RMSF anyone?

My co-infection panel came back today positive for RMSF. Is this even possible? Are there ever false positives?

I have been sick for several years with aches, pains, brain problems, etc, but I have never had the rashes, fever and vomiting I read about online.

Has anyone had RMSF on this forum without experiencing the rashes? I thought RMSF killed people who didn't get quick treatment? I am all confused and am doubting the results.

Doc wants to add 200mg doxy. I've been on iv rosephin for Lyme for a week now and have hit the wall (fever, chills, and pains all over). Not fun.

Would like to hear from others with RMSF...

What symptoms did you have? How long before they found it?

Thank you for the info. I've been searching online but am not seeing much about the chronic form that didn't once start out as the acute one.

Maybe I had it one time without spots and thought I had a bad flu and took abx. It just seems like an odd thing to have and not have noticed symptoms earlier.

I'm going to keep taking the doxy and ask my Dr. more about it on Friday.

Very new to this and even my "friends" think the tests are false positives and I am over medicating for something I may not even have.

I was just told a month ago that my western blot came back with positive for rmsf and was put on 16 days of doxy also... warning you will feel worse at first that is normal.. your body is killing all a lot of them and releases toxins in your system but after about 2 weeks it starts to go the other way and feeling better... what I don't understand is can I have rmsf and not lyme? Or since I have rmsf I also have lyme?

Also don't know if its related or not but test came back with low vitamin D and very low T at 168 and Im 29 so I'm told it should be 600-800 range.

Post Edited (egregory25) : 3/2/2014 10:42:06 PM (GMT-7)

Also by September and since then when taking doxy I herx ridiculously badly and that is why I never took it for more than 10 days yet

lmm22 said...
My RMSF test came back on the low end of positive.. I had bug bites in august and a whole slew of symptoms since then but I think it's due to Lyme and bartonella. My antibody tests came back positive for RMSF but for the one that looks like an older infection. I never got the RMSF rash.. And the only symptom I've had for a few years until august is knee pain and getting sick and catching infections very often for several years. I did have a repeated weekly fever for months and a blood vessel rash, but I never experienced the life threatening symptoms you read about, although it gives me a lot of anxiety. I never had doxycycline in my life until august. Since then I've had it pretty often for several infections but never continuously longer than 10 days yet. So I don't see how it could be gone.. I wonder if I have the chronic form or wth is going on. I also came back borderline for erlichiosis with the older antibodies again and with Lyme I was borderline on antibodies with just a positive 41 band and show symptoms of bartonella and Lyme.

Hi Imm!
Welcome to our community!!! I'm so glad that you found us as well!! Them ore people we have participating in these conversations, the more information that will be available not only to us, but to those who join later too!

I would also encourage you to read our "New to Lyme? Start here!" thread that sits at the top of the forum. It's packed with important information, symptom lists, detoxing instructions/tips and more.

These tests leave so much to be desired! They rely on an immune system response by an immune system that has been compromised, just for starters! So any positive that you get is amazing - low end or not! Positive is positive. No one can have a "little bit" of a systemic infection. And the symptoms you describe - the rash and the fever - were likely from the RMSF, although there are strains of the bacteria that don't produce any rash.

Because you have symptoms of Lyme and other tick-borne infections, you will need to have specific treatment that have been shown to work. You can use a specially trained MD - known as a LLMD (Lyme Literate Medical Doctor) or you can choose to use Holistic medicine and natural medicines - they both work. We can likely help you find a doctor if you would like.

The herxing can usually be brought down by detoxing and taking binders and other things to help your body process the toxins that drive herxing. As I said, we have a great post about detoxing in the "New to Lyme?" thread.

From what I find, your results indicate "a current or recent" infection. When they say recent, the time period I see the most is the last 12 months. They also say that there is a fairly high probability that it can cross react with other Rickettsia infections.

www.columbia-lyme.org/patients/tbd_spotted_fever.html

www.mayomedicallaboratories.com/interpretive-guide/?alpha=S&unit_code=83679 I don't usually use results from places like the Mayo Clinic, but there is so little information that all sources have to be considered and this time, Mayo is saying the same things as I can find in all other places and in many cases, Mayo gives more info.

I do know that if you had had any kind of shingles - you would have known it. Shingles is a virus that lives in the nerves. When a rash from this virus shows up, it's almost always incredibly painful. www.mayoclinic.org/diseases-conditions/shingles/basics/definition/con-20019574

Doxy is the most common treatment for the RMSF, but for shingles you would need to use anti-virals in order to stop the spread of the condition.

AHA! I found a relatively new article on Rickettsia infections!! Well, new to me anyway!! It's a bit technical, but it has some good info and could explain a lot for quite a few people to be honest!
cid.oxfordjournals.org/content/45/Supplement_1/S39.long *It's a free article.

A few statements from the article- I added the parentheses with descriptions:
"In general, the spotted fever rickettsiosis syndromes are similar. "

"Dermacentor ticks most frequently attach to the occipital scalp, where, 7–9 days later, an eschar( dead tissue that falls off) appears in association with painful cervical lymphadenopathy (enlargement of the glands in the neck). Fever and rash are seldom present. Alopecia ( round patches of hair loss) at the eschar site in 24% of cases and persistent asthenia (lack of bodily strength) may occur even after antirickettsial treatment.

African tick-bite fever...produces painful regional lymphadenopathy, multiple eschars, nuchal myalgia (pain in the back of the neck), and, on occasion, a sparse and sometimes vesicular rash (a rash with accompanying blisters). "