phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
As the years pass seems my old body is wearing out. Less good days and seems have gone from being housebound to bed ridden..
Still hoping for improvement but this past week my hopes are going.
Can anyone relate? If so would love to hear from you. I just don't know which way to turn, seems every time I do I run into a dead end.
My daughter and granddaughter will be here in a couple of weeks haven't seen them in over a year and I don't want them to see me this way. Their last visit I was able to be up and about some.
Thanks, didn't want to have my pity party alone.
Posts: 1058 | From VA | Registered: Oct 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Housebound yes. Bed ridden, I refused. I didn't care if all I could do was shower and brush my teeth and dress in clothes.
I would make it to the couch many days and that's where I stayed. No TV until 4pm News. I lost hours and days like that.
When I could I would sign on here. No energy to post, just reading. I rarely posted for years. It wasn't until I became more alternative because traditional meds(abx 3+ yrs) failed me....
It's hard to keeps ones spirit up when the bacteria are so in control of every part of your body including your brain.
Sometimes you just have to knock them out of the way anyway you can to try to lead a normal life. Normal might just be hours and done.
Normal life might need you for one day. Try with all your heart and soul to do it. Just know your body will rebel after. Expect it and accept it.
Pam
that I started posting.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Map,please share with me your traditional meds..
I am so confused, what to take , what not to take etc.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm sorry that list is so long and so old....I don't even remember all of it.
I was on abx within 10 days of the flu-like illness from he!!. More than one abx, like a sinkful.
I wish I could tell how and why on everything. There is not a simple answer to a very complicated illness. If it was one size fits all we wouldn't be here.
A search on me will give you some history on where I've been since '98. Truth is I don't know how to get well.
I won't repeat it unless I've experienced it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
I was housebound and bedridden for over a decade. I do relate, and I still have periods where I just can't go anywhere or do anything, but rarely now. I refused to see people, and basically isolated, partly because no one believed me and the pressure to be 'normal' was just too much for me. I would be exhausted in 5 mins of talking to people and then 'crash for days or weeks after any type of exertion - of even having a visitor for an hour.
I finally found a Dr who wanted to experiment and I agreed. he used alternative testing methods and Rx'd doxycycline (pulsed on and off) for over 5 years, and also other meds like Flagyl and Zithro. i am not cured - but i have also been ill with Lyme for 50+ years. Now I am relapsing and remitting, and the trigger is always a stress event of some type or an accident - something that stresses the adrenals will send me right into relapse.
At this point in the game, for me, it is all about food and reducing inflammation, avoiding stresses of any type and fermented foods like Kombucha and Kim Chi. And, green smoothies
In my world now, that means a green smoothie almost every day that includes a greens of some type (spinach or romaine lettuce, usually or kale or beet tops) a banana, nettles infusion (pour boiling water over nettles leaves and leave on counter overnight, add 1 cup to the smoothie)about a tbsp or 2 of flax meal, and most importantly (after nettles) is a teaspoon of tumeric and a 1/2-1 tsp of spirolina or blue-green algae. Whiz all that up in a blender with other fruit of choice (I like strawberries) and drink that down in the morning. Tastes like a fruit smoothie and regardless of the greens used, the banana covers it up s you can't taste it. The banana should be organic. It has done wonders for me as has a mostly organic diet, cutting down on dairy and maybe even more important was the addition of probiotic foods. I make Kombucha (a fermented tea) I eat Kim Chi and these two have helped immensely.
Also it has been found and proved in myself, that cutting out wheat will reduce your pain - in me, about 80% or more. It is not the gluten in wheat that necessarily is the problem, but some other compound (I forget the name) that increases inflammation. So, in summary: 1. green smoothies with nettles infusion, tumeric and spirolina and banana, the flax meal, plus anything else you like. (yogurt or hemp milk are usually in my fridge) 2. probiotic foods such as Kombucha and Kim Chi 3. All organic or as organic as possible, with a green smoothie every day then at least 1/2-1/3 of your meals are raw. Eat as much raw as you can. 4. cut out wheat and reduce dairy. 5. avoid stress, and when stressed, REST.
This has kept me upright and mobile for the last year or more. Best *S*
Posts: 116 | From Bisbee, AZ USA | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Oh it takes more than just some abx to recover for the vast majority of the people that have lyme & co.
Ask the most well known LLMD in the world. Even he will tell you it takes sooooooooooo much more than traditional meds. When I say traditional meds....that means doxy + rifampin + IVs + etc.
This illness is more than a simple bacterial infections. It's many unknown bacteria besides lyme with a few or several viruses thrown in and then add a few or several parasites into the mix.
All the abx in the world including IV abx is not going to fix this dirty mess. The terrible part is what the other things to do, comes out of ones pocket. It's not covered by insurance companies.
Insurance companies do not pay for the majority of alternative necessities. You can't even get more than one LLMD to agree on a certain/precise/no questions asked protocol.
You can't promise people if they follow your protocol they will have wellness. It a process and a very long process. Look at some people that have spent their life savings trying to get well.
They are still finding new and ever changing protocols to help them. The one thing I've learned the hard way in 12 years....one man's medicine(whether supps, abx, vit, herbs, etc) can be another man's poison.
Avoiding stress is a good on. #1 IMHO. Life happens daily around us, whether we are ill or not. Careers, marriages, families, friends, DC and the powers that be, are stressful(these days). I think the sky really is falling this time. or
The only way to avoid stress is to hide out in a cave and don't give anyone your cell number.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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