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'Lonely w/ Lyme', so true

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Lyme Disease
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+Lyme
Veteran Member
Joined : Apr 2009
Posts : 1304
Posted 4/24/2010 1:17 PM (GMT -7)
I won't be here much, so responses are not necessary. I just checked in to see what folks are posting about -- I don't know, maybe checking for a miracle?

Also stopping by in case anyone feels as desperate as I, to know they are not alone, even tho we have no answers.

Someone's post said 'Lonely w/ Lyme' and that is so God awful true. 

 I completed 2 months 3500 mg/day Amox.  It was hell and I wanted to kill myself every day, except that I didn't really want to go away and die.  When the Amox was done, I had a lot of relief, esp from pain and the constant buzzing and throbbing.  The anxiety and depression hit at times, but seemed a little better. I entertained the notion that I was cured.

And maybe I am -- maybe I am left w/ the effects, like thyroid and adrenal, which I'm looking to get treatment for.

But I'm also here to tell others who might feel this way -- No, I am not detoxing as I should, and I'm having a hard time even making myself take my vitamins. I struggle really hard just to get thru each day, which all seem like blurs. My hope and motivation for anything are completely dead.  Gone. 

I don't want to die, but I don't want to do what I have to do to survive.  I can't push myself anymore.

Back to the 'lonely w/ lyme'.  Nobody cares anymore. They are sick of hearing about the blackness that overtakes me -- it feels like I have no control over it.  Because it's time for me to pick myself up and get well.  Because other people do that -- they overcome breast cancer and fibromyalgia and all kinds of stuff, they do not go into a black hole like I do. They do their chores and they have some fun and they do stuff for other people.

I have had depression before and it was nothing similar to this. And I have overcome it w/ diet, exercise and medication in between.  But this time, I cannot force myself to do anything productive to help myself. Wallowing, pure wallowing.

I was able to get myself to an attorney to declare Chpt 13 because I had no choice. And I got myself to a chiropractor because of my neck and back pain and the work I was missing because of it.  But haven't yet been able to get myself to another Dr about the thyroid and adrenals, because of all the work I have missed, but I am still trying.  Almost ready.

A major set back:  I have scoliosis which was not severe while growing up -- it was pretty pronounced and you could see it, but I never really cared. I've put up w/ constant back pain my whole life, but it got so bad I could not take it anymore -- w/ the muscle spasms that go from shooting to hot to icey When this Dr showed me my xrays I almost vomited.  My neck is curved in the wrong direction and you can see the squish squashed vertebrae at the bottom of the curve.  Which means the discs in there must be crushed -- would need an mri to see them. Then my spine curves 60degrees one direction and then 72 degress the other way. IN that last curve, the vertebrae look a total squashed mess.  God knows what has become of those discs.

The chiro can help me (no manual adjustments) to feel better, he thinks, by creating some movement between vertebrae.  But I need to do certain exercises, etc or I may face a collapse in another 10 yrs.

Still, the mental and emotional pain is worse than anything physical -- it is unbearable.  And I have nowhere to turn w/ it anymore, nobody cares. 

I am so over it, I just want to be somebody else.  Nobody likes me anymore and I detest myself.  If I didn't have my parents who will need me one day soon, and my kids and my dogs, I know I would just check out.

One day I may get on here and tell you there is hope and that I am well or at least have found a way to live.  I admire the tenacity of those here who are sicker than I am, who keep pushing because they have to.  Because right now, I can't.

In my opinion it is absolutely criminal that we have no reliable tests -- like comprehensive blood tests that are acceptable and paid for by insurance -- that will show the freaking spirochetes if they are in our blood.  Given our medical 'advancement', you know that should be possible.

Anyway, I understand the 'lonely w/ Lyme'.  I am lonely because I have no one with me, to help me, and i'm lonely because I do not even want to be around anybody anymore. I am sorry if this is rambly, but this is f'ing lyme or the results of f'ing lyme and it's not fair and it's not right.

Take care, everyone and keep fighting and holding on.

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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 4/24/2010 9:04 PM (GMT -7)
+Lyme,

You are describing the effects that Lyme can have on the brain -- the lack of motivation, loneliness, desire to "go away" or "disappear," etc. I've had a taste of this too and it is bitter and unpleasant to say the least. I think it is ok to camp out in this for a while, but at some point, one needs to get some mental/emotional fresh air and sunshine. Remember every day is a new day, a chance to start fresh no matter what happened or didn't get done before. Forums like this can also help. Please stop by anytime - you know you are welcome here no matter what is going on for you.

Take care,
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Ginnia
Regular Member
Joined : Nov 2008
Posts : 48
Posted 4/26/2010 12:18 PM (GMT -7)
I am so sorry. I understand about not wanting to take one more pill. I understand the loneliness and frustration that you can't see the end of the disease. I deal with these same issues and they are not fun. Somehow it might help to know you are not the only one.

I used to print out information about the disease to help me know that people are studying it and searching for solutions. Once in awhile I'd hand a paer to my husband so he could understand what was going on - one I found about how it affects the mind was really useful. Maybe leaving things like that around will give some facts to those you see. Even an anti-depressant might help - some specialists say that those also relieve problems with skin burning. You might want to begin a diary and try to put one positive thing you did on each day. Then you can build up. That helps the depression. You may think of other things you do that ease your sense of depression. Try doing those things more and more often. It already sounds like you passed the hard part. You decided not to give up. And you found this forum. You'll like talking to people here.
Blessings and hugs, Ginnia
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rosesinjanuary
Veteran Member
Joined : Oct 2007
Posts : 748
Posted 4/27/2010 8:33 PM (GMT -7)
I do understand. It is lonely . I have chosen to tell people I am well. (I imagine they wonder why I am a mostly recluse don't work and am always in a robe) but never the mind i do not speak about it to anyone except hubby and journal. I have found this to be easier. I don't have the scoliosis problem my heart bleeds for you . I am a very spiritual person and would like to pray for you +lyme. Please do not detest your self you have a lot to give. Its fine (and healthy ) to realize what we have lost and grieve for it, but with time it is my hope people either get well or change their lifestyle to acomodate the parasite. I have chosen to do the latter. chapter 13 had to be stressful but thank God u did it it must take some stress of. I do not know what tomorroe's finances will bring, I just try to live one day at a time and when I'm clear headed go over the budget and see how we are doing.. So far we have been able to keepour heads above wate but that probably can't last forever. I refuse to entertain the negative possibilities I know we are not spending foolishly so we are doing the best we can. That's all we can jhope for in all areas of our lives not just the disease
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Kodak
Regular Member
Joined : May 2010
Posts : 74
Posted 5/14/2010 8:05 AM (GMT -7)
I guess we all agree about the lonliness. So good to be lonely together. :)
It feels almost like your possessed, right? When I have flare ups I feel like I'm losing my mind. When it
passes, its a total change. I keep saying next time, I wont let it get to me. BUt its a physical thing.
Although it effects our emotions.
Hang in there. Maybe read some of the detoxing posts. The epsom salt baths may detox you enough to clear your head and
help your mood. Seems to be helping alot of people.
Hang in there. We are all in the same boat.
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+Lyme
Veteran Member
Joined : Apr 2009
Posts : 1304
Posted 5/14/2010 8:39 PM (GMT -7)
I thought I posted this this morning and looks like it didn't take.  So apologies if this is a dupe, just delete it.

Hello Kodak -- you described exactly how I feel.
 
It's so sad and I'm so sorry that anyone else feels this way, but also helps to know how that it came w/ that little gift  of poison that little monster traded for a bit of my blood.....
 
Feeling so mentally ill is kind of the hardest part, because you can't seem to take control of your thoughts to try to boost yourself. I can't describe how my head feels at those times -- you probably know it, too -- it's undescribable and unbearable.  Way too often, when I have decided to try to ignore this and keep going, I find myself standing frozen, in one spot, as if paralyzed -- well, I am kind of paralyzed -- w/ my mind in such a jumble I can't even figure out what to do or how to think.  It IS like feeling possessed.
 
On the upside, finally -- I have an appt w/ a REAL, highly esteemed (so I hear) Lyme Dr the end of June. (I have posted this before) He is an IDD who specializes in AIDS, working mostly at the hospital. He then takes on as many lyme patients as he can -- I was on his waiting list for over a year. So I know he's not a quack and he's not in denial about Lyme either.
 
And I have a very kind and understanding chiro. He cannot fix my spine and he cannot manually adjust it, but is doing what he can to try to provide relief. And I seem to be getting some.  Also gave me a bovine adrenal supplement that we are trying.
 
So everyone, keep praying and maybe help will come to you -- even if not as soon as you want it to.   Tell you what, everyone here is always in my prayers. Like I said before, this feels criminal -- that w/ all our medical progress, this disease is still so mysterious and controversial, along w/ the treatments.
 
Oh, and for thos recommending antidepressants:  I had been on a low dose of antidepressants for quite a few years. A very low dose of xanax, too, from time to time to help w/ sleep. Eveything used to be manageable.  Strange -- before I had any idea that I had lyme, my depression and anxiety suddenly worsened and it was BAD.  Dr ended up tripling my meds.  (because of the pain, as well)   2 yrs later, I realized (when I learned I had lyme), that this was all within a month or 2 of that tick bite.

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Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4644
Posted 5/15/2010 8:08 AM (GMT -7)
Hi everyone,

Not only did I feel so alone when I was sick, the lyme did affect my brain and I was acting crazy.  Lyme rage episodes, cursing at my family, everyone called me NUTS!  And I was..  

I don't tell this story very much but once I actually planned on doing away with myself.. I was going to drown myself in my inground pool during the winter time.. that's how depressed I got from being sick for so many years..  I know that darkness that comes with this disease so very well and I will never forget it...

Please never give up, if I could get better and stay better for this long, anyone can..

And guess what?  Getting better was terrifying for me.  I got so used to sleeping around the clock, wearing PJ's all the time, that when I got better I didn't know what to do with myself!  I was really scared.  Too many years passed that I couldn't go back to the company I used to work for so I became creative and started my own business.   I don't miss the office politics but I still miss my old friends at my own company not to mention that I enjoyed getting dressed up every day, etc.  

So my entire life changed and there are some days that I need to remind myself that so much good came  out of getting infected, I learned about botanicals, detoxing, diet, things I never knew before.  Prior to getting sick, I would have never bought books on lyme disease, no way!  I would have never bought books on detoxing.    I never knew the benefits of hydrogen peroxide (I thought that was to dye my hair!) as well as epsom salts (I thought that was for ice on my driveway)..  I knew nothing! 

But best of all is I love helping others...

Okay, enough...   rolleyes

Denise

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Kodak
Regular Member
Joined : May 2010
Posts : 74
Posted 5/17/2010 11:33 AM (GMT -7)
HI Denise,

So glad you are doing well. That is sooo good to hear. I'm dying to know what you are doing now.
I've always felt that my job was not right for mem was a little toxic for me and always felt disappointed in my work and
that maybe I should do something else. I am also a creative person, was an art major, I am a singer,
I like to decorate bird houses, anything crafty, etc. I thought maybe this illness was a way to move me to a new life as well.
Sometimes I think things happen for a reason and if we go with the flow we will find our true purpose.
I would love to know more about how you started you own business. I would love to do that. Wouldnt know where to start.
If you want to reply to my email, that would be fine.
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rosesinjanuary
Veteran Member
Joined : Oct 2007
Posts : 748
Posted 5/17/2010 1:30 PM (GMT -7)

plus lyme

?

u are right it is criminal that the lyme tests are sooooooooo unreliable because in mi opinion u should be on disability.  have u tried?  I hope u at least think about it, i would think too along with the scoliosis u would stand a tremendous chance,  i think i'd  h ave qualified but i don't have  current work credits to qualify when i got sick in 96 i never dreampt it was going to stay forever, so  while i have enough credits they are not in the last ten years (duh i was sick, oh well)

omg i will ask what is hydrogen peroxide for? aside from cluttering the closet. 

it is s o nice to have u guys i will not talk about mi problemswith health to people.   Ihad a good day fri cleaned (caught up on crap i did not do cz i was sick) slept saturday but did go out to eatwith hubby knowing that if i did and we went to church sun i'd be sick i did both anyway and im sick,  but the church was worth it if i can go to church my whole week is better i am  less apt to kill someone, or lose mi temper, today is an ouch day my left calf muscle wants to cram'p? its done it before i don't know what it is but it hurts too walk plus mi back is on fire,  ha see i save the best of me for u.  when i am like this i don;t pick up the phone from mi "healthy" friends i dont have it in me. i pick up for kids  hubby and mom.

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