Now very severe HELP

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@Sundancer thank you for the very detailed descriptions. I will put all these options on my "new food for martin"-list and discuss that with the people we could activate to help us (pharmacists and a nitritionist). You and @pamojja give me the hope that getting rid of fresubin will lead to improvements in the next days. Big thanks!
 

Lisa108

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Hi Martin! Hope, you're already feeling better by now. Just wanted to add my two cents...

1. Food: Have you tried baby food? I was thinking of "HIPP Beikost ab dem 4. Monat", you know, those small jars...they have a short ingredient list (mainly vegetables), small portions, easily digestable... some other brands are organic, too.

2. D-Ribose: This gives me a little more energy. I'm up to 5g, 3x/day, dissolved in anything that I drink (mostly tea). I'm buying it in bulk at "Bulkpowders.de". Every now and then they have discount prizes up to 40%.... The "pure series" is without additives. (They have whey proteine and many other good stuff there, too)

3. Dizziness and nausea: This can have multiple causes, like low blood-pressure (from lying in bed all the time) but also from under-stimulation / stimulation deprivation (from lying in bed all the time, too).
If the latter is the case, you could try a little body-scanning, like: where do you feel your head touching the pillow? Left side, right side, back of the head... then you proceed to every other body part. Let go of tension. May give your brain some input about your actual position, so it could stop the dizziness/nausea.

4. Lab tests: I see you're having some tests. In case there are tests that your health-insurance is not covering and you want to do privately: I can highly recommand IMD Berlin. You can pre-order the blood-collection tubes (free of charge) and a courier service (Germany-wide, free of charge, too). I contacted staff members via email and phone, all responded very prompt and comprehensively. (My GP drew the blood sample and the courier came to my home.)

5. Hope you're back to base-line soon! Greetings from Kiel!

P.S. Your roomies are great!
 
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Hi

I wanted to ask whether you have checked level of iron in your blood. Especially feritine..if your stock on iron has dropped like in my case to level 8. Normal feritin for women is 20-100, men 20-250.
In my case it was in 2011 4 and later 8. So this also contributed to low oxygen in redbloodcells and making me more sick. My pots was getting worse. After 2 iron infusion my pots symptoms got better. But I noticed that after 2 infusions of iron my feritine keeps dropping.
Now I read somewhere that continues inflammation causes iron to drop. The inflammation eats the iron. Lots of people with auto immune diseases have low iron.
But be careful with iron infusion, i got a kind of allergic reaction with fever. And when taking iron infusion let it go slow, like 3 hours...

I hope you will recover soon...

Regards
Zara
 
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↓ Full text
Serum ferritin is an important inflammatory disease marker, as it is mainly a leakage product from damaged cells.
Kell DB, et al. Metallomics. 2014.
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Abstract
"Serum ferritin" presents a paradox, as the iron storage protein ferritin is not synthesised in serum yet is to be found there. Serum ferritin is also a well known inflammatory marker, but it is unclear whether serum ferritin reflects or causes inflammation, or whether it is involved in an inflammatory cycle. We argue here that serum ferritin arises from damaged cells, and is thus a marker of cellular damage. The protein in serum ferritin is considered benign, but it has lost (i.e. dumped) most of its normal complement of iron which when unliganded is highly toxic. The facts that serum ferritin levels can correlate with both disease and with body iron stores are thus expected on simple chemical kinetic grounds. Serum ferritin levels also correlate with other phenotypic readouts such as erythrocyte morphology. Overall, this systems approach serves to explain a number of apparent paradoxes of serum ferritin, including (i) why it correlates with biomarkers of cell damage, (ii) why it correlates with biomarkers of hydroxyl radical formation (and oxidative stress) and (iii) therefore why it correlates with the presence and/or severity of numerous diseases. This leads to suggestions for how one might exploit the corollaries of the recognition that serum ferritin levels mainly represent a consequence of cell stress and damage.

Maybe this says something about our red cells?
 
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Thanks @Lisa108 .

We tried to start with D-Ribose right after yor message. Martin had some left somewhere in his collection of medicine and supplements. Unfortunately his condition is still worsening after he started eating some pureed potatos and carrots in the last days in addition to the Fresubin. We want to stop the Fresubine now after the Thorne - extra nutritions finally arrived. I also made some homemade broth now.

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?

@Zara Perhaps iron is a problem. Thanks for the hint. In october he did a blood test and the result was a ferritin level of 86. But the situation changed and the next results we hopefully get in the next two weeks. Would you suggest to give him liquid-iron-II without knowing his level? Iron could be a problem because he haven't eaten anything except chicken, potato, carrots and those Fresubine (2,5mg iron per bottle, 5 bottles a day was his maximum in the last two weeks).
 
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Would you suggest to give him liquid-iron-II without knowing his level? Iron could be a problem because he haven't eaten anything except chicken, potato, carrots and those Fresubine (2,5mg iron per bottle, 5 bottles a day was his maximum in the last two weeks).

Liquid iron did not help me at all..and in it is lots of additive that is bad for your gut. The doctor at hospital gave me an iv iron direct in blood. But also this gave me allergic reaction.
But it is good to test ferritin and hemoglobibe etc..again.

I think the crash it is a accumulation of factors. But the only thing you can do is rest and controle your internal thouhgts and feelings. Cause anxiety and restlessness stimulates the autonomic nerves system in a bad way. Making sure he sleeps is the most important thing. Drink lots of water. Anti histamine works for me. It makes me sleep somewhat deeper and relaxes. Vitamine c high dosis also with complex b vitamine. To relax nerves system. concentrate on breathing in and out. Maybe as the rest said he has done too much..lactic acid builds up in brain and blood. And over time it explodes in body...


Hope the crash will end soon for him.
 

Lisa108

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I'm sorry to hear that Martin is not doing better. But there surely will be an end to this tunnel!

As for blood pressure: if the blood pressure is mostly too low, maybe adding some more salt to the broth and / or eating some licorice (Lakritze) could help?

Licorice (you can get licorice powder in any pharmacy, sometimes called "Salmiak-Pulver") could also help with nausea. Ginger, too.

Maybe more experienced members know better than me if salt / licorice may help stabilizing the blood pressure, so that the heart rate doesn't need to rise so much during physical strains.

At "the other forum" there is an article about "enhancing blood volume for me/cfs, POTS and OI". https://www.healthrising.org/forums...e-me-cfs-pots-and-orthostatic-intolerance.44/

But there are so many things that can cause dizziness, nausea, blood pressure problems, GI problems... Potassium deficiency? It's hard to give any advice... hopefully you will know more when the lab results come in!!!

Wishing you all the best! Lisa
 
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In his current condition he doesn't tolerate any food. Sometimes he ist just crashing after drinking water. We are thinking about parenteral nutrition. Do you think that could be a good idea for a few days and look how it works?
 

Lisa108

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Oh, crap! That sounds really bad... I'm so sorry to hear this!

I'm not a docotor, so this is only my personal opinion...

As @pamojja remarked, dehydration and electrolyte imbalance/deficiency should be looked at, especially now that Martin can't drink enough!
So, yes, I'd say, go for IV substitution. You'll need a doctor do this, but even on a sunday afternoon a Ringer solution may be possible to organize?

If Martin were up to drink a bit today, I (again, only my personal, inexpert advice) would look into producing or buying some WHO Trinklösung (oral rehydration solution). You can find recipes online (Wikipedia u.a.), also pharmacies sell granules you dissolve in water.

I hope so much that Martin will recover soon! Keeping my fingers crossed!
 

Joh

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In his current condition he doesn't tolerate any food. Sometimes he ist just crashing after drinking water. We are thinking about parenteral nutrition. Do you think that could be a good idea for a few days and look how it works?
Thank you for all you do @MichaelK! I know that hospitals are the worst places for patients with ME but that might be a time to consider a hospital stay. But I guess you have already considered that?
Please tell Martin that he's in our thoughts.
 
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Thank you all again and again! Those up and downs are really difficult to handle.

He doesn't tolerate any food fortunately "only" means that he is crashing often after eating or drinking. But we got fluid and nutritions into him and fortunately it stabilized today a little bit in comparison to yesterday and he could drink a lot (with nutritions). But even if it stays like this it's diificult for him to recover if he crashs again and again. So perhaps it is an idea to do parenteral nutrition to get everything in his body and he can try to recover without crashing. What is your opinion?
@Lisa108 I will have a look at the WHO trinklösung. Thanks for the hint!

@Joh I really hope that Martin will never be in such an emergency situation, but before we drive him to hospital, I would carry all these things from hospital to martin on my own. I can only try to imagine how horrible a stay in hospital would be for a CFS patient.
 

Lisa108

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Thank you for the update, @MichaelK!
fortunately it stabilized today a little bit in comparison to yesterday and he could drink a lot (with nutritions).
This sounds good to me!

The WHO "Trinklösung" is about getting the absolutely needed basics into the body (some glucose and electrolytes), it is not enough to feed him calories/amino acids etc. So if Martin isn't up to eat for longer, than yes, I'd say try parenteral nutrition is a must. But again, I'm no doctor and you would need a doctor to prescribe this.

I think you are in touch with a doctor, so s/he will take care of this. What is going on in this young man's guts? I hope the lab tests will show soon.

but before we drive him to hospital, I would carry all these things from hospital to martin on my own.
This brought some water to my eyes... thank you for being such a great friend!