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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Comprehensive Circulatory Metabolomics in ME/CFS Reveals Disrupted Metabolism of Acyl Lipids and Steroids (Germain, Levine, Hanson, 2020)

Mary

Moderator Resource
Messages
17,291
Location
Southern California
Last 7 days, I was able to travel 48 hours and visit a foreign town, push my husband wheelchair and help him walking, and back to work on Monday I was able to cope with a new software at work, working up to ten hours a day….And got no payback, no PEM from all that. I'm still waiting for a bad backlash and can't see it happening.
I though I would need cortisone to cope with this difficult week, but I took none.:woot:
@pattismith - That is more than amazing! I hope you continue to do well - please keep us posted! :nerd:

Have you considered starting a thread about your improvement?
I think this would be a great idea! :thumbsup:
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
Also I don’t know that I’m allowed to provide the source but a very trusted boutique supplement shop I use sells and I have bought a Palmito and Stearoyl (sp?) Phosphatidylcholine supplement. What was missed in the analysis is these cholines help to keep the Cardiolipin composition of the cell mitochondrial membranes more towards saturated as opposed to unsaturated, and this *may* affect PDH function. I’ll have to find the source on that but having a more saturated membrane is supposed to improve Mito function.
@SlamDancin - You are allowed to provide the source where you buy supplements. People do it all the time. The only caveat is that members aren't allowed to provide links to products or companies in which they have a financial interest - members are not allowed to make money off of other members here.
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
I think most ME/CFS patients should get tested for mitochondrial antibodies (m2), which is implicated in the development of Primary Biliary Cholangitis - a disease that mirrors a lot of the same symptoms as ME/.CFS in the early stages.
@ShepherdK - medinenet.com says primary biliary cholangitis is likely an autoimmune illness, and the Mayo Clinic says that researchers believe a combination of genetic and environmental factors trigger it, but nobody knows for sure what it is or what causes it.

So I don't know if this has any connection with PBC, but when my health first started going south, before I actually started crashing, at one time I started feeling fluish, tired, digestion off. The doctors of course could find nothing wrong. I stumbled across a chiropractor who does muscle testing, I had nothing to lose except for $50 and the doctors were useless, so I let the chiro do his testing and he told me that I had a plugged bile duct. I knew almost nothing about digestion or how my body worked at this time, it was early days. I remember he gave me collinsonia root and choline, and within a few days I started to feel better. I forget how long I took these supplements but that problem didn't recur, although others showed.

At one time my digestion was seriously impaired (this was after I started crashing) - I felt very sick, couldn't eat until after noon, and the chiro again found the problem - my liver was overloaded with toxins. I'd had a job when I was 19 where I had heavy exposure to acetone (we washed our hands in it!) Anyways, eventually I did a liver detox under the supervision of my chiropractor - it took a month and was a bit rough, I felt like crap the entire month but I stuck it out and am very glad I did. Also with the chiro's help I discovered I was low in stomach acid and started taking betaine HCL with pepsin which helped a lot, and also started taking milk thistle, which I still take. Prior to the liver detox, one glass of wine would make me sick for an entire day, and 2 glasses would me sick for 2 to 3 days. AFter the detox, I was able to tolerate wine in moderation, and still am.

I also had gall bladder problems which the chiro helped with as well (Betafood by Standard Process worked wonders)

So I had a lot of digestive problems early on, some apparently related to environmental toxins. Unfortunately, getting my digestion sorted out did not do anything for PEM, etc, although my digestion is in good shape now, for which I'm grateful.

But I'm wondering if the chiropractor had never helped me with all these issues, perhaps I would have gone on to develop something like PBC? I can almost guarantee doctors would have removed my gallbladder, rather than knowing how to save it. I'm really aware now of my digestion, I still take betaine HCL with pepsin. I think many here do need it, low stomach acid does seem to be very common with ME/CFS, and I know it's reflected on one of the charts shown earlier int his thread.
 

pattismith

Senior Member
Messages
3,926
@pattismith - That is more than amazing! I hope you continue to do well - please keep us posted! :nerd:

I think this would be a great idea! :thumbsup:
Hello Mary,
unfortunately after one good month it stopped working and I stopped Tibolone. I started bleeding and the pain came back at the same moment, very similar to my ancient dysmenorrhea.
But any good day, or good week I can have are gifts that help me going through the bad days. There was a time (years ago), where I knew only bad days, and I remember how hard it was.
I now know autoimmunity, autonomic nervous system defect and small fiber neuropathy are involved in my disease, so I guess the good days can be either the result of my experiments or the natural variation of the disease; It's hard to say sometimes!
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Prior to the liver detox, one glass of wine would make me sick for an entire day, and 2 glasses would me sick for 2 to 3 days. AFter the detox, I was able to tolerate wine in moderation, and still am.
Adverse reaction to alcohol is a very common feature of ME/CFS which does suggest an underlying problem with the liver and/or stomach. Sounds like you got some good advice early on in your illness @Mary .
I now know autoimmunity, autonomic nervous system defect and small fiber neuropathy are involved in my disease, so I guess the good days can be either the result of my experiments or the natural variation of the disease; It's hard to say sometimes!
I dont think its the natural variation of the disease @pattismith you seem to have come up with a reason for your symptoms and found things that help. A month of feeling a lot better is a lot. Might work again in the future if you give it a try.
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
unfortunately after one good month it stopped working and I stopped Tibolone. I started bleeding and the pain came back at the same moment, very similar to my ancient dysmenorrhea.
I'm sorry to hear this, but I know how good days can help get through the bad days! There are times when I actually feel well, and it helps me believe that underneath everything, my body is still capable of health.

I wonder if bio-identical hormones would help you? From what I understand, Tibolone is a man-made substance, and not bio-identical to what our bodies produce or need.
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
Adverse reaction to alcohol is a very common feature of ME/CFS which does suggest an underlying problem with the liver and/or stomach. Sounds like you got some good advice early on in your illness @Mary .
I think I was extremely fortunate to find the chiropractor. I've posted about this before - toxic liver - in relation to alcohol intolerance but no one ever seemed to pick up on it. I can drink alcohol like a normal person now without ill effects, only I can't actually because of the calories! :eek: But more importantly, my digestion is in good shape. One of the first things the chiropractor told me was that I had to get my digestion sorted out before trying supplements - if I couldn't absorb nutrients properly, none of the supplements would help.
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
Adverse reaction to alcohol is a very common feature of ME/CFS which does suggest an underlying problem with the liver and/or stomach. Sounds like you got some good advice early on in your illness @Mary .
I don´t think that the interpretation with the liver is right, at least not in my case.

I now can´t drink any alcohol (as I couldn´t when I was in a certain stage of my pre-ME/CFS condition). But only last year I could drink alcohol, and even as much as I wanted (which was mostly not much though).
 

mariovitali

Senior Member
Messages
1,214
@Mary


I didnt have the time to look at all your messages. FWIW we should keep in mind that there is a bi-directional association between the gut and the liver (and i would also say the stomach).

This is what "enterohepatic" circulation is all about. Just think about friends that had a cholecystectomy and how some of them feel after eating a fatty meal. Some of them may get bloated, have diarrhea etc.

Another factor is gut microbiota. Everyone is talking about them but no one says that Bile acid problems can affect the gut microbiome (also the opposite is true - bidirectional relationship here as well)

Did you ever have a test called "Total Bile Acids" by any chance?
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
Did you ever have a test called "Total Bile Acids" by any chance?
No, I haven't. My health care providers have been spotty at best. I've gotten the most help from my chiropractor, and also a rare orthomolecular MD who was extremely knowledgeable about nutrition, etc. and believed I was ill, even though he didn't know what was going on, but unfortunately he died a few years ago.
 
Messages
73
Location
Richmond, VA
@ShepherdK - is it possible to explain briefly what p-value and impact score mean? e.g., glutathione metabolism has an impact score of 0.01, which doesn't sound like much at all, but I don't know how to read that number, whereas taurine has an impact score of 0.51. And if it's not possible to dumb it down for a non-scientist, no worries!

Sure!

The p-value is the statistical significance of the test. The lower the p-value, the higher the probability that what is being measured is statistically significant against a set of controls. A p-value less than 0.05 is considered statistically significant, however results that come in above that p-value may indicate a weaker correlation.

The "Impact Score" is something the author of this paper made up. From the supplementary files: "the impact score indicates the pathway impact on the health of the subjects based the affected metabolites within the pathway as well as the abundance differences between controls and patients." It appears that higher numbers equals a greater overall impact to the health of that patient, probably based on evaluating whether or not key biological processes are being inhibited or upregulated.
 

Rufous McKinney

Senior Member
Messages
13,197
An issue with digestion I am dealing with is: temperature of foods.....

Digestion can be impaired if one consumes something cold......Which I recently did....(coconut dream dark chocolat, not very much...a little. ). Particularly so in my particular body.

Eating outside of the "digestive window"...there seems to be such a window...nibbling on something late...can cause all my digestion to go off.....something going thru AFTER the basic digestive cycle was launched.
 
Messages
6
@Mary


I didnt have the time to look at all your messages. FWIW we should keep in mind that there is a bi-directional association between the gut and the liver (and i would also say the stomach).

This is what "enterohepatic" circulation is all about. Just think about friends that had a cholecystectomy and how some of them feel after eating a fatty meal. Some of them may get bloated, have diarrhea etc.

Another factor is gut microbiota. Everyone is talking about them but no one says that Bile acid problems can affect the gut microbiome (also the opposite is true - bidirectional relationship here as well)

Did you ever have a test called "Total Bile Acids" by any chance?

@mariovitali

hello! I have been trying to get into contact with you for a while ever since I found you on various forums.
I believe you could help me. In summer of 2016 after rapid weight loss (eating mostly vegetables and doing excessive cardio) I lost 36lbs in about 1.5 months. My health/well being declined fast. I was just soo happy that I was getting ripped/lean I did not pay attention to what was happening. Over the months I developed a whole bunch of symptoms (loss of libido, numb genitals, low semen volume and force, anorgasmia, loss of morning and spontaneous erections, severe restless leg syndome, dry eyes, horrible armpit odor, light brown toxic smelling stools, stress incontinence, cold genitals, tight scrotum and more.

I have seen multiple doctors, neurologists, neurogsurgeons, endocrinologists, urologists, and after 3 years I have no answers to what happened to me. I started to search the web and came across Post finasteride/post accutane, ssri, and ce/mfs forums. I found people with identical symptoms. I watched a video on youtube that says accutane causes cholestasis in those that are suffering from permanent side effects. I have elevated cholesterol 7.1 and elevated ldl. Billirubin and liver enzymes are high one month, then normal the next and back and forth. Hormones look ok, besides low dht 176 (350-850) and lowish e2 12 (11-45)

I have got my ALP checked (normal) and currently have to wait 2 weeks for bile acids results. I was contacted by another fellow who said he got these "post finasteride syndromes" also after rapid weight loss . He never took finasteride/accutane/ssri either? We are trying to solve this for the last 2 years. Some days my face, and body are really itchy. Some days not so much.Please get back to me, I would appreciate it.

I
@Mary


I didnt have the time to look at all your messages. FWIW we should keep in mind that there is a bi-directional association between the gut and the liver (and i would also say the stomach).

This is what "enterohepatic" circulation is all about. Just think about friends that had a cholecystectomy and how some of them feel after eating a fatty meal. Some of them may get bloated, have diarrhea etc.

Another factor is gut microbiota. Everyone is talking about them but no one says that Bile acid problems can affect the gut microbiome (also the opposite is true - bidirectional relationship here as well)

Did you ever have a test called "Total Bile Acids" by any chance?
__________________________________________________________________________________


Hi, @mariovitali

I have been trying to contact you after reading your posts on various forums including this one. In summer of 2016 I decided to go on a crash diet, where I lost 36 lbs in 1.5 months (rapid weight loss) I was in such a fog that since I was working my first job (construction laborer) I had no idea what was going with me and it took me 4 months to realize what had happened. I was doing excessive cardio every day as well and eating mostly vegetables and black coffee.

I noticed eventually that I lost all feeling in my genitals (rubbery feeling) complete loss of libido, low semen volume and force, anorgasmia, tight scrotum, restless legs, dry eyes, light colored stools, body odor changes, lack of sweat from armpits, loss of morning and spontaneous erections. It has been 3.5 years of these symptoms and only the restless legs have resolved. I have seen dozens of doctors with no diagnosis. I started searching on the internet and found post finasteride syndrome, post accutane syndrome, ce/mfs, post ssri etc...

Here is where it gets interesting. I never took any of those drugs and my symptoms came on after the change in diet/rapid weight loss. I was contacted on another forum by a fellow who said he was shocked to see my story, as the same thing happened to him! Change in diet/Rapid weight loss gave him PFS like symptoms. Only diagnosis he had was Gallstones were doctor told him we have "succesfully" living without a gallbladder

All of my hormones are fine accept for DHT being low 176 (350-850) Cholesterol is always elevated 7.1 (>5,0)
LDL also elevated. Billirubin and liver enzymes are one blood test elevated, the next one fine, and back and forth. I have had elevated DHEA-S, and Uric acid as well. Please get into contact with me as I feel like you are very knowledgable in what happened to us.

There is a video I watched on Accutane that says it causes CHOLESTASIS/impaired bile flow. So I decided to google cholestasis and it is diagnosed with alp (alkaline phosphatase and Bile acid test) I rushed to get these checked and sadly ALP levels were normal, I have to wait for my bile acid results for 2-3 weeks since they are done in Germany.
 
Messages
6
@mariovitali
I have contacted you on propecia help as well (joey10 user). I am unable to send you a private message, I can't find the option?
Did you have this 'syndrome" ?
Are you cured?

It looks as if its an issue with the gallbladder/liver/bileflow as I have found others who never took the drug have these symptoms with gallstones.