Sarcoidosis

[Guest guest]

This is my first post, so it will be an introduction too. I guess if

one accesses my personal profile, you can find out about me in a

nutshell. I am glad to meet all of you and I thoroughly look forward

to reading previous messages from this group. I've had an interest

in alternative healing and information for years, but I also enjoy

growing my own herbs, I prepare my own echinacea and such things for

my own use. I don't necessarily take the preparations unless I need

them and I haven't really needed them, until now. I've been healthy

up until the past 2 years.

 

I'm 50 and have " thought " I've been going thru menopause or that my

issues of the past few years have been attributed to the change.

However, in the last 4 months, things have started to change. But

back to the beginning...

 

2 years ago I developed a terrible cough that remained consistently

terrible for a full year. It was a dry cough. It seems salt

irritate it, even now. I went to the doctors a few times. They put

me on some pill for coughs that had no affect whatsoever. I was also

sent to a pulminary doctor and did the whole breathing-tube thing and

they put me on Advair. I threw it away after a month as it was

having no affect whatsoever. At that point, I just decided to suck

it up and hope for the best. The cough actually got a little better

to the point it didn't wear me out anymore, but I still have it.

 

Then about 4 months ago, other things started happening. For one

thing, I started detecting a muscle fatigue and breathlessness. Just

climbing the stairs makes me run out of breath, but not drastically

so. I simply can feel the physical stress to my lungs. This muscle

fatigue is still with me today. Then, I started developing thirst,

puffy, swollen and bloodshot eyes that become blurry and run

constantly, overall fatigue, and a feeling that the bottom of my feet

are swollen.

 

To top this off, about a month ago, I noticed my face getting " fat. "

This has been rather comical to some extent as I kept wondering why

my glasses seemed to be looking so small on me all of a sudden. I

have been wondering why all my weight has been " going to face " all of

a sudden. Well, duh, finally a few weeks ago, I actually touched my

face and realized that the sides of my face were swollen and rock

hard. Not only that, but the glands in my neck were swollen too. I

happened to be in Chicago at the time and couldn't do much about it

but get on the internet and start trying to connect the dots, as the

doctors don't seem to be able to do this well.

 

Anyhow, I came up with a diagnosis of Sarcoidosis. I then went to

the VA hospital upon returning home (yes, I'm a Vet), and went to the

emergency room which happens to be run by a friend of my partner

(Peter). I didn't mention sarcoidosis to her; I wanted to see what

she came up with. After viewing chest x-rays and seeing swollen

glands there too, and coupled with the other info, she also came up

with that diagnosis. However, we are now awaiting blood tests

results. Sinuses are clear and mono has been ruled out.

 

The ENT doctor at the VA wouldn't see me until I went through a

course of antibiotics. I am supplementing that with Lacto-S-Plus,

because at this point, that's all I know to do to counteraffect the

antibiotic affects. I've got to admit that only after 2 days, I'm

already feeling better; at least better than I have been in a long

time. The swelling has diminished just a bit, but mostly the overall

fatigue has lessened and the eye situation has improved greatly. The

muscle fatigue and breathlessness and coughing is still about the

same.

 

I had to have my thyroid out in 1995; well, I probably didn't HAVE to

have it out...now I find out they could had avoided that with some

intelligent thought, but you know how that is! So, I'm on 0.2 mg of

synthroid. I WAS taking 10 mg of Zyrtec because I thought I had bad

allergies, but now I'm thinking NOT. My periods are very irregular,

which I attribute to the change, but I don't even know about that

anymore either!

 

I drink lots of water; no sodas or juices or milk. I do drink some

unsweet tea, green tea and about 2 cups of coffee in the morning. I

grind organic beans. I use filtered water. I buy organic if I can,

but finances don't allow that too much anymore, but IF I can, I do.

Yes, we do eat some unbleached, unbromated flour products that I make

myself, but I'm starting to learn to bake with spelt flour. Yes, I

do eat some dark chocolate. I have pretty much given up the red wine

because I just don't feel up to drinking it anymore. I try to eat

lots of greens, chicken, cold water fish (I'm a big sushi eater and

my cholesterol had dropped 50 points), but of course there's the

mercury scare so now I limit that somewhat. I can't afford excessive

expensive supplements right now. But I will afford the absolute most

necessary for this recent condition.

 

My son has IBS and acid reflus really bad, and I ordered hugely

expensive aloe vera capsules for him, but I wonder if a less

expensive type would had done the same thing? So, I want to get some

guidance and good sense before I go off on a tangent of expensive

remedies.

 

Fibromyalgia is prevelent on my mom's side. High BP on that side

too. No cancer in the family. Heart on my dad's side, although he

overcame his condition and has made it to age 78, though he's slowing

down now.

 

Thanks to Lynques for sending me here! That is it. This was really

long but I tried to be as detailed as possible and get it all out

there at once!!! I hope no one is sleeping by now or that your eyes

are glazing over.

 

I should mention that I lost my husband to a disease called primary

systemic amyloidosis. It was a horrible, horrible, horrible disease

and death (is any death not horrible though?), so when " sarcoidosis "

came up, I kind of freaked. It's not that I freaked for myself, but

for my two kids. But I'm VERY optimistic and I don't plan on going

downhill; only uphill!!! Which is why I'm here. The doctors so

botched up my late husband's treatment and disease, that I don't

trust them one bit.

 

Anyhow, that's it. Thanks for listening. Should I apologize for

this being so long, or is a first post normally long? LOL. Bye.

 

Mary Ellen