Are there any success stories?

[taniaaust1]

It has also caused the death of close to 200 patients...

Rituxan (Rituximab) - Side Effect Reports to FDA

Im sure peanuts have killed more people than that.. does it mean no one should try eating peanuts. The ones who take it have severe health issues. Nuts are actually good for some people.

Yeah, it makes sense for a potentially fatal condition such as cancer, where the targeted patients are most likely already in the process of dying. I wouldn't be willing to take that sort of risk for a condition such as ME/CFS.

The sicker one is, the more risks a person is prepared to take and for some of us the ME/CFS is actually putting our lives at risk. I end up in hospital quite often due to it and Im at risk of organ failure due to it.

 

[taniaaust1]

Myself I'm a lot better than I used to be but still not anywhere near 100%. That said I've had enough success to encourage me to really get out of this, and I'm hoping that antivirals will be the holy grail for me.

That said about 15 months ago I felt that horrible It honestly was like I was dying - that was probably the worst point of it for me.

What lifted me noticeably was
1) Vitamin B12 injections (my first one I felt significantly better within an hour, but after several which seemed to stabilize my neurological symptoms now I notice no effect from them)
2) N-Acetyl Cysteine 1800mg daily (some of my neurological symptoms seemed like bipolar & OCD - that said NAC has been a miracle for me in stabilizing my mood and making me feel like I have a bit more control over myself.
3) Perhaps most significant was a course of cephalexin. I took this for sinusitis - A lot of my symptoms like static shocks, orthostatic intolerance & brain fog etc seemed to lift after about 6-7 days of this.
Supposedly the antibiotic was treating the sinusitis (which did improve a lot) but I'm still a bit suss about it - it does make me wonder if I have some other bacterial infection. I've asked doctors if sinusitis can cause that array of inflammatory symptoms like ortho intolerance & brain fog and they can't really give me a good answer.

It has been found that ME/CFS people often have a toxin producing staph in their nose and the symptoms this causes often is mistaken for sinusitis. Treating it can help some. So I theorize this is what went on with you and why that antibiotic to fix your sinusitis helped. I supposed being poisoned by the toxin this produces could even affect the autonomic system?? It certain would be able to cause inflammation and brain fog.

 

[taniaaust1]

From people with severe ME? I.e. where it has gotten to the point where they have trouble reading and writing?

It's just getting very hard to believe that I can recover from this to be honest

Thanks

I was far worst then not being able to read and write, I was probably near the worst one can get with this illness at close to the point of dying. I was going comatose for days at time (not able to wake to eat/drink), completely bedridden, unable to handle light, noise, touch or anything as I was going into like seizures. I suffered paralysis, couldn't hold my head up, had trouble feeding myself due to I'd start to shake at lifting a fork to my mouth, lost my ability to speak at times or understand language etc etc

I recovered from that and actually had a FULL remission (by improving over time, just luck I think along with aggressive rest therapy which certainly helped stopping me crashing bad again, when I started to improve slightly). I had 2-3?? years (don't know exactly how long) of remission. I only got sick again as I caught a virus and couldn't rest when sick which set this whole illness off again but nowhere near to how it was first time around..

So don't loose hope, it recovery can happen.

Others who have been wheelchair bound or bedridden and in a bad way have recovered and been able to lead almost normal lives again by taking Ampligen.

 

[2Cor.12:9]

For myself I will be trying to start Valycte in 2 weeks. I found recently found I have a high IgG to HHV6 and all the cardio markers that Lerner has associated with CFS/ME

Did you start the Valycte and has it helped? Side effects?

 

[2Cor.12:9]

From people with severe ME? I.e. where it has gotten to the point where they have trouble reading and writing?

YES!

I've been sick 29 yrs. Sick as a dog and totally bedbound for the first 2-3 years.. Husband had to do all the shopping, cleaning, schlepping the kids around, etc. I only went out for dr appts. For awhile I could barely read - I would try to watch a simple TV game show just to exercise my brain but it was too overwhelming. Made very slow improvements - one step forward 2 back - for almost 10 years. I figured after that long that I'd never get better.

Then all of a sudden after 10 yrs I made huge improvements - to about 75% - I could exercise for 15-20 min, work in the yard, travel, enjoy life. The only thing that had changed was that I worked hard at weight loss. Nothing earth shaking.

I've had lots of relapses over the years that last from a few weeks to months but they have never been nearly as bad as at it was during the early years.

Right now I'm down with a doozy of relapse for about 6 months. But even now, it's nothing like before. I can read and blog and do a few little things around the house but I'm laying down mostly. I'm confident I'll bounce back eventually though. I have to because I'm planning a trip to Africa in a few months.

Hang in there.

 

[Snookum96]

Yeah, it makes sense for a potentially fatal condition such as cancer, where the targeted patients are most likely already in the process of dying. I wouldn't be willing to take that sort of risk for a condition such as ME/CFS.

Really? I wish I had something that would kill me fast instead of sucking every little piece of life out of me, whilst at the same time doctors treated me like a second class citizen and everybody just thinks I'm tired all the time.

I'm sorry but this post made me really angry. The whole problem with the public perception of this illness is that it's not serious. You are perpetuating that myth. This illness seems to cover a wide spectrum. Ask Sophia Mirza if she would have taken that risk. Oh wait...you can't...she's dead.

 

[JPV]

I'm sorry but this post made me really angry. The whole problem with the public perception of this illness is that it's not serious. You are perpetuating that myth. This illness seems to cover a wide spectrum. Ask Sophia Mirza if she would have taken that risk. Oh wait...you can't...she's dead.

I'm well aware that many people are severely impacted by this illness. I suppose I was talking more about my individual case, which is somewhat moderate.

I also made this statement, about Rituximab, in another thread...

That being said, if someone was completely bedridden, with ME/CFS, and they fit the profile as a viable candidate for treatment, I can see why it would make sense to pursue it. Really, what do you have to lose if your life is so negatively impacted that you can't engage in even the most basic activities. I'm not that bad off so the positives outweigh the potential negatives to me, not to mention the enormous costs involved since I don't have insurance.

 

[Snookum96]

I'm well aware that many people are severely impacted by this illness. I suppose I was talking more about my individual case, which is somewhat moderate.

I also made this statement, about Rituximab, in another thread...

You don't need to be completely bedridden I don't think to make this a viable option. I'm not bedridden but I'd try damn near anything.

Thanks for replying. I tend to be a bit touchy about this stuff.

 

[Kyla]

It has also caused the death of close to 200 patients...

Rituxan (Rituximab) - Side Effect Reports to FDA

to put that in perspective, acetaminophen (tylenol) kills close to 500 people per year.
its over the counter and used without a second thought for minor aches and pains.

Any death is obviously a tragedy, but 200 amongst millions of RA and cancer patients is actually very low risk.
probably much less statistically than the risk of riding in a car.

 

[xrunner]

From people with severe ME? I.e. where it has gotten to the point where they have trouble reading and writing?

Hi @andrie
For about three years I had problems standing up for a few seconds, briefly speaking on the phone, with face to face conversations, driving, looking at a computer screen, showering etc.
The illness started almost nine years ago. After three years in a bad place, I spent another three recovering by treating pathogens mainly (Lyme and viruses).

For the past three years I've been well enough to go on long walks, exercise, drive wherever I want to, travel and holiday, play a round of golf (9-10 holes are fine whilst 18 felt a bit too much last time I played), some diy, care for parents, sustain pretty high levels of tress etc.
For the past two years I haven't needed any kind of medication or supplements to maintain my level of health and activity whilst I have kept getting stronger.
Best wishes

 

[gregh286]

Girl on facebook dr myhill group.
Bed bound for a few years and wheelchair bound thereafter for 4.5years.
Just hiked 25 miles.
Zero PEM.
All done with diet.and supplements.

 

[deleder2k]

My friend. Moderate to severe ME. Tried all supplements that exist for 10 years. After that he gave up amino acids, methylation, omega 3, lightning process, CBT, GET, he even met with a psychic. He gave up supplements, healers, doctors.

2 years after he stopped wasted money on crap he went into a remission over a period of 6 months or so. Now he works 100%, goes out partying, having sessions at the gym. He says he can do whatever he wants. It is been like this for 2 years now.


I think the problem with many of us PWME is that we try something new all the time. In that way it is easy to relate remission to a specific supplement, a new doctor, some new herbs or some other stuff. Correlation does not imply causation.

 

[gregh286]

My friend. Moderate to severe ME. Tried all supplements that exist for 10 years. After that he gave up amino acids, methylation, omega 3, lightning process, CBT, GET, he even met with a psychic. He gave up supplements, healers, doctors.

2 years after he stopped wasted money on crap he went into a remission over a period of 6 months or so. Now he works 100%, goes out partying, having sessions at the gym. He says he can do whatever he wants. It is been like this for 2 years now.


I think the problem with many of us PWME is that we try something new all the time. In that way it is easy to relate remission to a specific supplement, a new doctor, some new herbs or some other stuff. Correlation does not imply causation.

Reassuring to know that he wasnt permanently damaged.
12 years of ME and a spontaneous recovery.
Jeez.

 

[digital dog]

I like your post Deleder. Do you take anything yourself?
Would you try ritubamix if you had the money?

 

[redaxe]

Did you start the Valycte and has it helped? Side effects?

To be honest it's still too early to really tell - all the studies so far say 6 months minimum so I'm hesitant to start shouting from the rooftops just yet. And I'm starting to think I'm probably not the best person that people should use to judge the effectiveness of Valcyte from anyway.

That said based on symptoms now I'd say I'm free of ME/CFS (I think this possibly has been the case for a while) but I do seem to have a persistent level of Excessive Daytime Sleepiness and that has made it very hard to distinguish if I still have ME/CFS or not.

Excessive Daytime Sleepiness alone doesn't characterise ME/CFS but it might be some form of narcolepsy that perhaps was going on before I had the ME/CFS attack or it was triggered or made much worse since then.

I say this because I had most of the symptoms that characterise ME/CFS at one stage including PEM with OI. That seems to have largely disappeared but I'm always struggling to feel alert in the daytime. But becoming a nightowl I don't seem to have anywhere near the same issues.

I've had sleep studies (even a daytime one) and they all turned up negative so I'm thinking of seeing a neurologist who specialises in narcolepsy. It could well be something that is a co-morbid in my case which confounded things or possibly its a mild-moderate case of narcolepsy that was missed in the sleep studies. The testing for narcolepsy is still really in its infancy and there is no gold standard test as yet.

I certainly wouldn't say I have the severe symptoms of that condition but it certainly is bad enough that no amount of melatonin or waking up early in routine seems to help with things.
At the moment it's up to caffeine and modafinil to get me through the day. And if it's bad enough it seems avoiding meals when I have classes is essential as food just makes me even more drowsy.

Another concern is could it be exacerbated as a side-effect of the Valcyte. Valcyte can cause Neuropathy but my liver/kidney/blood monitoring has been good and I reguarly take NAC which may (at least I hope) protect the body from Valcyte side-effects. I'm actually taking a few days of Valcyte now as a half-way break.

 

[Mij]

To be honest it's still too early to really tell - all the studies so far say 6 months minimum so I'm hesitant to start shouting from the rooftops just yet. And I'm starting to think I'm probably not the best person that people should use to judge the effectiveness of Valcyte from anyway.

Why? What infection do you have?

 

[redaxe]

Why? What infection do you have?

The diagnosis I got from Dr Lerner was persistent HHV6 based on high IGG antibodies, very typical ME/CFS symptoms that started abruptly or soon after a flu-like illness and the holter-monitor abnormalities that he tests for. He prescribed long term Valcyte until the viral levels are reduced in the body.
That is his theory with ME/CFS that one of several viruses invades a host of long lived immune cells and neurons and releases viral proteins which sustain the ME/CFS illness. Antivirals are intended to block the viral replication long enough for the infected cells to either die or be killed off by the immune system stopping the cycle where they re-infect neighboring cells.

But to answer your question as I mentioned above my biggest problem right now is daytime tiredness and that alone isn't really a good enough measure for me to judge valcyte by. It doesn't even qualify me for having ME/CFS anymore. I'll continue the Valcyte for the time being but unfortunately I'm not in the USA so I can't consult with Dr Lerner now and as he is currently taking leave I can't expect him to answer emails either.
Unfortunately in Australia I don't think there's any doctors who do any of the treatments based on Lerner or Stanford so at the moment I'm just winging things and hoping that everything goes well.

 

[deleder2k]

I like your post Deleder. Do you take anything yourself?
Would you try ritubamix if you had the money?

I think dealing with the immune system is the only way out of this nightmare. I would not hesitate to take Rituximab.

 

[gregh286]

LDN can boost NK cell function. Rituximab action allows nk cells to be more effective against defective b cells.
Maybe ldn can help in meantime.
I would take rituximab also.

 

[2Cor.12:9]

I do seem to have a persistent level of Excessive Daytime Sleepiness and that has made it very hard to distinguish if I still have ME/CFS or not.
.

Thanks for the reply. You've probably checked this already, but is your thyroid good? I have CFS and Hashimoto's and it's really hard to distinguish which one the symptoms are coming from. But one thing was for sure. Being hypothyroid made me very sleepy all the time - like I could fall asleep anytime - once my thyroid meds were tweeked that went away and I was just left with the "other fatigue". Unless you have a doctor that's good with thyroid, the tests are often misread as normal when they really aren't. - Just a thought.