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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Not sure about Jen's yet, but mine did.
My EBV titers (IgM and IgG), mycoplasma pneumonia (IgM and IgG), and parvovirus (IgM and IgG) were chronically elevated during my entire time with ME/POTS/PEM.
After I corrected my brainstem compression with a halo, and then with fusion surgery, these values all normalized. (POTS, MCAS, and PEM also went away completely.)
Good question. Jeff have you tried to induce PEM? I know that sounds insane but I was curious.
How far have you tested your recovery? Does that make sense?
Hi @jeff_w and @JenB Thank you both for sharing your downs & now especially your ups!! Thank you for indulging us in these question/answers. These threads have been a huge eye opener to the possibility of CCI & related issues.After I corrected my brainstem compression with a halo, and then with fusion surgery, these values all normalized. (POTS, MCAS, and PEM also went away completely.)
Wow...Just wow. I can't even imagine. Thanks for answering. I'm still trying to wrap my head around it all. It's all so crazy.Not insane at all! Does pumping iron twice a week and doing cardio count?
It makes a lot of sense, and that's what I'm doing now. I work out at the gym, and I have no PEM whatsoever. Instead of PEM, I feel that sweet familiar muscle burn that I had prior to getting sick. Vigorous activity actually energizes me now.
Were you ever able to have Dr Davis' stress test? The one that will be used to diagnose ME?
What also puzzles me is why weren't symptoms more apparent in youth, or in teenage years?
The other thing all this raises is the possibility that CFS/ME is an end point of a series of different problems in the body?
I really find it quite astonishing that you had the symptoms of PEM ; I saw your excellent film, and it quite looked like CFS/ME to me.
Absolutely fantastic @JenB! Congratulations! It was a brave thing to go in for the surgery, but the decision seems to have paid major dividends.
Your success is definitely going to help open up new treatment possibilities for other patients too: one CCI/AAI patient (@jeff_w) recovering through fusion surgery could have just been an idiosyncratic response; but now with two patients recovering, it's starting to look like there's something to Jeff's original CCI/AAI theory and discovery.
Did you have headaches regularly? Did you have daily pain behind the eyes? Was your gait a bit odd?
This of course raises other issues: how to get at the root of the problem? Where does one go? If it isn't tethered cord, and is other things, how in heaven's does one find that needle in the hay stack.
Wow! That's incredible for you!! Congratulations! This tells me to NEVER give up on remission.
Do you have an idea of how the viral infection you had could have triggered/caused your CCI, or if you think it did?
In this post I speculated that connective-tissue degrading enzymes, a set of enzymes that viral infections may induce, might possibly explain the weakened connective tissue that leads to CCI/AAI.
Coxsackievirus B is also known to chronically infect fibroblast cells. These are the cells which male the collagen and elastin of connective tissue.
@JenB
When you had issues post thyroid surgery, I realized that my neck issues started immediately after 6 months of PT for frozen shoulder which involved some painful neck exercises. Since then I have not been able to lie on my back - I get an excruciating occipital headache with pain behind my eyes and the longer I hold that position the more disoriented I become. Since it's positional, I just avoid that position as much as possible and sleep on my right side, which is now the only sleeping position I tolerate.
But I fear I am actually not well enough to pursue this, and possibly too fragile for surgery.
Hi, @JenB , I do have a couple questions. What was your “sun allergy” like symptom wise? How did that impact your traveling in the desert, when you decided to try hard core mold avoidance ? Did you tolerate the sun in Moab okay?
Second question: when you discuss your mcas as related to the surgery, do you think that there’s some environmental factor upstream of both mcas and connective tissue issues, since you didn’t have congenital cci or ehlers Danilo’s? I understand if you don’t want to speculate too much publicly on this, but this is a forum where we all love to do wild speculation
This is so incredible to read! I'm so happy for you Jen.
Have you ever noticed snapping or popping noises in you neck or any joints?
are there case where surgery is done and the result is not really positive?
Hi Jen
Has PEM completely resolved? I realise it is not that long since your surgery and you must still be building up your strength. However if you do a lot of steps or stand for long time or have a particularly busy day do you feel tired and recover in a normal healthy way?
these values all normalized
Is it because the immune system was working normally, killing any and all virus? OR is it because the broken immune system was mistakenly making viral antibodies?
For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission.
View attachment 32740
Medium post: https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71
Reddit discussion:
For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission.
I have pretty severe stenosis at c-4-c7 too - I always assumed those levels were too far down to cause any problems other than the numbness I feel in my index finger. May I ask, what symptoms do you and your doc attribute to your stenosis? I am scared of having the surgery tooThis is the second time you have given me hope @JenB . Thank you!
I have had an MRI and I have been recommended surgery. Mine are more like @toyfoof 's with spinal stenosis and herniated disks 3-7 I think. With Degenerative disk disease. I am terrified of surgery. I am leaning into it more and more. I have lived in my bed for 2 years and have been very disabled since spinal meningitis in 2011.
Best of luck to you!