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I'm new here....Lyme? or just paranoid?

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Posted 8/9/2011 2:37 AM (GMT 0)
Hi all,

I am so glad to have come across this forum.  I need your help! 

I am a "healthy" 32 yo female.  Good health history; only on birth control for meds.

I was bit by a deer tick on my right thigh at the end of March.  The bite took a very long time to heal but I never had a rash.  I was told it was unlikely I would get lyme since the tick may have only been on my skin for a day.  However, 6 weeks later I went to urgent care seeking a Lyme disease test because I was having a variety of odd symptoms including aches and pains in the leg that was bit.  This pain seemed to spread over a number of days to both legs, then my legs and one arm, both arms and then to my neck.  At the same time, I was running a temp around 100 all the time with on and off diarhea and a general unwell feeling.

The doctor did a blood test and gave me 3 weeks of doxycycline.  The blood test was negative; I finished the antibiotics.

It has now been 5 months since the bite and my right leg still aches within inches of the bite site and iinto the back of my knee joint.  I had skin itching and crawling feelings and even had a few nights where ONE spot on my scalp felt like it was crawling.  I began having severe scalp itching--thought I had lic---which I checked for many times and never found anything.  Now I have sores on my scalp. 

I continue to have on and off symptoms that seem like a slight virus.  Diarrhea for a few days, then constipation.  Nausea thats just barely there all the time.  A temp around 99.7 to 100 ish--all the time.   Gosh, I can't name all the symptoms!  It would take all day!  And it makes me feel like I am just being paranoid!

Recently I had frequent urination, burning "down there", and internal pain.  I went to the doctor thinking it must be yeast, a UTI, or a bacterial infection.  She found NOTHING and said all looked normal to her.  I mentioned the Lyme (in passing) and the doctor looks at me like it doesn't matter.  The fact that this leg still aches really worries me that this could be Lyme that just escaped the blood test.

Am I crazy?  Paranoid?  Or right to wonder?  Do tick bites take this long to feel "normal" or is there an infection?

TIA!

Posted 8/9/2011 3:48 AM (GMT 0)
Go with your gut feeling. You are worth it. it doesn't matter what anyone else thinks. You know how you are feeling. I thought I was crazy in the beginning. How could I possibly have stabbing knee pains, stiff neck, tight jaw, blurry eyes, and chest pains and have them tell me it was anxiety? It just didn't make sense. But lyme doesn't make sense. Try and get to an LLMD immediately. It may save you so much in the long run.
Posted 8/9/2011 5:23 AM (GMT 0)
 

You have a lot of compelling reasons to have Lyme.  You should find an LLMD and get tested for Lyme an co-infections through IgeneX lab.  The birth control will exacerbate your gut/bowel issues. 

 

Posted 8/9/2011 10:43 AM (GMT 0)
You are definitely not crazy!!  You have every right to be concerned.   I have gone for years looking for answers only to be told I was crazy and needed to see a psychiaatrist.  Lo and behold....it was lyme the entire time.   I also had the same issues as Jess and i too went round after round of abx and nothing helped.  Went to urologist and had test after test and was diagnosed with cystitis.

You definitely need to be  your own advocate and dont stop until you get answers.  Just like springsjean said....you need to try and see an llmd as soon as possible!!!  My regular doc ran a lyme test back in 2006 and it was negative.  If i knew then what I know now...I would have gone to an llmd and saved myself years of pain and LOTS of money!! If they would have just treated from the symptoms instead of relying on the test results I would have been alot better off. Go with your gut....if you dont feel like something is right....dont let them tell you you are fine OR crazy!!!  I really thought I was going to die....and then I found my llmd and am feeling wonderful and am even back to work!!!

Good luck and I hope that you get to feeling better soon!!

L

Posted 8/9/2011 4:43 PM (GMT 0)
Hi Worried,

Welcome to the forum, we are glad you found us, too!

Take a look at the permanent thread at the top of the forum entitled "New to Lyme"..." There are symptoms lists that you may find very familiar.

I totally agree with springsjean that you should seek out the advice of an Lyme Literate Doctor.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

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) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 8/9/2011 5:26 PM (GMT 0)
   Your story mimics mine. I don't remember a tick bite.....but I have the crawling sensations and I had the sores and crawling in my scalp. Still feel funny down there most days. Something is just off. I tested positve through I genex for Lyme and babesia. I have been going to an LLMD for 10 months and am on Mepron for the babesia, and lots of antibiotics for the Lyme.Do you have burning skin sensations also? I would def try to see an LLMD Asap!
Posted 8/10/2011 2:38 PM (GMT 0)
Thank you all for your replies. I feel nuts! Its like I have a new ailment every couple of days! Yet, nothing ever really develops into a recognizable illness. For example, today I woke with a sore throat and a low grade temp. (The low grade temp is there nearly all the time.) The sore throat will probably go away in a day or two and something else will happen. It is so strange to constantly feel like "I'm coming down" with something and never really have anything turn into a full blow illness.

i feel like I could attempt to explain away all of my symptoms EXCEPT the constant dull ache in the leg that was bitten AND the near constant low grade temp (99.6 to about 100.4).

I have a question about what I have read about toxins/detox which I will post seperately. Thanks again!
Posted 8/11/2011 1:13 AM (GMT 0)
worriedinvt - That is very interesting that you say about the 'still sore' leg months after the bite.

I too was bit on my left outer thigh. Just the last dr visit I ask my llmd about it and he said he had no idea why it would still hurt. I don't think he really cared either. Sometimes it feels like there is a giant invisible bruise there. Not terribly painful but hurts nonetheless.

And I still have a very faint tick bite mark showing. The bite was in April, 4 months now. I was searching for some reason for this as I was curious why the pain at that spot. I just found info about how the spirochetes usually return to the bite site. Beyond that, that is all I could find. I guess that makes sense...

it is sort of like a criminal "returning to the crime site"

I know what you mean - there are umpteen symptoms and they bounce all over the place making me feel like I am making all that up!
Oh! and as for the low grade fever - I had that since April! Sometimes it shows a a slight fever and other times it just FEELS like a fever but its always there.
Posted 8/11/2011 2:08 AM (GMT 0)
Scorp10

We are like bite-buddies! Our bites were around the same time--mine was in March. Did you ever have a positive Lyme result? I've only had one test, 6 wks after the bite; negative. My pain is like an ache or strain. Like when you over use a muscle. I've never had a rash... The leg ache varies each day--today its gone to the entire leg. Ive wondered if the pain is from a concentration of toxins.... I can also still see my bite site.

My dad was bit quite a long time ago and the bite is still black! He had the bulls eye rash but tested negative so he wasn't treated. What the h? Clearly, he had it!!! He had antibiotics and homeopathics for MRSA over many months so hopefully it took care of both but he often complains of leg Pains in his bones. I keep asking him to get checked.

My Prayer is that I get this taken care before its full blown. So many people here have suffered so much.
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