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Posted 1/26/2021 11:35 PM (GMT 0)
The OCD, the constant intrusive thoughts. The panic. The brain-fog/paralyzing fear, constantly prodding me to double check, triple check, quadruple check... Just so I will not forget the most basic of responsibilities. The trauma/flashbacks. The inability to live a single day without extensive worry about a multitude of problems running concurrent to the already intrinsic stresses of daily life...

The never ending appointments, blood-work, protocol changes, bodily experimentation, physical pain, gaslighting, lack of sympathy/empathy, platitudes I've heard 1000 times over that only serve to piss me off... The trashy state insurance that barely gets me by. The constant need to explain myself to people who should know better. The ever degrading sense of self esteem. The doctors that treat me as if I have endless stamina, when in reality, I live on a razor's edge; always one inconvenience away from completely losing my mind internally.

The lack of ability to communicate my true emotions in therapy without being institutionalized by some hot off the press college student who thinks they're doing me a favor by entertaining mere thoughts as intentions. I can never truly be honest with anyone, so no matter how many people I talk to, at the end of the day, I am truly alone. It has drained me to such an extent, I feel that all I ever want to do is sleep, but I cannot; because if I did, this house of cards I've delicately maintained for so long would topple. Have to stick to a schedule after all...

My ability to concentrate and achieve any semblance of "flow state" has been annihilated, and that's perhaps the greatest loss, as that fact robs me of any opportunity I would otherwise have to experience a moment of peace. A calm from the storm. I suspect it is related to a form of CPTSD, but no doctor/therapist takes me seriously enough to treat it as such, or at the least, offer sympathies. After all, who could get CPTSD JUST from Lyme, Mold toxicity, MCAS and major benzo withdrawal..... (thick sarcasm)

I can't help but be angry at my family for not listening to me when I actually had the energy; the youthful zeal to hit this with everything I had. Not to mention, GOOD INSURANCE that is now gone. They ruined that by forcing me to work jobs I could barely juggle when I was deathly ill, ignoring my pleas to see specialists/order supplements, and as a result, I turned to substance abuse at the time. Which now haunts me to this day via the collateral damage it caused.

I just want to disappear. Vanish into thin air. And, no, I'm not a threat to myself. I would never take the coward's way out. I'm just venting. Thanks, if you read through all of this. - Anon

Post Edited (disillusioned404) : 1/26/2021 6:46:56 PM (GMT-7)

Posted 1/27/2021 2:26 AM (GMT 0)
Well, you still write pretty good. My brain was way too fried from this to be able to write something like that way back then.

The whole key to this is baby steps even if you don’t have time or money to make baby steps that’s what you Gotta do. Certainly helps to be able to do something that you’re good / you enjoy at even for 5-10 minutes a day. Music ,what little I could do with some of my hobbies and sitting on a boulder at the local creek we’re all my saviors.

All the different herbs I tried were certainly an eye-opener as far as what they can do for temporary mental health. Holy basil, passion flower, lavender , 5/ HTP... GABA, the list goes on.

Proper thyroid levels are also responsible for mental health. I’d say a good 75% Doctors really don’t know what a proper thyroid panel should look like and just do TSH. Low thyroid, hypothyroid creates anxiety just as much as hyper thyroid and I’m really surprised most doctors are not aware of this.
Posted 1/27/2021 4:23 PM (GMT 0)

astroman said...
Well, you still write pretty good. My brain was way too fried from this to be able to write something like that way back then.

The whole key to this is baby steps even if you don’t have time or money to make baby steps that’s what you Gotta do. Certainly helps to be able to do something that you’re good / you enjoy at even for 5-10 minutes a day. Music ,what little I could do with some of my hobbies and sitting on a boulder at the local creek we’re all my saviors.

All the different herbs I tried were certainly an eye-opener as far as what they can do for temporary mental health. Holy basil, passion flower, lavender , 5/ HTP... GABA, the list goes on.

Proper thyroid levels are also responsible for mental health. I’d say a good 75% Doctors really don’t know what a proper thyroid panel should look like and just do TSH. Low thyroid, hypothyroid creates anxiety just as much as hyper thyroid and I’m really surprised most doctors are not aware of this.

Yeah, I am able to moderately well, but that is something that has always come naturally to me. It's not a very good barometer by which to gauge my progression of neurological lyme. Even in the foggiest of mental states, I can still somehow manage to squeeze something coherent out. If I was healed, I would be writing as a profession. I am significantly better at it with a clear head. It's probably the only thing I can truly take any sort of pride in, as my clumsiness tends to sully any other hobby I try to indulge, and only serve to frustrate me.

Though I suppose, I can just try to enjoy something without unrealistic expectations of myself running concurrent to the activity.

I intend on raising the issue of thyroid dysfunction with my doctor next visit. With any luck, he will actually bother to listen this time. I would say hypothyroidism is out of the question, as I cannot gain weight for the life of me, but I also absorb nutrients poorly, so I suppose that's up in the air for now.

As for herbs, they aren't an option for me right now. Especially the ones you mentioned. I am in tolerance withdrawal from a benzodiazepine, and any herbs that even mildly stimulate GABA can have detrimental effects on said tolerance withdrawal. I've taken probably every herb you can think of in the past, but it just isn't feasible right now to pursue that route. Unless of course I want to up my anxiety levels, and feel like a disassociated, anhedonic shell of a person with only a sliver of hope that for some reason, the herbals would work this time to justify it.

But who knows. Maybe I will have to go down that route, being that I'm beginning to think that my respiratory issues are rooted in past mold exposure, and a possible case of untreated Allergic Bronchopulmonary Aspergillosis because of it. Asthma, best case scenario. Survival is paramount after all, and if these feckless western med docs don't do anything about these extraneous problems I'm having, then I may have to treat them myself.

Anyway, thanks for commenting. The loneliness really gets to me, especially these days. I can't remember the last time I had genuine human contact. I haven't so much as hugged anyone in years.
Posted 1/27/2021 4:25 PM (GMT 0)
And forgive me if I seem a bit frustrated. I don't mean to be abrasive. I'm just very tired of all these seemingly endless complications.
Posted 1/27/2021 5:10 PM (GMT 0)
Magnessium glycinate, calms nerves, dont think it does anything to gaba.

If you can exercise (I couldn't for a while) that helps anxiety.

Ive had TSH up to 30 something with t4/t3 under the limit (very hypo), and was very weak but not overweight. I think anxiety burns off fat sometimes, when your whole body is trembling and ill.

Hey,l I figured I was going to die the week after I woke up 80% blind on top of everything else..Then I forced myself to learn what Drs should know, but dont give a da#m about (similar story to others here). Here i am, alive and 90.% well.
Posted 1/27/2021 5:25 PM (GMT 0)

disillusioned404 said...
And forgive me if I seem a bit frustrated. I don't mean to be abrasive. I'm just very tired of all these seemingly endless complications.

The Obstacle Is The Way is a great read, will help you with your frustration. Stoicism has possibly helped me more than anything to deal with this stuff. Marcus Aurelius' Meditations is also worth a read.
Posted 1/27/2021 5:41 PM (GMT 0)
Holy basil , Mucuna Bean and bach flower essence white chestnut all help save my life... welcome : keep at it
Posted 1/27/2021 7:18 PM (GMT 0)

dcd2103 said...

disillusioned404 said...
And forgive me if I seem a bit frustrated. I don't mean to be abrasive. I'm just very tired of all these seemingly endless complications.

The Obstacle Is The Way is a great read, will help you with your frustration. Stoicism has possibly helped me more than anything to deal with this stuff. Marcus Aurelius' Meditations is also worth a read.

Seconded. Philosophy has helped me tremendously in the last few years. It's amazing discovering that the experiences and thoughts I think are unique to myself have already been thought by intelligent people long ago. I think if I was too summarize how philosophy has helped me when i would say "nobody knows what the eff is going on, everything outside of nature is made up, don't prescribe agency to nature..it simply is what it is..learn to accept what you can't control rather than constantly agonize/fight, society is made up...don't take it too seriously, it is not things that disturb us but our judgments about those things, among others.

OP, I feel for you.I have had all the same thoughts as you. Hopefully it's some comfort to know you are not alone in this journey.

I only have one bone to pick with your post. My perspective on suicide has totally changed since I became debilitated with chronic illness. Previously, as a young healthy man I too shared the sentiment of suicide being for weak. To be clear, I am not suicidal, however, I do now understand it. I don't think it's cowardish at all. To me, it's more selfish for those who are not suffering, and at the edge of darkness every day to demand others not find relief. Yes, there is lots of gray here. Many commit suicide at a low point, and on a whim. In general, I think not judging before you have walked in someone's shoes applies here.
Posted 1/27/2021 9:58 PM (GMT 0)
Allow me to clarify Lymie24. I may have flippantly used the term "cowards way out". I don't believe that myself either. It was just emphasis, to ensure that no-one would feel like a hero, try to track down my IP, and report something that didn't need reporting. Again, I am not suicidal. I'm not judging anyone who's done it though. I've had friends in the Lyme community who have followed through, actually.

And yes, stoic philosophy is helpful, but every now and again, I find myself edging to a point where reading the works of Epictetus and the like, just doesn't seem to cut the mustard and venting, however unhelpful in the short term (as it riles me up, and breeds a sense of entitlement in a way), feels prudent. I know those same stoics would scoff at such a lack of control, but I believe they would also acknowledge that learning to be a stoic has its learning curves. Especially when existing in such a profoundly unnatural state. I wonder what they would think of the technology we have available to us today... As well as western medicine, which in my view, is a veritable eugenics program.
Posted 1/27/2021 10:00 PM (GMT 0)

dcd2103 said...

disillusioned404 said...
And forgive me if I seem a bit frustrated. I don't mean to be abrasive. I'm just very tired of all these seemingly endless complications.

The Obstacle Is The Way is a great read, will help you with your frustration. Stoicism has possibly helped me more than anything to deal with this stuff. Marcus Aurelius' Meditations is also worth a read.

I'll give it a read. Thanks for the recommendation.
Posted 1/27/2021 10:11 PM (GMT 0)
I don't know why, but the "quoting" reply option isn't quite working right now.
Posted 1/27/2021 11:50 PM (GMT 0)

disillusioned404 said...
The OCD, the constant intrusive thoughts. The panic. The brain-fog/paralyzing fear, constantly prodding me to double check, triple check, quadruple check... Just so I will not forget the most basic of responsibilities. The trauma/flashbacks. The inability to live a single day without extensive worry about a multitude of problems running concurrent to the already intrinsic stresses of daily life...

The never ending appointments, blood-work, protocol changes, bodily experimentation, physical pain, gaslighting, lack of sympathy/empathy, platitudes I've heard 1000 times over that only serve to piss me off... The trashy state insurance that barely gets me by. The constant need to explain myself to people who should know better. The ever degrading sense of self esteem. The doctors that treat me as if I have endless stamina, when in reality, I live on a razor's edge; always one inconvenience away from completely losing my mind internally.

The lack of ability to communicate my true emotions in therapy without being institutionalized by some hot off the press college student who thinks they're doing me a favor by entertaining mere thoughts as intentions. I can never truly be honest with anyone, so no matter how many people I talk to, at the end of the day, I am truly alone. It has drained me to such an extent, I feel that all I ever want to do is sleep, but I cannot; because if I did, this house of cards I've delicately maintained for so long would topple. Have to stick to a schedule after all...

My ability to concentrate and achieve any semblance of "flow state" has been annihilated, and that's perhaps the greatest loss, as that fact robs me of any opportunity I would otherwise have to experience a moment of peace. A calm from the storm. I suspect it is related to a form of CPTSD, but no doctor/therapist takes me seriously enough to treat it as such, or at the least, offer sympathies. After all, who could get CPTSD JUST from Lyme, Mold toxicity, MCAS and major benzo withdrawal..... (thick sarcasm)

I can't help but be angry at my family for not listening to me when I actually had the energy; the youthful zeal to hit this with everything I had. Not to mention, GOOD INSURANCE that is now gone. They ruined that by forcing me to work jobs I could barely juggle when I was deathly ill, ignoring my pleas to see specialists/order supplements, and as a result, I turned to substance abuse at the time. Which now haunts me to this day via the collateral damage it caused.

I just want to disappear. Vanish into thin air. And, no, I'm not a threat to myself. I would never take the coward's way out. I'm just venting. Thanks, if you read through all of this. - Anon

glad I came across your post. This sounds like me and it literally makes me feel disabled like I'm losing my sanity. I recently found out a misaligned c1/c2 in between the base of the skull and neck can cause this and many more symptoms like autonomic dysfunction. I also have sever ptsd which doubled the symptoms. What area do you live? I just found out today from a chiropractor and didn't even know this could exist. It causes POTS, vertigo, sweating hot flashes, anxiety and depression, ocd multiple intrusive thoughts, constant thinking worrying like me, severe brain fog and memory loss like I have I forget everything and I'm only 28 yrs old pls look into possible c1 c2 misalignment and look at the symptoms. Magnesium does wonders for my ptsd and constant ocd thoughts . It makes me feel calm to where I dont even have any bad or constant thoughts and takes that fearful feeling away, 500 mg made me panic as I'm not used to feeling my muscles so relaxed because of my ptsd. Kind of felt numb and high lol I'd try just 200 mg before bed I tried 1st time during the day, bt everyone is different!
Posted 1/28/2021 5:43 AM (GMT 0)

disillusioned404 said...
I don't know why, but the "quoting" reply option isn't quite working right now.

When there’s more than one quote - it doesn’t work properly.
You have to manually do it.
Posted 1/28/2021 5:47 PM (GMT 0)
Good to know. Thanks Girlie.
Posted 1/28/2021 6:18 PM (GMT 0)
Don't give up disillusioned404.
Posted 1/28/2021 6:40 PM (GMT 0)

disillusioned404 said...
Allow me to clarify Lymie24. I may have flippantly used the term "cowards way out". I don't believe that myself either. It was just emphasis, to ensure that no-one would feel like a hero, try to track down my IP, and report something that didn't need reporting. Again, I am not suicidal. I'm not judging anyone who's done it though. I've had friends in the Lyme community who have followed through, actually.

And yes, stoic philosophy is helpful, but every now and again, I find myself edging to a point where reading the works of Epictetus and the like, just doesn't seem to cut the mustard and venting, however unhelpful in the short term (as it riles me up, and breeds a sense of entitlement in a way), feels prudent. I know those same stoics would scoff at such a lack of control, but I believe they would also acknowledge that learning to be a stoic has its learning curves. Especially when existing in such a profoundly unnatural state. I wonder what they would think of the technology we have available to us today... As well as western medicine, which in my view, is a veritable eugenics program.

Gotcha. I agree, and understand where you are coming from. Philosophy and meditation have helped me cope, but my reality is still my reality in that it sucks pretty darn bad lol.

I don't mean to downplay your situation or feelings. They are totally understandable.Don't give up. I have been at the lowest of the lows when I have broke down crying to my wife absolutely sick of existing. It's possible to improve. My existing state still sucks, but after years of aggressive abx, Disulfiram, lifestyle changes and now trying Dapsone I have improved somewhat. I have went to a completely miserable existence living brain fogged, in constant pain, no energy, laying on the couch to having days now where I don't experience much pain, brain fog has improved noticeably, and have days I have so much energy I feel like the hulk when I am able to exercise. It's been a slow progress, and I'm still unable to l live a "normal" life. I still have to deal with judgement of those who don't understand, however, progress is being made. Hang in there.
Posted 2/11/2021 2:18 PM (GMT 0)
N-acetyl selank might be a way to go for healing damaged gaba receptors. Limitless Life Nootropics has a nasal spray, some people seem to really like it
Posted 2/11/2021 4:30 PM (GMT 0)
When I was addicted to benzos I used tons of benadryl, l theanine, CBD oil, magnesium, can use them all at the same time. There are some therapists that deal with chronic illness and even some that specifically are LL. Sadly, they never take insurance though. I refuse to see a therapist where I have to constantly explain my illness and constantly feel defensive and like im struggling for them to understand it. I particularly hate when i get that subtle feeling that they think I'm "nuts". I also get super incensed when they don't get what lyme anxiety is and just think your "normal anxious". It makes me insane trying to explain how it's a completely different thing.
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