Throwin up White Flag on Rituxan Also! :(

[Esther12]

Ester I honestly don't know where they took what I wrote and concluded that I was BLAMING anyone!! Yes there were some miscommunications in the beginning but I don't blame anyone for my experience... I knew it was a crap shoot... I was just simply stating how I arrived at the point I did after a lot of soul searching... and then all the sudden I am going against the better good of our illness, blaming my doctor, etc etc... omg... I finally made the decision to answer a lot of inquiries and didn't realize the backlash involved. My ONLY regret is the money in all honesty....but what's done is done and its time to move on.

The 'blaming' thing just seemed like a little confusion to me. I didn't think anyone was really being aggressive about it. Also, people can have different views about what behaviour is best. I think i's fine for others to give their opinion, and for you to stand up for yours. Personally, I think it's really important that we don't only hear from those gaining positive results - otherwise we'd get a really distorted view of things.

These just seem like really little, normal disagreements to me. I can understand that you might be feeling really emotionally involved in it all, and that this could be a sensitive subject at the moment, but it's pretty normal for there to be some differences of opinion about things during a discussion on a forum. It's pretty normal for internet arguments to rapidly get really heated, and I've not seen that here.

Sorry to hear about your troubles, and I hope things start to improve for you soon.

 

[IreneF]

Jacque, you sound like someone who is going to benefit from the new health insurance law. Problem is, you never know what's covered and what isn't. The billing is so flaky. Plus I got a bill for my husband's knee surgery eleven months after he had it!

 

[Jacque]

Ya I know Irene I am not knowing what to expect... My Insurance carrier left Blue Cross so I had to get a Cobra policy and it was almost $900 a month...and the crazy thing is I could pay for IT and all of my blood work, infusion fees, etc...If I can prove I am uninsured for 6 mo, there is a policy now that cannot deny you for pre-existing conditions.... So stay tuned...I have few months to go bf I apply! Scarey to be without it in our condition....

 

[heapsreal]

I do. You have no idea. Sorry.

lucky its a free world. i dont understand the point of these forums if we dont share our experiences. there would be very few posts

 

[Undisclosed]

I've got to say, I thought that the 'bashing' posts must have been deleted/moderated, because I couldn't see any aggressive ones. If you think of PR as aggressive nowadays, you'd have had a really hard time a few years back! I'd just been saying that I never seem to get in arguments here anymore (maybe I'm the bully?! I've won all the arguments!).

Nothing has been moderated.

Kina I thought you meant posting publically... I just might take you up on the Moderator board ... I know a lot of people have certainly contacted me about this "issue"... I am new here and don't understand or get all of the politics involved... My Daddy always taught me ... if you can't say something nice - then shut up!! Or if you basically want to say someone is stupid or uniformed or all of the other ridiculous things that were written do it privately! I just went through and read of the posts and all but a 2 or so were supportive. None of them saw the need to make me feel like a stupid uninformed person, or someone undermining the "great good" of this nasty illness, or someone who didn't read their consent forms, and the list goes on of complete innacuracies... Trust me me when I tell you this....After what I have been through the last year...and then finally posting my experience....and then getting the comments that
I did...you would see it as a personal attack as well... It has been an emotional experience for all of us...and I am sorry I just choose to KEEP IT REAL.

I did mean posting publicly though Conversations fall under the umbrella of Moderation if reported.

The members here like to discuss the pros and cons of all things ME/CFS. Not supporting somebody's opinion does not mean they are being rude, it means they have a different opinion. These members who have a different opinion or are questioning things, do not deserve to be attacked either. Again if somebody is being inaccurate, then politely correct them rather than posting all sorts of angry responses. It's fine not to like the responses of members who you feel are being unsupportive but they are not attacking you as a person, they are commenting on the content of what was posted. We can't tell members what to say or how to say it unless they are breaching the rules. I see no personal attacks on this thread but as a moderation issue this needs to be addressed either privately via Conversation or Reported Posts.

What is the difference between you keeping real and another person keeping it real -- personal experience.

Anyways, this really needs to be addressed elsewhere as this thread is about Rituxan. Further comments will likely be removed so it would be better to hash this out in the appropriate place.

 

[IreneF]

Posts and blogs about experimental treatments such as ritux have already been misused by uninformed outsiders, on a science and medicine blog, and could have easily been picked up by mainstream media. That's one of the reasons I've been pretty quiet about my experiences even though many people here are intensely curious about ritux.

Someone outside of the US was upset that at least one person in her country was traveling here to get ritux treatments, so she got in touch with a particular blogger who made some unfounded allegations. There was a great deal of misinformation, prejudice, and misunderstanding. I certainly don't want that to happen again.

Certain people have painted cfs/me patients and activists as dangerous nutcases, who by their behavior have impeded valuable research by spooking the researchers. I think all of these allegations stem from the UK, but we certainly don't need any more of that nonsense either.

Not everyone is going to be your friend.

Think before you post.

 

[jstefl]

Jacque:

I want to thank you for posting your experiences with Rituxan. I have been following the Rituxan story closely, but haven't had the courage to give it a try myself.

I am very sorry that it didn't work out for you. At least, you can feel that you are doing everything possible to get better. Rituxan was never promised to work for everyone, so if there is anyone out there that objects to your reporting your results, they need to get real.

It is very understandable that some people may sound a bit harsh. This illness really messes with your brain. I know that there have been times when I have said things that I would like to take back.

I am sure that there are a lot of members that have placed high hopes on a cure that Rituxan may promise. There have been so many promising treatments that haven't lived up to their promise in the past, and none of us want to be let down again. For a while, I thought that Valcyte was the answer, then I started looking at anti-retrovirals when there was excitement about XMRV. All of a sudden, Rituxan was going to fix us. As we learn more, the Rituxan doesn't live up to the early hype. It will be years before we know the long term effects on ME/CFS.

It is too bad that you are not able to tolerate the Valcyte. That is one drug that has helped me. I took it for 8 months back in 2007, and am still feeling the improvements that it helped me make.

When it comes to PR, there may be a few bad apples out there, but the overwhelming majority of the members are, in my experience, wonderful people that just want to help others, in spite if their own condition.

Hang in there, I am more hopeful that ever that the researchers are getting close to solving this problem.

John

 

[user9876]

Ok... I completely understand what you are saying.....but......shouldn't we just shut the site down then? I mean some people do horrrrrible on Valcyte...and post about it...and some get well....others feel horrible from the Methylation and post about it...some stick with it some don't ETC ETC So do we all just shut completely up and not share what our personal experience? I am perplexed about this as I would never want to slow down research. I was reading about Rife machines for Lyme today...lots of negative as well as positive. And I am glad I read it ALL... I am at a loss on this subject as I am not a paranoid type and never considered someone using our words against us... I joined this site because I thought I would be with like minded/bodied peeps tryin to wade through this crap together... God this illness is just INSANE on so many levels isn't it.... sigh

I think there are always those who will search for words that they can use against us and comments that treatments are not working for individuals. I think the answer is not to stop sharing experiences but to challenge those misleading reports in the press. It seems significant to me that those who do this also claim to believe in evidence based medicine and dismiss patient reports of the dangers of GET as 'anacdote'.

If journalists are reading the thing that they should be picking up on is that patients are having to fund their own trials because so little government money is funding medical research into ME.

 

[smoothfox99]

* Oh and PS to those of you who are considering Rituxan...if you fall into the PAIN syndrome category my opinion is DON'T do RITUXAN!!! I asked my doc if I was the only one responding with an inflammitory BOMB response...and his reply was "No that those who have the pain syndromes are experiencing this".... Wish I would have known that before throwing 7K out the window! Guess I get to be rich in my next life.... ;("



I am writing in response to the first message in this thread.

I too have reacted terribly to Rituxin. I also have the worst pain and of every type.

I wanted to post sooner but I'm emotionally and physically devastated.
The worst part was that my doctor who gave me Rituxin was extremely neglectful once I began to take a turn for the worst. If I hadn't had other doctors I would not have ever been diagnosed in time.

For me, I do regret it. Being on Rituxin led to me getting two serious infections at the same time, c. Diff, and the very weird and rare Actinomyces. My pain is off the charts now and I had to have lung surgery due to the innumerable lung lesions. Because I have ME I ended not recovering and my ribcage now hurts like hell along with an air pocket and many scars.

I was hospitalized for a week back in Febraury/March. I finished my 5th Rituxin dose Dec 30. The past year has been worsening hell. I have thrown up more in the past year than I have my entire life.

I feel stupid and naive but the worst is feeling powerless.

My heart's ejection fracture after Rituxin is at 45% and I am only 26. I hate this disease which led to my desperation for treatment. I've also tried Valcyte which did nothing.

I wish that this had worked but for me it did not.

 

[Firestormm]

Another plan is I am going to Interview Dr. Madill in Sebastabol California. He is VERY up on the BRAIN and its involvement in this illness as written about in Dr. Goldsteins book BETRAYAL of the BRAIN... His theory is that the infections have damaged the Limbic system of the brain....causing it to misfire and send out inaccurate signals in regard to pain, autonomic dysfunction, etc etc... The idea will NOT go away and Dr. Madill is the only doc who I have found that is up on Goldsteins work. If you know anyone else let me know of if you have any info on Madill let me know... I will post here after my appt which I will make in the next month and let u know his thoughts!! I often wonder why all of us have symptoms all over the map....??? could it be because different areas of the brain have been hit, damaged, and disregulated??? Pfffft like I said, what do I know?

Morning Jacque

How goes it? I'm just catching up on the thread. Seems like you feel you've kicked over an ant's nest. Hope that's all settled down a bit now. Rather a wake-up call to on-line posting, I'll bet. Used to scare the crap out of me - posting comments and experiences on-line. Jees. I still shiver even now thinking about some of those instances

Anyway, I wanted to ask if you had made any headway with the above? I'd be interested in hearing anyone's opinion about the brain and how 'this disease' might be affecting it's ability to function.

Keep your chin-up

 

[IreneF]

RachME65

I am so sorry to hear that. You have my deep sympathy.

 

[Firestormm]

* Oh and PS to those of you who are considering Rituxan...if you fall into the PAIN syndrome category my opinion is DON'T do RITUXAN!!! I asked my doc if I was the only one responding with an inflammitory BOMB response...and his reply was "No that those who have the pain syndromes are experiencing this".... Wish I would have known that before throwing 7K out the window! Guess I get to be rich in my next life.... ;("



I am writing in response to the first message in this thread.

I too have reacted terribly to Rituxin. I also have the worst pain and of every type.

I wanted to post sooner but I'm emotionally and physically devastated.
The worst part was that my doctor who gave me Rituxin was extremely neglectful once I began to take a turn for the worst. If I hadn't had other doctors I would not have ever been diagnosed in time.

For me, I do regret it. Being on Rituxin led to me getting two serious infections at the same time, c. Diff, and the very weird and rare Actinomyces. My pain is off the charts now and I had to have lung surgery due to the innumerable lung lesions. Because I have ME I ended not recovering and my ribcage now hurts like hell along with an air pocket and many scars.

I was hospitalized for a week back in Febraury/March. I finished my 5th Rituxin dose Dec 30. The past year has been worsening hell. I have thrown up more in the past year than I have my entire life.

I feel stupid and naive but the worst is feeling powerless.

My heart's ejection fracture after Rituxin is at 45% and I am only 26. I hate this disease which led to my desperation for treatment. I've also tried Valcyte which did nothing.

I wish that this had worked but for me it did not.

I am also sorry to hear of your experiences RachME. It was one of my concerns that Ritux would knock out perhaps the body's ability to fight infection and one of the things I would need reassuring about should this drug be formally approved for use. I dare say that not everyone will experience the increased risk - but it is a risk I think nonetheless.

When you were in hospital, I'd be interested in learning what the doctors' there thought about the effect of Ritux and your resulting infections. Did they make this link? Thanks.

Hope you begin to feel a little better soon

 

[heapsreal]

* Oh and PS to those of you who are considering Rituxan...if you fall into the PAIN syndrome category my opinion is DON'T do RITUXAN!!! I asked my doc if I was the only one responding with an inflammitory BOMB response...and his reply was "No that those who have the pain syndromes are experiencing this".... Wish I would have known that before throwing 7K out the window! Guess I get to be rich in my next life.... ;("



I am writing in response to the first message in this thread.

I too have reacted terribly to Rituxin. I also have the worst pain and of every type.

I wanted to post sooner but I'm emotionally and physically devastated.
The worst part was that my doctor who gave me Rituxin was extremely neglectful once I began to take a turn for the worst. If I hadn't had other doctors I would not have ever been diagnosed in time.

For me, I do regret it. Being on Rituxin led to me getting two serious infections at the same time, c. Diff, and the very weird and rare Actinomyces. My pain is off the charts now and I had to have lung surgery due to the innumerable lung lesions. Because I have ME I ended not recovering and my ribcage now hurts like hell along with an air pocket and many scars.

I was hospitalized for a week back in Febraury/March. I finished my 5th Rituxin dose Dec 30. The past year has been worsening hell. I have thrown up more in the past year than I have my entire life.

I feel stupid and naive but the worst is feeling powerless.

My heart's ejection fracture after Rituxin is at 45% and I am only 26. I hate this disease which led to my desperation for treatment. I've also tried Valcyte which did nothing.

I wish that this had worked but for me it did not.

thanks for sharing your experiences, it helps many people to make a more informed decision.
I think your experience shows how important it is to get people into the right sub sets for treatment.
I hope u start to feel better soon from this experimental treatment.

cheers!!!

 

[Firestormm]

thanks for sharing your experiences, it helps many people to make a more informed decision.
I think your experience shows how important it is to get people into the right sub sets for treatment.
I hope u start to feel better soon from this experimental treatment.

cheers!!!

Totally agree, Heaps. I hope that this risk for those in the prominent pain group has been something that prescribing physicians and researchers are aware of.

 

[maryb]

Totally agree, Heaps. I hope that this risk for those in the prominent pain group has been something that prescribing physicians and researchers are aware of.

I'm sure they are - they are all collaborating on these studies from what I've read

 

[Jacque]

Morning Jacque

How goes it? I'm just catching up on the thread. Seems like you feel you've kicked over an ant's nest. Hope that's all settled down a bit now. Rather a wake-up call to on-line posting, I'll bet. Used to scare the crap out of me - posting comments and experiences on-line. Jees. I still shiver even now thinking about some of those instances

Anyway, I wanted to ask if you had made any headway with the above? I'd be interested in hearing anyone's opinion about the brain and how 'this disease' might be affecting it's ability to function.

Keep your chin-up

Yah that experience did suck a little....! What ever...
No I have not contacted Dr. Madill as of yet...but will in the future... Just too down and sick to drive the 8 hours right now.
I have ordered a BCX Ultra however... www.bioelectricsforhealth.com I have been researching it for over a month now. I am a true believer in Rife technology as I have a rife machine already but it is one of the cheaper models. When I run the Candida settings...I get white poo..(GROSS I KNOW)... When I run the Lyme settings my bones are on FIRRRE that and I herx like crazy... But I wanted the BCX bc they have added all of the co-infections to Lyme and all of the Viruses we with ME have in there too...along with detox settings. There is a clinic in Phoenix Az. (Evita) which is highly regarded and they recommend all of their Lymies to get a BCX. Many other Lyme docs here in the US are recommending them. The woman who sold the BCX to me (Judy Erwin, NP) had Rocky Mountain Spotted Fever and had lost most motor function and was literally dying... She brought herself back with the BCX and now has a LIFE... She was very CANDID with me... said I will go through HELL with the herxing knowing I have the detox mutation gene... She said I am looking about about 2 years (because I have been sick for 40)...If I can kill the fungus, bacteria, viruses, etc off without damaging my immune system...it feels like a no brainer to me. I was hoping there was a way I could get well without having to fight the Lyme beast...but I don't think there is... I also spoke with another guy in Az. who was completely bedridden and unable to work with CFS, FM, EBV, HHV6, Lyme...and he functioning about 70% now after 10 mo of using the BCX. Told me he has gone through herx HELL... but it has been worth it... I have another friend who is not completing her 4th round of IV Abx for her CFS,Lyme, EBV etc...(it keeps coming back after her remissions)...she said her Lyme specialist wants her to get a BCX Ultra when done to keep the Lyme and infections knocked down - because as we all know...we can never get every last little bastard killed off! So after giving Allopathic medicine a shot I am gonna go a different route now - and fry the little bastards!!! Not looking forward to all the herxing - but it has to be done......... I am also going to do Himilyan sea salt capsules along with the BCX...

Well I am sure I have really stuck my neck out there posting this one!! This is just what I have decided after 40 years of battling this HELL on earth and this is my experience - I am not recommending this to anyone - but it is the direction I have decided to take...and I will keep you posted.

Hang in there... I am truly saddened about experience... big sigh... at least we tried.... Hugs...Jac

 

[Jacque]

And......sadly.... because we had the courage to try the Rituxan they now know that peeps who fall into the PAIN Syndrome craziness of this illness ... will likely not do WELL on the Rituxan... I hate it that we had to suffer so much for them to learn this...but our suffering served some purpose I am hoping... Would be so nice to end up on the positive end of things for once.... and I WILL... I just have to find what works for my sensitive body.... grrrrr

 

[IreneF]

RachME65--do you know what tests your doc ran before you started the infusions? Is he a specialist in anything? And what were the symptoms of your lung infection?

The reason I'm asking is because I had an infusion three weeks ago.

Thanks

 

[heapsreal]

And......sadly.... because we had the courage to try the Rituxan they now know that peeps who fall into the PAIN Syndrome craziness of this illness ... will likely not do WELL on the Rituxan... I hate it that we had to suffer so much for them to learn this...but our suffering served some purpose I am hoping... Would be so nice to end up on the positive end of things for once.... and I WILL... I just have to find what works for my sensitive body.... grrrrr

I was just talking about non responders to ritux with Alex, maybe its important to test and treat active infections before one starts rituximab and knocks out part of the immune system. There may be infections in b cells but they also hide out in nerves, muscles, brain etc so if we knock apart of the immune system out then maybe we have less control over these infections and they start going crazy and causing havoc. Maybe there needs to be a specific order in which these treatments are done. not saying this is the case but maybe your poor response to antivirals was because ritux knocked out your b cells and maybe u would have had a different response if u started antivirals first before b cells were depleted. Another option is to stay on antivirals long term the way dr lerner treats patients.

I think its looking like its more important to see what pathogens one has and to be able to distinguish them properly if they are active or not, not just igm antibodies. if someone has more then one pathogen then they wont see results by treating only one pathogen. dr lerner has found this out in his patients who were non responders to antivirals and found many had bacterial co-infections. I think fixing the immune system wont cure us as many of these infections are just to ingrained, we need to treat all the infections and then fix the immune system afterwards to stop them from reactivating etc. I think fixing the immune system is whats going to keep us functioning at a better level but its not going to get us to that level, only directly treating those active pathogens will.

Theres many questions just not alot of answers. the montoya and lipkin pathogen study i think will be interesting. Most healthy people test positive for the same pathogens many of us suffer with but our infections are active. They need to be able to distinguish between active and dormant infections.

 

[Jacque]

I think you may be on to something Heaps!! Guess we will know in time.... Meanwhile...onward and upward.. "hopefully"!!!