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tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 12:12 PM (GMT -6)   
Hi, I think I just recieved the lyme disease "calling card" in the form of a bullseye rash on my upper thigh. I thought what I had was a bug bite getting worse as it started to spread about six inches wide and was slightly raised. I was also having and still do, neck stiffness, knee pain, a low grade fever, dry burning eyes and a slightly sore throat. This was a few days ago and now I have very swollen feet, ankles, and a bloated tummy. I don't remember having a tick bite but I do take nature hikes when I get the chance.
 
Does this sound like lyme disease and if so what is the first step/treatment/help I should get? What makes matters worse for me as I am on unemployment, no health insurance and hardly getting by as it is. I am sad and a little scared that I could get really sick from this and have no way to help myself get better because I can't afford health care. I am hoping there are maybe some good healing treatments I could do at home?
 
Anyway I would be very appreciative of any advice you guys would have in any aspect regarding lyme disease.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/22/2010 12:55 PM (GMT -6)   
Just have time for a couple of quick notes.

Take a picture of the rash. It could save you tons of angst later on.

It's really important to jump on this quickly. You have the chance to catch this early before it disseminates. If it gets into the later stages of the disease you could have grief for several years trying to get it under control.

See if your PCP will give you some Doxy to get started. Gotta tell ya - beg, borrow or ... well, don't steal ... but do something to take care of this now. Please. I think everyone on using this forum would give anything to catch Lyme this early.
 
edit - take something to the pawn shop or sell something.  Really.   Please don't let it go when it's so easy to treat now.  I can tell you some "horror" stories from missing this early opportunity if you want.  Will have more time later.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

Post Edited (Agmaar) : 8/22/2010 12:59:01 PM (GMT-6)


Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/22/2010 1:04 PM (GMT -6)   
I agree w. Rich, I would give anything to catch it earlier. It sounds you have the rash typical for lyme. rash=you are infected. Get to your PCP asap and get at least a month of abx, but longer won't hurt. I was given only 3 wks and I relapsed within a few months. It is not fun, as my symptoms are much worse than the first time and it will cost me more, also. If you are worried about a couple of hundred $ now, you will have to spend thousands later, and there is no guarrantee you will be cured at a later time. Take a pic of the rash in case it won't be there when you go to see a pcp. You can also go to the ER. It is crucial you get treatement asap In My Oppinion.

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 1:12 PM (GMT -6)   
Hi Rich and thank you for the reply. I did take a pic. of the rash with my cell phone. Not the greatest quality image but I am wondering if this (the image) plus the symptoms I am having is enough for a diagnosis w/o having to pay for a bunch of tests? What is Doxy? How much of it will I need and for how long?

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 1:17 PM (GMT -6)   
Hi Simela and thanks for your reply. What is abx? I am calling my dr. first thing on Monday. Hopefully she can give me the medicine I need w/o ordering a bunch of tests.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/22/2010 1:20 PM (GMT -6)   
Doxy=antibiotics=doxycycline=prefered treatement for lyme
abx=antibiotics

I don't think anyone can answer your question, IMO, it depends of the doc. SOME run a whole bunch of tests, some do not, and are satisfied with the rash as being enough to give you a diagnosis. While you are trying to figure all this out, please remember that the bacteria is spreading quickly and it may take as little as 24 h to reach your brain. Don't want to scare you, but that is what some of the experts say. Also, if you have co-infections, even if you treat the lyme you may still be left with the co-infections. Lyme is not the only bacteria ticks are spreading.

Good luck!

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 1:27 PM (GMT -6)   
Simela if you were me would you just go to the ER today? You think they would prescribe meds for me or tell me to just wait and visit my regular doctor? Sorry I sound so dumb but I have never been this poor and w/o health insurance so I am confused as what I should or can do?

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/22/2010 1:31 PM (GMT -6)   
I tried to email you but your email is unavailable. If you post your email in your next message here, I will give you a phone number for a Lyme hotline you can call. They will be able to answer your questions better than I. If you have the rash, most docs that are familiar with lyme, will just give you the abx. Some of them may think is poison ivy and not give you abx. I have heard all kinds of stories. Post your email here, and I will email you with a number to call. I don't know if they take phonecalls on sunday, but they may. WHERE do you leave (state)?

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 1:36 PM (GMT -6)   
thank you and here is my email revonda_g@yahoo.com and I live in Ohio

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/22/2010 1:44 PM (GMT -6)   
I sent you the number to your email address.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 8/22/2010 1:45 PM (GMT -6)   
Hi Tribalrules!
Welcome to our forum!! I am so sorry that you have a need to be here, but you picked a good forum. This forum is one of the more active forums that I have come across for tick-borne illnesses. I'm sure you will find the people here to be caring, helpful & compassionate.

You need to see a doc as soon as possible. The other have all given good advice. Maybe you could call the emergency room and ask if someone walked into the emergency room with a bullseye rash if they would be given abx or not. To save you from spending any extra money, also call your gp & ask the nurse what your doc would do if someone walked in with a bullseye rash. If neither of them are going to give you any abx, then you will need to get to a doc who will. Lyme Literate Medical Docs are rather expensive, but you definitely need to be on abx asap!!

Trust us on this - please! None of us here really want to see yet another person not get the treatment they need in order to avoid having Lyme & other tick-borne infections become chronic infections!!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

josh1983
New Member


Date Joined Jul 2010
Total Posts : 19
   Posted 8/22/2010 1:55 PM (GMT -6)   
go to the ER. I went to the ER as soon as I noticed my bulls eye rash. Thankfully the doctor in the ER seemed knowledgable on lyme, and immediately diagnosed this as lyme disease. I was given a prescription and on doxycycline the next day

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 2:08 PM (GMT -6)   
Hi Traveler and Josh, and thanks for the advice much needed. I think maybe I will head to the ER in a few minutes. Thank you so much for showing me how serious/important it is to get help right away. Since I am new to this lyme disease stuff I didnt know how fast it could spread?

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/22/2010 2:11 PM (GMT -6)   
tribalrules

I would go to the ER if I were you. Calling your doc or whoever is on call if your doc is not available is also a good idea. DEMAND abx! The longer you wait, the harder is Lyme to cure. Most of us here have relapsed or are not cured because the disease is too far along. Running tests if you were infected for a short period of time is useless, bec. it may not have been enough time for the antibodies to be produced by your immune system, in which case, you will test negative, even if you are infected. DEMAND to see at least an infection disease doc if the ER doc doesn't recognize it as lyme.

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 2:20 PM (GMT -6)   
Simela I am leaving now for the ER. I can't thank you guys enough for the advice and the medicine to ask for once I see the doctor.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 8/22/2010 2:50 PM (GMT -6)   
DON'T go to an Infectious Disease unless you have no other choice!! Although there are always exceptions to the rule - but Infectious Disease Docs do not believe that there is a such a thing as chronic Lyme or any tick-borne illnesses!!! They are actually hurting a whole big bunch of people by their actions of refusing to acknowedge the fact that there is such a critter as chronic tick-born illnesses.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/22/2010 3:42 PM (GMT -6)   
Hi Trav:

I don't think most regular PCPs believe in cronic lyme either, but I do think that the infectious disease docs would recognize the rash.

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/22/2010 4:58 PM (GMT -6)   
Here's my two cents on this one. Everybody that has responded is an expert on lyme so I don't have to worry about that. My advice is about cost. Here in PA our Giant Eagle grocery stores will give free antibiotics to anybody who doesn't have health insurance. I was told Kroger will, too, if somebody asks them to match Giant Eagle's offer. I know for a fact amoxicillin, cipro and doxy are on the free list. Now the problem is getting a doctor to diagnose and treat. Do you have any kind of relationship with a PCP or provider that's willing to listen? We have a local clinic that's income based and in your case, you'd be seen for $1.00....that's certainly a bargain IF and I say IF....the doctor will listen to you. If you don't have this kind of luxury, then yes, you must bite the bullet and FIND some money to pay a LLMD right away. Don't let it become chronic like Simela, Trav, and lots of others (including me). You haven't seen pain, suffering and expense at this point so do what you have to do. And don't settle for the least amount of time on the antibiotics and let them tell you it's gone. If you still have symptoms, then you still have lyme....and hard to tell what else. The very best to you and do listen to these folks...they know what they're talking about.

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 6:09 PM (GMT -6)   
Hi Mamyou and I was hoping like you said that I could get the free antibiotics from Giant Eagle. However the ER nurse practicioner did not believe I had lyme disease. He said I would have a high fever, and more rashes if it was lyme. The bullseye rash I had earlier this week has faded. He also said my rash would have not faded this quickly if it were lyme. He made me feel like an idiot. Seems he would have ordered a test or two? Anyway he sent me out the door with a prescription of 20 doxy pills. Now what should I do?

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/22/2010 6:44 PM (GMT -6)   
You did a good thing.  And you're certainly no idiot.  By all means start the Doxy.
 
Just a couple of questions.  Did you show the ARNP the picture of the rash?  Did you ask how many cases of Lyme he has diagnosed and treated?  Most of us hate to do that. 
 
There is a lot of theory-crafting with Lyme - ie - "i read some guidelines so I'm an expert".  Probably this was someone who hasn't treated a single case of LD.
 
Stay positive.  We'll all be blown off for all kinds of reasons.  It's no fun.  But you should be your own advocate.  That's 10 days of Doxy?  That will give you some time, and could possibly do the job, tho it's not ideal. 
 
I think a good next step would be to call Dr's offices.  Say you have a picture of your bullseye rash and you're looking for a Dr. who has actually diagosed and treated LD.  At least you can weed out all the "experts" who have read guidelines but never followed a case of LD.
 
There are links to sites where people can tell you which Drs in your area are Lyme Literate.  Maybe someone else can post the links. 
 
Hang in there.  You're doing the right things. 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 7:02 PM (GMT -6)   
Thanks Rich and I believe you are right in that the NP in the ER more than likely has never treated or diagnosed early lyme disease. I did take a pic of the rash but it was already starting to fade and the image was not that great on my cell phone. Regardless he should have taken me more seriously. Its not like I go to ER's on a daily basis trying to get an antibiotic fix with a made up bullseye rash. I really do hope he is right in that I don't have lyme but my symptoms and rash tell me otherwise.

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/22/2010 7:14 PM (GMT -6)   
Interesting that NP in the ER said couldn't be lyme yet prescribed doxy. Hmmmmmm. Yes, you've bought yourself some time and Giant Eagle DOES give free doxy, at least it's on the list here in PA. Don't stop there because ten days isn't enough abx. Sounds like you don't have a relationship with a PCP so your next step is to find a LLMD. Surely there's one fairly close to you if you find a list. By the way....a person at the Giant Eagle pharmacy told me it doesn't matter how many scripts you get filled, it's the number of pills per script that's limited. That means I can go in every 11th day and refill a script. Has saved me a bundle so far and I'm grateful. Keep looking tribalrules and don't give up. It'll get a lot worse if you do....

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/22/2010 7:27 PM (GMT -6)   
The doxy was my idea as I was told that was best for lyme from the great advice on here. He originally prescribed amoxicillin<sp? So I have a script for 20 doxycycline 100mg pills. I do have a GP dr I see and will call tomorrow but since I have no health insurance visits are few and far between. Thanks again for the encouragement and wise advice.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/23/2010 5:34 AM (GMT -6)   
?Hi Mamyou and I was hoping like you said that I could get the free antibiotics from Giant Eagle. However the ER nurse practicioner did not believe I had lyme disease. He said I would have a high fever, and more rashes if it was lyme. The bullseye rash I had earlier this week has faded. He also said my rash would have not faded this quickly if it were lyme. He made me feel like an idiot. Seems he would have ordered a test or two? Anyway he sent me out the door with a prescription of 20 doxy pills. Now what should I do?"
_________________________
The ER nurse is an idiot! I never had fever or rashes. Everyone is different. You will not have the same exact symptoms as someone else. Not everyone gets the rash! Tests may not show + at this time, and they are not very reliable to start with. 20 doxy pills is not enough. Try to get more doxy from another doc. I am not surprised your ER nurse is not familiar with Lyme, many docs didn't believe I have it and did not know how to read the tests for lyme, even when all 5 of them were +. It is a continuous battle. You have to do everything you can to win the battle--it is your life. It will get worse if you don't fight for yourself and get treated. Pain and expenses will be much worse.

tribalrules
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/23/2010 8:08 AM (GMT -6)   
Simela the more I think about it I believe the dr or np or whatever he was that saw me was an idiot too. I don't know much about lyme disease but everything I have read so far did not say early lyme disease symptoms were a high fever and lots of rashes. He also said the few people he saw that came in with lyme disease were so sick they were in a fetal position when he saw them. Since I didn't seem so sick and my rash had faded there was no way this guy believed I had it. What I am thinking is he must have seen folks that have had the disease for some time, plus how did he know they had it? This is crazy!
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