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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Genius Wanted ~ Anyone have a big picture theory?

Messages
60
I'm so glad I spared you the agony. :rolleyes:



My gut seems to be happier these days due to regular Betaine HCL (3 caps is my optimal amount, with each meal), to help me digest the animal-source proteins--which are "the building blocks" for not only immune cells, but also the neurotransmitters. AND fairly high doses of probiotics.


I haven't had a chance to read the gut discussion yet, but what I've noticed with my son is that taking probiotics twice/day has helped tremendously with his GI symptoms. I have also noticed that not all brands work. He does well with Natren Healthy Trinity (very expensive, IMHO, but worth every penny) which unfortunately needs to be refridgerated. There have been 3 times where we ran out & wasn't able to get more for 2-3 days. . .but if he's off of it for 24 hrs, his GI symptoms return in full force. I am not familiar with Betaine, but will now try to learn more.
 

Catseye

Senior Member
Messages
109
Location
SW Florida
Hi Kurt

I've tried some chelation already myself, some stuff from Biotics Research (looked like chlorella but was something else, called Porphyrazyme) and later on, humic acid. The first round from Biotics Research took a couple of weeks for the side effects to become unbearable. And just recenlty, the humic acid/chlorella attempt gave bad effects the first night so I quit. The first attempt with Porphyrazyme was my doc's idea, the second one with the humic acid was mine.

For our next try, my doc wants to use DMSA. I've been reading tons about it. I saw the backfire website about DMSP and it looks like the people who got devastating results were doing stuff like starting the IVs while they still had amalgams and nobody said anything about supporting the liver, kidneys and minerals. So adequate preparation is a big deal that I'm making sure I'm getting right. I'll still start at a very low dose of DMSA. I've been reading Andy Cutler's recommendations.

What did you try? I'm glad you reminded me about the BBB, I hadn't thought much about it but I did test positive for lyme and there's something I need to reread about ammonia in the brain.

Know what, my kitty was getting sicker and sicker last year, losing weight, etc until it got to the point where she couldn't even eat her food. She would freak out eating, like she had a sore in her mouth. The vet could find nothing but he eventually tested her for FLV and she tested positive. We did a mouth culture and she had some nasty bacteria in high levels. She also had swollen glands in her neck. Instead of panicking, I decided to treat her guts since FLV was an immune system disorder. What to feed her became obvious one night when I was eating some filet mignon and she came over and wanted some. Of course, I gave it to her since she was so sick and wouldn't hardly eat. She ate my whole big piece! So that's when I luckily found a food I could mix her supplements with and she would eat it.

So she got red meat (not filet mignon every time, even though it's cheap here, like $6 per pound), cooked rare, with some kitty vitamins and minerals, some transfer factor canine formula with colostrum, and some special cat food. I eventually came across some kitty probiotics and added that to her food. It took almost a year, but now she's not whining anymore, is acting like the other cats, has put on a normal weight and the glands aren't swollen anymore. She seems fine now but I'm reluctant to give her any regular, cheap commercial cat food ever again. I know all those pet foods are awful.

Well, I have to go to bed, have a CDSA and ASI to do in the morning to see if the liver, guts and adrenals are up to snuff so I can tolerate the DMSA. I hope they're okay, I'm anxious to get started. :rolleyes:
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Question for Kurt

Kurt, My sons doctor feels that phenals and artificial flavors and colors may be an issue for my son. We have noticed some extreme behavior when he eats some foods, especially candy. I would like to try the Feingold diet but am having trouble finding info on it. The Feingold website charges for information on the diet and I would like to keep that money in my pocket.

The GFCF diet has tons of information about hidden sources of gluten and casein and what to stay away from on lists of ingredients. I do not want a cookbook but just general info on key ingredients to stay away from and a list of foods that contain phenals and salicylates. Any help would be appreciated.

Thanks,
 

kurt

Senior Member
Messages
1,186
Location
USA
I've tried some chelation already myself, some stuff from Biotics Research (looked like chlorella but was something else, called Porphyrazyme) and later on, humic acid. The first round from Biotics Research took a couple of weeks for the side effects to become unbearable. And just recenlty, the humic acid/chlorella attempt gave bad effects the first night so I quit. The first attempt with Porphyrazyme was my doc's idea, the second one with the humic acid was mine.

For our next try, my doc wants to use DMSA. I've been reading tons about it. I saw the backfire website about DMSP and it looks like the people who got devastating results were doing stuff like starting the IVs while they still had amalgams and nobody said anything about supporting the liver, kidneys and minerals. So adequate preparation is a big deal that I'm making sure I'm getting right. I'll still start at a very low dose of DMSA. I've been reading Andy Cutler's recommendations.

What did you try? I'm glad you reminded me about the BBB, I hadn't thought much about it but I did test positive for lyme and there's something I need to reread about ammonia in the brain.

Catseye,
I started with Cutler's book, tried some of those ideas, eventually settled on a more natural approach though. The only drug chelator I used was DMPS, and did not want to continue that. My Dr. also wanted me to use DMSA but I decided to try natural chelation first. So I used Chlorella, bentonite clay, klamath blue green algae, Modifilin, at one point even charcoal. And of course lots of natural selenium. And ALA, that was pretty dangerous though, seems to mobilize mercury and if you miss a dose you get zapped. Anyway I had all the symptoms Cutler talks about with the natural stuff, I think it was pretty much doing what the DMSA would do. And it was all too much.

Then I met people who had amalgams still and had recovered. But also some who improved when they went through amalgam removal DMPS. And MANY who had been harmed by attempts at mercury removal. In the end I decided to find other ways to heal with the idea the when I am well enough my body will gradually remove the metals itself (glutathione does that). The only supplement from those days that I found perfectly safe and still use is the Klamath blue-green algae, that actually helps me sleep at night. Some people say it helps the neurochemistry, as well as absorb toxins, hard to say but I never had any negative effects from that one, just positive.

Kurt, My sons doctor feels that phenals and artificial flavors and colors may be an issue for my son. We have noticed some extreme behavior when he eats some foods, especially candy. I would like to try the Feingold diet but am having trouble finding info on it. The Feingold website charges for information on the diet and I would like to keep that money in my pocket.

The GFCF diet has tons of information about hidden sources of gluten and casein and what to stay away from on lists of ingredients. I do not want a cookbook but just general info on key ingredients to stay away from and a list of foods that contain phenals and salicylates. Any help would be appreciated.

Thanks,

Frickly,
The money you spend to join Feingold is worthwhile, many times over. That diet is just way too complex to follow without the regional listings of brands in your areas that are known to be safe. And you only get that with membership, sorry. I would say that is probably the most value for my money I have ever received for ANY treatment or diet I have EVER tried. It changed the life of many people in my family. And you need to be on their forums and boards for a year or two when you work through that.

Or alternatively, you could just make everything from scratch, we actually do that as much as possible, but even with that we need Feingold listings to know which cooking oils are safe for our children. As you point out, there are many hidden ingredients, if people only knew that they were eating petroleum in many foods... And we also learned that my wife is sensitive to one preservative, avoiding that really helps her. Ironically I am the least helped by Feingold, does not do much for CFS, but it changed the life of my daughter with Tourette's syndrome, no more tics. And one son went from being unable to mentally cope and focus in middle school before Feingold, to now being an honors student in a very demanding University Engineering program. If your family is sensitive to artificials, Feingold is the ONLY way out that I know of. Everyone should be on this diet, let all the poisonous food companies go bankrupt.

CFGF did not work as well for us, only one child has been dramatically helped, although it did help to take him off cow's milk, no more opium-type response to Casein. So he uses goat's milk and cheeses only. We did switch to naturally-raised raw Cow's milk for the other children and that seems to cause no problems at all, maybe even helps.

One last comment, a very important part of Feingold is learning the few candies that are safe for the children. When they receive candy at school for example, we let them exchange that at home for artificial-free candy. That works very well and keeps them on Feingold. In the summer sometimes we let them lapse a little, but definitely during the school year they have to stay off artificials.

If you really have no money, one alternative would be to find someone who is willing to give you their old Feingold book, they do send out updates every year. Last year's book might have enough for you although there are some changes every year.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thanks Kurt

It makes me feel better to hear that it is worth the money. With Christmas coming up it is somewhat of a hardship. I might have to wait a few weeks but think I will order the Feingold material. Until then I will try to make foods from scratch and do my best at looking at labels. I already make many foods from scratch because of the GFCF diet he is on although we have added casein back to his diet to see how he does.

My son is starting a new private school next week for gifted children. They do have kids with issues like my son and they are fully aware of his diagnosis. However, I am beyond stressed about the whole thing. I think this school is the closest he will get to fitting in and could make the difference between failing school or going on to college and finding success. Currently, he reads a 300 page novel per day and that is on a school day. Unfortunatley he is simultaneously failing reading in school. sigh........
 

kurt

Senior Member
Messages
1,186
Location
USA
Study showing clinical improvement from leaky gut treatments

Here is an interesting study, this shows that treatment for leaky gut can help CFS. The treatment looks pretty simple, a diet plus a handful of supplements. Maybe the article has more details.
--Kurt


Neuro Endocrinol Lett. 2008 Dec;29(6):902-10.

Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement: effects of age, duration of illness and the translocation of LPS from gram-negative bacteria.

Maes M, Leunis JC.

MCare4U Outpatient Clinics, Belgium.

BACKGROUND: There is now evidence that an increased translocation of LPS from gram negative bacteria with subsequent gut-derived inflammation, i.e. induction of systemic inflammation and oxidative & nitrosative stress (IO&NS), is a new pathway in chronic fatigue syndrome (CFS). METHODS: The present study examines the serum concentrations of IgA and IgM to LPS of gram-negative enterobacteria, i.e. Hafnia Alvei; Pseudomonas Aeruginosa, Morganella Morganii, Pseudomonas Putida, Citrobacter Koseri, and Klebsielle Pneumoniae in CFS patients both before and after intake of natural anti-inflammatory and anti-oxidative substances (NAIOSs), such as glutamine, N-acetyl cysteine and zinc, in conjunction with a leaky gut diet during 10-14 months. We measured the above immune variables as well as the Fibromyalgia and Chronic Fatigue Syndrome Rating Scale in 41 patients with CFS before and 10-14 months after intake of NAIOSs. RESULTS: Subchronic intake of those NAIOSs significantly attenuates the initially increased IgA and IgM responses to LPS of gram negative bacteria. Up to 24 patients showed a significant clinical improvement or remission 10-14 months after intake of NAIOSs. A good clinical response is significantly predicted by attenuated IgA and IgM responses to LPS, the younger age of the patients, and a shorter duration of illness (< 5 years). DISCUSSION: The results show that normalization of the IgA and IgM responses to translocated LPS may predict clinical outcome in CFS. The results support the view that a weakened tight junction barrier with subsequent gut-derived inflammation is a novel pathway in CFS and that it is a new target for drug development in CFS. Meanwhile, CFS patients with leaky gut can be treated with specific NAIOSs and a leaky gut diet.

PMID: 19112401 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/...med_ResultsPanel.Pubmed_RVDocSum&ordinalpos=4
 

Catseye

Senior Member
Messages
109
Location
SW Florida
pubmed study on LG

WOW, Kurt, what a find! Cool!

Now everybody can print this and take it to their idiot regular doctor if he has been a complete moron and has admonished you for faking and/or if he has suggested counseling or psychiatric appointments for your "depression" and "lack of energy". Actually, what's the point, he wouldn't be the person you'd want to do the CDSA, anyway. You need a real CFS/gut expert to do that. It would be a waste of time to show this to most doctors. I can't see them saying "gee, I'm so glad you brought this to my attention, I'm going to completely change the way I've been treating my patients who complain of fatigue and start educating myself on this leaky gut diet and supplements! I feel a CFS epiphany coming on, hallelujah!"

Instead, we should all look at how we can sue them for failing to diagnose intestinal dysbiosis, intestinal hyperpermeability (which pretty much goes with the dysbiosis) and the resulting liver malfunction. Diet is everything. The medical profession knows this and ignores it on purpose. I keep hearing the excuse that "everyone wants a pill, they won't change their diet". Well, maybe that's the majority of partly healthy, lazy America. When you're in suffering agony 24/7, any useful recommendations will gladly be followed.

"Hey doc, you say I have to give up my bacon cheeseburgers, chocolate shakes and twinkies? You betcha! Green juicing? I'll do it! Zucchini with breakfast? No problem! Use stevia instead of sugar? Bring it on!"

I remember when I started to really read food ingredient labels. I picked up a jar of Jif peanut butter (which I realize now is poison) and I saw that it had soy in it, not just the oil. Right then I realized how everything I was eating could be something else besides what I thought I was eating. When did this happen? It was all downhill from there.

I just tried to look up Jif's website to see what's new ingredient-wise and I found myself ROFLMAO! Now there is Omega 3 Jif! Natural Jif! Peanut butter and Honey Jif! Then the page quit and wouldn't reload. Then I found a peanut butter rant page that really had me rolling! Here's a quote from it:

"Jif's got that slogan 'Choosy Mothers Choose Jif.' Only mothers who know nothing about nutrition would be so stupid."

How true, and I was one of those children that grew up on pbj sandwiches. Maybe you guys have seen the Omega 3 Jif but I'm in a place where we don't get many American products. I'm not sure if Jif is here; they won't have all the varieties, though. And who are they kidding? Omega 3 Jif is one of those catch 22 foods, like "good for your heart Crisco shortening" or "liver friendly moonshine".

Just FYI, I hope everyone is aware that peanuts and cashews should never be eaten, for various reasons. Too bad, I really loved cashew butter. And all nuts that one can tolerate should be raw. Roasted nuts have oils that have been altered and they are harder for the liver to deal with. I know almonds are supposed to be high on the list to eat but almond butter is awful, IMO. Much more easy to bear with a big, fat spread of organic honey on top!

Just went back to Jif. The regular doesn't have soy in it anymore, but the reduced fat one does. Look at these ingredients!

PEANUTS, CORN SYRUP SOLIDS, SOY PROTEIN, SUGAR, CONTAINS 2 PERCENT OR LESS OF: SALT, MOLASSES, FULLY HYDROGENATED VEGETABLE OILS (RAPESEED, COTTONSEED AND SOYBEAN), MAGNESIUM OXIDE, FERRIC PHOSPHATE, ZINC OXIDE, NIACINAMIDE, COPPER SULFATE, PYRIDOXINE HYDROCHLORIDE, FOLIC ACID.

If you have CFS and want to really torture yourself, have a big, fat sammich with a hefty load of this stuff! I wouldn't give this to my dog! And have some Smucker's jam with it! Then, when you turn 100, you can get your nice, wrinkly face on the morning news! Are they still doing that? "Look, I'm 100 but I feel like 110!" Or is that the weather channel thing with the temperature? Yes, I can spell sandwich, in case you were wondering.:rolleyes:
 

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
NAC, glutamine etc

Yes, Dr Maes has been on this path for some time now. He ventured down here early this year to catch some sunshine and speak at a conference.

He was also supportive of CoQ10, which some other researchers are not so in favour of. Of course one paper can't represent the totality of his ideas on ME/CFS but it's good to see these important ideas published.

One of the things KDM mentioned to me about glutamine and NAC is that they need to be enteric coated (so they get to the small intestine is my understanding.) He also prefers zinc orotate.

There are many doctors who use a nutritional approach, they aren't all pill pushers with one eye on the clock. I believe in the US and Canada they are called ND's and here they call themselves "Nutritional and Environmental" Docs using both allopathic and nutritional advice and supplements. They're a minority, but they are around...:)

And while we are on the big picture...I have to put in my favourite plug for "fructose malabsorption" which KDM mentioned as being a problem for 46% of ME/CFS patients in one group of his patients (104 of them).

I think this summary makes for very interesting reading...:)

http://www.nutritional-healing.com....ber 2007 talk on CFS by Dr. Kenny De Meirleir
 

Catseye

Senior Member
Messages
109
Location
SW Florida
starches bad! veggies good!

My diet for severe dysbiosis was so restricted, it's easier to tell you what I was allowed to eat than what I wasn't. I could eat beef, chicken, eggs, certain mercury free fish (which hardly exist, it's better to just not eat any), very low starch veggies and raw nuts. Starches like rice, carrots, potatoes were forbidden, as was any high starch veggie. Also legumes were out - no beans. I found out a peanut was a legume, which I didn't know, but there are several reasons not to eat peanuts anyway, that's just FYI. I have basically been eating salads (lettuce only with avocado sometimes), broccoli, zucchini, eggs, chicken, some raw nuts and beef. I was not allowed any condiments or anything with vinegar. Only olive oil and lemon juice if I wanted dressing on my salad. Pork and shellfish were off limits since they are both "dirty" meat and also have other issues. Later, I started salads with tahini passionfruit dressing I make myself.

This was only half of it, the other half were supplements to help support the liver in detoxification, yeast killers, emulsified oil of oregano and all kinds of vitamins, minerals and enzymes, including digestive enzymes and betaine hcl. The yeast killers and oil of oregano were in large doses several times per day and this went on for months. The doc says you have to starve the bad guys out while killing them off at the same time. I asked him why you can't just take a large dose of killing stuff and then a handful of good bacteria and be done with it. And he said the guts are like a hotel that has been taking over by the bad guys. There is a certain limited amount of space available for all bacteria and the bad guys have taken it over. You have to kill them and starve them out at the same time. After a while, you slowly start introducing the good bacteria back again with probiotics. It's a slow, painstaking process and that is the main reason we're all sick: you need an expert and it's still a tough ritual to go through. It's been CDSAs every 4 months or so and then adjustments to supplements as my guts and liver progressed.

If your dietician hasn't seen your CDSA, then she has no idea what you can and can't eat. She can make some general recommendations, but you're way beyond that. She is better off telling you she doesn't know and leaving you to fend for yourself. I would quit all starchy veggies, google for what they are. Quit all pork and fish including shellfish (you don't want any more mercury in your system) and don't eat any carb foods at all - rice or other grains, not even fruit. Your diet will be boring but as you feel better and get to find ways to make these few foods tastier, your body will start to crave these "safe" foods and you will find you don't mind eating the same few things over and over. I have been eating just a handful of stuff for over a year and I still enjoy my meals.

I did try to add in a few other things here lately and I'll know in 2 weeks if it was a mistake or not - some gluten free crackers and hummus, a little bit of rice, some fruit. I have a feeling it was because I seem to be sneezing a lot which is an indication that there are undigested food particles making their way into my bloodstream. If this CDSA shows my gut starting to regress, it means back on the old restricted diet, probably forever. Or at least until I get rid of the mercury and lead. Mercury wreaks havoc on the intestines, too.

The yeast killer I used was Dysbiocide and the oil of oregano was in pill form, called ADP. These are both from Biotics Research supplement company, you can look them up at that same name dot com. The product list shows all products with their ingredients. The Dysbiocide has a bunch of plants in it that I'm not familiar with. But it worked.

Have you been taking any yeast or bacteria killers in great quantities for a long time?

Even the nightshade family of foods should be avoided, which is tomatoes, potatoes, eggplant and bell peppers. It's because of the amount of lectins or glycoproteins found in them. They wreak havoc on digestion, though you wouldn't really know it by eating them. I was eating lots of bell peps and tomatoes until I realized this. Now I eat those very minimally, as ingredients in other recipes. And I'm going to cut them out altogether starting next week. More FYI, tomatoes and bell peppers are actually fruits.

Unfortunately, we can no longer look at food as a luxury, it has now become our body's fuel only, and we just cannot eat foods we can't tolerate. So if you don't have an expert to order and interpret a CDSA, then you stick with the safe foods, like chicken and low starch veggies. But a CDSA is vital to know what's going on.
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
Catseye,
It seems strange how you have been teaching us all this stuff and now I will have to apply it. I just got my tests results back and they are NOT good. The worst he has ever seen and does not know how I am getting around. I am not. It seems that the $1000. has been well spent as now I know what to target.
Neurotransmitters nearly all gone and he said he does not know why my brains are not fried. Massive candida......there goes goodies at Xmas, not that i was eating much sugar anyway and dont eat rice.....just veges and meat. Are seeds Ok? I eat a lot of flax, sunflower and quinoa. Aminos way out wack.......metals not too bad.

See him in 5 days........have trouble taking stuff tho.

I am so sick of it all after 21 yrs of trying this and that.
 

brenda

Senior Member
Messages
2,270
Location
UK
Catseye

Thanks again for all of this valuable information. I have found a lab in Belgium which will do a CDSA without a physician but they advise me to get one to interpret the results. I have no idea who to look for in Germany - should it be a dietition or someone dealing only with gut issues? Sorry if you have already said this - my brain is non functioning this week. I know not to get a conventianal doctor.

I had already decided to give up gluten and dairy after reading a book on Hashis, but now see that it will have to be more extensive - but what the heck - I will anything to heal now.

I will start after Christmas.
 

Catseye

Senior Member
Messages
109
Location
SW Florida
neurotransmitters depend on gut, brenda, susan

You brought up neurotransmitters and so I'd like to make a few points about them.

We all get referred to a psychiatrist at some point, that is if your regular medical tests come up "normal" and the doc can't figure out what is wrong with you. This should be an enormous clue that something is very wrong with the way the medical profession does things. We should all have been doing CDSAs all of our lives and been having them interpreted by qualified people. This would be real "health care", basically preventative maintenance. But doctors don't make money when we're healthy, they make money the sicker we are. Big conflict of interest there.

What gets me about the lack of proper intestinal training is that it can only be on purpose. Too much gets by medical doctors because they ignore the intestines and they are not aware of the wide range of health problems that can originate there. Even seemingly "gut innocent" diseases like arthritis, is caused by inflammation, which is caused by eating something you cannot tolerate and digest properly. There are always exceptions, but I'm speaking in general about everything. Even depression, which causes people to go to the doctor and get on an antidepressant, is mostly intestinal related. Serotonin seems to be the common neurotransmitter that doctors say is out of balance so they prescribe you some SSRIs, selective serotonin reuptake inhibitors, to help increase the amount of serotonin in the brain. But did you know that 90% of the body's serotonin is produced in the guts? Hard to believe, I know . . . here's a big word you don't have to remember:

Main Entry: enterochromaffin
Pronunciation: \ˌent-ə-rō-ˈkrō-mə-fən\
Function: adjective
: of, relating to, or being epithelial cells of the intestinal mucosa that stain especially with chromium salts and usually contain serotonin

a brief quote from this article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774227/?tool=pmcentrez

"The pharmacology of serotonin (5-hydroxytryptamine or 5-HT) in the gut has been the centre of intense interest and research for several decades. Although it is now recognised that 5-HT is contained in intrinsic enteric neurones (where it works as a neurotransmitter), enterochromaffin cells of the mucosa are the main source (more than 90%) of the bodys 5-HT."

and from:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664325/?tool=pmcentrez&report=abstract

"Emerging studies have suggested that pathogenic and non-pathogenic gut bacteria might influence mood-related symptoms and even behavior in animals and humans. In this pilot study, 39 CFS patients were randomized to receive either 24 billion colony forming units of Lactobacillus casei strain Shirota (LcS) or a placebo daily for two months. Patients provided stool samples and completed the Beck Depression and Beck Anxiety Inventories before and after the intervention. We found a significant rise in both Lactobacillus and Bifidobacteria in those taking the LcS, and there was also a significant decrease in anxiety symptoms among those taking the probiotic vs controls (p = 0.01). These results lend further support to the presence of a gut-brain interface, one that may be mediated by microbes that reside or pass through the intestinal tract."


Notice how it said "for several decades" in the first article. It's not even new information! So why aren't doctors interested in why you aren't producing serotonin? They know you need it, that's why they prescribe a SSRI. If 90% of it is made in the intestines, why don't they address this issue? I'll just bet you can do the math all by yourself on this one. But just in case, I'll spell it out yet again. If the doctor treats your gut and fixes it, you don't go back - you are no longer a repeat customer with drugs and drug renewal doctor visits to purchase. Repeat business is the money maker of the corporate world. My dad said when he was young (he's 80 now) he remembers that razors could last 6 months. Now, they're all disposable and last a few days or weeks. There's no incentive not to have repeat business, even if it's your health.

Susan,

how are you eating the flax seeds? And are the sunflower seeds raw and sprouted? That would be the best way to eat nuts or seeds. Since quinoa is a grain, it is feeding the yeast and bad bacteria, I would quit all grains. What were you eating with it? Definitely stay away from Xmas goodies! Are you eating root veggies?

Brenda,

Like they say on beatcfsandfms.org, your life depends on what doctor you choose. They have some tips for choosing one, like what questions to ask them before you even go there. Or you can use the one I use since I know he knows what to do. You can be far away to use Dr. Farr. Unless a dietician went to college to learn about nutrition and supplements as well as how to read, interpret and recommend from a CDSA, they will be useless to you. We are special cases. For one thing, what is normally considered healthy food is not the same for us. Healthy people can eat healthy food but our diets are way too restricted. What's healthy for one of us may be very harmful for another. It depends on what your CDSA says as to what your optimal diet is going to be.

Whoever it is has to be completely sure of how to treat an individual gut of a very sick person, not just recommend the same diet for everyone without looking at the CDSA. They need to know about every enzyme on that test, how they relate to various organs in the body - they can't just focus on the section that shows all yeast and bacteria there. You have to have a plan that is going to kill bacteria while supporting the liver and digestion. It's complicated and experience is a must.

Does anyone at the lab have any ideas? I would ask there if they know of any natural doctors or chiropractors who seem to be familiar with CDSAs.

Did you mean you wanted to wait until after Xmas so you could pig out on Xmas goodies or just that you're going to wait to find a doctor? I hope it's the latter! I haven't had a Xmas goody in years, myself.
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
Catseye,
Thanks for all your help.
What dos CDSA test represent....is it stool, urine. Had my tests thru Metametrix

I had hair test done too and have high levels of arsenic and nickel.

The thing that is so annoying about all this is that I eat NO processed food...just salads, meat and veges, cabbage broccoli, carrot juice, ground flax and sunflower/pumpkin seeds and a few berries.....plus 1 teasp of honey a day. Plus probiotics No good naughty yummy stuff...everything made.

Before my test, I had a massive bladder infection and had to resort to an ant- biotic. Doc said to take probiotics while on them.....then I waited 3 days to do test and now it says I have massive candida. I never had it when I did my test 3 yrs ago so feel sure it is from the anti biotic even tho I took probiotics.

Brenda,
The Doc/naturopath I am seeing only charges $50 an hr and will take Skype calls or phone consultations from anywhere and is British...
 

Catseye

Senior Member
Messages
109
Location
SW Florida
Hi Susan

The CDSA is a Comprehensive Digestive Stool Analysis. We use Genova Diagnostics. Their test shows:

Beneficial SCFAs (short chain fatty acids)
n-butyrate
beta glucoronidase
ph

SCFA distribution:
- acetate %
- propionate %
- n-butyrate %

fecal lactoferrin
color (hehehe)
mucus
occult blood

beneficial bacteria and their levels
additional bacteria and their levels (the baddies)
yeasts and their levels (the other baddies)

Sounds like your diet is great for a healthy person with a healthy digestive tract, but not for you. The carrot juice is high in sugar, so are the berries and honey. If you have candida, you don't want to ingest any sugar at all. And the probiotics could just be feeding the bad guys, that's what happened to me. I was taking Garden of Life's Primal Defense and Primal Defense Ultra for over a year before I did my first CDSA. Primal Defense is full of lactobacillus bacteria, a good one that we need. I was taking tons of these pills, every morning and every night. And my first CDSA showed no lactobacillus! So I was just sacrificing them! Like virgins into a volcano! You probably have even worse bad guys than just candida. :eek:

Does your naturopath use CDSAs?
 

brenda

Senior Member
Messages
2,270
Location
UK
Catseye

Thanks. No I will not be pigging out :) I am sorting out gluten free at present after being wheat free for a while. The rest of my diet is pretty good. I juice raw veg. I am interested in seeing Dr Farr if you recommend him but I assume that I will have to send all of my test samples to the US. Thanks Susan but I would like to see someone with a good track record with interpreting CDSA and you have not had it done, right?

Brenda
 
Messages
877
vitamins for depression

Hi Catseye,

IN an earlier post you mentioned having found ways to deal with depression with vitamins. Can you mention what natural treatments work for your depression? I seem to get that at times aloong with everything else.

Thanks
Mark
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
Catseye,
Yes then I have done the equivalent to CDSA with Metametrix. I feel so mad about all these results as I did the test 3 yrs ago here and stayed on the probiotics they recommended as I had enter, staph and strep viruses in the gut. They told me to have no Bifidus and lots of acidopholous .

Now it seems I have too much acidopholous. I am going to do what you suggest and take the test every 3 mths now I have a Doctor who has had a lot of success with other CFS people and does not want to grow rich on me. Like you, I was taking Primal Defence and I got such gut dysbiois and I was making my own Keffir too. It was amazing that the medical profession could not pick this up.

Did you do the amino acid profile?. I virtually dont have a Kreb cycle working at all.

Athene,
Thanks for the tips. I notice dr. De Merlier says we tend to have an abundance of Nickel and Paldaium.


Brenda,

All I know is this guy has been doing this gut stuff for quite some time. Knows more than the gut/aminoacid profile labs here that is why my tests went to the US Metametrix to be tested.....behind the times here.
 

Catseye

Senior Member
Messages
109
Location
SW Florida
neurotransmitter precursors

Athene,

The Dysbiocide from Biotics Research is something a licensed health practitioner has to order for you. A chiropractor could order it. I'd hate to try stuff without having a real expert evaluate it. There are so many yeast killers to choose from. I was using Candex enzymes myself for a long time. My yeast was killed off before all the bad bacteria - the yeast was a relatively easy kill compared to some of the nasties I had. Some of them were listed as "possible pathogen", not good.



Susan,

Yes, Farr would have you send the samples to the labs here that he works with. I use DHL from here. It was a big deal the first time with all these fancy forms and nobody knew what to do. They kept asking me what it was and I didn't know the polite "stool" term in Spanish, I only knew the vulgar slang word and had to use it. I was getting some really funny looks!


Mark,

It's late and I had a long day, time to get to bed for adrenal repair time. But here is a post I wrote almost 3 years ago. I've learned a lot since then and will clean it up and explain better since I'm 3 years clearer and smarter, but this is just a sneak peek so you can get an idea of what to do. My reasoning with all of the supps is that we aren't making metabolites we need and we aren't getting the vitamins and minerals from food. So I kept looking up the precursors to what we were lacking in. Like we need neurotransmitters to read and think. So I looked up what were "neurotransmitter precursors", or things the body needs to produce them. I also looked up mitochondria precursors. I was able to decrease my brain fog and increase my energy considerably just from taking the precursors. It's a lot of pills, but they are basically harmless supplements that the body needs anyway rather than harmful drugs.

I'll elaborate tomorrow:

Assuming the depression is an imbalance or lack of some neurotransmitters, you may want to try the simple nutrients that your body uses to make them. I haven't been depressed for awhile (since I've been feeling better) but now, when I read alot, my neuros get low and my brain fog increases. So I take these and it takes care of it. Below is a copy of my post to someone else with anxiety and depression. These things may sound "funky" but they are all chemicals either found in food or your body makes to use from other ones in food. So they are natural and since they aren't drugs, your doctor won't know about them. Have you tried 5htp? That's the only one not listed here:

There are many other neurotransmitters that are important besides serotonin.
Some other neurotransmitter "nutrients" like 5htp you can try are:

phosphatidyl choline
phosphatidyl serine - phospholipid - amino acid with a lipid attached
TMG (trimethylglycine) - amino acid, aka betaine - do not confuse with betaine hcl
phenylalanine - amino acid
tyrosine - amino acid
DMAE (is molecularly similar to choline) - amino acid
B vitamins - I like Country Life brand bioactive B vitamin complex, they are already "liver ready" and easy for the body to use, I feel results immediately
threonine
theanine

Here's some interesting stuff about "neuros":

5-HTP---converts to--->Serotonin---converts to--->Melatonin

Phenylalanine---converts to--->Tyrosine---converts to--->DOPA---converts to--->Dopamine
---converts to--->Norepinephrine---converts to--->Epinephrine (aka adrenaline)

Note that norepinephrine is a key neurotransmitter AND an adrenal hormone.

Here's some neuros, what they're for, sign of deficiencies, and the nutrients your body needs to make it:

Serotonin: for Emotional Stability
deficiency causes: Lack of rational emotion, feelings of irritability, sudden unexplained tears, sleep problems
body needs: 5HTP or L-tryptophan, Calcium and Magnesium

Dopamine: for Pleasure, reward, good feelings toward others, maternal/
paternal love
deficiency causes: Anhedonia - No pleasure, world looks colorless, inability to "love", no remorse about personal behavior
body needs: L-phenylalanine, Vitamin B6

Norepinephrine: for Arousal, energy, drive
deficiency causes: Lack of ambition, lack of drive, depression
body needs: L-phenylalanine
Vitamin B6

GABA: for Staying calm
deficiency causes: Free floating anxiety, feelings that things are closing in around you, unexplained panic
body needs: L-glutamine, Vitamin B6

Enkephalins: for Psychological pain relief
deficiency causes: Feelings of incompleteness, lack of fulfillment, feelings of inferiority, feelings of inadequacy, never feels "equal," fearful, insecure feelings
body needs: D-phenylalanine, Vitamin B6, Folic Acid (a B vitamin)

Tryptophan is the least common amino acid in food. It is also the most difficult to absorb into the brain. These make serotonin synthesis more difficult. Although tryptophan is mainly found in fish, meat, dairy products, eggs, nuts and wheat germ, eating these does not substantially increase serotonin. This is because these foods contain other amino acids that compete with tryptophan for absorption. Tryptophan loses out to the other amino acids.

Eating carbohydrates raises serotonin levels but eating protein decreases serotonin levels. Carbohydrates cause an insulin response that favors tryptophan absorption over other amino acids. This explains why many people who need more serotonin (like being overly-stressed or depressed) start to self-medicate by eating more sweets or starchy carbohydrates. As tryptophan absorption rises, so will serotonin production.

EFAs (essentail fatty acids) are also critical for brain function.

The levels and function of several neurotransmitters can be increased by the supply of their dietary precursors. The neurotransmitters include serotonin, dopamine, noradrenaline, histamine, acetylcholine and glycine, which are formed from tryptophan, tyrosine, histidine, choline and threonine (amino acids).

This is why alot of us are loading up on free form amino acids. Our broken bodies cannot product them in sufficient quantities.



hope this helps,
 
Messages
877
vits

catseye,

listing the vitamins along with how the may affect one's mood makes tangible and useful post and gives me something else to explore.

Thank you,
Mark