You are here:

Lupus/Best Alternative Treatments Lupus/Sjogren's

Advertisement


Question
Hi,

I have been recently diagnosed with Lupus/Sjogren's earlier this year, may have been developing for a while before, but did not impact my health in any way previous to May 2013, when everything hit at once.
 I am interested in the alternative therapies that are available.  My doc has presented all the conventional treatments out there, but I am looking to avoid maost of these for now.

At this time, the most irritating issue I have is the dry mouth of Sjogren's.  Nothing, including either Salagen or Evoxac are working much any more.   What is available to me?  Dry Eyes are not bad, so far.

Do you have any info on Low Dose Naltrexone?  Been reading a lot of experiences on Yahoo groups and it seems worth considering.

How about testosterone supplementation.  I had an endocrinologist do a blood workup on me, DHEA is <15 and my TT has fallen by 1/3 since last years blood workup at my regular doc, from over 600 to just under 400, close to borderline.  Will letting him supplement this and bring it up help me?

What ever you can suggest, I will look into it.  Thank you for your time.

John

Answer
Hi John-

Thanks for writing in!
Your open-mindedness and willingness to look into anything suggested bodes well for your healing.
And I agree, if you can avoid the meds without jeopardizing your health, do.

Alternative medicine, just like regular medicine, is going to take a little trial and error to figure out what works best for you individually. It's definitely worth doing some experimenting to see what helps you get better when you are dealing with a diagnosis of something chronic.

Although drugs saved my life more than once, I'm very aware of the limits of mainstream medicine (drugs/ surgery) in terms of helping with chronic illness, esp. over the long haul. Medications simply masks symptoms- it doesn't address the things triggering the symptoms. Alternative  medicine can definitely help with that. I am a living testimony to the power of alternative medicine.

Things that helped me specifically to recover from each of my 3 very serious lupus flares: acupuncture, chelation therapy, enough rest, appropriate exercise (not pushing too hard, but not being slack), having fun with friends, journaling, supplements, and diet change. In 2002, I could not get up and down one stair. Now I tap dance.

During my recovery, I kept a journal of my symptoms and progress so I could tell which things were helping me the most, and what might trigger symptoms. I did that on paper, because it was 10 years ago. Now you can do a much better job and more easily, on a smart phone/ tablet. A really good app for tracking symptoms and triggers (or "factors") is Symple. You can get that for free, assuming you have some sort of device that uses apps. If you do not have an app-friendly device, I do have a symptom tracker I created in Microsoft Word. You can get it for free when you sign up for my mailing list at http://www.thesingingpatient.com .

The diet change meant eliminating foods I was allergic/ sensitive to (in my particular case, anything with aspartame/ nutrasweet/ equal, eggs, all dairy, all gluten, shrimp and black pepper). It's different for everyone, but there is a short list of foods that are the most common allergens (peanuts, tree nuts, gluten, dairy, eggs, shellfish, fish, corn, soy). If you have a food you are allergic to, it's usually something you eat every day, and crave, and often have for breakfast.

I will mention that I read that 100% of lupus patients have food allergies. Worth looking into. And there is a difference between the allergies that show up within 24 hours, and reactions that can show up as much as 3-4 days later. Different antibodies, and you're far less likely to connect the dots yourself. Knowing what foods I'm allergic to and staying away from them means I am able to go completely without immune suppressants, which is rare for someone whose lupus was as severe as mine was (stroke, congestive heart failure, kidney failure, anemia, neuropathy....)

I have tried low dose naltrexone. Some people have had great success with it. I did not, because my chronic pain was not under control, and I couldn't take pain killers while on Low dose naltrexone. I did tell a couple friends with MS about LDN when I was looking into it and it helped one of them tremendously. Any info I have on LDN is probably the same you found on the listserv.

I will recommend this very good article on autoimmune diseases (scroll down for list of suggestions):
http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.h

And this one from Dr Weil has a few recommendations (again, scroll to bottom):
http://www.drweil.com/drw/u/ART03366/Sjogrens-Syndrome-Dr-Weils-Condition-Care-G

I believe you can restore your health completely, if you are willing to keep digging and experimenting until you find what works for you.

I hope I have been of some help without overwhelming you.
All the best-

Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich

Lupus

All Answers


Answers by Expert:


Ask Experts

Volunteer


Carla Ulbrich

Expertise

I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.

Experience

I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Organizations
Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

Publications
How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

Education/Credentials
BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

©2016 About.com. All rights reserved.