posted
I came back equivocal for this infection when I began treating and it's now showing as a positive.
Has anyone rid themself of this infection? And who else has it and would care to share their experience?
Posts: 77 | From Denver | Registered: Feb 2012
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GretaM
Frequent Contributor (1K+ posts)
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posted
Yes.
Had the rash.
Dermo gave me steroid cream.
Neuro ignored it.
And ignored my fever.
I had it for 5 months. Was covered in spots. People were staring. They were asking about the spots. I just kept saying, "Oh it's just a rash. I have a cream."
Then when I saw an LL for my neuro issues, he looked at it immediately, pressed the dots. Some dots were big some small. All over my body. Not on my face. took some good pictures and prescribed doxycycline for it right away.
6 weeks of high dose doxy for RMSF cleared up the rash.
Other abx added in after with the doxy for other co's and lyme.
The scars are almost gone now. Been just about a year.
All my bloodwork was normal. Was negative ELISA for RMSF. But textbook RMSF everything else except the dying part, thank God.
It went chronic instead of acute. I was lucky. But I curse the dermo and that neuro every day. Funny how both of them PUSH Botox in their fields...coincidence...nope...drug company conditioning.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I am so sorry you went through that. Horrible.
What dose of doxy were you on?
I never got a rash.
I am on a crap ton of meds for other infections too.
Posts: 77 | From Denver | Registered: Feb 2012
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GretaM
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posted
PM ing you.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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beaches
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posted
I tested + for this as well as many other co-infections. Never had a rash from this or any of the co-infections. Just had many, many kidney infections...that was apparently the first sign of LD and cos for me.
RMSF is a ***** and a half. So glad I escaped its wrath despite testing +.
Posts: 1885 | From here | Registered: Jul 2012
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posted
i tested positive also. Only had a rash on the bottom of my toes which i don't even know if they were related to the RMSF or not. I did 3 months of IV doxy right after i tested positive.
I felt the best I've ever felt while on it, but now crappy again. That was 2 summers ago.
Hope you get some relief.
Posts: 908 | From Albany | Registered: Nov 2008
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oxygenbabe
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RMSF cross reacts with some other spotted fever rickettsia, including parkeri and ambylommi. You may have one of those (not the OP, but others)
Posts: 2276 | From united states | Registered: Jun 2004
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beaches
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Oxygenbabe, never heard of parkeri and ambylommi!! Any idea if there are tests for those?
Posts: 1885 | From here | Registered: Jul 2012
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quote:Originally posted by beaches: Just had many, many kidney infections...that was apparently the first sign of LD and cos for me.
- I never heard that or thought about it. I am sure both of my parents had Lyme & Co back in the 60's. My mom had NUMEROUS kidney infections back then.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 94685 | From Texas | Registered: Feb 2001
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Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beaches
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thx Bea. I remember the name Spirostat. I think I'll pass on the testing unless it's covered by insurance (yeah, right!).
Posts: 1885 | From here | Registered: Jul 2012
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oxygenbabe
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If you test positive for RMSF or borderline but never had RMSF you may assume you have one of the others. It will respond to doxycycline
Posts: 2276 | From united states | Registered: Jun 2004
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beaches
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thx oxygenbabe for that info.
Posts: 1885 | From here | Registered: Jul 2012
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map1131
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Oh was I ever spotted, from neck to toes in summer of '99. Yes, it was a couple weeks after I went on doxy for possible lyme disease.
My PCP just gave me the medical book dose of doxy at first 100mg 2 x a day. The sicker I got he started adding in amox or ampicillian. That was about 2-3 weeks into the illness from he!!.
Then that didn't help, threw some z-pack. He tried. He might have upped my dose of doxy because he was throwing everything at me to try to help me.
I've never tested positive for RMSF or rickettsia infections. I still get additional bright red pin points every month to add to my collection.
They eventually fade to lighter brown. My body is covered with these spots.
People have asked if those are age spots, no they are not. This on my hand is an age spot or liver spot, whatever is the normal aging spots. They are 10 times the size of my pin dots.
They were bright red when they came out and now they are one big dot to dot to dot collection of different shades of red, pink, brown, tan dots.
As bad as they have been at times, I've never got them on my face. For that I'm very blessed.
I do know the new red dots come with my every 2 week bartonella flares. More dot to dots. I so wish I knew the names of all the bad guys in my system.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6402 | From Louisville, Ky | Registered: Jan 2002
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oxygenbabe
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map1131
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I used to have a perfect picture saved in my favs on a medical abstract written on rickettsia, I believe it was. I'm going to see if I can find it.
Well I can't find it. I even had a hard copy of it, but I've been all through my huge box of files and can't find the write up and the picture that was exactly as I looked that summer.
Ehrilichia and rickettsia rashes are both examples of how I looked. Negative negative is all I ever get on co-infections.
Oxygen, some pretty serious rashes on some of those folks.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6402 | From Louisville, Ky | Registered: Jan 2002
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posted
My doctor ran a co-infection panel, and I tested positive for RMSF last week. But I don't ever remember a rash or being as sick as the description of it.
I do have Lyme symptoms, which I also tested positive for. Aches, fatigue, mental, neuro, etc.
Could the RMSF have been a false positive? Dr. put me on 200mg of doxy anyway.
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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oxygenbabe
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From all I've read, your RMSF could be another rickettsia, less serious, that cross reacts with RMSF serology. It could be parkeri, it could be ambylommi (mild) or even another one they haven't identified. Doxycycline does take care of them all, and lyme, too (though lyme may need a combo)
Posts: 2276 | From united states | Registered: Jun 2004
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