I haven't posted in such a long time b/c I usually find info on my problems by searching the site..
Three weeks ago, I was fallen into a stupor where I had to go to bed and couldn't even get up...hard when you're in pain all of the time and also have rampant RLS, major systemic yeast, h-pylori that shuts down my digestive system and causes major vomiting and constipation.
I was in a stupor with fevers/chills.......all along with the lyme plus 6 co-fections going rampant in my body.
Could not drink or eat anything which didn't stop the vomiting. I had to keep a bowl by my bed to reach for quickly and this went on for weeks.
Today is the first time I have been out of bed and my balance is bad, I've fallen twice trying to get to the bathroom.
I just lay there, staring at the ceiling most of the day and in a stupor.....most horrible bout of it all since I get sick 18 years ago. It never gets totally better, just worse at times.
This time I cried to die but was not lucky enough to do so....how can a body suffer such illnesses and torture and survive?
I do not treat with abx anymore as it always just made me sicker and sicker. I watch my diet but doesn't seem to matter. Tried rife, but doesn't work on me. I have hundreds of supplements and herbal bottles in my room and had to give up on each of them w/bad side effects.
I was treated by an ILADS orginator, actually helped form the group and when she met with me, had a slew of bloodtests done which showed all the infections and bacteria in my body.
She actually admitted she had never seen a case as bad as mine and it was likely I'd never recover. My private doc agreed and they pretty much gave up on me.
I'm out of money, having spent over $100k on treatments out of pocket, even when I had insurance, over the years w/no results. Now no insurance.
Sorry for such a long post, but I just needed to tell someone how bad I am and don't want this life anymore. Lost my career 6 years ago and have spent all of my savings just living day to day.
I don't believe my lyme plus all of the rest can ever be fixed, Lord knows I've tried.
I'm sorry I'm such a debbie downer, but I get really really mad when do-gooders suggest more.......I can't do more. I don't even leave the house at all and stay in pj's all day.
My doc actually suggested I try depression meds, and I did and guess what? They made things worse too.
Oh boy......maybe I should just delete this?
[ 08-30-2015, 05:46 PM: Message edited by: healthywealthywise ]
Posted by A.G. (Member # 44713) on :
You are not alone.
Shame on the Drs for not even trying.
Just wanted to send you a hug.
Posted by A.G. (Member # 44713) on :
Thank you Ag. Right back atcha....
Posted by Robin123 (Member # 9197) on :
No, don't delete your message - hopefully people will be along to work with you on everything -
I still think the trick is to find what's going to help, and we're all different in that regard.
Just curious - have you seen whether anything helps at all, in any little way?
For example, I find that taking capsules of turmeric takes down Lyme pain for me, and that's a simple affordable remedy, for literally a couple bucks.
I get the turmeric in bulk at the health food store and dip empty 00-size capsules into it and take a couple a day. I feel relief fairly quickly.
Since you say you're out of funds, seems like the most reasonable approach would be to discuss any remedies for the infections that are on the cheap side.
Posted by poppy (Member # 5355) on :
There is finally some more worthwhile research going on. Whether this will help you, or me, or anyone else soon is the question. So, if you find any hope in this, maybe it will get you thru one more day. All we have to do is survive one day. Then maybe we can do the same thing another day.
Feel for you, wish I knew what else to say to be useful.
Posted by shoeless joe (Member # 45835) on :
Im glad you didn't delete,I so can relate to your words.
Ive become a hermit and prisoner of my house
Im tortured day and night almost non stop,quality of life stinks.
What Can we do,press on in hope,turn to your spiritual side.
I SO hear you,Im so worn out,beyond running on empty.
Vent.
Im routing for you and all of us,some day we will be free of this.
Thank you for posting,I hope some relief for you soon enough to catch your breath.
Posted by Theresa (Member # 421) on :
I say a prayer everyday and ask God to cure at least one person from their lyme disease everyday. Maybe some day it will be you or me or anyone of us. Don't give up trying God bless, Theresa
Posted by healthywealthywise (Member # 8595) on :
Thank you...this is not the day to hear of "buck up" "Pray" "there is hope" etc etc
Maybe this is the NOT look positive post, but for ones like me who have tried everything and it hasn't helped ...sometimes, we need to be honest.
I love Lymenet, but for a while, it's turned into look on the bright side of life, try this, pray more, it will get better ............I DID!!!! Every day.
In fact, every day I think "maybe tomorrow will be better". So far, it's only gotten worse and I'm so proud to know there are some people that are so sick, so angry, so defeated thread that it gives US a voice on the site.
Sometimes, the responses I've gotten so far are exactly what we need to hear.....not rah rah stuff that many push so hard.
Sorry again, I'm being honest today. Maybe tomorrow I'll jump on the it'll get better bandwagon.
Thank you friends......always.
Posted by TNT (Member # 42349) on :
Someone said, "Cheer up, it can't be that bad..." So I cheered up, AND IT WAS! Posted by randibear (Member # 11290) on :
lately every day is a day from hell filled with crippling pain.
life sucks.....
Posted by healthywealthywise (Member # 8595) on :
randi..don't want you to think life sucks. LYME& cos, plus other bad results suck.....ok, I'll add in the docs who just steal our money and turn us out w/o results suck. Oh, and the CDC.
Life would be great if we could live it, but my thought is it was stolen from us.
Put the anger where it belongs, ok? Don't want this to be ......oh yeah, now I'm doing it, but I think you get my meaning. :-)
I love all of you who understand, and thank those who want to be uppers to stay their course, but don't push your ways on those who have possibly lived this longer than you.
Makes me think of Yolanda Foster, multi-millionairess who has all the means to travel and buy best treatments. Thought, maybe she might do something but she's in denial.
Sure get your implants out and all is well again, another false positive thought. We've all had them when some treatment says AHA! and for a bit, we feel a little stronger.
She's only been ill for 3 years.
Dear Yolanda, not meaning to bring you down, but check back with me or my next of kin years from now, when that golden castle falls down and your back to square one. Not a wish on my part...just experience.
I worked full time traveling for 13 years with all of this going on until it kept getting worse and worse, fall down collapse after fall down.
I wish everyone better, including myself so it's not thinking bad thoughts for anyone. Good if you beat it....just I didn't and got progressively worse, even when I thought hope was there.
Posted by Robin123 (Member # 9197) on :
I hear you on being honest about how bad it is. I've been there too, a very long time with no answers, and suffering. But I didn't have all the infections you're dealing with.
I just kept trying to find something that would make any of it any better. I didn't want to give up.
That's all I'm asking, is are you sure you have exhausted all remedies? Of any kind? Did anything ever work to make you feel better? Any questions about anything that people think is cheap to do for xyz infections?
May I ask, what infections are you dealing with?
Posted by poppy (Member # 5355) on :
"Since I gave up hope, I feel much better."
Don't know who said that.
Posted by healthywealthywise (Member # 8595) on :
Thank you all for helping me through the first day on my feet....well, in my chair.
I couldn't sleep last night so, like weeks before, I saw the sunrise and thought NOW I KNOW!
I remembered the Exorcist......that movie was preparing me for exactly what these last weeks were like. However, too bad that unlike Reagan, I couldn't levitate off of the bed. That would have been a PLUS.
Love you all.....wish you a better day.....and I'm trying to get strong enough to stand to take a shower and wash my hair.
Maybe in an hour or two? Don't know....now, instead of day by day, I'm taking it hour by hour.
Posted by Phoiph (Member # 41238) on :
Healthywealthywise...
My story sounds very, very similar to yours...I was homebound and hopeless, in agony 24/7 for 8 years, everything made me worse, and docs had given up on me...BUT, I am now 100% well...med-free, living my life again.
NEVER, NEVER give up...you don't know what's waiting around the corner for you.
Please take the time to read ALL pages of this thread, it will describe how I got well, and you can follow others' journey also.
Phoiph? Where can I get one delivered to my house for free?
Please..........the post you references is from 2013. Have we not been through enough? Another success story? I've seen it all. Don't want to be negative or rude, but these kinds of "ads" don't sit well by me anymore. How interested that you list the manufacturer in your thread and link to them. DO YOU NOT KNOW THAT WE ARE SICK AND ARE NOT STUPID PEOPLE?
Yolanda Foster used a hyperbolic chamber in her search too. Maybe she can help send me one to use if you can't?
This is why I don't post anymore. Don't you think EVERYONE WHO EVER TRIED IT WOULD BE CURED AND TELL US HERE?!
Geeze, I give up.
Posted by Lymetoo (Member # 743) on :
Moving to General Support
Posted by LisaK (Member # 41384) on :
quote:Originally posted by Theresa: I say a prayer everyday and ask God to cure at least one person from their lyme disease everyday. Maybe some day it will be you or me or anyone of us. Don't give up trying God bless, Theresa
Theresa, that is so nice. I love it. I am going to start doing the same! (as long as I rememebr to!)
Posted by LisaK (Member # 41384) on :
quote:Originally posted by poppy: "Since I gave up hope, I feel much better."
Don't know who said that.
Poppy, I thnk that was the key for me too. I gave up hope, **but* I still am fighting. that way I am not utterly disapointed in the end on how it ends. I hope. haha
Posted by LisaK (Member # 41384) on :
healthyweathly.... I hear your pain. go on and talk. it feels good to shout it out, no? I love to complain, but my loved ones say enough is enough so I ask god to help me to be silent.
this all sucks. I never even used to use that work 'sucks' until this year. and a lot of other choice words too pop outa my mouth now that never ouwld have even crossed my mind in the past.
this stuff changes a person and change we will. that's ok. just don't give in to it. don't let the evil bastard get you. I been sick for long time too. I get so down some days. but still find a twinkle of 'maybe' in there sometimes - or else I just find mysefl on auto pilot which is fine too.
there is a reason I am here in this way. and a reason you are too. and everyone esle going through this crap, and all the other crap out there like murder and abuse and torture and being lost in a desert for a week with broken legs and crawing for 2 days to get to the nearest water....
I am glad I have my arms and legs and eyes and ears and toungue and lips and nose and hair if I want it. some people dont have those things. or I imagine gettin g my breasts cut off for cancer. or if I were a man- my you know what cut off for cancer, etc..... it does happen. which is worse?
did you se the albino childresn in africa that get limbs macheted off because they are considered good luck charms????
ugh
I htink of all this stuff and I cry and thankd God that I have a bed an dcovers and food and a dog that loves me , even if no people do.
yes, this tremendously SUCKS but what's the alternaticve? give up?? that's not in me. at least I hope not. I have come close, beleive me, but there is a reason I am here. I know it.
Posted by momindeep (Member # 7618) on :
So very sorry for you...I know that doesn't help a thing...your righteous anger shows me you still possess moxie.
Posted by still winning (Member # 44439) on :
healthywealthywise,
Had lyme since 1990, neurological since 1994. Love trucks but sometimes think they're the only real cure. Then realize that the bast...d spirochetytes would probably survive.
So I gotta somehow keep it together through every therapy and setback.
We can all relate. Thinking about you.
Still Winning
Posted by Phoiph (Member # 41238) on :
quote:Originally posted by healthywealthywise: Phoiph? Where can I get one delivered to my house for free?
Please..........the post you references is from 2013. Have we not been through enough? Another success story? I've seen it all. Don't want to be negative or rude, but these kinds of "ads" don't sit well by me anymore. How interested that you list the manufacturer in your thread and link to them. DO YOU NOT KNOW THAT WE ARE SICK AND ARE NOT STUPID PEOPLE?
Yolanda Foster used a hyperbolic chamber in her search too. Maybe she can help send me one to use if you can't?
This is why I don't post anymore. Don't you think EVERYONE WHO EVER TRIED IT WOULD BE CURED AND TELL US HERE?!
Geeze, I give up.
Hi Healthywealthywise...
The reason I'm not offended by your reply, is that I "get it". I've been where you are...8 years of hellish agony, 5 of those years completely homebound. I also "welcomed death".
The message I have for you is that IT IS POSSIBLE TO GET WELL. I am living proof, as I was also one of the worst cases LLMD's had seen. Mild hyperbaric gave me my life back; but for chronic Lyme it must be used frequently, consistently, and over a long period of time. Unfortunately, most people are unaware of this, which is why I try to raise awareness by continuing to post here.
I'm not running any "ad", or selling anything; I have started a grassroots project to help others access chambers more affordably. I do this on a voluntary basis only, and do not accept any compensation.
One aspect of the program involves coordinating with a manufacturer to procure discounts for people, while accruing credit points which are eventually redeemed for chambers that I put into service in the community to be used by people who can't afford their treatment. These people make a donation for parts and repairs if they can.
Another part of the program involves helping people share chambers cooperatively to reduce their costs. Some groups rent a chamber for as little as $5.00 per treatment each.
I know by your comments that you didn't read the entire thread, but I truly hope you do so. I started posting there in 2013 (I waited until I had maintained my wellness for a year), and have worked with many people who continue to post their progress to date. There have been many remarkable and very rewarding results. I also have worked with many people outside of LymeNet.
Do not let the enemy win. It seeks to break your will and make you believe there is no way out. You must consciously be aware of this effect and relentlessly resist it. Keep an open mind to possibilities, because I am here to tell you that wellness IS possible, and life can be amazing on the "other side".
If you change your mind, I am more than willing to help, just ask...
...............................................
(Broke up text for easier reading for many here)
[ 09-01-2015, 03:06 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
While none of us can know if we can get through this, I too want to put in a plug for continuance of effort.
I was told that if I just kept going re sweating on a loaned FIR biomat, I would get through my egregious chemical sensitivity. So I did - I just kept going, and half a year later, one day, that was it - my body had lowered stored toxin levels to the point where I could tolerate incoming ones like smoking, bleach, perfume, cologne, etc again.
I'm not saying it's a good idea to be able to tolerate that stuff! I'm just saying that if we put ourself on a trajectory, we have a chance to get somewhere eventually - that's the concept.
So I would encourage you to examine what Phoiph is saying and to ask questions, etc.
Posted by dbpei (Member # 33574) on :
So sorry for all the suffering this disease has caused you.
Please try to be strong and know that your friends here can help you to get through this very dark period. Although this disease has affected all of us differently, most here understand how isolating and debilitating it can be.
Getting up for a shower today - even if for an hour or two - is a step in the right direction. Please hang in there and keep on posting.
Posted by healthywealthywise (Member # 8595) on :
dbpei, I actually did force myself up to take a shower and wash my hair....my dh also changed my bed linens and bought me new pillows at store. He has been wonderful, but it's so hard for him.
It's why I told him at worst days , I'll be back and one step will be when I can finally force myself to get clean. I had to hold onto the walls of the shower in order not to fall down, didn't get all of the soap off, but I did try my best.
I know everybody, not to give up. But this illness made in hell makes most days so easy to just give up. I'll try when I can and not when I can't. That is my reality.
And for those folks who offered suggestions on "trying" stuff, did you miss that I am BROKE and cannot leave my bed, let alone my home. Guess you can't stop good intentions, but it's hard to see them.
Anyway, I'm still alive today. Maybe that's the most I can ask for at this time. xo
Posted by Phoiph (Member # 41238) on :
"...And for those folks who offered suggestions on "trying" stuff, did you miss that I am BROKE and cannot leave my bed, let alone my home. Guess you can't stop good intentions, but it's hard to see them..."
Let me clarify.
Actually, I didn't "miss" that you are BROKE and HOMEBOUND...but I think you did miss that I was also homebound when I did this treatment, and I now work with people to find creative situations where they can access chambers affordably...and I do this on a voluntary basis...no charge.
In your situation, one scenario might be that you would "house" a home chamber, and team up cooperatively with a few people (possibly from your local Lyme group) who could divide the cost of the chamber rental and share use. (I coordinate with a benefactor that rents chambers for a lower cost.)
Your sole contribution could be that you are hosting the chamber in your home, and therefore you would use it for free.
Possibilities exist.
Posted by healthywealthywise (Member # 8595) on :
I give up.........
Posted by Phoiph (Member # 41238) on :
quote:Originally posted by healthywealthywise: I give up.........
Your choice...
Posted by A.G. (Member # 44713) on :
It sounds like the latest flare up that left you completely bedbound for so long has worsened POTS.
I know that's rough.
Sending another hug.
Posted by Robin123 (Member # 9197) on :
healthywealthy, I hear you in how hard it is - I've been there too, a basket case sometimes, not knowing what to do next.
And someone would suggest I try something, and I did, and I actually responded, a couple times, in my basket case days.
Many people are responding to HBOT. My opinion is, if Phoiph is willing to set you up for free with a trial of a treatment, I don't think you have anything to lose except one more effort to improve things, is my thinking.
We just never know how or whether we're going to respond to a treatment. We can't "pre-think" the outcome. It needs to be experienced. And you would have lots of support here, from people who have done HBOT.
So I would encourage you to consider this free offer Phoiph is making and is willing to help you with.
Otherwise, it just seems to me you'll stay in the same boat unless you can think of other treatment options you want to try.
I just remembered - HBOT does not usually create instant results - it's something that people do over time. One person I talked with said he did 33 oxygen dives, in a chamber, before he turned around.
Well, if nothing's happening anyway, guess you don't have much to lose by trying. As I mentioned, my turn-around for reducing chemical sensitivity took 6 months. Just so you hear the realities of these changes.
I hear you, though, when you say you give up. There's something simple in that, about just being very basic in life, with very simple aims, like get out of bed, get to the kitchen, etc.
However...life is for more than that, so I encourage you to start thinking about solutions you might want to try next. And Phoiph is willing to work with you.
[ 09-03-2015, 02:08 AM: Message edited by: Robin123 ]
Posted by dogmom2 (Member # 23822) on :
hww, I've had this for 20 years, tried every standard, alternative, and controversial treatment. Only makes things worse for me. Have read so much medical literature I should be a doctor.
Tried spiritual means, talked to mystics, shaman, medical intuitives, etc. have asked for help/guidance, or to please let me pass already...nothing
So what I do now is do whatever I have to survive and find the smallest bits of joy each day. My dogs, flowers, way too much ice cream...who cares, I've tried everything I was supposed to, now I'm just doing what I have to to get by.
Finding advil and valium combined helps with my anxiety/pain also.
I'd still like to be better or leave, but just going day to day now. Hope you feel lots of love, support, and understanding in your life.
Posted by healthywealthywise (Member # 8595) on :
Thank you Dogsmom...........I too have now have a 2 year old Berner dog boy I try to care for -- if I don't my dh does but he's not as attentive to a crazy dog's mind. He just wants me up and will come and hug me at night. It's really quite sweet.
He brings me such joy every day along with his toys, offers them to me as incentive, tries to talk to me by barking or what I call "dog talk" whimpers at me when I'm in bed all day and all night. He is a joy to me, loves his biscuits, and yet, he really only wags his tail as my feet hit the ground as if, she's coming back message is to be announced. :-)
Dog and my little black panther cat keep me alive, even when I'm at my worst. Animals know..they really do.. and try to coax me back to life when I'm so bad.
Thanks to everyone who posted to help or sustain me in this really bad time. Don't think I'll post on this any further as it's done it's job to make me feel, I'm not alone and that people who get a bad spell we all go through, are encouraged to keep trying until you can't.
I thank Lymenet friends for reaching out and know, if I get stronger I may be back to enourage you too.
Posted by Lymetoo (Member # 743) on :
Your pets sound so wonderful!! It's a pet desert over here and I sure miss having one.
I hope you find something that works for you. Keep us posted on how you are doing.
Posted by healthywealthywise (Member # 8595) on :
Lymetoo.
Like so so many others here, you are so sweet to me.
"Bless you up and down, all around", as my mom used to say.
[ 09-04-2015, 09:50 PM: Message edited by: healthywealthywise ]
Posted by Glomaker (Member # 46646) on :
Hello Everybody! I'm new to this forum but not to having Lymes. I was diagnosed with Lymes 18 yrs ago after having to drop out of grad school because of the many symptoms that we all have including but not limited to severe joint pain, paralysis on my left side, no energy etc. Prior to my diagnosis I was misdiagnosed with everything from being a hypocondriac to MS.
I was fortunate enough to get treated by a LLD for approx 4-5 yrs with high doses of antibiotics which definitely helped but left me equally as sick because of the "cure".
Since then, however, I have travelled the world in search of something that could alleviate my condition as I was never fully able to be symptom free for extended periods of time. And am happy to share my experience and successes and failures with anyone that is interested. -Glo
(breaking up the text for easier reading for many here)
[ 09-14-2015, 01:57 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Hi Glomaker and welcome - I'm private messaging you about your option to start your own thread if you want.
Posted by droid1226 (Member # 34930) on :
You say diet doesn't seem to help but I promise eating the wrong stuff can make things so much worse, to the point you want to die.
Have you tried an all juice diet? You sound like you have the same symptoms as I do and I finally got so fed up with it and went on an all juice, low carb diet. It's miserable as far as not eating, but it will give you energy back & relieve many of your stomach issues.
I've asked a few other people to try it & many if not all of their symptoms resolved. It's hard because it begins a new set of symptoms like hunger, hypoglycemic issues, irritability, etc....but if suicidal thoughts are coming on, it may be time to completely change things. I've been there.
Posted by GretaM (Member # 40917) on :
Hi HWW,
I get it.
Those self help books said if I said what I wanted my reality to be, over and over again, and visualised what I wanted and how I wanted to feel, that eventually things would pop into place.
Guess what. I did that every chance I could remember for about 15 years.
Then after that didn't work, I every day, said, FU world, and I wished for death. Over and over and over again.
Guess what? That didn't work either.
Those books went in the recycling bin.
Then I tried hypnosis, to help reduce the pain. That didn't work either.
The reality we have, is the reality we have to live with.
It's not fair. It's not humane. And I wouldn't wish it on anyone. But it's the cards we have been dealt.
I truly truly wish, I could help share your burden with you. If I could take a small amount of your suffering and carry it for you, I would. Very much so. Just so you could have a nice meal, a cup of coffee or tea and enjoy it.
So I pray to whoever is listening, (probably just me...), that I can help to carry that load you are lugging around.
And I send you a really nice, warm hug.
I hope you can keep some food down today.
XOXOXO
Greta
Posted by healthywealthywise (Member # 8595) on :
Thanks for the hug, Greta
I'm here to say things got worse and I was throwing up acid for days and night, so bad that my throat closed up completely and I couldn't breathe.....!!!
I finally told my dh it was time to go to the hospital and that is where my nightmare really began.
Too upset to talk about it now and will try to come back later. Just letting it be known that after 3 days of torture, I left the hospital against medical advice........I RAN!!!
Now I'm worrying how to pay for it w/only basic medicare coverage. I told them I couldn't have uncalled for tests and they just kept running them on issues that had nothing to do with my choking!!!!
I'm still so upset, I can hardly type or talk about it. This was 2 weeks ago and I still haven't recovered from the ordeal.
Posted by LisaK (Member # 41384) on :
does the hospital have a financial asstance program? mine does and I am in PA. I get 90% taken off my bills. and it doesn't matter how much money you make or if you hve other great insurance
sorry to hear you had such an experience.
Posted by randibear (Member # 11290) on :
if you want to try cowden protocol I have the first three months. couple of bottles are open but the rest arent. jus didn't work for me but it might help you.
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)