My Rocky Mountain Spotted Fever Story: Part 3

I am still struggling with talking about my story with RMSF because I worry that people are thinking I am doing it for “attention” about my illness… and then I get a phone call this morning that brings me to tears and it quickly reminds me I am doing the right thing bringing awareness to tick borne illnesses.

Before I talk about my story I want to tell you a little bit about my phone call this morning.  I have a friend that lives in Norman.  She knew I had RMSF but didn’t exactly know all the symptoms and problems associated with having this illness.  After reading my first blog she recognized many of my symptoms as some of the problems her dad had been dealing with for over a year.  He was being treated for dementia because his memory had gotten so bad he would forget how to drive home, leave burners on after cooking, and all the other things that someone with dementia deals with.  He was also being treated for arthritis, enlarged prostate and quite a few other issues.  She encouraged her mom to get her dad an appointment immediately and have him tested for tick borne illnesses.  He was tested and he asked for doxycycline.  The tick panel came back negative but he could already tell a difference in his thought process after just a few days of doxy.  They had a neurologist appointment yesterday and after doing all the scans the doctor tells her dad he does not have dementia and should be tested for Lymes.  The neurologist was knowledgeable about tick illnesses and asked him if his symptoms came on sudden or if they slowly progressed…. knowing that dementia doesn’t happen quick… it is more of a slow progression.

As her dad left the doctors office he  broke down with tears flowing, knowing he has a chance to get better.  He knows the struggle he has ahead of him with dealing with Lymes and the long term effects, but feels with treatment at least he will have some of his life back.  He will get to see his grandkids grow up, he will get to go to work, he will get to live life.  ( If you haven’t read the Kris Kristofferson story.. google it… read it!… his story is very much like this one.)

I’m telling his story to tell you I’m not going to think any more about writing and telling people about my story.  I want people to understand that these tick illnesses mimic lots of other diseases.  There are lots of stories of people thinking they are having a heart attack, being treated for dementia, fibromyalgia, arthritis, and a whole list of  other problems with in reality they have Lymes or RMSF or another tick illness.  These are treatable but HAVE TO BE DIAGNOSED EARLY.  RMSF and Lymes  are deadly if not treated.  They will finally cause damage every part of your body including your heart, kidneys, lungs, liver, prostate…. you name it… they will damage and destroy it and KILL YOU.

My Story: Part 3

I have to fess up…. When I wrote my last blog on June 5th,  I was talking about how much better I was feeling (and I was)  while sitting in my pajamas.  I had been in my pajamas for over 24 hours.  I did feel so much better but I still wasn’t 100% and I knew it.  Just feeling like getting out of bed felt so good.  The day before we had gone with our kids and helped them find some landscaping rocks at my parents property, gone out to eat, and just enjoyed spending time together.  I knew not to overdo it so I spent the next day just relaxing.  It made me think of something I had read:  “Some days you think you are doing life when in all reality you just got out of bed.”  I spent several days thinking I was really “doing life” when in reality I just was out of bed.

I returned to the doctor on Friday, June 10th.  This was 1 week after finishing my month long cycle of doxycycline.  I did well on the antibiotic and didn’t have the issues others have.  My doctor made sure I understood the importance of beginning a good probiotic immediately.  The joint and muscle pain I was having is about 90% gone, I do have some joint issues still but nothing like I was having.  I am still dealing with memory problems, insomnia, hot flashes, and some eyesight issues.   I thank God daily for my doctor, not only did she recognize my symptoms and get me tested immediately but she is also willing to research and work with me and continue to help me recover.  I was tested again and will get my results next week.

I told her about some of the natural and herbal remedies I have been researching and talking about with others with tick borne illnesses.  (I’m not sure what to call “us”… we need a nickname)  She also wants to do some more research herself and she also wants to call me after a week or so and see how I think I am doing with these natural remedies.  She did give me something that should help with the hot flashes and insomnia that I can take.

The thing that is bothering me the most now seems to be my memory.  I completely understand why my friends dad was diagnosed with dementia… I believe if I had not been diagnosed with RMSF it would not have been long till dementia would have something they would have been using to describe what was happening to me.  A few of my brain issues are:

• I am saying wrong words in sentences and not realizing I am saying them wrong
• I am very forgetful…. very
• Telling same things/stories to people many times
• I think I make stupid mistakes/decisions

I know you think you deal with some of these yourself… and you probably do… and I did also even before RMSF but it is more pronounced and more often.  I could tell you 1000 stories of my “brain farts” I’ve had lately but I don’t have that much time.  ( But…I’m sure if you asked some of my family and friends they will tell you some of the stories. haha)  Most of the time we are able to make light of it and continue on but I don’t want to live like this for the rest of my life so I will continue to try natural remedies for memory.  I, along with my doctor, am trying some things and I will let you know in a few weeks to a month how I am doing with these treatments.

AWARENESS!  We have got to become aware of the symptoms of these diseases and request/demand to be tested.  My hope is that doctors start realizing the large number of people with these diseases and become educated. There are many doctors that do… we want ALL doctors to understand.  Until then we have to really pay attention and educate ourselves.  Don’t just think you have the flu, arthritis, dementia,  fatigue, joint pain, heart issues…. the list can and does go on and on.  Getting an early diagnosis can make the difference in your recovery!  It can be the determining factor in whether you deal with this for the rest of your life or if you make a complete recovery, it can also be a difference in life or death.  In one of the Facebook groups I belong to it was asked, “What are the 3 things that most improved your health?”  We could only list 3 and that was very hard for me.   There were lots of really good answers and “ideas” of things I plan to start researching to try.  My answers were:

1. A knowledgeable doctor
2. Personal education of the disease
3. Family and friend support/knowledge

I think having a knowledgeable doctor is key and can make a huge difference in your journey of getting well.  If you don’t have a knowledgeable doctor… GET ONE!    Of course, personal education is what we should all do when we have something affect us like these diseases do.  Family and friend support is a lifesaver.  My husband has been a huge factor in my recovery.  He understood.  He educated himself.  He did everything that needed to be done that I couldn’t do.  He just understood and because of that I felt like I could just concentrate on getting well without having to try to “do something” that I wasn’t able to do.  I love him more every day because of his love and understanding!!!  Family members that would call and check on me or come help me when I didn’t feel like helping myself was also key in my recovery.  The support of your extended family … your friends… is vital also.  To know you have friends that would call you daily and check on you, to send you a messages, send you get well cards, and to come by and check on you helps you keep a positive outlook which is very important.  Your mind starts playing games with you when you feel so bad and to have family and friends that will help you, do anything for you is more helpful in your recovery than you will realize.  For them to just understand what you are going through is so very important.   It helps you not feel so much like you are crazy and that what is happening to you is normal (even though this normal isn’t really normal).

This is my journey almost 6 weeks into my “diagnosis”.  I’m not really sure how long I have had RMSF because I don’t recall a tick bite, a rash or a fever.  I never follow the rules.  🙂

If you want to refresh your memory on the symptoms go back to my blog:  TICKED OFF.   And remember… this is my story.  There are 100’s of 1000’s of stories and they are all different.  Everyone’s symptoms vary as does their story.

Rocky Mountain Spotted Fever Part 2

I live in Antlers, Oklahoma.  Our claim to fame is we are The Deer Capital of The World which should be a clue to most that we also have an abundance of TICKS.  As a kid growing up, ticks were just a part of being outside in the summertime.  It was just a given that you would get a tick, or two, or…. well you get the picture, ticks weren’t something we worried about.  There was always a nightly ritual of making sure you checked yourself for the little critters while you were bathing.

I guess when you grow up with this mentality it also carries over into adulthood.  I had heard of different “tick fevers” but didn’t really understand the affect they could have on someone’s life  It can actually change the life of entire families because of one person’s diagnosis.  I actually thought it was kinda like the flu or a virus… it was something you could have a week or so and then you got well.  BOY WAS I WRONG !!!  While my story is shorter and easier than most stories…. it hasn’t been an easy recovery.

I started having body aches sometime around the end of January or the first of February.  It seemed to be mainly my larger joints that hurt the most.  I had gone back to work in October 2015 and just chalked it up to not going to the gym anymore.  I had been going to the gym at least 3 days a week and quit when I started back to work for a local school district.  The aches continued to get worse. I was still able to “do life” but just hurt while doing it.   I remember painting one of our bathrooms one weekend in March and then having problems with severe pain for about 4 days.  I couldn’t sleep because my entire body hurt, the pain seemed worse in my hips and legs.  When I would stand up I would have to walk hunkered over for about 10-20 seconds.  I was still thinking it was arthritis, getting older and not exercising.

My legs were crushed from my knees up by a truck in 2002 and I have lasting damage from that accident.  I had decided some of my pain was due to the damage from that accident and convinced myself it was something I was just going to have to live with… and  it was going to continue to get worse as I got older.

I was also having trouble sleeping.  Normally I could fall asleep the minute my head hit the pillow… not anymore!  I started noticing it would be 1-2 a.m. before I would finally go to sleep.  Once I went to sleep I would find myself waking up about every hour either in pain or hot flashes.  It had gotten to the point that I never had a full nights rest.

We went on a vacation to Mexico with a group of our AFLAC friends and I was going to the room about noon and sleep for 3-4 hours each day.  This should have been a clue that something was wrong… no one goes to a beach with friends and wants to spend all day sleeping!!!

As the pain continued and I was becoming worn down from lack of sleep, I finally went to the Choctaw Clinic in Atoka, Oklahoma at the end of April 2016.  I was tested and officially diagnosed with Rocky Mountain Spotted Fever the first week of May 2016.  I do not remember a tick bite, a fever or a rash. In fact when she said she was testing me I almost chuckled because I didn’t remember having a tick bite and had only “heard” of a few people that had Lyme Disease. I’m not sure I had heard of anyone with RMSF.

My symptoms were mainly fatigue, muscle and joint ache/pain, insomnia, hot flashes and a few minor headaches.  My white blood count was also low.  I started treatment for RMSF on May 2, 2016. Before starting the antibiotics I felt pretty bad but it wasn’t something I couldn’t deal with each day.  I was very sore, tired, not sleeping and looking back just all around irritable.   I am thankful I have a doctor that is knowledgeable about Tick Borne Illnesses and will run the necessary tests to find the correct diagnosis and treatment.

I had been taking the antibiotics and a probiotic for about 3 weeks when on May 22, 2016 it was like I hit a brick wall.  I was wiped out.  I didn’t want to get out of bed and didn’t for 6 days.  I had no idea what was happening or why I was feeling so very bad.  My heart rate is usually in the 60’s  but was now in the 90’s and I never had problems with my blood pressure but it was elevated. I finally got online and did what any person does anymore… I GOOGLED but didn’t find much about what was wrong because I really didn’t have a clue what to research.  Then I found a “support group” on Facebook for those with RMSF and Lyme Disease and started asking questions.  Immediately, they started telling me I was going through what was called the “Herxing Effect” or sometimes called “Die-Off Effect”.  It’s one of those good and bad things.  Herxing occurs when dead or dying bacteria release large amounts of toxins into the blood and tissues faster than what the body can eliminate them.  This basically means you feel 100% worse than you did before you started your antibiotics.  You start thinking you are going crazy.  You don’t want to lift your head, you don’t want to eat, you don’t want to do anything.  Until I was able to talk with others that had gone through this I had no idea what was happening and was worried that I was getting worse instead of better.  I learned from the Facebook group I needed to start detoxing.  I immediately started drinking lots of water with lemon, taking Epsom Salt baths, and eating clean.  Now….. I said I wasn’t hungry during this time…. But, I was actually craving sweets.  All I was eating were cookies.  I really didn’t want anything else.  The sugar I was consuming was not helping but hurting and actually making me feel even worse.  I haven’t done much research on this but was told by someone in “our group” that the toxins love, love the sugar.  Within two days of detoxing I started feeling “some”  better.

I finished my antibiotics on Friday, June 4, 2016 and will return to the doctor on June 10^th.  I have felt pretty good most of this week but am continuing to take it easy.  This weekend was a good weekend and I actually am starting to feel “normal” again.  I am hoping that I have turned to corner and will continue to do well. I realize there are many with RMSF that don’t for various reasons.  One of the biggest reasons for complications and a more difficult recovery from RMSF is a delayed diagnosis.

Pay attention to your symptoms.  Demand to be tested.  Awareness is key!!!!!!  I was not aware… in fact I had no idea. I grew up with ticks but didn’t have a clue what they could do to our body other than a small bite.

If I had not gone to a doctor that recognized some of my symptoms I would probably be taking medication for arthritis and getting worse instead of better.

** If you want information about the FB group let me know.   They are a great support system.   I can also hook you up with a good AFLAC agent if you need supplemental insurance.  🙂 haha

These pictures were taken just this week from our front porch.  (Our house is inside the city limits btw.)  ANTLERS really is THE DEER CAPITAL OF THE WORLD !

Taken from our front porch.

Taken from front porch just this week.

MY ROCKY MOUNTAIN SPOTTED FEVER STORY:  Part 1

This blog will be longer than normal but I want to talk about something I have been dealing with for the past several months.  I have wanted to write about this earlier but am just now feeling well enough to write.  If there are mistakes just chalk it up to “brain fog”.  🙂  

I will try to cover what I consider to be the most important things FIRST…. THEN I’ll tell a little about MY story with Rocky Mountain Spotted Fever (RMSF).  I will probably cover my story in several parts or several different blogs.  This blog will be more about the disease RMSF.  Be watching for blogs to follow that deal more with my personal story.  

The first and most important thing I want people to read is the SYMPTOMS  because the main reason I would even write a blog like this is for awareness.  I sorta feel it is now my “duty” to help spread awareness about tick borne illnesses.  There are many tick borne illnesses and I don’t have the time to cover all the symptoms for each one so I will address RMSF because it is my diagnosis.   Although many of the symptoms seem to be the same for ALL the “tick fevers.”  RMSF is caused by infection with the organism Rickettsia rickettsii and is considered to be one of the deadliest of the tick fevers.  According to the Center for Disease Control and Prevention treatment for this disease is most effective at preventing death or if started in the first five days of symptoms.  

Symptoms of RMSF are:

I compiled this list from a little bit of everywhere.  Not everyone will have all these symptoms, I sure didn’t because as you can see below I only had a few of the symptoms which is why is was so surprised when I tested positive for RMSF.  This is not all the symptoms but a list of the most common ones.  And as with most illnesses everyone’s symptoms vary in degrees.

• Tick bite– (I DO NOT remember having a tick bite… but I must have had one to contract RMSF)
• Fever – (I DO NOT remember having a fever)
• Rash– (I DO NOT remember having a rash. But…many do not report having a rash)
• Muscle &/or joint pain/aches – ( THIS IS my biggest and worst symptom – it is the reason I finally went to the doctor )
• Fatigue – (yes I do have, some days much more than others)
• Headache – (I had a headache for a few days after starting antibiotics)
• Nausea/ Vomiting– (I did not have)
• Abdominal Pain – (I did/do have mild pain periodically, but nothing I consider enough to even discuss)
• Conjunctival injection/red eyes– (I do remember thinking my eyes were bloodshot one day and asking others if they thought they were red.  I do think my vision has changed for the worse in the last few months.)  Looking back I remember wearing sunglasses one day when it was very cloudy and Sonny asking why I had glasses on.  I replied “because the light is hurting my eyes.”
• Brain Fog -(I do have serious bouts with this!)
• Restlessness and insomnia – (I definitely have this!!!!)

It is very important to go to doctor and be tested as soon as you believe you may have tick fever because the disease can progress quickly and can be deadly within a short period of time (days).  I’m not sure why some become seriously ill within a few days and some don’t.  Thankful I didn’t!!!  An early diagnosis will determine your recovery time and prognosis.  

I had only a few classic symptoms and really thought I was developing arthritis.  When I decided I had suffered with the joint pain long enough I called and made an appointment with my doctor.  I am just thankful I had a doctor that recognized my symptoms and tested me for tick fever(s) instead of just giving me something for arthritis.  I will write more about my ongoing RMSF story in future blogs.

This disease and the recovery is difficult even with an early diagnosis and a good prognosis, but if you wait around there could be some serious complications that could possibly cause death.  

COMPLICATIONS:  The Reason for diagnosis and treatment ASAP:

• It damages small blood vessels causing gangrene and death of extremities requiring amputation.
• Inflammation of heart/lungs and other organs causing organ failure.
• Inflammation of brain: (encephalitis) causing seizures, confusion and delirium along with other problems that go with encephalitis.
• Death: If not treated there is a 75% rate of death.

Please protect yourself from ticks.  I had first put: Please protect yourself this summer from ticks but I removed the words “this summer.”  It was not summer when I contracted RMSF.  Ticks are around most of the time in our area.  They will be worse in summer months of course, but you can get tick bites 12 months out of the year in our area.  If you have a tick bite be aware and if you develop symptoms of RMSF….go to the doctor ASAP!!!  If the doctor doesn’t say anything about testing you for tick borne diseases… DEMAND IT!!!!  If you don’t remember a tick bite but have some of these symptoms…. get tested… and DEMAND IT!!!   If you want to talk or ask questions let me know and I will help you.  I’m not an authority on this subject but I sure know more about it than I did 4-5 weeks ago.  I will discuss in later blogs my story, treatment, recovery, the prevalence of tick fever(s) in our community and stories of others I have talked with in last 4-5 weeks that have a tick fever diagnosis.