EDIT as of 11/5/2017: I have received many requests for a personal update as to how my treatment has been after two years. Expect me to have this health update posted in the next 2-3 months. But long story short: I am much healthier and living a more active life.
Be patient with me on this post, it’s going to be a long one, but I wanted to include as much information without splitting it up into multiple posts. There is a method to the madness!
I’ve been really excited to share the latest leg of my healing journey! I had been on intensive, long-term antibiotics for over a year and during summer I decided that I was absolutely finished with them. My gut biome had been destroyed, my symptoms were worse, and I had no signs of improvement. I had been spending nearly all of my time in bed. So I have made the difficult decision to switch to holistic treatment for Lyme disease.
Many of you may know of Dr. Dietrich Klinghardt and the impact he has had on the Lyme community. You may have even seen him in the Lyme disease documentary, Under Our Skin, available on Hulu. He has worked for decades supporting research, education, and treatment in the Lyme and chronic illness community. Dr. Klinghardt also runs a clinic in the Seattle area called the Sophia Health Institute, where patients from around the world come to get excellent healthcare.
(Here’s a cork board in the IV room at Sophia where you can place a pin on the city that you’re from! Not all patients here have Lyme disease, but the majority do and it’s amazing to see how widespread it is. Lyme is a global disease.)
As of now, I have made two trips to Seattle for treatment. Originally, I was traveling with my boyfriend, who has been a patient of Dr. Dahlgren, one of their top doctors, since January 2014. I was still skeptical of alternative medicine and only trusted my traditional Lyme doctor, despite my health worsening each day, but that’s a story for an another time. I didn’t want to switch to a new doctor on the opposite end of the country without seeing what goes down at the clinic firsthand, but I wanted to take advantage of the resources while I was in town.
During my first visit, my old LLMD, who is not trained in this form of medicine, wrote me prescriptions on what treatments he wanted me to do while I was there. These prescriptions were not for medication, but rather for the treatments at the clinic. I don’t recommend doing this. I know that changing treatments can be a massive leap of faith, but I cannot stress how bad of an idea I think this is. A doctor that doesn’t understand the way the clinic or treatments are run probably should not be writing these prescriptions. I also had to schedule everything without a doctor to consult if a problem arose or I reacted poorly to a treatment. So there was a lot of confusion during my first trip.
However, I did get to sit in on all of my boyfriend’s appointments and observe. When one finished early, his doctor, Dr. Dahlgren, asked if I’d like to be muscle tested using Autonomic Response Testing (ART). I leaped at this chance! I’ve always been a skeptic but I’m also very open to trying new things. Through this brief muscle testing, I showed positive for Lyme disease and co-infections (you didn’t see that coming!), with a highly active Babesia infection, parasites, viruses , MTHFR issues, and low neurological function. This was an absolutely mind blowing moment for me! Everything that the doctor determined through ART were things that I had not told her and been backed up by previous lab tests. Not only was everything accurate, but it displayed the compassion of Dr. Dahlgren. She also developed a small protocol for me to follow. Three months later, I was in Seattle again for a more intensive version of what I had just experienced.
THE FIRST APPOINTMENT
After the experience during my first trip, I was impressed by Dr. Dahlgren’s intelligence and compassion and knew I wanted her to be my doctor. I felt a connection during our brief session and her personality really resonated with me. No matter which clinic and doctor you choose, there is going to be a wait period. For me, it took about three months to get an appointment, but the time can be shorter or longer. It’s going to get really complicated once you start scheduling, because you’re going to be doing a lot of IV therapies and treatments that may be canceled and rescheduled. Get ready to break out the highlighters, pens, and notebooks and channel your inner micromanager!
The first time I met with Dr. Dahlgren, she immediately took my anxiety away. She focused all of her attention and energy on me, which was a monumental weight off my shoulders; an unexpected feeling after years of dismissive doctors. Not that I expected her to be bad, but it was uplifting to feel like every word I said was truly being heard. We went over my entire medical history, all the way from birth. I was told to bring bloodwork and tests from the past two years. We went over my symptoms and how they have evolved from the onset of my illness two and a half years ago. She ordered more bloodwork. Afterwards, she muscle tested me for various pathogens, problem areas with my organs, and medications that work harmoniously with my body. At this time, my problem areas are Lyme, Babesia, heavy metals, parasites, viruses, and fungal infections. She created a protocol that she would add to and change around over the next two weeks and told me what types of IVs and other appointments I should schedule. She also instructed me to have my amalgam removed. The entire new patient appointment took two hours.
MUSCLE/AUTONOMIC RESPONSE TESTING
Muscle testing is amazing. I mentioned earlier in this post that I was a skeptic at first, but I’ve come around after experience and a lot of research. The fact that a doctor can determine what is wrong with you without even talking to you is astounding to me. There are videos, podcasts, and articles all over the internet about ART, so I won’t go into the specifics of it here. The doctor had me lay down on a flat table and raise my arms above my head. Then she would place slides, almost like petri dishes, with different microorganisms inside. She would pull on my arms and note the specific responses of my muscles. She does this with medications and supplements too. It truly is an amazing and insightful experience into complex chronic illness.
To me, this is the distinction between alternative and conventional medicine. If you’re diagnosed with a chronic illness like POTS, multiple sclerosis, Hashimoto’s, lupus, rheumatoid arthritis, CFS/ME, ALS, or more, you’re told that there is no cure, only symptom management. Instead of investigating and treating the cause, you are told to treat the symptoms. You are given pain medicine, hormones, diet changes, stimulants, and more. While there is nothing wrong with medications and diet changes, this perspective is lacking in determining the root of disease. Perhaps the patient is suffering from a chronic bacterial or parasitic infection, nutritional deficiency, genetic defects, heavy metal poisoning, toxic mold exposure, chemical sensitivities, or something else entirely. I know that this was the case for me. I was told that I had CFS/ME and immune dysfunction and that it was something that “just happens”. Just a few months later, we figured out that it doesn’t “just happen”, and that I had Lyme disease through blood tests. All of this can be determined by autonomic response testing as well.
Almost every doctor appointment includes some form of neural therapy. “Neural Therapy is a treatment system for chronic pain and illness. It involves the injection of local anesthetics into autonomic ganglia, peripheral nerves, scars, glands, trigger points, and other tissues. It is believed to act through normalizing the illness-related dysfunction of the nervous system.” (Klinghardt, 1993) Most of the time, procaine is used in neural therapy, but other medications can be used. So essentially, you’re going to be jabbed with a bunch of needles. Not for the faint of heart!
On my first appointment I had neural therapy on my thyroid. Needles in my neck was not exactly what I was hoping for that morning, but it wasn’t that bad! In another appointment, I had neural therapy on one of my tattoos. Procaine is a breeze.
I don’t find neural therapy particularly painful. It’s definitely not pleasant, but after years of being stuck with needles, it’s not terrible. It is necessary to inject procaine into scars, and I think that’s the most painful part. I have four large abdominal scars from my gallbladder removal surgery that are very painful to inject. During these injections I focus on how important they are for healing. I have a mantra when the neural therapy gets painful: “This is necessary for healing. This is healing my body.”
Back when I first fell ill in 2013 and was desperately searching for answers, I read online that cavities can cause all kinds of health problems. I knew I had a cavity, but I didn’t have dental insurance so I left it in my mouth. Since I thought the cavity was the answer to all my problems, I shelled out the money and got it removed. Except I had it replaced with an amalgam filling. This was probably one of the worst things I could have done for my health. Amalgam/silver fillings are made of mercury, which can poison the body and suppress the immune system. Not a great thing if you already have an immune suppressing condition like Lyme disease. I also was told that antibiotic therapy for Lyme is pointless when you have metal fillings since antibiotics chelate metals. No wonder the antibiotics were making me much more sick. Big lesson learned.
It was recommended that I find a biological dentist to do the surgery. After learning that the amalgam may have held back my progress for the past year, I felt like I had to do it immediately or it wouldn’t get removed at all. So I found a dentist in Seattle and had my amalgam removed and replaced with a nontoxic composite filling. It was a very easy, in-and-out process and I was able to continue with other treatments on the same day that it was removed.
I’ve only done a few types of IVs in Seattle, but they offer all many types depending on what your doctor feels is necessary. Here’s what I’ve done so far:
- Amino Acid IV: I always tell myself I love these as a treatment, but they are truly grueling. I don’t know why I insist on doing them, but they muscle test really well for me and Dr. Klinghardt likes to use them. They’re kind of expensive, so I’ve only done three. Each amino acid IV is like running a marathon. I assume, I’ve never ran a marathon. I make sure I eat something thick and carb-y before and during, since the IV makes me nauseous. It lasts three hours long and, without fail, will give me a migraine. Amino acid IVs balance the neurotransmitters in your brain which can cause some mental side effects. My depression and anxiety seem to be better a few days after I’ve done an amino acid IV. I cried for about an hour after my first one. Then, I got to pet a puppy and go to Edmonds beach and all was good in the world.
- Glutathione IV push: This has always been my ride or die IV.Glutathione is an antioxidant that works great for cellular repair and detox if you’re in the middle of a Herxheimer reaction.
- Phospholipid push: Phospholipids cross the blood brain barrier, help with neurological symptoms, and rebuild cell membranes that have been destroyed by Lyme bacteria. I’ve done two of these IVs and can’t say I’ve noticed anything from them. I know they’re valuable in treatment, but I’m not sure if they have any noticeable effect for me.
- Artesunate push: I did these on my second visit. This is the IV form of artminesin, a strong anti-malarial targeted towards babesia. Your body has to be very strong to handle this drug, so I was beyond excited when I could tolerate it. I did two vials that were very quick and I tolerated them pretty well! I’m not sure if it was travel exhaustion or the treatment itself, but I had full body pain and exhaustion. Nothing that I’m not used to. It was overall an exciting experience!
- Myers cocktail: in the past I have had bad experiences with Myers cocktails at different clinics. However, HHA and SHI make sure they are methylated and tailored to your specific needs. I didn’t notice much beyond pain in my arm (totally normal, vitamin C isn’t a joke) but it may work on a cellular level and is supporting things that I’m not noticing. It also chelates metals, which are a huge problem for me, so that could be why I don’t feel fantastic. It’s a very common therapy!
DETOX + OTHER THERAPIES
- Colon Hydrotherapy/Colonics: a major form of detox. You can have what’s called “open system” or “closed system”, and personally I prefer an open system colonic called the Angel of Water. Your body eliminates toxins through the colon and colonics work by cleaning them out with gallons of water. They’re not very sexy or fun, but I personally feel so much better afterward. They cause a lot of cramping, but you can do a castor oil pack during the treatment to ease the pain.
- Body Work: a type of massage therapy and physical manipulation that can help relieve pain and help improve organ function. Sometimes it can be uncomfortable, like when working with the ribs and liver, but I’ve found it amazing for my back and neck pain. I also occasionally get cranial sacral therapy during body work, which helps with my migraines!
- Lymphatic Drainage: heaven. I have POTS and my health isn’t very good so I spend a lot of time in bed which means my lymph isn’t flowing. This is bad because it can allow Lyme bacteria to build up in your lymph nodes. Lymphatic drainage is a relaxing way to facilitate the movement of lymph in the body. You’ll also learn how to do it at home! I’ve had amazing experiences with the practitioners and it has been great for my emotional well being as well.
- Infared Sauna: I’ve never done either of these at the clinic because my POTS is too bad, but the sauna was recommended by my doctor. Sweat in saunas releases higher quantities of toxins than everyday sweat.
- Ionic Foot Bath: this is another detox therapy that I have no experience with but is offered.
- Acupuncture: so good for calming down the nervous system, which is in a hyper-sensitive state in chronic illness. I’ve done acupuncture twice at Sophia and was able to control my heart palpitations after one sessions. My second session utilized COLD laser therapy while receiving a brain and gut acupuncture pattern. I have a lot of trouble relaxing and my sessions with acupuncture helped me work towards that mental state. You can also work towards family constellation therapy in other acupuncture sessions, but I haven’t done it yet. I look forward to more.
- Medical Qigong: I know I describe a lot of things as “amazing” or “great”, but I truly do not know how to put into words how my medical Qigong session went. After coming down the stairs, I told my boyfriend, publicly and in tears, that it was magical. I couldn’t really explain to him what I had just experienced. In Chinese medicine, different organs are associated with certain emotions and feelings. Bear with me, but it was almost like a medical and spiritual therapy appointment where the healer intuitively knew what I was feeling.
- Eng3 NanoVi: I’m not sure how this works or what exactly it does. I’m not an expert by any means. Their website states that it reduces free radicals and oxidative stress. You put on nasal cannulas and breathe in humidified air that is first passed through specific light wavelengths. I’ve used this while getting IVs but I haven’t used it enough to say anything good or bad.
- BioMat: BioMats are another product that I don’t know enough about, but have heard plenty of things, good and bad. I personally think the price tag that comes with them ($2,000) is hefty enough to turn anybody off. But when I was in the IV room and there was an oppurtunity to try one out, I kept an open mind. BioMats are supposed to relax muscles, reduce pain, increase blood flow, support the immune system, have grounding effects, and more. I laid on it for about 30 mins and didn’t feel anything besides the nice warmth that it creates.
My final appointment with Dr. Dahlgren left me feeling prepared for the trip home. We fine tuned my protocol with muscle testing, discussed my recent blood work, and she answered my questions. I also met with another doctor to start my first dose of low dose immunotherapy (LDI). I think the most significant thing that she told me is that I will get better. I don’t like to cling onto time frames because healing is a long journey, but we are aiming for me to be healed in two years, with lots of hard work on my end and regular visits every three months. This kind of hope and confidence is the most I’ve felt in over two years.
I have been home now for a couple of months and am feeling slightly better cognitively. Not amazing, but I feel well enough to write this post, which I couldn’t do beforehand. I did a parasite protocol. I’ve been occasionally cooking my own healthy meals, which is a huge step for me. I take all my medications, do coffee enemas every other day, use antiparasitic/malarial suppositories, take detox baths, and rest a lot. I had a phone consult with Dr. Dahlgren and we are putting more effort into treating my depression and anxiety. Focusing on my mental health is a huge part of my healing. I’ve had my second dose of LDI at home and am being monitored by my LDI doctor. This is the most hopeful I’ve been since I got sick. I’m slowly starting to notice changes here and there. I’m very excited for this to be the start of my path to health!