How do I know I'm not dying?

[Jwarrior77]

I'm a 19 year old male who got struck down with ME/CFS and POTS almost exactly one year ago. It was sudden onset and the rapid progression of this debilitating illness was pretty fast. I am so weak most days it feels like my spirit would just rise out of my chest if it would progress any further.

I've become very underweight at around 5'10 and 106 pounds last time I checked. My ribs, spine, and hip bones show dramatically. My gut doesn't seem to be working right and doctors don't know why. My stool is always a pale yellow color sorry TMI. Nothing gets digested despite chewing and taking digestive enzymes + probiotics. I also have food reactions that I can't pinpoint if it's MCAS or not.

My body constantly feels inflamed with something or some chemical. I also have air hunger and trouble breathing along with brain fog and not being able to think along with many many other symptoms. I know these are all symptoms ME/CFS suffers deal with but I honeslty don't know if I'm dying or not. I keep losing weight and my body doesn't seem to be absorbing any food.

I honestly feel like I need to be hospitalized yet doctors can't find anything wrong and would probably just discharge me. My parents also don't have enough money and have already spent thousands on treatments and ER visits. I can't help but feel there is something underlying going on and I feel this constant weight loss is going to kill me. I'm not trying to be dramatic in any way. I can't help but feel that something is seriously wrong when I feel like this 24/7. Does anyone have any advice?

 

[Booble]

Oh, boy, so sorry you are feeling so awful for so long.
That's good news that your doctors can't find anything wrong. That suggests that you probably not dying.

I think you need to start with gaining weight. A lot of what you are experiencing could be from not getting enough energy and then the cycle continues. I have been through that and things changed dramatically for the better when I started getting more calories in me.
What does a typical day of food look like for you?

 

[Davsey27]

Sorry to hear this

I can imagine what it would be like being in your shoes losing weight that rapidly.I don't know much about Pots.You can ask your doctor for Mirtizipine which has been used to help hiv patients out on weight .

Maybe some Ativan for the anxiety part short term if you can tolerate it Benzos can help with ME/CFS and MCA's

Good luck

 

[dannybex]

Pale yellow stool means no bile is being released to deal with fat metabolism. Are you eating any fats or anything that might stimulate bile, like digestive bitters, or vinegar just as a couple of examples? Also are you eating any carbs, or even sugar? Both get a bad rap here, but if you don't get enough then your glycogen becomes depleted and your body will break down your muscles to try and provide 'fuel'.

 

[ljimbo423]

I can't help but feel that something is seriously wrong when I feel like this 24/7.

I was severe for several years, mostly bedridden and often felt like I was dying. Looking back now, I think I was just so depleted of energy, I felt like I was dying. That was quite a while ago now. I've slowly improved my health to where I live a pretty good quality of life now.

In my experience, ME/CFS does not cause permanent damage to the body. The hard part is finding what diet, supplements, meds, etc. will work for you.

My body constantly feels inflamed with something or some chemical. I also have air hunger and trouble breathing along with brain fog and not being able to think along with many many other symptoms. I know these are all symptoms ME/CFS suffers deal with but I honeslty don't know if I'm dying or not.

These are all symptoms of ME/CFS and you are not dying, although I know it sure can feel that way. As far as the inflammation goes, that too is very common. I have it constantly, aches, pains, often a mild to moderate sore throat and mild flu-like symptoms. Many of these symptoms are caused by immune system up-regulation and inflammation.

Occasionally I get flu-like flares that feel just exactly like the flu but only last 24 hours, never any more. Another clear sign of immune system up-regulation and inflammation.

I've become very underweight at around 5'10 and 106 pounds last time I checked. My ribs, spine, and hip bones show dramatically. My gut doesn't seem to be working right and doctors don't know why.

I don't know how to help with not being able to tolerate food as I've never had food sensitivities. I hope somebody else that has gotten past this kind of problem will jump in and give you some good advice.

Hang in there and don't give up!

 

[Booble]

Gosh, everything Jim says is so true.
An older ENT doctor said to me in late January, "I think you feel worse than you are."
That really had an impact on me and for whatever reason helped me heal. It's hard for your body to get past the inflammation, etc when it blends with the fear and constant worrying and checking on why you feel so bad. Vicious, vicious cycle.

 

[Uknmy]

Pale yellow stool means no bile is being released to deal with fat metabolism.

It could also be bilirubin.

 

[dannybex]

It could also be bilirubin.

Yes, which is found in bile.

 

[Wayne]

Does anyone have any advice?

Hi @Jwarrior77 -- Sorry you have to go through such a difficult ordeal at such a young age. -- Your story seems to have remarkable similarities to that of Jordan Rubin, founder of Garden of Life. Below is a bit about his story. -- Good luck finding some good solutions for yourself!

It´s hardly a coincidence that Garden of Life founder, Jordan Rubin, has a health story that ranks among the most dramatic cases of improvement on record. It was his discoveries, during his personal journey to recover from debilitating digestive problems, that were the foundations of his health philosophy.

Raised in a family that stressed healthy eating habits, it´s impossible to say what caused Jordan to have digestive issues. Even more difficult than finding the cause was the challenge to find a solution. Barraged with intravenous and oral antibiotic and anti-inflammatory drugs, Jordan´s body only deteriorated with treatment. After a few months, the previously fit 19-year-old was reduced to 104 pounds and fitted for a wheelchair, robbing him of any quality of life. When traditional medicine provided no answers, Jordan traveled to seven countries, desperately searching for the solution that renowned U.S. doctors couldn´t offer. He made many wrong turns, but his determination to live eventually led him back to the U.S. where he discovered a health program that would change his life.

After more than 500 treatments from 70 health professionals failed, Jordan discovered the obvious connection between health and nutrition. With this came the understanding that the human body is capable of accomplishing incredible feats and overcoming obstacles, provided that it receives proper nutrition. By following a health plan rich in whole foods, nutrients, enzymes and naturally occurring probiotics called soil based organisms, Jordan empowered his body to fight back against his health condition.

You can read Jordan's story Here.

 

[dannybex]

@Wayne It's worth noting though that Rubin did NOT use his own product(s) to recover. He recovered using what used to be called 'Nature's Biotics', which was then renamed to Body Biotics.

He then took some of the bacteria, etc., found in that product and formulated his own knockoff, which he advertised in his book years ago, and subsequently created other products that he insisted one needed along with his initial "HSO" product. Why he couldn't just recommend the original is a little disheartening.

Anyway, here's the original story, reprinted from the Townsend Letter for Doctors:

https://www.bodybiotics.com/Townsend_JordanRubinStory.php

 

[Wayne]

Why he couldn't just recommend the original is a little disheartening.

Hi @dannybex -- Good to see you posting; agree with you on your point. Though I think he created some good products, I too became disappointed in how he came to market them. I just noticed that it appears he sold Garden of Life, so he may no longer be with the company.

I first read his story with a certain fascination many years ago. Of the many things he shared in one of his orginal books, one thing has stuck with me over the years. He mentions he saw something like 70 health professionals over a couple of years. Apparently his father was a chiropractor, so many of the practitioners he saw often had a niche that was somewhat "alternative" oriented.

When he finally solved his own health issues, Jordan was certain these 70 practitioners would be anxious to learn the details of what he had done. Extraordinarily--as I recall--virtually none of them were much interested. They only remained interested in their own particular niche. -- Quite a commentary on human nature, eh?

 

[Bead Dog]

Have you had your b12 and folate levels tested?

 

[Jwarrior77]

Pale yellow stool means no bile is being released to deal with fat metabolism. Are you eating any fats or anything that might stimulate bile, like digestive bitters, or vinegar just as a couple of examples? Also are you eating any carbs, or even sugar? Both get a bad rap here, but if you don't get enough then your glycogen becomes depleted and your body will break down your muscles to try and provide 'fuel'.

Yes I'm eating avocados and ground beef but it doesn't seem to help much. Even when I was eating salmon everyday it was still pretty pale. I'm thinking about taking bile Salts to help with this. I've cut out all proceeds foods and carbs and am only eating whole natural foods. The only sugar I'm getting right now are from organic oranges.

 

[Jwarrior77]

Have you had your b12 and folate levels tested?

I've had them tested before and they were in the normal levels. I'm taking a multi vitamin daily.

 

[Jwarrior77]

@ljimbo423 Thanks for the reply and encouragement. Was there anything in particular that helped you get out of the very severe stage of your illness? Thanks.

 

[Jwarrior77]

@dannybex @Wayne Thanks on the info on those bio-biotics. I've heard about the garden of life brand but never knew about the backstory. Pretty interesting.

 

[Jwarrior77]

Oh, boy, so sorry you are feeling so awful for so long.
That's good news that your doctors can't find anything wrong. That suggests that you probably not dying.

I think you need to start with gaining weight. A lot of what you are experiencing could be from not getting enough energy and then the cycle continues. I have been through that and things changed dramatically for the better when I started getting more calories in me.
What does a typical day of food look like for you?

I absolutely agree. If I could get my gut working right again and have less food reactions I feel like I could get some semblance of normal life back. However I don't know what's wrong with it. I got an abdominal ultrasound many months ago and they said that my liver and gallbladder look good. Even though my bilirubin has consistently came back high on blood tests my doctors cant point to why I'm having issues. My theory is that my vagus nerve is somehow damaged in my neck. The vagus nerve helps control the liver, gallbladder, and gut to work right. I think the signal isn't getting through. Ive been eating the healthiest I've been in my whole entire life in my opinion. Nothing processed all whole food organic. No gluten, nuts, carbs, lactose, or anything known to be inflammatory. However I've developed so many food intolerances it's insane. I keep jumping from food to food to try to get any relief. Currently I'm eating a couple oranges, avocados, ground beef, along with multi vitamin and supplements daily. Even that I'm having issues with now.

 

[PatJ]

I've become very underweight at around 5'10 and 106 pounds

I'm also 5'10" and male. I've had difficulty maintaining weight throughout my time with ME/CFS which started in 2003. I've gotten down to 98 pounds at the lowest. I was also stuck at 104 pounds for about a year.

What helped me to gain weight was to use 2 tablespoons of extra-virgin olive oil every day with sunflower lecithin to emulsify the oil and reduce the burden on the liver. After a couple of months I reached a weight of 124 pounds which seems to be my new plateau. I also added 1/2 cup of oatmeal every morning which might be helping as well.

I probably started too quickly with the oil and should have worked up but my body adjusted fairly quickly. I used an equal amount of oil to lecithin to start. Now I use around 1/2 a tablespoon of lecithin for each tablespoon of oil. Sometimes my body seems to need more lecithin. Sticky stool (clings to the toilet bowl when flushing) and a yellowish ring in the toilet is a sign that I need to add more lecithin because both are a sign that oil isn't being fully processed and is making its way into the stool.

Nothing gets digested despite chewing and taking digestive enzymes + probiotics.

You might need betaine HCL with pepsin to help break down protein. I've had low stomach acid through much of this illness and have relied betaine hcl for years.

The brand of enzymes can make a big difference. Enzymatica Digest is well rated and some reviewers have said it's the only one that worked for them. It's what I use. It also doesn't contain any fillers.

Probiotics can be a problem for some people. I've tried many kinds. Some made me feel a little better for a short time, then worse; others made me feel bad almost immediately. It even happens with naturally fermented foods. Sauerkraut clears some of my brainfog for a few weeks then it becomes worse. Tamari soy sauce is the worst for me -- it actually makes it painful for me to think. Weird, but so is this illness. I'm mentioning all this to let you know particular probiotics can help or harm, sometimes one or the other at different times during the same illness.

 

[Davsey27]

I absolutely agree. If I could get my gut working right again and have less food reactions I feel like I could get some semblance of normal life back. However I don't know what's wrong with it. I got an abdominal ultrasound many months ago and they said that my liver and gallbladder look good. Even though my bilirubin has consistently came back high on blood tests my doctors cant point to why I'm having issues. My theory is that my vagus nerve is somehow damaged in my neck. The vagus nerve helps control the liver, gallbladder, and gut to work right. I think the signal isn't getting through. Ive been eating the healthiest I've been in my whole entire life in my opinion. Nothing processed all whole food organic. No gluten, nuts, carbs, lactose, or anything known to be inflammatory. However I've developed so many food intolerances it's insane. I keep jumping from food to food to try to get any relief. Currently I'm eating a couple oranges, avocados, ground beef, along with multi vitamin and supplements daily. Even that I'm having issues with now.

Have you tried beans?

 

[ljimbo423]

@ljimbo423 Thanks for the reply and encouragement.

Happy to help.

Was there anything in particular that helped you get out of the very severe stage of your illness?

I started off just making slow changes to my diet. Like cutting out sugars and junk food, which it looks like you've already done.

Then I started adding in supplements that helped support my mitochondria. From there I started taking herbs to kill off inflammatory bacteria in my gut, causing severe dysbiosis and I think A LOT of inflammation in my body.

I would suggest starting to take supplements to help support your mitochondria, as soon as you can. They have helped me tremendously. Things like branched chain amino acids (BCAA's), coq10 or ubiquinol, acetyl carnitine, vitamin B-1 and alpha lipoic acid are some.

I use to get PEM that would last anywhere from 10-14 days at a time or longer. Now my PEM never lasts more than 24 hours.