You probably have an autoimmune disease...

[Learner1]

So you have at least one autoantibody for which Rituximab is scientifically known to be helpful for, right?

Rituximab kills off B cells which produce antibodies. Though it's FDA approved for 4 specific autoimmune conditions, it's actually non-specific to a particular kind of antibody.

Understand, so you have had a dramatic subclass deficit and this was the reason to get it approved?

I was deficient in 2 subclasses and total IgG. Part of it may be that I had 7 active infections which were using up what I was producing.

That's complex for someone with brain fog, but it sounds you need to be rich again to get covered.
Could you tell me how much percent of costs you would save in the end with such an insurance, in case you know it?

That's how private or employer based insurance works in the US. There are people below a certain income threshold covered by government provided Medicaid who get it for free.

People die here in the US because they can't afford medical care - it's a very cruel system. Everyone involved in the medical system is making huge profits while driving costs up for patients and insurers. One day it will change.

 

[Violeta]

Yes, that seems to be the case.

TNF-a could be more important than IFN-y. Some of the covid supplements mentioned in the clinical trials are: quercetin, zinc, melatonin, berberine, and black cumin seed oil. These supplements have in common the inhibition of TNF-a, while increasing IFN-y. Perhaps meaning the deleterious effect of increasing IFN-y is outweighed by the benefit of decreasing TNF-a.

In contrast, selenium has a favorable action on both TNF-a and IFN-y. There are posts on PR about using selenium for ME/CFS. These studies mention selenium's positive effect on both TNF-a and IFN-y.

"Selenium treatment significantly inhibits tumor necrosis factor-α-induced cell death and tau hyperphosphorylation in neuroblastoma cells."
https://pubmed.ncbi.nlm.nih.gov/25109896/

"Selenium prevents interferon-gamma induced activation of TRPM2 channel and inhibits inflammation, mitochondrial oxidative stress, and apoptosis in microglia"
https://link.springer.com/article/10.1007/s11011-020-00624-0

There is a lot of information on these cytokines at:

https://selfhack.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/

Excellent information in your post. Thank you

 

[hapl808]

That's complex for someone with brain fog, but it sounds you need to be rich again to get covered.

Even with brain fog it sounds like you understood it well.

 

[pattismith]

I just made bad reactions with Pantoprazole treatment and Minocycline treatment (myalgias with the first and arthralgia with the second).

Both drugs has been associated with increased auto-immunity, so be aware drugs may be harmfull to us...

Here a recent article about Proton pump inhibitors (like pantoprazole, omeprazole...)

Frontiers | Proton Pump Inhibitors Increase the Risk of Autoimmune Diseases: A Nationwide Cohort Study (frontiersin.org)

....

 

[sometexan84]

I just made bad reactions with Pantoprazole treatment and Minocycline treatment (myalgias with the first and arthralgia with the second).

Both drugs has been associated with increased auto-immunity, so be aware drugs may be harmfull to us...

Here a recent article about Proton pump inhibitors (like pantoprazole, omeprazole...)

Frontiers | Proton Pump Inhibitors Increase the Risk of Autoimmune Diseases: A Nationwide Cohort Study (frontiersin.org)

....

Just my opinion... I've been against proton pump inhibitors (PPI) for a long time, as I see it as detrimental in the majority of ME/CFS/LC cases.

For example, seems like many w/ acid reflux get prescribed PPIs. And in our case, I think this is actually making things worse, as instead of too much stomach acid, we tend to have too little stomach acid. Problem is, we still get acid reflux from this.

So we get PPIs and shit gets worse. Anyway, to keep this short.... my belief is that PPIs can decrease our already low stomach acid, to a point where it makes gut dysbiosis and nutrient absorption worse. Way worse... increasing autoimmunity

 

[CSMLSM]

Proton pump inhibitors

Acid-Reflux Drugs Tied to Lower Levels of Vitamin B-12 – WebMD

Just my opinion... I've been against proton pump inhibitors (PPI) for a long time, as I see it as detrimental in the majority of ME/CFS/LC cases.

For example, seems like many w/ acid reflux get prescribed PPIs. And in our case, I think this is actually making things worse, as instead of too much stomach acid, we tend to have too little stomach acid. Problem is, we still get acid reflux from this.

So we get PPIs and shit gets worse. Anyway, to keep this short.... my belief is that PPIs can decrease our already low stomach acid, to a point where it makes gut dysbiosis and nutrient absorption worse. Way worse... increasing autoimmunity

I agree it causes reduced B12 absorption as an example.

Acid reflux is more likely from the dysregulated gastrointestinal tract via a dysfunctional HPA axis which is a prominent feature of the ME/CFS root cause along with body/brain/nervous system inflammation, immune dysregulation made worse by the dysfunctional HPA axis.

The immune dysregualtion in turn causes more HPA axis dysfunction as the inflammation in the brain then affects the PVN of the hypothalamus which is the start point of any external and internal stressors that go through the HPA axis.

A vicious cycle.

 

[Jadzhia]

For example, seems like many w/ acid reflux get prescribed PPIs. And in our case, I think this is actually making things worse, as instead of too much stomach acid, we tend to have too little stomach acid. Problem is, we still get acid reflux from this.

So we get PPIs and shit gets worse. Anyway, to keep this short.... my belief is that PPIs can decrease our already low stomach acid, to a point where it makes gut dysbiosis and nutrient absorption worse. Way worse... increasing autoimmunity

Yes, completely agree. Low stomach acid is far more of a problem. PPIs cause dependence and when you try to get off them you get rebound symptoms. Nasty stuff, and prescribed at the drop of a hat!

 

[GreenMachineX]

Yes, completely agree. Low stomach acid is far more of a problem. PPIs cause dependence and when you try to get off them you get rebound symptoms. Nasty stuff, and prescribed at the drop of a hat!

So then what's the answer for reflux then?

 

[Violeta]

Perhaps even though one has low hydrochloric acid, after the food leaves the stomach, hydrochloric acid release is not discontinued.

Perhaps this has something to do with somatostatin.

somatostatin

However, when the stomach is emptied, the acidic environment need not be maintained and a hormone called somatostatin stops the release of hydrochloric acid.


Also, secretin

Which hormone stops the secretion of gastric acid?


The hormone secretin inhibits the secretion of gastric acid in the stomach. It is a peptide hormone secreted by the S-cells of the duodenum. It stimulates the secretion of water and bicarbonates from the pancreas.

And this is interesting:

Neural Control of Gastrin Secretion
During the cephalic and oropharyngeal phases of a meal, gastrin release is directly stimulated by acetylcholine (ACh) released from vagal fibers via muscarinic receptors. ACh released from other vagal fibers also inhibits the release of somatostatin from antral D cells, which indirectly enhances gastrin secretion. In addition to ACh, gastrin-releasing peptide (GRP) is also secreted from postganglionic vagal nerve fibers and directly stimulates gastrin release via GRP receptors on G cells.

 

[Jadzhia]

So then what's the answer for reflux then?

Well, for me it's been an unusual and possibly very individual solution. I found that taking sodium molybdate was the key to banishing reflux. I no longer need to take Betaine HCl (I had low stomach acid due to hypothyroidism) and no longer have reflux, unless I run out of molybdenum!

 

[Treeman]

So then what's the answer for reflux then?

I kept a meal diary and cut out foods that appeared to cause flux. I no longer have acid reflux.

 

[hapl808]

I've been unable to deal with reflux no matter how careful my diet. Eventually after doing a very consistent and restricted diet and symptom journal, I realized my own reflux is only connected to mental or physical exertion. Too much time on the phone will lead to reflux. No time on the phone means no reflux.

Waiting for my molybdenum. I've tried slippery elm, DGL, marshmallow, d-limonene, mastic gum, xylitol, lactoferrin, pepcid, pepto-bismol, glutamine, fenugreek, allicin, betaine HCL, kefir, probiotics, and so forth.

 

[sometexan84]

So then what's the answer for reflux then?

Myself and others have temporarily benefited from apple cider vinegar, and few other things that help promote stomach acid. (Note: it's awful, super gross. but has helped multiple people from this forum)

The permanent fix would be neutralizing the root cause. For me, I believe it's Enterovirus affecting G-cell Gastrin secretion and Parietal cell HCl secretion. So I'm working on fighting that infection.

Here's the notes I have on this if anyone's interested....

• Production of Gastric/Stomach Acid
  • Gastrin is a hormone that is produced by 'G' cells in the lining of the stomach and upper small intestine (pyloric antrum or “gastric antrum” or pylorus). During a meal, gastrin stimulates the stomach to release gastric acid
• Parietal cells (also known as oxyntic cells) are epithelial cells in the stomach that secrete hydrochloric acid (HCl). Gastrin is what stimulates this.
• Enterovirus, Stomach Acid Disruption
  • Enterovirus infection in ME/CFS might lead to the low stomach acid …
    • Persistent enterovirus in ME/CFS has been found in the pylorus (gastric antrum), where Gastrin is produced by G-cells… EV could cause a disruption here
    • And here’s the other Dr. Chia study where 135/165 (82%) biopsies stained positive for VP1 within parietal cells in ME/CFS patients.
    • Since persistent Enterovirus is found in and around G-cells and parietal cells (epithelial cells) that are responsible for creating stomach acid, it’s likely that EV can lead to low stomach acid

Other notes I have on boosting stomach acid....

• Boost Stomach Acid (aside from zinc and probiotics)
  • Ginger or ginger tea
  • Apple Cider Vinegar – dilute in water, and drink before meal
  • Fermented Vegetables - pickles, veggies, kimchi, sauerkraut,
  • REDUCE carbs and sugar, and processed foods
  • Fiber foods
  • Iron and calcium
  • Natural digestive enzymes
  • zinc-rich foods – beans, beef and pork
  • B12

Throwing these notes on Zinc as well because, though I never did this for low stomach acid (aka hypochlorhydria), I did use Zinc + Vit A recently when my alopecia started up again (hair falling out). And since then, my hair has not only stopped falling out, but it's super strong, hard to pull out if I try.

• Zinc deficiency can contribute to hypochlorhydria
  • Zinc deficiency may present as alopecia, skin rashes, increases susceptibility to infections, can cause change in smell and taste, diarrhea
  • Zinc is an antioxidant, and promotes immune cell function, can improve intestinal permeability
  • May increase stomach acid
  • Very low zinc levels will allow chronic infection by intracellular organisms like mycoplasma, Rickettsia's, and chlamydia

Lastly, while it doesn't fit in perfectly w/ what I'm describing here... @Violeta could be on to something w/ her post above. I say this because....

1) secretin could in fact be dysregulated as enterovirus is often found in the duodenum, and

2) acetylcholine release can certainly be messed up for many of us, especially from EV infection in the submucosal and myenteric plexus where the enteric nervous system is.... EV def exists here and will infect the enteric neurons and glial cells here, effing w/ their ability to secrete acetylcholine (and now we're going full circle, cause this is where your neurotransmitter receptor auto-antibodies come from.... well, according to me, as this is my opinion only and NOT fact)

 

[lenora]

Good old fashioned beef broth (made with bones) is one of the standby solutions for ill health...and has been for centuries.

Yes apple cider vinegar with baking soda will help....don't brush teeth immediately afterwards as it isn't good for the enamel and really easing up on food for about 4-5 days is best for something like acid reflux. I then introduce one easy to digest food at a time....I then know if anything is causing the problem.

I've never found a direct answer, but the above has helped me in many ways. Veggies can slowly be added to the broth....but again, a little at a time. Jello, custards (if you can tolerate eggs and things like almond milk) will all add to help during this period of adjustment. But yes, the cider vinegar & baking soda is a good tonic. It's easy to make your own. If you can't force yourself to drink it all, then don't. Little by little you'll be able to...and I've been a fairly normal diet. Fortunately I like a lot of fresh fruits, veggies and no fried foods. Fortunate, but then I do like chocolate (but only if started). Mashed potatoes and roast chicken was a good first weekend meal, as I recall. Good luck. Yours Lenora

 

[hapl808]

I then introduce one easy to digest food at a time....I then know if anything is causing the problem.

I did this for years, thinking different foods or brands or preparations were causing my sensitivities. In retrospect, I think 90% of my reflux is related to exertion (mental or physical) and not diet. That's why it was so hard to narrow down foods - one day I would have a bowl of white rice before bed and feel 100% fine in the morning, the next day I would have a bowl of white rice before bed and wake up hacking and coughing with burning reflux. I was tracking food, though, and not how many minutes on the phone or computer.

One of the overwhelming things about this illness is how many seemingly harmless things can affect us. Doesn't make any sense which makes it hard to understand (and obviously impossible for others to understand or even believe.)

 

[Pyrrhus]

In retrospect, I think 90% of my reflux is related to exertion (mental or physical) and not diet.

You may be interested in this discussion:

Gastrointestinal Reflux as Dysautonomia
https://forums.phoenixrising.me/threads/gastrointestinal-reflux-as-dysautonomia.86644/

 

[lenora]

I did this for years, thinking different foods or brands or preparations were causing my sensitivities. In retrospect, I think 90% of my reflux is related to exertion (mental or physical) and not diet. That's why it was so hard to narrow down foods - one day I would have a bowl of white rice before bed and feel 100% fine in the morning, the next day I would have a bowl of white rice before bed and wake up hacking and coughing with burning reflux. I was tracking food, though, and not how many minutes on the phone or computer.

One of the overwhelming things about this illness is how many seemingly harmless things can affect us. Doesn't make any sense which makes it hard to understand (and obviously impossible for others to understand or even believe.)

Hi@hapl808.....Foods can be odd in how they affect us. I believe that rice contains some type of acid that can bother us, let looks like a safe enough food. We always eat brown rice, not much different in taste and I can it hot or cold. Still, I do vary foods.

Yes, you're right about exertion also causing reflux. I have a time schedule that I adhere to very carefully...if I do outside its bounds, there will be difficulty. It just takes time and patience to come to these conclusions. I hope you'll soon feel better.

See, Pyrrhus gave you a link to follow. They're usually quite informative, so thanks, Pyrrhus. Yours, Lenora

 

[hapl808]

Yes, you're right about exertion also causing reflux. I have a time schedule that I adhere to very carefully...if I do outside its bounds, there will be difficulty. It just takes time and patience to come to these conclusions. I hope you'll soon feel better.

See, Pyrrhus gave you a link to follow. They're usually quite informative, so thanks, Pyrrhus. Yours, Lenora

Yes, I was active in that thread about reflux and believe that mine is more likely to be LPR. I do believe it is more dysautonomia than anything else, but obviously the problem is how to treat it or fix it.

Unfortunately adhering to a schedule for exertion just means I can't talk on the phone, work on the computer too much, can't socialize, can't clean, can't work, etc. If I do all that, then my reflux goes away entirely. I can sleep flat. Food rarely seems to trigger it. But after not exerting myself for days or weeks or whatever, it comes back within 1-2 days when I exert myself.

Foods are weird. After thinking brown rice was healthy, after years I found that white rice actually agrees with me better. Not reflux, just better digestion. Specific types of rice are even better for digestion. But again, food choice is an element, but doesn't change the underlying exertion reflux trigger, just moderates it.

So the patience and food and symptom tracking led me to the conclusion, but my symptoms are severe enough that I cannot leave the house, have someone over, or even talk on the phone without it triggering my symptoms. It's not much of an existence. I would say I'm about five years in to this level of severity, 25 years into overall ME/CFS. I don't expect to feel better without an intervention, as I've tried various things from strict pacing, aggressive rest, various supplements, discontinuing all supplements, etc.

 

[pattismith]

@Pyrrhus @sometexan84 @GreenMachineX

Did you try Azithromycin against GERD?

To reduce acidity and fight my big oesophagus inflammation, I started to drink this mineral water (with pH 7.6) and it seems to work pretty well, although I'm not sure if it won't do other problems if I keep it too long.

S.Pellegrino - Wikipedia

 

[lenora]

Yes, I recognize that. It's sold everywhere in Italy and offers a good source of earth salts and balanced minerals & electrolytes. When we travelled in Italy years ago, we drank it frequently. Even Italians did. Yours, Lenora