Connective Tissue and Hypermobility Brainstorm

if its lyme or lyme like inflammation related loss of connective tissue/ collagen/elastin etc -
our ability to repair tissues decreases with age - and if we have lyme etc that further inhibits this - its possible that at some point the rate of tissue repair starts to lag behind the rate of tissue damage leading to a kind of sudden rise in injuries and and easily injured state ( i have some of this going on myself - easily sprain things - get minor pulls or strains from hardly doing anything)

there are a number of things we can do to help offset it

inflammation

inflammation in the tissues is the likely driver - i recall reading buhners books and his monographs about cytokine cascades that are particularly powerful at breaking down collagen
cytokines like MMP-9 and others were involved
many of his herbs were targeted at blocking these exact cytokines
eg Knotweed inhibits MMP-9
there is a bit much to list here - the book is defo worth a read - but i recall he advises his main herbs for this as primary - but there was also a specific collagen support protocol in there also - had things like vitamin c and nettle leaf and horsetail herb in there
it i recall correctly curcumin also inhibits MMP-9

Diet
protein in diet - specifically animal protein ( as its v hard to get this amount and quality from vegetable sources ) and especially collagen
the recent reading into this i have done is that fully well active people need something in the region of 1.5g per kg of protein ( dry weight ) per day as we age to try to maintain muscle mass and connective tissue ( muscle mass is one of the best predictors of all cause mortality as we age)
in persons with lyme or lyme like illnesses - tissue turnover will be high due to the damage caused by inflammation caused by the infection - so i think its wise to aim near the top of this range.
few people eat this much protein.

supplements
i seem to recall the following were mentioned in the collagen support protocol
vitamin c
collagen
gelatine
glucosamine phosphate

exercise
i have tried to urge everyone with lyme to try to start some kind of exercise program.
i know this may seem unattainable or even unrealistic to many
but you would be surprised what your body can do, even if you are very sick or get PEM - if you start very low and increment very carefully
i mention it here as not only is it immunomodulating but it sends signals to your body to upregulate production of the very same compounds and structures that are currently getting weakened
strength exercises and load bearing exercises are best for this - but given you are damaging things easily - i would start with lighter weights and higher reps to help avoid this so perhaps enough that you can do a maximum of 20 reps.
it may be that you start with a single set of 10 or 20 reps every other day and increment from there.
even though i am also easily injured now - it may be of some reassurance that i have not given myself any injuries with controlled exercises in workouts - yet i have injured my hand doing simple things like trying to take the screw top of a jar!

so i would tend to look at it as a multi-pronged attach
reduce inflammation, ensure sufficient protein to ensure maximum rate of repair is in the diet, and supplement with a handful of things that are known to aid in new collagen synthesis.

i am doing all of these things and i am getting stronger week by week - not weaker - so it seems to work

I've always had loose joints. I assume it's genetic, and probably related to the NCF1 and vitamin D thing (ie 7q11.23 mutation).

Genetic rearrangements of the 7q11.23 Williams Syndrome Region are very common in the general population (5-10%). It's often assumed that most of these genetic changes are asymptomatic. I suspect it's not entirely asymptomatic, as I do have some symptoms.

saraeli said...
Thanks for the discussion, Garzie. It's helpful to feel like I'm not alone in this project!

Do you have hypermobility? Or do you feel like your connective tissue issues are just from a combination of age and tick-borne infection damage?

I was thinking that age-related connective tissue degradation does not usually happen bilaterally and come on suddenly, but maybe it can?

Hi Sara

for me its less a case of hypermobility and more a case of stiffness and reducing flexibility -
the issue seems to be increasing with duration of illness

its hard to separate from what might have happened anyway due to aging - as i have got 10 years older in the meantime - and we cannot know the counter factual.
however - feel i would be in better than average shape in terms of both strength and flexibility if it were not for lyme - as i have been those things all my life before the illness

i think that in two individuals -both symptoms - increasing stiffness or pathological hyper mobility - could be due to the same root causes - but just depend on how our bodies repair the damage - eg as a simple example - more scar tissue could lead to stiffness - less scar tissue but still damage to structural elements could mean hypermobility / weak easily strained tissues.

i do think it possible for us to reach a kind of tipping point where repair no longer keeps up with damage - but if its very sudden offset i think it perhaps points to something else that has changed more recently

if diet contains plenty of protein already - and there is nothing else obvious - i wonder if anything could have changed with digestion / absorption - that could lead to functional nutrient deficiencies in protein or something else that prevents effective structural repair

Girlie's example shows gut based issues with inflammation and absorption can certainly drive these symptoms

for example - have you had any bouts of gut symptoms recently - food poisoning episodes or perhaps had a virus which can damage the gut, recently ( COVID is known to do this )


to my knowledge EDS, if truly genetic in origin, manifests early in life - eg problems supporting weight on ankles - special footwear and or braces needed - very obvious hyper extending joints at elbows / fingers
- that kind of thing.

my guess would be that supposed EDS that manifests later in life - eg middle age is really some other chronic condition that is misdiagnosed - as medics do not understand what else it could be so use it as one of the "dumping ground diagnosis"

i see it pop up frequently in the ME/CFS forums as well

just thinking out loud