So, between November 2009 and June of 2012, I lived with bouts of recurring pericarditis still without knowing the cause. With everything I did, I worried that I would have another flare. A flare basically meant lots of chest pain, bed rest (because it seemed to decrease the amount of time a flare lasted), and another subsequent increase in my dose of steroids. I limited my physical activity during this time, which meant that I wasn’t spending much time outdoors. And time outside in nature is what soothes me and my soul the most. As you can imagine, I wasn’t feeling very good overall during this time. I noticed apparent patterns like my symptoms seemed to get worse around the time of my period, and I seemed to always have flares of chest pain on my birthday, Thanksgiving, and Christmas. To the point that a friend once suggested that maybe I go to bed before Thanksgiving and not wake up until after Christmas. I would tell my doctors, but they were unable to make a connection with any of it.
During my son’s naps, I would take time to research pericarditis. I found an online support forum for people with pericarditis where I was able to connect to others who were also dealing with this strange illness. I was anxious to find some answers, or at least other people who could relate to what I was going through. I even went on to be the “leader” of the pericarditis forum for a while, welcoming new people into the group and sharing my own story. I continue to keep in touch with a few of the women from that group. At one point, I sought the help of an acupuncturist who would do weekly treatments and send me home with herbal Chinese teas to drink.
During the Fall of 2011, I came across a doctor in my area who had successfully treated someone with pericarditis using IV hydrogen peroxide therapy. By that time, I was almost to the 2 year mark since my pericardial window, and had been seeing my cardiologist, a rheumatologist, and a had gotten a second opinion from a cardiologist at Stanford. I was still on daily prednisone, still suffering with the side effects of it, and desperately trying to get off of it because of the known long-term negative side effects. I was also injecting myself with Methotrexate daily in hopes that it would help me get off the prednisone. No one had any answers for me. I was desperate for answers and was willing to try anything to get my health back. I began my IV hydrogen peroxide treatments in September of 2011. I forget how many times a week I would go at the beginning, but I do know that there were some weeks in there once I was successfully off the prednisone that I went 3 times a week when I was sick and at risk of flaring. Mind you, the office where I went was a 45 minute drive away from my home, and I would generally be there for 2 hours for each treatment, which meant that the whole ordeal of driving and sitting there getting treatment took about 4 hours total. And I was fitting these sessions in around being a Mom and full-time nursing student. I once saw a movie where one of the characters was going for chemotherapy and would pull up a black, leather recliner in a room next to the other people there receiving their chemo. That’s exactly what it was like with the hydrogen peroxide treatments. A group of people all sitting around in recliners hooked up to IV drips. The idea behind why hydrogen peroxide can be beneficial is that it adds a large amount of oxygen to the blood stream, and things like bacteria, viruses, and fungi generally do poorly in high oxygen environments. So even though this doctor couldn’t be sure what was causing my pericarditis, the idea was to oxygenate my system so that the possible culprit would be killed off. Well, this worked great in that I was able to get off of the prednisone fairly quickly. Initially, I would chat with the other people there amazed to hear their success stories with a myriad of different IV treatments for various illnesses. IV hydrogen peroxide does wonders for people with circulation issues related to diabetes for example. I’d share my story and my seeming success with this new treatment. Later, I would sit and study for class, or sleep during my treatments. Over time, it became tiring to talk and share my story. I found myself becoming more and more exhausted all the time, and I would usually sleep through my treatments. I also noticed that my memory surrounding my exams in nursing school seemed to be declining. At some point, in a conversation with another patient about primary care doctors, I was told to go to a Nurse Practitioner here in town. My doctors attempted to explain away my severe fatigue (and think even more tired than new parents) by saying that it was because I had a young toddler and was in nursing school, but I knew that it was somehow related to my health. I even questioned if maybe I was experiencing adrenal fatigue, but it fell on deaf ears. At this time, feeling generally unheard by my other local providers, I sought out the help of the holistic chiropractor in Oregon who had helped me when I bruised the bones in my feet in a fall (see We Are Never Alone) citing extreme fatigue as my most problematic symptom. She listened to me and agreed that I could be experiencing adrenal fatigue and she had me do a saliva test to find out. Sure enough, the tests came back definitive for adrenal fatigue and she started me on a natural supplement right away. I noticed some improvement, but I generally noticed that I seemed to be feeling worse all the time. Between September 2011 and June of 2012, I had a total of 55 IV hydrogen peroxide treatments, multiple infrared sauna treatments, and IV vitamin C and IV DMSO treatments.
When I finally made an appointment (June 2012) with the Nurse Practitioner I had received a rave review about, I really felt like I was just going so that she could meet me and hear my health story, with the hope that she could be a sort of overseer for me of all things medical. I had a lot of specialists involved on my case, but did not yet have a primary care provider that I could trust to keep track of everything as it was happening. During my first appointment in June 2012, upon telling her my experience with pericarditis and the ensuing loss of my health, she began asking me questions. I should say that there had been a time for me while living in Oregon where I got lucky to have health insurance through a job after at least 5 years without it. I had a kind of running list of all of the questions I wanted to ask a doctor during that time about small things related to my health that I had noticed. My ex-husband once reminded me that I would sometimes see natural remedies for things at the food co-op in Oregon and wonder if they would help me. He just thought that I was a hypochondriac. My point is that some minute symptoms may have appeared prior to November 2009. But back to my appointment…after maybe 5 to 10 minutes of asking me questions and examining me, the Nurse Practitioner told me that I should be tested for Lyme Disease. I explained to her that I had been tested for Lyme Disease during my second hospitalization in February of 2010, and had been told that the test was negative. She explained to me that the tests for Lyme weren’t very sensitive and that because of that, diagnosing Lyme was supposed to be based more on clinical findings than the tests. SEE LYME DISEASE SYMPTOM CHECKLIST HERE She also explained that because ticks carry more than just Lyme Disease that it was very possible that I was also experiencing symptoms related to other co-infections I likely had. She gave me a test kit for the Igenex Lab Inc. (IGENEX WEBSITE) here in California that has developed one of the most sensitive tests for Lyme disease in the world, and suggested that I make an appointment with a Lyme Specialist in the Bay area. I left that appointment completely stunned. Could she have figured it all out so quickly? Could my almost 3 years of health problems be explained by Lyme Disease and other tick-borne illnesses? Did this Nurse Practitioner just solve the mystery that several specialists could not?
I went home and dug out my lab results from February 2011 that I had because I had a copy of my chart made when I went to Stanford for the second opinion. I found out that on my old Lyme test, I did have one band present, band 41. (Understanding Bands on a Western Blot Test) I began to fervently research Lyme Disease. I found the Lyme Disease symptom checklist and was amazed with the number of symptoms I could check off on the list! I began to get excited that I might actually have some answers! And I had a lot of hope that this meant that I would finally get proper treatment!
If you recall from other posts, for my first career, I had spent the better part of 10 years traveling the country as a wildlife and fisheries field biologist, so I definitely had plenty of exposure to ticks in the wild areas where I lived and worked. I have lived in 1. West Virginia 2. Florida 3. South Carolina 4. North Carolina 5. Maryland 6. Alaska 7. Utah 8. Oregon 9. New Mexico 10. California. I also worked and/or spent time in 1. Ohio 2. Pennsylvania 3. Georgia 4. Arizona 5. Washington. I never had a bull’s-eye rash often associated with Lyme Disease. And I only recall having one tick for sure while working in Washington. But the nymph form of ticks can be very very small, like the size of the period at the end of this sentence, so they are easily missed.
You may be wondering why I needed to see a Lyme Specialist rather than just being treated by my Nurse Practitioner. Well, there is a lot of controversy surrounding the diagnosis and treatment of Lyme Disease. There are two trains of thought about appropriate treatment for Lyme. One group includes the Center for Disease Control (CDC), Infectious Diseases Society of America (IDSA), insurance companies, and most doctors who believe that Lyme can be easily treated with a short course of antibiotics. They explain away persistent symptoms post-treatment by saying that the problem is then either psychosomatic (all in the person’s mind) or an autoimmune response. The other side includes the International Lyme and Associated Diseases Society (ILADS), Lyme literate doctors who have a specialization in Lyme Disease, and lymedisease.org that believe that Lyme Disease is resistant to treatment and that longer courses of antibiotic therapy is needed to successfully treat Lyme. They explain that there is a such thing as chronic Lyme Disease that persists after treatment, especially when Lyme goes undiagnosed and therefore untreated in individuals. Most doctors aren’t really trained to recognize Lyme, let alone treat it. Lyme has so many different disguises and an extremely wide-range of symptoms. In the United States, the health insurance companies have a lot of say on the kind of treatment doctors can provide to their patients with Lyme Disease. Doctors who have given their patients long-term antibiotics for Lyme have had their licenses threatened and in some cases taken away. So the Lyme literate doctors as a rule don’t accept insurance, and instead require patients to pay out-of-pocket for their services, because they have found the most success in treating people with long-term antibiotics, and insurance companies would limit them. If you want to learn more about this controversy, I HIGHLY recommend that you watch the documentary “Under Our Skin”. It used to be available on Hulu or Netflix, but I found it for rent on YouTube for $3.99 here: WATCH Under Our Skin
In a very round about way, I ended up having my first appointment with my first Lyme Disease Specialist in Los Angeles in July 2012 before flying to Colorado to visit family. Prior to my visit, I was asked to provide my medical records and was asked to fill out extensive paperwork detailing my symptoms, and was also required to write a one-page paper outlining my health concerns. As soon as the specialist entered the room, she told me that she definitely thought that I did indeed have Lyme Disease as well as at least Bartonella (Cat Scratch Fever), because of the involvement of my heart. She surprised me by saying that it would be better if I had AIDS, because it was easier to treat than what I likely had. At that time she began to mentally prepare me to get either a PICC line or Mediport for IV medication delivery in the future, because of my heart and brain involvement. She thought that the IV hydrogen peroxide treatments likely helped reduce some of my bacterial load, and said that I was likely beginning to feel worse, because when Lyme is killed off, it emits neurotoxins into the body which can start accumulating in the brain if you’re not taking any kind of supplement to bind to the toxins as they are released. She believed that this is why I felt so exhausted all of the time and why I was having issues with my memory. She filled out the paperwork for the Igenex Lab Inc. test kit and decided to test me for a whole host of infections at this time. Igenex does not accept insurance, so you have to pay out-of-pocket for their testing unless you have Medicare, or your health insurance covers out of network labs, which mine did not at the time. Luckily, I was able to apply for and receive assistance from the Lyme Test Access Program (Lyme-TAP) for my extensive testing.
At this first appointment, I received an IM injection of an antibiotic, a multitude of supplements, and the direction that I should completely eliminate gluten, sugar, and dairy from my diet. I was educated on the Jarisch-Herxheimer reaction, and was told various things that I could do to reduce the symptoms and detox my body during treatment. I was given a prescription for an antibiotic (Rifampin) to start once I was home from vacation. We continued onto Colorado to visit with family, with a suitcase full of pills, liquids, and powders. Finally, I had some answers, and I felt like I was making progress towards getting some semblance of my health back.
…to be continued…
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If you or someone you know has experienced Lyme Disease first-hand, and you have questions or comments to share, please do. I always try my best to help other people who are also on a journey with Lyme Disease. I have included a lot of very helpful Lyme-related links throughout this post. Please click on them if you want to learn more!