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
16 Comments on “Tommy F.”
Here’s a brief update on my life as of November 2018.
I have now been on 10 months on IV Antibiotics and I still have constant symptoms. There have been few days where I experienced relief but overall I feel that everything is still a lot of the same. I’m not too sure if it is even providing me with lasting results.
I have increasingly loud ringing in both ears that is non-stop; lymph nodes that remain enlarged and sore in my jawline, under my ears, and in the back of my head; most of my lymph pain is on my left side. My upper back, shoulder, back of my head, and neck pain is back to constant, no less than #4 pain, highest at #8 so far. A little less dizziness and light-headed than last month but still present daily. I have been experiencing sleep disturbances like vivid dreaming, insomnia, and non-restorative sleep but CBD and THC do assist me with getting through the night. Anxiety and depression seem to be making their appearances again. I’ve been very much physically exhausted, walking less, and overall less movement because it just seems my stamina cannot keep up.
I still want to go to Germany — what else can I do? I do feel like I have improved since starting treatment, but I know I have so much further to go. My PCP, LLMD, and my family have decided that treatment in Germany will give my immune the chance it needs to eradicate the Lyme bacteria from my body and fight back. When I get back from my treatment, if needed, we can then discuss IVIg to treat small fiber neuropathy.
I reached out to Klinik St. Georg and I was quickly advised that based on the information I provided, they believe that I have Lyme disease based on my medical history and symptomatology. They can help me with their antibiotic augmented thermo eradication of Borreliae treatment protocol! I was elated to learn this and grateful. Their basic Lyme treatment has a duration of two weeks. During this time, they treat me with two systemic whole-body hyperthermia and an adjuvant therapy program that will include for instance detoxification, ozone, magnetic field, intravenous infusions. Upon discharge, I would receive a treatment program of oral medications and supplements to follow at home for up to 6 months. Now I am working with my family and local Lyme foundation to set up a fundraiser to make this work and get me to Klinik St. Georg.
I am ready for treatment in Germany, so I can have a chance at a Better Life.
Thank you for checking in,
Hello Tommy, I have almost the same symptoms. Can I ask you how were you diagnosed with small c-fiber neuropathy? Thank you and wish you all the best! Nenad
Thanks so much for you question!
I was diagnosed with small c-fiber neuropathy after meeting with a local Autonomic Neurologist in Boston who did a series of tests that included a tilt table test, sweat test, skin biopsy, and a few others that I cannot recall at the moment.
The biopsy was shipped out-of-state and came back positive for Small Fiber Neuropathy, no length-dependent and the other tests showed that I have Mild Adrenergic Failure with Transient Orthostatic Hypotension (i.e. I get dizzy when I rise).
Thanks so much for the well wishes! We got to stay together in this fight!
Wish You Well! Follow my other blog if you are looking for some positive insight and would like to follow along with my trip overseas for treatment in Germany! https://livinginthelymelight.blog/
Hey Tommy, I wanted to reach out because I have Lyme also, with Babesia, Bartonella, Ehrlichia, and mycoplasma. I’m sorry you are going through this. I have many of those symptoms also. I figure I will share what helped me.
For the depression, fatigue, and weakness, teasel was the most helpful remedy. It also dramatically reduced my physical pain from Bartonella, which was neuropathy. Samento is a great product but if you only use that the illness will resist it eventually (per my dr) so you must switch the herbals up. Colloidal silver, any of the Cowden products, woodland essences products, tic nosode (quite strong) oregano oil, are helpful. Desbio formulas are very good too. As far as herxes, I had severe kidney pain and a slow lymph that responded very well to renelix, and Lymphonest. Tox ex is a very strong detox remedy but helped me too. If you can find an ND who uses a Vega machine that is best because it will be able to tell you the exact formulas your body in particular needs to heal. Wishing you healing and happiness.
Before you go to Germany, if you are interested, I would highly highly recommend seeing my dr in Connecticut. He has a 90% success rate. And I don’t have horrible herxes, I can go at my own pace and just feel better. Where before I was in the hospital every other week, I am now able to walk, exercise, work part time, and go out with friends and family again. The full moon/new moon doesn’t bother me anymore, I can eat more “normalish” and my energy motivation personality and pain have all gone back to what I would call normal. That all happened in a month switching from antibiotics to herbs/rife. This is very specific and individualized, not just taking any herbals. Please reach out if you are interested I will give you his contact info.
LymeLife Update: August 2018, I am currently taking IV Ceftriaxone, 2G 4-days-on and 3-days-off, along with my supplement and detox protocol (listed below). IV treatment began as 7-days-a-week in January and has been adjusted along the way.
After lots of time, research, tears, and hope, I have decided to take the route of IV antibiotics to help treat my Late-Stage Neurological Lyme disease. With the guidance of my doctor and LLMD, we have decided to continue with my herbal supplements and vitamins while taking the IV antibiotics. I found that reducing these supplements caused negative side effects. It serves me right to try and save some money. We have added in a more thorough detox regimen after a few mental scares in the Spring.
When starting the treatment, I was very nervous. I was nervous that something bad would happen with my PICC line, like getting a blood clot or being allergic to the medications. Thankfully, my nurses made me feel very comfortable, the PICC line insertion was a breeze, and I was finding that it this whole thing was not going to be that bad. Gosh, how naïve was I?
To start, I infused my meds daily and found I didn’t have many negative reactions. I believe that is due to having a strong supplement regimen along with lots of probiotics. Finally, the brain fog lifted, and I was feeling much more aware of my surroundings, it was wonderful. After about a month in treatment I noticed some of old symptoms beginning to creep back in. First, I started to have the seizing body shock happen to me again. Typically, these episodes occur just before bed but one of these times it happened while I was with one of my closest friends. It was in the afternoon and we were on our way to my grandparents’ house for supper. I had to have her drive my car and thankfully it passed by the time we got there. It was scary and physically draining. However, I was glad to have someone there with me this time and to see what I was experiencing. Overall though, I felt I had more energy, I was sleeping better, and the anxiety and depression started to decrease.
By April, I found that I was still experiencing some constant symptoms, such as ringing in both ears and lymph nodes that remain enlarged and sore in the back of my head, jawline and under my ears. I have bad upper back, neck, and shoulder pain. I’d say my pain level is never less than No.4. I notice my symptoms tend to increase much more during colder weather, full moons, new moons, when I consume certain foods, and if I don’t get a moderate amount of sleep. I no longer drink alcohol or caffeinated coffee, except for on rare occasions, and I have greatly reduced my intake of refined sugars and processed foods. I have increased my intake of whole foods with natural detoxing properties.
Now, that I was three months in, I believe that I began to really experience the herx (Herxheimer reaction) from this treatment. My PCP believes I may also be dealing with an upset Bartonella (which I plan to address after the Summer) along with issues detoxing the dead bacteria from my system. I didn’t know what was happening to me and it was really making me deeply depressed. I often found myself wondering how much longer I go on with this wishy-washy way of living. This disease has been so unfair, and this life is like a constant roller coaster, you never know what you will wake up to every day.
Going into it, I knew that I could experience some older symptoms and it wouldn’t be easy. I began experiencing neuropathy and numbness again, throughout different areas of my body along with persistent upper right-side abdominal pain. But my most serious issue was very scary mental symptoms that I prayed would never come back. My depression, rage, and anxiety had gone off the charts. I had moments that were seriously scary. I had thoughts I have never considered possible before any of this, thoughts I have always been morally against, thoughts that seemed totally feasible; I am talking about suicide. I have considered it now on multiple occasions, in past treatments and very recently. I had a complete breakdown in my office; my life felt like I was spinning out of control and I was powerless to stop it. My brain felt so diluted that I felt I was living a haze. I even got into a car accident by hitting my friend’s parked car.
I requested to work from home but unfortunately that was not an option for my workplace and I cannot afford to take time off if I want to survive. So, I have been working full time throughout all of this. I have harshly learned that the money doesn’t matter. My health and happiness are far more important. If I need time then I must stop, take a step back, and re-center myself.
I am forever thankful for the Dean Center at Spaulding Rehab and the services they offer. I have been continuing therapy with Kerry and she has helped me through some extremely tough times. She knows precisely what I am experiencing, and she really understands. I am grateful for my friends and my family. Everyone has just been so very supportive since seeing how rough it can be. It will forever amaze me how one can have so many people around him providing tons of support and yet still feel so isolated. I have decided that no matter what I need to often remind myself that the disease is not me and it is the disease masking who I truly am on the inside. Every day I hope and reach for the man I once was and to get back on that mountain.
Since my breakdown I have taken some well-needed days off work and days off medicine when I feel a flare coming. If I could, I would like to take a month or two off work to just allow my mind and body to focus on healing I would be grateful. I have been trying to be easier on myself, I need to guide myself to understand what I am doing is not easy, it is leading me to heal, and that this will take time.
In May, I was able to work with my PCP on reducing my medicine to 5-days-a-week on and 2-days-off, this seemed to help a lot with my mind. We again spoke about treating the Bartonella along with the Lyme, but I decided that due to the upcoming Summer months I would like to keep working on the Lyme, and she agreed. I also had a chance to meet with my LLMD. We talked about gathering the testing needed for IV IG therapy and she even mentioned to me the benefits of stem cell therapy. She is on board with changing the medicine in the Fall to treat the Bartonella. She ordered blood work to test for immune deficiencies along with an EMG to test for large fiber neuropathy. We are hoping that this information along with the testing completed by my autonomic neurologist will get me the insurance approvals needed. Since then I have received my tests results back but to me all appears to be normal. Awesome, “Normal.” I meet with my LLMD again in November.
I had an appointment in June to see a neurologist who specializes in autonomic dysfunction, small fiber neuropathy, and the possibility of getting me on IV IG therapy. The bloodwork he had done came back normal, so that is 3 out of 4 results normal. I have the autonomic testing scheduled to be completed in September and will plan to go over those results with my neurologist in October.
Through June, I ended up back on 7-days-a-week for my IV medicine. That was due to my fault and not double-checking with my PCP. I decided to push through and take a few weekend days off over those 4 weeks. I noticed and immediate difference. The mental symptoms came rushing back, the pain increased, and overall fatigue increased. After meeting with my PCP again, we decided to do 4-days-on and 3-days-off, along with 7 days of detoxing. This will hopefully help allow my system to clear out the dead toxins. So far throughout this treatment there have been days where I experienced lots of relief but overall, I feel that everything is still a lot of the same.
In July, I met with my PCP for my monthly visit, re-upped my IV medicine and she connected me with a vascular surgent, to address my painful and weakening varicose veins in my left leg. I was so glad to hear that there is something that I can control and treat. After meeting with the doctor, he ordered an ultra sound to determine if valves are treatable. I received a call that we can do stab avulsion to have the veins removed. I was grateful for something that can be treated and schedule the procedure for September.
Throughout these months, I have been meeting with Kerry for therapy and it’s been extremely helpful. She was there when I needed her, even via the phone. She has provided me with lots of tools to help better understand myself and to allow myself to accept the position I am in. I feel I have come a long way with regards to my mental state. I truly believe that diet and detoxing are major components as to why I feel this way. We even decided to take a break from therapy and to keep in contact to see how everything is going. I still experience mental symptoms and irritation, but I do feel that I can better handle these triggers with the help and guidance that Kerry has provided to me. I’m forever grateful.
It is now August, and like I have mentioned, I feel that I am a lot of the same. I still have constant symptoms like ringing in both ears; lymph nodes that remain enlarged and sore in my jawline, under my ears, and in the back of my head; and really bad upper back, shoulder, back of my head, and neck pain. Overall, I am very exhausted, and I have reduced my activity levels due to weakness. Recently, I have been experiencing sleep disturbances like vivid dreaming, insomnia, and non-restorative sleep, but CBD and THC do assist me with getting through the night. My PCP and LLMD have both mentioned that the reason why my glands are so sore and overactive is likely due to my body being constantly in fight mode and not able to detox on its own, along with possible mold.
Back track a bit to my personal life, because apparently Lyme has become my full-time job and takes up most of my story. There is more to me than Lyme, its co-infections, and viruses. After some deep thought, in March I got me a puppy named Hunter. He has been incredible for me and my journey and encourages me to move even when I struggle with moving. He also allows me time to rest and heal. I cry while I write this story as he lays by my side. He truly has been my Godsend.
I feel like there is a part of brain that wants to do all these things. I want to write lyrics and want to apply myself harder in my job, however, I am discovering such a loss of creativity. I see visions of me climbing mountains, making music, and performing with my band and excelling in life. Then there is this other side of my brain that doesn’t want to allow my body to move, to be pain free, and to heal. It’s like it’s fighting me. I would like to feel more energy so that I can get out more. There is so much of my mind that wants to do more and one day I will. I need to keep fighting back because I want to get my old Tommy back. If I miss the old me, my friends and family must miss the old me too. I am ready to find a partner, settle down, and start a family. I am ready for that. Is my body ready? Do I wait? No, I don’t want to wait anymore for some miracle, I must remain vigilant and as Gram says, I just “Gotta keep on keeping on!”
August 2018 Daily Protocol:
IV Ceftriaxone – 2 grams x1 (Mon – Thurs ONLY)
IV Sodium Chloride 0.9% Flush – 10 ML x2 (7 days)
IV Heparin Fl Ten – 5 ML x1 (7 days)
Lauricidin Monolaurin Supplement- 1 scoop
Samento – 30 drops
Cod Liver Oil – 1 tablespoon
Bee Pollen Complex 1000+ – x1
Florastor 250mg – x1
Acidophilus 2bil units+ – x1
Magnesium 500mg – x2
Dandelion Root 520 mg – x3
Turmeric 500 mg – x3
Super B Complex – x3 per week (Mon, Weds, Fri)
Vitamin C 1000 IU – x2
Vitamin D 50,000 IU – x1 per week (Mondays)
Vitamin D3 5000 IU – x1
Vitamin E 400 IU – x2
TMG 1000 mg – x2
Selenium 200mg – x2
Fish Oil 300mg Omega-3 – x1
Glutamine 1000mg – x1
Milk Thistle 250mg – x1
Bromelain 500 mg – x1
Welchol – 625 mg x3
Ursodiol 300mg – x2
Activated Charcoal – x1
½ Cucumber, ½ lemon squeezed, 1” of fresh ginger, handful of fresh parsley, 1 teaspoon Manuka Honey-when I have it
Heating pads, cold compress, acetaminophen
Thank you so much for your honesty and thoroughness. I am newly dx’s after a winter of thinking I was lazy, crazy, suddenly dumb, and constantly feeling like hell. Thank you for validating my recent oath, and giving me hope. You are a great writer as well.
Hi. So did you receive the treatment in Germany? How did that go for you?
All the best to you!!
Hi Tommy, this is Terry. Glenn’s co-worker. I just read your blog…I understood everything you wrote and completely sympathize with the struggles. I just started this journey…I don’t have time for this crap…lol.. I’m in the process of trying to understand the beast within. I’ll keep you updated with my success as defeat is not an option for me. I’ll send an energy healing your way.
Hey Tom! I was just wondering if you have any updates?
Email me at firstname.lastname@example.org if you are interested in a good Lyme support group in Nashua, NH.
Tommy, my friend, I am so very proud of you! You have put our disease into words, heartfelt and eloquent.
Thank you for writing this, you describe the symptoms extremely well. You continue to fight hard even on your darkest days, I have faith that we will both reach remission!!!
Lisa! Thank you so SO much for your kind words! I’m So thankful that people can find some insight with my story. I know you can relate to this all too well! I’m thankful to have met you and you are SO RIGHT…we will BOTH reach remission!! <3
I promise I am working on providing a complete update on my story, but for now here’s a quick update:
A LOT has changed since originally posting this story 6 months ago!
I decided to take all the measures I can here, in the United States, with my insurance. I am currently on IV Ceftriaxone, which I give myself daily via a PICC line that I got on January 16th.
Since then I have seen some of the brightest days and some of the most darkest of days since being diagnosed in 2010. Some days I have so much clarity I almost don’t know how to process it. Other days I have been so incredibly dark that I have feared for my life.
I have learned and continue to learn so much about this evil disease and its friends. I learning about the great importance of detoxing the die off and the horrid consequences of not doing so.
I promise I am working on a complete update with symptoms described in vivid detail. I believe it’s important to provide as much insight to this life as I can to share with others and so I remember what is happening to me.
Thank you for checking in,
I’m rooting for you, Tom. It’s horrible. It’s nasty. It’s expensive. It’s debilitating. It’s evil…
I’m the other guy on here from Middlesex County (Westford). Email me if you want.
Thanks Alan! I work in Westford actually! I live in Ayer. Small world!
I just read through your story as well. I’m hoping that one day we can all be liberated also! I cannot believe how much I have spent over the last few years and the expenses just keep going up! It truly is evil.
I am hopeful and MUST stay that way!
I am planning to start IV antibiotic route in January and hoping that after some testing I can get approved for IV IG therapy in the Summer.
I really want to exhaust all measures here before traveling abroad. Who knows?! Maybe those therapies abroad will become available here in the states in the coming years.
I would love to get a more local support group together so that more people out our way can come together and discuss experiences and such. I go to the Dean Center’s support groups and they have been AMAZING but it’s a bit far on a Lyme energy tank. Every time I go I feel a part of something and not SO isolated. I think there are MANY more patients (especially out our way) that NEED this sort of thing.
Thanks for reading my story Paul.