Well That Was Discouraging..

This post is just to vent because I'm feeling so low and have no one else to turn to.


Had an appointment with a nurse practitioner at the allergist office where I got tested a few months ago for allergies ( Pre Lyme diagnosis).
I only kept the appt because I had a couple questions mainly about the mold exposure I had the past year and the stool testing they wanted me to do for candida/leaky gut. I never did the stool test because then got diagnosed with Lyme and went on abx. But it's definitely still a concern I have that I'm hoping to explore with a naturopath soon.

Anyway, as far as the mold, told her my exposure story. She was only interested if I have had any breathing or sinus issues. Which I really haven't except for occasional very small amounts of blood in my nasal mucous. She said that's from them being dry. I have these weird bumps on my shoulder she asked to see and didn't bother to look at them. Claimed she couldn't see them. Are you kidding?

As far as my allergy test only things that came back where allergies to cat hair, a certain kind of grass and mold. But these were next day reactions and for the mold the numbers rubbed off so couldn't tell which kind it was for. She didn't seem interested either.

So I had to tell her about my Lyme diagnosis because I wanted to know if I could still do the stool test on abx. The answer is no. She said, " But I'd be interested to see the results of the stool test." Yeah , me too!

Then she said, well, "if you have had Lyme disease for a long time and it's in the late stage, you will never get rid of it and always have to deal with it. It's not good at all." I was already sitting there freaked out because the driver who took me to my appt asked me how to get there and I couldn't exactly remember. I couldn't direct him. Not to mention I was depressed enough that I haven't even been able to drive myself anywhere anymore. I had been going / driving to that neighborhood my entire life almost. Really scared and freaked out every time I'm in this fog and forget things.

Will my brain ever come back? My memory? Things are so bad. I don't know what else is wrong with me either. Besides the frequent heart palps that scare the daylights out of me.

I think fungal/yeast and maybe some adrenal fatigue. But just feel so overwhelmed right now and depressed. People on here are kind enough to give advice and suggest things and then I forget what I'm even doing in the middle of trying to do it or read about it. I'm scared too that I may just be making a potential fungal problem worse with abx. I know my gut is probably a mess.

I've been sick, single and alone for so long. I really don't have aany friends left save for a couple who I haven't been able to spend time with anyway. I've been trying to be as positive as I can and I'm at least grateful that I finally got a diagnosis. Or a main one that explains a lot but she really made me feel hopeless. I started to think on my way home, if I have Lyme, will anyone even ever want to be with me? Dating is the furthest thing from my mind and has been for a long time. I don't even remember what that's like and don't even feel anything like myself at all so that's out of the question.. I wish it wasn't but I'm no where near close to even feeling like me again or remember what that feels like. or being able to put my life back together and start over. But once I can or do, am I destined to be alone forever? I already missed the prime of my life where marriage, babies, etc are supposed to happen.

Is there any hope at all? How do I know I'm even treating this the right way?

Just need some encouragement right now or success stories? Not just a pat on the back but something to give me some hope? This NP really made me feel awful and was just another wasted appt and money I don't have. I shouldn't have even gone. Really feeling sad and hopeless.


Thanks from the bottom of my heart to whomever read this and esp responds. I promise I will pay it forward when I can.

I know this isn't the take away, but I'm amazed the nurse acknowledged chronic Lyme.

I'm not a success story, yet. I have made big improvements in the past 6 months of treating. Just this afternoon, I thought to myself, "Huh, I just went a couple of hours without once thinking about any pesky bacteria." It was a floater dawdling across my field of vision that brought me back to the dark side. So, it does get better. Slowly symptoms start to fade. You definitely notice when a big one goes away. Those warrant a small party.

As I get closer to remission, and hope not to relapse before I do, I've definitely been thinking about how dating will go in the future. It's been off the radar for the duration of this adventure, but I now catch myself wondering how it will go. I'm super honest, and no doubt will feel morally obligated to say something, thereby shooting myself in the foot. It's weighing on me more and more and I know it's a hurdle I will most likely need professional help clearing. I'm curious how others have dealt with this piece of the puzzle.

Mergirl - Yes, yes..,YES there is hope!

There are many success stories on this forum - people do get well.
Many of those who aren't well - have given up and given in to the disease.
It is not an easy battle for most of us who have Chronic Lyme.

That's why this community is a God send. We are here to support one another and to pick each other back up time and time again.

Some successes on this forum:
Traveler, PeteZa, Multifacetedme, cd3764, RowingMom's daughter, Opugirl, Chapelle Lymepickle,
Those are ones I just thought of quickly.

I personally know several (not on the forum) people who have healed.
One lady healed after 3 1/2 years. Just think if she had given up at 2 years in.

You guys are all so awesome and amazing. Really. I'm so touched after reading all of your responses. I deeply appreciate every single word. It's been kind of a rough day all the way around. Between that appt and getting my positive Igenex test which is actually more of a feeling of validation for me after being debilitated for so many years with no real answers. At least now I feel like maybe I have a chance at least.

Sharo,

I gladly accept your hugs! Definitely feel like I can use one right about now. I used to be a big hugger but lately no one to give one to or vice versa. Even the few people in my family who know what's going on would never hug me or even tell me it's going to be alright. Nothing. It kind of blows me away. I like to think I would try to help someone in my life

I agree with you completely. I'm astounded at the lack of even basic social skills of most of the docs I've seen. Even my current LLMD although I know he cares and tries to help as many as he can. But that NP today kind of made me feel like it was my fault somehow. Just not what I need lately. I'm sure I'm being a little more sensitive about things then usual too but I don't know. Just made me feel bad. The old me probably would have walked out crying but even basic emotions are hard for me to feel lately. Except reading your responses made me a little teary eyed. So maybe I'm still somewhere underneath all this still.

Tx Bart,

I hear you. I'm actually kind of amazed she acknowledged it myself. Then again, I'm still pretty new at telling doctors my diagnosis so I'm not sure what to expect. My pcp just saw my positive igenex test and still doesn't believe me , yet I just told this NP because they asked if I was on any new meds and had to mention my abx and ask the questions I needed to.

Just hearing you've noticed improvements gives me hope and I appreciate that. I know it hasn't been long for me treating and I may have some other things to work out too to heal but I've noticed very very slight improvements with a few of my lesser symptoms in the past month. I think I have anyway.

I feel the same about the dating thing. I guess right now it's probably better to try to focus on one day, one hour at a time but yeah. I think who is going to want to deal with it or risk getting it? Like you, I'm also interested in hearing about how others have navigated this when they came to it. I have a whole life to rebuild first though when I'm well. All these years of misdiagnosis has cost me literally everything.


Dahlias,

First of all, that's a pretty username. I think that all the time too. Who am I? When is the last time I felt like myself at all? I feel like today, even through the fog I got a very small and fleeting glimpse. A little feeling of what it felt like to be me before, if that makes sense. And I was thinking, if I make it through this, I'll never take that feeling for granted again and I'll never be the same person I was before I got sick years ago. The old ego I used to have is gone. I realized how I would be changed but somehow for the better.

I love your story about the woman from your support group. That is very encouraging! I wish I could hear more of her story. I also wish I had a group like that where I live but this forum so far as been just as helpful to me lately and I'm so grateful for it and all of you.

Your last few sentences gave me hope as well. It's easy to forget when you feel like you've just had life's downs for so long and don't understand why. Your analogy about looking in the rearview mirror is very comforting indeed. And yes, will definitely find a new allergy and a new primary care doc as well!


Girlie,

As usual, you're just in time with just the right words and encouragement. I feel like I need that confirmation of hope lately. I will definitely look up some of the names that you mentioned for success stories.

This community IS a God send and it's due to people here such as yourself. I'm still pretty new here and you've been so welcoming and generous with your time and helpful. I see it on other threads here as well. Thank you so much.

Pirouette,

Same with you. You've been there to pick me up over and over lately. Thank you.

I would agree I'm definitely in the worst stage. This has been going on for years , just never knew why. Even had a major surgery 6 years ago that I never thought I'd recover from. I thought, if I can just make it through that. Then all hell broke lose with the rest of my body bit by bit. Now I know why at least.

You're absolutely right. I need to try to take things in smaller bites. I do worry about the future a little too much and tine frames. I'm so anxious to start loving again as in sure you can all relate to. But taking things day by day is a good idea right now. And you keep reassuring me you're there to help and that means everything to me right now. I'm still trying my best to implement your protocol you left me the other day.

It's funny but I've been forgetting what it says and going back to read it everyday so far. But I'm trying! BTW , if you reply to this later, if you can just tell me how to take my mcp around my abx and supps. You might have mentioned it in the other post and if you did, I apologize. I received it but haven't started it yet and would like to.

Thanks for your comment about my clarity. I feel like compared to how I used to talk and write, I must sound like a confused idiot. You just made me realize that I'm probably being too hard on myself. At least I sound clear even if I don't feel it yet. It must count for something!

Thanks for reminding me to buy more post it notes too. I actually ran out days ago because I've literally had to write every single thing I need to do and remember on them everywhere and I ran out and forgot to write myself a note to buy more!

I will try my best to organize myself a little better tomorrow. I think that's the part I get so frustrated with lately too. Things that used to be so easy to organize or not. I've been mixing up so many things and tines and forgetting so much. I barely know what day of the week it is anymore lately. Then in the morning I'm so depressed and scared to face another day of it that I don't want to get up. Somehow I have been though . If I don't , I know there's no chance to move forward. And I want that chance more than anything.

I actually am going to go take my detox bath now. Good call. I really should be nicer and more patient with myself than I have been. I just let fear take over way too much.

I really can't thank you ALL enough who have replied to this thread. I'm definitely feeling a little better then I was earlier after reading all of your kind, caring and thoughtful words. Very grateful for you all and when those bad feelings hit I'm going to come right back here and read them all again.

Many hugs to you all and much gratitude.


Mergirl