Need guidance

[HABS93]

Usually I post threads about my experiences and what I've tried. Supplements , mediation..etc. However I'm making this post because I don't really know what direction to go in. Confirmed sarcoidosis in September. Did Prednisone until two weeks ago. I managed to titrate down to 5mg then tapered it off.

I've talked to countless Marshall protocol forums with people. I've read prob 50 responses on Reddit of people trying it. I'm 50/50 but most likely trry it in April.

Eye appointment is coming up for my eye symptom's ( Can't focus at all, alot of floaters, also seeing these dogs constantly moving. It's hard to describe I think it's PPPD? )

Brain fog and this is truly the biggest one because it feels connected to this cotton wool feeling right above my eyes behind my for head. I actually am making mistakes not because I'm not intelligent but because I can't use my brain properly ?

Lightheadedness- Pre sickness. 2017 I had random episodes of vertigo . I went to a hospital and the doctor looked at my ear and said it's dirty or something like that causing vertigo. Gave me something to take that will help and I didn't want to pay for it so I never did it ( Stupid I know ). Does this have anything to do with why I'm feeling this way ? I've found similar symptom's . The key words were "Swaying feeling * The more I exercise the worst it gets. Never got car sick until this symptom came as well.


Neck pain- Chronic neck pain in the rhomboid muscle behind the neck. Burning sensation. Been like this for three years. Never had a back massage. I stretched before I excercise that's it. Can this caused the balance problems ?

Sarcoidosis usually causes fatigue in 50% of people. This makes sense why I have this. However it seems like I have a concuction of problems all combines. I'm surprised I could write this out . I need help sorting through this because my doctor isn't that great at all

 

[Wishful]

I've had lots of floaters all my life. The constantly moving dots and squiggles are very annoying. I don't know of anything that can be done about them. I'm waiting for nanotech submarines to be invented for clearing them out.

If the sarcoidosis is releasing cytokines, it's probably activating glial cells too, which cause neurological symptoms. Did the prednisone have any effect on the symptoms?

 

[HABS93]

@Wishful Wouldn't be so bad if that was your only symptom definitely annoying though. I thought he had something to do with inflmmation in the eye? Haha that would be the day. Although probably not far from technology like that.

Activating glial cells? Fascinating I've read some articles about the cyctokines. They might be why I also don't feel any emotions since getting sick. They cross the BBB and disrupt signals.of neurotransmitters.
The prednisone had no effects really at all. It had efffects on my heart palpitations and racing heart from just climbing stairs. Definitely messed my sleep up. I used cannabis to fall asleep. The cannabis made my numerological symptom's worse. Even caused really dark thoughts. Since coming off of it I haven't really felt much difference except my fatigue is alot worse but I'm sleeping 12 hours now.

 

[Wishful]

Floaters are just dead cells that break loose from the retina and float around. I don't think the immune system has any effect on that. I have a stretched retina, so that makes floaters more likely.

I think that many of the symptoms we feel from viral infections arise from glial cells activated by cytokines released elsewhere in the body. The activated glial cells function differently, affecting brain function, and release more kynurenines of the neurotoxic variety, which make us feel lousy. Tryptophan (which activated glial cells convert into kynurenines) made me feel strongly suicidal. One of the kynurenines--quinolinic acid--is known to cause suicidal moods. Supplemental niacin also caused my suicidal moods, I think because without supplemental niacin, my cells were converting excess QUIN into niacin. If you have some niacin on hand (or multivitamins), see if it affects how you feel. Avoiding tryptophan and niacin really helped me.

 

[Wolfcub]

Lightheadedness- Pre sickness. 2017 I had random episodes of vertigo . I went to a hospital and the doctor looked at my ear and said it's dirty or something like that causing vertigo. Gave me something to take that will help and I didn't want to pay for it so I never did it ( Stupid I know )

Is there any chance you can get that same prescription again? It would be worth paying to see if it helped you, even all this time down the line.

 

[HABS93]

@Wolfcub My symptom's for sarcoidosis were very strange. I had out if breath really easily but not coughing at all. I actually haven't really been able to tackle a bunch of things I'm still testing certain things. My nodes hurt in the beginning but not until they were enlargened. I hope you don't have it though !

I forget what it was called. I remember the doctor at the hospital have it to me and I went back to work. Which I worked nightshift 12, hours in a rubber factory as a machine operator. I need to get my ears checked .

@Wishful Ahh I did not know that. Prednisone had no affect on this in the brain what so ever. Even though it's caused the surpressed immune system to stop the granulomas from expanding and causing organ failure. I don't see how to recover through these cytokines and there cause and effect. In the first month of symptoms starting I actually though I could just take a multi vitamin and run . The niacin made me Shakey. I took multi vitamin that didn't have any and I didn't gettjat feeling. So I try to avoid niacin or cq10 which caused my nuerological symptot to get even worse

 

[Judee]

Have you tried chiropractic? I have some form of orthostatic intolerance (feel faint and antsy while standing) but don't experience the dizziness like some people do unless my neck, especially c-1 and c-2, is subligated. Then it's horrible and very dangerous. For days on end, the room feels like the floor is tilted at 30* and I grab for walls as I walk. Plus, I experience dizziness even while lying down. It only comes on when the subligation is really bad and I have been avoiding going to the chiropractor and then usually one or two treatments and it's gone and gone for a very long time.

Floaters - I got this last year where I could see something in my right eye - it was like a 2 inch strand of my hair, which is curly-frizzy, was hanging down in front of my eye but no hair was there. The eye doctor said this is normal with age and that I probably would have it the rest of my life.

About that time a rheumatologist tested me for vitamin D deficiency. I was low. I started taking about 25K two times a week with a good k2 supplement and low and behold the floater went completely away and has not returned since. (I know--opposite from the Marshall Protocol from what I understand.)

Anyway, everyone is different but I absolutely love chiropractic. My mom has severe back pain and he and the DO are the only ones who have ever been able to get her out of it.

A surgeon she has prescribed physical therapy recently for her following a hospital visit in January, just to get her stronger, not for any pain issues but many of the exercises the PT prescribed actually put my mom into much worse pain. Right now we're trying to get back to the chiropractor so he can undo the damage.

(Sorry PT people. It's just that we've always had ten times the success with chiropractic that we have with PT although I did have an excellent PT person but that was because she was very good at massage and didn't prescribe a lot of exercises the made things worse. I'm also not saying that exercise will always make things worse so please don't get upset by my opinions generated by my own personal experiences. Like I said, everyone is different.)

 

[ScottTriGuy]

worked nightshift 12, hours in a rubber factory as a machine operator

hhmmm, do you know what kind of chemicals would be in a rubber factory air / environment?

If you knew that, theoretically you could try to 'flush' / chelate them out of your system.

 

[PatJ]

alot of floaters

I've had floaters for years. Also visual snow and little visual sparks (like welding sparks that leave a light trail).

I went to a hospital and the doctor looked at my ear and said it's dirty or something like that causing vertigo.

Excess earwax against the eardrum can cause problems with balance. Some people use a 50/50 mix of water and peroxide to dissolve the wax; others use olive oil; then gently rinse with water using a small squeeze bulb or syringe. It can take several days to soften wax, especially if it's impacted.

rhomboid muscle

That might be something called coat-hanger pain. I get that across the tops of my shoulders when I've over-exherted. I had it for months at a time earlier in this illness.

Sarcoidosis

Have you ever looked into alternative treatments? EarthClinic has user suggested treatments, and Ted's Remedies on EarthClinic has some interesting information about Sarcoidosis.

They might be why I also don't feel any emotions since getting sick.

My emotions aren't normal either. I've gone from periods of zero emotion to limited to decent and then back again. I also feel very little sense of reward from doing things, and little, if any, sense of anticipation. That has also fluctuated along with my health.

Hip has discussed this in several posts. Here is a post about using ozone as a treatment. Here is a post about various forms of anhedonia and blunted affect; and here is another with possible treatments.

 

[Wolfcub]

Which I worked nightshift 12, hours in a rubber factory as a machine operator. I need to get my ears checked .

It might be that the vertigo you get is related to that (?) There could be some effect on the inner ear. Maybe a visit to an ENT if it can be done on your insurance?

 

[Wolfcub]

Excess earwax against the eardrum can cause problems with balance. Some people use a 50/50 mix of water and peroxide to dissolve the wax; others use olive oil; then gently rinse with water using a small squeeze bulb or syringe. It can take several days to soften wax, especially if it's impacted.

That is so true. Earwax can make you dizzy. But keep the flushing water at body temperature. Cold water can have a dizzying effect, and it can if it's too warm also.

I got terribly dizzy from having my ears syringed at the doctor's when I was 17. A rather harsh experience with a bit of a dumb doctor. A very likeable man, but not a stellar doctor!
So when one ear got a bit blocked in 2015, I went privately for "microsuction". That removes earwax very slowly and gently. But before the appointment the practitioner asked me to put a couple of tiny drops of olive oil in my ear every day for a few days, to soften things up first.

 

[HABS93]

It might be that the vertigo you get is related to that (?) There could be some effect on the inner ear. Maybe a visit to an ENT if it can be done on your insurance?

See that's what I'm thinking too . So you ask your doctor for a referral to see a ENT? Vertigo is weird because you can have vertigo but not everything is spinning all the time. They call it swaying like a boat . The feeling of always being on the verge of being dizzy . It really ruins your mood !

 

[HABS93]

hhmmm, do you know what kind of chemicals would be in a rubber factory air / environment?

If you knew that, theoretically you could try to 'flush' / chelate them out of your system.

Formaldehyde and what they use from some sort of tree they extract the these hard chunks and throw bags of white powder then the mixer mixes it's all up at 300degrees. Had formulas for each compound tho. Then the machine I worked on received the rubber but you were using the machine to convert the rubber between two rolls at high speeds. So your face is right there with 300, degree steam of chemicals.

 

[Wolfcub]

It really ruins your mood !

Yeah...I completely get that. Yuck I think it can be scary when we are just on the edge of something. It's hard to relax and enjoy any single thing! I get similar feelings.

 

[HABS93]

I've had floaters for years. Also visual snow and little visual sparks (like welding sparks that leave a light trail).



Excess earwax against the eardrum can cause problems with balance. Some people use a 50/50 mix of water and peroxide to dissolve the wax; others use olive oil; then gently rinse with water using a small squeeze bulb or syringe. It can take several days to soften wax, especially if it's impacted.



That might be something called coat-hanger pain. I get that across the tops of my shoulders when I've over-exherted. I had it for months at a time earlier in this illness.



Have you ever looked into alternative treatments? EarthClinic has user suggested treatments, and Ted's Remedies on EarthClinic has some interesting information about Sarcoidosis.



My emotions aren't normal either. I've gone from periods of zero emotion to limited to decent and then back again. I also feel very little sense of reward from doing things, and little, if any, sense of anticipation. That has also fluctuated along with my health.

Hip has discussed this in several posts. Here is a post about using ozone as a treatment. Here is a post about various forms of anhedonia and blunted affect; and here is another with possible treatments.

I guess we are lucky floaters don't hurt . I always thought it was from doing LSD? A thing called HPPD.

Okay I did not know that. I was thinking that pain in the back of the neck was linked to maybe the brain fog and dizziness aspect but now maybe I have alot of eat wax built up. I've never drained them before . I'm going to take a try at the Marshall Protocol . Hip had a really good section too on vit D and sarcoidosis. It seems the only people who actually had success on it are most cases with sarcoidosis. Not great for just CFS/ME though.

Is the fatigue so much that we just don't have the energy to feel excitement? It's like I have to force myself to do things that I love. A special type of hell I call it. Occasionally a song will give me chills up my spine but it's extremely hard to feel it. I will look at those links though. I think I need to research this more.
Have you had any luck with anhedonia ?

 

[Wolfcub]

So your face is right there with 300, degree steam of chemicals.

Surely the company was duty-bound to provide respirators? This is a highly toxic "soup".
I wonder if there is any legal implication in hindsight?

 

[Wolfcub]

Is the fatigue so much that we just don't have the energy to feel excitement? It's like I have to force myself to do things that I love. A special type of hell I call it. Occasionally a song will give me chills up my spine but it's extremely hard to feel it.

I get the same thing and hate it. I am not naturally like this. I have found though, that there are small "spaces" when it goes away!! I grab hold of those spaces and say my prayers, and send love to my loved ones, and enjoy the music again with my Heart and Soul.
Usually by morning it has all disappeared, but there is a vague hope for a "next time".

 

[HABS93]

Have you tried chiropractic? I have some form of orthostatic intolerance (feel faint and antsy while standing) but don't experience the dizziness like some people do unless my neck, especially c-1 and c-2, is subligated. Then it's horrible and very dangerous. For days on end, the room feels like the floor is tilted at 30* and I grab for walls as I walk. Plus, I experience dizziness even while lying down. It only comes on when the subligation is really bad and I have been avoiding going to the chiropractor and then usually one or two treatments and it's gone and gone for a very long time.

Floaters - I got this last year where I could see something in my right eye - it was like a 2 inch strand of my hair, which is curly-frizzy, was hanging down in front of my eye but no hair was there. The eye doctor said this is normal with age and that I probably would have it the rest of my life.

About that time a rheumatologist tested me for vitamin D deficiency. I was low. I started taking about 25K two times a week with a good k2 supplement and low and behold the floater went completely away and has not returned since. (I know--opposite from the Marshall Protocol from what I understand.)

Anyway, everyone is different but I absolutely love chiropractic. My mom has severe back pain and he and the DO are the only ones who have ever been able to get her out of it.

A surgeon she has prescribed physical therapy recently for her following a hospital visit in January, just to get her stronger, not for any pain issues but many of the exercises the PT prescribed actually put my mom into much worse pain. Right now we're trying to get back to the chiropractor so he can undo the damage.

(Sorry PT people. It's just that we've always had ten times the success with chiropractic that we have with PT although I did have an excellent PT person but that was because she was very good at massage and didn't prescribe a lot of exercises the made things worse. I'm also not saying that exercise will always make things worse so please don't get upset by my opinions generated by my own personal experiences. Like I said, everyone is different.)

Interesting I'll have to look into this . I really should of went earlier . Life has been so busy the last couple of months I haven't had the time to sit down and come up with a game plan. I truly think light exercise like just walking but find your max and slowly increase in. But again this variable depends on how housebound or bddbound you are. This makes sense I read a article on here about using Vit D and B5 to get 100% restorative sleep . Now this worked better for people with poor sleep but it was interesting to see it's affects on how much REM sleep you got .

 

[HABS93]

Surely the company was duty-bound to provide respirators? This is a highly toxic "soup".
I wonder if there is any legal implication in hindsight?

Haha one guy wore the paper face mask once but it was not to dirty his face . People retiring for this factory all for of cancer earlier too. They have been getting looked . I hated that I found the job fun . I'd come home and have to scrub these dust out of my pores

 

[Wishful]

I forgot to mention about floaters: a sudden change can be a signal about potential problems in your eye, such as retinal detachment, so it is good to go for an eye exam for that.