Monday, December 13, 2010
My illness came to a head in March of 2006. Before that, there were milder symptoms that I attributed to different causes which were all unrelated. My husband and I were married the previous Fall and we had just finished building a log cabin on a densely wooded 3 acres. It was a wonderful time for both of us. Being so much in love magnified the beauty around us. I would often venture into the dense woods and sit on a moss covered fallen tree as I opened my senses to the surrounding natural world. There was so much life everywhere I looked. Often deer would run right past me as I sat there silently observing. I also spent a lot of time with my German shepherds and kittens, tending to my vegetable garden and walking to the nearby Yellow and Kankakee rivers to watch the otters and to search for Native American arrowheads, an intriguing echo of the past. I dreamt about having a baby and raising my child in such a prolific environment and teaching our child to savor the preciousness of nature. I had no idea that within the heart of the place I had woven my dreams around, was a hidden danger that would soon leave my body and my life in its perpetual wake.
In the beginning of March that year, a circular cluster of hives appeared just above my right hip. I made an appointment with Dr. D, my local family doctor thinking it was a simple allergic reaction. He said that since I spent a lot of time in the woods that it was probably poison ivy, oak or sumac. I went home and put cortisone ointment on it like he said but a week later the rash persisted with no visible improvement, so I went back to the doctor and this time he prescribed prednisone. I know now that prednisone is one of the worst medications someone infected with Lyme Disease can take but I don't blame Dr. D. At that point there were no other signs of Lyme disease other than a subtle fatigue, but it didn't even occur to me to mention that. Looking back I suspect the rash was from a nymph tick bite since they feed and move on rather than becoming engorged. I didn't even notice its presence as they are often smaller than the tip of a ballpoint pen. I have heard of people having an allergic reaction to a tick bite.
I also recall several tiny bumps on my scalp, but even though I had my husband look closely, through my dark brown hair and their inconspicuous size, if there were nymphs, they were likely camouflaged. He thought they were blackheads from oily skin. They were black heads alright, attached to deer ticks feeding on my blood, hidden from sight. I also recall brushing tiny bugs off my arms, probably twenty at once, which happened all the time. I thought they were sand fleas. When I saw pictures of deer tick nymphs after I found out I had Lyme, a chill went down my spine. It was the nymphs that I was brushing off my arms. There were also adult ticks in our bed. I thought they were tiny spiders trying to stay warm as it was still frigid outside. The logs that were used on our cabin were stored outdoors, some directly in the brush and the others right up against the edge of the brush and trees. The entire outside frame, two stories, consisted of these logs and we actually stayed a few nights before the cabin was completely sealed off.
After going to the doctor the second time the earliest indications of Lyme disease began to emerge. When the subtle fatigue that I had accepted as normal began to strengthen and my usual vibrant life force began to weaken accordingly. I didn't realize that the rash and fatigue were related at first. I assumed that the worsening fatigue was either from the stress of moving 1200 miles and building a home or that it was a side effect of the prednisone. I thought that after a few days of resting I would be restored to normal function but no matter how much I slept, it wasn't enough. I never woke up feeling refreshed, even after eighteen hours of sleep in one day. What little energy I still had at that point vanished quickly after minimal exertion. No matter what I did I felt completely drained and I would have to go back to sleep. If I tried to force myself to stay awake I felt like I was going to lose consciousness regardless.
I couldn't keep up with my responsibilities anymore. I had to ask for extensions on my college courses, I couldn't take care of my animals, my garden, or keep up with household chores. I used to do all of that with energy to spare. My husband actually had to force me to get up to eat. It got the point where not only did my husband have to wake me up to eat throughout the day but I had to eat in bed. I was clearly not getting better from resting as much as possible so I made another appointment with my family doctor. When Dr. D saw me this time he noticed that I was very pale and when I explained to him what was happening he told me that it was probably anemia. He didn't see the connection between my symptoms either. He had the nurse draw blood to check for anemia and he told me to start taking iron pills in the mean time. A week later I received a call from the doctor's office. My iron levels were within range, not even borderline. I was told to stop taking the iron and to come back in for more tests. A couple of days prior to my appointment, I had a new symptom. In each of my underarms was a hard lump. It was at that point that I started to worry so when Dr. D said that my lymph nodes were swollen and that I probably had mononucleosis, I was relieved that it wasn't anything more serious. I had more blood drawn to test for mono and I went home thinking that I was worried for nothing and that it wouldn't be a big deal that it would just run its course and things would return to normal.
One night, a few days before the test results were in, my legs started to ache like I was getting the flu. At first I thought that my immune system was weakened by the mono and I was now getting the flu from being exposed at the doctor's office. This theory was further supported when I started to experience nausea. But I soon realized that the nausea I was feeling wasn't quite like what I normally get with the flu. I didn't have any of the other typical GI symptoms and I didn't have a fever. Then things got even worse. The pain in my legs intensified and began to spread like wild fire. I felt like I was being stabbed with a knife in every one of my joints and muscles along with an intense deep aching throughout my bones, especially in my legs. It came on so fast that it took a few seconds to process what I was feeling. It was strangely overwhelming. The only part of my body that wasn't overwhelmed with pain sensations was my face. One moment my husband was sitting next to me in bed rubbing my aching legs and the next moment I began to cry out in agony. I was in so much pain I could barely tell him what was happening. My husband says that at this time I actually lost consciousness because my body was protecting me from the pain. I wasn't in a coma, and my vitals were stable, so my husband decided to keep me in the comfort of my own bed rather than go to the ER. He stayed awake all night, watching me and consoling me when I awoke from my pain free slumber and began to cry myself back to sleep.
In the early morning hours I developed a low grade fever and terrible chills. I felt chilled to the bone even though I had three heavy blankets wrapped around me and it was cozy in the house. The next morning my husband called Dr. D but he was on vacation and would not be back for three days. Greatly concerned about what was happening to me he made an appointment with Dr. L who had been his family's doctor for years and he could see me the same day. It was a 3 hour trip but he wanted to make sure I was seen by someone he knew he could trust. He was starting to realize that whatever was going on was more complicated than we anticipated. I slept through the trip but when I arrived I was surprised by how weak and uncomfortable I was. At that point I still thought that at any time the odd symptoms would disappear and my life would return to normal. When Dr. L looked at me I could tell that he was concerned by my appearance. After a thorough examination he told me that I appeared to have a very serious infection. He said that he needed to run more blood work to look for the possible culprits and in a week we would hopefully have answers. He wrote a prescription for the pain and sent us over to the local hospital to have blood drawn. As we drove from Dr. L's office to the hospital, I became curious and read the lab order. He was running a CBC panel and tests for lupus, rheumatic fever, and another mono test.
My worry was increasing as each new "clue" emerged. I knew deep down that something was wrong but when the doctor seemed concerned, that was when it became real. I didn't know what to expect. I didn't even know how worried to be. Three days later Dr. D's office called and said that my mono test was negative which I expected with the development of the new symptoms. A week after my blood work we went to Dr. L for a follow up. Everything came back either negative or within normal range with the exception of my white blood count which was still within normal range but borderline high. I was glad that nothing came back positive but at the same time the unknown was eerie. I couldn't understand why there were no definitive answers. I was getting worse and an explanation of what was happening to me still eluded us. Dr. L told us that I needed to see a specialist and referred me to a rheumatologist. I decided I was going to make an appointment with Dr. D instead and then go from there.
When Dr. D saw me again he had the same concerned expression on his face as Dr. L. When I filled him in on all that had happened while he was out of town he listened carefully but didn't say much at all. I could tell he had something on his mind but he wasn't keen on sharing it with me. He placed leaned his weight on his hands against his desk facing away from me and sighed deeply, then asked if I remembered a tick bite. When I said no, he explained to me how tiny the nymphs are and held up a ball point pen. He said he wanted to run more tests and he wrote me a prescription for a month of Doxycycline and Quinine. He said not to wait for the results, to start the medications right away so I did. The tests he ordered were for Rocky Mountain spotted fever, Lyme disease, parvovirus and another tick borne infection but I cannot recall which one as the obscure names were not yet in my vocabulary.
On the antibiotics I feel an uncomfortable “toxic” feeling. That's the best way I could describe it. My symptoms were generally unchanged aside from feeling worse until the second week. I did feel slightly better as far as the symptoms were but the toxic feeling never went away and my stomach was always unsettled up until the day the antibiotics ran out. A few days later my symptoms returned with a vengeance. When I went back to Dr. D, I was told that all of my tests were negative. I was really confused as to why I seemed to get better briefly and then got worse again. He seemed frustrated as well. He then referred me to a rheumatologist just as Dr. L had so I made the appointment and figured that must be the right direction since both doctors said the same thing. I could tell that my husband was deeply concerned which was unnerving because my husband is always the one who is calm and confident in distressing situations. He would stay by my bedside for hours caring for me and when he wasn't with me, he was trying to gather information that could find answers to shed light on my medical mystery. It was so awful because he couldn't even hold my hand or massage my muscles as any physical contact was too painful. I kept looking into his eyes and in his eyes I saw that he was never going to give up until I was well again. Sometimes he would whisper, "in sickness and in health."
The appointment with the rheumatologist was a disaster. Since we had just moved to Indiana from Florida, we didn't realize that the doctor's office just 3 hours south of us was just on the border of the time zone so they were an hour ahead of us. When we got there they told us we were late so we apologized and explained what had happened but they were extremely rude. I understood they had to run an office and couldn't accommodate late arrivals so I asked for another appointment asap. They said I had to wait another month to see the doctor when I only had to wait a few days for my original appointment. We had just driven three hours and the entire time I was crying from the pain so my husband was really upset and insisted that we would wait until he could see us that day. He was very polite and explained how I was deteriorating so fast and that in a month I could be in much worse condition so they reluctantly agreed to let us wait in case there was an opening. I think they just wanted to get rid of us so they called us in after an hour of waiting. I don't know why but I expected the doctor would at least be professional, nevermind empathetic.
Instead, he was just as rude as his receptionists were. In the middle of explaining my symptoms he interrupted me and said, “I don’t think that you have anything physically wrong with you. You are obviously depressed and need to be medicated. Here is the number for a mental health facility, I think you should call and make an appointment." He hadn't even examined me, didn't check my joints for swelling, or my range of motion. He seemed to have his mind made up already, although I'm not sure when or why that was the case. I told him about my symptoms and that was his response. I tried to explain to him that I wasn't depressed but he refused to listen and kept cutting me off in the middle of talking. It was ironic because he had no idea that my husband has a MA in Psychology and worked as a clinical psychologist for many years. My husband and I never mentioned that since he clearly had made up his mind already. There was so much I wanted to say but I bit my tongue and calmly stood up and walked out holding my husband's hand. When I got in our truck I began to cry. I couldn't believe that he thought my complaints were psychosomatic. It was demeaning and frustrating but after shedding a few tears my husband and I brainstormed about our next move. I called Dr. D and when I told him what happened and he said I wasn't the first to complain about this particular rheumatologist. He apologized and referred me to another rheumatologist who had a reputation for being more compassionate.
When we went to the appointment I was still a little on edge from what had happened with the previous rheumatologist. I was really surprised when Dr. R listened to everything I said and even read notes I had written in my journal about my symptoms. He did a thorough exam and explained in detail which tests he would run and why they were necessary. When he checked my knee reflex he was almost kicked and jumped backwards and he explained that was a sign of neurological involvement. He told me that even though I had been tested for Lyme disease that I could still have it and that sometimes Lyme is difficult to detect in the early stages. He ordered blood tests for every condition I could possible have (even Lyme disease again) and also an MRI for my brain and spine to rule out multiple sclerosis and other brain or spine disorders. He had no doubts at all that I was sick and said that he would do his best to find out what was ailing me. He also gave me Vicoden for the pain which surprisingly didn't do much but at least it took the edge off. I was in so much pain that even the smallest amount of relief was welcome. He also started me on another month of antibiotics, this time is was tetracycline. I actually started crying tears of relief at the end of the appointment and I thanked him for helping me when no other doctors would.
Several days before the next appointment I caught what I thought was a severe case of the flu. Looking back I wonder if it was actually the onset of one or multiple co-infections as some do present with severe flu like symptoms in the early stages. I had never been so sick in my life. I couldn't keep any medications down so I was in extreme pain, I was feverish and drenched in sweat, and there was nothing we could do to stop me from vomiting. My husband took me to the ER and had to bring me in a wheel chair because I didn't have the strength to walk. I was literally vomiting every five minutes or less and when nothing was left to throw up, I started dry heaving over and over. Once we were seen my husband explained what was going on with my health so they called Dr. R and then set up an IV line for fluids and gave me meds for both the nausea and the pain. When the nurse inserted the IV catheter it hurt worse than it should have. I said to the nurse that it didn't feel right and her response was "Oh honey, you're just overly sensitive because you're sick."
I didn't have the strength to protest and it wouldn't have helped anyway. After about six hours I was stabilized so they sent me home. I was able to sleep that night and while I still felt the symptoms of the mystery illness, I was just so thankful not to be throwing up continuously. The next morning my right arm (where the IV line had been) was very swollen, red, hot to the touch and painful. There was a red line down the length of my arm. It was so painful that I had to wear a loose jacket so the fabric wouldn't touch my arm. My husband immediately drove me back to the ER where they told me that I had an infection from the IV line and gave me antibiotics. They were different from the ones I had just finished taking but I can't recall exactly what they were, probably keflex or amoxicillan. Within a few days my arm had healed. Looking back I wonder if one of the tick borne infections attacked the IV line and surrounding tissue or if the nurse didn't put the line in correctly and injured my vein and then one or more of my infections when after the injury. Its all speculation.
As soon as I was over the "flu" it was time for my follow up with Dr. R. Over the course of the tetracycline treatment I seemed to get progressively worse leading up to the supposed flu. There are too many factors to guess what actually landed me in the emergency room. It could have been the onset of a co-infection, such as ehrlichia, or a herx reaction from the tetracycline, or it could have actually been the flu. Maybe at that point the co-infections had finally made their way into my entire system. During the follow up visit to Dr. R I was told again that all of the blood work came back negative or within normal range and the MRI showed no signs of MS or anything else. There a slight bulge in one of the disks of my cervical spine but it was a mild bulge and couldn't be the cause of my symptoms, not even the pain alone. Of course I didn't know then that the Lyme tests were inadequate. It was then that he brought up fibromyalgia and chronic fatigue syndrome. He said that he would rather it had been MS because he could have treated it. He said that with fibromyalgia and CFS they don't even know the cause so there are no cures. Instead there are only medications to control the symptoms. He talked about how the SNRI class of antidepressants sometimes help the symptoms of fibromyalgia and wrote me a prescription for Cymbalta.
At first I wasn't sure if that was what I wanted to do, but at that point we didn't have many options. By the next appointment a month later, my symptoms were no better than before I took the Cymbalta so Dr. R wanted to try a stronger drug of the same class. The drug was Effexor. On the Cymbalta I didn't notice a mood change at all, but as soon as I started the Effexor I became irritable, angry, depressed, moody and constantly anxious. Still, there was no change in my pain or fatigue. I decided to stay on it to give it a chance but when I saw Dr. R again we discussed other possible treatment options. He said that sometimes they use anticonvulsants. He brought up the use of cytostatic chemotherapy agents which I couldn't even believe he suggested that! Then he mentioned that it might be worth trying to visit Florida and that maybe the milder climate--which I was accustomed for most of my life--could reduce my suffering.
We decided that before we tried any more drugs, we were going to go to Florida and stay with a friend for awhile to see if there was a change. We noticed that I seemed to feel worse on colder days. We were desperate and open to any reasonable suggestions. I was bedridden and the relief from the pain medication was minimal. On top of everything else I was now a human guinea pig experimenting on myself with hit or miss treatments that were causing me to feel like a stranger to myself. We had no choice but to put our beautiful new cabin that we built up for sale because we could no longer afford the mortgage with all of my medical expenses and because I wasn't able to work. We also had to find new homes for our German shepherds which was absolutely devastating to me. Luckily a trusted family member agreed to take Heidi and Rommel in. We could not offer the quality of life they deserved on our depleted income. When we arrived in Florida I noticed almost right away that the pain wasn't as severe but the improvement wasn't what we had hoped for. The only difference was that I felt slightly more comfortable being out of the bitter cold. We decided to stay in Florida anyway because we feared that a winter in northwest Indiana would be too harsh, or even dangerous, in my condition.
We had no choice but to stay at our friend’s house because with the accumulation of medical expenses we couldn’t afford to live on our own until we saved for awhile. Even though the weather was less harsh I was still spiraling downward and new symptoms were emerging along the way. I would wake up in the middle of the night with an intense urge to sneeze and intense nausea that led to vomiting within seconds. I would vomit so violently that I actually broke a rib on the right side which took three months to heal. I couldn’t sleep on that side and every time I’d vomit, cough or take a deep breath it would get worse. I started getting painful spasms that would shoot down my legs and sometimes they would last for hours. The pain medication from Dr. R had gradually lost its effectiveness and was no longer bringing any relief. Everyday became a struggle and my husband had to help me more and more as I was too weak to do much of anything. Whenever I thought it couldn’t get any worse it would. Slowly, steadily I was deteriorating with new symptoms emerging and old symptoms changing and shifting in no obvious pattern. I was in survival mode. I wasn't capable of anything further than automatically enduring all that I was going through.
We kept in touch with Dr. R but after two months he obviously couldn't keep treating me without seeing me so we had to find another doctor to take on my case. Since I was told that I had a condition that could only be managed, not cured, Dr. R recommended going to a pain management specialist. It took awhile to find a combination of meds to manage not just my pain but also nausea and seizures but eventually my quality of life had somewhat improved. Sometimes my pain would drop to a 6 and I could actually walk around the house without suffering but unfortunately I was still too weak and exhausted to do much of anything. I started to accept what was happening to me. I felt such despair about not being able to fulfill my dreams and plans. Up until that point, I saw my illness as a temporary mystery that would be solved and everything would go back to normal.
The idea of managing symptoms for an indefinite amount of time frightened me. Did that mean forever? I was terrified that I may never be able to finish my education and start my planned career, that I wouldn't be able to have a baby, or the worst outcome, that I would live in such a poor state of health indefinitely. Sensing the turmoil I was enduring from such profound loss, my husband did something that I think had played a significant role in my healing. My best friend said it would be fine if he brought home a 10 week old toy poodle I named Tobi. He helped me take care of him but also let me take care of him as much as I could, and whenever I felt the despair from losing so much, I'd look at this pure, beautiful being and my sorrows melted away. I fell in love with my new fur baby instantaneously. Doing little things to take care of him gave me a sense of purpose and the happiness of having him in our lives made it very difficult to dwell on all of the loss. Eventually we were able to get our own place which was a much better scenario for healing. My best friend already had another roommate and people were coming and going. I was beyond grateful for her offer to let us stay as long as I needed but it wasn't a very accommodating environment because of how sick I was.
Once we were in our own place I felt much more secure. It was around that time that I lost about 15 lbs...bringing me to 115 lbs. My normal weight was 125 but I had weighed 130 before the weight loss. Also, I had been on the Effexor for three months and it was not helping me and I suspected it was the reason I was feeling unusually agitated and otherwise emotionally off balance. I decided to stop taking it and followed the protocol for tapering off such drugs. I was nearly done with the tapering process when I began to feel the first effects of SNRI discontinuation syndrome. Apparently Effexor is associated with the worst discontinuation reaction of all the SSRI/SNRI class of antidepressants. I was definitely not prepared for it and being as sick as I already was. It was pure hell. I had the worst anxiety I'd ever experienced, persistent insomnia, and a feeling like my skin was crawling. Then the nausea set in and I started vomiting cyclically again, just as I had in Indiana when I had flu-like symptoms. With the vomiting I could no longer keep my pain medication down and my pain got out of control and the vomiting got out of control as well.
As soon as the doctor saw me I was admitted and she wanted to keep me overnight for monitoring. I was on IV fluids the entire time. They immediately gave me nausea, anti-anxiety, and pain medication IV. The doctor said that I was having a severe withdrawal reaction to going off the Effexor and that I would be fine once I was stabilized. Each time they tried to stop the IV nausea medication, the nausea would return. When I left the hospital the next day, they had to give me Zofran, the same nausea medication used for nausea associated with chemotherapy. Once I returned home, things went back to the way they were before I stopped taking the Effexor, except for the lingering nausea. When I saw Dr. S again he prescribed a new nausea medication, Phenergen, which I have had to take around the clock since then. The pain meds continued to take the edge off the pain for awhile but I was still getting weaker I had this feeling that my life was slipping away. We had to buy a wheel chair because often I couldn't walk at all; not even from my bed to my bathroom which is only ten steps.
My husband helped me with so many basic things that I could no longer manage on my own. I couldn't even lift my arms to wash my hair, I couldn't make my food or get my medications for myself. I could no longer take care of Tobi but my husband did a great job. Whenever I was awake he put Tobi in my bed and he'd cuddle with me. As more symptoms unrelated to the constant pain started appearing, I knew that a benign pain disorder and chronic fatigue couldn't be the answer. I started having trouble sitting up on my own, lifting my arms to feed myself or drink from a glass, and even push the buttons on the remote control. I was so afraid that we had missed something and whatever it was had been causing chaos in my body without any defenses to stop it. It was so frustrating to know that something had to be done but not knowing where to begin. Our savings was being depleted so going to doctor after doctor seemed pointless. I felt so lost and vulnerable in a way that I had never experienced. I was lost in the labyrinth of chronic Lyme Disease and trying to navigate through the twists and turns, hoping, but not certain, that I would make my way out alive.
While watching Mystery Diagnosis one night, I was surprised when a young woman on the show was telling her story and it sounded exactly like what I was going through. When my husband joined me he was as surprised as I was how many things I had in common with this teenage girl. At the end of the show it was revealed that she had chronic Lyme disease. She had also been tested for Lyme disease several times before and each time the results were negative. Her doctor was on the show and he talked about how standard tests for Lyme disease are unreliable. He mentioned that there are only a few labs that have the proper equipment and testing standards that are necessary to find Lyme disease in blood samples. The young woman, like me, never had a bulls-eye rash and her doctor explained that not everyone with Lyme disease does, that is a fallacy that diagnosis depends on that as one of the criteria.
At that moment I began to wonder about Lyme Disease, something I had written off due to misinformation. I remembered the "spiders" in our bed sheets which looked curiously identical to the pictures showed of deer ticks on Mystery Diagnosis. I was outside most of every day. I found and removed ticks from our dogs or cats quite frequently despite topical treatments that are supposed to prevent ticks. I thought of the the bumps on my scalp. It was around the same time that the rash appeared. I also remembered a red discoloration, behind the hives, a curricular red discoloration that I thought was part of the hives. Also, fibromyalgia and chronic fatigue syndrome aren’t unusually progressive. Even Dr. R had mentioned that my pain was unusually severe for fibromyalgia and that fibromyalgia was a set of symptoms--not a disease with a known cause. I started searching the internet and the more I read the more it all seemed to fit together like pieces of a puzzle.
When I was finally diagnosed with Lyme Disease, a year after my earliest symptoms, I thought that I had seen the worst and that it wouldn’t be long and I would be on the road to recovery. I had no idea that finding out that I had Lyme disease was just the tip of the iceberg. I began to experience new, frightening symptoms. Over a period of two months I went from 120 lbs to 150 lbs. Then I started getting tightness in my chest, shortness of breath, and heart palpitations. Around this time my husband checked on me in the middle of the night to find my heart rate dangerously low at 32 bpm. He took me to the ER but by the time we arrived my heart rate was going back to normal but still unusually low. They kept me overnight again and ran so many tests but nothing really explained it. They accused me of abusing my pain meds but I knew it was just another piece of the Lyme puzzle and that I would have to rely on my inner most strength and my husband's tireless effort because mainstream docs were doing nothing but judging me. Here's an example of advise from an ER doc "someone your age doesn't suddenly become ill with their primary symptom being pain with no evidence of a cause. I suggest that you stop all pain meds, go to rehab if you have to, and get your life back on track".
I didn't have time to try to reason with such docs so I just kept trying to remain strong while my husband worked hard as my advocate. These new symptoms were absolutely terrifying to me. I was really scared that the infection was going to damage my organs or joints. An odd rash appeared on my knees and they became swollen, double their normal size. My knees started locking up at night and when I’d wake up in the morning and to unlock them felt like they were being torn apart. I began to notice aphasia and other cognitive dysfunction. Often I couldn’t quite say what I was thinking and I couldn’t remember words that used to come to me easily. Yet again, the pain medication was losing its effectiveness and my pain was out of control again. Instead of focusing on the symptoms, I knew I had to treat the source or my pain would be intractable. I knew I was getting to the point that the infection could start causing damage and I felt like I was in a race against time for my life.
I tried another round of oral antibiotics, but as with the other attempts, my body still couldn't tolerate antibiotics. I had pain and minor swelling in my kidneys and liver, even with supplements to support detox and organ function. When I stopped antibiotics the swelling went down. One doctor suggested that my infection was too advanced to start taking antibiotics at strong doses. I was advised to first prepare my body in a holistic approach and use antibiotics at a time when my body was in better condition to handle the massive kill of Lyme and co-infections. In the meantime, I didn’t want to leave my body defenseless so I figured it would be a good time to look into alternative treatments that I had been hearing about through the online Lyme community. The Cowden protocol was on the top of my list of potential alternative treatments. After three months I had a significant reduction in my pain (it averaged 6-8) and increased energy.
This trend lasted for about two weeks which is the longest break from the steady 10 and complete exhaustion. When my pain returned and the energy levels dropped the levels did not go all the way back to the way they were. I am still on the Cowden protocol and ever since the drop in pain I have averaged an 8-10 however these levels are not natural as I am on continuous pain medication. What may or may not be significant is that I was on the same pain medication and dosage long before the Cowden protocol and even if the pain medication reduces the pain now, it never did that before so the pain must be more susceptible to the meds or not as intense. It is tricky to determine exactly what is going on because if I miss my pain medication for whatever reason it is still a 10. This has been the only time that the pain dropped and then returned to anything less than a 10 so the Cowden protocol could have something to do with it. Because of that I have not lost all hope that it still may work.
Being able to sit up and walk around again, even if it was just around the house, felt like such a gift. I spent most of my new found energy on the internet finding as much info as I could on Lyme and co infections. I knew I was at a disadvantage knowing only the basics. I was searching for pictures of rashes associated with borrelia and co-infections. I had just learned of co-infections with Lyme and realized that they were more the rule than the exception. As I was looking at photos I was startled when I came across pictures of bartonella rashes. What I saw was a very important piece of the puzzle. What I thought were stretch marks from the weight gain was actually an extensive bartonella rash. It prompted me to look into the other co-infections and I started to realize I had several of them at least. I then started reading up on various co-infections and the specific presentations of each tick borne disease. My LLND estimated that I have, in addition to borrelia burgdorferi, bartonellosis, babesiosis, human monocytic ehrlichiosis, human anaplasmosis and mycoplasma fermantens. When I was told about this for the first time I couldn't imagine how it would even be possible to eradicate all of these infections! I was concerned enough about borreliosis alone.
My LLND told me that it could take years to treat infections as advanced as mine and that my treatment protocol would have to be switched around, added to and subtracted from, according to my symptoms and progress or lack thereof. The first year of treatment with the Cowden protocol was the most difficult. In some ways I was improving, in other ways I was worse. Much of the worsening was due to a herx reaction but the rest was just progression as Lyme wreaked havoc on what seemed like every system within my body. My pain was the worst it had ever been despite pain medications that would have otherwise (pre-Lyme) left me near comatose and drooling on myself. I never felt any of the narcotic effect whatsoever. Apparently if pain levels are severe enough, the narcotic effect is counteracted because it takes all of the drug to lessen the pain and when there is still pain leftover, there is no excess narcotic. I began to have pressure headaches, deep bone pain which was the worse in my thighs, and burning back pain. Two circular lesions appeared on each of my knees from a borrelia linked manifestation called ACA or acrodermatitis chronica atrophicans which is usually associated with European strains. With these lesions there was increased swelling. I also starting to have air hunger, a symptom of borrelia. Strangely though, I actually had little spurts of increased energy and less pain. Sometimes it was a mere 10 minutes and other times it would last an hour or two. It was nothing close to normal but it was another indication of improvement, however brief and intermittent.
The second year on the Cowden, I was finally starting to see sure signs of improvement unlike the first year which was full of uncertainty. I still had days when I couldn't walk more than a few steps but I was actually venturing out of the house occasionally for dinner or a movie with my husband. It wasn't until things had calmed down a little that I had the time and energy to reflect on all that had happened over the previous year...how I'd gone from being healthy and vibrant to barely able to sit up in bed. I felt anguish and disbelief but at the same time inspired and appreciative to be alive and on the road to recovery, however long and painful the journey would be. I was alive when I very could have died on numerous occasions. I felt I was finally past the point of no return, as long as I stayed on treatment. I was right about that. The second year still brought new challenges and complications and took so much strength to remain positive during the oh so gradual improvement. Anytime I started backsliding slightly or found myself on a plateau I'd panic...wondering if I was on the wrong protocol. But sure enough, if it was just switched it around a little or added to, per the advise of my LLND, then I'd get past the detour and I'd find myself right on track again.
After another year I finally accepted that this is journey was going to be a long and grueling one and that I might as well make the best of it. I grew tired of the same old feeling sorry for myself and stuck in the emotional rut of "I'll be happy when I'm well." Please, if anyone reading this is stuck in the same rut, I do not mean to patronize. I completely understand where you're coming from. I see that place as sort of a transition, a part of grief that when worked through will progress to the next stage. The next stage for me was to live in the present. Dwelling on the past and the future was doing nothing but causing a heightened sense of loss which resulted in depression. When I began to live in the present, I began smiling again, even through the physical pain and discomfort and so much loss. I began laughing and enjoying my time with my husband more. I stopped crying over my shattered dreams and started to behold my dreams as a beautiful place to go when my reality was overwhelmingly dismal. I still have my moments of feeling hopeless and grief-stricken but I have learned how to let those feelings come and go like ocean waves crashing on the shore and then receding.
By the third year I was still stuck in that elusive treatment phase of Lyme and co. I often asked, is it working? How well is it working? I knew for sure is that I am still much better than I was. It seems as if I had reached a plateau with massive herxes that seemed to be cyclic in nature. I improved so much so fast the first year on my herbal protocol that I became anxious when the rate of progress slowed down. My LLND explained to me that initial improvement is much faster because the herbal antimicrobials kill the more readily accessible spirochetes and the rest either go into a cyst form or they burrow into into deeper tissue evading the antimicrobials and my body's immune system. The bottom line, and the main reason that I didn't attempt a new treatment protocol entirely, was that up until I began the Cowden, I went from gravely ill, nearly comatose, and doctors literally telling my husband that I was dying, to walking around, having pain levels drop enough for the pain meds to take the edge off, and feeling less toxic.
UPDATE: I was on the Cowden protocol for nearly three years. I had initial improvement, then a plateau that lasted years with intermittent crashed where I would be extremely ill and bedridden again. Throughout my entire illness I was also having what I thought were costochondritis attacks, as that was what they were initially diagnosed as. I would suddenly be stricken with horrendous burning chest pains that would terrify me due to they close proximity to my heart and they knowledge that Lyme can cause heart complications. Of all the pain that I had experienced, this pain was the worst. I would literally roll around in bed moaning with my husband trying to console me until I'd eventually get to a place mentally where I could breathe through the agony until it passed. Because of my past experiences with doctors and hospitals, I avoided going to get this pain checked out, thinking they would say the same thing as before anyway...costochondritis.
As the years went on these attacks became more and more frequent and sometimes more painful, which was hard to believe. By the Fall of 2011 it was happening twice a week. The day everything changed I was at my chiropractor for an adjustment but as I walked in I had tears streaming down my face. I had an attack on the way to the her office and it was just calming down as I pulled into her parking lot. She thought maybe an adjustment would help so I got on her table and she said she couldn't adjust me because I had a huge pocket of fluid on my back. I was really scared at that point. I kept wondering what the hell was going on now. I wasn't even thinking this was related to the attack I'd just had. I just thought things were going wrong all throughout my body. I went back home and I was completely drained. While the worst of the pain had passed I still had a dull and constant aching in my chest. I tried to take a nap but I had terrible anxiety like something bad was about to happen. Then the pain hit me again full force worse this time than it had ever been. My husband heard me cry out in pain and came in to check on me and he said I was pale and sweaty. I couldn't talk. And I was scared. It had never happened twice in one day before. He told me to get up and walk. I told him I couldn't. He told me to try. I tried and when I took one step I grabbed my chest and collapsed to the floor and I think I cried out again but I couldn't hear myself over the pain if that makes sense. It was like the pain took over every one of my senses. It was then that my husband said "I'm taking you to the hospital now." I didn't argue because I knew I was in trouble.
On the way to the hospital I felt every bump, every turn, every stop in my chest. I was in survival mode, but a strange calmness overtook me. I was scared but my fear was more intellectual than emotional at that point. I was already so sick and weak and I was afraid anything more would be too much for my body to handle. I asked my husband if he thought I was dying and his response was, "Honey, you've been dying for years. You will get through this." As soon as we arrived and informed them of my chest pain and inability to stand up unassisted, they put EKG sensors on my chest. I was not told the results but eventually I was informed my heart was not the cause of my symptoms. An ultrasound scan was ordered of the upper right quadrant, which I thought was odd because the pain was in my chest. A blood test revealed that my liver levels high so they were checking to see what was going on. It didn't take long and the ER doctor came back with the results of the ultrasound scan. She said my gallbladder was full of stones almost to the point of rupture and that I needed to be scheduled for surgery within a few days. I don't know if it was the morphine or that I had just been through so much but I started laughing. The doctor gave me a strange look and proceeded to tell me that I needed IV antibiotics for a few days before because there were signs of infection of the gallbladder and surgery would be dangerous without treating the infection first.
I was then admitted to the hospital and began IV antibiotics that night. I had a definite herx reaction and at times my legs would tremble and I'd feel neurologically unstable, but overall I was tolerating the antibiotics. On the third day my surgery was scheduled. When I woke up the pain was worse but I was told everything went well. I had never had surgery before so I had no idea what to expect, but I was hoping the pain would be less somehow. It was no longer in my chest but in my upper right quadrant, where my gallbladder used to be. I was told I would probably go home that day but I was not recovering as well as expected. The surgeon said my history of chronic illness was probably the reason. I was in the hospital for three more days on IV antibiotics. I herxed the entire time but I was glad to have the medication coursing through my veins. There were a few bumps in the road but I got through it and by the time I was ready to go home I was extremely grateful.
Once I was home and recovered from my surgery, I noticed something very odd happening in my body. I felt lighter. That was the only way I could describe it. And I no longer felt flu like. I had felt that way for so long that I didn't know what I was feeling at first. The nerve pain was dissipating and was at times completely absent despite a dramatic reduction in my pain meds. I kept waiting for a deluge of illness to overtake me once again but it never happened. I still had some fatigue for a couple of months and of course there was the difficulty going off pain meds after being on them for years, but I seemed to be in remission! Then a year passed with no remnants of illness. In a month it will have been two years since I went into remission from that beast of an illness that claimed 6 years of my life and I have enjoyed every second! For those of you who are in caught in what seems like an endless struggle against a relentless disease or diseases, there is hope. I never thought I'd live a normal life but now I am completely well and I appreciate life in a way that I never would have if I hadn't gone through all that I did. Now it doesn't seem real and as I read part of this that was written in the midst of what I went through, I can't believe they are my words or that it actually happened to me.