Do we really ever get better?

yes you do!

Wisco woman the thing is on top of being absolutely miserable in our bodies, we also have to then do the work oursleves to find the pieces of the puzzle. Because our conditions are so unique, I find that most doctors dont help at all- but the ones that do usually give me one piece of the puzzle. At this point I am just going- have to- to the next and the next doctor or step or whatever I have to do to get the pieces of my body into some kind of comfort ( which it is currently in a constant state of discomfort). But I have another person I am seeing, and one I saw last week- and I research and ask 10 million questions- I think we have to do that kind of work for ourselves- even though we can barely function.

jb 1994 exactly it is very difficult

"Do we really ever get better?"

Yes, maybe to different degrees though.

I looked at it like the like the longest endurance event in my life and (on the planet that we know of).

I finished (with some injuries and scars though), just like before, but way more difficult.

Entry fee was free, but had to pay a LOT along the way at each stage start.

Wisco woman- for me the worst symptom I have is there feels like something is constantly squeezing my heart lungs chest and diaphragm, and bloating pressure in my abdomen- and I feel like I cant breathe from it. And so far I have not been able to figure it out other than possibly babesia, which I just started herbs for 5 days ago. So still totally in the symptoms. I had a hiatal hernia pulled down last week which relieved a different layer of heart and chest breathing issues- but it may have come up some, am seeing someone else to help with that again soon. But there still remains this squeezing feeling. So I have a little hope that the herbals for babesia will eventually treat it- and too soon to tell. But I also have this feeling of I am still here in these symptoms and my body cannot ever get comfortable from it. I see a chiropractor tomorrow who is a top field guy- I am travelling to a city 3 hours from me to see him- to clarify if there is any other physical diagnoses he can help me with, apparently he is good at diagnosing the body in general. So that is me in this moment.
Would you like to describe the specifc things you are struggling with and any specifics so maybe people could offer you ideas?

I can say beyond a shadow of doubt, a resounding YES. People DO get better. Much better. Cured and then some. I can say this with 100% confidence because I am one of those people. I have the greatest personal proof of all. Firsthand personal experience.

I became incredibly sick in late summer 2015. I was walking my dog deep in the woods off trail several times a week in peak tick season. Over that summer I probably sustained over 100 tick bites and this is no exaggeration. 99% of them were harmless, and I never gave it any thought because I was told there is no Lyme in my region and I was completely oblivious to the risks and uneducated about coinfections or testing pitfalls or anything else about this mess that is Lyme in modern times. However, when I did lose my health very suddenly, i immediately made the connection and knew right away my condition was caused by tick bites. There was never any doubt in my mind.
Before i got sick I was in incredible physical shape. I would go to the gym 3-4x per week doing high intensity heavy workouts for 3-4 hours at a time. I would also walk 5-7 miles a day. I biked, hiked, swam and traveled extensively. Then all that came to a very sudden abrupt halt.

I had a myriad of troubling symptoms, most of which I really dont even remember and have little desire to revisit even mentally. My most noticible symptoms were neurological. Cognitive decline, vision problems, bizarre highly detailed dreams that were more real and detailed than my actual waking life. Severe personality and thinking changes. Muscle spasms, fasciculations, coordination problems, severe weakness. I had severe mental problems and would have likely been diagnosed with a mental disorder had I seen a psychiatrist. Luckily I did not. I felt as if my entire identity had been suddenly ripped away, like I had frontal labotomy. I had gastric motility issues, loss of appetite. My decline was quite rapid, and within just a few months i was a shell of my former self at just 33 years old. But I also had other issues. High resting pulse rate and palpitations, severe debilitating fatigue even after long sleep. Physical nervousness, shakiness, and piercing physical anxiety like i never had in my life. I also had some troubling lab results and documented liver problems.Sky high EBV titers, Very high liver enzyme levels, very high ferritin and a liver sonogram that showed perforations in the liver. None of my symptoms really screamed Lyme. I had little or no joint pain. Most doctors and others in the medical establishment, and perhaps even a few reading this may say I had no evidence of Lyme, but when my dog started showing symptoms and tested positve for Lyme, Rocky Mountain Spotted Fever,and Ehrlichia I knew 100% beyond any shred of doubt that both of our problems were caused by tick bites. More than that, despite what "medical science" was insisting about Lyme I simply knew my body quite well and knew something was seriously wrong. The only way I could describe my condition to others, was that I felt as if my body was shutting down.

So after being rejected and denigrated by traditional doctors I quickly went into the care of a local LLMD in September 2015. She put me on doxy ceftin and tinidizole. I had never taken antibiotics in my life. I took those 3 drugs for about 3 months and saw no improvement so i just abruptly stopped all treatment. I was afraid of drug side effects and since I was relatively new to being sick, and completely new to antibiotics, I couldnt tell in my mind what was the symptoms of my infection, and what was drug side effects.

Over the next 2 years I exhaustively researched everything i could find regarding Lyme and tick bites. I would spend hours and hours, long in to the night reading. I literally clicked on every single google result for "chronic lyme treatment" Hundreds of websites. Many of those hours were spent right here at Healing Well, meticulously combing through years of archives to find the information I wanted, and find evidence for hope. I scoured highly technical medical journal entries and research sites. As you all know, much of the information out there can be contradictory. This eventually led to a lot of frustration and Lyme and ticks and thinking about them completely consumed my life.

I simply couldnt do it anymore. Even spending most of my time in the days and nights researching, I still never found any definitive answers.I was conducting my own crude form of social research looking closely at anecdotal reports and discussion board posts and comment sections on articles about Lyme.. I felt this is a problem that other humans have encountered, so there MUST be a solution. I was looking for a perfect healing protocol, a magic bullet. I never found it. In fact it just made me more confused, so eventually I just stopped thinking about it and hoped it would all just go away on its own. Maybe the CDC and IDSA were right. Maybe it was just "post treatment Lyme disorder" and it would just magically go away in time.

Sebreg put it very well in a post above "and maybe a bit of a break from having to think a lot about it might help, then you can catch your breath and reexamine strategies if you are feeling more up to it (the constant effort of trying to get better is psychologically demanding and can end up burning us out in its own ways)" This is so true and describes exactly where I was. completely burnt out and done. Paralysis by analysis. Hundreds of thoughts, ideas, and options, but NO ACTION. i kept planning treatment regimens, and deciding on a start date, but the day would come and pass with no action from me. I was expecting a very long 1-2 year treatment, and it just seemed too daunting for me.

I just tried to resign myself to my crappy existence. I tried to live as best I could being taunted by memories of my former self and my former abilities.

Then something happened in mid april of this year. Im still not exactly sure what, but I snapped. I got extremely angry and frustrated and said "no more". I was fed up. I channeled this anger into action. I LOST FEAR. I reached a point where I said to myself 'doubt and side effects and toxicity of drugs be darned, I am going to treat this or die trying'. Life was no longer gratifying and I knew my then current existence was simply unsustainable. So I made a plan based on the knowledge I had gained over the years and set out to attempt it. (I outline my entire treatment strategy in another post titled 'log's treatment log' you may be able to see by clicking on my username if interested)

I started with doxycycline, and after years of no treatment, I noticed some very slight improvement, but nothing major. Then I added Japanese knotweed, cats claw, otoba bark, kudzu, biocidin, Gou Tang, and then oral Ceftin. I also took and still take numerous vitamins and supplemts. coq10, b vitamins, vitamind d, garlic and stabilized allicin, fish flax and hemp oil, vit E, concentrated CBD oil, bone broth, LOTS of collogen, glutathione, I also did a short course of collodial silver and zeolite.

I settled in for what I thought would be a long and grueling treatment and didnt expect to see any change in the near future.

But God had other plans for me. After noticing some minor changes in the first week or 2, a miracle occurred. On just day 20 of treatment, I woke up, and it was an absolute breakthrough and it was like switch went off. A ray of light hit me and all the darkness I had experienced for the better part of 4 years dispersed almost instantly, and it felt like all my sickness was gone. I felt happy again. I felt excited again. I felt a raw energy I thought I would never feel again. Almost all of my symptoms melted away overnight. The changes were so drastic and so immediate that it was kind of scary in itself. I thought this cant be. I am supposed to treat for months and months and still maybe not have any progress. This breakthrough led to an enormous amount of confidence and positive momentum, and I just ran with it and havent looked back. I detail my recovery in "logs treatment Log" post from a few months back.

I felt a fire to return to the gym, and I am already in nearly better shape than I was before I got sick in just 3 months of being back in the gym, after 4 years of very little exercise. I am back to 4 hour strenuous workouts pushing myself to my absolute physical limits with no fear or hesitation. I hadnt traveled in 4 years, and I just went on a 4 week "victory over lyme road trip" to colorado with my dog whom I also healed with herbs and drugs, where we hiked daily and even scaled a 14,000 ft mountain and kayaked level 4 rapids. Things i couldnt even have imagined doing just 4 months prior. I fully enjoy life with no limitation whatsoever.

So how did I do it? More than anything for me it was a shift in my mental attitude. My catalyst was anger. Anger led to action. Action led to results. Results led to confidence, empowerment and positive momentum like an avalanche rolling down a hill. I am in awe of the power of God to turn things around in an instant. After suffering for 4 years, I didnt see how it was possible to get out. The situation looked so hopeless for so long. But things I thought impossible are now my reality. At the snap of his finger, at his command, great things, amazing things that we simply cannot comprehend come into being instantly on his timeframe, not man's. I have had to return to church and find some way to thank him to express my gratitude and praise.

Through him I can DO ALL THINGS. We are made in his image and if we put on his armor and work to our best potential, with him, nothing or no one can stop us. He gave us DOMINION OVER ALL THINGS. This means the beasts of the field and the insects that crawl on the ground, and yes, even the bacteria and parasites we cant see. All forms of life - The lion, the bear, the tick and its diseases can still kill us, and we must respect that threat. But he has given us the tools to exert dominion over them. We just have to find those tools and put them to our use. He made these tools for the use of man.

When my miracle came, I wasnt a praying person. In fact I was frustrated with God and had ended my relationship with him. I didnt pray. So I cant say my prayers were answered. I ignored God and He still shined his blessings upon me. Im no one special. He can bless all of us in an instant. He didnt choose to bless me because I am some great person.

SOme of you may be athiest or agnostic, and dont believe the God talk, but this is my truth and I intend to share it with the people who are just like I was for four years. Desperate, alone searching for answers. Lost in confusion and uncertainty. Satan is the deceiver. He thrives on confusion. Lyme is confusion. Lyme and the 'science' surrounding it are products of modern deception. Tools of babylon and satan. There are light and dark forces in the universe. To me this is undeniable.

I'm not telling you to fall on your knees and give your life to Christ and proclaim yourself saved to have miracle healing. What I am telling you is that you were created in the image of God, and through him all things are possible. Im not telling you to directly pray for healing or believe a certain denomination or religion. I am testifying to his power and trying to share the confidence I got when I found a way to tap into the HIM that was in me, and be more conscious of his blessings. He has given YOU dominion over all things. You have to use your rational mind to find the tools to exert that dominion.

He helps those who help themselves. I believe he helped me with just minimal effort, not because I am special or a saint, but because like you, I have the power of HIM in me.

You must heal yourself. God has provided the tools for you to do it. For a long time i hoped for a super doctor or a specialist that could figure me out and heal me. Your healing must come from you. I ordered all my drugs online from india. No prescriptions. No medical oversight of any kind. I did it all alone. Dr Rawls has a good quote in his book unlocking lyme. He says so often when we face difficult challenges, we have a fear of failure. So to protect ourselves from that fear of failure, we outsource the job to someone else. That way if failure occurs we arent responsible. The medical field filed us. The doctor failed us. So we then throw up our hands and say, if the experts failed, what chance do I have? This way when failure happens we are shielded from it. From the blame, from the accountability. We say its too hard just let someone else do it. Outsource it. YOU MUST TAKE CONTROL OF YOUR OWN HEALTH AND HEALING. NO ONE ELSE CAN DO IT. HEALING COMES FROM WITHIN. STOP LOOKING FOR IT FROM WITHOUT. Yes you will need medicines and herbs that are without, those are the tools you use to heal. But the truth and the knowledge of the means of healing are within YOU.

Stop the confusion and deception of lab results and chasing your tail and 'listening to the experts' The experts have knowledge and experience. You can learn from them whats best for you, But they dont know YOU. All they can really do is guess and trial and error. You can do that yourself. You have to find your own truth for health.

I have spent close to $10000 and gone into credit card debt. But I can tell you, I'd rather be healthy with 1 million in debt than sick and debt free.

You have to find a catalyst to shift your mental attitude. Thats where healing starts. You have to find some positive momentum and run with it. This is easier said than done. If the catalyst never comes, the status quo remains and nothing changes. Lyme takes away your will to fight, but you have to find a way to get into a no holds barred viscous fighting stance. Unleash the warrior in you. You HAVE TO FIGHT. You have to KILL and CONQUER. My catalyst was raw anger. I believe all people need to get angry to a certain extent to create the change necessary to overcome this. This is where it started for me.

You have to overcome fear and uncertainty. Fear is your greatest obstacle to healing. You have to reach a point where you feel you have nothing to lose and everything to gain. Uncertainty creates fear. Lyme is the definition of uncertainty when it comes to health. You have to block out all uncertainty and focus. Take it back to the very basics and focus on what you are certain of and dont worry about what you cannot know.

You have to stop dwelling in negativity. Healing Well and sites like it are a double edged sword. While they can inform and educate, they can also create a condition of extreme and contagious negativity. People who heal DONT COME BACK HERE. They live their lives and try to remove themselves from this disease and much as possible. For me and others, this was the darkest period of our lives and we want to destroy and forget everything associated with it.

Also we tend to think. "I know how I healed, but so many are dealing with so many problems and variables like mold and sibo and parasites and yeast or whatver, maybe its not Lyme. I dont want to confuse them." So people who healed simply have a tendency to leave others to draw their own conclusions so as not to give bad advice. I beleive when you gain control of your overall health, all the other 'side stuff' comes back in line. For example my EBV titers went down after getting healthier, more active and back in the gym So did my Ferritin. I could have easily got distractd and focused on these labs trying to address them individually but as my overall health improvedl so did my 'side stuff' The way I look at it is that this is a Lyme site. I know I had chronic lyme and healed it. So I want to share my process. But to be honest, I dont have the same desire to share as much as i had a strong desire to heal, so I wont post here often. Thats just the nature of desperation and deliverance in human effort. This is just one reason you dont SEE success stories. Here I am taking 2 hours out of my busy to write this. Why? to share i guess. Before I had unlimited hours to research. its just different psychology and motivations. My motivations to participate in healing well are no where near as strong as they were when I was sick.

You can do this. It can absolutely be done and is done quite frequently.

Now i have only been healed for four months, so some may say im due for a relapse. But I dont even have that thought. I dont have doubt or fear it will come back. I will continue to treat with herbs and some drugs up to a year just to be prudent, but the changes i have seen have me declaring victory over Lyme. I have trampled it and stomped on its throat, and now my overall health and physical activity and good diet will keep it away.

So is it possible? Not only is it possible, it is my reality. You have to take a very deep and possibly painful look at YOURSELF in the mirror. Stop reminding yourself what you cant do. Focus on what you can do. Stop hoping for sympathy and having a woe is me attitude. It may be bad, but someone else has it 10x worse. Get angry. Get motivated. Unleash the merciless vicious killer inside of you and attack with all you have. And when the enemy is down, you kick him again and again. When the enemy is stifled by a punch to the stomach and out of breath, put him in a headlock cover his mouth and suffocate him. When he stops breathing, cut his head off. Thats how you have to think. No mercy. No surrender. You are fighting for your life and your heath and your future. Now get to work with a renewed confidence that it can be done because now you cant say you dont know if it can be done or not. I am walking talking living proof that it can and will. Now get back in the fight. Theres a war going on. You have some territory to retake from the occupying enemy invaders. This is your land. You just have to rally your troops, find the route of attack and choose the right weapon to kill with. You can do it. Anyone CAN DO IT.

Thanks for all the info and inspiration logmoss. I am glad you are doing well and thanks for taking the time to share your story.

I sure hope we can get better. Or I have disillusioned myself for 8 years. I have days/weeks/months where I feel just like you. Things just aren't happening like I want them to. Just this summer, I felt like I was SO close to remission. Right as I thought we were going in the right direction, Babesia comes in and knocks the feet out from under me. Ended up in the hospital for four days. Still haven't recovered. It's incredibly disheartening when you feel like you might be getting better, and then BAM out of nowhere something else happens. I'm right there with you today. We just have to keep holding onto hope. Those people who can hold onto the glimmer of hope inside of them are those who are going to fair the best. If you give up, you're not going to have a fighting chance. I'm not an optimist. I'm a realist. But I do try to hold onto some sliver of hope that things can improve. I have seen improvement in my five years of treating. We're not where we used to be. Imagine what more improvement I can make in five more years. UGHHHH. If only it didn't take that long. Hang in there. You're not alone!

sebreg said...
It did help me to scour the net and read stories of people who got better, people who were brutally ill and yet they eventually found a way. Really helped me psychologically to know it was possible, because there were long periods I didn't know if it actually was possible.

Might you still have access and be willing to share any of these stories? Been pushing through a mental slump lately and could use a good recovery story!

Honestly I don't think we ever do. I'll just be blunt. With age comes breaking down of tissues and organs already. These have already been damaged with Lyme bacteria. Most of us never knew "good" to begin with because the disease hit us early in life and we never reached our true potential, so returning to that normal would be the best we could hope for and even then as I said age already degrades our bodies so that's a long shot. Making it a goal to be completely better is pretty much out of the question and setting the bar too high, it will inevitably lead to further discouragement and we all know mentality is half the battle of recovery. Just enjoy what you can while you can and accept that you're simply disabled to some further degree than most of the population.

jb1994 said...
Honestly I don't think we ever do. I'll just be blunt. With age comes breaking down of tissues and organs already. These have already been damaged with Lyme bacteria. Most of us never knew "good" to begin with because the disease hit us early in life and we never reached our true potential, so returning to that normal would be the best we could hope for and even then as I said age already degrades our bodies so that's a long shot. Making it a goal to be completely better is pretty much out of the question and setting the bar too high, it will inevitably lead to further discouragement and we all know mentality is half the battle of recovery. Just enjoy what you can while you can and accept that you're simply disabled to some further degree than most of the population.

I’m hoping to be symptom free - maybe it won’t happen... time will tell.
If I had given up two years ago, I wouldn’t have made the gains that I’ve sustained in that time.

I am older so I doubt I’ll be able to do everything at the same caliber - ie tennis... running....biking... but that’s ok as aging does that to us anyway.

Sometimes I feel SO close and optimistic and other times not so much.

My husband was treated for Chronic Lyme and Bartonella for seven months, and he recently got his walking papers from his Lyme doctor. He's feeling great.

I've been treated for Lyme and Bart for sixteen months, and I'm feeling a little better, but I'm not there yet. I'm hoping that one day, I'll be well. My husband's healing gives me hope.

NotQuiteAntonio said...
Sometimes, yeah, and it's partially dependent on what you'd consider getting "better". Do you mean improving to a point where you can say "well, I'm not as sick as I was, and that's pretty nice" or do you mean "I'm totally healthy now and Lyme disease and everything that went along with it is a distant memory"?

I think most people are likely to experience the former, rather than the latter, because, depending on how long you've been ill, it's a big bite to swallow, especially if you're a younger individual. What, with the obligations to make something of yourself, start a family, provide for your loved ones, save for retirement, or whatever.

For example, take me, I got infected when I was 16 years old, not experiencing the worst of it until I was 19, then 21 before I discovered what was wrong with me. I hung around with my family for that period of time, up until I was about 24, trying treatments X, Y, and Z, before I realized that life wasn't going to wait for me to get better.

I reenrolled in college, graduated, got a job, moved out, etc. Beyond that, I started doing things that Lyme brain always told me I couldn't. "You're too sick", "you're too slow", you get the picture. Go out into the world, take on responsibilities, do your best to live and grow in spite of the shortcomings, is what I've told myself over the years.

Though, these things take up time, going back to it being more difficult, arguably, in some ways, as someone who's younger. Older people might be more equipped to just put their lives on hold, in a better place financially, kids grown up and out of the house, etc. That's not to say they have it "easier", of course, just that there's a certain pressure to do something with your life when you're younger that older people might have already alleviated (successful career, family, dreams met, the list goes on).

But, maybe that's just my perspective? I've spent a large amount of this post expanding on it, when it's not really the exact message I wanted to convey. The real point is that most people aren't going to get completely better. It's more a game of celebrating the small improvements, constantly working towards more, and remembering to live life outside of this world of many illnesses: Lyme, candida, parasites, adrenal fatigue, etc.

Days come along where you feel like life it's really life, you're not yourself, this isn't your full potential, you can't eat such and such foods because some unidentified organism thrives off of it, in spite of restrictive diets for months to years, probiotics, antifungals, et cetera. Days come along where your gas tank is on E from the moment you roll out of bed. You get angry at people for the little things. You take stuff for granted. You can't remember things that happened a couple weeks ago that others bring up with ease. It's never-ending, really.

But, despite all of that, you've got some achievements, you've made memories, made friends, smiled, laughed, taken on new hobbies, wake up and breathe each new day, with chance to build upon all these things, experience more, get better, healthier, inside and out, and that's cool too.

I don't imagine I'll get to 100%, unless something changes drastically in the world of TBI/dysbiosis/all of these niche things many of us live with, because I don't have one or a combination of - the time, the money, the access. So, I just do my best and pray things don't get worse. If they do, well, I'll try something else, and keep living my life outside of that.

NotQuiteAntonio,

Man it’s good to see you post again! I was thinking about you last week and wondering how you were doing. Glad to hear you are going on with your life in spite of it all. So, you moved out. If I remember right, you had mold exposure where you were living. Have you noticed improvement since moving?