Topic: What are you willing to live with- after treatment
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I would love to hear feedback on this.
What if you have been chronic for so long, you are not sure what '100% perfect' looks like for yourself?
Say you treated hard, the best you could, with professional ILADS, you had your really good last 2 months on antibiotics-
stopped treatment (maybe you even ran out of money) AND, you have some concrete improvements- that are holding-
but some fatigue lingers- stomachs not always the best- you still take and need some supporting supplements--
Enough? Do some of you keep chasing for ultimate perfection? Is it possible?
Or, you are grateful for your improvements- you are living life much better- feel you treated well, and move on,
deal with the minor leftovers?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I'd guess it depends on just how minor those "leftovers" are.
To me, if you can work full-time and live a full and happy life, that would be good enough. And if you had kids and could still maintain the household, that would be good enough too.
And if you could manage to do that while coaching or being a scout leader for the kids, that would be terrific.
Or if you can maintain a full-time college schedule while still managing to have a good social life, while managing a part-time job, that would be good enough too.
Or it you're a full-time mom who is able to do everything necessary to keep the household running smoothly without help, while at the same time being able to be involved in school and extracurricular activities like scouting and coaching that too would be good enough (actually that would be freaking awesome).
I guess it's all relative. I personally wouldn't settle for a bad stomach, but I don't expect "perfection" either.
I think if you're feeling good enough to get on with your life, that's good enough for you.
But that doesn't mean you stop trying to feel better.
Posts: 1885 | From here | Registered: Jul 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
What are you willing to live with- after treatment
alot. way more than i dreamed i would answer b4 i went thru this. i went thru the suicidal stage and totaally changed my "plan for the future"
i'm supposed to be showing horses competitively-(my turn after taking kids to shows for 20 yrs), im supposed to be surfing-not kayaking, i'm supposed to be skiing...not unable to go out in the winter cuz i might fall.
the best now is kayaking quiet salt water-its been awhile(2 yrs) since i've been in the boat but i havent given up yet, gardening perrenials from a wheelchair, hoping and praying to get back to therapeutic horseback riding...a far cry from competing in dressage...but still...i'd be thrilled to be in a barn again...
deal breakers: nerve pain, uncontrolled seizures or inconinence
and honestly...right now what brings me to tears is the thought of my first grandchild in 21 years on its way and me probably unable to hold it.
maybe sitting down. but unless there is some sort of miracle i won't be able to babysit or really help with care. thats the one that hurts and gets me crying now.
its not fair what has happened to ppl with llyme. but just think about what is going on around us...it is crazy. i dont feel i should complain that much when young mothers die of breast cancer,
little kids get killed in school, weather crisis all over do all kind of damage...so many other things
if i am warm/cool, have a comfy bed, and healtyh food, can pick a flower, cuddle with my puppy, smell the salt water, talk with friends, listen to music, read, enjoy a movie, and laugh...i'm ok.
well, actually...i feel blessed. i have gone long periods with things on that list...and now i have them. so yes...i'm ok.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I am certainly willing to accept something more realistic than perfection. I am not willing to sit back, and say that I cannot improve my health and well-being.
Just for background, I first became ill 13 years ago, diagnosed and began treatment 8 years ago. In the last couple of years I've been seeing a holistic, Lyme-learning (ILADS) doctor, who has found some ways to help me improve.
For example, finding that I am homozygous for the C667 MTHF mutation, and treating me. This has really helped. Going gluten-free, another level of improvement. Adjusting my thyroid meds, and starting me on Cortef, very helpful.
These are treatments that my previous Lyme doctor, who I highly respect and who helped me enormously, did not address. He had treated me well with antibiotics, herbal supplements, etc. But, he was only human, and did miss some things.
Now I'm adding in some work with applied kinesiology, taking me up another notch. So, for me, I'm just gonna keep on looking for ways to improve my condition, and keep an open mind.
Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I just happen to be dealing with this very thing right now. Been off antibiotics for 7 months and feeing way better than I did 7 years ago when all this started.
I still struggle with fatigue, anxiety and depression, and a few other minor issues. My focus now is to just get on with my life.
I am in therapy trying to get past all of this. Anything medical now sends me into a crazy state. So I guess I am just trying to deny or ignore some symptoms that might actually need my attention.
I tell myself these 2 things. Either I will never be the same after LD; or it is just going to take a couple of years to get my body back to normal.
I can do more than I could just a couple of years ago. I walk briskly 10 minutes morning and night. I don't work anymore. I now consider myself retired.
We are about to build a new house which will take most of my energy. I am trying to focus on that and just "live life" the best that I can. "Live Life" is my new saying. Live it the best that I can in the condition I am now in.
I actually feel that Lyme is gone; but not sure about other tick borne illnesses. I don't suffer with pain anymore, thus making me believe that Lyme has been eradicated. Hopefully my body can eventually handle on its own whatever is left behind.
My dream was to come on here at this point and fill people with hope. I wanted to say I was 100% better so others could look forward to a complete recovery. I still say be hopeful however, because I have come a very long way and life is better than it was for years. But I can't say 100% better. I don't feel like I did before Lyme Disease.
I haven't given up hope that I will gradually feel better and better.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i tried to watch that video and my computer crashed. it came back-but i'm afraid to watch it now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would keep going. I am grateful for my improvements and realize that slow and steady wins the race. I am not searching for perfection (realistic), just want to get to at least 80% of where I was before my last bite.
I've come to the conclusion that heavy metals, toxins, parasites and biofilms are a huge part of why I feel the way I do.
Even if I were out of money, I would use herbs, a few supplements (Swanson), MMS, clays, DE, eat gluten/sugar/dairy free--you name it. And research all or anything you aren't for sure on. These are all much less expensive than abx and/or visits to lyme docs.
Also, muscle/energy testing is easy to do and very helpful.
-------------------- --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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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Lax, that video got me tears, for sure.
Well, I do feel more than 80%. I feel like I treated really, really hard. The only herb I take anymore is daily curcumin,
because I don't want to keep stirring things up. It is wonderful to be off. Between treatment for my daughter and myself over the last
4 years, I spent my personal retirement account. So at this point, while I am intensely curious to do the metamatrix stool DNA test to check my gut,
for that $500 I can put my girls in gymnastic morning camp this summer.
Anyway, thanks for indulging my musings- I am holding off any further treatment, exercising, running my household, able to hold pretty intelligent conversations,
and grateful.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Oh, I also take daily/every other Researched Nutritional energy formula, which does have some herbs in it, but not
infection killing ones, adrenal support herbs. Probiotics, magnesium, multi vitamin, enough vit. D, I do as well.
Gluten and blatant sugar free, healthy diet.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I am willing to accept all of my symptoms except loss of cognitive function. If it never gets better of course I will have to accept that also, but that's what I tell my doctor. All I care about is my brain. If I have my brain I can continue to work and create and build relationships etc....
laxmom..... Loved that video, very emotional for me as I would love to be a pilot
Posts: 2232 | From USA | Registered: Aug 2009
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
bigstan, now that was funny! Thanks for the laugh.
But just to clarify, you'd be willing to live WITH one of them or WITHOUT one of them (I don't deal in multiples Posts: 1885 | From here | Registered: Jul 2012
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I unexpectedly went off abx in December after 18 months on(after 22 years of un dx) at first I felt a lot worse. It was like everything revolted. Due to a gut issue I couldn't go back on. After 2 months I felt more even. After 4 months off I started to feel pretty normal (for me) each month off I seem to feel better and better (until I went and broke my ankle and lacerated my head) I am not perfect, but doubt that I ever was. But I feel like my body is relearning how to deal with things without the constant flood of abx.
For me, it is feeling good to back burner the Lyme. I know it will always be on my watch list. And I suspect I will need to treat again. But for now, I want to see what me and my body a pretty good diet and once my ankle heals some gentle excersise will do for me.
Posts: 1728 | From USA | Registered: May 2011
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If you had cognitive issues, did they get better off the abx?
Posts: 833 | From Somewhere | Registered: Nov 2010
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Terv, my cognitive issues (word loss, switching and brain fog) was the first thing to come back in treatment for me. After a month of treatment my joints hurt more than ever but my mind was back. I have not lost any cognition since December. Don't get me wrong, I still have bad days, but they are not nearly as bad and usually I can trace them back to poor sleep or trying to do too much.
When I first started treating, I had this fantasy that everything that was wrong with me was gonna get better. I no longer believe that. I think Lyme (or the havoc it created) is always with us. But I'm happy and I can do everything I need to and most things I want to. That's good enough for me.... For now.
Posts: 1728 | From USA | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am getting older so I will never be 100% due to age, and it is hard to tell sometimes what is age related and what is residual infection.
I am for the most part off drugs. As Protomyxzoa is incurable, I have to follow the diet or I relapse. When I feel symptoms coming back, I take stromectol one day and that usually takes care of it.
That I expect is the way the rest of my life will be. I have more energy than I have had in years but I used to ride 2-3 horses every day and now I only ride one horse, maybe 3 times a week. I have lost motivation. It seems like that part of my life is gone forever and I just can't re-claim it, which is sad.
Considering I am 66 years old, the fact that I am riding at all, is really good, but I don't believe I will every get another horse, so when this one retires, that is it for me. The infections gave me anxiety like I never had before and some of that is still with me. Again it is hard to tell what is age related and what is residual damage but I feel much more vulnerable. That is why I am afraid to trust another horse.
I can think much more clearly but I sure would not sign up for a college course. I am painting and taking lessons to try to become better at it. That is what I hope to be doing when I am 90.
What scares me most is the dementia that these infections can cause. They have found spirochetes in the brains of people who died with Alzheimer's.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Nefferdun, I can completely related to your fears of Alzheimer's. I worry what the future will hold for me and my family.
I am 58, undx for about 10 years....it's hard to say. I have lost motivation too. I think for those of us who have been at the fight a long time, it wears on us. Too, I don't know what is age and what is residual infection. It's just sort of day to day.
I remember the day I was finally diagnosed and my husband started reading about Chronic Lyme on the internet. There wasn't as much available back then.
As he read, the pieces of the puzzle, all those strange symptoms started to mean something. I specifically remember feeling somewhat elated that I really wasn't crazy and I would finally be able to get better.
The more he read however, my heart also sank because it was clear there is no certain cure for people like us and the darkness could become very thick before, and if, there would ever be a dawn.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If I were stable and symptoms tolerable, I would quit treatment too. However, I go downhill without them and don't think I can ever quit if I want to avoid dire consequences. No abx means giving up on life for me.
And life even with abx is restricted, not able to do what I used to. Still trying to have some enjoyment in life. Just returned from a camping trip that involved carrying gear onto a big boat, then loading it on a cart to get to campground. Arranged it so the items were all in smaller, less heavy packages since can't lift more than 15 pounds. After that went elsewhere and took a little boat tour which in the past I would have canoed, but with a PICC, was afraid of tipping over. So compromising, but still living. Without treatment, I would become unable to do much of anything. Small victories better than no victories.
Posts: 2888 | From USA | Registered: Mar 2004
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Been ill for over 12 yrs went undx. Dx about 4 yrs ago.. Did see a LLMD.. After all the treatments etc. not much improvement..At my age I have decided this is about as good as it gets. If I could get rid of the anxiety/depression even though it would be hard I can and will have to learn to live with this .. Not only are all my funds depleted so is my body..
So tired of getting my hopes up and treatment seemed to be working only to be knocked down again and get that look from the doctors..
I am able to pick get my great-grans from school and keep them in the evenings. Do light house work and go out to dinner ever now and then.. Travel is a no, no and so many other things I once did.. Guess I am 40% functional or maybe less compared to what I once was but again I am 70 1/2 years so blessed to do what I can ..
Didn't know Lyme was going to be and get my retirement..
Posts: 1058 | From VA | Registered: Oct 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I would keep looking at all angles - particularly the energetic testing (EDS and/or muscle testing) and alternative treatments such as rife, salt/C, and herbs.
Have you tried energetic testing? You can learn so much from that and get to new levels much faster.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I am afraid to go off abx because I have a history of sickness/remissions with this disease. My last big relapse lasted 3 years. Things were going downhill fast. However, I found an aggressive LLMD, and I've been stable the last 20 months for which I am grateful.
I function around 90 percent most days. I still get fatigued and have to take naps. However, my fried brain did come back.
My LLMD won't stop abx treatment until my CD57 is 140. Currently it is 59. I will be starting Byron White A-L.
Posts: 1954 | From Illinois | Registered: Aug 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I've always been a plump, homely introvert.
What I believed, until lyme got me, was that my brain gave me an advantage over outgoing, beautiful, shapely people.
Bit of a background: Tick Bite that started it: 2002.
Many misdiagnoses.
Tick Bite and Sand Flea Bites that finished me: 2012
I need my mind back. I could deal with the painful spine, and joints for the rest of my life, but I can't live without my mind.
It is all I have to offer. And since 2012 I've been like a shell of my former self because my cognition, memory, and word finding abilities have and continue to deteriorate.
I'd even take the nerve pain, the twitching and insomnia if I could just have my wit back.
Sigh.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Hey Greta,
I don't believe for 1 second you're a plump, homely introvert, and all of your posts are smart and kind.
FWIW, I found out I couldn't live with replicating parasites (Ew, I know, but true) after treatment,
so that's what I've been working on- gut health. Gut health not damaged from antibiotics, but yeast and parasites for many years.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Surprise-thank you for your gentle and kind words. They brought tears to my eyes.
You are completely right about parasites and yeast creating havoc! I think there are many parasites that have been classified as not pathogenic to humans. Sometimes I think the medical establishment made the "not pathogenic" statement with the same misguided information that it made about lyme and co.
And instead of saying "oops", let's improve testing and research, it's the same statement over and over.
Thank you again for your gentle and compassionate nature. I very much appreciate your kind words.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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