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    1. #1
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      Taylor's Avatar
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      Arrow Lyme Disease... again.

      As some of you may know, I (Lycanthropy, for those who aren't up to date on the name change) was diagnosed with Lyme disease at age 14 - I'm currently 19 years old, 20 next month. I had 19 erythema migrans lesions ("bullseyes") and was very sick with a high fever, couldn't open my mouth, swollen glands, could barely turn my head, etc. I went on oral antibiotics for two rounds, then got better.

      Several months later, I was diagnosed with Post-Lyme Syndrome/Chronic Lyme Arthritis when some symptoms returned - mainly fatigue, joint swelling and pain (particularly in the hips), etc. X-rays were inconclusive to anything genetic or bone related (osteoarthritis) so with the help of a pediatric rheumatologist and my regular doctor, it was decided that I had post-Lyme arthritis (among other symptoms) - the next few years were a roller coaster of finding the right NSAID to control my pain (particularly in wet or cold weather) and last fall I went on meloxicam 7.5mg 1x a day, and have been doing very well on that since.

      This past Friday I had a funeral in Maine, I noted that my thighs were particularly sore and asked around for some Tylenol (as I can't take much else with my meloxicam). Saturday evening I was a bit sore, but brushed it off as that I was squatting for a good amount of time in the afternoon cleaning my car and plastidipping the wheels (which came out fabulous by the way!).

      Anyways, sleeping was tough last night. I was very sore and could not get comfortable. My hips and knees ached, something wasn't right. My boyfriend left for work around 7:30am - and I was in and out of consciousness after that trying to get comfortable and sleep. When I woke up, the pain was pretty noticeable. I could NOT get comfortable. My hips ached terribly, I felt like someone was tearing my hamstrings and quads like I could feel the sinews stretching and tearing, my knees ached, standing up was very painful as was walking. This wasn't my regular bad post-Lyme flare up - and it didn't make sense given the past few days have been beautiful weather wise. The first thing I did when I got up was text my boyfriend and my mother and say "Jeez if I didn't know better, I'd think I had Lyme disease all over again. So painful."

      I knew all day that something was off, even after taking my meloxicam - I still hurt. The pool felt nice, it was 90° out.

      Around 2pm I looked down at my knee.

      well would ya look at that.

      -image-jpg

      Just like before, only new location and not as noticeable. The heat tends to bring it out, sometimes if I'm inside in the a/c it disappears completely. Sure enough, it's on my more painful leg - my left knee.

      So now here's the dilemma. Hoping the rash is noticeable when I go see my PCP tomorrow so he doesn't think I'm a liar (especially because he doesn't believe in post Lyme issues) and wondering what he'll recommend for treatment.

      oral antibiotics clearly didn't seem to do the trick last time. I want IV antibiotics. For 12 weeks or longer. I'm not fooling around this time. I'm going to see what my PCP says tomorrow, and if I don't like what he sad - I'm pretty sure Mass General has a Lyme disease unit with the rheumatology department that I'm going to try to get to.

      has anybody has Lyme disease more than once? Do they generally attack the second case more aggressively in terms of antibiotics, or treat it just like the first one? 21 days of doxycycline is not enough.

      Im 19 and already on meloxicam daily, and still have days in the winter where I'm too sore to get out of bed. I don't need this to get worse.

    2. #2
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      amy_amy's Avatar
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      If you get in to see someone at Mass General, maybe ask about plasmapheresis? You can do the IV abx if the plasmapheresis doesn't "work", I believe....

      Best of luck

    3. The Following User Says Thank You to amy_amy For This Useful Post:

      Taylor (06-08-2014)

    4. #3
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      janedoe's Avatar
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      I'm am so sorry. Please do be aggressive about your treatment. I hate doctors who act like Lyme is nothing. There are specialists. I took my mother in law to one at what used to be Fallon (I think it's Reliant now) in the St Vincent's Hospital complex in Worcester. He was very attentive and did the 21 day antibiotic treatment for her but she wasn't able to tolerate it and we had to cut it short. That was the second time she had Lyme. Unfortunately, she started having other issues related to age during that time so we had a heck of a time figuring out exactly what was going on since she couldn't express herself clearly any longer and she was diagnosed with cancer shortly afterward and passed a couple of years ago. The first time though, she refused to leave the doctor's office until they did something. Four doctors told her she was nuts. She sat there until they gave her a massive shot of antibiotics. That was twelve years ago.

      I am appalled that any doctor would claim that it's not a problem in this day and age. Please do be proactive about treatment and know that some doctors are just stupid. You are your own best advocate.

      All good thoughts. Let us know how your appointment goes and what you do from there.

    5. The Following User Says Thank You to janedoe For This Useful Post:

      Taylor (06-08-2014)

    6. #4
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      Sue's Avatar
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      You need a Lyme Literate MD. One that doesn't follow the stupid IDSA guidelines, and will treat you properly. With IV antibiotics, if necessary (and it may very well be). ILADS is the organization you want. Here's a link to their physician referral:

      ILADS Physician Referral for Lyme DiseaseILADS

      And in Mass, there's this:
      S-L-A-M.org

    7. #5
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      I've had Lyme five separate times. I would find a new GP.
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    8. #6
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      Taylor's Avatar
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      Quote Originally Posted by doubledip1 View Post
      I've had Lyme five separate times. I would find a new GP.
      I should be clear, my current PCP is NOT the one who diagnosed me. My pediatrician did. This is a new-ER doctor who has been very supportive, but sometimes I'm unsure what his views are. He's a big nutrition nut.

    9. #7
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      Quote Originally Posted by Sue View Post
      You need a Lyme Literate MD. One that doesn't follow the stupid IDSA guidelines, and will treat you properly. With IV antibiotics, if necessary (and it may very well be). ILADS is the organization you want. Here's a link to their physician referral:

      ILADS Physician Referral for Lyme DiseaseILADS

      And in Mass, there's this:
      S-L-A-M.org
      Ive gotten a referral, none of which are covered by my insurance and paying OOP is NOT an option. All the referrals they gave me were NDs. That's the biggest problem. Insurance. I'm a 19 year old up to my eyeballs in student loans and I'm lucky to have $50 to my name after my bills are paid every month, prescriptions, dog food, etc.

    10. #8
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      WhoopsaDaisy's Avatar
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      I am SO sorry that really sucks. The ticks in your part of the country are bad, aren't they? I had a coworker with post-Lyme disease and she went through the ringer trying to figure out what it was.
      I agree, find an MD or DO who understands Lyme .
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    11. #9
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      Bamps's Avatar
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      Oh that's not good. I hope you get better.

    12. #10
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      4Thelove's Avatar
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      that sucks! sending positive energy your way

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