Has anyone had a test like this:
http://www.truehealthlabs.com/TH1-TH2-Balance-Panel-Basic-p/LC_815250.htm
Any thoughts on whether it's worth the money?
Basic Answer: It depends on what you want to do with the results? As a basic test of some abnormal shift in immune profile, then yes if abnormal it's better than nothing at all. However, I would have far more tests than just one, if you are trying to 'prove' you have a low grade chronic immune activation along the lines of ME. Even then I doubt there is anyone to show, and if even if there is, unless you're a wealthy American who can travel to California to see private doctors, you won't get any help to be quite frank. So only get the test for your own satisfaction to see if it correlates with other patients findings, rather than think it's a golden ticket into a doctors office, as it won't be.
Complex Answer:
I buy
all the tests related to research in CFS & ME wherever possible (such as De Meirleir and Lyme) and I photocopy the results and give copies to my medical lawyer. I've got pages upon pages of abnormal tests results (over multiple decades), but officially, 'nothing can be found' by the NHS. I know, it's hilarious.
The reason Government based heath care systems are utterly useless for ME (as CFS), is the employees are ignorant about the research in ME and CFS. Because of this they can become
arrogant, and believe the tests for conditions you don't have, show you don't have much wrong with you, because they can't find anything, using the wrong tests, so you must be a somatizer after all. (Yes, bizarre logic).
The fundamental reason for this error, is ME is a very complex disease with subtle, or fluctuating immune activation markers, that often have to be 'caught', and you have to know what tests to run in the first place (always follow research). An hard to diagnose condition, an autoimmune condition, such as Lupus, in some ways is the same. Unless you go into the ER with sausage fingers or some horrible pulmonary emergency with sky high levels of inflammation, there is the scope for some initial doubt the patient is being 'honest' and patients aren't necessarily believed. (ME is like this, but much much worse, because the tests they run, won't show anything at all, ever. So the patient is never believed and sent home with their tail behind their legs).
This is when you have to learn to think outside the box. My general rule is, never believe or hope private tests will be abnormal, until the test result says it is, and then when it is, see what this means in terms of the science. I thus am prepared to invest 80% in 'dud' tests, (expenditure), if 20% of my results are hitting the jackpot. Also, I want these tests to be worth showing doctors, or specialists. I try and avoid, some weird and wacky tests, few will believe.Remember just because a doctor tells you something is wacky, doesn't mean it
is.
Cytokines, are just that. Cytokines can be elevated due to stress, in major depression, and in infection and in practically any condition. So when you test, you need to know that your profile, isn't just some odd suppression or elevation and it's associated to known research, or (at minimum) science presentations by doctors who see people with ME, or public comments by experts in the area of infectious disease who see 'CFS' patients, who would never go public unless they're sure what they're saying is accurate.
For example government employees who are running a CBT/GE programme
may tell very ill ME patients they ''cant' find anything wrong'', but I've learnt this is total misinformation and there is
lots wrong. NB: I am basing this on if you are
severely affected at least
and if you've been so ill for so long, your immune system is now deranged.
I am just like someone else with ME remember, nothing special, but look what I've found by reading Lyme research (I don't have Lyme diagnosis, all my blood PCR tests are negative), listening to very ill patients, and also having an open mind of learning new facts.
Consistent findings of INFLAMMATION/IMMUNE ACTIVATION of an 'ME' non clasical (ESR/CRP) type I found, that mirrors countles other patients with 'ME' and 'Chronic Lyme' (I am Borrelia PCR negative of all types).
ESR of 0 with occasional elevation. An ESR of 0 is not normal and known in ME.
Elevated HS-CRP (more cardiac related) with normal CRP. Copies ME research.
High cfNA (
High cell free DNA is a marker of inflammation, likely oxidative stress).
Normal Complement with
Elevated Alternative Complement Pathway
Deficiency of
C3a, C4a (This is not normal, and I don't have Lupus or Diabetes).
Elevated
LDH
Elevated
Fibrinogen
Elevated Prostaglandin E2 (
PGE2) - seen in Lyme.
Very High Cytokines (IL2, IL-4 (TH1/TH2), IL-6 IL-8, IL-10).
High Interferon Gamma (
IFN-g) with Low Inteferon Alpha (IFN-a) -
Elevated Chemokines that are associated to brain neurons, glial cells (
MIP-1, MCP1)
Elevated Growth Factors (
TGF-Beta 1,
VEGF) also seen in Lyme,HIV etc.
Markedly raised
IgE - allergy status which explains my symptoms.
Raised raised
IgG Subset
Very low secretory
IgA (vital for pathogen defence in the gut) - many with ME find this.
Elevated
Blood Viscosity - a sign of inflammation/infection - ditto
Altered shape of Red Blood Cells (a sign of inflammation, e.g. oxidative stress) - ditto
Very high markers of oxidative stress - ditto
Long term evidence of
elevated Lymphocytes and/or
Monocytes, but occasionally normal.
Activated Lymphocytes on
Blood Films.
All of these tests above will not be tested for by the NHS in the UK, because they are specialist.
This situation can be taken advantage of by people who know what they're doing, such as 'CFS' immunologists, who will lie to your face and tell you that Cytokine tests are useless and a waste of money. Nothing, is a waste of money, if it helps you escape being left at home to rot, by leaving a misdiagnosis of CBT/GET based CFS though
Doctors who dismiss all my findings, that all my results are worthless, they do this on the undeniable fact classical markers of inflammation such as ESR or CRP are usually normal in PWME, so there is no diagnosis they can give us that is 'proof of ME', which irks them and make them hostile.
Well guess what, as Jose Montoya (Infectious disease specialist - Stanford, USA) has said recently, this is old school thinking, old knowledge. There
is evidence of inflammation in ME (CFS), but it's NOT the ''outdated'' markers (for ME CFS) such as ESR/CRP which look at one type of inflammation, but a
different type of more subtle inflammation.
So yes, TH1/TH2 imbalance blood test is hardly going to alter your diagnosis,
but in combination with many others specialist tests, it
may show you just how sick you are, especially if you gather multiple results, over time.
I also tend to run a full blood count, to 'prove' I didn't have an infection at the time. And if I do, I re-run with at least an 8 week gap in between. This is because blood tests can have multiple meanings, I.E. they can be
'acute phase reactants', and can go up with a bug, when you're otherwise fine in this area. So its important to show you didn't have a bug, as then other reasons for elevation are then implied.
Maybe half of my private tests are positive, showing you can't just follow research and get it right by blind faith in a heterogenous cohort of research participants, e.g. 'CFS'. Yet, nearly all of my NHS tests are negative. My tests follow ME or CFS or Lyme research, the state tests don't are for conditions I don't have. Doctors lose hope, they get sick of you, they follow the NICE guidelines, they listen to other warning not to order tests as it's costly and wasteful.
You could say this was somewhat of a motivator for me to become interested in medical research, of which sceptics love to point out is unorthodox or unproven. Well sometimes, by listening to unorthodox people and small studies done on patients who likely have your condition, you learn a lot more than silence from an accepted system, of doing nothing is the best management policy for a chronic disease.
So that's what I do and I get solace from the fact I know I have a shared disease, even if I've never met someone with it so far. Maybe one day I will.
So don't invest in private tests, unless your committed and know what you're doing as you could have 500 tests and only 3 are positive. Also don't expect anyone to listen to you, due to the fact they aren't educated in up to date science and probably qualified years ago and what they learnt back then is out of date.
A doctor told me the other day, he didn't know what IgG meant. Another told me they don't believe it's possible to feel dizzy after passing urine as it can't possibly lower your blood pressure.
Imagine this gap of knowledge, now focussed on something as vastly complicated (and contested) as the field of immunology and then a subset of this, inflammation, and then a further subset of this, cytokines all wrapped up in a disbelieved condition.
Huge scope for over and under interpretation by the patient, due to influence from another party.
Make sure you check who is influencing you, do they sound legitimate, and what authority do they have on supporting or dismissing your results.
I have no authority, I'm just a patient. But sometimes a patient has imbibed massively more than a medical qualified sceptic, because a closed mind prevents new information being considered valid or invalid. Don't be fooled by appeals to authority, be confident the decisions you make as an adult, are you own.
The best of luck.
