Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[Muddy]

The creator of this thread died last week , he tried a few different treatments and I think was going to try or in the process of trying rituxmab . His name was Shawn Kragen . All of this cfs/ME/encephalitis stuff started for him after he caught HSV 2. He firmly believed that conventional western medicine could cure him and sought treatments in China and Germany . He had decompression surgery done , tried IVIG, tried steroids , tried a treatment that completely wipes out T and B cells. He kept declining . In my opinion all this stuff made him worse .From what I was told he received very poor care during his last hospital stay in Germany and it contributed to his passing . RIP

 

[Gingergrrl]

The creator of this thread died last week , he tried a few different treatments and I think was going to try or in the process of trying rituxmab . His name was Shawn Kragen .

@Muddy There is a memorial thread for Shawn on PR that was started last night. I am not sure if you have seen it yet and here is the link:

https://forums.phoenixrising.me/threads/in-memory-of-sk2018.75738/

I have been very sad about this all day and wish I had something adequate to say. It is very sad and may he rest in peace and suffer no more.

 

[Muddy]

Didn’t see that , and yes it’s a very sad situation . I talked to him quite a bit over the last few years . He was a good dude

 

[Gingergrrl]

Didn’t see that , and yes it’s a very sad situation . I talked to him quite a bit over the last few years . He was a good dude

He was a good dude and helped a lot of people while sick himself. He did his first Rituximab infusion only about 1-2 months before I started mine (in 2017) and he and I talked a lot about our treatments at that time (even though we had different autoantibodies and diagnoses). He was so helpful to me and I admired the lengths that he searched and traveled to find answers. I had so hoped for a good outcome for him.

 

[Rlman]

Thanks for letting us know @Muddy and @Gingergrrl , such tragic news...

 

[Muddy]

He was a good dude and helped a lot of people while sick himself. He did his first Rituximab infusion only about 1-2 months before I started mine (in 2017) and he and I talked a lot about our treatments at that time (even though we had different autoantibodies and diagnoses). He was so helpful to me and I admired the lengths that he searched and traveled to find answers. I had so hoped for a good outcome for him.

This all started for me after catching hsv 1.

The best advice I can give you is if you want to shift from th2 to th1 the guidelines are

Limiting Stress (physical and psychological, and overstimulation of the senses like large crowds , watching tv or phone etc) think positive and strong and your immune system will follow suit .

Hormone fluctuations- greatly limiting sex and masterbation

Inflammtory triggers (foods, toxins , environmental stuff like pollen , mold , emf etc ) low histamine diet , getting plenty of potassium (butternut squash is great choice ) . No high fiber foods. Low fat and try to stick to low fodmap. Getting gallbladder functioning properly is huge aspect to all of this. For me high carb . Moderate protein and low fat work best

And lastly low intensity strength training which is the most important of all IMO, it will balance nervous system which will make viruses go dormant .

Following these things has completely stopped my muscle fasiculations, motor function is much better , brain fog better , my vision is normal again , my muscle spasms have greatly reduced , my energy is pretty good and my breathing isn’t labored or shallow anymore . My bloating is gone and stomach is flat . Dizziness is gone . Balance is good .Burning sensation in extremities is gone , pressure in back of head is gone , no more irrational fear or paranoia . No more ear worm (constant loop of song lyrics in head , 24-7) mclonus jerking is gone , voice is much stronger and trouble swallowing is gone , acid reflux is much better .My social anxiety is much better as well . My thrush is almost gone and a bunch of other good things are happening .

When it comes to viruses it’s all about stress, hormones and inflammatory triggers.

 

[Inara]

From what I was told he received very poor care during his last hospital stay in Germany and it contributed to his passing . RIP

I am furious.
I live in Germany. There should be a formal complaint to the hospital and authorities if his death is due to mistreatment. If I can help with anything (e.g. language, regulations), please PM me.

I feel sadness with his family and friends.

 

[Sparrowhawk]

Following these things has completely stopped my muscle fasiculations, motor function is much better , brain fog better , my vision is normal again , my muscle spasms have greatly reduced , my energy is pretty good and my breathing isn’t labored or shallow anymore . My bloating is gone and stomach is flat . Dizziness is gone . Balance is good .Burning sensation in extremities is gone , pressure in back of head is gone , no more irrational fear or paranoia . No more ear worm (constant loop of song lyrics in head , 24-7) mclonus jerking is gone , voice is much stronger and trouble swallowing is gone , acid reflux is much better .My social anxiety is much better as well . My thrush is almost gone and a bunch of other good things are happening .

Really great advice you have provided, and wonderful to hear your improvements, especially on this solemn day.

 

[Daffodil]

i just came on this thread for support and saw that the person who started it, passed away. this is incredibly sad. i cant believe he did spine surgery, rituximab - so much more than most of us have been able to do, and still kept declining?! i have no words.

will there ever be an end to this nightmare??

 

[Gingergrrl]

i cant believe he did spine surgery, rituximab - so much more than most of us have been able to do, and still kept declining?!

I don't believe that Shawn (SK2018) ever had spine surgery unless I am totally mistaken. He did do Rituximab in 2017 and many other ongoing treatments for AE (autoimmune encephalitis).

 

[Daffodil]

@Gingergrrl thank you for letting me know. someone mentioned above that he had decompression surgery

 

[Muddy]

He had decompression surgery , it did nothing . Shawn’s condition started after he caught HSV 2. Virus went systemic . He had blisters that tested positive for hsv 2 but even years after exposure he tested negative for IGG antibodies to the virus (something that is common with that particular virus ... ). He tested positive for the other viruses he had though which is weird and kinda rule out an underlying prior immunodeficiency producing immunoglobulin.

Cfs is systemic viral infection , the neuro infection is chronic because of the low grade inflammatory response to the infection in the organs . Boost immune function and organ inflammation increases cause poorer digestion resulting in immunosuppression . Eventually if you clear the organs of infection your digestion will be good and when that happens immune system will kick in and neuro infection will go acute . Woman have a much harder time beating this than men because of estrogen . Estrogen is suppresses immune response to viruses . Viral infection of the liver actually causes estrogen to be raised even more because inflammed liver and gallbladder can’t clear out hormones properly .

You will never get better laying on a couch or in bed all day , that I’m sure of .

 

[Muddy]

To put it very simply when you exercise you boost immune response to infection which makes symptoms worse, but it’s the only way to clear it . Balancing nervous system with exercise is huge aspect to recovery

 

[roller]

The creator of this thread died last week , he tried a few different treatments and I think was going to try or in the process of trying rituxmab . His name was Shawn Kragen

From what I was told he received very poor care during his last hospital stay in Germany and it contributed to his passing . RIP

what treatment was he seeking in Germany ?
wondering, why he chose this particular place..
do you know, @Muddy ?

 

[Daffodil]

To put it very simply when you exercise you boost immune response to infection which makes symptoms worse, but it’s the only way to clear it . Balancing nervous system with exercise is huge aspect to recovery

may i ask what kind of decompression surgery he had? do you mean for craniocervical instability? did he go one of the specialists they talk about on this board?
was shawn from germany?

 

[MEPatient345]

This is so tragic. Another person lost.

You will never get better laying on a couch or in bed all day , that I’m sure of .

You look relatively new to the forum, but just FYI this is incredibly dismissive to people who must be “laying on a couch or in bed all day” and have no other option but to do so. Many of us have tried what you recommend and could not benefit from it or maintain it. Be sensitive to that.
Also, not to point out the obvious but we don’t know what ME/CFS is caused by. It’s likely to be multiple things.

 

[Gingergrrl]

He had decompression surgery , it did nothing .

I did not realize that he had this surgery. Do you know what it was for? Did he have CCI in addition to AE or was it for a different reason?

may i ask what kind of decompression surgery he had? do you mean for craniocervical instability? did he go one of the specialists they talk about on this board? was shawn from germany?

I am trying to figure that out, too @Daffodil and am confused now. I do not know where he had the surgery or why he was in the hospital in Germany. He was from the UK but also traveled to China to get treatments. The last I spoke with him via PM was in July 2018 and he seemed to be doing okay at that time. I wish we knew what happened (as much as his family is able to share).

 

[lafarfelue]

Absolutely devastating. RIP Shawn. Nothing I say will convey the sadness and uselessness I feel at our and the world's loss.

re: decompression surgery

Do you know what it was for? Did he have CCI in addition to AE or was it for a different reason?

It would be good to have some clarity with this, to avoid possible alarm. There are many different types of surgery, obviously, so we should really be as clear as possible on what surgery it was and what it specifically aimed to do. It may not have been the fusion for CCI as regularly discussed here/like the kind that (for eg.) Jeff, Jen and Mattie have so far received.

Googling 'decompression surgery' comes up with these definitions/explanations:

"decompression: opening or removal of bone to relieve pressure and pinching of the spinal nerves."

"In medicine, Decompression refers to the removal or repositioning of any structure compressing any other structure. Common examples include decompressive craniectomy, and spinal decompression to relieve pressure on nerve roots."

It does not appear to necessarily be the same as fusion surgery as for CCI.

*edited for formatting*

 

[kms1990]

If I were to try to have prior MRI's reviewed to see if there was any indication of CCI, could anyone help provide me information no how to get that done? One of the best doctors I have ever seen recently emailed me and though it would not be a bad idea to rule it out.

 

[Gingergrrl]

It would be good to have some clarity with this, to avoid possible alarm. There are many different types of surgery, obviously, so we should really be as clear as possible on what surgery it was and what it specifically aimed to do. It may not have been the fusion for CCI as regularly discussed here/like the kind that (for eg.) Jeff, Jen and Mattie have so far received.

Well said and I agree with you that it could have been a totally different surgery for a totally different purpose. We also do not know when or where he had the surgery and we should not speculate without having all the information.