posted
If I eat carbs I get fatigue ,my head get woozy and my mind start racing,severe insomnia with nightmares.
I always think yeast.
If I stop eating carbs and eat non starchy vegys and meat I end up even more fatigued,with constipation and gas,insomnia and some nightmares.
The only difference between the two approaches is my mind really races on carbs with the severe sleep problems.
The racing isn't quite as bad on the no carb diet but I get constipated and gassy and a lot more fatigued,to the point I can't get out of bed.
So discouraged and frustrated
Been to 4 GI doctors,no diagnosis for this.
Cannot take probiotics at all.
4 years of trying to correct this,if I could correct my gut Im sure I could live a somewhat normal life.
I cannot find a diet I can do.
Thank you( going to try fodmaps again,I guess)
Posts: 227 | From fairhaven ma | Registered: May 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Feel sorry for you. But believe me, you're not alone in your ordeal.
There is no STANDARD good diet for all of us.
Unfortunately, you gotta look for a total PERSONALIZED diet. I mean, tune each gram of food and drink that comes inside.
When I first fell ill with lyme, and went downwards fast to the point of being afraid for my life, I had to change a lot of things in order to get well.
The list of changes, products, supplements, treatments, forbidden items to consume was very intimidating.
The problem was that I was reacting to almost everything in a bad way. I had no choice than trying to change everything from scratch.
I fortunately found kinesiology, ART, muscle test, energy test, whatever you call it, and that was my pot of gold.
When you need to tune just one or two things, fine, you can do by trial and error.
When you got to tune food (hundreds of choices), and your lyme medicine, it gets IMPOSSIBLE with the trial and error method due to mere NUMBER.
After 4 years on thousands of substances as treatment (food can be also used as treatment) for lyme, I eventually got well.
But I do thank energy tests for that.
I kept wondering how other people could go back to being healthy without energy tests. I guess they were luckier or healthier than I was.
Without energy tests, there was no way out for me. I react to camomile tea, roiboos tea, to turmeric, mineral supplements, to basically many things that are baby-easy to take for other people.
The only thing that I can tell you, from experience: go to a kinesiologist with lyme experience and make yourself tested for all foods, drinks, supplements.
Even if these energy tests are not 100% accurate, it is MUCH better than just doing trial and error.
Of course, this is just based on my own experience. I would certainly be still ill with lyme without energy tests.
Posts: 6200 | From Brussels | Registered: Oct 2007
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I do very well with Custom Probiotics D-Lactate Free. It solved a lot of problems for me.
Their CP-1 is good too, but nothing like the D-Lactate.
As for diet, I have found that reducing oxalates is very helpful.. but difficult.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I agree with Brussels, there is no standard diet. Our bodies are unique, we have different needs.
I get very ill without carbs. (Yes, don't worry, I try to avoid added sugars).
I also feel much better when including fruits in my diet. I do struggle with many veggies. Some I have to totally avoid (even though I love them...), some I just have to cook really well. I cannot eat any veggies raw.
I always make sure to have protein with my carbs/ fruits/ veggies. This and healthy fats helps balance blood sugar better so I don't feel woozy, fatigued, shaky, etc...later.
Also, anything aged or fermented makes me feel very ill, headaches, woozy, shakey, severe fatigued, GI issues.... You may try to avoid them for awhile them to see if that helps too.
Also about the probiotics, I cannot tolerate all the probiotics that have prebiotic fibers snuck in with them. They all caused GI gas, discomfort, etc... VSL#3 and Align are the only ones I can take.
Brand name Florastor does not have prebiotics so I tolerated it but the S. Boulardii causes stubborn constipation. I had to take Miralax with it.
I hope you find what works for you!
Posts: 5237 | From here | Registered: Nov 2007
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I not exaggerating when I tell you how brutal this is.
The brain fog and wooziness,the racing wired brain,extreme fatigue ,nightmares and insomnia are BRUTAL and all GI tract related.
Im desperate to gain some ground and Ive tried a lot of things for years now and guess I will try some more.
It is so brutal that I am at the point of asking for help to cope with this,holding off for now but for me to even think that.
Im thinking the next few days of just trying two foods I seem to tolerate(eggs and zucchini) and see what happens.
Maybe a round of rifaxamin to see what happens.
I figure it has to be bacterial,fungal, parasites or histamine intolerance or all of the above.
I can't believe I can't gain some grond,not for lack of trying.
Interesting observation- Due to constipation ive overdone magnesium quite a bit lately and it has had an interesting effect on my BP and pots syndrome.
I always ride about 100 over 60 BP. After clearing out a few times my BP is consistently riding at 110 over 70 and bending over has become less problem some.
I had read somewhere that constipation causes histamine levels to rise and histamine can cause BP to drop.
Well sun of gun if cleaning out didn't help my BP but thats all it helped.
Im beginning to think the relationship between lymies and pots is because we have compromised Gi tracts from lyme itself or atbx.
Cmon eggs and zucchini,give me a clue.
Posts: 227 | From fairhaven ma | Registered: May 2015
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posted
I have tried numerous strains of probiotics,all make me sick after about three days
Ive always guessed die off(to the point I can't continue)
I recently read(thanks to lymenet) that certain strains reduce histamine so I tried some bifido(align) but that made me sick as well.
Overwhelmed
My two best days with a head that felt like mine were the day after clearing out for a colonoscopy and the day after fasting and having an upper GI barium test.
Fustrating not being able to figure things out,life is right there for me if I could get this gut right.
Thanks everyone for info and letting me vent.
Anyone starting on atbx,Please watch what you eat and try and get some probioics in you hours after your atbx
Posts: 227 | From fairhaven ma | Registered: May 2015
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Do you take enzymes to help digest the foods you eat?
Posts: 2601 | From USA | Registered: Aug 2011
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posted
Wow.. maybe you can buy empty capsules and put just a little in each one.
Are you following a low carb (starch) diet?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
In the first post it was stated that he had bad GI issues and severe fatigue when on low/ no carb diet.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Please hold off on the Rifaximin,(Xifaxan). That is the med you were referring to, right?
It wipes out all of the bacteria in your gut, good and bad.
It would be best if you had some testing done to determine if you have true small bowel bacterial overgrowth. I had this testing done last fall.
The procedure started like an upper endoscopy only they pushed the scope further into the small bowel. Then they take samples of the bowel wall and fluids. They sampled in my stomach on the way out.
The samples are then cultured for bacterial growth. Certain bacteria are supposed to live in certain areas. If anything else grows where it doesn't belong or a pathogen grows, then the doctor will refer you for specific antibiotic treatment.
It is better to know what you are treating than to take powerful antibiotics blindly.
Posts: 5237 | From here | Registered: Nov 2007
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I have taken digestive enzymes for years ,prescription and OTC and the do help my stomach digest.
I am going to try to empty maybe an eighth of a probiotic into an empty capsule and see if I can tolerate that.
Ive tried probiotic and a few FMT
As for the rifaxamin,Im in no rush and will hold off.
I mentioned rifaxamin just our of desperation and ready to try anything.
With my system I probably couldn't get the rifaxamin in me anyways.
I go and see my fifth GI doc in a few weeks.
Lost all hope in GI docs.
I had a biopsy when they did my endoscopy,I think it was for celiac though,will look into that.
Day one today of my elimination diet,hoping for some clues.
Thanks again,Joe
Posts: 227 | From fairhaven ma | Registered: May 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
This sounds really hard. With what you say, I am wondering if you have some undiagnosed food allergies or sensitivities, which are common with Lyme.
When you say carbs, what kind of carbs are you eating? Gluten is bad for a lot of people with Lyme.
Have you tried eating non-gluten carbs?
Keeping a journal of exactly what you eat and how it makes you feel may tease out some patterns.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Ive been tested for food allergies and some foods did come up but then was told by other GI docs and another allergist that those tests aren't worth anything(blood tests for food allergies)
Ive also had a couple of skin prick tests done and all that swelled was the control,not a thing else.
Ive gone months on a strict no carb ,no gluten diet with no results.
I will have a die off when starting a strict no carb or an anti fungal,hence why I always go back to my candida diagnosis.
I have about 4 years of a daily food and supplement and BM diary,and how I rated each day.
The diary is a great tool and I refer to it often looking for patterns.
It has shown me constipation,sugar and fiber seem to be the culprit.
Hate to say it but I have come to the point where Im desperate but I will continue on and keep trying things,get some help to cope if need be.
The frustrating thing is there are a few windows where I feel fairly well for short amounts of time but still can't figure it out or gain ground.
See what this elimination diet brings,maybe try baby doses of probiotics, maybe try yogurt(never tried that for fear of yeast).
Im game now to try anything.
Protecet you gut if you are on atbx.
I remember years of lyme,it was horrible.
This is just as bad
Posts: 227 | From fairhaven ma | Registered: May 2015
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posted
You could try drinking mangosteen juice to see if that helps stop the constipation part. I drink the Mango-Xan version as it's the most tart - about an ounce a day.
Your observation about how you respond re candida treatment is important, I think.
I'm going to guess that you could also have leaky gut, bad bacteria, maybe SIBO - small intestinal bacterial overgrowth - it can cause gassiness. Why don't you look up the symptoms for that and see whether you match it?
I'd suggest looking at the websites of Josh Axe and Donna Gates - both of them instruct on how to heal the gut.
They especially like people to start with drinking broths as they're easy to handle and good for gut healing in the beginning.
Looking at the gut microbiome topic could be helpful for you.
Posts: 13171 | From San Francisco | Registered: May 2006
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I was tested for sibo a couple of years ago and it was negative.
My symptoms are far beyond sibo.
I agree I do think I have leaky gut,I have l glutamine but haven't taken much of that.
Ive read a lot on bone broths and I haven't tried that either.
Be nice if there was a good store bought bone broth you can buy but I don't think there is.
I will read on those web sites,thank you
Posts: 227 | From fairhaven ma | Registered: May 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It's so funny you guys talking about broth, so said, easy to digest!!
My, I get the worst problems of bloating and such a bad feeling with organic fish or chicken self made broth... I was wondering how this could heal me, if I can't even sit after taking sips of that...
As I said, there is NO standard diet. Broths may be easier if TOTALLY diluted, but if not so much diluted, I swear they are one of the hardest thing to digest for me.
As for carbs, I can't let them off either. I know my body does not like loads of carbs, but I can't drop them (grains, I mean).
Not for the moment. I dropped gluten with very good results.
Don't desperate. Many have been in your shoes, don't think you are the only one.
Just go one by one, one item every week, increase one more and so on. That is what I did to my 10 month old daughter, who reacted to almost everything. Then I knew what she could eat and what she couldn't.
As for myself, my list keeps changing, but I never fix it forever. I love fruits, never stopped them either. I also love veggies, so it's not a problem for me to increase veggies.
Have you tried also quail eggs? Easier to digest, richer in vitamins than chicken eggs.
As I told you, what saved me were energy tests. Without these, it would have been hard to find out what I could eat or not.
Just don't give up. You're not alone!!
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
Joe .. don't forget that bone broth is high histamine unless it's cooked in a pressure cooker.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would try asyra if I were you (biofeedback, photons and homeopathic). Then you will know which supplements will work for you, what to avoid, diet, etc. If not that then an ART practitioner.
-------------------- --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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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I lost 1/3 of my body weight over the course of a couple years until I got the correct diagnosis of what was going on in my gut. Everything made me sick and no help from supplements.
I saw many MDs who couldn't help.
It turns out had severe gut dysbiosis. A naturopathic doctor (ND) figured it out by running a CDSA test.
My gut was doing better within 2 weeks of treatment. It's impossible to treat the stomach properly without the right diagnosis.
I'd bring your food diary to the ND if you decide to go that route. Good luck!
Im going for the no-low carb garlic pearl supplement thing.
Im keeping in mind histamine ,maybe get my tryptase level checked.
Anyone have their tryptase level checked?
Need to be more patient and persistent than Ive ever been.
Posts: 227 | From fairhaven ma | Registered: May 2015
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
The following dietary advice from an Oriental doctor was posted in our TxLyme Yahoo forum recently.
Q: Doctor, I've heard that cardiovascular exercise can prolong life. Is this true? A: Heart only good for so many beats, and that it... Don't waste on exercise. Everything wear out eventually. Speeding up heart not make you live longer; it like saying you extend life of car by driving faster. Want to live longer? Take nap.
Q: Should I reduce my alcohol intake? A: Oh no. Wine made from fruit. Brandy distilled wine, that mean they take water out of fruity bit so you get even more of goodness that way. Beer also made of grain. Bottom up!
Q: How can I calculate my body/fat ratio? A: Well, if you have body and you have fat, your ratio one to one. If you have two body, your ratio two to one.
Q: What are some of the advantages of participating in a regular exercise program? A: Can't think of single one, sorry. My philosophy: No pain...good!
Q: Aren't fried foods bad for you? A: YOU NOT LISTENING! Food fried in vegetable oil. How getting more vegetable be bad?
Q : Will sit-ups help prevent me from getting a little soft around the middle? A: Oh no! When you exercise muscle, it get bigger. You should only be doing sit-up if you want bigger stomach.
Q: Is chocolate bad for me? A: You crazy?!? HEL-LO-O!! Cocoa bean! Another vegetable! It best feel-good food around!
Q: Is swimming good for your figure? A: If swimming good for figure, explain whale to me.
Q: Is getting in shape important for my lifestyle? A: Hey! 'Round' is shape!
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Joe, have you tried plain Kefir? A gulp a couple of times a day will give you all the probiotics you need - better than the pills.
Posts: 28 | From NY | Registered: Feb 2016
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