posted
My ID Dr. office just called and I tested positive for RMSF.
My Lyme test came up negative by CDC standards. I was reactive on one band on IGG and one band IGM. Last time was reactive 2 bands IGG and 2 bands IGM.
What are the chances I have both versus just the RMSF?
What does this mean? I don't know much about RMSF.
They are putting me on 2 weeks doxy. Is that even long enough? Could the baby have it too?
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Oh my gosh, Holly, I am so sorry.
I don't know a thing about RMSF except that my doggie had it recently and she was treated with 30 days of Doxycycline.
The CDC standards are overly restrictive so regardless of what they say, you may have Lyme.
It is my best guess that two weeks of Doxy is not nearly enough. I also suspect you have Lyme along with the RMSF.
Again, I am just basing this on hunches and what I went through with my pup. She also had Lyme at the same time as the RMSF and we were told that RMSF needs to be treated with more than the "regular" amount of Doxy.
I hope I am not offending you by talking about my puppy's situation here. It is just that I don't have any other knowledge base as I have Lyme, Babs and Bart.
I really think you should see an LLMD. It can take a looooooong time to get an appointment so it would be a good idea to start the process.
Do you know specifically which bands were positive? And do you know which lab performed the test? Igenex is generally regarded as being the most accurate.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
They used LabCorp. They didn't tell me which bands were positive. The first time I was tested I was positive on IGM 23 and 41 and IGG 18 and 41. That test was also from LabCorp.
Not offended at all. :-)
I had been arming myself with all the info I could about Lyme only to find out I have RMSF and have no clue what I am dealing with.
I am calling a LLMD in MO on Monday.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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posted
I'm positive for both as well. The dr prescribed doxy but I'm allergic to it so right now I'm on Zithromax (which he originally prescribed for me on my request) and is retesting the RMSF. I'm not sure if Zithromax is effective for RMSF. I'm seeing him on Tuesday so I guess we'll figure out what the next step is.
I was surprised by the RMSF diagnosis. I'd heard of it but when he told me I had it I looked it up and was pretty horrified. It sounded like I should be dead already!
Posts: 13 | From Staten Island, NY | Registered: Jun 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Holly,
It is my understanding that bands 23 and 18 are Lyme-specific.
Band 41 can cross-react with other bands, so since you have that one plus two other highly suspicious bands I think Lyme is a huge possibility.
I am glad you are making an appointment with an LLMD. That is the best person to treat you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Leelee, that is the way I understand it too. I guess now I am positive on one IGM and one IGG band but they didn't tell me which one(s).
I really want an Igenex test done. I also understand that the longer you have LD the more likely to get false negatives.
I was shocked by the RMSF diagnosis. Like chattygirl, it sounds like I should be dead already.
My symptoms don't match up with it though. My symptoms match up with LD perfectly.
I see the ID Dr. again in a week and I am going to push for an Igenex test.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I will be very surprised if you can get an Infectious Disease doctor to send your blood to Igenex.
That's like asking him to be a traitor to his fellow ID docs who see our lyme docs (and our lyme labs) as quacks and rip-off artists.
Bet he tells you to quit looking at lyme sites on the Internet and quit talking to crazy people who believe they have lyme disease for years.
As a group, ID docs believe lyme is rare and easily treated. Lyme docs believe lyme is common and difficult to get rid of. These are the 2 sides in the lyme war.
If you don't know about this, here is a link to a show that was done by a Boston TV station a number of months ago:
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, I completely agree with you. I am hopeful though that this Dr. might be worth some time. His two week rx of doxy isn't going to do much I am sure.
I am trying to get as much testing and things done here because insurance will pay for it. I am doing what I can while I wait for an appointment with a LLMD in S. MO. I am having myself and my 6 month old baby checked out there.
It was his idea to test me for the TBIs without me ever mentioning it to him. He is actually treating several LD patients as well. I thought he was worth a shot.
I still plan on going to the LLMD but wanted to save some money up front.
Thanks for the link, I am off to watch it right now.
[ 06-13-2009, 10:17 AM: Message edited by: HollyS ]
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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bettyg
Unregistered
posted
tincup said somewhere if you thought you had lyme, etc. to go to ER SAYING YOU HAVE ROCKY MOUNTAIN SPOTTED FEVER ... without treatment, it IS DEADLY!!
tincup had several informative RMSF posts, here's one
************************ tincup Frequent Contributor (1K+ posts) Member # 5829
posted 10-03-2009 02:35 AM
Looks like you turned 100 today.
Congratulations!
[Big Grin]
Arch Phys Med Rehabil. 1997 Nov;78(11):1277-80. Links Persisting impairment following Rocky Mountain Spotted Fever: a case report.
Bergeron JW, Braddom RL, Kaelin DL. Department of Physical Medicine and Rehabilitation, Indiana University School of Medicine, Indianapolis 46202-5111, USA.
A patient initially presented in the emergency room with fever, confusion, and a petechial rash. Rocky Mountain Spotted Fever (RMSF) was diagnosed and appropriate treatment was initiated.
He subsequently became obtunded and required mechanical ventilation and temporary cardiac pacing.
Four weeks later, he presented to our rehabilitation unit with ataxia, hyperreflexia and upper motor neuron signs, dysesthesias, sensorimotor axonopathy demonstrated by electrodiagnostic studies, and a global decrement in cognitive capability.
Although he significantly improved in functional mobility and self-care, he exhibited little improvement in his cognitive impairment at 6-month follow-up.
An understanding of the natural history of, and long-term impairments associated with, RMSF will be helpful to physiatrists in developing rehabilitation care plans and in assisting such patients with community re-entry.
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AJNR Am J Neuroradiol. 1997 Mar;18(3):459-64. Links Comparison of CT and MR features with clinical outcome in patients with Rocky Mountain spotted fever.
Bonawitz C, Castillo M, Mukherji SK. Department of Radiology, University of North Carolina School of Medicine, Chapel Hill 27599, USA.
PURPOSE: To compare neuroimaging findings and clinical features in patients with Rocky Mountain spotted fever and to determine the impact of imaging studies in the treatment of these patients.
MATERIALS: We reviewed the brain CT scans (n = 44), MR images (n = 6), or both (n = 4), and one MR spinal study in 34 patients with Rocky Mountain spotted fever, proved by definitive serologic criteria.
Records were reviewed with attention to clinical symptoms and therapeutic modifications based on neuroimaging; outcomes were compared with imaging findings.
RESULTS: Abnormalities, consisting of infarctions, cerebral edema, meningeal enhancement, and prominent perivascular spaces, were found on four of 44 CT scans and on four of six MR studies.
The spinal MR study showed abnormal enhancement of the lower spinal cord and cauda equina.
Nonspecific clinical symptoms were present in all patients in whom neuroimaging findings were abnormal and in 80% of patients whose CT and/or MR findings were normal.
After treatment, return to baseline clinical status was documented in 67% of patients with abnormal imaging findings and in 93% with normal findings.
Death occurred in 17% of patients with abnormal neuroimaging results and in none of those with normal results.
CONCLUSIONS: Abnormalities on neuroimaging studies were not common in patients with Rocky Mountain spotted fever. When present, they were subtle.
Symptoms at presentation and unfavorable outcomes were more prevalent when CT or MR findings were abnormal. Abnormalities identified on neuroimaging studies did not alter clinical treatment in any patient.
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J Infect Dis. 1990 Apr;161(4):609-17.Links Ehrlichiosis--a disease of animals and humans.
McDade JE. Center for Infectious Diseases, Centers for Disease Control, Atlanta, Georgia 30333.
Ehrlichiae are one of several kinds of obligate intracellular bacteria.
Taxonomically, they are grouped with rickettsiae, but they can be distinguished by their unique tropism for circulating leukocytes.
Ehrlichia canis causes a pancytopenia in dogs that becomes chronic if untreated.
Certain breeds develop severe infections, characterized by fever, anorexia, dramatic weight loss, marked pancytopenia, anemia, peripheral edema, and hemorrhage.
Ehrlichia risticii, a recently discovered species, is the cause of a serious diarrheal disease of horses.
Other species of ehrlichiae have been documented as being veterinary pathogens.
Recent data indicate that E. canis or a closely related species causes an acute febrile illness in humans.
Clinically, the disease is similar to Rocky Mountain spotted fever, except that most patients do not have a rash. Human ehrlichiosis appears to be tickborne and is prevalent primarily in the southern Atlantic and south-central states.
A mild from of ehrlichiosis has also been documented.
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