I appear to be dying and don’t think i can stop it in time

#1

Hey all- I joined in March and loved the discussions but had to quickly leave as some stuff accelerated

Basically I cannot stop losing weight and its at the danger point. My BMI is 13.5 , maybe lower since another 3 weeks passed.

Seems to be a nasty trifecta of malabsorption for fats and likely proteins, mitochondria failing or inefficient, and dysbiosis from a bad gininfection 13 months ago. My body is catabolizing muscle and everything else it can get its hands on. The final straw was that increased my fat from no more than 20 G of fat per day to 65. 4 days in a row for a stool test. I wanted to prove i was malabsorbing fats to docs and the guidelines for test say you need at very least 60 g of fat a day for test to show anything/be valid. I had been very thin, but stable before thar. But that misstep caused the loss of another 11 percent body weight and still losing

Stool test showed abnormally high cholesterol. Other fat markets normal- BUT i tested one day too soon. I’m wondering if the high cholesterol reflects fact that im bot absorbing the eggs i eat every day, but not sure The stool
Test also showed i had almost no butyrate production from the very skewed bacteria found including complete non detection of all the butyrate producing gut bugs, like roseburia

Metabolomics tests revealed other derangements:
While I had enough primary bile acids, I had virtually no conjugated bile acids I suppose this may have something to do with not absorbing fats but dont know what would cause this pattern.

Other thing it picked up is that while carnitine levels ate normal or even high, I am accumulating like crazy too many acylcarnitines This happens when body tries to burn fats for energy but does not succeed. This happens in the mitochondria, suggesting they are not working right. (failing at beta oxidation of fatty acids)

Theres no trouble with pancreas, its not IBD, no reason to suspect colon cancer

And no one will listen. Since no one does metabolomics testing , the data are dismissed. Ditto the comp stool analyses

Have tried everything within my constraints- have a lot of food allergies and intolerances (eg to milk and coconut and palm so there goes MCT (mast cell disorder i think)

Ive tried a bunch of things(eg free firm
Amino acids, taurine, lipase, horse milk) and tried getting a bunch of things but cannot (human milk, fecal microbial transplant, casein hydroxalase without mct)

Oh my amino acid s seem
Pretty deranged too like high proline, low arginine and my urine has high ammonia yet low protein intake , so besides fat mishandling i expect protein an issue too.

Have an appt with a new gi/liver doc on monday but i get along with Mds like - insert metaphor here-…

So am circling the drain. Nothing that is known can reverse cachexia. Note my appetite excellent. Will discuss iv nutrition- but even the fat that reaches my bloodstream cannot be used so i nay get worse or get an ammomia coma or something from the protein.
Maybe if i could get what i want - human milk (ive tried every species except donkey) or FMT maybe id have a chance. Now i’m looking at a few months left if not weeks. Still trying stuff but out of time. Its such a tightly ravelled knot i cannot make any headway.

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#2

I am not a doctor and cannot offer medical advice. I’m sorry you find yourself in this situation. Obviously limited to the information you posted, the emergency move in a situation of cachexia is IV feeding possibly with anti-infammatories, to gain some time to try to establish the underlying reason for the cachexia. This should probably be done soon so you don’t lose too much tissue. IV feeding is not a long term solution, but just so that in a hospital setting they can run a battery of tests to establish a diagnosis and possible treatment. If I were you, I’d admit myself to the hospital ASAP, and definitely not isolate myself at home trying to treat my condition myself. It all starts with a diagnosis, and the sooner the better, so you don’t reach a point of no return. Hopefully you have someone close who can act in a caretaker role and be another pair of eyes to monitor your condition and decision making capacity. Take action NOW. Best of luck.

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#3

I’m really sorry to hear this.

Have you tried something like MK677 which is known to increase appetite and also growth hormone?

Are you male or female? Have you had your sex hormones tested? Even women need testosterone, and it can help with muscle maintenance.

Have you tried taking digestive enzymes, or betaine HCL, or pepsin with meals to improve absorption?

What is your nitric oxide like? I’m not sure if there is a way of testing this, but arginine is necessary for nitric oxide production. A lot of downstream negative effects come from insufficient NO levels.

#4

I suggest doing some “deep research” using a top-tier reasoning AI model (like ChatGPT o3, or Gemini 2.5 Pro. Both of these models have a deep research option.

Start by giving it as much context information as you possibly can. Then start asking questions about possible causes and mitigations. You’ve got nothing to lose and you might just uncover something useful.

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#5

If they don’t have a subscription to ChatGPT to have access to deep research tools I’m sure someone with a subscription here would be willing to help this person.

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#6

Vida, I’m really sorry you’re going through this - your situation sounds critical. Please go to the hospital immediately and push for inpatient care with IV nutrition under metabolic supervision - this is a medical emergency, and you need support now to stabilize.

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#7

@vida,
I have nothing to add but am here to add extra encouragement to follow the advice of CronosTempi and KiwiGuy. Please go to the hospital.

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#8

You should go to the hospital like others said. Get more tests and screening done.

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#9

Its definitely one for medical care from a hospital. I asked O3 about Cachexia.

The short answer

Cachexia can be halted and partly reversed, but almost never with a single drug or one‑off diet. The most convincing gains come from multimodal programmes that combine (1) aggressive treatment of the underlying disease, (2) high‑quality nutrition, (3) progressive resistance‑type exercise/physical therapy and (4) selected pharmacological or anti‑inflammatory agents. When these are started early—before weight loss exceeds ~10 % of premorbid body‑mass—they can restore several kilograms of lean tissue, improve strength and markedly cut mortality.(PMC)

Below is a pragmatic “toolkit”, moving from fundamentals to the newest experimental options. (Evidence refers mainly to cancer cachexia—still the best‑studied form—but the principles translate to heart‑failure, COPD or CKD cachexia as well.) Always discuss specifics with your clinician; doses and safety monitoring are disease‑ and patient‑specific.

1 Target the driver disease first

  • Tumour debulking, modern chemo‑immunotherapy, optimal heart‑failure or COPD drugs, dialysis adequacy, etc., reduce the inflammatory/neuro‑hormonal signals that trigger catabolism.
  • Even partial tumour response or an ejection‑fraction rise of a few points can shift weight trajectory from negative to stable.

2 Nutrition that actually reaches the muscle

What works Typical target Key points Level of evidence
Energy‑dense meals / sip feeds 30–35 kcal · kg⁻¹ · day⁻¹ Small, frequent, flavours the patient likes; fortify with oil/nut‑butter, maltodextrin Moderate (PMC)
Protein 1.2–1.5 g · kg⁻¹ · day⁻¹ (up to 2 g if tolerated) Spread across the day; leucine ≥ 3 g per meal to trigger mTOR Moderate
Leucine/HMB or whey blends 3 g leucine or 3 g HMB daily Shown to blunt muscle loss in cancer and COPD Low‑moderate
EPA/DHA (fish‑oil) 2–3 g EPA + DHA Anti‑inflammatory; small gains in weight & appetite Low

Tube or parenteral feeding does not reverse cachexia unless gut function is absent; it may simply add fat.(PMC)

3 Progressive resistance & functional training

  • 2–3 supervised sessions/week plus daily bedside mobility (sit‑to‑stand, therabands).
  • Systematic review shows resistance ± balance exercise adds ~4 kg to hand‑grip force and improves gait speed when paired with adequate protein.(PubMed)
  • Where patients cannot exercise (e.g., spinal cord metastases), neuromuscular electrical stimulation can preserve quadriceps cross‑section.

4 Pharmacological, hormonal & biologic agents

Mechanism Agent (status) Typical effect size Comments / caveats
Ghrelin‑R agonist (appetite/anabolic) Anamorelin – oral, approved in Japan 2021 for cancer cachexia +2–3 kg BW, +1 kg LBM at 12 wk; better appetite scores QT‑prolongation; not yet EMA/FDA approved (IIAR Journals)
Progestin appetite stimulator Megestrol acetate +1–2 kg (mostly fat/fluid) Risk of DVT, adrenal suppression
Short‑course corticosteroids Dexamethasone 2–4 mg · day⁻¹ Rapid appetite rise; transient Catabolic if >4 weeks
Selective androgen‑R modulator (anabolic) Enobosarm (investigational) ↑ LBM 1.0–1.5 kg; inconsistent strength benefit Phase‑III data mixed; no approval (PMC)
IL‑6 blockade (anti‑inflammatory) Tocilizumab IV/SC Retrospective studies show +5 kg vs –5 kg control, better CRP, OS Infection monitoring needed (PubMed)
GDF‑15 antibody Ponsegromab (Pfizer; phase 2) +3 kg BW, ↑activity index, symptom relief at 12 wk First randomised proof that neutralising GDF‑15 reverses cachexia (New England Journal of Medicine)
Myostatin/activin blockade Bimagrumab, REGN‑doublets (early phase) Gains of 1‑2 kg LBM in small trials Hyperglycaemia signal, costly
Cannabinoids (THC/CBD) Modest appetite boost; no clear muscle effect Legal status varies

Combination beats monotherapy: e.g., anamorelin + leucine‑rich nutrition + exercise shows additive LBM gains.(PMC)

5 Symptom control & microniches

Address pain, nausea, early satiety, oral thrush, constipation or hypogonadism—each can sabotage intake or anabolic response (NCCN/ESMO supportive‑care guidance).(ESMO)

6 Experimental & horizon therapies

  • Activating β₂‑adrenergic / PERK pathways to shift muscle proteostasis (animal data).
  • Gut–muscle axis manipulation (pre‑/pro‑biotics, faecal transplant).
  • mRNA/CRISPR myostatin knock‑down—first human dosing expected 2026.
  • AI‑tailored, sensor‑based rehab delivering just‑right exercise “doses”.

Practical roadmap for reversing cachexia in 2025

  1. Screen early—weight loss > 5 % in 6 months or CT‑derived muscle index < −1 SD triggers action.

  2. Immediately optimise disease‑specific therapy and start high‑protein, omega‑3‑enriched nutrition; add leucine/HMB if intake < 1.2 g/kg protein.

  3. Begin bedside mobility today; escalate to gym‑style resistance within 2 weeks.

  4. Choose a drug based on dominant phenotype:

    • Appetite‑dominant → Anamorelin or megestrol.
    • Hyper‑inflammation → Tocilizumab (off‑label) or consider NSAID/omega‑3.
    • Severe muscle loss despite intake → Enobosarm study, early access to ponsegromab or myostatin inhibitor trial.

  5. Review every 2–3 weeks: aim for +0.5 kg BW or +1 cm mid‑arm circumference/month; adjust components if plateau.

  6. When goals of care shift to comfort only, prioritise symptom relief over anabolic targets.

Key take‑aways

  • Reversal is possible: weight and lean mass gains of 2‑5 kg within 3 months have been demonstrated when multimodal therapy starts early.
  • No single silver bullet—cachexia’s metabolic, inflammatory and neuro‑hormonal drivers require parallel attacks.
  • Safety & individualisation matter: many cachexia drugs are off‑label; work with a team (oncology, cardiology, dietetics, physio).
  • Future looks brighter: first‑in‑class agents (ponsegromab, myostatin duals) are finally showing >3 kg lean‑mass gains in randomised studies.

This overview is for information only and is not a substitute for personalised medical advice. Discuss any intervention—especially off‑label biologics or hormones—with your treating specialist.

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#10

Do you mean it was ruled out after testing?

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#11

Am reading thru all. Thanks much. Your AI better than my chat gpt plus subscription. I want to respond point by point but first let me see what from this list of replies and roadmap i want to push for during tomorrows visit - ie i better use the energy for that first. Thanks again
(I just yelled at my chat gpt for not telling me much of this. It said it thinks its because it was accessing memory of my condition and wanted to be ultra cautious. I yelled at it some more…)

Another update

Here is the combo that fits best with my situation and constraints. Will twke me too long to explain why the others in the blueprint will not work

Leucine

Ponsegromab

Supervised
Resistance training

Test tnf alpha

Push again for fecal microbial transplant

Keep working on finding more nutrients body will tolersteegvtry increasing dose of maltodextrin

But doc tomorrow- or sny doc- will never agree to any of this.
My guess is they may offer what wont help - TPN and an aletite stimulant.

The beta angrenetgic pathway interesting- feels like i need to turn of excess Sympatheyic activation

Trying to keep the fury aside as i so so many times sought help for the pounds and muscle thst were flying away

And i notice no mention of mitochondrial dysfunction here, so not sure how effective some are n ny case.
Sometimes with mito dysfunction and blockages interventions that woukd work if youve got got mito functioning backfire because like the branch chain amino acids and arginine (and glutimine) may end up causing more ROS and not helping since vmcant be used

Studies do show growth factor tends to be low and cortisol trnds to be high in cachexia.

Lets see i look it up
And find Ponsegromab perfect for me- what are odds anyone woukd say- sure lets try it. Im afrsid im stuck with “standard of care” as so far the onky diagnoses related to this are “failure to thrive” and “post infectious IBS

So so far i see ionly the grim resper and i can choose to do it in hospital with an iv that wont help or at hone with chat gpt and confortable sheets.

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#12

@Vida if you think a major hurdle is getting your doctor to greenlight the tests and treatments you need, I think you should have a chat with @DrFraser here. Depending on insurance or the specialty needed, he might be able to help you clear some hurdles vis a vis access. And I’m sure he would offer valuable advice either way.

If you don’t get a breakthrough very soon, my advice would be to research the best hospital and just go check yourself there. This might mean hopping on a flight to Boston or NYC. A good AI model could even do the heavy lifting for you — give it all your symptoms, ask if for a list of specialists likely needed to unravel them, and to determine a shortlist of the best hospitals with the best access to the resources you need + best outcomes (if available).

Don’t give yourself up for lost!

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#13

Ponsegromab does appear to be the best single option, but it is currently in clinical trials and difficult to obtain. Bimagrumab is in a similar situation.

What country are you in? If you’re in the United States they did recently pass laws in some states for compassionate early access to drugs and you might be able to get access to it.

Additionally, Anamorelin, and MK677 (Ibutamoren) are indicated for cachexia.

You need to get to the hospital, get diagnosed so you know WHY you have cachexia. Once you get a diagnosis tell us, and also seek out specialists who can help treat that condition. And then you need to treat the cachexia as effectively as possible.

edit: I also recommend looking into digestive enzymes, betaine HCL and pepsin taken with meals. That’s very cheap and accessible to most people anywhere in the world and may help make nutrition more bioavailable to you.

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#14

Just my gut feeling but I’d buy a Kefir grain and start drinking Kefir, best with Nubian goat milk daily. I’d drink a quart a day, but then I’d weigh about another 50 lbs.

The drug would be fantastic, but still you need good food and microbiome.

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#15

Did your stool analyses include tests for intestinal worms and ova? If you lived in many third world countries where it’s endemic, a person presenting with ongoing weight loss and wasting despite adequate calorie intake would be tested for that up front. In the US, intestinal worms are not as rare as many doctors believe. And it often goes undiagnosed.

In the US, standard stool testing usually doesn’t include microscopy for multicellular parasites and ova. Or parasite screening is limited to unicellular parasites, and the lab doesn’t even make that clear. That means the doctor needs to separately order microscopy for “ova and parasites.” Such parasites can sometimes induce systemic inflammation and metabolic derangement leading to muscle and fat breakdown. T cells play a role in that.

Obviously there are other occult infections and conditions that can lead to cachexia like cancer. But since you mentioned bowel problems specifically, it’s probably something that should be screened for.

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#16

@Bicep Alkergic to milk. Have tried cow goatvsheep bufallo camel snd most recently horse. Thats why i so dedperately want to try human milk. In past before milk allergy i used to gain weight from milk products. Now it causes more weight loss from the allergy
So much for my trying a fourth of a teaspoon maltodextrin yesterday- today atypical lowe left pain

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#17

Yes, ive uses doctors data comp stool analysis which includes microscopy and 3 day sampling And have used genova gi effects tho they are not as good as DD for that. I this week am waiting for results of DOctors data again, this time their GI 360.

I continue to think its a combo of very lokg standin fat malabsorption piossubkt secondary to a mitochondrial issue both in liver and muscles and a madt cell problem reacting badly to man foods. Abd on too of that a destroyed microbiome. But cant rule out smsll intestine damage made worse by that fat loading episode. Inalso cannot rule out liver fibrosisiw. I had elevetstecalt ast and ggt for msny years- which suddenly have suspiciously returned to normal with ast a little higher than alt- usually a bad sign. The doctor today has expertise in liver snd will ask- but i cannot do a fibroscan. - i get sude effects from ultrasounds but no one believes me.

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#18

@LaraPo Did not have a colonoscopy but No overt or occult bloid in stools, inflammatory markers absent in stools, cologusrd negative, abdominal cat scan (without contrast) did not see any enlarged lymph nodes ir other signs. So not visual proof that its not colon cancer bumy colonoscopy but becomes very unlikely. If its cancer its more likely of the small intestine or sone otger gard to reach place. Ive wonderinered sbout is it nalt as well. Some of whsts going in has been there a long time but then accrlerated started nec 29023. I teied tobeat gealhier with milket and sweet pitat and my gut freaked out. That was start of spiral.

#19

Have you tried water kefir?

They’re easy to make. I put them in sugared water overnight, and drink in the morning. Then I reuse the kefir grains for the next day’s drink.

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#20

If you want to try keifer, as Bicep suggested, if you live in the US, here is some beyond yummy coconut keifer for you to order. I sadly can’t drink this daily due to the sat fat, but when I had it during my month long experiment, it was a very very happy month. FWIW, they were both great but I preferred plain over the vanilla
100 Trillion CFU

There are coconut water based keifers around, but in your case, I’d go for this one that is more calorie dense and extremely high quality … they even sell it at Stanford

(Oh, I just read that @JuanDaw JuanDaw shared how to make your own… this is something I’d love to do!)

It’s expensive, but for a short term boost of keifer/nutrition, hopefully you can swing it.

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