Got treatment in the EU and doing well starting remission

[SK2018]

Original Diagnosis:
CFS
Re Diagnosis:
Systemic immune dysfunction with NMDA autoimmunity.
Symptoms:
Fatigue,brain fog ,swollen glands ,flu syndromes after physical exertion,vivid dreams,inability to gain cognitive or physical energy after sleep,tingling ,Numbness ,trouble thinking,gait issues,de realization,

Hey everyone

It's been a while since an update , I am in mainland Europe now and have just finished plasmapheresis and I am on 80mg of steroids per day.
I had 4 Grams of IV steroids 3 weeks ago and had no side effects despite the massive dose.

Yesterday I finished a 1000mg infusion of the cytotoxic immune modulating drug (cyclophosphamide) and luckily
til now I don't have any adverse reactions.
After 2 more plasmapheresis sessions i will fly to Switzerland to get BORTEZOMIB which is a drug similar to Rituximab but better in the sense that not only does it effect B cells it also effects non CD20 "plasma cells" such as long lived plasma cells that secrete antibodies.

After talking to some patients that didn't respond well to Rituximab they were able to get good improvement with bortezomib and the safety profile in many cases is better than RTX esp when given as sub cutaneous infusions and finally the cost of the drug is similar to RTX.

I have improved since starting my treatment my fatigue is down 50% I don't get flu symptoms after doing too much and I can think more clearly ,I am happy to be making progress.

The doctors in Europe have been great ,they communicate with me and try their best to help me ,it's a world apart from the disgusting attitude of some NHS physicians.I will have a new friend outside of medecine with this Doctor when I leave here for sure.

After I get the Bortezomib I will update again 2 weeks after infusion.
My IGG viral titers have all came down to near normal levels since treatment also so instead of 1:350 1:400 they are now 1:40 and 1:50 ect.

For more info on Bortezomib please check here.
http://www.futuremedicine.com/doi/full/10.2217/imt.15.66?src=recsys&

Sadly I was not able to tolerate Rituximab due to infusion reactions;(

I hope my struggle can inspire you all to never give up you WILL find a path out of this and get your lives back.

Regards
www.facebook.com/shawnkregan

Disclaimer:
This is the treatment plan that I and my doctor have decided is best for my situation ,please always consult with your doctor before perusing any treatment regimens with potentially risky drugs to weigh out the risk benefit ratio.

BACKGROUND STORY
My original post and background.
http://forums.phoenixrising.me/inde...g-cause-of-my-cfs-anti-nmda-antibodies.47413/

 

[perrier]

Please indicate which clinic you are at, if possible.....

 

[SK2018]

Please indicate which clinic you are at, if possible.....

PM me please ,as I don't want prying medical eyes in the UK to know where I am being treated at.

 

[Gingergrrl]

@Shawn Is Bortezomib only available in the EU or also in the US? I will Google it but was curious if you happened to know from all your research?

Am thrilled you are feeling better and your story has inspired me not to ever give up searching for answers (even though you probably don't know that)!

ETA: Just Googled it and it looks like it is approved in the US for multiple myeloma.

 

[Kenny Banya]

Can you please advise costs for your treatment?

 

[dangermouse]

@Shawn I am really pleased to hear of your improvements and thanks for updating, I will look forward to hearing further progress.

 

[SK2018]

I am using my EHIC insurance
Card so I won't know costs until the bill comes in, i will
Be covered for 70-80% so shouldn't be too much.

Can you please advise costs for your treatment?

 

[SK2018]

Thank You ,considering I just poisoned my cells with 1000mg of Cyclo I don't feel too bad

@Shawn I am really pleased to hear of your improvements and thanks for updating, I will look forward to hearing further progress.

 

[Jenny TipsforME]

fatigue is down 50% I don't get flu symptoms after doing too much and I can think more clearly

I'd love this right now!

I am using my EHIC insurance
Card so I won't know costs until the bill comes in, i will
Be covered for 70-80% so shouldn't be too much.

This is VERY interesting! Can we do some health tourism before we get thrown out of Europe?! I'd want to know what costs I'm liable for though.

Do you have to be an emergency when you turn up at an EU hospital? I probably would be, by the time I got there. I wonder if already knowing what the problem is helps you @Shawn , or would diagnostic tests also be included?

 

[SK2018]

Because I have documentation including Oxford lab results and many other documentation from Asia they understand timely treatment is expected so I am usually admitted via ER,I have never had any problems being admitted anywhere except in Edinburgh which they are now being sued for

I'd love this right now!

This is VERY interesting! Can we do some health tourism before we get thrown out of Europe?! I'd want to know what costs I'm liable for though.

Do you have to be an emergency when you turn up at an EU hospital? I probably would be, by the time I got there. I wonder if already knowing what the problem is helps you @Shawn , or would diagnostic tests also be included?

 

[Jenny TipsforME]

Hmm without relevant documentation I suspect they'd just shrug their shoulders (yes I'm imagining a stereotypical French shrug ).

 

[SK2018]

Hmm without relevant documentation I suspect they'd just shrug their shoulders (yes I'm imagining a stereotypical French shrug ).

If you want your health back which you obviously do ,we must be brave and focus on the positive not unlikely negatives,your sick,you need help and I believe if you express that properly and they feel the same they should be able to find out something to help you ,this is not the disaster which is tye NHS here ,sure having a verifiable auto antibody helps like I do ,but there are other way to find reactions in antibody negative people such as staining rat brains with serum or CSF to see immunological reactions ect.
I KNOW it's hard believe me when I first traveled I was in a bad state and had to be taken from a virgin flight by ambulance,I barely made it ?yet had I not attempted it I would not be here today in the same functional state perhaps? In life we must take calculated risks to elicit gains and as long as the potential latter outweighs the former I believe it's worth it but of course not without advice and guidance from a trained medical professional first ,albeit one that cares enough to listen and trusts you.

 

[Jonathan Edwards]

@Shawn,
Am I right in thinking that you are being treated on the basis of presumed diagnosis of autoimmune encephalopathy rather than CFS? It may be important to make that clear to people on the forum with ME/CFS.

 

[SK2018]

Correct ,Mainly due to anti NMDA auto antibodies yet there are other markers and symptoms that pull me somewhere between this and CFS and out of the typical "just encepalopthy" diagnosis ,for example the systemic flu symptoms worsening after exertion which lasts for a week or more after I over do things usnuauly high IGG viral titers and inability to renenegrgize after even 11 hour sleeps ,swollen glands ect also those and other symptoms were why I was originally diagnosed as having a form of CFS rightly or wrongly who knows ,and since we don't know what exactly ME or CFS is "yet" and so many people here seem to have different presentations or combos of many of the same symptoms due to different triggers I think it's fair to say that most of us have some sort of immunologically driven dysfunction with varying phenotypes.

However I have made it very CLEAR in my post that people should NOT persue treatment which could be harmful or toxic without consulting advice from a medical professional or doctor,I found something that helps me but i ran it through doctors first ,but obviously finding a doctor that Listens to you and tries to help is the main start.

What works for me may not work for some that's why some People with ME responded to Rituximab and some did not ,in fact some actually GOT WORSE different phenotype ? Or different disease? Certainly does not sound like their ME is all the same at all. Point is @Jonathan Edwards WE DONT KNOW yet ,but my struggle gives people hope and I am happy to share that ,.if only.

@Shawn,
Am I right in thinking that you are being treated on the basis of presumed diagnosis of autoimmune encephalopathy rather than CFS? It may be important to make that clear to people on the forum with ME/CFS.

 

[hinterland]

http://www.bbc.co.uk/iplayer/episod...dicine-dr-westons-casebook-series-1-episode-6

Timecode 49:50: NMDA-antibodies.
Timecode 55:30: Prof Belinda Lennox, Oxford, UK - Immunotherapy for schizophrenia trial.

 

[Tally]

Mainly due to anti NMDA auto antibodies yet there are other markers and symptoms that pull me somewhere between this and CFS and out of the typical "just encepalopthy" diagnosis

While it's certainly possible to have two different illnesses at once, right now as things stand ME/CFS is a diagnosis of exclusion. Since diagnosis is based solely on symptoms, you can't get ME/CFS diagnosis until you get symptoms of the other illness under control. The whole ordeal with ME/CFS is that all our test results come back negative, while yours have not.

I would of course never claim that you don't have ME/CFS, but since we don't have biomarkers (yet) I don't see what they would base your ME/CFS diagnosis on right now.

 

[SK2018]

While it's certainly possible to have two different illnesses at once, right now as things stand ME/CFS is a diagnosis of exclusion. Since diagnosis is based solely on symptoms, you can't get ME/CFS diagnosis until you get symptoms of the other illness under control. The whole ordeal with ME/CFS is that all our test results come back negative, while yours have not.

I would of course never claim that you don't have ME/CFS, but since we don't have biomarkers (yet) I don't see what they would base your ME/CFS diagnosis right now.

Many here their auto antibody tests come back negative as many auto antibodies that could be causing issues have not been identified or discovered and thus can't be tested for ,another large percent of these people have not tested for all auto antibodies or have been DENIED such testing.An auto antibody can be just a marker of a more widespread or systemic immune dysfunction which "many" people believe ME is hence the inclusion of the updated title term CFIDS chronic fatigue immune dysfunction syndrome. which brings us back to the point ,we just don't know yet ,but far more evidence
Points towards ME CFS being an autoimmune or immunological B cell dysfunction.

Originally i didn't buy there wastebasket diagnosis even though they are experienced in doing such ,I know there is always an underlying cause and being the type of person I am I almost bankrupted myself and went to incredible hardship to try and figure it out, as without markers I would not
Be able to get treatment easily,I effectively had no choice.

 

[Tally]

Many here there auto antibody tests come back negative as many auto antibodies that could be causing issues have not been identified or discovered and thus can't be tested for ,another large percent of these people have not tested for all auto antibodies or have been DENIED such testing.An auto antibody can be just a marker of a more widespread or systemic immune dysfunction which "many" people believe ME is hence the inclusion of the updates title term CFID chronic fatigue immune dysfunction which brings us back to the point ,we just don't know yet ,but far more evidence
Points towards ME CFS being an autoimmune or immunological B cell dysfunction.

One of the first advice any person who suspects ME/CFS will get is: "Get all the tests done that you can.
Your advice to get tested for NMDA autoantibodies is a good one, as people might have that instead of ME/CFS. But let's not get that mixed up with ME/CFS being connected with those antibodies.

If that test is available to you, it is also available to Dr. Mella and Fluge and Dr. Davis and neither have found it connected with ME/CFS.

 

[SK2018]

One of the first advice any person who suspects ME/CFS will get is: "Get all the tests done that you can.
Your advice to get tested for NMDA autoantibodies is a good one, as people might have that instead of ME/CFS. But let's not get that mixed up with ME/CFS being connected with those antibodies.

If that test is available to you, it is also available to Dr. Mella and Fluge and Dr. Davis and neither have found it connected with ME/CFS.

Thank you.. That's also brings me back to the point that likely many people here diagnosed with ME or CFS do have a detectable cause or antibody and what I am doing here is simply encouraging people to "GO AND SEARCH FOR IT" ,search for that marker that can help the medical industry to take them more serious as only if they search might they find it and then and only then would they be entitled to treatment within more mainstream forms of Medecine.

Actually I have spoke to some people a few via here diagnosed as having ME by "ME CFS" specialists like I was only later to have positive ANA markers , LG1 antibodies and even NMDA so ...it's all perplexing indeed.

Rituximab is a great treatment for anti NMDA also yet it has helped people with unexplained ME CFS too some immensely ,so this is all relevant and helpful but people MUST get medical advice obviously before embarking and I trust the intelligence and maturity of people on this forum to do just that.

 

[Aurator]

Correct ...Point is @Jonathan Edwards WE DONT KNOW yet ,but my struggle gives people hope and I am happy to share that.

So in what respect, if any, does the treatment you're currently being given differ from the standard treatment for autoimmune encephalopathy? If you are receiving different treatment from the standard treatment, what explanation, if any, have you been given for the difference? Has any medical professional where you currently are explicitly told you that you are being given "X", for example, or more of "Y", to target your ME/CFS?