• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Pancreas, Gallbladder and CFS

Cort

Phoenix Rising Founder
A complilation of posts on this issue
Originally Posted by klutzo
Hi all,
Just want to let you know it turned out not to be the B12 protocol that was causing all my nausea, shaking, insomnia, tachycardia, and high blood pressure.

It was my failing pancreas. I spent some time in the ER and had some tests, and results showed that what little is left of my pancreas is digesting fat even less than it did at the start of treatment now, despite more than 600 prescription enzymes per month. That easily caused all those symptoms.

By cutting my calories to 1,000 per day and my fat grams to only 20 per day, instead of the 60 grams my doctor says I should be able to handle with the enzymes, I am slowly feeling better.

And, I've easily been able to start right out taking an entire metafolin tablet, the B-Right, and the ADB12 daily with no side-effects. I will be adding the MB12 soon. The only reason I have not added it yet is that there doesn't seem to be enough time in the day, since I am still sleeping late from the extreme weakness from not digesting any nutrients for so long.

I don't want to take B vitamins in the evening because I was taught when studying Naturopathy that they might keep anyone awake if taken that late. I guess I can try putting AB12 and MB12 under my lip at the same time......never thought of that.

My focus is on my pancreas now, since I won't be doing any protocols on this plane of existence much longer if my doc can't get the darn thing to function better.

However, I wanted to let you know, since it was not fair to blame this program for the symptoms in my case. This is not meant to imply that anyone elses' problems are not valid. I am sure they are. We are all different.

Hi Klutzo,

I had a friend who cared for a friend of his with pancreatic problems before he died. If you IM me on it we can talk about what he found that worked for her.

I am sorry to hear of the severity of your problems. I'm afraid this comes under the co-morbidity problem heading. It's good to know that it isn't the vitamins causing a problem. 20 gr isn't much fat. How does one's pancreas get into this condition?

There is no problem taking both kinds at the same time. It might even work better.

klutzo
Senior Member


The pancreas in CFS and Lyme
Hi Fred,
According to Dr. Byron Hyde's CFS study, pancreatic failure is the #3 cause of death in CFS. Also, due to extreme dominance of the sympathetic over the parasympathetic nervous system, Lyme patients who are seeing knowledgeable doctors are told to take enzymes, because this ANS imbalance will produce both maldigestion and malabsorption. Then there is Dr. Sarah Myhill, who has written an excellent paper on how the presence of viruses, parasites, and bacteria in the small bowel of almost all CFS patients (this has been found in FMS too) can get bad enough to stop the pancreas from producing enzymes. The treatment for that involves 3 things, two of which I am deathly allergic to, so there is no point in pursuing it, except to shore up my immunity as best I can. I have also used herbals.

In my case, my GI doctor believes that my obvious gallbladder symptoms were ignored for years because my tests kept coming back normal. 80% of Lyme patients lose their gallbladders. The pathogen love cholesterol. After almost ten years on OTC enzymes, plus being told I had gastroenteritis over and over in the ER when tests came back normal, my doctor ran a special test to prove I had gallstones called an EGD with biliary microscopy. It cost as much as the gallbladder surgery that I had immediately, when the test proved I was full of tiny stones. These stones had been backing up in the ducts for years, and when I ate and my pancreas made enzymes, the enzymes could not get out and ate my pancreas instead. Since the enzymes could not get out, I took more and more OTC enzymes. After the gallbladder was removed, my symptoms improved for awhile, but then came back full force, which is when I was diagnosed with severe exocrine pancreatic insufficiency,a condition that takes an average of 20% off your lifespan, even when properly treated. The symptoms of the condition are pretty gross, so I won't list them here. If anyone has a similar history to what I just described and a strong stomach, PM me and I will describe what would be happening if you had this problem.

Thanks for letting me know I can take both forms of B12 at once. I will PM you about your friend.


jenbooks
Senior Member


Klutzo
What were your gallbladder symptoms?
What is the name of the test you got?

#448
Yesterday, 01:37 PM
Freddd
Senior Member


Originally Posted by klutzo
Hi Fred,
According to Dr. Byron Hyde's CFS study, pancreatic failure is the #3 cause of death in CFS. Also, due to extreme dominance of the sympathetic over the parasympathetic nervous system, Lyme patients who are seeing knowledgeable doctors are told to take enzymes, because this ANS imbalance will produce both maldigestion and malabsorption. Then there is Dr. Sarah Myhill, who has written an excellent paper on how the presence of viruses, parasites, and bacteria in the small bowel of almost all CFS patients (this has been found in FMS too) can get bad enough to stop the pancreas from producing enzymes. The treatment for that involves 3 things, two of which I am deathly allergic to, so there is no point in pursuing it, except to shore up my immunity as best I can. I have also used herbals.

In my case, my GI doctor believes that my obvious gallbladder symptoms were ignored for years because my tests kept coming back normal. 80% of Lyme patients lose their gallbladders. The pathogen love cholesterol. After almost ten years on OTC enzymes, plus being told I had gastroenteritis over and over in the ER when tests came back normal, my doctor ran a special test to prove I had gallstones called an EGD with biliary microscopy. It cost as much as the gallbladder surgery that I had immediately, when the test proved I was full of tiny stones. These stones had been backing up in the ducts for years, and when I ate and my pancreas made enzymes, the enzymes could not get out and ate my pancreas instead. Since the enzymes could not get out, I took more and more OTC enzymes. After the gallbladder was removed, my symptoms improved for awhile, but then came back full force, which is when I was diagnosed with severe exocrine pancreatic insufficiency,a condition that takes an average of 20% off your lifespan, even when properly treated. The symptoms of the condition are pretty gross, so I won't list them here. If anyone has a similar history to what I just described and a strong stomach, PM me and I will describe what would be happening if you had this problem.

Thanks for letting me know I can take both forms of B12 at once. I will PM you about your friend.

klutzo

Hi Klutzo,

when the test proved I was full of tiny stones

You have my attention. I had my gall bladder out in 1995. The surgeon commented on how unusual it was. He said it would have made a good black jack. The bladder was a bladder no more but quarter inch thick scar tissue completely packed with sand sized gallstones. I had one extremely severe unidentified episode with 6 or 7 NDE experiences (very interesting though) one terrible night, and then a little later a clearly identifiable gall bladder attack that landed me in the ER at 1 am. I had it removed 3 days later and it helped a lot. I would be interested in finding out the symptoms. The gall baldder itself may have suffered physical trauma in a car wreck from the seat belt catching me under the ribs on the right side. A constant pain for 23 years in my left back under the shoulder blade intensified with the surgery and disappeared after 10 days. The only presurgery test I had specificly for the GB other than some blood tests was ultrasound imaging which looked strange but indicated it should come out. Starting in about 1989 my liver enzyme blood tests were high.

Gall bladder questions have come up at another forum. WOuld you be willing to post your story there?


klutzo
it is
Symptoms and tests
Hi Jenbooks,
My gallbladder symptoms were stabbing upper right quadrant pain going around to the back under my ribs, swelling of the stomach, esp. on the right side, bone deep chills that kept me awake all night, shaking and nausea, and steatorrhea, starting about an hour after eating dinner or waking me up from a sound sleep. Most GB attacks start between 11 pm and 1 am, which is the time when the GB cleans itself out. I could not sleep on my right side at all, and some foods were guaranteed to provoke an attack, esp. eggs. 95% of all gallbladder sufferers react to eggs.

The tests I had that came back normal were 3 ultrasounds of the gallbladder and 2 HIDA scans of the gallbladder.

The test that finally showed the stones is an EGD with biliary microscopy, which requires you to be under anesthesia and the passage of a lighted tube down into your stomach. It has biopsy attachments. In this case, they inject something into your IV that makes your gallbladder emit fluids. If they see crystals, they know you have stones. I was told that small stones like I had cause the most trouble.

klutzo

klutzo

Hi Fred,
Since your GB ended up being like a big scar, I would bet that car accident injured it a lot.

I would LOVE to hear about your NDEs. Anything metaphysical is right up my alley. I will PM you on that since it has nothing to do with this thread.

I will post the info on another forum if you give me the URL, etc.

I will PM you the symptoms of pancreatic insufficiency. Do not read them while you are eating!

A very good web site for the truth about gallbladders and how they are not really an unnecesary organ is www.gallbladderattack.com.

40% of people continue to have problems after surgery, esp. middle-aged females, and as my acupuncturist said, a gallbladder problem is really a liver problem. If you have an imbalance between bile and cholesterol, your liver can still produce stones, which can come down and get stuck in ducts, requiring surgery and causing symptoms. I take silymarin in my multivitamin daily now to help my liver. I am hoping the TMG will help it also, since it is used in naturopathy to treat fatty liver.
 

Cort

Phoenix Rising Founder
Part II

The Compilation Continues:

jenbooks
Senior Member

Gallbladder NDEs etc
Actually if Freddd didn't mean he almost died but meant he had classic NDE's can he please start a thread about that (separate) as I'm very interested, too.

Well I don't have symptoms like that and eat 3 eggs for breakfast every morning but I still feel lyme & co has done a # on my gallbladder & liver. Sometimes I get headaches with a feeling of congestion there. I feel my hbot chamber has helped the issue. I have considered liver flushes and cleanses but never did one. Often drinking hot water with lemon helps.


islandfinn

gallbladder and pancreas
Originally Posted by klutzo

According to Dr. Byron Hyde's CFS study, pancreatic failure is the #3 cause of death in CFS. Also, due to extreme dominance of the sympathetic over the parasympathetic nervous system, Lyme patients who are seeing knowledgeable doctors are told to take enzymes, because this ANS imbalance will produce both maldigestion and malabsorption. Then there is Dr. Sarah Myhill, who has written an excellent paper on how the presence of viruses, parasites, and bacteria in the small bowel of almost all CFS patients (this has been found in FMS too) can get bad enough to stop the pancreas from producing enzymes. The treatment for that involves 3 things, two of which I am deathly allergic to, so there is no point in pursuing it, except to shore up my immunity as best I can. I have also used herbals.
hi klutzo
so sorry to hear your news. Hope the immunity boosting etc will re-stabilize you. I saw an amazing documentary once on the body's ability to reprogram itself. A woman whose spine had been severed had lost all feeling and movement from mid-waist down. 7 years later she regained the ability to feel sexual pleasure - her body had developed new pathways to her brain. I hope your pancreas and body can quickly figure out some similar type of rewiring!

I had never heard this before. Thank you for continuing to share your information.

Quote:
Originally Posted by jenbooks
Actually if Freddd didn't mean he almost died but meant he had classic NDE's can he please start a thread about that (separate) as I'm very interested, too.
add my request to this. I too get gall bladder symptoms at times - twice to the ER. Still haven't had it out as it mostly doesn't bother me + have concerns about surgery - general anaesthetic contributed to the first major, long lasting crash and can't handle it well, would like to keep an organ if it still works, numerous friends have had it out only to have the pain continue......

I use turmeric every day for the curcumin's anti-inflammatory properties among other reasons. However, have gotten a few gb twinges since starting it. Found a study (can't find it now), Japanese I think, that said that curcumin causes gall bladder twinges.

best
islandfinn

yeah

Jenbooks,
I have not had antibiotics, but I understand that the main reason Lymies lose their gallbladders at such a high rate is as a side-effect of the IV Rifampin that most late-stage Lymies need to take. For that reason, Actos or Ursodiol is often prescribed simultaneously with the Rifampin. I take Ursodiol now to help prevent severe bile reflux that developed after my GB was removed.

It does not sound like you are having a GB problem. Your liver is most likely toxic, since Borrelia produces the most potent endotoxins known to man. Maybe that is what you are feeling.

Liver cleanses are scary to me. I've done two, but the severe pain with the last one scared me away from any more. It can bring stones down into ducts that are made of calcium instead of cholesterol, and that can result in emergency surgery. 90% of stones are made of cholesterol and the olive oil in the cleanse will soften them and grease their passage, but the other 10% are calcium and olive oil has no effect.

Since I am chicken to try any more cleanses, I just stick with the cleansing power of silymarin aka milk thistle. The only caveat with milk thistle is that it can lower the effectiveness of benzodiazepiene drugs, and I take one. But, I have not noticed any real change. You can also try a drink made from cider vinegar, unsweetened cranberry juice, water and lemon juice. Yes, it tastes as awful as it sounds, so I added a little bit of stevia. In addition, beets are very good for your liver.

klutzo

Curcumin and German Shepards!
Hi Islandfinn,
I also take curcumin, mostly for it's anti-Alzheimer's properties. Lyme has done a major number on my memory.

Exocrine Pancreatic insufficiency is very rare in humans and is usually caused by alcoholism. Since I am a lifelong teetotaler, that cannot be the cause in my case. It is a very common problem in German Shepards, however! As far as I know, there are no German Shepards in my family tree, lol.

You can also have Endocrine Pancreatic insufficiency, which is different, and will cause diabetes, and I am now at higher risk for that, as well as pancreatic cancer. I find your story of that woman's recovery inspiring and it certainly gives one hope.

I am sorry for getting Fred's B12 thread off track. If others are interested, we can start a thread on the gallbladder and pancreas elsewhere....not sure which would be the most appropriate place.

Freddd

Quote:
Originally Posted by islandfinn
Originally Posted by klutzo

hi klutzo
so sorry to hear your news. Hope the immunity boosting etc will re-stabilize you. I saw an amazing documentary once on the body's ability to reprogram itself. A woman whose spine had been severed had lost all feeling and movement from mid-waist down. 7 years later she regained the ability to feel sexual pleasure - her body had developed new pathways to her brain. I hope your pancreas and body can quickly figure out some similar type of rewiring!

I had never heard this before. Thank you for continuing to share your information.

add my request to this. I too get gall bladder symptoms at times - twice to the ER. Still haven't had it out as it mostly doesn't bother me + have concerns about surgery - general anaesthetic contributed to the first major, long lasting crash and can't handle it well, would like to keep an organ if it still works, numerous friends have had it out only to have the pain continue......

I use turmeric every day for the curcumin's anti-inflammatory properties among other reasons. However, have gotten a few gb twinges since starting it. Found a study (can't find it now), Japanese I think, that said that curcumin causes gall bladder twinges.

Hi Islandfinn,

A woman whose spine had been severed had lost all feeling and movement from mid-waist down. 7 years later she regained the ability to feel sexual pleasure - her body had developed new pathways to her brain. I hope your pancreas and body can quickly figure out some similar type of rewiring!

Actually this is not as unusual as it may sound. The vegus nerve which is non spinal can carry such signals and allow the experience of orgasms even with a severed spinal cord. It goes directly to the brain stem. The SLIGHTEST TOUCH orgasm stimulator may take advantage of that.

http://biologyofkundalini.com/articl...ry=VivalaVagus
Scientists are investigating the existence of non-genital orgasms suggesting a more pervasive orgasmic process and its role in neuroendocrine and psychological health. There are vaginocervical sensory pathways to the brain that can produce the absence of pain without loss of consciousness (analgesia), release oxytocin, and bypass the spinal cord via the vagus nerve. That is a paraplegic woman can still have cervical and G spot orgasms because the vagina is fed by the vagus nerve while the clitoris by nerves that come out of the spine. This gives weight to the necessity of sexual intercourse for maintaining healthy balance of the nervous system. Also there might be something to the validity of having sex during an awakening to help the parasympathetic nervous system to maintain its own. Orgasm has been described as a mini-seizure of the limbic system and tends to release or lessen deep limbic activity. Dr Amen noticed that depression, sadness, feelings of hopelessness, and automatic negative thoughts correlate with a hyperactive limbic area. The supplements that seem to help limbic hyperactivity best are DL-phenylalanine (DLPA), L-tyrosine, and S-Adenosyl-Methionine (SAMe).

jenbooks

Klutzo Liver gallbladder thread
Yes--would you start one and perhaps PM Cort to kindly move our gallbladder posts to this thread? That would be great. Liver and gb are surely issues for MANY cfids and lymies.

Come to think of it I should start my cleansing green juices again. I haven't in months. Ever since I started eating fresh red sour currants for my bladder, I didn't have the same cravings but lately I have wanted one and just been a bit lazy. I always put a lemon in there and I think my liver and gb really like the cleansing chlorophyll of fresh greens, and lemon.

So thanks for inspiring me.

klutzo

Dlpa
Fred,
I have seen DLPA work absolute miracles with depression and sometimes with pain in Fibromyalgia patients when I had my support group going, completely changing someone's personality from morose and isolating to an outgoing participant.

It has to be pulsed, 8 weeks on and then 8 weeks off, in order to avoid deficiencies of other amino acids, but the effects hold through the 8 week off period.

I cannot take it, since it is contraindicated for high blood pressure.

klutzo

klutzo

Jenbooks,
When I had more cash, I took a daily powder called Greens First. I really, really liked it's effects and it's taste, and it did not have any plants in it that I was allergic to. Every other green drink powder I looked at had at least one allergen. You can get it online if interested.

What section do you think the GB/liver thread should be in?

Freddd

Originally Posted by klutzo
Hi Islandfinn,
I also take curcumin, mostly for it's anti-Alzheimer's properties. Lyme has done a major number on my memory.

Exocrine Pancreatic insufficiency is very rare in humans and is usually caused by alcoholism. Since I am a lifelong teetotaler, that cannot be the cause in my case. It is a very common problem in German Shepards, however! As far as I know, there are no German Shepards in my family tree, lol.

You can also have Endocrine Pancreatic insufficiency, which is different, and will cause diabetes, and I am now at higher risk for that, as well as pancreatic cancer. I find your story of that woman's recovery inspiring and it certainly gives one hope.

I am sorry for getting Fred's B12 thread off track. If others are interested, we can start a thread on the gallbladder and pancreas elsewhere....not sure which would be the most appropriate place.
klutzo

Hi Klutzo,

Gall bladder stuff comes up so often connected with b12 deficiency it's beginning to look like one of the usual items.
http://forums.wrongdiagnosis.com/sho...=9948&page=263

This is a b12 deficiency thread and gall baldder issues have come up often enough and people asking questions that I think it would help if you posted there too and tell your story. Once a person gets an IAIYH diagnosis, the doctor becomes useless for actually finding medical problems.


Freddd


Quote:
Originally Posted by klutzo
Hi Fred,
Since your GB ended up being like a big scar, I would bet that car accident injured it a lot.

I would LOVE to hear about your NDEs. Anything metaphysical is right up my alley. I will PM you on that since it has nothing to do with this thread.

I will post the info on another forum if you give me the URL, etc.

I will PM you the symptoms of pancreatic insufficiency. Do not read them while you are eating!

A very good web site for the truth about gallbladders and how they are not really an unnecesary organ is www.gallbladderattack.com.

40% of people continue to have problems after surgery, esp. middle-aged females, and as my acupuncturist said, a gallbladder problem is really a liver problem. If you have an imbalance between bile and cholesterol, your liver can still produce stones, which can come down and get stuck in ducts, requiring surgery and causing symptoms. I take silymarin in my multivitamin daily now to help my liver. I am hoping the TMG will help it also, since it is used in naturopathy to treat fatty liver.
klutzo

Hi Klutzo,

I guess I was lucky afterwards. I did slowly heal. The IBS healed with the b12. Eating meat, even a little restored normal digestion. I haven't had any further problems since then. The one very bad episode of something when I had the half a dozen NDEs in one night was the only time I had black stool. I was unable to eat for about a week. That was about a year before I had my gall bladder out after a classic attack and ER trip.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Vancerd Post RE: Liver Cleanse

Here's a post by a person who felt he had CFS for 8 years and posted a very interesting testimonial on another forum. Thought I'd to re-post it here on this thread. -- Thanks to Vancerd if he sees this. :)

Regards, Wayne
..............................................

by Vancerd on October 21, 2009

I still can't believe something as simple as a liver cleanse has pretty much totally cured me.

Here's the conclusion of my own "sicko story", the short version.

About 8 years ago, after about a year of medical run around, they decided to take my gall bladder. After that I started having pain and fatigue problems. Intermittent pain in my right side and unrelenting fatigue. Went to my family doc, at least 4 GI docs. Finally convinced them to send me to the Mayo Clinic. The Mayo Clinic didn't provide a diagnosis or treatment. They just said "we don't know, maybe it's a mechanical thing". Several more years and several more doctors and I finally decided to give Holtorf a try. I've told you that story. Went to Holtorf Clinic in Jan, been talking with them every other month since then and spending about $500/month on supplements and bio-identical hormones.

Here is the "rest of the story".

About a week ago I got very sick at work. Lots of pain in my right side, and intense pain in my right shoulder.... like a dagger. I had a big project review so I toughed it out for the day on Thursday. Friday was a scheduled vacation day, but I was miserable all day. Finally in the afternoon, when my wife got home, I said "take me to the E.R.".

At the E.R. they did EKG, chest x-rays, etc. Their diagnosis was gastritis. Sent me home with a prescription for Prevacid.

Miserable Saturday and Sunday. Decided I needed a better answer and I started wondering if the shoulder and the abdominal pain were connected. Long story short... I found a "liver flush" on the web. (www.sensiblehealth.com) I'm sure you're very familiar with those kinds of things... the ones that promise to cure everything from headaches to MS overnight... whatever, I was ready to try anything. I told my wife (a nursing student) , don't laugh at me, but I'm going to give this a shot.

The ingredients were epsom salt, olive oil, and grapefruit juice. The ingredients for this magic cocktail cost me $6 at the local supermarket. I drank the stuff and went to bed. When I woke up the pain was 90% gone. And then IT started... I started passing some bizarre looking things. Major gallstones some the size of a walnut (and I have no gallbladder). That was a week ago now and the pain is still 90+% gone (I think I'll repeat again this weekend) and my energy level has been THROUGH THE ROOF!. I'm pretty sure I am completely cured!

8 years of pain and fatigue
8 doctors, Mayo Clinic, Holtorf Clinic
4 sonograms, 3 CT scans, 2 MRI's
approx $35k - $50k paid by my insurance
approx $5 - $8k out of my own pocket
$6 for the cure.

Maybe instead of health care reform, we need some medical training that's centered around healing patients instead of maximizing profits.
 
Messages
24
Hey Klutzo, and Fredd, and others

Freddd said he had a pain under left shoulder blade that he thought was gallbladder. I have one that comes there as the day goes on, always thought it was just back pain, maybe it is organ related (gallbladder, liver). How to Know??? Its kind of like a major (i mean MAJOR) muscle spasm, nothing helps (no muscle relaxers, etc, nothing), so maybe it has been related to something else all along . . . only thing that helps is LYING down. THOUGHTS? ???


Also, one time i tried ( long time ago like many other things) that liver or gall bladder flulsh, i did get some little green things out, didnt examine closely (later someone told me it is just the olive oil congealed, the whole thing sort of fraudulant), i did feel better for maybe 60 seconds or 120 seconds but then it went away (had chronic pain at the time) . . . so maybe have something in there that needs to be cleared away????? THOUGHTS????
Klutzo said the microbes use the cholesterol, at one point my level was 10, yes ten can you believe it . . . beckster (also what does Myhill say to do for pancreas--i know you can do it, klutzo but perhaps i can or others can)
 

klutzo

Senior Member
Messages
564
Location
Florida
Pain in shoulder, pancreas problems

Hi Becky,
Pain in the shoulder caused by gallbladder or pancreas is almost always in the right shoulder, not the left. You might want to get an xray of that and see what it might be.

I found out my left shoulder pain, which also was much worse lying down, was due to my supraspinatus muscle being torn in half! I could not lay on it at all. I had to have an MRI to find that, but then I had a month of P. T. and continue to do some P. T. exercises daily with a theraband at home, so I've been able to avoid surgery. They tore the shoulder muscle in my GB surgery. If you have FMS, it is vital to make sure they put your arms down at your sides during surgery, not out at a 90 degree angle to your body like they normally do. That is too much stretch for shortened fibro muscles.

Dr. Myhill says low enzyme levels can be caused by a combo of virus, bacteria, and parasite overgrowth in the small intestine. This is called SIBO and is treated with ABX for two weeks, anti-virals for two weeks, and artemesinin for two weeks. IMO, the best test for this is the CDSA which requires that you find a doctor willing to accept the results from the lab, usually an alt. practitioner. You can get the kit online to do the test and mail it in. When I last did it in 2003, it cost $175. It will also evaluate your pancreas and your yeast status as well.

klutzo
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Gall Bladder

Gall bladder problems are extremely common in people (CFS or not) who suffer from mold illness.

My wholly unsubstantiated hypothesis is that the body may use it as a "holding tank" for the mold toxins rather than letting them go through the intestines where (at least according to Ritchie Shoemaker's speculation) they will be reabsorbed into the body by the 24% of the population who have mold-susceptible or multisusceptible genes.

I didn't have any success with gall bladder treatments until I really got away from the mold. Then it started releasing all kinds of black mucus (which often came out in diarrhea) like crazy.

This is consistent with my general belief that the body does not like to let go of any toxins unless it is away from external toxins (due to wanting to avoid a "double whammy").

I tend to think it's not necessarily a bad thing to have the gall bladder serving as a holding tank, if it's a choice between that and having them stored in some other part of the body where they would cause more damage.

I think it's reasonable that Lyme also could cause gall bladder problems.

Though I think it's more likely that Lyme and mold together are what really does it. It's my increasing belief (supported by at least some research studies) that Lyme exacerbates the effects of the mold in a variety of respects.

Or it could be that mold is exacerbating the effects of the Lyme, if folks prefer to look at it that way.
 

klutzo

Senior Member
Messages
564
Location
Florida
Vancerd's Story

Hi Cort,
Unfortunately, I think the reason why the medical profession doesn't "get" stuff like what cured Vancerd is fairly simple. MONEY.

Who pays to build medical school buildings? Who pays for the lab equipment? Why pays for the textbooks and therefore controls to a great extent what is in them? Who gives out many of the medical school scholarships? The answer to all of these is the same. BIG PHARMA.

IMO, add to that the arrogrance of thinking that because your IQ is in the top ten percent, and you have "doctor" in front of your name, you're way too smart to be brainwashed, which causes you to let your guard down to the overwhelmingly one-sided education you receive, and you have a recipe for disaster.

Only recently have some medical schools begun to offer elective courses in nutrition. Most docs get zero training in anything other than expensive slash and burn treatments. Hippocrates said, and I am paraphrasing here because I can't remember the exact order of the quote: "Let your food be your medicine and your medicine be your food". Western medicine was supposed to have been founded on his teachings, but I heard recently that as of a few years ago, graduating docs no longer have to take the Hippocratic Oath of "First, do no harm". I hope that what I heard is not true, but would not be surprised if it was true.

My personal opinion is that having the profit motive invoved in medical care is immoral at it's basis. Until it is removed, we patients have no chance. We are regarded by most docs as nothing but profit-making units, just like rows of wide screen TVs sitting on the store shelves. I have had to do dangerous tests involving a lot of radiation to keep docs happy and protect them from potential law suits, just so I can get the drugs I need to live. As some of you may know, I refused to do just such a test over again for the 7th time recently, and was fired by my PCP because of it.

klutzo

P.S. What happened to Vancerd is exactly what my TCM doc warned me about. She told me that gallbladder problems are really liver problems and that I could still form stones in the liver after GB removal, so I would have to follow a VERY low fat diet for the rest of my life.
My GI doctor said I could eat a 60 gram fat diet, which is not that hard to stick to, since normal people eat 100 grams. I learned early on that I could not tolerate more than 35 grams, and had to start making double meals, one for my husband who is very thin and needs a lot of fat, and boring low fat ones for me. Often, he eats take-out, since I am too ill. Going out to eat is impossible.

I am finding out how right my TCM doc was, and that even 35 grams is too much for me. I woke up Saturday morning with the worst pancreatitis attack ever, and am only now starting to eat small amts. of solid food. My sin? I ate an extra lean 10 grams of fat hamburger because my husband wanted to go out so badly. I took off the bun, I had them bring me salad with no dressing in place of french fries. I still got very sick.

A 20 gram fat diet is the maximum that most people on the chronic pancreatitis forum say they can handle, and that is not nearly enough fat to be healthy. Your hormones, brain and skin will suffer. My skin already looks fifteen years older since this probem started two years ago. Also, they say all animal flesh, nuts, fried foods and spicey foods are out, period. I now exist on undressed salads, chopped fresh fruits, and plain, non-fat yogurt.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Those fats and health...

Hi, Klutzo; I want to question your statement that one needs more than 20 gr fat per day for health; Dean Ornish suggests 15 or less, and kept a fair number of seriously ill patients with heart disease improving and healthy for many years (see Dr. Dean Ornish's Program for Reversing Heart Disease, p/b ed. p.345 and elsewhere).

Colin Campbell's The China Study gives similar figures for some of the world's healthiest populations. I eat that way myself, and though I have CFS, I am not aware of any problems that can be traced to my low fat consumption--indeed, I was eating more fat than that when all this stuff began 3 years ago. Best, Chris
 

klutzo

Senior Member
Messages
564
Location
Florida
fat grams

Hi Chris,
Your experience is very encouraging. I am aware of Dr. Ornish's program. I was going by the standard daily calories in relation to fat percentage charts that dieticians use, and by my own experience with what it's done to my skin so far. I am supposed to be taking 3 krill oil and 6 vitamin D sofgels daily and am afraid to, since they are all fat. I need the vit. D esp. since I can't get outdoors. I am glad you are doing so well.

Do you have any ideas on how to eat hot meals with beef, fish, etc. and stay under 20 grams? Now, I have to take my formerly good homemade beef stew, and cook the meat in a separate pot. I eat vegetable stew, very bland because spices are also irritating, and my husband adds the meat to his. What ued to be delicious tastes pretty blah. I used to boil my "stir frys" in a little water with Terriyaki sauce instead of frying, but now I can't even have the spices or the meat in them. Fish of any kind is pretty much out. The walnuts I used to add to salads so I could absorb the nutrients from the greens are out....I was taught you cannot absorb them without a little fat. That leaves only non fat dairy for protein. What do YOU do for protein?

I'm not sure any of this will matter if things don't improve. I had horrible pain just from eating 5 soda crackers with only 1.5 grams of fat, plus one slice of cantaloupe. That was my entire dinner. I ate it at 5:30 pm and I still hurt now at 2 am. I've not had a real meal since last Friday night.

klutzo
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
those Proteins...

Hi, Klutzo--sorry I am a bit late getting back to you on this. I think that if you regard beef and fish as necessary, you are in trouble. Do read Colin Campbell' "The China Study"--a deeply researched book by a central figure--Prof. Emeritus of Nutritional Biochemistry at Cornell U.--not some kook riding the latest dietary fad. He traces how the western myth of the need for large quantities of animal protein came into being, and how the myths are kept up by--guess what--the influence of the pig, beef, dairy, pork, chicken... industries.

We really don't need that much protein! It just makes life harder for our kidneys and other organs. So where do I find my proteins? Breakfast is mostly coarse oatmeal--has a surprising amount of protein. Lunch may be peasoup, or something like that--legumes have plenty of protein. Supper? Maybe some quinoa or millet--both quite high in protein. Just very occasionally the white of an egg, or a small piece of wild salmon (one of the advantages of living in BC!) And of course lots of vegetables.

I reported feeling pretty good a while back---this last week has not been so good, but I am sure it is not due to a lack of protein!

Anyway, if you are thinking seriously about diet generally, do look at Campbell's book--it is a major statement, though of course not the final one--that there will never be! It does not however address CFS specifically, though I note that Cheney recommends in several spots a low fat diet--see "The Heart of the Matter" and other statements.

Good luck, and best wishes, Chris
 

klutzo

Senior Member
Messages
564
Location
Florida
China Study and MRI results

Hi Chris,
Yes, I am aware of the China study, and it's a good thing, since I am now back up to an adequate solid food intake at 1,500 calories, but having to stay at 10 grams of fat daily.

Luckily for me, I was a low fat lacto-vegetarian all my life until doctors kept telling me I had to eat flesh to get enough protein to prevent worsening metabolic syndrome and eat fats to slow absorption of sugars. I wish I'd never listened to them....my body knew what it needed and could tolerate and that is why I ate the way I did.

However, watching how sick vegetarian eating made my spouse has convinced me that we all have differing needs. My cooking of meats and fish is for him. He really does need them. He tried hard for months to be a vegetarian for me, but he got so ill from it that it could not be ignored.

I do not have celiac disease (3 neg. tests and neg. elimination diet). I do have lactose intolerance but take loads of lactaid to counteract it and have had none of the symptoms for a couple of decades. I can't just eat beans and nuts for protein. In fact, I can't eat nuts at all any longer...too much fat, plus they have anti-enzymatic properties. Tofu is out due to my being hypothryoid, part of which I blame on my previous daily consumption of tofu and soy milk. I hate tempeh, and miso makes me violently ill. So, I don't see how I can do without non-fat dairy and yogurt is supposed to be esp. good for the pancreas.

My MRCP (MRI of the pancreas) results are back and this now joins two previous CTs with contrast in showing ZERO wrong with my pancreas to explain why I have such severe malabsorption. Small bowel observation with a scope and a biopsy showed no problems there.

I think I know why...sympathetic overflow. When the parasympathetic is all but shut off, digestion and absorption suffer tremendously. I have an article on this ready for my GI doc, but don't want to push my luck by bringing this up as if I know something he doesn't, having just been fired by my PCP for knowing too much.

Meanwhile, my present difficulty appears to be yet another recurrence of bile reflux gastritis and I am treating it accordingly. Thank God for the pink stuff.

klutzo
 

willow

Senior Member
Messages
240
Location
East Midlands
Interesting.....

Most most of my adult life I'd been vegetarian (tho not vegan).

Living in southern Spain for a while I ate fish now and again, but otherwise no.

Then gradually more non-flesh sources of food became intolerable, first all dairy except hard ewe or goat cheese, then that. Then beans, nuts and seeds, even when sprouted and soaked and strained and washed and de-skinned etc... most cereals.

1-2 sometimes 3 eggs a week was ok.

But I needed more protein, so somewhere earlier on added in fish, tho I was wary because of the metals, but tried to vary, avoided large, oily predetors.

Just over 2 years ago got the feeling my body needed meat. Tried a little now and again. Beef was all that seemed to hit the mark, problems with everything else.

Just recently I've gone through a phase where my body is very, very beef hungry. I'd been treating with some success, in 5 months regained my function of 3-4 yrs ago, and I think my body is asking to be repaired and needs beef for that. Occasionally pork is ok, lamb just isn't. My response to chicken is improved, but unsure if it's beneficial... have a mixed response.

My meat is organic from a farm 4 miles away. Most of the beef, pork and lamb is their own, the chicken from a neighbouring farm. Even though I can't get there alone, I know I'm extremely lucky to have this so close. I eat lots of organic fruit and veggies. At heart I'm a veg monster.

At the moment my system also seems to be asking for more fats. I'm always conscious to use a wide variety of healthy ones, and previously cautious on quantities to avoid lipid peroxidization. But just now more is helpful.

My digestion is behaving well, better than before meat. Though it was never problematic I sense my absorption is better. Awful health had kept me hidden away from most people for 3 years, but the people I've seen recently tell me unprompted that I'm looking good, better than when last seen 3-4 years ago. One even said radiant.

So I think not only are individual's food needs different but our own food needs can change.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Proteins and fats...

Hi, Klutzo; well, sounds as if you may be finally off the hook for pancreatic trouble? Hope so... I know that legumes can be a problem--most have lectins that can cause difficulties--I don't eat too much of them, and like you distrust soy, though I used to like tofu and probably ate too much of it.

There are other veg sources of protein, like hemp, though that contains some fats (mainly omega -3), and rice protein, which is pretty good, and also pretty tasteless. I admit to occasionally looking with some longing at locally obtainable bison meat (if I find bison heart, will probably fall for it and pretend it is Cheney's cell signalling factor), and wild salmon always looks good to me, and as I admitted I occasionally fall for it--and hope Ornish and my arteries forgive me.

I readily agree different strokes for different folks--and often wish I felt free to eat some of the great cheeses and fish that pass before my eyes... but one heart surgery is enough for me! And since there was heart disease on my mother's side, I accept those genes as putting limits--if I play along, they will not express themselves (or so I hope) and things can continue.

It sounds as if you are getting a handle on your situation too--I hope so. But life should not be so difficult! Best wishes, Chris
 
Messages
4
The Compilation Continues:

jenbooks
Senior Member

Gallbladder NDEs etc
Actually if Freddd didn't mean he almost died but meant he had classic NDE's can he please start a thread about that (separate) as I'm very interested, too.

Well I don't have symptoms like that and eat 3 eggs for breakfast every morning but I still feel lyme & co has done a # on my gallbladder & liver. Sometimes I get headaches with a feeling of congestion there. I feel my hbot chamber has helped the issue. I have considered liver flushes and cleanses but never did one. Often drinking hot water with lemon helps.

So, Often drinking hot water with lemon helps. I heard that too... Also I heard that it is called "the Master Cleanse" and you just drink a lemon drink all day for 10 days to "detox" and cleanse out your system. Then there's "liver flushes" to cleanse your gallbladder and flush out stones, and gall bladder symptoms disappear.

 

jepps

Senior Member
Messages
519
Location
Austria
I didn't have any success with gall bladder treatments until I really got away from the mold. Then it started releasing all kinds of black mucus (which often came out in diarrhea) like crazy..

slayadragon, this is a very interesting point. Which kind of treatment did you help with gallbladder problems after treating mold?
 
Messages
47
This is an old post but can someone clarify if taking enzymes is a good idea or a bad idea with pancreatic issues? I've been diagnosed with pancreatitis and was under the impression enzymes were integral in order to help take the load off.

Btw, i'm finding castor oil packs helpful in reducing the shooting pains I've been getting on my left side. Also, gallbladder flushes help. Going to restart that again. Also, a mold victim. Surely did the damage. I don't drink. Also newly diagnosed with Lyme, actually saw the spirochetes in my blood this time. They were dormant cysts for a few years. The broke open last month. I've got a nice fight on my hands.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@matters
Hiya matters. It might be helpful to use @slayadragon which will sent her an alert to your post. Especially, as you pointed out, it goes back a ways. Sorry to hear that you have pancreatitis. Hope you find some answers.
 
Messages
47
Thanks @Snowdrop, I think I want @klutzo too. Since he was the one commenting on the enzyme issues.

hopefully I just did it properly and will he get sent an alert.

Yea I thought i had something going on with gallbladder, burping alot after meals. The pancreas caught me off guard.

Thanks for you concern.

Matt
 

klutzo

Senior Member
Messages
564
Location
Florida
I have been too sick to come here anymore for years now and got sent something else and saw this. I cannot eat without enzymes, so it is not a choice for me. I make zero lipase. I have never had pancreatitis. I lost my pancreatic function due to Lyme and bile reflux, which started after the GB was removed. I think everyone over 50 should take digestive enzymes. Thanks to bile reflux, which is almost impossible to treat, my entire stomach and esophagus are covered in precancerous cells now. I did not get an alert of your question, very sorry. I am also female, not male. I hope you feel better by now. If you can eat as low fat as possible and with no alcohol, you may be able to save the GB. Forty percent of those who have it taken out develop complications like I did.
klutzo