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Lupus/SLE and brain involvement

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Question
Hi Carla. My boyfriend wrote you yesterday and thank you for your quick response. I've had an elevated ANA and clinical symptoms since 1998, but wasn't diagnosed until 9/2010. I took prednisone and Plaquenil for 2.5 yrs, when my MD stopped it in Jan. after episodes of altered consciousness, etc., Brain scan shows several areas of brain with hypoperfusion due to Lupus. My MD is deciding if Benlysta or Immunoglobulin IV therapy will help. Constant pain/fatigue are one thing, but brain disease with ominous implications is terrifying. Do you have any advice/personal knowledge about IV treatments , if neuro deficits can be reversed? Feel really alone and scared of what will come. God bless you! Thank you, Lisa Marie

Answer
Hi Lisa Marie-

I am not a medical professional, but having had lupus for 20 years, and having overcome several things that were "impossible" to overcome (congestive heart failure, stroke, kidney failure), I believe it is possible to reverse all kinds of damage. The human body is resilient and amazing in its ability to heal itself, once it is given the right set of circumstances.

The Immunoglobulin therapy is relatively new (as in, it wasn't around when I was in any of my flares, my last one being in 2006). Benlysta, as I understand it, is supposed to help you reduce- but not necessarily eliminate- your need for steroids (in other words, allow you to be on a lower dose of prednisone than you would be without the Benlysta). This is my understanding, and I could be wrong. I have never used either of these treatments.

My best results in reversing damage from lupus flares (I have had 3 major flares: 1993, 2002, 2006) have come from combining mainstream medicine (monitoring condition with blood tests, using prescription meds) with alternative medicine: building up your health with nutrition, supplements, and detox, as well as doing some emotional work. Emotional work meaning: have an outlet for expressing yourself safely (journaling, screaming at a therapist for an hour a week, making music, painting artwork, etc., spending time doing something pleasant with good friends at least once a week, be kind to yourself, forgive yourself, be your own best friend, find a way to laugh.

The IV treatment that really got results for me was not mainstream, but not that crazy either: chelation therapy. It removes heavy metals and arterial plaque from your veins. My energy was amazing during the course of treatments, my kidney problems reversed, and my inflammation drastically lowered. It's extremely safe. You might consider it, if prednisone is not an option and your inflammation is not under control. As you'll see from this wikipedia entry, not everyone is on board with the idea of chelation therapy. I can only speak from my own very positive experiences with it. http://en.wikipedia.org/wiki/Chelation_therapy

The other thing to look into is food. There's a strong possibility you have food allergies (most lupus patients do, and they are usually the kind of delayed allergies that show up the next day or even 2 days after eating the offending food).

If you would like to skype or talk, please send me a private message. I feel I could give you better feedback if we were interacting in real time, and I could hear your voice and let you tell me more of your story.

No strings. I can just tell you need to talk to someone who has been in your shoes, or a very similar pair anyway. Would love to be a listening ear for you.

hugs-
Carla
Carla Ulbrich

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

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Lupus

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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

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