Middlesex County, MA
Infected: Early 2010 or late 2009
Diagnosed: October 2010
Current health: In treatment, on a slow path to remission
I hope by sharing my story I can provide some insight into the daily life of this disease and why it may take for so long for someone who is infected to get better.–Tommy F.
“I’ve been wanting to do this for a while now but didn’t really know where to begin; so why not the beginning? My story is FAR FROM OVER, but this is where I am at currently with my journey. I hope by sharing my story I can provide some insight into the daily life of this disease and why it may take so long for someone who is infected to get better.
“Early 2010 is when I believe my long journey with Lyme disease began. Growing up, I spent most of my time playing in the woods, hiking and camping. Ticks had bitten me before, but I never kept a tally and never worried about getting sick. Lyme disease wasn’t something that was discussed, we didn’t know.
“I really don’t remember a specific tick bite but I do remember getting a slight cold in the springtime of 2010. It only lasted a few days, nothing major. Overall, I was living a pretty healthy life. I was working on a goal to get to my lowest in weight in my adult life, hiking daily, and eating healthy. Then, one evening at work while I was washing my hands, my right palm started to go numb. It alarmed me because I’ve never experienced only the palms of my hand going numb. Then it started happening on the base of my foot and, within a few days, pretty much all of my extremities, including my head, were tingling consistently, but only on my right side. It was scary not knowing what was happening to me.
“I went to my doctor at that time and saw the nurse practitioner (NP). After some blood work, she was able to diagnose me with Lyme disease in October 2010. She had me do one round of treatment, 30 days of doxycycline. I did not have much knowledge of Lyme disease and its effects on the body, and neither did my NP, apparently. After the initial round of antibiotics, I felt much better and thought that was the end of it. The numbness I was experiencing went away once I started treatment. I do remember that the doxycycline was really rough on my stomach so once I finished treatment, I was very glad to be done. Again, I didn’t know the importance of supplementing with probiotics and detoxing while on antibiotics. Coming off the antibiotics, I didn’t feel any relapse and continued maintaining my weight, lifestyle, and eating habits.
“However, as time went on, beginning in early 2011, I began experiencing strange pains and weakness in my legs, my back, and my neck. I was also experiencing mood changes and lots of fatigue. My doctor had me do a sleep study and found that even though I lost a lot of weight, I have a slight case of sleep apnea. This news wasn’t surprising to me as it runs in my family. The strange pain and weakness in my legs continued. It was like they get super heavy and really stiff. My NP had me see a neurologist, who didn’t have any explanation for what was happening. She ran some labs and everything came back normal. She suggested that I was just dealing with some typical myalgia. I was beginning to experience neurological symptoms as well as these other symptoms so my NP ordered an MRI on my brain to test for MS [Multiple sclerosis]. The MRI on the brain came back normal.
“Since I had ‘gotten better,’ I didn’t see any need to go back to the doctors. The lower back pain continued but that I assumed that was most likely due to my job. Being a chef and always on my feet, I have always had back pain so I didn’t think much of it and, to be honest, my tolerance for pain is pretty high. I was glad because all the strange symptoms were gone. I assumed I was better. Unfortunately, I shouldn’t have assumed anything. I was maintaining a pretty healthy lifestyle, keeping my weight down, and eating well.
“Over the next year, despite my efforts for a healthier lifestyle, my body had been failing me and my character was taking a heavy beating without me realizing it. I got into a serious relationship in the Summer of 2012 and my eating habits ended up changing as well as my daily hiking habits. I was still active, but previously I was living a healthier lifestyle. I started feeling many changes within. I was experiencing more anxiety about myself, my job (as a chef in a cafeteria at a local dealership), and gaining weight again. As my relationship began to struggle, I think I blamed all of my physical and psychological issues on that and took it all out on myself.
“My work was suffering, so much that I actually lost my job just before Christmas 2012. I lost my temper with a co-worker and was unable to control my emotions. Luckily, they ‘laid me off.’ I had never been fired before so this was a huge upset for me and a huge loss. This wasn’t the type of person I remember being! Before losing this job, my stress was so high and for no reason I had a serious bout of diarrhea. For weeks I was unable to control myself; it was awful. I saw my nurse practitioner again and she tested me for Celiac disease and other food allergies but nothing showed up. She said that my symptoms were likely stress-induced. Again, I didn’t know I was still sick but looking back, I must have been experiencing Lyme rage and other neuro issues along with an imbalanced immune system. I would imagine that this is probably why I had these awful stomach issues.
“My relationship ended in September of 2013, which in the long run was for the best, as I needed to take control of my health again! I moved out of the house I lived in for past 10 years and my job as a Porsche customer service representative began to suffer. My co-workers and friends were very helpful through this time, but something in me never really got better. I left my job as it was bound to fall apart. I took another job doing something that was not what I wanted to do. I got really depressed. Thankfully, in June 2014 I was offered the the job I currently have and am grateful to have a company who is supportive of my journey to better health.
“In October 2014, I left primary care because my friend recommended that I go see a doctor in Harvard, MA. This doctor is a family practitioner that specializes in Lyme disease and other tick-borne illnesses. For so long, I didn’t know that I was this ill and how serious it might be. The doctor saw the chronic Lyme right away. She taught me about the importance of probiotics and supplementing. We did about +/- two years of being on and off antibiotics, trying all different types to see what worked better for me. The doctor had a series of tests taken and saw that something was still not right with me. My system shows Lyme disease, Bartonella, and Babesiosis. I had a very low CD-57, active EBV [Epstein-Barr Virus], CMV [Cytomegalovirus], along with others. I have taken Doxycycline, Ceftin, Flagyl, Rifampin, Azithromycin, and probably others that I’ve forgotten about.
“While on every round of antibiotics, I felt better after the initial Herxheimer reaction then pretty much as soon as I finished my treatment, all my symptoms would rush back twice as bad as before. I was TIRED, I was SO, SO TIRED of not getting anywhere with my symptoms. It’s almost like the bacteria was saying ‘You thought that was bad? Just wait for it!’ I felt like I was losing my grip. Well, I was losing grip. It was all just extremely tiring, I had so much fatigue and I was starting to get this awful upper back/neck pain that hurt. Two years of treatment and I felt like I was the sickest I had been ever since the beginning. It turns out that wasn’t the worst of it.
“Late 2015 and pretty much all of 2016 were some of the worst days I have had throughout this entire ordeal. I remember days going into the grocery store, or any store, just feeling so disconnected, I would walk in not remembering why I was there or what I was doing. I would just want to break down right in the middle of the store. I was living in this constant fog and had no clue who I was anymore. I would be at parties and family functions just miserable on the inside. I would be inside my head screaming and just blank on the outside. My brain fog was so extreme I would have blurred vision and would forget simple tasks. I remember being so sick at work, sick of being sick, and feeling helpless. Through it all, I was completely useless at my desk and struggled through 40-hour work weeks. I was so unproductive and probably shouldn’t have been working, but I didn’t have any other choice but to keep on going on.
“I was also experiencing constant sore throats, hoarseness, and coughing that would not go away. Being a singer in a band and with singing being my most favorite hobby ever since I was a child, I was crushed even further. I would struggle with songs that I used to perform without any issue. I quit smoking cigarettes in February of 2015 and never looked back. I knew it wasn’t helping my health and my ability to sing with ease, so I thought I would take this step to make it better. I blamed my throat symptoms on smoking cigarettes when it was likely due to the bacteria and viruses that were active inside me. After quitting smoking, my throat symptoms got worse and I continued feeling hoarse without any relief for over a year. I started to lose interest in one of the things that matter most to me [singing], because I was disappointed in how I sounded. I thought I was permanently damaged. It was heartbreaking and extremely depressing. I began to see many other signs of neurological symptoms, like not remembering topics of conversations I am presently involved in or situations that happened recently. I was not grasping the TV shows I was watching. I found that I have increased speech issues like stuttering and am unable to recall certain words in conversation and have other smaller signs of confusion. At this point, I was just going through the motions without really caring for much of anything.
“Throughout this time, I felt like I was losing grip on reality and didn’t want to be here anymore. I was ready to give up on everything. I wanted to die and felt at times that it truly was my end. There would be nights when just before falling asleep, I would have some sort of body shock. It was so bad that I almost called the ambulance, but couldn’t move. It was almost like a paralysis kind of thing. I knew what was happening, was fully aware, but completely incapable of moving my body because it was all seized up and trembling. My fatigue was incredibly overbearing. I would sleep sometimes for 10-12 hours and wake up feeling as if I had been awake for 36 hours straight. No matter what I did, I could not even get a glimpse of restorative sleep. My muscles have been so weak that I struggle walking up a standard flight of stairs. There have even been moments when I couldn’t get myself to brush my own teeth. It was scary and saddening all at the same time. I still worked full-time and had only taken a day or two off when I had a really bad case of strep in 2016. I moved into my own home in July and outwardly my life was going well but mostly it was sleep, work, sleep, work, and no matter what I did the amount of sleep was never enough.
“On Labor Day weekend 2016, my friends and I went to my uncle’s cabin for the weekend. It was vacation, I had just finished a round of antibiotics, and I was feeling pretty good. I decided to to disregard taking any supplements because I just wanted to live my life. What a mistake that was! By the end of the weekend, I started spiraling out of control. I was completely helpless on the inside. I needed something serious to get out of this crippling depression. It’s all so crazy because I made this decision with my PCP to start treating in 2014 and since then my symptoms have flourished. I must have awoken the beast inside me that was so silent for the years prior. Lyme disease is a true monster and it has slowly, yet steadily, taken over my body, my mind, and is now trying to take my soul.
“After that awful Labor Day weekend, I decided that I needed to make a serious change to my protocol for the sake of surviving my future. So, after speaking with my doctor, I stopped treating with antibiotics in November 2016 and since then have been taking a more holistic approach to help tackle my symptoms. I take about 20 supplement pills per day and started to take Samento, which is a microbial defense, and Lauricidin, which is a monolaurin to help with the active viruses. I did tons of research to find out what is and is not working for people that are going through similar experiences. I get what I can afford, and I find that it’s really made a difference for me. I know one day I would have to treat again but the antibiotics are so harsh and Herxheimer reaction is just so strong that I really didn’t want to do that again. I was worried about the damage being done to my body. Honestly, I have a real worry about not being able to work and being debilitated from medical treatment.
“True, even with the herbals I take now, I still experience some bad days. But at least it’s not completely wiping me to the ground! Once I made it to the full dose of Samento, the majority of my disconnection and neurological issues really subsided. I am finally beginning to be more aware of my surroundings and am not so lost in my illness. One thing the herbs do not help with is the symptoms of pain. I supplement with turmeric, magnesium, and other natural anti-inflammatories to help reduce these symptoms. I have found that heat works best for my pain, so I have done Epsom salt baths and daily use heating pads and heat up aroma rice bags. Now that I’m more aware mentally, I’m also more aware of the pain that I’m in and it’s excruciating. My neck, my upper back, and the back of my skull are consistently stiff and always feel overly swollen. I suppose I just have to keep on going on, right? Some days it’s extremely challenging and the depression hits me really hard. What I wouldn’t give to wake up one day and not feel this excruciating pain.
“I did notice, after about eight months on this holistic route, that the symptoms seem to be beginning to plateau, which made me feel worse — worse about myself and worse about my future. I also still find myself being pretty forgetful in conversation and have trouble recalling certain words. I stutter sometimes, more often as time goes on. My fatigue and my stamina issues have started creeping back into my day-to-day life as well. Each day, I try to walk at least 2-3 miles; it’s not a ton but, damn, it’s not easy. Some days are more, others are less. When I do too much activity, the back of my head feels swollen and I get these really intense tension headaches. This really makes me sad. I used to be able to hike mountains and would hike miles every day; now, I struggle walking up a flight of stairs.
“My doctor told me about the Dean Center for Tick-Borne Illnesses at Spaulding Rehab in 2016 and said that I should contact them as soon as possible to get into a specialist so that I can get the IV treatment needed. My doctor and the team at the Dean Center are the primary reason why I’m on the slow path to remission. I contacted the Dean Center in August of 2016 and they were able to schedule me with one of their specialists in May of 2017. It was far away but I didn’t care, I was in! The work that has been going on at Spaulding Rehab’s Dean Center for Tick-Borne Illness has been nothing short of miracle. In a very short time I can already see the benefits, even just providing a sense of hope for my future.
“In May of 2017, I met with my LLMD. She spent over an hour with me trying to understand my symptoms and really looking to find me the right path to recovery. I told her my story and my experiences since being sick. I’m certain I forgot some details but she knew I was dealing with chronic Lyme disease. I told her about my experiences with antibiotics and that I was taking the Samento route, along with a plethora of supplements. I told her about my bouts of depression and anxiety and that I worried about being 50 years old and in a walker or a wheelchair. At the time of this appointment, a lot of my depression and mental issues were not that intense, so we decided that I would keep on the same path using herbs and begin to think about getting a PET scan to determine if IV treatment is necessary for my recovery. She asked that if I noticed a major change in my mood before my next appointment to let her know and we would get that scan earlier rather than later. At that time, since I was just beginning to plateau with my symptoms and the symptoms weren’t at all like they had been the previous Summer, I decided to wait. I planned to see my doctor again in August, thinking that I would see what she thinks and then meet back with my LLMD in October (figuring I could get the scan at that time if necessary).
“Per my LLMD’s recommendation, I started using some other services that are offered at the Dean Center such as therapy for my mind. I have never done therapy previously, but the experience has been amazing and so extremely helpful for me in my path to recovery. My therapist got me to push for my confidence back and I’m forever grateful! She offers a major sense of hope for her clients and I love that she is relatable. She has gone through the same thing, and has made it her career to help others struggling with this disease! I have also started Reiki for the pain, which has been very enlightening and very helpful! I went to my very first support group meeting and I am certain I will be going again. It was very helpful to know I am not alone. The Dean Center at Spaulding is such a great network for anyone dealing with Lyme disease. They have been a major component in my journey towards better health. I have also joined support groups on Facebook and have met some really great people through those networks. I am reading a book recommended by my therapist called Unlocking Lyme, written by Dr. Bill Rawls and, thus far, it’s been very enlightening. What I need to do is join the local yoga center so that I can work on meditation and breathing properly through stretching. I do feel I am doing all that I can to better myself and regain the confidence I used to have..
“Therapy and Reiki have been very helpful for me. I didn’t realize how much guilt I was feeling over being ill. I think the guilt stems from not being able to validate my illness because it’s not clear on the outside. I look great on the outside but on the inside it’s a completely different story. Some days I feel like I am dying. Overall therapy has been helpful in understanding that it isn’t my fault and I’m not just a lazy person, I am sick. I have been sick for the last seven years; I need to get better. I am finally learning to recognize this and need to learn how I can move on and heal. I am learning how to cope with my loss and become a stronger and better individual. Reiki has been incredible for helping me get in synch with my mind and soul.
“In August of 2017, my doctor had bloodwork done that finally showed most of my vitamin levels and lipid panels were all finally normalized, at least for the moment. I take a lot of supplements so I’m sure that is part of that reason. Most of my brain issues, such as disconnection and awareness limitations have improved with the addition of the herbs to my daily protocol, but the pain in my upper back, neck, shoulders, and base of my skull is relentless and often unbearable. I believe [the pain] is due to chronic inflammation in my lymph nodes and, well, everywhere. I also think it has a direct correlation to the persistent noisy ringing in my ears. The tinnitus is constant. Earlier in 2017, I was tested and my hearing is perfect. Mass Eye and Ear said there was nothing I could do about the ringing and that was that. Well, that makes me crazy. There are moments while having conversations that I completely forget what we were talking about and have to ask what the topic is; it’s embarrassing. Sometimes I just nod and move on and sometimes it just leaves me feeling confused and slightly sad. The stuttering and word recollection seems to be getting worse each day or at least just more common. My state of mind is definitely on the up side of things but I do believe that I am riding a very fine line and my state of mind is extraordinarily fragile right now.
“My doctor ordered an MRI with NeuroQuant be completed on my brain, along with a series of labs tests for Lyme, mold exposure, PTSD, and other levels in September. The labs came back and mostly appear to be normal. CD-57 is still low. However, the initial MRI report shows that there is moderate involvement of the cerebral white matter by T2 hyperintense lesions, consistent with probable demyelinating brain disease. It could be due to Lyme or mold exposure and it also sounds an awful lot like MS [multiple sclerosis]. I met with my LLMD in October, she reviewed my MRI and recent blood work with me and my mother. My LLMD looked at my report and knew right away was dealing with Lyme disease in my brain. She advised me that if I didn’t take action the lesions would continue to develop over time and my neurological symptoms would just worsen. I have two options: high dose of long-term antibiotics at home, which could last many months, OR I head to the St. Georg Klinik in Bad Aibling, Germany, for Hyperthermia treatment along with an intense Lyme protocol. My LLMD thinks this latter treatment is the ‘real deal’ and highly recommended that I start a fundraiser to do this treatment. I still plan to see my doctor again in November and can then make a final decision one way or the other, I may have to do a bit of both. Germany will help with my Lyme and viruses, but it won’t do anything for the Babesiosis or Bartonella, so I will still need IV treatment. My doctor would like me to call a well-qualified neurologist that will be able to test me for small c-fiber neuropathy. She was interested in IV IG therapy for me. That would also be helpful but will not stop the bacteria from growing.
“I have a series of fears going forward. Mainly, I worry about the financial burden this course of treatment will have on my future. Since treating holistically, I haven’t had the benefit of using health insurance to assist with cost of herbs and supplements as it’s not something that they cover. I’m grateful to have good health insurance that will cover appointments and testing required to diagnose the severity of my illness. The holistic path has been the only path that has provided me with any symptom relief. I have since spent thousands of dollars on herbs and supplements and have to keep spending this money to make sure that I don’t have any relapses. I know I’m still not doing enough, but I’m doing what I can afford. I am finding that each month my finances are getting tighter and tighter and I have been watching my savings dwindle down to next to nothing. Living paycheck-to-paycheck is stressful enough, but to decide whether or not to pay a bill or to get the medicine I need in order keep healthy enough to work for the money I need to pay for everything else naturally increases the stress level. I had a plan to own a house in my near future but that plan is no longer attainable and that is heartbreaking. Now, I know that I will possibly need to take a whole month off of work for a treatment in Germany that will cost upwards of $17,000 (not including airfare), and that all my current bills will still need to be paid, and I will be without any income while away in treatment. Also, I do not have any short-term disability and cannot attain it as I have a pre-existing condition and do not qualify. If I were to choose treatment in the US, a portion of it will likely be covered by insurance but I would still be without work for an unknown amount of time and then possibly left with a series of permanent damages. I feel guilty about being at work and being in treatment. I have fears about how long-term treatment will affect my job. I am forever grateful to have a supportive job, but how long can they really stand with me and allow me to be ill and in-and-out of the office for treatments and such?
“Both my PCP and everyone at the Dean Center have been very helpful in educating me and have been helpful in coping with my day-to-day symptoms. I have learned so much about better health and what will help to make my life manageable. My story is far from over and going through treatment is going to be a major life experience. This whole experience has changed who I am. I feel humbled and take fewer things for granted. I am hopeful for my future and know that [the treatment] will be a complete lifestyle change.”
Here is a list of what I take daily to help with my ever-lasting symptoms:
- Minocycline 50mg – x2 per day
- Samento – 15 drops x2 per day
- Stevia – 5 drops x2 per day
- Lauricidin – 1 scoop per day
- Bee Pollen Complex 1000+ – x1 per day
- Florastor 250mg – x1 per day
- Acidophilus 1mil units+ – x1 per day
- TMG 1000 mg – x2 per day
- Selenium 200mg – x2 per day
- Vitamin E 400 IU – x1 per day
- Vitamin D3 2000 IU – x3 per day
- Vitamin D 50,000 IU – x1 per day
- Super B Complex – x2 per week
- Calcium/Mag/Zinc Combo – x1 per day
- Magnesium 250mg – x2 per day
- Turmeric 500 mg – x3 per day
- Pregnenolone 10mg – x1 per week
- Fish Oil 300mg Omega-3 – x1 per day
- Activated Charcoal – x3 per day
- Milk Thistle 250mg – x1 per day
- Dandelion Root 520 mg – x3 per day
- Cod Liver Oil – 1 tablespoon per day
Some nights before bed:
- Tizanidine 5mg – x2
Topical Pain Relief:
- PerforMix Specialty Pharmacy LLC – Pain Formulation Compound: Diclofenac Sodium USP Powder 5%, Baclofen USP 5%, Cyclobenzaprine Hydrochloride USP 2%, Gabapentin USP 10%, Humco Salt Stable LS Cream 80%
- Lidocaine Ointment USP 5%
Detoxing / Anti-inflammation Smoothie:
- 1/2 Cucumber
- 1/2 Lemon, squeezed
- 1″ Fresh ginger
- Handful fresh parsley
- 1 tsp Manuka Honey