Ashley Vanni's 10-year Journey to Diagnosis with Chronic Lyme
It took Ashley Vanni 10 years and 55+ doctors and specialists to reach diagnosis for chronic lyme disease and thyroiditis. Her story is one of grit, perseverance, the power of a support system and believing in yourself. Ashley spreads a powerful message about how Western medicine can let people down, especially young women, but is an inspiration to all of us about advocating for yourself. She is now an advocate for lyme and tick-borne disease!
Ashley’s story is part of Rupa Health’s Be Your Own Healthcare Advocate series, where we share the stories of patients who take their health issues and wellbeing into their own hands.
What do you do for work?
Various/Self-Employed/Independent Contractor: Remote Professional. Writer. Branding Strategist and Specialist. UX Writing, Content, Research. Marketing Specialist. Consumer Behavior & Psych Specialist, Branding Behavior & Psych Specialist. Consultant.
What health issues were you experiencing?
Undiagnosed Thyroiditis (thyroid that differs from classic hypo or hyper thyroid disease, autoimmune source, autoimmune unknown). Lyme Disease & Chronic Lyme Disease (10 years and 55+ doctors and specialists before reaching diagnosis).
Exposure to toxic mold in 2009 (symptoms magnified after this point) as mold or lyme alone is toxic for any human. The combo is usually deadly from what I have learned, I am lucky to be alive. I was looking at complete organ failure when I began treatment - chronic acute antibiotic resistant strep/staph/and macrons (MRSA specifically in sinus, common in mold or lyme or autoimmune patients because the bacteria balance is off) in my eyes, nose, ears, and scalp monthly, treated with Bactrium (oral) and Muprocin (ointment) synthetic antibiotic and something only to be used a few times a year, I was having to use almost monthly. This made my primary physician incredibly nervous, for fear the strains would build immunity to synthetic antibiotic and not know what to treat me with as these infections are deadly if they get to the heart/sepsis. I had to go outside of my health insurance network for immunology (hemato ozone via IV and nutrient IVs alongside vitamin C and peroxide therapy). Peroxide penetrates muscles and connective tissues, giving a cellular scrub. Lyme can’t burrow or hide from this. The assistance allows the immune system to heal and once the immune system is properly functioning, it is very difficult (almost impossible) for Lyme to thrive -as it can’t hide from the body’s immune system.
Our immune system is our firewall, we can be exposed to countless things and not get them or show any symptoms because a properly functioning immune system keeps them dormant (not effecting us) and depending on what we are exposed to, the immune system can even eliminate. After 2.5 + years of treatment (in 2019), I newly entered remission for the 2nd time; the first time was in Fall 2018 (remission interrupted by California Wildfires, Bay Area air quality was worst in the globe for more than a week). Because, the toxins and poor air quality reduce oxygen in the blood (hemato ozone), cancer and lyme patients can come out of remission during such an occurrence. Lyme & Cancer do differ in very specific ways (they are different diseases), but lyme and cancer have more similarities as we think such as their cellular environment (cell wall) and cellular behavior. As well as their ability to “hack” the body’s DNA and immune system so that the parasite/Lyme or Cancer (tumor) can co-exist and survive in the body - surviving in the body taxes our immune system and exhausts our nutrient resources in ways we can’t bounce back from.
Often it’s not the “Lyme” or the “Cancer” that kills, it is the body’s defense being down and the inability to bounce back from any virus/bacteria exposure or treatment (such as antibiotic or chemo). Because, the medicine that is designed to kill off the bad stuff - this also has an effect on the body. If the body doesn’t have any ammo or resources to pull from, often the treatment designed to help can also kill as well (not intentionally, but body isn’t able to bounce back after the die off). This is why the practice of immunology and immune-building alongside antibiotic therapy/chemo etc. or before the patient even begins antibiotics/chemo (so they will be boosted and have ammo to use and bounce back from). This is why immunology needs to be applied alongside autoimmune disease (lupus, lyme, thyroiditis, and others) or cancer. It should be included in network. Just as the brain is directly effected by physical illness and mental illness , so is the immune system. The immune system is still part of us and essential for our health and vitality.
It shouldn’t be billed to patients as an “elective” protocol as it is not “elective” it is medically necessary.
How did you go about finding a solution? How many doctors/experts did you see during this time period? Tell us about your journey.
10 years and 55+ doctors and specialists to reach diagnosis.
Most of these doctors and specialists were “in-network” for my health insurance. Insurance I have to pay a high premium for because I am an adult woman in my early thirties (and before in my twenties) with chronic conditions - I am seen as more of a “risk” and liability to insure. So I have to pay about $500 monthly just for coverage alone (this is in addition to copays for imaging, tests, labs, medicine, treatment, even if they work or do not work or even if the tests show inconclusive). When I was looking at organ failure and having numerous migraines a month, the last putting me into a seizure in 2016 - my doctors did not know what was wrong or how to fix it. They had me sign a form to release my medical decisions to an elected trusted person (I chose my Father, who is truly my guardian angel - gave me life and has saved my life numerous times during this chronic health journey) because they weren’t sure if I would make it.
A woman in my late twenties at the time, can you imagine the amount of stress and fear for myself, but also for my family? An age group we are believed to be at our health prime; a truth for many, but not for every person.
We need to be gentle and stop assuming that women in their twenties and thirties always have “depression or anxiety” before running other tests and imaging.
Sometimes the mental symptoms are a direct aftermath of something purely physical (such as thyroid storm or lymecarditis, autoimmune cause, cancer cause, encephalitis etc).
Women in pain are not always women seeking attention, playing victim, emotionally unstable, crazy, hypochondriacs, needing to get a new job, needing to settle down and have babies (or not have babies because anxiety and hormones are too all over the place) - trust me, I have heard it all.
My father was shocked by what I had had been asked by some doctors (or accused). One primary refused to treat me until I got a psych analysis - my psychiatrist sent me back and said that I am very strong mentally, that there is a physical stressor and it is my primary’s job to figure it out (this was before 2013, needless to say I have a new primary physician now). Sure enough, also after getting a second opinion (a specialist outside of my network, Chinese medicine specialist that heals UFC fighters in the Bay Area had requested an MRI with iodine contrast for my hips) we found a cartilage tear and I had to get hip surgery in 2013. We know now in 2019 that this was probably a result of the lyme, as I had no physical trauma such as an accident or fall (this took a year + to get diagnosis, the surgery was done by specialist in my network and was very successful, it was just difficult getting the diagnosis). Lyme feeds on cartilage and connective tissue, and often the patient’s vitamin D, B12, collagen, folic acid, magnesium, ALA, glutathione (liver detox agent that body makes itself), among other vital nutrients are dangerously low because of the Lyme - making cartilage and joints brittle and easier to break and tear through. Muscle wasting can also happen, making tears and injuries more common in those with Lyme.
My father is a retired fireman of 33 years and once he retired he made it is mission to help me, truly my guardian angel. He took it upon him to research Lyme Specialists and Toxic Mold Specialists (two things he suspected that my full coverage health insurance seemed to have no experience in, refused to run tests, and refused to discuss test results taken outside of the in-network lab, even DNA and specialized tests that their labs didn’t offer). In 2017 my life changed for the better, we found a specialist through word of mouth (my father’s co-worker, whose mother had stage 3 cancer and was on bed rest, was able to walk within 3 treatments at this specialized clinic). A clinic based in immunology. They knew what to test and even tested things that they though it wouldn’t be (just in case it was) - more of a “science and research approach” than a purely “western medicine” approach.
They realize that not every person, even with the same disease or strain, is going to show symptoms in the same way (especially in cancer and autoimmune as these are incredibly complicated).
We have different blood types, different genetics, different pre-existing, different hair color and eye color than other people - we come in different shapes and sizes, races and mixed races. Demographics. Etc. Sure, two people sharing the same disease might have some commonalities and similarities in symptoms, but not everyone is going to manifest an illness the same way. Especially if a DNA altering component (such as cancer, Lyme, mold, or radiation exposure, chemical exposure) changing the chemical makeup of the body and DNA combined with the individual’s genes, DNA, pre-existing conditions, diet and lifestyle, age, etc. AND other countless variables, it’s going to create a range of different outcomes, just like any experiment when we change a variable (or more than one).
Diagnostic and healing is not linear, sure there are known theories (proved in cases again and again) that can be trusted, but we also must remain open and curious , allow the data (or the individual) to teach us more about the disease (or uncovering it during the diagnostic process). That if this person doesn’t fit in the 75%, the 50% the 30% the 20% the under 10% - all these percents still matter, are still valid. Even the 5% of cases, these 5% are still human lives that deserve medical care (even if it is more difficult to diagnose, treat, or understand).
I have a great respect for doctors and medicine - western medicine, eastern medicine, and alternative. As well as science and research. For the data, theories, and discoveries they have made are healing lives, saving lives, and truly remarkable. Their jobs very important, and also risky, deserve to be respected. They have a huge responsibility being the “advisors” and healers of human life. And they have to have boundaries, limits, known truths and proofs yes. They have to rely on scientific data, yes. They have to be careful to not bring in too many variables, yes (because when there are too many we don’t know if the variable works or not, just as with any science experiment). But also, in science, and in the laws of life we are constantly changing and evolving. So is nature, bacteria, virus, disease. So are human beings. So if a person’s case isn’t matching the average or more “common” and “reliable” data gathered - it doesn’t necessarily mean that the test is “impossible” or “false”. It simply means “unknown “ and needs to be analyzed and discovered, learned about. The patient could have the disease suspected and show symptoms differently (because of their DNA, genetics, exposure, pre-existing, other variables) than the “average” patient sharing their disease. The patient could have the same disease and respond to various treatment protocols differently, because of a number of factors and variables (blood type, gender, age, DNA, genes, pre-existing conditions, etc) - it doesn’t mean their diagnosis is “false” simply to try another treatment protocol that’s a better match.
Sometimes, the smartest person or Doctor in the room, or the smartest scientists etc are not the ones who have a track record of treating a specific disease in the same way over and over, sometimes the smartest thing to do is to remain curious. If the disease isn’t responding/behaving as it usually does, if doctor suspects a disease but the lab tests are not producing the same results the labs are used to seeing (but the patient still shows symptoms classic of this particular disease) - sometimes, it is smarter to remain curious .To remain open to the possibility of the disease/bacteria/diagnosis behaving abnormally (not impossible because it’s not known, still possible and waiting to be discovered). To see the experience as an opportunity to learn more about this fascinating complicated miracle and machine - the human body. The opportunity to learn more about a particular disease, bacteria, virus, etc. Not a direct insult to the doctor’s credibility or intelligence.
Science is weird, it’s complicated. It’s ever-changing and evolving and if tests are not showing the expected results, perhaps it’s the wrong test not the wrong diagnosis.
There’s a saying “ Insanity is doing the same thing over and over and expecting a different result”. Sometimes we have to change the variable in the equation and consider this as a potential fact - because science is ever evolving and ever changing. We don’t know it all (neither do doctors) and that’s completely okay - when we know it all, we’re in trouble. I think this is why my immunologist specialist (out of network) is so gifted in what he does - not that he is necessarily smarter than other doctors or specialists, but that he is OPEN to allowing new data (the patient’s body and symptoms) to teach him. To lead him to discovery .To learning new things. Because of this approach, I was finally able to reach remission - because he was willing to try other tests - such as biofilm urinalysis , heavy metals urinalysis, genetic and DNA bands, nutrient deficiency, hormone deficiency, etc. And let the data speak to him. And while we wait, treat me for what he could (with data collected) and watch how my body responded to it -even if some of the tests at first were inconclusive (equivocal is equivocal, not known. Differs from negative, negative is negative. Positive is positive). His willingness to allow my body and data to teach him is what saved my life. I am so thankful there are doctors willing to approach the “difficult” with curiosity and the opportunity to learn more about the disease(s) and the human body for the incredibly complicated and miraculous science it is.
What does it mean to you to "be your own health advocate"?
My Father, watching me go through this all, stepped in (as my guardian angel). He saw how exhausted I was, how I had been betrayed by my insurance that I pay for - simply because I was “too young” to be ill, that I must be choosing it or making it up for attention. That I must be “depressed, anxious, crazy, or hormonal” because I am a woman. Would these questions be asked to a male my age? Probably not. And don’t get me wrong, these are all also very valid health issues and medical issues that also need specific care and specialty- but not the answer or case in every woman experiencing unknown chronic illness or symptoms that doctors are having a difficult time figuring out. This experience broke me down.
I didn’t necessarily want to “die” but I wasn’t afraid of it anymore - I had accepted the possibility .That perhaps it was my time to go, I didn’t want to fight anymore .Fight doctors and fight for my mental state, fight for my rights to be heard, for my rights to choose the medicine I want to put in my body. The right to choose the specialists who treated me. I was tired. I didn’t want to fight anymore. I was too busy fighting for basic life daily, I could not afford to devote any more energy to argue with these doctors who did not believe me or not want to listen because I didn’t fit in their box as the “average” patient. My father heard of the immunologist through his co-worker and told me that he would organize the appointment, the medical trip (out of state), and pay for it - would I do it? I told him if he came with me, I was open to trying it. I was afraid to see any new doctors because of my experience with past ones.
I didn’t have the energy to defend myself. And I cannot stress enough that being your own advocate (listening to your inner self, if something doesn’t feel right it’s not right) is vital. It is so important. If you don’t trust yourself and your communication within your own body (your thoughts, feelings, gut instincts, how your body reacts to medications etc).
It’s not just a physical experience, it is also emotional, mental, spiritual. Denying your body it’s own truth, allowing doctors to tell you how you should feel instead of how YOU do, honoring other’s truths as supreme to your own truth (what works for you and what does not) will silence your life force. I think being your own advocate is learning to trust yourself, that you live here (in your body) and while you appreciate others advisory and knowledge and their willingness to share it with you, that at the end of the day you get the last word.
You are the ONLY one who knows what is right for you, and what is not. It’s so important to honor that.
Of course, be open to learning new things and letting go of old beliefs/patterns/ways of thinking that no longer serve you or your healing state or your new way of being. No one can tell you how to feel, take your power back. Power doesn’t have to be loud, it can be soft and loving too. It can be shown in healthy boundaries. In saying Yes and in saying No. In saying No, I don’t agree with that. Or No, that may work for some but it doesn’t work for me, let’s try something else. Or Yes, I’m not sure and I’m afraid but I am willing to trust you and I am willing to try. Remission is possible for those who remain open to it, for those who are willing to try. And to be willing to try, we must be our own advocates. I want to support my fellow warriors in their healing journey and I genuinely hope that sharing my story and experience inspires your healing path and your relationship with self as your own advocate. Your loyalty and promise to self, to never betray oneself, to have your own back. In the most gentle, loving, honest, and communicative way possible.
A wise man (my immunology specialist) once shared with me the most healing words I have ever heard from a Doctor, “I believe you”. Our first meeting, this is what he said to me. Words that were sweet honey to my ears, after 10 years and 55+ doctors telling me anything but. I think this breathed new life into me and gave me a sense of hope. The energy I needed to be willing to try, the hope to believe that I could heal. And I did. I believe you can heal too, you just have to be willing to experience it. However that comes to you. The healing path is personal, and unique to each individual.
When did you realize something wasn't right? What symptoms were you experiencing?
I had chronic, acute, severe infections in my nose, eyes, ears, and scalp. In 2015 infections, almost monthly (not responsive to antibiotics). The synthetic antibiotics my doctor gave me should be at max 3 times a year were a monthly regular. Also migraines (with aura) that I would have monthly or more that put me in the hospital; b/c only thing that would work for them was a combination of Raglan and Benadryl via IV (something that had to be administered in the ER). Migraine with seizure. Sleep spells for 3-10 days at a time.
How long did you struggle before either getting a diagnosis or starting to feel better?
10 years and 55+ doctors and specialists before finding a specialist who could treat me. 2.5+ years of IV hemato ozone (blood ozone transfusions), nutrient ivs, and vitamin C/peroxide ivs ) at first weekly, then bi-weekly, then monthly, then every few months. In 2019 I am nearing remission for the second time, so I am really thankful and excited. I entered remission in 2018 but it got interrupted with the California wildfires (smoke, toxins, air quality) pushed me out of my newly reached remission and I began having symptoms again. We caught it early enough and I began treatment again in January 2019.
Tell us about your lowest point. What happened, how did you deal with it?
Living for survival, forgetting how to “truly live”. Forgetting the joy aspect, the gift aspect of human life. It is precious, such a gift.I have a new respect for life. I have always loved life and appreciated it, but I think that after numerous near death. t’s not something I would wish on anyone, it’s not something we can plan for or really understand until we experience. Not something we would expect in early life. I also won’t wish it away. I am thankful for it. As incredibly difficult as the journey has been, it has re-birthed me in a way. It’s blessed me with an incredible amount of strength - I know my limits and I trust in the ability to bounce back.
What ended up being the most helpful resources or treatments for you?
Immunology. My immune system was broken. It was “asleep”. It didn’t even know the “enemy or invader” (lyme and toxic mold) was there. My immune system had been hacked by these things so that they could live off of my body, co-exist. Once my immune system was alerted to the invasion, it hyper-reacted. Attacking all in its path, including me. The “herx” is not the most pleasant of experiences, but it will pass. Herx is the body temporarily thinks it’s dying as the invader (lyme, mold) dies off. Our body needs rest & nutrients to recover. Once our immune system heals, our body can handle anything thrown at it.
What was the most frustrating part of your journey?
Having my trust in myself (knowing what my body needs) and my own truth being questioned. This took years to heal and is still something I must nurture and nourish and heal daily. Trust damaged between doctors-patient was also difficult.Also the traditional work place setup; invisible disabilities and autoimmune. It’s hard to not reveal very personal information without it being misunderstood, used against you (because others see you as liability). Or that “remote work” is somehow a reserved privilege. For some, it’s necessary to balance career alongside health limitations.
What was a high moment or a turning point in your journey?
Every breath I take is a win. Each day I have a good day is a win. The bad days still happen, but they are getting less and less, also a win. We are living breathing miracles, each breath we take is a gift of life. I think this is the BEST high ever; because we are not promised life. To live in a way that serves your true self, your authentic and genuine self. In a way that blesses your lives and others too. This is our legacy, something that lives beyond us even after we pass on.
How has this experience impacted or shaped your life today?
It has been a catalyst. A rude awakening. An incredible platform to create positive change in systems that have been needed for some time. To create space and communication for the healing that needs to take place, the change that myself and my other Lyme (in the health world). I think the world is in a state where we need more compassion for each other, respect for human life, life itself. To know our direct actions (inactions) can have both pos/neg experiences on self & surroundings. Through little actions we take each day, we can influence others positively. We can heal each other, one action & interaction at a time.
What motivated you to keep going in search of answers? What made you determined to find a solution?
It’s kind of difficult to explain, something internal. Not really conscious. Hard wired. I truly believe the human body is wired to survive. If someone tried to take that from you (such as a murderer) wouldn’t your natural instinct be to run and hide or to fight back? Similar experience, ingrained. A doctor tells you, “ I don’t know what more I can do for you, I will do my best to make you comfortable” there’s something within that says “ NO. I will survive this”. Whether it’s consciously recognized or not.
How did holistic or integrative care shape your journey?
Something that holistic, integrative, and alternative considers .Yet many “western medicine” will call “Bull-Winkle” (a nice word for bull-****, a term that an infectious disease specialist in my health network used with my IGENX lab tests). IGNEX is a re-known lab, but because he was simply insulted that I went out of network, b/c he couldn’t read and interpret them, or because he didn’t think of it first. This particular doctor also told me that “hemato ozone” aka blood transfusions would kill me- the very transfusions that saved my life and made remission possible. Diagnostics that could take years for western medicine (in network) to make. Some people don’t have years.
How difficult was it for you to find a holistic or integrative practitioner? What were the main barriers here?
55+ doctors and specialists. 10 years to find a specialist that could treat me effectively and to reach a diagnosis. I would have to credit to divine intervention. Some humans truly serve as angels here on earth. I think I got very lucky.
How are you doing today?
I am happy. I am hopeful. I am touched that companies like Rupa choose to talk about Lyme and educate via social media posts. Bring more compassion and awareness. I am so happy we crossed paths on Instagram.
What do you do to stay healthy today?
Take it day by day. Listen to your body’s signals and honor it. Nurture it and take care of it. It takes such good care of you. Walking helps, eating healthy. I personally love making fresh pressed juice. Dairy Free and Nut free (due to allergies, caused by Lyme).
What advice do you have for someone that's trying to figure out their own health concerns?
Knowledge is powerful, sharing is to be appreciated. Doctors, loved ones, etc all have valuable info and opinions to share. Their thoughts are not your truth, you get to choose what you accept as true (or false). At the end of the day, you live here (in your body). Make a promise to yourself to never betray your truth, what is right for you. I believe you. You can heal, YES you.
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