Now very severe HELP

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Agree with what people say - rest, rest,rest. This illness takes infinite patience, perseverance and the discipline to really listen to your body. It took me a long while to really give up trying to do more than my body could tolerate.

Also, those energy drinks like Ensure and Boost contain lots of sugar! Need to look at the ingredient list. I use a powder supplement called Vega, which is made from all kinds of veg, fruit, seaweeds, nuts and seeds. - the only sweetener is stevia.
 
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Hi @MartinDH, So sorry you are having such a rough time. I too had severe vertigo for a long time, also fainting spells. The thing that turned me around was methylB12.

Freddd taught us that brands make a difference so I stick with the Solgar brand that he recommended. I got into trouble when I ran out and used some B12 of a different brand I had on the shelf. My brain took time to heal.

May God give you the patience you need at this time. Anna
 

Gingergrrl

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If I remember correctly @Gingergrrl Fresubin is made in Germany. It's use over here in UK is pretty standard for people who, for medical reasons are unable to eat normally. It's quite costly but we get it on the NHS. There must be something that is basically the same in the US. I could well be very helpful to your mum as it contains all the nutrition ie vits/mins/fatty acids and calories that we need. Company is called Fresenius Kabi. They have a branch in US.
I finally had the opportunity to Google this product and it is $85 for just four bottles on Amazon and seems to be more of an energy drink. I could not find the actual ingredients and it looks like it ships from Europe. So I am going to continue trying to find something else that my mom might be able to tolerate but wanted to let you know again that I really appreciated the info @andyguitar
 

Gingergrrl

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I am not at home and will have to google this later to find out what it is.
I Googled this since you tagged me in case I could help and now wanted to clarify. By "anti thrombosis injections" are you asking if you should take a blood thinner like heparin or warfarin, etc? Or do you mean something totally different?
 
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I Googled this since you tagged me in case I could help and now wanted to clarify. By "anti thrombosis injections" are you asking if you should take a blood thinner like heparin or warfarin, etc?
Hello @Gingergrrl @MartinDH
yes I think Martin is asking about that. As for myself I've never taken blood thinners while bedbound and in a crash. But maybe someone else can share experience with that?
 
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Hello everybody,
I'm Michael, one of the two roommates of @MartinDH.Due to the unfortunately steady worsening of Martin's condition, I will try to be his mouthpiece in this forum. I'm still at the beginning of my CFS studies, so maybe I'll ask some questions that are already answered somewhere. I'm glad for any advice and will deal with it as soon as possible.

@Gingergrrl : yes, he speaks of blood thinners. In Germany you get these in the hospital from day one. Therefore, we are not sure if it is too dangerous if he does not take blood thinners during a stay of several weeks in bed. He did not want these anymore, because he got pain in the abdominal region.

He also complained today about a stinking / musty smell in the nose. It will probably be something in the nose or come from the stomach!?! Any suggestions what I could ask him to diagnose or what I could investigate?

A question regarding vitamin B12:
We have arranged for Martin to receive a vitamin B12 injection twice a week (5mg of pyridoxine hydrochlroid, 1mg of hydroxocobalaminHYDROCHLORIDE [same as hydroxocobalamin?], 1.1mg of sodium hydrogen folate / folic acid). So far he has gotten one. He will get the next one on Tuesday. After reading in this forum that many recommend methylB12, I got Martin drops. We have already given him 1ml/day (1000 μg (mcg) methylcobalamin) for 2 days. In the preparation are the following ingredients: water, humectants: glycerol; Methylcobalamin, acidifier: citric acid, preservative: potassium sorbate, sweetener: Stevioglycoside (from Stevia). In addition, I found out that in the "Astronaut Food" Fresubin Cyanocobalamin is included. Although only 0.75 μg (mcg) / bottle (he drinks 4-5 a day), I still have the fear that the syringe (hydroxB12), drops (methylB12) and food (cyanoB12) is too much. What do you think?
 

Gingergrrl

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Hello @Gingergrrl @MartinDH yes I think Martin is asking about that. As for myself I've never taken blood thinners while bedbound and in a crash. But maybe someone else can share experience with that?
I have never taken blood thinners and unfortunately do not know the answer to this question. I would guess if you know (or suspect) that you are a blood clot risk @MartinDH that this is worth asking your doctor about. Is the doctor helpful who suggested the Fresubin?
 

Gingergrrl

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I'm Michael, one of the two roommates of @MartinDH.Due to the unfortunately steady worsening of Martin's condition, I will try to be his mouthpiece in this forum.
Hi Michael, somehow we cross-posted and I had not seen your post when I wrote my last reply. Martin is blessed to have such a good roommate looking out for him like you.

@Gingergrrl : yes, he speaks of blood thinners. In Germany you get these in the hospital from day one. Therefore, we are not sure if it is too dangerous if he does not take blood thinners during a stay of several weeks in bed. He did not want these anymore, because he got pain in the abdominal region.
I am not sure if I am understanding this but do you mean someone would have to be hospitalized for one day in order to be assessed and prescribed a blood thinner? Or do you mean that Martin is already taking one (without being in hospital) but it is causing him abdominal pain so he wants to stop it? Can you check with his doctor on this one?

He also complained today about a stinking / musty smell in the nose. It will probably be something in the nose or come from the stomach!?! Any suggestions what I could ask him to diagnose or what I could investigate?
Is he having allergic reactions to food, meds, strong smells like the "must smell" you mentioned, or to other chemicals, paints, mold, etc? When I was the absolute most ill in mid 2015, I was having anaphylactic reactions just to smells (which are 100% gone now). But I do not know if this is relevant in his case.

A question regarding vitamin B12:
Some people do not tolerate Methyl B-12 (like me) so I take Hydroxy B-12 instead. But others tolerate it well and have significant improvements with it. I guess time will tell and I would tend to start with a lower dose (vs. higher) if given the opportunity to see how it is tolerated. There are many B-12 experts on this board (but I am not one of them).
 

pamojja

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So sorry to read about your tire situation Martin. Other than so many other here I never experienced it that bad. Except maybe many years ago in India with a spinal cord infection, which made me in-moveable due to extreme back-pain for altogether 8 months. And as other already said, even that also passed..

I finally had the opportunity to Google this product and it is $85 for just four bottles on Amazon and seems to be more of an energy drink. I could not find the actual ingredients and it looks like it ships from Europe. So I am going to continue trying to find something else that my mom might be able to tolerate but wanted to let you know again that I really appreciated the info @andyguitar
Found the ingredients list in German here: https://www.amazon.de/Fresubin-energy-DRINK

Looks really not that good. Vega mentioned by @moochie seems a much better product: https://myvega.com/products/categories/powders/nutritional-protein-powders/vega-one-shake

Guess a shake with some protein powder (pea, whey..), oils (omega-3, MCT oil..), mashed veggies and the contents of a high quality Multivitamin capsule mixed in, along with essential minerals (electrolytes powder..), would make a better substitute.

I still have the fear that the syringe (hydroxB12), drops (methylB12) and food (cyanoB12) is too much. What do you think?
The little cyanoB12 really doesn't adds anything. Think if it would have been too much, he would have felt it already.

Thanks for your caring, Michael.
 
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I am so sorry that you're felling that bad Martin.

Michael, thanks for your caring. My friends don't get CFS.

I agree with pamojja. Vega seems way better...

Still I would personally take: whey protein (should be whey to increase the glu. levels + mashed brocolli + MCT oil + Mg + Probiotics), but I am not a doctor.
 

PinkPanda

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We have arranged for Martin to receive a vitamin B12 injection twice a week (5mg of pyridoxine hydrochlroid, 1mg of hydroxocobalaminHYDROCHLORIDE [same as hydroxocobalamin?], 1.1mg of sodium hydrogen folate / folic acid).
I don't tolerate folic acid and vitamin B6/pyridoxine well. Maybe I'd try getting an injection with hydroxoB12 only.
Hydroxocobalaminhydrochloride is the same as hydroxoB12.

n addition, I found out that in the "Astronaut Food" Fresubin Cyanocobalamin is included. Although only 0.75 μg (mcg) / bottle (he drinks 4-5 a day), I still have the fear that the syringe (hydroxB12), drops (methylB12) and food (cyanoB12) is too much. What do you think?
I've had problems with having too much B12, that seems to differ individually. Maybe you'll have to see how he reacts.

The form I tolerate best is hydroxoB12. CyanoB12 can be a problem, as it contains cyanide, which needs to be detoxed by the body. Although, if it's in the food, I don't know if you have a viable alternative to that right now?
MethylB12 can be tricky and cause reactions like overmethylation symptoms. I have found that I tolerate hydroxoB12 best.
 
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I am not sure if I am understanding this but do you mean someone would have to be hospitalized for one day in order to be assessed and prescribed a blood thinner? Or do you mean that Martin is already taking one (without being in hospital) but it is causing him abdominal pain so he wants to stop it? Can you check with his doctor on this one?
The second one. He took blood thinner for 1 or 2 days (without being in hospital) and said that it causes abdominal pain. So he stopped it about 1,5 weeks ago. I only wanted to stress that most doctors in germany give you blood thinners from the first day on when you are bed-bound. Perhaps because they are feared to do something wrong, but currently we have the problem to have a doctor who is totally open minded and willing to understand CFS.

Is he having allergic reactions to food, meds, strong smells like the "must smell" you mentioned, or to other chemicals, paints, mold, etc? When I was the absolute most ill in mid 2015, I was having anaphylactic reactions just to smells (which are 100% gone now). But I do not know if this is relevant in his case.
I really don't know if there is an allergic reaction. At least he haven't told me that he thinks there is an allergic reaction. I will ask him as soon as I can talk to him again.

I don't tolerate folic acid and vitamin B6/pyridoxine well. Maybe I'd try getting an injection with hydroxoB12 only.
Hydroxocobalaminhydrochloride is the same as hydroxoB12.


I've had problems with having too much B12, that seems to differ individually. Maybe you'll have to see how he reacts.

The form I tolerate best is hydroxoB12. CyanoB12 can be a problem, as it contains cyanide, which needs to be detoxed by the body. Although, if it's in the food, I don't know if you have a viable alternative to that right now?
MethylB12 can be tricky and cause reactions like overmethylation symptoms. I have found that I tolerate hydroxoB12 best.
Tomorrow he gets the next syringe. Last time his condition improved the days after the injection until he tried to go to the bathroom and crashed.So I hope there will be the same effect in the next days. But you are right. Perhaps it is better to get hydroxoB12 only.

Until now we don't have a viable alternative to Fresubine. What do you think is the biggest problem with Fresubine? Sugar? Something missing?
Martin told me that he has problems mit lactose and fructose and he also tried to avoid gluten.

Tomorrow a friend talks to an acquainted pharmacist. In germany, doctors have hardly any lectures on metabolism in their studies. Pharmacists, on the other hand, learn more about it. So I trust them more in this case. I gave them your keywords (whey protein, MCT, omega 3, Mg,...). We must mix something on our owns very fast to get rid of Fresubin.

Currently it is very difficult for me to structure all these things, but I hope that improves in the next days and weeks. Every thread seems to give me another possibility to help Martin (e.g. Choline). Perhaps cortison/cortisol helps because his condition changes over the day.

Altogether: thank you all for your help, your hints and your time. That's an impressiv community here.
 

pamojja

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Until now we don't have a viable alternative to Fresubine. What do you think is the biggest problem with Fresubine? Sugar? Something missing?
Martin told me that he has problems mit lactose and fructose and he also tried to avoid gluten.
It's completely denaturated synthetic food. The vitamins in it are of the worst kind, one could easier get with the cheapest Multivitamin from the Supermarket. Partially not close to enough, some synthetic forms not easy to absorb or metabolize. The remaining 'fillers' are just cheap maltodextrin, milk-protein and sugar. It is really all junk and wouldn't even recommend to someone in good health.

Produkteigenschaften:

Bezeichnung:
Diätetisches Lebensmittel für besondere medizinische Zwecke (bilanzierte Diät)

Nährwertdeklaration:
Nährwerteangabenpro 100 mlBrennwert630 kJ/150 kcalFett5,8 g davon gesättigte Fettsäuren0,4 gKohlenhydrate18,8 g davon Zucker6,3 gEiweiß5,6 gSalz

Inhaltsstoffdurchschnittlicher Gehalt pro 100 mlBrennwert630 kJ (150 kcal)Eiweiß5,6 gKohlenhydrate18,8 gdavon Zucker6,3 gdavon Laktose< 0,27 gFett5,8 gdavon gesättigte Fettsäuren0,4 gdavon einfach ungesättigte Fettsäuren3,8 gdavon mehrfach ungesättigte Fettsäuren1,6 gBallaststsoffe0 gWasser78 mlOsmolarität405 mosmol / lVitamin A120 μgbeta–Carotin300 μgVitamin D32 μgVitamin B10,23 mgVitamin E3 mgVitamin B20,32 mgVitamin K116,7 μgNiacin3 mgVitamin B60,33 mgVitamin B120,6 μgPantothensäure1,2 mgBiotin7,5 μgFolsäure50 μgVitamin C15 mgCholin26,7 mgNatrium80 mgKalium135 mgChlorid100 mgCalcium135 mgMagnesium21 mgPhosphor80 mgEisen2 mgZink1,5 mgKupfer300 μgMangan0,4 mgJod30 μgFluor0,2 mgChrom10 μgMolybdän15 μgSelen10 μg
Zutaten:
- Vanille
Wasser, Maltodextrin, Milcheiweiß, Pflanzliche Öle, Zucker, Aroma, Kaliumcitrat, Natriumcitrat, Emulgatoren (Sojalecithin, E471), Natriumchlorid, Vitamin C, Säureregulator (E 330, E 530), Cholinchlorid, Eisenpyrophosphat, Kaliumchlorid, Zinksulfat, Niacin, Vitamin E, Pantothensäure, Manganchlorid, Kupfersulfat, Vitamin B6, Vitamin B2, Natriumfluorid, Vitamin B1, Beta-Carotin, Vitamin A, Folsäure, Chromchlorid, Kal
 

Sundancer

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@MichaelK , you are a wondefu friend, I'm almost crying to read how you stand up for him and help, a big wow for you!!!

I did not read all the thread so some things I write may be repeaters.

Tomorrow he gets the next syringe. Last time his condition improved the days after the injection until he tried to go to the bathroom and crashed.So I hope there will be the same effect in the next days. But you are right. Perhaps it is better to get hydroxoB12 only.
That is a good sign, but he must not try to use that little energy for the bathroom, I think there is a commode now? or something, imho he should conserve all little energy that he has to give his body a chance to get back toward a sort of balance.

I agree with the former poster about the folic acid, it is useful to see what he did take as supplements before and in what amounts.

Until now we don't have a viable alternative to Fresubine. What do you think is the biggest problem with Fresubine? Sugar? Something missing?
Martin told me that he has problems mit lactose and fructose and he also tried to avoid gluten.
so those three need to be avoided, I think there are many patients with ME who cannot handle them, same goes for cowsdairy, I would avoid that.

I would not touch fresubin with a tenfoot stick..., it is loaded with stuff that patients with ME tend to react to badly, And indeed, the vitamins added do not look to well either.
Milcheiweiß,= cowsdairy
Pflanzliche Öle, which ones? what quality?
Zucker , really better not.

If I were well and needing to care for you friend I think i would go for homemade broth, chicken and calfsbroth, probably put it through a sieve for him so that no thingies ( herbs ans such) would be in the mug ( or babybottle)
Maybe cocosyoghurt or goats yogurt, these are great to add oils, linseedoil and hempoil are good.
If his digestion can handle eggs, scrambled or boiled ( not too hard)
for carbs you may make porridge from riceflakes, the way I make that is first to boil three dried plums for a quarter of an hour, then add riceflakes, let stand for a quarter and boil. If needed put through a sieve. i think the easier way would be to dump the ingredients in boiled water in the evening and cook them in the morning until very soft.

depending on what he ate/could eat before he crashed you can add things like lentille ( the soft orange ones) or green peas ( those that are already put into halves)

further keep out all things chemical as much as possible, smells, additions in food , I remember I even reacted badly on the soap that my linen was washed in. Every chemical that comes into his body must be processed and his body is now not able to do that.

for vitamins and minerals you may want t use this one, is for children, very complete, very clean, all vitamins are in the good, easy absorbable form
https://nl.iherb.com/pr/Thorne-Research-Children-s-Basic-Nutrients-180-Veggie-Caps/18435

for kids 6 caps a day, caps are very small, but if needed can be put in a little porridge or broth. Maybe slowly build up the dose. Start with two caps, one in morning one in evening, something like that.

and magnesium, maybe some more experienced member can add a good brand, I use magnesiumbisglycinate, for me that works the best. ( look what he did use already)

take all things slow and careful and when he perks up a little, keep him horizontal or he'll crash again.

yes I know it's awful not to be able to go to the toilet, but waiting it out will definitely better his changes.

a very big hug from me for the both of you
:hug::hug::hug::hug::hug::hug::hug: