I'm so tired... how do you keep yourself motivated?

When I want to give up - it's a fleeting thought - because right away I think "I can't live like this for the rest of my life"
It won't be any easier to treat down the road (in fact most likely more difficult as the infection will grow)

I also think about the modalities that I haven't yet tried..

I will beat this...or I will die trying - that' my motto for this dang disease. I won't give up.

I'm wondering if you're taking enough probiotics and the timing.
You don't want to take them close to the time you take your antibiotics.

I take my probiotics several times during the day...and I take different types. I take capsule form (two types), Kefir, and Bio-K.

It isn't stupid to think like that - most, if not all of us have had those thoughts...it's not usually normal to feel worse when you treat an illness - except if you have lyme and co's.
But, if you get into some good detoxing habits, that should help with the symptoms of die-off.

Are you doing enough to detox?

I'm right there with you. Nearly two months on herbs and almost one month on both herbs and antibiotics and I feel worse too. It really does mess with your mind. My mom worries I have depression, well of course I do! It's a depressing disease! I find this group infinitely helpful. It keeps me motivated and helps me look forward to better days. To be honest though, yesterday I didn't even take all my stuff because I felt so lousy. I think a day off now and then is ok. Hugs to you and prayers.

blueberrymuffin said...


Girlie I like so much your sentence: I will beat this...or I will die trying
Such a great sentence!!

Well, it is the truth...I'm not giving up...so eventually I will die with it if I don't beat it...lol.

i can't stop now...the bugs are all stirred up and angry...no going back now...

April_Ryan, I call it VENT rather than pity party. Coming here is the best medicine and sharing what you are going through. I didn't go the anti-biotic route, mostly herbal, but 30 more days and you should start to notice a difference. You do tend to feel a bit wonkier first, but then things clear, then as you discover new things to integrate, then switch up the protocol, wonkier again.

It asks of us a lifestyle change.

Learning to accept a slower way of being with health being the number one priority OVER EVERYTHING!

You'll get there, one dose of anti-biotic, one meal, one detox effort at a time.

I promise!

It REALLY DOES GET BETTER! If things get stuck, and you feel like you aren't making any improvement after 3-4 months, then switch it up. Different bodies respond to different things.

Hang in there!

I'm right there with you all!! I would really LIKE to give up at this point - but I know what it feels like to not treat and live with these infections. Believe me, it's easier to stay in treatment.

I'm with Girlie - I'll beat this, or die trying.

All we can do is keep putting one foot in front of another, detox the most when we feel the least like doing it (because this is when we need it most!!) and to just hang on by using whatever we need to in order to do so. If it's coming on here to get help and support, then do it. If it's a good cry, then do it. If it's a 2 day break from meds so you can catch up to your toxin load, then do it. Whatever it takes - hang in there along with us!!

As for eating, that's my biggest hurdle as well. I hate food because I've had to force myself to eat for so many years now. I don't have a large variety of things I cook, mainly because I've concentrated on finding good, nutritious recipes that are fast. With the colder temps, now's a good time for basic soups, which can be made a lot healthier by using bone broth instead of stock or bouillon. The family favorite is still chicken soup - no noodles, just chicken and veggies, lots of garlic and onions and plenty of poultry seasoning.

We also love white chicken chili from the South Beach Super Quick Cookbook. The only carbs are the beans, although it does call for cream, you can use canned coconut milk and just scoop the top (the part that's' more solid) off and use it in place of the cream.

And one of my favorites is also the white Clam chowder. I have a super easy recipe that I use, and everyone loves it. It does have nightshades in it though (potatoes), and dry milk powder, so those that aren't eating nightshade veggies can substitute or just leave it out, but I don't think the milk can be left out for those that are choosing to stay away from dairy.

Any soups can be very nutritious and tasty, and even if you don't have an appetite, at least it will go down easily. You can concentrate on using crockpot/slow cooker recipes that you can put together before you leave for work, so that when you get home and are exhausted, all you have to do is serve the soup, then refrigerate leftovers for the next few meals.

One of the things we can do is to 'just say no' to all the running around during the holidays. No matter what others think of our condition, we KNOW we are very ill and must do what we have to in order to keep our strength and to be able to stick with our own necessary routines. Delegate any chores you can to others too.

We don't really "do" Christmas at my house, other than a nice meal (maybe soup this year! LOL!) for the family. For the grandkids we usually do gift cards/season passes to things like the Zoo, Science museum, or pay for piano lessons or the like. So that cuts down on the gift wrapping, the expectations of others and on my running around and being stressed out over what to buy each person. Those that don't understand, just won't change my mind, as I MUST put my health above their desire for a gift, or my presence at some party. I'm a bit ornery about that part!

Yep ..im in treatme t fatigue also and i only have been in for 12 months .....some stuff better some worse ...there was a time i could not stand for very long ..my muscles are fading all over ...i have loved ones that need me that is why i try ..i have thing i want to accomplish befor i die ...

you meed nystatin at the very least if not diflucan ...yeast need be kept in check ..s.boulardi helps ...get some dopamine from mucuna bean extract ...find what you love and hold it dear ..

when iake it through i will be healed or i will be healed in heaven ...either way i win ...bugs will have their feast eventually. ..just not today ...is a day to day choice ..i ask for the streghnth and grace to do the iv abx or persevere through the bee stings or eat more awful herbs etcetc...i kind got used to the masochistic nature of treatment ..i probably did something aweful in former life and this is just karmic justice ...torture away ...

my teacher 6 years later said she had ice cream and dairy ...oh the day ...

With much difficulty, and much falling down - many, many times. After many scrapes and bruises, you get better at picking yourself up.

Because, much like you, I don't want to live sick, and I don't want Lyme to keep me from living as close to a full life as I possibly can. Nobody wants to go down, and then stay down. You get up, throw on a band-aid or two, get yourself a splint, cast, some crutches, or whatever, heal up, and get back at it again.

I may have my limitations, though I'm trying to (try to) get things better, but I'm still going to get out there and do what I can. Eventually, there may come a day where I'll have no choice but to say, well, maybe this isn't something I can do right now, but I'll keep pushing.

I've done a lot this past year, even with Lyme. It's been hard, it's hurt, I've made a fool of myself. Cried. Beat myself up over not being able to keep up with others in some regards. It hasn't been easy.

Plus, more than that, it's taken away from the time that I've been able to invest in trying to figure out how to get better. The way things are for me now, I'm basically just maintaining, slowly inching towards "perfecting" some sort of protocol with my current assets and access. Not a good thing, I realize.

Health is everything. Life isn't life, not without your health, which is why I'm totally understanding of people who feel they can't try to build their lives in ways beyond Lyme/co and whatnot. But, you know, I'm tired of that.

But, still, in spite of my sacrifices in terms of health efforts, I've made progress in other ways. (Just to toot my own horn, one of the nurses on one of the floors I work on at the hospital commented to my grandmother how I always neat and am pleasant with the residents - that's great for someone who spent years in their room, immobilized by the Lyme, depression, hopelessness, etc. My health is on shaky waters, but I'm growing as a person, still... somehow). Now, I focus on health a little more. It's all about juggling things. This, that, this.

Basically, my point is, you'll get there. If you haven't died or, not to offend anyone, killed yourself yet, you're not going to, and you're going to get stronger, trust me. I mean, sure, I don't know you, I don't know what turns your health will take from here, I can't say any of these things for certain. But, regardless, I'm going to anyway, okay? You're gonna make it. The road may be long, hard, very painful, but you're going to persist along with me, my friend, and you will have something of an enjoyable life. Humans adapt. Struggle, struggle, struggle to survive. You can do it. Just keep trying.

No one can or should expect perfection, least of all us. That said, in time, along with strength, you will learn to accept that

Just keep trying treatments, detox things, try to see a literate doctor, hold out for change, something.

Who knows, like Lymepilot, you might find the thing that gives you lots of progress in a relatively short amount of time?

I don't feel I have ever had any real leaps and bounds of improvement with my health where Lyme/co are concerned. It's kind of just a standstill.

Though, obviously, that's not always the case.

Just don't rush things too much, remember there are many angles to treatment, etc.

Love you

I feel this way several times a week. But I also there is no chance in hell I will stop till I'm cured. And I do not accept when some say we can never be healed. I don't like my new Lyme life but idgaf I will beat these lil rat ******s to death. And when I do I will do the dance of dances and rejoyce in the fact that I did what many said is not possible. Having strength at our weakest moments is what defines us however having doubt is very common so Is struggling but I say knuckle up and plow forward with all the tools and weapons at your disposal.

Thank you. Today is the first day when I feel actually quite good - a little bit more energy, less depressed, I even did some stuff around the house. But I can't take anything for granted, yesterday and the day before I was so depressed I didn't even see the point of getting up in the morning.

Girlie said...

I'm wondering if you're taking enough probiotics and the timing.
You don't want to take them close to the time you take your antibiotics.
(...)
Are you doing enough to detox?

I take three different probiotics (lots of CFU) twice a day, always 4 hours before/after my antibiotics. As for detoxing, I drink a lot of lemon water, take Epsom salt baths, take NAC and Sarsaparilla (smilax), sometimes also activated charcoal. I take care of my liver by taking phospholipids and milk thistle. I honestly don't know what else I could do.
Ah, I also take nystatin at the moment. I don't know if I already have candida overgrowth in my gut, I know I got a vaginal infection - which is common I guess - but I thought oral probiotics would be enough to make sure I'm safe 'down there' as well. My bad.

julymorning said...
I was on Doxy with it got that bad....what abx are you taking?

Right now I'm on cefuroxime, tinidazole (pulsing), minocycline, levofloxacin and Plaquenil. I can't take doxy, I tried for a week or so but it turned out I'm allergic. To be honest it scares me how many chemicals I'm pushing into my body every day... I guess it's a pretty aggresive treatment, even for ILADS.

Thank you all, I really appreciate your help, tips, suggestions and words of consolation. It's great to have someone who understands to talk to, we all know our loved ones are not always able to empathize (especially when they're healthy as a horse).

April,

Hang in there. We have all been there, done that. Most of us probably think this every single day. We wake up and think "Oh it wasn't a dream. Today will be the same groundhog day of detoxing, supplements, abx, limited food, and feeling anxious, tired, moody, need I go on?

But I also believe we can heal. I really do.

I haven't even been on all week. Had bout of food poisoning Monday and then just weak from how sick I got (full moon) and getting all my son's abx, supplements, detox, food in. Then his moods - he has been really down this week and doesn't want to do this anymore (after only six weeks). Feel like a nurse/chef/mail 24/7 these days.

Stay strong. We're here and you can vent any time you want.

Tepi,

You gave great advice.

For those of you that have trouble eating smoothies really help. I make a protein/spirulina smoothie for all of us in the morning. I use Mediclear and Spriulina Manna and homemade almond milk. It's filling and nutritious.

This may sound strange but showering (dry brush first), washing/brushing your hair and self care - instantly make me feel better.

Hang in there.

April_Ryan said...
Thank you. Today is the first day when I feel actually quite good - a little bit more energy, less depressed, I even did some stuff around the house. But I can't take anything for granted, yesterday and the day before I was so depressed I didn't even see the point of getting up in the morning.

Girlie said...

I'm wondering if you're taking enough probiotics and the timing.
You don't want to take them close to the time you take your antibiotics.
(...)
Are you doing enough to detox?

I take three different probiotics (lots of CFU) twice a day, always 4 hours before/after my antibiotics. As for detoxing, I drink a lot of lemon water, take Epsom salt baths, take NAC and Sarsaparilla (smilax), sometimes also activated charcoal. I take care of my liver by taking phospholipids and milk thistle. I honestly don't know what else I could do.
Ah, I also take nystatin at the moment. I don't know if I already have candida overgrowth in my gut, I know I got a vaginal infection - which is common I guess - but I thought oral probiotics would be enough to make sure I'm safe 'down there' as well. My bad.

julymorning said...
I was on Doxy with it got that bad....what abx are you taking?

Right now I'm on cefuroxime, tinidazole (pulsing), minocycline, levofloxacin and Plaquenil. I can't take doxy, I tried for a week or so but it turned out I'm allergic. To be honest it scares me how many chemicals I'm pushing into my body every day... I guess it's a pretty aggresive treatment, even for ILADS.

Thank you all, I really appreciate your help, tips, suggestions and words of consolation. It's great to have someone who understands to talk to, we all know our loved ones are not always able to empathize (especially when they're healthy as a horse).

That is quite a protocol! Other than tinidazole pulsing...the rest are all daily? the Ceftin, mino , levofloxacin and Plaquenil?
Is it possible to stop a couple of them for a few days...and slow down the killing?