Questions for Jen Brea

suevu

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

We should focus on alternatives to surgery, most of us can't afford it and certainly the risks involved are too high for someone who is moderate-mild. IT seems the issue is related to collagen breakdown as Jen has pointed, so maybe figuring strategies to boost its production?? Just an idea.
 

rel8ted

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Agree.

We should focus on alternatives to surgery, most of us can't afford it and certainly the risks involved are too high for someone who is moderate-mild. IT seems the issue is related to collagen breakdown as Jen has pointed, so maybe figuring strategies to boost its production?? Just an idea.
I sincerely doubt a reputable neurosurgeon is going to offer surgery to a patient who is not severe because 1.) the CCI literate surgeons are literally swamped at this point 2.) they are very unlikely to risk complications with a patient who will reap little benefit.

It is not all about whether we can afford the surgery. The important factor is do we NEED the surgery.

IT seems the issue is related to collagen breakdown as Jen has pointed, so maybe figuring strategies to boost its production??
In EDS patients, the issue is likely collagen because we have defective collagen. Not all ME/CFS patients will be EDS patients. If you research any of the science on EDS and find a way to "boost" collagen, please let me know. The collagen is defective at a genetic level and doubtful there is such a thing as boosting healthy collagen from defective collagen. I would be quite impressed if there is a way. @Hip am I wrong here???
 

suevu

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I sincerely doubt a reputable neurosurgeon is going to offer surgery to a patient who is not severe because 1.) the CCI literate surgeons are literally swamped at this point 2.) they are very unlikely to risk complications with a patient who will reap little benefit.

It is not all about whether we can afford the surgery. The important factor is do we NEED the surgery.


In EDS patients, the issue is likely collagen because we have defective collagen. Not all ME/CFS patients will be EDS patients. If you research any of the science on EDS and find a way to "boost" collagen, please let me know. The collagen is defective at a genetic level and doubtful there is such a thing as boosting healthy collagen from defective collagen. I would be quite impressed if there is a way. @Hip am I wrong here???
If there is a will there is a way for sure.

I doubt it is at genetic level only, we were healthy before falling sick, so this can't be only a genetic level issue, something on top of it must be triggering the wrong genes (my bets again are on bacteria and mold), but whatever it is, there should be a way to reverse it at least to certain level that will reverse the CCI and thus all the myriad of symptoms associated that resolve with surgery??

Any hints? We are in the world of the unknown I know, but now that thanks to Jen Brea and Jeff we have identified the "weak point" of the disease (the neck area) we should all look for ways to focus all our efforts on restoring the collagen on that area, don you think?
 

JenB

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I sincerely doubt a reputable neurosurgeon is going to offer surgery to a patient who is not severe because 1.) the CCI literate surgeons are literally swamped at this point 2.) they are very unlikely to risk complications with a patient who will reap little benefit.

It is not all about whether we can afford the surgery. The important factor is do we NEED the surgery.


In EDS patients, the issue is likely collagen because we have defective collagen. Not all ME/CFS patients will be EDS patients. If you research any of the science on EDS and find a way to "boost" collagen, please let me know. The collagen is defective at a genetic level and doubtful there is such a thing as boosting healthy collagen from defective collagen. I would be quite impressed if there is a way. @Hip am I wrong here???
Thank you
 

suevu

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I think it is too early to worry about the size of the subset, if there is one. It seems that it would be more effective to worry about establishing some diagnostic criteria for said subset.
I highly doubt having all the SAME symptoms some would have an origin (the neck area, brain/spine junction) and others would have a very different origin... doctors don't have a clue and most they diagnosis are wrong, I suspect that would be the reason why many patients aren't identified properly as having structural issues in that area, while the origin of the issues in the area my vary greatly at their root (RA, infections, antibiotics, injuries...), the origen of the symptoms seems pretty clear to be originated there... Just my opinion of course.
 

bombsh3ll

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@JenB i am so sorry to hear about your csf leak.

i am currently trying to figure out if my issues are due to a c sf leak (as my onset was precipitated by a forceful valsalva, before which I was 100% healthy & instantly disabled after) or cci, specifically cranial settling which Dr G diagnosed. Please can you describe whether your current leak related symptoms are similar or different to what you had with your proven cci, & in what way? MRI showed no leak on me, but doesn,t pick all up, especially if chronic.

Thanks & heal soon

b xxx
 

suevu

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@JenB i am so sorry to hear about your csf leak.

i am currently trying to figure out if my issues are due to a c sf leak (as my onset was precipitated by a forceful valsalva, before which I was 100% healthy & instantly disabled after) or cci, specifically cranial settling which Dr G diagnosed. Please can you describe whether your current leak related symptoms are similar or different to what you had with your proven cci, & in what way? MRI showed no leak on me, but doesn,t pick all up, especially if chronic.

Thanks & heal soon

b xxx
A valsavla maneuver?? Isn't that when you close your nose and try to clear your ears?? Please give more details on your onset

I have constant tinnitus and plugged ears, constantly clenching and the need to do that valsalva maneuver several times a day, like if I were all day long on a plane... Please give us more details.
 

bombsh3ll

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A valsavla maneuver?? Isn't that when you close your nose and try to clear your ears?? Please give more details on your onset.
Yes that's right, although more extreme. I tried to blow up what I thought was a balloon, but it was actually a water bomb. I blew so hard I passed out. I was completely well with no symptoms at all prior to that, but since then I have never really been able to be upright due to horrible symptoms of presyncope, severe headache (I feel headache is not the word I want to use as it is far more than a headache, but I don't have another descriptive term, basically it feels as if I am dying if I try to force myself to be upright), nausea, light & sound sensitivity, cognitive impairment & more.

So my cause was very traumatic/structural, with a clear inciting event. It was 5pm, 4th August 2014. Since then I was diagnosed with both POTS & EDS - I came across both of these myself by researching my symptoms, & saw specialists who confirmed these with tilt table, Beighton score etc.

Once you read about spinal CSF leaks, my mode of onset, symptoms & connective tissue disorder scream CSF leak, but I did not come across this diagnosis until 4.5 years in. I thenhad a brain & spine MRI with contrast which was normal, but these miss 20-30%, with that figure increasing as time passes since onset.

Meantime, before learning about CSF leaks, I saw Jeff's story regarding CCI, then Jen, identified with much of what they had experienced symptom wise, & started to pursue that with upright MRIs & cineradiology in Barcelona. Dr Gilete diagnosed cranial settling & I have been offered fusion surgery with him.

I sent the same scans to Dr Bolognese though and he wrote back no instability (however he doesn't look for vertical instability aka cranial settling on scans) but I should get checked for a CSF leak.

About that time I came across Dr Carroll's video on youtube re POTS & CSF leak, & watching that was like a lightbulb came on for me. I learned that valsalva manoevres, even a coughing fit or hard sneeze in some people, can cause a leak, it is a recognized mechanism for how a person can be instantly & profoundly incapacitated & unable to be upright. Also having a connective tissue disorder like EDS is a risk factor, & females get them more commonly than males. And tragically a substantial number had been diagnosed with POTS & told nothing could be done, when actually they turned out to have a treatable problem.

So that is why I am at a crossroads. If you read the symptoms of a CSF leak, & those of CCI, they are remarkably similar. That is why I would love to hear from Jen how the symptoms of each compare to each other, having experienced both. Is there some way to tell them apart by how you feel?

B xxx
 
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How big is that subset?
I have had so much inflammation and pain in the base of the skull/cervical area for decades and was forever asserting: something is wrong at this location. Then I saw the 20/20 OPERATION...was that in the 1990s?

I still have not been evaluated but painful inflammation and the squeeze in this general location just seems like some key symptom to me, and now it seems to make SENSE, with the collagen degradation over time.
 
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we should all look for ways to focus all our efforts on restoring the collagen on that area, don you think?
I was having alot of random weird pains, some joint issues....and at the recommendation of my Chinese Traditional Medicine practitioner, I went on the Tibetan Wind Diet.

I prepared the recommended food and ate it rather consistently for several months and most of these weird pains and joint things....went away or became far more dimininished.

Then: I kinda stopped the diet. I admit to getting tired, lazy and inconsistent.

The basic diet will at least: boost collagen consumption- via bone broths.

So: heavy bones- lamb or beef, with marrow...include the meat (if I ate meat at dinner, I don't include the meat in the broth). Add: nutmeg, a bit of molassas, a shot of red wine. Drink before bed, helps sleep.

Next, eat roasted root vegetables and sheep cheese. These are grounding (reducing wind). Fennel root reduces wind and can be eatten raw.

No bitter greens, and food is generally warm, cooked, oily. I stopped eating salads and my joints stopped hurting. This seemed: counterintuitive.

I do continue to buy some heavy bone broths...out of lazyness, but should resume the diet again...

So I believe from this experience that there is some relationship between "wind" and collagen in the body... if nothing else, perhaps on the diet, one loses less stored collagen.
 

nandixon

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Once you read about spinal CSF leaks, my mode of onset, symptoms & connective tissue disorder scream CSF leak, but I did not come across this diagnosis until 4.5 years in. I then had a brain & spine MRI with contrast which was normal, but these miss 20-30%, with that figure increasing as time passes since onset.
Have you looked into any of the other imaging techniques that can be used for locating a CSF leak?

This link gives several different MRI and CT scan variations (in particular myelography variations) under the section "DIAGNOSTIC TESTING":
https://spinalcsfleak.org/about-spinal-csf-leaks/diagnosis/

I didn't realize your illness onset was so acute/rapid.
 

percyval577

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Any hints? We are in the world of the unknown I know, but now that thanks to Jen Brea and Jeff we have identified the "weak point" of the disease (the neck area) we should all look for ways to focus all our efforts on restoring the collagen on that area, don you think?
A link between collagen issues and CFS could be manganese (which is at least a main thing in my cfs, it seems that I also have collagen problems, though I don´t know if I have CCI, and I don´t have EDS).

Mn is eg a required cofactor for collagen synthesis. If there is a difficulty to make proper collagen, then Mn levels in the blood might be high for steadily making new collagen, and this could be a factor in causing CFS (at least in my CFS high Mn should have been the first step, via borrelia). High Mn can alter iNOS as far as some clue is available. An additional factor could be a (temporarily) blockade of vitD receptors with consequences eg on a Mn transporter.

The other way around, high or low Mn levels might be a factor in causing CCI?
 
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