u/Pomelo_Amazing

has anybody tried the faecilbacterium prasunitzii probiotic from designsforhealth brand? want to hear experiences about this

I’ve got a stubborn gut dysbiosis that’s driving a systemic health crisis. I’m working with doctors but looking for community experience while I wait.

The overgrowth: Citrobacter diversus

The collateral damage:

· Butyrate is low (10.2%, ref 11.8–33.3%)

· Faecalibacterium prausnitzii is critically low

· Lactobacillus and Bifidobacterium are below detection limit

· Acetate is high, typical of sulfur‑reducer dominance

What I’ve already tried:

· Saccharomyces boulardii + L‑glutamine (improved diarrhea)

· Sodium butyrate (started recently, seems to help)

The dilemma:

I need to clear the Citrobacter without further decimating my already depleted beneficial flora. I’m concerned that broad‑spectrum antibiotics (tetracycline, etc.) will worsen the dysbiosis long‑term.

Question for this sub:

Has anyone successfully treated a Citrobacter overgrowth?

Note: Just looking for real‑world experiences in the meantime.

does anyone have any good doctor recs in the united states for plasma infusions?

has anyone in here with deficiency received fresh frozen plasma temporarily to restore their ceruloplasmin levels?

anyone here know of any good doctors that handle copper deficiency / disorder patients?

if you have ALS, to any experienced neuromuscular specialist, its obvious, if its not obvious at first, it will be in a couple months, the disease is only insidious for such a short time before the hallmark signs are apparent. The stories you hear about are usually due to shitty neurologists who dont want to deal with it and send patients out the door. I was standing in an elevator on my way to a neurologist appointment and the gentlemen in the elevator next to me had ALS. Its not subtle by any means, if it is subtle an EMG or NFL will pick up on it long before you feel the rapid breakdown and symptoms, because the dead neurons are what cause the symptoms. if you are on year 4 of ALS scare in the gym wondering why you get tired a little easier after a set and you come to this subreddit, you need psychological help. There are many many many many conditions that all can cause asymetrical weakness, spasticity, fasiculations (ALS fasiculations are accompanied by neurogenic changes on emg in a widespread pattern), and so on. Not all are the rapid rolling blackout of your motor neurons. I have a condition that mimics ALS yet it is caused due to the fact that my liver does not send copper to my body and nervous system and my neurons experience energy failure and it creates leisons within my pyramidal tracts, so both my neurons are metabollically failing due to lack of a myelin sheath intergrity and the roads they ride on are failing at the same time. but on top of that i have severe sensory symptoms and vision issues. If this disease scares you, find a promising ALS drug theraputic manufacturer or research org and donate some money to them. Channel that fear energy into something positive, back in the day, the flu was a death sentence. don’t be scared, and live your life.

anyone have any good subreddits for complex medical issues outside of this one?

looks like i have a very complex issue, anyone know whats going on?

copper serum total: 58 to 68 with heavy supplementing to 61

cerluoplasmin 17 flat

urine copper 24 hr <5

neutrophils 1.6

spleen enlarged

alt 60 to 80 to 85 to 178 after starting oxcarbazapeine and tizanidine

ast 35 to 60 normal to not normal

NEGATIVE KF RINGS EYE EXAM

creatine kinase 88

Zinc Normal (i took 30 mg of zinc for 24 days before symptoms started in august of 2025 and then got covid) (zinc had returned to normal levels and its a been a long while since i had zinc)

Ferritin Normal

Absolute Neutrophil 42%

Vitamin D low at 20 (now supplementing, deficient for 15+ years)

Vitamin A high (supplementing but stopped)

Celiac Disease Testing Negative

LIVER

Hepatitis A Total Antibody: Positive

Hepatitis A Igm: Negative

AST: 35 normal

protein total: 36 normal

albumin: 4.9 HIGH

bilirubin: 0.6 normal

alkaline phosphatase: 64 normal

globulin: 2.6 low

A/G Ratio: 1.9 HIGH

Liver Ultrasound: Normal

Liver biopsy Normal No Abnormal Copper Deposition, No abnormal iron deposition, No abnormal metalltheonein trapping 

copper dry weight quantification mildly elevated 54 ref range <50

Iron: 125 Normal

Wilsons Disease Genetically Excluded through ATP7B sequencing

GI workup the Genova Diagnostics GI profile showed mild gut dysbyosis.

looks like i have a very complex issue, anyone know whats going on?

copper serum total: 58 to 68 with heavy supplementing to 61 (ref range 70-140 ug/dL)

cerluoplasmin 17 mg/dL flat (ref range 20-60 mg/dL)

urine copper 24 hr <5 (ref range 15-60 mcg)

neutrophils 1.6

spleen enlarged

alt 60 to 80 to 85 to 178 after starting oxcarbazapeine and tizanidine

ast 35 to 60 normal to not normal

NEGATIVE KF RINGS EYE EXAM

creatine kinase 88

Zinc Normal (i took 30 mg of zinc for 24 days before symptoms started in august of 2025 and then got covid) (zinc had returned to normal levels and its a been a long while since i had zinc)

Ferritin Normal

Absolute Neutrophil 42%

Vitamin D low at 20 (now supplementing, deficient for 15+ years)

Vitamin A high (supplementing but stopped)

Celiac Disease Testing Negative

LIVER

Hepatitis A Total Antibody: Positive

Hepatitis A Igm: Negative

AST: 35 normal

protein total: 36 normal

albumin: 4.9 HIGH

bilirubin: 0.6 normal

alkaline phosphatase: 64 normal

globulin: 2.6 low

A/G Ratio: 1.9 HIGH

Liver Ultrasound: Normal

Liver biopsy Normal No Abnormal Copper Deposition, No abnormal iron deposition, No abnormal metalltheonein trapping 

copper dry weight quantification mildly elevated 54 ref range <50

Iron: 125 ug/dL Normal (ref range 60-140)

Wilsons Disease Genetically Excluded through ATP7B sequencing

GI workup the Genova Diagnostics GI profile showed mild gut dysbyosis.

anyone in here that is unable to get their ceruloplasmin levels up ever had fresh frozen plasma infusions?

Does anyone know of any good telehealth platforms for providers that would be able to order genetic testing panels from Invitae?

I’m currently navigating a complex copper/ceruloplasmin deficiency where my liver seems to be having trouble "loading" copper (my serum Cp is stuck at 17, but my system is hypersensitive to free copper/ionic intake). My liver biopsy revealed no abnormal copper or iron deposition, still waiting on dry weight and MT IHC stains and had a negative ATP7B, i say all this to say, its not wilsons.

my current levels are:

58 ug/dL (ref 70-140)

ceruloplasmin 17 mg/dL (ref 20-60)

<5 mcg/ 24 hr (ref 15-60)

I have a few questions for those who have been through this and successfully restored their levels:

1**:** Did you notice that your serum copper levels responded faster than your ceruloplasmin levels? How long did it take for the two to "re-sync"?

2: What was your clinical strategy? Did you rely on oral supplementation, or did you require an alternative approach (like IV or parenteral) to bypass gut/liver transport issues?

3: Did you experience temporary "nerve storms" or symptom flares when your levels began to rise? If so, how did you manage them?

does anyone get like a lactic acid deep muscle or bone pain after supplementing? Its not like a sharp pain but more of an ache, its not too worrying, just strange. Ive also been getting feelings of random muscle heat.

I absolutely love the dreamcast but I alwasy felt it was self-limiting in the way the controller was designed with only one joystick. The VMU was awesome no doubt but everything else ehhh.

a little over 7 months ago i started posting in here as i was having symptoms consistent with ALS and have gone through the tiring loop of the american medical system including 5 neurologists (my latest one being a godsend) and progressed to have speech issues, fasiculations that never ever stop 24 hours a day, atrophy of my hands legs all of that, and spasticity in my flexors. I truly in my heart believed that this was ALS and there was nothing else that would describe or fit the bill with my symptom pattern. But I was wrong, my 5th neurologist finally checked something no other neurologist had, my copper levels, which were low across the entire board. To have a copper deficiency is rare, probably almost as rare as ALS, but I had it, and on top of it I had copper deficiency myeloneuropathy as my motor neurons were metabollically stressed causing a mimic syndrome (plus optic nerve issues like flashes of light and painful eye movements). I had doctors leading up to this tell me it was anxiety, give me antidepressants and ask me “when am i going to believe them”. Well dickheads when you come up with an answer for these progressive neuromuscular on one side of my body symptoms that isn’t the disease we all dread and fear. I thought it would be as easy as supplementing copper but I threw up everytime and had constant diarrhea and my levels didnt budge so i had to heal my gut and liver and fix all of that as well before seeing meaningful stabilization. The body and nervous system are fragile, with this whole experience I have developed PTSD as i slowly lost my ability to do things like walk as i started limping, speak as i started off with a stiff tongue then the slurring of my words the whole 9 yards while all the doctors around me told me there was nothing wrong that they could see. I have firsthand experienced what these patients go through and I owe my absolute fucking life to curing ALS after what I’ve been through and plan to start a nonprofit focusing specifically on developing new theraputics. I have been through hell and back and just wanted to share my story as its the last time ill be on this subreddit. I wish you all well.