My ME is in remission

ljimbo423

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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.)
Thanks for this post Jeff. This absolutely amazes me! How the brain caused all of these things including high viral titers, MCAS and POTS.

Since the brain is the control center of the entire body though, it makes perfect sense to me, looking at it from that perspective.
 
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jeff_w

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Good question. Jeff have you tried to induce PEM? I know that sounds insane but I was curious.
Not insane at all! Does pumping iron twice a week and doing cardio count? :cool: That's what I do now.

How far have you tested your recovery? Does that make sense?
It makes a lot of sense, and that's what I'm doing. 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.
 
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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.)
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.

Based on your stories I submitted my records & filled all the paperwork to Dr Bolognese. At the time he said that all he required was a supine MRI 1.5 Tesla or higher. No special positions, no other instructions. But after viewing my packet he replied:

“Try cervical traction with your local physical therapist. If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference. If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated.”
This is a bit bewildering bc of the no man’s land that I live in (small town south GA). To find a pt that knows something about hEDS, let alone ME & PEM.
How often is this to be done?
What kind of dramatic results am I to look for?
Would not any gains be obscured by the PEM of just having to be at an appt on a regular basis? (I am mostly housebound/couchbound).
20 yrs severe ME/CFS/FM, POTS. I have always been hypermobile, only recently diagnosed w/hEDS (by a POTS clinic, not a geneticist, 9 out of 9 on Beighton). Also, 6 months before my viral onset I suffered a whiplash.
Thanks for any suggestions on how to proceed from this point!


 

MTpockets

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Not insane at all! Does pumping iron twice a week and doing cardio count? :cool:



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.
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.
 

JenB

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This is a lot, but I'm going to try to answer what I can!

Were you ever able to have Dr Davis' stress test? The one that will be used to diagnose ME?
Unfortunately, no. But there's discussion of having other CCI-diagnosed ME patients have this test before surgery.

What also puzzles me is why weren't symptoms more apparent in youth, or in teenage years?
I don't think anyone knows but it's not uncommon. The idea of developing of being asymptomatic one's whole life and then developing these symptoms after an acute viral infection is not alien to some hEDS doctors I've talked to. They observe this in their hEDS patients. You might have the vulnerability but the disease state doesn't present itself until you have stressors later in life (environmental, infectious, traumatic).

I have to say, though, that as I kid, I always hated running. I loved being active in other ways, though. I also always had trouble with certain kinds of stretching. I wonder if this might not have been signs of a (mild) tethered cord...

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?
Yes. Although for me right now the money is on, "Which part(s) of the brain and how many different ways can they be damaged/distressed and result in identical or near-identical symptoms?"

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.
Because it was.

Absolutely fantastic @JenB! Congratulations! It was a brave thing to go in for the surgery, but the decision seems to have paid major dividends.
I spent weeks, perhaps months, thinking I was a total idiot for having done it. I did not have an easy time of surgery and recovery. I'll write more about that in future posts because I think it is important for folks to understand more re: what to expect. I think the hardest part was having some symptoms come and go throughout the first several months and not knowing whether the surgery and only cured my apnea or had "worked" in a more global sense. It took a long time before I recovered to an extent such that I could trust the recovery.

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.
Peter Rowe's cervical stenosis case series is also striking as well as some of his other talks. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/ Again, I think it may be that a significant proportion of patients have issues referable to the brainstem, but that in some it's structural, in others it might be infectious/inflammatory. This is something we need to find out.

Did you have headaches regularly? Did you have daily pain behind the eyes? Was your gait a bit odd?
I had frequent headaches when I first became bedridden mostly in the form of stabbing occipital pain. I also had pressure behind my eyes for years, especially during bad crashes/flares. I also had problems with my gait at the beginning (clumsiness in my feet and bilateral weakness/numbness/pain in my legs). This all came back with a vengeance after my thyroidectomy.

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.
This isn't the full universe of possibilities but a nice summary of structural issues: https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31549

Note there is some evidence of intracranial hypertension in ME patients: https://www.me-pedia.org/wiki/Intracranial_hypertension

Wow! That's incredible for you!! Congratulations!:):thumbsup::thumbsup: This tells me to NEVER give up on remission.
I gave up. Hoping was dangerous/impossible/too emotionally difficult for me. But yeah, our disease(s) have causes. This means that they can be understood through science and most likely treated.

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.
What Hip said. Also: https://www.me-pedia.org/wiki/Collagen


@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.
This sounds *so* familiar.

But I fear I am actually not well enough to pursue this, and possibly too fragile for surgery.
I feel less expert than Jeff in terms of offering practical advice re: diagnosis and managing surgery. All I have is my own experience and everything I've soaked up from Jeff. Jeff has really talked to and interacted with so many more CCI patients than me.

What I would say is, if this is the cause of your symptoms, and you do get significant benefit from mechanical traction, you may find, post-surgery, resources you didn't know you had. At least, that was the case for me, and I went into surgery in the worst shape I'd ever been in in my life. Healing from the surgery became in many respects easier than I imagined because the core mechanism causing all of it had been resolved while I was under anesthesia. At the same time, I had a lot of non-surgical complications (mainly a very bad mast cell flare) and it was scary and it was hell. What I am saying is that your fears are rational and at the same time you might find you wake up from surgery feeling MUCH better, and suddenly recovery becomes easier than you may have imagined going in. It's very individual and you have to feel your way through this and make the choices that are best for you.

You do absolutely need to have a post-surgery care plan. I have no idea how anyone could do this completely alone. I am sure some people do, though, and those folks are f'ing superheroes. Maybe something to ask about in the Beyond the Measurement Group?

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?
So I only noticed this after I moved to LA and actually tried laying in the sun for an extended period of time. I found that my limit was about 15-20 minutes. Then, I would flush red (not sunburnt red, histamine flushing red) and would get all the symptoms I might have if I was exposed to mold or had eaten a strawberry. Sunlight, apparently, I learned the hard way, is also a mast cell degranulator.

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 :)
Yeah, I'll talk about this more in its own post but essentially I think a very bad black mold exposure in 2008 in Beijing may have triggered my MCAS and that that in turn weakened my connective tissue, setting the stage. Then, I got a massive infection while traveling in Africa (Coxsackie B4 is the strongest candidate) and as Hip points out, many infections, including Coxsackie, can cause your body to release collagenases. That infection may have been the straw that broke the camel's back and triggered my CCI.

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?
Not before surgery but now, yes, in particular since the tethered cord release. The TC release itself can cause more movement throughout the spine, is my understanding. I've been focusing on doing PT to strengthen my neck, shoulders and back, and that's really helping.

are there case where surgery is done and the result is not really positive?
I am sure. First, this is a surgery the EDS community has way more experience with. Many people do need have to have multiple surgeries, develop complications, or have disease progression of the underlying connective tissue disorder. Others do have very good outcomes from a single surgery. It's hard b/c we don't yet know how the outcomes in that patient population (hEDS) might differ from the outcomes of ME patients who don't meet hEDS criteria. The fact that I didn't have peripheral hypermobility or hEDS meant that my surgeon classed me in a different category (in his mind) in terms of likely outcomes and chances of needing future surgeries.

I asked him if my outcome was typical and he said, "No, because you aren't my typical patient." I don't know if he meant that I'm different from his hEDS patients or what he meant. The surgery is not experimental but its application in our patient population is. I do think if more ME patients are diagnosed and have surgery, results will vary and eventually, someone will have a major complication. It's just the nature of the intervention (surgery).

I don't say this to scare anyone but just to be realistic. When you have surgery, you're playing with probabilities. In the vast majority of cases, things will go exactly as expected. Sometimes, they don't.

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?
I am frequently challenged by soreness and stiffness and even sometimes a feeling of lactic acid in my muscles and brain that don't feel normal. They feel excessive. But of course, I have no idea what is to recover from 8 years of deconditioning. I've tried doing research and have found nothing like real guidance or expertise in this. All I know is that if I do feel like hell, if I get up and take a walk around the block, I feel better. I can do more and more everyday, even after I overdo it. I don't feel like my recovery from exertion is 100% normal but it's nothing like PEM, nothing like crashing, and I keep getting better the more PT, exercise, and strength training I can do. That is categorically NOT ME. Before surgery, all of that would have been unthinkable.

OK, I've got the other questions saved. Will try to answer more later or tomorrow!

(THANK YOU to everyone for your well wishes and generosity!!!)
 
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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: https://www.reddit.com/r/cfs/comments/br01c4
My heart is full of happiness for you @JenB

I have my Fusion surgery scheduled now in a few months. I have been neglected by so many physicians over the years. I fell ill with ME (diagnosed after ICC) in early 2018 but had severe spine issues for 7yrs prior to it. Was hospitalized numerous times. „You’re stressed out“ „it’s because your pregnancy it will pass“ „it’s because you’re a new mom it will pass“ etc.

Unrest did safe me in so many ways. Your recovery feels like I actually got better myself already 😀

I understand how it must be such a rollercoaster. 8 years of your life...

I actually don’t have a question right now I’m just really happy for you.😀I hope you and your husband will enjoy and readjust and take all the time you need to yourselfs. You did so much for so many people already.

Thank you for sharing and your incredible fight. Really I am just full of joy. Sorry if it’s too much

Also thank you @jeff_w I was able to get diagnosed and find a qualified doctor after all
 

perrier

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Dear Jen

Thank you very much for all that you have done, and for such utterly useful breathtaking honesty. Thanks. Best wishes.

I wish there was a doctor we could go to who would look at all the possibilities and help us. Some folks are so weak, so bedridden, that they are unable to go from one doctor to another. Just taking such a person to one doctor is a major undertaking, as the person is so sick.

Best wishes.
 
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What wonderful news! I'm so happy for you. I've been convinced for some time that intracranial pressure due to mechanical issues plays a huge part for many people. It explains so much.
 
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This 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!
 

Rachel Riggs

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This 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!
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 too :)