Or "How it took much longer than it should have to find someone to help me."
I remember the first time I mentioned to my doctor that I felt like I wanted to go back to bed after I took a shower. I told her that this wasn't normal for me. For me to bring it up, meant that it was bad enough that it was impacting how I could function during the day. It wasn't just a lazy, sleepy feeling either. It was an overwhelming feeling of not being able to keep my eyes open coupled with my whole body feeling incredibly heavy and weak.
The doc took a look at my routine test results and said that I am in perfect health and my BMI was perfect, so it must be that I had children and was homeschooling. (Gotta love how she threw that in there!) Little did she understand that teaching my children energizes me, not exhausts me. She projected her judgment on me and wrote me off. Three doctors in TN all made the same comment when I asked for help.
So what did I do? I felt like I had no choice but to live with it. They made me feel like I was a hypochondriac. I decided to change my diet and go as organic and as natural as I could. It helped a little but never completely took care of how I was feeling... all the time!
Fast forward to several years later, the fall of 2013 to be exact, and my first black-out episode happened. I was exhausted, not thinking clearly, alone with my kids, had to pull over the car several times within that 45 minute time period, I went home and went to bed. I told several people what happened and yet no one showed a whole lot of concern about it. So again, I just wrote it off as being tired. (In hindsight, I had way too many people in my life just thinking I was being dramatic when in fact I was very sick!)
A few months later, the persistent dizziness started. And I mean persistent! It was bad enough that I decided it was time to see another doctor, who I was convinced would just tell me it's all in my head, but I figured I'd try to get help once again. Before my appointment day finally arrived, I had two more near black-out episodes. Not as bad as the first, but clearly something was very wrong.
The doctor went over my symptoms and I could immediately tell which ones she was dismissing.
Then she took "all in my head" to a whole new level. She started down a path of asking me about allergies, thinking it may be an inner ear thing, obviously ignoring any other symptoms I mentioned. She also ordered an MRI just to be sure it wasn't brain related. Then she prescribed Meclizine
! Desperate to stop the dizziness I took one and it knocked me out. The effects didn't wear off for over 12 hours. Here I was expressing a concern with being able to stay conscious and she gave me something to knock me out. And not surprisingly, my MRI was clean. This doctor did no follow up and didn't even call to let me know about the MRI results. I had to chase them down. In fact, all she cared about while I was in the office was that I made an appointment for a routine mammogram.
is the doctor that pissed me off! In hindsight I should thank her. Because of her horrible patient care, I was more driven than ever to find someone who knew what they were doing. She clearly didn't!
My next doctor was much better. I decided if these regular MDs I saw were all worthless for me, I might as well try somebody different. I went to a local osteopath based on recommendations from friends. I was finally diagnosed with adrenal fatigue through a timed saliva test (I had to pay for that out of pocket because insurance refuses to cover it) and an autoimmune disorder. For the first time in years, I had the beginnings of answers. Little did I know how far I was from the whole picture though.
I started treatment but it wasn't working the way it was supposed to. The osteopath did suspect Lyme as well but the lab only would run the more limited test that leaves out the bands that were removed from testing because those, at one time, were covered by the vaccine they used to have for Lyme. They never put them back in the test when the vaccine was pulled form the market! Why? I would love to know!
I was at the point where I couldn't drive a car. In fact, I could barely function at all. The one time I did try to go out and have a drink with friends, on a day I was feeling a little better, I had a conscious black-out (I have heard it called a brown out) and vowed never to go out like that again. What was most embarrassing was that not one person I was with noticed I wasn't aware of my surroundings. The whole thing scared the hell out of me. I didn't know what to do.
In the meantime, I found a fantastic adrenal book, that I will be reviewing for you all another time. I intuitively went through the micro-nutrient/supplement section and picked and chose what the author outlined to take for what. In my first pass through the book, I now realize, I was completely in a fog. I could barely comprehend what I was reading. However, I did manage to take just enough of what he recommended to start feeling better. My cognitive function came back a little more and I was getting some energy back. And yet, I knew I still wasn't 100%. Far from it.
What made me decide to try one more time to see a doctor was that I started going through a very stressful time. As you all know, stress is awful for even a healthy person and more devastating for someone who isn't healthy. Many of my symptoms were coming back and with a vengeance. And now I had many more to add to the list - off-balance, frequent panic attacks, anxiety, depression, pain, overall achiness, insomnia.... and the list goes on.
It was an ND (Naturopathic Doctor) that finally sat down with me, and after two hours of telling her absolutely every single symptom I could remember, she said "I think you have Lyme, and a couple co-infections." If she had been like any other doctor I had previously seen, she would have pushed me out of her office after her allotted 15 minutes with me. Instead she listened to every single thing I had to say and when I thought I was done, she asked more questions and listed more symptoms I replied with that I didn't even realize were in fact symptoms. Seven vials of blood, another adrenal saliva test, sending my blood out to get the full test for the removed Lyme bands, and 5 weeks later, she was right! There was no doubt that not only did I have Lyme but also the co-infections she suspected. My out of pocket for the tests that insurance refuses to pay for? $500!!! Without those tests, I would never have been diagnosed. How many people have to die of late stage Lyme before things change?
I never had a tick bite. The entire decade we lived in TN, where I contracted the illnesses, I never once even saw a tick. I never had the rash. I didn't even have "typical" Lyme symptoms.
Little do people know that the deer ticks that can give it to you are the size of a poppy seed in nymph stage.
My message to you in all of this is that our medical system is extremely broken. If you have any ongoing symptoms, get to the bottom of them. If a doctor brushes you off and says that there's nothing wrong without testing you, go see another one. Don't stop until you find answers.
Just because you look fine doesn't mean you are. Don't let anyone
tell you otherwise.
I have had a tough couple of weeks. I am sitting here typing this in a bit of a fog after not being able to fall asleep until 2am because my stomach pains were so incredibly bad. Then I woke up, not surprisingly, a few hours later with an excruciating headache. I am sure some of you can relate.
What I find most frustrating is that I look and sound okay but I am really not. The only time anyone knows anything is wrong is if I had been crying for a while or if I openly share what is going on. But as I mentioned before, people think you're a whiner because you are "supposed" to be able to heal Lyme in a couple of weeks, right? Ugh! So... I find the vast majority of people don't even ask. Sorts out your friends real fast doesn't it? Let them go! You'll feel better and it makes more room for the people that really love and value you. Those are the people you absolutely need.
In light of Avril Lavigne sharing a bit of her story in People Magazine, I wanted to mention that according to the few details she shared, it sounds like it was caught early. Even though it was caught early, she suffered for a year from it and, as she states, is only 80% better. If you would like to hear about other celebrities that have been open about dealing with Lyme, here is another article. In that one you will get the picture in how devastating this can be to someone's life for years, especially when it's not caught early. Do note that neither piece mentions the co-infections that are very often given to you at the time you get Lyme. Those can be worse but I will cover those separately later. And yes, I do suffer from those as well.
I have added a few books that I have and will review when I finish reading them. If you want to check them out, go to the Read These! page I created. Hold off on buying them until I review them! However, I can highly recommend the Buhner book that goes into excellent detail about two of the co-infections: Bartonella (stop calling it "cat scratch" disease already!) and Mycoplasma. I have both of those. I haven't read every page yet but as soon as I do, I will post a full review.
Finally, thank you for the emails! Don't be shy though! You can post a Comment with out using your real name if you'd like.
In my first post of Living With Lyme
, I wrote about how misunderstood Lyme disease is. There is an incredible amount of really bad information about it online. That is why it is crucial to get local support from people who have it or have been treated for it in the past. Even then, you have to be careful. There are people who have been treated after a recent exposure who seemed to have rid themselves of it quickly, so they do not understand why you just can't take a quick round of antibiotics and get over it. I have also come across a few who self-diagnosed, although they have never seen a doctor to get to the bottom of their symptoms.
Luckily, I have enough people I have met who truly understand
what I am going through as well as how symptoms, herxing and treatments vary from person to person; especially depending upon what co-infections the little bugger gave you along with the Lyme. If you are in the Massachusetts area, I have good news regarding getting more education and additional support. Come to the Lyme Disease Conference on March 21st!
In February 2014, the Central Mass Lyme Foundation
was founded and just over a year later they are holding the first area conference. I know this is short notice for my fellow New Englanders but if you can make it, please come. Admission the day of is only $10. If you register ahead of time, you can Will Call your tickets for only $7 each.
New England's 1st Lyme Disease Conference! March 21, 2015
Quinsigamond Community College
Harrington Learning Center
670 West Boylston Street
Worcester, MA 01606
Saturday 9:00 a.m. - 4:00 p.m.
Onsite Registration at 8:30 a.m.
For more information visit http://masslymeconference.com/
I thought I was crazy. I noticed, even before I was diagnosed, that on many days I would have great energy in the morning but within ten minutes after getting out of the shower, I felt like I want to crawl back into bed. In fact, that was my first complaint to a doctor when I started having symptoms and it was quickly dismissed. It was in my Lyme treatment research that I came across that it's a known issue to those with Lyme! I wasn't crazy after all!
I have seen a lot of theories about the causes of this: the heat from the shower, the chemicals in the water, the steam, or possibly the way your skin is palpitated by the shower flow. I am here to tell you that ALL of them are wrong in my experience. I take baths and do not have the same reaction. Hot baths make some of my symptoms better. The steam never bothers me. I have well water that is filtered; and not cheaply, because we found that we had high levels of radon in our water when we moved in. My tub is also jetted and I use the jets most of the time so the skin being palpitated doesn't fit the reasoning. With all of these things being true for my baths as well, the theories don't hold up because I never feel bad after a bath.
There is one other possibility I would like you all to consider. When you get cold and your blood vessels constrict, this has a detoxing effect. (For more on the benefits of cold showers visit this site) Is it possible that this is why the sudden drop in energy after a shower for us Lymies? We get out and are chilly for a few minutes before we get dressed? I am always so well heated from my baths that I don't get cold when I get out. Maybe the most simple explanation is the most obvious one. Sometime I'll take a space-heater into the bathroom with me to test that theory and will let you all know.
Here is a great video interview from Michele Miller from The Central Mass Lyme Foundation.
After not “feeling well” for several years, I finally found a doctor… a couple actually… that would take me seriously. To make a long story short, I have been diagnosed with Lyme and two co-infections. My exposure was over five years ago when we were living in TN. I never had a bite, the typical rash, or ANY of the “typical” symptoms. In fact, the symptoms that brought me to see one doctor after another were for a different issue and my diagnosis came up because my treatment for my other issue wasn’t working the way it was supposed to. I was fortunate enough to finally find a doctor who, after taking a complete history of my symptoms, ordered a bunch of tests that hadn’t been ordered and knew enough to run the Lyme tests as well.
If you are reading this and have Lyme you know how incredibly isolating it is to have this diagnosis. People think it’s just something you get, take antibiotics for and are done with. I am writing to reinforce how far from the truth that is.
This is all the CDC will admit to:
“Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well.”
No wonder so many people suffer alone! Not only does the CDC ignore everyone who has it but, like many other things, suggests that it can be diagnosed easily, then treated just as easily. After reading too many stories about people suffering with it, dying from it and committing suicide because of it, I decided that I need to share my story as well.
Back when my father was diagnosed with Leukemia, people understood, at least generally, what that meant. (And even so, my father wasn’t very quick to tell people.) During the times where my father was going through treatment, friends of the family would bring by dinners, offer to drive the kids to their activities, send get well wishes, etc. Between my step-mother and myself, we had it covered, but it was nice to have some help. The stress was tough enough to deal with.
What I will never understand is that a lot of people don’t see Lyme as anything serious, even when someone tells them point blank what is going on with them. People don't want to believe them. It’s unpredictable, often very debilitating and because no one understands what you are going through, it’s isolating. I have spent more days in bed than out over the past five of weeks of starting treatment for it. People that think they get it, can also think that there’s no reason for that sort of reaction to treatment. The truth is, everyone reacts differently and there is no one treatment that works for everyone.
Do you want to know more? Do you know someone who has it and really care enough to understand? Go here for an introduction – The Controversy That is Lyme Disease