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Doxycycline as a CCI treatment: low-dose doxycycline inhibits the MMP enzymes which break down collagen and elastin in ligaments

Hip

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Yes, I saw that one. I would guess it might vary quite a lot depending on the strain? I notice that you posted about high dose fish oil reducing MMPs. I’d like to try that, but I would be concerned about it reducing NK cell function.
Reduced NK cell activity might be a consideration. Though high-dose fish oil in the form of VegEPA has been studied as an ME/CFS treatment, where it helps some patients (maybe those with CCI?).
 

Hip

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Perhaps fisetin is also worth considering?

‘...fisetin, abundant in many fruits and vegetables. In addition to inhibition of MMP-14, fisetin inhibits MMP-1, MMP-3, MMP-7, and MMP-9, more efficiently than a naturally occurring MMP inhibitor tetracycline.’

https://www.ncbi.nlm.nih.gov/m/pubmed/24099040/
Looks very interesting.

But note that this is an in vitro study, a which means the MMP inhibition effects may not necessarily pan out in vivo, when this supplement is taken orally. The usual reason why in vitro studies do not pan out in vivo is that the concentrations of the compound used in vitro are too high to be obtained in vivo, because of limiting factors such as low bioavailability, or high plasma protein binding.

In fact, the study you linked to says:
Therefore, fisetin, as a potent natural inhibitor of MMPs, could be valuable as a lead compound to develop therapeutic drugs with greater bioavailability for treatment of MMP-related diseases
So they are saying that if you modified the chemical structure of fisetin to make it more bioavailable then it could be used as an effective MMP inhibitor.

This paper says that liposomal encapsulation of fisetin improves bioavailability.
 
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Looks very interesting.

But note that this is an in vitro study, a which means the MMP inhibition effects may not necessarily pan out in vivo, when this supplement is taken orally. The usual reason why in vitro studies do not pan out in vivo is that the concentrations of the compound used in vitro are too high to be obtained in vivo, because of limiting factors such as low bioavailability, or high plasma protein binding.

In fact, the study you linked to says:

So they are saying that if you modified the chemical structure of fisetin to make it more bioavailable then it could be used as an effective MMP inhibitor.

This paper says that liposomal encapsulation of fisetin improves bioavailability.
I see. And yes, now you mention it - I have read that fisetin has low bioavailability.

Also, not necessarily related, but it has helped this person with their fatigue: https://www.syndromea.org/2019/07/23/could-fisetin-be-a-new-treatment-for-me-cfs-autism/
 

Hip

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Anecdotal but I highly suspect I have CCI or AAI as I have all of the symptoms and get severe rebound after traction (which the CCI neurosurgeons say is the biggest indicator of severe CCI). I have been on doxycycline for about a year now and it’s been one of the most helpful medications I’ve ever tried for this illness. Every time I stop taking it, my severe neurological symptoms return. I started at a dose of 100mg twice a day, but am now on 100mg once a day.
 
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Yes, but here doxycycline is not used for its antibiotic effects, but because this drug is also able to lower levels of enzymes called MMPs — enzymes which break down collagen and elastin. So if you slow the breakdown process using doxycycline, then the ligaments may be better positioned to rebuild themselves.
@Hip any other ways to achieve the same result, e.g., via supplements or herbs? If so, have you tried any and what were the results?

I have a broad range of complaints/symptoms that overlap with your chronic mood virus and strangely the Chinese HIV-like virus as well, however I don't have the mental symptoms or only to a minor extent. Deterioration of (what I think is) connective tissue is a major one (i.e, receding gums, fragile skin that cuts easily, thinning/crepe paper skin on extremities, stretchy skin, slow healing wounds, cracking/clicking joints, flaky skin, cryptic/deshaped tonsils with sore throat, etc.). I was tested positive on Coxsackie B two years ago (1:320).

I already tried to slow down the progress with collagen supplements such as Great Leakes, but that didn't had any effect.
 

Hip

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@Hip any other ways to achieve the same result, e.g., via supplements or herbs?
Have a look at the bottom of the first post in this thread for supplements which inhibit MMPs. Whether they will have any effect, I don't know.

Without knowing which MMPs are causing the connective tissue degradation, it's hard to know which supplements to take.
 
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As one with some type of connective tissue disorder I find this thread fascinating. For those who aren't aware, there is the Cusack Protocol that is helpful for (some) with Ehlers Danlos Syndrome. It uses substances to strengthen collagen - doesn't address downreg MMPs. IIRC most of the protocol is silica (they use DE/ I use something else), fractionated aloe vera, VitC, mitake mushroom, and several other things. I've taken Regenemax silica supplement for over 15 years for hair loss, and I think it has helped me more than I know. Lately I switched to Living Silica - which was better but stopped working a month ago :-(

Oxalates have shredded my collagen - still recovering from that mistake. (Damn that spinach and nuts)
But the best I've felt in my life was after 5 months of MMS - which would not only be a bug killer (Lyme is a known collagen destroyer), but I have to wonder if it also dissolves oxalates, and now I'm wondering if it could down reg MMPs (kind of doubt it - though somehow low dose doxy dose this - hmm.) All in all this thread give me new thoughts. Back on MMS and now on low dose doxy.
I'm especially curious regarding @gbells use of McGAF - a substance I haven't heard of. I just spent some time on First Immunes' site and it sounds fascinating. Sadly, all of their info is dated around 2014. @gbells are you still using it? Was it worth it? I'm wondering if this would be available through a peptide distributor? If it just strengthens the immune system, I doubt it would work long term. I think most of us have bugs very deep inside, and that's why we need a constant source of bug killing protocols (in addition to individualized nutrition and sups for our unique DNA weaknesses) to really get to the source and destroy it. Interesting they note that you should not be on LDN while using McGAF.

I suppose if McGAF was the "cure" all ME/CFS patients would be all over it - but maybe not. Some things just get suppressed.
 

gbells

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As one with some type of connective tissue disorder I find this thread fascinating. For those who aren't aware, there is the Cusack Protocol that is helpful for (some) with Ehlers Danlos Syndrome. It uses substances to strengthen collagen - doesn't address downreg MMPs. IIRC most of the protocol is silica (they use DE/ I use something else), fractionated aloe vera, VitC, mitake mushroom, and several other things. I've taken Regenemax silica supplement for over 15 years for hair loss, and I think it has helped me more than I know. Lately I switched to Living Silica - which was better but stopped working a month ago :-(

Oxalates have shredded my collagen - still recovering from that mistake. (Damn that spinach and nuts)
But the best I've felt in my life was after 5 months of MMS - which would not only be a bug killer (Lyme is a known collagen destroyer), but I have to wonder if it also dissolves oxalates, and now I'm wondering if it could down reg MMPs (kind of doubt it - though somehow low dose doxy dose this - hmm.) All in all this thread give me new thoughts. Back on MMS and now on low dose doxy.
I'm especially curious regarding @gbells use of McGAF - a substance I haven't heard of. I just spent some time on First Immunes' site and it sounds fascinating. Sadly, all of their info is dated around 2014. @gbells are you still using it? Was it worth it? I'm wondering if this would be available through a peptide distributor? If it just strengthens the immune system, I doubt it would work long term. I think most of us have bugs very deep inside, and that's why we need a constant source of bug killing protocols (in addition to individualized nutrition and sups for our unique DNA weaknesses) to really get to the source and destroy it. Interesting they note that you should not be on LDN while using McGAF.

I suppose if McGAF was the "cure" all ME/CFS patients would be all over it - but maybe not. Some things just get suppressed.
My nagalase was 3x normal. It is only elevated in the case of viral infection (confirmed) or cancer (ruled out). Nagalase disables GcMAF and prevents antibody formation. At the time I was suffering from impaired immunity, getting infections from small cuts and I lost six teeth due to reinfection of past, successful root canals that had been fine for years prior (all repeat apicalectomies failed). My goal was to make a window where I could reprogram the T-cells with active antibodies that could be used for apoptosis and to get the tooth health stable. The problem was that it worked too well. This may have been because the treatment time (6 months recommended) was too long and had I stopped at 4 months it would not have been a problem, however at the end of treatment I developed systemic lupus erythematosis. So treatment was a mixed result. Tooth health stabilized and I didn't lose any more teeth but I had to be deal with the lupus. If I were doing it again I would not treat with nagalase for longer than four months. That being said, the viruses I have, EBV, HHV6, herpes zoster, and enterovirus block apoptosis across multiple pathways so it would be unreasonable to think that merely creating some antibodies would be effective in undoing the blocks. This is why I went on to continue testing different approaches to do it. I remain hopeful that if I get the apoptosis right the SLE will eventually resolve as antibody memory generally only lasts about 11 years if you stop the infection source.
 
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My nagalase was 3x normal. It is only elevated in the case of viral infection (confirmed) or cancer (ruled out). Nagalase disables GcMAF and prevents antibody formation. At the time I was suffering from impaired immunity, getting infections from small cuts and I lost six teeth due to reinfection of past, successful root canals that had been fine for years prior (all repeat apicalectomies failed). My goal was to make a window where I could reprogram the T-cells with active antibodies that could be used for apoptosis and to get the tooth health stable. The problem was that it worked too well. This may have been because the treatment time (6 months recommended) was too long and had I stopped at 4 months it would not have been a problem, however at the end of treatment I developed systemic lupus erythematosis. So treatment was a mixed result. Tooth health stabilized and I didn't lose any more teeth but I had to be deal with the lupus. If I were doing it again I would not treat with nagalase for longer than four months. That being said, the viruses I have, EBV, HHV6, herpes zoster, and enterovirus block apoptosis across multiple pathways so it would be unreasonable to think that merely creating some antibodies would be effective in undoing the blocks. This is why I went on to continue testing different approaches to do it. I remain hopeful that if I get the apoptosis right the SLE will eventually resolve as antibody memory generally only lasts about 11 years if you stop the infection source.
This is all interesting information to me. I had a period of time, 30 years ago, where my teeth were perfect to having over 22 cavities w/in a year or two. I wasn't terribly sick then. Lately, with my recent crash which seemed to be precipitated by collagen damage and whatever made my MMA skyrocket, my gums have really receded. Currently, my Sjogrens and Hashi's antibodies are gone. I don't know what to make of all this. But my vascular system is trashed.
 
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I cannot find any info to suggest that oxalates affect collagen or elastin. Where did you read that?
It was probably on Susan Owen's Oxalate Facebook group. She also started an Ehlers Danlos subgroup for oxalates.
I'm not sure there are any studies that "prove" it, but maybe, I can't remember. It's been a while since I've spent much time over there - it's FB rather than private forum. It may be just a hypothesis.

Theory would be that they know oxalates are extremely sharp and they will exit the body from any place - even through the eye ball. They have also found that they especially like to accumulate in damaged tissue. So if one has extremely sharp shards of oxalate present throughout their body, and they get too many or for another reason their body starts "dumping" oxalates - it would go to reason that they would cause tissue damage. Dumping oxalates can be extremely painful, and people have ended up in the ER due to too fast of dumping. Sadly, as in most medical science information, the mainstream information is extremely inaccurate. The best resources are Susan Owens and Sally Norton - these two are the go-to people on Oxalate information. (And if you watch several of Sally's videos, you'll notice she most likely has EDS. I've never heard her mention it, but it's obvious by her skin on her arms.) She suffered horribly eating vegetarian - is now pretty much carnivore.

In retrospect, I can trace back increases in hypermobility (and symptoms) to times of increased oxalate consumption. At least now I know better ;-)
 
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[QUOTE="gbells, .[/QUOTE]

I wonder why more labs aren't testing Nagalase - especially in the chronically ill? Labcorp doesn't even offer the test.