My ME is in remission

[jesse's mom]

@Rachel Riggs WE are thinking my walking, blood pressure and severe pain are from this. I also have mild seizures when I am in PEM. I think it is all related.

I am also in a bit of a dead zone for good neurosurgeons. Just today I have begun leaning into looking into the who and where. I do not feel just 'NO' at the thought of beginning this journey. The fear of it not working, how do I get the after surgery support? The thought of travelling for surgery is daunting. I may have no choice if I ever want a life again.

By the way I am in my mid '50s also.

 

[Rachel Riggs]

@JenB your TED talk led me to finally get my diagnosis (I remember frantically googling Myalgic Encephalomyelitis while listening on the TED Radio Hour on NPR) . . . Unrest led to my family understanding and beginning to advocate for me (I'd never seen my boyfriend cry until we watched Unrest together) . . . and your and @jeff_w 's stories of CCI surgery led me to have my neck imaged and discover that, while I don't have CCI, I have severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected and likely affecting my brain.

I've been doing conservative treatment for my neck: very basic physical therapy exercises, daily cervical traction, myofascial release therapy, and heat therapy. My symptoms of PEM and head and neck pain are starting to improve.

Thank you SO MUCH for sharing your story, @JenB and @jeff_w . And for the work and research that have led to your hypothesis which rings so true to me. And I am SO SO HAPPY to read the words "my ME is in remission." Those words are powerful and hopeful! I'm so optimistic that @StarChild56 and @mattie will be saying them too!

@toyfoof I'm relieved to hear that a more conservative approach like yours may sometimes be enough. How would I pursue PT, heat and myofacial therapy when it's critical to find the right practitioner or there can be more harm than good? My neck issues all began thanks to PT on a frozen shoulder! I appreciate any of the therapy specifics you can share!

 

[jesse's mom]

I forgot that I am going to do aqua physical therapy to help with strength, balance and endurance later this summer. No massage or a physical therapy that will move me through the arms too much.

This will be my second round, the last time was about 5 years ago. It did help some.

 

[Hip]

@jeff_w and @JenB, do you have any thoughts or speculations regarding the timescales of your recoveries from ME/CFS after surgery for CCI/AAI, and the actual mechanism that may have led to ME/CFS recovery? I've got a tentative theory:

If I remember correctly, @jeff_w's POTS fully resolved pretty much straight away after surgery, the MCAS almost fully resolved, and the ME/CFS symptoms took a few weeks to resolve (taking a little longer in part just because of the normal post-surgical fatigue). And then the MCAS fully resolved after a second surgery for tethered cord.

@JenB's POTS also fully resolved straight away after surgery I believe, but the improvements in ME/CFS symptoms occurred gradually and incrementally over a 6 month period since the surgery.



My thoughts are these: since POTS cleared up immediately, and given that POTS is an autonomic nervous system disease, it seems likely that the POTS was being caused by mechanical brainstem compression, impeding the autonomic nerve signals. So as soon as this mechanical impediment was corrected, POTS just instantly disappeared. Thus one immediate result of the surgery appears to be the restoration of normal autonomic functioning.

But why did resolution of the ME/CFS take a little longer? In @jeff_w's case a few weeks, and in @JenB's case 6 months.

My tentative theory that your ME/CFS recoveries might actually have been due to the slower process of viral clearance, which was facilitated by the restoration of autonomic functioning. There are studies which show that both the sympathetic and parasympathetic branches of the autonomic nervous system help control the immune system (see for example this paper or this paper).

Thus once autonomic functioning was restored by the surgery, this may have led to an improved immune response, that was better able to tackle viral infection. But presumably it would take some time for the immune system to clear the viral infections, so this could explain why it took several weeks to several months for the ME/CFS to clear up after surgery, even though POTS cleared up immediately.

I am right in thinking that in both cases, you had classic viral ME/CFS: starting after a viral infection, and exhibiting chronic elevated IgG viral antibody levels? So you might expect that ME/CFS will not resolve until these underlying viral infections are cleared.

In @jeff_w's case, elevated IgG antibody levels returned to normal some time after surgery, suggesting viral clearance. I suspect that if @JenB were retested, antibody levels would also have returned to normal.

I believe @JenB had elevated antibodies to coxsackievirus B4, and @jeff_w elevated antibodies to Epstein-Barr virus.



The above tentative theory is also corroborated by @jeff_w's unfortunate incident with a physical therapist who twisted Jeff's neck and damaged the fusion hardware (requiring further surgery to fix): when this damage occurred, Jeff's POTS instantly returned, suggesting once again the mechanical pressure from brainstem compression on the autonomic nerves produced autonomic dysfunction.

 

[junkcrap50]

I wonder if Ron Davis should do small pilot study or case study of people pre- and post- CCI surgery. Doing the nanoneedle test, metabolomics, miRNA, Seahorse, and others before and after CCI surgery. Perhaps this will find the originating source of the exosomes.

EDIT to add: Since there are already ME/CFS patients who have diagnosed CCI and are pursuing, if not have scheduled, their CCI surgery, taking samples should not be difficult or expensive. And funding could be allocated if there is dramatic response such as Jen's.

 

[perrier]

I wonder if Ron Davis should do small pilot study or case study of people pre- and post- CCI surgery. Doing the nanoneedle test, metabolomics, miRNA, Seahorse, and others before and after CCI surgery. Perhaps this will find the originating source of the exosomes.

this strikes me as urgent

 

[junkcrap50]

My tentative theory that your ME/CFS recoveries might actually have been due to the slower process of viral clearance, which was facilitated by the restoration of autonomic functioning.

The opposite/inverse could also be true. That pre-surgury, the immune system was broken and mistakenly producing viral antibodies, inflammatory signaling molecules, byproducts from broken pathways, etc. Causing widespread dysfunction. And that once the brainstem and autonomic nervous system was corrected/restored, it took a while for correct immune signals and their effects to be widely seen. An argument in support of this is MCAS immediately resolving in Jeff's case.

 

[godlovesatrier]

The opposite/inverse could also be true. That pre-surgury, the immune system was broken and mistakenly producing viral antibodies, inflammatory signaling molecules, byproducts from broken pathways, etc. Causing widespread dysfunction. And that once the brainstem and autonomic nervous system was corrected/restored, it took a while for correct immune signals and their effects to be widely seen. An argument in support of this is MCAS immediately resolving in Jeff's case.

It would also make sense as to why immune modulators like ginseng astragalus andrographis and cordyceps make me feel infinitely better. But this isn't true for everyone. Although I have a theory that if people find the right immune modulators for them it can help a lot and maybe even clear the immune dysfunction and the viral load. But I'm not sure if we can say thst everyone is suffering from the same issue. I'm convinced my issue is genetic and there is a gene - as my aunt has the same severity of ME as I do.
I also know people who get infected with ebv who recover with anti virals alone within 18 months. Whereas someone else could take the anti virals and it has no effect.

 

[frozenborderline]

I wonder if Ron Davis should do small pilot study or case study of people pre- and post- CCI surgery. Doing the nanoneedle test, metabolomics, miRNA, Seahorse, and others before and after CCI surgery. Perhaps this will find the originating source of the exosomes.

EDIT to add: Since there are already ME/CFS patients who have diagnosed CCI and are pursuing, if not have scheduled, their CCI surgery, taking samples should not be difficult or expensive. And funding could be allocated if there is dramatic response such as Jen's.

I know that Ron davis is already aware of this paradigm, since he answered a question re: cci at a panel discussion at Hampshire colleee. Unfortunately the college has been slow to release the video (this talk occurred in February ). If anyone is interested in contacting them, please let me know by private message.

 

[frozenborderline]

The opposite/inverse could also be true. That pre-surgury, the immune system was broken and mistakenly producing viral antibodies, inflammatory signaling molecules, byproducts from broken pathways, etc. Causing widespread dysfunction. And that once the brainstem and autonomic nervous system was corrected/restored, it took a while for correct immune signals and their effects to be widely seen. An argument in support of this is MCAS immediately resolving in Jeff's case.

I reject the idea that mcas is based solely on incorrect immune functioning. Mcas is most likely due to an innate immune system responding to intense amount of toxins by going haywire. The toxins that cause this are still toxic even if the immune system is “overreacting”

 

[junkcrap50]

I reject the idea that mcas is based solely on incorrect immune functioning. Mcas is most likely due to an innate immune system responding to intense amount of toxins by going haywire. The toxins that cause this are still toxic even if the immune system is “overreacting”

Emphasis mine. Yes I agree the toxins which MCAS respond to are still toxic and still harmful towards the body. But the response is not a normal response with MCAS. Why can so many people tolerate various benign drugs, tolerate laundry soap, be in the same room with someone with perfume, etc. but someone with MCAS can go into a deathly shock? The fundamental mechanism of MCAS may be normal, but it's intensity of response and triggers are abnormal and incorrect, indicating abnormal immune functioning.

 

[frozenborderline]

Emphasis mine. Yes I agree the toxins which MCAS respond to are still toxic and still harmful towards the body. But the response is not a normal response with MCAS. Why can so many people tolerate various benign drugs, tolerate laundry soap, be in the same room with someone with perfume, etc. but someone with MCAS can go into a deathly shock? The fundamental mechanism of MCAS may be normal, but it's intensity of response and triggers are abnormal and incorrect, indicating abnormal immune functioning.

Have you read any of antifragile by nassim Taleb? The overreaction by the immune system is not unintelligent. Nature is always excessive and redundant. When the immune system is primed by exposure to something toxic , it “overreacts” on subsequent exposures as a failsafe mechanism I believe , so that the offending substance will be cleared more easily.
But yes, the question is still why some people tolerate stuff more than others.

Obviously anaphylaxis is worse for you than the effects of laundry detergent smell or whatever, but there are many aspects of mcas that are not anaphylaxis and involve “sickness behavior” over long periods of time that is probably evolutionarily supposed to be telling people “get out” of whatever toxic exposure people are in.

I do not think that in my paradigm all triggers are equal. I think that toxic exposure to one or a few particularly toxic and immunogenic substances sets off this overreaction of the immune system to multiple substances some of which may be benign. But the original exposure that triggers the mcas is not benign! Many of these substances also affect the health of people who do not seem to overrqct to them. Mycotoxins may lower the average persons cognitive function and cause depressive episodes and mild fatigue even if it does not cause CFS or anaphylaxis. The idea that we are overreacting because we are susceptible somehow is problematic. I suspect that CFS and mcas is a protective adaptation and that these toxins cause fatal issues in other people that are not conclusively linked to environmental causes because that is not in standard medicines paradigm. So, a CFS person may be protected from oxidative strsss from toxic exposure because of their hypometabolism, whereas the average person may randomly get a heart attack from the same exposure after years, without having connected it to the environment.

 

[junkcrap50]

@debored13 fair enough, but we've gone off topic now.

 

[Rufous McKinney]

tolerate laundry soap, be in the same room with someone with perfume

While of course we would rather NOT react to all these things: to me, it seems healthy to REACT to chemicals people lace their bodies in. It seems adaptive to: recognize chemicals that "aren't natural" and flee the area.

 

[JenB]

@jeff_w and @JenB, do you have any thoughts or speculations regarding the timescales of your recoveries from ME/CFS after surgery for CCI/AAI, and the actual mechanism that may have led to ME/CFS recovery?

I need to write more about this later but briefly my PEM and POTS resolved as soon as I woke up from anesthesia (after the CCI surgery). I knew they were gone. I especially knew they were gone when I got up and walked around the ICU and felt an endorphin rush for the first time in eight years. I knew a little more when I could do very basic PT, day in day out, and sustain (and build on) that activity. But knowing and knowing are two different things. My symptoms came back with post-surgical swelling (and went and came and went again). My mast cell flare and drug interactions added a whole other layer of complexity. I didn't feel like I could say I didn't have PEM anymore when I couldn't get out of bed b/c of the surgery. It took getting to a point where I could walk thousands of steps per day and really push myself and not crash.

What has lingered for me is the MCAS. I think in my case, (at the beginning, mild) MCAS or chronic inflammation preceded the whole ME kit and kaboodle. But the MCAS is improving.

 

[Hip]

The opposite/inverse could also be true. That pre-surgury, the immune system was broken and mistakenly producing viral antibodies, inflammatory signaling molecules, byproducts from broken pathways, etc.

Yes antibodies are an indirect measure of infection. It would be interesting if a patient with enterovirus ME/CFS who was planning CCI/AAI surgery would undergo Dr Chia's stomach biopsy testing for enterovirus before and after, as this gives direct indication of infection.


I am not averse to the idea that it could be both a dysfunctional immune system AND a chronic low-level viral infection which together are causing ME/CFS.

Just as with the MCAS discussion above, ME/CFS might appear as a result of both an ongoing low-level infection, as well as an exaggerated immune response to that infection.

 

[mymichelina]

I would like to ask if you believe that having a 39 degree S curved Scoliosis could cause the pressure in the neck and brain? My brain scans show white matter in the Pons and Midbrain with no definitive diagnosis. They mention possible strokes.??

Thank you!!

 

[toyfoof]

@toyfoof I'm relieved to hear that a more conservative approach like yours may sometimes be enough. How would I pursue PT, heat and myofacial therapy when it's critical to find the right practitioner or there can be more harm than good? My neck issues all began thanks to PT on a frozen shoulder! I appreciate any of the therapy specifics you can share!

Hi @Rachel Riggs I wrote a post in my old thread about my MRI with an update on the therapies I'm currently doing: https://forums.phoenixrising.me/thr...-me-cfs-experiences.62457/page-4#post-2205579

I agree that it's critical to find the right practitioner, and I'm not sure how to accomplish this beyond research, interviews, and crossed fingers. I lucked into some local practitioners who came recommended by people I trust and who understand ME/CFS and work carefully with me on it. I think the most important thing is that whoever you go to, even if they don't know about ME/CFS now, is willing to listen to you and learn about it and monitor your PEM very closely. Anyone who advises you to push on is the not the right fit.

 

[Rachel Riggs]

Hi @Rachel Riggs I wrote a post in my old thread about my MRI with an update on the therapies I'm currently doing: https://forums.phoenixrising.me/thr...-me-cfs-experiences.62457/page-4#post-2205579

I agree that it's critical to find the right practitioner, and I'm not sure how to accomplish this beyond research, interviews, and crossed fingers. I lucked into some local practitioners who came recommended by people I trust and who understand ME/CFS and work carefully with me on it. I think the most important thing is that whoever you go to, even if they don't know about ME/CFS now, is willing to listen to you and learn about it and monitor your PEM very closely. Anyone who advises you to push on is the not the right fit.

Thank you, @toyfoof !!

 

[rel8ted]

@Rachel Riggs WE are thinking my walking, blood pressure and severe pain are from this. I also have mild seizures when I am in PEM. I think it is all related.

I am also in a bit of a dead zone for good neurosurgeons. Just today I have begun leaning into looking into the who and where. I do not feel just 'NO' at the thought of beginning this journey. The fear of it not working, how do I get the after surgery support? The thought of travelling for surgery is daunting. I may have no choice if I ever want a life again.

By the way I am in my mid '50s also.

The travel would be far less daunting than the results of surgery performed by someone who does not specialize in this this condition. Please, if you are seriously considering this procedure, keep that in mind.