Burned out

27 years of age, and I've been at this for well over a decade. Haven't even begun to live my life yet. Every step I have ever taken to move my life in a forward trajectory has been marred by either disease, or the short/long term consequences of treatments targeting it.

Try to convince me that there is purpose in waking up every day, only to eat the same bland regimented diet, ingest medications, sleep half the day away because I am so ****ing mentally/physically exhausted, maybe attend an appointment, have blood drawn, watch movies, play video games/guitar that I inevitably suck at because my mental acuity/hand eye coordination resembles that of a sloth, and hold onto a naive sense of hope that somehow, maybe this time around, doing everything I know to be right, and following my llmd's advice will catapult me into remission.

I've tried everything besides IV antibiotics, and no matter what I do, lyme disease continues to rebound and beat the piss out of me. Benzo withdrawal certainly doesn't help matters either. I don't care to live like this anymore, but I also have no solution as an addendum to that statement. This purposeless, meaningless existence. It has bled me like a stuck pig. The youthful vitality that used to push me forward to attack these health issues with a heavy handed helping of tact/knowledge absorbed through countless hours of research is gone. I used to understand everything inside and out. Now, I just don't give a ****. The condition of lyme disease in and of itself has done wonders helping me forget every useful bit of information I've ever learned.

I feel like I am sleepwalking through life. I'm awake, going through the motions; but I'm vacant. Far too many times, I have heard doctors and family members feed me lines of bullcrap about how I will eventually meander my way into remission. That I "just need to give it more time." At a certain point, hearing that becomes meaningless. It's drivel. I've heard it over and over and over again, and it has never been a statement made with objective clarity. It is always uttered out of an abundance of unfounded hope. My suffering never factors into the equation either. "Oh, well, you look pretty good, so it can't be that bad, right?"

My occupation may as well be listed as "human guinea pig." As far as I can tell, it's my greatest contribution to this world. A canvas for doctors operating in the grey areas of the medical profession to make mistakes with. If there's any meaning I can derive from this dreary, tedious, unrewarding journey, it's that someday, someone else will benefit from the countless **** ups I've witnessed by a healthcare system that seems to be entirely enamored with leeching every penny they possibly can out of the patients that rely on it at the expense of any sort of reasonable risk/benefit analysis. Alternative docs aren't excluded from that pool of degeneracy either. Disease is a gift that keeps on giving to these parasites.

So sorry you are suffering. I’d recommending detoxing a ton. I prefer natural treatments over IV antibiotics. Try to enjoy the little things and hang in there.

disillusioned404 said...
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I've tried everything besides IV antibiotics, and no matter what I do, lyme disease continues to rebound and beat the piss out of me. Benzo withdrawal certainly doesn't help matters either. I don't care to live like this anymore, but I also have no solution as an addendum to that statement. This purposeless, meaningless existence.

I feel like I am sleepwalking through life.

disillusioned404:

1. I read back through your posts to see what you've tried and treated. I am going to strongly recommend that you have your doctor prescribe LDN (low-dose Naltrexone). I didn't see you post that you've tried it, so I don't know if you have. This has been a life-changing drug for me and I am only on 1.5mg. Let me know if you want more info. I had severe depression my entire life and the LDN got rid of it. It is not an anti-depressant, it helps heal the body.

2. GET. OFF. BENZOS. You sound so depressed, and I have been there. The benzos are not helping and will make you worse.

3. Change your screen name. You might think it sounds meaningless, but I hear so much despair, cynicism, depression and anger in your posts. I HAVE BEEN THERE. This stupid disease has completely changed who I am as a person. Little things like gratitude journals and not dwelling in negativity *absolutely matter.* This is why people recommend DNRS. The brain is plastic, but you absolutely have to be open to change.

4. Did you treat Bartonella? I didn't see that in your posts, but tons of your symptoms sound like Bart, not just Lyme. The OCD, the anxiety -- did you treat Bart *enough* and long enough? Did you try herbs long-term for Bart?

my background: I have had Lyme and Bartonella my entire life; I recently found out I got bit by ticks as a baby in 1980. I also have c-ptsd from severe childhood trauma I endured, some of which I did not even know about because it was buried until I started treating the Lyme. I spent decades being suicidal, cutting myself, with an eating disorder, having panic attacks. Decide if you want to live and get better, or if you want to die. Make a choice and move forward. That's the best advice I can offer.

Your post is obviously not just about tick infection, but life itself. When were young we tend to brush off what older people say, even though we know they have lived and endured and usually have advice worth offering. Every generation has probably done this.

So here's the deal, your literally sick of this for a long time, but many other have been there too. Everyone has a more major area of their illness or life struggle thats a little more elevated than others experience. We have to deal with that , adapt and endure. That might mean some major "time outs" too. Many here honestly thought they were near death. It will pass. Concentrate on you good qualities to help you prevail.

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I'm almost a "boomer" and I really dont know what its like to have an almost perfectly working body. I dont. When I was a child I had a lot of body pain and brain fog, lived near woods and had ticks at an early age. Some years were better than others and I actually excelled at a specialty sport that I learned to adapt my handicap to- my style was all wrong but I made it work. I lived in different degrees of pain and fatigue my whole five decades. There certainly were times I felt like giving up., and I did give up for a while, figuring I would not wake the next morning. Then that slowly changed in my fourth decade of living. There are things I could not and still cant do, so I dont bother and concentrate what I can do well and what makes my life worth living. Im prob 90% better on my good days, for the last five years. That might be the best i'll ever be, I dont know. You can endure.

Hi disillusioned, I can so relate to how your feeling. Feeling like your in a constant fog and stuck in a continuous cycle with no way out. I’m 29 and have been struggling at around 10 years as well.

I will say when I had bartonella flares all my mood symptoms magnified. I even went into the psych ward for a few days to get stabilized on antidepressants bc I hadn’t found one that worked. I had been having a lot of suicidal thoughts and paranoia. I got out and treated for bartonella and it helped a lot along with the Wellbutrin and anxiety med. It was horrific feeling the hopelessness you are expressing. I’m so sorry for your pain. It feels so unfair to have to fight this strange illness and not have clear answers.

I’ve been feeling that a lot lately feeling a bit numb to everything after having a pretty big relapse. One thing my counselor told me the other night was the importance of having hope. Hope things will improve and hope for a better life etc...have you seen or been seeing counselor or have someone you can confide your feelings in. This is so important if you can get some type of help to improve your mental health.

To me this sounds a lot like bartonella and or depersonalization as some else suggested. If you can focus on one treatment I would focus on that if this is one of your coinfections and or look into trying a different drug for your mood symptoms. It’s not fair that I or you or anyone has to go through this but there are people who heal and this gives me hope. I’ve chosen to believe there is some kind of purpose in the pain I hope you can do this too. ♥️

Enough time with the right treatment can change everything fairly quickly. I almost died of Bartonella endocarditis without knowing it was Lyme. If I hadn't achieved its resolution already it would be hard to feel how it's possible to beat, but it is, even after decades of infection. For now I'm stuck with brain fog too. The will to survive comes from within. You've spent half your life sick as I have. I was first bedridden at 25 and had decades of progressive bouts and partial resolutions. It was severe.
Recovery is like years melting away and it's miraculous to feel young again. It's worth waiting and working for. Rocephin is on my short list because most AB's are not strong enough for big infections, whereas Rocephin is a darling. First I'm trying a few months of Malarone. I wish I knew for sure if this is babs or borellia, but I think it's both, so my plan is to focus on these two gold standard treatments and I feel like I'm finally going to finish off this Lyme. I hope you do too.
If you're open to suggestions, have you tried methylene blue? It's an old school 'silver bullet' that's coming into use again. It was a cure for malaria (babs), syphillis treatment (borellia) and is proven to help heal dementia. I started it because it's supposed to be great at persister Bart infections. It cleared up a recent flare of pain that was settling in systemically. Unfortuanately it's not directly fixing my brain fog. But it's an MAIO, a type of antidepressant, and unlike others, I like it's affect. It brings oxygen into the brain so although I still have the awful blanket of brain fog, I also dream some more, imagine some, I get some relief that equates to an edge of happiness. It takes a strong stomach but is relatively kind on the organs. It's expensive, but infuserveamerica in Fl has it for about $4/pill.
I just wanted to add that I'm on month 5 of MB and it IS starting to clear up my brain fog. I have energy ability and interest to start doing things which I've been lacking for 6 years now. Hope you find your magic bullet.

Post Edited (SC Gal) : 4/23/2021 2:11:04 PM (GMT-6)