SUSAN, lupus

During the past few months I have been on a remarkable road to discovery. It has been quite an adventure.

Several months ago there was in article in Dr. Julian Whitaker's newsletter, Health and Healing, which caught my eye. It talked about immune diseases (scleroderma, arthritis, lupus, etc.) being caused by "mycoplasma infection". He recommended looking into the treatment if you have one of these diseases.

My husband and I began researching Dr. Thomas McPherson Brown's work and decided he wasn't a "quack". During the 52 years Dr. Brown treated patients with antibiotics, he had an extraordinarily high percentage of improvement in his patients by using low dose, safe antibiotics. This got my attention!

As I looked into this further I obtained lots of helpful information from The Road Back Foundation.

Speaking only for myself, I had psychological as well as physical side effects from steroid treatment which had me on an emotional roller coaster. I felt absolutely awful while taking steroids and did everything possible to get off and stay off. My worst fear was to start having flare symptoms and then need to take steroids again.

Dr. Brown's theory made a lot of logical sense. Being told my immune system was attacking me had always been difficult to accept. Also, an infection fit my symptoms; I had low grade fevers on and off; hot, red, swollen joints and frequent severe headaches. I dragged around, couldn't get out of bed in the morning and then couldn't wait to get back to bed at night.I soaked up as much information as I could get my hands on. I called patients around the country who had used Dr. Brown's protocol successfully.

When the National Institutes of Health published the results of a large RA trial called the MIRA trial, I was convinced this was a treatment worth trying. It was safe, effective, and low cost, and might put me on 'the road back'. I was cautiously optimistic on the outside, but inside a little flicker of hope was springing up.

I now had to find a physician and convince him/her to prescribe this treatment for me. As you know, this has not been a widely accepted treatment for lupus or we would have heard about it by now. I needed a physician who would at least listen to me about this, look at the information I had gathered, and read the published studies with an open mind. A doctor fitting these requirements was recommended to me and at our first meeting I explained the history of my symptoms and how ill I had been. I explained how I had been told there was no known cause for my disease and no known way to significantly improve my condition. I had managed to function without steroids recently, but was still taking Plaquenil, and when I tried to cut back and get off, I experienced symptoms again. I never felt very well and my life was extremely limited and stressed.

We discussed Dr. Brown's theory in depth, and I presented written materials gathered by my husband and me. The doctor read it and agreed that despite the different diseases the mycoplasma could be involved in all of them.

A specific treatment was decided upon and we included diet, exercise, emotional and mental attitude, vitamin supplements, and my husband's attitude. My doctor was very excited about the implications of this treatment, not only for me, but for other patients as well.

I was given all the standard tests and even some additional ones, so my exact condition could be determined. When the results were all in, treatment began. In my case there was no need for IV administration of antibiotics, so we followed the protocol precisely as laid out by Dr. Brown, beginning with a "punch" (high dose) of clindamycin orally to eradicate any long-standing microorganisms resident in the gut, respiratory tract and other areas. Then the low dose regimen of doxycycline was begun and continues to this day.

Before beginning treatment, I sat down with friends and loved ones, telling them all about the treatment and how I might get worse before I got better, and asking them for their help and support against my becoming discouraged.

I was prepared to work at this for years if necessary. Initially, feeling bad meant I was getting better because the mycoplasma were being destroyed. I no longer thought of myself as suffering from lupus, but from a long-standing infection, and I intended to eradicate that cause.

It's probably hard to believe, but this part is difficult to write. I want to present it as objectively as possible. When I was younger and needed to decide something or look at it objectively, my mom suggested making a list. That's still a good idea, Mom, so here it is.

I have been able to kick Plaquenil without symptoms recurring after taking it for six years. I've been off prednisone for quite a while now and I remain deeply thankful for that as well. I continue with my vitamin regimen, although I take less than I did during my illness, and regular exercise is a must for continuing good health. I am taking 100 mg. of doxycycline three times a week, and am taking no other medication.

My symptoms while taking Plaquenil and prednisone: joint pain; chronic fatigue, bloating, weight gain, rashes (allergic sensitivities), mood swings, bruising, nausea, depression, hair thinning, chills, trouble sleeping, slow healing, sun sensitivity, crying episodes, severely limited activities/social life, chest pains, painfully cold fingers and toes, CNS "lightening flashes" in my vision, guilt, low-grade fever, temporary blind spots, pains when breathing deeply, terribly sick headaches.

Symptoms while on Dr. Brown's antibiotic protocol: none of the above with the exception of sun sensitivity. And I got a bonus . . . I have had a chronic bladder problem for 15 years. Unexpectedly, this has dramatically improved. Also, I had a terrible case of shingles in January of this year, and was off work a month with it. Folks, there were absolutely no lupus flare symptoms of any kind during or after this terrible case of shingles. Wow!

Also, last month for the first time since the 1980's I went out of town and stayed at a hotel for a few days attending a convention. I ate out, stayed up late, was excited and challenged for five whole days. I returned home on the last day, tired but happy and well. I rested that day and got up and went to work the next day just like a healthy, normal person. Only you who have also suffered for years will understand how profoundly wonderful that was for me. For the first time in years and years I was my "old" self. In a note to my friend I found myself telling her how much it meant to be able to participate fully in something without becoming ill or "paying for it" (a phrase you are all familiar with, I'm sure). I didn't need one single nap the whole time!

My husband chuckled the other day and said, "You're getting feisty again - I used to really like that about you. I've missed it." I'm looking forward to the future again. There are no rashes on my body.

I'm taking occasional evening classes. making new friends and having the energy to do things with them. I'm pain free all of the time!

I began antibiotic treatment in August 1995. Recovery has been slow and not at all dramatic on a day-to-day basis. As a recovered scleroderma patient said to me recently, "you don't just wake up one day and you're well." Feeling good crept up on me, the same way being ill did. Things changed for me little by little. I found myself looking at the clock an hour past my usual (very strict) bedtime, and I didn't feel tired at all yet. After shopping with my sister all afternoon (and boy, can that woman SHOP), when I got in the car, I noticed my legs didn't hurt like they usually did. After a particularly stressful day at work I would find that I didn't really need to go to bed early that night. My eyes didn't ache with tiredness and strain after a long period in front of the computer screen. I didn't need rest breaks during my 3 mile walk in the morning anymore. Nothing sudden or dramatic happened to me. It wasn't real easy, it wasn't real fast. Just day by day, little by little, I got better.

Finally, I want to share something personal that happened just the other day. When we first wake up. my husband and I like to spend a little bit of quiet time together talking. On this particular morning, my husband turned to me, held my face in his hands, smiled and whispered to me, "Not only do I have my wife back, but I have my life back again! It's wonderful!" He had tears in his eyes when he said it.

Susan Mauer

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