feel sick can't get a diagnosis

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A sister in the struggle
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Date Joined Jun 2012
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   Posted 6/8/2012 3:02 PM (GMT -6)   
I have been doing an extensive natural program for a couple of years. I think that my tests are coming back at low levels because of this. However, I still feel sick and fight the symptoms daily. I am very sun sensitive and am living a mushroom lifestyle avoiding sun and flourescent lights. I live in Arizona so it is a challenge. Wearing only spf clothing. I can feel the lupus has attacked my heart and lungs, also frequent gut inflammation. I am losing my ability to think. The celery helps a lot with brain inflammation. I eat very little things that are inflammatory so I now am about 15 lbs underweight. Can't seem to get any help from doctors. I am still working barely. I have to work in the flourescent lights but my office is lit with led lights so at least there I am safe. No UV radiation from them. I come home only half sick each day due to some bad UV exposure which I can't seem to avoid. Anyone got any input on what has been helpful to them? This is my first time posting. A sister in the struggle

couchtater
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Date Joined Jul 2009
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   Posted 6/8/2012 5:18 PM (GMT -6)   
You need to get you some strong broad spectrum sunscreen, too. Also a sun hat. I found mine at coolibar.com. I also have a solar head wrap I use on high UV ray days.

Where is you unavoidable sun exposure coming from?

Why are you scared of taking plaquenil? It's the mildest of the DMARDs and helps a great deal for some people. I know natural is the safe drug free way if it works, but it sounds like you're risking lowering your immunity by losing so much weight. That's not healthy.
Joy

A sister in the struggle
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Date Joined Jun 2012
Total Posts : 10
   Posted 6/8/2012 7:27 PM (GMT -6)   
The UV exposure comes from Flourescent lights at work. My office is with LED lights but I have to run around in the bad lighting when my job requires that I go out to other areas to get things. I am a nurse and I have to go get charts or patients.
The doctor won't give me plaquinel because he does not believe I am sick enough to require medication. Bottom line, I battle the fatique, burning in my heart, chest shortness of breath, burning in my gut, and depression to different degrees daily. I tell him this and he does not listen or think that anything is wrong with me. I don't dare eat anything to gain weight because it makes me feel sick. Example I can't eat gluten, corn, rice sugar products, soy or legumes or dairy. Consumption of these makes me feel very depressed, exhausted and can't sleep. Joy I wanted to say that I am so glad that you answered my posting. I feel so alone with this. It moves me to tears. Andrea

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 6/8/2012 7:47 PM (GMT -6)   
It sounds like you suffer from celiac disease if your stomach does all of that.
Honey, find you a new doctor! This one sounds like a dud. Do you go to a rhuemy or is this your PCP taking care of you? You need a rheumy who will listen to you and run the proper tests for you.
I have a lupus friend who suffers from celiac too and you sound so much like her. You can also try a gastroentrologist to help you out with the testing for celiac.

We're here for you. Sometimes the weekends are a little slow here, but I'm here 5 or 6 times everyday. Just holler and we're here to listen.

Lupus is a mystery of a disease. You never know what or when it will hit you with. Mine loves to hit my knuckles and toes a lot, with my back as an after thought.
Joy

A sister in the struggle
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Date Joined Jun 2012
Total Posts : 10
   Posted 6/8/2012 8:03 PM (GMT -6)   
I was tested and told that the problems that I have with different foods has to do with food allergies. I might have celiac, i don't know. I just know that if I eat that stuff, I get depressed, exhausted and inflamed. Currently, I eat a little fruit,or sweet potato just to have enough carbs to not loose more weight. These will also make me sick so I eat them with a lot of greens to counter their bad effect.
My rheumy is clearly completely inadequate. Where I live it takes three to four months wait to get an appointment if you are a new patient. So far I have seen three. The first was an arrogant bully. The second was a raving maniac. The third was completely worthless. This is one of the big reasons I have been trying to do it on my own. So far they have been no help.
You have no idea how nice it is to talk to someone about all of this. God bless you Joy!

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 6/8/2012 8:58 PM (GMT -6)   
 
Here's a website that talks about safe and unsafe foods for celiac disease. See if these are on your no-no list.
 
Maybe this will help?
Joy

A sister in the struggle
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/8/2012 11:16 PM (GMT -6)   
I read up on celiac disease. I have many symptoms that could be celiac disease. However, I think that I have other symptoms that are not on the list for celiac. I may have both lupus and celiac. What I know is that I tested positive, at the moderate level for an allergy test for gluten. Egg. soy and dairy were also positive.

I have a genetic family tendency towards autoimmune diseases. So I can't say for sure that it is lupus. In my family we have MS, Chron's disease, diabetes 1 and 2. Addisons, Lupus, Rhematoid Arthritis,shogrens disease and at least three more, I don't know what they are called. I know that my fingers are all ways cold,,,Raynauds? I was told that I have possibly antiphopholipid syndrome... no clots thrown yet. I also have anti cardiolipin syndrone but it is not very severe now I was told. I also have had positive ANA tests, the last one was negative. I also had six different labs which were abnormal and one of the possible reasons for that was lupus in each case.
What I know is that as long as I stay out of the UV radiation, eat foods that are not inflamatory, avoid stress? and not expose myself to germs, I usually do fairly well. I just can't make it go away entirely and occaisionally it can get pretty bad. Thanks for caring and listening. I hope you have found some things that work for you.

By the way I am trying something unusual. It is called a Rife Machine. It utilizes audio and radio frequencies and is supposed to cure lupus. It has been three months now and I have been feeling better, but I think that it might be due to staying out of the UV radiation. I will need more time to see if it really helps me. I will let you know. Andrea

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2012 1:50 PM (GMT -6)   
Autoimmune issues run in my family too. My mom has MDS (Myodisplastic Syndrome).

The only way I see audio and radio frequency waves helping is maybe soothing the inflamations in the joints. When I was having PT for planters facititis they used ultrasonic massages on my foot. It helped relieve the pains a lot.
Joy

A sister in the struggle
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/9/2012 4:51 PM (GMT -6)   
The rife machine is alternative medicine. It was based on the work of Nickolas Tesla. It is supposed to cure cancer and lupus. It is a long shot but I am giving it a try. I know of at least two people who say that it helped them with their cancers. My partner has lung cancer and we are using it on him also. I own the machine so we can use it anytime(1500 dollars is what it cost). We won't know if it helps Joe my partner because he is also undergoing chemo, so we won't know exactly what helps him. Time will tell. Andrea
By the way Joe had planters facititis, he used some hard shoe inserts that he created by himself, that helped him a lot. Take Care Andrea

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2012 9:07 PM (GMT -6)   
 
I found an informational page about the foods containing Luteolin from USDA. It had several foods listed and marked which ones are the best sources of the Luteolin.
 
Parsley has the highest amount then celery hearts are next.
Joy

A sister in the struggle
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/9/2012 9:20 PM (GMT -6)   
I have been eating the parsley and celery like crazy. I am telling you I feel better. Also Arugula also makes me feel good. By the way I am a psych nurse. sometimes I wish I could recommend psych patients to try this stuff but you know I am not in a position to advise them to do anything natural. I work with a psychiatrist who is in the pill business. Note I work in a prison where the inmates don't have access to regular food choices anyway. Take care and I appreciate your responses. Andrea
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