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Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

Hip

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Some thoughts —eating collagen , proline. Hyaluronic acid injection into ligaments?
Vitamin c intake

Bpc-157 , a peptide That @Hip mentkoned. Also nandrolone , an anabolic steroid often used in aids patients for muscle wasting, but also has progestogen effects.
My feeling is that supplements which are touted to help tendon and ligament repair probably will not do much to help strengthen the assumed lax ligaments in CCI/AAI, with perhaps the exception of BPC-157.

20 years ago, due to a yoga mishap, I managed to permanently stretch the ligaments which connect my right pelvis to my spinal column (at the sacroiliac joint). Ever since, my right pelvis has remained slightly loose, and when I walk there is almost a limp.

At the time, I started looking into supplements that might potentially aid healing of a stretched ligament, and found lots of them: vitamin C, silica, copper, goto kola, xylitol, lysine, proline, vitamin B2, glycine, PABA, glucuronolactone and arginine (to boost NO which helps ligament healing). So I took a cocktail of all of these for some time, but this did not help one iota in improving my stretched pelvic ligaments.

So in my experience, healing stretched or lax ligaments is not really aided by nutrition.


I've not properly tried BPC-157 for my pelvis, but I suspect it might have mild benefits (it caused some anxiety side effects when I took it, so had to stop). I really need to get some prolotherapy done to try to fix my pelvic girdle, but this is now low priority for me, since ME/CFS is always the main issue.

There is also a new alternative to prolotherapy called prolozone, which injects ozone rather than glucose into the ligaments, and is less painful.


Recently I found that the oral supplement GABA at 100 mg daily increases elastin synthesis and dramatically increases elastin fiber formation in human skin fibroblasts: see here. So this is a new one on my radar to try for both my loose girdle, and I guess potentially useful for CCI/AAI.

Fibroblasts are the cells which secrete substances like collagen and elastin needed to maintain and repair connective tissue.


Pulsed electromagnetic fields have been shown to help ligament healing, but when I tried this, I did not notice much improvement in my loose pelvis.


Intriguingly, the audio frequencies at which cats purr are supposed to increase bone, tendon and ligament healing. The frequency of 120 Hz is shown effective for tendons, and this is one of the harmonics of normal cat purrs (which have a fundamental frequency of 25 to 50 Hz). This healing effect of purring is thought might explain why cats heal faster and better than dogs. See this article.

So perhaps setting up a loudspeaker close to your neck playing a 120 Hz tone might promote ligament healing and strenthening in cases of CCI/AAI.



But my feeling is that if the CCI/AAI in ME/CFS patients is due to lax ligaments, then we need to figure out what it causing the laxness, and address that. (Though note that lax ligaments are not the only cause of CCI/AAI; it can also be caused by soft bones).

I suggested in this post that connective-tissue degrading enzymes called matrix metalloproteinases (MMP) might be the cause of the lax ligaments in CCI/AAI. These MMP enzymes are secreted by the immune system during viral infection.

In this post I listed some agents that can inhibit MMP. The classic MMP inhibitor is low-dose doxycycline.

But there are also other enzymes which can break down connective tissue, such as neutrophil elastase, and fibroblast elastase. One Dr Kenny De Meirleir study I believe found elevated neutrophil elastase in ME/CFS. So neutrophil elastase might be the culprit causing CCI/AAI in ME/CFS. Indole-3-carbinol (I3C) is a potent neutrophil elastase inhibitor.

If there is a process constantly breaking down connective tissue (such as these MMP enzymes or neutrophil elastase), then you probably want to address that first, to prevent the continued breakdown, as well as trying to boost the repair and re-building processes of connective tissue.
 

brenda

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I believe that my own case of increasingly surety of craniocervical problems and EDS, hopefully confirmed by my consultation with a rheumatologist in August, ànd who will hopefully refer me on to a geneticist for diagnosis for vascular involvement (family aneurisms) has responded positively to lifestyle changes.

I believe this is due to epigenetics and that accidents, environmental assaults from chemicals etc and infections, will cause the faulty genes to become more expressed, and in the same way, less expressed when these issues are addressed with lifestyle changes.

I have seen much improvement in my condition when l made very big reductions in my exposure to chemicals in my home and diet. I do not use any chemicals at all now for personal hygiene, and use nothing but pure soap for skin and hair. Commercial products also disrupt hormones according to Ray Peat so l use rubber gloves when l wash dishes and clean my home along with natural products l make myself.

I distill my drinking water, have a shower filter and eat an organic diet of unprocessed foods, and little or no alcohol and no medications, using natural products instead. I have tried various dietary protocols and improved but did not heal as much as l desired, but understand now why this may not be possible as long as l live in a cold northern urban setting which is unlikely to change.

As surgery will be out of the question for me, l am keen to find further ways of keeping my genes at bay.
 

Wayne

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...environmental assaults from chemicals etc -- have a shower filter
I also use a shower filter, but have mostly avoided baths because of the chlorine. I recently discovered that a rather inexpensive product called Sodium Thiosulfate (STS) is very effective at dechlorinating water, and has other remarkable detoxification capabiliies. The above link will take you to a recent post of mine in which I describe it a bit more.
 

debored13

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Intriguingly, the audio frequencies at which cats purr are supposed to increase bone, tendon and ligament healing. The frequency of 120 Hz is shown effective for tendons, and this is one of the harmonics of normal cat purrs (which have a fundamental frequency of 25 to 50 Hz). This healing effect of purring is thought might explain why cats heal faster and better than dogs. See this article.
wow! I had actually been wondering what the physiological purpose of catnpurring was recently and wondering if it might be healing. I spend a lot of time observing my cat and wondering why she’s such a healthy beast, and why I’m not. Certainly food for thought.
But my feeling is that if the CCI/AAI in ME/CFS patients is due to lax ligaments, then we need to figure out what it causing the laxness, and address that. (Though note that lax ligaments are not the only cause of CCI/AAI; it can also be caused by soft bones).
In my case I think it was gradual, caused by inflammation from mycotoxins or other environmental agents, and also my initial lyme infection. What caused it to worsen in December I have no idea though. Either way I first plan to remove myself from mycotoxins before trying any of these collagen rebuilding supplements.
In this post I listed some agents that can inhibit MMP. The classic MMP inhibitor is low-dose doxycycline
Only doxycycline or should beta lactam antibiotics inhibit mmp-9
?
 

brenda

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@Wayne "STS is the compound that gives sulfur hot springs their rotten egg smell. Don't know if you've ever been to one of those springs--which are reputed to have great healing qualities--but you can create your own hot springs just by buying a few pounds of the STS crystals and putting them in your bathtub. And it's great that it dechlorinates the bathwater besides! "

Yes I have been to one of these springs in Greece and felt benefits. Many thanks for your tip I will try it. I need to avoid fluoride as well though.
 

Asklipia

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My understanding is that it was presumed for a long time oral ingestion of BPC-157 would work, but likely not nearly as effective as injecting it. That thinking was never proven however, and now seems to be shifting. Apparently many people are getting excellent results from oral ingestion alone.
On Reddit there is a discussion about BPC-157 creating eye problems even orally, because it seems to increase angiogenesis.
 

Hip

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Only doxycycline or should beta lactam antibiotics inhibit mmp-9
I am not sure, but doxycycline is the only one I know that's used clinically. The receding gums of periodontitis is in part due to connective tissue erosion from MMPs, so one periodontitis treatment is the drug Periostat, which is actually just 20 of doxycycline.
 

debored13

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I am not sure, but doxycycline is the only one I know that's used clinically. The receding gums of periodontitis is in part due to connective tissue erosion from MMPs, so one periodontitis treatment is the drug Periostat, which is actually just 20 of doxycycline.
Is there a site that sells doxycycline that ships fast? I know amoxicillin for fish is widely available. Some of these online pharmacies, while legit , take forever to ship.
 

Hip

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Is there a site that sells doxycycline that ships fast? I know amoxicillin for fish is widely available. Some of these online pharmacies, while legit , take forever to ship.
I've never had a problem with slow shipping from the pharmacies listed on the pharmacies thread. It usually takes around 10 days to get the UK with most of these pharmacies. There are also expedited shipping options available at some of the pharmacies.
 

Hip

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wow! I had actually been wondering what the physiological purpose of catnpurring was recently and wondering if it might be healing. I spend a lot of time observing my cat and wondering why she’s such a healthy beast, and why I’m not. Certainly food for thought.
Yes, it's quite interesting isn't it.

One article I read says this healing effect of certain sound frequencies may solve the 3000 year old mystery of why cats purr.

I'd completely forgotten this, but found the article in my computer folder containing info on boosting connective tissue repair.
 

debored13

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@Hip when you said
Seems there's quite a few Reddit threads on this BPC-157 eye issue. I have not got time at present to read through them to get the conclusion.
Hmm I had thought that bpc-157 was fairly low risk at least short term.

I was going to talk to my doctors office about stockinrg compounded bpc-157 as they offer some other peptides. However that may take awhile so id like to figure out how to gauge safety of the stuff sold on bodybuilding sites. Ben greenfield mixes his up w bacteriostatiic water, so I guess it is unstable in solution or something?
 

Hip

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Are there bodybuilding sites that offer certificate of analysis or whatever?
Don't know about certificate of analysis, but I've found www.eroids.com a very useful review site of body-building suppliers of peptides and hormones. Remember though that these body-building sites sell peptides under the understanding that they are not for human consumption. That's how they are legal able to sell them. I've personally bought a range of different injectable peptides from these sites.
 

debored13

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@Hip so I am still a little unsure about whether I want to inject stuff from bodybuilding websites. However, my doctors office, which doesn’t offer bpc-157 yet, offers thymosin beta 4 from a compounding pharmacy. Is there any convincing evidence that systemic application of this peptide could help with ligamrnt repair specifically? The only paper I found on it found local injections to help repair ligaments in rats. I have some qualms about doing a local injection in the craniocervical area for obvious reasons.
 

Hip

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Is there any convincing evidence that systemic application of this peptide could help with ligamwnt repair specifically?
It did not know that thymosin beta 4 (TB-500) had healing effects on ligaments and tendons, but when I Googled there was some indication that it does.
 

debored13

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It did not know that thymosin beta 4 (TB-500) had healing effects on ligaments and tendons, but when I Googled there was some indication that it does.
Seems thymosin beta 4 is slightly different than tb 500.

It also seems like they haven’t quite figured out it’s role yet. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5543423/
In this paper they discuss the contradiction of it being elevated in RA but also not knowing if cause or effect. Is seen to rise in conjunction w mmps but could be regulatory response. Promotes survival in septic shock which I think is always a good sign in terms of immune modulation. I wonder about combining it with the thymosin alpha 1 which is more immune stimulating and antiviral.
 

Hip

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Seems thymosin beta 4 is slightly different than tb 500.
It is, but TB-500 is the one that's generally available. TB-500 is more accurately described as a thymosin beta 4 fragment: it contains the key peptides found in thymosin beta 4.

When I was taking TB-500, at around 2 mg once weekly, looking at my notes in my diary at the time, my comments were general positive. I only tried it for a short period, unfortunately.
 

nandixon

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There are quite a few studies showing immune dysfunction, in particular immune suppression, associated with spinal cord injury. Some immunological findings for SCI, including reduced natural killer cell function and also a sort of perpetual/trapped inflammatory state that the spinal cord gets itself into and is unable to resolve once injured, seem to overlap with ME/CFS.

So to the extent it may be possible to think of CCI/AAI, cervical spinal stenosis (and potentially lumbar spinal stenosis), etc., as perhaps a form of chronic mild SCI, then looking at drugs that are used for SCI might be useful.

I just started looking at it and have to think about it some more, but first on the list to try may be 4-aminopyridine, which is used in both SCI and also multiple sclerosis:

Fampridine has been shown to improve visual function and motor skills and relieve fatigue in patients with multiple sclerosis (MS). 4-AP is most effective in patients with the chronic progressive form of MS, in patients who are temperature sensitive, and in patients who have had MS for longer than three years. Common side effects include dizziness, nervousness and nausea, and the incidence of adverse effects was shown to be less than 5% in all studies.[18]

4-AP works as a potassium channel blocker. Electrophysiologic studies of demyelinated axons show that augmented potassium currents increase extracellular potassium ion concentration which decreases action potential duration and amplitude which may cause conduction failure. Potassium channel blockade reverses this effect. A study has shown that 4-AP is a potent calcium channel activator and can improve synaptic and neuromuscular function by directly acting on the calcium channel beta subunit.[19]

MS patients treated with 4-AP exhibited a response rate of 29.5% to 80%. A long-term study (32 months) indicated that 80-90% of patients who initially responded to 4-AP exhibited long-term benefits. Although improving symptoms, 4-AP does not inhibit progression of MS. Another study, conducted in Brazil, showed that treatment based on fampridine was considered efficient in 70% of the patients.[20]
https://en.wikipedia.org/wiki/4-Aminopyridine

There's also a newer analogue in the pipeline. See: https://www.google.com/amp/s/medica...-06-treatment-spinal-cord-injuries-animal.amp

I have a feeling at this point that the number of cases of ME/CFS that involve some sort of mechanical injury to the CNS as part of the underlying disease mechanism may be pretty significant, like at least 1 out of 10 patients to maybe 1 out of 3 or even higher (just a speculative guess based on everything I'm seeing so far).