posted
The first time I saw my current LLMD, after he looked at my labs he said "Ah, you survived Rocky Mountain Spotted Fever! That can be deadly you know." I'm like, thanks doc, I'm glad I survived too...
The impression I got was that it's more acute and less chronic, and if you survive the first week that you're generally safe after that. But I can't say for sure. Doxy is supposedly the go-to treatment, but I'm sure you know that already.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I didn't have any titers to any rickettsia when I tested last year, but then I didn't have any titers to ehrlichia either, which showed up in PCR. DNA Connexions, the PCR test I took, doesn't test for it.
From what I'm reading people who were never treated go down slow but sure and people who were treated have a lot of late effects. I'm not sure if late or long term treatment even works.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Member # 47170
posted
My sis said we had the chicken pox 3 times ...ummm rmsf ....see willys swiss agent post ...does venom get it ...traveler on hw did it with herbs ?...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Member # 45305
posted
Asking pretty much all the same questions I am blue. RMSF is a bad MF. I'm reading stories about people who are never the same afterwards...but maybe they also have Lyme and don't know it?
Doxy only in the literature and I just don't know whether BVT works on it or not.
Posts: 2057 | From Florida | Registered: Feb 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Many of my LLMD's have told me that chronic form of RMSF (and erlichia) is easy to treat with a few weeks of doxy and rifampin, which I did for several months. Both types of antibodies no longer show up in my blood work, but they did before I took this combo.
Treatlyme.net doc also says the same on his webinar and treat lyme book. Bartonella, lyme and babesiosis are much harder to treat and cure.
Posts: 2386 | From New England | Registered: Aug 2011
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Jordana
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Member # 45305
posted
That is what the LLMDs say but people who've had it write that they had it and were never the same; lost function, kept getting sicker/disabled etc.
Like I said I wonder if it's continued chronic RMSF or if they also have Lyme, or something else.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I've had untreated RMSF for years and I ain't dead yet. How happy is that?
quote:Originally posted by Jordana: I'm starting to get the feeling this might be my mystery issue.
What I've read about this infection is not at all encouraging -does anyone have experience with this?
How is a chronic untreated infection handled?
Anyone get better?
I can't say what will happen, but I am sure I've had rmsf for a couple years. I got very ill a while back and never recovered. My health kept going downhill. Couldn't even walk without crutches holding me up-like under my armpits. I just thought I was going to die if they didn't find it. My body was just rotting away, literally, as in I could smell a difference. Drs ran batteries of tests, they just gave up and diagnosed me with fibro or just said I was faking it. I couldn't even wake up. Imagine the feeling of crippling fatigue-for years. The joint pain was unbearable, bones, skin on fire, extreme confusion, and so on. In all these tests-no one checked me for rmsf? This new doctor I got, did it about the third time I saw her. The office called me back a week later saying that I was positive, with more checking, the level said it was a previous infection. I even have sores all over, why did no one test for it-I saw so many different drs, specialists,er, rheum, pain, primary. Well, the point is, that I started doxy yesterday, had a bad reaction (like my head was going to explode) but this morning was the first time in years that I just couldn't wait for the alarm to go off, weird. Hope things keep getting better.
Posts: 1 | From Missouri | Registered: Oct 2017
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There's a terrific LLMD in Missouri. Do you need info on him?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I had RMSF in the spring and it was no fun. The first symptom was severe rib pain. Felt like someone had punched my intercostals over and over to the point I could barely stand up straight. Tested positive and took a course of doxy and all other symptoms cleared, except I still have some rib pain. Not as severe, but I certainly wonder why it is still there after over 4 months. It was surprising how fast I became ill. It was acute and sudden, and since I knew I had a tick bite, there was no question and they treated me on the spot, even before test came back. There is a person in our community who nearly died from it and she has lots of continuing issues. ER and doc kept sending her home and totally missed it until it was almost too late. Criminal that it happened in NC, where it is so prevalent.
Posts: 2275 | From NC | Registered: Oct 2000
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posted
I test IGG positive for RMSF and also from NC. Went untreated for 5 years. I have some rib pain too. Mostly my symptoms are numbness, internal buzzing, some twitching/cramping, mild joint pain, fatigue, heart stuff. I also have a positive c6 elisa for lyme. Antibiotics have not done much to change my symptoms and I've tried various combos.
Posts: 1 | From North Carolina | Registered: Sep 2015
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. Very glad to hear it TC.
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