Hello. Remember me? Since around mid-July, I’ve been fairly “scarce” here on gfe and social media. I’ve been off dealing with an illness called Ehrlichiosis that hit me in mid-July and took me down soon thereafter. Almost fully down.
It turns out that I was very ill, what I now think of as “tick sick.” I know that sounds kind of disgusting if you don’t like ticks—and really who does?
My actual tickborne illness was a bacterial illness known as Ehrlichiosis. Ehrlichiosis is primarily carried by the Lone Star Tick. (Note that this particular type of tick can also carry other tickborne illnesses as well.)
After 2 weeks of being very ill and having no clue what was happening to me, I spent 5 days in the hospital in early August. With insurance companies often requiring very short hospital stays, 5 days in the hospital these days is a long stay. It definitely seemed like a very long stay.
I was so very fortunate that I was assigned an outstanding Infectious Disease Specialist as soon as I was admitted to the hospital. I pretty much feel that this doctor, Dr. Ali, walks on water, because I know he saved my life.
He told me almost immediately after assessing me that I was “very, very ill.” Hearing those words from a very serious-faced specialist is sobering to say the least. This continued to be true when he repeated this assessment numerous times in the hospital and even repeated it when I had my follow-up appointment with him last week.
The really good news is that my follow-up appointment and accompanying lab work last week showed that I’m fully healed from Ehrlichiosis now. I was so thankful to get that news from Dr. Ali!
“Fully healed” does not mean fully recovered though. I’m still working to regain my strength and stamina. Plus, I still have some momentary brain fog and a seemingly shorter attention span at times than I did previously.
Sleeping is also still a challenge. I still need a nap during the day to be able to function, but sleeping restfully at night can be difficult. Forcing myself to stay awake during the day does not result in sleeping well at night. It means that I get no sleep during the day and I still toss and turn after a few hours in bed at night, which just makes for a more tired me overall.
But, overall, every few days I can visibly see that I’m making progress and getting closer to being back to “normal.”
Here’s my Ehrlichiosis story (with way too many words, per my usual style!). I’ll cut to the chase a bit though and urge you to seek immediate medical help if you ever suspect you have Ehrlichiosis. My illness could have been far, far worse. Before I get to the nitty gritty details on all, here’s some simple advice from Dr. Ali:
Shower after any outdoor activities during tick season to help prevent tickborne illnesses.
Showering is an easy thing to do, of course, and you’re far more likely to discover a tick immediately—which is key—if you follow this advice.
How I Went Down and the “Complications” That Kept Me from Seeking Proper Help
Shortly after my birthday in mid-July, I started a downward health trend. It started while we were on a quick road trip. At first, I thought I’d been glutened because I did start feeling somewhat better after resorting to my usual remedies.
However, that week after we returned home from our trip, I continued to feel up and down. Some days I felt like I couldn’t function at all and other days, I felt well enough to leave the house with Mr. GFE for short periods of time and felt fairly normal. On those days, I was really hoping that whatever I was dealing with, would soon be behind me.
I suspected that my ongoing symptoms were because my doctors were adjusting my medications and I was adjusting my diet as well. It seemed like my additional food sensitivities to corn and soy were flaring. At one point, I also thought that I was reacting to nightshades.
Two of my medications actually contained corn. I made an ill-advised decision to start weaning myself from one of those medications, my hormone replacement therapy (HRT). In hindsight, a better option would have been to have immediately sought a compounded version of that medication (with no problematic fillers).
Eventually, I was spending whole days in bed or on the sofa, but I naively thought that the HRT factor was the cause. I even read online about how others had reacted just as severely to weaning themselves from HRT. I called my gynecologist and a compounded version of my HRT was prescribed. I figured that once I started taking the corn-free meds, I would return to my usual self pretty quickly. That did not happen.
With each day, I was feeling worse and worse. I had no appetite and I literally felt like I’d been beaten up.
One particular weekend I stayed in bed the entire weekend. It was a hot summer weekend, but I alternated from being completely under the covers and then on top of the covers, going from hot to cold over and over and suffering the worst muscle and joint pain that I could ever remember.
I checked my temperature several times at home during my illness but it always registered well below 98.6, which is pretty common for me as someone who is hypothyroid. With a normal temperature, but still feeling “waves” of heat, that also made me think that it was simply hormone issues at play.
A constant headache also plagued me. It seemed like a sinus headache, but the usual over-the-counter meds didn’t get rid of it for long.
I thought of all the medical events that I’d experienced in my lifetime and felt certain that even considering childbirth, a tonsillectomy as an adult, gall bladder removal because of gall bladder attacks, and a hysterectomy, this was truly the worst I’d ever felt in my life. (By the way, all those surgeries—and the illnesses that preceded them—were before I went gluten free and, in fact, were early signs of my gluten issues.)
I was eating less and less. Mostly I was taking in water and tea. I would occasionally take a few sips from a mug of broth or a simple soup, but that was all I could manage to eat. Even though I was constantly drinking, I never felt like I got enough liquids. I felt dehydrated. My throat was so dry and sore, that it felt like it would crack.
Despite my time in the prone position, I was not really sleeping much either. I did think about going to a doctor, but I could barely move, so I couldn’t imagine making it to a doctor’s office. Plus, I didn’t really know which kind of doctor to see. I had talked to two of my regular doctors on the phone, but those conversations were all focused on something being amiss with my meds.
Finally, on Friday evening after the second week of me not functioning, Mr. GFE told me that he was taking me to the hospital the next morning. I protested because I thought what I was going through was nothing that the hospital would be helpful with, but at that point, I was protesting very weakly. First, because I had no energy to protest and, second, because I knew that I really did need medical help.
I spent another very miserable night trying to get some rest. By the next morning, I could not tell Mr. GFE my social security number when he asked in preparation for going to the hospital. I tried, but I simply couldn’t summon it from memory.
The truth was I could barely talk—and when I spoke I was not speaking coherently. I also could not walk on my own at that point. Mr. GFE had to even help me get dressed.
Once admitted to the ER, the hospital staff kept saying that I had aphasia and they always said it with what appeared to be alarm. Later I learned that aphasia is a “loss of ability to understand or express speech, caused by brain damage.” Yikes. Thankfully, I only had a vague idea of what aphasia meant when they used the term.
All these scary symptoms did help me get immediate attention in the emergency room and, ultimately, the right diagnosis.
Symptoms of Ehrlichiosis
The following information is compiled from several medical sites, such as the Mayo Clinic and the Center for Disease Control (CDC).
In some ways, this list of Ehrlichiosis’ basic symptoms does not really sound that bad. The symptoms sound like ones might experience with the flu or a virus and while usually unpleasant—sometimes very unpleasant—one usually lives through them fairly well. But I’ll repeat that for me, the symptoms I experienced when I had Ehrlichiosis were far worse than anything else I’ve ever experienced with my health.
Basic Symptoms of Ehrlichiosis
One does not have to have all of these to have Ehrlichiosis. You can see which ones I had from my notes.
~ Fever
(Upon admission to the ER, my temperature was 101, which is very high for someone whose temperature is typically under the norm.)
~Headache
(Check.)
~ Chills
(Check.)
~ Malaise (Weakness/fatigue)
(Malaise was actually listed on my doctor’s report as one of my symptoms. Basically, you don’t feel well at all, you feel weak, tired, and uninterested in life, and you don’t have any idea why. That definitely described what I was experiencing.)
~ Nausea/Vomiting/Diarrhea/Pain in abdominal area
(Surprisingly, after the travel episode where I thought I’d been glutened, I only had some mild nausea and no other typical GI symptoms. I did have pain in my abdominal area on the left side and in my lower back, which made me think I had a UTI. I did not.)
~ Loss of appetite / Weight loss
(I had zero appetite. I forced myself to eat chicken broth and simple soup, but not much sustenance was getting through. I lost at least 15 pounds during the time I was ill. I don’t weigh myself on a regular basis, but over a week after being home from the hospital I weighed myself and that’s how much I was down. I was really surprised and as I’d been eating normally again for a good while, I wondered how much weight I had actually lost during my illness. When one is living in pajamas, weight loss can be more difficult to recognize.)
~ Confusion
(My confusion and “aphasia” was what initially alarmed the ER and hospital staff the most. Not only could I not remember my social security number, but I couldn’t figure out other simple things. For example, I was focusing very, very hard on finding my sister’s phone number in my phone’s “Contacts” after being admitted to the hospital, but just couldn’t figure it out. So I ultimately called my niece, her daughter, instead. In my confused mind, I couldn’t get beyond seeing my niece’s name as my sister’s. On some level, I knew that I was confused, but I couldn’t get it past my confusion to find my sister’s name in my Contacts list.)
~ Muscle aches
(Check.)
~ Joint pain
(Check.)
~ Red eyes
(I have seasonal blepharitis so my eyes are frequently red. I don’t’ really know if Ehrlichiosis affected them further.)
~ Rash (in up to 60% of children, less than 30% of adults)
~ Cough
Advanced Symptoms of Ehrlichiosis
As Ehrlichiosis progresses untreated, there can be other more serious symptoms, such as:
~ Kidney failure
(The infectious disease specialist was keeping a close eye on my kidneys because that area was very tender each time he examined me, plus, I had persistent lower back pain.)
~ Respiratory issues like shortness of breath
(I actually did not realize that I had been experiencing shortness of breath, until it was brought to my attention in the hospital. To me, the shortness of breath was just one more facet of me feeling awful. Any exertion felt like I was climbing Mount Everest, so having trouble breathing seemed like part of the whole deal. I was asked if I normally had shortness of breath. No, it was not normal for me. I received oxygen the whole time I was in the hospital and it really helped me feel so much better.)
~ Sore throat
(Check.)
~ Stiffness of the neck
(Check.)
~ Abnormal sensitivity to light
~ Neurological abnormalities beyond confusion
~ Abnormalities in blood clotting
All kinds of testing were done immediately when I was admitted to the hospital—so many tests that I don’t even remember them all. Tests for strokes, blood clots, and much more were conducted.
I also received intravenous (IV) antibiotics from the moment I was admitted to the hospital, a treatment that is reserved for more severe cases of Ehrlichiosis. So, as you can see, I had most of the basic symptoms of Ehrlichiosis, but also some of the more advanced symptoms.
“The diagnosis of ehrlichiosis must be made based on clinical signs and symptoms, and can later be confirmed using specialized confirmatory laboratory tests. Treatment should never be delayed pending the receipt of laboratory test results, or be withheld on the basis of an initial negative laboratory result.”
Although knowledgeable doctors test immediately for Ehrlichiosis (and other tickborne illnesses), positive confirmation can take days. (There can also be false positives and false negatives for some tickborne illnesses, but that is not applicable to my case.)
Our local hospital sends its testing results to the Mayo Clinic for validation. I was tested on my hospital admission day, a Saturday, and the Mayo Clinic returned its confirmation that I had Ehrlichiosis on the following Wednesday.
Time is of the essence in administering treatment that will provide a full recovery, so physicians rely on the clinical indicators via lab work, the patient’s symptoms, and the patient’s answers to their questions, which help further “define” their symptoms. As you can see from my timetable on getting confirmation of the Ehrlichiosis diagnosis, waiting could considerably delay treatment—and impede a complete recovery.
The clinical indicators for Ehrlichiosis include an abnormal decrease in white blood cells (known as leukopenia), a low number of circulating blood platelets (which is known as thrombocytopenia), and/or an abnormal increase in the level of certain liver enzymes (referenced as hepatic transaminases). I had all three of these clinical indicators.
I was quizzed extensively and repeatedly on my activities and symptoms while I was in the ER and later after I was actually admitted to the hospital.
A few of the key questions that I was asked were:
What have your activities been the last several weeks? Where have you traveled recently? Our quick road trip had been to North Carolina. Before that, we had camped for four weekends straight at our mountain property on the Shenandoah River.
Do you smoke or have you ever smoked? Do you normally have shortness of breath at home or use oxygen on a regular basis? My answers were “no” and “no.” They were looking for another explanation for my shortness of breath. There was none.
Do you do recreational drugs? Again, the answer was “no.” They were looking for an explanation for my aphasia/confusion. There was no explanation other than my illness.
It seems pretty obvious now that my doctor keyed in on the fact that we’d been camping and that none of the symptoms I was experiencing were normal for me. Those answers and my lab results pointed to Ehrlichiosis, so I was treated for Erhlichiosis. Immediately.
“Ehrlichiosis is a serious illness that can be fatal if not treated correctly, even in previously healthy people. Severe clinical presentations may include difficulty breathing, or bleeding disorders. The estimated case fatality rate (i.e. the proportion of persons who die as a result of their infection) is 1.8%. Patients who are treated early may recover quickly on outpatient medication, while those who experience a more severe course may require intravenous antibiotics, prolonged hospitalization or intensive care.”
Treatment of Ehrlichiosis
Doxycycline is considered the required antibiotic to treat Ehrlichiosis. (Only pregnant women are given an alternative because this medication can be harmful to the fetus.) Doxycycline has always done a number on my gut, but the infectious disease specialist made it clear that I had to take it to eradicate the Ehrlichiosis. Hence, in the hospital, I was given higher dosage of Immodium (than the over-the-counter remedy) as well as doxycycline.
Once home and on oral doxycycline, I relied on VLS#3, a probiotic medical food by description. Boy, did the VSL#3 work! Having tried probiotics to combat the woes of taking antibiotics too many times in the past, I was amazed at how well VSL#3 worked. (Remember that whenever you’re taking probiotics in conjunction with antibiotics, you take the probiotics several hours apart from when you take the antibiotics.)
The typical course of Doxycycline for Ehrlichiosis is 10 days, or longer if you are more severely ill. I was on it for 15 days.
Because I was also severely dehydrated, I was on a sodium chloride IV the entire time I was in the hospital. I was also supplemented with potassium, both via IV and via special orange-flavored potassium drinks that I drank every day.
Incidentally, I’m one who normally has plump veins, which phlebotomists love, but that was not true while I was dehydrated, of course. The nurses had to move my IV numerous times during my stay. I still have a bruise from where the last one was located, even though it’s been a month since it was removed. (Needless to say, I now have a better understanding of and more heartfelt empathy for folks with small veins and compromised veins.)
What I Knew About Ehrlichiosis Before Getting My Diagnosis
I knew of this tickborne illness because our last collie, Sonny, actually had Ehrlichiosis and other tickborne illnesses, including Lyme. He was treated with antibiotics for that illness and other tickborne illnesses. His treatment was also Doxycycline.
I also had a personal friend who had Ehrlichiosis—and a very serious case of it. She and I don’t see each other that often and aren’t connected via social media. Therefore, I wasn’t around her or aware of what was going on when she was actually experiencing her illness. (I wish I had been, so I could have helped her family more as she also happens to be gluten free.)
Months later, when she was fully recovered and told me and other friends about her own Ehrlichiosis experience, I really did not fully “take in” what she had gone through or, frankly (and rather sadly), even remember her particular diagnosis.
Her husband, who is also a longtime friend, reached out to me via Facebook after he read about my Ehrlichiosis diagnosis on Facebook. As bad as my own experience was, his wife’s case of Ehrlichiosis, was far, far worse than mine. I ended up spending 5 days in the hospital—in a regular room. In contrast, she spent 7 days in the intensive care unit (ICU) at our local hospital and then 5 more days in a regular room. She remembers little of her time in the hospital.
Clearly, Ehrlichiosis should never be taken lightly.
As shared above, Ehrlichiosis does, in fact, kill people—about 2 % of them in fact. That might seem like a very small number unless you’re one of the folks severely affected by Ehrlichiosis—or one of the 1 % with celiac disease. To be clear, Ehrlichiosis and celiac are in no way related, but when you already know you “hit the lottery” with celiac and are “very, very ill” with Ehrlichiosis, you begin to wonder about your ability to beat the odds.
And, again, “very, very ill” were the words that I kept being told by Dr. Ali. Goodness knows, I felt very, very ill.
Do I Remember a Tick Bite?
I do remember pulling a tick off of me on one of those camping trips and throwing it into our campfire and then washing my hands with dish detergent. The tick was not very attached. When I told Dr. Ali that, he said that specific tick may or may not have been the instigator of my illness.
He stated that typically ticks must be attached much longer (at least 24 hours) to cause health issues. Admittedly, that factor is baffling to me as I am hyper-vigilant about checking for ticks when outdoors and after being outdoors. I simply can’t imagine having a tick on me for that long.
Can I Get Ehrlichiosis Again?
Yes, one can get Ehrichiosis more than once, if you are infected by another tick carrying Ehrlichiosis bacteria. Having had Ehrlichiosis previously does not offer you any immunity to future exposures.
On the positive side of that equation though, if you’ve been healed of Ehrlichiosis from one exposure, you cannot have a return or “flare-up” from that initial exposure. That’s why my current lab reading of “normal” for my liver enzymes is so very important.
My Past Negative Experiences with Doctors Also Kept Me from Seeking Help Earlier
I spent so many years going from clueless doctor to clueless doctor before I got my gluten diagnosis, that I now find myself very skeptical of the “expertise” of many doctors. When there are complicating factors like additional food sensitivities and hormones impacting my health, I’m even more reluctant to go to any doctor who hasn’t earned my trust and doesn’t know my health history.
I typically know my body well and actually can figure out what’s behind odd symptoms most of the time. Case in point, a few years ago after a 24-hour hospital stay for chest pains and a complete cardio workup (all checked out fine), I was the one who figured out that I’m in the 2% of women who get chest pains from natural progesterone. Go figure. (Note that 1% to 2% range again. Obviously, I am very special. Ha!)
I think my cautionary feelings are understandable given my personal medical history, but perhaps I might not have suffered as much if I’d sought medical help earlier. Of course, it’s also possible that I could have sought help and not encountered my Infectious Disease Specialist/Miracle Doc, Dr. Ali, and been sent away with an incorrect diagnosis of a flu or a virus. That scenario would have likely led to a very bad outcome.
The fact that the Ehrlichiosis had progressed so far by the time I did go to the ER helped ensure that I got immediate and proper care. I don’t really recommend this course of action though. Take these symptoms seriously and seek medical treatment until you get answers and treatment.
Gratitude
I can obviously never thank my Infectious Disease Specialist, Dr. Ali, enough. For his wealth of knowledge and lack of hesitation. The fact that he is also a very kind and gracious man with a gentle bedside manner helped a tough diagnosis and treatment go much more smoothly. Dr. Ali is from Ethiopia. I am so very grateful that he is here at my local hospital.
Mr. GFE did so much when I was ill. He quickly became reacquainted with the washing machine, dryer, dishwasher, and vacuum cleaner, and, also, took care of me (to the point of being ultra “buggy” LOL) and our dog. Really, he was awesome, and I know that I wasn’t a very good patient.
Christopher Elbow Chocolates–The “Big Box”!
Son also came home the moment that he learned I was in the hospital (despite my protests) and stayed until I was back home and doing fairly well. Having him home was truly wonderful. He even made homemade chicken soup for me once I was back home. It was fabulous and it’s true that homemade chicken soup really does make everything better!
Even though Son eventually had to go back home and back to work, he’s checked in with me every single day since. He’s an exceptional “kid.”
My mother and sister were at the hospital every day after I was admitted and fed us the first week after I was discharged. And fed us well, I should add. My mother would show up with her apron still on, a cooler, a slow cooker, and many other containers of food–all hot and ready to eat. Mr. GFE very happily gained 5 pounds while she was looking out for us and I felt much better eating a decent amount of healthy and delicious food.
More recently a bunch of gluten-free friends came for a long-planned visit knowing that I would not be able to perform my typical hosting duties. They did everything—and I do mean everything. They shopped when they arrived and then cooked and baked during their whole stay. All I had to do was eat their amazing food creations. They also brought special gifts. I was completely pampered! Plus, the time with them gave me a big emotional boost, of course—which always helps with healing. One friend even did all the laundry before she left. Again, I was totally pampered!
![Special Gifts from Dear Friends [from GlutenFreeEasily.com]](https://glutenfreeeasily.com/wp-content/uploads/2017/09/Tea-in-Nanea-Hoffman-Mug-from-Debi-600.jpg)
The risk of issuing even semi-specific thanks is that you always miss someone. I don’t want to do that. The truth is that so many friends, family members, and gfe readers sent me words of encouragement, cards, flowers, and other thoughtful gifts (even homegrown vegetables!), and checked on me throughout this ordeal. All of you helped me get through this challenging period and I am so grateful to each of you!
Going Forward
Every little step forward still seems like a victory these days. Going up and down the stairs multiple times. Doing laundry (that’s why I go up and down the stairs multiple times!). Walking the dog. (I just took this duty back from our very helpful neighbor who had been walking our Sandy with her miniature dachshund each morning.) Driving anywhere. Preparing and cooking full meals. Standing a lot—especially standing in one place—still really tires me out. The kitchen stool has come in handy!
Plus, I’ll repeat that I still sleep a lot. After having major difficulty sleeping when I was ill and even 2 weeks after I came home from the hospital, I’m making up for it now. My body won’t let me stay up too late. Lying down to rest any time means quickly falling asleep.
I am still wearing pajamas slightly more than usual. Putting on “real clothes” still feels somewhat special. (Yes, I do wear real clothes for going out in public.)
And, of course, any time one’s life is disrupted by illness, recovering and getting back to real life makes one appreciate all the “little things” in life that one might have taken for granted before. It sounds cheesy, I know, but it is a reality.
Similarly, going through such an experience also makes one re-focus on what’s important in life and what’s helpful to others. That includes this blog, gfe. I hope to get back to sharing what I consider the really important stuff with you all soon.
When I started blogging, my main goal was to truly help gluten-free individuals live Gluten Free Easily, the gfe way. My mission has always included helping those with gluten issues get diagnosed with celiac or non-celiac gluten sensitivity—or help individuals get on the gluten-free path when a diagnosis is not an option. My day-to-day goal is to share how to live gfe via focusing on real food that’s naturally gluten free, some mainstream foods that happen to be gluten free (and totally safe), and eating very few gluten-free specialty products (those foods labeled “gluten free” and made with special ingredients that tend to cost a lot and more and more have a questionable gluten-free status). I also share recipes—mine and others’—that I think you and your families will love.
I’m mentally ready to get back to it all, but considering how long it took me to write this post, it might take me a while to get back in the flow of regular posts, even when they’re normal length posts. Please be patient with me!
Originally published September 6, 2017; updated August 25, 2020.
Cindy says
Oh my gosh – so sorry Shirley! What a nightmare and how scary. So happy you are doing better now. Thank you for sharing your experience with us so we can be aware. I hope you are back to your “old self” soon. Hugs!!
Shirley Braden says
Thanks so much, dear Cindy! I really hope my post does help at least one person get diagnosed and diagnosed earlier than they might have been otherwise. My “old self” is out there waiting for me to reinhabit it. 😉
Hugs back,
Shirley
Mary says
Dear Shirley, thank you for sharing your journey! I am so sorry you had to endure all that and so glad to hear you are recovering! You are such. A special
Light in this world! I appreciate you and how your blog helped me learn and adjust to gf living! Feel your heart and how you know you are alive and just stay in that place as you rest and recover and renew yourself! Great power abounds and cover us with Grace with no effort just pure love. I send you blessings and peace and love ! All the best to you and your family and thanks again for being you! Breathe in love breathe out peace alliswell and you are love
Shirley Braden says
Hi Mary–I so appreciate you telling me that my blog, gfe, has helped you in your gluten-free journey! And thanks so very much for all your very kind and uplifting words, dear!
Hope you have a great weekend!
Shirley
Donna B. says
Thank you for taking time to share this! I’m glad to hear your family and friends came through for you. I hope you continue to feel better every day until one day, you are doing everything you want to and not being held back at all! God bless you!
Shirley Braden says
Hi Donna–I appreciate all your support! Yes, I am blessed with so much support from so many and I know that all this support helps tremendously in my overall recovery!
Shirley
Trish Parker says
Shirley, I truly feel your pain because in July 2016 I gotten bitten by a tick, had the same disease, and I too spent many days in the hospital, seven of which were in intensive care. I have fully recovered now and have a prescription for doxycycline that I keep on hand for tick bites. If I get bitten, I pop two pills and can relax as long as the tick hasn’t been there over twenty four hours. And you can bet that I check thoroughly now everytime I work in the yard. I am so glad you’re better and on the road to full recovery. Besides being gluten free, we now have one more thing in common! Take care of yourself!
Shirley Braden says
Hi Trish–I’m sorry I didn’t get my summary of your personal story quite right. I wanted to share it briefly but didn’t want to bother you by reaching out for details. I will correct the info I shared. Is the method that you use with doxycycline something that your doctor advises? It certainly sounds like it would provide some peace of mind, although these experts keep saying that we don’t usually have to worry unless the tick has been attached for 24 hours or more, right? Finally, I have to say that I’d rather we didn’t have this particular factor to share, dear! 😉 Life is unpredictable and often challenging! I appreciate your words of encouragement, dear, but sure wish that you hadn’t had to go through all you did to be the voice of experience though!
Shirley
Suzann R says
Dear Shirley, Thank you so much for opening my eyes to this. I had no idea such a thing even existed. I’m so sorry that you had to go through all that & very grateful that you are on the mend. I know that you are not one who usually blogs a lot about personal things (which I appreciate), so when I saw this I knew it had to be important. I read every word! I hope you continue to improve and fully return to your usual fabulous self!
Shirley Braden says
Hi Suzann–I’m really glad that you found my post so helpful. My guess is that very few folks know about this particular tickborne illness. Last, thanks so much for your generous words of support on my blog, me, and my healing! I can’t tell you how much they mean to me. 🙂
Shirley
Charlotte Moore says
Oh my, what an ordeal you have had and still having. I am sos sorry you had to endure all this. Very scary situation to say the least. This has been summer for surgeries in our family. My sister and our son’r girlfriend. I feel I have been at the hospital, cooking or cleaning my summer away. So thankful I am able to help them.
You take care of your self. Thank the LORD for all the earthly “ANGELS” you had to help you. Sure makes recouping a lot easier.
GOD BLESS!!
Shirley Braden says
Hi Charlotte–Thanks so much for your sweet support! Earthly angels do indeed make everything better and I have more than my fair share of them. 🙂
I’m really sorry that it’s been a rough summer for your loved ones. I know that they have sure appreciated you as one of their Earth angels though! Hope all the surgeries are behind y’all now.
Shirley
AngelaS. says
So glad you are on the mend!
Shirley Braden says
Thank you so much, Angela!! 🙂
Shirley
Donna Isbell says
I understand your experience with this terrible disease….I too have recovered from ehrlichiosis It was very difficult for me for my strength to return normal but don’t be discouraged it will your already health conscious and understand the importance of nutrition …thanks for sharing we will remember you in our prayers
Shirley Braden says
Hi Donna–Wow, I’m so sorry that you went through Ehrlichiosis as well!! I wonder what percentage of individuals get it. I don’t think I’ve seen that stat. I’m sorry that your recovery was so challenging, too! I appreciate you giving me the quick pep talk on the best way to get better and your prayers, of course. I keep remembering how far I’ve come thus far and that keeps me encouraged and going!
Shirley
Trish says
At breakfast I was able to read your post from start to finish and I see you specifically mentioned my case of this tick sickness. It sure is a bad bad memory! You will be in my thoughts for the next few months as you recover, but you WILL be back to normal soon! Based on my experience, I promise!
Lisa says
I am so sorry you had to go through all of this, Shirley! So happy to hear you are on the mend and Dr. Ali was at the right place at the right time! I love how you have such a wonderful group of friends and family who have taken very good care of you as well. I hope you feel better and better each day and are back to 100% very soon. Thinking of you!
Shirley Braden says
Hi Lisa–Thank you, my friend! Yes, despite this terrible condition, I really had and still have so much going for me. I so appreciate your support and words of encouragement, Lisa!
Debbie says
Oh my gosh Shirley, you’ve been to hell and
back girl ! So glad you’re on the road to recovery, and so glad you had such a smart wonderful Dr. Sending prayers your way. Hugs, Debbie W.
Shirley Braden says
Hi Debbie–It definitely felt like that! Thank goodness our memory does not let us remember “everything” or remember everything vividly, right? My symptom of confusion helped a little with that. 😉 Thanks so very much for your prayers and hugs, dear!
Shirley
Linda Daniels says
Oh, man. I’m so sorry you had to go through all that! Thank god you got treatment. Sending you all the good vibes for a smooth recovery. Nerdmaste made me laugh, Shirley. 🙂
Shirley Braden says
Hi Linda–Thank you!!! Mr. GFE deserves SO VERY MUCH credit for getting me to the hospital. I hesitate to think what might have happened if he had not. That Nerdmaste mug is fantastic, isn’t it? The “divine awkward” should always be embraced. 🙂
Shirley
Sandi says
I just shared with our medical clinic so everyone stays informed. I am so sorry you went through this Shirley and I am really glad you are on the mend. It is so important for anyone bitten by a tick to save the tick in a baggie and have it tested. Any tick can be infected with several different bacteria and depending on which, some meds are more effective than others.
Shirley Braden says
Hi Sandi–Thank you for spreading the word! We truly get ticks all the time here and I honestly don’t know of any places around here that will test ticks. That’s never even been recommended by any doctors I’ve spoken with or read about in local articles on tickborne illnesses. I do see that it would be the most effective in getting one the most appropriate meds, of course. Glad to hear that you all have that option in CA.
Shirley
Leslie Gaylord says
Oh my gosh scary ! Thank you for sharing and I’m so glad you are on the mend . Blessings to your dr and your supportive family . I’ll be thinking about you
Leslie
Shirley Braden says
Thank you, Leslie. Yes, truly scary. I really appreciate your support and words of encouragement!
Shirley
Andrea Wyckoff says
Oh my goodness! You have been through so much!! I so appreciate your sharing this experience with all of us, helping us to be more aware of this tick borne disease too.
Not to try and take away anything from your experiences at all, but I can relate to *some* of this, as far as my worst crippling flares with ankylosing spondylitis in the past, where I was bed ridden and unable to walk, and ended up at the hospital, but this experience you have shared takes it so much deeper, into even loosing cognitive abilities! And you having to be in the hospital and on bed rest for so long!! I sincerely hope continue to improve each new day.
Much love!! It makes me happy to read about your wonderful support network helping your through this life threatening experience!!
Shirley Braden says
Hi Andrea–I appreciate your love and support! Even with my amazing support network, there can never be enough support and words of encouragement IMO. Thanks, too, for your comment regarding AS. Too many of us have health crises which help us relate to the effects of Ehrlichiosis. I wish you weren’t one of them, dear, but I am thrilled that part of your life is behind you!
Shirley
cheryl says
So glad you’re healed–even if not yet fully recovered. I’m so appreciative that you shared your story. Ticks pack a whole lot of evil and harm in a teeny tiny shell. I’ve had Lyme 2x so I tend to be careful…and then get a little lax, and have been totally back on the ball with treating clothes with promethrin and showering the minute I get in.
So very grateful that the stars aligned and that you were able to get the support you needed most, and angels like your dr to help you along the way.
Shirley Braden says
Thank you, Cheryl! Ticks do sure pack a lot of evil in their tinyness. My heart goes out to you on having experienced Lyme twice. I can understand being super vigilant and then just wanting to escape the burden of it all for just a bit. And now I’m headed for a shower as I’ve been out walking the dog!
Shirley
Angela Sommers says
Dearest Shirley,
I am so sorry to hear what you had to go through. It sounds like such a nightmare. And yet, here you are, with God’s blessings and your wonderful husband and a very great doctor and medical team you are starting to get better. Celebration!
We had some excitement ourselves, albeit not nearly as personal as you. The Westcoast seems to be burning up and the fires got so close that the air quality became “hazardous to health” (Index 375) and we retreated to friends in California.
But enough of that, this is about you and your overcoming such a serious illness! A celebration is in order! With a big hug and lots of love,
Angela
Shirley Braden says
Thanks, Angela. You are such a dear! The wildfires are tragic. I’m so glad you have a friend’s home to retreat to, but I hope the fires end soon so you can return home. If only we could funnel hurricane rain to the wildfires, right? Now you make me want to celebrate all my blessings. Maybe ice cream is in order? 😉
Shirley
Lisa Anderson says
Shirley,
Thanks for sharing your story. I am so glad you had a good ID doc who made the right diagnosis quickly. I’m also very glad to hear that you continue to improve.
Hugs–Lisa
Shirley Braden says
Thanks, Lisa. I really appreciate all your support! The good ID doctor was the game changer for me for sure.
Shirley
Frances says
All the best to you after such an ordeal. We have ticks year round in Australia but unfortunately the govt. and health dept. not acknowledging any disease exists from a bite.
Shirley Braden says
Hi Frances–I never really thought about Australia having ticks year round. I guess your winter doesn’t get cold enough to make them disappear for even a few months. I do understand the frustration of not having tickborne illnesses recognized. People who deal with Lyme in the U.S. will tell you that our CDC is woefully behind/ignorant in acknowledging all there is to acknowledge about Lyme. That makes these illnesses even more difficult to manage as doctors look to the govt and medical agencies, and usually won’t act outside (e.g., diagnose and treat) what they acknowledge as valid. 🙁 I hope that changes for Australia sooner than later. Last, thanks so much for your good wishes!
Shirley
Erin Smith says
WOW! Shirley! I had no idea you were that sick. I am so sorry you had to deal with all of this and hope that you are on the mend. It sounds like you have a wonderful support system around you to help you get better. Tick borne illnesses are so scary because they can become so severe. I am sending you healing thoughts from the West Coast. Please let me know if you need anything!
Shirley Braden says
Erin–I appreciate your comment and your email! My knowledge of tickborne illnesses before this was fairly limited. I realized they could become severe—and have seen many friends and acquaintances suffer their consequences—but experiencing such a medical condition one’s self is always eye opening!
Thanks again!
Shirley
Anne Sweet says
Oh, Shirley, I am just now learning about your health ordeal this summer. I am relieved to know that you made it through and are regaining your health. You are, and always have been, an inspiration to me. Thank you for all that you’ve done and continue to do for Celiacs like me and the entire gluten free community. Best wishes, and stay well!
Shirley Braden says
Hi Anne–It’s so good to hear from you, despite the circumstances! You are so very generous, dear. Thank you for all your kind words of support! You know this work is a very important calling for me. I’m glad this illness is moving further and further behind me, so I get to keep doing it! Hope you are doing well!
Shirley
Nancy says
Wow what a horrible experience. I’m glad to hear that you are on the mend. What a wonderful support system with friends and family to help you through this challenge. Wishing you all the best for your continued recovery.
Shirley Braden says
Hi Nancy–It’s good to see you again, even if it’s to respond do a somewhat sobering post. I do have the best support in the world! Thank you for being part of it as well! 🙂
Shirley
Donna says
Shirley,
Thank you for sharing . We have had our yard sprayed for fleas & ticks for several years until this year . Those ticks worry me . So far I haven’t seen a tick on me. Your advice to shower immediately is the thing to do after being outside . Hopefully a cold winter will help get rid of some of the ticks. I’m glad you are doing better . I really enjoy your blogs and recipes . Thankful you had a good Doctor to help you . Take your time recuperating . Take care of yourself .
Shirley Braden says
Thanks so much on all, Donna! I truly appreciate your good wishes and generous words on gfe. 🙂
While we wish that we could avoid such “pest” treatments (pest doesn’t seem to be a strong enough word these days), it doesn’t seem to be possible anymore. My fear of tickborne illnesses is far stronger than my fear of methods to control ticks now. The place that we’re probably most exposed to ticks though is our mountain/river property. Friends are educating me on making tick tubes. Might give those a try for our property.
Shirley
Judee@gluten free A-Z Blog says
Shirley,
I knew something was wrong because you hadn’t posted in so long. I kept checking and checking! Thank God you are ok despite a long healing journey ahead of you.
I totally understand your distrust of doctors. After my long history of doctors not having a clue, I’ve learned to take of myself!! I am so glad that you posted to tell us what was going on. I guess we don’t realize how we become ” blog” friends and feel like we have a relationship!!
So glad you are back-and again thank God you are ok..
Shirley Braden says
Hey Judee–Awww, it’s so sweet to know that you have been looking for me! Thank you all your sweet words of support, dear! I’m looking forward to getting totally back to “normal.” Right now, my body is in control. No more “powering through” when my body says, “Take a nap, Shirley!” LOL, but true. I figured that so many of my gluten-free friends would understand my initial reluctance to seek medical help. It’s a shame that so many of us have experienced the same.
Shirley
Brandae says
Shirley,
Thank you for sharing your experience and story with us. I took a hiatus from Facebook most of the summer so had no idea you weren’t on very often either. I cannot imagine the toll that this illness has taken on you and your family but am so grateful that it has resolved and you are feeling better. It sounds like you are surrounded by very special and wonderful people. Many hugs to you!
Brandae
Shirley Braden says
Hi Brandae–I bet you enjoyed that hiatus from Facebook. Facebook … a terrific way to stay in touch with friends, the news, and drive yourself crazy. 😉 LOL That said, I’ve missed seeing you! Thanks for all your support, dear. I count you as one of those special and wonderful people!
Hugs back,
Shirley
Laura says
I had this disease. It is one of the two times in my life I was really, really sick. Luckily, I live in CT and my PC doctor is part of the medical group that discovered Lyme disease (they are located in Old Lyme, CT, hence the name). He suspected a tick-disease but there were so few cases back then, I became part of a study of Erlichiosis. I still can’t tolerate doxycycline since then. I had to take other medicine to take the doxy. Live and spleen had enlarged to dangerous levels. My high fevers made it so I could hardly lift my head from the bed. I must have had a tick land in my hair because I had no evidence of a bite. There were over two weeks of possible incubation before I noticed symptoms. And when the symptoms started it was like I was fine and then hit with a truck. There was a heat-wave that summer so I thought it was just the heat… Glad you are feeling better!!!
Shirley Braden says
Hi Laura–First, welcome to gfe and for the good wishes! I’m sorry that we have Ehrlichiosis in common and, wow, you truly are an Ehrlichiosis pioneer. An unwanted distinction for sure, particularly given your horrible symptoms. Thank you for sharing your experience with everyone here. I keep thinking that the more personal stories of Ehrlichiosis that folks hear, the more likely they are to consider that as a possibility if they get such symptoms. So thank you very much for taking the time to share your story, Laura. I’m so glad that you got excellent medical treatment during a very tough time when Ehrlichiosis wasn’t even known.
Shirley
Nance says
How nice to see you back on the blog! That means yet more Progress in your Recovery. I know you will continue to pace yourself and not overdo, even as you are anxious to resume your Normal Life. How well I understand that need for Patience.
Take good care. I think of you so often.
Shirley Braden says
Hi, Nance–Thank you! Well, I will confess that sometimes I try to overdo (because the force to get stuff done and do things is STRONG), but my body smacks me down pretty quickly. 😉 For example, it’s demanding a nap right now. I will listen, albeit a bit reluctantly. You and I both often suffer from a deficiency of patience so I hope we’ll both be back to 100% soon!
Shirley
Michelle says
Hi, oh my goodness, glad you are on the mend. Don’t worry about me, I will still be here in the background cheering you to good health or sharing a recipe you happened to post on Facebook. Don’t rush things.
Shirley Braden says
Hi Michelle–It’s good to see you here on gfe again! I appreciate you being in the background, dear. Thank you so much for your sweet, supportive words. 🙂 I think I’ll easily heed your advice as my body won’t let me rush anything these days. 😉
Shirley
Alisa Fleming says
Oh my goodness Shirley! You poor thing – what a terrible ordeal. I’m so glad that you found out what it was and are on the mend. What a toll though – rest and feel better soon. Sending you hugs and wellness wishes.
Shirley Braden says
Hi Alisa–Thanks so much, dear! I’m learning more and more about Ehrlichiosis from many sources, especially gfe readers who have also had this awful illness. I am definitely on the mend though and so grateful for that. I’ll know I am almost at the end of healing when I don’t have to take my daily nap any longer. 😉
Shirley
gfchopstix says
What an ordeal, Shirley! Wishing you well in your healing process, and thank you for sharing your awful experience with us, to make us all more aware of the dangers of tick bite fever.
Looking forward to reading more from you once you’ve completely recovered.
Take good care.
Shirley Braden says
Thanks so much for the kind words and good wishes! I’m getting there. 🙂
Shirley
Marie says
August of 2018 was in ER of very same symptoms and admitted in a Florida hospital while on vacation( I live in Tennessee) I too, was very fortunate to have a specialist that knew about Ehrlichiosis. Turns out, I was also infected with Lyme Disease. The recovery, as you know, has been slow.
Shirley Braden says
Hi Marie–First, welcome to gfe although I’m so sorry that our shared diagnosis of Ehrlichiosis brought you here. How ironic that we both were in the hospital in the same month last year and both got ill while on vacation. I’m so very happy that you too dealt with a specialist who knew both Ehrlichiosis and Lyme. The recovery is very slow and Lyme complicates that so much more. You have to listen to your body and do what it says, that’s for sure. I found that I couldn’t push through for special events, even if I tried. That was hard to accept at times but definitely a blessing. I feel like I’m mostly recovered and feel “normal” most of the time but then seemingly small things can set me back and I’m back to feeling exhausted and taking naps. With celiac (especially pre-diagnosis), I’ve always had an overactive immune system, just ready for a flare anyway. Today I’ve felt worse because of getting so very many mosquito bites while camping this weekend. 🙁
Sending you good thoughts and healing hugs, Marie!
Shirley
Jake says
Hi Shirley, been looking for answers for 8 months now..finally diagnosed with anaplasmosis, ehrlichisosis and rocky mountain spotted fever (i dont know how im not dead to be honest). Been on doxy for a two weeks now, my titers have lowered and seems like the antibiotic is working. How are you recovering now a year later? When did things start getting better. I still feel rough. Hope all is well.
Shirley Braden says
Hi Jake–Welcome to gfe. I’m so sorry that we have ehrlichiosis in common and also sorry that you’re dealing with two other tickborne illnesses in addition to ehrlichiosis. That’s a whole lot to be dealing with for sure and 2 weeks in is so early in one’s recovery.
The doxy can work magic but it is hard on ones body, especially one’s gut. I took high-quality probiotics, with my doctor’s endorsement, while I was on it and that helped me tremendously. You may wish to do research and please consult your doctor on any such changes to your protocol, of course.
Thankfully, I am fully recovered. I appreciate you asking and your kind words! Sometimes I question whether my stamina has completely returned but that’s more a matter of not being quite as active as I was before ehrlichiosis due to other circumstances versus a result of ehrlichiosis itself.
Everyone’s recovery rate can be different, of course. Listen to your doctor and listen to your body as you’re recovering. In my case, I had no choice but to listen to my body. When it said “take a nap,” I simply had to do it. There was no forging on. A hard and tough lesson for most of us. And I think at least part of that has hung on. When my body says to take a nap, which doesn’t happen that often, I can fight it to some extent, if needed, but there are still times when I have to succumb and rest.
I’m wishing you all the best in your recovery, Jake! I believe there are forums online for tickborne illnesses. While forums can be tricky as far as accepting certain user-provided info as gospel, they also can provide helpful support and tips at times. As is the case with most illnesses/life experiences, one always has to be one’s own best advocate and use common sense when “dissecting” such info.
Take care. I hope you’ll report back to let me know when you’re doing much better—and I hope that will be soon!
Shirley
Vincenzo says
I got sick starting with a syncope episode on one of my vacation days. ER said nothing wrong, just maybe stress. i started to feel sick beginning with eye issues and worse within the following weeks until my eyes could not stand any light. I got a stiff neck and symptoms all over my body. I got vertigo, too. it took a10 months to get a proper diagnosis for Ehrlichia, got treated for 3 months. very severe..I am still having some symptoms and trying to recover in full. it’s been almost 20 months since it started and hoping it will go away soon(going into 6 months post treatment). be careful out there and never stop questioning doctors.
Shirley Braden says
Vincenzo–Thanks so much for taking the time to share your story here. I’m so terribly sorry that you’ve been through such an ordeal and are still experiencing symptoms. All of us should definitely remember your advice.
Sincerely hoping for full healing for you soon,
Shirley
Vincenzo says
thanks. Shirley. at this point I am still fighting to resolve the eye and balance problems, pains and aches have disappeared.
GENEVA Cockrill says
Thank you for sharing. I was one of those severely infected. I was in the hospital for 75 days. I was in a coma for about 24 days of that. My kidneys failed. My heart stopped at one point. It is by Gods grace that I am still here. I had never heard of and still can’t spell correctly. I am going to re- read your story and all the comments.
Shirley Braden says
Hi Geneva–Thanks so much for taking the time to share your story but wow, what an ordeal you went through with your Ehrlichiosis experience! I’m so terribly sorry that you had such a harrowing experience but I’m so very grateful that you survived! I know from my comparatively minimal experience that even the retelling of it and remembering still remains a bit traumatic. Therefore, I’m sending you some big virtual hugs! Had my husband (very sadly, he has since passed) not taken me to the ER, I don’t know how my story would have ended—not well; that’s for sure. I firmly believe that he saved my life by taking that action and I was further saved by being assigned an infectious disease specialist who was an expert in tickborne illnesses. I have heard about more local folks here being diagnosed–some seemingly almost immediately. I wonder if testing has changed since my experience as the specialist told me he had to start treating me BEFORE he’d get test results back because they would take too long and there would be no adverse effects of going ahead and treating me. I remain grateful for my outcome, as you are. Thank you again so very much for taking the time to share your experience. Increasing awareness can only be a good thing.
All the best,
Shirley
Ellen Light says
Hello, I ran across your story in researching my own diagnosis of ehrlichiosis. I am four months into my own journey. We have lived in the woods of north central Florida for 24 years and have had numerous encounters with ticks over the years. This was all a first though. I fell ill in mid July and initially was treated for a UTI. After only days on Bactrim I was getting worse not better. I had abdominal pain and a terrible headache that would not stay away and a fever that would not go down.
My doctor wanted tests run immediately and referred me to the ER where they could be ordered without delay. I wound up in the ICU for two weeks. Initially I was given three different antibiotics while they were trying to figure out what it was. I was dehydrated from the fever and vomiting. They gave me IV fluids and wound up flooding my lungs and they added oxygen and meds to help me shed the fluid. This all sent me into A-fib. They thought for a while that I may be developing pneumonia too. My fever went up, I was continually vomiting (we later attributed to the oral doxycycline) I was totally disoriented – could not tell the year, the president and other questions. My family and I all thought I may not make it. My husband was the one that suggested ticks to the team of specialists working on my case. The doxy kicked in and I began to improve – except for the terrible nausea.
Ultimately – on my last day in the hospital – they got the result of positive for ehrlichiosis. I was discharged and continued with the doxy. I began to gain my strength back after a fall off of our porch opened my eyes as to how weak I really was. I was not allowed to go near stairs – even one – by myself. Through all of this my husband of nearly 50 years and our two sons were so supportive and helpful.
Fast forward several weeks and I returned to work and a somewhat normal existence. I still had brain fog and some weakness. Then I was returning home one day and glanced down at my hand while opening the gate to our driveway. The strangest thing happened – my hand did not appear to be mine. I don’t know how to describe it any other way. That passed fairly quickly but was followed by extreme awkwardness with my hands for the next hour or so. Then I kept failing at entering my password to my laptop. I called my doctor who thought I may be experiencing a TIA. He indicated that if anything else happened I should go to the ER immediately. I gave up and went to bed hoping I would feel better with rest.
The next morning I felt somewhat better for a while. Then I started feeling “off”. My husband kept asking me if I thought I should go to the ER. I couldn’t make up my mind. He finally said he was taking me. As we got in the car I found that I could not speak normally. I could think ok but my words were just gibberish. He was racing to get me to the ER and I was spouting nonsense words trying to tell him to slow down.
Once there, I could not answer any of the questions they were asking me. They did a CT-scan and for some reason gave me one doxy. I was immediately admitted (different hospital this time). They ordered an MRI, then a second one “with contrast” this time, a spinal tap, an EEG and numerous blood tests.
The upshot was two neurologists who were very interested in my “alien hand” experience said my MRIs and EEG were normal as was the CT. No sign of stroke. Then the infectious disease doctor came and said that I still had ehrlichiosis. This scared the s#!+ out of me. Especially when she explained that while I had received the oral doxy before that was unable to “cross the blood – brain barrier” and thus it was still in my brain. I should have been given the I.V. form. She explained that that was the only way to reach it. She also informed me that I should have been told previously with the oral, not to drink milk with it. I had told her that milk was the only thing that I could keep down taking the oral. She said that was likely why the doxy had not done the job. The previous hospital had been giving me milk every time I asked for it.
I was sent home on 2x daily IV treatments of doxy for two weeks. My wonderful husband administered the IVs. I am doing much better. However, three weeks post IVs, I am still having odd episodes of one or the other hand or in one instance cheek, going completely numb and extremely awkward to move, as well as the alien hand thing. I have also experienced a couple of episodes of difficulty speaking. And, I don’t know how to describe this, but I feel “dumb”. Like I am not as smart as I have always been.
My infectious disease doctor (from the second hospital) said this may or may not continue but should taper off over time. She said not to worry about it as the episodes always only last 10-15 minutes. She said not to run to the ER except if it does not go away. I have only had two in the past week and a half now.
I’m sorry this is so long but I felt it important that people are aware of the oral vs the IV role in my recovery. I feel that if I had been given the IV form (which my husband had asked them about at the first hospital when I got so violently ill from the oral and was told that that was too expensive – I have insurance which covered it completely at the second hospital) that I would not have ever had the second round of the illness. Everything that I have read about ehrlichiosis indicates that fast treatment is important to avoid the damage of the infection on the body. I am hoping that my damage is not permanent because of the delay in getting the right medicine. I went from mid-July with the beginning to mid-September before starting on the IV.
I felt so “kindred spirit” to you Shirley when I read your story. Thank you for sharing it.
-Ellen
Shirley Braden says
Hi Ellen–I wish I could reach through the screen and give you a giant hug. ❤️ Please do not apologize for the length of your comment. Thank you so very, very much for taking the time to tell your story here, particularly since you are still ill. My goodness, you have been through so much with your Ehrlichiosis experience! First, I am so sorry about what you have been through and that you’re still struggling to fully recover. To be honest, I have so many thoughts reading your personal story and I’m sure others who have experienced Ehrlichiosis will as well (and your experience may well help some who don’t yet have a diagnosis, have similar symptoms that are baffling them, don’t know what questions to ask their doctors, etc.). As my now late husband did for me, your husband saved you, and several times as you well know. I think about folks who are alone (as I am now) while experiencing severe symptoms of Ehrlichiosis and wonder how they could even get to the hospital and get a diagnosis—ever.
I don’t remember an alien body part experience with my own case of Ehrlichiosis but I do recall having such an experience in the past (perhaps when I was having neurological symptoms related to ataxia before I was diagnosed with celiac? I’m not sure). Although that is a startling experience for certain, especially if one has it happen more than once, I have heard of others reporting it also when going through neurological issues.
As far as feeling “dumb,” I remember having that feeling of not only moving slowly after I was discharged and recovering at home but also “thinking slowly.” It just takes time for everything to heal. Has your follow-up testing shown that your active Ehrlichiosis is gone now?
You’re so very right on the proper immediate treatment being critical to whether one recovers, and the doxy IV treatment being the correct treatment once the brain-blood barrier has been crossed.
Both your symptoms and my symptoms demonstrated that had happened before we got to the hospital. That’s why my infectious disease specialist said that the appropriate protocol is to treat with IV doxy immediately and not wait on testing to validate the Ehrlichiosis diagnosis.
I continued on with oral doxy at home and I don’t remember specifically being told to avoid dairy products at the same exact time as I took my pills. (You can consume dairy but not at the exact same time as you take the pills. It should be one to two hours before or after. That’s an FYI to anyone else reading and wondering about that.) It’s tragic that you didn’t get the proper guidance on that fact, which kept you from healing.
I have so many more thoughts, Ellen, reading your story and remembering my own experience but my main thought is that I sincerely hope and pray that time, rest, and proper care will fully restore your health. Please come back and share with us again later if you’d like (or email me if you’d prefer).
All the best and lots of healing hugs,
Shirley