Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
O.k., I need a break. . .
From everything Lyme and company, viruses, infections, any and all medical procedures and personnel and jargon.
I need to re-group. My body needs a break. I don't know if I m coming or going. I don't know if I m getting better or worse???
I am into 4 months of very aggressive treatment.
Every month got rid of many Neuro symptoms. Started to see improvement.
Never have been able to combat the pain or fatigue though.
Now with IC bladder pain, I have deteriorated. Still fight and continue treatment and protocols.
But honestly, if it wasn't IC bladder, it would be something else breaking down.
My questions:
Has anymore else stopped all treatment ? For how long ? Did it cause more damage and other setbacks ? Were you able to get a better understanding of progress made? DID YOU FEEL ANY BETTER ?????
Common sense tells me to take a break, regroup, and get back on the horse when I can think clearly.
I have the upmost respect for my LLMD and follow all her instructions.
I don't know what to do. Posts: 2977 | From Florida | Registered: Nov 2016
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I stopped treatment once and the good news was many co infections came out of the woodwork (felt terrible). Co infections I didn't even know I had. My doc tested my blood for many infections after a couple of months of feeling terrible and they turned out positive. So you may slide, but just re test your blood to find out what else you have. IMO it's a great opportunity. Stopping helped IC symptoms for me, so I feel it was all positive.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks catgirl.
It's hard to walk by my meds and just ignore them, not take them.
I really don't think I could stand feeling more sicker.
I wish for 1 day a week, that the top Lyme doctors would donate their time and come to lymenet and help answer some of our questions.
We suffer so much. . .
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Hi I stopped when I was treating hard and it was the best thing I did.
At that point, I felt as though my body just needed a break. I could no longer tell what was lyme and co, herx, or my body just in overload.
I stopped for a few weeks. It literally took over a week for me to find my new base line. And mentally it was the best thing I could have done.
Like catgirl, I had a confection surface as well. And it was a good thing. I then went on to treat bartonella and found my path back to health.
Do what is best for you. You will find your way out of this nightmare. I never thought I would get better and I did. You can too
Posts: 88 | From new england | Registered: Oct 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Just what I needed to hear ! Posts: 2977 | From Florida | Registered: Nov 2016
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< BartenderB'>>>>>,
Do you take a couple days to a week off, now and again? It can help to rest your system for a few days.
I'm fixin' to have to take a couple days off again, and try to reassess a bit.
I keep on methyl B-12 so I don't get so much myclonus activity. [Please pardon the medical word].
Keeping you in my tho'ts, and prayers!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks silver wolf, much good thoughts to you also.
I ve only had a 3 day break during a failed bladder distention.
So tired of opening my eyes every morning to this hell.
My bladder pain is like your rash. . . Never goes away.
Here s to better days ahead. We NEED a break !
Posts: 2977 | From Florida | Registered: Nov 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Bb i have been making gains pulsing everything in the book ...listen to your body .. on the ic my nurse treated bart vinconii with o3 insufflations via catheder and bvt and hers went away
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
My daughter took an 8 week break and visited family, just to get away for a bit. She did fine and resumed treatment again after. Now, after 2 months of IV antibiotics, our LLMD wants her to take a few weeks off and rest, reestablish a baseline, give her immune system a break. This even though she's handling the meds allright. So, yes, i agree wit the others, take a break, or back off a bit.
I hope you resolve your bladder problems. My mom had chronic bladder infections her entire life. She's finally stable with herbs now.
Posts: 28 | From NY | Registered: Feb 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Well, forget about getting off the doctor merry-go-around.
Had uro doc appoint. this morning.
Sorry blue, but o3 insufflations wouldn't touch me. Today I had 10cc of 60mg rimshot via catheder. It stung like a bee and made me dizzy.
I m a bartender by trade. I make pretty drinks.
I have never had any interest in the medical industry. And I don't want to become one of those people who constantly complain about all their ailments. Yet, here I am.
I bought Dr. H 's new book. Can't read or understand it with Neuro problems. So it collects dust.
The problem with Lyme diagnosis, is that it's never JUST Lyme.
So as much as I want a break, my body won't cooperate. It's always seeking attention for something or another.
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Poor Bb. ^&&^%$
So sorry to hear you are still having so much pain!!! I know nothing about the bladder and what you are going thru, and have no helpful hints for you. So sorry about that!
And also sorry that of all the body parts, "THAT" part of your body wants attention now.
This is the point where I must duct tape my mouth shut....
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