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How I found the underlying cause of my CFS--anti NMDA antibodies

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
ummm best price in EU for 55 g, I've found, is 2450 EUR, without the administration of course. you get it monthly? is the goal dose 2g/kg ? I think I read you did CellTrend and was positive for many?
The protocol is every 3 weeks. 2g/kg sounds high. I'm on what the doctor calls a "higher autoimmune dose" though there are others here on even higher doses per kg.
 

Aubry

Senior Member
Messages
189
Some people instead of getting "outbreaks" get "inbreaks" the latter being more concerning
@Shawn What do you mean exactly by inbreaks ? Herpes viruses that invade brain etc instead of giving the classical blisters? I think I have this.
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
@Shawn We are working with 3 doctors to come up with a plan for my son. They are thinking plasmapheresis and follow it up with rituximab. I see that plasmapherisis was short term for you. What do you think if you had done the plasmapheresis and immediatly started rituximab? Or what combo do you think is best based on your treatments so far?

I hope that you continue to improve!
 
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pattismith

Senior Member
Messages
3,932
I'm getting 55g, which is a middling dose around here.

A good chunk of the cost is labor...10 hours of time with the nurse.
@Learner1 ,

Did you have evidences of any auto-antibodies involved in your CFS/ME before your doc considered ritux treatment for you?
I just wonder if Ritux is sometimes prescribed to people without any significative auto-antibodies showing up at work lab...
 

pibee

Senior Member
Messages
304
The protocol is every 3 weeks. 2g/kg sounds high. I'm on what the doctor calls a "higher autoimmune dose" though there are others here on even higher doses per kg.

Gosh it seems i will just end up paying IVIG, any way I can think of, that's my only chance here.
 

Gingergrrl

Senior Member
Messages
16,171
thanks. that is for how many grams?

@pibee I don't know if this is helpful, but my IVIG is 82 grams (in a 3-day split dose) every three weeks but as of a couple cycles ago, we reduced the interval to every five weeks. My insurance auth (approval) for this ends in Dec and I am not sure if my doctor feels that I should continue with IVIG in the new year at a reduced interval (maybe every six weeks?) or stop at that point.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Learner1 ,

Did you have evidences of any auto-antibodies involved in your CFS/ME before your doc considered ritux treatment for you?
I just wonder if Ritux is sometimes prescribed to people without any significative auto-antibodies showing up at work lab...
Yes, I have auto antibodies. My doctor is not yet considering Rituximab for me. He did very conscientiously test me for and find several autoimmune issues prior to my starting IVIG. I assumed it would make the case for insurance if he wanted to try Rituximab.

However, from what I understand, you don't want to do Ritux with active infections...need to beat them back before trying it.
 

pibee

Senior Member
Messages
304
Anyone ever measured IgA autoantibodies to NMDAR, or IgM

Example:
https://www.ncbi.nlm.nih.gov/pubmed/22539565



https://www.ncbi.nlm.nih.gov/pubmed/25493273

This would be especially interesting to me because i have increased total IgA, and gradual progressive cognitive problems over 2 decades.

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upload_2017-11-12_18-53-21.png

upload_2017-11-12_18-53-44.png
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Perhaps you might benefit from some of the autoimmune fighting strategies that are out there. Antibodies can be suppressed, but IVIG and Rituximab are two strategies for getting rid of them, and there seem to be others as well.
 

vision blue

Senior Member
Messages
1,877
I finally did one Mayo panel for neural autoantibodies, but it was NOT the one with NMDA unfortunately. Also doubt the stability of the sample- drawn at a busy satellite lab, then sent to the main lab, then sent on to Mayo. They take al ong time to process the blood at the busy satellite lab, and just wonder if it was cooled appropriately etc.

I got a bunc of symptoms with a herpes infection. still dont' know if HSV1 or zoster, but I think the former. Produces a state of constant sympatetic overdrive, peppered with more intense attacks that I think could give me a storke (think very high blood pressure, pounding head, tachycardia.). Also at night, for a lack of a better descritpion "head zaps", every time i fall asleep am awakened with what feels like electicity slamming into my head. 30 times a night. Usually a bout of those will last 6 weeks, every single night in a row. is gruesome. Always comes when i get a herpes recurrence. but the blisters don't break any more, they just fade away and sometimes don't show at all (but get the prodrome). the antivirals get me too sick to take them, but i think did help when i tried.

incidentally, this was not i don't tink the start of my CFS. I 've had disabling fatigue for years. this was a "bonus" picked up i think from a hematologists stethescope- that was one of the sites of my first outbreak- there and forehead. exactly where she places sthethescope. I was going there for anemia- big mistake,. she was a scatterbrained kept having me come back for no reason. she had mostly cancer patients in the office, and I expect that's how i picked it up.

my rheum is happy to give me ritixumib, but with the recurrent herpes, i think i'd get even worse. he does not take it serously and thinks recurrent herpes is nothing.

thought about sending to that lab in germany, but theres' always so much to manage have not been able to do it.
 

Gingergrrl

Senior Member
Messages
16,171
I finally did one Mayo panel for neural autoantibodies, but it was NOT the one with NMDA unfortunately.

Which panel did you do? Was it positive for any auto-antibodies?

my rheum is happy to give me ritixumib, but with the recurrent herpes, i think i'd get even worse. he does not take it serously and thinks recurrent herpes is nothing.

I am wondering, since you seem to have active infections, if your rheum would be open to you trying IVIG vs. Rituximab at this point? Have you had IVIG in the past?

thought about sending to that lab in germany, but theres' always so much to manage have not been able to do it.

It might be helpful and informative but if you already test positive for auto-antibodies from Mayo (or other tests), it probably will not change your treatment plan.
 

Fogbuster

Senior Member
Messages
269
Where are you located? Have you had thorough immune system testing?

Hey, what is "thorough immune system testing"? I've had all the standard full blood tests through the NHS and nothing came back unusual.

I get memory issues, chronic sinusitis, muscle twitching, constant tremor, GERD, constant clearing of throat, head pressure, blank mind, anxiety, lowered mood. This happens after I exercise, eat foods which people with mast cell diseases have problems with, ingest a stimulatory supplement or too much caffeine or dark spirits. Even small amounts cause dysfunction, but it varies depending on quantity consumed.

Chronic cold exposure, cbd oil, sun 30 mins - 1hr /bright light device are all strong immune modulators which benefit me a huge amount. They all put me back in kilter and make me feel much more functional, better stress tolerance etc, just all round much more normal and feeling like my old self. Weaker immune modulators such as zinc, licorice, LLLT have a pretty significant effect too.

Do you know where I go from here if nothing came back in tests, but I have all this conclusive info? I react to all the exact same food groups as people with mast cell disorders, their worst and best food groups are coincidentally the same as mine, but again nothing came up in tests. Odd. I also get significant effects from things which balance the immune system. I seem to be TH2 dominant.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Hey, what is "thorough immune system testing"? I've had all the standard full blood tests through the NHS and nothing came back unusual.
I'm not familiar with what the NHS considers thorough testing, but here in the US, my doctors have tested:
  • Immunoglobulins G, A, E, M with subclasses
  • T cell, B cell, and CD57 panels
  • Cytokines
  • Infections