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Just can't imagine being normal ever again

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Posted 7/5/2015 10:23 PM (GMT 0)
Hi all,

I've been fighting for 2 years now, which is not as long as some on here. But it's been so long since I've felt normal that it's hard to ever imagine being normal. I haven't had a clear thought in a very long time, this lousy brain fog has me feeling like I'm in a video game for the past 2 years. Most people can't imagine feeling this bad, and I can't imagine feeling normal. It must feel pretty good being normal. I want it so badly but it just seems like it will never happen.

I'm very disappointed with my lack of progress thus far and am unable to work. I'm about to turn 24 and started feeling ill shortly after graduating college. It's hard to watch all my friends moving to the big city, getting promotions already, enjoying their 20's while I just wake up every day trying not to end it. Just frustrated with all of this. I used to never understand why people committed suicide, but now I get it completely. It's hopelessness that things will never be the same, that I'll have to live like this forever.
Posted 7/5/2015 11:08 PM (GMT 0)
You won't be normal ever again lol. You have Lyme disease, and I believe it changes all of us in one way or the other. mental and physical parts of our realities become distorted terribly along the way.

It will always be OK. It will even be good again. The only constant is change. Change up your protocol again. Maybe you just haven't found the right medicine yet. Fully accept this for what it is, and stay in the present moment. Try not to mourn the past or future.

You just have to keep going. You'll figure it out. I'm so sorry, 2 years is a really long time. Maybe you should get a second opinion? Maybe a fresh perspective is what is needed right now.

I'm 26, and I've missed out on a lot too. I know how that feels. I really empathize. It's not so much about fighting for me anymore. It's more about surrender. I just watched something online about that and I swear it was made just for me because it's exactly what I have been feeling! Maybe you should do a grateful list for a while. At the end of everyday write down 3 or 4 things that you are grateful for. It helps me sometimes. Sometimes it feels like a joke lol.

I too am familiar with hopelessness. I also understand suicide on a level that is hard to admit. I really hope you get some good days thrown your way soon. Just to have a bit of a break and regroup. I'm really sorry :( I'll be sending all the good vibes I can possibly muster for hope that you have at least one good day soon. I know how far every good mood we can get our hands on goes!

Be kind to yourself. A cool prayer (it's pretty silly lol but in absolute desperation it's just a focal point) I learned to say to my body when I am really down goes like this-

I love you
I'm sorry
Please forgive me
thank you.
Posted 7/5/2015 11:21 PM (GMT 0)
Pete - I don't know what to say to you....to help you...just I'm sorry for you having to go through this...I can't make it go away...only offer you some support, and remind you that if you give up...you will never know...that your good days, your feeling yourself...were just around the corner.

It might be tomorrow...or next week...but I know that if you stop fighting, you won't know.

I have been unwell for over two years now, treating for one. When i was first diagnosed, positive test..I was ecstatic. Yay, I thought, good news, I said. I've been healthy all my life...I've got this...I will take those antibiotics, and I will be good again, in a few months.

So disappointing. So stupid of me.

But, I pick myself back up every day...every morning, when I wake up and I am disappointed that the pain is still there, the stiffness, the weakness,...I get out of bed and do what I need to do...to keep going, fighting.

In two years, have you improved enough to give you hope? Where are you at in your healing?
Posted 7/6/2015 1:55 AM (GMT 0)
Girlie: I have decent days occasionally but as soon as I try to go off antibiotics, it all comes storming back literally within 3 days. My worst symptom is hard to describe, and I haven't seen many on here try to explain it. I get very hot, and my muscles tighten up. Then I get this terrible rush, almost like an adrenaline rush, but it's the worst feeling ever. That feeling gives me a giant panic attack and I am unable to relax, so I pace around my house swearing, crying, panicking because of this feeling. I've tried so many things to get rid of the feeling, including muscle relaxers and anxiety meds, but antibiotics are the only thing that has ever suppressed it.

I take my antibiotics religiously and I don't know what I'd do if I had to stop them for some reason. I've been on buhner for 6 months but haven't noticed much from it. If I have to go off antibiotics, the panic attacks will come back and I know they'll be the death of me. I can't put into words how terrible they feel.
Posted 7/6/2015 2:23 AM (GMT 0)
I have a freaky symptom, too...that is difficult to explain...kinda similar though.

It happens usually late afternoon/early evening - almost every day.
I get these nervous system vibrations - upper back - down my left arm...and kind of a pressure/pain in the same area..and I start to sweat - really bad on my back, and also the backs of my hands...and I get anxiety at the same time...the anxiety isn't there because I'm anxious, or worried...it's part of the symptom package.

Do you get this strange symptom even when you're on your antibiotics? Or, just when you go off them?
Why are you trying to go of the antibiotics if you're not symptom free?
Posted 7/6/2015 2:47 AM (GMT 0)
have you considered using the Hansa Center formula Anti tox? IT is designed to clear ammonia from the brain. Amonia is a by product of the lyme and can cause a lot of the brain issues. I have used it for the last 5 moonths and it has helped a lot. It is a unique thing-- and not many dr's understand the ammonia connection.

Also-- can you afford (or finance) to go to the hansa center? They have helped many. Or have you considered doing the whole hansa at home protocol? The crux of it is two of their products- borellogen and anti tox. It really makes a difference and is not like any of the other herbal stuff out there.
Posted 7/6/2015 3:24 AM (GMT 0)
Pete you are young and I have faith that you will improve. If you ever saw the movie "Under Our Skin", the park ranger guy (he reminds me the most of myself)was on abx for 8 years. But he got his life back. He never quit. Maybe you hit a plateau and need to change something you are doing.

My dr. said many times it is 2-3 years of treatment but it varies a lot. I also adjust dosage based on how I am doing and the stress in my life. Never lose faith and hope. Make new goals and plans. I also want to tell you something that I think effects my progress alot. And that is diet. I do a lot of juicing and feel better on a liquid diet. You can add tumeric, fruits and vegetables, protein powder etc. Hang in there. Hugs.
Posted 7/6/2015 8:07 AM (GMT 0)
You have to be persistent in trying different meds and treatments, besides antibiotics, herbs and Chinese medicine, meditate , be positive even when its hard fight the negative emotions remember the mind - body connection its huge when dealing with any disease and recovering. I have switched countless meds/herbs combinations to find something that seems to be working , just keep trying different medicine combinations, dont be afraid to see a Chinese herbalist/acupuncturist..--without that i dont think i would be getting better honestly my Chinese herbalist is a genius . ALSO DIET WITH ME IS HUGE, NO SUGAR, NO BREAD, NO CARBS, NO DAIRY STAY STRICT.. I KNOW its hard to be postive i have battled that my entire treatment but you have to keep challenging your thoughts and KNOW YOU WILL GET BETTER

DazedPete1 That strange symptom your describing sounds alot like Bartonella with the burning feeling..

PS>
I feel you , Im 25, seeing my friends do stuff over the past 2 years and this summer , traveling and having awesome experiences that I missed out on I get where your coming from its tough but I keep telling myself to be positive and get through it. We are young we will get better and we have long lives ahead of us...Coming out of this we will have a great appreciation for life and everything we missed out on wee will appreciate more and more

Email me if you ever want to talk.

Post Edited (myeezy24) : 7/6/2015 2:16:21 AM (GMT-6)

Posted 7/6/2015 8:10 AM (GMT 0)
AND IHL post pisses me off beyond belief a veteran member is saying this....

"You won't be normal ever again lol. You have Lyme disease, and I believe it changes all of us in one way or the other. mental and physical parts of our realities become distorted terribly along the way"

Dont listen to this BS....if you find the right treatment and stay with it , You will be "normal" again
Posted 7/6/2015 2:12 PM (GMT 0)
Whoa, the tension.

While I can understand being upset by such a statement, really, who's to say any of us will ever feel "normal" again? Though, when you think about it, that goes both ways. Will things be the same, won't they?

Either way, do you know, without doubt? Really? No.

Nobody, none of us, can wholeheartedly say either of those things will be the reality with 100% certainty. That'd be irresponsible. We'd lying to each other, ourselves.

Now, I know many will disagree, and for just reason(s) but, to me, hope's a double-edged sword.

It keeps you going, yeah, but, at least for me, when the falls come, they hurt all the more because of it.

Even so, I still hope, but, at the same time, I try my best not to let it deceive me, or others on my behalf. I'm not gonna deny the very real possibility of me not getting better with the assets at my disposal, and being dead a couple years from now.

I don't want that, but.. nothing's promised, but death.

Whether it's a matter of money, access, whatever the reason, health might not be there, for some of us.

There may be a "right" protocol out there for him, for me, but will we be able to reach it?

Maybe? Maybe not?

No promises.

*shrugs*
Posted 7/6/2015 3:24 PM (GMT 0)
Over the almost 17 yrs of having Lyme, I have tried different things and Ayervedic medicine made me feel almost normal until I stopped it. Then little by little the symptoms came back. Finally I got diagnosed almost 2 yrs ago, been on antibiotics and/or herbals ever since and I am seeing results little by little. I just started with bee venom therapy a few weeks ago, it's inexpensive and so far everybody doing it is having great results.

There are so many different treatments out there that will work, you just need the right combo. Don't give up, I will never get my thirties and forties back but now in my fifties things are looking up.
Posted 7/6/2015 3:40 PM (GMT 0)

myeezy24 said...
AND IHL post pisses me off beyond belief a veteran member is saying this....

"You won't be normal ever again lol. You have Lyme disease, and I believe it changes all of us in one way or the other. mental and physical parts of our realities become distorted terribly along the way"

Dont listen to this BS....if you find the right treatment and stay with it , You will be "normal" again

I'm really sorry that you feel this way, Myeezy. I do hope you will change your mind, because truth be told - we won't ever be what we once were. We have to develop new routines, new ways of caring for ourselves and even adopt new lifestyles at times, but we rarely can go back to the way things were and expect to stay healthy. For some it's just a matter of eating better and reducing stress - but those are big changes.

The other thing is you have to have perspective - IHL's case is extreme in many ways, so for her, yes, things will never be the same. I face that same thing - daily. Some of us do, but anyone that believes they can just go back to living their lives the exact way they were, with absolutely no changes to their attitudes or routines will have a rude awakening, I'm afraid. We have to endeavor to at least realize we need to change to healthier eating habits and a lower level of stress in our lives.

Besides, what's normal anyway? I've had a good life, although I've been sick the entire time (since age 7) and I'm still fighting with my health issues, and likely will for a long time to come. But that will not stop me. For me to expect that I will be able to live a life like everyone else around me is just foolish. I never have been and I will never be able to - I have to take very, VERY good care of my body and stick to a very strict diet with very, very few "cheats". I have to support it in ways that others never think about and so on.

The other thing is we have to allow opinions & experience on here - or I'd be off in a heartbeat as well as most of the rest of us. Opinions and experience are almost all we have because there is so little research that has been done on these infections. And everyone's opinion is welcome here - as long as they stick to be conveyed in a "nice" way and are following the rules of this forum.
Posted 7/6/2015 5:36 PM (GMT 0)
Myeezy I just meant that going through something like Lyme is a big deal. And it's OK to have the kinds of feelings dazedpete does. I feel exactly the same. I've come here and complained the same complaints.

I meant it more on a philosophical level. Of course I believe dazedpete will heal. I just think that lymies after they heal especially are a little different because of what we've been through. I meant that as a compliment. I can't speak for anyone else but I know this experience has changed my Outlook on life in many ways. We become able to appreciate the little things on a level that people that haven't been through Lyme aren't able to.

I'm very sorry if that came across as rude or anything. I wasn't trying to be daft. I'm sick too, and I don't always get my words right.

Dazedpete I really only meant that once you are well you will be an even better person. I was trying to somehow say that all of this suffering is worth it because once you are well again you will have learned so much about what happiness truly means.

And I like what was already mentioned, the man from under our skin said all of his healing began after the 3rd year.

Again I'm really sorry that my comment came off like that. I did not mean physically at all. I didn't mean by saying that I didn't think you'd ever be normal again meant you'd never be healthy again. At all. Seriously that was supposed to be a silly compliment and I'm so sorry if it came off as anything otherwise. I hate thinking I made someone feel bad. We all feel bad enough as it is. I'm so sorry :(
Posted 7/6/2015 5:43 PM (GMT 0)
Also just to add dazedpete- I struggle with that crazy weird feeling too. I started taking liposomal glutathione again and after 3 days of it the feeling is still there but it has lessened a little. Which makes me wonder if that feeling is somehow connected to detox.

If your lymph nodes are swollen a lot that might be something worth working on. I've finally got mine to move a little and it's lessening the severity of that adrenaline rush feeling too. Rebounding or jumping or whatever, you have to move to move your lymphs.

I really empathize with that feeling. It's awful. What helps in the tiniest bit is alka seltzer gold, trying to move my lymph, and the glutathione. If I find anything that helps more you will be the first to know! All of those things together only help about 30%.
Posted 7/6/2015 5:55 PM (GMT 0)
oh man, I'm sorry, sending thoughts and prayers your way!! just try try try to keep hanging in there. I hope you can find treatments that will bring you some gains.

I got sick a year after college and while I was thrilled that my friends were starting amazing careers, having families, doing cool stuff, I was bedridden and suffering with terrible pain from some unknown illness trying to get thru without being able to pursue any of my dreams and sometimes I just couldn't help but feel a bit jealous and left behind. I hate to admit to such jealousy as I don't like that quality and find it rather obnoxious but it's the truth. It's what I felt. When I was feeling negative their joy and health and ability to pursue their dreams contextualized the terribleness and prison like existence I was living.

In the end, even if illness is hard (especially these kinds of long indeterminate nebulous chronic punishing illnesses like this), no guaranteed outcomes, you do end up learning a lot and we try and make the most of it and do our best. And building character, I'm sure that's something Calvin's dad from Calvin and Hobbes would say. Suffering builds character! I must be a really gigantic character by now :) but in a way I do believe that, suffering can open the doors of the mind and help build a depth and strength of character.

I hope you can get the support you need as you keep trying to improve your health. While pain and symptoms can make it very hard, I always try to practice gratitude for the little and big things I do have in my life. It makes this whole experience a little easier to focus on what I have, not on what I don't have.

Don't lose faith, don't lose hope, keep fighting. You will get better. Will things ever be the same? maybe maybe not, but I guarantee you will learn things about the world and yourself that you never could have imagined and maybe the path this illness leads you down will have some wonderful silver linings and will push you in amazing directions that you could never have discovered otherwise.

Big hugs!

PS. I still deal with serious moments of doubt and fear and anxiety as I go thru my journey, don't mean to make it seem like I've pulled it all together in my case, ha!

Post Edited (sebreg) : 7/6/2015 6:36:46 PM (GMT-6)

Posted 7/6/2015 6:31 PM (GMT 0)
Haha Calvin and Hobbes! Thx, I needed that smile today, I used to read those books to my kids all the time...

We liked the snowmen...

Anyway, keep the faith and Hope everyone, I do.
Posted 7/6/2015 6:50 PM (GMT 0)
Ha--love Calvin & Hobbs. Have had on my fridge for years the one: "Six minutes to microwave this?? Who's got that kind of time?!"
https://www.pinterest.com/pin/219972763020947778/

And par for this discussion:
"And you know what's weird? Day by day nothing seems to change. But pretty soon everything's different."

https://www.pinterest.com/pin/313633561523865703/
Posted 7/6/2015 8:30 PM (GMT 0)
Hang in there Dazed,

It's tough man. I've been fighting a long time too and it is completely exhausting. Every day is a test of your physical, mental, financial, and spiritual strength. No matter what you have to keep trying to find something that helps you.

I was having a symptom similar to yours with the attacks. The only way I could ever relate it was to liken it to the time I got lost in the woods when I was 14. It's that same panic. Not sure if thats how yours is or if you can imagine that feeling. These come on sporadically for me whether I'm on meds or not. It's no fun regardless what you liken it too. I'm also fighting social anxiety. When I did go out, say to try to get a bite to eat with my wife and kiddo, it felt like the entire restaurant was looking at me, judging me or laughing at me. I was literally becoming a shut in.

I finally took my LLMD's advice and went to see a Lyme Literate Psychiatrist and he has helped me immensely with the above symptoms, plus some of the ones I was being treated for already by my regular LLMD that I didn't expect him to be able to assist with. Added a bunch of meds to my regimen but after my body got used to the pills initial effect of putting me into outer space, they helped a lot. I took my wife out for her birthday dinner last week. First time I have felt comfortable enough outside my house to actually crack a grin of make small talk in a long time.

This psychiatrist is a pretty firm believe in using drugs to relieve the depression and anxiety to free up the resources your body spends dealing with these symptoms to fight Lyme. I really was not a believer in this, but so far, I can tell a difference for sure.

May be worth looking into seeing if there is one in your area. More than happy to pass along the info on mine if we are close.

Keep fighting man. It does at least get better for all of us. For the majority, it gets a lot better. Feel free to email if you ever need to chat.

These symptoms all got really bad for me in the last 8 months. I didn't have these much when I started. My how fitting my screen name feels at the moment :p

Post Edited (Lymeinthecuckoonut) : 7/6/2015 2:33:52 PM (GMT-6)

Posted 7/6/2015 8:56 PM (GMT 0)
I feel the same way lately - I'm about to turn 28 and I figured I'd be married in a house with a decent job and planning to start a family by now...

...instead, it's this terrifying crunch time - I'm on disability and can't afford to go to any doctor with what little benefits I have - the only reason I can afford it now is because I'm using the past due benefits I got for the several years it took to process my disability claim. That'll run out soon and then I'm going to have to quit seeing my doctor who is actually finally helping a bit...
...and the whole thing is kind of terrifying.

I keep praying for a miracle, trying to have faith that by the time I run out of money I'll be well enough to work and everything will be okay...but then for the first time this year I'm faced with the fear of "what if it doesn't work out?" as in...what if I don't get to have that "normal" life?

And I think it's really hard to juggle having faith that everything will go back to normal and also trying to be accepting of whatever comes, to be prepared just in case things don't work out the way I'd like them to.

All I do know is that the stress I'm putting my body, mind and spirit through worrying and being afraid is making my health worse.

I think when things get really hard and really scary the best thing to focus on is yourself, your well-being, your strength and your ability to be okay with and accept whatever life has in store for you.

As for me if I go down, I'm going down swinging!!!
Posted 7/6/2015 9:14 PM (GMT 0)
I'd say hang in there! I actually felt that way myself quite a ways back in treatment but... I feel normal now!!! I just keep hammering away at it though just in case. Every now and then I just take a day or so off of the ABX to get the getms going again. And it seems every time I do that I am making progress.
Posted 7/6/2015 10:27 PM (GMT 0)
Hi LP - wondering how you've been doing.
Posted 7/7/2015 1:16 AM (GMT 0)
I guess my mindset and positivity is the reason why Iv only been treating since March and Iv physically active again and starting to feel great ....hmmm And I also never said you would be normal again with no changes I was saying if you follow treatments and find one that works you have a chance at it , saying that you will never be normal again is a great negative way of thinking
Posted 7/7/2015 1:21 AM (GMT 0)
IHL I'm sorry I guess I took it wrong I read it as how it looked in context as negative I was heated last night I'm sorry I'm over it u understand people feel differently I just feel everyone had a shot at being "normal" again
Posted 7/7/2015 1:32 AM (GMT 0)
myeezy - That is great that you've got a positive mindset and you are starting to feel great.

There are a lot of factors involved with healing - duration of infection before treatment, finding the 'right' treatment, whether there are a number of co-infections to treat, lifestyle, etc. and yes positive attitude.

There are lots of people posting on this forum, who have a positive attitude, and have taken longer than a couple of months to 'feel great'. Let's not suggest that they're not positive enough.
Posted 7/7/2015 2:17 AM (GMT 0)
Ur right girlie I'm not trying to suggest that I just don't like seeing anything negative
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