Questions for Jen Brea

suevu

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I don't know if Jen Brea is going to read this, but at least someone who knows her case closely could reply as I have been talking to many patients and we wonder a lot of things about her case. I have also CCI/AAI confirmed in my case so me, like all those with CCI/AAI have many doubts:

1)It seems she can't move her neck sideways, or has lost many degrees of movement, is that true? The doctor who evaluated me even said I would not be able to drive.

2)Since restoring that area alignment restores most of the body functions we have lost, does it restore as well the collagen production? Could the surgery be a king of "loop-breaking" method to restore collagen production. Can you remove the implant used in the surgery once the collagen production is restored and thus gain the lost movement again? (just an idea).

3)Are there any alternative methods to restore the collagen production in that area not as invasive as the surgery that are proven to work? From FMT's to stem cell therapy...anything recommended for that that is permanent?

4)Can you lift weights or put weight on your shoulders/head? or is that dangerous? what sports can you do now or can't you?
 
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suevu

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Oh sorry to hear she is sick again, I have read her twitter and I really dont know why she keeps ignoring the microbiome since it seems to be the root cause of the disease (this and all). Im quite puzzled.
 

pattismith

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@suevu ad 3) I found this video explicating an alternative, but I can't assess the scientific value of it. Is it promo? I don't know... A]
He seems to be convinced that all the symptoms related to high cervical instability are a consequence of vagus nerve compression (instead of Brainstem compression, which neurosurgeons specialized in EDS think is involved).

Vagus Nerve (CNX) goes out of the skull through the jugular foramen, not the foramen magnum, so i don't see how it could be compressed.
Accessory nerve, on the other hand can be involved in the compression:
1566764186801.png
 

JenB

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I don't know if Jen Brea is going to read this, but at least someone who knows her case closely could reply as I have been talking to many patients and we wonder a lot of things about her case. I have also CCI/AAI confirmed in my case so me, like all those with CCI/AAI have many doubts:

1)It seems she can't move her neck sideways, or has lost many degrees of movement, is that true? The doctor who evaluated me even said I would not be able to drive.

2)Since restoring that area alignment restores most of the body functions we have lost, does it restore as well the collagen production? Could the surgery be a king of "loop-breaking" method to restore collagen production. Can you remove the implant used in the surgery once the collagen production is restored and thus gain the lost movement again? (just an idea).

3)Are there any alternative methods to restore the collagen production in that area not as invasive as the surgery that are proven to work? From FMT's to stem cell therapy...anything recommended for that that is permanent?

4)Can you lift weights or put weight on your shoulders/head? or is that dangerous? what sports can you do now or can't you?
1) This is the best place to ask these questions: https://www.facebook.com/groups/2235327493461719/?fref=nf but briefly, I can turn my head 50 degrees and have normal flexion/extension. I don’t really notice the ROM I’ve lost. My neck was just very stiff immediately after surgery as I had to wear a cervical collar for three months. It’s been a process of PT and working with a myofascial release person to increase my ROM (but ONLY after strengthening my neck). Although frankly, if my head were fixed in place, it would be a very small detail in comparison to what I’ve gained.

2) I don’t think so. At least, my nails (which became brittle after onset) are still brittle

3) Nothing proven. Folks are trying stem cell prolotherapy and BPC 157

4) Yes, lifting weights are a very important part of my PT. I should probably never run or do anything high impact, but other than that, I’m fine. Note: folks with hEDS probably have additional activity restrictions.

I saw on Twitter that @JenB is currently bed bound again. She has a CSF leak and is awaiting a blood patch to fix it. Hopefully this is just a temporary blip for her. Wishing her well. Nothing to do with your question, but she may not be well enough to respond at the moment.
Yeah, I have been in bed since Friday. I think I’ve had the leak for over a month, after some PT-prescribed massage for my tethered cord scar. Something is probably not 100% right in the way that I healed. However, it was a slow leak. It would manifest as me suddenly needing to lay down at 2-6pm after standing all day, then getting a new burst of energy after being supine for a few hours (i.e,. CSF fluid replenishing).

Then Friday, I sat in a weird, twisted position for two hours during a meeting, which I think increased the rate of the leak A few minutes after getting up, I developed the classic spinal fluid headache. And then yesterday was hell. So that’s how I figured it out. Good news is, I’ve been more or less totally flat since Friday night and leak seems to have substantially self-healed, inasmuch as at least I can’t tell that I am leaking when I am upright for a few minutes. I am probably going to try another 48 hours of bed rest and then slowly increasing my upright activity, laying flat if I notice any symptoms of a leak. Hopefully, I can self-heal completely now that I know it is happening. If not, I will go get a patch. Main thing is to make sure that the imaging looks OK. Something tore my dura, and I need to see if there is a more extensive problem I need to fix.

Oh sorry to hear she is sick again, I have read her twitter and I really dont know why she keeps ignoring the microbiome since it seems to be the root cause of the disease (this and all). Im quite puzzled.
Because I don’t think we have any strong evidence this is the root cause of the disease and modulating my microbiome has never had any impact on my health. If that’s helpful for others, great, but I don’t know much about it because it has not been significant in my case. My G.I. symptoms or disbyosis I used to have was a function of slow motility, a symptom of autonomic dysfunction. This improved dramatically with both my vagus nerve stimulator and Mestinon. And then resolved completely with surgery.

On the vagus nerve: after it enters the jugular foramen, it joins the brainstem. So if the brainstem is compressed, it is quite plausible the vagus nerve is along with it (intracranially). If it were not, then CCI probably wouldn’t cause some of the symptoms that it does. Also, there are a bunch of cranial nerves that can get compressed with CCI that also don’t exit the foramen magnum but can cause symptoms like facial numbness, mouth drooping, tongue sticking out, etc.
 

Hip

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microbiome since it seems to be the root cause of the disease
Microbiome research is a current scientific fashion or fad. It's easy to get research grants, because the idea is in vogue. And just as in the world of clothes fashion there are fashion victims who get caught up in all the sartorial hype, so too are there fashion victims who fall for the latest scientific fad.

Here is a Nature article which tries to bring the microbiome fashion victims down to Earth. Here is one except:
Microbiomics risks being drowned in a tsunami of its own hype. Jonathan Eisen, a microbiologist and blogger at the University of California, Davis, bestows awards for “overselling the microbiome”; he finds no shortage of worthy candidates.
 

pattismith

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On the vagus nerve: after it enters the jugular foramen, it joins the brainstem. So if the brainstem is compressed, it is quite plausible the vagus nerve is along with it (intracranially). If it were not, then CCI probably wouldn’t cause some of the symptoms that it does. Also, there are a bunch of cranial nerves that can get compressed with CCI that also don’t exit the foramen magnum but can cause symptoms like facial numbness, mouth drooping, tongue sticking out, etc.
Sorry to read your are still fighting for recovering jen.
A nice picture to show the relationship of the vagus nerve with the brainstem. The brainstem is the root of the vagus nerve, so yes the brainstem compression looks very similar to a vagus nerve compression, even if it's not exactely the same thing. In any cases, instability beyond C1 is not likely to put a direct pressure on Brainstem, most probably an indirect stress?

1566791050008.png
 

JenB

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Sorry to read your are still fighting for recovering jen.
A nice picture to show the relationship of the vagus nerve with the brainstem. The brainstem is the root of the vagus nerve, so yes the brainstem compression looks very similar to a vagus nerve compression, even if it's not exactely the same thing. In any cases, instability beyond C1 is not likely to put a direct pressure on Brainstem, most probably an indirect stress?

View attachment 34354
The compression or stretching comes from potentially several different sources. There are the global effects of elevated intracranial pressure. There is the direct compression of cranial settling (vertical instability). There is the pulling/kinking on the brainstem itself with the sliding/shifting of the skull (horizontal instability). And if you have a tethered spinal cord, that’s another form of neural tension that can indirectly affect the brainstem. Chiari Malformation is probably the only form of direct pressure.

I had symptoms referrable to my brainstem, vagus nerve, hypoglossal nerve, vestibulocholar nerve and Trigeminal nerve. All the cranial nerves arise from the brainstem. But:

The olfactory and optic nerves arise from the anterior portion of the brain called the cerebrum. The oculomotor and trochlear cranial nerves stem from the midbrain. The trigeminal, abducens, and facial nerves arise in the pons. The vestibulocochlear nerve arises in the inner ears and goes to the pons. The glossopharyngeal, vagus, accessory and hypoglossal nerves are attached to the medulla oblongata.

I had problems with essentially all the nerves that arise from the pons and medulla oblongata.

AAI can cause very similar symptoms as CCI and can contribute to brainstem deformation (stretching or kinking). Both stretching and compressing change the shape of the membrane of neurons and lead to all kinds of functional derangements of blood flow and metabolism: https://www.me-pedia.org/wiki/Neural_strain

Pausing here but I will definitely write an article mapping my symptoms to the anatomy and the surgeries that resolved them. Thanks for your great questions!
 

suevu

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Microbiome research is a current scientific fashion or fad. It's easy to get research grants, because the idea is in vogue. And just as in the world of clothes fashion there are fashion victims who get caught up in all the sartorial hype, so too are there fashion victims who fall for the latest scientific fad.

Here is a Nature article which tries to bring the microbiome fashion victims down to Earth. Here is one except:
Sorry I don't agree, having myself gone from bedbound to moderate-mild fatigue, I can even work now, after many FMTs (when I say many I say around 40) and many other cases recorded in some board with CFS patients shows me clearly it can work for ALL, you have some members of the other board here that can prove it. It mostly depends on donor quality and compatibility and at this moment both things are hard to determine.

There is almost no financial incentive for doctors who use it so I guess that's the reason they are not very interested in going down that road, sadly medicine is a business and as such only high profitable therapies are prescribed. The surgery I have been prescribed costs around 70.000 euro, if you compare that to the 4.000 or 5.000 it can cost at most a 1 or 2 month FMT program... Its clear what option is best for doctors interests. Its even helping people with ALS, probably those who have the right donor, I know also a few cases of people getting into remission with FMTs who suffer ALS, but again you find no solid evidence simply becuase there are basically no large studies, its not profitable enough :(

Thanks @JenB for your answer, I hope you recover soon from this downturn till the full recovery you deserve, probably more than any of us, but it seems surgery is not for me, not only because it would be difficult to afford but the risks involved seem more than I thought.

I will keep looking for alternative ways to heal my neck/throat area from FMT to PRP if possible or infrared lights or whatever can help get out this nightmare. I can't compare my situation to 1 year ago, but I'm not fully recovered yet, and thats my goal and won't stop till I achieve it :)
 

suevu

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The olfactory and optic nerves arise from the anterior portion of the brain called the cerebrum. The oculomotor and trochlear cranial nerves stem from the midbrain. The trigeminal, abducens, and facial nerves arise in the pons. The vestibulocochlear nerve arises in the inner ears and goes to the pons. The glossopharyngeal, vagus, accessory and hypoglossal nerves are attached to the medulla oblongata.

I had problems with essentially all the nerves that arise from the pons and medulla oblongata.
s!

What really puzzles me the most of all these symptoms being produced in the neck/brain area and can't really get to even grasp what mechanisms responds to is hypoglicemia, I used to have horrible hypoglicemic episodes on a daily basis in my worst days (glucose could go down to 45 in a matter of 3 minutes), without being a diabetic, how can that be connected to the neck area? AN system? Anyone has an idea on that?

It seems to be related to caffeine / norepeirefrine or some similar hormones, as taking a coffee without sugar causes me instant hypoglicemia. Has any doctor given you the explanation for that? All the other symptoms can more or less be easy to understand since they are brain related, but glucose control?

Some people improve a lot with meditation, specially from the hypoglicemic group. Anyone knows why?

How unknown the human body is still to doctors. :(
 

suevu

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So your logic is: FMT helped your ME/CFS ➤ Therefore all diseases are caused by the microbiome.

There is a serious flaw in that logic.
Its not that simple and that's not my logic at all (probably yours). Its a mix of many variables, the microbiome is an extremely important one that is kept out of the equation almost all the time because only 5 years ago we didnt know it even existed or the role it played was so important. With a wonky microbiome but without the DNA basis we most likely all have, you wont get ME, but probalby will get any other disease, even with the wrong DNA and the wrong microbiome but without infections or mold exposure you won't get the disease either....

So far virtually all diseases have been linked to it as the root cause, so yes, in all the diseases the microbiome is involved and the reason why medicine can't cure virtually most of them is because we still dont know how to modulate it.

The abuse of antibiotics and microbiome high impact way of living in the west is creating this emerging of all kind of diseases, being ME and Fibromyalgia one of the top growing ones that are by the way unknown to tribes and hunter gatherers shows pretty clearly how this is all involved. I would recommend you this article. The topic is unbelievable complex, but doesn't mean it should be ignored:

https://www.ncbi.nlm.nih.gov/pubmed/29133248
 

Hip

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So far virtually all diseases have been linked to it as the root cause
There is no science at all which has demonstrated that the gut microbiome is the root cause of all disease.

Some studies have suggested the gut microbiome might possibly play a role in some diseases, but even that is uncertain.



the microbiome is an extremely important one that is kept out of the equation almost all the time because only 5 years ago we didnt know it even existed
Do you believe that science only discovered bacteria living in the gut 5 years ago?
 
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pamojja

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... Science only discovered bacteria living in the gut 5 years ago?
Yea, that is a bid unbelieveable. Though then not being science minded at all, as soon as being grown up 35 years ago I avoided anti-biotics like the plaque, because they potentially also could kill beneficial gut bacteria. Don't remember where I picked that up?

However, my strategies to support my gut microbiome really seem to have worked, my ubiome result from 2 years ago showed I had more diversity than 93% of all tested, an overlap of 96% with those reporting no health issues at all. Still having suffered very serious chronic diseases.
 
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suevu

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There is no science at all which has demonstrated that the gut microbiome is the root cause of all disease.

Some studies have suggested the gut microbiome might possibly play a role in some diseases, but even that is uncertain.





Do you believe that science only discovered bacteria living in the gut 5 years ago?
It virtually ALL comes down to microbes when we talk about disease, combined with other factors of course.

I dont know if science has only discovered the microbiome (not only bacteria) 5 years ago, but the links with it and disease have not been identified in most diseases more than 5 years ago, and science is one thing and doctors is another one... They are only now beginning to be aware of it.

If only I knew the role of the microbiome only 3 years ago I wouldn't be sick now. That's how important it is, go figure. I can't stop regretting having listened to doctors and people not being aware of the dangers of antibiotics.
 
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suevu

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Yea, that is a bid unbelieveable. Though then not being science minded at all, as soon as being grown up 35 years ago I avoided anti-biotics like the plaque, because they potentially also could kill beneficial gut bacteria. Don't remember where I picked that up?

However, my strategies to support my gut microbiome really seem to have worked, my ubiome result from 2 years ago showed I had more diversity than 93% of all tested, an overlap of 96% with those reporting no health issues at all. Still having suffered very serious chronic diseases.
I remember perfectly having my first PEM only after a round of antibiotics and virtually many of the symptoms, but at that time I hadn't worsened so much so I recovered after a few days. For me its cristaline clear the role of microbes in this disease, that actually is even triggered by microbes (an infection), no matter where you look they are always involved.

I did also that test and its not accurate at all, I was bedbound and my diversitiy was huge, so diversity is probably not as important as we think but rather having a good distribution of dominant healthy metabolite producing microbes. But that's just a guess, since there is a lack of knownledge and studies.
 
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Currently scientists Really dont Know what is a Good MicroBIOME. Even if you Share 96% of Overlap the last 4% can Mess up Everything (eg C-diff infection). Also some strains of certain bacteria Groups can produce toxines, others are Not.
I can only speak for myself, had my Complete digestion System checked with video Capsule. No signs of inflammation. But calprotectin value is more Than 100, which means there is some low active Inflammation.
A microbiome test revealed overgrowth with pro_inflammatory bacteria. Will do a calprotectin test again this week to Check Status and After that i Plan some DIY FMT. (Need donor)
I am curious that the calprotectin could get back to normal range again

But lets get back to the original Topic of this Thread, we can discuss about microbiome in a new thread
 
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