ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

[Avenger]

@Avenger thank you so much for this. You are correct, none of those tests have been performed . I had a stool sample test a few years ago, nothing there but not many tests but things like c diff were negative.

I had a hard time asking about sibo, like I was asking to be taken to outer space . I did find a GI dr at Mayo who will be testing for sibo using fluid from the scope, looking at mast cells and an endoscopy and colonoscopy. He also wants to do imaging. How can I ask him to look
Into d lactic ? Are there any tests at all?

I did cut sugar for a year but not carbs completely . Anything I eat , I turn into an angry drunk and then pass out . Also, the strangest thing is that sometimes I crave alcohol ! I don't drink at all but it's like I'm actually drunk . I want to eat pizza and drink a beer , that's not me , I don't like bad food and don't drink . Of course I enjoyed pizza in the past and fries but once in a blue moon . I'm more hungry than ever now ! Very strange

Yes, dr's most definitely need cognitive behavioral therapy , the majority are just terrible and hate people .

I really appreciate all the information, I wouldn't have known to ask about sibo. When the dr suggested it , I felt good about him , no one else ever mentioned it . No one gave me anything to ease the daily loose stool .

It's so strange the amount of damage this can cause . Looking back, I've reacted poorly to food for many years , outbursts . I had to stop drinking coffee as I was happy for an hour then angry then pass out . But food , would be upset for no reason and I would get so tired but I would fight it off whigb caused more anger , I didn't allow myself to sleep , always had to be accomplishing something ... yeah , now look

But I can't believe how long this has been going on . I remember I would go to the gym then fall asleep, I had bloating and cramps and all food seemed to make me ill but 15 years ago , they said all was fine , just ibs and nothing could be done . I took Chinese herbs and did acupuncture and it got better . But this thing progresses . My
body is done with food . I can't figure out why I get mentally disoriented after eating then comatose . I was never a big sleeper , I could never relax enough to sleep, I had insomnia ! Now I can't keep my eyes open . In fact , I pass out at the GI's office , that was embarrassing. I ate something small between appointments and it did me in .

Did you get very bad fatigue ? I guess you did otherwise you wouldn't have been so sick ! It's like someone drugged me but i can't get out of it , I'm stuck inside .

Hi, I had all of these things, just like you are describing.

Aggressive, angry and drunk like/mental disorientation, dizziness is a sign of D-Lactic acidosis. It also makes you very fatigued.

I also felt bad after eating and it took some years to find out that it was all Carbohydrates and Sugars.

You have to cut the Carbohydrates as well as Sugars. You have to get a new mind set to survive this.

It took me a long time to believe, but once i cut the Carbs out I started to feel a lot better.

You have to starve the Bacteria so that they cannot continue to produce the poison which is causing these problems. D-La can cause Constipation or loose stools. Your angry drunk like sounds like D-La.


Paul.

 

[fredam7]

@Avenger thank you for this . Did you also have a circular day? I start the smallest tasks and then abandon them without even realizing it and then I waste time staring at a wall then somehow come upon the task again . Part of me feels if I keep trying to get better , I might lose my mind completely and not know it and better to take action now .
I was told the tinnitus is permanent, how does one accept losing so many things ? It's so loud and my hearing ? It's too many things .

The scopes went very poorly and still have a lot of pain and I don't think I'll recover from it, it's nerve . So that was a disaster .

What kinds of things did you eat? Absolutely everything makes me sick. Everything. I don't even understand the extent of it, hives allover I just got used to hsving but food definitely sets it off more , I start wheezing , get awful drunk , pass out , I mean it's bad . I have no idea what I'm supposed to eat and I've never had an issue with food , was very disciplined and ate healthy . Now, I seek carbs , I have no idea why . I can quit them though , and sugar .

Vegetables I can't digest but I guess vegetables it is . My body doesn't like them anymore , I can't explain it, something very bad has happened with this food thing . Maybe it's part psychological, god I wish all of it was, then I could fix it.
What kind of things did you eat ? Do I just go with vegetables ? I don't like meat , at all. I can't deal with thinking about the animals crying , I ate meat as I was pushed to and I feel horrified by my behavior . I can't eat them
To save myself. Soy is out due to Hashimotos and this mast cell thing . I cut dairy because of animals but I have had cheese lately as part of my bad food binge .
I found a place where they sell organic vegetables and seem to treat the animals well, they said they don't kill them but some were missing their horns so something happened

I have vegetables and fruits . Can't digest them but that's all I know . I drink water but it immediately comes out .

I'll commit to the no carbs and no sugar . Any tips on what you ate outside meat would be appreciated.
Thanks again

 

[JES]

Vegetables I can't digest but I guess vegetables it is . My body doesn't like them anymore , I can't explain it, something very bad has happened with this food thing . Maybe it's part psychological, god I wish all of it was, then I could fix it.

Vegetables contain carbs as well, some more, some less. You can check out this page to see which vegetable contains the least and most. As a general rule, grean leafy vegetables contain the least amount of carbs.

What kind of things did you eat ? Do I just go with vegetables ? I don't like meat , at all. I can't deal with thinking about the animals crying , I ate meat as I was pushed to and I feel horrified by my behavior . I can't eat them

A diet with just vegetables would be almost impossible to get the required daily energy from. You could try to eat a huge amount of vegetables, but then you also increase your carb intake from mentioned vegetables. If you rely on low carb, fat intake needs to be massively increased, otherwise your body will run out of energy. There are some fruits like avocado that contain a lot of fat. It is possible in theory to do a kind of vegan keto diet with lots of avocados etc., but it's very difficult to follow.

I'll commit to the no carbs and no sugar . Any tips on what you ate outside meat would be appreciated.
Thanks again

The only true zero carb diet would be a carnivore type diet, with addition of maybe eggs. Everything else contains carbs, so there is no way around it. Even the strict ketogenic diets allow for 30 grams of carbs and keeping under 30 grams of daily carbs already requires a lot of discipline.

 

[fredam7]

@JES I'm not familiar with the particulars of any of the diets such as keto. I thought I'm supposed to cut carbs and sugar? Are you saying the diet should be meat and a little eggs ?

Avocado I can't eat because of histamine and MCAS , it's a disaster every time . Every single food is so I don't know what that's called but others are struggling with food as well. There is nothing I can eat and not pass out afterwards . At this point , my immune and nervous system are ruined , there is no hope whatsoever . They told me yesterday the tinnitus and noise sensitivity are permanent . My ears and music are or were so important to mf . Really , there is nothing left , not even basic dignity . Just clinging on, for what ? And no this has nothing to do with ending lives , how people this sick are expected to be "hopeful " is disturbing . Glad for those doing well enough to feel that . I was hopeful
At different points too . At some point you have to have some dignity , not keep searching for what I can eat , clearly , my body doesn't want me to eat . Clearly , it wants to stop . I can force things down but it dorwnr want it . Doesn't matter what it is . At what point is it enough ? My body also dorwnr want me to drink water , it wants to stop . The stress of forcing it to live is raining hell on me .
The last time I ate meat , it was so psychologically disturbing I couldn't stop thinking about it for days and could smell it for days . I'm so messed up and confused that I can't make good decisions . Someone put it in front of me , knowing I don't eat it , because they like meat . I'm still angry with myself about it . It's like hdvinb Alzheimer's , I can't think at all .

 

[JES]

@JES I'm not familiar with the particulars of any of the diets such as keto. I thought I'm supposed to cut carbs and sugar? Are you saying the diet should be meat and a little eggs ?

If you want to do zero carb then yes, that basically only leaves meat and eggs left on the table. Every vegetable on earth has some level of carbs in it. If you instead aim for low carb or keto, you can easily include many vegetables as well.

I cannot tolerate avocados very well either, so I pretty much gave up on the very low carb ketogenic diet. These days I pretty much eat what I tolerate best without aiming for any particular diets. For me this means cutting out grains and being on a low-carb high fat diet with still eating vegetables, fruits etc., which is pretty close to the popular "specific carbohydrate diet". I get my fat from meat, dairy, and vegetable fats mostly from almonds and nuts. You can cut out meats and dairy, but it seriously limits your options on this type of diet.

For me, this diet reduced POTS symptoms up to the point that I can stay upright for short periods without feeling horrible. But as soon as I eat lots of carbs especially in form of starches, my symptoms worsen for the next six hours or so. Life is tough indeed, I hear you.

 

[fredam7]

@JES
I thought eliminating carbs and sugar was the agenda for d lactic acidosis. So all vegetables are out? What do people eat, just meat and fat?

That's good your pots got so much better . I supposedly have it but I don't think so. Allergist wants me to see a neuro that focuses on autonomic dysfunction and have another tilt table but it's all autoimmune and nerve in my case, what does it matter ? One dr told me I'll be dead soon and my live expectancy is cut quite a bit and denial is not going to prove him wrong .

Nerves are everywhere including our GI. Maybe it's just a total breakdown of the nervous system .
Well, I won't eat meat . Not sure what I'm supposed to eat . I like all vegetables so it wouldn't be hard for me only after I spiraled into total hell, I wanted carbs and gross food, sugar so maybe it would be a little difficult . But I have never in my life had trouble not eating bad foods , I don't like them . When I got in a bad situation and couldn't do much for myself , I ate them to survive and I am certain it made me sick . Common denominators for everyone are environment and food and I know i sound crazy but I saw posts where others feel the govt is killing people and I agree . These disorders are bizarre and everyone has the strangest symptoms , can't eat , disoriented , our necks and heads don't feel connected , we pass out everywhere , we go mental , our nervous systems are damaged hence all the pots and neuropathy , the "neurogenic " bladder . I know a lot of the pharmaceuticals and biologics are ruining people. And then the opportunists come in. Everyone is trying to figure out what went wrong . Why didn't they behave more strictly , why did they use perfume or cologne ? Well, short of living in a bunker , whigb smart people do, we are trapped in it . Its a house of horrors .

Guess it's too late for me . Whether it's MCAS , small fiber , or any of the 20 disorders they say I have , my body doesn't want to see food . This happens to all dying people. They stop eating not because it's a good time , because eating is just not possible anymore . I'm drawing the line at these feeding ports . I've drawn and erased many lines because I wanhed to live so bad but I can't take being 100% uncomfortable at all times and then make it worse .

Maybe the stress of the body decaying and food don't mix , it can't handle another task . No one can be allergic to all foods and I am once again convinced I don't have MCAS , it's just the body dying off . I bet tons of sick people hsve abnormally behaving mast cells and same with people who have gi issues .

Everyone has to try , but I pushed things too far . Didn't even come to a board until after they told me "hey, you'll be dead soon!" I joined in January . The old mind over matter and push and endure , didn't work in the end . Collassal failure I guess . But I do think people should be very careful what they eat .

 

[fredam7]

@JES. I ate turnips with fresh dill, kale and radishes. Feel horrible .
I checked the carbs and they're supposed to be on the lower end.
Potatoes I don't even count as a vegetable but the high carb vegetables i see, I just wouldn't even think of them as vegetables , corn , potatoes , beans . I do like potatoes but I can do without .
I eat mostly green vegetables . Kale , spinach , Brussels sprouts, red chard etc and I like beets , radishes , turnips , broccoli etc. But they all have some carbs so are vegetables out ?
Eating just meat sounds like a disaster even for people who like meat . That would destroy someone's GI, cholesterol and make them lethargic . Add to that , grass fed at a place like Whole Foods, means next to nothing. The chemicals, disease and what the animal is forced to eat, is all passed on

GI dr told me to take Imodium . 2 years later I at least get a suggestion

 

[JES]

Eating just meat sounds like a disaster even for people who like meat . That would destroy someone's GI, cholesterol and make them lethargic . Add to that , grass fed at a place like Whole Foods, means next to nothing. The chemicals, disease and what the animal is forced to eat, is all passed on

The zero carb diet involves eating just meat and thousands of people worldwide are now doing it. Inuits lived mostly through this kind of diet, so in short-term it isn't going to destroy anyone. There is no data on long term effects, but the cholesterol hypothesis has been shown to be overblown.

I see no reason to cut vegetables entirely out, but they do contain some level of carbs. I also don't see how you can really do a low-carb diet without eating fats from either fruits like avocado or animal fat. A diet without carbs and fats would ultimately lead to starvation.

 

[Avenger]

I'll commit to the no carbs and no sugar . Any tips on what you ate outside meat would be appreciated.
Thanks again

I was very ill when Dr. Myhill first told me to cut out Carbs and Sugars. I though at first that it all sounded nonsense. It did not fit normal science, medicine or understanding and I distanced myself from ME/CFS even though I had the same symptoms and every day felt like I had climbed a mountain without oxygen. I could not get my head around it and I did not have the discipline to trial the Low Carb Diet that Dr. Myhill suggests for all of her ME/CFS Patients (go to her free website). To be very honest I thought that it was all hippy, alternative.....nonsense.

It took getting a formal diagnosis to realize that Dr. Myhill is probably one of the most gifted Doctors and that her thinking was light years beyond the establishment (She also prescribed B12 and Magnesium Sulphate, which helped with the fatigue).

Unfortunately I have to live on protein from fish, meat and eggs. I too would like to become vegetarian (and not harm animals, but I am not sure if this will be possible). You can eat things like bacon eggs, mushrooms, tomatoes. Meat or fish salads, low carbohydrate yogurts, hard cheeses, certain vegetables (no potatoes, rice, pasta, bread, cerials, cakes etc.) Low Sugar fruit like Blueberries. Some vegetable are higher in Cabohydrates than others. You will need to start low, while checking online for individual levels of Carbohydrates in foods.

The thing is that just lowering Carbs and Sugars will stop or reduce all symptoms as well as Gut symptoms like reflux, bloating and pain, but more importantly they lower or stop the effects of the neurotoxin that causes difficulty thinking and multiple symptoms by affecting every organ. It was the Carbohydrates that were making me feel sick, bringing up food on and off most days.

I did not get hives, but I did get itchy pin prick sensations all over. This was when I was most unwell and often having difficulty thinking or very confused. Every cell in my body hurt. I now realize that I was unable to process oxygen or glucose and was suffering mitochondrial dysfunction due to the neurotoxin which affected every cell in my body making me abnormally tired and weak. Bacterial Overgrowth and D-La can cause all of these things.

I still have tinnitus at varying levels which I have not got rid of completely.

Paul

 

[fredam7]

@JES yes , short term would probably be fine , but how can someone live on all meat ?! Long term ? Inuits eat clean meat at least . Are you in the states ? The meat is horrifying here , I don't think there is a place on earth where it's worse but people refuse to acknowledge this. Meat in the states is a sure way to many diseases .

Are you eating meat only ? My god , I'm screwed , no way I can do that . Just impossible . The odor is more than I can bear and I can hear the animal crying . In the meat , I've heard it since I was a kid , they suffered , horribly , I just can't , I rather die and guess that's what's next

The diet thing is a big problem . Wish I could have avocados . I always are mostly vegetables , but carbs too , I guess that's why I was ok , I was really healthy . I tried eating nuts but with the mold and histamine ... See , I just don't have any avenues left , end of the road .

 

[ebethc]

Hi, I am aiming for 0% Cabohydrates and Simple Sugars, but as low as possible for Carbohydrates and no Sugars if possible.

Protein, Meats, Fish, Eggs, Yogurts, a small amount of Fruit especially with low fruit sugars.

I started a ketogenic diet this year and it has definitely helped w pain. Unfortunately, it has not helped as much as I would like w energy (hardly at all) and cognition (a little bit). Winter is tough, so I'm hoping for momentum over the sunnier, drier months.

Highly recommend playing around w macronutrients, (Fats/Protein/Carbs). the keto diet calls for 70% fat which is too high for me, so now i'm settled around 50% fat, (both EVOO and animal fats from cows/goats/sheep... I try to vary it..).

Still figuring out the Protein : Carb macros.... I was eating 0-15 grams of carbs and that was too low for me, so now I aim for < 30grams per day, with an occasional "HIGH" day, which is 50-75 g of carbs.

I take Betaine HCL to help digest meat, but got a stomach bug and got thrown off track... I'm wondering if too much meat irritated my gut, so I'm going to start adding amino acids to compensate for a little lower meat. note: if your glycolysis pathway is screwed up, then your body burns aminos for fuel. Fluge and Mella found this to be true and there is other info on everything that I'm saying all over PR... I'm just summarizing


Here's the Keto Diet for M.S. study that inspired me to kick off the new year w a keto diet. It speaks directly to Mito and ATP, which is what caught my attention. No word on microbiome, but IMO, that is likely the root cause of the dysfunction in the first place.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4709725/

Here's an article on the dysfunctional glycolysis pathway and shift to amino acid burning:
https://www.healthrising.org/blog/2...e-syndrome-energy-problems-fluge-mella-study/

I have tried the ME/CFS Association. They have told me firmly that ME/CFS is caused by Viral infection and they have made no attempt to investigate. I am very suspect of their motivations and trying to get this out to as many people as possible. I was so unwell that i was close to suicide just at the point that I was diagnosed.

this is frustrating... I guess if you have a hammer, everything looks like a nail... IOW, viral infections play a role in deteriorating health, but there's more to it.

 

[Avenger]

The zero carb diet involves eating just meat and thousands of people worldwide are now doing it. Inuits lived mostly through this kind of diet, so in short-term it isn't going to destroy anyone. There is no data on long term effects, but the cholesterol hypothesis has been shown to be overblown.

I see no reason to cut vegetables entirely out, but they do contain some level of carbs. I also don't see how you can really do a low-carb diet without eating fats from either fruits like avocado or animal fat. A diet without carbs and fats would ultimately lead to starvation.

Hi Jes,
I completely agree, but there is no alternative but to eat meat to survive this condition. You are right and much of the meat has levels of antibiotics (and chemicals) that has been used on farms to wean, stop disease or gain weight (we are advantaging bacteria with low levels of antibiotics). We need to break the cycle and start to only allow free range products on farms and to stop the way that we use insecticides. I see us as fall out from the increasing use of these things.

Our Bacteria Gut Bacteria are related to the Global changes that are a part of the ecosystems that we are endangering through ignorance and greed including our own.

Our insects are under threat and 40% of insects are declining and a third under threat. When they are under threat we are under threat because all of the ecosystems depend upon insects. We need to change the way that we farm and stop using insecticides. Insect are essential as food for other insects, pollinators and recyclers, but we are losing them at such a rate that we are nearing a catastrophic collapse.


Paul.

 

[fredam7]

@Avenger thank you for the types of food that are ok to eat .
I wish I could see Dr Mayhill but you're sharing the knowledge so just as good otherwise many of us would never know
Why are some people made ill on carbs and all of a sudden? I do like carbs , I like rice and sometimes potatoes . When my gi got really bad, I was told eat small
Portions of just white rice but I would get so confused afterwards .

The neurotoxins is a huge piece , this I fully believe. I have complained that I feel I'm not getting oxygen and the dr's laugh and say no no, it's MCAS , pots , small fiber etc . Well
It feels like lack of oxygen ! And maybe the small fiber is because of the food . We do have some issue with glucose and insulin but since I'm not diabetic , they said no but how else to explain the reaction after eating ? I fell on the ground and went to sleep in the dr office and they said oh my , she is dying , why won't she take IVIg . I told them I just ate , food and collapsing , not rocket science , something isn't working . I also feel it's why I developed severe small fiber neuropathy , just like diabetics do. My toes have turned black recently . My feet and lower legs look horrible , like a dead persons and I had very good skin . It's the food , it's something with circulation and glucose , etc but I don't know how to put it together . They told me the mental confusion was MCAS and others told me it's the neuro disorder and I'll be dead soon . Some days I think ok , they told me I'm going to be dead soon so maybe it's happening and other days I think if only I can find the right diet

The tinnitus is so bad . It happened so fast and just gets worse . Very upsetting thqt it's permanent . I can't be 1% of what i was and thibk that's ok. Quality of life matters . I don't know , just wish there were better options

 

[fredam7]

@Avenger so we eat dairy ? They told me cut dairy as I'm lactose intolerant , isn't every adult lactose intolerant ?
Is there a place to find out the allowed foods and I cAn pick from
There ? Maybe I can have vegan protein shakes instead of the meat , I bought one of those from Whole Foods , it's a powder but it made me sick too .
I wish I could eat soy, that would solve the problem with the meat . Maybe I can try tofu again .
The strange thing is that I'm so hungry . I wasn't like this , I had no problem never eating breakfast and I skipped lunch 90% of the time and ate dinner . Now I'm a hungry hippo , maybe I've gone crazy . I want to eat bunches of kale and turnips and poatatoes but I stopped the obvious carbs .

 

[fredam7]

Ok, I ate an egg and the inside of my mouth itches and stings . I guess I'm "allergic ".
I'm so flared up it's hard to tell but for once I wasn't itchy in my mouth so yes , seems something with histamine is going on . I'm not allergic to anything aside from vancomycin so for whatever reason , I get a histamine response to a lot of things . Avocado is another

I want to be normal !! Have a life . I'm hungry in some abnormal way .

 

[JES]

Dr Myhill has put together a wiki page (link) on the diet she recommends, which I found useful. Of course, some claims need to be taken with a grain of salt. I don't believe there is one type of diet that fits everyone, but there is definitely a potential to low-carb or keto type diet for some CFS patients.

@fredam7 If you are constantly hungry, have you counted what your daily calorie intake is? It sounds to me like you are trying to eliminate too many things. Carb elimination makes no sense unless you increase intake of fats dramatically.

 

[fredam7]

@JES thank you for the link

I think you're right , my diet is not good at all. It might also be malabsorption with the bad gi issues . And maybe searching for energy . It's so strange to me, like I've lost all disciple . Maybe because I have no life but everyday I say I'm
Not going to eat . I was on
The starvation diet for 4 months , I was too upset to eat . But it was easy not to eat . Now it's difficult but once I get past 2 days of not eating , it's not so bad

But you're right in that when I eat , bundles of kale are not doing the trick . I'm trying to think of other fats outside meat and avocado .

 

[tyson oberle]

Are you eating meat only ? My god , I'm screwed , no way I can do that . Just impossible . The odor is more than I can bear and I can hear the animal crying . In the meat , I've heard it since I was a kid , they suffered , horribly , I just can't , I rather die and guess that's what's next

Why don't you try eating insects for protein, fat, vitamin b12, calories, etc? I don't think insects can be compared to pigs, cows, lamb, etc if you are concerned about animals suffering. I personally would not feel guilty about fish either if you can tolerate fish. Unfortunately, the reality of life is that animals kill other animals for food to survive.

 

[fredam7]

Why don't you try eating insects for protein, fat, vitamin b12, calories, etc? I don't think insects can be compared to pigs, cows, lamb, etc if you are concerned about animals suffering. I personally would not feel guilty about fish either if you can tolerate fish. Unfortunately, the reality of life is that animals kill other animals for food to survive.

I'm afraid of roaches , I hope you don't mean those , haha. What kind of insects ? I used to feel bad for the wrapper on candy when I was a kid if it had a photo of a smiling banana, my progress is slow .

I'm open to thinking about it but they're so vulnerable and small . What kind of insects ? I did eat fish before but they have such cute googly eyes and lips. But you're right that a cow is much more difficult , they're so beautiful
And sweet.

I went to a farm to get vegetables , my big outing . There were goats there and I gave them some of the vegetables I bought and they were so cute . One bad big horns and he kept putting them on my hands and wanted me to pet him! I wasn't sure if I was correct but I was , he tried to get over the fence and come with me . After that I feel even more strongly about it . It would be like eating the cats who I'm so honored to live with it.

I appreciate your suggestions . I'll look into the insects . I wish theyr was another way .i know many here are very sick and have to eat it , GI tracts not working .

 

[Wayne]

I still have tinnitus at varying levels which I have not got rid of completely.

Hi @Avenger, I've been appreciating your posts here, which have given me much to think about. -- Re: tinnitus, you may want to check out this thread. It's a bit of a contentious thread (ridiculously so IMHO), but this guy's "Tinnitus Mix" seems to be working well for about half the people that try it (Download is free). -- Haven't tried it yet myself, but anticipate doing so--when I can find the energy to figure it all out. -- @debored13

I Invented a Sound That Knocked Out My Tinnitus

Hi, I am an engineer that was tortured for 3 years with severe tinnitus, fed up I made a device that made a sound similar to my tinnitus and play...​

Thread by: R. David Case, Dec 26, 2018, 1,116 replies, in forum: Introduce Yourself