Here's my story really briefly: I was bit by a few ticks back in 2001. One little guy buried it's head in my arm, and from that spot about 3 weeks later, I started getting lesions that eventually spread over my arm, then to the left arm, then to the right leg, and then to the left leg. EVENTUALLY I was diagnosed with Rocky Mountain Spotted Fever, but they didn't do a lot of tests. I don't know if that was correct or not. Anyway, I was on antibiotics (a generic zpac) for 8 months, 6-1/2 of that time it took for the rash to begin to go away.
3 years later, I get another rash, which over the years spreads, but this time over my torso area. I was diagnosed with many different things: Pityasis Rosea, a fungus, etc. It continued to spread.
Then I started noticing that my immune system was breaking down. I kept getting pneumonia and I was having severe joint issues, esp. on my right side, but didn't connect these issues most of the time.
One year I was sick of being dangerously sick all the time, and went BACK to one of the doctors -- the one that diagnosed me with Pityasis Rosea 2 years earlier. She did a Western Blot and an ANA titer test, found that I was only in the "equivicable" stage, but needed more tests, and that I was ANA positive --- confirming my own assertion that my immune system was very low.
I ended up also learning that I was getting "Baker's Cysts", and two knee surgeons told me that it might be related to the tick bite I mentioned in my chart questionnaire. MRI's confirmed the Baker's Cysts, and apparently they are common with people who have had Lyme.
So I got a regular doctor, and she put me on Doxycyclene, and I've been on it for 2 years. NORMALLY, this drug cures the rash symptoms after 3 days, but sometimes (I know I'm wrong for this) I stop taking the drug because it makes me soooo darn incredibly tired and I feel my body needs a few day break. Whenever I do a break, however, the rash comes back, and each time, it grows quicker and takes longer to go away after I restart the doxy.
She thinks I'm going to be on this the rest of my life, but another, unrelated doctor (my oncologist) says that one of two things will happen: 1.) My body will become immune to it, or 2.) My body will eventually reject it, after much abuse. I take it because simply I'm happy to be alive and/or not struggling with pneumonia. But it makes me sooo weak, that sometimes I pass out, seriously, and it's hard to do anything the first few hours after having taken it.
Sorry to tell you my life's story practically, but I am very frustrated about this and wanted to reach out to see what are other good options and/or suggestions.
Thank you!
~lynea
Posts: 2 | From Kansas | Registered: Jun 2011
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for help.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
i had pityriasis rosea earlier this year and it wasnt like the rash you explained. mine started on the torso and spread to the pelvic area.. it went away after less than a month, without antibiotics or any medications. also it isnt known to return, once you get rid of it you cant catch it again.
although you probably already ruled out PR i hope this helped.
Posts: 10 | From Pensacola, FL | Registered: Jun 2011
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