Are you totally convinced you have CFS?

[Neunistiva]

Some common diseases to rule out are listed on the Stanford CFS Clinic website.

https://med.stanford.edu/chronicfatiguesyndrome/faq.html

For the lists of diseases, scroll down to the "Do I have chronic fatigue syndrome" section towards the bottom of the page.

It's a bit strange that they say you have to rule out Irritable bowel syndrome before you can get ME/CFS diagnosis, when it's actually a very common comorbidity to ME/CFS. Dysautonomia as well. Isn't POTS a common part of ME/CFS?

 

[Seven7]

It looks like natural killer cells are lymphocytes. I noticed that my lymphocytes tests came back below range on two tests. Is there anything to this do you think?

Yes just That I Do not tolerate the medicine.
To raise NK - Immunovir, inosine, LDN...., Jarrows NK something.
Avoid supplements that lowers it = Fish oil.

 

[JBoneske]

Yes just That I Do not tolerate the medicine.
To raise NK - Immunovir, inosine, LDN...., Jarrows NK something.
Avoid supplements that lowers it = Fish oil.

So low lymphocytes are low NK cells?

 

[scienceshea]

Great question - as this is something that runs through my head often. I personally view CFS as a syndrome (a group of associated symptoms) and in that sense I definitely suffer from CFS, but I am still looking for a more specific/treatable diagnosis and believe there is likely something that led to developing these CFS symptoms. At this point my best guess is that it could be viral induced (I've had consistently high EBV IGG, IGM, EBNA) however none of my doctors seem interested in exploring this path.

 

[JBoneske]

Great question - as this is something that runs through my head often. I personally view CFS as a syndrome (a group of associated symptoms) and in that sense I definitely suffer from CFS, but I am still looking for a more specific/treatable diagnosis and believe there is likely something that led to developing these CFS symptoms. At this point my best guess is that it could be viral induced (I've had consistently high EBV IGG, IGM, EBNA) however none of my doctors seem interested in exploring this path.

So you have an active Epstein-Barr virus?

 

[BadBadBear]

Do you have active EBV, Also if you have high reverse T3 isn’t that some sort of hypothyroidism or autoimmune issue?

Well, I am symptomatic for EBV and all of my titers are high except EBNA. My doc says high early antigen makes me appear to be having relapses into an active EBV infection. As I understand, the diagnostic picture for EBV is never fully clear.

RT3 can happen in any illness or sickness, for ex. a heart attack will usually cause a period of high RT3. So it's not diagnostic for hypothyroid or autoimmunity.

 

[scienceshea]

So you have an active Epstein-Barr virus?

I haven't really gotten a clear answer on this - the doctor's interpretation of my results were suggestive of a recent infection rather than current since I had normal values for EBV EA, however all of my titers were increased from testing that was done a few months earlier without any significant change in my symptoms.

 

[Seven7]

So low lymphocytes are low NK cells?

Not necessarily, you have to run a lymphocyte subset test and see what is low in your case. Google it and you will see all the things that compose. I have High B cells, low T, low NK. Ratio can be ok, and still have bad inmumune system.
That is why it is important to run a subset test.

Lymphocytes include natural killer cells (which function in cell-mediated, cytotoxic innate immunity), T cells (for cell-mediated, cytotoxic adaptive immunity), and B cells (for humoral, antibody-driven adaptive immunity). They are the main type of cell found in lymph, which prompted the name "lymphocyte".

 

[pattismith]

Not necessarily, you have to run a lymphocyte subset test and see what is low in your case. Google it and you will see all the things that compose. I have High B cells, low T, low NK. Ratio can be ok, and still have bad inmumune system.
That is why it is important to run a subset test.

Lymphocytes include natural killer cells (which function in cell-mediated, cytotoxic innate immunity), T cells (for cell-mediated, cytotoxic adaptive immunity), and B cells (for humoral, antibody-driven adaptive immunity). They are the main type of cell found in lymph, which prompted the name "lymphocyte".

a lymphocytes panel includes also CD4 and CD8 (T lymphocytes)

 

[mariovitali]

I am remitting/relapsing with the course of my illness, and at times convince myself I am not sick. Especially if I go through a longer remitting period and achieve around 70% functionality (I never get 'well', just lots better at times).

Also since the course of my illness seems to be viral, I am not sure if its JUST chronic EBV throwing everything askew or is it something different? And can it really be CFS if it is JUST EBV and nothing more?

I also have dysregulated cortisol and thyroid hormones, but my thyroid numbers were perfectly normal before I got really ill. Then I got into low T3, sometimes low T4, high RT3, and normal TSH.

My illness started with high stress and a bout of shingles, and I've never really gotten well.

Did you get any medication(s) during the Shingles infection?

 

[BadBadBear]

Did you get any medication(s) during the Shingles infection?

I did, some kind of antiviral though I don't remember what. Do you think it contributed to a relapse into EBV?

 

[mariovitali]

I did, some kind of antiviral though I don't remember what. Do you think it contributed to a relapse into EBV?

If possible could you share the medications you took?

 

[BadBadBear]

If possible could you share the medications you took?

I just don't remember. All I know is I was about 3-4 days into shingles and he said I got the medicine just in time (it would not likely work if taken much later), and it was just a short course. Maybe 5-7 days. I didn't write down the med unfortunately.

ps. seems like it was one of the -cyclovirs. Just not sure which one. Maybe Valtrex.

 

[mariovitali]

Right, so i am trying to convince Researchers to look at the hypothesis that apart from the obvious triggers of ME/CFS such as EBV there are other "Liver Stressors" that can set off ME/CFS such as :

-Hemochromatosis
-Porphyria
-Wilson's Disease

The complete list of "Liver stressors" can be found here :

https://docs.google.com/spreadsheets/d/1CLtqxW0-L8f25ZXD2H6FFDVbggc73GGC8KtYNkjdUBo/edit?usp=sharing

and of course certain medications that for specific individuals may affect Liver function. So the next step was to look for such cases for Valacyclovir (Valtrex). Here is what i found :

Complicating the attribution of liver test abnormalities to valacyclovir therapy is the fact that enzyme elevations are not uncommon during the course of varicella-zoster infection (shingles) and can progress to clinically apparent hepatitis and even acute liver failure. Clinically apparent liver disease due to valacyclovir itself is rare, but isolated reports have been published.

https://livertox.nih.gov/Valacyclovir.htm


So i hypothesise that you got ME/CFS because of the Shingles infection *and* subsequent use of this medication (which obviously had to be taken). I will have to say again that this is a hypothesis that i am trying to have it evaluated by Medical professionals.

Of course It is also possible that the Liver Stressor in your case was just the Shingles infection

 

[Freespirit]

Ibs as comorbidity? In which case it exists as well as.
Or is it a symptom, exists as part of, or cause of, or is caused by same thing
Can't rule it out anyway. Drives me mad

 

[maybe some day]

I’m really curious to see who is and who is not totally convinced that they have CFS. If you aren’t 100% convinced, what else could be your possible reasons for having CFS symptoms.
I just can t let it go and try to keep finding a reason other than CFS because I want something better and understood. Can’t think of anything else to get ruled out. My dr doesn’t know what to test for anymore other than possibly dealing with depression. I let him know that depression is a symptom and not the cause.
I’d love to hear of other ideas. My last idea was requesting a test for Hepatitis C which doesn’t even match that well other than fatigue and sore muscles and joints and maybe a few other things.
I’m sure you all aren’t totally convinced you have CFS. What are your ideas and are you going to keep pursuing something else?

Yes, theres no question i have it. Pushing 30 years with it. Text book case. I stopped looking for answers a longggg time ago. There was no point in wasting energy and funds.

Ive had a handful of friends blow a ton of money finding answers and trying so many thing. I stepped back and watched. I wanted to see if needed to follow that same path. Nope. They were no better off.

I was diagnosed early on, but took longer to accept it. The turning point for me was when I knew it wasnt depression. I had the will to get better, my body wasnt capable.

 

[BadBadBear]

So i hypothesise that you got ME/CFS because of the Shingles infection *and* subsequent use of this medication (which obviously had to be taken). I will have to say again that this is a hypothesis that i am trying to have it evaluated by Medical professionals.

It is also of course possible that the Liver Stressor in your case was just the Shingles infection

I think that is as likely as any other theories that I have heard.

It would also be around the time I had a lot of family stress (my mom and dad were both dying) AND was doing low carb. All of which I have suspected messed up my cortisol.

I have wondered if just high cortisol can contribute to development of CFS, similarly to how taking corticosteriods can seem to cause it in some cases.

 

[denlander]

I’m really curious to see who is and who is not totally convinced that they have CFS. If you aren’t 100% convinced, what else could be your possible reasons for having CFS symptoms.
I just can t let it go and try to keep finding a reason other than CFS because I want something better and understood. Can’t think of anything else to get ruled out. My dr doesn’t know what to test for anymore other than possibly dealing with depression. I let him know that depression is a symptom and not the cause.
I’d love to hear of other ideas. My last idea was requesting a test for Hepatitis C which doesn’t even match that well other than fatigue and sore muscles and joints and maybe a few other things.
I’m sure you all aren’t totally convinced you have CFS. What are your ideas and are you going to keep pursuing something else?

have you doctor test the immune system and five common viruses
Natural Killer cells (NK cells)
T cells.... CD 4 and CD 8
Viruses... EBV, HHV6, CMV, Coxsackie B. and Parvovirus
( the virus tests may show prior exposure which then afflicted the immune system)
Derek Enlander MD

 

[AlwaysTired]

Yes.

 

[Seven7]

a lymphocytes panel includes also CD4 and CD8 (T lymphocytes)

This will be even more detailed. Also a another test is the citokine profile.