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My journey - Advice needed: CFS, SIBO, Digestive Issues, Stress, Eye Issues

Messages
5
Hello all, I'll try to keep this organized and as short as possible but needing help finding a potential missing link. I went from a happy, healthy 28 year old male to a shell of my former self, each year showing new symptoms and a new diagnosis. I've probably spent 10's of thousands of dollars in supplements chasing "the cure".

I understand everything below isn't necessarily related, but from reading the threads around here, I've learned you don't what you don't know! Some of the orthopedic / muscle issues I'm having I'm thinking could be driving ileocecal valve and digestive issues.

Before getting sick, followed Standard American Diet. Ate hardly any fruits / veggies, drank more than I should since college. Exercised plenty.

Work in manufacturing and have worked at a Flexographic printing company with lots of exposure to N-Propyl Alcohol and Acetate. Exposure through skin and breathing.

More than 5 Years Ago
0) Ulnar Nerve Transplant- had tingling burning in hands for years. Surgeon stated I had very small nerves after the surgery.
1) Raynaud's Diagnosis - by PCP. Complaint was cold hands and feed. Doctor squeezed my fingers, saw how long it took to return to normal color.

5 Years Ago

2) Dry Eye / Giant Papillary Conjunctivitis - Sudden Onset, had worn contacts for 15 years, and one day just couldn't wear them anymore. Went to multiple doctors, stopped wearing them, did steroid drops. Nothing worked. Have been wearing glasses since.
3) Herniated Disc / Sciatica - I went to a dr. thinking I had shin splints from running. I had tightness in my calf. Went to PT for 1.5 years and saw back specialists, neurologists. Nothing jumped out in MRIs, but the tightness in the calf never stayed better. I had a few weeks of terrible lower back pain off the right side of the spine. I continue to this day having very tight piraformis muscles.

4 Years Ago
4) Anterior Pelvic Tilt - Physical therapist told me I had quite severe APT. Changed jobs, moved, got engaged, and never really pursued trying to fix this issue.

3 Years Ago
5) Neuropathy in feet - Saw neurolgists. Multiple tests, routine bloodwork all normal. Would get intense burning in feet when standing on hard services especially with shoes that don't breathe well. Working in boots at factory was miserable. I'd be wearing flip flops as much as possible at home.

-Treated with epidurals, NSAID's

***November 2017 Massive Food Poisoning after eating out - Hospitalized ***

6) Vomiting - Few weeks after food poisoning at Christmas parties, after eating rich food or drinking a couple drinks, I'd wake up in the middle of the night 3am and vomit everything up.
7) Acid reflux - Saw first GI doctor for acid reflux. I'd be popping tums like candy before seeing the GI doctor who put me on H2 blockers, then PPI's. When complained of still having issues after months, doctor suggested it was all in my head!

Spring 2018
8) Developed bad rash around wasteline, buttocks, forearms. Dermatologist gave usual topicals and steroids. Came right back. PCP thought it was candida and gave Diflucan and it instantly went away.

Summer 2018
9) Bloating, constipation, food intolerances.

Fall/Winter 2018
10) SIBO - Methane dominant diagnosis from lactulose breath test. University hospital treated with broad spectrum antibiotics followed by Rifaximin. Felt good on antibiotics but felt terrible after stopping.

Spring 2019
- Started with functional doctor
- Treated with anti-microbials, pro motility drugs, probiotics
11) Stress/Depression- doctor said stress is impacting my healing. Recommended breathing exercises, exercise
12) Brain Fog
13) Chronic Fatigue Syndrome -
I used to work 12-13 hour days and be fine, at this point, by 6 hours through the workday I was fried and just mentally and physically couldn't wait to go home and just rest.

Fall 2019
14) Hydrogen Sulfide SIBO - my breath tests came back negative for SIBO, completely flat lined. Doctor said I was cured. I read online that's a sign of hydrogen sulfide SIBO. Whenever I eat sulfur rich foods, I have terrible sulfur smelling gas and get bloated. Doctor didn't believe it.


Winter 2019
15) Candida - doctor thought i had candida overgrowth due to white coating on tongue.

TODAY - SPRING 2020

Sypmtoms Still Dealing With

- SIBO/Candida/Food Intolerances - bloating and gas after eating certain foods
- Constipation (if I don't take Magnesium Glycinate daily)
- Stress - always a perfectionist, but ability to cope has continually gotten worse the longer I've been sick
- Acid Reflux - roared back out of nowhere after Flu/COVID19, I think I could have gotten a hiatal hernia but GI doctor and PCP don't think so.
- Anterior Pelvic Tilt / Sciatica - Wondering if this is related to Ileocecal and Pyloric valve dysfunction?


Current Medications

- Betaine HCL and Digestive enzymes with each meal
- Omega 3s
- Magnesium Glycinate

Recently stopped Zinc, Pure Formulations Immune Booster, Probiotics


Summary:

Otherwise "healthy" male with poor diet suddenly got dry eye and couldn't wear contacts 5 years ago. Told had small nerves from a surgeon. Developed suspected back issue that led to stopping running and on/off pain in lower right back and extreme muscle tightness in legs.

Food Poisoning episode led to digestive issue after digestive issue since end of 2017. Added stress/depression is impacting healing according to doctor.

Diagnosed from 2 different PCP's as having Raynauds.

Advice Needed:

I'm wondering is the eye/back issue somehow a nerve issue or something else that led to my digestive issues.

Where do I go from here?

I feel like the last 3 years of my life have been wasted, I've spent tens of thousands of dollars, and have done nothing to root cause solve my issues!
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
I wore contacts (rigid, not soft) for several years. Then my eyes got drier and I went back to glasses. That was before developing ME, so I think it's just one of those changes with age that happen to some people.

PWME seem to have had a wide range of diets and activity levels before developing ME. I haven't noticed any common element in the stories so far. ME develops at what seems to be random. Someday researchers might identify factors leading to susceptibility, but for now it just seems that some people are primed to trigger into ME and get stuck in that state.

Yes, it's common to spend years going from doctor to doctor, trying different treatments, with no improvement. The medical system simply doesn't have any reliable treatments for ME yet. Some of us manage to find some things that do work for us, but what works for one won't necessarily work for anyone else. You just have to experiment with lots of things and pay attention to what affects your symptoms.

Some of your medical problems might be know disorders with reliable treatments. Don't let the doctors write all your symptoms off as "It's ME: can't help you".


Food Poisoning episode led to digestive issue after digestive issue since end of 2017.

I had food poisoning too, but it cured me of type IV food sensitivity that I developed with my ME. Just shows that one person's treatment is another person's disaster, and vice-versa.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Fall/Winter 2018
10) SIBO - Methane dominant diagnosis from lactulose breath test. University hospital treated with broad spectrum antibiotics followed by Rifaximin. Felt good on antibiotics but felt terrible after stopping.

Fall 2019
14) Hydrogen Sulfide SIBO - my breath tests came back negative for SIBO, completely flat lined. Doctor said I was cured. I read online that's a sign of hydrogen sulfide SIBO. Whenever I eat sulfur rich foods, I have terrible sulfur smelling gas and get bloated. Doctor didn't believe it.

SIBO breath tests are not very reliable. Sensitivity means the accuracy of detecting true positives and specificity means the accuracy of true negative readings in tests. Source

“The sensitivity and specificity of the lactulose hydrogen breath test in detecting SIBO has been reported to be only 68% and 44%, and for the glucose breath test 62% and 83%
Source

If you had a lactulose breath test, then it's only about 44% accurate determining someone negative for SIBO. If you had a glucose breath test, it's much higher but still only around 80%, which leaves a 20% (1 in 5) margin of error.

***November 2017 Massive Food Poisoning after eating out - Hospitalized ***

Food poisoning can cause a massive disruption in the microbiome. Dysbiosis can and often does cause increased intestinal permeability, AKA a "leaky gut'. Where higher levels of toxins from gram negative bacteria in the gut, get into the bloodstream and cause systemic problems of all kinds.

These toxins and immune system activation from them, can cause or trigger autoimmune disease, cause chronic immune system activation, chronic low grade inflammation and lead to many other bodily dysfunctions.

I hope this gives you some food for thought. :)

Jim
 
Messages
5
SIBO breath tests are not very reliable. Sensitivity means the accuracy of detecting true positives and specificity means the accuracy of true negative readings in tests. Source

Source

If you had a lactulose breath test, then it's only about 44% accurate determining someone negative for SIBO. If you had a glucose breath test, it's much higher but still only around 80%, which leaves a 20% (1 in 5) margin of error.



Food poisoning can cause a massive disruption in the microbiome. Dysbiosis can and often does cause increased intestinal permeability, AKA a "leaky gut'. Where higher levels of toxins from gram negative bacteria in the gut, get into the bloodstream and cause systemic problems of all kinds.

These toxins and immune system activation from them, can cause or trigger autoimmune disease, cause chronic immune system activation, chronic low grade inflammation and lead to many other bodily dysfunctions.

I hope this gives you some food for thought. :)

Jim


Jim, did you happen to beat SIBO or heal a leaky gut? If so, was there someone you worked with or did you educate and treat yourself?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Jim, did you happen to beat SIBO or heal a leaky gut? If so, was there someone you worked with or did you educate and treat yourself?

I haven't beaten it yet but I'm gaining ground. No doctor, just a lot of learning -13 years worth to be exact:). As you are probably aware, sibo is not easy to beat, even with the best of treatments.

I have gone from about a 3 on the disability scale here, to a solid 6 and continue to slowly improve by treating my gut.

This is after being disabled with ME/CFS for 30 years. What really messed up my gut was 35-40 courses of antibiotics, over many years, starting from when I was just an infant, a couple of cases of food poisoning and a really poor diet.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Some interesting insights into SIBO in his article and suggests if you recurring issues, the underlying issue is not being addressed;
https://chriskresser.com/unanswered-questions-about-sibo/

Common denominator for having Raynauds and neuropathy in the feet can be that it is actually Small Fibre Neuropathy though and if that affects autonomic fibres, can cause issues of GI dysmotility and so can lead to having symptoms of SIBO from this too.
 
Messages
5
Some interesting insights into SIBO in his article and suggests if you recurring issues, the underlying issue is not being addressed;
https://chriskresser.com/unanswered-questions-about-sibo/

Common denominator for having Raynauds and neuropathy in the feet can be that it is actually Small Fibre Neuropathy though and if that affects autonomic fibres, can cause issues of GI dysmotility and so can lead to having symptoms of SIBO from this too.

Thank you for this insight! I'm going to research any connection between Small Fiber Neuropathy and SIBO. Even after researching SIBO for years you don't hear too many people beating it successfully, unless that's because those that do never come back to post again...
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Thank you for this insight! I'm going to research any connection between Small Fiber Neuropathy and SIBO. Even after researching SIBO for years you don't hear too many people beating it successfully, unless that's because those that do never come back to post again...
From what I can make of it anecdotally, antibiotics (or herbal eqivalent) looks to sort out SIBO in only a small percent of cases and suggests that more often than not, there are other underlying factors to it other than purely an imbalance in gut bacteria.

In many chronic conditions where SIBO occurs, there is also a high incidence of autonomic dysfunction associated with these chronic conditions so if a course of treatment doesn't sort a SIBO problem out, autonomic function testing is something worth doing to see if this is part of the issue. To that end, Small Fiber Neuropathy affecting vagus nerve function could be part of the problem.

Some autonomic function tests can be indicative of vagus nerve function but it typically involves having to see a Neurologist, to get testing done through an autonomic lab facility. For those in America though, some doctor's office's now have portable equipment to do a simple work up of your autonomic balance, either the ANX-3.0 Autonomic Monitoring System or a Vital Scan product.

http://www.vitalscan.com/dtr_ans.htm

http://www.ans-hrv.com/wp-content/uploads/sites/5484/2017/08/AnsarScience.pdf

https://www.sciencedirect.com/science/article/pii/S2095754815000228
Excessive parasympathetic responses to sympathetic challenges: a treatable, hidden, dynamic autonomic imbalance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/
Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth

https://onlinelibrary.wiley.com/doi/full/10.1111/nmo.13810
Autonomic function in gastroparesis and chronic unexplained nausea and vomiting: Relationship with etiology, gastric emptying, and symptom severity (GI dysmotility study utilising the ANX-3.0 Autonomic Monitor to determine severity of gastroparesis)

You said in your intro post that you had 2 neurological conditions, I'm interested to know what they are/were and what antibody testing you have had in the work-ups for these conditions.