Cusack protocol for EDS—reports from anyone trying it

[Sushi]

I have hEDS and recently started this experimental protocol. It is not a cure but an ongoing treatment using 8 supplements. There is a Facebook group called Ehlers Danlos Syndrome and the Cusack Protocol. They recommend starting each supplement separately with a week in between so I don’t have them all on board yet.

I have seen some posts here on this protocol in relation to CCI but I’d like to hear from anyone who has tried it for any reason. So far I have noticed more stability in my knees and SI joints. Since at this point we are at the stage of “let’s try anything that might give a 10% improvement,” this protocol seems low risk though it is not cheap as an ongoing treatment—but then neither is physiotherapy and even though a good physiotherapist can get me out of pain, it only lasts about a day before I sublux again.

Here is a list of the supplements:

Componentsedit source]

• Polysaccharides:
  • Either 100% fractionally distilled Aloe vera or aloe vera juice capsules
  • or maitake mushroom[2]
• Lactobacillus rhamnosus GG (L-GG) - a probiotic (10-15 billion cfu)
• Pyrroloquinoline Quinone (PQQ)
• L-arginine
• D-Ribose
• Lion's mane (hericium erinaceus, a type of mushroom)
• Diatomaceous earth (food grade DE) - a powdered fossilized algae)
• Glucosamine chondroitin[3]

• https://me-pedia.org/wiki/Cusack_Protocol#cite_note-slides2016-3

Components

 

[Judee]

it only lasts about a day before I sublux again.

I was thinking about this last night...not the protocol (sorry) but the subluxing. It seems like I walk from one room to the next and my back or knee has subluxed. Okay, that might be an exaggeration...but not much.

Hope you get some feedback that's helpful.

 

[Mick]

So, it looks like I have vEDS - it is possible that I also have mutations for it but they earlier went unnoticed because my whole genome sequencing was basically one of the first in my country and I totally regret that I wanted to be the first. It was all a mess and so I now found these mutations but I don't know what to do about them. I don't want to repeat WGS because the interpreted data is not interpreted correctly.

Anyways...

I used to take all of these supplements and continue to take some of them (though not the core supplements, ie Polysaccharides) and I am going to try these core supplements again, namely the mushroom and not the aloe vera as this caused me a terrible reaction.

If Diatomaceous earth causes you trouble, you may simply take soluble silica in higher doses.

For me, the best of these for now is PQQ - though there was a lot of trouble with it because it also caused some kind of reaction. But now it is under control and it really helps my collagen heal, ie. joints and especially muscles.

Unfortunately, I strained myself worse than I used to so there goes my improvement... But I was able to do that...

So now I need to take this mushroom and see...

 

[xebex]

i have some kind of thoracic instability as part of my ME. Whether the ME causes the instability or the instability causes the ME I don't know. Anyway I started the maitake 4 weeks ago and within a few days noticed I was able to stand up for longer and my spine didn't feel so "wonky." I also noticed that other parts of my body feel more relaxed, I'm assuming the ligaments strengthened so the muscles could stop spasming. I think I'm so used to the muscles spasming I don't realise most of the time except for in my back where they hurt.

Anyway, after a couple of days of feeling good, Maitake induced immune activation set in. Immune symptoms which had been in remission for probably 2 years all came flooding back. POTs came back, thumping back of head headache which is worse when I bend over came back. Body aches and general flu-like feeling. I took for 2 more weeks hoping it would calm down but was getting worse, constant sneezing, and flu like feeling, I stopped the maitake a week ago and still have this immune activation, though the sneezing has gone and body flu has gone now it's just in the back of my head and POTs. I really hope I haven't permanently "boosted" my immune system, it's certainly not happy. On a good note spine still feels quite stable, and I feel that I would have improved if hte maitake hadn't caused this immune activation. I'm going to carry on with the protocol but take the aloe instead.

 

[Mick]

Maitake induced immune activation set in. Immune symptoms which had been in remission for probably 2 years all came flooding back.

Yeah, about that. That happened to me too. This immune activation caused flu-like feeling, like you said, and muscle and tendon pain (or rather inflammation).

That's why I tried aloe vera but it made me even worse (unbearable stomach aches and cramps).

So, looks like, there is no way for me to take any of the polysaccharides (now I remember why, thanks for reminding me) but I have an idea... I can't take aloe vera for sure but perhaps taking maitake every other day would be a reasonable compromise. If every other day fails then every third day just to get all the benefits and none of the side effects...

 

[Mick]

I also wanted to point out that this protocol doesn't contain your basic supplements that are recommended normally for EDS. That's the problem. So it's not like you should only take these supplements and no other basic supplements.
For best results, do just the opposite.

So, what else should be taken...
- vitamin C (out of the question for me because it will aggravate my immune system)
- hydrolysed collagen (or at least glycine but it's not as good as collagen)
- hyaluronic acid
- CoQ10
- other that I don't remember now

If you have trouble with joints:
- chondroitin
- glucosamine
- in some cases type 2 collagen
- manganese
- msm
- omega-3
- direct anti-inflammatory supps: PEA, avocado unsaponifiables (which should be taken as a last resort after taking all of the above because why would you want to spend a lot of money on these new and modern supps if the above simple supps may have worked already)
- other that I don't remember now

 

[xebex]

Yeah, about that. That happened to me too. This immune activation caused flu-like feeling, like you said, and muscle and tendon pain (or rather inflammation).

That's why I tried aloe vera but it made me even worse (unbearable stomach aches and cramps).

So, looks like, there is no way for me to take any of the polysaccharides (now I remember why, thanks for reminding me) but I have an idea... I can't take aloe vera for sure but perhaps taking maitake every other day would be a reasonable compromise. If every other day fails then every third day just to get all the benefits and none of the side effects...

Intersting you had the same response to maitake, so the aloe caused immune activation too for you? I took the aloe first, only for month and it did nothing which I why I switched, the maitake got working within a couple of days! Yes you could take it every other day see if that caused a lesser response. I’d be nervous of that though. Gonna try the aloe again for longer this time. I take many of the supps already and luckily I don’t have joint issues. Good luck!

 

[Mick]

Intersting you had the same response to maitake, so the aloe caused immune activation too for you?

Er, no. I didn't even get to the point where aloe could cause me immune activation because after the first spoon of it I got such terrible stomach aches and cramps that I was 100% sure that aloe is not for me. I tried it again at a smaller dose - still no. So this bottle sits in the fridge for like 2 years now and is not going to be used up.

For now, I'd rather go with other supps from the list (both Cussack's and mine that I wrote above) and see where it gets me. And I will also look for other supplements - I take for example elastase inhibitors - I came to conclusion that I need to take them on my own and now I see that there are threads devoted to this problem. I take green tea, green coffee, pterostilbene. But as I can see, also other supps that have this action can be taken.
I am also heterozygotic for antitrypsin deficiency so I have a partial deficiency but probably all of my symptoms are worse because of that mutation and elastase inhibitors also help in this respect.

Having said all that (supplements are good and you should take them, without them I'd be dead or had a severe disability - I'd stay in bed, and I was bed-bound for 2 years, and now I'm not, so this is an improvement but it's still a very sad sad life because you can't go anywhere or do anything because you get exhausted in about an hour and start feeling weird - I don't know if it's dysautonomia or something else...), I must admit that I don't follow exactly my own recommendations. There are too many pills to take (I simply forget to take some of them) and it's all too expensive (mitoQ being the most expensive of them, and I take it, and it helps but it helps even better when you take short breaks from it). So I need to stick to my own recommendations better, unfortunately.

But if anyone has any other idea what else should be taken you are welcome to share. Surely, I will try it.

 

[xebex]

@Mick Wow that’s an intense reaction to the aloe!

the maitake made a very obvious difference to my instability quickly. I’m also most thinking it was worth the immune activation and maybe I’ll just take it at half dose for a week every month or so. It’s the beta glucans in the maitake which causes the immune activation BTW.

i don’t really have much other supp advice except NAC and SAMe (with cofactors) have been helpful to me. I don’t think I have Eds though, I do believe that ME or rather the immunes state that causes ME causes collagen breakdown. Also I read story of a woman with CCI from whiplash and NOT EDS fixed her ligaments with maitake and no longer has to take it. This give me hope.

 

[Mick]

I’m also most thinking it was worth the immune activation and maybe I’ll just take it at half dose for a week every month or so.

I forgot to mention that before but the way maitake/aloe works is inherently associated with immune activation. These polysaccharides cause immune cells (or fibroblast cells - don't remember) to release growth factors. But immune cells are also affected. So there is no way around it. I advice to find out how this protocol works - the rationale behind using maitake/aloe is described. I will have to read it again too...

 

[xebex]

I forgot to mention that before but the way maitake/aloe works is inherently associated with immune activation. These polysaccharides cause immune cells (or fibroblast cells - don't remember) to release growth factors. But immune cells are also affected. So there is no way around it. I advice to find out how this protocol works - the rationale behind using maitake/aloe is described. I will have to read it again too...

ah I see, that makes sense, I've noticed now as the immune activation is wearing off the instability feeling is coming back - this also suggests to me that ME creates an acquired EDS type illness.

 

[maple]

@Sushi just wondering how things are going- well, I hope!

 

[Sushi]

@Sushi just wondering how things are going- well, I hope!

I was starting to get some help from the Cusack protocol but then I needed to take a break to see whether it was this protocol or another new thing I am trying that was helping…so the jury is still out

 

[xebex]

@Mick just found out some intersting information that might be helpful for you. Apparently some people have discovers that George’s aloe on Amazon is fake and causes people bad stomach cramps and diarreah!!. This could be what happened to you. If you want to try it again try buying it from vitamin shoppe.