Things are finally settling down after all my traveling. Things went very well over in Belgium, except the air traffic control going on strike the day we were leaving. This meant all hotels were full and forced us to make a very tiring road trip...
The name of my doctor is Dr. Cecile Jadin. She grew up in South Africa, then moved and worked as a doctor in Belgium, and now lives back in South Africa. Her father was a pioneer in the Rickettsia field. She became a surgeon and then eventually started working in the same field as her father.
She has been very successful in treating people like myself and people with CFS. I am going to be buying her book, which can be found at the above link. Based on what I know about her so far I would strongly suggest anyone with CFS to read it.
I met lots of people there in the waiting room. Most of them have Rickettsia (there are many different types). There was one other girl like me who had Rickettsia and Lyme. One lady there from England (who caught Rickettsia in England she thinks) was bedbound and in a wheelchair three years ago. She is now significantly recovered. No wheelchair in site! She is still on treatment though. There was two people there who were on deaths door when they first started seeing her; one with liver failure and one with heart failure. Both are now well enough to work!! They are still on treatment.
People come from all over the world to see her. There was even people there from the US. She is more knowledgeable about Rickettsia then most docs in the US. So many of the stories where the same. It was great for my Dad to meet and hear other people with the same stories. He couldn't believe how we all described things the exact same. Seeing this he can't understand how the medical world doesn't take people like us more seriously.
She was a very nice lady. She basically said my case was pretty straight forward. She could not understand how I wasn't taken more seriously and treated after suddenly getting sick in India. It is the India part that made her say straightforward. I obviously agree with her!
She was fascinated with my back rash, which had got a lot worse since putting photos up here a year ago. There was an American doctor in the room and she said it looked like the spotted fever they see in the US. One of the Rickettsia I have is a spotted fever so I guess it makes sense. As I have all different marking she said some are probably from die off. She took some photos of it anyway.
She said my heart was making a clicking noise and that it is suggestive of some damage. However she couldn't say that for certain as it was her first time hearing it. As you know I had heart tests a while ago which picked up on a couple of things, so I don't know if it is just one of them. My doc over here said it is suggestive of Mitral Valve prolapse, I think? which was not on my cardiologist report. Anyway, we can check it again in the future.
And on to her treatment... Well, Rickettsia and Lyme are treated with the same antibiotics which makes things easier. She doesn't believe in IV as she thinks it is to dangerous for the liver. She also doesn't believe in continual antibiotics, as she feels they will just learn how to become resistant to them. Instead she treats you for one week each month on very high doses. Therefore you give them a huge kick in the ass and then hopefully the body can do some of the fighting for the other three weeks, then Bam!!!! again with different antibiotics at high doses again. Each month I will be on two new types of antibiotics.
I finished my first week last week. I FELT LIKE CRAAAP on them : ) I was so weak and shaky that I couldn't stand out of bed for long. I was on 1200 mgs a day: Doxycline 200mg a day & Ciprofloxacin 1000 mgs a day. I also had to have an injection by my doc every morning of Neurobion to assist the body in killing off what has been aggravated by the antibiotics. I also had to take a nexium before breakfast and acidophillus thingy at midday. Oh yeah, also I was told to drink slimline Indian tonic water to assist with absorption. One without aspartame as she doesn't like us taking that. The only one I could find without aspartame is Tesco's on brand. Also I had to take a hot bath 40 degrees C each night for ten mins with two tablespoons of Epsom salts in it.
So.... on to the NO's: NO caffeine, NO sun (not a problem here in Ireland), NO dairy products, NO smoking, NO getting pregnant, NO sugar (no giving in ever, as they feed on it), NO unpasteurised milk or yoghurt's, NO alcohol, NO close contact with paint, fertilizers and pesticides, NO flu vaccine, Gamma globulin, Beriglobulin and Cortisone, NO boiled water if it has not been filtered.
CAUSES OF RELAPSE: Operation, Trauma, Motor accident, Traumatic fall, sugar intake, vaccine, dental work(do not remove fillings), change of seasons, travelling, new pet.
Dr. Jadin does have some other sites with research on them if you do a search online. Also I think there may be some kind of contact details on one of these sites. I did hear that she isn't taking on anymore patients at the moment. Whether this is true or not I don't know. I personally don't feel comfortable giving out her contact details myself. As I said though, seek and you shall find!