Environmental causes of cci and related problems

debored13

Senior Member
Messages
2,014
Likes
2,588
Location
Vermont, school in Western MA
I wanted to make a thread for speculation about environmental causesof craniocervical instability, since many people without no genetic connective tissue disorders or trauma are turning out to have these issues. N

As a starting point I will link this post @Hip made that discuses collagen degrading enzymes and the various causes of elevated production. https://forums.phoenixrising.me/thr...-atlantoaxial-instability.62164/#post-1011562

I have some additional ideas, both anecdotal and from literature, on what can cause this. I hope nobody has an issue with wild speculation here, but I think it’s perhaps an appropriate response to seeing what we may call an epidemic of cci diagnoses. I have cci and I believe there’s an environmental cause. I’m not sure this gives info about how to treat it yet, or invalidates surgery as an option, but I personally think it’s impoetant to consider.

Tagging others with cci diagnoses: @JenB , @mattie , @jeff_w , @Daffodil. Those are all I can remember off the top od my head , feel free to add more. Oh and I didn’t want to tag starchild as she Is just recovering from surgery
 

debored13

Senior Member
Messages
2,014
Likes
2,588
Location
Vermont, school in Western MA
@Hip, I believe you mentioned the relationship between mycotoxins and mmp-9 in terms of there being clinical guidance for twsting for mmp-9 in cirs, but I think there’s also some literature that’s shows this being elevated in mycotoxin exposure. Like many cytokines it’s sort of non specific to exposure but anything that causes inflammation could elevate it.
 

debored13

Senior Member
Messages
2,014
Likes
2,588
Location
Vermont, school in Western MA

junkcrap50

Senior Member
Messages
534
Likes
987
The brainstem could be a important location for ME/CFS pathology. There are several researchers looking at it: Dr. Baraniuk, Dr. VanElzakker, Dr. Wyller, Dr. Nakotomi, Dr. Barndem. Perhaps others.

@Cort wrote an article about ME/CFS researchers finding lots of dysfunction in brainstem function in ME/CFS patients. It was very intriguing. I believe this is the artcle: http://simmaronresearch.com/2019/03...chronic-fatigue-syndrome-the-vanelzakker-way/

But Cort has several articles about the brainstem in CFS: https://www.healthrising.org/blog/category/research/brain/brainstem/
 

brenda

Senior Member
Messages
2,123
Likes
1,682
Location
UK
As borrelia likes to feed on collagen, l am wondering how much involvement is coming from that direction. With my own case of suspected CCI, l think it might be an issue along with an exposure to pesticide and mold senstitivity,, though l also suspect vEDS due to familial aneurisms plus multiple other signs and am awaiting an appointment with a rheumatologist and have an ultrasound booked to persue this.
 

debored13

Senior Member
Messages
2,014
Likes
2,588
Location
Vermont, school in Western MA
Related: Re: cci--was just reading naviaux's CDR paper and this stood out to me:

"The systemic form of the CDR, and its magnified form, the purinergic life-threat response (PLTR), are under direct control by ancient pathways in the brain that are ultimately coordinated by centers in the brainstem. Chemosensory integration of whole body metabolism occurs in the brainstem and is a prerequisite for normal brain, motor, vestibular, sensory, social, and speech development."

From naviauxs paper on the Cell Dangwr Response. I sure hope the OMF looks into this.
https://www.sciencedirect.com/science/article/pii/S1567724913002390
 

debored13

Senior Member
Messages
2,014
Likes
2,588
Location
Vermont, school in Western MA
As borrelia likes to feed on collagen, l am wondering how much involvement is coming from that direction. With my own case of suspected CCI, l think it might be an issue along with an exposure to pesticide and mold senstitivity,, though l also suspect vEDS due to familial aneurisms plus multiple other signs and am awaiting an appointment with a rheumatologist and have an ultrasound booked to persue this.
My me/cfs started with a well documented lyme infection but I have also had significantly mold exposure. I think borrelia could certainly play a role
 

Hip

Senior Member
Messages
12,468
Likes
22,572
I'm a bit too brain fogged to read all the above links at the moment. But wanted to mention this:

One other potential factor in the connective tissue weakening/dysfunction of CCI/AAI that occurred to me today while reading JenB's thread is fibroblasts.

Fibroblast cells play a primary role the manufacture and maintenance of connective tissue. They secrete the basic ingredients like elastin and collagen needed to build and repair connective tissue.

Coxsackievirus B is able to form persistent infections in fibroblast cells (and in the Richardson 2001 ME/CFS brain autopsy, he actually found brain fibroblasts were infected with enterovirus). Thus if that persistent infection alters the functioning of the fibroblasts, it could explain why CCI/AAI may appear in ME/CFS patients with coxsackievirus B infection.
 
Last edited:

LINE

Senior Member
Messages
133
Likes
229
Location
USA
The immune system puts out some strong chemicals to stop pathogens, which include multiple species of ROS and RNS. These create strong oxidative stress, it is the oxidative stress (inflammation) that damages healthy tissues, cells, organs etc.

The antioxidant system repairs the damage. The antioxidant system comprises of superoxide dismutase, catalase and glutathione, these are known as the endogenous antioxidants. These are dependent on available nutrients to be manufactured.

Exogenous antioxidants are antioxidants that are consumed such as vitamin C and E, plant based antioxidants such as turmeric, moringa and many others.


Abstract
Reactive oxygen species (ROS) are a group of highly reactive chemicals containing oxygen produced either exogenously or endogenously. ROS are related to a wide variety of human disorders, such as chronic inflammation...

ROS
Reactive oxygen species (ROS) are chemically reactive chemical species containing oxygen. Examples include peroxides, superoxide, hydroxyl radical, singlet oxygen, and alpha-oxygen

RNS species
Reactive nitrogen species (RNS) are a family of antimicrobial molecules derived from nitric oxide (•NO) and superoxide (O2•−)
 
Messages
21
Likes
41
Thank you for starting this thread! I have a loooong anecdote with lots of speculation about my experience with environmental triggers, connective tissue stuff, and the hint of cerebrospinal fluid pressure but no confirmed CCI.

My ME/CFS seems to have been triggered by environmental exposures. The first time it was metal, but I went into remission before I got diagnosed. The second time it was mold in the HVAC in an old apartment in St. Louis. I got back to 90% before getting diagnosed by no longer using the HVAC. I moved to Seattle shortly after that where I started getting worse. I discovered mold avoidance and my husband and I threw away everything we owned and moved twice. I spent time in the suburbs of Phoenix, which helped a lot.

Eventually I was able to work full time and walk quite a bit though I wasn't back to normal. My scents sensitivity was pretty bad still and I started getting MCAS like reactions to so many things. I was at a steady level of functioning but not healthy for about a year.

In January I started developing EDS-like symptoms. My head started to feel unstable and I had to be very conscious of my posture as I walked. My hip got kind of out of joint and made it hard to walk for a few days but it eventually popped back in place. I had a finger joint feel like it popped out of place but it popped back quickly.

My connective tissue felt like it wasn't working. I couldn't sleep on my side or stand with my hands on my hips because it felt like my bones were just too heavy and slipping down. Like my body couldn't support itself. As I was walking I felt like I had to be precise in my movements so that my knees and hips would stay in place. It was sooooo weird and painful.

I have always shown minor signs of hypermobility (extreme flexibility and dislocated elbow as a child, hyperextended elbows, flat feet) but other than the dislocated elbow it had never affected my health or caused any problems.

I started having a lot of problems digesting food, especially fiber. I was really bloated after eating and I couldn't handle anything spicy. When I was living in a moldy apartment I had had stomach issues but this was much worse than anything I had experienced. I could only handle low-fiber, low-fat bland foods. My diet started to resemble the bland diet I had learned to prepare for my sister after her colon surgery.

At the same time I had a lot of headaches and a weird feeling of pressure behind my left eye. My optometrist had told me that I was at an elevated risk of acute angle closure glaucoma in my left eye because of its shape so if I ever felt pressure behind my left eye, I should get it checked as soon as possible. It's easily fixed if it's caught early but you can go blind if you wait a few days.

So I went to an ophthalmologist. It wasn't acute angle closure glaucoma (yay!!!!) but he saw cerebrospinal fluid pressure on the back of both of my eyes (it was more pronounced on the left). He called a colleague in to confirm the finding and referred me to get an MRI and see a neuro ophthalmologist.

This was in February and I had read Jeff's website and I knew Jen had had surgery as well. I was excited at the potential for a more concrete diagnosis but also nervous since I couldn't get the surgery due to my metal sensitivity.

While I was waiting to get the MRI and see the neuro ophthalmologist my husband and I decided to test out what had worked for me previously- going to the desert. Within 24 hours of being in suburban Phoenix the feeling of pressure behind my eye had subsided and I was able to enjoy going on a short hike. I even ate all of the spicy and fiber-loaded food I wanted!

From reading Dr. Afrin's Never Bet Against Occam I knew that connective tissue issues could be related to MCAS. I suspected that I was getting worse because the overflow drain my bathroom sink had taken on a new smell and seemed to be growing something since late December. My husband had tried everything to clean it but it's impossible to really get inside an overflow drain.

I was obviously better in Phoenix but I didn't know how much of that was just due to being away from my drain and how much was due to being in the desert and away from Seattle. After going to Phoenix for a second weekend (and feeling better again) I got my MRI and finally saw the neuro ophthalmologist.

My MRI was done lying down and after I had just returned from Phoenix so I wasn't feeling much pressure behind my eyes anyway. The neuro ophthalmologist didn't see anything but he noted that I had some white spots in my brain which are typical of people who have migraines.

I got the sense that he thought I was a hypochondriac and he didn't seem to believe in ME/CFS. He said that my scan looked perfectly fine and I didn't get the opportunity to ask for an upright MRI as a follow up.

At this point my husband and I decided to move to Phoenix instead of trying to get a second opinion. Even if the MRI had found the cerebrospinal fluid pressure the ophthalmologists initially saw I wouldn't have been able to get surgery. I didn't even have the problem when I was in Phoenix so I thought that would be the most effective treatment option.

As research suggests that cities have unique microbiomes I figured it was maybe plausible that Seattle was contributing to my health issues through an MCAS like reaction (https://www.npr.org/sections/health...sible-neighbors-each-city-has-unique-microbes). Without trying that hard to control my mold exposure in St. Louis I had been able to get to 90% but in Seattle I had struggled for two years even with mold avoidance and careful pacing.

Since moving to Phoenix in late March, my connective tissue issues are back to baseline. My stomach issues and pressure headaches are gone. My neck doesn't hurt and my head doesn't feel wobbly. My scents sensitivities and MCAS stuff have gotten a lot better but still aren't back to baseline.

Most of my ME/CFS symptoms are gone as well. I feel like I am slowly recovering but I am not ready to say I am in remission yet. At this point I don't meet most definitions of ME/CFS and I am continuing to improve. I feel like a true "Phoenix Rising" (sorry for the bad pun).

After all of this I think that environmental triggers were absolutely contributing to connective tissue problems for me. I think the cerebrospinal fluid pressure the ophthalmologist saw suggested that I was starting to develop some of the CCI like issues that others have had. It seemed like this was compounding all of my other symptoms.

I don't think it's possible to tease out what came first or one single cause. It felt like my history of health issues combined with environmental triggers ended up pushing me into ME/CFS and the neck issues were part of a downward spiral, where they were both a symptom and a cause. I am extremely lucky that I was able to find a way to get better.

I am SO grateful that Jen and Jeff shared their stories. It helped me realize how much worse I could get and it made me worry that I would do irreversible damage to my neck if I stayed in Seattle. I have NO idea if that is possible and maybe I was just being paranoid, but it pushed me to move to Phoenix and start recovering.

I don't think moving to Phoenix is going to be the answer for most people with these problems. Since MCAS and mold sensitivity varies by person it might be an awful place for many people even. I made the choice after spending a lot of time in Phoenix and carefully observing my body's reactions. I think we need a lot more research into environmental triggers, connective tissue, and CCI.
 
Messages
1,630
Likes
4,508
Thank you for starting this thread! I have a loooong anecdote with lots of speculation about my experience with environmental triggers, connective tissue stuff, and the hint of cerebrospinal fluid pressure but no confirmed CCI.
thank YOU for telling this story: fascinating! very insightful.

I am soon going to: the place where, one year ago: I felt less sick.

I will soon: get to report on- whether I will enjoy this environmental change, again!!

Recently reexamined the environmental contexts, here as well. I was exposed to a higher level of toxins for several months last summer during which all symptoms became very acutely bad.
 

Gingergrrl

Senior Member
Messages
14,268
Likes
42,629
Here is a transcript starting around 1:04 in the video:
Thank you so much @Silencio for taking the time to transcribe that part of the video and share it with us. I was really curious what Dr. Davis and Dr. K had said about this topic.

Thank you for starting this thread! I have a loooong anecdote with lots of speculation about my experience with environmental triggers, connective tissue stuff, and the hint of cerebrospinal fluid pressure but no confirmed CCI.
Thank you for sharing your story and I definitely relate to certain parts of it. My story is different but I really relate to having a series of immune triggers where it is hard to separate out what caused what.

From reading Dr. Afrin's Never Bet Against Occam I knew that connective tissue issues could be related to MCAS.
I bought that book when it first came out and am embarrassed to say that I never got a chance to read it. I had severe MCAS (where the final trigger was toxic black mold in a former rental) but it is now in remission from IVIG.

I was curious (only if you remember), what did Dr. Afrin say was the connection between connective tissue and MCAS. I have chronic neck pain (from other issues) but never felt it was connected to my MCAS (but am now curious)?!

I was obviously better in Phoenix
I have been to Phoenix twice (both times were over 20 years ago) but I was curious if you have (or had) POTS b/c Phoenix is so HOT :fire: ... Do you tolerate the hot weather okay?

I feel like a true "Phoenix Rising" (sorry for the bad pun).
I honestly had the exact same thought before you even posted it! :rofl:

I don't think it's possible to tease out what came first or one single cause.
I feel the same way in my case and I had a series of triggers of: severe car accident, neurotoxic reaction to an antibiotic that injured my triceps tendon, severe mono/EBV following a minor surgery, and then moving into a rental with toxic black mold.

I am SO grateful that Jen and Jeff shared their stories.
Likewise and I am very glad that they have shared their stories so openly as well.

I think we need a lot more research into environmental triggers, connective tissue, and CCI.
I agree. I am also now very interested in the connection between neurotoxic reactions to fluoroquinolone antibiotics and all of these connective tissue issues (not specifically just CCI but in general).
 

valentinelynx

Senior Member
Messages
926
Likes
2,352
Location
Tucson
I don't think moving to Phoenix is going to be the answer for most people with these problems.
Nope. I live in Tucson. Health crashed a few months after moving here from mountains above Salt Lake City, where I could hike 3 miles on very steep hills. Before that I lived my whole life in Northern California, got sick there, and had remission there. The heat in Tucson and Phoenix are brutal to me.
 
Messages
8
Likes
20
Without wanting to over simplify a phenomenally complex disorder..can strengthening neck and shoulder ligaments and chiropractic/nutritional intervention cure stenosis and instability without surgery?