Rocky Mountain Spotted Fever : My Journey

Discussion in 'Bush Medicine' started by Wasp, Jul 4, 2018.

  1. Wasp

    Wasp We are GO for Sting! Supporter

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    I had a rare condition called primary hyperparathyroidism and in May 2016 I had a parathyroidectomy, in August I found out I had another rare condition called B12 defficiency probably related to the afrementioned issue. Both of them left me weak and my body took to years to get back to some sort of normalcy. Despite some lingering effects I was able to start working with some determination in February 2018 but still had fatigue. I was so thrilled to be out of the house and doing something again.
    ___________________________________

    Rocky Mountain Spotted Fever

    I dont know how else to tell you about it so far except to tell you I was miserable and scared, and after my parathyroid issue which had me literally dying in the bed I feel like I can take a lot. Even though its only been a month its been as hard on my mind as my body, especially not knowing for over a month and multiple Doctors telling me (once again) that "nothing is wrong everything looks good".

    I have Logged/journaled my experience by looking back at texts to family and discharge papers from hospitals and Dr appointments. Some I felt so bad I had to write it days later. I thought I'd share. My journal as well as my symptoms. Maybe nobody cares but maybe it will give precaution and maybe it will help someone else self diagnose or help a family member.
    ___________________>

    I spend a lot of time outside, my work is outside, and of course yardwork is outside. Just before I started feeling bad I was mowing and trimming hedges in the yard. I dont know the exat time I got it but after work one day I forced myself to mow the lawn, literally the next day I was having issues.
    It is rare to have issues so soon, it is also rare to not have a full rash or much fever but I seem to be good at rare apparently.

    The very next day (Saturday) I didn't feel well, I dont know how to describe it except I am pretty good at reading my body. I text my mom and told her I wasn't feeling well and she suggested dehydration and then hyperventilating since I was having breathing trouble. I text her back, "SOMETHING IS WRONG WITH ME!" On Tuesday I was riding in an ambulance to the hospital after blacking out and coming too with serious breathing issues. Yep it was that fast.

    [Im no expert but you can have far less signs and still have RMSF (or other tick diseases), you can also be dead or paralyzed within about eight days.]

    I was quickly discharged after negative bloodwork.

    As I live alone I didn't find the tick in the middle of my back until Thursday. After pulling it off I marked it with a blue sharpie. You can see the three large lumps on my back to the right of the mark and if you look closely at the picture you can see small white rashy bumps all over my back. I had been itching for days and having significant breathing issues (like suffocating) as well as other problems.

    Blue dot is tick bite, 3 large lumps and rash (white bumps) are visible.
    20180604_012152.png

    Five ER visits, two of those were ambulance rides, multiple doctor visits and after a month and a half of literally begging and pleading [and showing my tick bite picture] for help from doctors I finally have an answer, but its just started.

    Luckily on my second ER visit in an attempt to console me a doctor gave me IV steroids and 5 days of doxycycline or I might be in worse shape. They still didn't believe me that it could be that bad and they still elected not to do a tick panel bloodwork even under my insisting.

    My family doctor was nearly rolling his eyes and did a basic blood work and a asthema test and after not explaining how to breathe in the machine until the second time after albuterol treatment claimed I had asthema whivmch I didn't and dont, the inhailers do nothing and they should if thats the problem. By the second appointment he pretty much adked what specialist I wanted to go see and literally told me I needed to find another doctor! Yep he sure did! He scheduled me with internal medecine but new doctors take months to get in and my appointment is the 26th of this month, two months after this started.

    My hematology appointment was on the 25th of June and I've known him for a while. I begged him to do something and told him about my five ER visits and my Doc was sorry, showed him the tick picture and he said "I'm running a full tick panel, why didn't anyone else do that yet its so simple". I shrugged and thanked him.

    I had to go to my gastrologist because although it often causes diarrhea, I hadn't gone all month and was hurting, they even thought I had a gallbladder attack or something was wrong with my pancreas or stomach, the ER said since it didn't seem immediate I would have to wait. Lol My gastrologist prescribed a bowel prep to try to help, it did some but I had an abdominal xray today and it seems like I may need another one. The antibiotics may continue to cause issues for a month, and after going almost 6 weeks during my hyperparathyroidism I hope to god I can keep this straigh or I will be in serious pain, more than I'm in now which is a lot. Sorry about the gut thing but I'm trying for full disclosure for the sake of anyone else that is having issues.

    Today my Hematologiat called and said "Well I got your results back, you have Rocky Mountain Spotted Fever, 30 days of antibiotics". He prescribed Doxycycline 2x a day for 30 days, its an extended 'therapy' since its so long after my symptoms started. I hope this knocks it out. My breathing is still really bad and the antibiotics make it worse. Im trying to not go to the ER because apparently people are often kept and treated for weeks for this, but I will if I have to.

    I can answer some questions related to my condition so far and as it goes forward, I wont tell you what I dont know without saying so.

    I HIGHLY encourage you to FIGHT when you know something is wrong with your body. I dont care what the doctors or your family says, I don't care if they think youre a hypochondriac or crazy, I dont care if they hate you or your family gets sick of it. YOU KEEP ARGUING AND INSIST (!!!!) AND EVEN ORDER THEM TO RUN TESTS. Doctors dont think you could possibly have a condition if you have more or less symptoms than what someone told them it was supposed to look exactly like in some book they read years ago in school! There are some good doctors but they are few and far between, maybe worse than mechanics and lawyers. If your doctor sucks now while you feel okay, go find another one NOW and keep looking until you find one for every doctor you see. ERs dont care if you arent bleeding out on a table so theres that. Please head this warning because without me and my family I would have been dead in 2016, and what happens now as far as recovery or possible irreversible damage is yet to be seen. I only want you get better.

    Now I'll post pictures of my medical journal which is dated. Kinda scribbled but you can make it out. Then I'll list my symptoms.

    RMSF Journal:
    20180703_225130.jpg
    20180703_225152.jpg
    20180703_225444.jpg
    20180703_225614.jpg
    20180703_225623.jpg
     
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  2. Wasp

    Wasp We are GO for Sting! Supporter

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    Symptoms I'll list are in varying degrees of serious and bother.

    Symptoms:
    -Serious breathing feeling like I'm suffocating. Cant get enough breath, cant yawn.
    -Abdominal pain under ribcage about 6" each side of center. Feels like a foot in your gut.
    -Inflamed intestines- everywhere.
    -Serious constipation requiring Dr intervention. OTC meds do nothing.
    -Muscle aches all over body, mostly specific and narrow pains even on both sides of body, go away and return. Muscles sore from short term pressure like bed or sitting a certain way. Muscle fatigue.
    -Blurry vision comes and goes. Hard to read, sometimes unable to drive. Had one episode of vision fading to black but may have been passing out.
    -Ears ringing very loud.
    -Pale skin
    -Lumps and rash discovered when tick was found. Rash was white not really as red but it may have been days earlier.
    -Itching everywhere almost like when poison ivy is just starting except it isn't specific and moves around.
    -Fuzzy head and thoughts. Its hard to explain but its like when you get a buzz from drinking one beer and it first starts to hit you if you arent a drinker. This doesn't go all the way away. I notice sometimes I'm looking at the tv for extended periods but not really watching or listening to it.
    -Fatigue! Major fatigue. My days are less that 10-12 hours long. I try to stay up at least 12 hours.
    -Chills and night sweats. I took my temperature and it was never up but it was one degree low one night. Cold intolerence with covers on and off because hot and cold (sweat and freezing) sometimes minutes apart.
    -heat intolerence including high humidity. This just makes my fatigue worse and extremly hard to breathe. It only takes a few minutes and I'm gasping and thats around 90° out.
    -Heavy legs and arms like they are weighted down. Hard to explain but they are hard to lift and move and feel painful. This is from knee and elbows down and all four limbs.
    -tingling when I wake up in limbs from elbows and knees down. Doesnt last long.
    -mildly burning skin on face in spots. Comes and goes.
    -dry mouth. Also swollen tonsils feeling especially when I swallow. May be due to dry mouth. Mom looked up RMSF and it said it can affect lymph glands including your coratid gland which helps make saliva for back of mouth.

    So.e pf these are worse thsn others and some are only occasional. Many are severe including breathing, abdominal pain, fatigue, fog or cloudiness, dry mouth, muscle pain, etc.

    My BP is elevated even though its normally perfect. My stolic is nearly 20-40 high and my Diastolic is 10-15 high. This comes and goes and is worse when my breathing is bad.
    What is strange is even though my BP is elevated or not my heart rate is 60 bpm resting. It goes down to 52 and up to 70 but sits around 60.

    My 02 (oxygen) is 94-98 which is pretty good.


    Tonight is my first dose of doxycycline as a treatment. So far it seems to be making it harder to breathe but I'll try to bear it because I dont want to go back to the ER.


    I sincerely hope this helps someone.

    If you get a tick put it in a ziplock and date it and stick it in the freezer. If you dont have symptoms then throw it away, if you do then you have something thst can be tested. After a tick bite if you start feeling not yourself start keeping a journal, make a doctors appointment, tell them (dont ask) them to run a FULL tick panel.
     
    Last edited: Jul 4, 2018
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  3. Wasp

    Wasp We are GO for Sting! Supporter

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    Many states have a Lyme Disease Organization thst does testing cheap and are thorough. Some tests fail and there are tens of thousands of stories where people had to be tested two to five times before discovering it.

    Here is a place where they will test your tick for free. There are instructions on their site. I think you put it in alcohol and mail it to them and they contact you with the results.
    http://www.ticktesting.org

    Note: If you think you have a tick disease DONT WAIT GO TO DOCTOR OR HOSPITAL!

    If you have Rocky Mountain Spotted Fever you can be extremly sick and even die or have irreversible damage in a matter of a few days or a week.
     
  4. KFF

    KFF Scout

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    If I may as, how long ago you had the tick?
     
  5. Creaky Bones

    Creaky Bones Supporter Supporter Bushcraft Friend

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    I’ve had Lyme twice and my wife had RMSF. Tick related diseases are serious and potentially life threatening. I’m sorry you’re dealing with this, but I’m really glad to hear you finally have a diagnosis and are being treated. Fingers crossed that the antibiotics work and you can finally start feeling better.
     
  6. IzaWildman

    IzaWildman Grey Dog Supporter

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    @Wasp , thanks for posting this

    ETA: just found second tick/bite on me in two weeks moments ago.
     
    Last edited: Jul 4, 2018
  7. isme

    isme BCUSA Friend Bushcraft Friend

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    I'm so sorry to hear this my friend. I'm glad they finally figured out what's going on.

    Thanks for the write up, I'm going to save this and hope I never need it. I ( like most of us here ) spend a lot of time outside. I frequently come back with ticks. I try to pay attention so that I feel them crawling before they bite. It usually works but not always...

    Prayers for a speedy recovery.
     
  8. central joe

    central joe Supporter Supporter Bushcraft Friend

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    Sorry you had to go through that, but thanks for a very good post. joe
     
  9. Badey

    Badey Supporter Supporter Bushclass I Bushclass II

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    I’m glad you finally got some answers!

    I hope you have a quick recovery!
     
  10. MommaJ

    MommaJ Supporter Supporter Bushclass I

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    Wow. Thank goodness you kept fighting with them.

    Keeping you in our prayers that you get better
     
  11. gdwigg

    gdwigg Scout

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    Prayers, and good thoughts your way.
    Thank you for posting information about this very serious, and very personal struggle. Your information could very well help many other people deal with situations like this in the future.

    Feel Better!
     
  12. Wasp

    Wasp We are GO for Sting! Supporter

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    I was working and doing yard work May 26 on Saturday, Didn't find the tick until Thursday but I know I had it at least that long. I probably would have found it sooner but it was in the middle of my back which is hard to see and an unusual place for a tick. My back had been itching there a few days before but I thought it was just normal itching.
     
  13. Bronco68

    Bronco68 Tracker

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    I'm truly sorry the profession let you down Wasp. The one thing that always comes to mind when I hear stories like this is the first thing I was taught in school, and that was "if you listen carefully, most of the time the patient will tell you what's wrong with them". Keeping in mind that "most of the time" falls in line with another quote which says "the eyes see what the mind knows". In medicine there is a huge push towards evidence based decision making, and in some ways this is good, but in others not so much, as this can sometimes lead to a cookbook approach to diagnosing a problem, and then missing the subtle variations in symptom presentation which can then lead you away from the correct diagnosis. Personally I'd like to thank you for sharing your story, as it not only underscores the need to not only hear what the patient is saying, but to listen, and that running a simple test can go a long way towards preventing a great deal of suffering and anxiety. Much appreciate your teaching moment here, as I'm sure it will help many.
     
  14. Wasp

    Wasp We are GO for Sting! Supporter

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    Thanks. I didn't say everyone in medicine, but its so hard to find someone who will believe you. I think part of the problem today is hypochondriacs now have the internet to teach them exactly how to feel and that doesn't make it clear for doctors. I also believe that despite some test only the patient knows how they feel- which is where the answer is, not someone test result on paper.

    I thought about trying to speak to medical students at my college and just tell my story so they could understand that listening to the patient can give you what you need to treat them.
     
  15. FIELDCRAFTLTC

    FIELDCRAFTLTC Supporter Supporter Bushcraft Friend Bushclass I

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    @Wasp you're a fighter that is for sure. Thanks for sharing your journey with us and providing us with some sound and useful information.

    Prayers for your speedy recovery.
     
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  16. Sandcut

    Sandcut 3% Neanderthal Vendor

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    Dude! I'm glad to hear that you finally landed on a doctor that took the time to listen. I hope you convelesce quickly.

    I was just discussing this scenario yesterday with two other guys on a jobsite. One was my counterpart from the state, the other, a client. All three of us have had issues with tick-borne maladies and incorrect diagnosis from doctors who didn't understand zoonoses. Now, I normally stick up for doctors in most instances. They have a large amount of knowledge that they have to possess in order to do their jobs properly. But havimg said that, the majority of the docs that I have spoke with seem to be reluctant, if not downright hostile, to coming up to speed on tick-borne illnesses.

    One of the guys I was with yesterday has Lyme disease and is on week three of antibiotics. His original doctor refused a blood panel for tick-bore diseases, despite the fact that his job places him in a "high risk" category for zoonoses. Only by insisting to see another doctor and waiting over a month before he was allowed to go outside his healthcare network did he get tested and was found to be positive.

    The other guy had Lyme carditis two years ago. He ended up in heart block. He's the second person that I know that has had this condition in the past two years. His diagnosis was also delayed due to unfamiliarity.

    I will also stress that, if you spend time outside and have the possibility of a tick infection, you are your own best advocate. Don't take no for an answer.
     
  17. Wasp

    Wasp We are GO for Sting! Supporter

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    I showed my doctor the picture and he told me "tick issues are overdiagnosed, Lyme disease is really only found in Connecticut". So yesterday I called and told his nurse thst another one of my doctors diagnosed me with RMSF andI didn't know what else to do next, he said "uh huh" and suggested I go to a pulmonologist for my breathing and didn't want her to schedule me for another appointment. I think hes too proud to admit he was wrong. He better hope I don't have permanent injuries as my pain and suffering is enough already. All he had to do was a tick panel or keep looking, my insurance would pay. Hes gonna get someone killed. Course I'm not thrilled at the ER docs either.
     
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  18. Bronco68

    Bronco68 Tracker

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    I agree, the patients history and experience with their complaint is the the most important piece of the puzzle, and hear ya with the Google driven hypochondriac patients. And I also get that you weren't making a broad implication of medicine in general. No doc will ever get it right 100% of the time, and speaking from the other side I can tell you that I have learned a thing or two from the thankfully short list of the ones I've missed, and am better for it. But all the same I'd rather be guilty of an occasional over utilization of a test than miss something important, as under certain circumstances a negative result is just as valuable as a positive one.
     
  19. Paul Foreman

    Paul Foreman Bushmaster

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    Goodness gracious. Mercy ...
     
  20. Wasp

    Wasp We are GO for Sting! Supporter

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    Google was the only reason I found my parathyroid adenoma. My mom was tired of me being so sick and I mentioned "could it be parathyroid" the literally the fifteenth ER doc and he said...."have you been taking calcium pills?" And in three days I had an answer. My adenoma was one of the largest the specialist had ever removed and thats all he does. My calcium was 11.2 and nobody saw it as 'that far out'. Even after I was posative one doc told me-"its not that high" well people die around 12 so....lol.

    I'm getting off of the RMSF subject though.
     
  21. M.Hatfield

    M.Hatfield Supporter Supporter

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    This exactly. At the same time, I wish you could have been treated in a more direct way. Finding a diagnosis shouldn't have to be so difficult. :(
     
  22. Sandcut

    Sandcut 3% Neanderthal Vendor

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    Well, based on my experience, @Bronco68 , you are the exception to the rule. So, thank you. As I bolded from @Wasp above, the biggest problem that I ran in to many years ago was finding physicians who were even willing to discuss the issues with you. Me doctor, you patient. Lyme disease and other tick-borne diseases really became an issue publicly around the time I was in undergraduate school. Due to my profession as a field biologist, as well as my hobbies outdoors, I've been following advances in our understanding of zoonoses in the US in primary literature all along. What I find discouraging is, having studied epidemiology, biochemistry, microbiology and wildlife diseases, I would expect that when you begin speaking to a physician about a subject they would be able to recognize the difference between someone with Munchausen's Syndrome and someone who actually has a clue. But when you have to correct an infectious disease "specialist" on their interpretation of Western Blot results or when a rheumatologist's recommendation for stage I lymphedema is to "drink a tall glass of water" it gets pretty aggravating.

    Fortunately, Wasp was educated enough and resourceful enough to stick to his guns and forced the issue until it was addressed adequately. I know a lot of folks who would simply accept the first doctor's diagnosis because, well, they're the doctor. They would then continue to suffer because their doctor told them that nothing was wrong.
     
  23. bosque bob

    bosque bob Scout

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    Glad you are doing better and on the road to recovery. I think one lesson from your tale is to keep going until you find a doctor who listens. Sometimes folks in the medical business forget it is the person being treated not just the symptom alleviated.
     
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  24. NevadaBlue

    NevadaBlue Graybeard Supporter Bushcraft Friend Bushclass I

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    I am glad you finally got a diagnosis. I hope the treatment works for you. Prayer continues.

    It sounds like you have at least reason to complain to the medical boards for some of the docs, and maybe even legal rights. After being told about the bite and told that lyme exists only... That IS incompetence. Period. I am not a doctor and I know lyme exists in lots of places. The lack of proper treatment, even with solid evidence of the possibility of tick disease sure seems like something a good shyster lawyer would like to hear about.
     
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  25. blind & lost

    blind & lost Supporter Supporter Bushcraft Friend

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    Continued prayers for full recovery, thanks for educating us as well.
     
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  26. Scotchmon

    Scotchmon Supporter Supporter

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    @Wasp, Man you have sure been through some tough times . I sure hope your health continues to improve. Thanks for sharing all you have. You may really help someone looking for answers. Continue to be strong, my friend ....
     
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  27. Hillbilly stalker

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    Man thanks a lot for the post. A lot of people don't take tick bites seriously. They can really hurt our hunting dogs too. I'm glad your on the mend and thanks for sharing. Finding the right Doctor is EVERYTHING. We found my wife a new Doc and he immediately took my wife off of 7 of her 9 medications. Get well brother....it ain't your time to go. Drive on !
     
    Last edited: Jul 6, 2018
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  28. Beach Hiker

    Beach Hiker Traveller Supporter Bushcraft Friend

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    We've all been worrying about you.... hopefully in a few months you'll forget you were ever sick. Keep us posted.
     
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  29. Wasp

    Wasp We are GO for Sting! Supporter

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    Ive heard a few people say they were treated pretty quickly and didn't have much issue.

    Right now I feel terrible. I continue to have serious muscle cramps and non visible spasms. I still cant breathe normally and it gets worse at times. My mind is so cloudy I cant even remember when to take my seven meds at particular intervals in the day or if I've even taken it when I am ready to. I ate half a bowl of cereal and felt like I ate thanksgiving, my whole gut is inflamed. I have no energy and taking a shower takes all of my energy.
    I had to go back to the dentist and this time, never before, I had a reaction to the local anesthetic which caused agonizing pain. The dentist said my immune system is compromised and its causing delayed anti-inflammatory response.

    This stuff is so scary and I hurt everywhere. Docs dont seem to have a clue what to do or who I need to see and since most of my bloodwork still shows okay they think I couldn't possibly be as bad as I'm saying but I just want to get well. So exhausted!
     

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