Help Deciding on Tests

[AlmostEasy]

Hello PR!

I'm extremely overwhelmed with information overload on where to go with my disorder. I've gone through so many things and in the end I'm out years of life, thousands of dollars, and I haven't recovered much, but I've learned a lot and at least ruled out a few things and discovered some clues along the way. Painstakingly slow progress as I'm sure we're all too aware.

I have a write-up of the basics of my situation here. Lots of detail.

I feel like I've narrowed it down to some sort of infection whether viral or bacterial. Everything points to neuro inflammation. I've taken every supplement I can possibly think of in terms of methylation and just basic deficiencies but the most I ever get is a baseline improvement of maybe 25% with my methylation stack and then every so often I'll have a supplement work well only to fizzle out within a day to a month time frame. Even my best supplements I unwillingly have to cycle in order to regain moderate effectiveness. Currently having minor success with CBD oil. I feel like it might be time to stop trying to fill my body up with things that should be there and start trying to remove things that shouldn't.

I think Lyme testing wouldn't be a bad idea, from IGeneX, and possibly co-infections, but I really don't notice any physical symptoms except for stiff muscles / minorly rigid gait / facial expression difficulty / eye contact issues. My hand / wrist stiffness impacted my guitar playing ability. Lyme seems to come with all the achy joints, night sweats, hot / cold, muscle pain / weakness. I have just stable / chronic mild cognitive impairment and muscle stiffness. I mean maddeningly stable.

I've also considered looking at fecal analysis / gut biome testing to look for any red flags. Are there any recommendations on this?

It's odd though because I don't have any IBS symptoms, I do get foggy / tired after eating but never abnormal gas / diarrhea / constipation / bloating / abdominal discomfort / stomach pain.

I've collected a ton of reports on people improving on short heavy cycles of Flagyl (1,2), people going into remission on Rocephin (1,2), people curing neurological symptoms of Lyme with doxycycline (1).

I have doxy, minocycline, and flagyl on hand from an online pharmacy but I don't really want to engage in this without a full frontal assault for Lyme or knowing what I'm doing with Flagyl, aka without testing to prove it might do something. I've read too many stories of people half completing their antibiotic regimens, or even fully completing them, and ending up with terrible fungal issues and the like, completely wrecking their gut biome or strengthening the pathogen.

I've got Medicaid and a Dr very willing to work with me if I provide evidence for what I want to do.

My ability to formulate a game plan has gone down a bit in the last year and I'm just having a hard time assigning things a priority value so I know which way I should go first, I'm spinning my wheels quite a bit so I thought I would reach out a bit and see if anything here rings a bell with anyone and they could help point me in the direction of where I might want to start looking.

If I got the basic Lyme panel through IGeneX (Never covered by insurance) and perhaps the co-infections at Quest Diagnostics (probably covered) and then some sort of fecal analysis, would I have a pretty comprehensive coverage of what I would want to do antibiotic wise? Any advice on which co-infections to get tested for and a respected lab for fecal testing?

I've also tested positive for EBV which I'm trialing acyclovir for (high dose; details in notes) and negative for CMV. I plan to get tested for HHV-6 and a few others as well.

Thanks!

 

[Research 1st]

Hello.

Bellow are some test's I've personally found useful for severe, chronic ME which increasingly appears to be related to people diagnosed with 'Chronic Lyme' or 'Neuro Lyme'. All of my government approved tests to rule out other conditions (except POTS) are negative, yet look at the list below and see how many are positive! This bizarre 'diagnosis of exclusion' (for CFS) is how people get a misdiagnosis of CFS and told to do CBT/GET/Pacing when they may actually have life destroying multi systemic disease and cannot prove it. We should remember that 'CFS' label can literally mean Chronic Fatigue and Four or more symptoms, but for people much more ill than this, then 'CFS' diagnosis is, without medical care and monitoring, a 'trap' if one is forced into Psychiatry, for example.

In 'CFS' Psychiatry shuns any form of testing, believing it makes somatizers worse. It does, except generally, PWCFS aren't somatizers, but actually physically ill people, with an untreated chronic illness. Anyway....

To test positive, for a whole host of dysfunctions, I've had to look outside the box and follow the experts, not government disease deniers who to this day believe ''all tests are normal''. They aren't, but they can be if you don't have ME, and 'only' have CFS of zero CFS research associated type, what people call Oxford CFS, 'Reeves Disease', etc. More stringent forms of CFS include Canadian Consensus Criteria (CCC), that is generally what people follow on this form, as it explains their illness better. However, the more severely affected generally wouldn't agree, and still this diagnostic criteria (CCC) would not explains their neurological immune illness.

CFS is a vague diagnosis. I only went down this route of testing you will see below, due to decades of testing everything else under the sun. All those years have been wasted, beleving someone would find something wrong, of course, they never did, as they doctors are trained in medical school to know what ME experts know (people like Dr Cheney, Peterson for example). For many other people, particularly newly diagnosed there are a myriad of 'cheap' tests that people can find out is the cause of their misdiagnosis of CDC CFS when they actually have an explained illness (CDC CFS is based on the idea of 'unexplained' CF) In my view, it's important to focus on these first:

I would say to know you very probably, almost certainly have ME (no one knows for sure), then RULE OUT:

*POTS - Autonomic Dysfunction with TILT test.(Some patients are lucking to 'just' have POTS, I have both).
*Investigate any cause of unexplained weight loss, gain (Malabsorption, Thyroid, Pituitary conditions, Hormones).
*Coeliac Disease and other allergies.
*Vitamin & Mineral Deficiencies (Vit D, Vit B6, Vit E) including Anaemia.
*Treatable Sleep Disorder.
*Treatable Food Allergies and or other environmental allergies that can be 'treated' by avoidance.
*Rule out heart condition (Echocardiogram, 24hr ECG, 24hr Blood Pressure Monitoring etc).

Plenty others I've forgotten....

I would check the above out first, without exception, before embarking on specialists tests, that are only positive in myself because I have been very ill for decades, and am severely ill and know before getting tested what the result will be (as I follow the research and I trust the people who know about ME and Lyme). Namely Dr De Meirleir, Dr Horowitz etc. When I say trust, I mean that I know that I've had so many tests, that it's 99.9% probable I have ME and not a missed condition.

Take a LOOK at what I've found on deciding about tests, what you asked about in your post :

Neuroinflammation Associated:

NB: Gold standard is a lumbar puncture. This is an invasive procedure and not recommended for 'speciality testing', although it would be more clinically relevent. Without that you have to use blood tests which aren' your brain, but can be associated to brain function
and infection:

VEGF
MIP-1
MCP-1
Rantes
Eotaxin
TGF-B1

Neurocognitive:

Psychoneurometric testing in hospital, or good quality clinic (not a mickey mouse clinic). To measure your predicted IQ ('thinking') IQ. In ME Lyme this tends to be lower. E.g. you can be clearly 'smart', degree level IQ, but on testing you are lower IQ than the average person due to cognitive dysfunction.

Neurological:
QEEQ. I've found a QEEG to show my brain is 'asleep' when awake. It also shows I have seizure activity proven. QEEG's are generally considered to be 'research level' and aren't used in hospitals generally. They are looking for Epilepsy and (usually) in ME CFS a standard EEG will only show that you're drowsy, not a full enough picture that a more dynamic QEEG can show.

Balance tests, such as Romberg, Tandem Romberg. (Always best to be active before this test as in ME, blood flow to the brain is worsened by upright posture, exercise and thinking). The more 'exhausted' your brain feels, the worse your balance in ME should be (not will be, should be). Remember this if booking these neurotests at 9am. 4pm is better, especially after activity when you can't think straight.

Atypical Inflammation: (E.g. NOT ESR/CRP - useless for ME CFS unless in a flair up as these are acute phase reactants and are thus often 'false positive', because you had an infection/temperature for a few days)

Cytokines/Chemokines: IL2/IL4 (TH1/TH2 response), IL-6, IL-8.
PGE2
NF-KappaB

Immune Activation:
NK Cells (Some PWME CFS have very HIGH NK cells, opposite of 'Chronic Lyme'). Also note there are more than one form of NK Cell!!! (CD56, CD57 etc). This is very important to remember when trying to find 'Low NK Cells'.
IFN-g (Inteferon Gamma).
Lymphocyte Subsets Test (NK, T, B Cells) <-- Cheaper to do it one test like this.
HLA-DR

Immune Suppression: (NB Gold standard Full blood count in ME CFS generally, won't show anything other than mildly elevated Lymphocyte count, and monocytes up) Hence we have to resort to this...

IFN-a (Interferon Alpha)
CD4/CD8 Ratio
CD3 (ME CFS tend to run low)
CD4 Killer cells
C3/C4 Complement deficiencies are associated to a form of primary immune deficiency.
Total Immunoglobulins Tests (IgG, IgM, IgA)
IgG subsets. Some PWME CFS have reduced markers which again, are associated to a form of immune supression. Conversely, some have elevetated
IgG4 which is associated to inflammation and can sometimes be associated to pancreatitis, Asthma/Pulmonary Fibrosis ec.

Intracelluar Infections: (LLT method relying on IFN-g response to infection as antibodies are usually LOW or absent in Chronic ME + Lyme).

Borrelia (Lyme)
Chlamydia Pneumonia
Chlamydia Trachomatis
Bartonella (NB: can't be had as an LTT yet).
Mycoplasmas

Viral Infection: (Serology, e.g. Antibody tests)
Parvovirus B19
EBV + EBV LTT
HHV-6, HHV-7, HHV-8

Allergy:
IgE (Mine is 20x elevated) and yes I'm allergic to practically everything (not just psychiatry...).
Mast Cell reaction (Very hard to catch as blood should be tested within 30-60 mins of a hypersensitivity reaction).

Cellular Damage:
LDH (Mine is always elevated, irrespective of good/bad days).
CK + Aldolase + Myoglobin.

Post Vaccine Defence /Natural Immunity to infection:
NB: *Not antigen tests, antibodies to the infection. If you've been vaccinated your body should 'see' and 'know' the infection!!!!

Check your vaccine record....and look for antibodies in the normal range, that you were vaccinated with. In select immune deficiencies, your body can 'forget'. Unfortunately the only way to get a diagosis is to get a booster jab, and look to see if you make antibodies. If you don't, you get a diagnosis as your body cannot defend against that class of infection, or that pathogen. Which isn't normal.....

E.g.
Check out what your body 'should' know: e.g. Pneumonococcal infections, Steptococcal, Meningococcal, Hemophillus B Influenzae.


Metabolic Dysfunction:
Prolonged time for elevated Blood Lactate AFTER exercise (Poor Lactate Clearance).
Body Core Temperature lower than 'average'.
V02 Max Exercise Testing (2 day CPET).
Lymphocyte ATP test. There are at least two ways to test this in commercial labs.

That's it...

CONCLUSION:

All you need is $100,000 and 2 litres of blood and you're set to go...or just chose the ones you think might be relevant.
Personally, I'd have no blood tests other than LTT Lyme and Chlamydia Pneumoniae and stick to Autonomic Nervous System tests and a QEEG.

Hope that helps.

All the best.

 

[AlmostEasy]

That is amazing, thank you for writing that out (if you didn't already have it in a document ready to go!).

*POTS - Autonomic Dysfunction with TILT test.(Some patients are lucking to 'just' have POTS, I have both).
*Investigate any cause of unexplained weight loss, gain (Malabsorption, Thyroid, Pituitary conditions, Hormones).
*Coeliac Disease and other allergies.
*Vitamin & Mineral Deficiencies (Vit D, Vit B6, Vit E) including Anaemia.
*Treatable Sleep Disorder.
*Treatable Food Allergies and or other environmental allergies that can be 'treated' by avoidance.
*Rule out heart condition (Echocardiogram, 24hr ECG, 24hr Blood Pressure Monitoring etc).

- I definitely don't have POTS.
- My thyroid labs are perfect, HPG axis panel perfect, testosterone is low, now on TRT but saw absolutely zero improvement in any aspect with this other than retaining and putting on muscle. You can see my #'s in my Google Doc I linked. I've wondered about "Leaky Gut" more out of desperation than belief. I tend to fog up from eating anything less than healthy.
- I don't have any immediately noticeable allergies to any foods or anything in the environment. I don't get seasonal allergies. I'm not allergic to any foods / medications that I've come into contact with.
- I'm on a pretty hardcore methylation panel with B12 / methylfolate / b-vitamins and minerals / cofactors. I should be good there. I was low in D3 (# in Google Doc) in 2012 a bit and have been supplementing ever since. Noticed zero benefit from Vit D supps.
- No one has ever reported to me of snoring / gasping for breath / stopping breathing and I've slept in rooms with others for quite a long time. Never woke up gasping for breath. My sleep quality is certainly very poor, from what I believe is just a constant overstimulated mind (glutamate/GABA imbalance?).
- Blood pressure / HR is always good, haven't had and ECG's. Body temp is chronically low. 97.0 +/- 0.5

I'll start rummaging through these tests and see which one's insurance covers. I'll probably do the IGeneX lab out of pocket and try to get those co-infections from Quest. I would very much like to get those cytokine levels measured as well, every helpful supplement has been an anti inflammatory / microglial inhibitor of some sort.

Again thanks, I'll rummage through this for a while and see what I can do. I am trying hard to stick to a game plan, it's hard when the seriousness of my problem eludes me in my debilitating fog until something reminds me of how seriously I need to come at this.

Cheers

 

[taniaaust1]

I personally wouldn't suggest antibiotics if u don't have indication of needing them for a specific thing you've been shown to have. it can take a healthy bowel 12 months to recover its bowel flora after these and u said u currently don't have any bowel issues so its best not using unless indicated or u may find yourself with new issues.

when ive taken antibiotics, I had what was being treated tested against the antibiotic first which was fortunate as it was resistant to most of them.

your case.. looking at your more detailed symptoms to isn't sounding like me to me. so I wouldn't feel right suggesting the normal me tests I usually would suggest eg tilt table test as your symptoms aren't pointing towards that needed so I suspect would come up negative. I don't know what to suggest in your case

 

[Research 1st]

That is amazing, thank you for writing that out (if you didn't already have it in a document ready to go!).

Hi, glad it helped. Yes I wrote it for you off the top of my head. I've been ill for decades so have become somewhat of a human computer, albeit a faulty one with not enough RAM. Do remember I am a patient though, not a doctor, and my tests are just a way of coping with being neglected.

You'll find on here, as we get no treatment options, we are forced to eat medical dictionaries for breakfast, to enable learning some basic knowledge what is wrong with us. So it's very much a learning experience for us all, so mistakes will be made, including by myself. (Not intentional).

Re: the Cytokine and Chemokine tests.

In terms of blood tests correlating with research they are the one's I found useful as in me at least, as they are consistently elevated and from different labs as well, over the years. When demonstrating this type of inflammation it's important to get repeated tests as:

1) Ideally you find a pattern of what form of Cytokines are elevated. E.g. if your TNF-a, low or high.
2) This way, you can disprove any counter claims of you ''must have had an infection on the day of the blood draw''. NB: To stop this claim when running any form of inflammatory marker panel, I run an FBC/CBC on the same day, usually showing a normal blood count, disproving claims I have an active infection causing an 'acute' inflammatory response, rather than a chronic inflammatory response (what you're looking for in ME CFS) with Cytokine tests.

Of note, you can also look for markers that suppress inflammation, and see if these are themselves abnormally low. An example of this is IL-10 and, IL-13.

I like using Cytokine tests, because they are quick way to demonstrate why you feel sick and infected also (ironically) to show why you might also have neuropsychiatric symptoms - cytokines and chemokines are linked to glial cell activation and low grade brain inflammation in all manner of condition ranging from CFS to Autsim. (the cells and neurons inside the tissue, not literally brain swelling on an MRI scan). Due to this, many doctors dismiss ME CFS as inflammatory as they mean ER level, gross brain tissue inflammation requiring urgent use of steroids or the patient dies from Encephalitis. We don't mean that in ME CFS. We mean neurons, even at this tiny level, abnormal, inflamed or 'exicted' neurons will have a big effect on how you feel.

And as for ''Flu like' symptoms being dismissed as needing CBT/GET to get over thinking yourself ill, well elevated periphery blood cytokines explain this better than psychiatry (even if you don't run a fever or have raised glands), never mind how they affect how your brain works deep inside. Cytokines are of course done in a blood draw, and your blood is not your brain's CSF fluid (Lumbar Puncture required for that), but levels of blood cytokines are still know to be associated to brain functioning, lung function etc. E.g IL-8 in Asthma.

I should add when discussing 'tests' I am long term sick for decades and severely affected, I also have POTS. On that basis my immune system likely won't be like yours, although it might be in some way. No one knows because we don't know what ME CFS conditions are, so we should not be tempted to 'copy' other people with the diagnosis of ME CFS believing we'll share the same test results, so keep that in mind when setting your hopes on getting abnormal results when talking to any person diagnosed with ME CFS, Chronic Lyme etc. In other words, be realistic with expectations and no you're being an exploratory scientist yourself (quite fun, except the financial outlay!).

Blood tests are always best to get from the best possible lab, in order to make them legitimate in the eyes of the doctor and because they are performed to a higher standard. With specialist tests, try and get them from a University or Hospital. Realistically, this is very hard to achieve and requires some kind of 'link' to a ME CFS doctor that few have. So a compromise is in order.

If funds are tight, then you can compromise by using a research lab for ME CFS. The tests are cheap because although theyLab is CLIA certified they don't need to be checked constantly for accreditation and thus save these costs and don't pass them onto the patient. I can only think of one Lab that is 'reliable' for ME CFS but is not a Gold Standard service - a strange phenomena. That is Redlabs in Belgium (Europe) and now Redlabs who have just set up an American wing of their Belgium lab in America.

In my opinion, as a first line way to test, this lab can be trusted because Dr De Meirleir is an ME clinician and researcher, and it's his lab effectively that's been going for decades. He is very knowledgeable on ME CFS and has produced some excellent videos on youtube to watch about ME CFS if you don't know who he is. Here is part 1 of a 20 part video series made by a euro ME CFS charity.

Having a research lab running for a long time for ME CFS, means over decades he can get 'data' on patients with ME CFS and see if there are any consistent findings, this helps make discoveries more rapid, and much cheaper when governments won't fund ME CFS research appropriately.

REDLABS do these ''cheap'' Cytokine and Chemokine panels that would otherwise costs thousands of dollars from Quest/ARUP/Focus etc. For example, some labs in the world, charge hundreds of dollars for 1 single Cytokine test - hence panel testing is more cost effective in all cases.

When you get to their website, go to ordering tests, then request form, then download the Immunity PDF test lt. It's very comprehensive. The tests I would suggest for comprehensive first stage Cytokine evaluation (along with other growth factors and chemokines associated to 'brain' dysfunction through glial cell activation and the important Interferon Gamma Cytokine, called IFN-g ) are test codes: CYTS, CYTH, CYTI.

Remember this won't get you treatment per se, but it would show if you have multiple cytokine pathways activated, that would be abnormal and depending on levels, might explain some Flu Like Symptoms and pain, symptoms that are easily dismissed by most as psychogenic as we tend to have a partial immune response (e.g no fever, sweats, vomiting, diarrhoea, but with chronic activation).

If you can't get them directly in the USA from REDLABS USA branch, if you're on the East coast you might be able to FEDEX them to Brussels (Europe) within 24hrs). Even on the West coast, you could Freeze them (if suitable).

Hope that helps.