This is topic Apologies in forum Medical Questions at LymeNet Flash.

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Posted by Mountainsky (Member # 51857) on :
I'm embarrassed by my own stories/posts and experiences and know I'm too negative, annoying and upsetting everyone and I can't take it back.

Its selfish and I feel I'm being a Debbie downer.

That's the very last thing members on here want to read.

Again sorry for this. I feel like a horrible person and feel like it's too late to change.

Alot of ppl ( outside of this site) have negatively changed their opinion of me. I wish people would understand.

Again sorry. Maybe I should deactivate my profile for a bit.
Posted by Rumigirl (Member # 15091) on :
A teacher once said, "If you are embarrassed about one thing, you will be embarrassed about many things."

Of course, you are not a horrible person! You are suffering. There is no shame in that. We've all been there. Anyone who thinks less of you because of your struggles doesn't understand what you've been going though.

You know the old saying: When you are going through hell, keep going!

The only way is to pick ourselves up off the floor and go forward no matter how many times we "fall on the floor." No one on LN will judge you. We are often our own worst enemies that way. Because we don't live up to our ideals, or others' ideals for us.

Love yourself no matter what, that's the only way to move forward.
We are cheering you on. Kick blame and shame to the curb.
Posted by Mountainsky (Member # 51857) on :
Thank you. 💚

There's other things too going on non-Lyme related. I've had about half a dozen therapy appts but feel it's not doing anything .

I feel things are only gonna get worse, I worry so much. Yes I'm waiting for the other shoe to drop so to speak.

[ 10-04-2021, 07:23 AM: Message edited by: Mountainsky ]
Posted by Garz (Member # 52095) on :
often the person having the therapy doesn't notice the changes at first

my partner had huge mood swings, anger, rage, depression etc - and things started to change after just a few sessions - but she was adamant it was doing nothing - but to me the change was huge.

hang in there - and keep going

if the future seems scary or overwhelming - just shorten your time horizons to thinking only about today - or if its really bad - just this next hour - or even the next 10 mins. if you do a that and today you are already doing everything you can - no point worrying about tomorrow.

whatever you need to do to get through
Posted by bcb1200 (Member # 25745) on :
Hey we've all been there.

When I relapsed back in late 2015/early 2016 I was posting 5 times a day. Desperate to get out of the hole. It happens.

I go back and read my posts from that period every so often. I'm glad I made it through and have now had several great years. But boy was that a dark time.

Mountainsky, if memory serves you got a lot worse after starting Methylene Blue. Correct?

Disclaimer: I'm not a doctor. So take all of this with a grain of salt. But in my experiecne, if you r symptoms got worse while on treatment then it is usually an indicator of what you need to fight. You kicked the hornets nest.

Now...the answer may not be to "power through." A small speedbump is fine. But you can't crash into a brick wall.

So I would look at that. What are you doing to detox. And if you LLMD isn't helping, get another one. (think I know who your LLMD is in MA. I believe I saw her for a while too.)

Good luck!
Posted by Mountainsky (Member # 51857) on :
I already crashed into a brick wall. Fearing this could be permanent from her meds? I was never like this before I saw my llmd in 2019. I used to say I never regret anything, you live and learn but....this I do.

I feel I had my life stolen . I'm too angry, bitter and miserable.

I care about other ppl and get excited for their endeavors, achievements and watching them succeed.
Posted by Mountainsky (Member # 51857) on :
I wish I was able to call igenex myself on my results but I know their policy is notifying your doctor only.
Posted by Garz (Member # 52095) on :
you may not thank me for this right now but i say it as i truly believe it could help you more than any pill or potion right now ....

"I feel I had my life stolen . I'm too angry, bitter and miserable."

i know its difficult and we can all empathise as we are all suffering and we have all lost our former life to a greater or lesser extent - or we wouldn't be here

BUT, you need to find a way to get past this narrative of your life to this point and pattern of how you interpret the future as it unfolds

i know this is very hard - almost insulting - to hear someone say it to you in such stark terms right now

you may think the illness itself is the issue and this just needs to get better and your thoughts about your life are incidental?
But you really do have to find a way to change it as otherwise everything that happens from this point on will tend to be interpreted through this "lens" and confirmation bias will ensure that is exactly the life you will experience.

while you are focussed on the injustice of your situation, what you feel you have lost, angry at everyone who you see as adding to your hardships, feeling totally miserable while your day is full of thinking these thoughts and you can only imagine more of the same, or worse, for the future. This will leave you with little or no energy to fight the disease itself or even the resilience to endure the treatments.

remember, recovery is possible, a good life after lyme or even with lyme is possible, many good things can happen and many positive experiences can follow -

this kind of change of narrative is hard - and this illness is hard - we all agree - you don't need to apologise for feeling this way - but it should also be clear to you by now that going on as you are is not an option.

the good news is that rock bottom is often the place that this change comes from, and clearly that's pretty much where you are right now - so this can be your turning point too.

you have already begun to reflect on how your thought processes are impacting.
others have done it - so can you!

its great that you have also already found a professional to talk to about this stuff - that's a really positive step. well done.

that's 3 things in your favour right now.

focus on that - and any other positive thing you can do today to make your life even 1% better
grab any tiny little positive thing that comes from that - and any other positive thing you can notice today and use it to start to change the focus.

we are rooting for you
Posted by Phoiph (Member # 41238) on :

My offer to help you is still open...just PM me.
Posted by LSG Scott (Member # 21624) on :
Garz that was well said
Posted by Mountainsky (Member # 51857) on :
I only just humiliated myself more with this post.

You mean well Garz, thank you. But I just made myself look even more weak vulnerable and an idiot.
Posted by Lymetoo (Member # 743) on :
Just take to heart what Garz said. Work on it and it will come to pass.
Posted by Mountainsky (Member # 51857) on :
Sorry lymetoo, I have been and nothing works. Only getting worse.
Posted by Phoiph (Member # 41238) on :

It's not your fault if you are currently unable to fully absorb Garz's awesome and heartfelt words of wisdom.

Copy and keep them for later, as they will surely be helpful when the time is right.

Your brain is currently operating in what I call "reptilian mode", which is to say that the primitive, survival brain is in charge and it recognizes only pain, fear, fight and flight.

My brain was fully hijacked by Lyme, so I know how this feels. Nothing seems to penetrate or help; everything you try makes you worse. Nothing makes sense. The belief is that nothing "will" help, and so you grasp for straws, only to reject each one.

Because I have gone through this living hell and and am now 100% well, I feel optimistic I can help you. (There are no strings attached here; I do not take compensation.)

If you PM me, we can connect and have a conversation...then you can decide.
Posted by Mountainsky (Member # 51857) on :
Thanks Phoiph. I will PM you eventually.

Sadly I don't think it's Lyme anymore. The igenex results should be back in about a week now.
Posted by Phoiph (Member # 41238) on :
FYI, what I discovered is that it really doesn't matter if your condition is labeled Lyme or not, once things have become chronic.

The common denominators of many neuroinflammatory conditions are the same, and this is where the treatment needs to be focused.

One last word of advice...don't stay in the vortex and let "eventually" become "forever".
Posted by Mountainsky (Member # 51857) on :
I'm cognitively declining more and more and losing my memory.

Any worse I could lose my career.
Posted by Phoiph (Member # 41238) on : my point...what are you waiting for?
Posted by Lymetoo (Member # 743) on :
Originally posted by Phoiph: my point...what are you waiting for?

[group hug]
Posted by Garz (Member # 52095) on :
Originally posted by Phoiph:

If you PM me, we can connect and have a conversation...then you can decide.

great offer! nice gesture Phoiph.

Mountainsky - that's another great thing going for you - people who care and are willing to help - please do reach out.
Posted by Mountainsky (Member # 51857) on :
Thank you Garz but I'm all set.
Posted by Mountainsky (Member # 51857) on :
I do not give out personal information to anyone I don't know. Nothing against anyone on here
Posted by Mountainsky (Member # 51857) on :
If it's not Lyme then it's irreversible brain, body damage from years on psych meds probably. You can't recover from that. It's like someone doing street drugs or heavy substance abuse, your brain's fried.
Posted by Phoiph (Member # 41238) on :
Posted by Phoiph (Member # 41238) on :
I'm currently working with someone who has that same issue, and her before and after brain scans prove otherwise.
Posted by Mountainsky (Member # 51857) on :
I just do not see hope. Believe me, I've been disappointed and heartbroken hundreds of times over treatment and protocol failures. Damage is already done. I've learned to accept it now.

My llmd (more than once) in a demeaning way has asked why I cry everyday. I guess as women that makes us look weak? I guess its better to tough it out and stay bitter, miserable.
Posted by Mountainsky (Member # 51857) on :
Oh also ( she has said this more than once as well) I probably am not *that* sick since I'm able to work a fulltime job.

Nice huh?
Posted by hiker53 (Member # 6046) on :
Hang in there.

I worked full time teaching junior high (can you say stress?) for 15 years after I got Lyme until I was eligible to retire.

It is amazing what the mind and body can do when necessary.

It is super tough to deal with life when protocols fail. But I urge you to keep plugging away and don’t give up hope. [group hug]
Posted by Phoiph (Member # 41238) on :
Originally posted by Mountainsky:
I do not give out personal information to anyone I don't know. Nothing against anyone on here

I really hoped you would give me the chance to try to help you, Mountainsky (you could always block your number for privacy if you were to call me).

Maybe in the future you will be more open to it.

Best of luck to you in finding healing.
Posted by Mountainsky (Member # 51857) on :
Phoiph its nothing personal, really. I am in a very dark place right now. It's hard to reach out to someone, I'm so burnt out.

I'll keep an open mind with your offer. I know your intentions are good.
Posted by terv (Member # 29410) on :
I suggest you find the largest support group in your are and go to it. You need new doctors and they are a wealth of information. How they treat, cost, good or bad. Not only LLMD's but other doctors too.

I think hopingandpraying keeps a list of doctors for different areas. There may be others who do. You probably have been to SeekingDoctors but I htink there are ways to find support groups in your area.

As overwhelming it may seem find a new doctor.
Posted by Mountainsky (Member # 51857) on :
Yes, hopingandpraying gave me a list of physicians not only in my state but surrounding ones. It's alot to think about and decide. There is a llmd down the road from my job that I've been eyeing.

I believe my current LLMD is burnt out. I've had others who have had this llmd say the.

Last week at my f/u I was in the waiting room and overheard the office manager explain to 2 patients via phone that they were booking way out in advance. One was the parent of a sick child and needed a sooner consultation appointment so they decided to go somewhere else. Sad
Posted by Bartenderbonnie (Member # 49177) on :
Please don’t feel one ounce of guilt over posting your journey.

When you get well (trust me you will), you won’t remember writing them. It will then come back into your memory. You will realize, Wow, I am a strong woman, stronger than I ever could have imagined!

Do you realize you are only 1 good day away from changing your mindset?
You are so close.

Let me explain.
I have a calender journal that I write my daily symptoms on.
I decided I would put a red heart sticker on my good days to track my progress.

I was 3 months in, ready to give up and get off the meds, and then out of the blue, a cloud lifted and I was able to put my first heart sticker on.

That day was the THE day.
I will never forget it.
It made everything clear, I could do this, will do this.

Lymenet was there every step of the way. Lots of guardian angels. 💚
Posted by Mountainsky (Member # 51857) on :
I've had zero good days so keeping a journal in my opinion was pointless and more depressing.

Its a long holiday weekend and I'm yet again bed ridden.

And yes I am gonna feel guilty because I've had plenty of ppl on the outside tell me so.

Trust me, it's better just to lie and smile and say you feel fine, never felt better then stay in treatment and feel bad and feel like your a burden.

I did it for well over 20 years, I can do it another 20+ years.

[ 10-09-2021, 08:25 PM: Message edited by: Mountainsky ]
Posted by LSG Scott (Member # 21624) on :
you need to snap out of your self pity party its not helping you
Posted by Mountainsky (Member # 51857) on :
Hey LSG Scott don't worry about it, it's not effecting you.

There's other stuff going on that I don't post on here and haven't told anyone.

If it bothers you don't read it.
Posted by hiker53 (Member # 6046) on :
Love BartenderBonnies idea. I also keep a calendar as well as a blessings/prayer journal.

Really helps me especially the blessings/prayer journal.

Some days I really have to make an effort to look for the good.

But just take one day at a time and you will see improvements. Maybe not as quickly as you wish and your life may look different before you became ill, but life is precious nonetheless.

Posted by Mountainsky (Member # 51857) on :
Thanks Hiker,

But I just cannot do journals. It has never been my thing. I've had multiple people tell me from friends, family and coworkers that it's a good idea. Just isn't for me.

If I do write stuff done it's before a f/u appt with my llmd.

Kudos to ppl who do, I think thats great for them.
Posted by Bartenderbonnie (Member # 49177) on :
Broken crayons still color.

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