Mysterious Symptoms
It all started after spending a day at an Oregon lake. I woke up in the morning with a bullseye rash on my leg. I knew that this type of rash meant Lyme disease but I had heard we had no Lyme in Oregon so I chose to ignore it. I was a single mom at the time and was too busy to be sick so I pushed through this new fatigue I was experiencing. About four months later, while on vacation, I caught a severe cold and came down with what I believed was an ocular migraine. The next morning, the headache was gone but my eyesight in one eye seemed very strange. I was not totally blind but could see only a little bit through the flashing circular lights spinning in my vision.
A week later, my vision had not returned to normal. I decided it was time to go to urgent care. They gave me an injection and left me in a dark room for 30 minutes. When they came back there was still no change in my vision so I was sent to the ophthalmology department. The doctor looked into my eyes and said, “Sorry, this looks like multiple sclerosis.” I thought she was nuts. I did not know what MS was but I thought it was really bad and meant a wheelchair, and I just had a migraine. I left there in a hysterical state to pick up my six-year-old daughter from school. Luckily I only made it about a block when I realized I should not be driving. My eyes had been dilated and I could not see and was an emotional wreck. I called a friend to come get my daughter and then me. The next day I went in for an MRI and met my new neurologist. My MRI showed lesions on my eye nerve but nowhere else. They did some bloodwork and told me it was probable MS and to call them if I had any new symptoms. You need multiple lesions to be diagnosed with multiple sclerosis and I only had one.
Two months later my eyesight returned. I was ecstatic. But three days later I lost eyesight in my other eye. A new MRI showed lesions on both eye nerves, three on my spine and one on my brain. At this time I was told that two months earlier I had tested positive for Lyme disease.
Since at that time we “officially” did not have Lyme disease in Oregon they chose not to share those results with me or the second positive results that were found when they did a retest. They sent me for a spinal tap and said they would test my spinal fluid for Lyme and Oligoclonal bands. If it came back positive for Lyme then we would treat that and if it had Oligoclonal bands then it was 100% multiple sclerosis. I was also sent for another Lyme blood test. Results showed no Lyme in spinal fluid but I did have the Oligoclonal bands and my new blood Lyme test was positive again. The doctor assured me that the three positive CDC Lyme tests were wrong, not to worry, and just accept the MS diagnosis.
All in Your Head
I almost did just that! But luckily my friend’s mom heard my story and explained to me that the medical community does not understand Lyme disease and that there was a conspiracy going on. I almost did not believe her; how could a bacteria be a conspiracy? You either have it or you don’t. She came to my next neurologist appointment with me to show the doctor the proof that I had Lyme disease. The way he treated her was my first “aha moment” that indeed there was a Lyme conspiracy. Shortly after that appointment, the Oregon Health Department called me and asked where I had gotten Lyme disease. I explained that my doctor would not diagnose or treat me. They asked for his number and gave him a call. I was then given 28 days of doxycycline and told to never use the word “Lyme” in his office again. I did just that and never went back to his office.
I headed to the multiple sclerosis treatment center at Oregon Health Science University, the best place to treat MS in our state. There you meet with one doctor and then they present your case to all the neurologists. They agreed that the Lyme disease confusion needed to be cleared up but it did look like textbook MS.
My blood was sent to be tested at what they considered the best lab in the country. It came back CDC positive again. I was then sent to the supposedly top infectious disease doctor in Oregon and told that his was the final decision. We made the four-hour trip and found a hotel close to the hospital. In the morning I woke up to a phone call from the hospital saying they had a power outage and would not be seeing me. I asked to reschedule and they said that was not necessary, because the doctor looked at my file and declared that you do not have Lyme disease. I wondered how he could know this as he never examined me and I had four CDC positive Lyme tests. They had no answer. I did convince them to let me have a phone appointment.
It took a few weeks for him to call me, and by this time my symptoms had grown much worse. I was having anxiety attacks, depression, constant headaches, tingling, zapping, burning sensations and imbalance. Life was getting scary. You do not realize how important your nervous system is until it starts to fail. My conversation with this doctor was short. He was rude from the beginning and wanted nothing to do with me. I asked, How is it that I do not have Lyme when I have 4 CDC positive tests and all the symptoms? His response floored me: “You have what I call Lymedisease.com. Get off the internet, stop reading about it and it will go away!”. I said, “Excuse me, what I have is 4 positive tests!”.
Hope in Connecticut
I went to yet another neurologist, and was told, “Sorry ,the expert in Oregon said it was not Lyme so just accept you have MS.” These people did not know who they were messing with. I will never just accept that I have MS and not deal with the cause of my MS. I do believe I have MS but it was caused by Lyme disease and I believed treating that Lyme disease would cure my symptoms. I finally decided I was never going to be helped in Oregon; the conspiracy was too deep. It was time to go to Connecticut, “the Lyme capitol,” and get help. Connecticut is where Lyme disease was first discovered (in the town of Lyme) and the epicenter from which the disease spread. It is now found in many states. Denying that an entire State has a disease that other states has is ridiculous. I have never met a tick that respects borders, have you? Simply by looking at the veterinarian lab reports for Oregon you can clearly see that Lyme is here. If our dogs and cats are getting it, so are we.
I went to one last doctor before going to Connecticut in hopes he would run some labs for me. This one had treated my friend for Lyme disease years ago and I figured he would be more open to my case. I started to tell my story and he turned pale white and said, “Sorry, we do not have Lyme in Oregon.” I was shocked. It is like they read it off of a script! I was even more shocked months later when I was reading over his reports from that visit and saw that he diagnosed me with “strong denial syndrome” and “obsession regarding alternate diagnosis.” I had one infectious disease doctor tell me to be happy I had a diagnosis of MS because at least doctors believed I had an illness; many with Lyme are considered crazy. Excuse me but that is not comforting, it is insulting. This is my life we are talking about.
Off to Connecticut I went and met a wonderful neurologist and teacher at Harvard. He looked at my file and apologized that I had been treated so badly and acknowledged that I had indeed been a victim of a conspiracy. He suggested I find a lawyer when I got home to sue for malpractice, and even offered to fly out and testify. He diagnosed me with Lyme disease and multiple sclerosis. He sent me home with a prescription for 90 days of IV antibiotics.
The last neurologist I had seen in Oregon promised me that if I got a diagnosis from a knowledgeable doctor that he would work with him or her to treat me. I was so excited for my next appointment; I was finally going to be treated! I asked him what he thought and he explained that he would not be listening to that doctor because he had faxed him his report rather than calling and he felt disrespected. You have to be kidding me! You feel disrespected? How do you think I feel? It has been two years now since I got sick and still I have not been successfully treated for Lyme disease. He got a piece of my mind and I got chased into the parking lot while he screamed at me.
It took months to find a doctor to get me an IV prescription. I ended up paying thousands in travel expenses and my insurance did not cover that doctor’s appointment. I was tested for Lyme again by this doctor and again it was positive. The IV antibiotics kicked my butt. Whenever you kill a Lyme bacterium it lets expels a toxin, causing old symptoms to be intensified in what is called a Jarisch–Herxheimer reaction. Mine were so bad that I do not even remember that 90 days. My husband says I was in quite a state. I did continue to work this whole time and was only not fired because I owned the company and my brain fog was too bad to remember to fire myself. I truly should not have been running a company and we lost a lot of money during that time through bad choices I made.
But after those 90 days, I felt pretty good. I had an MRI and my 13 brain lesions were gone. It was a miracle! My new neurologist would not admit it was the antibiotics and said it was just a coincidence. At this point I could care less what doctors said to me; I was so jaded by the entire system. I was moving on with my life and had no plans to see them again. My boyfriend and I were married and I got pregnant right away. I was still worried about Lyme and after much research we decided to do oral antibiotics thoughout the pregnancy to ensure no Lyme bacteria transferred to the baby. My OB/GYN would not approve this, so I found a doctor to write the prescription. At this time the CDC website said you could not transfer Lyme to a fetus, but I knew better. A week before my baby was born the CDC changed their website to say expectant mothers should be treated during pregnancy because it does transfer to the fetus. My OB/GYN did pat me on the back and said I am glad you trusted your own instincts. My daughter was born healthy, and is now seven and still Lyme-free.
I was feeling great. I had a new baby and my Lyme was gone! About eight weeks postpartum I returned to work and on that day my legs went numb and my eyesight got blurry. I was scared and we decided to switch to formula. The baby was very colicky and I was so scared of her getting Lyme from my breastmilk. The next day her colic was gone; it was definitely the antibiotics in my breast milk hurting her poor tummy. My symptoms came on fast and worse than ever before. I went in for a new MRI and I had 17 new lesions on my brain and spine. I asked for IV antibiotics and surprisingly the answer was, “No we do not have Lyme in Oregon.” So back on a plane I went.
The Way to Lasting Health
This time I was given a three-year oral antibiotic protocol. It involved lots of different antibiotics and rotating them. I was now walking with a cane and my fatigue was debilitating. I continued to push through and take my antibiotics. I was on sleeping, pain, depression and anxiety meds and was still in pain and unhappy. Time passed and I was not getting better. After the three years of antibiotics my gut was thrashed. I would wake up every morning and vomit for over an hour. I had basically given up and accepted that I was never going to get better. Time to buy a wheelchair and prepare to be blind.
Then I found my healer. She is an iridologist. They study the iris of the eye and can tell you past, present and future health issues. I know it sounds kooky, but I have watched her assess many of my friends and family and she is accurate every time. She said my eyes showed the worst digestion she had ever seen. She said, “We will fix that and you will be fine.” She wanted me on a vegetarian diet and to give up my favorite drink of all time, Coca-Cola. It was tough as I was a soda addict. After a few months, she said, “Now it is time for the big cleanse.” She explained that I would be doing The Master Cleanse: for 10 days you drink and eat nothing but lemon, maple syrup, cayenne pepper and water. I also had to do colimas with anti-parasitic herbs every day. A colima is like a colonic but uses gravity rather than a motor to put water in your behind. In addition, I had to give up all my toxic prescription meds. I had been taking sleep, pain, depression and anxiety meds religiously for eight years and I was addicted. I almost ran the other way, but my husband asked me very seriously to do this. We decided I could try cannabis oil instead of all my other meds for pain.
I felt like a new person after that 10 days. I had hope now. I knew I would get better! The only problem is I always felt starving on the vegetarian diet and was just not happy about food. Then one day I saw a video on Facebook: it was Dr. Terry Wahls’ Ted Talk on getting out of a wheelchair and recovering from PPMS (the most aggressive kind of MS that you can supposedly never recover from). She did it using food! Her diet is a Paleo-based diet that recommends eating nine cups of brightly colored vegetables a day and includes pasture-raised animal meats. I was sold! I wanted a steak. Dr. Wahls’ new book The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles was not out yet so I ordered Practical Paleo by Diane Sanfilippo. The book arrived just as we were leaving for a family vacation to Texas. I threw it in my carry-on with no plans to change my diet that week. But it was so good that I went full Paleo that day. I have never willingly eaten a piece of gluten since reading Diane’s convincing words about the dangers of gluten for people like me. It was not tough to follow her diet in Texas; I found good grass-fed beef everywhere we went!
Within a few months of following the Wahls Protocol, I was back and better than before. I now have a hard time holding in my enthusiasm when it comes to talking about food as medicine. Food is powerful and worked better for me than eight years of antibiotics and failed MS injections. It has been almost three years that I have been in remission and I have lost 100 pounds eating great-tasting food and never starving myself. I do not count calories or restrict fat, but I do restrict dairy, grains and sugar. I love the new me!
My brain works differently now than it used too. I look back at my entire life and wonder if gluten had always caused issues for me. My gluten issues are not digestion-related they are brain-related. I did have one accidental bite of gluten in a restaurant since starting the diet. I immediately lost my eyesight and balance as I was trying to walk out of the restaurant. On the drive back to the hotel that night I had a major panic attack driving over a bridge. I do not like bridges, but it had never resulted in a panic attack before. And three days later I lost the feeling in my legs and that lasted nine months. I was so upset. I felt like I had failed the diet. And then I realized it just means the diet really works if you follow it. Gluten is evil in my body and I have no plans to ever let it in again.
I am slightly bitter about my whole ordeal. No one should be treated this way and the sad thing is my story is not uncommon or the worst. There are thousands of horror stories in the Lyme community. We really need help raising Lyme awareness. But I am also grateful for who I have become through this journey. I love the new me and I can honestly say before I got sick I did not love myself or appreciate life. The new me is inspired, passionate and just happy to be here.
I am also working to get the laws changed in our state. Last year I testified in favor of SB916 to the Oregon Senate (skip to 56:17 for my testimony) which would have allowed doctors in Oregon more freedom and flexibility in their Lyme disease treatment protocols, instead of having their hands tied by the CDC, which controls how most states define and treat Lyme disease. Currently the CDC uses the Infectious Disease Society of Americas (IDSA) guidelines. The National Guidelines Clearinghouse–a federal database that provides treatment information to health care professionals and insurance companies–has removed the IDSA Lyme disease treatment guidelines from its website because it is outdated. In my opinion, these guidelines are dangerous, causing too many people to be undiagnosed and undertreated, leading to what is termed Chronic Lyme Disease. In 2006, the then Connecticut Attorney General Richard Blumenthal filed an antitrust investigation against the IDSA. The IDSA settled the antitrust investigation by agreeing to review its guidelines in a public hearing. Shockingly, the panel for the hearing was exclusively IDSA members and of course they endorsed their own society’s guidelines. If you do some research into some of the IDSA members you will find many conflicts of interest, including decades-long financial relationships with Lyme disease vaccine manufacturers. Unfortunately the bill in Oregon was killed, and patients continue to fight for their right to be treated in states across the nation. For more information on the “conspiracy” surrounding Lyme disease, watch the Academy Award-nominated documentary Under Our Skin and the sequel Under Our Skin 2: Emergence.
Under Our Skin 2: Emergence – Trailer from Open Eye Pictures on Vimeo.
The best thing I got from this was becoming a Nutritional Therapy Practitioner. I am absolutely inspired by how food healed me when years and years of antibiotics and the very best MS drugs could not. Food is powerful medicine and I plan on sharing that with the world. I went to school at the Nutritional Therapy Association. The NTA is all about real food for real people. I searched many schools and the one thing that really set the NTA above the others for me was the Functional Evaluation. As an NTP we are taught this skillset to perform on our clients. It is a hands-on evaluation that gives us information on how the body is functioning. Once we have base numbers on the different body systems we use Lingual Neural Testing (LNT) to test different supplements to find the best one for each individual client. That is one of my favorite things about the NTA, we focus in bio-individuality. No one person is the same and no one diet or supplement is right for every person.
My future is bright and my dreams are big. Not only do I want to help people find what foods are right for them, I want to grow their foods and raise animals. Please follow me at Real Food Inspired Me to watch the journey unfold!
Beth Schultz, NTP
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