Lupus, i am your father

[Darthritic Vader]

Hi all

New to the site, 49 y.o. guy, diagnosed recently with lupus, now being told that it was what landed me in the intensive care ward for nearly 3 weeks with lung problems that were nearly fatal two years ago

also diagnosed with psoriatic and other arthritises (hence the starthritic wars nick), congestive heart failure, benign enlarged prostate, fatty liver, low dhea and testosterone levels, trichinosis (recently diagnosed), a couple mycoplasmas, anemia...

since i don't have health insurance, am going to a county health clinic, so have limited resources to call on, although they have started sending me to a top-notch rheumatologist

am trying to find more natural alternatives to ama pharma treatments, as am concerned about the side effects of the drugs and the toxicity levels' effects on the organs

currently seeing a homeopathist and an accupuncturist, take a number of vitamins and other supplements...have read that vitamin c treatments can stop the autoimmune response...would anyone have more information on this topic...can it be self-administered, dosages, would litmus paper testing of ph levels be a good monitoring device...

am hoping to browse your site for whatever information might help the lupus newbie...nice to be here

[KittenPaws]

Warm welcomes to the site Darth :D

Love the name hehe.

God bless you and best wishes to you.

:love: Kitten

[bananawear]

Hi Darth- Welcome to the site- I'm sorry to hear of the health problems you have been having, but glad to hear that they have you seeing a rheumatologist. Usually they can get you on the right track with treatments and testing and once you get the right treatment plan, for most of us we find that we can start feeling somewhat better.

I have done some studies in naturopathy as well and I can tell you that for us lupies and really for anyone with an autoimmune disorder, high doses of anything can be potentially dangerous. Our bodies don't filter things out the way that normal people's do and often times rather than flushing out excesses of what we don't need, we can build up toxic levels of vitamins and minerals. I know from personal experience when I "OD'd" on vitamins and ended up in the hospital on an IV. Please be careful with supplements just because they are over the counter does not mean they are "safer" than prescription medications especially for us lupies.

Also if you are taking any prescription medications, please be sure to clear any supplements you decided to take with your dr. as some can have serious interactions with our prescription meds. I always scares me to read about people self administering high doses of vitamins and herbal supplements. Plants are very strong medicines too. But, since they are not regulated, the doses are not regulated so you dont always know exactly what you are getting.

For many of us here we would not be alive with out the prescription options we have had available to us - talk to your dr. about what options you might have available to you. There may me more options than you might think.

The very best to you -

Good luck and take good care - Chris :flowers:

[raggedyann1]

Darth,

I can understand your frustration and desire to find a "natural" way to deal with lupus. The problem can be that your immune system does not need boosting it needs to be quieted down. Lupus makes our immune system go sideways out of control.

Here are a couple of web sites that show you how to apply for medications free delivered thru your doctors.

https://www.pparx.org/Intro.php
http://www.needymeds.com/

MayoClinic report on Vit C Large quantities of vitamins are not always helpful. In fact they can be toxic on our systems. My brother kept getting kidney stones until one doctor asked how much Vit C he was taking. He stopped teh mega doses of Vit C and hasn't had kidney stones since.
http://www.mayoclinic.com/invoke.cfm?objec...40A7A1F11E98FF0 (http://www.mayoclinic.com/invoke.cfm?objectid=4C95CD00-664E-46DD-840A7A1F11E98FF0)

I sincerely hope you will follow the rheumatologists suggestions when you get an appointment with him. You stated that you almost died 2 years ago with lung problems. The next time the doctors will want to use steroids and other meds to get it under control. If you refuse to take the meds you could die next time.

Most lupus patients today live a normal life span. They develop a relationship with their rheum and follow his directions.

Let us know how you get on.

Take care,
Karen

[here]

Everytime I read your tag line it cracks me up. My husband is a big star wars fan. I t is really funny.

I hope you journey finds you some answers. Be careful of the natural route. I have explored this route myself in desperation and found sometimes it can do mor harm than good. There are a lot of things that are not good for certain conditions and you should clear it all with a medical professional before taking any of it to make sure you don't step out of the the oven into the frying pan.

Welcome to the site. Take care.

J :flowers:

[James35]

Hi all,

Just checking in to see what's new.
I've just spent 4 days in the hospital with a lupus flare (this has been going on with varying severity for the past 6 months now. Anyhow, I'm still sick, but not on death's doorstep. The hosptal was short of beds, so they sent me home. I'm probably better off here anyway. They still don't know what's going on, except that my lungs/heart are involved. I've had x-rays and CT scans - reports won't be ready for a week or more. More waiting. I was supposed to go back to work at the beginning of July, but it looks as though that will be postponed for a while.

Anyhow, just wanted to update, vent, communicate with those of you who understand this frustrating process and disease.

Bye for now.

James

[hurley]

Hi James

I'm sorry to hear you've been ill and in the hospital. Hopefully your x-rays and CT scan will give you some answers.

It is frustrating and difficult to wait...and to put your life on hold until somebody figures out what's going on. I hope you will take it easy for a while and let us know what you find out next week.

Hugs.

:love:

Julie