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Organix Comprehensive Profile - Comments Welcome

Messages
94
Location
NZ
Hi All,

This is my first post. I image my story is the same as many on this is site - really poor health for a year or more which is then followed by a diagnosis of CFS. In an aim to get better, I'm pursuing all areas to find the root cause / factors that relate specifically to my case.

To that end, I thought I'd post the result of a recent test - an Organix Comprehensive Profile. I wil be discussing the results with my doctor however given the body of knowledge on this site (and the elusiveness of CFS), I thought I'd invite any comments. What is interesting are the results for energy production and the markers for Metabolic acidosis.

All comments welcome!

View attachment Interpretive-Organix Comprehensive Profile[1] copy.pdf
View attachment Organix Comprehensive Profile[1] copy.pdf
 
Messages
94
Location
NZ
Hi, sorry to bump this, but I'm interested if this type of profile is normal for CFS or abnormal. Anyone else have signs of extremely low critic acid?
 

richvank

Senior Member
Messages
2,732
Hi, Gary.

I've reviewed quite a few urine organic acids test results for PWMEs, and in my experience, your results are unusual. Taken at face value, these results indicate that your carbohydrate metabolism is running very slowly, as is your fat metabolism. Would you be willing to give some more information? Here are some questions:

1. What is your diet like, in terms of total amount of food compared to an average, healthy person, and also what sort of distribution of carbs, fats and protein? Are you on a very low carb diet?

2. What is the condition of your digestive system? Do you have any of these symptoms: excessive gas (upper or lower), bloating, abdominal pain, diarrhea, constipation?

3. How often do you have bowel movements?

4. What is the appearance of your stools? Normal shape, consistency and color, or are they abnormal in some way? Any undigested food in the stools?

5. What are your height and weight? Are you able to maintain your weight, or are you gaining or losing weight?

6. Are you taking any nutritional supplements? If so, which ones and at what dosages?

7. Are you taking any medications? If so, what?

8. What is your approximate total daily urine volume?

9. As far as you know, was the urine sample taken and handled properly, and analyzed fairly promptly after it was taken? How far was it shipped?

10. Have you had any other testing done recently? If so what, and were there any abnormal results?

11. What is your body temperature, taken by mouth? If you know your armpit temperature on awakening, that would be helpful, too.

12. Have you had your thyroid hormones measured recently? If so, how did they come out?

13. Do you feel cold much of the time?

14. How would you describe your energy level? Are you able to leave your home? Homebound? Bedridden?

Answers to these questions should help in interpreting your urine organic acids test results.

Best regards,

Rich
 
Messages
94
Location
NZ
Hi Rich,

Thanks for the reply. Here are the answers to your questions, however, for an overview of my symptoms I have shared a google doc: https://docs.google.com/document/d/1GSIwe-t-xXEjmUhrq4pwhFLFOzzPS0JWrQflEDpTPx8/edit

1. My diet has be restricted based on RPAH diet .http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.cfm. Basically I had bloating/pain/gas/diarrhoea and changed my diet to try and settle it down, which it has to some degree. A typical meal would consist of low GI carbs, low fat meat and fresh vegetables. I also frequently have a rice protein supplement and MCT oil. I would say my diet is more acid than alkaline (recently ordered a ph testing kit and waiting for it to arrive) however I am try to expand my vegetable range to also include juicing. I would say I eat slightly more than average for someone who is inactive. That said, I have generally not put weight on as I had bad diarrhoea for the first few months of when my sickness started, however all muscle has converted to fat. Stats: M-185cm-86kg.

2. Generally very poor. I have all symptoms listed. The diarrhoea fluctuates between periods of occurring for a few days to disappearing for a few weeks.

3. If no diarrhoea, twice in the morning. If diarrhoea, generally 4-6 times throughout the day.

4. Normally lose and voluminous. If diarrhoea, watery.

5. 185cm, 86kg. When I first got sick, I had fight to keep weight on however now I have started to put a small amount of weight on. My body type shifted from heavily muscled ( I was an avid mountain biker) to same weight but made up of fat.

6. I'm actually taken quite a range, but in short I'm following Myhill supplement plan ((http://www.drmyhill.co.uk/drmyhill/images/7/76/Cfs_book_27.pdf) refer page 33). In addition, I also take Energy Revitalization System (https://secure.endfatigue.com/store/products/supplements/berry-splash/). There are bolt on extras as well, specifically, ALC (4g a day), creatine (5g) and L-glutamine (10g). I have also recently start a low dose (500mg per day) of Famvir to control an existing EBV infection. For a more detailed list, https://docs.google.com/spreadsheet/ccc?key=0AvvCSfX3KqGGdDBROU5HdW1kRk55aEp5cXdLZUhMMEE
 
Messages
94
Location
NZ
7. Fludrocortisone (.1mg), Endep (20mg) and Famvir (500mg).

8. About 2-3 liters.

9. As far as I know. I am in Australia and the testing was in the US.

10. The only abnormal results from other tests are, a strong positive for neurotoxins, high fat malabsorption and high cortisol. I've had endoscopy and colonoscopy which are normal as well as thyroid however pending DHEA results.

11. Haven't tested this - will do.

12. 5 months ago - normal.

13. I live in a hot climate (which I do feel) so can't really tell. That said, I do sleep cold and "rug" up more than my girlfriend.

14. Very poor. I hit rock bottom 4 months ago and have had to go on long term sick leave. I am pretty much house bound and can only manage 40mins away (with driving; shopping for food). On bad days would struggle to feed myself. That said, I am noticing a small improvement with recently added magnesium injections, although too early to tell.

Any other questions, please do not hesitate to ask.

Thanks a lot in advance.

Gary
 

richvank

Senior Member
Messages
2,732
Hi, Gary.

Thanks for posting the additional information. It's very helpful.

I'll give you some comments on your Organix panel results below, but the bottom line from these results and the additional data you have provided is that I think you have an intestinal parasite that is causing major disruption to your digestive system and is severely limiting the absorption into your body of nutrients from your food. I don't know whether it is a protozoal parasite (a one-celled animal, like an amoeba) or a helminthic parasite (a worm), but I suspect that it is one or the other, or perhaps more than one. It think that this will have to be identified and corrected before you will be able to get your metabolism back to normal and regain your health.

I don't know how easily you can obtain stool testing from your location. I will suggest some that is available in the U.S. Since you have been able to do a Metametrix panel, I'm guessing that you could also run the Metametrix G.I. Function Profile. This is a stool test that uses DNA analysis to determine the microbes that are present in the stool, and it is capable of identifying parasites (protozoa and worms) as well as bacteria and yeasts. I would recommend getting this one. Perhaps you could get it the same way you got the Organix test. It can also be ordered from www.directlabs.com without a doctor's order.

In addition, because I strongly suspect one or more parasites in your case, I would suggest doing the test offered by Dr. Omar Amin's parasitology lab in Arizona. Dr. Amin specializes in parasites, and his lab has a good reputation for identifying some that are unusual. His website is here: http://www.parasitetesting.com/ You can order the test kit yourself from that site.

Now, with regard to your Organix test results, I think they are understandable in view of the additional information you have supplied. It appears to me that your metabolism has been surviving primarily by breaking down protein from your muscles and burning the resulting amino acids as fuel for the mitochondria. This would be consistent with the high value of alpha ketoglutarate and the somewhat higher values for the Krebs metabolites beyond it compared to those earlier in the Krebs cycle (citric acid and the two following it).

Much of the carbohydrate you have consumed has been converted to stored fat, and not much of it is currently being fed to the Krebs cycle. This would be consistent with pyruvic acid being below the detection limit, and citric acid as well.

You mentioned that you have malabsorption of fat. Of the fat that has been absorbed, it appears that not much of it is going into beta oxidation to be fed to the Krebs cycle in the mitochondria. This would be consistent with the low citric acid and the undetectable beta hydroxybutyric acid (indicating no ketosis). Instead, much of it is undergoing omega oxidation in the peroxisomes. This would be consistent with the elevated adipate and suberate.

On the second page of the Organix results, the two metabolites that are below the detection limit suggest that a couple of your branched-chain amino acids are severely depleted. If we had an amino acids analysis (urine or plasma), I think it would show that. This may indicate that you may not have very much muscle protein in reserve now. I think this would be consistent with your report that your muscle weight has converted to fat.

While your methylmalonate and formiminoglutamate are not elevated, it's important to note that these markers for methylation cycle partial block depend on having adequate levels of certain amino acids and vitamin B6. I think it is possible that you do have a methylation cycle partial block, even though these markers are not elevated in your case. Your relatively low pyroglutamate suggests that your glutathione is depleted. Your high sulfate would be consistent with disruption of your sulfur metabolism, including methylation and glutathione.

Your bacterial and yeast markers are low, and that's part of the reason why I suspect that you have a parasite rather than bacterial dysbiosis and/or yeast infection. However, you could still have these as well, and the testing I have suggested should find whatever is there.

I hope this is helpful, and I'm very sorry about the ordeal that you have been having to endure. Until you are able to fix the problems in the gut, you might benefit by taking a free-form amino acids supplement. This is like a predigested protein. Maybe some of these unbound amino acids would be absorbed, and it appears that your mitochondria are able to burn amino acids. It would be important to have enough B2 and B6 in your cells to do the conversions from one amino acid to another, so that they can be fed into the furnace (mitochondria). I'm suggesting this as a stopgap measure to help your metabolism until you can get your gut working better. I don't know how well it will work, but I think it is worth a try. The main thing needs to be to fix the gut.

Best regards,

Rich
 

Abha

Abha
Messages
267
Location
UK
Hi Gary.
I see Rich has given you good advice re parasites/other things.I had terrible (explosive at times)diarrhoea for years(still have some...but there is a site badbugs.com(au?)...check on the web.It is Australian I believe and it has lots of cases/treatments there.They eventually put me in contact with a Clinic(digestive diseases?)in Sydney re the treatment for the two parasites I had at that time(a few years ago)I had a consultation by phone and i got some of my medication from Mexico/the rest in UK.One can get it in Australia too.I had testing done at Parascope Lab in Leeds.I also tried their treatment.For the final(third)treatment i used the one recommended from badbugs.If you want that I can send it by pm.During that 3/4 months when I started the treatment I lost 33lbs(but had started T3 medication then too).Another thing you should check is Rickettsia.(see Dr Cecile Jadin/S.Africa/CFS).I have that too....more difficult to test for(various rickettsias)..I used Dr Jadin's lab(Belgium/S.Africa?)Hope this is helpful.....
 
Messages
94
Location
NZ
Hi Rich,

Thanks a lot for the comprehensive info - this is really help and hopefully outlines something treatable. I'll update my progress on this thread as I get the tests underway. I've been in contact with the lab that tests for parasites for this clinic . The reference Abha offered (badbugs.org) uses this Australian based lab for treatment. If I don't have any luck, I then try http://www.parasitetesting.com/.

I've just orders free from amino acids and BCAAs along with p-5-p and b2. Great suggestion there.

Thanks again - I'll keep you posted.

Gary
 

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
Hi Gary,

You may want to look into Bioscreen fecal and parasite testing done here in Melbourne. They've been involved in research into ME/CFS, IBS etc for many years.

Bio2l Molecular Science and Biotechnology lnstitute
Building 404, Room G6, 2 Park Drive,
University of Melbourne, Parkville, Victoria, 3010, Australia
Phone: +61 3 9349-5933
Fax: +61 3 9349-1566

You can also get free parasite testing done on Medicare via your doctor at:
(Exactly what they test for I don't know...)

Pathology Laboratories - North Ryde, NSW
Level 4 97 Waterloo Rd, North Ryde NSW 2113, Australia
Phone number(02) 9878 8111
 
Messages
94
Location
NZ
Great info - thanks Tony. I think we are on the same page and I have already made contact with Patho Labs in NSW - just waiting for the testing kit to sent up.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Another thing you should check is Rickettsia.(see Dr Cecile Jadin/S.Africa/CFS).I have that too....more difficult to test for(various rickettsias)..I used Dr Jadin's lab(Belgium/S.Africa?)Hope this is helpful.....

Im going to second what this other said... get yourself also checked for Rickettsia. Im in Aust too.. Sth Aust. and the ME/CFS specialist I used to see here has found Rickettsia in 50% of his ME/CFS patients (about 300 of his 600 patients I think it was) and if you have it, this needs to be treated too.

The lab which I was tested thou was an aussie one which tested for several species of it. I thou didnt have it. I assume it isnt just Sth Aust which has a lab which tests for Rickettsia.