Vocabulary: Empower yourself by knowing the language of the problem.
Zoonotic: disease transmissible between humans and animals
Spirochete (spirochaete): a bacteria which has a spiral form, such as most of the tick borne disease bacteria
IFA: Immunoflourescent Antibody (assay)
PCR: Polymerase Chain Reaction, http://medical-dictionary.thefreedictionary.com/PCR
RMSF: Rocky Mountain Spotted Fever, a spirochete disease, caused by the bacterium Rickettsia rickettsii.
I have had Rocky Mountain Spotted Fever, twice. I found it hard to even get a test to confirm this, even though I had unique symptoms of this disease. When I was tested via IFA, RMSF was confirmed. Without treatment, there is a 20% mortality rate. A lady my age who lived nearby, died from this, at the same time I was ill. Fortunately, I was able to nurse myself through the acute phase. I was discussing this ‘flu’ with a friend who is a vet, and she recognized the RMSF and urged me to follow up with a physician. I was dismayed to find it was difficult to even get tested, however, the MD did give me an 11 day course of Doxycycline, and I did improve. In the meantime, I attempted to follow up with an infectious disease specialist. It was very difficult for me to get an appointment. In July, many of my symptoms returned. (along with a different kind of bug bite – more on that later). I got an infectious disease appointment for the end of November. That doctor required the test, and then my general physician did test me and I was positive. I know of 4 other people in my area (SE Virginia) with RMSF, and three got it in April.
If you suspect you may have a similar problem, my check sheets may help you get started on treatment. This is the first in a series.
Check Sheet 1
- Why do you think you might have a tick borne disease?
- You found a tick embedded on you (forget about how long it was in, if it is starting to feed on you, he is suspect; in my area 95% of the ticks carry at least one zoonotic disease, according to UNC researchers.
- You had a bull’s eye rash (many don’t have this, I did not, either time, and mosquito bites can cause it also)
- You have other symptoms: http://www.cdc.gov/ticks/symptoms.html
- Note and record, for your physician
- Location where you live, or where you got the tick
- The tick (photograph and save in a zip lock baggie in the freezer if possible)
- Your symptoms.
- Try getting a test (IFA or PCR) through your general physician. It may help if you can state why you suspect a tick borne disease. For example, “I had a high fever, convulsive shivers with involuntary vocalizations, and cellulitis – which is consistent with Rocky Mountain Spotted Fever.” It can help if you have a good relationship with your MD.
- When I could not get a test this way, I scheduled an appointment with an infectious disease specialist at a teaching hospital. They required me to have a test prior to my appointment. I went back to the general MD and was then given the test. It was positive.
- Start researching
- CDC website: http://www.cdc.gov/lyme/resources/tickbornediseases.pdf
- Merk Manual:
- Consumer version: https://www.merckmanuals.com/home/infections/rickettsial-and-related-infections/overview-of-rickettsial-infections
- Professional version: https://www.merckmanuals.com/professional/infectious-diseases/rickettsiae-and-related-organisms/overview-of-rickettsial-infections
- By comparing both, I can teach myself the technical words, so I can better understand scientific papers
Coming soon: Ways to decrease the ticks on your property and repel them on your person