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Lyme Disease
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Posted 11/28/2009 7:23 PM (GMT 0)
Hi all,

   I am 19 years old. Last August (2008) I got little red bumps on my left hip... over about a week in a half it grew into a large swollen round rash. It was very large, I also was itchy everywhere and had hives and the chills. My mom took me to the er. It was about three weeks or so from the first sign of the red bumps until I went to the ER. They tested me for Lymes and said that a lot of the test came back positive. It took about 2 weeks for the test results to come back and then they put me on two weeks worth of antibiotics and told me that was all I needed. I felt better and I never had any major joint pains or fever. Then about 6 months later (February) I got little red bumps in the same exact spot as the first little bumps appear but they never grew in the EM rash. At the same time I also had infections in both of my eyes. I went to my campus doctor and they told me I had ring worm and that my eyes were bloodshot from allergies (which I didn't have any other signs of allergies). And I told the doctor about my pervious lyme experience and she said as long as I was treated Im fine. So I just used the cream for the rash and the eye drops for my eyes and went on with my life. Then this past August (2009) I went to the ER because I had bad heart pains that radiated down my left arm. They looked at me like I was crazy and told me that I had a strained muscle. Then this past November has been the worst month of my life. I started to get chet pains and ANXIETY was off the way for no apparent reason. I went to the ER again and my blood pressure was 208/88!!! They did all kinds of tests on my heart and told me everything came back fine! I made them test me for Lyme again and those results came back negative. They told me that I probably had heart burn and anxiety! Then about a week ago I went to the ER for really really really bad pelvic and lower back pain. They did test and cultures to look for std (which I would have never come incontact with) and all that came back negative. But they did find traces of a uninary tract infecition and a cyst on my right ovary (which I am on the pill so I really shouldnt have). So they told me all my pain was from the cyst and that it should go away soon and they gave me three days worth on antibiotics for the urinary tract infection. It really has been the worst month EVER. My lower spine/back hurts really bad still and I feel like I have pain in my pelvis. When I try to go to sleep at night it is almost impossible because I have heart palpations. The last doctor I went to tried to put me on antidepessents and antianxiety medicine but my mom won't let me take it because of the side effects. I also and having sudden pains in my hips. And at one point the other day i closed my eyes and opened them again to see a MILLION floaters. Also at some points I have numbness and tingling in my hands and feet. People have told me that I need to see a doctor because I am a hypocondriac and it really is upsetting because I usually never was like this. Could this be Lyme? I was treated for it and I read many places that two weeks will cure it. I've never had anxiety before this and all this is really ruining my life.. as well as all my loved ones because they hate seeing my like this. Does anyone think it is possible that I still have Lyme or is it just anxiety doing all this to me? Please help and let me know what you think. I am nervous about going to a Lyme Specialist if it is not likely that it is lyme because I know it is going to be so much money for my already struggling family. Please Help.

-me

Posted 11/28/2009 9:36 PM (GMT 0)
I went to the dr as soon as I saw the tick on me and was treated with antibiotics for three weeks and told I would be fine. That was in April 2007. By the summer, I barely could walk. Needless to say, they were very wrong. What you are experiencing could totally be Lyme. I have been treated now for over two years and the light at the end of the tunnel is finally not a train anymore!
Posted 11/28/2009 10:38 PM (GMT 0)
Yes, this could absolutely be lyme.  Please don't do what I did and listen to those who tell you otherwise.  I have been four years of my life turned upside down because I told myself it was in my head and listened to those that told me it was "just anxiety."  If you get the right help now, it will be a lifesaver.  It will not go away without the right help.  Please be your own best advocate.  I refused to give up, I just wished I had gone with my gut instincts earlier than I did.  You have nothing to lose if you go to a lyme dr.  I did, didn't like him, but got the diagnosis and am now with infectious disease dr. who I really like but not sure he is aggressive enough for me.  Take the step.  You can only lose if you don't.  Good luck.  Feel free to email me with any questions.
Posted 11/29/2009 12:41 AM (GMT 0)
Hi lds24,

I agree, this could still be Lyme Disease. Two weeks of antibiotics is not enough for an early infection. The suggested time frame from the ILADS site is at least six weeks.

What antibiotic were you prescribed?

Here is an explaination of dosing from the ILADS site. You may want to read this site and get yourself educated about this disease. Maybe make a copy of it too to show your family.

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Cysts on the ovaries can hurt very bad. I have them. I also have fibroids too. I actually had to start taking the Depo Shot to stop my monthly cycle because the cysts I had would hurt so bad. They still bother me sometimes but not nearly as bad anymore.

You will definitely want to find an LLMD. They will be able to figure out what's going on. They are not just Lyme Literate, they are regular doctors too. This is the only way that you will recieve proper treatment. Most regular doctors do not know how to treat Lyme and the disease will only get worse if not treated.

Here is some information for you to find an LLMD in your area:

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker 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 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/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.
Posted 11/29/2009 5:01 AM (GMT 0)
Hi lds,

I'm sorry to hear you're feeling so bad. As people have said- it definitely could be Lyme. They've given some good advice, and some steps to follow through with.

If you find out this is Lyme, I would get as much actual literature on it as you could (there's a book called "Cure Unknown", and a movie called "Under our Skin.") to show to your Mom. If you see an LLMD, they can also talk to her. My Mom thought I was a hypochondriac for a while, but when I brought her a symptoms list, and a bunch of information on Lyme disease, she started to consider it. I brought her with me the first time I saw a lyme-literate naturopath, and that convinced her.

Good luck!
Posted 11/29/2009 7:51 AM (GMT 0)
ids,
We all know about the expense of treating Lyme, but if caught early thousands of dollars will be saved.

Don't let a negative test result fool you...happens all the time when you really have Lyme and that's a large part of the problem and why doctors don't initiate treatment.

I feel if Lyme is suspected antibiotics should be started even before test results are in.

Sounds like Lyme to me too.

Jane
Posted 11/29/2009 9:28 PM (GMT 0)
Hi.  I agree with everyone else who has posted.  It is important to get to the bottom of this now, before it gets worse.  You do not need to have joint pains or fevers to have Lyme disease and other tick borne infections.  I don't know if you were tested for coinfections when the Lyme test was done, but that could also be a source of your symptoms.  If you did not see a LLMD, then it is likely you were not tested for coinfections, or the correct tests may not have been done.  These infections get worse over time, and can invade more of your body making them harder to get rid of, and making it more difficult for you to live your life.  I really hope you will see a reputable LLMD in your area to get an accurate diagnosis so that you can get back on the road to health.  It is worth the expense either way the test results come out - there's obviously something wrong and you need to know what it is.  By the way, Lyme, and the coinfections (especially bartonella) can cause anxiety and other psychological symptoms.  Your anxiety could be a result of that.

Taje care,

Rose

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