A great starting point for M.E. tests......

[Firestormm]

rlc thanks for going to so much trouble in your last post. Sorry I didn't pick it up earlier - don't know why I didn't but I had a lot of alerts waiting when I logged on this morning. I will go through your post and have done some of my own work on this recently and in the past: bottom line is though that whilst some published papers and opinions have been made about ranges in general and particular ones - the regulatory authorities remain unconvinced in most if not all these areas. It can be hard for a patient who is seeing a particular specialist not to realise that that doctor is following his/her own criteria. However, even if your results are above or below the official range - it doesn't always follow that the recommended treatment will lead to an improvement in the diagnosed disease or your own health. So long as patients are being made aware then that's my real concern here. Thank you once again

 

[SanDiego#1]

rlc thanks for going to so much trouble in your last post. Sorry I didn't pick it up earlier - don't know why I didn't but I had a lot of alerts waiting when I logged on this morning. I will go through your post and have done some of my own work on this recently and in the past: bottom line is though that whilst some published papers and opinions have been made about ranges in general and particular ones - the regulatory authorities remain unconvinced in most if not all these areas. It can be hard for a patient who is seeing a particular specialist not to realise that that doctor is following his/her own criteria. However, even if your results are above or below the official range - it doesn't always follow that the recommended treatment will lead to an improvement in the diagnosed disease or your own health. So long as patients are being made aware then that's my real concern here. Thank you once again

FIRE- I definitely agree with you. Also many of the Dr resent the fact that you are asking what range they use. Most say there is only one. AMA range. Depending on where they are located. US or outside. I have started asking the Lab if I go outside of the Dr. to do the testing and they give me more info on ranges. Of course the Dr. still has to treat you.

Good Post!!!

San Diego #1

 

[rlc]

Hi Firestormm, RE

thanks for going to so much trouble in your last post. Sorry I didn't pick it up earlier - don't know why I didn't but I had a lot of alerts waiting when I logged on this morning. I will go through your post and have done some of my own work on this recently and in the past: bottom line is though that whilst some published papers and opinions have been made about ranges in general and particular ones - the regulatory authorities remain unconvinced in most if not all these areas. It can be hard for a patient who is seeing a particular specialist not to realise that that doctor is following his/her own criteria. However, even if your results are above or below the official range - it doesn't always follow that the recommended treatment will lead to an improvement in the diagnosed disease or your own health. So long as patients are being made aware then that's my real concern here. Thank you once again.

Unfortunately it’s even more complicated than regulatory bodies remaining unconvinced. You would think that common sense would dictate that there would be a regulatory body that kept abreast of all modern research on lab ranges and then instructed the labs which reference ranges they had to use. But as I’m sure you will have noticed common sense isn’t that common in the medical world.

In most countries the ranges that labs use isn’t controlled by regulatory bodies, it’s up to the individual labs to decide what ranges they use. This leads to a situation where, the ranges are often different in all the different labs in the country. Some are decades behind research some are quite up to date.

Then there is the problem of there being a ridiculously long delay between things being proven by science and it becoming established medical practice. This interesting little article explains some of the reasons why on average it takes 30 years for emerging science to become established medical practice http://www.ironoverload.org/newsletters/problems.html

Then there are also the hidden motivations around money and prestige that many people are not aware of, such as universities, tenure, patents and drug companies.

If it is established that a reference range for a common illness is wrong, this can lead to a lot of people losing a lot of money and prestige. In medicine especially in the US most of the medical research is done in universities, when they do research they often can get large amounts of money from government grants, private individuals and corporations etc. The researchers get paid a lot of money for doing the research, and they are often trying to get tenure so they have a paid job for life no matter what. There are often patent involved, which stand to make the individuals with their names on the patents millions of dollars! There is also a lot of money to be made from conferences where the medical community pays large amounts of money to hear about the new research. And there are often drug companies in the background wanting the research to go a certain direction so they can sell their drugs, which they have invested many millions in inventing.

If reference ranges for common illnesses are proven to be wrong, this can mean that the previous patient cohort is corrupted so all the research is corrupted and all the prestige and the money that would have come with it has to be thrown away. This can often lead to people who are motivated by money instead of accepting the research they instead try to come up with theories that can be bogus to try and disprove the new research. This then leads to the scientific community having to do more research (which they get paid for) to try and disprove the bogus theories. A good example of this is H pylori and stomach ulcers. That took decades to get accepted as fact.

Dr Mirza seems to be a unique individual who keeps abreast with new research and then uses it in clinical practice and sees if it works, thereby bypassing the decades of scientific squabbles. There is an interesting book review by him here http://www.amazon.com/Vitamin-Physiology-Molecular-Applications-Nutrition/product-reviews/160327300X that explains how he came across Dr Holicks research into vitamin D. He says

“This is a technical book on vitamin D. Dr. Holick is a pioneer on this subject. He led the way in this field since 1990s. I came across vitamin D by pure serendipity. I realized how rudimentary was the medical knowledge on vitamin D presented in medical books. Up to this date, this new knowledge has not made it into the curricula of medical schools.

Then I came across an article that was published by Dr. Holick in The Lancet "Redefining vitamin D deficiency" in 1998.

Since then, I never looked back and this new knowledge on vitamin D changed the way I practice medicine and my patients are grateful for it.

In this book, you will learn that vitamin D is not only to enhance bone density, but it is also a vital vitamin to maintain muscle strength, mass (to prevent falls), and that vitamin D has a vital role in preventing most cancers and preventing auto-immune disorders such as type 1 diabetes, mutiple sclerosis.

A recent study on telomerase has found that vitamin D might even enhance longevity.

If you feel tired, and suffer from chronic fatigue, aches and pains, and "everything" has been checked and "normal", it is time your doctor checked 25, hydroxy vitamin D to make sure that your vitamin D is between 32-100 ng/ml and that you are taking adequate vitamin D.

This book is written for doctors, clinicians, and researchers.

Shirwan Mirza, MD”

When it comes to the CFS situation the information about out of date reference ranges and other common diseases that are not being tested for has the potential to help thousands of people and revolutionize the entire situation. However were stuck in this situation that it is not mainstream medical practice and patients would have to rely on having a helpful doctor who will test them correctly and treat them accordingly. Unfortunately many doctors don’t respond very well to being told that their medical knowledge is out of date. All I can do is put the information out there and hope people pick up on it, and it leads to some people getting helped and maybe the medical community will start to pick up on it.

You would think that the likes of CFS doctors and researchers would want to be putting this information out there, but when it comes to CFS doctors and researchers I can imagine that there is the potential for there to be a lot of resistance to it. Because it potentially means that all previous research needs to be consigned to the garbage bin, with all the money and prestige that is attached to it. People do not seem to be very aware of the money in CFS, and are under the impression that there is only a limited amount of money being provided by governments. Some people are aware of the large amounts of money some CFS doctors charge. However, most people are not aware that, there are a substantial number of patents on tests and treatments involving CFS that must be making certain people substantial amounts of money.

When someone owns a patent on a test or treatment for a disease, it can bring in millions of dollars.

I don’t have time to go into the details but I’ve been doing a bit of research. If you type google patents into google and press search and then enter the names of people, virus, treatments etc associated with CFS you find a lot of fascinating information.

Dharam V. Ablashi, scientific director of HHV6 foundation gets these results http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=2e8d2bf39f54a277&psj=1&q=Dharam+V.+Ablashi+&tbm=pts

Kenny de meirleir gets these results http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=2e8d2bf39f54a277&psj=1&q=kenny+de+meirleir&tbm=pts

A martin lerner gets these results http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=2e8d2bf39f54a277&psj=1&q=a+martin+lerner&tbm=pts

Whittemore petterson http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=2e8d2bf39f54a277&psj=1&q=whittemore+peterson&tbm=pts

Fluge O, Mella O http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=2e8d2bf39f54a277&psj=1&q=Fluge+O%2C+Mella+O+&tbm=pts

etc

If you then trace who has patents to which doctors they have contacts with, what you find is a very closely connected circle of people, who dominate the entire field of CFS especially in the US, and have been doing so for a long time, did you know for example that Annette Whittemore of XMRV and WPI fame was also jointly responsible for setting up the HHV6 Foundation? See http://www.investinme.org/Annette%20Whittemore.htm In fact a large number of CFS doctors are in one way or another connected to the HHV6 foundation.

I’m not personally accusing anyone of any impropriety, but people do need to understand that every time one of these tests or treatments for CFS is given to someone, the person or organisation with the patent on it gets money. Because so many people are desperate the amount of tests and alternative treatments that are being ordered by patients is very large. It must come to very substantial amounts of money.

So what I’m saying is, in who’s best interest is it in to show that CFS is just a collection of misdiagnosed people? Not the governments, or organisations like the CDC, NICE and the Wessely school that have pushed it as a diagnosis, it would make them look stupid, not the CFS doctors it would end their carriers, not the people with patents they would lose lots of money, not the researchers working at universities it would damage their reputations and cost them a lot of money, not the drug companies making lots of money selling anti viral’s and klonepin etc to CFS patients. When you look at it this way you can see that not many people are going to be that keen to follow up on what Dr Mirza is saying. It would effectively destroy many people’s carriers. It also raises the strong possibility that legal action could be taken against some people.

The only people who would benefit are the wrongly diagnosed CFS patents, and the insurance companies and the government departments paying out sickness benefits, hmm maybe we should be sending Dr Mirzas info to those organisations.

If as Dr Mirza says CFS is just a large collection of misdiagnosed people who are not being checked properly for other diseases or they are being missed because of out of date reference ranges. Then the supposed science behind CFS will disappear and a lot of people and organisations with patents, and university jobs etc, etc could lose a lot of money and/or prestige.

If you look at the testing done in the last XMRV study which I have written about here http://forums.phoenixrising.me/index.php?threads/a-multicenter-blinded-analysis-indicates-no-association-between-cfs-me-and-either-xmrv-or-pmlv.19420/

You see that they have not tested for the majority of the common diseases that Dr Mirza recommends testing for or make any mention of up to date reference ranges. So there is no proof that these patients didn’t have the diseases that Dr Mirza recommends testing for, so there is no proof that they have CFS. So the research is flawed and worthless.

The problem is samples from these patients have been put into a biobank that are being given to scientists to research. The 10 million dollars put up for the CFI project http://cfinitiative.org/ is being spent investigating samples from patients that it appears haven’t had common diseases that cause CFS like symptoms ruled out. Those involved in this project include top CFS Doctors. My opinion based on what Dr Mirza is saying is that this research should be scrapped and they need to start again, this will cost millions and damage the reputations of those involved, so I can imagine a reluctance to do it.

All the CFS research and all the definitions are based on cohorts that have not had common diseases ruled out, using the recommendations of Dr Mirza. So therefore it is all potentially corrupted and should be scrapped, which then leaves you in a situation of where did all the so called science behind CFS go, there isn’t any. Which will come as no surprise to the people who know that the CDC invented CFS based on virtually no research or clinical experience and that ME has nothing to do with CFS.

If you look at claims that immune anomalies are found in CFS patients, but keep in mind that the common diseases that Dr Mirza recommends should be tested for, are not being, or are being missed due to the use of out of date reference ranges. And then you do some research on if these diseases cause immune anomalies you find that many of these diseases do cause immune anomalies

Vitamin D Crucial to Activating Immune Defences Science daily http://www.sciencedaily.com/releases/2010/03/100307215534.htm

Immunomodulation by vitamin B12: augmentation of CD8+ T lymphocytes and natural killer (NK) cell activity in vitamin B12-deficient patients by methyl-B12 treatment. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1905232/

Effects of iron overload on the immune system. Walker EM Jr, Walker SM. http://www.ncbi.nlm.nih.gov/pubmed/11045759?dopt=Abstract

Deficiency of invariant natural killer T cells in coeliac disease. R H Grose, A G Cummins, and F M Thompson http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954856/

Increase in peripheral natural killer cell activity in patients with autoimmune thyroid disease. Hidaka Y, Amino N, Iwatani Y, Kaneda T, Nasu M, Mitsuda N, Tanizawa O, Miyai K. http://www.ncbi.nlm.nih.gov/pubmed/1581468

Dehydroepiandrosterone replacement in patients with Addison's disease has a bimodal effect on regulatory (CD4+CD25hi and CD4+FoxP3+) T cells Alasdair J. Coles1,*, Sara Thompson1, Amanda L. Cox1, Suzanne Curran2, Elli M. Gurnell2, V. Krishna Chatterjee2 http://onlinelibrary.wiley.com/doi/10.1002/eji.200526128/abstract

Most alarmingly of all we have been told for years that Low NK cell numbers prove that CFS is an Immune disease, it seems to be the one test that is held up as proof of the physical reality behind CFS. However low NK cells are caused by something as simple as a partial night’s sleep deprivation.

Partial night sleep deprivation reduces natural killer and cellular immune responses in humans. M Irwin, J McClintick, C Costlow, M Fortner, J White and J C Gillin http://www.fasebj.org/content/10/5/643.short

So as the majority of sick people don’t sleep well that’s that theory down the drain. Unless someone has had every disease that cause low NK cells ruled out which the science shows is large number of diseases, and have had their sleep monitored in sleep studies to make sure they have had adequate sleep, low NK results are meaningless.

I think it should be noted that the research that shows lack of sleep dramatically lowers NK cells was done in 1996, how come I can find it in 2 minutes on google scholar, and CFS experts are still giving everyone NK cell tests?

The reality is that because common diseases are not being ruled out or are being missed because of wrong reference ranges then all the cohorts used in all CFS research must be corrupted, certainly no one can prove that they are not because the cohorts haven’t been tested properly. So there is no science behind CFS. It then also leaves the question, what has been being done about ME since 1988? Basically nothing apart from pretending it is CFS.

Like I say I can’t see many of the people involved wanting to put their hands up and admit this. They have everything to lose and unless they are truly motivated by compassion, many will not want to pay the price that could come with putting what Dr Mirza say to the test. I can’t see many people being very keen to stand up and say everything I have been saying about CFS is wrong, I have missed the right diagnosis in many patients and caused them a lot of suffering, and if anyone wants their money back I will refund it.

This sadly leaves the patient population in the situation of who can they ask for help in making more extensive testing with up to date reference ranges mandatory for all CFS patients? Who has nothing to lose by making this happen, the only ones I can think of are insurance companies who I’m sure would be more than happy for people to get the right diagnosis so they don’t have to pay people, and government departments responsible for paying sickness benefits. It is possible that some sympathetic journalists may write about it to help raise awareness?

I sure some people will find this a somewhat cynical view of the situation, and some will not like me saying that in my opinion it is possible that some in this field might be motivated by money and prestige. But I find it strange that Dr Mirza’s articles have been all over the internet for the last six years, and there has been no response to them from anyone in this field that I’m aware of.

We have a doctor saying that he can always find the right diagnosis and that CFS isn’t real. And that the majority of patients can be helped. So why is no one doing anything to test what he says?

In this book review he says

http://www.amazon.com/review/R7UF8U7AM4SDZ

“I am still shocked to see people attributing chronic fatigue on the pseudo science of ME/CFS.


I do have 5700 patients in my metabolic office and I treat fatigue as #1 problem and not even once I have used CFS as a diagnostic code. CFS is not even a diagnosis. It just means you have been tired for a long time.


The clinical criteria for the diagnosis of chronic fatigue are extremely deficient on both sides of the Atlantic (USA CDC, UK Nice criteria). By implementing new reference ranges for certain vitamins, nutrients and hormones, including subtle metabolic abnormalities in glucose, mineral and lipid metabolism, including subtle pituitary-thyroid, pituitary-adrenal axes, it is absolutely impossible not to uncover the precise diagnosis of chronic fatigue in every patient.


The subtle metabolic/ endocrine/genetic/ nutritional/circadian/ auto-immune diseases I implement in systematic evaluation of chronic fatigue, usually uncovers 99.9% causes of chronic fatigue and I can prove it.


A patient with CFS is a patient who has not been thoroughly evaluated.
EBV infection and other similar viral illnesses do not cause CFS. They cause a short period of post viral fatigue for 2-3 weeks. EBV antibodies just tell you that you have "kissed" in the past and it is waste of resource and energy.”



Surly if a doctor says that they can find the right diagnosis in all supposed CFS patients, I.E millions of people could have their suffering relieved, someone somewhere should be wanting to put this to the test. Instead of constantly going over the same old ground of writing new criteria, try to imply that immune anomalies prove CFS, trying to imply that the herpes virus family are responsible despite the fact that this was proven wrong back in the 80s, etc, etc.

Glad you found the links to where Dr Mirza gets his reference ranges from useful

All the best

 

[roxie60]

EBV infection and other similar viral illnesses do not cause CFS. They cause a short period of post viral fatigue for 2-3 weeks.

I call bullshit on this statement. I was dx with severe mononucleosis in Jan 1995. It took me literally over 10 months to recover from the fatugue. I was told to stay home one week then go back to work which is what i tried to do.....i fought trying to get three days o work in a week and i was severely impaired but still tried.....

 

[SanDiego#1]

I call bullshit on this statement. I was dx with severe mononucleosis in Jan 1995. It took me literally over 10 months to recover from the fatugue. I was told to stay home one week then go back to work which is what i tried to do.....i fought trying to get three days o work in a week and i was severely impaired but still tried.....

Roxie-. I too agree with you about the viral Mono, CMV and others causing CFS. I had it and I know for a fact my becomes reactivated. I also know my last CFS Dr. took me off all all Vit D and Calcium. I have never felt worse. I am back on Vit D just from this Post. Am feeling some better. Don't know which is best to take-or Dr. to ck for correct ranges. I am not seeing CFS Dr. anymore. I also agree with some of the other research from ric on iron overload. Hemocromatosis (Iron overload) is in my family and my Father died from it. He had a long , long period of illness before it was diagnosed at a very well known Mayo Clinic. I was diag as being a carrier.
I have ordered the book on Vit D from amazon- paperback.
This is a provacative Post. I am a Health Care Professional (not a Dr. ). Plan to read book and evaluate everything. Also to take to my physician if he will look at it.

Thanks you ric and thank you Roxie. I still think there are many, many cause of CFS. We have been trying to get the name changed for years. Incidentally I became sick a year after you did. Mine started with Mono and boils in the arm pits and groin area and low grade fever . Infectious disease Dr. put me on Immune Globulin-I started getting better within 3 weeks. Not cured just better.
INTERESTING POST-AS TO RANGES IN TESTING. Do some even know what to test for?

Thank you both .

GREAT INFO>

SAN DIEGO #1

 

[rlc]

Hi Roxie, RE

I call bullshit on this statement. I was dx with severe mononucleosis in Jan 1995. It took me literally over 10 months to recover from the fatugue. I was told to stay home one week then go back to work which is what i tried to do.....i fought trying to get three days o work in a week and i was severely impaired but still tried.....

I think the point he is trying to make is that EBV infections in the overwhelming majority of people who get it is not very nice illness while you’re infected with it, this period of being infected can be protracted, it is then followed by a few weeks of Post viral fatigue. If a patient has a long period of post viral fatigue it is because they have something else going on as well, such as a Vitamin D deficiency, B12 deficiency etc.

Personally I’m constantly amazed that so many doctors can’t seem to work out that if a patient has a protracted viral infection then they are often inside not eating properly and not getting any sunlight, so they can become deficient in many vitamins and minerals, lack of things like Iodine and zinc can set of thyroid problems, people can become vitamin D deficient from lack of sunlight therefore causing protracted or sometimes permanent fatigue if something is not done about it.

My understanding of what he is saying is don’t waste time on EBV antibodies just about everybody has these, and high titers are found in perfectly healthy people, start looking for the underlying cause of why the patient is remaining fatigued and treat it and they will get better.

All the best

 

[Ema]

I don't agree. Treating my high viral titers has produced great improvement. I see high viral titers as a sign of chronic infection along with many of the top specialists.

Ema

 

[roxie60]

I seem to react strongly these days to comments from Drs that dont fit with my experience. My appologies if I misinterpreted his comment but it sounded like anyone with EBV should experience no more than 3 weeks of extended fatigue. Perhaps I misunderstand. However i will say that I was not getting very good medical care during that time. Yes I was indoors on the couch or in bed for many days a week (kinda of like now) and I was not aware if I had vit D or B12 deficiency which my intrgrative Dr dx a couple years ago but not really benefiting from the supplements especially B12 until she found MTHFR A1298C last year and got me on different B12 and other methylated B's.

 

[roxie60]

What added injury to illness is I kept telling my Dr about the fatigue and she didn't seem to care (1995).

 

[Gypsy]

roxie60

rlc

There is an EBV test that is not commonly run, but which is very helpful to know if a patient may have a persistant EBV infection. Most docs only run IgG and IgM. This goes further than that.

It is called EBV Early Antigen. You CAN have a negative IgM, but have a positive EA, and that may mean that you have a persistant infection. If I am reading correctly, 20% of people may have a positive EBV EA for a few years after an initial infection. After that, if a patient still has a positive EA several years post mononucleosis, then they MAY have an ongoing problem with EBV. It is complicated and no one, not even most ID doctors, have all the answers. Viruses are very tricky. No doubt in my mind that a severe EBV or HHV6 or CMV infection in an adult can cause lifelong problems. Read the same story a million times. "I got mono and never really got well." I think there is something MUCH more complicated going on in post-mono patients that the medical coummunity simply has not figured out yet. My opinion. Other problems still need to be addressed, i.e. B12, Vit D,thyroid, hormones, iron, so on.... and a whole lot of tests need to be run. LOTS of tests need to be run, even if EBV is thought to be the main culprit.

Some people respond to antivirals very well. Others don't. Just like with any medication.

We know that childhood chicken pox has a direct link to people getting shingles 40+ years later. And research is showing a link between EBV and MS.

But again, no one knows what long term effects a serious herpes virus infection can have on a person.
Actually...no.....we do know. We get a whole lot of people with me/cfs or atleast me/cfs symptoms.

http://labtestsonline.org/understanding/analytes/ebv/tab/test



The chart at the bottom of the page is very useful.

 

[Gypsy]

rlc

I was wondering, do you know Dr. Mirza? His comments are intriguing, but I would like to have some case histories of some of his "cfs" patients that he later diagnosed with other problems. I understand he is saying that he does not believe in cfs. I would be very interested to hear some case histories, or patient stories. Particularly, someone who developed "cfs" after mononuclosis. Or EBV/HHV6/CMV. It would be interesting to see if he is finding some common link between these patients in what he later "correctly" diagnosis them with. Also, are these patients he sees who have a cfs (misdiagnosis in his opinion) just "tired"? CFS to some people DOES mean just tired. So many doctors don't even know the pitiful CDC CFS definition, and yet they will say a patient has CFS. That is bizarre, and it means a patient has lazy doctor.

I disagree with his stance on EBV, herpes viruses and the long term effects. He and everyone else are entitled to their own opinion though.

I would still like to know, however, what he is finding in patients who had SUDDEN ONSET VIRAL "cfs symptoms". Sudden onset viral in particular. What is he finding that may provide a clue as to why these "common" infections are causing such problems for a subset of people. Beyond low Vitamin D please. I have already researched Vitamin D for years, and have been tested for years, and know the correct updated ranges

If he is saying "I CAN PROVE IT" (cfs is always a misdiagnosis) and He KNOWS how to test to find out the real cause of his patients "fatigue", then I really wish he would write a book. Or something. So patients will have access to his knowledge.We can't all hop on a plane to go to his clinic. And often if we could, many people could not afford it. I really wish he would spread his knowledge beyond his book review post and the short amount of info you reposted.

If he is an endocrinologist, (think I got that right?!) doesn't that mean that most of his patients already had some endocrine disorder? Endos have a VERY long wait time in the US, probably everywhere, some are booked up for six months, and they usually require a referral and some sort of dx. before they even see a patient. Are most of his patients people with endocrine disorders that were just not being managed properly by other doctors? Like thyroid, adrenals, diabetes, so on? And just happend to have other problems like vitamin defiencies that added to their symptoms? More questions than answers at this point

Thanks. Sorry this was so long.

rlc

Does he not believe in M.E.? Or just cfs, or cfs/me being "lumped" together?

 

[roxie60]

roxie60

rlc

There is an EBV test that is not commonly run, but which is very helpful to know if a patient may have a persistant EBV infection. Most docs only run IgG and IgM. This goes further than that.

It is called EBV Early Antigen. You CAN have a negative IgM, but have a positive EA, and that may mean that you have a persistant infection. If I am reading correctly, 20% of people may have a positive EBV EA for a few years after an initial infection. After that, if a patient still has a positive EA several years post mononucleosis, then they MAY have an ongoing problem with EBV. It is complicated and no one, not even most ID doctors, have all the answers. Viruses are very tricky. No doubt in my mind that a severe EBV or HHV6 or CMV infection in an adult can cause lifelong problems. Read the same story a million times. "I got mono and never really got well." I think there is something MUCH more complicated going on in post-mono patients that the medical coummunity simply has not figured out yet. My opinion. Other problems still need to be addressed, i.e. B12, Vit D,thyroid, hormones, iron, so on.... and a whole lot of tests need to be run. LOTS of tests need to be run, even if EBV is thought to be the main culprit.
.

I am frequently tested for EBV and mono spot to try and explain regular fatigue but told nothing to explain ongoing fatigue, all it shows is I had EBV in the past.

EBV VCA IGG AB (EPSTEIN-BARR VIRUS-VIRAL CAPSID ANTIGEN)    >3.50        Index
<0.9 Negative for IgG antibody to EBV VCA.
0.9-1.09 Equivocal. Suggest repeat testing in 10 to 14 days.
>= 1.10 Positive for IgG antibody to EBV VCA.
EBV VCA IGM AB (EPSTEIN-BARR VIRUS-VIRAL CAPSID ANTIGEN)    0.62        Index
<0.9 Negative for IgM antibodies to EBV VCA.
0.9-1.09 Equivocal. Suggest repeat testing in 10 to 14 days.
>= 1.10 Positive for IgM antibodies to EBV VCA.
EBV NUCLEAR AG    0.32        Index
<0.9 Negative for IgG antibody to EBV Nuclear Antigen.
0.9-1.09 Equivocal. Suggest repeat testing in 10 to 14 days.
>= 1.10 Positive for IgG antibody to EBNA-1.
EBV EARLY AG(EA,DIF)    0.74        ISR
<= 0.90 Negative for IgG AB to EBV-early antigen diffuse (EA-D).
0.91 to 1.09 Equivocal, suggest repeat testing.
>= 1.10 Positive for IgG Ab to EA-D.
EBV INTERP:    WHEN VCA IGM AND EA-D ARE NEGATIVE AND VCA IGG IS POSITIVE, PAST INFECTION IS INDICATED.

 

[Gypsy]

roxie60

Have you had the EBV EA? It is usually not included in the regular EBV panel. They usually just run igg, igm, one other I can't remember, and then mono spot.

I believe, most labs don't do the Early Antigen test. I could be wrong.

 

[Bluebell]

rlc's post

Just wanted to say that I appreciated the information, organization, time, and passion that went into your post.

 

[roxie60]

roxie60

Have you had the EBV EA? It is usually not included in the regular EBV panel. They usually just run igg, igm, one other I can't remember, and then mono spot.

I believe, most labs don't do the Early Antigen test. I could be wrong.

I thought it was this one at th bottom of the list of EBV tests, is this not the EA you are refering to?

EBV EARLY AG(EA,DIF) 0.74 ISR
<= 0.90 Negative for IgG AB to EBV-early antigen diffuse (EA-D).
0.91 to 1.09 Equivocal, suggest repeat testing.

 

[roxie60]

I appreciate everyone's contribution to this thread...outstanding

 

[Gypsy]

roxie60

Yes that is it. I wasn't sure if you were tested for the EA specifically. I was tested at 3 or 4 different labs before one of them ran the EA. It was positive for me...years after an initial bout with mono. Are you + for any other herpes viruses? I am always interested to hear the stories, and compare notes so to speak, with others who became ill after mono. There are SO MANY of us!

 

[roxie60]

Gypsy What kind of herpes viruses? Are these also prevalent in ME/CFS? Lupus, Parvo and Lyme have been ruled out. Although I think it interesting, this year on two separate visits to neurologist office an intern and Dr on separate occasions both asked if I had Lupus, it appears there must be some kind of facial redness that Lupus patients present. I told them the blood test was negative but then so was Celiac and that is suspected but been too ill to get biopsy. So all they will say is I have gluten sensitivity which GI test also confirmed.

 

[Firestormm]

rlc well you gone done it again Lots of effort there. You know you might like to consider a new thread that talks about reference ranges. It is a fascinating subject and crosses many of the issues that can be applied to 'the best way to test for...' 'the best test to use...' 'interpretation of test results...' etc. and all before one comes to discuss the most relevant treatment. It is hard I think for some to believe that individual doctors etc. can be interpreting results differently and recommending treatments based upon this individual interpretation. It doesn't make it right and these approaches can still result in unresolved health problems. If you do think of a separate thread - it would generate even more interesting discussion. Thanks again

 

[SanDiego#1]

Hi Roxie, RE



I think the point he is trying to make is that EBV infections in the overwhelming majority of people who get it is not very nice illness while you’re infected with it, this period of being infected can be protracted, it is then followed by a few weeks of Post viral fatigue. If a patient has a long period of post viral fatigue it is because they have something else going on as well, such as a Vitamin D deficiency, B12 deficiency etc.

Personally I’m constantly amazed that so many doctors can’t seem to work out that if a patient has a protracted viral infection then they are often inside not eating properly and not getting any sunlight, so they can become deficient in many vitamins and minerals, lack of things like Iodine and zinc can set of thyroid problems, people can become vitamin D deficient from lack of sunlight therefore causing protracted or sometimes permanent fatigue if something is not done about it.

My understanding of what he is saying is don’t waste time on EBV antibodies just about everybody has these, and high titers are found in perfectly healthy people, start looking for the underlying cause of why the patient is remaining fatigued and treat it and they will get better.

All the best

ric- You are so way off base-it hurts. No one is wasting time on EBV-there must however be retested to see what is going on . Just the Mono alone can throw everything else off-including your immune system. Of course there can be other factors. Stress alone can trigger these again..I also had CMV., OI.

Please don't put all the eggs in one basket. This is way more complicated that you seem to think. I have been to some of the best CFID Dr. None agree with each other. Some are in it for their theory to be proven right. Others are too into research and not treatment. I have 3 Dr. now working on the same thing-sometimes they miss it.
However-You are oversimplyfing a serious issue. If my Immune system had not been shut down then Immune Globulin would not have brought me almost back to normal!!!

Good Post-but wrong. Still ordered the book.

San Diego #1