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DO I HAVE CFS? (IS THERE AUTO IMMUNE COMPONENT)?

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Chronic Fatigue Syndrome
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Posted 5/3/2011 4:46 PM (GMT -8)

To my dear friends at "Healing Well". It's been awhile since I've posted-& have posts in the "cardiology" section, as well as "Panic attacks"..'bi-polar'....& others.

 

Today-I need your help in giving me your feedback on "Chronic Fatigue Syndrome"-  OK...here's my story, as succinctly as possible.

In Dec- 2009 I came down with a really bad case of the "flu", which put me in bed--for 2 weeks!

 

Shortly thereafter, I came down with some really strange neuro muscular symptoms...muscle fasiculations, myoclonus...cramping, contractions--all over my body--from my head....(face & neck)--moving to my trunk...limbs...& feet & toes!  I got to see a neuro here in my home city of Phila.-& he gave me some basic tests..blood...MRI...& emg--all normal...But...he had no clue what it was-!

 

I finally got accepted to the Mayo Clinic...in Rochester Minnesota...& it was truly a great place--excellent, carong Drs.--nurse--techs--everyone!

 

The symptoms..(as is usually the case)-did NOT 'act up"...for the neuro at Mayo--but--from my description---had an idea...of what I was experiencing!

 

When I tell you---they went thru me..& checked me out with a fine tooth comb..I mean that! They left no stone unturned-

 

In ONE day..I had a urine analysis...thorough blood test..("paraneoplastic panel"...only given at 3 labs...in the USA)--an MRI....CT scan...& an emg....& by day's end---all results were in..& everything was normal--!

 

The IMPORTANT thing...is---at Mayo---they were looking for van "auto immune" issue..(The blood tests were for antibodies)---!

 

The bottom line is...after seeing the Mayo team--my neuros here in Philly--now--knew where to look---in the "auto immune"...area---!

 

 

The symptoms...are still with me...NOT as frequent--but--they come in "Flare ups"...(similar to what some people call "Isaacs Syndrome)--BUT....my neuros have concluded---I do have some kind of..."peripheral nerve hyperexcitability" syndrome-w an

'autoimmune'...component--!

 

OK..now...after 16 months--symptoms still there---tho not as frequent---BUT...I NOW have had...(for the past 6-7 months)--this terrible....exhausting....ever present.."fatigue"-!

 

I told the Drs---this---explained...how I feel "drained"...like someone stuck a needle in me...& drained...ALL of my energy-! They tell me ALL of my blood tests are normal..(CBC...antibodies..etc-)--tho i have never been checked for Epstein Barr--!

 

My cardiologist tells me...CFS...is a Diagnosis of exclusion---& that....before a Dr---Dx it....ALL other causes must be ruled out!  Lord only knows....I've had every test...in the book!  When I asked about being tested for "Epstein-Barr"...he said.."Rob..it's a strange thing.  Many people who are "positive"..for Epstein-Barr....do NOT have CFS--!  (I-do NOT have Fibro) 

 

Yet...there are others who DO have CFS...who test negative for "Epstein Barr"--!  So--he really did not say--& kinda implied..it could be.."depression'.. my 'not sleeping well'--like anything ..BUT....CFS--!

 

Again...my symptoms..TERRIBLE exhaustion--unrefreshing sleep---by 2 PM...feel I need a nap...&can barely keep my eyes open...after 10 PM...(most nites)--!  No energy.at all--

 

I do NOT have any swollen glands--no muscle pain..etc...(That one reads re" CFS---)--Just that HORRID..."draining exhaustion"...&fatigue--! 

 

My question to you all is---CAN CFS....be due to an "auto immune"...disorder..?  i AM going back next week..(May 10)--to Mayo Clinic...for quick "follow up-!

 

Is there ANY test...I can suggest...("Epstein-Barr"...is it worth it...?  Does a 'positive'...even mean anything...?)

 

I mean..I will be at one of the world's BEST hospitals--!

 

There should be some Dx test I can be given--!

 

So--in conclusion--I'd appreciate as many people getting back to me as possible---especially...with my question--regarding the "auto immune"...connection (Does anyone here WITH CFS--have an "auto immune"..issue...?  And...IS there ANY connection..?)-

 

I really do appreciate any feedback..you can give me!

No one like someone who HAS the disorder---(and can identify

with the symptoms)--to get back...with some feedback--!

 

Kindest regards--Robert blush

Conditions--IBS...GAD...Depression...SVT...GERD....Esophageal dismotilty..Mitral Valve prolapse

 

Meds--Valium-10mg nite   Tenormin 25 mg  Simvastatin..20..mg   Omega3--Magnesium-B-12 

Posted 5/4/2011 8:09 PM (GMT -8)
Robert, I have had every auto-immune test there is, I think.  They all have come back negative.  I have had so many symptoms that have looked like an auto-immune issue but they have all turned out to be either Fibro or CFS.  Both of these illnesses have many symptoms that look like something else.  But I have found that CFS usually doesn't stand alone, you could have one or more other illnesses as well so keep looking.  You have ana markers so you probably have something else going on as well.  All I can say is that you sure sound like you have CFS, I hope you find your answers soon.  There is nothing worse then being in limbo with a dx.

Hugs, Denise

Posted 1/25/2012 5:08 PM (GMT -8)
There are some viruses which attack the nervous system and/or travel immediately to the nervous system and eventually permanently alter or damage it.
Rotoviruses, enteroviruses, etc.
'Post-viral fatigue syndrome" is what it sounds like.
If it started in the gut, that would be my guess.
Mine also started in the gut about 30 years ago. I was able to get back up and recover, only to be hit about 15 years ago -- this time I crashed totally.
I have been dx with both fibromyalgia and CFIDS.
Until more is known about the infectious causes of CFIDS and Fibro, one can only treat symptoms.

I did test positive for high titers of EBV, but that is not the cause of CFIDS. Many, many diseases have EBV as a component. When the immune system is suppressed, latent viruses can become reactivated.
I personally suspect CFIDS and/or Fibro are caused by another infection that the body cannot totally clear, and it suppresses immune function, and this causes the reactivation of latent viruses, which complicates the picture and makes a person even sicker.

I would, however, encourage you to check your meds as side-effects are sinister and sometimes sneak up and the connection is never made by doctors!
Posted 1/26/2012 7:19 AM (GMT -8)
Wow, this sounds a lot like me.  I too went to Mayo clinic for 2 days of testing/evaluations, and have a follow up on March 2.  Same type of deal.....perfectly healthy 48 year old male feeling great both mentally and physically, then a bout with the flu late november 2011.  Unrelenting fatigue like I have never felt, weird headaches, and even the muscle twitches that you describe.  I have low testosterone levels, but not low enough to be causing all my ailments....supplementation has provided little if any relief.  I understand there are 3 tests for EBV, and I tested positive for 2 of them.....but not the one that says it is currently active in your system.  So, like you, being in this limbo land not knowing a firm dx is distressing.  So far I have told it is post viral fatigue and nothing more.  Having a docotor that understands you is crucial in all this.....I have one now but it took 6 months of having to defend myself because test results did not reveal much.  I am taking Nuvigil during the day to help w/the fatigue, you may want to try something like that, or adderall which helps some people.  For me it is a quality of life issue now...
Posted 2/11/2012 4:15 PM (GMT -8)
Hi Minnesota,
I didn't realize you are a HE and I asked you about being peri- menopausal in a different post. I'm sorry!
It makes sense that males with CFIDS would have a disturbed or abnormal hormone profile, too, though, as this illness does effect endocrine function.
Diet is extremely important with both CFIDS and Fibro. I might be bedridden today if I had not identified gluten as an issue early on.
Besides gluten in wheat, rye , barley and oats ( and spelt, etc), yeast can be an issue for many, both baker's yeast and brewer's yeast. I am both gluten and yeast free and am about to do a trial of dairy free, which I've been holding out on because I love it so much.
Dairy is an issue for many people as well-- not the lactose necessarily but the casein proteins.
Probiotics are important, good healthy proteins, vegetables, some fruit.
Healthy fats like coconut oil, flax, and so on.
Healing the gut is important in recovery as the gut is linked directly to the brain and effects everything else.
Lots of info online, so I won't ramble on.
Posted 2/11/2012 4:17 PM (GMT -8)
Hi Minnesota,
I didn't realize you are a HE and I asked you about being peri- menopausal in a different post. I'm sorry!
It makes sense that males with CFIDS would have a disturbed or abnormal hormone profile, too, though, as this illness does effect endocrine function.
Diet is extremely important with both CFIDS and Fibro. I might be bedridden today if I had not identified gluten as an issue early on.
Besides gluten in wheat, rye , barley and oats ( and spelt, etc), yeast can be an issue for many, both baker's yeast and brewer's yeast. I am both gluten and yeast free and am about to do a trial of dairy free, which I've been holding out on because I love it so much.
Dairy is an issue for many people as well-- not the lactose necessarily but the casein proteins.
Probiotics are important, good healthy proteins, vegetables, some fruit.
Healthy fats like coconut oil, flax, and so on.
Healing the gut is important in recovery as the gut is linked directly to the brain and effects everything else.
Lots of info online, so I won't ramble on.
Posted 2/11/2012 4:20 PM (GMT -8)
Sorry for the double post.
Robert, have you been checked for celiac?
Is there possibly mold in your living environment?
Gluten intolerance and celiac both can cause that kind of fatigue. Mold exposure, esp the black mold can precipitate a case of fatigue as the immune system struggles to deal with mold toxins and VOC's.
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