It's all in your head.
These are the types of questions that I receive from loved ones. And I certainly feel their frustrations. I am frustrated. "Five years", I outcry, "I've been chronically sick for five years!"
February 22nd, 2011 I gave birth to my second child Reese. She was born healthy. However, in a short 2 weeks she and I would start our string of sicknesses that would last 2 years. I was told I was postpartum. Again faced with it's just anxiety or stress (all in your head). Okay, I took the medicines I needed to help with that. But we were still sick with viruses, flu, anything and everything, but nothing that anyone would suggest Lyme. Matt became frustrated with me, not understanding, thinking I was somehow causing my illnesses. He would go to work early, and leave late. He didn't want to be around a sick mom and infant and a toddler screaming for attention. Seriously, can you blame him? I can't! But at the time... those two years were the hardest years of our marriage. I was certain the house we were living in was making us sick. Thanks to God, He gave us a new home in Bristow that was only a couple of years old. We did get better in some ways, but not completely. When Reese was 2 1/2 she got her tonsils and adenoids out and she got a lot better than me and she finally started sleeping through the night. It was then that I realized how sick I really was. And it was then that I began my journey to find out how to get better.
In 2013, I was having extreme digestive issues and I began to see neurological symptoms. At the time, I didn't know they were neurological. My stomach would distend to the degree of when I was 5 months pregnant. My right leg would get so weak that I could barely lift it with each step (however, I did push through it and was without cane or wheelchair). These symptoms have come and gone since then. A friend who is an EMT mentioned it could be in my head, as the brain is a powerful thing. I was in and out of the ER MANY MANY times (Johns Hopkins, Fairfax, Prince William, etc), and every time to my dismay, they would find nothing or just a UTI. Every doctor with every right, pointed me to a neurologist. It was about this time that the Lord directed me to Dr. Abidin, and he sent me to different doctors to rule out as much as he could (finally a Doctor that didn't pass me off to someone else). I saw a neurologist in Alexandria, VA, and I was happy to receive a phone call that said I may have Multiple Sclerosis. Would you believe that I was actually relieved? But when I went to this neurologist with my husband, eager for a treatment plan, he tells me that the radiologist misread the MRI and that I have PTSD. "Post Traumatic Stress Disorder due to what?", I ask. He says from all the sickness Reese went through and taking care of her. Here we go again, "It's all in your head Sarah." At this point, I started to believe that it was all in my head. But when one of my very real symptoms would reemerge, it was hard to believe that diagnosis.
Shortly after, I was finally found to have an extremely diseased gallbladder that the surgeon discovered attached to my stomach when he removed it. It was supposed to be out patient, so they routinely were pushing me out the door right after surgery. I physically could not move a single part of my body. I told the nurse, "I don't think you should send me home. Something isn't right." He brushed me off and practically pushed me in the car. Matt had to support my body as we made it to the couch where I would lay for a full day asking for more pain medications. My doctor said I shouldn't be in that much pain, and told Matt to take me back to the hospital. They had to call an ambulance, because my dad and Matt could not move me. Long story short, I ended up admitted to the hospital for 4 days until I could walk and go to the bathroom on my own. Guess what they told me gain, "Sarah if you don't try, you are never going to get better." This came from not only nurses, doctors, but loved ones as well. Again, I hear, "Sarah why are you making yourself sick? Are you looking for attention?" Sigh...
(Later my Lyme doctor told me that I had my first die off of bacteria (herxheimer reaction) when they gave me IV antibiotics during surgery. That's what caused me to be so ill after surgery).
After this, my amazing Dr. Abidin diagnosed me with multiple food allergies. This was so severe that I had to cut out almost everything I had been used to eating. Wheat, corn, rice and milk are in every recipe and in every restaurants food. For an entire year I was wheat, corn, rice and milk free. I'll never forget driving to lunch after church with Matt trying to decide over restaurants due to my food restrictions. Matt isn't one to cause others to go out of their way, so in his anger with my concerns over food he angrily called me anorexic. He told me I'm faking all of these allergies so I wouldn't have to eat in front of others. When I sat down with our friends, Kenneth made a joke about something on the menu and my allergies, expecting a laugh, but I burst into tears and headed to the bathroom to pull myself together. Kenneth felt terrible, thinking it was him! Hahaha!
Again, It's all in your head.
- Those close to a person suffering from Lyme Borreliosis Complex:
- I'm not sharing all of this to put Matt down, but rather to show the reality of disbelief from family and friends and others regarding this terrible disease. I am saying, you're not the only one to accuse him/her of it being in their head. And I certainly don't fault anyone for saying or thinking it.
- Lyme Sufferer:
- The ones that actually say it out loud are going to be the ones who love you the most. Because they are the ones who are most honest. I'm sure most people around you "think" it, but don't say it.
It was exactly one year after being diagnosed with food allergies, my church gathered around me and prayed over me. I was instantly healed of food allergies! You can read the full story here. Why didn't God heal the rest? Read the full story here.
It was sometime around this time that Dr. Abidin went back through all of my 4-5 inch thick stack of medical records that I carried with me from doctor to doctor. My food allergies were healed, but I continued to have many other symptoms, many that were neurological and many that were from immune and hormone deficiency (I didn't know these things yet.) He flipped quickly through my one year old Lyme lab results and discovered that in fact I did have Lyme from positive Western Blot (the nurse told me it was negative at my family practice.) My heart was filled with relief as this was an easily treatable disease? Right? No. Wrong. It is a very controversial disease come to find out shortly after. Dr. Abidin correctly referred me to a Lyme Literate Doctor. I've learned to listen to him from now on. I discovered the high price of Lyme doctors and believed the main stream medical system lead by the CDC that chronic lyme doesn't exist. I went on a journey of treating the lyme with regular doctors and was even given 70 days of IV antibiotics by my internist. Nothing worked. My internist was going to continue treating me, but the next visit he oddly pushed me off to an infectious disease doctor. Clearly, either insurance or another doctor warned him of the controversy and he feared losing his medical license as others already have from "over-treating" lyme patients according to their guidelines.
It was about this time that Matt and I would again fight about what was happening to me. He pulled up "hypochondriac" and put it in front of me to read and said, "Doesn't that sound just like you?" He and I look back and laugh about it now. But at the time it was extremely hurtful.
- (Lyme mimics 300 diseases. Name a symptom, I've had it. And it moves around all the time. This is what makes Lyme patients look crazy like we are making it up. It's unbelievable even when I think about it or think about symptoms that I've gone through. I've wondered many times, "What the heck is wrong with me? Am I crazy?"
At this point I began to question whether it was even Lyme Disease.
I started seeking out specialists of every organ and body part that I was having symptoms. Well as you just read, Lyme mimics 300 diseases, so I saw a specialist in every single area out there. Seeing doctors is like a part time job, and we spent so much money in copays and ER visits, tests, CTs, MRIs, labs, etc, that we met my out of pocket maximum just 6 months into the year! Still nothing. I discovered I have 12 lesions and a pineal cyst on my brain, a complex cyst in my right kidney, and mild sleep apnea (stop breathing 7 times per hour). I was diagnosed with restless leg syndrome, as my body moves involuntarily 225 times in the night (it's really my tremors.) I have high blood pressure, tachycardia, and syncope (fainting). I was diagnosed with S.A.D (specific antibody deficiency.) I was diagnosed with hypothyroidism. My hormones were discovered to be so depleted that she told me I'm 35 years old going through menopause as if I'm 55. I have neuropathy, dysautonomia, and a decrease of feeling in my left arm. I have degeneration in my spine, L5 S1 is bulging, and I have arthritis in my spine (diagnosed by my spine doctor from an MRI). After an 8 hour mental psych exam, they discovered that my short term memory is nonexistent unless I have a cue, and that I am severely cognitively impaired. I am diagnosed with anxiety, TMJ, fibromyalgia, hypersomnia, environmental and food allergies (healed), arthritis, asthma, chronic sinusitis, chronic migraines, and PTSD. Sigh... That's all I can think of now.
Now what? 30 pills a day later. And I continue to decline.
Amongst all of those doctors I did finally see a lyme doctor in Roanoke. She put me on an extreme oral antibiotic regimen. I responded to the antibiotics with the extreme herxing that she warned me about. The way I reacted with the antibiotics confirmed to me that there absolutely is a major chronic infection that I am suffering from. You may have seen the video where I could not walk properly. Not only did she diagnose me with chronic lyme, but Babesia and Bartonella as well. And one of those can only be treated with an anti-malaria medication.
- The Herxheimer reaction appears to provide a highly reliable barometer of therapy in Bb (borrelia burgdorferi | causative agent for lyme), so much so that a treatment course which lacks the Herxheimer response places the diagnosis of persistent Bb in serious doubt. Dr. Jemsek. Herxheimer reaction was discovered by two brothers, Jarisch Adolf Herxheimer and Karl Herxheimer.
But I didn't get better, so I tried to go with natural treatment with Doterra oils. They help symptoms, but I did not see overall relief.
Then I passed out, and I woke to Reese calling my name.
Then I had many trips to the ER because of my heart mimicking a heart attack. So I went back on IV Rocephin. After seeing a heart doctor that I waited two full months to get into, he urged me to go to Dr. Jemsek as he deals with the sickest neurological lyme patients.
I was quickly able to get into his office ($800 for my 3 hour appointment, worth every penny). She adjusted my medications and added anti-seizure meds and more neuroleptic medication. I will start on my intense IV treatment on February 25. Matt and I both are very confident in the Jemsek Clinic and believe that he will be worth all the money.
Dr. Jemsek lost his medical license for a year in 2006 and closed his practice in North Carolina. "Blue Cross Blue Shield of North Carolina seized the opportunity to follow up on the medical board’s judgment with a $20 million lawsuit, for Dr. Jemsek’s alleged “unnecessary” antibiotic treatments." Read the full article by Under Our Skin. He had to declare bankruptcy and did not reemerge for 2 years. He ultimately reopened his practice in Washington, DC (right up the street from me.) I was warned about the controversy surrounding Dr. Jemsek a year ago when I was receiving daily IV treatments at the hospital. But since I have been under their care, I have been amazed at how they work with lyme patients. They understand that we have severe brain damage, so they write everything out as if we are a child, and they prepare you for your appointments so you will get the most out of them (with forms to remind you of things to ask, and listing medications, labs, or tests). They also require you to always bring someone with you to retain the information. Matt also has to sign a care agreement.
Now I await my treatment as I prepare my body with nutrients, meds, supplements, and activity (little).
But... then I was approached, not once, not twice, but three times by my closest of closest family.
"I think you may be focusing on the lyme, so that's why you aren't getting better. If you were more positive and focused on the good, then maybe you would not be sick. Don't you think the lyme is gone now after all the treatment you've been through? Do you think that maybe you never dealt with your past? Sarah, you tend to get over things really quickly, do you think maybe your symptoms are a mental illness? You've been through a lot since you were 16. What if you see a psychiatrist instead? I'm worried about the controversy surrounding this doctor. Are you sure it's Lyme? Maybe it's something else. I'm really worried about you guys spending so much money on this doctor who treats with more antibiotics."
Being a follower of Jesus Christ, as He has washed all of my sins past, present, and future, I do not believe that I have physical manifestations of unresolved past issues. My sins, sins I've committed, sins that were done to me, all is resolved, forgiven, and washed in the blood of Christ. Can I get an amen!?
- 2 Cor 5:17: This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!
However, I'm not calling my family out specifically, as I genuinely appreciate your concerns. I have thought through each of these, but I have considered each one of these over the course of the last couple of years. Matt and I have considered every avenue. I'd even given up just before I decided to go to Dr. Jemsek. But when I left Dr. Jemsek's office, there was a young (40s-50s) woman in a wheelchair, being pushed by her husband. She was full blown ALS, as her head hung to the side with her mouth open and arms limp. It made me so sad for her. She gave me the drive to fight.
As I had just discovered from my PA, Kelly at the Jemsek clinic, that virtually ALL of my chronic symptoms are derived from my brain, spinal cord, and peripheral nervous system, I decided to fight for my life. She said the bacteria LOVES the CNS and I can almost guarantee that the disease is causing miscommunication not just in my brain, but also in the spinal cord, and in the nerves.
YOU WERE RIGHT! IT IS ALL IN MY HEAD.
But it's caused by a very deadly, slow killing array of bacteria, that needs to be eradicated.
I trust Dr. Jemsek to get me into remission, no matter the cost. I want my kids to have a healthy, active mom again. I want to run another race, play another volleyball game, run to the playground with the girls. I want to take them to their activities and watch them. Heck, I want to wear jeans again!!
I want my health back!
- "A doctor there told me that Dr. Jemsek was brilliant and may be proven correct in 20 years, but in the meantime, doctors can't risk losing their licenses by treating chronic Lyme disease." Under Our Skin article.
- Medicine is a continuously changing and expanding field, and it is said that almost half of everything that we learn in medical school will usually be proven to be wrong every 5 - 10 years" (Dr. Richard Horowitz, "Why Can't I Get Better?").
Disclosure: Matt is my soulmate, my perfect fit and I could not imagine life without him. I am giving you a glimpse of our brokenness as God has used to mold and shape our marriage to what it is today. Today, Matt is my biggest supporter. He and I have grown so much in the Lord that I would not change any of our trials, as they are what the Lord used to make us into willing vessels, and He continues to work in us. Matt's fears, frustrations, questions, throughout my illness are very real, and they are very normal. It's not for me to change him, but to give it all to the Lord and let the Lord mold his heart through these trials and tribulations. Like I said, Matt is my biggest supporter. I rely on him like never before, and he's there for me, 110%.