CFS test with 84% accuracy

geraldt52

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I had not seen that, nor heard anything about it. It seems like CCI doesn't do the greatest job of keeping the patient community up to date anymore.

I really think that a biomarker is going to be essential if research and treatment is ever going to get anywhere. Up until now researchers have been researching patients, and doctors have been treating patients, having no real idea if they have the same condition or not. It strikes me that it has just led to a soup of nonsense. I have no doubt anymore that many people on PR have an entirely different illness than I have...
 

ljimbo423

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I find it really interesting that Lipkin says that activating certain neurotransmitter systems could improve ME/CFS.

Corresponding author Dr. W. Ian Lipkin, director of CII and the National Institutes of Health (NIH) Center for Solutions for ME/CFS, also weighs in on the findings, saying, "We're closing in on understanding how this disease works."


"We're getting close to the point where we can develop animal models that will allow us to test various hypotheses, as well as potential therapies.
For instance, some patients might benefit from probiotics to retune their gastrointestinal microflora or drugs that activate certain neurotransmitter systems."

Dr. W. Ian Lipkin​
 

BeADocToGoTo1

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Metabolite testing also saved me, and I have mentioned this to many doctors.

Sadly, it is still relatively unused in the standard medical community, where it should really be a standard preventative maintenance check by family practice and primary care physicians. It is also still very pricy, but hopefully with more volume, it becoming more mainstream, and with technological improvements it will become routine.

There is a team in Japan that is even using urine metabolites to determine different types of cancers. So, hopefully in a few years time there will be many more specific metabolites that can be used in the ME/CFS realm as well.

Hopefully it will even be built into our toilets in the future...talk about early warning and prevention of awful things later on.
 

vision blue

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Metabolite testing also saved me, and I have mentioned this to many doctors.
Which metabolite tests did you do? I've only done organic acid test (urine), amino acids and intermediaries (urine and blood), some catecholamine metabolic products (neurobiogenic amines). And which companies did you use /are they availalbe direct to consumer?

Would also love to hear more on how it saved you. i've found a few things that have been helpful - magesium deficiency, taurine deficience, and i've been addressing them, but others jsut pointing to what i already suspected and/or just don't know what to do about them and/or don't know their causes (increased dopamine, decreased serotonin, very depleted glutathione, call for more glutahione, increased oxalates, possible mao trouble)
 

BeADocToGoTo1

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Which metabolite tests did you do? I've only done organic acid test (urine), amino acids and intermediaries (urine and blood), some catecholamine metabolic products (neurobiogenic amines). And which companies did you use /are they availalbe direct to consumer?

Would also love to hear more on how it saved you. i've found a few things that have been helpful - magesium deficiency, taurine deficience, and i've been addressing them, but others jsut pointing to what i already suspected and/or just don't know what to do about them and/or don't know their causes (increased dopamine, decreased serotonin, very depleted glutathione, call for more glutahione, increased oxalates, possible mao trouble)
Hi vision blue,

After 20+ doctors, where 4 specifically told me my pancreas was fine or that it was not something pathological, it was the tests listed below that pointed me in the direction of malabsorption, SIBO, Candida overgrowth and most importantly for me, pancreatic enzyme issues. I also did some of the standard vitamin tests, intracellular nutrients, neurotransmitter and hormone tests. But, I was curious why my neurotransmitters were off and why my testosterone was so low, but no doctor had an answer. Then the metabolite tests showed that I was nutrient deficient in many more areas including most amino acids. Why? So digging deeper, it opened my eyes to the absolute crucial pancreas function of exocrine pancreatic enzymes that help break down food into usable nutrients. The metabolite test from Genova actually mentioned specifically the need for pancreatic enzymes.

Most people likely will not know that they are not producing enough enzymes, and certainly when we get older, this functionality decreases. The body tries to compensate as best as it can by begging, borrowing and stealing nutrients from your own muscles, organs and bones. Taking supplements also helps delay the diagnosis. Most doctors have no idea how to recognize the symptoms or even test for it properly unless you get extremely damaged. Normally an EPI (exocrine pancreatic insufficiency) diagnosis is not given until 90% or more of that function is gone. Which is ludicrous, as having 20% less functionality is also damaging, but just takes longer for the effects to really start hitting home.

If you think that around 50% of the US population is now pre-diabetic or full-blown diabetic, and 25-50% of those will also have exocrine issues of the pancreas, it is little wonder the supplement industry is doing brisk business, and nutrient deficiencies and chronic health issues are rampant. I had to dig a little deeper as to why my pancreas damage happened in the first place, especially since I always thought I lived super healthily. I dedicated a whole chapter to the hypothesis of the pancreas being the proverbial canary in the modern food (and water) supply. I was quite shocked about what I learnt.

The most helpful metabolite tests for me were:

The Great Plains Laboratory

Nutritional and Metabolic Profile (OAT and Amino acids)

Genova Diagnostics

NutrEval FMV or ONE (Optimal Nutritional Evaluation) FMV. I added the very helpful Essential and Metabolic Fatty Acids Markers add-on as well.

Without the metabolite tests opening up an avenue to pursue, and persuading (I had to be very adamant) my doctors to order additional pancreas related tests like comprehensive stool, MRI MRCP of the abdomen, elastase enzyme, in addition to SIBO and Candida treatments (additional causes of malabsorption ) I would not be here today!

Here is the thread with more on my experience:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Please let me know if you have any questions.
 
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vision blue

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Thanks. ah, pancreas. I was able to rule that out pretty effictively with comphrensive stool analysis- or at least no deficiency of the pancreatic enzyme.

sounds like we had some of the same tests lke the OAT from Great plains and the amino acid. No candida growth for me. as i mentioned, helpful in some ways, in others just reaffirmed what i suspected but causes unclear.

any interest in trading OAT and AA test results? (names removed)