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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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POTS?

Messages
6
I went to a doctor and she diagnosed me with multiple problems. One is reduced bile secretion activity

where it makes me to not process fats well. My stool colors yellow after eating bunch of nuts and I have

stomach pains sometimes. I have this issue for years. Then, she found that my neurotransmitters are out

of wack, specifically, low serotonin. My nervous system is tense and it got worse since last June (I was to her before).



Accordingly, I started getting tinnitus in right ear, some signs of pulsatile tinnitus, jaw pain. My large intestine shows

severe dysbiosis, lack of bacteria such as Lactobacillus Helveticus, that produce neurotransmitters in the gut. According to

the doctor, the brain are unable to signal correctly for my bile issues (no stones or sludge in there, checked multiple times), hence

fat digestion issues. Also, I cannot sleep for years. Around 6 months ago, my symptoms got worse with heart palpitations and heat

intolerance. Also, I have caught episodes of higher blood sugar than usual. I was to endos, who told me I failed OGTT because of eating

restrictive low-carb diet. Currently, I find that my BG is hovering around 4.8-5.8 if I ear cheese, chicken, vegetables and other low carb options.

They told me it is not diabetes (yet) but I should conserve my pancreas in some way.



The doctor told me pancreas is overworked because it produces enzymes for fat digestion like crazy, compensating for bile secretion issues.

If I fix this, then pancreas will recover more capacity to process carbs.



She is not the type to prescribe medicines, but unfortunately in my case, she had to. I started Zoloft (25mg morning) and 12.5mg Seroquel (evening).

Yesterday evening, Seroquel caused me severe tachycardia of 120 resting heart pulse, drowsiness and feeling horrible. I was told to cut both meds dose

in half and use it again today, which I am afraid of tbh. In addition, I was told to drink teas that stimulate bile secretion, use lecithin, spirulina and chlorella,

start visitng psychotherapist and heavily invest in doing relaxation activies like yoga, pilates.



Finally, I think there is a definite issue with POTS. My heart rate goes way up on standing up, with usual symptoms, the blood pressure goes up as well.

It was confirmed by a doc in emergency room, though they mainly mentioned orthostatic hypertension and did not mention my pulse much.



Those issues are killing me at age 25 and could someone help untangling them? I got my Ancestry DNA results but am too anxious right now in opening

that Pandora box up...
 

Richard7

Senior Member
Messages
772
Location
Australia
Ok re PoTS

with PoTS the simplest thing is to start drinking water with electrolytes. I imagine that you have salt at home so a good starting point might be to disssolve a tsp of salt in a large glasss of water and drink it and see if it helps.

It is summer where I am so I make up a lot of (mostly herbal) tea add salt and potassium and then cool them in the fridge. I think it is best to listen to your body rather than trying to follow someone else's recipe.

But there are mixtures with names like "rite salt" or "lite salt" available in supermarkets that contain equal proportions of sodium and potassium chloride and that is probably the easiest way to get hold of some potassium. And you might like to experiment with making up drinks with 1-1.5 tsp of one of these mixtures per litre so that you can drink them over the day.

It would be best of course to see a doctor who understands how to treat PoTS, but if like me you are unable to find one you may be interested in some of my experiments.

I found that a variation on Oral Rehydration Solution worked well for PoTs : 3.5g salt, 2.25g potassium chloride, 2g bicarbonate of soda (NaHCO3) and 20g of glucose. But I could not really handle the glucose, it made me feel ill after a few days.

So I made another sort of mixture using amino acids in the place of the glucose: 3.5g salt, 2.25g potassium chloride, 2g bicarbonate of soda and 12.5 of an amino acid mixture such as EAAs mixed with some glycine and glutamine. This was great for the PoTS and I found that it worked better still with added inositol, b2 and a powdered multivitamin, but your results could be very different.

I also found that it worked really well for a couple of months and then became a bit of an issue, it turns out that I am not great at converting phenylalanine into tyrosine and phenylalanine was, of course, in the EAA mix. Luckily I have found a doctor who is willing to look into that part of the problem.
 

Richard7

Senior Member
Messages
772
Location
Australia
With the glucose tolerance test I suggest that you look closely at the data.

I know that the Melbourne group (Armstrong, McGregor, Butt etc) have found that pwme/cfs have high or high normal fasting glucose and that my a distinctive OGTT result where the glucose concentration stays pretty flat and the insulin goes really high. My doctor and I mistook this for insulin resistance.

Having said this it seems from the metabolomic research that pwme/cfs do not do much glycolysis so lowish carb is probably a good idea. I seem to work best with intermittant fasting. I generally eat two meals in a 6 hr window.

But your experience may be different.
 

Richard7

Senior Member
Messages
772
Location
Australia
With the bile.

You may want to look at this presentation from Chris Armstrong

My approach to this has been to take betaine HCL with pepsin, ox bile and digestive enzymes.

The betaine HCL acidifies the stomach, in an acidic environment the pepsin will break the proteins into peptide chains. The digestive enzymes I take are pancreatin (CREON brand) and Klaire Labs "Sibb Zymes".

The pancreatin is a pancreatic extract, so it emulates the human pancreas and contains lipases, amylases and proteases but the amylases and proteases are ones that break long carbohydrate and peptide chains (respectively) in the middle.

The Sibb Zymes are meant to replicate the action of intestinal brush border enzymes by nibling individual amino acids and sugars off the end of these chains so that you can absorb them.

The ox bile kills of a lot of microorganisms and emulsifies the fats so that the lipase can break them into the free fatty acids and monoglycerides that you can absorb.

Based on Chris armstrong's presentation I would think that getting this right would help with the dysbiosis.
 

kangaSue

Senior Member
Messages
1,849
Location
Brisbane, Australia
It all sounds like a problem of autonomic dysfunction to me.

A Tilt Table Test and further autonomic test work-up would be in order as a gallbladder low ejection fraction is more commonly a neurodegenerative thing involving vagus nerve dysfunction and that often means Autonomic Neuropathy (AN) too.

The gastrointestinal involvement then can be same as in Diabetic AN and gut dysbiosis can then result where the motor function of the gut becomes impaired and the "cleansing sweeps" of the GI tract can be insufficient to keep everything moving along so allows an overgrowth of harmful substances.
https://link.springer.com/content/pdf/10.1007/s00125-015-3826-y.pdf
 

JES

Senior Member
Messages
1,318
She is not the type to prescribe medicines, but unfortunately in my case, she had to. I started Zoloft (25mg morning) and 12.5mg Seroquel (evening).

Yesterday evening, Seroquel caused me severe tachycardia of 120 resting heart pulse, drowsiness and feeling horrible. I was told to cut both meds dose

in half and use it again today, which I am afraid of tbh. In addition, I was told to drink teas that stimulate bile secretion, use lecithin, spirulina and chlorella,

Seroquel is a neuroleptic that is used primarily for serious mental diseases like schizophrenia, depression and bipolar disorder. It's usually not first line treatment due to potentially serious side effects, which include changes in blood pressure, seizures and high blood sugar (if you already have blood sugar problems you especially shouldn't be on this medication). I'm quite frankly amazed that a doctor would prescribe a neuroleptic for something like "neurotransmitter problems", which is not even a disease. If that was the case it seems to me as irresponsible.
 
Messages
6
Yes, she said lack of bile is one of the marked factors on my messed up gut. She believes that bile stimulants can work though. Here is why. Stuff like bitters, say Swedish bitters, when I took them, my liver was gurgling like crazy and my stool colour was back to normal brown even with more fatty diet. However, I noticed they stopped working as well after a few weeks so discontinued. Bitter teas, according to her, should work as well. I also tried TUDCA which I attribute to making my liver enzymes amazing - I sometimes had elevated ALP, not it is nice mid range all the time. This stuff is potent and always works - gurgling is profound.

I have never had HIDA scan. I was to gastro doctors and they never deemed that necessary but advised me to stimulate bile production and see what happens. I can tell you that I am a bad patient - I did not follow any of her regimens for longer than a month, life just takes over and I forget. It seems that my gallbladder is simply not getting much bile at all because it is normal size and there is zero signs of dyskinesia. According to the doctor, it is messed up signaling. She did not say it is neurodegenerative because it would literally mean me having this nerve ending destroyed for 5 years already. Note that my fat soluble vitamins are fine, so some of the fat is broken down indeed.

I also had unusual experience of my regular moody self. Two years ago, I started making kefir. Usually, it made me feel okay, but one day, not sure what happened, I felt incredibly euphoric whole day, the effect was so profound, people noticed and commented on it. I hoped to replicate that but next day and subsequent batches did nothing.

I discontinued seroquel after reading that people prone to diabetes or glucose intolerance developed the disease after just a year. I shall discuss the drug with another psychiatrist. I do have depression by the way. Don't think there are any signs of schizo or bipolar though.

She did not want to prescribe any drugs but situation worsened in 6 months and she deems them necessary. I am a bit nervous about adding anything to my body since it can react negatively and push me over the edge to mental illness category. The doctor said my nervous system is so tense that next step would be psych ward for a month, to manage my dysautonomia. I also spent some time Skyping with CFS sufferer some time ago, and his issues started during the studies and had similar symptoms. He did not connect to Skype for months and am afraid he is way worse off now ... don't want that.
 

kangaSue

Senior Member
Messages
1,849
Location
Brisbane, Australia
According to the doctor, it is messed up signaling. She did not say it is neurodegenerativ
Messed up signalling and neurodegeneration are the same thing in this context.
Yes, she said lack of bile is one of the marked factors on my messed up gut.
It seems that my gallbladder is simply not getting much bile at all because it is normal size and there is zero signs of dyskinesia.
Messed up gut generally infers pain as well, pain is the sign of biliary dyskinesia. Typical text book presentation is RUQ pain worsened by eating but plenty of atypical people around in forums where dysautonomia is part and parcel of the mix.
 
Messages
6
I was screened for dyskinesia and it was negative. My grandmother had it when she was younger but was fixed up with some "violet tablets". I had ultrasound of all organs and a CT of most of them, showing nothing abnormal.

The neurologist said this; somomatophoric dysautonomia. Prescribed treatment is rest, good food, supplements, probiotics, antibiotics to kill h pylori for the ulcer, meditation and yoga and little computer screen time. See if it helps in a month basically.