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?
Posted by GretaM (Member # 40917) on :
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.
Posted by panicphreak82 (Member # 36403) on :
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.
Posted by GretaM (Member # 40917) on :
PM ing you.
Posted by beaches (Member # 38251) on :
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 +.
Posted by jlcd1 (Member # 18138) on :
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.
Posted by oxygenbabe (Member # 5831) on :
RMSF cross reacts with some other spotted fever rickettsia, including parkeri and ambylommi. You may have one of those (not the OP, but others)
Posted by beaches (Member # 38251) on :
Oxygenbabe, never heard of parkeri and ambylommi!! Any idea if there are tests for those?
Posted by Lymetoo (Member # 743) on :
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.
Posted by seibertneurolyme (Member # 6416) on :
Beaches,
There are no antibody tests commercially available for rickettsia parkeri or rickettsia ambylommi that I am aware of.
The lab KS3 (lab renamed -- used to be SpiroStat)does have a PCR test for rickettsia parkeri that is included in their expensive lyme panel.
Bea Seibert
Posted by beaches (Member # 38251) on :
thx Bea. I remember the name Spirostat. I think I'll pass on the testing unless it's covered by insurance (yeah, right!).
Posted by oxygenbabe (Member # 5831) on :
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
Posted by beaches (Member # 38251) on :
thx oxygenbabe for that info.
Posted by map1131 (Member # 2022) on :
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.
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.
Pam
[ 02-15-2014, 02:39 PM: Message edited by: map1131 ]
Posted by Ames777 (Member # 43190) on :
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.
Posted by oxygenbabe (Member # 5831) on :
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)