMD, and I'm fine.  And my kid is fine too.  Lyme is a tricky disease, and its coinfections make it all the stranger, so it's not like anything else I've ever dealt with -- but it is right and necessary to treat aggressively, in my untrained opinion.  I have my life back, and so does my kid.

So don't panic, just get your daughter to a Lyme doc as quickly as you can.  Oh, and the initials LLMD are not a title or a degree, it's just patient slang for 'Lyme-literate MD', meaning a doc of any specialty or none who thinks progressive thoughts and takes aggressive action against Lyme and its co-infections.

Go for it.  And let us know how we can help, and please keep us posted.  We've been where you are.

[nutrinut_bob]

I would have her checked by someone who knows a bit more about Lyme, it certainly isn't rare in Texas and the ticks down there carry other microvermin.