They found something growing in the lungs

[Rufous McKinney]

I’ve been doing earthing in the form of sitting outside with my feet on the cement by my mobile home, aiming for an hour a day, for about 6 weeks.

Were you also outside near trees and vegetation? That may be adding benefits..Forest Bathing...

 

[Hip]

Absolutely fascinating. I was reading the vitamin D receptors on his site. Quite a great read. Do you think I should try this while on Prednisone right now ?

The MP is unfortunately not a quick treatment; it one or two years for benefits to appear, and you may feel worse before feeling better. So you might like to read about it, and decide whether you think it's worth trying.

I believe in the MP they try to ween you off corticosteroids, but you may want to check.

In case you find it useful, I've posted quite a bit about the Marshall Protocol in the posts: here, here, here, here and here.

Marshall Protocol websites:
https://mpkb.org/home/mp — Information website
https://www.marshallprotocol.com — MP forum; you can join this forum, and they will give you guidance on doing the MP and long-term support.


But the MP is not without its controversies. Some people think it is a con, whereas others think it is effective.

 

[Mary]

Thank you so much for that. I never really realized maybe it's not helping at all. God I'm so addicted to my phone and wifi it's probably just adding on inflmmation . So I should out my phone in my house take a book and read on the concrete in my backyard for half an hour each day ??

I can't say you should do that, but I think it's certainly worth a try. That's what I do, just read. And I check my phone from time to time too Maybe it would be better to leave the phone inside . . . The important thing is to have your bare feet in contact with the ground or cement. I aim for an hour a day, my sister got results with half an hour. I'd like to see her do it regularly, daily, and then see if she's able to cut down her meds. But she does have trouble finding the time to do it, she works full-time and is very busy with a lot of stuff. But she is intrigued by it.

I'm also curious to see if long-term it helps my ME/CFS symptoms (besides sleep). Brain inflammation is supposed to be a part of it, so if this cut down on brain inflammation, it might help other symptoms. But so far all it's doing is helping with sleep, but that's worth it to me!

And, I find it soothing. I'm getting outside more, which I like, and perhaps the grounding itself is soothing.

In a month or two it will be too cold to sit with my feet on the bare cement for an hour or so, so I'm trying to find something I can use indoors. I'll report on how it goes with the wrist band experiment!

 

[Mary]

Were you also outside near trees and vegetation? That may be adding benefits..Forest Bathing...

No, no Forest Bathing where I live! I have a rosemary bush in front of my mobile home and a tree. And the rest is rock and cement. But it's still soothing --

 

[Zebra]

Hi, HABS93,

I am going to post a link here from the Foundation for Sarcoidosis Research, which describes the latest "miracle cures" -- their words not mine -- and cautions against them. Please see link below.

Also on this website I saw that Mount Sinai Hospital, Toronto, meets the qualifications as a
"WASOG Sarcoidosis Center of Excellence." I wondered if that is where you are being treated. If not, you might consider going there for a second opinion if you are unhappy with your current treatment plan.

I need to take a break from Phoenix Rising for a while. Just wanted to share my findings with you before I go, because I care about what happens to you.

I do hope you'll check out the links below, before making any decisions.

Please take good care, HAB! I wish you improved health and happier days to come.

https://www.stopsarcoidosis.org/beware-miracle-cures/

https://www.stopsarcoidosis.org/sarc-id/sarcoidosis-clinics/

 

[HABS93]

The MP is unfortunately not a quick treatment; it one or two years for benefits to appear, and you may feel worse before feeling better. So you might like to read about it, and decide whether you think it's worth trying.

I believe in the MP they try to ween you off corticosteroids, but you may want to check.

In case you find it useful, I've posted quite a bit about the Marshall Protocol in the posts: here, here, here, here and here.

Marshall Protocol websites:
https://mpkb.org/home/mp — Information website
https://www.marshallprotocol.com — MP forum; you can join this forum, and they will give you guidance on doing the MP and long-term support.


But the MP is not without its controversies. Some people think it is a con, whereas others think it is effective.

I definitely see the controversies with it. Hip you are a smart individual with this stuff. What do you think I should do ? I can't tell what's worth trying or just a con. I just don't know anymore.

 

[Hip]

I definitely see the controversies with it. Hip you are a smart individual with this stuff. What do you think I should do ? I can't tell what's worth trying or just a con. I just don't know anymore.

I would not class it as a con, I think Trevor Marshall genuinely wants to help people, and is not making any money from his Marshall Protocol. However, whether it is effective or not is the real question. I don't think there is enough information available to answer that question accurately, but my feeling is that the MP (like many treatments) has probably helped some people but not others.

I guess it also depends on how your illness pans out. This is what the NHS website says:

For many people with sarcoidosis, symptoms often improve without treatment within a few months or years. For these people, the symptoms aren't usually severe.

However, a few people find their symptoms develop gradually and get worse over time, to the point where they become severely affected. This is known as chronic sarcoidosis.

There is currently no cure but symptoms can usually be managed with medication.

So if you started improving over time, then it may become less of an issue. But if your symptoms are getting worse over time, perhaps the MP is something to keep in mind.

 

[uglevod]

Please take good care, HAB! I wish you improved health and happier days to come.

https://www.stopsarcoidosis.org/beware-miracle-cures/

Actually their logic makes no sense to me: IMO, its they, who are offering miracle "cure" because first prednisolone never cures from any chronic disease and there is no miracle in heading towards lung transportation with a guaranteed time to life of around 4 years(it would be really a miracle cure to happen on their standard set of actions).

The worst thing with MP, is you already have a CFS, say around 3..4/10, MP will spike it to continuous 8/10 (1..2 hours of mild activity/day) and the spike can become constant with no relatively good days, plus a huge photosensitivity will sets in.

 

[Marylib]

Just catching up on this thread, HABS93, and I am feeling so much for you! My step mother has dealt with rheumatoid arthritis for decades now and she is one of the strongest people I know. She has been on all kinds of meds and then off them again. She has a good doc living nearby now and she has recently gone of her prednisone. (Previously she has been on Humira, methotrexate -the usual stuff for that disease.) She says that going off the prednisone was very hard because she plummeted into a depression. She is doing better now - she knew she just had to live through it and she loves life. She lost her husband, my father, nearly two years ago, so she has really been through hell dealing with life without him - along with all this other crap.

She always has to be checked for lymphomas and all that because of her time on immune suppressant drugs. But she is going strong. I hope you can find a way to relax, whether it's cannabis edibles, or transdermal cannabis - or just whatever you love. Like music or something. A plant or a pet is good for some people. Sigh..I wish I could fix it for you. Yeah, cats are pretty chill creatures to have around when you are not feeling well. I think of cats as role models LOL. I don't have one at the moment, but they can be pretty straight-up creatures to have around.

Maybe it helps to remember that what you are going through is not YOU, it is something your body is trying to do to keep on living. Someone taught me this thing where you close your left nostril, inhale through the right nostril then move your finger and exhale through the left. I know it sounds lame, but I find it really helps me sometimes. Yeah, it's probably lame, but it's the best I got at the moment.

Thinking of you! Hope to hear soon how you are getting along.

 

[Tammy]

This is what Anthony William says about Sarcoidosis. (he is not a Dr. or a scientist.......just an ordinary human being with an extraordinary gift).

"Some varieties of EBV are less concentrated on the central nervous system and instead make their focus the lymphatic system and organs. In these cases, as the virus advances to later phases and stages, many virus cells also stay behind to attack and inflame lymph nodes around the lungs, heart, liver, and neck, creating swelling and scar tissue throughout the lymphatic system and in and around the organs."

 

[HABS93]

I would not class it as a con, I think Trevor Marshall genuinely wants to help people, and is not making any money from his Marshall Protocol. However, whether it is effective or not is the real question. I don't think there is enough information available to answer that question accurately, but my feeling is that the MP (like many treatments) has probably helped some people but not others.

I guess it also depends on how your illness pans out. This is what the NHS website says:


So if you started improving over time, then it may become less of an issue. But if your symptoms are getting worse over time, perhaps the MP is something to keep in mind.

All a waiting game thank you hip your opinion I value it greatly. It's difficult to judge because those flares up making me bedridden sound worse. But I feel as if it has to get worse before it gets better. Surprisingly my heart has calmed down Abit. I get palpitations all the time. The weed edibles kind of help very minimal as it doesn't relax me . Don't know if this is because CFS like symptom's from sarcoidosis . It almost feels like the body doesn't have the energy to give you a high which requires alot of energy to use.
I got EI so I can live some more months without working. Going to check eyes next week for sarcoidosis. Still haven't felt any change of any sort from the Prednisone just hanging in there with dear life.

 

[HABS93]

Just catching up on this thread, HABS93, and I am feeling so much for you! My step mother has dealt with rheumatoid arthritis for decades now and she is one of the strongest people I know. She has been on all kinds of meds and then off them again. She has a good doc living nearby now and she has recently gone of her prednisone. (Previously she has been on Humira, methotrexate -the usual stuff for that disease.) She says that going off the prednisone was very hard because she plummeted into a depression. She is doing better now - she knew she just had to live through it and she loves life. She lost her husband, my father, nearly two years ago, so she has really been through hell dealing with life without him - along with all this other crap.

She always has to be checked for lymphomas and all that because of her time on immune suppressant drugs. But she is going strong. I hope you can find a way to relax, whether it's cannabis edibles, or transdermal cannabis - or just whatever you love. Like music or something. A plant or a pet is good for some people. Sigh..I wish I could fix it for you. Yeah, cats are pretty chill creatures to have around when you are not feeling well. I think of cats as role models LOL. I don't have one at the moment, but they can be pretty straight-up creatures to have around.

Maybe it helps to remember that what you are going through is not YOU, it is something your body is trying to do to keep on living. Someone taught me this thing where you close your left nostril, inhale through the right nostril then move your finger and exhale through the left. I know it sounds lame, but I find it really helps me sometimes. Yeah, it's probably lame, but it's the best I got at the moment.

Thinking of you! Hope to hear soon how you are getting along.

All my prays and thoughts that's extremely difficult situation to go through. She must have the strongest personality to live through that all. Maybe one day she will find peace from within.
That's interesting view to look at it is. This isn't who I am it might of been a long time since I've been myself but I haven't forgotten who I am. One day this will die. Nothing last forever . I've tried mediating but its not who I am. I like to go for runs to feel the endorphins that was always my relaxing way . Sometimes use to go on 4 hour walks with a coffee and music. I could just tune out. The legs I built in my hockey years to endure such long periods of time. Now I struggle with a half hour walk. Thank you for your opinion it means alot to me .

 

[Marylib]

All my prays and thoughts that's extremely difficult situation to go through. She must have the strongest personality to live through that all. Maybe one day she will find peace from within.
That's interesting view to look at it is. This isn't who I am it might of been a long time since I've been myself but I haven't forgotten who I am. One day this will die. Nothing last forever . I've tried mediating but its not who I am. I like to go for runs to feel the endorphins that was always my relaxing way . Sometimes use to go on 4 hour walks with a coffee and music. I could just tune out. The legs I built in my hockey years to endure such long periods of time. Now I struggle with a half hour walk. Thank you for your opinion it means alot to me .

You are an inspiration to all of us. It takes a strong man to deal with what you have on your plate. I used to be the athletic type myself - and when I can do it, I always try to relax by taking long walks. Nothing can beat those endorphins. When I had to give up running, I cried like a baby. And got really pissed off about it.

 

[Mary]

Surprisingly my heart has calmed down Abit. I get palpitations all the time.

@HABS93 - prednisone can cause increased potassium excretion (https://www.drugs.com/tips/prednisone-patient-tipshttps://www.drugs.com/tips/prednisone-patient-tips)

So the prednisone may be causing your potassium levels to drop, and palpitations are a very common symptom of low potassium. It's happened to many people here. A simple and easy way to see if potassium can help your palpitations is to drink several glasses of low-sodium V8 or other low-sodium vegetable juice, which are high in potassium. Just recently someone here had the same symptoms of palpitations and they drank I think 2 or 3 glasses of either tomato juice or low-sodium V8 and within a few hours were noticeably better.

Also low potassium can make you very tired. I've experienced this. It's an awful feeling.

And if your potassium is low, I don't think one or two bananas would give you enough potassium to see if this is the problem.

Also, fwiw, persons with ME/CFS can have low intracellular potassium despite normal blood levels. (see https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-291422) I know you don't know if all your symptoms have been due to sarcoidosis or if you might have ME/CFS as well, but I'm just pointing this out in case your blood work may show up normal for potassium, but it doesn't necessarily mean that your cellular levels are okay.

Anyways, if the low-sodium V8 or equivalent helps you, then you might consider taking a potassium supplement with your prednisone. Obviously you can talk to your doctor about this.

Take care --

 

[Mary]

@HABS93, I'm tagging you again here because the tag in the above post didn't work - I don't have a clue why not!

 

[Judee]

I agree with you @Mary but because he is still young I don't know if he would need to restrict the sodium. Regular V8 might be okay as well. I've found that sodium intake can help with energy too so might be helpful for him also. I guess he would need to experiment but I was happy to see you suggest this about the potassium.

 

[Mary]

I agree with you @Mary but because he is still young I don't know if he would need to restrict the sodium. Regular V8 might be okay as well. I've found that sodium intake can help with energy too so might be helpful for him also. I guess he would need to experiment but I was happy to see you suggest this about the potassium.

@Judee - I should have been more clear. The reason I was suggesting low-sodium V8 or vegetable juice is because it's higher in potassium (900 mg. per 8 ounce glass) than regular V8 (500 or 600 mg a glass). I wasn't suggesting he restrict sodium per se. So the regular V8 or vegetable juice would work - it would just take more to be effective.

 

[Mary]

The tag didn't work again! Tagging you again here @Judee -

 

[YippeeKi YOW !!]

@Marylib

Someone taught me this thing where you close your left nostril, inhale through the right nostril then move your finger and exhale through the left. I know it sounds lame, but I find it really helps me sometimes. Yeah, it's probably lame, but it's the best I got at the moment.

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 !!!

 

[HABS93]

@HABS93 - prednisone can cause increased potassium excretion (https://www.drugs.com/tips/prednisone-patient-tipshttps://www.drugs.com/tips/prednisone-patient-tips)

So the prednisone may be causing your potassium levels to drop, and palpitations are a very common symptom of low potassium. It's happened to many people here. A simple and easy way to see if potassium can help your palpitations is to drink several glasses of low-sodium V8 or other low-sodium vegetable juice, which are high in potassium. Just recently someone here had the same symptoms of palpitations and they drank I think 2 or 3 glasses of either tomato juice or low-sodium V8 and within a few hours were noticeably better.

Also low potassium can make you very tired. I've experienced this. It's an awful feeling.

And if your potassium is low, I don't think one or two bananas would give you enough potassium to see if this is the problem.

Also, fwiw, persons with ME/CFS can have low intracellular potassium despite normal blood levels. (see https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-291422) I know you don't know if all your symptoms have been due to sarcoidosis or if you might have ME/CFS as well, but I'm just pointing this out in case your blood work may show up normal for potassium, but it doesn't necessarily mean that your cellular levels are okay.

Anyways, if the low-sodium V8 or equivalent helps you, then you might consider taking a potassium supplement with your prednisone. Obviously you can talk to your doctor about this.

Take care --

Sorry for the late response thanskgiving here didn't go on the phone alot
Hmmm so blood test won't give an accurate potassium levels? My doctor just said it's premature beats and shouldnt be worried but it's not just that. Its a hard beat and causes discomfort when trying to relax. I'll start buying the low sodium V8 drinks this week then!
The amount of research I've done on sarcoidosis and my symptom's actually happen to 50-80% or victims. The chronic inflammation from the granulomas cause systemic problems to multiple organs. Until the immune system calms down and starts to heal and lower the inflammation the body should.jumo start into recovering. However neurostimulants to help with fatigue in situations like this have shown promising results I've also found out. Ex modafinil. So I'm going to have to see options soon.