Posted 5/18/2019 5:42 PM (GMT -6)
I contracted some form of tick borne illness after multiple tick bites in summer 2015. I could never conclusively identify what it is, and all the doctors in my area (Georgia) dismissed the idea of Lyme or any other tick borne disease saying "we dont have those here." and my only positive test was for presumptive lyme through Igenex.
My dog got sick too, and unlike me, he tested positive for lyme, rocky mountian spotted fever, ehrlichia and babesia. So despite what the so-called specialists told me, "we DO have those here." I knew beyond any doubt I had some tick-borne infection despite my negative tests.
I saw a functional med doc who also treats lyme. In GA,there arent really any Lyme specialists that focus on Lyme specifically and only lyme, as there are up north. I took doxy , ceftin and very low dose tinidazole for about 3 months, with very little or no improvement and then abruptly stopped all treatment. I had never taken any form of antibiotics in my life, and I wasnt sure if my symptoms were from an infection, or from drug side effects.
For the next 2 and a half years I read all I could find on the internet about lyme and tick borne diseases and their treatments. Literally staying up all night reading everything from personal anecdotal testimonials on comments sections and message boards, to very complex in depth scientific biological and medical studies. I think one night I clicked on every single result google provided me for "chronic lyme treatment" Literally any information i could get my hands on. So much information, that I was basically paralyzed into indecision by information overload, and a complete lack of any true consensus. This is all I did. At a certain point after over 2 years, the constant research and obsessing about the disease every waking hour( and in my dreams as well) began to wear on me. I felt the constant focus itself may be contributing to some aspects my health, so I just stopped researching and just tried to ignore the problem and block it out as best I could. I did this another full year.
This was a terrible approach, and I continued to get worse. I dont really know why I did this. I might go into more detail about this on another post, But basically I think what i was looking for was certainty. I knew 100% I had some type of tickborne infection (unlike some who arent even aware what they may have at all, they dont remember a bite) I wanted to find a perfect approach, a perfect drug combo, a proven protocol, and with this disease there just arent any. You cant even definitively diagnose it much less definitively treat it.
I have a very analytical mind, and just like when a car breaks down, I felt there had to be a straightforward analytical scientific solution to my problem. I was very skeptical of what i considered "alternative approaches" With Lyme there's the mainstream medical approach (antibiotics for thirty days and thats it) and then theres EVERYTHING ELSE. I lumped all non conventional approaches into this one category. Everything from long term antibiotics, to rife, to herbs to bio magnetics, to heat therapy, bee venom. I remember thinking to myself "yeah right, years long high doses of multiple advanced synthetic antibiotics arent healing people, but some herbal tincture will?"
This was a mistake, as some of these approaches have a lot of merit, and I allowed the least credible biologically implausible methods to discredit all forms of alternative therapy in my mind. Sort a guilt by association. This environment created a lot of doubt and uncertainty in my mind. I wanted to stick to "proven" science as much as possible. (This experience has taught me a lot about science in general. What is "proven" isnt necessarily so, and what is "unproven" may actually have even greater merit. Absence of evidence is not evidence of absence) .
Eventhough I knew very early on that the official stances on these disease put forth by the IDSA and the CDC were not only wrong, but seemed to be purposely inaccurate and misleading, I still had just a shred of doubt and believed them that it may be possibly PTLDS (post-treatment lyme disease syndrome) and the symptoms would just magically go away on their own. Part of me held out a shred of faith in the public health authorities stances on lyme. I wanted to trust these authorities to do what they are tasked to do for the American people. The official line on Lyme is repeated so often by so many different sources, that at a certain point I guess there was a very small part of me that wanted to believe it, eventhough I had a lot of outside evidence and personal conviction it was wrong. The one thing they seem to want to hammer into peoples heads through repetition is that "further treatment is not helpful and just makes things worse."
I had never had any health problems to speak of in my life, and going from very healthy and active to extremely ill in such a short time with frightening neuro, cardiac and psychiatric symptoms and bad lab values was uncharted waters for me, and I was afraid with my luck of having caught this disease in the first place, I may just make it much worse trying to treat it. I looked at every possible side effect or negative outcome of every treatment method and just assumed they would all happen to me if I tried treatment.
I read of many other people's treatment experiences online, most of them overwhelmingly negative. As many of you know, most of what makes it into message boards, blogs and comments sections about these diseases are negative treatment outcomes. I figured if these people are trying all these methods, fundraising and begging for help on gofundme, and treating for years without getting better, then whats the point? What chance do I have of getting better if so many other people with much more resources, time and motivation than me have already failed? The idea of treating anything for a year or more, as was suggested by many sources, just seemed way too daunting to me. (if only I had started right then, I may have been done 3 times over)
This disease is completely destabilizing. It destabilized so many different facets of my health and well-being. Physical, mental, emotional, spiritual. It rewired my brain to the point where I had no interest in family, friends, food, music, travel, exercise, or any of the hobbies or interests I had before. Even tv shows and general interests that I had before were just gone. My whole being, and concepts and cultures and curiosities I had related to that made my identity just disappeared, and It was like part of my brain was removed, as if I had a labotomy. It's very difficult to explain the changes it created in my mind body and soul. When people are in an unfamiliar crisis like this, sometimes the natural response is to just go into pure instinctual defense mode, curl into a ball, cover your head, hope you stop getting kicked, and just vaguely hope things get better.
Eventually, I got mad. Anger motivated me and I got tired of my nearly non existant quality of life. After 3 years of no treatment whatsoever, my symptoms became undeniable and began to impact my daily life to the point I couldnt tolerate it or rationalize it or dismiss it any longer. I also reached a point of feeling like I really had nothing to lose. As extreme as it sounds, i reached a point where I felt like even if treatment kills me, so be it. I knew that my current state of health (physically, mentally, emotionally spiritually) was simply unsustainable. I no longer had any fear left, and i dismissed any uncertainty. All I was certain of was that ANYTHING was better than the status quo.
So after that long intro to put things into some perspective and context, that finally brings me to the point of this post.
I started treatment on April 19, and...
GREAT THINGS ARE HAPPENING I DIDNT EXPECT
I dont even know where to begin or how to put this into words.
The positive changes in such a short period of time are simply amazing to me. I didnt think it was possible to have such a drastic turnaround in less than 1 month.
I really credit Buhner's book healing Lyme for giving me the motivation and the information to treat. I cant say enough good things about it. I heard so many people recommend this book, and I just dismissed it. I had no confidence that some sticks and twigs could get me better when I was so heavily and chronically sick in so many of my bodily systems. I had no confidence in a 'herbalist' and i thought of herbalism as a bunch of superstitious mumbo jumbo. Buhner does an amazing job of describing the exact scientific and metabloic pathways in which these herbs work. It is perhaps one of the most comprehensive documentations of herbal medicine and its mechanisms ever written. For an analytical scientific thinker like me, this one book was a Godsend and it really helped to bridge the gap between science and so called natural approaches. He also does an excellent job of bilogically profiling the disease and how it acts on the human body in a way I have never seen. He really elucidates a lot of the true symptomology and pathology of this disease extremely accurately and thoroughly addresses the symptoms mainstream medicine has dismissed as non -specific. All of his assertions are extremely well documented and scientifically supported. If you even think you may have lyme and you dont have this book, you need to- GET THIS BOOK AND READ IT.
All I did was start taking a few buhner herbs, some other supportive supplements and doxy- First 200mg /day then a week later 400/day.
With just doxy, japanese knotweed tincture, teasel root tincture, half doses of cats claw capsules, andrographis capsules and grapefruit seed extract capsules, small doses of oregano oil, olive leaf extract and another liquid herbal supplement called biocidin, I saw a phenomenally positive turnaround. So much so it was almost scary.
I cant begin to describe how much better I feel. All of my improvements are very tangible and noticeable to me. They arent all in my head. This is no placebo effect. I had a long 3 years to thoroughly establish a baseline of how I felt with this disease and how it affected me, so the contrast is very recognizable to me. Most of my issues are neuro. I had some physical pain, but not as much as others describe with Lyme. My quality of life has improved so drastically in such a short period time. Its difficult for me to articulate it symptom by symptom, but here are just a few changes I have noticed, some of these occuring within 1 week of starting treatment.
-My vision has improved drastically- I had developed terrible blurry vision beyond five feet or so (nearsightedness) I can now read signs and subtitles on the tv at distances that I havent been able to read for well over a year.
-My circulation is so much better. My limbs dont 'fall asleep' and tingle like they did, I have more color in my face, and people tell me I look a lot healthier. I feel an overall sense of improved vitality
- My cognitive abilities are returning- I can remember names and places again. I can hold conscious internal dialogue again without losing my train of thought. I can concentrate and focus so much better.
-My energy levels are improving. I can breath better, I can walk upstairs with less muscle fatigue, I sleep better and wake way more refreshed without feeling like I have a massive tequila hangover and whole body flu like aches (this had been a daily occurance for well over a year), my hair has stopped coming out in clumps every time I take a shower, foot pain has reduced, constant heart palpitations and high pulse rate reduced, my sense of touch and balance is returning, The constant throbbing electric buzzing in my body has subsided, I have improved grip strength and hand/eye coordination, and fine motor skills, I can grip doorknobs, cutlery and my car steering wheel much better than I could before. I can hold small objects again without shaking. Occasional fine tremors in my hands are gone. I had terrible constant heartburn before treatment, so much so it would wake me at night. I thought doxy would make this worse, but I have had almost zero heartburn since beginning treatment.
These are just some of the things I have noticed. There are others i didnt notice or failed to mention here. I dont want to overstate it, but after just accepting these limitations as normal for so long, its almost like having superpowers to me.
Another thing thats been amazing to me is how well I have tolerated treatment. I feared side effects and herxes so much. Thank God, I dont know what a herx feels like, and i dont want to know. Buhner says that some use herx level as an indication of treatment effectiveness, but that this isnt always accurate. He says only about 30% of people get herxes, most dont, and if you dont, dont feel like you arent treating effectively. Just count your blessings that you dont herx, which I am doing.
But for me, some of the most fundamental and appreciated changes are mental, emotional, and psychological. In just one month, I am starting to get my very identity back.I am feeling emotions again. I was completely emotionally numb from this disease. I felt no joy or sadness. People close to me have died in the past four years and I couldnt even feel it. For the first time in 4 years, I can feel again. I feel human again. I have gotten over the fear and uncertainty of this disease. I find myself taking interest in the things that interested me 4 years ago, and had for most of my life before lyme, that I had just come to write off as forever dead in me.
Before I got sick, I went to the gym 3 hours 4 times a week. Throughout this disease I have barely drug myself in for once a week for 30 minutes of very light cardio. I now have the desire to work out again. I enjoy thinking and exploring ideas and cultures and places I used to enjoy. I havent been on vacation in 4 years. I am planning vacations and hiking trips again. I enjoy my music again. For the first time in 4 years i picked up my ipod and listened to my old playlists and loved every minute of it. I havent enjoyed music in 4 years and this was such a big part of my identity. I rode around some of the streets and neighborhoods I havent had any desire to go back to since i have been sick. I am talking to friends I havent talked to since I had been sick. It has all been so incredibly therapeutic for me.
The problem was my desire and motivation to revisit these things was gone, but with just minimal treatment this desire has returned for the first time in 4 years. It is truly miraculous for me. Its like walking into an attic and looking at pictures and relics you havent looked at for four years "i forgot this was here".It's like blowing four years of dust off my very life and my very identity and picking up closer to where I was before. Its amazing. I thought all this was gone forever.
This isnt ALL psychological though. Before, my symptoms were so bad that every thing I did and saw was filtered through the perspective of this disease and how I used to be before I got sick, and what I would do in a given situation if I wasnt sick. My symptoms were so constant and so strong that they pervaded my every moment, I was consciously focusing on the disease and my physical symptoms in some way at almost all times. Now with just minimal treatment, I have enough breathing room to put the disease and the symptoms out of my immediate notice.
Overall, I just have an enormously improved sense of overall well being. I feel at peace for the first time in four years. the constant sense of impending doom and stress has subsided, and I have feelings of hope and optimism and confidence I thought I would never feel again.
This is an exceptionally long post, so i do want to wrap it up. I dont want to overstate my gains. I dont want to get too high and declare victory. I have a LONG way to go. But I'm seeing undeniable progress in a very short time frame. For the first time in course of this disease I have turned a corner. For the first time I have won a series of battles and for the first time I truly believe I can win. Not that i am just psyching myself into believing I can win, but truly feeling in my heart I can win. Its unexplainably empowering.
I liken it to a boxing match. For 4 long years tick diseases had me backed into a corner on the ropes. Just holding up my guard and trying to dodge punches and just getting wailed on without throwing a single punch back taking enormous damage in the process. For the first time, I have FINALLY punched back. I feel like im hurting the opponent for the first time, even if just a little. I have thrown and landed a strong left hook and stunned the opponent at least temporarily. It feels good to inflict some damage. I'm off the ropes. I have walked him down back into the center of the ring and now its a fair fight and anybody's fight to win once again. I havent knocked him out, but ive inflicted some strong counterpunches. I have a long way to go for the victory, and he's still leading by a lot on the scorecard, but now I have some offensive capabilities instead of just defense I have a fighting chance to win, and newfound confidence and motivation to fight. For the first time I have made effort and seen results from that effort. I threw a punch and it landed.
I remember combing through healing well and wanting so badly to know what treatment and progress looked like. What it felt like. It sounds like such an overused and meaningless cliche, and it sounds unscientific, but it really is true, its different for everyone and you only know it when you feel it. Its impossible to put into words and you have to experience it for yourself firsthand to understand it. I looked desperately for testimonials of progress, but now I have no need for those because i have experienced it first-hand, and this is stronger than any testimonial I could ever read by someone else. Still i hope this can help someone like the old me see what getting better looks like and feels like. I always looked for any positivity and progress in other peoples treatments, so I wanted to post this for people like the old me who look for that. Because I didnt find that, I took this to mean it was impossible but now I know its not. Its very difficult to put lyme treatment progress into words or measure scientifically.
I think this is one of the reasons so many of the scientific studies claim that treatment isnt helpful. The gains are intangible, eventhough they are VERY real. They arent so easliy scientifically measurable, because the symptoms themselves arent really measurable and are scientifically considered "nonspecific" and they differ from person to person. There is no absolute standard, so scientists dismiss it as a placebo effect. I hate to quote a pharmaceutical drug commercial, but there is a commercial for Humira where actors say "I am the body of proof" and this is exactly how I feel. I stand as my very own body of proof as to lyme treatment efficacy.
This is a very personal self-oriented post, and I doubt many will make it to the end here, but if nothing else i just want to document this series of victories for my own purposes, as I havent journaled at all in this disease. I imagine there arent very many people that simply didnt treat for 4 years, if they knew they had tick diseases like I knew. I think most of the difficulties people are facing here on healing well are treatment plateaus and treatment difficulties, but hopefully there are others who may be uncertain about starting treatment who can benefit from this. I wish I could have written this post to my old self 4 years ago. A lot of you already know this, but all this has been such an awakening revelation to me I just wanted to try to share it as best I could put it into words.
For me, tick diseases were terrible, but my own indecision and inaction were my worst enemies. In many ways I was my own worst enemy. I just sat in dysfunction and bathed in it for 4 long years with no action. Waiting for a hero doctor or medical breakthrough to come save me. That was my own stubborn skeptical fault.
I just want to make clear that progress is VERY possible and unexpectedly good things can happen very quickly with treatment. I know not all of you are religious, ( I am really not so much myself to be honest) and I dont want to get too biblical or religious, but theres a bible verse that is heavily resonating with me recently and brings a slight tear to my eye at the moment-
Job 37:5 "At God's command amazing things happen, wonderful things that we can't understand."
GREAT things are happening that I didnt expect, and cant really explain.