Jennifer Brea: I have craniocervical and atlantoaxial instability

[JenB]

My MRI was a screening tool. More important to my diagnosis were the two methods described here:

Invasive craniocervical traction + fluroscopy: https://link.medium.com/uCxwKf9BE1
Intracranial pressure bolt test: https://link.medium.com/hlbGW9bCE1

@JenB Would that probably mean that even when someone is underweight from malnutrition and has immense muscle loss from being bedridden, there would be no instability just from that? That there *has* to be ligament laxity?

I don’t know the answer to that question. What I’ve heard doctors say in talks is that deconditioning can reveal instabilty that was already there since strong muscles can often compensate for unstable joints—to a degree. However, I think they would say that fundamentally, competent ligaments should be able to stabilize a joint, even when muscles are very weak. However, I don’t know. This is something I would need to ask about and/or do some research on.

However, if your questions is, “can deconditioning contribute to symptoms caused by instability?” The answer is, “Yes, absolutely.”

There are of course people who are very low weight/weak and don’t have CCI. And then there are people like Julie Rehmeyer who are very very strong and not deconditioned yet have instability.

@jeff_w do you know something about this?

 

[frozenborderline]

One possible link between weakened connective tissues and the viruses in ME/CFS that infection can up-regulate production of connective-tissue degrading enzymes. Coxsackievirus B for example ramps up production of various matrix metalloproteinases (MMPs), which is a whole family of enzymes that destroy connective tissue proteins like collagen, elastin and gelatin.

Coxsackievirus B infection increases the enzymes MMP-2, MMP-3, MMP-8, MMP-9 and MMP-12. These enzymes are secreted as part of the immune response.


I had my own experience of probable increases in connective-tissue degrading enzymes after catching my virus: about 12 to 18 months after I caught the Coxsackie B4 virus which triggered my ME/CFS, I developed a sudden-onset crêpe paper-like wrinkling of the skin all over my body, but most prominently on the top of my hand. Here is a picture I took years ago of these sudden-onset fine wrinkles on my hand:

Sudden-onset crêpe paper-like fine wrinkling on my hand,
caused by my CVB4 viral infection
View attachment 30055​

Some friends and family who caught the same virus as me also developed these crêpe paper wrinkles (except those under 30). The wrinkles look very similar to a disease called mid-dermal elastolysis, which is caused by loss of elastin in the mid-dermis layer of the skin. So my hunch is that elastin is being degraded in my skin as a result of MMP enzymes induced by the virus.

I also developed sudden-onset receding gums (periodontitis) within just months of catching this virus. Periodontitis in part is caused by MMP enzymes eroding gum connective tissue.

My rapid-onset receding gums from viral infection
View attachment 32857​

Periodontitis is treated with low-dose doxycycline 20 mg daily, which inhibits various MMPs.

I have also heard occasional stories of ME/CFS patients losing their fingerprints; possibly that is also due to connective-tissue degradation. And in Dr Ritchie Shoemaker's chronic inflammatory response syndrome(CIRS), MMP-9 is often high (he treats high MMP-9 with a low amylose diet and high dose fish oil).

I've detailed some MMP inhibitors in this post.



Another way that a virus might cause connective tissue dysfunction or degradation is through infecting fibroblast cells. Fibroblast cells play a primary role the manufacture and maintenance of connective tissue: these cells 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 may also explain why CCI/AAI may appear in ME/CFS patients with coxsackievirus B infection.

So it seems to me there may be two ways a chronic infection can lead to connective tissue dysfunction: via up-regulation of MMPs, and/or by persistent infection of fibroblasts.

I've been reading up on mmp-9 inhibitors and it seems like chelation is part of it bc some of the enzymes need certain metals to function. Very curious about this. Maybe it deserves its own thread
https://en.m.wikipedia.org/wiki/Metalloprotease_inhibitor

Aside from that it does seem like out of all of th meds your listed, the periostat/low dose doxy is most promising. Wish I knew where to obtain

 

[Hip]

Aside from that it does seem like out of all of th meds your listed, the periostat/low dose doxy is most promising. Wish I knew where to obtain

You can just buy regular 100 mg doxycycline tablets, and cut the tablet into 4 pieces of 25 mg, and each piece is your low dose doxycycline. Periostat is just 20 mg of doxycycline.

Whether it will have any benefits for loose ligaments, that's another question.

 

[gbells]

I also developed sudden-onset receding gums (periodontitis) within just months of catching this virus. Periodontitis in part is caused by MMP enzymes eroding gum connective tissue.

I had that too and am positive for coxsackievirus B. A course of GcMAF was how I was able to stabilize the gums at the time. Chronic antibiotics decimate intestinal bacteria which also causes yeast overgrowth and encourage the growth of antibiotic resistant bacteria which can make antibiotics for infections ineffective when you need them.

I remember telling you guys earlier that I thought the reason ME patients were responding to the AAI fusion surgery was that the ME viruses were making their ligaments loose. Good to see my hunch confirmed.

 

[frozenborderline]

Chronic antibiotics decimate intestinal bacteria which also causes yeast overgrowth and encourage the growth of antibiotic resistant bacteria which can make antibiotics for infections ineffective when

Like Any drug or "natural" substance, there are dose dependent side effects. And some antibiotics are worse than others. Personally I feel that doxycycline, minocycline, and amoxicillin are among the safest antibiotics with potent anti inflammatory effects

 

[gbells]

Like Any drug or "natural" substance, there are dose dependent side effects. And some antibiotics are worse than others. Personally I feel that doxycycline, minocycline, and amoxicillin are among the safest antibiotics with potent anti inflammatory effects

You're not using it as an anti-inflammatory, it is to inhibit the MMP enzymes. Use time-released C3 curcumin for inflammation. I'm still not convinced it's worth it. You could get covid and die from too much inflammation as they are related to healthy gut flora. Would also lower neurotransmitters which increases depression.

 

[frozenborderline]

u're not using it as an anti-inflammatory, it is to inhibit the MMP enzymes. Use time-released C3 curcumin for inflammation. Still not convinced it's worth it. You could get covid and die from too much inflammation as they are related to healthy gut flora. Would also lower neurotransmitters which increases depression

Mmp-9 IS inflammatory. And most of what you're saying is opinion until you provide a citation.
Lower which neurotransmitters that cause depression? Bc last time I checked we had no idea which neurotransmitters actually do cause depression, and one of the newer candidates is glutamate, which is lowered not raised by amoxicillin

 

[frozenborderline]

How do you know curcumin is safer and works for the same purposes? Is it just naturalistic bias/fallacy?

 

[gbells]

How do you know curcumin is safer and works for the same purposes? Is it just naturalistic bias/fallacy?

Curcumin's safety profile is well known and it is generally recognized as safe. Look it up. Much better than antibiotics for inflammation.

Side effects for 30% of people are:

Seven subjects receiving 500–12,000 mg in a dose response study and followed for 72 h experienced diarrhea, headache, rash, and yellow stool [19]. In another study, some subjects receiving 0.45 to 3.6 g/day curcumin for one to four months reported nausea and diarrhea and an increase in serum alkaline phosphatase and lactate dehydrogenase contents [66].

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/

Much better to try it first.

 

[frozenborderline]

Curcumin's safety profile is well known and it is generally recognized as safe. Look it up. Much better than antibiotics for inflammation.

Look I realize we are all very sick here and cant do the research for other people ,but when making a dramatic or extraordinaryclaim, one needs to cite something. That particular study doesn't show curcumin to be more effective at the specific thing I'm wanting than doxycycline , nor safer

 

[gbells]

Look I realize we are all very sick here and cant do the research for other people ,but when making a dramatic or extraordinaryclaim, one needs to cite something. That particular study doesn't show curcumin to be more effective at the specific thing I'm wanting than doxycycline , nor safer

I was giving you the side effects profile. Just google it. Curcumin's effects on inflammation are proven.

It doesn't have to be "more effective" it just needs to be effective and safer which it is provided you don't have serious side effects from it.

 

[frozenborderline]

was giving you the side effects profile. Just google it. Curcumin's effects on inflammation are proven.

It doesn't have to be "more effective" it just needs to be effective and safer which it is provided you don't have serious side effects from it.

Inflammation means a million different things. Does this help with tryptase and matrix metalloproteinases?

And I think it would have to be at least as effective, for the side effect profiles to be something worth considering. If it's less effective, it may not even worth it no matter how safe it is.

Everything has side effects. I'm just asking what studies show this compared to doxy side by side for safety and efficacy at lowering those types of inflammatory cytokines and or tryptase

 

[gbells]

Inflammation means a million different things. Does this help with tryptase and matrix metalloproteinases?

As I said before, no it doesn't help with those, only inflammation, particularly from increased Nf-kb due to chronic viral infections, which it reverses. I wasn't aware of the side effects as I've only gotten nausea when I overdosed so I'm glad I was able to review it.

Anyway, I think the best strategy is to use cell growth inhibitors and apoptosis checkpoint unblockers to kill off the infected cells via immunotherapy. However, that hasn't been released publically yet so it isn't available.

If it were me I would use licorice to slow the viral spread and oxymatrine as a cell growth and viral inhibitor to counter the coxsackie virus but only taken at a two days on two days off intervals to not impair wound healing too much. Also curcumin to counter the viral inflammation.

If you go the doxycycline route you will probably develop antibiotic resistant bacteria and are helping to reduce the effectiveness of antibiotics (along with the other problems I mentioned). Most doctors won't go along with that as it is considered a bad medical practice.

Doxycycline is a valuable drug but should be used only for a few weeks for serious bacterial infections (I've used it up to six weeks for this since I am on the immunosuppressant methotrexate for lupus) not viruses. @Jonathan Edwards