Coping with this ailment

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Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/2/2012 3:56 PM (GMT -7)   
I was just looking to get some advice on the coping side of this ordeal. I find it hard to make the adjustment to this "new" normal after living 46.5 of my 48 years without any real health issues.  All of my hobbies and spare time used to revolve around activities.  Here in MN we get to experience extremes in the seasons, thus offering many different outdoor activities.  My family enjoyed many activities all year.  At first I just tried to keep up when this all hit.  Obviously that couldn't continue, and now I am fighting just to get through each day with the constant tiredness.  My question is this.....how can you find new meaning when everything that got you excited about life has changed?  There are constant reminders of my pre illness state that I see every day....like the new road bike I purchased just before I become ill that I have yet to ride.  I see it in the garage and wonder if I'll ever get on it for the 10-12 miles rides I used to do.  Those type of things really hit me hard and tell me where I am today.  Any words in regard to this would be appreciated!

elliemay1
New Member


Date Joined Feb 2012
Total Posts : 6
   Posted 2/2/2012 10:08 PM (GMT -7)   

 I don't know what you are dealing with but I went thru some loss of hobbys like you are. You need to find some new interests. But don't give up hope on your old ones, you may be able to enjoy some of them again. Just ease  into everything & give your body time to rest. Stressing about the things you can't do anything about will make everthing worse. Good luck to you.


Chron's Cervical fusion, UCTD, rotater cuff surgery,Hysteroctomy, spyondlothsis w/stynosis, fiibro, carpal tunnel, osteo arthritus neck & back, degenerative disk desease . A 54 yr old victem of child abuse ( the first question my GI doc asked btw) I guess abuse & GI problem are common. Mom died of sclaraderma. Sorry for any misspelt words

Post Edited (elliemay1) : 2/3/2012 2:37:55 PM (GMT-7)


Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/3/2012 1:13 PM (GMT -7)   
Post viral fatigue is what my doc has dx'd me with.  I guess I need to find a balance of hope that things can get better some day, but deal with the reality of where I am at now.  Looking at what I can do versus can't is the struggle I am in....
 
Also hard to have to turn down invitations at times for functions that used to be normal to attend.  14 months into this, so maybe this is part of the grieving process.

Loopy Pig
New Member


Date Joined Aug 2003
Total Posts : 17
   Posted 2/3/2012 7:04 PM (GMT -7)   
Minnesota-

What viruses have you been diagnosed with? I had chronic fatigue for several years and got mine into remission.... and I had it VERY severely before. But I only had viral issues-- I have EBV and HHV6. I don't have Lyme or Mycloplasma pneumonia or anything like that contributing. I was able to take some very potent prescription antivirals and after 10 months, I gained FULL remission.

I went to a local doctor in Atlanta, where I live, who helped me. I had researched some studies done at Stanford on a drug called Valcyte, by Dr. Jose Montoya. Also, a doctor named Dr. Martin Lerner who lives in Birmingham, Michigan. You should look that up.

I think the best way to deal with it is to fight it. If you only have viruses, you can get your life back.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/4/2012 12:58 PM (GMT -7)   
Thank you Loopy Pig!  My tests at Mayo clinic (yes, spent 2 days there for testing) indicated EBV in my system.  I hit on 2 of the 3 markers, meaning that it is not active, but was sometime within the past year.  This makes sense I guess, over the past 10 years I have had 4-5 occasions where a flu bug would not abate for 2-3 months afterwards.  My onset was very distinct...in fact I can pinpoint the day where I came down with what seemed like the flu.  I have a follow up at mayo on March 3.  From what you are saying, trying some strong anti-virals would be a possibility?  The mayo doc said that since the virus is not active in my system, that anti virals would not be effective.  But then again, I didn't feel that they really took my seriously since no test revealed anything loud and clear.  Believe me, I want to exhaust every option before resigning myself to being like this.  Reply back when you can.  Thanks!

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 2/4/2012 7:08 PM (GMT -7)   
Minnesota, I hope you get better soon.  Since your illness is viral there is hope for you.  I have CFS & I have no virus's or bacterial infections, there is no treatment or cure.  I don't know much about the treatment for EBV but I know you can find remission with it. 
 
With CFS, I know that pacing is so important & I am sure it is the same with EBV.  Take life easier until you get some energy back & the fatigue is not so profound.  I take B12 sublingual for energy, have you had you vitamin d checked?  Low vit. D can contribute to fatigue, mine was low & I take 2000 iu's per day to get it to normal.  How is your iron?  Just make sure you have no underlying problems that can keep you down. 
 
As I said earlier, I hope you can get back some, if not all of your energy.  It is so hard to live with fatigue everyday but don't give up.  We do have to understand that we are ill & so have limitations but talk to your Dr about treatments & do all you can to pace yourself & live within your energy envelope.  I had to give up many of my activities & I have had to mourn all of them & find new things that I love to do.   I have been sick since 2005 but I live with the hope of a cure.  Recent research into CFS has opened up possibilities of treatment.  Yeah!!!! Many gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Loopy Pig
New Member


Date Joined Aug 2003
Total Posts : 17
   Posted 2/10/2012 10:49 AM (GMT -7)   
Well, I hate to say this because it sounds ridiculous, arrogant, etc., but I think the folks at Mayo are wrong about anti-virals effects on latent EBV, latent HHV6 and latent CMV. Tell them to get on their computers and do a little research into the studies done by Jose Montoya at Stanford, where Valcyte gave most people with latent EBV a big improvement in symptoms. Also, even the recent studies with Rituximab show that going after viruses on the B lympocyte, where herpes viruses (EBV, HHV6 are herpes viruses) reside, cause people to improve.

I myself had no sign of active EBV infection when I got CFIDS. I had had EBV in highschool. I developed CFIDS in my 30's, after having septic shock, and I had normal bloodwork. I felt horrible, and the only thing wrong with my bloodwork is that my indicators for PAST EBV were through the roof. I had no indication of current EBV at that time. After I took anti-virals, my numbers on my blood work for past EBV infection came down from like 3000 to 300, and lo and behold, simultaneously, I achieved remission.

Also, to the previous poster, you HAVE infections/pathogens if you have CFIDS. However, sometimes infections don't show up in bloodwork, because platelets are over-active in CFIDS and the bacteria and platelets hide in the clumpy blood. I had to be on heparin for a year before my tests for HHV6 infection showed up positive. My doctor and I couldn't figure out why if my EBV had come down, I still felt bad, so I did the heparin to find out what else was there.
Also, what have you been tested for? There are alot of pathogens - EBV, HHV6, CMV, Babesia, other parasites, Chlamydia pneumonia, mycoplasm pneumonia, Lyme disease, and like 7 or 8 other pathogens.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/10/2012 5:29 PM (GMT -7)   
Interesting to hear.  Sounds like you learned a ton with your experience.  I was tested for Lyme, the ELISA method which was negative.  For EBV here it is:  EBV EBNA AB, S.....positive.  EBV VCA IgG Ab, S.....positive. EBV VCA IgM ab, S......negative.  I didn't get a number like you did.  Sounds like I need more tests for pathogens.  My deal is somewhat like your history.  I never really felt like the mayo docs were taking me seriously because the tests didn't reveal anything clear.  They even referred me to a psychologist while I was there which told me how they felt.  Also, the word "subjective" was in my summary reports a lot.  As in making this up???? Why on earth would I chose to do that?  The curse of the invisible illness I guess.  So, i take it you had all these pathogen tests at the fibro and fatigue center? 

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 2/11/2012 4:18 PM (GMT -7)   
Re the Mayo Clinic, I am sure they have helped many people, but I had a friend whose son had cyclic vomiting every day and no doctor could figure out why. She eventually took him to Mayo and spent thousands, staying for several days with him undergoing a kazillion tests.
He was not able to attend school and was tutored at home because of this illness. It went on for years. Nearly all of the school staff and a good number of specialists thought it was psychological.
And yes, Mayo could not dx him either. A complete waste of time and money.
Finally, she took him to a lowly family practice physician, more of the holistic type. He nailed it. It was COW'S MILK allergy. Talk about missing the obvious. He stopped the dairy and never vomited again. He was able to graduate with his senior class.
Sometimes I think a good percentage of so-called top notch specialists are educated to idiocy.
Mayo Clinic has a name, but I would think twice and then again before I would go there to get a dx.

Loopy Pig
New Member


Date Joined Aug 2003
Total Posts : 17
   Posted 2/17/2012 7:21 AM (GMT -7)   
Actually, my primary doctor gave me a lot of the pathogen tests. Anyone can do them for you. F&F Center is definitely not the only way to go. I really would look into Dr. Lerner. He specializes in CFIDS caused by viruses. Regardless, you need to get moving. The longer that you have CFIDS, the harder it is to get it to improve.

Also, be aware, that when you start taking antivirals, you will feel much worse. It's called die-off, but it means that you are getting better. If you can just endure feeling worse for several months, eventually you will feel great.
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