A few members have reached out on my personal email recently and inquired how I have been since it's been over a year I left this site, Thank you. I would like members to know my life has gone to from bad to worse. This crap is probably in my heart now, guess what? oh well.
I told my family I am finished with treatment,I have a right to refuse treatment. I do not have the funds anymore. It was a joke all along. I'm sicker and out a ton of $$$$$..riddle me that?
My job and new very first apartment (officially got it last November) is at stake!!!!! Why???? The only 2 good things in my life are at stake.WHY????? Think long and hard if lyme treatment is worth it. I did not get my life back. All the good things get taken from me the harder I try. No doors open for me, too many are closing....slamming shut.
It only made my life worse, I wont even begin to tell you all my symptoms, not to mention the backstage of life that is stressful for healthy people that I still deal with.
I do not get a break, ever. I inquired what someone thought of euthanasia as in Vermont they're allowing it (well that conversation wasn't pretty).
I watch friends, relatives and coworkers grow and thrive and I am only going backwards. No quality of life. I cancelled my f/u with my second lyme doc in 3 weeks. I am just done. Sorry guys not all of us heal. 26 years now of illness, 4.5 yrs of treatment with nothing.
I really thought I hit rock bottom long ago, there is no such thing anymore. I'll continue to dance with the devil and continue to watch prayers and dreams unanswered in the rear view mirror at 38 yrs old. Pain is not temporary, only happiness, relief is temporary for me.
Moderators please feel free to (again) deactivate my profile. This is an update on how I am doing. I do not want lecturing or encouragment on returning to treatment. I cannot contribute to anything on this site. Thank you.
Posted by hiker53 (Member # 6046) on :
I am not going to suggest you go back to Lyme treatment.
I am going to suggest you look to God for strength. Stop dancing with the devil and let God hold you up.
Life isn’t fair. Everyone on this website knows that or we wouldn’t be here.
And although I have pity parties for myself, I also find joy in each day of being alive.
I hope you will look for the small blessings, too.
Posted by Mountainview (Member # 52772) on :
I walked away from religious faith. And do not believe anymore. Death is a blessing for some people.
Posted by hiker53 (Member # 6046) on :
The fact that you came back here to tell us how you are doing tells me you are reaching out and don’t truly believe death is a blessing for you.
I once walked away from my religious faith and am so glad I walked back.
You may not believe, but I will pray for you.
Posted by Mountainview (Member # 52772) on :
With all do respect you do not know how I feel. Ive had control and things pushed on me, dont do that. I have signs of trauma induced Schizophrenia from being told nothing i do is enough and always judged, it was never my body my choice.
I have literally about 50 things wrong with me that I didn't have prior to treatment. That's not healing come on.
Death is and will be a blessing to some of us. In Vermont they're legalizing elective euthanasia, even for young people when all meds and finances are exhausted, look it up.
Thank you, but those prayers are empty. If there was faith we'd all be healed. The ones that do heal it was by coincidence and real good science.
I came on here to let ppl know because some members reached out to see how I was via my personal email and I don't want them to think I'm ignoring them
Posted by mlg (Member # 35383) on :
MountainView, I am not imposing my beliefs on you. On this journey, I became an atheist for a time. But then God showed me something that was for me impossible. (He did not heal me or get me better) for a long time. I begged God to take me because I couldn’t take the pain. And within two days God did answer one of my questions. I will have you in my prayers. I have returned to God. Life is not fair. I see people have great health and prosper in so many ways and some are not nice humans. I give it up to God and ask him to help me carry my cross.
Posted by Mountainview (Member # 52772) on :
I'm not imposing my beliefs either but there's no such thing. I learned that the hard way. Sorry I chose not to belive that fairy tale. Nobody gives a flying **** about human life anymore. Not mine. Not ever.
Posted by Mountainview (Member # 52772) on :
Guess what else...I ruined another family vacation. I can't eat, pain walking, sleeping off and on all day. Screaming and crying fits. HORRIFIC intrusive thoughts. We barely got to do anything because of me.
Posted by Bartenderbonnie (Member # 49177) on :
Well welcome back Mountainsky.
I’m laying here in bed, sick and struggling. Yet I come to LymeNet for support. 💚
I mean after all, LymeNet is a community support group for Lyme and Associated Diseases. We NEVER give up on ANYBODY and yes, you are included whether you like it or not.
I don’t understand you saying “ The ones that do heal it was by coincidence and real good science.”
This is not true. Ask any Lyme patient who has achieved remission and I guarantee you will not hear that. They will attribute their success to their HARD WORK! Please don’t take that away from us. We earned it.
We are called Lyme Warriors for a reason!
It is through a combination of strength, grit and determination to restore our health at ALL costs, blood sweat and tears, numerous medical doctors, numerous medical procedures, a competent LLMD, but most importantly when we’re down, we get back up.
Respect sister.
Posted by Phoiph (Member # 41238) on :
Mountainview,
I offered to help you before, and I am offering again...
I was thinking perhaps you might be more open to it now that you feel you have exhausted all other options.
Posted by Mountainview (Member # 52772) on :
I declined your offer Phoiph multiple times in the past, and I will be declining again. Thank you
Sorry Bartenderbonnie I don't want to be part of this anymore. Another Lyme group I was in had too many fearmongers, judged, lectured and at one point I was threatened via personal email by a MOD for having an opinion (yup you heard right) but everyone else could do it.
I'm done. I get enough of that as it is in the outside world. It was never my life it was other peoples, I was just in it as a prop.
And I'm not telling you everything, this is maybe only 30% of the pain and nightmare. I don't need lectures.
Posted by daisys (Member # 11802) on :
Mountainview, my heart goes out to you.
For me, any sort of pressure, even by well meaning people, feels like taking a nice warm shower--with a bad sunburn.
I've asked some friends not to say anything that starts with "Can't you just..?" They have no way of knowing what complications I'm working with.
There's so many treatment options, and what works for one may do nothing for another.
In 17 years of treatment, I've tried many treatments, but there's many more I haven't gotten around to yet. I am improving as I go.
I hope you hang in there. Anything you try can make a difference.
Posted by Mountainview (Member # 52772) on :
Thanks but nothing made a difference. My life is over. My body, mind and spirit was brutalized. No quality of life anymore. I wish ppl were more empathetic to my feelings and looked at how I saw things. Again I'm just a prop. 4.5 yrs iof brutalized misery and pain just by trusting the wrong ppl. I was told thjs very well could be the "first course of the night" and things could be even worse. I'm losing too many things. I could very well live till I'm 90 but with no quality of life? Nope!
Posted by Phoiph (Member # 41238) on :
Mountainview,
I relate to you because I also experienced hell on earth. I came to believe no one could help me; I had exhausted all options, and death was my only way out.
There are really no words to describe the anger, anguish and despair. I tried, but was never one who could somehow accept my plight and find peace.
Please reconsider. At least allow us a short conversation before you reject my offer this time (I do not take compensation).
I believe there is another path for you.
Posted by Mountainview (Member # 52772) on :
There's not. The best LLMD cannot help me anymore. My hopes and dreams and they're gone. I have severe ptsd from all this.
Save another "crazy woman"
Posted by Phoiph (Member # 41238) on :
The best LLMD couldn't help me, either, only caused further harm, and deemed me a "treatment failure".
That doesn't mean there's not another path, or I wouldn't be well today.
You don't have to believe in anything or anyone at this point...just leave a crack open for possibility.
Will you have a short conversation with me before you decide I have nothing to offer?
Posted by Mountainview (Member # 52772) on :
Thanks but I am not interested . I've had enough promises and hope given to me for only all it to shatter.
Posted by Mountainview (Member # 52772) on :
Thanks but I am not interested . I've had enough promises and hope given to me for only all it to shatter.
Posted by Phoiph (Member # 41238) on :
I am very sorry to hear that, Mountainview.
Best of luck with whatever path you choose.
Posted by Mountainview (Member # 52772) on :
Thank you. They say don't have regrets in life but I do. As soon as I entered treatment my life shattered. I was sick before but not like this. Treatment, yes treatment shattered my life, not the disease. Not only my body and mind but everything else was taken as collateral.
They say well being in treatment can make you worse BUT NOT LIKE this. 2 LLMDs that said this is not normal. My family personally knows of families that were sicker than me with Lyme/Co's but got better in less time..... RIDDLE ME THAT?????
What the **** happened to me? I'll never get over that pain and anger. This isn't living!!!! This is cruel!!!!!!!!!!!
Posted by Phoiph (Member # 41238) on :
I get it...all of it...most of us here do.
What I don't get is not grabbing for a life raft that's been thrown your way.
I suspect the reason is deeper than fear of disappointment, but only you can answer that.
Posted by Mountainview (Member # 52772) on :
Some don't want to grab a life raft. It's not a life raft it's a joke. It ll just bring more pain. Another 4-5 yrs of this? Losing more? More Heartbreak? More $ gone? More anxiety, nightmares. Watching other ppl shine in life and you're pushed back to the end of the line? Ugly comment? Kicked and spit on when youre already down?. Nope.
What doesn't kill us makes a stronger? Nope not for some. It permanently traumatizes you mentally and physically.
Posted by hiker53 (Member # 6046) on :
So, Mountainview. You say you are stopping treatment. I have no idea what treatments you have been doing.
Okay. Give treatment a break.
I stopped antibiotics after about a year because my body was a total wreck. I gave my body time to heal from that and then several years later did other treatments.
Infrared light treatment and energy healing. Really helped.
Also the break from treatment helped me mentally and and also gave me time to save money for the energy treatments.
Nothing wrong with taking a break for a chunk of time. But not a permanent break from life. Call 988 if you need to.
Still going to pray for you.
Posted by Mountainview (Member # 52772) on :
Whether I take a 1 year break or not nothing will work. I was permanently disabled from treatment nothing will ever get me back. You cannot reverse the damage.
Posted by hiker53 (Member # 6046) on :
You might be surprised what can be reversed. Maybe not all but some.
The first thing, honestly, that has to be reversed is attitude.
A negative attitude adds stress and stress makes one more ill.
Hate to say that but it is true.
Is there a Lyme support group in your area?
I got tons of support from people at church. Positive social contact is important.
Hang in there.
Posted by mlg (Member # 35383) on :
I lost 70 lbs in 1 year. I had heart, thyroid, glucose, and sleep problems. I have a before me and after me. I will pray for you. Look for a support group. Church prayer. And I called different prayer lines. I had a priest give me anointing of the sick.
Posted by Mountainview (Member # 52772) on :
Mlg, I reached out to Pastor lines, actually spoke to a pastor over the phone for a long time months ago , maybe its been a year already.
A few weeks ago at my work there was a plastic baggie filled with a rosary, pin, prayer cards placed on top of my car...nobody else's car only mine. I work at a hospital it could have been anyone, another staff member, patient, visitor? Nobody in my department did it.
BAM things got even worse the very next day. It's like religious faith is against me so now I'm against them.
I had an awesome therapist who actually runs Zoom support groups for chronic lyme in my state as well as Covid long haulers, MCAS, Cfs/Me etc. She suffered the same symptoms just like me and is around my age, she was literally an angel.
She does private therapy sessions too and took me on as a patient in the early summer. I dropped the therapist I had the last 2 years to see this one. Unfortunately, out of all the insurance companies she started accepting mine wasn't on the list so I was paying out of pocket. It got to be too much so I had to stop seeing her.
She was practical, a straight shooter and IMMEDIATELY brought me back to reality and turned me into a "steady eddy" with my fears over this disease. She didn't judge, lecture or fear monger me. I felt safe immediately in her care. I felt hope and relief the first time in a few yrs.
I was beyond devastated I couldn't see her anymore. Luckily I got reimbursed 80% of my $ after submitting the claims through my insurance. Hoping I can see her again in October even if it's just once a month sessions.
I tried seeing another therapist last month but during our brief first telehealth "intake/intro" she immediately interrupted me when I told her my background. She didn't believe we were a good fit, my case seemed too complex for her. Ya think lady?try living it!
Posted by hiker53 (Member # 6046) on :
Mountainview--A good therapist is like a diamond. Hope you can get back with the one you like.
Satan has a way of knowing when God wants to comfort you and will do everything he can to thwart that.
So, feeling bad the day after someone reaches out with prayers cards doesn't mean God is against you, it is Satan, in my opinion.
Posted by Mountainview (Member # 52772) on :
Alot of ppl are against me. When I am "happy" or "positive" ,then I'm too niave. I know the game. Its a waste.
Posted by Bartenderbonnie (Member # 49177) on :
Mountainview
How can we help you?
Would you be interested in Global Alliance Foundation’s Peer to Peer program? It’s free! https://peertopeer.globallymealliance.org/ Posted by Mountainview (Member # 52772) on :
I'll think about it. Thank you though. I'm so overwhelmed I cannot handle one more thing guys, it's never ever been this bad in my life. I never have a break even on vacation. I ruined it for my family, everyone around me. I was so sad to come home today, how dumb is that?. I cannot have normalcy even for a few hours.
Posted by Mountainview (Member # 52772) on :
I'll have to pass on the peer to peer. I'm not emotionally stable to really talk and listen to another Lyme sufferer (in remission, cured or not).
No lie the last hour I started to calm down. Put some TV on and was relaxing since I'm going back to work tomorrow and will be up very early. Someone reached out to me from another Lyme site and said something that immediately brought my anxiety and worry back. I went from 0 to 120. Now I have a huge pit in my stomach.
I'm telling you guys something just wants me to suffer and suffer.