Now very severe HELP

[Helen]

The major problem is that he is still getting a new crash every day. Sometimes it is caused by his heart rate which is going up (POTS?), sometimes in connection with intestinal problems, and so on.
Has somebody an idea to solve the problem with the heart rate?

It could be due to low potassium, and if so it may get severe but don´t supplement potassium without being told to by a doctor.

I hesitated to post, but I just feel I must say I´m worried as Martin is in such a bad condition. I was in medicine before. You, Michael, are doing a great job by helping him, though.

Before, we weren´t allowed to give medical advice on the forum, and it worries me to read the suggestions. In my case I would rather go to the ER, or see a doctor elsewhere, than following advice on an Internet forum. People are trying to help, but we can´t know what Martin´s needs are. Wishing Martin best of luck and thanks to you as such a good friend of him.

Edit: increased pulse is sometimes in PWME also due to low blood volume. A good doctor notices this when measuring the blood pressure. Among other possible reasons...

 

[gregh286]

Poor martin.
Some good comments on here....electrolytes....also aminos maybe useful.
The HR thing can be especially volatile after eating carbs. I never found it a great idea eating carbs in crash....always made me more.toxic. little and often will avoid insulin spikes and volatile HR.
I really wish him all the best. Im sure hes pretty frightened.

 

[mrquasar]

I would definitely seek immediate medical attention for him if he's continuing to deteriorate.

 

[Marky90]

Sending

 

[NotThisGuy]

Im so sorry to hear about this.
Maybe the next time you try to feed him potatoes boil them with a lot of water and remove the foam that builds on top.
That helped me when I wasn't able to tolerate anything.

To everyone here saying to seek medical attention:
yea, this is probably the best thing, if they would help him.

But you dont know the risks involved here in germany if you get a Dr. who doesn't give a fuck about your condition. And those doctors represent the majority

Chances are very high that he gets diagnosed with an eating disorder and will be forced into psychiatry.
That happened countless times before with severe CFS patients.

When I was in a very bad shape 6 months ago I went to the ER aswell.
Diagnosis: Eating disorder

You are doing an awesome job Michael trying to avoid the hospital as long as it is possible. I hope he can recover soon.

I wonder if it is this sudden climate change here in germany that is giving him such a hard time.

I also begin to crash very easily now allthough I was kind of fine the last few months.
No muscel weakness the whole last few months but today its really awful.

I guess molds are heavily back with this "warm" and moist weather...

 

[Martin aka paused||M.E.]

Hey guys
thank you all.
The Problem is not eating itself but how my gut reacts (cramps, sweatening, high Heart rate)

 

[Martin aka paused||M.E.]

Perhaps SIBO? @ljimbo423

 

[Zara]

I had and still have problems with chewing, swalloing and stomach issues.
My esophegus cramps up and it feels like burning pain and very dry feeling in the mouth and esophegus. When food reaches the stomach it is as if a stone is in my stomach. It hurts so bad. When swalloing the food sticks in my upper esophegus and i start to choke.
The esophegus is in a spasm. The stomach does not expand and digest. My heart rate goes up and i feel terrible and exausted and after a meal i have to lay down.
This all are symptoms of autonomic nerves problems. When you relax you digest food better. When you are flight and fight modus your digestion blocks and yor brain tells your body that it has no energy or time to digest because of hightend alarm or invader.. This is very scary symtomps. But i think the problem is in our brain and autonomic nerves system. Normally digestion is a proces you dont think about it and it function on a automatic pilot. But now is defected.

I read somewhere that lactic acid build up causes hp to decline. This low hp cause dryness and maybe also inflammation.
I got a endoscopy of my esophegus and stomach. During this procedure oxygen is blown into esophegus and stomach and my body reacted very harsh on the oxygen. This procedure i took without anesthisia. Really horendes experience. So this abnormal reaction on oxygen got me thinking of problem we might have such as hypoxia..or the tissue nog able to absorb the oxygen.
The results of biopt of esophegus was a low a typical inflammation. The moment of the biopt was taken after 2 month of taking pantoprazol. So pantoprazol had helped with tuning down inflammation. However after four months taking pantoprazol i stopped taking them and after 2 weeks problem started again heavily. Now i am taking them again. But would like to research it more in hospital, but when the problem is in the brain as biological and not psychological who is going to believe you??

@MartinDH so you know our problem is not wanting to eat or afraid to eat or afraid to become fat.. no our problem is a brain and autonomic nervous system problem. But doctors are short sited and dont really listen to us.

 

[Doornroosje]

Hi,

Your situation is very relatable. It's awful indeed.

I would try to avoid a hospital too (but if needed its needed) but I would recommend someone of your medical team keeping an eye on you. Even if it's just your friend sending some short updates by mail (thats wat my parents often do). Really hoping you have a supportive gp or m.e specialist.

In my opinion trying a lot of new meds/sups doesn't seem a really good plan neither atm because your body is already fighting so so hard but saline infusions might be a good idea to try. They increase blood volume and it can help with your orthostatic intollerance and dizziness/heart issues. It's only symptom relieve but I read that it might help recovering from a crash too.

Sending you and the people surounding you lots of strength. Hold on!

 

[Lisa108]

Hi, @MartinDH , good to see you back again.

Perhaps SIBO?

Hard to say without lab results... could be so many other things. (sigh)

@Zara : I like your theory of the fight-and-flight modus messing up the digestion. Sounds reasonable.

Sorry to hear about your horrible experience during the endoscopy. Did they measure your amount of gastric acid? Just asking because low gastric acid (hypochlorhydria) may cause similar symptoms as too much of it. Proton pump inhibitors like pantoprazol can mask the problem.

Digestive encymes helped me a lot. It was a german brand of pancreatic encymes.

I was up to test Betaine HCL next, but then tried Auto Immune Protocol (AIP) for 3 months. I'm on Paleo diet now and digestion is much better.

 

[ljimbo423]

Hey guys
thank you all.
The Problem is not eating itself but how my gut reacts (cramps, sweatening, high Heart rate)

Perhaps SIBO? @ljimbo423

That is very possible. If the food is feeding pathogenic gram negative bacteria in the gut, that would increase the amount of lipopolysaccharides in the blood, if you have a leaky gut, which is very common with sibo.

Lipopolysaccharides, even at extremely small levels cause a significant immune system reaction, which could explain the sweating and high heart rate.

Sweating and high heart rate are also very common with sepsis and leaky gut is a very mild form of sepsis.

All the best, Jim

 

[halcyon]

The Problem is not eating itself but how my gut reacts (cramps, sweatening, high Heart rate)

I haven’t read the thread in depth so I don’t know if this has been brought up but, this sounds a lot like mast cell activation symptoms. Now, being in a fragile state in the middle of a severe ME exacerbation is the worst time to start playing around with medication, but you could work with a doctor on trying some antihistamines and stabilizers to see if you can abort these episodes.

 

[MichaelK]

Hi all,

unfortunately I can't be that active on the forum due to Martin's severe condition and other time consuming issues, but again I want to thank you all for your input.

On Friday we moved Martin to his parental home with a patient ambulance. It was necessary due to different aspects (his parents don't have to commute anymore; his doc can visit him more often; ...) He took two pills of Ativan. The transport was good and for some hours his condition improved a lot. But he made the same experience than others: after the effect of Ativan was gone his condition became even worse than before.

Now it is even difficult for him to talk more than a few sentences. He asks me if there is a possibility to get a tranquilizer/calmative to get a better sleep (his night often ends at 3 a.m.) and to relax. Currently he is taking a normal sleeping pill (don't know the name; I will look it up tomorrow). Do you have any suggestions or links to other Threads/Forums with some ideas? The side-effects shouldn't worsen his gut problems.

There is another Thread which describes improvements with opioids but I think that is to excessive at the moment and the doctor won't prescribe that. We are also thinking about medical marijuana.

 

[Lisa108]

He asks me if there is a possibility to get a tranquilizer/calmative to get a better sleep (his night often ends at 3 a.m.) and to relax.

Sorry, I'm of no help here...
Just wishing that things will improve rapidly! Kind regards!

 

[Gingergrrl]

I haven’t read the thread in depth so I don’t know if this has been brought up but, this sounds a lot like mast cell activation symptoms.

I actually had the same thought and this might be something to look into @MichaelK (in the future when you have more time).

unfortunately I can't be that active on the forum due to Martin's severe condition and other time consuming issues, but again I want to thank you all for your input.

I wish I had some more feedback to offer but like everyone else, I am hoping that Martin starts to feel better soon. You are an amazing friend and roommate.

 

[StarChild56]

I don't know what to say, other than I hope that you are healing, @MartinDH and that you are a good friend, @MichaelK . Sending positive thoughts, vibes, prayers and light your way.

 

[Learner1]

@MichaelK @MartinDH I just caught up with this thread and am so sorry to hear of all of this.

Mast cell activation may indeed be a possibility - it may explain some of the hyper-reactivity. Medications that can help are H1 and H2 antihistamines - my doctor prescribed ketotifen, diphenhydramine, and fexofenadine. Vitamins C, 5-MTHF, and Methyl B12 can help too.

Amino acids may be helpful for many reasons. Many ME/CFS patients burn amino acids to make energy, and run short. Not being able to eat can make this worse. Symptoms can include sleeplessness, anxiety, depression, fatigue, etc. One can get IV of oral forms of pure amino acids. In particular, 3g each of ornithine and citrulline help me sleep. GABA and taurine can help, too. For energy, BCAAs can be helpful (isoleucine, leucine, and valine).

Are there intestinal parasites or a bacterial infection? If there are, treating them may be very helpful.

And is there a systemic infection, either vital or bacterial. And have immunoglobulins with subclasses and NK (natural killer) cells been tested?

Propranol or Mestinon may help POTS dizziness.

These are just ideas - this needs the help of a medical professional.

Best wishes...

 

[Ravn]

Wishing you strength and courage @MartinDH, @MichaelK and also all your friends and families.

Unable to read the whole thread so may be repeating earlier posts.

I did see somebody warning of eating disorder misdiagnosis. A very valid concern though it's worth remembering that the word 'anorexia' has had a similar fate to 'chronic fatigue'. Both are just symptoms that can occur in any number of illnesses. 'Anorexia' just means you've lost your appetite or ability to eat. 'Anorexia nervosa', on the other hand, is the eating disorder. Unfortunately many people, including doctors, use the terms interchangeably so as a patient you have no idea what they really mean unless you specifically ask.

A few years ago I was tested for SIBO. This involved blowing very hard and long into a sort of breathalyser machine every 15 minutes for 3 hours. It was exhausting then. Now with ME it would likely send me into weeks of PEM so I would advise caution if this particular test is suggested to you.

Have you considered trying an Elemental diet? This is used for acute inflammatory bowel disease and sometimes SIBO. Depending on individual sensitivities the commercial formulas may or may not work for you. In that case you could try to find a dietitian to custom design something for you.

You definitely need good professional medical help here. Finding it will be easier said than done I fear. Is it an option for a sympathetic local family doctor or similar to collaborate with a specialist further afield or even abroad? Any local patient advocate organisation that could help with finding the right contacts?

With you in spirit.

 

[kurt]

Hallo Martin...

What you describe reminds me of my worst CFS time, when I was reacting to most of the food I was trying to eat. A lab in the US tested me for leaky gut food allergies (lymphocyte reactions to 500+ foods) and their information helped stop the reactions. I don't know if the test is available in Germany, but I have sent you a message with some information, please look for that in your inbox above... You mention increase heart rate, and that is what also happened to me every time I ate a food I reacted to. Over time this can get very serious, I lost a lot of weight and the doctor did not think I would survive. But I changed my diet completely, starting with just two or three foods I could tolerate, and built back up from there. I hope you find some answers.

 

[AnnaDove]

@kurt, CIould you please share the name of the lab and the test. I am down to 10 foods myself. Thanks