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

[crypt0cu1t]

Also in an earlier post SK2018 mentioned a drug in development with more specificity than Rituximab, does anyone know the name of said drug?

There are lots of drugs that target specific parts of the immune system. Can you PM me? I'd be happy to share some info with you.

 

[Gingergrrl]

Also in an earlier post SK2018 mentioned a drug in development with more specificity than Rituximab, does anyone know the name of said drug?

I believe that he is talking about "Lemtrada" (Alemtuzumab) but I could be wrong. @SK2018, please let us know how you are doing when you have a chance!

Also @pibee, how are you doing? I haven't seen you post in a while and hoping you are okay.

 

[pibee]

I believe that he is talking about "Lemtrada" (Alemtuzumab) but I could be wrong. @SK2018, please let us know how you are doing when you have a chance!

Also @pibee, how are you doing? I haven't seen you post in a while and hoping you are okay.

I missed this post, Gingergrrl. I am the same, maybe somewhat better than few months ago (thyme oil is helping), but nothing drastic. I am still waiting for IVIG and still not finished all diagnostics procedures, I've been to like 20 doctors only last 3 months :/
Hope I'll soon start IVIG and it goes well. Rituximab is not really smart option for me as I'd like to have kids in next few years.

Think some of my major symptoms are actually coming from vestibular system because when all this started I've got neuritis in my left ear (and numbness in whole left side of face). Right ear was intact. Then recently from thyme oil I had some changes in right ear, like it unplugged (it wasnt even plugged to begin with "), and many of my cogntive problems (spatial) improved. I began reading on vestibular system and it's amazing how many cognitive and psychiatric symptoms it can cause, from personality changes to spatial awareness, visual and motor skills.
Seems like neuropsyhiatric problems can be caused by unequal processing from left and right ear.

I remeasured CellTrend and it's even higher, a1 to 43 and b2 to 43, but M4 dropped from 48 to 14. Weird.


Hope you're still well!

 

[Gingergrrl]

I missed this post, Gingergrrl. I am the same, maybe somewhat better than few months ago (thyme oil is helping), but nothing drastic. I am still waiting for IVIG and still not finished all diagnostics procedures, I've been to like 20 doctors only last 3 months:/ Hope I'll soon start IVIG and it goes well.

No worries about missing this post and I am glad that you are doing okay @pibee. Keep us posted how it goes if/when you start IVIG.

Rituximab is not really smart option for me as I'd like to have kids in next few years.

I knew that I was not going to be having children so this part was not an issue for me.

Think some of my major symptoms are actually coming from vestibular system because when all this started I've got neuritis in my left ear (and numbness in whole left side of face).

That is interesting and I am glad that you discovered that there was a connection between vestibular issues and your symptoms.

I remeasured CellTrend and it's even higher, a1 to 43 and b2 to 43, but M4 dropped from 48 to 14. Weird.

I will be re-testing Cell Trend on Tues (to compare with my 2016 pre-treatment levels) and will let you know what my results are. I got my Mayo results back and wrote about them yesterday in my Rituximab thread (and am going to post another update in that thread b/c I got to hear my doctor's thoughts on the results and tell him my theories).

Hope you're still well!

I am still in what I am calling "remission" (for lack of a better word) but am not at all confident it is permanent unless it maintains itself once I stop Rituximab. My next infusion (first maintenance infusion) will be in either Nov or Dec.

 

[pibee]

I am still in what I am calling "remission" (for lack of a better word) but am not at all confident it is permanent unless it maintains itself once I stop Rituximab. My next infusion (first maintenance infusion) will be in either Nov or Dec.

Glad you're in remission ! is there a plan to eventually stop Rituximab in your case? I never read on treatments past 1 year, I just assumed it is continued (even if it's only maintenance dose) which is a problem with pregnancy. :-/

As for vestibular system, it can still be autoimmune, it is most likely in my case from all I read on vestibular disorders.
I was never tested for this, not sure how tests are reliable on catching subtle vestibular issues that cause neurocogntive problems.
What is my fear is that cranial nerves are not really repearable much. It did improve somewhat with antibiotics for me but I def still have neuropathy.

 

[Gingergrrl]

Glad you're in remission ! is there a plan to eventually stop Rituximab in your case? I never read on treatments past 1 year, I just assumed it is continued (even if it's only maintenance dose) which is a problem with pregnancy. :-/

Yes, I will definitely stop Rituximab at some point in the future and do not plan to do it for the rest of my life. I finished the six Ritux infusions in Aug (which took exactly one year) and will now be doing maintenance infusions. My first maintenance infusion will be in Nov or Dec (with the date to be determined pending B-Cell levels and if I have any return of symptoms). I will be losing my secondary insurance in 2019 (long story) but that is another factor why my first maintenance infusion will not be later than Dec (but it would not have been later than Dec anyway for clinical reasons). I finished IVIG in July and have had no return of symptoms.

As for vestibular system, it can still be autoimmune, it is most likely in my case from all I read on vestibular disorders. I was never tested for this, not sure how tests are reliable on catching subtle vestibular issues that cause neurocogntive problems. What is my fear is that cranial nerves are not really repearable much. It did improve somewhat with antibiotics for me but I def still have neuropathy.

I don't know anything about this issue but am hoping that you can get the appropriate tests (and treatment?) to repair the vestibular or cranial nerves.

 

[Wayne]

What is my fear is that cranial nerves are not really repearable much.

Hi @pibee,

I feel my cranial nerves were impinged for years (decades) from a whiplash injury as a teenager. When I had a specialized upper cervical adjustment done, my cranial nerve(s) function improved. If you'd be interested in reading a bit more on my experience, you can check out THIS POST I made on AtlasProfilax. -- Best!

P.S. The post I linked to is fairly long. Below is the segment on cranial nerves...

Here’s what I believe happened. The 12 major cranial nerves exit the brainstem through the opening in the atlas. If the atlas is out of alignment, these nerves can become impinged, and nerve flow to the rest of the body is inhibited. The vagus nerve is the longest of the cranial nerves, traversing through the TMJ, through the thyroid, the heart, stomach, GI system, and ending in the colon. If these organs/areas aren’t receiving enough nerve energy because of a crimped vagus nerve, they’re not going function properly or efficiently.

Here’s my theory as to why some people notice significant improvements from AP, and others don’t. — The opening in the atlas through which the cranial nerves go through is different in size from one person to the next. If the opening is large, the atlas can be out of alignment by quite a bit without impinging on the cranial nerves. If the opening is small, only a small misalignment can cause significant cranial nerve dysfunction. — A former NFL football player was temporarily paralyzed from a rather insignificant blow, and it was determined that the opening in his atlas was much smaller than normal, which significantly raised his potential for a serious injury. He promptly retired.

I feel certain most, if not all of my cranial nerves became impinged from a serious head injury/whiplash I experienced at age 15, which corresponded with the decline in my overall health. I am even more certain that at least my vagus nerve was majorly impacted. To have all this pressure relieved from a single treatment felt almost miraculous to me. I can easily see why others wouldn’t have a similar experience, because even if they had a seriously misaligned atlas, they may not have had seriously crimped nerves. The following is a list of improvements I jotted down a few months after receiving my AP treatment in the summer of 2007:​

 

[sb4]

Hi @pibee,

I feel my cranial nerves were impinged for years (decades) from a whiplash injury as a teenager. When I had a specialized upper cervical adjustment done, my cranial nerve(s) function improved. If you'd be interested in reading a bit more on my experience, you can check out THIS POST I made on AtlasProfilax. -- Best!

P.S. The post I linked to is fairly long. Below is the segment on cranial nerves...

Here’s what I believe happened. The 12 major cranial nerves exit the brainstem through the opening in the atlas. If the atlas is out of alignment, these nerves can become impinged, and nerve flow to the rest of the body is inhibited. The vagus nerve is the longest of the cranial nerves, traversing through the TMJ, through the thyroid, the heart, stomach, GI system, and ending in the colon. If these organs/areas aren’t receiving enough nerve energy because of a crimped vagus nerve, they’re not going function properly or efficiently.

Here’s my theory as to why some people notice significant improvements from AP, and others don’t. — The opening in the atlas through which the cranial nerves go through is different in size from one person to the next. If the opening is large, the atlas can be out of alignment by quite a bit without impinging on the cranial nerves. If the opening is small, only a small alignment can cause significant cranial nerve dysfunction. — A former NFL football player was temporarily paralyzed from a rather insignificant blow, and it was determined that the opening in his atlas was much smaller than normal, which significantly raised his potential for a serious injury. He promptly retired.

I feel certain most, if not all of my cranial nerves became impinged from a serious head injury/whiplash I experienced at age 15, which corresponded with the decline in my overall health. I am even more certain that at least my vagus nerve was majorly impacted. To have all this pressure relieved from a single treatment felt almost miraculous to me. I can easily see why others wouldn’t have a similar experience, because even if they had a seriously misaligned atlas, they may not have had seriously crimped nerves. The following is a list of improvements I jotted down a few months after receiving my AP treatment in the summer of 2007:​

Hey Wayne, if you have not read through this thread I HIGHLY recommend it. A guy got all his CFS removed by discovering he had CCI and correcting it with surgery. CCI can be caused by whiplash.

 

[talkinghead]

Can anybody post the complete panel of neuro antibodies? I’m seeing a new neurologist and want to ask about this.
Sorry if it was mentioned before, but I’m not in a state to read the whole thread.

Thank you.

 

[Learner1]

Heres a list, compiled by members, that their doctors have ordered and which have been found in patients. I have no idea if its complete.

 

[talkinghead]

Does anybody know if/where can I get this testing done privately in Europe?

I’m interested in equivalents of mayo autoimmune encephalitis and dysautonomia panels.

I was told there is no chance I’m getting something like this thru public health care in my country and even if I could, I doubt they can do all of those. Considering flying to China, but would prefer Europe if it can be done and it’s not super expensive.

 

[vision blue]

Does anyone remember if the OP tested positive for anti nmda antibodies and whether it was done at an "accepted" lab like Mayo or an alternative lab like the one in germany? So farm my mayo panels have been "normal" but i am suspicious was handled properly. Plus i think I generally don't produce much antibodies. So much of what the OP describes fits with me- though of course many posts in many threads on this forum also do...Sigh.

 

[MEMum]

My daughter tested positive for antibodies to the pyruvate kinase receptors in the basal ganglia.

 

[crypt0cu1t]

My daughter tested positive for antibodies to the pyruvate kinase receptors in the basal ganglia.

What test was done to find these?

 

[Gingergrrl]

Does anyone remember if the OP tested positive for anti nmda antibodies and whether it was done at an "accepted" lab like Mayo or an alternative lab like the one in germany?

@vision blue You asked about the OP, so I went back to his first post in this thread and this is what he said:

flew back to the UK (I'm a Brit living in asia) got abused and pushed aside by the NHS as all their "standard" tests came back normal, after 6 months of suffering more damage I finally went back to China and a smart neuro immune specialist tested me for lots of different neuronal antibodies via immune fluorescent staining, the blood staining test came back strong for anti NMDA antibodies and they were found in my CSF, my CSF syndrome sharing nearly all your symptoms was caused by A persistent mild form of anti NMDA antibodies attacking receptors through out my nervous system, China being Cheap and willing with experimental health care allowed me access to all forms of immune modulation treatments.

Hope this helps and from what he shared, he tested positive for NMDA autoantibodies, in both blood and CSF fluid, by testing that was done in China.

So farm my mayo panels have been "normal" but i am suspicious was handled properly.

I was curious why you felt your Mayo panels were handled improperly? I have done some Mayo panels but always felt that their lab was rock solid (so now I am curious)!

 

[Really]

is this test good for nervous system antibodies?

https://www.joincyrex.com/the-cyrex...logical-autoimmune-reactivity-screen-expanded

 

[talkinghead]

Could someone who got contact to doctor Xiang Jun Chen from @SK2018 send it to me? @SK2018 is not active lately.

I've found this https://aealliance.org/clinician/xiang-jun-chen-md，phd/ but there is no email address.

 

[tiredowl]

What would happen if someone with anti-nmda antibodies took sarcosine? It seems it worfk on the NMDA receptors... would the fatigue lift?

 

[vision blue]

@vision blue
I was curious why you felt your Mayo panels were handled improperly? I have done some Mayo panels but always felt that their lab was rock solid (so now I am curious)!

Not to worrry- improper handling on my end, not the Mayo end. Use a very busy satellite lab and have seen blood lying around at the wrong temperatures. They rarely ge a chance to spin them within the time frames required. In addition, for sendouts, they then first go to the central lab, before finally leaving for Mayo. I had a test for assorted immunglobulins send out at ARUP (who i also trust on their end) whose values were so low i suspected improper handling. On the Mayo test though they did note they could see non-specific anti nuclear antibodies, so perhaps if the ANNAs were present, they should have seen that too. Probably more likely , i just don't have antiboides that lie outside the usual reference ranges- doesn't meant i don't have them - just means they don't show up for me. I find this for alot of tests -unless docs look a the trends in my tasts over time, or take ratios, usually i'm the picture of health on blood work. it's actually quite funny.

 

[vision blue]

I logged on to this thread because i got email yesterday about sadly the OP not making it- but now whilst on here I cannot find that post. Am I somehow on the wrong page? looks like this is the latest, but no posts after jan 2019.