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Desperate to know what these results mean

dan062

Senior Member
Messages
120
Just a quick reply before I go:

The January tests were done by AML in Antwerp - Belgium and by RP Medical laboratory Roman Pais in Nijvel – Belgium, a reputable lab over here in Europe. Executed by Dr Mussarella, a well known alternative hormone specialist in the Netherlands, but not on the right track as far as my daughter is concerned.

Than we changed specialists.


The mineral hair analysis I have to look up, can’t remember.


The June results apart from the hair analysis – ELN - European Laboratory of Nutrients in Bunnik, the Netherlands


The stool samples June 2014 MGlab –Leeuwarden - the Netherlands – Lab for microbiology and gen technology.


List of supplements I will post tomorrow. Also I will of course reply to all of your comments, thank you so much!

I think you need to decide whether you want to pursue this through conventional medicine or alternative treatments.

If you have legitimate concerns about possible organ damage (if you're sure that what you describe as jaundice actually was that - were the sclera of the eyes white or just somewhere on the skin/face?), I think you'd be crazy not to go to Western doctors.

If you decide to do that, I'd probably not mention any of the tests above (as if you've had difficulty being taken seriously up to know it will be nigh impossible if you mention things like hair mineral testing), but perhaps take the cortisol stuff as a hint to ask for an endocrinology referral.

If you want to continue seeing alternative medicine people then you should probably ask your naturopath, and not us, what all of the above could point to.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I agree with dan062. To my mind either these results indicate an extremely rare condition or that the lab quality control is inadequate and they do not mean anything. If this is an extremely rare condition then the only person who will know anything about it will be a specialist, maybe endocrinologist, in a tertiary referral University town hospital clinic. Alternative therapists will have never seen a case.

If she has ME, then you may find more help outside the conventional hospital system but more or less by definition if it is ME then these tests are not relevant. People with ME do not have all sorts of strange results all over the place like this if measured in a hospital lab.
 

Sidereal

Senior Member
Messages
4,856
I agree with dan062. To my mind either these results indicate an extremely rare condition or that the lab quality control is inadequate and they do not mean anything. If this is an extremely rare condition then the only person who will know anything about it will be a specialist, maybe endocrinologist, in a tertiary referral University town hospital clinic. Alternative therapists will have never seen a case.

I know one person with the condition that I think you might be alluding to. I don't know if it's extremely rare or just extremely rarely diagnosed because patients are sent away with a diagnosis of PCOS.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi, perhaps bearing in mind the comments by Jonathon Edwards, I wonder how you have got on so far with conventional medical system? have they been any help at all, what specialists has your daughter seen through the hospital, GP etc?

If you have been down this route and it has led to no help or concrete answers then I fully understand your position - many of us here have been there and tried hard to find answers and received no help at all.

If you have been down this route without success than I would second the suggestion to look deeper, beyond vitamins etc and seek the root cause - coeliac? Lyme? co infections? viral?

The Asperg... fungal result is a worry and should be looked at by a regular Dr.

Good luck for you and your daughter... she is so lucky to have you helping her.
 
Messages
32
Hi everyone, what an overwhelming number of responses, for which I am extremely grateful.

I will try and address all queries but some general issues in this post.

First of all, the lab results I have posted were the ones that were outside the reference values so for instance because T4 was okay it is not on the list I posted. This might make it seem an odd and incomplete list. The tests were ordered by two different alternative specialists.

The tests carried out in January were ordered by a hormone specialist, someone who worked closely and was partly educated by the family Hertoghe, THE alternative hormone specialists in Europe. This practitioner is also a well established person in the alternative circuit, although some love him and some hate him. His treatment is expensive and his lab tests are extensive. he prefers the labs in Belgium, probably because of his background with the Hertoghe family. We decided to look for another practitioner as my daughter was getting worse by the day, even or maybe due to the supplements he prescribed (I will post the list later).

The tests in June have been carried out by a different lab, ELN, also mentioned on this forum I noticed. They work in close co-operation with the Health Diagnostics & Research Institute in South Amboy, NJ, USA. The minerals in hair (also executed by ELN and their American partner) is, I know a controversial test and therefore the mineral test was more or less repeated in 24 hr urine and showed some simularities.

The practitioner she is seeing now is also treating her with supplements but like we experienced before, she is not getting any better. Since she started supplementation she only seems to have gone further down hill. I know that it sometimes takes a while before improvement kicks in, but I am so worried.

My daughter has seen many hospital specialists: endocrinologists, internists, and gynecologists, but the trouble is they don't seem to have an overview, just their own particular field of knowledge and no idea about supplementation and healthy foods. They didn't work closely together and also kept referring my daughter without digging a bit deeper. This made my daughter very anti hospital specialists, so much so that now she doesn't even want to consider going back there.

Her skin is jaundiced only, her eyes are normal.
The iodine supplement was given to her because she was lacking iodine and to treat her PCOS. She still takes a high dose of this today.

More later, including supplements list and reply to other questions. Thanks so much, this is really helpful.
 
Messages
15,786
@L_avender - I also had tests done via ELN. They seem to do okay with some types of testing, but they gave me very bizarre results for the few items I ordered regarding infection and autoimmune markers. I don't think they know what they're doing with those tests. I emailed them for clarification, and they sent the results in a saner format but some of the values were completely different from what they initially sent me.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I know one person with the condition that I think you might be alluding to. I don't know if it's extremely rare or just extremely rarely diagnosed because patients are sent away with a diagnosis of PCOS.


I was not in fact alluding to any known disease - the result are too confusing to fit any disease I have heard of.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
First of all, the lab results I have posted were the ones that were outside the reference values so for instance because T4 was okay it is not on the list I posted. This might make it seem an odd and incomplete list. The tests were ordered by two different alternative specialists.

I think that may be a small part of the problem. In order to interpret abnormal tests one has to have the normal ones too because it is the combination that gives a diagnosis in many cases. Nevertheless, there are too many odd abnormalities that do not fit together.

I am afraid that an association with a 'well known alternative hormone specialist' is not encouraging. From what I have seen of activities of such people (with a very similar name) through this list I would run a mile.

Since you are new here I should probably point out that I am a retired professor of medicine interested in the problem of ME and hoping to be of some help not least because it is clear that the standard health care system is completely failing to deal with ME. The more I see of results on the list the more convinced I am that they are often coming from labs whose results are unreliable. Labs outside the main healthcare system have an interest in selling 'abnormal results' to help their doctor friends find things to treat and send more people for more tests. Things are bad enough within government based healthcare so it is bound to be worse outside.

It is not possible to say that any one result is unreliable - obviously. However, if one looks at a range of results it becomes easier and easier to see that something is not right. It is a bit like seeing someone wearing a wig. The hairs may be real and the colour may be OK and the cut may be plausible but usually there is just something not quite right. Often it is just too tidy. I see unreliable results at research meetings all the time and the most obvious thing wrong with them is that they look too consistent or too tidy.

I cannot therefore point to any one lab as being a worry but Valentijn's comment may be relevant.

I appreciate that you have not had benefit from hospital doctors but maybe they are just trying to do what they can and there isn't anything more to do? Surely you can arrange the healthy diet yourself - that is easy. You talk of supplements but you say they are not helping. I suspect there is no need for them - do we have a reason to think they should be?

On a technical point if her skin is yellow but not her eyes she is not jaundiced. The commonest reason for yellowness is just eating a lot of carotene from vegetables which does no harm.
 
Messages
32
One thing I forgot to mention (sorry about that) which could be very important is that she used to be a vegetarian for a couple of years (from 2008 until 2010) and then switched to veganism until June this year.Since she started becoming a veggie things have gone downhill. Her stress levels increased and haven't stopped being extremely high. Now she eats fish and bone broth from biological origin and eggs (no milk or milk products). She eats everything home made and biological. No bread, nothing with gluten, read all the labels carefully. No ordinary sugar, just raw honey, and coconut blossom sugar. Sometimes a few drops of liquid stevia.

The supplements she took February until June:

Dibencozide Complex (AOV) met B12 en Foliumzuur - 2x daily 1 tablet
B12 injection - 1 x per week (1st 10 weeks, then 1x month)
Selenium (AOV) 200 mcg - 2x daily 1 capsule
Iodine (Biotics) fluid - 20 drops per day in water
ADP (Biotics) - 3x daily
Probactiol IB (Metagenics) - 1x capsule evening
Glutagenics (Metagenics) - 3x daily one measuring spoon in water
Cytozyme AD (Biotics) - 6x daily
Adrenostim (Metagenics) - 1x Sol en 1x Luna
Dopatropic (Biotics) - 1x teaspoon in the morning
Inositol (Inocell) - 2x daily 2 capsules
Choline (Bonusan) - 2x daily
GLA (AOV) - 2x capsule daily
Magnesium-Calcium - 2x daily
Magnesium oil spray - As and when required
DCI D-Chiro Inositol (PCOS Solutions) - 2x daily
B-complex 100 - 1x daily
Spirulina (Nature's Perfect Foods)- 2 tablets daily
Vitamine C - 1000 Mg - 1 tablet daily
Vitamine D3 (Healthy Vitamins) - 1000 ie - 1x daily
Q10 / actif10 (Trenker) 2x daily

After taking these supplements for a while she became extremely agitated and stressed. She was still vegan then.

When we switched prictitioners, he persuaded her to take some meat products and eggs.
After changing practitioner and the second lot of lab tests her list changed to:

Acetyl-L-Carnitine (NOW) 500 mg - 2x daily
Chelated Magnesium (Carlson)
Lithium Orotate (KAL) 5 mg - 2x daily
Vanadyl Sulfate (LifeExtension) 7.5 mg 1x daily
Folic Acid (NOW) 800 ug 1x daily
Choline Inositol (NOW) 2x daily
NAC 600 mg (NOW) 2x daily
Taurine (NOW) 500 mg 2x daily
L-Theanine (NOW) 2x daily
Milk Thistle (Solgar) 1x daily
Chromium (Toppharm) 200 mcg 1x daily
Formula VM 75 (Solgar) 1x daily
Maganese 5 mg (as citrate) (Lamberts) 1x daily
Chalated zinc (solgar) 22 mg 1x daily
Selenium (Solgar) 100 ug 1x daily
Vitamin E with selenium (Solgar) 1x every other day
Vitamin A 5000 IU (Solgar) 1x daily
Ester C Plus vitamin C (Solgar) 100 mg 1x daily
Eskimo Extra Omega 3 (Metagenics) 1x daily
Iodine liquid (Biotics) 20 drops in water
Bio-D-emulsion (Biotics) 3 drops daily
Q10 / actif10 (Trenker) 2x weekly
Potassium magnesium aspartate (Solgar) 1x daily
Bio Kult (Protexin) 2x daily
Probiotic powder - 1 teaspoon daily in water
Potassium powder - 1 teaspoon daily in water

Lavender
 
Messages
32
Hi Jonathan,

Your response really worries me, the info about the unreliable labs. It is so hard to know who to believe as all doctors book positive results with one patient and not with another. We have gone down this path because we trusted certain people to know what they were talking about (GP included). Your response makes me shiver, thinking I might be doing the wrong thing alI together.

As far as the hospital specialists are concerned, I am sure there's nothing more they can do because if they could, they would, but it hasn't encouraged my daughter to continue seeking help from them. One thing is obvious, she is ill, she has been ill for a long time, I see my daughter going downhill and I am desperately trying to get to the bottom of the problem. I aso think Valentijn's response could be relevant and I think we should definitely have some reliable tests done to test aspergillus and celiac disease. I am going through the responses and try to make a list of things to test.
 
Messages
32
I also had tests done via ELN. They seem to do okay with some types of testing, but they gave me very bizarre results for the few items I ordered regarding infection and autoimmune markers. I don't think they know what they're doing with those tests. I emailed them for clarification, and they sent the results in a saner format but some of the values were completely different from what they initially sent me.

Valentijn, that really worries me. This is playing with people's lifes! I am so worried now. Feel like chucking all the supplements and see how she copes without them, as they were all based on those results.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
Your response makes me shiver, thinking I might be doing the wrong thing alI together.

I guess that was my intention, at the same time trying not to make things worse and very aware that when nobody has any useful suggestions it does not help having a clever dick saying don't do that one. I have come to understand the frustration of people with this sort of illness. I have experienced something similar in a different context and it is nowhere anybody would like to be.

If it was me I would stop all the supplements and be guided by a natural sense of what is nourishing.

I hope you find someone who can advise you well.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I have just registered today, but I've been reading lots on this forum as it is the best I have found so far. As I already said in my introduction post, I live in the Netherlands and have a 26 year old daughter who is extremely ill, no one seems to know what exactly is wrong with her, but lab results show she has serious problems in many departments.

I'm sorry the list is so long and probably confusing but I hope someone might see some kind of coherence and advice us what we are up against here.


Hello. I will try and help you. I do not agree with dismissing these abnormal results you have shared as not ME related, but I do agree with repeating abnormal tests with a clinically validated test and accredited lab IF the results are indicative of disease and treatment requiring further investigation.

It's accurate that many labs are out to make profit, because they are largely unregulated and select obscure measurements. If what is being presented is established to be associated to known abnormalities, then I would ask for an opinion from your doctor/ME specialist and/or re-test at least 7 weeks later (should rule out if there was infection on the day). As frustrating and costly as it is, it's important to have more than one piece of evidence of inflammation, before getting the idea the level is chronically elevated. Sadly, this is exhausting for the patient, and the bank account.

Here is my opinion, and I should add many, if not all of your results, I share them too as a patient, which perhaps should tell you something as I didn't use the same labs as you and got mine done in very expensive private hospitals in the UK. I would also know, that many other people on this forum will share you results I have put in bold below.


Potentially useful findings that showed abnormalities on your test:

Low carnitine: Found in PWME. This will nail your mitochondrial function, and thus muscles if proven on a reliable test. There are multiple forms of carnitine and a proven deficiency could be possible, which if low enough would require injections ordered by a doctor.

Aspergillus spp IgG elevated: Immune deficiency/environment associated.
No surprise to see someone withe ME getting this as over time, the immune system in ME becomes damaged through chronic activation. You may know of a phenomena, that at first patients declare they never get anything (forgetting they are housebound and out of groups/society) and then decades later resemble a person more like with HIV and get everything going...also seen in severe Late state Lyme/Bartonella. ;)

Low Iodine: Found in PWME also. This could explain (other than damage thyroid receptors) why PWME 'look' hypothyroid, but aren't when tested. You could supplement with Seaweed (Kelp) but be careful for allergies. Kelp has lots of iodine in it, but tastes how it smells.

Raised but not high, HS-CRP: The result is exactly as I would predict in someone with ME.
Elevated over a healthy control, but not massively high. Note that HS-CRP is cardiac risk marker, and not 'CRP' or ESR. Elevated CRP/ESR fits in with classical inflammation in autoimmune conditions and infection. ME has novel inflammation (oxidative stress and cytokines), not classical. Thus the finding of mid-range titre HS-CRP is precisely what someone with ME would have, in my view.

Low salivary cortisol: Found in PWME. If other signs of adrenal failure are present, such as weight loss and low blood pressure I would get a 24hr Cortisol Urine, ACTH etc. Also consider rule out Addison's disease with a 'Short Synacthen Test' (performed in Hospital). A home testing of Cortisol/Adrenaline for 24hr urine, if stressed, can produce a false baseline result including if taken on a hospital ward. The patient needs to be as calm as possible. Also if ME is the probable diagnosis, then the 'low cortisol' is central (brain dysfunction) due to Hypothalamic Injury, and not organ (adrenal gland) associated. Thus, it cannot be 'fixed'. HPA dysfunction is hallmark of ME and has been demonstrated in numerous studies over the decades.If you were worried, get an adrenal CT scan to see if there is evidence of 'destructive atrophy' of the organ. NB: A one shot cortisol blood test, is largely useless. 24hr urine is much better. Many things affect the result, including having low blood sugar in the morning, producing a falsely elevated morning result.

Aldosterone: Curiously, in your test is normal, but the level depends on if you were having a low or high salt diet when taking the test. Did you check for this? Aldosterone is often LOW in PWME who have POTS as is low normal urine sodium taken over 24hrs. This would help reduce blood volume, and worsen orthostatic intolerance. One explanation, is the patient doesn't have POTS or OI symptoms, hence it's normal.

Low manganese and Zinc: Found in PWME. I'd be careful supplementing with any manganese as Lyme
loves this. (New research has found the agent behind Lyme (Borrelia) uses manganese, not Iron).

Amino acid abnormalities: Found in PWME.

Liver enzyme abnormalties: Found in PWME.
PWME are sometimes accused of being secret alcoholics, due to alterations in Liver Function Tests (LFT's).

Oxidised Glutathione: The level is slightly elevated but
not normal. Gluathione abnormalities are well known in PWME.

VItamin A deficiency: Often found in PWME.
B2 deficiency: Unknown what this means.
Vitamin D: Borderline normal. PWME always have low Vitamin D. They can also have paradoxically very high Vitamin D 1, 25. Perhaps this is due to a gene defect? So be careful taking high doses of Vitamin D, as you may elevate you Vitamin D 1, 25 to very high levels. (NB: Vitamin D 1,25 is rarely tested for and is expensive too. It's only useful to compare your level to Vitamin D 25).

Secreatory IgA: Commonly found in PWME. No surprise this is very low.


Indifferent results on your tests associated to ME:


Malondialdehyde: This is an oxidative stress marker. You'd expect it to be high, or very high as PWME can have this (or other high markers for oxidative stress). There are many factors that can affects test results though, such as quality of assay and time taken to lab (e.g. not measured within 24hrs).

Q10: I'd expect this to be low to low normal in PWME. If it's good, I expect
the patient it taking a supplement. NB: The same goes for the other vitamin
and mineral tests were elevations are shown.


Likely not relevent results on your tests:
I'd ignore hair tests. No hospital will take these seriously to make a diagnosis, short of toxicology reports.

Most your tests (the ones I have commented on here) do correlate with private tests patients carry out on themselves. NB: Your assay results are those that mainstream medicine are unaware of, and thus would mistake your results for not being ME related, and then tell you you don't have ME.

But, Science doesn't know what ME is yet and many physicians will think an ME sufferer, is always a psychosomatic fatigue sufferer (psychogenic in many countries such as UK, Spain etc) and ignore your results. Especially if you get private testing done, and challenge them on their misdiagnosis of psychosomatic.Be aware, that psychiatrists think that patients (or parents) who get private tests done that prove abnormalities, are 'harming' themselves, or their child! Insane, but just be aware of that.

Whatever ME is, it's not a chronic fatigue state, but a complex infection associated
autoimmune, oxidative stress, tissue injuring horrible condition that affects people's lives dreadfully.

The results you have are useful, but not confirmatory of any condition, including ME, in terms of 'official' diagnosis. Official line of ME though, is to correlate it to CFS (FALSELY) and make it mysterious and not use any specialist tests. If you do have specialist tests, then the abnormalities come flooding in.

I would stick with oxidative stress, and evidence of chronic immune activation if no doctor can diagnose, doesn't want to, or gets the wrong diagnosis.

If you really want to nail the diagnosis to probable ME, I'd test for specialist inflammation markers such as: Perforin and T Cell, B Cell, NK activation markers/Prostaglandin E2/TH1/TH2 Cytokines/Chemokines/Interferons/TGF Beta 1/VEGF/ and PLAC-2 for cardiac enzyme risk and Fibrinogen for heart attack/stroke risks via atherosclerosis. NB: Atherosclerosis and ME are hugely neglected, and very dangerously so in long term housebound patients who never exercise are overweight (high cholesterol) and pour out tonnes of oxidative products increasing the risk of endothelial damage, and eventually plaques which can be fatal.

All of these specialist inflammatory markers if tested above should be sky high in severe ME sufferers, and the same findings are shared by those with Late State Lyme disease/Bartonella...two conditions said by the Government not to exist!

With private ME CFS research, we will see that people diagnosed have very real, and proven cellular dysfunctions. There is no 'mystery' after all for reasons for biologically based chronic fatigue states found in PWME.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
But, Science doesn't know what ME is yet and many physicians will think an ME sufferer, is always a psychosomatic fatigue sufferer (psychogenic in many countries such as UK, Spain etc) and ignore your results.

Yes but I don't think it is psychosomatic but I do think these tests are meaningless.

All of these specialist inflammatory markers if tested above should be sky high in severe ME sufferers, and the same findings are shared by those with Late State Lyme disease/Bartonella...two conditions said by the Government not to exist!

So why 'research 1st' at the MRC Research Collaborative meeting attended by top researchers from three continents was everyone in agreement that no consistent abnormalities have yet been found despite the fact that everyone there was quite convinced (maybe except one!) that this was not a psychosomatic illness. Where is the reliable evidence? You cannot say that anyone who cannot see the evidence is just a stuffy old psychobabbler. It won't wash any more.
 

dan062

Senior Member
Messages
120
Have a look into carotenemia, as @Jonathan Edwards mentioned, and its secondary causes (carotenemia in the presence of a normal carotene intake). If I remember correctly these are (generally) thyroid, kidney, and liver problems, but as she seems to have had a decent workup with input from all those specialities (and presumably basic lab work and urinalysis) I very much doubt any of these are the causes. And with all those supplements I'd put my money on it related to excessive carotene.

The supplement intake, to me, seems vastly excessive. At the least, you could rationalize many of those into a good multivitamin, but if your daughter's condition is not improving why continue?

I think there's also a very real chance you could be doing more harm than good, besides wasting money and further complicating things by having her adhere to a complicated and ineffective medication regime.

Supplements all need to be metabolized by the liver and kidneys and I can't think of anything on that list (bar milk thistle and vitamin D, if you're in the Netherlands) that couldn't be obtained conventionally through diet with all the various cofactors and synergies that science hasn't yet uncovered.

@Research 1st has given an excellent interpretation of the labs above, from a layman's perspective (I presume). I think the only one that could lead anywhere useful medically, is cortisol, but as you say you've seen an endocrinologist I presume that things like Addison's and adrenal insufficiency have been considered and ruled out. Check out some of the specialist ME testing he mentioned. I might do the same.

I sympathize greatly with your plight. I know how frustrating it is being bounced around between specialities with little in the way of communication between the specialists or willingness to try to see a bigger picture, but this is the system, unfortunately, and you're better working with it than against it so long as you have the money to.

Again, if you suspect a cause other than ME there's really no advantage to hunting for a diagnosis through alternative practicioners. At the very least, keep trying for a diagnosis with the mainstream docs, and at that point see if alternative medicine has any alternate or complementary ideas to treat whatever the condition is found to be.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Yes but I don't think it is psychosomatic but I do think these tests are meaningless.

So why 'research 1st' at the MRC Research Collaborative meeting attended by top researchers from three continents was everyone in agreement that no consistent abnormalities have yet been found despite the fact that everyone there was quite convinced (maybe except one!) that this was not a psychosomatic illness. Where is the reliable evidence? You cannot say that anyone who cannot see the evidence is just a stuffy old psychobabbler. It won't wash any more.

Hello there doctor.

Regarding ME, you mention: ''Why are there no consistent abnormalities?''

Answer: Because CFS/ME is a heterogeneous fatigue disorder requiring no test abnormalities. No consistent abnormalities is ever statistically possible with CFS, in the same way as if I diagnosed Lupus on the basis of unexplained chronic tiredness (requiring no signs or abnormal tests).

You mentioned: ''You cannot say that anyone who cannot see the evidence is just a stuffy old psychobabbler. It won't wash any more''.

i did't say that. The fact is, lack of consistency in research is due to the diagnostic criteria of CFS using no biomarkers. In contrast, researchers like Dr Jose Montoya (Infectious disease specialist) do find consistent abnormaltiies, to the extent he has developed a cytokine assay that determines between moderate and severe CFS (ME). Consistency is possible once you weed out disease based CFS using assays, from vague fatigue criteria CFS.


You say:'' These tests are meaningless''.
Answer: I respectfully disagree.

The preliminary evidence of a mold infection (elevated Aspergillus antibodies) in a patient suggests possibility for the development for a serious lung disorder such as Pulmonary Aspergillosis that requires X-Ray. Add in other factors such as immune suppression or asthma and this could be fatal if left untreated.

Related, Brewer et al, 2013, found that 93% of CFS participants in their study were infected with mold species.
Source: http://www.mdpi.com/2072-6651/5/4/605

We also have preliminary evidence of low Zinc. Deficiency in Zinc will lower immune defense, and increase susceptibility to infection.

Personally I would't call that meaningless.
 

Kati

Patient in training
Messages
5,497
Imagine someone with stomach ulcer refusing a simple course of antibiotics and instead decided to be treated only with nutrition. so that person would decide that gluten was the problem. then perhaps can't absorb B-12 well. then perhaps stop all acidic food because there is too much acid reflux. Then doing fasting because in the end eating might just be the problem. We now know that stomach ulcers are caused by a bacterial infection and that it is treated by a simple course of antibiotics.

Perhaps, nutrition has nothing to do with your daughter' condition and perhaps the supplements are mere placebos or doing nothing at all.

The over emphasis of nutrition and natural cures with our disease is sin my opinion ludicrous and fruitless. We are still sick despite changing eating habits and guzzling thousands of dollars worth of supplements, all of which have been recommended by lay people, other patients or alternative practitioners who have a pet theory.

You do not need to answer here, but what is your daughter's functioning, how many hours does she spend upright, sitting or standing. Is she terribly underweight? Is she able to have a social life? Is she able to care for herself?

First an accurate diagnosis would be best, along with bloodwork coming from a hospital, especially if her situation has deteriorated as of late. And it would be best that the diagnosis does not happen in a patient forum but by a licenced medical doctor, even if you had to travel for that.

Most of us know that mainstream medicine is not good with 'unexplained' disease like ours, however they are very good at screening major diseases that require treatment, including liver, blood kidney, hearts, vital organs really. And this would be a first step.

Best wishes.
 
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CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Low salivary cortisol: Found in PWME. If other signs of adrenal failure are present, such as weight loss and low blood pressure I would get a 24hr Cortisol Urine, ACTH etc. Also consider rule out Addison's disease with a 'Short Synacthen Test' (performed in Hospital). A home testing of Cortisol/Adrenaline for 24hr urine, if stressed, can produce a false baseline result including if taken on a hospital ward. The patient needs to be as calm as possible. Also if ME is the probable diagnosis, then the 'low cortisol' is central (brain dysfunction) due to Hypothalamic Injury, and not organ (adrenal gland) associated. Thus, it cannot be 'fixed'. HPA dysfunction is hallmark of ME and has been demonstrated in numerous studies over the decades.If you were worried, get an adrenal CT scan to see if there is evidence of 'destructive atrophy' of the organ. NB: A one shot cortisol blood test, is largely useless. 24hr urine is much better. Many things affect the result, including having low blood sugar in the morning, producing a falsely elevated morning result.

@Research 1st, thanks for taking the time to review all these tests. I'm just going to comment on this one area.

The 24hr urinary free cortisol test is best used as a test to screen for Cushing's syndrome (high cortisol) and for following the treatment of patients who are receiving cortisol replacement for adrenal insufficiency and Addison's disease.
When adrenal insufficiency or Addison's disease (total adrenal failure) are suspected, the preferred method of testing is a fasting 8 a.m. cortisol (to see if your body does indeed react and respond to low glucose levels). When a low 8 a.m. cortisol is encountered, it should be followed up by an ACTH stimulation test to see if the adrenals will produce cortisol when they are stressed. See http://www.clevelandclinicmeded.com...inology/diseases-of-the-adrenal-gland/#cesec2

An early morning (8 am) plasma cortisol level lower than 3 μg/dL confirms adrenal insufficiency, whereas a value higher than 15 μg/dL makes the diagnosis highly unlikely. Cortisol levels in the range of 3 to 15 μg/dL may be seen in patients with primary, secondary, or tertiary adrenal insufficiency.
Algorithm for the diagnosis of adrenal insufficiency (AI)

adrenal flow chart.jpg
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Low carnitine: Found in PWME. This will nail your mitochondrial function, and thus muscles if proven on a reliable test. There are multiple forms of carnitine and a proven deficiency could be possible, which if low enough would require injections ordered by a doctor.

If the labs are accurate, she has low free carnitine but high acylcarnitine. That is not a typical ME finding. Neither is it a primary carnitine deficiency sign. It is found typically in people with a fatty acid oxidation disorder. It is unwise to suggest treating with carnitine based simply on finding low carnitine without finding out what is actually wrong.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2557099/

"Primary carnitine deficiency should be differentiated from other causes of carnitine deficiency. These include a number of organic acidemias, defects of fatty acid oxidation and of the carnitine cycle (28). In all these disorders, analysis of urine organic acids, plasma amino acids and acylcarnitine profile, in conjunction with the clinical presentation, allows a definitive diagnosis. Low carnitine levels can also be seen in patients with generalized renal tubular dysfunction, such as renal Fanconi syndrome. In this case, the urinary wasting of other compounds, such as bicarbonate, phosphorus and amino acids, allows a net differentiation, since patients with primary carnitine deficiency have selective carnitine losses."
 
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I gather from her MCV that she's been supplementing B12/folate? Could you post what she's taking? Unfortunately, sometimes supplements make matters even worse, especially when one is in a severe ME/CFS state.

Hi Sidereal, I posted the list of past and current supplements yesterday. I have the feeling she is not doing so well with this many supplements.