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.
