Help with ideas on prokinetics for gastroparesis and advice on Mestinon

[serg1942]

Hi everybody:

I suffer from severe gastroparesis. I can only take 3 foods (fruit, turkey and bread), and in very small amounts. I have lost more than 10 kg, and I’m loosing weight every day.

I think I have gastroparesis, although I haven’t been tested for it. However, some prokinetics such as alizapride or metoclopramide (dopamine antagonists) have been really useful in the past, but I developed tolerance to these drugs. I have also tried Motilium and Spasmomen, with no benefits. In this regard, neither HCL nor digestive enzymes are helpful either.

My G.I. symptoms include, mostly, very severe dyspepsia 4-5 hours after eating something that I don't tolerate. I'm really desperate as I'm afraid of getting malnourished.

I'm trying Mestinon, as I have read some folks describing that it helps for grastroparesis (plus this property has been shown in a couple of studies). I took only 1 dose of 15 mg for a few days, but it gave me strong GI symptoms, including bloating, cramps and gut pain/inflammation.

For those who have taken mestinon, do these GI symptoms improve over time? Would you recommend to give it a try until I can tolerate a higher dose? I really don't know what to do, because I cannot afford many days eating even less due to these symptoms.

Also, can you recommend any other drug that acts as a prokinetic? I remember that 15 years ago, just after falling sick, I also had severe GI symptoms, and they went away by taking an antidepressant (problem is that I don't remember which one I took).

Thank you so much in advance for your help. Please let me make clear that all drugs I try, I do it under my doctor's supervision (thing is that he is more lost than me...).

Best wishes!
Sergio

 

[Hip]

Were you ever properly tested for enterovirus, @serg1942, by for example the sensitive ARUP Lab micro-neutralization antibody tests used by Dr Chia, or using Dr Chia's stomach biopsy test for enterovirus?

This study found a relationship between enterovirus infection and gastroparesis.

Dr Chia's main treatment for enterovirus ME/CFS is oxymatrine, but in around a year or two, some potent new coxsackievirus B antivirals should be available (see here).

 

[keepontruckin]

The other thing to consider is lyme and its co-infections.

 

[JES]

I recently trialed mestinon at a low dosage (10 mg), but I can't say it would have consistently improved my bloating and slow transit times. You may want to try a lower dosage if you got prescribed the more standard 60 mg dosage, which is way to high for many of us. In theory you are correct that this type of acetylcholinesterase inhibitor should help to speed up motility.

Regarding antidepressants, incidentally, I recently found that after taking an SSRI for a couple of weeks, I started having more regular bowel movements and seemingly also less bloating. Actually it was about the only positive effect I had from this antidepressant, but if you can tolerate the side effects, it may be worth a try.

 

[serg1942]

Thank you so much for replying. No, I have never been tested for enterouvirus through the proper test, and yes, I agree that perhaps coxsackie or other strains of enterouvirus could be playing a role in my severe grastroparesis. As for Lyme, well, I am positive through LTT, my CD57+CD3- are low, my CD38 are normal, and some inflammatory markers associated to Borrelia B. show regularly high in my blood test. So, yes, lyme is probably playing an important role as well. After all, IV GcMAF did cure my GI issues 100% for the 7 years I took it, what points to the immune component of the picture...

However, I need a rapid solution for my acute problem in the form of a drug, or I'll get malnourished soon. I have tried the ABX route for years with no succes, and, as for the possibility of being tested for enterouvirus, I couldn't afford neither the biopsy nor the antiviral treatment... (and even If I could afford it, and if antivirals worked, it would take too long...).

 

[serg1942]

Thank you @JES for sharing your experience. Yes, I'm going to research antidepressants and let's see which one could speed up motility...

 

[Sushi]

Thank you @JES for sharing your experience. Yes, I'm going to research antidepressants and let's see which one could speed up motility...

Boosting serotonin should help with motility issues. Have you tried 5HTP?

 

[kangaSue]

I think I have gastroparesis, although I haven’t been tested for it. However, some prokinetics such as alizapride or metoclopramide (dopamine antagonists) have been really useful in the past, but I developed tolerance to these drugs. I have also tried Motilium and Spasmomen, with no benefits

The site is no longer active but look through the four links following the word 'Introduction' for lists of many meds that can be tried;
http://www.digestivedistress.com/tx
Sulpiride and levosulpiride get a mention, meds that are often used in your part of the world for 'Functional Dyspepsia"

In the antidepressant family, mirtazapine is the one that I had most success with.It can be a case of working through them to find the one (or a combination) that works best for you. Amitriptyline and nortriptyline are the two most commonly prescribed first, and at low dose usually as higher doses as for depression can have an opposite effect. Better to combine two at low dose than increase the dose of just one.

Iberogast is a herbal prokinetic that some find to work well.

I'm trying Mestinon, as I have read some folks describing that it helps for gastroparesis. I took only 1 dose of 15 mg for a few days, but it gave me strong GI symptoms, including bloating, cramps and gut pain/inflammation.

Personally, autonomic dysfunction inhibits blood flow to my bowel (chronic mesenteric ischemia) which can cause gastroparesis and the only med I have found to have significant effect on abdominal pain and gastroparesis symptoms is a nitrate med, nicorandil. (Cialis or Viagra are known to help too with this sort of issue causing gastroparesis).
For those who have taken mestinon, do these GI symptoms improve over time? Would you recommend to give it a try until I can tolerate a higher dose?

If acetylcholine signalling is part of the GI problem, Mestinon can act as a motility agent too. I have Autonomic Neuropathy too bur Mestinon given for this didn't help any with stomach motility, just gave the bowels a bit of a hurry up. That is where Mestinon is known to have most prokinetic effect though and for some people with gastroparesis, moving the bowels can help with gastric emptying too.

I did, and still do, have a lot of trouble tolerating most things. Prior to the nitrate, mirtazapine and low dose naltrexone were the most effective for helping with abdominal pain. Taking Creon pancreatic enzymes was also a helpful measure.

I suggest getting an ANA and ENA antibody blood test panel done to rule out the common autoimmune conditions known to involve gastroparesis, and have a Doppler Ultrasound done of the mesentery arteries to check for a bowel blood flow issue. These soemtimes come with having a bruit sound so get a doctor to listen for this too (in your epigastric area).

 

[Carl]

A few things come to mind. One is Choline deficiency which can affect acetylcholine levels which might be contributing to your problems because the liver phase 2 detox uses up the majority of the choline for detox purposes. This is what contributes to constipation. Supplementing with Choline such as Choline Bitartrate (41% choline) can increase your intake without eating food which you have problems digesting. It can be mixed with warm water and drank.

While on the subject of drinks. Are drinks also a problem or is it more sold food? Getting as much nutrition in fluid form might be worth trying while you attempt to rectify things.

A natural acetylcholine inhibitor is Ginkgo Biloba, if you can tolerate that because some people experience anxiety when taking it. I do not.

re:The nervous system in the stomach. This is one of the earliest areas to degrade, it did with me, but high dose B12 helped to improve things. Damage to the Vagus nerve can cause gastroparesis.

Chances are that you have an overgrowth of bacteria in your stomach due to your slow stomach emptying and hypochlorhydria. This is far more significant in CFS than most people believe. Researchers think that it is normal, it is not, it is common which is very different. Stomach acid production is crucial to digestive health.

Myelin sheath degradation could be an important factor therefore making sure everything is working as well as possible, including the necessary nutrients hopefully will improve things.

 

[Hip]

It's worth pointing out that gastroparesis can also be a symptom of craniocervical instability (CCI). Have you been following the unfolding story of the CCI connection to ME/CFS?

 

[serg1942]

Thank you guys for your thorough replies!

@Sushi yes, boosting serotoning could be an option, although I wouldn't try 5HTP at the moment, considering the metabolic trap hypothesis published by Dr. Phair and Dr. Davis (perhaps a viable future treatment will consist on avoiding tryptophan from the diet).

@kangaSue , I will definitely look into the drugs you mention in your detailed message. And, as for the tests, I think I ruled out typical autoimmune diseases through the rutine antibodies test. However I have never had an ecography of the mesenteries, and it is something that would really make sense...


@Carl , thanks for your ideas! I took choline supplements for years, but they never helped with digestion issues. In this regard, I guess that acetylcholinesterase inhibitors such as mestinon should work better, as they increase choline levels only in the neuromuscular junction. As for B12, I also injected it for years with no benefits for my GI issues either. Finally, regarding the role of dysbiosis in CFS, I think you are right in that it is very important and probably contributes to the digestion impairment. However, I have also taken tons of pre- and probiotics and gut-specific and pulsed antibiotics, plus many other drugs and supps to try to fix the problem, but unfortunately I never got any benefit from these approaches... Probably the systemic inflammation and the altered immune system prevent these therapies from working in my case...(Note that just by pushing my immune system towards a healthier Th1 immune profile with GcMAF (although we don't really know what GcMAF really does), did resolve in the past all my GI problems).

Hi @Hip , yes, I'm going to get the upright MRI this September, and will go to Dr. Gilete's consultation to see if I might have CCI... I don't have OI, I am not hypermobile, nor I have symptoms clearly related to neck movements, etc... But still, the ANS is wrecked in every ME/CFS patient, even without the more obvious CCI symptoms. So we'll see what I find...

Thank you again guys for your help. I will let you know if any of these options finally work..

Best wishes,
Sergio

 

[outdamnspot]

@serg1942 why are you no longer using the GcMAF?

 

[Sushi]

@serg1942 why are you no longer using the GcMAF?

Injected GcMAF is no longer available and other forms have not been helpful for many of us who used to inject it.

 

[Mânca]

@serg1942 my sister has severe GI symptoms like stomach pains, nausea, dysphagia , she lost weight (a lot ) . We thought to be gastroparesis so we went for an endoscopy - she had bad gastritis due to Helicobacter pylori so at the moment she is taking antibiotics for that.
About Mestinon - she is under Mestinon which was great for her in general ( shorted PEM, improved her POTS) but it can give you stomach pain , nausea . She increased the dose only when the GI symptoms disappeared and very very slowly. For example at the moment she decreased again the dose at 30 mg 3 times per day because of her stomach pain and bloating.

 

[serg1942]

Hi @kangaSue , I went to my doctor and he agreed that mirtazapine would be a good option to try. So I'm gonna start it tonight. However I'm a bit worried about taking mirtazapine together with LDN, and you happened to take both at the same time. Do you know if they can be taken together, or whether I should take them apart during the day? (problem is that both drugs work better taken at night...). Again, I'm not looking for medical advive here (my doctor just told me that he didn't know of any interaction between the two drugs, but the most information I get, the better!) thank you!

Sergio

 

[serg1942]

Hi @Mânca , thanks for replying. I am sorry your sister is having severe GI symptoms as well. It is good to have found HP and gastritis though, as it is possible that she improves by treating it. Unfortunately I did an endoscopy a few months ago showing no HP and just mild gastritis, so this doesn't seem like a possibility for me.

As for Mestinon, I appreciate you letting me know of your sister's experience. Given that I don't suffer from orthostatic intolerance, and that the drug gives me more GI symotms instead of helping me with them, I am not gonna try it for now. Perhaps it would help over time, if increased slowly, but I don't have that long given my acute and severe GI issues.

Thanks again, and wishing the best for your sister,
Sergio

 

[Carl]

Sergio, Helicobacter Pylori is the only recognized stomach pathogen but it is not the only one capable of causing such symptoms. I have read a lot of research papers on this.

Two examples:
Urease-Positive Bacteria Other than Helicobacter pylori in Human Gastric Juice and Mucosa - Brandi et al 2006
Urease-positive bacteria in the stomach induce a false-positive reaction in a urea breath test for diagnosis of Helicobacter pylori infection - Osaki et al 2008
The 2nd paper by Osaki notes a range of micro-organisms present in human subjects stomachs which I at least recognize as being significant, even if medicine and researchers fail to understand the consequences. Which are highly significant. That is what happens when people ignore the clues that the body gives.
You can use Sci-Hub if you want to read the full paper.

BTW you did not answer an important question that I asked. Do you have the same problems with stomach emptying with liquids? I ask because your body badly needs nutrients and if liquids cause less problems then using liquids might at least provide some much needed nutrition.
[MODIFIED]

 

[search4health]

Ginger and artichoke help me (to a degree) with slow motility. There is a supplement called motility activator with both in it. However I have had more success with higher doses of both than they put in motility activator and you can buy them for cheaper prices than motility activator costs because it is quite expensive.

 

[kangaSue]

Hi @kangaSue , I went to my doctor and he agreed that mirtazapine would be a good option to try. So I'm gonna start it tonight. However I'm a bit worried about taking mirtazapine together with LDN, and you happened to take both at the same time. Do you know if they can be taken together, or whether I should take them apart during the day? (problem is that both drugs work better taken at night...). Again, I'm not looking for medical advive here (my doctor just told me that he didn't know of any interaction between the two drugs, but the most information I get, the better!) thank you!

Sergio

I don't remember if I took both at the same time but I'm one that couldn't sleep taking LDN at night so took it in the morning.

 

[voyteck]

serg1942, I am having very similar issues but mine started as part of hellish withdrawal after stopping AD / antianxiety drug buspirone.

Went through 3 courses of antibiotics - form lamblia, SIBO, HP (hell of nausea and even more malaise). Had 2 GI endoscopies and colonoscopy. No relief.

I am sure it's some damage in my brain or brain-gut signalling (cause I've been having other serious problems since that time).

So cutting to the chase, the only thing that seems to help is ginger. Both forms: fresh and dried (0,5 - 1 g), (though fresh seems to be better somehow). It helps not only with nausea but also a bit with bloating and pain. It's the only thing I tolereate. But obviously it's not enough.

As to the nutrition, about 50-80% of calories come in liquid form - my local equivalent of Nutridrink (very expensive if you take it every day...). Only this way I can get reasonable amount of calories. I suggest that you check it.

Other things I tried.

• Trimebutine (from gastro) - cannot tolerate even 1/2 dose; either weird drugged feeling or increased nausea.
• Sulpiride 25 mg (from gastro) - this one I tried only once (though not afraid of it cause took it with ADs 2 years ago). It seemed to help for stomach pain but stopped it cause I am afraid it could exacerbate my restlessness/akathisia. Maybe will try it again...
• Mirtazapine (from psychiatrist). Unfortunately 7,5 mg didn't help (already 4 months on it) and didn't tolerate higher dosages.

The only option I see now is sulpiride trial (very reluctant).

How is your trial with mirtazapine going (what dosage)?

@search4health Could you specify what form / dosage of artichoke you're taking? I mean as standarized supplement or vegetable?