My pain level, and illness level was improving so much!
I could actually accomplish things during the day, and would even have moments of no pain, or a lot less pain!
I started to eat food.
I cheated and had a huge milkshake last night.
ANd now I am really suffering!
It is torture!
The pain had been so bad that I would cry and scream all day long, until I figured out that if I ate right at bedtime, take a sleeping pill, then the next day the pain would not be so bad.
I got so good at this, and was eating very little, but the pain and illness were improving dramatically!
The pain is torture today! I have not left bed at all!
It's like starting all over again! As if I have not even been on 18 months of treatment!
I am not eating anything all week!
I can't bear this!
It's not like I was 100% better, but I had improved 40%
I also don't take any vitamins either, because the same thing happened.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
Don't worry your system will get over this, just don't do it again before few years:-)
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
torture nerve pain that I have been in the emergency 2x for.
It took a morphine drip to take the pain away.
Four years later, I am still suffering.
I was a athelete training 30-40 hours per week, was able to teach yoga and had mastered some advanced poses.
I could even do the splits up the wall, and the over splits. I was very flexible.
I used to eat only fruits and vegetables, and led an extremely disciplined life.
My LLMD knows that i am in extreme pain, and is so compassionate. I told them that I can't eat very much. They said it was okay as long as I drank lots of water, and had one cup of juice or equivalent.
I found that Almond milk won't set off huge nerve pain episodes.
My pain feels like a sunburn, and 20 guys beating me with brooms sticks all at the same time!
Add, another 20 guys barehandedly ripping off your skin, then pouring vinegar and salt into the raw, bleeding flesh.
Add being boot stomped and kicked by 20 huge Goliath=like cowboys with steel tipped cowboy boots!
Add 14 elephants sitting on top of your body, sothat you always feel crushed and deprived of oxygen.
I used to cry and scream all day long.
I take 4 oxycontin, plus 3 percocets per day.
I have been in bed for 2 years.
This last couple of weeks I finally started like I could venture out a little bit each day.
Not out side, not out for a walk, just out of my bed.
I screwed up my only way of being able to survive the day.
I figured out it was the food that was making it worse, by first eliminating one type of food at a time.
Bread and sugar is definitely the worse!
I figured that out by accident! My LLMD is really strict about diet and probiotics while I am on oral Antibiotics.
I am terrified of yeast and c-diff. So I took out sugar, carbs. and breads out of my diet.
It made a huge difference.
i make sure I have lots of healthy fat. The nerves and brain need this.
I like Grapeseed oil. It is suppossed to be one of the best.
I know that a lot of kids are in the same kind of pain that I am in, and I have had some mothers beg me for some ideas.
I also figured out that if I made my fruits into a smoothie with almond milk and protien powder, my body seemed to handle it better.
As well, if I made a homemade purreed veg. soup and added lots of grapeseed oil. I could just tell that my body was happy.
I have had so many Chiropractors and physio's completely amazed at my ability to know how to control every muscle of my body, and how in tune I was with my body! They said that they rarely see that.
So I am just trying to help those in pain.
The joint pain I can handle, the headaches I can handle, but there is something about this other type of all over body pain that really does me in.
Also, one person in my house has a virus. I am wondering if that is affecting me too?
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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Also, isn't there some science that sugar feeds the bugs?
Sorry you've had to learn the hard way.
Here's one idea, altho if it's a bad one for you, don't act on it! Once in awhile, I ask someone else I know if I can have a tiny sip or portion of a no-no drink or food that they're having.
And in that way, I get to have a little experience of what I'm missing without paying a huge price, or hopefully any price at all.
Can I tell you the funniest one? I was at a Chinese restaurant and my mom was having wine, which I don't drink.
But I thought it would be fun to have a tiny taste, so we put a tiny bit in my teacup. Unbeknownst to me, however, when I wasn't looking, the waiter came along and filled the cup up with tea.
Well, I went to drink the tea, and had a unique experience of sampling gewerztraminer tea!! It wasn't bad, actually, but it was quite a taste shock!
Posts: 13155 | From San Francisco | Registered: May 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
OMG---this is serious! It sounds like you should be on IV abx to save your digestive tract, and TPN (IV nutrition) to get nutrition into you, if you are not able to eat much. You can't go on like this and get well.
Of course, something like a milk shake for someone as sensitive as you are is huge mistake, but have compassion on yourself.
But seriously, talk to your dr about IV abx and TPN. This is life and death here. Or wasting away, because you can't eat.
Posts: 3792 | From around | Registered: Mar 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Sounds to me like you need to go 100% gluten free and stay that way (you said you stay away from breads, but do you stay away from ALL gluten and wheat products???). Just cutting down on the amount of breads/grains you eat is not all that helpful especially if you have gluten intolerance or celiac. Even one tiny little bit of gluten/wheat will definitely cause illness and symptoms if you have celiac or gluten intolerance. People with gluten intolerance and celiac make antibodies to gluten, so if you are consuming any gluten or wheat your body will know it and start attacking and will definitely cause you issues like pain and neuro symptoms/cognitive symptoms.
People who have gluten intolerance and celiac and eat grains or wheat can definitely have lots of pain from it. Not everyone with celiac or gluten intolerance get the stomach issues like most people think. I have gluten intolerance and if I eat wheat I get very bad neuro and cognitive episodes - I do not have stomach issues from it. Just makes my neuro and cognitive worse than usual. If I eat OATS (which is a form of gluten - some celiacs can eat it and some can't), I get bodywide extreme pain that leaves me writhing and crying.
You definitely should go 100% gluten free. I am of the opinion that all people with lyme and/or chronic illnesses should. Most people will benefit greatly from taking wheat out of their diets (even if they don't think it will help).
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I had a similar experience to this....except the offending food was chocolate.
I was following a rigid lyme diet, and cruising along nicely on lyme treatment and being fully functional. Broke down one night and had four tiny pieces of chocolate...woke up at 5 am the next day with full on vertigo. Devastating. LLMD told me I really stirred the basket. Nobody had any answers for me and the vertigo lasted four months. I was sicker than I had ever been.
It was so devastating that this was self inflicted from food. I have never touched sugar since. Don't know if I ever will.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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chiquita incognita
Unregistered
posted
Missing, my heart goes out to you in the biggest way, I could shake my head with tears in my eyes.
And I want you to know that you just helped me.
I was wanting in the worst way to reach for a banana last night.
You know, sugar, in its own way. Starches convert to sugar in the body, as everybody here knows.
Your story reminded me.
NO!!!!
I too have neuro issues and they are kicked up by sweets.
No way can I do this.
When denial comes into my head and says oh yes, a little bit here and there is okay, I will remember your tragic story.
Again I am soooooo sorry for all that you are going through.
We all want occasional treats. We are all human. It's truly hard to be so Spartan every second of our lives, isn't it. So please don't be hard on yourself. Hug yourself.
YOu are going to be okay. Sometimes huge problems have simple matters at their root. That is something this illness has definitely taught me.
Big Problems, Simple Solutions.
You take care. We are thinking of you and sending you our healing thoughts. May you recover in health and in courage too.
posted
Sure sounds like gluten and probably yeast too. Sorry hun... HUGS.
Posts: 256 | From Texas | Registered: Jun 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Wishing I had answers/insights to share...
Just want you to know, I'm thinking of you, and sending well-wishes your way. Very sad to hear how you are suffering. Sending big hugs. You deserve to feel good. I pray answers come to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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