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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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A LOT of totally incorrect/wrong information and advice given

SOC

Senior Member
Messages
7,849
Hi all, I quickly made a starter list of lab tests only so far (no clinical tests like tilt table, etc), please excuse me if I forgot anything I will add to it if I did:

HSV-1,2 IgM IgG
EBV VCA IgM IgG
EBV EA (R+D) IgM IgG
EBV EBNA IgM IgG
EBV PCR
HHV-6 IgM IgG
HHV-6 quant PCR (whole blood)
CMV IgM IgG
CMV PCR
Enterovirus Ab panel
Coxsackie Ab panel
Parvovirus Ab panel

Borrelia burgdorferi (Lyme) IgM IgG
Babesia microti IgM IgG
Anaplasma phagocytophila IgM IgG
Mycoplasma pneumoniae IgM IgG
Mycoplasma pneumoniae PCR
Chlamydophila pneumoniae IgA IgM IgG
Streptoccocus pneumoniae panel (14 serotypes)
Toxoplasma gondii IgM IgG
Helicobacter pylori IgM IgG
TB
Ova and parasite stool and smear
Comprehensive stool analysis (for yeast, etc)

IgG Subclasses panel
IgA Subclasses panel
ANA w/ titer
Cardiolipin antibodies IgA IgM IgG
CPK
RF
Natural Killer (NK) cell functional assay
Immunoglobulin E

TSH
Total and free T3 T4
Thyroid antibodies panel
24-hour cortisol, urine
24-hour aldosterone, urine
ACTH
Adrenal antibodies panel
Total and free testosterone (men)
LH
FSH
Prolactin
IGF-1, IGF-2

CBC w/ diff
CMP
ESR
Vitamin D, 25-Hydroxy
Fasting glucose


Wow! I've seen 3 different ME/CFS specialists in the 9+ years I've been ill, to say nothing of several different PCPs, a cardiologist, and a pulmonologist and I still haven't had all those tests. :)
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Just a quick note regarding your parasite tests. I read an interesting article recently entitled, Worms and Parasites (on a website selling diatomaceous earth). I found the following pretty interesting, and perhaps something to consider. Also, there's a thread on this forum about a woman who discovered she had a tapeworm. Not sure if she had tested negative for this, but my understanding is that many people who test negative for tapeworms ended up discovering they had one.
........................................................................................

"Realize that although you may not feel ill or tired, there may still be parasites within your system. Parasitic infections are masters at hiding while feeding off the human body. So, how can you tell? You can try to take a medical test, but as Dr Andersen (a leading authority on parasitic infections) has said: If you were tested by a doctor for parasites, chances are the results would come back negative. Does this mean you do not have parasites? Unfortunately, medical testing procedures only catch about 20% of the actual cases of parasites. Over a 1,000 species of parasites can live in your body and tests are available for approximately 40 to 50 types. This means, doctors are only testing for about 5% of the parasites and missing 80% of those. This brings the clinically found parasites down to 1%. Now, if I had a 1% chance of winning in the stock market, I don’t think I would invest. Only 1% of parasites are ever clinically found.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Of all the lab tests I've been able to do so far I have:

EBV infection (Focus Dx: VCA IgG 1:5120, EA (R+D) IgG >= 1:640, EBNA IgG >= 1:640)
CMV infection (Focus Dx: IgG 11.4 was 20.4 before)
HHV-6 infection (Focus Dx: IgG 1:1280)
Mycoplasma pneumoniae (IgG > 5.00)
Candida albicans overgrowth (positive stool test)
Low cortisol (24hr test)
Low-normal NK function (13 LU)
Low ferritin
Low vitamin D

There are way too many negative tests to list, everything else lab-wise so far has been negative except here are some weird things that have been going on:
  • TSH has been decreasing quickly ever since I fell ill in January (measured many times in these months, has gone from 2.0 to now 0.7. In normal people TSH shouldn't change much at all in such a short period only slowly as you age). My free and total T3 and T4 are always in the high end of lab reference range so I seem to be becoming hyperthyroid because of this disease. Maybe this is some kind of adaptive response or dysregulation due to something else or maybe because an infection is causing some kind of thyroiditis?
  • Cortisol I wish I knew before I fell ill, I want to know whether it is the disease that is causing it to be so low. It was measured twice after I fell ill in January and has just gotten lower. Also wonder if this is an adaptive response, dysregulation due to something else, or due to infection.
  • ANA was 1:40 early on in the disease when my body seemed like it was fighting everything like crazy, now is negative, probably due to a huge immune response that resulted in some autoimmunity but now has settled.
  • 24-hr Holter monitor showed 800 PVCs/day early in the disease and I knew it because my heart was going nuts literally a week after falling ill I could feel it in my chest. This lasted for a few months and went away on its own without treatment, now no more PVCs.
I'm treating it with:


Valcyte (900 mg AM + 450 mg PM/day)
Famvir (1000 mg x 2/day)
Immunovir (500 mg x 2/day)
Diflucan (200 mg/day for 6-12 weeks, then will do Nystatin after while still on Doxycycline)
Doxycycline (100 mg x 2/day for 6 months)
Hydrocortisone (5 mg/day)

I have a CBC w/ diff and CMP every two weeks. Plus I take literally so many supplements every day too many to list here, basically everything I've researched that one needs to take for methylation/folate cycle, glutathione depletion, vitamin deficiencies, mitochondrial dysfunction, hypercoagulation, immune support, anti-yeast, etc etc. you guys know the drill.

Similar to what im doing although doses are different.
I use to use nystatin but now use sacchromyce bouldarri which can also help reduce an inflammation in the gut. Instead of hydrocort i use pregnenolone. If dhea is low its worth supplementing with as it can help lower tnf and other inflammatory cytokines??
Have u seen increases in nk numbers and function with immunovir?
My thyroid as always tested normal but body temps have always been very low ie low 35s, the preg and dhea have helped abit, a short trial of t3 didnt help and increased fatigue probably due to adrenal fatigue/dysfunction, but since i have sorted my testosterone levels out my body temps have been normal 36.8c.
Thanks for posting your treatment, interesting.

cheers!!
 

aimossy

Senior Member
Messages
1,106
you can scan all the home page phoenix articles and find stuff in there and do a search on threads in the search box, can type in lipkin for example and rituximab jonathan Edwards. this brought the threads up for me im no pro though.:)
 

catly

Senior Member
Messages
284
Location
outside of NYC
leokitten
Thank you for the list.

Ema,
Thank you for your additions

While I've had a lot of those tests (mostly by my CFS md), there are still some that I'm missing. Between my CFS MD and new Integrative Medicine group, hopefully I can check off the rest while I'm in the fairly early stages of this disorder. Plus I did just send in my 23 and me sample.
 

catly

Senior Member
Messages
284
Location
outside of NYC
Also forgot to add something very important to this list of strange changes in lab results:

  • Right after falling ill I lost my appetite completely for months, eating made me nauseous and many times vomit and even the thought of food made me feel ill. Even so, every time they measured my fasting glucose in the first months of the disease it was always in the 90s-100s which is abnormal. Then after this phase and more recently my blood glucose not fasting even just two hours after eating a big meal is always in the 60s.
This disease caused a cascade of dysregulation. All of you know that TSH, thyroid hormones, cortisol, glucose, all of these are affect each other and are intimately related. For example I am pretty sure my glucose is low because cortisol became low...


I wonder what is the first domino to fall right in the beginning of this disease before I knew what was going on and got any labs?


I've often wonder the same. In my case, I had a fairly rapid progression to hypothyroidism---or at least my endo thought it was unusual for someone's TSH to go from 1.65 to 4.92 in a year, even with Hashimotos, which I also have--who knows when that started. And to add to the thyroid issues as part of my CFS workup they did a thyroid ultra sound and found a nodule which turned out to be cancer.

I also had a low positive ANA shortly after onset of initial symptoms in May of 2012, which reverted to non-detectable in June 2012, then went up to 1:320 when I crashed in May 2013. At the same time I was found to have HHV-6 antibodies (1:1280) and EBV.as well as low NK function (6).
Also been through the loss of appetite, nausea with weight loss a couple of times. Haven't had much in the way of cortisol or glucose testing through--just routine serum tests.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
If supplementing large amounts of Vit D, I would also check for Vit D receptor dysregulation which can cause the active form of Vit D, 1, 25 D to spiral upwards out of control.

To both @Ema and @Sushi I just read about the Marshall protocol for the first time. Is this considered quackery or only useful for people with Vitamin D receptor dysregulation?

As you saw I have low vitamin D and have been supplementing every day. Actually one of the very early warning signs I had years ago when my first gradual symptoms started appearing and I went to the doctor for a checkup was very low 25-OH vitamin D levels.

Since I fell ill in January this year I've had my 25-OH vitamin D tested multiple times and I even experimented once to see what would happen if I didn't supplement, it tanks if I don't take a supplement.

So I read intently to what you both wrote and went last week to get tested for both 25-hydroxy and 1,25-dihydroxy and should know this coming week.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
To both @Ema and @Sushi I just read about the Marshall protocol for the first time. Is this considered quackery or only useful for people with Vitamin D receptor dysregulation?

As you saw I have low vitamin D and have been supplementing every day. Actually one of the very early warning signs I had years ago when my first gradual symptoms started appearing and I went to the doctor for a checkup was very low 25-OH vitamin D levels.

Since I fell ill in January this year I've had my 25-OH vitamin D tested multiple times and I even experimented once to see what would happen if I didn't supplement, it tanks if I don't take a supplement.

So I read intently to what you both wrote and went last week to get tested for both 25-hydroxy and 1,25-dihydroxy and should know this coming week.

Well, we are getting into opinion, but I think many here would agree that the Marshall Protocol isn't the answer and has been outdated (sorry to those who disagree!) o_O.

I have lousy Vit D receptors but personally wouldn't try the Marshall Protocol (check his credentials). I think the Marshall Protocol may point to other things that need attention though.

Sushi
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
It does gets *'#@@;7 depressing and boring sitting/lying around doing nothing, yes.:devil::devil::devil:

I hate it.

I was very, very active, and a very busy person before I got ill.
I don't DO passive. It drives me nuts.

But it's the only way I can sometimes do something nice, or get the shopping or laundry done, or get washed.

It doesn't cost anything, (apart from loss of earnings - but I can't work anyway).

It is still your best chance of full recovery. I wish I was still in a position to be able to do it.

6 months' bed rest would have been infinitely superior to loosing the last 11 years - and knowing I won't get any better.

(but, still hoping.)

I didn't really think you'd consider it. :p I am teasing you a little bit here, please, don't take it badly!
It is the last thing anybody wants to hear, but I thought you should hear it anyway.

Do not cross it off your list. You do still have time and youth on your side.

Yeah, wish I tried it. Instead, I went to medical school! I was in the process of applying when I got sick, and engaged in full denial until hitting a wall during clinical rotations. Had I gone to bed for 6 months back in 1993, would I be well today? Gotten IVIG? Or, maybe, had I gotten antibiotic treatment for my tick bites in 1993? 20 years later is it all too late?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Yeah, wish I tried it. Instead, I went to medical school! I was in the process of applying when I got sick, and engaged in full denial until hitting a wall during clinical rotations. Had I gone to bed for 6 months back in 1993, would I be well today? Gotten IVIG? Or, maybe, had I gotten antibiotic treatment for my tick bites in 1993? 20 years later is it all too late?

Hind sight would be great, we have to make the best of the situation we are in.
Hard not to dwell on the past but sometimes i just think only if.o_O
 

beaker

ME/cfs 1986
Messages
773
Location
USA
leokitten, in your urgent need to fight and get on with doing while you have the energy... :alien:

- have you not yet considered that the best thing to do is NOTHING?

You have not reached the 3-year time-limit which seems to be at least multiple-y ancedote-ally universally accepted amongst ME communities as the time at which natural recovery is possible if you are young enough.

(I'm sure if somebody trawled forums for anecdotal evidence it would stack up into something that somebody with the right qualifications could publish as "evidence based medicine". There is no difference qualititavely between that and some of the garbage that does "GET" published. ;) )

Take to your bed for 6 months.
Don't think,
Don't research,
Don't run,
Don't walk,
Don't do anything at all, but rest and let your body recover.

I call resting "Positive Inaction".

It reminds me that I am doing something good for myself.

I know it's not what you want to hear. You are still taking the "normal" reaction to illness, which is to fight it.

The fight you have with this disease is the fight against the urge to fight it.

And you still have time to take this battle on, successfully. :thumbsup:

(I'm sorry your thread went a bit awry.)

This is known as ART ( Aggressive Rest Therapy ) and was promoted back in the 80s.

Also to note regarding recovery. Bell did a follow up study of the kids in the Lyndonville outbreak. Most of them claimed to be well and "recovered" . After further evaluation, it was discovered that they had adapted and their "normal" had changed. They were still sick. Certainly their functional capabilities of these patients had improved, but they were not really well or recovered.
Sorry I don't have a link to the paper.
 

Sing

Senior Member
Messages
1,782
Location
New England
I agree but sadly, as others have noted, access to testing is not always available. To try to access testing one has to be prepared to be ridiculed, abused, accused of drug seeking, malingering, being a hyperchondriac... and all while paying for the privilege.

Many give up on doctors having never had more than the most basic of testing done let alone the opportunity to leave no stone unturned. It is an incredibly frustrating place to be, knowing something is physically wrong but having no access to testing that might unravel the puzzle.

In my country I know of 2 doctors who would probably give me access to some of this testing. They are both in another state and have waiting lists of over a year. In fact I think one has closed their books to new patients.

Yes, and having doctors who can read and interpret the tests in a way which is relevant for us. For example, in a recent video talk by Dr. Alan Pocinki, he said he had had Sleep Specialists interpret Sleep Studies of ME/CFS patients as normal because, or when, they did not show sleep apnea or restless leg syndrome--the two main things
they look for. Yet there were gross signs of a lack of deep sleep, a normal sleep rhythm, and multiple arousals and awakenings during the night. Luckily this patient had Dr. Pocinki, who got the data himself and interpreted it, but most of us do not have an ME/CFS specialist to order tests and see that they are examined and interpreted in the ways which are appropriate for us.

This type of thing has made me despair. It is so hard to have to push for everything, and even then not be able to succeed because none of the doctors involved know enough about ME/CFS, if anything, to have a context for helpful diagnosis of even partial aspects of it, and treatment thereof.
 

Sing

Senior Member
Messages
1,782
Location
New England
L-lysine is a pretty good treatment for some of the herpes viruses if your doc won't cooperate. You can take 3000 mg for shortish periods I am told.

Sushi

Another cause of mouth sores can be a common ingredient in regular toothpaste, called, sodium lauryl sulfate. Use another health food store type without this and see if your sores diminish.
 

Sing

Senior Member
Messages
1,782
Location
New England
Also, I meant to add that while true that testing, lab work etc is perhaps the best way to start unravelling what is happening it's not always possible. Some of us either don't have that kind of money or that level of energy or clarity of mind to think through in an organised way how to approach doing something in a logical progression. They may have all three problems. Acceptance isn't easy. We look to the youngest/least ill to help lead us out of this swamp.
SD

Unfortunately there are a lot of tests which either haven't been invented yet, or if they have, are only in research use, or another rare category. Our illness is a different sort of creature, in a lot of ways. Witness how long it has taken to get a two-day exercise test for PEM--and how unavailable this is still, and still how avoided in research. Dr. Unger at the CDC thought it was too complicated or something, so didn't include it in their big study.

Another example is that of low circulating cortisol. Most cortisol testing is done for the purpose of assessing whether the adrenal gland itself is diseased or non-functional, and not for whether the HPA axis is working to stimulate the adrenal gland at appropriate times and levels. The standard quick blood test first thing in the morning may very well not show the kind of problem a lot of us have, in which there is nothing wrong with the gland itself, but rather with the lack of appropriate signalling from the hypothalmus and pituitary glands, as the day goes on.

Same problem with Sleep Studies which are aimed to pick up sleep apnea and restless leg syndrome, but which might ignore a lack of deep sleep, multiple arousals and an abnormal sleep rhythm.

The logic behind the problem with testing is as simple as this: If my right leg is broken and you only test the left leg, and then tell me I am fine, have you proven that I am fine?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Unfortunately there are a lot of tests which either haven't been invented yet, or if they have, are only in research use, or another rare category. Our illness is a different sort of creature, in a lot of ways. Witness how long it has taken to get a two-day exercise test for PEM--and how unavailable this is still, and still how avoided in research. Dr. Unger at the CDC thought it was too complicated or something, so didn't include it in their big study.

Another example is that of low circulating cortisol. Most cortisol testing is done for the purpose of assessing whether the adrenal gland itself is diseased or non-functional, and not for whether the HPA axis is working to stimulate the adrenal gland at appropriate times and levels. The standard quick blood test first thing in the morning may very well not show the kind of problem a lot of us have, in which there is nothing wrong with the gland itself, but rather with the lack of appropriate signalling from the hypothalmus and pituitary glands, as the day goes on.

Same problem with Sleep Studies which are aimed to pick up sleep apnea and restless leg syndrome, but which might ignore a lack of deep sleep, multiple arousals and an abnormal sleep rhythm.

The logic behind the problem with testing is as simple as this: If my right leg is broken and you only test the left leg, and then tell me I am fine, have you proven that I am fine?

Oh god! On the subject of testing ~ I should be a glow stick. I've been sick for so long, in the early days I'd go to a Dr in the belief that when you're physically ill this is a good idea. How wrong I was. It took me a long time to get over that belief. The road from young and naïve to old(er) and cynical.

And it's not even necessarily true that my Xray/CAT scan/MRI etc results are negative. I recently read a study inspired by the famous one with the gorilla in the basketball court. People who were the most eminent experts in the field of diagnosing tiny lesions on a scan were given scans to look at with the purpose of finding such lesions.
They were very good. Only thing is, they missed the impression of a gorilla that was placed on the scan (about 80% missed I think). It's not what they were looking for.

Have you got sleep issues? Dr.'s are more than happy to recommend a sleep study. But they don't define what the technician looks for. They will always find the case of sleep apnea (I'm betting spouses can be as accurate when available). But we and our symptoms are not on their radar.

There's so much more I could say but I'm not doing so well at the moment.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I ran across a reference recently to the "information age" we live in. The author suggested it might be more accurate to say we live in the "disinformation age". --- So true.

I also ran across an article on the dangers of chlorella for some people (apparently about 1/3 of people react very badly to it, Athene started a thread on this here on PR). --- She ended her article with this:
The world of natural medicine is vast, poorly regulated, and documented mostly by anecdote and vague claims. Be careful.