Is it post viral? CFS? CFIDS?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 1/16/2012 4:30 PM (GMT -7)   
I am new to the forum, and am glad to be here....lots of great information from what I see.  I will be brief.  I came down with a virus back in November of 2011 and have not felt the same. Like most of you, I have been through so many tests/evaluations, etc. Prior to this virus I was on top of the world...work going great, coaching my daughters soccer team, on city council, and running 10k races as fast as I did 15 years ago (am 48 now).  Then the hammer hit.  My virus was mild...or so I thought.  Mild temp, some body aches, etc.  But after 6 weeks of no changes, I started the doctor process.  Blood tests all normal.  I continued on... but felt very different in regard to balance, brain fog, and unrelenting fatigue.  My usual 4 mile runs crushed me, and took days to recover.  I had a balance evaluation, and I failed...but the ears/eyes were fine.  Had lower testosterone levels, so docotor suspected that, and put me on supplementation 4 months ago.  I am 14 months into this and really nothing has improved except some periods of feeling SLIGHTLY better.  The episodes of nausea I have had with this are getting worse as well....getting a colonoscpy this friday.  My question....something has happened to me to wipe me down from functioning so highly to now this (60% former self).  Could crohns be behind this?  Or just pure CFS given the onset?  So frustrating to try to explain this malady to people when I don't understand it.  Cutting back my work schedule as well as I cannot fight on like this.  Thanks to all for listening.

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 1/18/2012 8:50 PM (GMT -7)   
Greetings and welcome form a former Minnesotan!
I am actually new to this forum also, have been posting to the Fibromyalgia forum.
I have symptoms of both CFIDS and Fibro and have been diagnosed with both.

None of us understand this illness, so you are not alone.
I crashed 15 years ago, but I think I already had it 15 years before that.
The only thing that has helped me is Olive Leaf Extract.
I used the Gaia brand (liquid capsules) for about 3 months.
Three weeks into it I really noticed some things improving.
Now I'm using something else. When I go off, I seem to deteriorate within 24 hours.

Olive Leaf is known to be a natural anti-viral, anti-parasitical, anti-bacterial, anti-fungal.

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 1/18/2012 8:51 PM (GMT -7)   
Ummm ... that should be "from" a former Minnesotan!

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/21/2012 3:48 PM (GMT -7)   
Hi Mn neighbor - I'm in led :)
anyhow..have they tested you for Auto-immune (ANA test)?! Bc that sounds just like me 7 yrs ago & I tested positive for EBV too but u see where it's led.
Angelina.
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/21/2012 3:49 PM (GMT -7)   
Um..that was supposed to say North Dakota - not sure what happened! :)
Angelina.
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 1/21/2012 4:58 PM (GMT -7)   
Thank you for the responses...great to hear.  In regard to ND, did your deal start with a viral illness?  And how are you doing now?  My doc wants to get a sed rate soon...Which I hear is a test to get.  IS that right?
 
Bret

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 1/21/2012 5:02 PM (GMT -7)   
Also, my doc (who is alternative) mentioned boosting my hormone levels as they are all low normal.  Curious if anyone has had success with that route.  Dealing with doctors with this condition is so frustrating, but I finally fell I have one that understands and is looking for quality of life imrprovements. 

Shewolfdc
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/22/2012 6:00 AM (GMT -7)   
Read the book Chronic Fatigue Syndrome: A Novel A tedby Caroline T Anderson. Not only is it a great read but it is a great way to understand the current thinking on what might cause CFS and why little has been do to treat it. I have given it to family members and friends. If you have CFS it isa must read. You get it on amazon.com One reviewer there says it should be required reading for all Americans

Shewolfdc
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/22/2012 6:01 AM (GMT -7)   
Read the book Chronic Fatigue Syndrome: A Novel A tedby Caroline T Anderson. Not only is it a great read but it is a great way to understand the current thinking on what might cause CFS and why little has been do to treat it. I have given it to family members and friends. If you have CFS it isa must read. You get it on amazon.com One reviewer there says it should be required reading for all Americans

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/22/2012 4:35 PM (GMT -7)   
Mn- yes, mine did start with positive EpsteinBarre Virus after a difficult pregnancy. Sed rate good place to start but prob will need more - if anything like mine alot more! But u never know - have a positive attitude & remember to smile :)
Angelina.
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

Bach
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/22/2012 10:38 PM (GMT -7)   
Hi,
I noticed we are the exact same sex/age -- my me/cfs began around 2000 with Epstein Barre (chronic reactivated ... sore throat, not much else at the time).

FF to 2006 and I was extremely active, working/playing as ALWAYS when *BAM*, I was down, completely handicapped.------ I've been 'walk a little/ power wheelchair mostly outside' ever since .... active life went to hell. It's not back.

I go to Hunter Hopkins in Charlotte, NC.

More later..... Take care.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 1/23/2012 6:05 PM (GMT -7)   
Has anyone had hormone supplementation to help wtih CFS?  That seems to be something to consider from what my doc said...to see if it brings any energy back.  Like most of you, I find myself craving the energy levels I had pre-illness.  All of this brings a person down to a very basic level....just getting through the day and being in more of a survival mode.  I am 48 but feel like I am 68.  And to think what I could do before in my day. 
 
It is very good to know others are out there dealing with these issues.  Bach, I am curious how you relapsed....another round of EBV?  Did you ever try any anti viral meds by chance?  I feel I owe it to myself and my family to seek out any medical avenues before just accepting this for a long long time....
 
Thanks again to everyone for the comments!!!
 
Minnesota

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 1/24/2012 8:49 AM (GMT -7)   
I am 58 and feel some days like 88.
Lately, though, after many years, I seem to have more energy.
At least the crashing fatigue is not a problem these days.

What did I do? The only thing I was doing different was the OLE, but I'm not sure if that was what eliminated the crashing fatigue.

I still have crashes after exercising too much. Like the other day ... I remembered how I used to be able to dance in my living room for exercise. (Yah, just creative movements, nothing exotic.) I thought, "why not? I feel good today." So I got to hopping around and leaping and raising my arms and twisting.
The next day, I had a bit of pain and aching and soreness -- that night felt feverish, aching head and eyes, the old symptoms coming back -- but not nearly -- not even close -- as bad a what I've had in the past. (In the past, I would have been laid out like death.)
Then the day after that, it was more achiness and pain, especially knees, tinnitus screeching louder than ever, pre-migraine. I took an Advil, and an anti-histamine before bed, and it pretty much resolved after two nights of sleep (and night sweats).

So, I want to say that OLE is worth a try if you haven't tried it. It takes a few weeks to kick in, so don't give up.
I think it's helped my immune system to hold the EBV in check.

My personal theory is that there is another organism involved in CFIDS and it isn't EBV alone that causes it. Check out the excerpt on the cause of Burkitt lymphoma:

"EBV is a ubiquitous virus that establishes a lifelong persistence following primary infection. How EBV affects its host hinges on a balance between viral latency, viral replication, and host immune responses. Generally harmless in almost every host and rarely a cause of disease, reactivation of EBV has been causally associated with various cancers. Acute malaria infection is known to increase the level of circulating EBV, but the precise mechanisms through which this virus reactivation occurs had been previously unknown.

"Now, Arnaud Chene and colleagues have identified CIDRla as the first microbial protein able to spur a latently EBV-infected cell into active production. Their results suggest that P. falciparum-derived proteins can lead to a direct reactivation of EBV during acute malaria infection, increasing the risk of Burkitt lymphoma development for children living in malaria-endemic areas."

http://www.sciencedaily.com/releases/2007/06/070607223707.htm

In the case above, it is the malaria that causes or allows the EBV to reactivate.
I think what CFIDS researchers need to be looking into is what organism are we infected with that allows the EBV to reactivate?
This is the ANSWER. (My opinion.)
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 10, 2017 9:17 PM (GMT -7)
There are a total of 2,903,846 posts in 318,690 threads.
View Active Threads


Who's Online
This forum has 158101 registered members. Please welcome our newest member, mudwoman.
298 Guest(s), 7 Registered Member(s) are currently online.  Details
PeteZa, Cassi84, notsosicklygirl, astroman, Anjne, garyi, B99