View Full Version : Newly diagnosed

03-28-2006, 01:59 PM
Hello everyone,
My name is Brent, and yes, I am one of the few men affected by Lupus. This is all new to me, but has already been a crappy road, as I have been sick for 3 weeks with a Urinary Tract Infection, then moved into Bronchitis. But I digress. Here is some of my story and history.
About 6 years ago I was in a car accident that left me a T11/12 paraplegic, and was able to recover well and become very strong, riding my handcycle 400-500 miles two different times in the Rocky Mountains over the span of a week on Ride the Rockies. I had gotten over being permanently disabled and embraced my new life fully. Then about 2 years ago I found my back was broked again, and I had also broken the titanium rods put in my back. So I had surgery to refuse my spine and put in new rods. Everything went fairly well, but about a year and a half ago I started having bad pains in my joints now and then, which increased over time, and happened more often. I finally went to get blood tests and soon found out I likely had Lupus. My Rheumatologist confirmed the diagnosis, but said that it was not affecting my internal organs. He did not really know what to call my condition, but said it was likely some type of connective tissue disorder.(I refer to what I have as Lupus, since that is what people are most familiar with) This was not a huge surprise to me, as it was on a list of possible diagnoses I provided to my Dr. upon my first visit requesting blood tests. When I first read the symptoms I had a strange feeling that I had Lupus. I was scared, but new that I could have a lot worse conditions. I was offered Plaquenil, but I am choosing to try a natural course of therapy instead. I may give in eventually, but not without a good fight on my own first. I am not delusional enough to think there is a miracle cure out there, but feel with lifestyle changes such as eating organic foods, raw foods, and following advice I have read such as trying a diet that is gluten-free and dairy-free, I can keep my symptoms and flare ups to a minimum as well or better than the chemicals that I deem dangerous. So I am in the process of eliminating gluten from my diet. I may continue to eat yogurt for the clear benefits it provides, but I may even search for a good dairy free probiotic for the long run. I have also read about something called glyco-nutrients, and will look into that course of treatment as well. I have ordered 4 different books recently about Lupus, and look forward to some exhaustive reading about other peoples experience with Lupus and similar disorders. And I am here to also learn from the experience of you all as well. After some reading, I can see that there are many kind people here with a wealth of experience, and I hope to learn from you all, and vice-versa. I hope that my being a man will not put me on the outer circle:)

Anyway, that is my story. I look forward to spending time here and helping in the shared fight we are all engaged in.
Peace and Comfort,

03-29-2006, 03:51 PM
Welcome Brent. You have certainly been through a lot and I'm impressed with how active you have been. You'll have to let us know how the natural therapy works. I've always been interested in natural remedies, but am afraid to try some. Initially I was like you and had no organ involvement, but now I have some mild kidney involvement.

There have been some men on this site here and there. Hopefully they will see this site is back up and running and start posting here again. Take care and I'm glad you joined.

03-29-2006, 04:07 PM
Hello and Welcome Brent :lol:
I've heard many people talk about glyconutrients and netraceuticles. I've not had any good feedback from any of my doctors regarding glyconutrients (maybe because it is not a drug - I don't know). There is not much known about them and they are not easy to find. But, here is a brief explanation:
nutraceuticals is an unofficial term that came from the combination of nutrition and pharmaceutical. The word is meant to describe natural food-based (nutrition) substances that have pharmacological (healing) effects on the human body. "Nutraceuticals" is a relatively new term used by the Food and Nutrition Board of the Institute of Medicine for all natural, standardized, non-toxic dietary supplements designed to optimize health through improved nutrition.
Glyconutrients are food. They are nutrients that we don't get in today's diet because we no longer forage for our food off the land and, therefore, we don't access these sugars which are available from plant roots and fungus, for example. The glyconutrient complex is a proprietary blend of plant-derived sugars that are available in powder or capsule form.
A glyconutrient is a new and more specialized type of nutraceutical. They claim to support the process that our individual tissue cells use to recognize, and communicate with, each other. Unlike other nutritional supplements, glyconutrients provide the monosaccharides (common sugars that share the same molecular formula: C6H12O) recently identified as essential for good human health. Glyconutritionals address the fundamental structure of the body.

It is believed that the medical community and even the alternative medicine community looks at the body as a garden: as something that needs to be 'added to' rather then simply improving the 'conditions' from which optimal health can develop. They are either adding chemicals or adding specific, generic nutrients to deal with the body's manifestation, rather than looking at the fundamental biochemistry.
The selling factor for glyconutrients is that they unique because they are not substances that treat diseases.
The glyconutrient complex that contains all 8 essential sugars is only available through distributors. One reason for this is that this technology is so new that the public has not generally heard of it and requires an education before purchasing. You can purchase single sugars such as glucosamine which is known to reduce inflammation caused by arthritis.

I wish you the best. Remember, you can come to us at any time and we will do our best to help you understand Lupus, to answer your questions and hopefully give you some peace of mind!

Peace and Blessings

03-29-2006, 09:07 PM
Welcome to the forum, Brent. Sounds like you've had your share of difficulties and yet have a great attitude. We're happy that you are here. Be assured that there is no inner circle, only a circle of friends.

03-30-2006, 10:41 PM
Thank you all for your welcome. And especially Susie for the extremely informative and insightful response. The glyconutrients seemed potentially like a snake oil type cure to me at first, but your response has given me hope that there may actually be something there worth exploring. I may be headed toward plaquenil soon, but I am determined to explore a few options first. I have 4 books about Lupus coming in the mail, so I am anxious to read those and see what others have tried and get a few more perspectives on Lupus. But I feel good having this site to come to and interact on a more personal level, know I will find compassion and understanding.
I do worry about future kidney involvement, since I deal with urinary tract infections regularly associated with my paralysis and catheterization, so I realize I must be very careful, but I feel I have a little time to think things through. I will keep folks up to date with what I find out through my experience and research.
Thanks so much,

03-31-2006, 11:38 AM

Please do come to us at any time. There is generally always someone here who can annswer your questions or just give you comfort.

I wish you the very best.
Peace and Blessings

04-02-2006, 08:11 AM
Welcome Brent - what a road you are travelling!

I tried some natural methods for a while - not seriously enough. I did end up starting plaquenil, for me it was a wonder drug - the pain reduced, and I feel it has kept the lupus to a manageable level.

Some time after I went on the plaquenil, I decided that going vegetarian might help the pain as well - I've cut meat, still eat some fish, have cut most dairy (I LOVE cheese but try to significantly limit it), and have cut out as much saturated fat as I can. Still eat chocolate - no mater what the health gurus say, I say it is a health food! :wink: And I take fish oil caps - 4/day now - along with other good omega rich foods.

But the dietary changes have helped I think.

Also - I stay out of the sun. THe moniker says it all. Winter and summer, sunscreen, wide brimmed hat, sleeves and slacks. I think that has made a difference as well!

Hugs of welcome -