Desperate need of help

[Rizz]

@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.

That’s okay, a little better now! Colon woke up. I tried MJ suppositories and I think it numbed the area so that’s why I couldn’t hold water. Still shitty but much better now! I appreciate your prayers!

 

[Rizz]

@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.

I do this from thyme to thyme. Feels pretty good but doesn’t help in terms of BMs. I tried LDI too (transdermal), didn’t notice any pro kinetic effect, but I remember waking up at 3AM laughing hysterically. Then started to react to it. Thanks for info

 

[Rizz]

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.

Good on you, that’s awesome that they help so much. I take 4 caps per meal, don’t notice much, maybe more? Thanks!

 

[Rizz]

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.

Haha it’s relevant. I was prescribed nystatin too. Glad it helps you, my one doc said it got rid of mostly all of their patients MCS

 

[StarChild56]

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!

Oh my goodness you have been through so much, I am so sorry I hope that you have a good visit with the new doctor. You will remain in my prayers.

 

[overtheedge]

I've been getting good results from supplements focused on calming the body down and reducing a relaxed state, specifically: L-Theanine 200-400mg/day, California Poppy Seed 500-1000mg/day, and Passionflower 2-6g/day. The results have been phenomenal, though, I haven't used them long term, but I have tested each individually after letting the fx from the med I tested before each die down so I'm sure they all have their own power to them. I don't know if you'll be able to stomach them but though maybe your gut could handle a liquid extract. The kind of passionflower I take is in a liquid extract form, one I made sure was alcohol free as many PWMEs, myself included, react strangely to alcohol, and just throwing it out there since you probly don't wannna waste time getting one that is an alcohol extract and having to get another one or something and I think most of the extracts I looked at contained alcohol. Another thing about liquid extracts is that a good number of them don’t have many doses per bottle, like the passionflower extract I bought only has 15 doses per bottle where as a bottle of capsules of them might have 50 doses and perhaps other liquid extracts would have that many as well, just a pitfall to avoid.



Have you tried sublingual supplements?



Another thing I have found to help has been adaptogens which, if you haven’t run across them thus far, are herbs that modulate the stress response and help the body deal with exertion in a healthier way, so, they may help get you out of a sympathetic state. Once again I haven’t used these for an extended amount of time as I’ve been testing a lot of things one by one lately so I don’t know quite the extent of their power or whether they are something that will continue to work long term but so far every adaptogen I’ve tested, each for one week at a time, has shown promising effects.


Here is some info from my notes on adaptogens taken from various sources:

do adaptogens in 5 days on 2 days off w/ every 4th week off (Note: this may be true of other herbs too)

Many people take adaptogens almost every day, while others will take them several times a day based on their needs (check with a professional for guidance about what’s right for you). Gaia does recommend that you take a day off from your adaptogens each week; if you’re using them for more than six weeks, to also take a full week off; and if you’re using them for six months, to take a full month off. (These little breaks are said to let the herbs really take effect in your system).

Rhodiola is used as a single dose for acute stress suggest that doses three times the dose used for long-term supplementation. No side effects of been reported for clinical trials, but at higher doses some individuals might experience greater irritability and insomnia(another source I found also listed rhodiola as potentially causing insomnia)

The suggested daily dose of standardized rhodiola extract is between 200 mg and 600 mg. The daily intake can be divided into 2 capsules or tablets. The first dose should be taken in the morning before breakfast and then later in the afternoon just before lunch.


Notes from adaptogen webinar by gdx: (https://gdx.net/clinicians/medical-...onse-womens-health-and-the-role-of-adaptogens)



If adaptogens stop working for you change the dose around, they can be relaxing or energizing based on dose. This is true for all adaptogens.

For CFS use the least stimulating adaptogens, known to be relaxing. Start with adaptogens that are relaxing like ashwaghanda. Also, for CFS try the really nutritive ones like maca. Start with the lowest dose at the lowest frequency. Rhodiola is safe to take along with SSRI’s and SNRI’s

Eleuthero is rec by her for CFS.

She says to be careful when using adaptogens in persons with hypertension.

Books on adaptogens. David Winston has a book on them. Adaptogens by Donald Yance is good as well. Also rec the botanical safety handbook.

Be very careful with kava kava and st johns wart. Kavakava can, in rare cases, can cause hepatic damage.





You mention going out and exercising daily, have you tried resting in bed all day, what happens if you don't exercise?


Could the constipation be a reaction to one of the medicines you're taking on an ongoing basis, if you're taking any? Perhaps a recent change of dosage or something?


About the chronic constipation, I've had something similar in the past, when I first developed CFS I had bloating, especially around big meals, and endless burping, as well, and, I don't know if you have been dealing with anything like this, but I also had severe chronic constipation at the time, years of having barely more than a movement a week, tried a lot of things but eventually came upon Betaine HCL and Digestive Enzymes which normalized my bowel movements within a few days, don't know which specifically is responsible. Betaine HCL is a strong acid meant to acidify the stomach, I only had to take one table with meals but some recommend more such as increasing the dose you take with meals till the dose induces burning and then reducing the dose to one less tablet than would cause the burning. Never take the stuff without food. If you don't notice any difference from taking Betaine HCL after a while it might be best to stop using it as your body may not need the acid and might be getting too much, again, the results were immediate for me, within days and definitely within less than a week I noticed a certain increase in bowel function.


My bowel function continued to improve over the course of several months after starting Betaine HCL and digestive enzymes until it was really working well and right around the time it started really functioning perfectly the CFS I had at the time went away, it might well have stayed away too if i hadn't immediately jumped into working long hours under very stressful conditions immediately after getting back to wellness.


Let me say that I suspect I may have damaged my gut with Betaine HCL right at the time my most recent CFS came on. I had been taking Betaine HCL and enzymes with each meal with no problem at that point and my BMs were all healthy looking, regular color/no undigested stuff, but I was desperate as I wanted to keep working my job but my energy levels were being whittled away lower and lower each week from energy expenditure/stress. I tried ramping up the dose of HCL tablets until I was taking around 10 with each meal, I never went beyond one per meal before this test and one was plenty. Many of the meals I ate while ramping up the dose of betaine HCL contained little protein which probably accentuated the problem as the acid acts on the protein, eventually I got a tingling all over my body that lasted several minutes right after one such meal and I had to quit work within the next week, although, my energy may have just been hitting rock bottom at that point from overwork, cant say for sure.


That was also the second time i developed severe consipation, right as this most recent CFS hit me four-five years ago. I started only having one movement every three days and all bowel movements since then have been light brown in color, tried the one capsule of betaine hcl and different brands of enzymes with meals again with no results, after some months i tried DGL which is a form of licorice, immediately my bowel movements increased to one per day. I took DGL tablets for around 9 months then stopped to see what would happen, turns out it permanently fixed the problem so I no longer need to take the DGL.


I should mention that I still take digestive enzymes, don't notice any overt effect from it but I see results on the stool test I take every now and then, the chymotrypsin levels were low but normalized as i increased the dosage of digestive enzymes from one to eventually two with each meal.

I think the constipation and the CFS or the state that allowed CFS came about as a result of stimulants I took as a child for hyperactivity, I wouldn't have movements on days where I took the drugs nor would I have an appetite during the day, I also had to deal with insomnia, paranoia, and fatigue on the days where the meds were used but being a kid I never put 2 and 2 together. Sympathetic dominant symptoms for sure though


My doctor has told me of one of her patients who many times the regular dose of betaine hcl with each meal for a while and eneded up destroying her esophageal sphincter and is in constant pain from it, further evidence high doses, if not needed by the body, can be dangerous.

All the best

 

[yurybx]

Taking betaine HCL with pepsin with meals has made all the difference in my digestion.

Tell me, please, in which form do you take betaine hydrochloride and pepsin? This is асіdin-рерsini, which consists of betaine hydrochloride and pepsin? Or are these two different drugs: separately betaine hydrochloride and separately pepsin in the form of powdered sugar? I was completely tortured by my lazy digestive tract. Maybe these medicines will help. By the way, the acidity of my stomach is slightly lowered.

 

[Mary]

Tell me, please, in which form do you take betaine hydrochloride and pepsin? This is асіdin-рерsini, which consists of betaine hydrochloride and pepsin? Or are these two different drugs: separately betaine hydrochloride and separately pepsin in the form of powdered sugar? I was completely tortured by my lazy digestive tract. Maybe these medicines will help. By the way, the acidity of my stomach is slightly lowered.

I've been taking this product that has both betaine HCL and pepsin, though you can buy them separately. I don't think pepsin has anything to do with powdered sugar though! It's an enzyme. There are several good products out there, including this one. Be sure to look at the strength on the label - the Now foods product is twice as strong as Swanson Vitamins.

I was told by my doctor to start with one capsule and increase the dose until I felt "acidy" and then back off by one. It may sound a little strange but that's how it felt, and it worked. Depending on the meal I generally take 2 to 3 before a meal - meals with protein and fat are the hardest to digest and require the most.

Another thing you can do is the baking soda burp test. Dissolve 1/4 to 1/2 teaspoon of baking soda in 8 ounces of water and drink on an empty stomach. If you don't burp within a few minutes, it can be an indication of low stomach acid. You need to do this on an empty stomach because baking soda neutralizes stomach acid.

Betaine HCL has made a huge difference in my digestion. As I said before, food would literally sit in my stomach for hours, I felt awful - it wasn't getting digested properly. I think low stomach is very common in ME/CFS. It also can contribute to or even cause SIBO because HCL helps keep "bad" bacteria in check.

 

[Richard7]

I have used the "Doctor's Best" and "Country Life" brands and I think Solaray. I just get the one that is cheapest. I have not found one that did not work.

Like Mary I started with one capsule and then increased my dose by one tablet per meal until I felt a burn and then decreased my dose. After some months I started to feel a burn at that lower dose and dropped my dose again.

I have done this a few times and am mostly on 4 tablets a meal.

 

[Wayne]

Taking betaine HCL with pepsin with meals has made all the difference in my digestion.

Hi @Rizz,

I hope you're doing better these days. Just to mention, I regularly put magnesium oil (magnesium chloride) on my stomach area. It apparently is absorbed quite readily into the stomach, and easily converted into HCL. Just a possibility that might work for your sensitive system.

It’s all about getting out of fight or flight for me

Have you ever tried or considered energetic exercises? I do the Cortices technique daily, and find it to be very helpful, even for relieving depressive and anxiety states. Below are links to a couple of short videos which explains more about it. The woman in the second video specifically mentions fibromyalgia and CFS. -- RIzz, I really admire your spirit, and relative resilience while going through some really challenging times. -- I hope things are turning for you in a positive direction!
........................................................................................................

The Cortices Technique with Dr. John Veltheim

Balance Your Brain with BodyTalk: The Cortices Technique

Donna Eden also has some excellent tips in ths video:

Donna Eden 5 Min Energy Routine
...................................................................................

P.S. -- If you're open to a spiritual technique that might help--which I use daily--here's a link to a 3-minute video on singing the HU SONG. -- It's somewhat similar to singing the sound of OM, but has a higher frequency--and from my experience, is more deeply calming. I've also heard it's the spiritual sound from which hallelujah ( HalleUljah ) originated.

 

[BlahBlahBlah]

How are you doing now? Who are you under? Have you had eds ruled out as everyone I know with your issues on tpn also have eds. I don’t know if your in the uk but they can test to see if your colon has stopped working, some people change to an ilostomy when their colon completely fails and although hard at first a lot of people find an improvement in their symptoms, some even start being able to absorb again. Obviously it’s a big step. If you are in the uk there is a really supportive tpn group I can add people to on fb