Physical damage ?

[xchocoholic]

Just wondering how many pwcs have this and what it means.

My me/cfs started out with lung congestion that wouldn't clear. I quickly progressed to having morning bladder spasms, ataxia, myoclonus, visual problems, etc.

Physical findings include left bundle branch block, lung scarring, white lesions on brain, failed rhomberg, positive ttt, etc. I never had my urinary tract system checked but I get stones.

So all this happened at once back in 1990. Is this "normal" for me/cfs ?
And what could've caused so much damage at one time that didn't kill me yet ? I actually recovered a bit after eliminating toxins from my diet after 15 years of cfs. The physical findings, except for white lesions on brain and ataxia are still

 

[xchocoholic]

sorry, my editor is hosed.

I was saying some of the physical damage is gone at least what could be seen but some is still there.

Are we the pwcs who won't recover ?

tx ... x

ps. I'm not trying to be a downer, just curious.

 

[xchocoholic]

I just realized that I haven't seen any cfs researchers comment on this. Did I miss that ?

Forgot to say that part of the reason some of my physical damage is gone is because I'm a celiac who was eating gluten for 50 years. My body was too busy fighting inflammation to heal itself.
Healing post gf diet is normal for celiacs.

But that doesn't explain why it all happened at once when I got me/cfs.

tx .. x

 

[WillowJ]

I just realized that I haven't seen any cfs researchers comment on this. Did I miss that ?

Forgot to say that part of the reason some of my physical damage is gone is because I'm a celiac who was eating gluten for 50 years. My body was too busy fighting inflammation to heal itself.
Healing post gf diet is normal for celiacs.

But that doesn't explain why it all happened at once when I got me/cfs.

tx .. x

this might help?
http://jcm.asm.org/content/48/9/3416.full

usually the infection is in early childhood, but I imagine that may not entirely rule out this happening as an adult

 

[xchocoholic]

thanks. That was specifically for celiac disease. I don't think I got celiac disease until after I'd had me/cfs for 15 years. Or at least that's when it got so bad all food went through me and it felt like I was eating glass.

What started me down this trail were all the remedies I'm seeing here for cfs.

I can't see how any of this is going to reverse damage. My lbbb is exactly the same last year as it was when discovered.
I lucked out on healing parts of the brain but I still get ataxia if I'm exposed to gluten to the damage isn't really gone.

Is there any info directly relating me/cfs damage to a virus or toxin ? Actually ms related viruses or toxins may give clues.

tx ... x

 

[xchocoholic]

ok. so i Googled viruses that cause organ damage and came up with a list. Yikes.

The urmc site had a good explanation of viruses. I'm overly positive for several viruses associated with cfs. This would explain why my cfs researcher said I would never get over cfs.
Bummer.

But why not just include this info in the definition of cfs ?

And why haven't any of my doctors suggested I try antivirals ?

I've just been trying to rebuild my immune system via diet, nutrition and rest.

Tx ... x

 

[xchocoholic]

@WillowJ

hi again. I hope I didn't sound ungrateful because that was great info you gave me.

It feels like a puzzle piece I was missing.

tc ... x

 

[WillowJ]

no worries, x.

I was answering your question which I thought was, why did my celiac get bad suddenly when I got ME? and I tied it to infection. I assumed (though of course not everyone knows everything, but it's usually better to assume people know more, than less), being a longtime member here, you would know ME and viral infections were related (in some way--most of us have an infection at time of onset, though we don't at this point know if it causes the disease or not....

there is some evidence for ongoing infection, and some evidence for an immune condition that might have been pre-existing or might be triggered by an infection which then either hides in tissues or resolves but leaves an immune/autoimmune condition behind... there is not enough evidence to know for sure... or maybe we have some patients in every category

There are some patients who have success with antiviral treatment: in Lerner and Montoya's research this seems to be people who have only one infection of EBV, CMV, or HHV-6.

There are some patients who have success with both antiviral and immune modulators: look up heapsreal's threads for an example. Also SOC.

There are some patients who try this and don't have success. We are still learning. Kogelnick is planning a trial with, among other things, rituxan and an antiviral together. (I think the other arms are rituxan alone, antiviral alone, and maybe placebo).

There's also methylation protocol (I think I've seen you over in that section of the forum maybe?) which seems to be helping for some people.

Ian Lipkin and his team are still working on research looking at past infections, molecular evidence of causes, and hopefully (no funding so far) gut dysbiosis.

There are many avenues of research and some interest from private foundations.

Stephen Holgate is looking at subgrouping and finding biomedical causes: I forgot the details but Simon wrote a front-page article here.

Griffith University in Australia and Nova University in Florida, US, are making good headway on immune markers.

Of course in Norway they are close to starting Stage III clinical trials for rituxan. Funding is proceeding well in UK for trials. And there are some plans for trials here (described above), though I think funding is sorely lacking.

So while there is no "the cure" just now and many people do remain ill and a few get worse, even now some people do get better (even long-term patients: obviously lots of short-term patients get better). And there is good reason to hope that in the future we will have a better grasp of the pathology and better treatments.

 

[xchocoholic]

@WillowJ

Thanks. I'm a newbie at medical terminology so I've been overwhelmed by all this.

My initial intro into web research was from being instructed to go on the elimination diet by my gp in 2005.

From there I learned about gluten, then leaky gut and so on.

I didn't even know what my me/cfs symptoms meant. Things like the failed rhomberg/ataxia, pem and orthostatic intolerance. I even had to watch an anatomy class in 2006. : ) So long time member but medical newbie too.

Many of those in the gf, leaky gut, and paleo world recover via diet so that was my focus. Now that that didn't work for me i see I need to move on.

Diet did help me but I got confused by how viruses were involved. Ok that hurt my head just trying to say it. I'll be reading up more on these. thanks.