posted
No more sleepless nights, no more days filled with meaningless suffering, no more moving mountains to fix medical problems that don't want to be fixed. Everybody's got a breaking point. I've been doing this for 14 years, and I don't want to do it any more. Enough.
Lyme, parasites, and c. diff. are out of control. I'm probably headed for a fecal transplant with the c. diff., after 4 rounds of antibiotics haven't worked, and the transplant could be a game changer, but I don't care any more. I can hurt, or I can die.
GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
GVS
So sorry for all your sufferring. Just heartbreaking. We certainly understand and can feel your pain.
With the recent flurry of activity surrounding this horrendous disease, please believe that finally better treatment of Lyme patients is in the near future.
We have to believe this. . . It's all we have. Cling to it as a lifeline. Hold on. Stay in the battle. You have been fighting for so long,
You deserve compassion, respect, and validation. Your loved ones need you. We need you.
There are millions of Lyme warriors living a good life. I so want you to be one of them, back on your feet again.
Keep treating, keep fighting, just keep standing. Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
GVS,
As BB said above... I am so sorry for your pain. It must be awful. No one should have to deal with it like you and so many others of us do.
If it will help, and it helped me when it was written and posted here...
Someone wise once wrote:
Please help my liver and kidneys -- they work a lot of overtime and don’t get any vacation days
Please help me tell when I’m hurting because I’m having a herx, as opposed to some other reason, and to have an abundance of affordable, effective detox methods to deal with those herxes
Please give me the perseverance to run a marathon that lasts years, if not decades
Please give me the discernment to recognize negative emotions that are caused by pain and illness, and the ability to disregard those emotions as having a basis in toxic overload, not reality
Please give me the ability to sleep at night despite the cascade of negative things that are happening in my body
Please help me remember that even if today is a bad day, tomorrow will be different – it might be better, and it might be worse, but it will be different
Please give me the wisdom to deal with obstacles in my life directly and constructively, instead of engaging in behavior that is escapist or compulsive, like binging on food or cheating on my diet
Please give me the strength to stick to my daily regimen, even if it seems relentless and all-consuming, and not to resent that regimen, even if it doesn’t give me as much of my life back as I’d like it to
Please give me the restraint not to kill originally well-intentioned family members whose financial power over me has corrupted, and turned into despicable monsters, who don’t care who I am or what I feel as long as they can bend me to their will
Please take care of the people who genuinely care about me, there’s enough difficulty in their lives from having to deal with my lyme-crazed moods
Please give me the common sense not to freak out and think that my wife is always on the edge of losing her health every time she catches a bug or has down time.
Please give me the willingness to forgive an endless stream of doctors whose limited training and experience leaves them ignorant of how to diagnose Lyme accurately, too arrogant to consider the possibility that disease can exist outside their understanding, and eager to dispense psychiatric diagnoses as an alternative to admitting the truth: “I don’t know.”
Please help me not to be short-tempered with doctors who do see what I’m struggling with, and who are trying to help me, because the partial help they offer doesn’t touch the majority of my suffering
Please give me the ability to recall positive experiences from my past and replay those moments in my mind, like well-worn records, as an alternative to having a present that’s worth living
Please give me the ability to work through my grief at the many things this illness has caused me to lose, to be grateful for the limited life I still have, and to have realistic hope that things will get better, even if it’s in ways I can’t anticipate
Please don’t let soul-withering loneliness destroy me
Please let me be able to do some of the things I want and need to do, and to have at least a little, if only a taste, of the life I’d like to have; a partial life is better than no life
Please give me the perception not to think of myself as a small person because I live a small life
Please give me the ability to learn, so that with each passing month and year I slowly but steadily come to manage my problems more effectively
Please help me preserve what’s left of my mental well-being, I’ve worked hard to get this far and am not ready to give up yet
Please give me the courage to face things that don’t seem faceable
Disclaimer: Our Lady of Perpetual Die-Off is a fictional character I created for purposes of satire, and bears no resemblance to any actual religious diety. This post is not an invitation to religious members of this board to wax fervent.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, that was your post from last May. It is beautiful.
I am hoping you can grab hold of that strength once again and stay with us while we battle the bad bugs together.
Since prayers aren't going to be appropriate here... hey, I'm not proud!
I will do the funky chicken, put green leaves on my head and dance under the full moon, go down to the river and torment the gators with marshmallows in my ears, or whatever it is you think might help us both feel better. You name it!
And I'll bet you haven't had an offer like that in a while, eh?
A little smile? Or do I just get a big punch in the nose for that one?
Please let me know and lettuce us all know how you are doing... ok?
We do care! Even if some of us can't seem to behave ourselves sometimes... like now...
posted
GVS, I have been where you are. My heart hurts for your. There was a time (and sometimes still is) that I thought I couldn't go on anymore.
It has gotten better. I'm hopeful it will get even more. Keep fighting to find what works for your body.
We are here. I loved tincups posts. She is good at making you smile when it seems there is nothing to smile about. She has saved me a few times too!
Keep looking for answers.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Wow GVS ! You wrote that ? Amazing !
That is the most beautiful and inspirational post I have ever read here on lymenet. I'm coping it and taping it everywhere in my house.
Thanks Tincup for posting and for reminding GVS how truly special he is.
As you struggle GVS. . , Please find solence in knowing your words are helping many. You have a true gift. A genuine purpose in this life. Thank you
Posts: 2977 | From Florida | Registered: Nov 2016
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
GVS I feel just like you.
I am so tired of this sh*t
I am suddenly all better or so it seems - for a week. or a day even and AAAHHHHHHHHHHHHHH what a vacation! then it all crashes and im terrible again
and no one understands. not friends. not relatives.
I keep telling my self "one more day, If I can just get past this one more day"
I don't want to diereally , but some days I think about it a lot. the relief it would bring. and to stop al lthe pills, all the drs, all the reading that goes nowhere.
but, to me I think it is prayer that keeps me afloat. each morning I ask God to get me through othis day. just this day.
sorry you have it bad. I hope you can find a good reason to keep fighting.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey GVS,
Just checking back on you to see how you are doing. Please let us know how you are and how we can help you. We do want to be there for you and we do care.
posted
Still here. Yesterday was somewhat better than the day I made the post. I have no immediate plans to give up. The fight is continuing on multiple fronts.
Thanks to Tincup and everyone for the support and understanding. It makes a difference.
I wish I could say my attitude had become positive but it hasn't. After spending the last two years losing all the ground I made in the previous 12, the primary reason I'm here is that I don't know how to walk away from my wife's unconditional love.
Maybe I'll get better one day, but at this point, the odds aren't in my favor.
GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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posted
P.S. -- Tincup, my personal favorite, when it comes to dancing under the full moon, is to wear a grass skirt; despite the fact that I'm male, the flowing skirt complements the naturally graceful way I move.
GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh GVS!
So good to see you! Thanks for posting. I was very concerned about you! You sounded, as my momma would say... lower than a snake's belly!
As for keeping a positive attitude, that's for chumps!
When you feel bad, you feel BAD!
You just, as you already know, have to hang on to that little something that keeps you going till the next "break" in the awfulness of Lyme.
And it is hard! Really hard to do. It's not a life style any of us would choose for ourselves or even for those we think suck!
Well, maybe a bit of it would be ok for the IDSA toads, don't you agree?
When it gets to be too much for me I force myself to think about the last time life wasn't so totally miserable. I try to remember the one thing I did that gave me some pleasure and I didn't have to act like I felt good doing it.
Yes, those times can be few and far between (sometimes years for some of us), but they are there in our little brains buried deep if we try to remember and then hang on to them.
And it's kinda like getting wet when you don't want to be.
The good thing is if we wait long enough we WILL be dry again!
POOF! Just like that!
And no, Hallmark still has accepted my application for employment even though I keep sending them samples of my home grown gems! ~smile~
Anyhow, I can now breathe again. And you can design a "what's next" plan to get you going in the right direction. You are a great researcher so you have a big advantage there.
If you need help with any of the "what's next" plans please just ask! I'm no genius, but once in a while I have been able to bring a sickly plant back to life.
I am anxious to try that same method with humans, so you could be the guinea pig if you want!
However, federal regulations will not allow guinea pigs to participate in my special experiments if they are not "up to par".
So, I'm sorry to inform you... you'd have to lose the grass skirt and not be dancing in the street under the full moon all the time, all the darn time like you do!
You got me laughing out loud just thinking of that! Funny you!
Hang in there dear one! It will get better! I know it will. I can guarantee it.
My longest, hardest struggle is with intestinal parasites. If you know of any information resources that might help deal with them, I'd be interested in knowing about them.
Most of the antiparasitic agents I've tried either bother my heartburn (gse, Olive leaf extract, berberine) or lower my abnormally low cholesterol even lower.
The few agents that don't do that (oregano oil, garlic, and a few others) I'm allergic to them at this time.
The catch-22 has always been that my digestive problems keep me from taking the things I need to resolve my digestive problems.
Any input would be appreciated, GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
His name was Billy.
He is the reason I am lousy in algebra.
He had broken it off with his girlfriend (FINALLY!) and one day he passed me a note asking me to go out with him! YIPPEE!!!
Coming from a Catholic school where dating was taboo, I immediately fell in love!
He had me totally distracted... so much so I couldn't pay attention to the algebra teacher that year!
In fact, I had to go to summer school to retake the class I because I did so poorly. My folks didn't think that was funny at all, but I kinda do... now.
WHY am I telling you that stupid stuff? Bout time you asked! HA!
I know about as much about intestinal parasites as I do algebra!
BUT... I do understand how sick you can be when doing something like oregano oil, etc. (I can't even stand to use that stuff in spaghetti sauce! One sniff and my stomach turns.)
And especially the "mixed" formulas designed for cleansing- they can do you in. UGH!
Anyhow...
I will check it out, do some research and ask around to see what we can come up with to try, with the emphasis on care due to the allergies and stomach situation.
I'm thinking one "thing" (ingredient) with breaks perhaps, or even low dose if it would be helpful in addressing the problem. ?? The turtle and rabbit thing?
Do you happen to know your MTHFR situation? I'm seeing a lot more unknown things that are associated with it (I suspect). Some of them haven't been documented yet, so if i know your MTHFR situation I'll check that out too.
OK, got to tend to some things right now, but will get on that situation ASAP!
Hoping soon I'll know more about intestinal parasites than I do algebra. Hmmmmm... I'm sure that was an item on my bucket list, don't ya think?
Laughing now!
I actually don't want to know anything about either of them to be honest, but I will try!
BTW- do you know what kind of parasites you are dealing with? And NO, I don't want to see pictures! You can just tell me.
Here is my email address in the event you want to share or chat privately. Just don't write while you have on that hula skirt, ok?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
While researching it hit me... Leaky Gut? If that is the case and it was treated perhaps the allergies would disappear. Mine did!
Don't know what specific "stomach" problems you have, but here is an overview. You can have some symptoms that match and not others, and a lot or very few.
Better Health Guy Info- a few quotes- lots more there.
"Antimicrobials such as herbs and RX medications, antifungals such as Rizol Gamma, parasites treatments such as the "Modified Simon Yu" protocol, and the Klinghardt Lyme Cocktail. Address biofilms with liposomal solutions, Cistus tea/tincture, Sodium EDTA, Freeze-dried garlic, iodine (for lungs), grapefruit seed extract 10 drops twice daily, silica such as BioSil 10 drops twice daily.
"Parasites can control your mind.
Clove oil may be helpful. Black Walnut, Wormwood, Artemisia, and Citrus Seed may be useful.
Dr. Yu is not convinced that zappers will work for parasites.
He uses longer, higher doses of anti-parasite medications than what is described in the PDR. He also uses combination therapy."
"She than began to explain, how herbal parasite cleanses are good and work, they aren’t quite strong enough to keep parasites gone for good, nor eliminate all parasites in just a few days like pharmaceuticals.
They will always return and even with pharmaceuticals they can still return. They must be treated with the utmost precision. While my doctor really believes in the power of herbs, she believes they do have their place in treatment for Lyme, co-infections, and parasites, but also believes that pharmaceuticals are needed especially in Morgellons/Lyme patients!
That being said, she sticks to a modified Dr. Dietrich Klinghardt Parasite Protocol keeping the dosages and duration down due to possible pharma toxicities;
Biltricide – 600 mg 2 tabs/d for 3 days, off 1 week, then Pyrantel Pamoate – 500 mg 1 tab 2x/d for 4 days, off 1 week, on 4 more days, off 1 week, then Stromectol (Ivermectin) – 3 mg 6 tabs in 1 day, repeat 1 week later"
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Monastery of Herbs seems to really help me with parasites.
hope you find some relief
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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