Topic: Rocky Mountain Spotted Fever...shows up after years?
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've had Lyme for 6 1/2 years and suddenly Rocky Mountain Spotted Fever shows up positive? I think that's a little strange. But I have also been really, really sick the past few weeks with nausea, severe headaches, body aches, and fatigue that I guess is from the RMSF. Has anyone else suddenly shown up as positive after years of treatment? Any idea why this happens?
I just assumed it was dormant and tested positive but now I'm actually connecting my symptoms with it because I can't attribute them to anything else, and they are the exact symptoms of RMSF. I'm starting IV Tygacycline for this ASAP. Very concerned about getting through that!
Would welcome any info or experiences on RMSF and how if can just rear it's head years into treatment and make me so sick like this!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Given that it's so acute now, I have to wonder if you got exposed recently. It can still happen in the winter.
Either that or it just revealed itself when something else was knocked down. But it does sound like an acute infection.
Are you and your family practicing extreme care to prevent any more exposures?? If not, you really need to. None of you can afford to risk rexposure. Believe me, it's no easier to get another bite when you are already in in tx. I've been there.
Now I will do anything and everything to prevent it. It's a long road back when your burden is added to, on top of the already overflowing plate.
I know this may sound like a lecture, and I don't mean it that way---just that we can't afford it. And there are LOTS of measures to prevent that. Although, living where you do, that's a definite challenge. Sigh.
Do you have pets that go in and out?
Posts: 3766 | From around | Registered: Mar 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Wow, Tracy. I hope knocking this one back will bring you some relief!
posted
I also don't mean to be negative -- but my question is is it possible that RMSF could be transmitted by the IV IgG treatments? I have also been concerned about just how safe those treatments are.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Well either of those scenarios are possible but remotely so....but yes, they are possible. The thing is I don't have the high fever that usually accompanies the intial onset of RMSF....so I was assuming it was a resurfacing of an old infection.
I can't imagine being rebitten, up until just days ago we've still had total ground cover with up to two feet of snow. There wasn't really any way for the ticks to have emerged yet. Plus I do not leave the house except to walk to the taxi to go to the doctor. We do have a dog. My husband does handle firewood outside on a daily basis which I try and tell him is a high risk factor.
The IVIG treatments are very safe, there has been no reported transmission of any disease in many years from them. All viruses are killed, the blood product is bleached and processed. However obviously a tick borne infection or other bacterial infection could be passed on. But for someone to pass on RMSF I would think they'd be awfully sick and would not be able to donate.
My husband tested positive for it 8 years after getting sick, so it's not just me. There has to be something to this.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
This may sound like a stupid question, but what made your LLMD decide to test you for RMSF?
I am pretty sure that hubby has never been tested for that. It seems like some docs don't do much testing beyond lyme, babesia and bartonella. And some don't test for viral issues either -- don't think hubby has ever been tested for CPN which seems pretty common as a coinfection as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've thought since '99 that I had RMSF mixed in with lyme & co. Tested neg early on.
Tested neg about 4 times since. But it wouldn't surprise me to one day test positive.
I remember back in late 80's finding engorged tick and coming down about 7 days later with many sx.
RMSF was all over the news them days. I went to an immediate care and they tested me and it was neg. But I've got to wonder if the tick bites in '99 woke up some sleeping dogs???????????
Might not ever know the rest of the story.
Tracy, your husband very well could of brought tick in with firewood or on him. My husband is a golfer and he has brought one home that didn't like him.
That night the tick found the meal he had truly been dreaming of. No joke.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6454 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
oh no Tracy..again covering you in prayer..keep fighting!!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Good luck with the Tygacil Tracy. I hope that this treatment brings you a step closer to wellness.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Hmmm, sounds like you are right that it's not likely that you got bitten lately EXCEPT the thing with your husband carrying in logs! Oops, sounds too risky, esp unless he wears gloves, uses permithrin on his clothes and shoes, and you do daily thorough tick checks.
Or, it is just resurfacing. You wouldn't be the first to have that happen.
Yes, LLMD's SHOULD check for RMSF, Cpn, tularemia, and all the other less frequently checked illnesses. and Mycoplasma and Q Fever. Arghhh! It's a lot to consider, but this is our reality now.
Tracy, your (and mine) LLMD is very thorough in testing, as we know. It's way better to know this than have it slip through the cracks.
I hope that it brings a new level of wellness for you.
Posts: 3766 | From around | Registered: Mar 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Bea, I'm not really sure if he ordered the test. He forgot to check off the tests on my IGENEX slip and when I called the office, I remembered what I was supposed to be tested for and they just said "yeah yeah yeah" and I think I checked off everything possible so as not to miss anything, lol.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I tested pos for RMSF as well. Years after any last known tick bite. *shrug*
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
Regarding the IVIG, I think it is possible that you got the antibodies passively transferred to you but this is just a possibility..and may be a very remote one.
Remember, these are antibodies and NOT antigens being passed on so you are not getting the disease..just the antibodies which is why it is theoretically possible to test positive even though it is not your own body producing the antibodies.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Icky Ticky, myself and my husband both did, so there must be something to it. Well I've been real sick with the symptoms of it too for almost a month now, severe headache, body aches and nausea, have lost ten pounds (THANK YOU), and I can't chalk it up to the flu any longer.
Who knows. Was hoping someone might have the answer. But we are living with TBD's and not many answers!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
What about your hubby carrying in that firewood?? Sounds awfully risky, unless he practices extreme precautions.
I'm not saying that is definitely what is happening, but, boy, you guys don't need any further infections! Plus, it does sound rather acute.
The no no's are a drag, but not nearly as much of a drag as being so blasted sick!
Posts: 3766 | From around | Registered: Mar 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tracy, have you been peeling the onion away? Are you controlling a-b-c and D has raised it's ugly head?
Just a thought. Gigi has always talked about how territorial these SOBs are. One goes down the next one is in control????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6454 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
I knew it could be transmitted by touch if the tick had it and you had broken skin, but did not know that the blood from a dead tick could transmit it for up to a year if you came into contact with it.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Wow Bea, that's scary!
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, arggh! These critters will long outlive us, I'm sure.
Posts: 3766 | From around | Registered: Mar 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Pam, excellent thought. I did just beat Babs about five months ago. That is a very intriguing theory.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
quote:Rickettsia conorii is an obligate intracellular bacterium that causes Mediterranean spotted fever in humans.... Despite these differences, the two genomes exhibit a nearly perfect colinearity
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Interesting. And Rumigirl, I had a talk with him today about the firewood. He explained he wears only one shirt and leaves it outside, wears medical gloves and throws them away, and doesn't let the wood touch his body. No one could be more paranoid about ticks than him. He has a fit if the dog comes in the house even though I've treated the dog with K 9 Advantix. When he goes in the woods to cut wood he strips down to nothing on the porch (we live on 26 wooded acres, no neighbors) and jumps right in the shower. His clothes are all treated religiously with Permithrin. I had to stop him from spraying it on the animals. He sprays our yard with Sevin several times a year. He actually rides the riding lawn mower all around and has a sprayer and goes all around, plus sprays about seven or ten feet into the woods all around the perimeter of the property. As long as he keeps that up we have not seen a tick on any of us. But the dog runs in the woods. We stopped letting the cats go outside.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Oh and we are actually giving the dog away because Blake is SO worried she is going to bring a tick back from the woods, I can't stand listening to it anymore!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic