My ME is in remission
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ljimbo423
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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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Not insane at all! Does pumping iron twice a week and doing cardio count?
That's what I do now.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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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!
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.
This is a lot, but I'm going to try to answer what I can!
Unfortunately, no. But there's discussion of having other CCI-diagnosed ME patients have this test before surgery.
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...
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?"
Because it was.
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.
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.
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 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
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.
What Hip said. Also: https://www.me-pedia.org/wiki/Collagen
This sounds *so* familiar.
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?
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.
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.
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.
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.
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!!!)
Unfortunately, no. But there's discussion of having other CCI-diagnosed ME patients have this test before surgery.
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...
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?"
Because it was.
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.
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.
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 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!
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.
What Hip said. Also: https://www.me-pedia.org/wiki/Collagen
This sounds *so* familiar.
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?
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.
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.
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.
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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mattie
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Congratulations Jen!
This is spectacular. Enjoy!
This is spectacular. Enjoy!
godlovesatrier
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I'm really glad your fully in remission Jen. Have been following your tweets since just before your surgery. I do wish the UK medical system wasn't in such a mess right now. Good luck with your continued improvements. Will you direct another film?
Judee
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Wow that just blows my mind. Incredible!!!
That's what I was wondering too.
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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
TreePerson
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Thanks for your comprehensive and honest answer to my question Jen. I wish you all the best for your continuing recovery and return to full strength. What a journey!!
Mel9
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@JenB
Congratulations. What a wonderful result!
Do you have any idea why you no longer need Mestinon?
Congratulations. What a wonderful result!
Do you have any idea why you no longer need Mestinon?
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.
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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Fabulous news! I’m so glad this worked for you. Wishing you continued healing and wishing all the best to you and Omar.
Snow Leopard
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All I can say right now is wow!
Celandine
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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.
jesse's mom
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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 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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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