They found something growing in the lungs

[HABS93]

@Marylib

Actually, not lame at all. It's an ancient Prana practice. If I'm remembering correctly (odds not great), you use your thumb to close one nostril, breath in to a count of 6, 7, or 8 (whichever is comfortable for you), hold for a count of 4, 5, or 6, then close off your other nostril with whichever finger works for you, and breathe out to a count of 6, 7, or 8, and repeat as many times as you want. The more, the better.

It's an excellent suggestion, Marylib, and it reminded me of something I should be doing, so thank you for that.

@HABS93 , I'm glad to see you hanging in and dealing, even when it's overwhelming or hard. Here with you !!!

I agree I've Been using breathing technique's to calm the heart down when I sleep . Thank you guys. All the information and support has given me hope.

 

[Mary]

Hmmm so blood test won't give an accurate potassium levels?

It's possible the blood test may not give accurate results. I think that was true in my case. For some years (I can't remember how long, much of my life with this illness is a blur!), I would get episodes of bad fatigue, lethargy, hard to describe, but it was different than PEM, it wasn't in response to exertion or anything that I could figure out. So l lived with. It usually lasted a couple of days, and then would get back to "normal" ME/CFS misery. When I started taking folate in 2010, it gave me an immediate boost in energy, followed a day or 2 later by severe fatigue - the same fatigue that had been hitting me before. It was low potassium, a form of refeeding syndrome which occurred as a result of taking the folate. My cells started dividing more rapidly and doing what they were supposed to do, which required more potassium, which induced a potassium deficiency. Thanks to Freddd's posts, I knew it was very likely my potassium would tank after starting the folate. What I didn't know was that it was the same awful symptom I'd been experiencing for quite awhile. On blood work, however, my potassium was always in the normal range. So I started taking potassium in 2010, titrated up to about 1000 mg. a day and have taken it ever since (in divided doses), and I no longer get that awful unexplained fatigue. I still get PEM of course though.

So I just wanted you to be aware that your potassium might be low, even if your blood work is fine. I just don't know. It might be fine, but I think it's certainly worth investigating given your symptoms, and the fact that prednisone can cause you to excrete potassium.

The reason I suggested low-sodium V8 is that it is higher in potassium than regular V8, so it might be more effective if you do have low potassium. In any event, it's a safe easy way to see if this might be part of your problem. But again, I would try 3 or 4 glasses - I think that would be enough to get results, if low potassium is part of the problem.

Good luck @HABS93! I hope you get some answers and relief soon, and I hope you had a nice Thanksgiving!

 

[YippeeKi YOW !!]

@HABS93 , @Mary
I whip up an early AM cocktail of cinnamon, ginger, about 600-800 mgs of potassium gluconate powder, a tiny amount of salt, a small amount of table sugar, and about 4-5 dps of stevia.

The small 1/4 teaspoon of sugar is included because an astute and thoughtful poster here, who I hope will forgive me for being unable to recall her name today, said that in studies done on helping undernourished children in Africa, they found that the sugar not only made the electrolyte drink more palatable, but it actually helped with the absorption of the electrolyte mixture.

It seems to get the day off to the best start available at that moment. Not always great, but I think always better than without it.

 

[YippeeKi YOW !!]

@HABS93 , @Mary
Because I'm a little foggy today, I forgot to mention in the above post that it was Mary who alerted me, as she has you, HABS, to the possibility that adding or increasing potassium could have beneficial effects, which indeed, it has. Not the Miracle Cure that we're all praying for, but measurable improvement on my better days, and still helpful on the not great ones.

She also advised me to start low and go slow, which I do with absolutely everything anyway, but it was a good reminder, because sometimes I could get carried away with something that seemed to have helped so many others, and I might start less low and go less slow. Sometimes that works out, sometimes it really bites me on the @ss.

Tho not in the past few years, when caution has been learned the way I seem to have to learn everything: Hard Way Road, watch out for curves.

 

[pamojja]

Hmmm so blood test won't give an accurate potassium levels?

It's possible the blood test may not give accurate results. I think that was true in my case.

All the electrolytes - sodium, calcium, potassium, magnesium.. - are tightly regulated by homostasis. Therefore before they go abnormal low and potentially create life-threatening situations, they are replenished from other tissues. Causing deficiency there, but still not showing up in serum-levels. For this reason some functional medicine practitioneers use rather optimal serum levels, instead of 'normal'. For example:

Sodium: 142-145 mmol/l optimal, versus 136-145 mmol/l normal range
Calcium: close to 2.4 vs. 2.2-2.55
Magnesium: >0,86 vs. 0.66-1.07
Potassium: 4-5 vs. 3.5-5.1

If I remember one of Fredd's posts, symptoms of potassium deficiency can develop with as high as 4.3 mmol/l in some individuals.

If you choose the supplemental route, always start low dose and increase gradually. Monitor symptoms and lab-testing to find optimal dose. But with potassium especially important, use bulk-powders only (like potassium citrate, bicarbonate, chloride..) always well mixed in a glass of water.

As tablet or capsules potassium is limited to 99mg per piece by the FDA (which usually isn't enough to raise levels), any higher dose prescription SR potassium could be dangerous, because in concentrated form it could damage the stomach wall. All adverse effects found in the literature was with high-dose prescription potassium tablets only.

 

[Mary]

But with potassium especially important, use bulk-powders only (like potassium citrate, bicarbonate, chloride..)

All adverse effects found in the literature was with high-dose prescription potassium tablets only.

I've been taking potassium gluconate 99 mg. tablets for 9 years with no adverse effects. I generally take 2 or 3 with each meal, and oftentimes I take it in the middle of the night too. I very frequently used to get muscle cramps or spasms in my calves or feet especially middle of the night before I added in the potassium. I've wondered if the "growing pains" children experience (my kids did!) were actually symptoms of low potassium! Muscle spasms and cramping in the legs --

The RDA for potassium is 4700 mg., which is the minimum, so what I'm taking is 25% of the RDA.

 

[HABS93]

I've been taking potassium gluconate 99 mg. tablets for 9 years with no adverse effects. I generally take 2 or 3 with each meal, and oftentimes I take it in the middle of the night too. I very frequently used to get muscle cramps or spasms in my calves or feet especially middle of the night before I added in the potassium. I've wondered if the "growing pains" children experience (my kids did!) were actually symptoms of low potassium! Muscle spasms and cramping in the legs --

The RDA for potassium is 4700 mg., which is the minimum, so what I'm taking is 25% of the RDA.

The V8 Juice seems to help Abit. I even didn't have that bad of a reaction to the edibles I took last night. Still can't sleep more then 6 hours because of the prednisone but the heart just has its racing heart which is most likely caused by the out if breath from the disease / medication. Although I thought of a question I should of asked earlier.
Does anyone know anything about what these chemicals are ? And ways to reduce them.

 

[YippeeKi YOW !!]

@HABS93 , @Mary

I've been taking potassium gluconate 99 mg. tablets for 9 years with no adverse effects.

I second Mary here. I've been taking potassium gluconate for almost a year now with zero bad side effects. The gluconate form is by far the gentlest, and has the added benefit of being particularly gentle on your liver, which the other forms generally aren't, as well as your stomach lining and intestines.

I use the bulk powder form, partly because in the long run it's cheaper, and also because I can titrate each dose to my immediate perceived needs.

 

[pamojja]

Does anyone know anything about what these chemicals are ? And ways to reduce them.

Selfhacked.com sieves through the literature of all bloodmarker, so you find many good references there. Though do read the references themself for the important points made to verify yourself:

https://selfhacked.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/
https://selfhacked.com/blog/interleukin-6/
https://selfhacked.com/blog/interferon-gamma-how-to-increase-decrease-high-low-levels/

 

[Mary]

The V8 Juice seems to help Abit. I even didn't have that bad of a reaction to the edibles I took last night

@HABS93 - I'm really glad to hear this! I would definitely keep it up. I don't know how much V8 you've been drinking but you might try increasing it a little to see if it helps even more.

Sorry but I don't know anything about the inflammatory chemicals referenced in your attachment. You might try doing a separate thread just for that - someone may be able to help there -

 

[Marylib]

@HABS93 , @Mary

I second Mary here. I've been taking potassium gluconate for almost a year now with zero bad side effects. The gluconate form is by far the gentlest, and has the added benefit of being articularly gentle on your liver, which the other forms generally aren't, as well as your stomach lining and intestines.

I use the bulk powder form, partly because in the long run it's cheaper, and also because I can titrate each dose to my immediate perceived needs.

I think I will stick to eating bananas for potassium. At least then I am not buying more supplements. I threw out a big box of really old supplements. But for a while I used orange juice, salt and a pinch of potassium powder thinking it would help my POTS. But it didn't ...sigh...the old cheap electrolye recipe. If your kidneys are not able to retain fluid, why bother? Oh how grouchy I am! Actually, I prefer the V-8 juice. Yummy, I can drink alot of V8 juice very happily.

 

[Marylib]

Selfhacked.com sieves through the literature of all bloodmarker, so you find many good references there. Though do read the references themself for the important points made to verify yourself:

https://selfhacked.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/
https://selfhacked.com/blog/interleukin-6/
https://selfhacked.com/blog/interferon-gamma-how-to-increase-decrease-high-low-levels/

About the orexin thing - I think that is why it is good to eat carbs before trying to sleep. Sometimes I have oatmeal and blueberries as a bedtime snack.

 

[YippeeKi YOW !!]

@Marylib

Oh how grouchy I am!

Justifiably. This is a weasely, frustrating, miserable little limpet-mine of a disease, and finding anything that reduces the baffling range of symptomatologies is hard fought and hard won. Hang in there. V-8 should be perfect !!!

 

[Marylib]

Just wondering how you are doing @HABS93 .

 

[YippeeKi YOW !!]

@HABS93 , @Marylib
That's two of us. How's it going HABS? Is anything getting better or at least not as hard? Is the potassium still working out? Can you still tolerate edibles? Is your sleep any better, or the racing heart? Have you been able to talk to you Dr about that?

Just a bottomless pit of questions here, but long silences make me nervous, doncha know. I've never found them to mean "....I just won the Lottery and have moved to Ibiza!"

 

[HABS93]

@HABS93 , @Marylib
That's two of us. How's it going HABS? Is anything getting better or at least not as hard? Is the potassium still working out? Can you still tolerate edibles? Is your sleep any better, or the racing heart? Have you been able to talk to you Dr about that?

Just a bottomless pit of questions here, but long silences make me nervous, doncha know. I've never found them to mean "....I just won the Lottery and have moved to Ibiza!"

Hey sorry it's been abit. Kind of just wanted to take alittle break from researching things. Nothing's gotten better. Actually it's gotten worse as I have tremors now , brain fog has gotten way worse , the heart has calmed down Abit but still racing . I've had to vape weed because the edibles just made the racing heart worse. Vaping isn't really going to do anything to the granulomas so . My doctor got didn't like it but what am I suppose to do? I need some sort of crutch qnd I'm pretty sure vaping thc has 0 effects on sarcoidosis . So Monday I go to see what is going on with the progression of the disease. I've lost my hope though.

 

[YippeeKi YOW !!]

So Monday I go to see what is going on with the progression of the disease. I've lost my hope though.

Don't lose your hope!!! Never lose hope .

Maybe in this case you might want to lose your Dr. Can you find another option who'll be more responsive to your qustions re your disease, the treatment protocol being used, and your needs re anxiety and racing heart reduction?

 

[Jyoti]

@HABS93 --Seriously sorry to hear that things have gotten worse! Do you have a community like this one that is dealing with sarcoidosis? Any ideas or directions to pursue from others who have it as well? I know that overload though---you read and read and try to decide what you are going to do and you do it and feel like maybe you have a shot at feeling/getting a bit better and then....nothing. Or worse. I know that need for a break from being hopeful and engaged which seems to follow disappointment.

But in all likelihood it will return--you are a fighter and you have so much life to live. Don't let your doctor off the hook! And if you feel up to it, let us know how it goes.

 

[Mary]

@HABS93 - thank you for keeping us updated! Let us know what you out find out if you're up to it - and I think @Jyoti has a great idea about a possible on-line community for sarcoidosis. It seems that patients very often have to lead their doctors! Take care --

 

[HABS93]

Don't lose your hope!!! Never lose hope .

Maybe in this case you might want to lose your Dr. Can you find another option who'll be more responsive to your qustions re your disease, the treatment protocol being used, and your needs re anxiety and racing heart reduction?

Prednisone makes you feel like you're on cocaine all the time. I actually thing I just got use to my heart always racing. I know it's just hard sometimes. Someone once said on here if they could cure their own arm off to be free they would. I've reached that point. Well I got a big week coming up and there's a sarcoidosis clinic which specializes in it so I'm going to ask to get referred there.