20 patients now found positive for CCI / AAI, there must be many more...

[Strawberry]

it would Be cool if researchrds also got to the root of why the collagen is failing so there would Be molecular, non surgical treatments.

Completely agree with this!

I definitely will NOT be getting surgery (I'm mild/moderate) but my quality of life is very poor. It would be lovely to get some assistance helping build collagen.

 

[JenB]

The goal is a case study. There just needs to be a few more cases, first.

 

[frozenborderline]

I did have a friend ask a question to the panel at a college event of Unrest screening w/ panel that Ron davis was on, about cci. Ron addressed it apparently and I really want to get the video, but I know that the OMF is at least aware of this. I wish they had unlimited funding so they could look more at th molecular basis of cci, what could cause the collagen degradation etc. plus the mold /mycotoxin assays. I wish someone besides surgeons and a few clinicians was looking at this stuff so that there could be non surgical solutions soon.

 

[rel8ted]

I did have a friend ask a question to the panel at a college event of Unrest screening w/ panel that Ron davis was on, about cci. Ron addressed it apparently and I really want to get the video, but I know that the OMF is at least aware of this. I wish they had unlimited funding so they could look more at th molecular basis of cci, what could cause the collagen degradation etc. plus the mold /mycotoxin assays. I wish someone besides surgeons and a few clinicians was looking at this stuff so that there could be non surgical solutions soon.

I would like to see more options as well. It seems that CCI/AAI is (like ME) little known & rarely discussed. I am thrilled to see that there are a few patients that are finding a path to relief and/or recovery with the surgery, however I am extremely cautious about it in my own case. In addition to ME, I have (in the words of my neuro) dysautonomia symptoms much more severe than normally seen in POTS. My hub & I feel like it could be possible that is stemming from CCI, but want to wait and find out what the issue is before we make any more decisions. This has been & will continue to be a year of hot pursuit of a root cause/ clearer diagnosis that we both feel like we need. We are prepared to pursue surgery if it becomes apparent that it would be a means to an end, and are thrilled to be able to follow the progress of those who have been pioneers in this area.

 

[Rufous McKinney]

I definitely will NOT be getting surgery (I'm mild/moderate) but my quality of life is very poor. It would be lovely to get some assistance helping build collagen.

yes: totally. I am highly unlikely to ever agree to some surgical fusion procedure.

so: I am going with the Tibetan Wind Diet, bone broths, heavy bones, reduce wind, which is pouring out of my neck at the moment (POP< POP). So I have experienced some improvement in "wind" symptoms by persevering with bone broth several times a week (nice to do. it daily); some dietary shifts.

Collagen: I'm just sure this is a key part of: the mystery

 

[Strawberry]

so: I am going with the Tibetan Wind Diet, bone broths, heavy bones, reduce wind

I'm curious to hear what you mean about diet? I did a quick google but couldn't find any "diet." Also, I assume wind is not referring to ...... gas.....

I keep meaning to go back to bone broth with gelatin added (plus ginger, garlic, lemongrass etc for medicinal properties).

 

[hezza]

Cci symptoms worsened again and getting a few recent crashes where it was hard to talk and impossible to move. Now wondering what to do to alleviate it. Don’t want to overdo traction , obviously since that’s part of what caused this worsening (but def not all Bc traveling and being upright for appts was part of it). Have a bolognese appt June 3. So it’s a waiting game. And my house is not wheelchair accessible AND it has mold and I’m mold sensitive. I’m wondering if it might be good to do Jeff’s bed foot up method again or also try the inversion table some since that would provide more gentle traction that could supplement manual or device traction. Need relief. wondering about if gilete would do sliding scale and also if we could rig up a van to be medical transport vehicle with bed strapped in somehow

Hi @debored13, Great to hear you have your appt! I just sent my paperwork to Bolognese Monday & received this today which seems a little early to have actually analyzed my discs & paperwork...🧐?

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.


PB


Does that sound similar to your first message from them? How did it unfold that you now have a June appt? And is it in person or a videoconference?

 

[out2lunch]

@jeff_w
The Stanford Genome Technology Center is currently researching the possible genetic link between ME and EDS.

Does anyone have any further info on this? I was part of Ron's nanoneedle study (I live in San Francisco and have several doctors at Stanford), and Julie mentioned that one of the blood vials was going to be tested for EDS genes because of my HEDS diagnosis from many years ago. That was back in Nov 2017. I haven't read or heard of any progress on studying the EDS - ME/CFS connection.

Thanks,
Judi

 

[jeff_w]

UPDATE: Just like me, Jen Brea has fully recovered from ME after her fusion surgery for CCI/AAI.

Here's her thread.

 

[Seven7]

UPDATE: Just like me, Jen Brea has fully recovered from ME after her fusion surgery for CCI/AAI.

Here's her thread.

do you all happen to have a list of doctors that can look into this?? I couldn't find Jen's by reading all the thread by now.

 

[rel8ted]

do you all happen to have a list of doctors that can look into this?? I couldn't find Jen's by reading all the thread by now.

On Jeff’s blog. Www.MEchanicalbasis.org

 

[jeff_w]

do you all happen to have a list of doctors that can look into this?? I couldn't find Jen's by reading all the thread by now.

From my website:
https://www.mechanicalbasis.org/neurosurgeons.html

 

[Seven7]

On Jeff’s blog. Www.MEchanicalbasis.org

In NY? I see a urologyst listed not sure is the right one, is there like a list? I am on the middle so I can choose closest? Or what kind of doctor to look for so far
Dr Kaufman NY
Chiary Nuorological center NY - Dr Dr Bolognese

 

[Seven7]

From my website:
https://www.mechanicalbasis.org/neurosurgeons.html

Thank you, I am reading aorund but I dont have a lot of time (ME with a full time job is very challenging)
1) DO I need to see an specialist then this people or go directly to them.
2) Do you know who Jen's and your doctor is? You can PM me if you do not want to post.
I have an schdule MRI of Spine next week But I am not sure if this will catch it??? Is there something specific I need to ask for on the MRI?

 

[MTpockets]

yes: totally. I am highly unlikely to ever agree to some surgical fusion procedure.

so: I am going with the Tibetan Wind Diet, bone broths, heavy bones, reduce wind, which is pouring out of my neck at the moment (POP< POP). So I have experienced some improvement in "wind" symptoms by persevering with bone broth several times a week (nice to do. it daily); some dietary shifts.

Collagen: I'm just sure this is a key part of: the mystery

I am curious if you have MCAS? I was trying to take collagen for my stomach but it gives me hives as it is high in histamines. Does the bone broth bother you at all?

 

[Marylib]

I just have one thing to say. I am very happy for all of you who are recovering. I am too old and love my homeostasis too much to even try neck traction. One question, though. I think Jen had a sudden onset? And no problem with unrefreshing sleep? I thought I had sudden onset but my specialist, Ros Vallings thinks mine was gradual up to that point. Some years I wondered if I could have been diagnosed with FM at some point because I had lots of viral infections and thought "do I have AIDS?" I was about 40. Then sudden awful sleep disruption. Fibro like pain. Shooting ice pick headaches. But I could exercise to control fibro pain. No PEM. Maybe 10 years later - bad flu, could not get out of bed for 3 weeks and it was all sudden onset going downhill including PENE/PEM. The fibro pain went away and it was more nerve pain. Now, 25 years later from first symptoms, my pain is not bad at the moment. Lots of other stuff is still really really bad especially sleep, ability to talk, cognition. I am curious about what others may think of all this in terms of onset, etc, and CCI. Never had a remission. So I am curious. I am sorry if the timeline doesn't make sense but it is the best I can do at the moment.

 

[valentinelynx]

Also, this standard kind of cervical MRI (supine and without flexion/extension views) is apparently not very useful in assessing for CCI/AAI. Unless you have severe obvious Chiari malformation, you need an upright MRI and views with your head back (extension) and forward (flexion) to show the abnormality.

I wish to correct this thing I said way back in March . I can't believe how much this idea of CCI in ME/CFS has grown so quickly! I have since learned that what scans you need varies with the neurosurgeon. Dr. Bolognese works off of standard supine cervical MRIs (although he apparently expresses a preference for 3 Tesla MRIs—the highest resolution currently available), while Dr. Gilete prefers a different type. I recommend checking with the neurosurgeon you wish to consult before getting MRIs or CTs done. After all, it is that neurosurgeon who will be reading the study, so you don't want to waste your money getting the wrong study. It is highly unlikely that the radiologist who reads your scan will render a useful opinion about these issues, unless, as I noted above, you have an obvious Chiari malformation.

 

[Rufous McKinney]

I am curious if you have MCAS? I was trying to take collagen for my stomach but it gives me hives as it is high in histamines. Does the bone broth bother you at all?

I have not observed any direct issue with taking bone broth; either broth I made myself or some Organic Grass Fed pricey stuff I use...several days a week, not every day...(I don't have infinite cash, how surprising).

I do think I have MCAS issues: and they aren't diagnosed. I uttered "I probaby have MCAS" at my last doctor appointment, that resulted in no direct comment or action (we were distracted with other things on the list).

Immunologist refuses to make an appointment to see me.

I think I may have some odd varient. a Dry varient. Sahara Desert version. I have alot of angiodema. Swelling, but everything is dry, no congestion, no rashes, no hives.

 

[valentinelynx]

Swelling, but everything is dry, no congestion, no rashes, no hives.

Swelling, hives and rashes are not necessary for MCAS. I learned from reading Dr. Afrin's book (his name always gives me a giggle given the topic... ) Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity that MCAS can present as just about any symptom known to humanity (and some not known, or believed).

 

[mariovitali]

cc @jeff_w

FWIW, the machine learning system i use, confirms an association between ME/CFS Symptoms and the Brainstem. Snapshot from the actual run, where "Brainstem" gets ranked as #2 :