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Desperate need of help

Discussion in 'General ME/CFS Discussion' started by Rizz, Jul 18, 2018.

  1. Rizz

    Rizz

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    Hi all,

    Haven’t been on here much lately. It’s been a rollercoaster of a 6-7 months. Right now I’m in need of some help.

    My main issue is supplement intolerance/MCAS. I have a Hickman port (reliant on intravenous nutrition), and I eat one small meal a day. I also have gastroparesis, and out of the blue one day last month, it worsened pretty substantially. On top of this, I have Chronic Lyme + low CD57 count, mycoplasma, Parvovirus B19, suspected dysbiosis, Coxsackie, Babesia, etc. I have chronic heartburn, and over the past 6 months have been slowly unable to drink water, as it worsens things. I have been receiving antigen shots so that I can tolerate supplements again, and I have been using them since March. Still unable. Likely to start LDI soon. Also, I have had about 20 sessions of HBOT.

    Throughout this time, colon hydrotherapy has literally saved my life. But after my last few visits, I’ve noticed that I’m unable to retain a lot of water before getting an urge to release. I fear that my colon has become lazy, and that even this may not help. My heartburn has gotten worse, and I know it is because of this. I still have stool in my bowel. It’s getting near impossible to stay on this earth. DNRS has been a godsend, and I have gotten great results from it, but I had a stressful setback in March, and here I am. Prior to, I had more energy, my vision was clear, brain fog lifted, increased libido, and best of all, I started to tolerate a few supplements. I know this is the way. I know it. I’ve seen it. It’s just the matter of getting there. And when I’m uncomfortable 24/7 it makes it hard to get there. And getting there may just save my life.

    I really don’t know what to do at this point. I know my fear of supplements contributes to my reactions. The other day I literally emptied a capsule of magnesium citrate, swallowed the empty capsule, and had symptoms (shortness of breath/overstimulation for 2-3 days straight without relent. Its really messed up.

    I guess my question to anyone that is listening is, does it sound like my colon is just dead now? There seems to be literally no persistalsis anywhere. Food sits in my stomach for 20+ hours. Maybe some kegels might help? Any advice is appreciated. I don’t know what happens next honestly. Hard to retrain your brain under these circumstances. Lately I’ve been so stressed/overthinking things that I’m noticing a huge increase in sensory sensitivity (mostly sound). Not gonna lie, I’m really scared right now... Just getting through the day is nightmarishly hard. Going on reglan through my IV in a couple weeks, as well as some form of SSRI. That’s really all I think there is out there for me right now. I also have an appt for neurofeedback next week.

    Again, any response is appreciated. FYI I just had an endoscopy and the only substantial finding was an erosion on my duodenum. I have heartburn/LPR everyday of my life, yet no damage. This world almost goes out of its way to not make any sense... The only thing keeping me here is hope in Christ, and fear of hell. Seems like divine intervention is really the only thing to help at this point. That and maybe a surgery or two.

    Prayers welcomed. Sorry if this thread is in the wrong place, and let me know where to post if it is. I’m just really out of sorts.

    Thanks guys.
     
  2. Rizz

    Rizz

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    To add, If I could literally take three supplements, I would be a totally different human being. Just some d limonene, hcl and magnesium citrate. I really don’t think it’s too much to ask. My GI tract WAKES UP on these bad boys. But I have to be in a parasympathetic state to take them it seems. And to have that, I need to be at least a little comfortable in my body.

    What the absolute fuck is going on with the incessant catch 22’s. It’s amazingly difficult to find even a small outlet, but it is possible!!!
     
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  3. outdamnspot

    outdamnspot Senior Member

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    Have you ever tried coffee enemas?
     
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  4. Richard7

    Richard7 Senior Member

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    Hi @Rizz I really do not know the answer, but I though of a couple of things reading your post.

    1) I know that in one of the videos I saw a couple of years ago about MCAS some doctor talked about geting patients to practice gargling and/or singing to retrain peristalsis. I do not know if this would work with pwme/cfs.

    2) I wonder about SCFAs. I understand that the gut needs butyrate to feed itself. Indeed I understand there is a general problem with the gut needing to feed itself rather then been fed by the rest of the body.

    3) with water have you considered trying some kind of oral rehydration solution. The standard WHO oral rehydration solution is 20g glucose + 3.5g salt + 1.5g potassium chloride + 2.5g bicarbonate of soda (NaHCO3) if the glucose is an issue you can try making it with about 12-13g of an amino acid mix instead. (The right amount would depend on the amino acids used but one does not really have to be that precise.)

    the trick with these solutions is that you have several transporters in your small intestine that take up a sodium ion with either a molecule of glucose or an amino acid. These molecules and ions all exert an osmotic pressure that pulls the water across the gut wall and into your body.

    4) with sensitivity to sound the only solutions that I have found to work are probably gut based. I had a significant reduction in anxiety with flaxseed oil and tumeric and NAG. (@Hip's mix). I have also found probiotics seem to help. particularly yakult (made up as a home made soy or dairy ferment in large doses, but the research used sachets of yakult (l casei shirota) and dextrose) and a mix sold as "mood" - a combination of two strains of l helveticus and b. longum.

    I have recently had a few days of hyperacusis following a day of diarrhoea (I tried reintroducing oats) and in me at least the correlation with dysbiosis seems pretty strong.

    I hope this helps.
     
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  5. Rizz

    Rizz

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    No, that’s actually a really good idea. Stimulates peristalsis right? Just heard of some people that had a bad reaction/died. But at this point I’ll do it, thanks.

    Saw your recent post. You are a trooper if I’ve ever seen one. Keep chugging man
     
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  6. Rizz

    Rizz

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    Thanks for the ideas. I will definitely try gargling. Vagus nerve needs to wake up. I’m doing suppositories of melatonin 1.5mg (for heartburn) and a probiotic suppository (Gutpro 25 billion cfu) with 1/32 tsp of slippery elm as prebiotic. Just a theory, but might work. You mentioned butyrate, I wonder if I can make a ghee suppository.

    Dysbiosis is the center of it all. Damn bugs. Glad you found ease w/ sounds with that mix. I have glutathione suppositories and activated vitamin b cream that might help? I’m very low in b6, despite it being in my TPN formula. P5P is in the cream, might help persistalsis and some neuro-stuff maybe... I did a stool test awhile back and my probiotic count was 0.02x compared to sample average population. Not good.

    Honestly the very best thing for me is having a purpose in the world, and being around others. Symptoms are much less then.

    Thanks for info bud
     
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  7. Rlman

    Rlman Senior Member

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    for this lady, mold was behind her mcad and chronic lyme www.anaharriswrites.com. just sharing in case could be useful. That being said, brain retraining like dnrs has apparently helped some with mold too.
     
    Last edited: Jul 18, 2018
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  8. Forçe e Honra

    Forçe e Honra Senior Member

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    I am so very sorry to hear of all that you are going through and I will definitely keep you in my prayers :)

    I can't offer much, but I take LDN and that - along with antibiotics for SIBO - cured me of the constipation I'd have for years. My specialist told me LDN helps with whatever the term is for the wavelike movements your intestines need to make to move stool through your intestines. LDN is also very cheap, it calms the glia? (Sorry I am forgetting the term) and I believe he told me helps inflammation as well. It is really cheap, my copay is like $15 and the pills come in 50 mg, I dissolve (well my son does) it in distilled water and only need 4.5 mg a night so it lasts a long time.

    I hope you get some much needed relief, soon.
     
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  9. Forçe e Honra

    Forçe e Honra Senior Member

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    Also, I have MCAS and have to take quite a bit of medication which has helped...and I heard one of them, cromolyn sodium (liquid) helps the gut. That and a compounded med called Ketotifen seems to be very helpful. But that is along with a host of other MCAS meds and since you have port and only eat one small meal a day I realize my suggestions may be completely useless.
     
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  10. Richard7

    Richard7 Senior Member

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    I don't know that ghee would be of much use, it would contain very little butyrate and could be a problem in the descending colon.

    Things removed from the descending and transverse colon go to the body via the liver, things absorbed in the ascending do not. This is why suppositories get the same effect with lower doses.

    The SCFAs produced by the fermentation of fats and proteins in the colon that Chris Armstrong and McFabe are concerned about in pwme/cfs and people with autism are I gather being produced by bacteria in the descending colon.

    For butyrate you could look at the supplements designed for sportspeople. I don't know a lot about them but https://peterattiamd.com/ has described taking some.
     
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  11. outdamnspot

    outdamnspot Senior Member

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    Haha, I don't know if it was intentional but you made me laugh .. I like how you casually went from 'bad reaction' to 'died'. Yes, I would certainly classify death as a bad, unintentional reaction. I've been doing them almost daily for 2 years and haven't had any issues; it should be fine as long as you manage hydration and electrolyte levels. And I presume they stimulate peristalsis.

    Thanks for the props, though honestly question why I'm still trying lately ..
     
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  12. Mary

    Mary Moderator

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    @Rizz - I am so sorry you are having such a rough time! When you said food sits in your stomach for 20+ hours, it sounds exactly like how I felt several years ago when I first discovered I was low in stomach acid. Taking betaine HCL with pepsin with meals has made all the difference in my digestion.

    Then you went on to say how much your GI tract likes hcl but you need to be in a parasympathetic state. You might try doing this position - it really is very calming. It can take several days to notice an effect.

    Also, low stomach acid can cause heartburn.

    I hope you get some relief soon ---
     
  13. RHazra

    RHazra

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    @Rizz i don’t have much to offer in terms of solutions, but will certainly keep you in my prayers. So sorry you are going thru such a rough time.
     
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  14. Forçe e Honra

    Forçe e Honra Senior Member

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    @Rizz - this is a You Tube video about intestinal massage for constipation and to get the colon/intestines to move themselves. It is pretty simple and you can do it yourself. I tried it before (but only a couple of times I think I should have done it daily, 2x daily) I got the relief from SIBO abx tx and LDN which completely resolved my constipation. Immediately, actually the LDN improved it greatly even before I got the SIBO tx but the abx for SIBO got me completely cured in that respect.

    It is only a couple of minutes long. I don't know if it will be of help but thought I'd throw it out there. I hope you get relief and feel better soon.

     
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  15. AnnaDove

    AnnaDove

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    Hi @ Rizz, In 2008 I started becoming weak and made the rounds of the doctors including gastro doctors to no avail. Like you, food would sit in my stomach with pain until I put more food in to push that through. By process of elimination I diagnosed my own self with pancreatic insufficiency then went on a search for a doctor who would know how to treat it.

    I found a Gastro doctor in Atlanta who specialized in the pancreas. He hopped right on it from the first day and sent me home with the strongest samples of enzymes. He of course followed up with all tests to confirm the diagnosis of pancreatic insufficiency.

    Today I take about 25-30 enzyme caps/day. Also, like Mary I keep my HCL up high to prevent acid reflux. God bless you and keep you strong until you find the answers.
     
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  16. Richard7

    Richard7 Senior Member

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    Hi @AnnaDove I also use betaine hcl and enzymes. I just have never been in as severe a position as Rizz seems to be.

    But just for the record at the moment I am on betaine HCL + pepsin, creon which is a pancrease extract (that is actually pretty expensive if you have to pay full price - I don't) and a mixture of plant ezymes that I use to try to simulate the enzymes that are tethered to a healthy person's small intestine.

    For the plant enzymes I started with Klaire Labs sibb zymes which are targeted exactly at this problem but are hard to get in Australia, I have recently switched to using a mixture of biocore complete and biocore gluten digest which can be bought under either the NOW or Swanson brands.

    I also was taking ox bile for quite while, but have since found that if I eat liver every day or two I produce my own bile. And I prefer to do this because it allows me to get rid of some toxins and means that some part of my body is working (yay).

    For most of the last 15yrs I have had undigested food in my stools but have found that if I do the above and take a low dose of Nystatin (2 or 3x 500units a day) I have well digested stools.

    I have no idea what the nystatin is doing at this point, I have been taking it for over a year and do not think it is really wiping out fungi at this point, but for some reason whenever I stop I get odd movements that contain lots of chunks of undigested food, I also start to feel like I have sunburn in my gut - I assume that this is severe inflammation.

    When it comes to actual movements, peristalsis etc, I have found that putting my feet up after eating, choline supplementation and coffee helped. In my case the coffee has just being oral. (Is this the only place in the world where one has to specify that?). I did read Julie Rehmeyer's book in which I think I remember her saying that the only documented adverse side effect to coffee enemas that she came across was someone who used hot coffee. Don't use hot coffee.

    But really my issues seem so much milder that @Rizz's so I do not know if any of it is relevant.
     
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  17. Rizz

    Rizz

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    Thanks for the info! I actually have cromolyn in a capsule form along with a nebulizer. I’ve tried nebulizing a pinch of it, still causes reaction. I know it’s from a limbic system impairment from severe stress. One time I took a capsule of magnesium citrate and emptied EVERYTHING out from it and still had a reaction that lasted 8 hours. It’s an innate fear that I have corrected before with DNRS. I had remarkable results and then I made a trip to Buffalo (6 hr ride from me) alone, carrying a bunch of luggage, and my doctor literally abused me for two days straight. Screamed at me for hours, picked on me for everything, caused a relapse... In one day, an evil woman singlehandedly reversed months and months of work and subsequent progress. All I know is that it’s possible to reach that point again. I know SIBO is a big issue for me, that’s when my MCAS got bad, after abx. I’m seeing Dr Ty Vincent in August for MCAS + chronic Lyme, I have high hopes!
     
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  18. Rizz

    Rizz

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    Thanks
     
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  19. Rizz

    Rizz

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    Haha when I wrote that I was near suicidal so the humor was lost to me, but that shits hilarious.

    Never stop trying my friend. If there is a way in, there is a way out (unless there isnt) :)

    Just kidding there always is ;)
     
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  20. Rizz

    Rizz

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    Ooh I will try doing that. Yeah I know I literally have no stomach acid. It’s a real bitch because my problems are so fixable, it doesn’t take much. It’s all about getting out of fight or flight for me, I’ll try that position! I smoked the good kush one day and I ran 2-3 miles in a couple hours, compared to 1 mile total walking distance each day, normalized my symptoms too. Just can’t smoke bc of reflux. Tried edible but reacted and gastroparesis made it so I got high 20 hours later, while driving. Fun times man. Also thank you
     
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