Know Thy Enemy: Rocky Mountain Spotted Fever

Rocky Mountain Spotted Fever (RMSF) is caused by the gram negative, shape changing intracellular bacteria Rickettsia Rickettsii. It was first identified by Dr. Howard Ricketts in 1902 in the Western US and is now found on every continent except Antartica. A member of the Spotted fever group of bacteria, RMSF is considered one of the most fatal of Tick Borne Illnesses if not treated promptly. The bacteria infect the endothelial cells (the linings of blood vessels). From there, they spread through the lymphatic system, parasitizing and multiplying inside endothelial cells.
In the US, Rickettsia Rickettsii bacteria are spread by the American dog tick (Dermacentor variabilis) and the Rocky Mountain wood tick (Dermacentor andersoni). The American dog tick is the one people in the Eastern US need to worry about. They look like this:
dermacentor_variabilis_all

In my opinion, the scariest part about the dog tick is that they are incredibly fast and adept at moving on their own. Much faster than any other tick. And in an even more frightening twist? The majority of dog ticks I have found on me have been picked up in a place often overlooked in all “beware of ticks” warnings. Dog ticks love cleared walking paths where people often travel with their dogs. In my area, we take old railroad lines and turn them into beautiful walking trails. Some of them are paved and quite open. Some are dirt paths through thick woods where the tracks used to go. All have dogs and dog ticks on them. In fact, the only 2 bites I have had since acquiring chickens were dog tick bites that I acquired on the piece of rail trail between Accord and Stone Ridge, NY. Yet, we do not warn people that  dog ticks, which can carry this potentially deadly disease are crawling all over these walking paths. Nobody warns people to be on the lookout. That even staying on the path in such locations doesn’t actually increase your safety.
Here’s what the piece of Rail Trail where I got my last two dog tick bites looks like:
10557294_10205200123781565_763388773098716937_n-2

According to the CDC, there are approximately 300-1200 cases of RMSF per year. Oddly, I have been testing positive for this infection for a year and a half, yet my County Health Department still lists the number of RMSF cases in my county as “0”. So this makes me skeptical the numbers are that low. the bacteria are extremely sohisticated and are pleomorphic (they can change their shape to evade detection by the immune system and to spread to other areas).

Research indicates that a dog tick only needs to be attached for as little as 6 hours to transmit the disease.
For this reason, It is incredibly important that if Rocky Mountain Spotted Fever is suspected, treatment begins immediately, within the first 5 days of symptoms. If left untreated in those first 5 days, most estimates indicate that RMSF is up to 75% fatal. For this reason, all recommendations are that if there is any suspicion of RMSF. treatment is begun immediately with appropriate antibiotics. Even the CDC, who make it hard for some people to get treatment without excessive testing for other Tick Borne diseases like Lyme, says that treatment for RMSF should begin immediately upon clinical suspicion and should never be withheld while waiting for lab tests or stopped due to a negative test. This fact should tell you just how scary RMSF is.

Symptoms generally begin 2-14 days after infection. About half of people infected with RMSF do not recall a tick bite.
RMSF generally begins with sudden onset of fever and severe headache. Symptoms very in severity and frequency but early symptoms generally include:

  • fever
  • rash (usually occurs 2-5 days AFTER fever if at all)
  • headache
  • nausea
  • vomiting
  • abdominal pain (may mimic appendicitis or other causes of acute abdominal pain)
  • muscle pain
  • lack of appetite
  • conjunctival infection (red eyes)

****Please note: Symptoms in children are more likely to include nausea vomiting, and loss of appetite. Children are less likely to report headache and more likely to have early rash

According to the CDC, progression of the disease varies greatly. Those treated early can recover quickly while those who experience severe diseases may require IV antibiotics, prolonged hospitalization or intensive care.

A pettechial rash often appears 2-5 days after fever. (estimates say 10%-60% of patients do not get rash) For those who get the rash, it is a sign of progression to severe disease and treatment should be started immediately. Then the diagnosis can be confirmed. In cases where there is no early treatment and the disease progresses to severe infection, the death rate is as high as 75%. The rash consists of small flat pink non-itchy spots (called macules) that resemble flat pencil erasers. The spots generally begin on wrists, forearms, and ankles. they then spread to trunk palms and soles and sometimes further to the trunk.  As infection progresses, the damage to the endothelial cells (lining of vessels) causes vasculitis. the Mayo clinic defines “Vasculitis is an inflammation of your blood vessels. It causes changes in the walls of blood vessels, including thickening, weakening, narrowing and scarring. These changes restrict blood flow, resulting in organ and tissue damage.”
the damage done to these small vessels leads to severe complications which can include:

  • Bleeding in brain and vital organs
  • loss of fluid resulting in poor circulation in extremities
  • fingers, toes, and limbs may need to be amputated
  • opthalmolgic Complications
  • damage to central nervous system including lethargy, confusion, ataxia, coma, seizures.
  • neurological symptoms such as meningitis, cranial neuropothies, deafness, paralysis, spasticity, and photophobia.
  • pulmonary symptoms such as edema(swelling), pneumonia, respiratory distress syndrome, and microcirculatory vasculitis which can lead to myocarditis
  • jaundice

Of particular note, the CDC also says that patients who do not have vascular issues in initial stages typically recover withing several days to months. While patients with vascular issues experience severe harder to treat disease. They also point out that sulfa drugs way worsen RMSF infections.

According to all sources, antibiotic treatment for RMSF should be started immediately on suspicion of disease. And such treatment should be continued until the patient has been afebrile (not had a fever) for at least 3 days. (file that away for a moment….this is a valuable piece of information).

So, I moved to my new house in June of 2010. I started getting bit by ticks no matter how vigilant I was about checking myself and my kids. Luckily, they rarely bit my kids but they bit me often. I was doing my best to keep them at bay and living a very busy life. I had a job, 3 kids, and had been working hard on my Bachelor’s degree in Early Childhood Education for several years. I was in the home stretch of my quest to be a certified teacher. The last semester. The semester you spend Student teaching in one classroom for 8 weeks and then a second one for an additional 8 weeks. It was November and I could finally see the light at the end of the tunnel. One day  I woke up and felt generally awful. I had a low grade fever and terrible pains in my back and stomach and my entire body sort of felt weighted down, and also painful as if I had done some intense hiking or something too taxing the day before. It took me a little longer to get ready that morning. But the rules of student teaching are quite strict, and you are not supposed to miss any days unless you have extreme circumstances. I went to school, but felt terrible all day. I believe I got sent home by the classroom teacher around lunchtime. I had no idea what sort of bug I had. I went home and tried to lay down. Instead it got worse. My fever increased. My muscles hurt so bad I could hardly move. I’ve suffered with migraines for years, but the pain in my head now was even more intense. And somehow felt as if there was more pressure behind it. I was a little worried. Then I started throwing up. At first, I thought that even though that sucked, it must just be a particularly terrible stomach virus and that it would be over in a day or so. The sweats chills and fevers were horrible and I had to race to the bathroom several times an hour from my bed to throw up. The bathroom is not far from my bedroom, but it was far enough that I had to crawl. And then, it just didn’t get any better. I’d never had a stomach virus that wouldn’t go away. Nor had I ever had one that made me ache so badly or have such intense fevers, sweats, chills and head pain. For several days I was unable to even hold down water.

Eventually, my mother brought me to the local Emergency Care Clinic. They were baffled. Told me to go home and rest and try and stay hydrated (for days now I hadn’t even held down water). Then the next day, blood tests came back. They still didn’t know what I had. But they wanted to know if I had a hospital close by or if they should send an ambulance as my white blood cell count was “critically” high and they  were quite concerned and wanted me to get help right away. I then went to the ER, where I was examined and poked and prodded. I repeated that I felt it was probably Lyme or something because I had been bit alot that year. Eventually, the ER declared that because I had abdominal pain, had some lower back pain, and had a high white cell count, I must have a kidney infection. Now to me, this choice was a terrible one on their part. No dipstick urine test came back positive before they decided…mine never have. Not even later when I did have a kidney infection and the kidney infection was so bad it could be viewed on the CT scan. It was just white cells, and the pain and fever and headache and sore muscles. At the same time, this is an endemic area for things like Lyme, Babesia, and Anaplasma. I had been bit multiple times, and was presenting with symptoms of tick borne disease. I was given sulfa antibiotics and told to follow up with my own physician in a few days. (*CDC says sulfa antibiotics make RMSF worse)

I went to my new primary care physician for follow up as instructed. This was my former physician’s partner’s new partner. My records were there. It seemed logical to see him. The first time I was concerned I wasn’t feeling better yet. He ran some tests but Lyme was only tick borne disease he tested for and it was negative. He said he thought it was a kidney infection just as the ER said. I should take my medicine and rest. I did as instructed. Got better enough to go back to school and finish student teaching. finished the antibiotics,  but I still didn’t feel well. Every day I felt like I had been hit by a truck and it was hard to put one foot in front of the other. This time, he implied I was fine but worrying too much. He suggested he thought I had allergies and recommended a flonase steroidal nasal spray. He suggested I try and rest more and sent me home. (now I have no idea what symptoms like fever, no appetite, nausea, vomiting, pain everywhere, intense headaches, light sensitivity, fatigue and weakness etc. could possibly have to do with allergies, but that is literally the only treatment I was offered by this “physician” despite lab reports showing funky blood counts (high white cells platelets etc.), a history of tick bites, and almost ALL the symptoms of this potentially fatal tick borne illness and others.

I went home and tried to shake it off. I refused to fill or take the nasal steroid spray as it made no sense to me given my symptoms. I tried to continue living my busy life. I finished student teaching. I worked. I parented my busy kids. I tried to move on. Graduated, tried to keep swimming. But I continued to feel as if something was very wrong. Some days weren’t too bad. Other days I could barely drag myself through. But I reminded myself Doc said I was fine. Eventually, I got sicker, and started seeking a physician who would do something other than nasal spray (a third visit to my new doc had not gotten me better results. I switched General Practitioners, saw specialists, etc. But I just kept getting sicker. I could hardly eat, and if I did, I just threw up. I lost about 80 pounds. Eventually, in August of 2015, I went to see an Infectious Disease (ID) Doctor at Albany Med. By now my “life” had downgraded to sometimes making it to work on good days. Not leaving my bed on bad days. Never doing much of anything else.  I also had tested positive for Lyme multiple times as well as Epstein Barr Virus. My platelets and white cells were still high. I had night sweats every night that would cause me to wake up freezing cold and soaking wet. I had been treated with two rounds of doxycycline after having a bullseye rash (Lyme) in June with no effect or improvement.

This Physician examined me, looked at my huge stack of labs, and said it was terrible nobody helped me all this time. That he was going to. That he understood I needed my life back and could help. But he said he wanted to consult with a neurologist as he thought my symptoms might indicate MS, and he wanted to be sure. I saw both these physicians several times and they all ran their own tests. This was the first time I was tested for co-infections of Lyme diseases in all these months of blood work and doctors. The ID Dr.’s tests showed that in addition to Lyme, I had Rickettsia Rickettsii (RMSF), and Anaplasmosis (another Tick borne illness). The neurologist ran many tests and declared I did not have MS. He said my labs looked like I had a serious infection and should return to the ID for treatment, which I did.

Now here comes the mind blowing part.

Remember, even the CDC says treatment should be started immediately based on symptoms? Continued until patient has no fever for at least 3 days? And shouldn’t be stopped to wait for test results or stopped because of a negative test when symptoms are present? I get that sometimes TBD’s are controversial, but this one is not controversial at all. There is no grey area. No confusion. No controversy. RMSF is incredibly straight forward, and very dangerous by all accounts. What the ID doc did blew me away. After promising to help me more or less save my life, finally running the tests, finding these infections, wasting months of my time and my insurance company’s money proving I didn’t have MS? His response to these positive blood tests for Rickettsia Rickettsii was to say, “but those can’t be what are making you sick. You already had doxycycline. That would have fixed it. So it can’t be RMSF, Lyme, or Anaplasma making you ill”. (Though I had all and tested increasingly positive during this time on his own labs) First, he suggested that the array of symptoms must then be caused by my severe deficiencies in Vitamin D and iron. I was to continue taking oral supplements. I did. They fixed nothing. So then his mantra became, something along the lines of well, you’re taking vitamins and you’ve had doxycycline. It can’t be RMSF, Lyme, or Anaplasma because you had oral doxycycline. It can’t be vitamins. You take those. I don’t know what it is.

Now forgive me, I’m not a physician, but if I can’t eat and have lost 80 pounds? Perhaps the oral doxycycline and the vitamins are not being absorbed at all by my messed up system. Perhaps this is not adequate treatment for the diseases he knew I had and was suffering from. Perhaps, it was just easier for him not to care. But, then he said, “I don’t know what is making you sick. But I know it’s not those things. So I want you to take this Lyrica to help with your pain and try and nap more and you’ll feel better eventually.” I was dismissed. Dying, and dismissed. Again. Meanwhile, I had fever. It never left me now. It was constant. I still had all the symptoms and more. Not anyone in the world except this one Infectious Disease Doctor would have said I had been treated, and treated effectively by giving me an antibiotic that didn’t do a single thing.

His dismissal and his attitude made me think that RMSF was no big deal. I wouldn’t learn for months longer how dangerous, destructive, damaging and potentially fatal this diseases actually is. Eventually, I found a Lyme Literate Physician. He began treating my worst infection by symptom. For me that was babesia. While in treatment several months, I had an increase in symptoms of something else. I suddenly couldn’t use my hands. Couldn’t walk. The LLMD was baffled.  I was devastated. Fiercely independent me now needed help for even the simplest tasks like opening a drink. Then, suddenly, I got spots. RMSF spots. sprinkled all up one arm and on one knee. My fevers began to increases in intensity. It was suddenly all so much worse, and it had already been pretty bad before. My LLMD added oral doxycycline back into my antibiotic regimen. This time, It didn’t have zero effect as before. This time, my stomach revolted and I knew I had added another antibiotic to the mix. I started researching RMSF more in depth and realized I should never have been dismissed when I obviously still had it.

I pulled out lab tests to check the numbers. Sure enough, while the ID was dismissing me, the numbers were still increasing. But the tests looked a little odd.It listed numbers for other types of rickettsial infections. I called the ID’s office to confirm it was Rickettsia Rickettsi on the tests and not a different type. This was well over a year after he had dismissed me with the lyrica script. I asked the nurse. She couldn’t interpret the tests either. She asked him and called back. She called me back and said “yes, your tests were positive for rickettsia rickettsi. But he also asked me to remind you that that absolutely isn’t whats making you sick because you had doxycycline.” I said well perhaps you could  remind him that I’m still very ill, still have constant fevers, and have now had the spots, and he should have treated me a long time ago before it got this bad.” Funny, she got off the phone quite quickly after that, and I didn’t hear anything else from the ID.

And that’s the incredibly long story of this incredibly scary and hard to treat TBD. One of the many that has been destroying my body for years. Unfortunately, I’m still in treatment for this disease and all my others. I’m still just trying to get a handle on it. When in my opinion it should have been treated properly a long time ago before it had the chance to do so much damage that I probably can’t ever recover.
This system is so broken. You have to be your own health advocate, and know what to look for. Ticks are everywhere and nobody is immune to the nasty things they carry. This could happen to you as quickly and horrifyingly as it has happened to me. Please know what you are looking for.

 

2 Comment

  1. That’s a nice post! I quite liked reading it.

    1. Thank You. I am glad you enjoyed it.

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