How to make a treatment plan

[Jo-Jo]

I am so grateful for this community. I know the support has kept me going. I’m very amazed how well you all can get through so much information and continue to unravel this mysterious condition. I’m having difficulty sorting through it. I’m stuck. I’m not sure what to do next. Quick summary, I’ve been doing this since 2011. I had successful neurosurgery except I have nerve damage that requires I take pain medication. Yuk. Then 5 very busy years later I had my gallbladder removed, shortly after I got a mild flu and within a month closed my business. I continuously work on my PTSD. I’m pretty sure that pain is a constant trigger for it so I do a lot for that issue. I’ve pretty much stabilized my hormones and I’m working on my stomach which is much better. I have gastroparesis and no gallbladder so diet is challenging but I think it’s pretty good. Sleep is better except having to get up every two hours to pee. I’m doing lots of probiotics for constipation which is fairly effective.Here’s my question. What now? I have had a few magical days when first doing some methylation treatment and then a lot of pain, detoxing? I feel like it’s a clue but is the detoxing always going to be part of it? Is that the case? So two questions, is detoxing what you do after stabilizing your symptoms and before or while doing a methylation protocol and if so how can you tell what is a bad reaction and what is detoxing which always feels yukky. I’ve noticed that when I take a methyl multi and maybe NAC I have a lot of pain. Any suggestions would be helpful.

 

[jaminhealth]

Since you don't have a G.B. are you taking support .. I have mine but have found ox bile or bile acid factors by Jarrow really helps my bowels. If you don't know about ox bile etc do a search and digest what it does and especially with no G,B,

 

[Jo-Jo]

Yes the ox bile extract and pancreatic extract is vital. I also do digestive enzymes, aloe vera, the good licorice and sometimes regalan.Im also taking these thermal salts which has been a life saver after a sphincter of Oddi attack. Weirdest name I’ve ever heard but my doc gets these attacks occasionally so it’s a real thing. I’m watching my carbs and take green powder protein smoothies. My energy is a little better, then I do too much and I guess I crash a little, more pain and fatigue the next day. Is this a correct statement, that if you can detox, get the methylation going that the body will start getting its act together and right itself. If you have a virus your immune system will be able to take care of it?

 

[Ruth Kelly]

I don't have an answer for the question you pose here but I can say my own reaction to the question after a long time with CFS is that it depends on the person, with most of these issues, including the seemingly unrelated-to-cfs ones (i do wonder if failure of gallbladder is tied in). For instance, I can't use ox bile extract. It wrecks me. But I do use enzymes. They seem to reduce my own SOD symptoms if I use the Urban Moonshine digestive bitters several times a day for a couple of weeks and then pull back when the symptoms improve.

I wanted to respond here just to mention that I was glad to see someone else mention the sphincter of Oddi struggle. I, too, had my gallbladder out and have had upper right quadrant pain and all the SOD attack symptoms for a very long time. All tests normal. All scans normal. Every time I'm checked. Your mentioning it led me down a path that looks really helpful as I'm finding that the digestive bitters are a good patch job but I feel there has to be more I can do. Btw, my experience with getting my body back in some semblance of functionality has centered in supporting my mitochondria via food, rest, supplements and taking anti-virals (I use herbs), with loads of vitamin c (and an arsenal of many other supplements).

Strength to you on your quest...

 

[Jo-Jo]

@Ruth Kelly All my tests are always normal too. The natural thermal salts i take are from Biotherapy-clinic.com. They also have some great information there too. This is a good one.
Biotherapy Natural Treatment for Sphincter of Oddi Dysfunction
By Peter Melamed PhD
Sorry I couldn’t reduce the font. I have just started to read it but I really see how the pancreas is important to address. I have had to really reduce my carbs, all of them. I really feel the difference when I slip. The worst thing is giving up dark chocolate. I bought the salts from Amazon. One of the treatment suggestions I’ve gotten is to take care of my gut first, especially leaky gut. Have you checked that out. It’s a big deal for me and I’m much better since dealing with that. Sara Myhill is the model i look to a lot. I just wish i could figure out the methylation protocol.

Could I ask which anti viral supplements you’re taking? Does the methylation you’re doing cause detox problems? I did 23 and me and my detox ability is compromised but I’m guessing I can still modify and get some of the yuk out of me.

 

[Ruth Kelly]

@Jo-Jo Funny! I had forgotten (but you reminded me with this thread) that I have the very same natural thermal salts and I had used them only a couple of times but they've expired now...if that's possible(?!). I also have alginate plus for the purpose of detox (can't report on it as I had good intentions but never used it...was a little afraid of it!). My life hasn't made room for me to really focus on it yet, though. Thanks for the book reference. I'll definitely look into it. I had formerly reduced carbs and generally do keep an eye on not over-doing them but the whole CFS gut scenario became such a train wreck for me that I had to consume some carbs to offset my body's reaction to fiber/veggies etc. Paleo-style eating had been my go-to but it began to disagree with my gut (I eat non-gmo, organic, free-range, etc.). I feel that it's very difficult to know where post gallbladder removal impacts leave off and innate CFS gut issues pick up sometimes. And it can be maddening. So I end up throwing a lot of stuff at the wall, so to speak, and whatever sticks sticks. I just never really know why or what!

I wish I could tell you that I have the methylation process worked out. I do not. I've been wary of disrupting my body any more than the ongoing stress in my life already has done. BUT. I do take tons of SAM-e (part of methylation) and I take glycine. And I've taken SAM-e for decades. I can tell when I'm not taking it. I'm in more pain, upper right quadrant pain is more severe (interesting, isn't it?) and I just generally have less spark ("spark" as defined by what CFS already suppresses) and I'm less upbeat mentally, less focused. I've also focused on increasing glutathione but I know that has only been a half-way effort (if even) and can't say that the glutathione attempts have been really very helpful. Also, I take NAC regularly. I consume 3 grams of MSM daily as well (not sure how much that helps but I feel it impacts my overall energy). BUT. I've ordered a lot of supplements towards the work of re-introducing the methylation protocol. I can keep you posted as I go, if interested.

Leaky gut etc. Gut issues are just a matter of course with CFS. I take it for granted that I'll either be one extreme or the other with gut health. But something very reliable for me when IBS-D is prevalent is psyllium seed powder (and probiotics, but honestly it's mainly the psyllium seed powder that helps me, oh and sauerkraut). I do NOT mean psyllium seed husk powder. The husk powder tears at the gut and can cause bleeding. The seed powder is almost impossible to find except via Starwest Botanicals and I purchase it via Amazon and put it in pomegranate juice and in my smoothies as needed. When I began using that (I also used bentonite clay, other clays AND of all things, food grade diatomaceous earth) especially, my gut became very happy and I have since been able to reduce more carbs as a result.

Anti-virals I use: Seagate (best product) Olive Leaf Extract along with Cordyceps (for my gut, for my heart - it was the only thing that stopped non-stop PVCs, and for overall energy and inflammation relief) as well as Oil of Oregano (caution on this one, I hold a big gulp of water in my mouth and put a few drops in and swish it around as it can burn; it could also just be put in a glass of water but I've not done that since you can't control how it enters your mouth and it can hurt).

Anything that causes detox just immediately throws the red flags up in my mind so I go very cautiously, whether there's an inherent underlying risk with detox or not. Gentle and gradual is my game. Eating cleanly helps with having a body that is ready to handle any level of detox. But I imagine you know this very well.

I fear I've tossed more than you asked for out here! Hope some of this is useful.

 

[Jo-Jo]

@Ruth Kelly Thanks for all the info. This is all very helpful. Forgot olive leaf. So gross but I know it’s really good stuff. And I forgot to mention I also take a prescription I got for Oddi attacks that really saves me, Baclofen for spasms. I try to stay away from prescriptions but boy that Oddi can hurt. Gut stuff is so key, the 2nd brain and all. No gallbladder and gastroparesis complicates my diet a lot. Glutamine has really helped my leaky gut nausea. I seem to have a “gut” feeling,pun intended, about what I can eat and it’s pretty accurate but it changes too. I just don’t like following the no sugar imperative. I have a sweet tooth. Yogurt with coconut sugar is my splurge.
The salts also gently detox and i think it’s helpful with absorption of nutrients by creating a ph balance. The title i sent you is an article and there’s others at the Biotherapy site that explains how the salts help and really interesting stuff on the pancreas. I take it 4x a day. Come to think of it I am probably doing all the detoxing I can manage just doing the salts.its very gentle but anything else is too much. Hmm just figured that out. I get so impatient. I’ve had maybe 4 good days when starting a methylation supplement and then I’m worse probably because I up the dose trying to find that good feeling again. Genetics say I don’t detox well so I need to keep getting rid of the crud but slowly.Glad to know about the good psyllium. If you can I’d appreciate updates on how your doing. And I’m going to take all this great info and patiently try what feels right. Thanks so much.

 

[Ruth Kelly]

Glad it's helpful, @Jo-Jo. I'll look into Baclofen 'though I generally try to avoid prescriptions, too. I could use some relief.
Do you take the salts on an empty stomach, btw? Curious to know how strict you are with the protocol.
I'd forgotten, but I also try to take Alpha GPC along with other supplements since it helps with choline production. So, there's that.
I'm working on creating a directory for myself because I wind up learning and then forgetting and then disconnecting from why I'm taking things because life is that crazy.
And yes, I'd forgotten, I take glutamine from time to time as well! Very key. It's helpful for the muscles as well.
Thank you, Jo-Jo! I really appreciate the feedback and reminders here. I'll be in touch as I move along the path there. Strength to you!

 

[Jo-Jo]

Thanks, support is powerful medicine. Back at you. So I’m actually more disciplined about how i take the salts than anything else.That Oddi pain left it’s impression on me. I take it about a half hour before a meal, 4x a day. It’s been almost two months since my first Oddi pain experience sent me to the ER for the first time. I still have to take the baclofen a few times a week. The Cat scan did show dialation of the duct. It feels like it’s taking awhile for it to settle down. I notice it when I don’t drink the salts regularly. There’s so much I try to take on an empty stomach, like glutamine, probiotics, immune support. I’m surprised I ever eat lol.

And thank you for the idea of making a chart of some kind. I’m trying to hold way too much info in my head about my supplements like what are cofactors or what you should take or not take with this supplement, and what does it do? Now I’m remembering that something I was or am talking lowers copper and potassium and I just read about something you should take with COQ10. Of course i don’t remember what it was. We should have honorary degrees in something with all the research we do.

I think we all deserve a lot of credit for how much we work towards being the best we can be. So if you haven’t heard it enough, I applaud you Ruth. And I’m actually Dianna. JoJo is that sweet puppy in the picture I use. The more I aspire to be like JoJo the better I feel.

 

[Ruth Kelly]

I'll remember to take the salts on an empty stomach since you've clarified that. Thanks for the goldmine of info and the support. And I'm applauding you right back, Dianna. (Jo-Jo looks like a sweetie!)