My Journey 01-07-02
In 1980, this all began with a swollen knuckle. Since I was a sign language interpreter, I thought I would see about it, as my hands were always aching too. I saw a rheumatologist who would be treating me for the next 16 + years. He started with blood work (all normal) and then the nsaids, which gave me some relief. Then, my wrists and hips also began to hurt. That brought on the Plaquenil and then the prednisone. We ventured on with more muscle pain and in 1983, I wound up doing a month of rehab at a rehab hospital to try and get strength back. However, it backfired as I had an over-enthusiastic PT who felt 30 reps of everything were appropriate! I went into a horrific flare that was so intense I was in a wheel chair as I was no longer able to walk. They gave me a full body brace, as that was the only way I was able to walk with crutches. This is how I was discharged (after walking in).
The medications were increased. Now, it was high dose prednisone, gold injections, as well as 3 different stomach pills for irritable bowel syndrome. I took off the rest of the school year as an interpreter in a school for the deaf and was able to get out of the wheel chair by teaching myself how to walk again. I held on to a desk chair with wheels. It did not end there.
In 1985, I did finally get diagnosed with Lupus and Sjogrens Syndrome. The lupus was very active - brain spinal cord, and kidney. I now was on 90 mg of prednisone for 1 year, along with Imuran, a DMARD. To get this dosage down, I went for 9 months of Plasmapheresis (now known as the prosorba column). It reduced the prednisone to 20 mg a day and then he added methotrexate for 5 + years. The memory problems, concentration and central nervous system issues made keeping my job impossible.
The Sjogrens had been progressing as well and I needed to wear special glasses to keep the air from my eyes. The glasses were fully enclosed keeping dirt particles in the air from touching my eyes as there were no tears. I had a procedure done in which the drains for the eyes were permanently occluded (punctal occlusion).
In 1988, there was much rejoicing when I sought the aid of a chiropractor who could not figure out why I still wore this body brace. With the aid of a technique called flexion distraction (stretching) I was out of the body brace in 3 weeks( I had worn it for 5 years.)
In 1993, my condition had deteriorated even more and IV cytoxan was the next move. I went for treatment once a month for the next 2 1/2 years. I seemed to be doing better until in 1995 when the blood counts went down drastically and would not rebound. I had now permanent damage of the bone marrow. I was taken off this treatment and left with just prednisone.
Two months later, I was incredibly sick again and now could not swallow food either. There was just no saliva. I was now eating soft watery foods. I sought an oral biologist for the trials of Salagen (pilocarpine). I did not qualify but he took me on as a patient and prescribed the drug.
In 1996, on a visit to the rheumatologist, he had said there was nothing more he could do for me. At this point, I was so upset I went home and after a good cry, decided it was my turn now to help myself. I had just gone online so I went to the computer and on a bulletin board. There was the book "The Arthritis Breakthrough" (now "The New Arthritis Breakthrough") by Henry Scammell. I asked hubby to drive me for the book as I was unable to drive with the 22 medications I was taking. I did succeed in getting the book and read it. I was positive that God was talking to me as it seemed that these peoples' stories were mine. The infectious theory made sense to me. I wanted so much to try this as I had always had a lot of sinus and kidney infections and whenever the doctor used antibiotics, my Lupus and RA symptoms improved greatly. I had even said at one point, "It sure would be good if you could keep me on antibiotics as I feel so much better." The doctor said it was a theory long ago but not anymore.
I emailed the gal on an AOL bulletin board and she told me she was in remission. Her name was Emma. And then there was another gal named Lisa. She told me about The Road Back Foundation and I sent the money for the protocol. I went to my doctor, studies, protocol and book in hand. I asked him why this was never made available to me and he just laughed. I asked him for a prescription and he told me this would never work. I said that we needed to try it as I felt it would work. He was very unsupportive. I received a prescription, with a sneer from this doctor with no instructions on how to take it. I did not know at that time there was a particular generic you needed to take (no longer available) so now I was on the wrong medication and he wrote the prescription for 200 mg a day. I decided I would go the RBF protocol of 100 3x a week. I did that as I just had a feeling that it would be better (I probably avoided a massive Herxheimer reaction!).
My husband had a business trip in Boston so he looked up the doctor from the book there, Dr Trentham. I was able to see him the following week. He felt I would do well on Minocin and was dismayed to learn I was already on it, 3 weeks all wrong! He explained how to take it, when to take it and how often. He felt that the Herxheimer was past and, besides, I was still on methotrexate and prednisone as well as an nsaid among the 22 drugs. The methotrexate and prednisone do lessen the chance of a Herxheimer reaction, which I did not know then. He said we will start on the Minocin and take it from there. As I was so very sick and not changing any other medications, I decided to stay with him as I felt hope for the first time in years. His attitude alone made such a difference. I did not mind the almost 5 hour trip, one way.
I did wonderfully. In about a month, I noticed I had more energy and much less fatigue. In 2 months' time, the headaches had increased. I did have migraines anyway but somehow this was different. It continued along with aches and pains. I hung on! (It eventually did let up as well as the brain fog). In the third month, I stopped taking Darvocet or Vicodin anymore. I just forgot about them. The pain was improving and I was sleeping better.
My husband noticed how much more I could do and without resting. Then, the headaches lifted BUT so did all the brain fog and memory problems. I can remember Mike asking me a phone number and I told him. Then, we looked at each other. I ran to the phone book to check it. It was correct. This happened over and over. I was ecstatic! I then found I was able to drive, as the pain was gone as well as the confusion in my head. They were not long trips but it was freedom! In the 4th month, the doctor lowered my prednisone by 2 mg and then 1 mg every 4 to 6 weeks until I got down to 5 mg. Then, we increased the time to dropping 1 mg to 6 to 8 weeks. I was doing great. After about 6 months on Minocin we also dropped 2.5 of methotrexate .
It all had begun. I just could not believe this was happening. It took 14 months to wean off the prednisone and an additional 6 months to wean off the rest of the methotrexate. At the 8-month mark, the irritable bowel syndrome started to leave and I was able to start to drop some of the stomach medication. I now was able to sleep without any sleep aid as well.
I needed a check up by the Sjogrens doctor and he asked what I had changed. I was only on Minocin about 2-3 months but he noticed an increase in saliva as he did measurements each time. It continued to progress. I was not putting drops in my eyes any longer either. I started to eat fruit and meats again, as I was unable for a long time. I did not need the special glasses anymore. When I saw him after about 3 years on Minocin, he told me my saliva levels now were normal. I went to the eye doctor who concurred that my dry eyes were no longer as there were adequate tears again.
I have been on Minocin since 1996. I have discarded a neurological drug, 3 stomach medications, all sleep medications, all pain medications, prednisone, Methotrexate, gold and a diuretic. For rheumatic disease I take Minocin and a NSAID which I believe I will also get off. (I did). I do take supplements as my body has been so depleted by the toxic drugs I took. I sought the counsel of a certified clinical nutritionist who helped me with leaky gut and problems caused by the cytoxan and methotrexate.
I can honestly say I have so much more energy than I ever remember having. I can climb stairs. I love to play golf again, to swim, to snorkel. I am able to travel (and do a lot). I was bedridden for so many years that I feel like I got a second chance. I do believe had I remained on all those drugs, I would not be sitting here telling you this story but I would have come to a tragic end. My husband and I are devoted to the spread of antibiotic therapy and making sure everyone has the opportunity of knowing about it.
One year ago, I made the discovery that my allergies were worsening and again standing in the way of the treatment. I did start NAET (an allergy therapy) after much research, and it has allowed me to unload from my immune system several things that have impacted me both food and environmental. The biggest ones were mold, sugar, wheat, beef, dairy plants and smoke and yeast.
I have also sought a nutritional approach using the vega machine, a German instrument that helps detect viruses as well as depletions in the body. With both of these approaches this last year, I feel even bettter.
The antibiotic protocol works well, but for me as well as others, we need to address other things as well!
Marge Cortegiano, NY
Diagnosed in 1980 - on antibiotic therapy since 1996
I was diagnosed with Sjogrens Syndrome in 1982. It began with very dry eyes that at first were light sensitive. They became so dry that it was difficult to see without everything becoming blurry. I was getting a pain in my eyes. At this point, I needed to use moisture chamber glasses to keep the air from drying my eyes further and thus reducing some of the pain. I was concerned that particles in the air would fly into my eyes and stick to them as there was no moisture to shield them. This often was happening. Normal daylight even bothered them, let alone sunlight.
I was becoming more and more homebound as smokers bothered me as the ashes would stick to my eyes and my eyes just would sting instead of water. Life became using artificial tears every hour, living in darkened rooms and just not using my eyes. Watching TV for half an hour was a luxury as well as reading. When reading, all I could read at one time was a paragraph or two as the focus that I needed to read dried my eyes even more causing more pain. I realized I had lost my sense of smell when my daughter who was then 12 made a tuna fish sandwich for me and I told her it must have turned, as it smelled terrible. She insisted it wasn't but I never knew this was a manifestation of the disease. Again not realizing this, I opened the refrigerator one day and the same thing happened, a foul smell occurred. I though a good portion of the food away, washed out the refrigerator and, you guessed it, the smell was still there! It was the lack of moisture in my nose that was causing this.
Dry mouth made it impossible to eat meat, hard fruits or hard foods in general. I did not even realize I was gravitating towards softer foods and foods with sauces. It was just easier to swallow.
My voice grew hoarse and I suffered with laryngitis ,often. I was trying at that time to make a patient education tape on Lupus When they replayed what I had recorded a distinct click could be heard. This came from the dryness and it did not seem to matter how much water I consumed.
I learned about a clinical trial at our local University hospital for the use of pilocarpine, now called salagen. I called the doctor and he agreed to see me. When I met DR Sreebny he had said I was already very severe and he wanted to be sure I received the medication so he advised against the trial. As it was a double blind study. I became his patient and he followed me as though I was in the trial. This was in 1995. I took the medication 4 x a day and I did begin to improve. I no longer needed the glasses nor the tears and I was more comfortable.
At a checkup in 1996, Dr Sreebny of Stony BrookU( now retired) was doing saliva measurements, that he always did and asked me if anything was different. I was! I had begun Minocin 3 months before but neglected to tell him before he asked. It was prescribed for my Lupus and rheumatoid arthritis that I have as well. On examination, he told me that the glands seemed to be secreting more moisture now . I never expected this!
I saw him 3 months later and again, an increase in saliva and moisture. After 9 months on Minocin, my saliva levels were in the normal range for the first time ever.
After 1 yr on Minocin I went for an annual eye exam. The eye doctor asked if I was doing anything differently. I told him about the minocin and that I had reduced the cortisone as well as the methotrexate.He said he wanted to do a Schirmers test to check the amount of eye moisture. I rebelled as the last time this was done 2 yrs before, the doctor and I scraped the paper off my eye as there was NO moisture! This time was very different. I measured a normal reading. He said that the Sjogrens is well under control.
On the minocin, I can now read novels, work on a computer, eat anything I wish and have regained some of my lost sense of smell. I no longer use tears or need special glasses. I am no longer limited.
Every time I return to Dr Sreebny, he remarks about the change in me and has said to me that from where I was when I came to him and where I was now , it was a miracle. I do, too. I was grateful for his supervision, as I am able to know that I have improved. I so appreciate every day for the way I feel. As an extra bonus, my rheumatoid arthritis and lupus are also in control!
Ra/Sle SS FMS AP 6yrs
You can reach me at email@example.com