My name is Kathryne and I have severe ankylosing spondyltis. I am a nurse and I can remember back before the antibiotic protocol (AP) how I studied the protocol intensely before embarking. When I did, I promised myself that I would be determined and not give in. I knew it was the best decision for my body.
It has been about six years now that I have had AS. If it weren't for the antibiotics, I wouldn't be here , it is as plain as that.
I remember the first time I had pain, it was in my left knee. I thought it was just some wear an tear, seeing to I was working two jobs that demanded a lot of physical work. Nurse and airline stewardess. I was prescribed the usual NSAIDS and it wasn't doing much. About a week later while coming out of the supermarket, I fell to the ground, paralysed from the waist down. We thought it may be a bizarre side effect of the NSAID, so I stopped it, but a week later the same thing happened. I was diagnosed at that point with Guillain Barre syndrome. I wasn't convinced it was that and I wanted to have more tests. I started to have pain in both my feet, severe enough to not be able to stand anymore. My back had ripping pain and later came severe hip pain. We thought maybe it was from my car accident that I had a few months before, that maybe I forced something and it put the spine out of alignment. I asked for a CT scan for my whole body. We did blood tests and nothing showed a rheumatic disease at that point.
Months went by and I was getting worse and worse. I came to a point where I couldn't walk, dress on my own, let alone take care of anyone else. I was more sure that something rheumatic was going on. These diseases have a way of being crazy in the beginning. By four months later, I had severe pain in my head, but two different types. Now, everyone thought I was nuts by this point. I knew I had a sinusitis, they did an x-ray and nothing showed. I told him that it was not frontal, it was more sphenoidal and ethmoidal sinuses. These are more of sledgehammer type of pain right in the center of the head instead of the face. My doctor ordered a brain scan to rule out a tumour since my mom had had one. Within a few days of that, I went into a severe pain crisis in my head and was hospitalized. I was diagnosed with severe trigeminal neuralgia since it was in the three branches. My BP would sky-rocket and they were worried about the possibility of a stroke. For some who don't know about TN, only 2% get this and it is know medically as the worst pain to man-kind. Believe me ladies, I would have rather had ten hard deliveries than one of these babies!! I had another CT scan and stayed in hospital for 5 weeks. the results of the second scan came out before the first and they said they saw just an artifact (a blur caused by the machine). So, about a week later the first CT scan result came back and they saw blood in the brain, pus and bad infection in the ethmoid and sphenoid sinuses. Bad enough, I needed emergency surgery.
Gee docs, I think I mentioned that...(grin)
My neurologist wasn't too keen on me having the sinus surgery because he thought there was something else going on. I ended up having a lumbar puncture to check things out. This was NO picnic, I will never have another one in this lifetime!!! At this point we didn't know I had AS and they didn't know that my lower spine was a wreck so passing a needle wasn't easy, they had to try FOUR times. Ughhh.
With this, we saw the infection had hit the brain itself which in turn was what was causing some pressure and some neurological changes. Loss of sensation, paralysis, etc. By this point, I was a total wreck, my body had become a human torture chamber, pain was 24 hours a day, 7 days a week. Not one inch of my body was doing okay. I became severely depressed and yes, I had even tried suicide twice. My docs don't know how come I didn't die since what I had planned was extreme. They, as well as my family, understood why and didn't blame me for wanting to die. They had almost wished it themselves because they saw me suffer so much.
The turning point, just as things got worse, I saw a rheumatologist and he had ordered MRI's and plain x-rays. He, of course didn't believe I had anything because he thinks nurses know too much (can you believe that?) BUT, after seeing the results,he was floored and felt sorry for me. He diagnosed me with severe AS. My left hip was fusing, my sternum was fusing which meant this was going to affect my heart and lungs, since this affects connective tissue too. My lungs would eventually become compromised, a respirator would be needed and well, death after that.
Oh, thanks doc, I knew something was going on along, I didn't have this excruciating pain for nothing you know! Oh, by the way, look back about nine months in my dossier and see what I had diagnosed myself. He was floored...
I felt relief, believe it or not.I had a definite diagnosis. But, I can tell you, I cried for weeks. I was terrified, I didn't want to let my children see me like this. I even offered my husband a divorce! He thought I was nuts, of course. He has been the best supportive husband any woman could ask for.
A month later, my disease tripled, there was nothing he could do for me. I had to have surgery finally for those long over due sinuses, the anesthesiologist had a hard time intubating, causing a lot of damage. I ended up with a respiratory arrest. I thought my dream had come true finally. I woke up in the ICU, still around...
A month later, cardiac problems and more lung problems which now I had asthma and allergy problems.
I decided I had enough, I was going to try to find SOMETHING. I found the AP and my life changed forever, of course, I had a few bumps along the way. The pain started to subside after two months, I had to stop the NSAIDS since I had two internal hemmorrhages. I then had sudden right pelvic pain which I asked myself, what now?
Ladies, this is quite frequent for any rheumatic female to have ovarion cysts. You may want to look into it if you have too much pain there. I thought at the time maybe a tubal pregnancy, but no it was a huge cyst that I needed emergency surgery. The next month rolled around, pain started again. I thought I was just sensitive from the surgery during ovulation. My family doc thought maybe another cyst since every time I felt pain, there was something wrong. He was getting quite used to my body by this point. The GYN doc said he hadn't seen a repeated cyst in his thirty plus career. Then the ER doc thought it was an appendicitis. I told him that I wanted an ultrasound before I would accept to go on the operating table. Sarcastically following me to ultrasound to prove a point, he was surprised to hear that I had another cyst, this time it was twisting the ovary and killing it. You got it, another surgery!! Unbelievably, it happened a third time.
I think it was important to mention this not only to show how sometimes our bodies are complicated because of our diseases, but also that we have to be very careful in questioning our doctors' decisions. Granted, I am a nurse, but everyone has a gut feeling about something going on. Follow that feeling and don't let anyone push you around.
Back to the AP, I had done 10 months of Minocin on my own, since noone was willing to give it to me. I had my ways to get it though. When you want this desperately enough like I did, I just drank tons of grapefruit juice, enough to give a bad acne problem. Went to see a dermatologist since he prescribes this day in and day out. Walked out of there with a year's prescription until I could find an AP doc.
Luckily I found this support group and met up with Donna, whose doc was doing this. I went to see her doc and have been with her since then. I asked for the IV Clindamycin. She agreed since I was in severe shape. It was there my leaps and bounds happened. Within a year, I was walking around doing a lot of things, getting better all the time. I had some problems with my allergies which became severe enough to cause me a multitude of anaphylactic shocks, landing me in the hospital over thirty times. I practically died, God knows how many times.
I became so allergic, I couldn't eat anything. I went down to 70 pounds, everyone wanted to send some fat by FEDEX in the group LOL. I had to go on IV vitamins and minerals with amino acids. I was the only thing that could pull me through it. It was burning hell for my veins, I cried for months with this therapy, but I made it again. I was allergic to my antibiotic, I had to change over and then cam back after I started desensitization treatments.
It has been two years of desensitization, four years of AP and what came out of it? I am ALIVE and having a good time!! I moved a few weeks ago into a new house and I packed up and unpacked on my own. Never would have been able to do that. I did over do it and am paying for some of it now, but with my antibiotics back to a regular pace, I will be fit in no time.
I wanted to share everything with you even if it were longer because I know how desperate some can become and others who want to give up. My story has helped many to keep fighting and it is what is important to me. You have every right and every chance to get back your life as I did. It was against all odds that I would be here and in shape. Hey, I can even play hockey with my seven year old! I do what I want and I don't suffer anywhere near what I did. I became painfree. I would have never thought in a lifetime that was possible.
All my docs are surprised to see how I came back from a crippled human being. They believe in this protocol, they have asked me to teach it and I have helped many people over the past years to come back, many in remission.
We often ask why and what did we do wrong? Life is full of experiences and we only find out later what came out of it. For me, I received alot of satisfaction helping others, it even helped me to help others.
But the best part, this little nurse is becoming a DOCTOR! I am currently doing my studies and will be going into research for chronic diseases and ... maybe... a little side line of prescribing the AP. (big grin).
I hope this helps and I wish that all of you make it to a better quality of life.
Update June 2005
I thought I would give you an update that I think you will like to read. I would like to tell you that I am doing extremely well and that I have officially completed my Doctorate in Science, with a major in International Health.
When I first started my studies, I did not know if I would see graduation day of my first degree since I almost died so many times. I remember reading my pages ten times and just getting by in my grades in the first course. After that, things changed drastically and I was feeling alot of emotions walking on stage for my degree. My brain fog left and distinctions and high distinctions rolled in. I received awards of excellence in both my Masters and Doctorate degrees.
I have to say that disease has its way of giving us power and determination we never thought we had. Today, I am well and I promised myself I will make a difference in peoples lives. I have had the opportunity of giving conferences on health and talking to people of my experience to over 8,000 people at a time. I decided that I am continuing more studies in research since it has given me all the tools that help me successfully help people make it back to health.
You can reach me at firstname.lastname@example.org