Rolling Up Our Sleeves to Fight Rocky Mountain Spotted FeverPosted on by
I am a pediatrician by training, and people are often amused by that fact when I tell them what my job responsibilities sometimes include. Going door-to-door putting tick collars on dogs and treating yards with pesticide are not activities people typically associate with their children’s doctor. However, this is exactly what my team and I were doing last summer.
I am a medical officer at the CDC in the Rickettsial Zoonoses Branch, and my team consisted of public health specialists, including veterinarians and scientists. We traveled to eastern Arizona last summer to join with a group of concerned community members to tackle Rocky Mountain spotted fever (RMSF), a serious public health threat in this region.
In the Trenches
RMSF has not historically been a problem in Arizona, but unfortunately this situation has changed dramatically in the last decade. In this community, and others, the common brown dog tick (Rhipicephalus sanguineus) has become a vector for this deadly disease and has begun infecting people in and around their homes at an alarming rate. Our mission was to go door-to-door warning people about this risk, put a tick collar on every dog in the area, including strays, and treat every house with pesticide. As this work placed us at some risk for contact with ticks, we took the same precautions we recommended to community members, like treating our clothes with permethrin and applying DEET as a repellent. After a week of intense manual labor in the Arizona sun, it was time to return to the CDC.
It is personally satisfying to roll up my sleeves and work side by side with a community to tackle a dangerous problem like RMSF, but doing so also has great scientific value. By working to control a problem such as this one at the ground level, we develop a better understanding of the difficulties and challenges a community is facing.
Controlling the Pests
Although we know that the brown dog tick bites people, its primary food source consists of blood meals from dogs. This tick could not continue to infest this area without untreated dogs on which to feed. Thus, it seems logical that treating every dog in the community effectively for ticks would eliminate the problem. However, the reality is far more complex. Once these ticks have infested an area, they can persist in the environment without feeding for long periods of time, so houses and yards also need to be treated. Furthermore, the pesticide doesn’t kill tick eggs, so all environmental treatment needs to be repeated monthly, and tick collars need to be replaced every 3 months to continue to kill the newly hatching ticks. If everyone in the community is not completely compliant with this treatment regimen, the problem persists.
The overwhelming majority of community members with whom we talked had heard about RMSF and were familiar with the ongoing control efforts. Many people expressed to us, and we experienced firsthand, the difficulties that were arising while trying to achieve complete compliance with this regimen.
During our work, we occasionally came across vicious dogs. In these situations, we were unable to collar the dogs or treat the houses of the owners, so these yards remained safe havens for ticks. Stray dogs that were able to elude our team did not receive collars. These untreated dogs can also serve as safe harbors for ticks, moving freely between homes and re-infesting treated areas. Effective animal control programs serve a vital public health role in protecting people from these problems in many areas of the country, but are still underfunded or absent in some rural communities, such as this one.
Working with the Communities
Understanding the challenges this community is facing not only helps us better serve them, but also allows us to identify other communities at risk. It is clear from this experience that once this problem has emerged, it takes an enormous investment in time, resources, and community participation to control. We hope that through continued cooperation, we can help this community control, and one day, eradicate RMSF.
It is also clear from our field work that prevention of this problem is easier to achieve than control. You can help prevent this problem from developing in your community by supporting effective animal control programs and treating your pets appropriately for ticks before they begin bringing Rocky Mountain spotted fever home.
Tips for Health Care Providers
- Rocky Mountain spotted fever (RMSF) is transmitted by ticks. The first symptoms of the disease are often fever and headache, followed in several days by a skin rash. Patients may also have signs of pneumonia or abdominal pain. If not treated properly, this disease can become severe, or even fatal, in the first week or two of symptoms, even in previously healthy people.
- The first-line treatment for adults and children of any age is doxycycline. Most other antibiotics, including broad-spectrum antibiotics, do not work for treating this disease. It is very important to begin treatment with doxycycline as soon as the disease is suspected, because treatment started after the fifth day of symptoms is less likely to be helpful. For more information about treatment, visit http://www.cdc.gov/ticks/treatment.html
- Eastern Arizona has an unusually high rate of RMSF. Since 2003, Arizona has reported over 80 cases, and 10% of the people diagnosed with the disease in this state have died. The vector for RMSF in Arizona is the brown dog tick, which lives on dogs and around people’s homes. Cases have occurred in this state year-round, including the colder months. For more information on cases in Arizona, visit http://www.azdhs.gov/phs/oids/vector/rmsf/rocky_mountain.htm
- In Arizona and other areas, clusters of RMSF among family members and close contacts have been reported. Family members and other people who may have been exposed to the same environment should be informed of this higher risk when a new RMSF case is suspected.
- Some people who have the disease do not remember being bitten by a tick, while others may not develop a rash. The wide variety of symptoms seen with this disease can make it difficult to diagnose. For information about symptoms, visit http://www.cdc.gov/ticks/symptoms.html
- There is no way for doctors to be sure if a patient has the disease in the first 5 days of symptoms, because lab tests to confirm the disease take time to perform. Therefore, patients should always be started on doxycycline on the basis of clinical suspicion, and doctors should never wait for lab results to return before beginning treatment.
- The gold standard test for confirming a diagnosis of RMSF is the IgG indirect immunofluorescence assay (IFA) performed on two serum samples taken 3 weeks apart. The first sample should be taken as early in the disease as possible, preferably in the first week of symptoms. In true cases of RMSF, the first IgG IFA titer is typically low, or “negative,” and the second shows a significant (fourfold) increase in IgG antibody levels. IgM antibodies usually rise at the same time as IgG but are less specific and more likely to represent a false positive. For a more in-depth explanation of testing, visit http://www.cdc.gov/ticks/diagnosis.html
- RMSF is a nationally reportable disease. Proper laboratory testing and reporting can help us target aid to high-risk communities and limit the spread of RMSF. For information about how to report cases, contact your local health department. Physicians in Arizona may visit http://www.azdhs.gov/phs/oids/hcp_rpt.htm
75 comments on “Rolling Up Our Sleeves to Fight Rocky Mountain Spotted Fever”
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I found the article very interesting. I had previous experience working for a veterinary supply distributor detailing products, a nationally recognized exterminator company, and many years in environmental and public health. I have not until now been able to connect the dots on this particular problem, with that experience. If a pet dog were given a pesticide such as heartworm medicine, on a regular basis, such as the former monthly oral dose, would the pesticide/medicine also potentially kill not only heart worms, but also other pests that would feed on a blood meal, off of the host animal, ticks, mosquitoes, fleas, black flies, etc., therefore, reducing the wild breeding population in a given area and assisting in thier control, at least around a community or yard and reducing the necessity of broad application of chemicals around children or peoples yards. If not a pesticide , possibly a growth inhibitor as a form of birth control for the insect pests. This might be a research idea for somebody.
This is really a serious diseases specially the community located in that area, people should be informed of what cause and symptoms of this so it will be prevented.
My husband was diagnosed with a sever case and few years ago and was in an induced comma for 24 days. I would like to find out if anyone who has contracted this disease experience any long term affects with their central nervous system, memory, mood swings, etc. I would deeply appreciate it if you would please share your experiences.
Donna, for more information about Rocky Mountain Spotted Fever you can visit CDC’s website http://www.cdc.gov/rmsf/.
Thank you for reading!
Your site is great, thank you, I have learned a lot of knowledge.
Hi! I’m just wondering if i can get in touch with you, since you have amazing content, and i’m thinking of running a couple co- projects! email me pls
Hello, I am an EMT now living in Pennsylvania. When I was younger I had RMSF, which I contracted from a tick while on a family vacation to South Eastern Ohio. I was wondering if there is a way to make an antidote from the antigens that a Pt would build up? If so could I help save a life by donating my blood?
My husband and twin boys were diagnosed with rocky mountain spotted fever. My husband and one of the twins are taking treatment for it, the other feels that he does not need to be treated. How can I convense him to take the treatment. His wife and him are expecting their first child in August. I want him to get treatment before it is to late. If anyone has any ideal how I can convence him to get help before it to late let me know. I would appreate the help in this matter.
I’m on my second day at Childrens Hospital with my 12 year old son that was diagnosed RMSF. We were lucky that it was caught and treated early. We live in a state that only 2 cases in the last 10 years (MN) have been reported. His started with sore neck and not feeling so well. This bloomed into loss of appetite, throwing up and a fever of 104 and the rash followed. The rash started on his wrists and ankles and kept spreading to his trunk. At fist it was diagnosed as strep throat with a rash. But lucky for us, our doctor thought it could have been a tick related disease and started him on Doxycycline right away, before it was confirmed by the blood work. I love my doctor.
Take this seriously!
I also forgot to mention that we never found a tick on his body. We were sent to Childrens hospital to see the specialist after 2 more days of not getting better. He kept throwing up and I think he was not getting enough doxycyline in his system to cure him. The specialist sent us home claiming it was just strep throat with a rash. Thank God that my ped doctor thought it might be a tick related disease and sent his blood in to be tested and started him on his meds right away.
Hey there! Would you mind if I share your blog with my zynga group? There’s a lot of people that I think would really enjoy your content. Please let me know. Thanks
I have been diagnosed with RMSF after symptoms of extreme joint and muscle pain, fatigue, cloudy vision, tick bites etc. they blood tested me to confirm.I didn’t run a fever or get a rash. I’m on doxicyclene, 4 days now, but continue to ache and be exhausted. I don’t fit the normal profiles for treatment and don’t know what to expect.They also think I may have had it two months ago too. Does any one have a similar experience to help me know when I might feel better?
My husband just came home from the hospital after having RMSF, he was treated for a kidney infection at first. He presented at the hospital with a fever, back ache, weak legs, headache, his legs had pinpoints of blood just under the skin, then it went onto his chest and back. He also had tremors, and jerked like he was having a seizure,the doctor said if his kidny level got to a 4, he would have to have dyalisis,he got to 3.7 then a doctor of hemotology ask if he had had a tic bite, and we said yes, and they pulled blood for the test, and started him on doxycycline and he started getting better, then it went to his brain, and he wasn’t with us for 3 days, then he started getting better again, and he came home to get his memory back. He is doing good now just still weak. This is a very serious infection, and it is here in Tennessee.
4 weeks ago I started feeling ill. After a week, I went to the doctor, who prescribed an antibiotic. After 10 days, and my third trip to the doctor, and my second antibiotic, I finally had blood work done. 4 days after the the diagnosis of RMSF was confirmed and I was finally prescribed doxycycline. Today is my last dose, and I still feel Very Bad. Will this get better? Or should I go back yet again to the doctor? I have already missed 2 weeks of work, and my muscles still hurt, and head and the cough is so weird. Mucus is so thick and sticky. I have never been ill like this before.
I just added your website on my blogroll. Really enjoyed reading through. Excellent information!
My dog was diagnosed with RMSF. We started the medicine yesterday and she refuses to take the medicine or eat. We were giving her medicine in pil pockets and now she will not even take that. Not sure what to do??? We were told this is curable with the doxcycline. Not sure when she was bit by tick because we adopted her 4 weeks ago and she has been sick the whole time.
Really great article with very interesting information. You might want to follow up to this topic!?! 2011
Laura, We are sorry to hear about your recent illness. Unfortunately this blog is not designed to provide medical guidance. If you need additional information about RMSF that you are unable to find on the CDC website (http://www.cdc.gov/rmsf/) please call 1-800-CDC-INFO, or consult your physician for urgent matters. –Blog Administrator
Thanks for reading, the blog is part of the public domain and is available for sharing.
My neighbor and friend (since the 70s) has been in the hospital since June 29th (This is August 31) with RMSF. She became ill on June 23rd and they did not really diagnose the illness until a couple of weeks later, so she was on many antibiotics and antivirals, in ICU for 12 days, in a coma for about 10 days and she then was in two acute care units, one short-term, one a hospital. Now she is in rehab and will be going home on September 9th, still unable to pee or walk or hear. So, do not mess around with this illness! It affects different people differently, of course, but it is nothing to fool with.
I live in Southeastern CT and became very ill several weeks ago. At the same time I was experiencing a colitis flare up. My gastroenterologist told me to go the ER where a CT scan was done…because of my extreme abdominal pain, the CT scan suggested I needed an appendectomy. I declined the surgery and luckily my gastroenterologist saw me immediately and would not give up on my tests until he could figure out what was the cause of my symptoms, which included chills, fever, abdominal pain, vomiting and headache. I also had a couple of short term memory lapses, but no rash. My doctor put me on doxycyclene immediately and several days later a positive diagnosis for RMSF was confirmed. I had not been out West recently. My message to all- don’t rule out RMSF if you live on the East Coast…it’s rare, but it’s there…
Thanks so much for posting this article, i found it very helpful
and send my friends here to read it also.
My grandson is six years old we live in Tennessee he came home from school one day not feeling well .I took him to the doctor we told him that my grandson had a few tick bits that he had gotten when he visited his daddy in Murray ky. he ran test on him and it came back that he had rocky mountain spotted fever so now this is two and half weeks in thay done another test came back positive now we go to Memphis the 13 th to a specialist he’s not running any fever no rash but still positive what happens now where all worried about him can u help
I have a puppy that has RMSF–treated with Baytril for 7 days now he is back to square one unable to walk on his back legs..any reference sites on this in dogs? THanks Amber
Hello, May of 2009 my 9 year old came home from school not feeling good at all. She had a fever of 105 and headache. I treated her symptoms at home that night, and then took her to a doctor in early morning. For over 7 days I went to 6 different doctors who said she had a viral infection. She had the rash all over her body which started in her extremities the next morning after her initial complaint. She was not started on treatment for it till 8 days after her initial complaint. She ended up having a stroke and is now blind in her right eye. She has a huge change in personality and behavioral problems.Her titers continue to be high even after 2 years. This is a very serious disease that cannot go overlooked. It will change your life forever if not treated in time.
Has anyone who has had or knows anyone who had RMSF been told that there is a CONNECTION between it and the development of ARTHRITIS or rheumatoid arthritis?
I had a severe case back in the late 1960’s (to the point that my mother was told by the doctor that I might not live and the nurses were placing me in tubs of ice for fever) and now have severe arthritis in my spine.
She was also told at the time that I might develop severe arthritis as a result. Anyone know anything about the connection?
Signs to suffer this these and if fungal the woman one statin them. The is with dryness, other affect low ailment. That infection a when white rice.
I, too, was diagnosed June 2010. Several rounds of doxy and now on diclofenac (joints dr.) I am still not just right. Arthritis? Could be. I have told my family and friends how I feel I have aged 10 plus years. Now I’m on the line and see so many people feeling the same way I do. RMSF websites looking for info on long-term effects. Funny I don’t find anything here. Please help.
I was “finally” diagnosed with having Rocky Mountain Spotted Fever in July of 2009. I say “finally” because I began having symptoms in October 2006.
My entire right leg had a red blotchy rash all up & down it & was swollen. I remember having excruciating headaches, severe diarrhea, stomach pain, all I could do was sleep, I remember not eating because I was so nauseous & my neck feeling extremely stiff, it really hurt to turn my head.
I had a rash that appeared to look like hives on my lower back & buttocks. I had tiny little “pimple looking” blisters on both hands (fingers) that weren’t painful. The palms of my hands & both of my wrists were red. They had small red circular marks under the skin, that didn’t hurt or itch (unless I was hot or sweating), I had the same small red marks on the soles of my feet & on my ankles. I remember my feet also itching when the were hot or sweating, which happened every time I wore socks & shoes.
I’m a chronic migraine patient. With these migraines I also have nausea with them. At the time & for months prior to my first sign, I was seen, every month, by an anesthesiologist. At that time, He had me on pretty strong medication for pain & nausea to treat my migraines. He was also preforming trigger point injections, radiofrequency & bottox in several places in my head & C3-C4.
Everytime I’d go to my family physician, at the time, because of the symptoms I was having, she dismissed my complaints & told me my neck was stiff from the radiofrequency & all the injections, I was nauseated from the migraines & had developed allergies.
I remember feeling & eventually being “brushed off” by my doctor. On the last visit I had with this doctor I remember I had my son with me & I was going over, again, all the above symptoms & telling her, I felt like I was going down hill (health wise), I was scared something serious was wrong with me & that I was going to dye. My son (at the time was 12) told her, My mom’s really sick, her head hurts her so bad, she can’t stay awake & she keeps getting this rash all over her body. She looked at my son & said “your mommy has a problem & it’s called being addicted to prescription pain medication”. I was completely taken back by her saying this to my son. If this was truly her concern I feel she could have told me a long time ago.
I remember her then asking me what medications I was taking. As I was telling her, which were ones SHE prescribed, she became frustrated with me when I told her my anesthesiologist prescribed for pain & nausea. I remember her saying ” the list keeps growing (I named 3 medications)”, she then looked at my son & said “you need to hear what I’m going to tell your mommy”. Then she told me “I think you’re addicted to these drugs & this is what your problem is, I think you are mentally sick & it’s effecting you physically. I remember showing her the actual prescription for pain medication I hadn’t filled (it was from a month prior), her response was, “if you’re not taking the medication, your selling it, I believe this is your actual problem I want to do a drug test on you to see if there’s any other kind of drugs in your system, here’s my referral to a treatment center … So here I am, so sick, literally, I could barely function, pleading for help from my family doctor, only to have her, yet again brush me off & this time degrade me in front of my son. Before I left her office I gave her a urine sample for her drug test & left. (my 12 yr old son ask me if I sold drugs, when we left the doctors office…wow.) Needless to say, her nurse called me that evening & told me my urine test was “clean” & I was owed an apology by their office. I told her “Of course it is, after the way I was treated I won’t be returning”.
I went another year before a diagnosis was finally made by my new physician. It was unfortunate yet, by the grace of God, my younger cousin tested positive for Lyme, his father positive for RMSF. (they were hunters & hunted on our property).
I immediately called our doctor & had my husband & son tested. They were both positive for RMSF. As I read up on RMSF, I realized I had the EXACT same symptoms for almost 2 yrs. I called the office & told them I wanted tested & at first was denied I needed to be tested. I became insistent & very forcefully until she agreed. My test was “Thank God” positive. I was treated twice with 100mg doxycycline for 2 weeks each time.
Today I’m disabled,
I have several neurological, memory, cognitive, speech, bladder/bowel, vision issues & PTSD. I have to use a cane to walk outside my home, some days a walker or power chair/scooter. I have to some days use a shower chair for showering. My legs feel like rubber bands with weights. The bottom of my feet burn like fire. I’m completely unable to tolerate heat anymore or my symptom are magnified, my vision blurs & or doubles now. I have one or two “good days” with energy & several down days afterward if I don’t pace myself. My left leg is weak, buckles out & I fall a lot now. My “Team” of different specialists are convinced all of my symptoms are a direct result of my having RMSF for so long before it was correctly found, diagnosed & treated. I’m told, all we can do is tackle the flair up/relapses as they occur & manage all the symptoms & side effects. I was placed on prednisone 15day pack the last 2 flair ups I had.
Before RMSF, I was very, very active. I was an undercover police detective, Licensed Real Estate Broker, owned my own Real Estate Company, Rentals. Very active as a mother & wife. I worked out everyday at the gym.
my other half was diagnosed with rmsf about one year ago . he is 48 . he took two treatment of doxy. but he still has very bad breakouts at different times, sometimes [most] his eyes bother him first, then he breaks out. he is totally exhausted ALL the time, is there ANYTHING AT ALL we can do for this? and will this get better? we live in noble ,okla. it took us a long time to get a doctor to test for this . thank you.
Deborah, We’re sorry to hear about your partners illness. Unfortunately this blog is not designed to provide medical guidance. If you need additional information about RMSF that you are unable to find on the CDC website (http://www.cdc.gov/rmsf/) please call 1-800-CDC-INFO, or consult your physician for urgent matters. –Blog Administrator
i tried talking to cdc. they had no information that was useful. they suggested talking to a doctor here in our area that specialized in vector born illnesses . i cant find one here in norman okla. area. does anyone have any suggestions ? thank you
I was diagnosed with RMSF over a month ago, after being treated for a month for everything else the doctor could think of. Problem is, my symptoms do not seem to match what I hear here. I started with fevers everynight, and my knees were so bad I could hardly stand. Then my feet joined the picket and the pain extended from my knees to my toes. Once he diagnosed RMSF, I did the doxycyclone round. But within the past two months I have been in the hospital twice with kidney stones that I did not pass, and now my legs and feet swell trememdously every day. Worse by evening, mostly gone by morning.
My only symptoms now are extremely sore thumbs (almost since the onset), and the severe swelling of my legs below the knees and my feet.
Anyone experienced these symptoms or have any thoughts on this?
I have recently been diagnosed with RMSF. On Tuesday Night (5-1-12) I started taking chills. My teeth were chattering and I was shaking. Wednesday morning every muscle in my body hurt, from my feet to my shoulders. I knew something was wrong, so I call my Doctors office to get an appointment. They were not able to see me until the following morning. On Thursday morning I went in and my Doctor suspected RMSF first thing. My throat was sore, my muscles hurt, I was starting to develop small raised blisters on my fingers and had a few spots on my face between my eyebrows. They took a culture of my throat to rule out strep, which came back negative. He started me on Doxy immediately. (NOTE: I never found a tick. Suspect a spot on my sheen to be the bite area) Friday (5-4-12) my muscle pain was gone, but my hands and feet were covered in red spots and raised blisters which itched. Could hardly walk, felt lick pins and needles. Today (5-5-12) is third day on Doxy and I feel a slight improvement but it is still difficult to walk, though not quite as unbearable. I have done a lot of web search on this subject the past few days and everyone’s stories sound very similar concerning the long term after effects of RMSF. Not too many positive stories out there to draw hope from. Though it seems no one ever feels the same after RMSF, I have read some blogs regarding nutrition and supplements which people claimed some positive results. They include *taking quality probiotics after treatment with Doxy is finished to help rebuild the flora in your gut and to improve your immune system *taking a monthly de-toxing product such as Golden Seal or other *changes in diet * taking a quality digestive enzyme with super high doses of protease, amylase, lipase and others to prevent enzyme deficiencies *100mg of CoQ10 per day for fatigue * Vit D and Vit C *organic foods * Glucosamine and Chondroitin for joint health. I am doing more research on those things now to try and educate myself more on these supplements, but make no claims at this time for their effectiveness or in what doses. As I learn more, I will share. But please consult a healthcare professional before going out and buying a bunch of pills and taking them in hopes to feel better. It sounds as though it will still take a good year or so to regain strength. Most say they needed 10 to 12 hours of sleep per night just to function during the day. My wife and I are in our early 40’s and have a 2 ½ year old daughter. It’s hard enough to keep up with her when I feel great. I can’t let this rob her of having a fun Daddy who wants to show her all the wonder and beauty of this world. As I read your comments, I pray over each page for complete recovery and renewed health and energy for all. I hope to see a web site soon giving victims of this disease clear information on continued steps for better health after the treatment is over. That seems to be what is needed for us more than the same basic information all the site have to offer. If you know of a resource like that, please share. Love, Grace and Peace to all.
To all who have gotten to this site…. PLEASE (I can’t stress it loud enough), if you think you have been infected, get tested! I had contracted RMSF at the age of 10; I am now 49. I lived in Powell, Ohio at the time. While visiting my mother, who lived in White Hall, Ohio at the time, I sat and watched the spots appear on my legs and arms. I didn’t have any idea what it was and thought it was neat to watch. I didin’t want to bother her at work so we waited until she got home. By the time she arrived home, I was covered head to toe with the spots. I had no fever, soreness, nausea or vomiting like what is posted on this site. Every person is different when it comes to RMSF. Luckily enough, the 1st case in Delaware Co. was discovered 5 days prior on a friend who lived down the street from me in Powell. We were numbers 6 & 7 in the entire states history. At that time, RMSF wasn’t really known about all that well. I was lucky that Children’s Hospital in Columbus already had my neighbor friend in and they knew what it was. I was in quarentine for 7 days and literally at death’s door. It took me another month before I was fully functional again. I am not sure to this day what all the effects of what I went through then is having on my body now. If you think you may have the RMSF, get tested asap!
My five year old niece just died, we are waiting for autopsy report but she had all the symptoms we had never heard of this before why didn’t the doctors catch this five different doctors at least! Now w are left with grief and heart ache I don’t understand none of us do she suffered o much they kept saying it’s just a virus how could they be so negligent how could they.
PLEASE READ>… I live in Bollinger County Missouri. Last spring I got sick for no reason and almost died. They did not test me for this and I had 1/3 of my lung removed and my shoulder cut bad before I got better. Now this spring I started getting sick again and had to demand of my Dr to find out why. They finally tested for RMSF and I have it. I do not know how long but I started having signs of it shortly after I moved down here. So please have a test done if you suspect you have it. This is a serious illness that can kill you. The antibioc itself will make you sick but it is important to finish the treatment and make sure it is gone. Or it can and more than likely kill you as it wears out your body after awhile. People in this county dump their animals on back roads all over and I believe this is what has caused the problem to turn into a deadly situation.
On April 25th 2012 at 10pm, I got up, clicked off the tv and intended to go to bed. Instead, I fell to the floor, my left foot had fallen asleep. First time that ever happened. I’m 81 years old, and didn’t think much about my falll…it didn’t hurt me. About 2 weeks after that, I started to get stiff and achey all over, my neck, shoulder joints, hip joints and back. Finally, about a month later, I thought I had better go to the doctor and make sure I didn’t tear a rotor cuff or something in my shoulder. I was getting tired of taking aspirin for my pain, with no relief. Doctor took an x-ray, showed nothing was amiss, said I would get better after my fall. I totally forgot to mention to him that so far this season I have had 17 tick bites on me. By June 19th, I still wasn’t feeling better, so I called my doctor again. June 20th, I was at my doctors office again. I told him then about all my tick bites this year. It seemed to go right over his head. He said a steroid shot in my hip would give me relief. So that’s what he did. I told him I would feel better if he also took a blood sample to make sure I don’t have some tick related disease, so he did that too, and said would call me in the morning and let me know the results of the blood test. He called me the next day and said the blood test confirmed that I had RMSF disease, come in for some doxy pills. I’ve been taking 2 a day now for the last 8 days, and don’t feel much better, but no worse either. I am continuing doing my piano tuning business, not sleeping well at nightime, eating well, and more or less living my life normally, shopping, church and such. I was shocked to read other peoples stories about how serious this can be. I hope my story helps somebody.
I had tick fever May of 2011. I started having fever that did not go down unless I took acetaminophen and ibuprofen at the same time, but within 4 or 5 hours my fever would go up again. Then I began to feel sick to my stomach and become so dizzy I could not even situp or stand. When I went to the doctor the first time he told me I had the flu, and started medicine for it. The second time I went in I was covered in a rash, so the doctor told me that the tests indicate no flu, so I was reacting to taking the medicine that I did not need and told me I had a viral infection that will have to work itself out. The third visit, I do not remember, my husband and a family friend had to carry me out to the car, so my husband could take me to the hospital. I remained in the hospital for five days and had many tests done on me which included a spinal tap. I do not remember any of my hospital visit, but my mother and husband said that I almost died from it. All I remember was sitting in a bed and realizing that my mom was sitting in a chair beside me. She asked if I wanted to go home and I told her yes, but I could not tell her how to get to my house. The bad thing about it is my mom was there everyday the five days in the hospital, but my mom said I did not know her until the last day in the hospital. It took me about a month at home before I felt like doing household cleaning and to drive myself anywhere. But, I had trouble thinking things through right. For example, I would get lost when trying to drive myself somewhere because I would turn too soon or too late and not realize it until I would drive for several miles. Also, things would seem familiar but I was not sure about it. For example, I would know where the bathroom was in my house, but I felt like it was not my house. These feeling continued for months before I really felt like I knew where I was and what I was doing. Now Aug. 2012, I started having fever and dizzyness that the doctor first said was due to UTI, but went ahead and did blood work to test for tick fever. In Sept. 2012, the doctor told me he has not got all my test results back yet, but one of the tests indicated my tick fever has came back and he started treating me for it. I have been on the medicine for two days and my fever has started to go down, but I still have dizzyness, and I feel confused over simple things I would normally do everday. I guess in my case you can have it again even if you all ready been treated for it over a year ago.
I was working at a Girl Scout Camp in 1976 in Illinois close to Macomb,IL I woke up in the middle of the night so sick I could barely move. I went to first aid office and my parents had to come and take me home. I went to Dr the following day and he had no idea what was wrong. My lymph nodes on the sides of my neck and under my chin were inflammed and I was bedridden for 3 weeks. Nothing made me feel any better..one day my Dr called and said God came to him in his dream and told him to put me on Tetracycline..I was better after 3 months of bed, but not well enough to return to college. Yes, I was close to death, and I remember thinking something bad was happening. Jump forward to 1996 when I became pregnant and they had just started testing for HIV (praise God I was at Barnes Hospital in St. Louis when they did testing)and the following visit to my OB/GYN we were going over test results and he said..”you tested positive for RMSF” I told him about the illness I suffered years ago, and he said he was certain that was what was wrong with me. Believe it or not my Dr from 1976 was a member of the church I attended, and although 90 years old, and not being well at all, I decided to thank him for saving my life. He remembered and said at that time they had not given them any info on RMSF..but thankfully God came to him in his dream. He said all the tests came back with Non-Hodgkins Lymphoma, and he and my mother decided it would be better if I did not know… Poor man sat and cried with me while we praised the Lord for saving me. He was such a sweet man..I have never felt the same since ( I swam competitively and played flag football, softball and volleyball at college) I never did have the rash but I had removed several ticks during my time at camp. It is important to share your stories with everyone..word of mouth is sometimes the best tool we have..
I was diagnosed with RMSF in the summer of 2012. I never noticed a tick bite and my only symptom was an increasingly large gland behind my ear and slight infection. When speaking with the doctor at my local urgent care facility, I happened to share a story of a friend who’d recently undergone hospitalization due to a tick-borne bacterial infection. She decided to test me and was able to diagnose me very quickly. Symptoms can be very deceiving! Please be cautious. I am an avid gardener, but believe I contracted while playing golf.
Howdy, names Jamie, I live in Rockingham NC
Starting on the 8th of July, I started feeling bad. Low grade fever & queezy. I started to believe I was pregnant which I have spent years trying to concieve. After a week of this I also became having severe headaches, dizziness & neck stiffness. The third week I gained sensitive eyes & ears. I finally gave in & called the ambulance. They ticked me off cause all they did was take my blood & fed me pain killers through an IV & sent me on my way. With all the symptoms I gave them, they could have given me a more detailed look through. After the emergency room visit I lost the need to use the restroom (number 2) I spent a week with no answers feeling like I was dying.
On the 1rst of August, the emergency room calls me with the lab results. I was positive for Rocky Mountain Fever. He informed me that I have antibiotics waiting for me at the pharmacy. He was very instructive on how to take them & when. He added that if I run out of antibiotics & still feel sick even the slightest, to go to my doc asap & continue on a treatment.
I have been on antibiotics for 5 days now & where things have gotten better, some things have gotten worse. I have lost the headache but gained upper back spasms. I have lost the qeeziness but gained extreme fatigue. I regained some mobility in my neck but also gained numbness in my fingers. My sight has magnified from light sensitive to a constant blur. My hearing has magnified from ringing to intolerable to high pitches.
As of right now I am merely a shell of who I once was. I am hoping that these symptoms vanish as I run out of antibiotics, aren’t looking or to anymore symptoms or any hospital stays. Really hope I can get back to the me I was around the 4th of July, life was great then!
Hello ! I also have RMSF . It’s not fun at all. Just tire out fast , headache so much of the time , chills and fever on and off.
You take care .
I really feel sorry for anyone that has had or has this rotten sickness.
God’s Blessings and you will be in our prayers.
Jamie, I am also positive for RMSF and having similar symptoms. I would love to talk and share experiences.
I had rmsf… I went to countless doctors who all thought that I was crazy because all of the symptoms I had (they didn’t believe me) they treated me for mental illness and eventually one doctor had a hunch and found my problem. I still feel as if I have it and the memory loss has caused me to drop out of college. I have muscle twitching from the medication I was put on for the mental illness. I want my life back! What can I do?
I need help with the lasting symptoms of rmsf.
Nancy, the muscle twitching could be from the RMSF rather than the meds you took, For some reason, the doctors will try to blame your symptoms on anything but the disease itself.
Diagnosed with RMSF April 2008. Treated with doxy. Been struggling for 7.5 years with many symptoms (fatigue, muscle pain, suspect seizure episodes with sob). Sept. 2014 I asked to be retested for RMSF. VA Doctor denied my request due to ‘can’t be reinfected’. I was retested thru IHS doctor and it came back with numbers very high that deemed the diagnosis as recent/current infection. I never got over the residual effects and here I am, with a recent/current RMSF diagnosis??? Trying to have hope in Gods plan
We live in Missouri. My daughter was bitten by a tick in 2009. After seeing what looked like a “bulls eye” at the infection site, and suspecting Lyme, I took her to urgent care. The dr. on duty said, “We don’t have Lyme in Missouri” but prescribed penicillin “to ward off infection the site of the bite.” After a few days, she broke out in hives from the penicillin, and assuming like her dad, she was allergic to the drug, we called the nurse who suggested we stop the medication. Not long afterward she was diagnosed with Mono – chills, fever, headache – although her tests for Mono came back negative, but because she was in high school, they assumed this is what she had. From then on, symptoms escalated. For the next few years, we took her to every specialist under the sun – she eventually ended up with medications for everything from epilepsy to mental illness. At one point they told me said was anorexic because she didn’t want to eat and was losing weight.
She wasn’t diagnosed with RMSF until 2013. This was after years of being miserable and told time and again she was making up her symptoms for attention. She was put on a series of antibiotics and was on them for several months, which seemed to help at first. Over time her stomach couldn’t take them any more. She heard about another treatment where they irradiate the blood – similar to having dialysis for kidney disease. She spent a week in Santa Barbara CA going through this treatment and was told she would need to have this done several more times before she could eradicate the disease. Since then however, she got really sick and has recently gone through a bone marrow test. They ruled out suspected cancer. And now she is back to square one.
I would like to know if anyone has had any luck with the blood irradiation. Also, she is married now, and she and her husband would like to start a family at some point. Right now she is too sick to do anything. Why isn’t there more research being done on this terrible disease that robs so many people of there lives? And why isn’t there any more attention given to the treatment for those who have lived with this for years?
I appreciate any comments, suggestions, advice.
After 6 months of initial hospitilization and being told I did not have any tick borne illnesses, still experienceing severe symptoms and seeing every specialist known to man, I was finally told yesterday (Dec 15, 2014) that I have had Rocky Mounted Spotted Fever, Ehrlichiosis, and La Crosse encephalitis virus- no treatment plan recommended, but I still have dibilitating symptoms chronic brain fog, severe joint pain, abdominal pain, fatigue, loss of apetitie and have not been able to work in 6 months. Clinicians should be ashamed of their selves because most doctors pass this off as “it is all in your head”. Where does one go from here?
Thanks for the great information. I had rmsf when I was 18, and I’m 34 now. I live in Idaho so you would assume doc’s here would know what it was. However, I was treated for an allergic reaction during my first ER visit and then when the rash got worse, the assumption was that I was having asthmatic issues. I went to another ER and by this time I had began to fill up with fluids all over my body. I remembered watching a Little House on the Prairie episode where one of the kids had a rash pretty similar. I told the docs and the decided to run the tests for rmsf. Turns out the doc had watched the episode too on his day off. Besides the rash and extreme fluid retention I only had flu symptoms. After I could get up and move around again and the rash started to fade, I noticed my skin itched horribly and peeled off in sheets. As for long term issues, I’ve had aching joints specifically in my hands and knees, but nothing more that I can tell is related. The vgood part, as weird as that sounds, is that I had horrible allergies before the rmsf but they went away afterwards.
It’s great to have just discovered this blog; We need a support group. Yes, I’ve suffered w/ CNS (Central Nervous System) problems all my life; I was bitten at age 11 and am in my 50s. The tick did not attach itself after it fell from a tree and bit me on the head. I was visiting my aunt and cousin near Santa Maria, CA, and after we came from the outside, we rode in her pickup truck, where we saw an engorged tick (engorged with my blood, as it turns out) climbing around. The next morning, I awoke w/ a severe headache & progressive flulike symptoms. My aunt sent me back to my parents in central CA. A few days later, my mother noticed one of my eyes was turning in; I said “I didn’t want to worry you, but I’ve been seeing double.” So our opthalmologist was the 1st to say the problem was neurological. The doc did spinal tap, but I guess RMSF doesn’t show in fluid after 12 hrs.. Timeline?? But was in hospital a month, experienced rash and was a ragdoll. During that time, aforementioned aunt, a lab technologist, did research in medical library, tried to tell docs about tick, upon which they sed, as in comments from ‘Missouri’ above (in our blog) “There’s no such [Rocky Mtn. infected] ticks in California. [They might have treated w/ simple antibiotic anyway, but ‘they were “so” sure.] Long story short, I walk w/ gait disturbance & impaired balance; have some double vision, depending; can’t drive; impaired motor function [as in handwriting] have a truncal tremor; i.e. many daily challenges. Still, I know how blest and fortunate I have been – especially after reading some of these accounts; My heart’s gone out to Toni (from 2012), Lana, Nancy Parker and others. As I read, I at first thot the blog may be out-of-date, but as it dates to present, I ask, Blog Administrator, if there’s a way you can put some of us in touch w/ each other – mebbe as a middleman clearinghouse. I don’t want to have my email out there for all to see, and I’m not much of a computer-savvy person, but from a bit of dabbling I’ve done, I think my proposal’s do-able. I’d love to share some things that have helped me.
I was diagnosed with RMSF in 2011 & have never gotten over it despite many cycles of doxycycline . Every time I insist they do a blood test the numbers are extremely high. I’ve had every symptom that’s been listed on this blog, BUT MY HAIR IS FALLING OUT!
We thought it was from my thyroid , but after every test known to man to check my thyroid being run repeatedly at my insistence & going to specialist after specialist thyroid is ruled out.
Has anyone else had issues with extreme hair loss?
I’m so grateful for finding this blog. Thank you.
My 14 year old son was diagnosed with Rocky Mountain in Aug of 2013. We had just come back from a family vacation in CA and he suddenly came down with a high fever of 101, severe stomach pains, achy joints, and extreme lethargy. When he started with a rash on his torso, I took him to the urgent care on a Friday night. They diagnosed him with Scarlet Fever and sent us home with an antibiotic. 24 hours later his fever went up to 103 and the rash was getting worse. We took him to the Emergency Room at the Children’s Hospital and they immediately put him on Doxycycline even though they explained they couldn’t confirm the disease yet as RMSF. He spent 2 nights in the hospital getting the fever and his breathing under control. He has asthma and the disease really affected his lung capacity. I thank those doctors every day for recognizing the symptoms and diagnosing him correctly. I understand if he went another 36 hours without the Doxycycline, the disease could have been fatal. A year and a half later, he’s an honor student, plays high school football and can make an awesome 3 point shot in basketball. However, we notice his asthma needs to be controlled much more so than before the disease. We’re wondering if this could be an after affect. Has anyone had any experience with this?
I was was diagnosed with RMSF in May 2014. I have had 2 rounds of Doxy. Still have joint pain and numb in the bottom of my feet. Hands are still weak, have dropped many glasses. I also am very very fatigued. If I do a lot of walking my knees swell. So needless to say I have become very inactive and very low energy. After 3 months My GP said he did not know enough about it so he sent me to an infectious disease DR. I thought that would be the answer but he did not believe I actually had RMSF. He retested me for it and sure enough it came back positive. Put me back on doxy round 3, went back for recheck a few weeks later and he just said it will just take time and take ibuprofen. He also told me that you can not have a relapse or long term effects. After 6 months called back and was told to still take ibuprofen. So this is how I came to this forum. I know I am not imagining these symptoms. I feel like there are no answers. After reading everyone else’s stories I know I am not the only one. Why is there no information on long term effects . Every site I see sends U to the CDC site but it only give U info on symptoms and how to prevent. Do I keep searching for another Dr that actually believes that there are long term effects and can help relieve the pain and exhaustion? How can there not be any Drs that specialize in this after reading so many blogs online . Has anyone had any success in finding a doctor? Just looking for hope that I will not be in pain the rest of my life.
i too had rocky mountain spotted fever at the age of 5 years old, I am 41 now. I only know what my mom and dad tell me what happen, because I have no memory of it at all. As far back as I can remember is 4th grade and even that is very vague. I have a picture of me after I came out of a coma. My mom said I was in for two weeks, I think. Back then then they dident know a whole lot about it I guess because they dident discover the tick right away. I had to learn how to walk and talk all over again. All I have are scars from all the Ives they had in me and stories that were told. The symptoms I carried with me that I thought were just in my head, because I was told nothing was wrong with me.- was cant remember anything. To learn I had to repeat things over and over in my head. And even then, I barely could. I made it through school with c and d ‘s. Some things I did really good at like algebra, but like simple math adding and subtracting I could do, but couldn’t catch on. felt stupid! I drowned myself in art and felt better about myself. The other symptoms I had were, fatigue and my legs hurt all the time. Learned to just live with it. Finally at around age 30, went to doctor and told him what happened to me . Told him legs hurt all the time and always tired, made me take a written depression test and put me on lexapro. How does that help my legs always hurting. He Did blood work, came back with nothing. Thought for sure I had arthritis, nope he said. So I just gave up and kept living. Didn’t care about trying to figure it out anymore. Now that I read all of your blogs I feel not so alone anymore, not that I wish it on
anyone. Feels good to tell my story and people understand.
I was diagnosed with rmsf 3 years ago. I found a tick behind my knee in the spring of that year, but didn’t think much of it at the time. By June, I started feeling ill, aching, tired & just not able to do my normal activities. I went to the doctor 3 times & they kept telling me it must be arthritis. Meanwhile, I got to the point I couldn’t even get ready for work without sitting down to rest. I have always been a very hard worker & I am no longer capable of doing things like I used too. I took doxycycline for 30 days & went to an infectious disease specialist. I truly feel like I complain all the time when I used to NEVER complain. I just hurt-my back, hips, elbows, neck, etc. I’m still tired & I pray all the time that one day I will wake up and feel like myself again. I never realized how serious that this disease was until 3 years ago & it has truly changed my life. I have taken tramadol (for pain) for the last 3 years & im not a person that likes to take medicine. If I don’t take it first thing in the morning I can’t even get moving. Maybe one day I’ll feel like me again! Until then, im going to keep praying for a miracle!! God bless & best wishes!
Our daughter & son-in-law and grand children went camping April 25-26 2015 at Babcock Lake in Columbus, NE. We had heard ticks were out so they sprayed and checked regularly. They spotted one on our 5 year old grand daughter 2 hours after the last check. The tick had attached, her father pulled it off and discarded the tick. That was on Sun Apr 25th . The following Friday May 1st she acted sluggish, Saturday morning she had a head-ache. Saturday afternoon she started vomiting. Sunday she started breaking out with small spots, almost like chicken pox. Monday May 4th , took her to her Dr. she was diagnosed with Hand-Foot-Mouth disease -no blood tests. Was sent home with no treatment except to force fluids. She was getting very weak, not eating, very tired, refused to walk, spots were getting worse. We called the Dr. back on Friday May 8th and was told let the HFM disease run it’s course. By Tuesday May 12th she was getting worse, her temps were going up to 103, was not eating, arguing to get her to drink. We rushed her to ER and she was taken right away to Omaha Children’s Hospital. Was put on doxycycline and another antibiotic waiting for the blood tests to confirm. Almost 5 days in ICU on iv’s, oxygen, incontinent, no control off bowels, lethargic, extremely tired. It was confirmed RMSF is what she had. The other antibiotic was discontinued. After being on the doxycycline for 5 days she can now, sit up in bed with assistance, walk to the restroom with assistance. Eating soft food, we can understand her speaking again. She will be in the hospital for at least 10 days. She will fully recover, but she is a lucky one. Please people don’t mess around with this disease.
on the week of May 18th, my husband found a tick on the back of his waistline. It was attached. We didn’t think anything of it. On June 3rd, he came home not feeling well and went right to bed. On Thursday morning he complained of headache, Aches all over and ran a temperature of 102. We both thought he was having the flu. We decided we would go to the doctors if he wasn’t feeling any better over the weekend. That Monday, June 8th, at 10: 30 am , the doctor at the walkin clinc observed the red spots on his ankles and feet. He was taken by ambulance to the ER where he was diagnosed with RMSF! He was put on doxycycline and ceftriaxone. He also had to get on other meds to treat the blood pressure and heart. The disease threw his heart into Afib. Today is June 20 th 2015. He is on the road to recovery, of the worst this illness , but I am concerned about the long term effects he will have because of this. He does seem to get fatigue and has this burning in parts of his body. This is the reason I am here searching for reasons of why he has this burning, and find some answers. I found this website and decided to share our story. I m hopeful that he will healthy again and all this will go away. This site is enlightening and I am grateful to have read all of the comments made by you that have been diagnosed with RMSF
Living here in Central Montana I’ve found that folks are a little relaxed when it comes to confining their dogs on their own property. I’m going to make an effort to inform people of the ways stated in this very good article that they can reduce the risk of RMSF. I really wonder if deer and elk also carry the species of ticks that are carry RMSF. Can other animals be infested with that species of Ticks?
I was diagnosed with RMSF in 2010 (in SW Mo) after six months of severe illness and many ER visits and endless delays by Drs. I was finally hospitalized and tested for tick illnesses but sent home a week later with no treatment awaiting test results. I couldn’t even hold my head up when being wheeled out on discharge. One day later I collapsed and was rushed to a larger hospital via ambulance with face palsy, fluid in lungs, tremors, rash, an exhaustion so severe I cannot begin to explain it, and blinding headaches. It effected my brain and my my thinking. After treatment (doxy through iv) and more doxy at home…I have been on a five year journey of fighting symptoms and trying to regain my life. I’m an elementary school teacher but do not have even half of my energy or stamina back. I’ve tried every supplement (some have helped), totally changed my diet, and have been on several more rounds of antibiotics. I have had Drs tell me the lasting effects are all in my head and used to take it personally until I found a Dr in Lubbock Tx who took me on as a patient (Infectious Disease Dr). He was very up on his research and helped me get through the worst of the disease. My titers actually were higher a year after being diagnosed. I am past the worst but still grieve the fact that I am no longer the same. My sharp mind is often foggy and my former boundless energy is lacking. It takes caffeine and so much more sleep at night. Each day seems like a fight…the demands of the day versus the ability of my body to keep up. But I’m thankful I’m alive and hopeful it will continue to get better over time. We all need a Facebook page or website for victims of this disease so that we can find the best healthcare for RMSF suffers.
I am a 52 year old red head from the mountains of NC. I am very freckledy . So when a tick latched on to me it blended right in!
I contracted RMSF this Summer, in July to be exact. I feel certain that if I hadn’t been given right antibiotic quickly that I wouldn’t be here today.
I lost a week this Summer. My fever of over 105 would not go down. I remember seeing my Papaw (grandfather, for those not accustomed to the Appalachian dialect). He told me I could ride my favorite horse into heaven. He has been dead for almost 30 years!
I find that nowadays if I push myself too hard one day, I am useless the next day. Headaches reek havoc in my life now. I am still achy and even still run a low grade fever at times.
I agree with so many others on here…we need more information on the lingering effects of this illnes. Doctor’s knowledge seem limited.
I was just diagnosed with RMSF. I’ve apparently had it since 2013. That’s when my PCP and I began to notice symptoms. Have been dx’d with Gastroparesis since 2013. I’m nondiabetic.
Why aren’t I sicker or deader? I have just started doxy in the past month. My symptoms not on antibiotic are high WBC (18,000), super dizziness, & low grade fever. No hospitalization. No serious organ failure.
Now on the doxy, my bones ache, including spine & cranium. It’s a headache, but more like my skull hurts.
Anyone have any ideas how I dodged this bullet. This is a bad-assed disease. I’m perplexed.
This comment is for the person experiencing hair loss.I have RMSF went through a long treatment with Doxy.
Now my hair is falling out,dry ,brittle and dull.I also have ulcers on my gums that started along with all the other symptoms and last but not least my feet and knees turn bright red when exposed to temperature changes when they did not before I became ill.
The other nightmare is trying find a health care professional that is in the office regularly and will do lab etc instead of sending me on to the next specialist/ER.No one seems to understand this illness .I have heard many times you were treated with Doxy ! Well yes I am well aware but certainly that does not mean this must be my lot forever more.Like the folks posting we are not crazy/neurotic we are very ill.
My daughter has just been diagnosed this morning with RMSF. She starts Doxy tonight. She has been telling me of symptoms for about 2 weeks now. She does not have a fever, but has severe pain and cannot think straight. My heart goes out to all of you who have posted about this debilitating disease. I had Lyme in 1988. Not much was known about it at that time, but I was really sick. Lost a whole summer and was on intravenous antibiotic. Someone posted about a “skull ache”. I know exactly what you mean-I had them, too. I am concerned for my daughter, she just got married and would like to start a family. I’m curious if anyone has tried Essential Oils? They have been proven to kill cancer cells (apoptosis).
Betty Dotson, I am recovering from RMSF I contracted in late August. I have recently noticed that I am losing more hair to my comb which led me to this site. I have not found much except RMSF is related to typhus and hair loss is a forgotten symptom.
My recovery has been good and I feel 95% myself which is fortunate being as I was diagnosed on the eight day. I ended up one week in the hospital, three in the ICU. I don’t remember half of my stay. Like so many I at first went undiagnoised at an ER, they thought I had a stroke.
I am mostly past the fatigue and clouded mind, but I now get headaches, which I seldom had before, and mental task are more difficult. I lost skin off my hands and feet and have some neropathy/numbness in my legs, feet, and toes which might be how life is after RSMF.
All things considered, I am fortunate it was caught before serious complications arose. It grieves me to know that some have died because they were not dignoised or properly treated in time, so like this site, I am working to raise awareness.
I was diagnosed with RMSF in April, probably had it for 2-14 months before I was diagnosed. Had bronchitis and bc of the steroids I was put on further weakening my immune system, the mono virus reactivated in me at the same time. Was initially diagnosed with Lyme too but all data shows that was probably incorrect. And Lyme is not carried by the same species of tick as RMSF where I live. I was diagnosed with bronchitis in early Nov ’14, and worked until March 30th wondering why I was 27 but felt 77 and like every system in my body was starting to shut down on me. I had been at that job for over 3 years and had never even used 3 days of sick time in a year before this. I figured like most things in life, a positive attitude and mind over matter would be more than enough to put this behind me, but many symptoms are outside of my control, which can be demoralizing when you feel you’re doing everything right and not getting the expected results. If you give things enough time you’ll see they get consistently better, just much more slowly overall. Too many times one or two symptoms would get really bad and I would think I was getting worse even though overall I was still improving. That positive attitude is the most important thing to have.
I am still not back to normal but at least I am no longer forgetting things like my name. I went back to work in mid-August and the past 4 months have been miserable and I’m having to accept I just can’t do the things I used to do at the pace and the way I’m used to doing them yet. I had a lot of concussions growing up and 2 back-to-back 5 years ago that took me 18 months to get back to normal even though I was already back to 80-85% after 9-12 months. I feel like that experience and thinking then that I would never be normal again was why I have been able to stay positive, etc despite everything. Initially I thought RMSF couldn’t be worse than that was, but I couldn’t have been more wrong.
Other than the initial diagnosis and treating me with Doxycycline, doctors and specialists have been less than worthless at treating or explaining any of my symptoms. They claim it is all in my head and either stress or anxiety. I knew it wasn’t just anxiety and stress but eventually I started believing the doctors because I was so desperate for an answer.
I have seen all sorts of therapists and mental health experts, and when I tried telling them what the doctors had told me was going on, EVERY single one of them was adamant that the doctors are idiots because I don’t even have a problem with stress AND anxiety. So they definitely aren’t causing these symptoms. Two of these therapists knew me for years before I contracted RMSF. They don’t understand why my medical doctors are just completely neglecting all of my symptoms and concerns.
I know we feel like we aren’t ourselves but don’t let the doctors convince you that you’re magically cured as soon as antibiotic treatment is finished and everything after is just in your imagination. Choosing Vanderbilt to help me with this was a huge mistake, they did nothing but make me feel worse about myself.
4/19/2016 Huntersville NC possible RMSF (waiting on bloodwork IgG/IgM) 17 year old has a lawncare business, no known tick bite. Symptoms started with low grade temps progressed to chills/night sweats/shaking, loss of appetite, fatigue,severe joint pain in knees, ankles, wrists, light headache, dizziness, slight ear ringing all symptoms progressed over 4 days. Late on day 4, slight rash on lower legs non itchy, flat red spots went to primary care dr ran all tests however was NOT placed on doxy. On day 5, 24 hours after seeing dr , rash on lower legs very increased up to groin and joint pain increased to the point of making climbing stairs impossible. CBC with diff platelets low at 60,000, WBC low at 3.3, BUN 20 this was the labwork completed on day 4 however the dr office sent the bloodwork to an off site lab and was not notified of the critical platelet level. Mother insisted at this point on starting 17 year old on doxy and then went to pediatric ER in Charlotte NC. At ER platelets had increased to 89,000 still low and WBC within normal all other labwork normal. ER dr thought possibly HSP diagnosis however this does not fit my son’s profile and course of illness. He will be on doxy for 10 days. Repeat IgG and IgM for RMSF will be rerun in about 4 weeks. Mother called the CDC in Atlanta and truly got a person reading off the website. The ER in Charlotte did not call the ID doctor. The mother also called public health in Raleigh NC and spoke with an epidemiologist who stated a 5 day course of doxy was fine and “why do you care if you get the IgG and IgM RMSF labwork, your son is being treated” I believe this is a re portable disease to help alert officials to instruct ERs and doctor offices in the area that a positive case has been noted. After 2 full days on doxy the rash is subsiding, fever and chills have stopped, joint pain gone, increase in energy level, some nausea. Would like more information on who is to report this case and to where? Should my son see an ID doctor after 10 day course of doxy? Side note my son wears long pants, high socks, work boots, long sleeve shirts to work in for lawncare but was not spraying with DEET. He definitely will be from here on out.
Southeastern NC. Received my official word yesterday that I am RMSF positive. Fortunately, my doctor put me on Doxy last week after I tested negative for Mono. I did not have a rash or high fever. I tend to run low grade fevers that come and go. Generally I just feel horrible. Swollen glands, tired, foggy brain, and loss of appetite. I had no known tick bit. I do live in the woods and we have plenty of dogs. I have been trying to find out how long the symptoms last. From information I received, treatment will end long before the symptoms do. I feel fortunate that I received treatment and diagnosis quickly. At this point, I just want to know when I will stop wanting to sleep all the time.
Aug 18th 2015 is when my symptoms began. Used to be a bus driver, got dizzy one day with body tremors and different limbs going numb. Plenty of CT scans, MRIs, brain and gastrointestinal testing. Finally another trip to the ER with fluctuating blood pressure provided me with a doctor who suspected something odd and ordered tests for lyme and rmsf. So glad he prescribed the doxy before tests came back.. positive for rmsf. Almost 2 weeks into treatment, blood pressure still spikes and fatigued after doing a tiny bit of work. Reading peoples posts offers little encouragement for getting a normal life and a job back. But I still have hope with a wife and 2 young kids. The docs say Im lucky to be alive at all, so maybe I shouldn’t complain about spending my life on the couch now. Retired Army so we wont starve, just miss doing things with my kids. And Indiana has very little medical expertise on rmsf. If anyone has suggestions on treatment besides doxy please let me know. Good luck and God Bless to all those suffering with this terrible disease.
Two weeks ago I started with facial pain and a droopy eyelid. Also I had a difference in the size of my pupils (one will not dilate). Saw my optometrist, who tried to get me into a neurologist ASAP but couldn’t, so I saw
my PCP. I had a nagging headache at the time but didn’t think much about that. My PCP worked on getting me an appointment with a neurologist and prescribed an antibiotic, thinking I may have a sinus infection. That night I went to the ER with a terrible headache, the worst I had ever had (at that point). Had a head CT which was normal, and a brain MRI the next day, also normal. Three days later I had the absolute worst headache ever. Any movement, especially things causing pressure like bending over and even going to the bathroom, were excruciating. Since scans had been clear I didn’t go back to ER but went to urgent care the next day since it was a Saturday. Saw a doctor who basically blew me off, even though my BP was 200/110! I think he assumed I was a drug seeker. He did give me mild pain meds, but they were basically useless unless I doubled them. Went back to my PCP that Monday. She was completely baffled by all my symptoms, but at least she believed me! I had bloodwork for Lyme and RMSF. She called me back 2 days later to say I was positive for RMSF and I started Doxy immediately (been on it 6 days now). Since then I’ve seen a neurologist and have been referred to Infectious Disease specialist. I feel better but still have headaches, especially at night. I’m only able to sleep 2-3 hours before they wake me up. Also have pretty bad fatigue. I am going back to work tomorrow but I dread trying to make it all day long!
My son has been diagnosed with rmsp after suffering with a stinging burning rash. He has no appetite and has no energy. He has had a lot of the other symptoms mentioned in your blog and other people have mentioned. At first the doctor said it was just a skin rash. This has been going on since February 2018. The doctor treated him with steroids for two months. He has even seen a dermatologist who says he has had it in the past but not now. I am very worried about him especially after reading all the comments already posted. He has taken two rounds of Doxy and still is no better with the rash or lack of energy. Do you have any suggestions about what kind of doctor to see?
I have had RMSF for over 13 months. I have had Absence Seizures…. no one tested me until almost a year into this..
I am concerned that there is very little professional experience here in Tampa Florida with RMSF.
When I go the doctor they tell me they have NEVER had a case. Is there anyone that you know that has had this that I can reach out to…. to gain some understanding.
I have had RMSF for over 9 months. I have had Absence Seizures…. I really would like to talk to someone. I am retired military and I have all the medical help a person could wish …. but they tell me…”we never had a case…lets look it up..” this is so weird. Gordon
I was diagnosed with rmsf in may of this year. I had it for a few months before being diagnosed. I have terrible pain in my back down to my inner thigh. The muscles keep contracting making it impossible to sleep. The pain takes my breath away sometimes and I have a very high tolerance to pain. I have had an emg and it shows abnormal but the neurosurgeon says he can’t figure out why. I know it’s from the rmsf. I am going to a infectious disease dr next week. I have vision problems, extreme pain, and muscle spasticity. Hopefully he can help. I am praying for each and every person who has this. It’s the most terrible thing I have ever been through. Much love…
I went to North Carolina for vacation two weeks ago. While walking barefoot on the beach, I felt a sharp sting on the bottom of my foot and extreme pain. There was nothing visible. About 10 minutes later the pain disappeared. A few days later my cheeks and nose were red, which I attributed to sunburn even though I wore 50 sunblock. All was fine until 1 week later after I returned home. My whole body broke out into a rash. Went to doctor and he said it looks like RMSF from pictures, he had never seen it before. He immediately tested and prescribed doxy. The rash is the only symptom I have had and that is almost gone. Obviously, we will continue to monitor. Hoping this was a mild case and that it won’t develop into anything else. Anyone else experience only a rash? After researching, this disease is quite scary and I am not taking it lightly.
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