Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

JollyRoger

Senior Member
Messages
119
Likes
103
Hi guys....

I guess i already posted this information three times in this forum but I wrote to Prof. Scheibenbogen about this study.
I was tested positive for two of this antibodies (@Lolinda So I'm also in your boat) and I asked for the results...with a success rate of 30%.
But I don't know the criteria of positive responder- a long term healed patient, maybe??
 

Nickster

Senior Member
Messages
308
Likes
2,418
Location
Los Angeles, CA
At the Charite (Berlin) there is currently underway a study on plasmapheresis in patients with CFS at the immonology group of Prof. Scheibenbogen.

I am a participant in this study and want to share my experiences.

The study is based on the observation that they found in a subgroup of patients elevated autoantibodies. They are in constant exchange with the group in norway studying rituximab.
See also:
http://forums.phoenixrising.me/index.php?threads/antibodies-to-ß-adrenergic-and-muscarinic-cholinergic-receptors-in-patients-with-cfs.40109/
http://linkinghub.elsevier.com/retrieve/pii/S0889159115300209?via=sd

The study is conducted in collaboration with Fresenius Medical Care who contribute the filters and have experience in plasmapheresis in autoimmune conditions. 7 to 10 patients will be finally included based on the outcome of the first patients. They have chosen the candidates based on autoantibody and symptom level. As far as I understood the goal is to radically deplete the level of antibodies to ß adrenergic and muscarinic cholinergic receptors, see whether there is symptom relief and therby exploring whether these antibodies play a causative role in pathogenesis. Plasmaphersis was applied on 3 consecutive days, then 2 day break (weekend) followed by 2 more days of therapy, and finally IgG substitution. The latter is due to the fact that
all IgG antibodies were depletd ("good" and "bad" ones) and they wanted to restore some level of immunity.
At the end of day 5 my IgG level was below detection threshold.

Additionally, in my layman words, there is the speculation that by depleting the antibodies radically, a evolutionary stress is applied to the B cell generations thereby causing sort of "reset" similarly to rituximab. Probably I will be in an addtional 5 day course of plasmapheresis with the goal to further apply a reset. But this will depend on testing in 4 weeks.

I was told that they found so far a response in 3 out of 4 persons, mostly a rather transient one, which fits to the fact that antibodies will be replaced. My personal experience was a significant improvement in vision, less dizziness, and two weeks beeing less fatigued, less lymph node pain. It was quite difficult to assess, because I had a convalscense of a flu which always causes a worsening of my CFS symptoms...
Altogether I would say I had moderate response (at very least the moderate effectiveness the PACE trial claims!) But, we don't rely on subjective outcomes, I wear an actimeter one week each month, results pending.

Finally, even if the result comes out as only a transient one, this study could help to establish or falsify a causal link of symptoms and autoantibodies in a group of us. This conclusion would not be limited to the specific autoantibodies mentioned above but to autoantibodies in a more general sense, as long they are sensitive to the filter (i.e. IgG).

I'm grateful to be part of this endeavour. Hope to see the results published, but my guess is not before mid 2017.

Many thanks to the group of Prof. Scheibenbogen!
My son was recommended plasmapheresis and I see that you have had experience with it. How are you doing now? Did this treatment help you?
I hope that you are doing well.
Ann
 

Gingergrrl

Senior Member
Messages
14,668
Likes
43,757
My son was recommended plasmapheresis and I see that you have had experience with it. How are you doing now? Did this treatment help you? I hope that you are doing well. Ann
@Nickster Since we both live in the same general area, I was curious where your son was recommended PP? No worries if not comfortable sharing (which I totally understand)!
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,369
Location
Southern California
Thru Good Samaritan or CHOC (even though he is 26 years old). He is just in the beginning of this process so we will see. Do you have a place that you like?
I have heard excellent things about CHOC, unfortunately I'm past their age cutoff so I can't get plasmapheresis there. I'm trying at Good Samaritan too. Let me know if you make progress there
 

Gingergrrl

Senior Member
Messages
14,668
Likes
43,757
Thru Good Samaritan or CHOC (even though he is 26 years old). He is just in the beginning of this process so we will see. Do you have a place that you like?
I have never done PP and tried for months in 2016 but all of my doctors felt it was too dangerous for me, or had never prescribed it, and were not comfortable with it. I have a doctor at Good Sam and am wondering if it is the same person and he has changed his opinion of PP? Even though I have already asked Jesse this, I forgot what CHOC stands for... but if he is past the age cut-off, then I am definitely past it LOL :eek:. It is more out of curiosity for future reference and at this point I am not planning to pursue PP.
 

Nickster

Senior Member
Messages
308
Likes
2,418
Location
Los Angeles, CA
I have never done PP and tried for months in 2016 but all of my doctors felt it was too dangerous for me, or had never prescribed it, and were not comfortable with it. I have a doctor at Good Sam and am wondering if it is the same person and he has changed his opinion of PP? Even though I have already asked Jesse this, I forgot what CHOC stands for... but if he is past the age cut-off, then I am definitely past it LOL :eek:. It is more out of curiosity for future reference and at this point I am not planning to pursue PP.
CHOC is the Children's Hospital. The doc from Good Sam who is a cardiologist said that he has seen some good results from 2 patients that were both in there late twenties and saw a certain hematologist who performed plasmapheresis. He said that they responded better to this vs. ivig. This is all new so we are seeing what happens.
 

Jesse2233

Senior Member
Messages
1,942
Likes
5,369
Location
Southern California
CHOC is the Children's Hospital. The doc from Good Sam who is a cardiologist said that he has seen some good results from 2 patients that were both in there late twenties and saw a certain hematologist who performed plasmapheresis. He said that they responded better to this vs. ivig. This is all new so we are seeing what happens.
I think we all have the same cardiologist ;)
 

Gingergrrl

Senior Member
Messages
14,668
Likes
43,757
Yep... is CHOC part of Good Sam? I will start a PM w/all three of us (later) b/c Dr. C was not referring patients for PP the last time I saw him (well over a year ago) but he was very supportive of me doing IVIG (at a different location and w/different doctor).
 

Gingergrrl

Senior Member
Messages
14,668
Likes
43,757
We saw Dr C today and he thought in Nicks case to do PP due to his severity that this would help. He is a very compassionate man. He tried doing the mast cell route, but, Nick has a hard time with sensitivities and drug interactions. He told me that he had mixed results with ivig.
I agree that he is a very compassionate man but in the end, my case kinda baffled him. He was clear that I had severe POTS and MCAS but my muscle weakness and breathing weakness confused him. He put me in hospital on cardiac unit for a week in 2014 and I had various tests (two of which were botched up very badly, the TTT & ACTH Stim test, although in fairness by the people who ran them and not by him).

He later thought I had "microvascular angina" but then felt that was not the right diagnosis either. It didn't matter b/c NOTHING he tried brought my BP much above 80/50 (so it was too dangerous to take Nitro). I ultimately learned through Mayo blood tests (w/a one-time Neuro consult) that I had two obscure autoantibodies which led me to pursue further antibody testing w/my main doc.

Dr. C still prescribes my POTS meds (Atenolol, Midodrine & Potassium) but the last time I saw him (well over a year ago), he was out of ideas. He supported me trying IVIG and he referred me to a Neuro but then she declined me IVIG and did not even understand that my calcium autoantibody required ongoing cancer screenings!

At that point, my main doc & mast cell doc both felt IVIG was without question the way for me to go so we proceeded without a Neuro. My BP on average day since IVIG is 103/73 (but Dr. C does not even know this)!

My experience with CHOC was a long time ago and rather horrific. Misdiagnosis as a primary depression patient, locked up, and given ECT. Good to know CHOC treats ME/CFS patients a bit more humanely these days.
I thought that your depression misdiagnosis and mistreatment was w/Kaiser? Is CHOC part of Good Sam (sorry to ask again, I am still confused on this part)?! Did this occur when you were a child or they treated you as an adult? I am so sorry you went through all of this. I know I've told you that before but it is still horrifying to me.
 

Webdog

Senior Member
Messages
1,268
Likes
4,050
Location
Planet 9 via Interplanetary Overlay Network
Jesus, that's awful, sorry that happened to you. How long ago was that?
1979. I was a minor, so had no part in the decision making process. To be fair, I was referred by a psychiatrist outside of CHOC, and my parents (doing what they thought would help me) went along with his diagnosis and treatment. But the lockup and shock treatments were done at CHOC.

Edit: Most of my memories were permanently erased, but I do remember a kind nurse telling me I didn't belong there. She knew.
 
Last edited:

Webdog

Senior Member
Messages
1,268
Likes
4,050
Location
Planet 9 via Interplanetary Overlay Network
I thought that your depression misdiagnosis and mistreatment was w/Kaiser? Is CHOC part of Good Sam (sorry to ask again, I am still confused on this part)?! Did this occur when you were a child or they treated you as an adult? I am so sorry you went through all of this. I know I've told you that before but it is still horrifying to me.
I've been sick for 39 years. I've only had Kaiser for the past 17 years. It's been a long running comedy of misdiagnoses.

In my experience, doctors tend to just accept the previous diagnosis and not want to dig any deeper. Even when the diagnosis makes no sense.

But I don't want to derail this thread.
 

aquariusgirl

Senior Member
Messages
1,641
Likes
609
It's just tragic to think that people with brain inflammation were subjected to ECT. What a ghastly travesty.

I see even Dr Richard Horowitz (in his you tube presentations) is saying you have to get SOD working .... you have to have that antioxidant defense system working ... in these neurologically sick patients.

For, me that was the start of getting brain inflammation down.... that followed by Alinia.

Sorry, getting off topic.
 
Last edited:

Nickster

Senior Member
Messages
308
Likes
2,418
Location
Los Angeles, CA
At that point, my main doc & mast cell doc both felt IVIG was without question the way for me to go so we proceeded without a Neuro. My BP on average day since IVIG is 103/73 (but Dr. C does not even know this)!
That is good to hear about your BP. You are doing so well and you encourage me to keep trying. You never know where the help is going to come from.

Dr C actually said that my son was too sick to go into the hospital for the testing in the hospital (which was his first thought to admit him and test him). Perhaps he learned from prior cases such as yours that it did not help.

Which doctor do you think helped you the most? Can you private message me your primary doctor?

Thank you.
Ann
 

Gingergrrl

Senior Member
Messages
14,668
Likes
43,757
Hi Ann, will PM you later today and was going to include Jesse in the PM, too, since we all have the same cardio and can compare notes on certain things.