Long Treatment Regimen Reaps Dividends for Irene

Long Treatment Regimen Reaps Dividends for Irene

Who Me?

Well-Known Member
I've been on a long time treatment regimen and I have had few results.

Reading all these just angers me to be honest and gives those who think we are malingerer ammunition to use against us. "Why aren't you better already".

I'm admittedly a pessimist when it comes to recoveries. If I had money and people to take care of me and doctors I could get to so all I had to do was rest and heal maybe I'd feel better

But I don't so all this does is sadden me and make me mad.

These people are the exception and not the rule and I believe give false hope.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I've been on a long time treatment regimen and I have had few results.

Reading all these just angers me to be honest and gives those who think we are malingerer ammunition to use against us. "Why aren't you better already".

I'm admittedly a pessimist when it comes to recoveries. If I had money and people to take care of me and doctors I could get to so all I had to do was rest and heal maybe I'd feel better

But I don't so all this does is sadden me and make me mad.

These people are the exception and not the rule and I believe give false hope.
I don't really get the malingerer connection but I agree that they are the exception, and perhaps that should be made clearer.

Who knows though, who will be the next exception? You, me ? Someone else. You just never know...
 

Who Me?

Well-Known Member
I don't really get the malingerer connection but I agree that they are the exception, and perhaps that should be made clearer.

Who knows though, who will be the next exception? You, me ? Someone else. You just never know...
What I know is that I don't have money, access or help to do anything that these people have done. And after 20 year, the last 5 or so being housebound, that I am treatment resistant.

Accepting that makes far more sense to me that sitting around waiting for "something' whatever that may be.

When I first go sick Ampligen was the greatest thing on the horizon. Where's that? Rituximab? Who knows with that. But even if both of those were available tomorrow, I can't pay and I have no one to rx them.

My reality is I don't expect to be an exception and I think 10 stories in a row gives false hope to newbies who need to know the reality of the disease, not the anomalies.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I strongly disagree but I will note that the blog that goes with these stories does emphasize that recovery is rare.

Even some people can't pay for a treatment is that reason not to promote it? I can't pay for any of these treatments by the way. I can't even pay for a nice load of supplements (lol).

The reality is that some people do recover and as long as that's a possibility - so long as someone can benefit - I think putting out recovery stories is a good thing. It seems wrong to me not to spread that news.

Some people are clearly going to benefit, for instance, from long antiviral regimens. Unless they know that they are a possibility they may never have that opportunity.

If 15 people try and 1 person succeeds is that worthwhile? I would guess it is....

We all have different realities.
 

Who Me?

Well-Known Member
And I disagree with you. I think more people are like me. They realize recovery is slim to nonexistent. Maybe you can have more hope because you still drive, you go camping in the sierras and compared to many of us you're still functional. Maybe you'd feel differently if you were house bound and struggled to take care of basic things. It's not about the money. It's about QAL and from what you post, yours is infinitely better than many.

But What I am really Objecting to is not a story of recovery. I object to 10 recovery stories all
At one time based on dr Lerner who is no longer with us. And all these stories pushed back posts that IMO were more important for those who aren't "recovered" whatever that means. It's a very subjective term.

I want to read about ampligen. Or Wayne's information. Not 10 touchy feely stories of "oh I feel better but poor me I can't exercise anymore".
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
And I disagree with you. I think more people are like me. They realize recovery is slim to nonexistent. Maybe you can have more hope because you still drive, you go camping in the sierras and compared to many of us you're still functional. Maybe you'd feel differently if you were house bound and struggled to take care of basic things. It's not about the money. It's about QAL and from what you post, yours is infinitely better than many.

But What I am really Objecting to is not a story of recovery. I object to 10 recovery stories all
At one time based on dr Lerner who is no longer with us. And all these stories pushed back posts that IMO were more important for those who aren't "recovered" whatever that means. It's a very subjective term.

I want to read about Ampligen. Or Wayne's information. Not 10 touchy feely stories of "oh I feel better but poor me I can't exercise anymore".
C'mon! That's not fair. These are not touchy feely stories. These are people who engaged in long antiviral regimens, some of whom were probably as sick as you are. (At least 4 were housebound.) A fifth said she lost 25 years to this illness. I'm sure the others lost their jobs because of this illness.

All of them were very, very thankful for meeting up with Dr. Lerner.

I'm sorry about flooding the widget, though; that was a mistake and I won't do that again.
 

Seven

Well-Known Member
If you read my story I sound a lot like this people. Been on antivirals for 4 years, I am full time work (only go to office some of the time) but I have family outings, I can do my groceries, travel.....
Exercise: I do walk up to a few miles and do stationary bike. BUT I am unable to do aerobic much anything (sweat and hard core like running).
I also crash from time to time. So I still have to manage energy.

The problem of being where I am at this is the 4th time I pull myself out of relapse, I am a pro to rehab myself by now. But any push can take you down. So I have a problem to call it recovered, because anything that pushes the body will bring me down. I call this functionally stable instead of recovered.

For me recover is being able to run, push your body in exercise to sweat and progress in fitness like a normal person (not go backwards on fitness). Because I want to be able to not worry about energy since I have been there 3 times. I know how fragile this state is.

Note: I think that I am in better shape cfs wise because I struggle w NK numbers, my activity is ok. So I think if I could raise the number I can be back to normal. Where the CFSers have generally low activity. My current hypothesis anyways.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
If you read my story I sound a lot like this people. Been on antivirals for 4 years, I am full time work (only go to office some of the time) but I have family outings, I can do my groceries, travel.....
Exercise: I do walk up to a few miles and do stationary bike. BUT I am unable to do aerobic much anything (sweat and hard core like running).
I also crash from time to time. So I still have to manage energy.

The problem of being where I am at this is the 4th time I pull myself out of relapse, I am a pro to rehab myself by now. But any push can take you down. So I have a problem to call it recovered, because anything that pushes the body will bring me down. I call this functionally stable instead of recovered.

For me recover is being able to run, push your body in exercise to sweat and progress in fitness like a normal person (not go backwards on fitness). Because I want to be able to not worry about energy since I have been there 3 times. I know how fragile this state is.

Note: I think that I am in better shape cfs wise because I struggle w NK numbers, my activity is ok. So I think if I could raise the number I can be back to normal. Where the CFSers have generally low activity. My current hypothesis anyways.
I'm a lot like you Seven. I can work quite a bit but hard core aerobic is a non starter. Except for the first couple of years I've always been at this levels

To clarify though, and I know this is a little confusing; these are recoverying/recovery stories - they include some people who have recovered to say, 75%, from a much lower level of functioning. The recoverying stories are meant to highlight ways people recovered significantly.
 

Onslow

Active Member
I've been on a long time treatment regimen and I have had few results.

Reading all these just angers me to be honest and gives those who think we are malingerer ammunition to use against us. "Why aren't you better already".

I'm admittedly a pessimist when it comes to recoveries. If I had money and people to take care of me and doctors I could get to so all I had to do was rest and heal maybe I'd feel better

But I don't so all this does is sadden me and make me mad.

These people are the exception and not the rule and I believe give false hope.
I disagree with you. From what I can see many people recover, and it tends to be the mind-body regimens that give the best results (because they get to the heart of the illness).


It could be that your regimen isn't the right one. Although I don't have full details of your regimen, from what I've seen it doesn't really make sense, and if I tried it I'm pretty certain I'd still have CFS. Don't get angry with that, it's just my opinion, and I'm sure you'll probably disagree.

My treatment cost me $0.

I don't really think that antivirals get to the heart of the illness. Lerner's research show that there wasn't really any significant improvement between patients on the treatment vs placebo. Other research by Strauss, Montoya and others confirms this. I'm not sure why Lerner and Montoya kept treating patients even after the disappointing results. Confirmation bias? It's a disservice to patients. Anyway, at best I think antivirals will only reduce secondary EBV symptoms. That might reduce the stress load on the body allowing it to heal. At worst it is just an expensive placebo.
 

Strike me lucky

Well-Known Member
From what I can see many people recover, and it tends to be the mind-body regimens that give the best results (because they get to the heart of the illness).
Many people????

I've heard of a few spontaneous recoveries but never heard much at all recover with mind body stuff, which is why we don't hear of cbt/get recoveries also.

Mind body is key to placebo medicine. I havent seen mind body work on the immune system, if it did they could use it on other immune disorders.
 

Onslow

Active Member
Many people????

I've heard of a few spontaneous recoveries but never heard much at all recover with mind body stuff, which is why we don't hear of cbt/get recoveries also.
How hard have you looked? You won't really hear of many stories on forums like this due to the negativity. Cort has asked me to post my story here, but so far I've balked. However if you take the time to look, you'll see an awful lot of mind-body recovery stories.

I havent seen mind body work on the immune system, if it did they could use it on other immune disorders.
Are you aware that the stress hormones are also the main immune system modulators (cortisol, ACTH, adrenaline)? Or that meditation has been shown to alter sympathetic-vagal tone (which is another significant immune modulator)? However with CFS the immune dysfunction appears to be secondary, and I think it's unlikely that it is causing the fatigue and pain.
 

Strike me lucky

Well-Known Member
Are you aware that the stress hormones are also the main immune system modulators (cortisol, ACTH, adrenaline)? Or that meditation has been shown to alter sympathetic-vagal tone (which is another significant immune modulator)? However with CFS the immune dysfunction appears to be secondary, and I think it's unlikely that it is causing the fatigue and pain.
My opinion is the opposite with immune dysfunction being closer to the mark and hpa axis dysfunction is secondary due to the chronic nature contributing to adrenal dysfunction.
 

Tammy7

Well-Known Member
I don't really think that antivirals get to the heart of the illness. Lerner's research show that there wasn't really any significant improvement between patients on the treatment vs placebo. Other research by Strauss, Montoya and others confirms this. I'm not sure why Lerner and Montoya kept treating patients even after the disappointing results. Confirmation bias? It's a disservice to patients. Anyway, at best I think antivirals will only reduce secondary EBV symptoms. That might reduce the stress load on the body allowing it to heal. At worst it is just an expensive placebo
I'm getting my life back after 20 yrs of hell.............thanks to herbal anti-virals.
 

Strike me lucky

Well-Known Member
Antivirals have definitely helped me. Its not a cure but without them i go down hill fast. Blood tests correspond with this as lymphocytes increase when off avs and is consistent with viral infections.

I think these infections reactivate due to a crapped out immune system. The longer one has cfsme the more infections are found going by dr nicolsens research, which makes sense.

I think its also possible that many have lyme type infections that are immune suppressive also. Infectious testing for chronic active infections is in the dark ages in medicine.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm getting my life back after 20 yrs of hell.............thanks to herbal anti-virals.
That's why we should always keep our eyes and ears open and not give up! Continued good luck....Keep us posted :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Many people????

I've heard of a few spontaneous recoveries but never heard much at all recover with mind body stuff, which is why we don't hear of cbt/get recoveries also.

Mind body is key to placebo medicine. I havent seen mind body work on the immune system, if it did they could use it on other immune disorders.
Actually it is true that I have more mind/body recovery stories in my files than anything else - not by a lot though - by a couple...I have about the same number of alternative health recovery stories. I don't see much on CBT/GET though in the mind/body stuff - I don't think its powerful enough.

The people who recover from this recover in all sorts of ways. I think we usually think with an illness that there's one path but that's not even true in cancer. One person with a cancer may not respond to a medicine that another person responds to quite well.
 

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