Has anyone achieved remission or recovery from treatment by any doctor?

[nenej2015]

I've reported many times at PR my family's improvements (I don't buy there's a cure, yet).

Here is the PR activity scale for reference:

My uncle, who was about 7 on the PR activity scale, now gives every appearance of being cured. He is a very active 70-something -- dancing, playing softball, working part-time. He has no symptoms and currently takes no ME/CFS treatments. He did about 8 years of heavy-duty antivirals under an ME/CFS specialist.

My daughter was somewhere between a 4 and a 5 on the PR activity scale and heading downhill rapidly when she first saw an ME/CFS specialist. Two years of antivirals (both Valcyte and Valtrex) put her into what might be called a remission. She lives a fairly normal life. She's just finishing graduate school in engineering, is getting married next summer, travels to Europe once or twice a year and does the usual tourist stuff including plenty of walking, has been on several day-hiking vacations. She has not had a PEM episode in several years. She does not try to do competitive sports or aerobic exercise for the sake of exercise, so I couldn't say if that would result in PEM. She still takes a large number of symptomatic treatments and takes antivirals more often than not. I'd say she varies between 8 and 9 on the PR activity scale. She is not cured, but lives a fairly normal life, which is huge.

I was at a 1 on the PR activity scale when I first got antivirals from an ME/CFS specialist. That improved my condition to around 3 or 4 over the course of several years, but I was still largely housebound for another few years. I moved to another ME/CFS specialist with a broader range of treatments to see if we could tweak symptoms enough to get more functionality. Over the course of 2-3 more years we picked away at other symptoms and tried a number of additional treatments, none of which gave me the big improvement antivirals did, but each gave me another small increment of improvement. All those little increments continue to add up. Now I'm about a 7 on the PR activity scale. I work full-time at a physically easy job, and take care of myself and my house, but I can't do much else. For example, moving recently pushed me into a PEM episode (my first in more than 6 months), but it was milder than previous episodes and I recovered more quickly than previously (about 10 days).

I continue to take a lot of treatments to maintain this level of functionality. This is definitely not cured or a remission. It's keeping up with activity management and a lot of symptomatic treatments to offset the symptoms of the illness. But being able to work full-time, socialize mildly, go grocery shopping without a cart/wheelchair, and so on, is FAR better than laying in bed, unable even to read, staring out the window.

My family has benefited greatly from seeing top ME/CFS specialists. For me and my daughter, treatment from top ME/CFS specialists made the difference between having no life and something resembling normal life. It's not 100%. It requires a massive amount of determination to keep up with all the treatments. It did not happen over night. I cannot emphasize that last too much -- significant improvement did not happen over night. It took years to get where we are now. It's a long, hard haul to get significant improvement, but well worth it to have a large chunk of life back.

If you don't mind - can you post which CFS specialists you and your family members went to?

 

[SOC]

If you don't mind - can you post which CFS specialists you and your family members went to?

Since we now have some members who run down the top specialists and testing and treatments that have done my family so much good, I am no longer inclined to be entirely open about who my specialists are, what treatments I'm getting, and how I am progressing. If you're willing to tell me why you want to know, I might be willing to PM you the information.

 

[nenej2015]

Since we now have some members who run down the top specialists and testing and treatments that have done my family so much good, I am no longer inclined to be entirely open about who my specialists are, what treatments I'm getting, and how I am progressing. If you're willing to tell me why you want to know, I might be willing to PM you the information.

I completely understand I'm at a stage now where I've tried all other conventional specialists who have found nothing in my labs or scans to show why I'm still incapacitated. I've been on long term disability for 14 months now and my clock is running out in that respect because my employer won't accept the CFS diagnosis just given by my pcp and the dr who signed me off duty just said yesterday that after 14 months, she's tried all in her expertise but because I'm still incapacitated that I need to find another dr better versed in CFS. I'm in AZ and have been trying to find CFS specialists who may be better able to help me who accept new patients and ultimately who would be willing to fill out paperwork for my employer as I contine navigating this path to a hopeful return to more functioning so I can get back to my life and job. If you feel comfortable sending any info via pm as U said - I'm not sure what that is. Do u mean email? Whatever your decision - I greatly appreciate your reply and am very glad you and your family have found some measure of success in your treatments

 

[SOC]

I'm in AZ and have been trying to find CFS specialists who may be better able to help me who accept new patients and ultimately who would be willing to fill out paperwork for my employer as I contine navigating this path to a hopeful return to more functioning so I can get back to my life and job. If you feel comfortable sending any info via pm as U said - I'm not sure what that is. Do u mean email? Whatever your decision - I greatly appreciate your reply and am very glad you and your family have found some measure of success in your treatments

We have a private message system here at Phoenix Rising. I will send you a private message (PM) and you will get a red box with a number 1 in it above the word Inbox in the upper right area on your screen next to Alerts. You can click on that to get to the PM.

It is not easy to get to see a top ME/CFS specialist. Most have long waiting lists, so you'd better get on one ASAP.

 

[Jesse2233]

Well, Dr. De Meirleir say he expects his patients under 30 years old to improve 90% and his patients older than 50 years old to improve 50%.

He also say that at least 70% have great improvements with his care.

So either significant improvement exists or he is lying.

Some people doing Rituximab have achieved full recovery also.

Are Dr De Meirleir's figures an improvement above current patient baseline or a percentage of full health? @Folk

 

[Jesse2233]

Agree, A higher percentage of people recover fully within a few years, and go back to their normal lives, and you never see them in any forums. (Full recovery, when it happens, is spontaneous, with treatments for symptoms only)

@Dr.Patient this is very encouraging, do you have data on this or is it your observation?

 

[Jesse2233]

Also any data, anecdotal or emperical, on those who great treated within the first 6 months of the illness?

 

[perovyscus]

That's hard to delineate because if you've had CFS for less than six months, you're more likely to spontaneously remit.

What is likely, however, is that if EBV is causal in CFS like some suspect, then early intervention with antivirals would impart some benefit. A small pilot trial of antivirals during mono showed symptomatic improvement.

I've seen the "those people are out playing basketball" argument many times. I don't post here for year(s) at a time. I'm not playing basketball. It's equally credible to suggest these people are not able to use a computer, have passed away, or have been subjected to incremental improvement but still have profound illness. Further, while symptoms are unrelenting for me, others experience their symptoms in a more cyclical nature.

As to SOC, that's amazing. Their story is inspiring. They're also still posting.

In short, the anecdotal data squares with the actual data of 5% recovery. This is wholly unsurprising given the context of other neuroimmune illnesses, some of which have more precisely defined mechanisms of action and approved drug targets.

 

[Solstice]

Are Dr De Meirleir's figures an improvement above current patient baseline or a percentage of full health? @Folk

http://www.prohealth.com/library/showarticle.cfm?libid=19041

"The survey reported that 75% of Dr. De Meirleir’s patients surveyed have gotten better while only 1 out of 10 have gotten worse."

From a norwegian survey.

 

[IreneF]

I am getting better but I don't know why. It could be because I had to switch from Valcyte to Famvir but really I have no idea. I'm not exactly going out dancing, but I've been going to the grocery store and cooking at least half the time. I still have all my symptoms, just not as often and not always as badly, and I don't get PEM every time I do something.

So I am cautiously optimistic.

 

[Mohawk1995]

My son who is now 21 years old would say that he is completely recovered and not just improved. His improvement occured after having CFS/ME for over 5 years which started after a viral infection and was treated as Atypical Migraines for 4 of those years. During the final year prior to treatment he was diagnosed with CFS/ME by Dr Lerner (who is no longer with us) and treated (after he turned 18) with 6 cidofovir infusions over 12 weeks along with oral antivirals as well in between. At the end of the treatment there was notable improvement, however it has taken another 3 years to improve to the point where he would say he is completely recovered. He is currently a college student who works retail during the school year and has worked in a wharehouse during the summer in the heat and performing heavy work. After the initial treatment there was a notable difference in his cognitive abilities, but they were not back fully until this past fall semester. I don't want to say this treatment will help everyone. It seemed to make some sense because of the viral onset, but I am aware that amantadine (another antiviral) is being used in the treatment of post concussive syndrome which looks very much like CFS/ME. His improvement could also have been attributed in part to his age and resiliency that comes with it. For us it was truly miraculous after so many years of suffering. The reason I have joined this site is to share our experience and to hopefully encourage those suffering with this disease. I hope and pray daily that new and effective forms of treatment are developed and continue to improve over time. By linking infectious medicine, immunology, family practice and physical medicine with the latest developments in Neuroscience, I believe those changes are coming.

 

[cb2]

@IreneF how long after going on famvir did you notice you were doing a bit more with less symptoms? how much are you taking? are you still taking the famvir? thanks

 

[RU72]

Following

 

[chickpea]

Following

 

[JinZ]

Following

 

[Insomniac]

Yes, thousands of people have. The doctor is Dr. Jay Goldstein, who treated over 20,000 patients in his career. Unfortunately, he retired in 2003. This, of course, was long before the founding of PR, and the recovered patients simply went back to their lives, which is why they haven't been heard from. I have been quite ill for 16 years, yet I only found out about PR last year.

Dr Goldstein did not help me or the 2 other people I know who went to him.
I did meet a few in his clinic that he did help.

He was the first to find all sorts of symptom masking drugs and then try them all one after another, like baclosal, lamictal, gabapentin, cannabis, ketamine etc etc
So he was years ahead of doctors now in symptom treating. But there were some patients like me who tried his massive list of drugs and got little help.

It is sad that he was treated so badly by the medical profession and some patients.

 

[valentinelynx]

Dr Goldstein did not help me or the 2 other people I know who went to him.
I did meet a few in his clinic that he did help.

He helped me. I was under his care when I had my ~80% remission after 4 1/2 years of illness in 1997. Unfortunately, I relapsed in 2009. There's no one like Dr. Goldstein! Unconventional, but brilliant. It was the unconventional that led him into conflict with the California Medical Board.

 

[Locatis]

Since we now have some members who run down the top specialists and testing and treatments that have done my family so much good, I am no longer inclined to be entirely open about who my specialists are, what treatments I'm getting, and how I am progressing. If you're willing to tell me why you want to know, I might be willing to PM you the information.

@SOC Im very desesperate for help, I am severe, and may I have a reinfection of Eptein Bar, I would like to ask you to share with me the name of the doctor please, and also like to now if the treatment was something that can nnot be replicate with another doctor, thanks

 

[Centime Tara]

Good question. I don’t know of anyone who actually recovered, but have heard many reports of improvement.

 

[Giacobone]

Following