As many of you know, I have been doing so terrible lately.
Babesia has been hitting me hard with air hunger attacks lasting hours lately.
Bart has been kicking my butt with gut wrenching, all day anxiety as well.
I have been aching all over for some time now and can't get warm. My head hurts from the inside out and I can't concentrate or think straight most of the time.
My brain tremors in my sleep only to awaken me while I'm sleeping. Non-stop Vertigo has haunted me for the last 5 months now.
Many more symptoms..........
I started back on Rife and Salt/C and the Herxes were causing emotional baggage that I couldn't handle. I was begging for god to take me and even thinking of how to do it myself.
Then my 7 y.o. princess daughter awoke with 103.3 fever and was aching all over. The fevers have come and gone all day with Tylenol, but something hit me as she rested and I was sitting here all alone in the house. Not sure how or why it happened, but I said enough of this crap. I am going to start living.
I can't sit around anymore and look at the walls. I grabbed my Ipod, which has sat with a full charge for the last 3 months, and I put it on and then I put on my shoes and got on my treadmill for the first time in over a year. At first I thought of just walking, but I said, forget it. If I can make it through all of the above symptoms, then I can sure as hell run a little bit.
I don't even care if I overdid it, but I almost ran 2 miles. I walked only 1 of the laps. My Heart Rate got up to 178 and I was sweating all over the place. My body was saying I should slow down, but I kept telling myself this is nothing compared to the symptoms we all go through each and every day. Perhaps some die off came out of my skin. My daughter told me I stink like pee, so it's something :-).
Bottom line: I've been sick, but I've also been having a pity party for myself way too much.
Don't get me wrong, as I still need your guys support :-), but I'm gonna start trying to do everything that I can to start living a little.
This doesn't mean that I'm going back to work tomorrow or even for a 2 hour drive, but I am going to start doing things to keep my busy and active, obviously not during an air hunger attack or while the coffee enema hose is attached, but when I get some down time and not struggling so bad as was the case today, I will start getting off my butt and doing whatever, anything that doesn't have to do with Lyme.
I have let this disease consume me. I have become the disease. I will still post here, but I will not spend my days in front of the computer anymore.
I'm all sweaty as I sit here and type as I'm exhausted to take a shower, but I will find the energy and get myself in there in a few minutes.
The electric razor is going under the sink and I'm bringing out the lather and my straight edge. I will change my underwear every day now and gel my hair. No more hats.
We all have different cases, but my family needs their Dad back, and I'm determined to give them just that !
LT
[ 10-19-2009, 08:29 PM: Message edited by: lymetwister ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
good for you.
i've been there and know what you are saying.
try to listen to the little voice inside that helps you know how much and what to do and not do.
my thing recently has been going to the barn 3-4 hrs most days. some say it is too much...but for me it is working.
good luck with your plan-maybe come on once a week and let us know how you're doin.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
This is the best thing I have seen all week!
Good for you!
Posts: 5 | From santa cruz, ca, usa | Registered: Sep 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi, I hear ya!
Just want to say that whenever I do that type of thing, within the next day or 2 I have terrible Post-Exertional Malaise that can last anywhere from 2 days to 2 weeks. But I do it anyway because I want to remember what it was like to do the things I used to do.
Hopefully, your symptoms are not like mine and you can exercise and improve.
Good luck. Believe you can be well, but listen to your body. If you are pushing too hard. Stop
Best Wishes
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
A great attitude, this made my day also. Keep on keepin' on. God bless you.
Posts: 374 | From United States | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I hope you kick those bugs ###es all over LT. I hear you loudly. Good for you. PLEASE be careful though. I tried a mini-exercise program four days ago and I literally am WIPED OUT the last 3 days. I mean useless.
I can't get off the couch barely. I feel like jello. I can't work at all. I can't walk straight. I feel like someone drained every last bit of energy out of my body and my arms and legs weigh 500 lbs. It's horrid. I'm kind of frightened so little did so much.
At the same time, i've absolutely had it and am ready to try to hit Babesia. I've done 'baby treatment' too long. Slivers here, 1/4 pill there. The turtle wins the race.
Thinking to myself, oh maybe slowly I'll win. IT'S NOT HAPPENING. There is no easy way out of this when you're far into it. That's obvious to me. I can either watch my whole life go by doing nothing or try harder.
Be strong, but be careful. We get one shot at this.
Just the fact that you were 'physically able' to run two miles says something to me. That's unbelievable given the situation you've described over the year.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
This made my day too -- sometimes I think I just sit around and obsess about every little ache and pain and forget about living my life.
Nice reminder! thanks.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yay Gary! You look good :0),,, How in the world do you feel right now???? Hopefully de-conditioning was part of the puzzle.....rock on friend.
Posts: 3975 | From usa | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to see you feeling better. You might want to check out some great suggestions here for getting over those mountains:
posted
Glad to hear this I know how bad you have been struggling as I have too. I have been praying for you and me and eberyone struggling right now. I hope things get better soon!
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
posted
I think all of us take advantage of our good day, or moments, whatever it be.
If I have a good day I am busy doing everything left undone from the week before, working well up in to the night, then busted the next day.
I was bedridden 9 years. Between the pain and sleeping I had some free time which I spent praying and crying. I thought of suicide, yes. I asked God that if he couldn't heal me, take me. I'm still here for a reason and out of the bed, not a lot of improvement but inching along.
Lymetwister, I about cried when you mentioned the inspiration you received from your 7 year old daughter, she is your reason to keep living, she needs you and you need her.
And on that note -- children -- I have the utmost respect for all of you that have small children to contend with while suffering this tormenting disease, I don't know how you handle it all.
I have days to where even the telephone ringing will make me cringe. I don't know if it's the noise or thinking it could be someone wanting me to do something I'm not able to do.
I've had to learn I can't go back, only forward and through it all my body dictates my day. I wish it was the other way around.
Posts: 245 | From Texas | Registered: Jul 2009
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Great video, you made some real profound statments that ring true.
Way to go!
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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WildCondor
Unregistered
posted
Awesome! Great to hear you talk this way and to hear the determination in your voice!!!
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Stay strong. You are an inspiration.
Posts: 423 | From Upstate NY | Registered: May 2009
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Shosty
Unregistered
posted
You can have the same attitude and express it in ways other than exercise, if need be. Getting involved in life comes in many forms
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posted
Good for you Gary! How are you doing today?
I didn't realize you are GaryRN (or Gary1RN) until I watched the video.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Well, I definitely did overdue it. Even still, last night, I went around and cleaned much of my house.
Funny thing is that at about 10pm, I couldn't keep my eyes open, went to bed and woke up at 1am with bad anxiety, my head killing me, etc. Had trouble getting back to sleep, and woke up at 7am and feeling very confused, but with no brain fog.
Everything was hurting me all day long, even areas that didn't include the running on the treadmill and the Epsom salt bath did nothing. Had bad air hunger this morning. My usual migraine and inside head pain has been an issue all day.
Nevertheless, I put my son in the car and ran a few errands (got him his holloween costume and even went to the mall and got him a pair of tennis shoes). All the while my my anxiety was through the roof, head killing, aching, cold, etc.
Even stopped and picked up some lunch for everyone. Came back home and watched the Ravens Game after I took a 2.5mg Percocet which I rarely take.
Very relaxed now and Percocets don't usually do this for me.
I will Rife tomorrow after sending the kids off to school.
Rife always fatigues me a few hours after doing a session. Perhaps I'll get some extra rest before the big Herx, which is almost guaranteed to come.
I'm debating going from 30 seconds to 45 or just a minute on each frequency.
I need to knock this down. I use to Rife weekly and tomorrow will be a week since I restarted.
The IVIG set me back 3 mos. or so, so I have some catching up to do. Don't worry, I won't overdue it.
I havn't cried yesterday or today, so perhaps I'm on to something. My Heart Rate was actually a little better today while out and about. Perhaps retraining the Sinus Nodes is needed here. I will walk the treadmill and run it when I can.
I did stay off the computer all of last night and today until now, so I think I'm in the right direction.
Kind of funny as when I looked at my options, I only saw 3.
1. Was to continue to live this way 2. Was to end my life 3. Was to go back to the ER
I never saw option 4, which again was to start living the best I can with all of this crap. But Option 4 seems to be the way to go while treating. It was there in front of my eyes all along, I just didn't see it until I saw my daughter feeling sick, which btw, she is much better today.
Thanks for all of your support guys. We will beat this thing in the end.
P.S. I would like to see someone post in this thread that they too, are going to reclaim their life. Please join me in my own recovery with yours !
Oh and, it's Gary, not LT from now on.... :-) Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Shosty
Unregistered
posted
Topaz, the smile I put in there was supposed to signal that he would already know that. I didn't mean to offend.
I just put that in there in case he felt like a train wreck the next day, which is what happens to me when I get one of those uplifting feelings that I will exercise more.
I reclaimed my life many years ago, by doing short-term projects in the community that make me feel useful. There are times when I can't do it very well, and times when I can. Another thing that has helped me is taking a course at school, when I can afford it.
Everyone has their things. But for me, exercise is a tantalizing prospect, and feels good and empowering the first day I do it, and I get all excited, and then I suffer for days, and can't do it anymore. I am trying to do tiny, moderate amounts just twice a week.
So I was just trying to contribute to softening the blow in case that happened to lymetwister the next day, in a friendly sort of way.
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quote:Originally posted by pab: I didn't realize you are GaryRN (or Gary1RN) until I watched the video.
I didn't either!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Way to go Gary!
When I was diagnosed with Crohn's it was a disaster that I had to quickly resolve.
My wife had Lyme and we just could not afford to have two sick people in the house. This gave me the inspiration to put my nose to the grindstone and find quick and effective treatments to put my disease to bed.
I succeeded in under a year, using my choice of treatments. The easier of the two disease was not an issue any longer.
It really helps to forge ahead with a better reason than to help yourself. Most all of us have more important reasons to get well, than for our own sake. Many people depend on us.
Good Luck
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Quick Update:
I Rifed this morning for Lyme, Babs, and Bart. I felt the Herx come on within the hour.
After some heavy detoxing, many things cleared especially the gut wrenching anxiety I have been having. Didn't need a Xanax all day.
Fatigue hit me hard, but after a late day epsom salt bath, I was able to take my kids to the skateboard park.
Still with tons of symptoms, but pushing along in the right direction.
I swear this disease is like a Sci-Fi disease. I can never get over how bad the symptoms can get and yet a Dr. will tell you that your healthy and there is nothing wrong with you or that it's all in your head.
Some say they feel like they are living hell on earth, and those are the ones without Lyme. I say if you have Lyme and god decides to send you to hell, you should get reduced time for time already served.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
AMEN
quote:Originally posted by lymetwister: Some say they feel like they are living hell on earth, and those are the ones without Lyme. I say if you have Lyme and god decides to send you to hell, you should get reduced time for time already served.
Gary
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
yes, good for you gary!
folks when you go there, RATE gary's video; only 4 so far including mine.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I couldn't reclaim my life if I tried. My infection owns me whether I like it or not. I've fought back violently, valiantly, and with a perseverance that Rocky Balboa would applaud.
The reality however is that I'm forced to live within the confines of what the disease permits. It's a prison cell and I can smash my head against the bars all I like and act like I'm free by telling myself over and over with positive affirmations that I am free and will be free, but the truth is, I don't have any evidence that I will get better, and positive affirmations (I think I can, I think I can) doesn't guarantee anything.
The only thing that happens the moment I add more stress than I already endure is increased symptoms which evolve into a full blown critical disability. It "stacks" upon itself. If I push and get sick tomorrow, and then rest for a week and then push again, it "will" build up over time and I'll become more and more debilitated.
So what does this have to do with reclaiming life? I put all my focus into my recovery. Some call me pathetic or obsessed because it's on my mind during every discussion and all through the time that I do research.
No matter which choice I make, I lose in the short term. However, I will keep doing the work necessary to recover. I increase the probability of recovery by doing things that are conducive to recovery and pushing myself to leave the house, go to classes, go for walks, hang out with friends outside the home all are a big damaging disaster for my individual body.
If it works for others, great, go for it. But pushing myself is dangerous and not appropriate.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Your mailbox is full. I was going to post this response:
Gary, I have my rife machine but have never used it. I won't go into all the reasons, but I do plan on using it eventually. I've not investigated Salt C to significant degree. Sorry to hear the IVIG was such a big setback.
I'll keep up with what you're doing. I know Rife works well, I had a friend who I followed for two years. All he did was Rife and Colestapure (Just a supplement for detox, one or two pills of plant sterols).
He went from about 45-50% to 95% function. It took him the exact time frame predicted by typical Rife therapies, about 6 months to see "ok" results and as he hit 18 months he felt much much much better. The first month or two was brutal. 3rd month "bad, but better than second." and forth was not well, fifth was "blah." etc.
Rife therapy, from my understanding really really really should not be pushed fast. 2 weeks is the apparent gap for people up until the herxheimer reactions begin to become less and less -- then time frames move to 12 days, 10 days, and eventually daily for brief periods of about 15-30 mins at most. Aparently herxheimer reactions aren't simply a die-off, but also heavy metals are involved and immune function is suppressed when done too quickly. It's hypothetical but it's been suggested that Bb binds to various metals, including Mercury especially.
Any particular reason you do it more often?
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Spring Showers took the words right outta my mouth:
RIGHT ON
Do what you can with what you have. I am with you.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Metallic Blue, ditto to your comments about what is right for your body....I am exactly the same way.
To interact, further my education or simply being within the chaos of society...even to go to a doctor appt. sets me back weeks. Yes weeks.
I am one of the most stoic poeple that you might ever meet but reclaiming my life requires all kinds of constraints. I don't like them, but never the less, they are what they are.
Nothing p/o's me more than to hear someone tell me " think positive, get away from your illness, etc.. To me it implies that I am somehow weak and malingering, nothing could be further from the truth.
I do what I can and that is being pro-active in my health care, research and healing.....we are all so different.
"I am what I can make work"
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
You guys are so inspiring! I know people who get a cold or a headache and stop their lives completely until it's gone.
I always figure, even if I'm sick, I still have to feed the dogs and scoop the cat litter, as well as feed myself and do laundry. It helps to get outside myself like that.
I try to not let the disease get in the way of my life, but as you all know, it doesn't always work that way.
My mom is amazed at how I'm handling all this - I'm calm, do research and get on with it. I tell her, what else am I supposed to do? Crumple in a heap? I do sometimes, and that's ok, I wouldn't be human if I didn't, but then I get up and get going again.
I'm proud to (sort of) know you all!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
Way to go! I know all about the evils of over-doing it but...still..as a long distance runner I can relate to your story.
It sounds like you NEEDED to do that! Hope you had some good kick butt tunes and were able to sweat out some of the physical and emotional toxins.
You are so right - you can't stop living and some days you just need to say enough is enough and do exactly what you did. Yeah, you may feel bad the next few days but you will feel bad from a abx herx anyway.
Thanks for sharing that - now I think I will get off the couch and go for my run and sweat out some of the crap...
Posts: 376 | From New Jersey | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I try every single day to reclaim my life. I do whatever I am able to do "that" day. Some days I win and some days I loose; but I never give up the fight.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
MetallicBlue,
Rather than Rife for 2 1/2 minutes, I'm splitting up my sessions to see how hard I Herx.
i.e., I started with 30 seconds, and had a small Herx, waited a few days, then did a minute, actually didn't Herx too hard, but felt better and was able to get out with my kids for a few hours the same day.
2 days later, I added another minute, which would be today.
Rather than waste 2-3 months to see where I can pick up from (as I had my Rife on hold for 3 mos. due to the IVIG, but was Rifing prior to this) so, I'm trying to kind of pick up where I left off.
I was Rifing once per week prior to stopping and thats what I will continue to do and work my way up even further, adding frequencies as necessary.
Todays Rife session got rid of my headache and much of my vertigo, but in return, it gave me bad anxiety.
Hope to get it all in control in due time. Antibiotics don't agree with me, so this is the way I chose a long time ago and with the Salt/C.
I have the Salt/C on hold right now, but will add this back in very soon down the road.
My personal opinion is that Rife hits Lyme whether in cyst form or L-form or in it's normal state. Just because the shape changes, the frequency stays the same, but what do I know ? :-)
Gary
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![[Smile]](smile.gif)
I hear you loudly. Good for you. PLEASE be careful though. I tried a mini-exercise program four days ago and I literally am WIPED OUT the last 3 days. I mean useless. 
![[bonk]](graemlins/bonk.gif)
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