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I just found out I have Rocky Mountain Spotted Fever, thoughts please...

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Posted 10/4/2016 10:24 PM (GMT 0)

Girlie said...

H Mommy said...
No the fear level is still bad. The health department lady said she and the infectious disease doctor do not believe in my LLMD and they do not recommend following his advice. She said they spoke and they are a doctor and a registered nurse and I should listen to them. She said the doctor who ordered my tests (my LLMD) believes in treating Lyme in a non traditional way and she doesn't endorse him. She said I should see my primary care, the infectious disease doc, and the oncologist/hematologist my primary referred me to on Monday and that's it. She said she and the infectious disease doc think I have a condition which is cross reacting with the Lyme and RMSF tests and causing them to be positive. She does not think I have them. Who is right guys???? Who do I believe??!??? I'm so sick of being sick and just want to be better. I'm so scared that I don't actually have Lyme or RMSF but actually have cancer. And I'm also so scared that I do have them and could die from RMSF if I don't get treatment. What do you all believe? I don't know why to believe!!

I read in your signature - you had two tick bites plus positive WB...not to mention symptoms.
I would listen to the LLMD if I were you.

My regular Dr. had checked me out for so many diseases/conditions...and nothing showed up. I saw several specialists, had oodles of blood work done.

Why do you mention cancer? If you have a fear about cancer and can't get past it...then have it ruled out.
But you have enough 'evidence' that you have tick-borne infections -that you really don't need to look further IMO.

I have been tested three times for autoimmune - my GP wants to 'make sure'...I appease her...

I soooooo agree with Girlie.
Posted 10/4/2016 10:29 PM (GMT 0)
Rmsf can be fatal in first 8 days. Plus you had some ceftin, so it may be dealt with. It's possible lyme disease is causing the positive igg (false positive). I know it's frustrating. What "conditions" do they think can cause positive lyme, rmsf test?
Posted 10/4/2016 10:39 PM (GMT 0)
From cdc.gov

for adults and children of all ages and should be initiated immediately whenever RMSF is suspected.

Use of antibiotics other than doxycycline is associated with a higher risk of fatal outcome. Treatment is most effective at preventing death if doxycycline is started in the first 5 days of symptoms. Therefore, treatment must be based on clinical suspicion alone and should always begin before laboratory results return or symptoms of severe disease, such as petechiae, develop.

If the patient is treated within the first 5 days of the disease, fever generally subsides within 24-72 hours. In fact, failure to respond to doxycycline suggests that the patient’s condition might not be RMSF. Severely ill patients may require longer periods before their fever resolves, especially if they have experienced damage to multiple organ systems. Resistance to doxcycline or relapses in symptoms after the completion of the recommended course of treatment have not been documented.

Recommended Dosage
Doxycycline is the first line treatment for adults and children of all ages:

Adults: 100 mg every 12 hours
Children under 45 kg (100 lbs): 2.2 mg/kg body weight given twice a day
Patients should be treated for at least 3 days after the fever subsides and until there is evidence of clinical improvement. Standard duration of treatment is 7-14 days.
Posted 10/4/2016 11:45 PM (GMT 0)
Then it's a wonder I'm still alive. Both tests were positive for RMSF with me, and not the health department or my Internist questioned it.
Who knows how long I was infected, even if I was infected the day before the blood was drawn it was still 3 months before my Doxy script was written.

I've been asking for a retest and I just get denied, so I don't know if the RMSF was entirely wiped out and I'm still dealing with the 3 B's, or what's going on.
Posted 10/5/2016 12:18 AM (GMT 0)
Gosh Julymorning. The craziness and mystery of it all. Why do they deny retesting you? This is awful for you to be left in the dark. Your post will be somewhat of a comfort to H Mommy. And the delay in treatment puzzles me so.
Posted 10/5/2016 12:46 AM (GMT 0)

Buzzlymeyear said...
Gosh Julymorning. The craziness and mystery of it all. Why do they deny retesting you? This is awful for you to be left in the dark. Your post will be somewhat of a comfort to H Mommy. And the delay in treatment puzzles me so.

My only guess is he figures the abx took care of it and I'm just being a hypchondriac, IDK. He KNOWS I run fevers all the time, I have one every time I go in there and the nurse checks my temp. He calls it FUS. Tells everyone in the office I have FUS. "fever, unknown source." Sometimes I'd like to give him a picture made of dots and a pencil and see if he can connect them.

I just looked at the Igenex site and note that do take Medicare. I sent them a message asking if they also take Medicaid, which is what I have.

Medicaid has to approve treatments and expensive exploratory tests, but I wouldn't think they'd deny paying for lab work.

Surely my Internist would sign off on Igenex testing, it's not like it's coming out of his pocket. Directly, that is.

I want to do this so I know what all I'm dealing with....for sure.
Posted 10/5/2016 3:07 AM (GMT 0)
Nothing surprises me anymore. Good luck with this.
Posted 10/6/2016 3:46 PM (GMT 0)
H Mommy,

Are you ok? I've been worrying about you.

How are things?
Posted 10/6/2016 8:34 PM (GMT 0)
I had RMSF at the age of 7 in 1970. Because I lived on the West Coast and these infections were not recognized at that time (even when they were, it was only on the East Coast), I was never diagnosed, only symptomatic treatments, and a broad spectrum abx was prescribed. As expected, the infection was not treated sufficiently, and I ended up with chronic RMSF and tested fully CDC positive for it after a year of Lyme treatments.

I had the "rare" rashless RMSF. There is very little information on RMSF and even less on Chronic RMSF. For anyone to tell you that your Lyme doc isn't following (ILADS) recommended treatments is wrong - the treatments they are suggesting (IDSA) are no longer even in the gov't National Guidelines Clearinghouse any longer! But the ILADS treatment guidelines are!!

Please go to your LLMD with your concerns about your son and have him evaluated and tested. You may even have to begin treatments with him before getting a positive for whatever infections he may have.
Posted 8/25/2017 8:59 PM (GMT 0)
Traveler, How is your RMSF doing now? I have been diagnosed with it in 2015 and have continued treatment since. Neuropathy in my feet have developed over the last year, not much can be done to stop it. I have other symptoms and co-infections as well but don't feel like writing a book today. This is worse than Lyme from what I've read, one day at a time....
Posted 8/26/2017 5:44 AM (GMT 0)
Hi RMSF4ever - welcome!

I'm not sure if Traveler has seen your post. I will let her know about it.

Are you seeing a LLMD for treatment?

We do encourage our new members to read through the information in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.
Even though you're not 'new' to lyme - there may be something that you havent seen before.
Posted 8/26/2017 7:31 PM (GMT 0)

RMSF4ever said...
Traveler, How is your RMSF doing now? I have been diagnosed with it in 2015 and have continued treatment since. Neuropathy in my feet have developed over the last year, not much can be done to stop it. I have other symptoms and co-infections as well but don't feel like writing a book today. This is worse than Lyme from what I've read, one day at a time....



Sorry for the dealy in responding Girlie and RMSF4ever - I had a little too much excitement in my morning today - hubby went into the ER (he checked out okay for now though). Thank you, Girlie, for making sure I saw this!! Today would have been a day that I missed it for sure!! Can we say 'scatter-brained'? LOL!

Welcome to the community, RMSF4ever!

As far as I know (as the testing is so horrible, particularly once these infections go chronic), my RMSF was healed as I healed from my other infections in 2012. I had the very high fever (104 - 105) of RMSF when I was 7 (actually my first really serious illness* with these infections and what I base when I was infected by), and then - because I didn't have anything other than the 'standard' abx prescribed for "a fever of unknown origin" - that's when I assume it turned into a chronic tick-borne infection - as I tested fully CDC positive for it when I was 37. By the way, I never did have that "tell tale rash" of RMSF or of Lyme - ever.

(*= It's now being uncovered that Lyme is the actual infection that starts the break down of the body's defenses, so it's very likely that I was infected before the age of 7 with Lyme, then continued to 'gather' more infections as my body could no longer stop them.)

If you are past the acute phase, which is sounds like you likely are, then it's a chronic tick-borne infection, as you may realize. If you have not tested positive for Lyme, you should still consider trailing treatment for it, especially if you have symptoms that are not covered by having RMSF only.

Please do be sure to ask questions and let us know how we may be of help to you!
Posted 8/27/2017 3:50 AM (GMT 0)
My husband had RMSF. We went to urgent care where he was prescribed Doxy for10 days. Worked like a charm. After 2 days he was feeling better. Never had any other problems. It has been 5 or so years since then.
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