Wednesday, 25 March 2015 10:17

How Isabelle infected her children with Lyme

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One day, as a child, I suddenly had a spectacular bite mark on my left leg. A big round red spot, swollen, painful... 

Mama was not worried, since more often I had strange reactions to bites of all kinds of critters. The spot went away and I did not ever consider it again. Whether I was sick of it then, I cannot recall.

At 17, I got mononucleosis. Before I had never really been ill. I was very healthy and very sporty. Maybe I've had the flu twice or something, but that was it. However, because of glandular fever, I could not go to college for a year. I was in the hosptial for two weeks and I was greatly weakened. Afterwards I did recover, but as I grew older the migraines started. As a teenager these would get worse. The headaches were downright unbearable, I lived on pills and syringes, just to be able to work in my twenties. Twice a year, the house doctor prescribed me to rest for at least a week. I was just overtired.

When I was about 28, it was so bad that I have put myself on a drastic sugar free and low carbohydrate diet. Somehow I then managed to boost my energy level spectacularly. But my happiness did not last. Around my thirties I began to have a more and more upset stomach. For a year I received antacids, which did not help. Coincidentally I heard around that time about propolis in a bioshop. A lady used it for her cat. I asked if it could help against stomach infections and yes, it could. After one week I got rid of those nasty stomach infections, which had bothered me for so long.

But that did not last. My headaches were coming and going, about everything that I ate gave me abdominal pains. Little did I know that I was allergic to gluten and could not endure potatoes and tomatoes.

My new love did not make anything other than dishes with pasta and lots of tomatoes. He was the cook in our house. My health was fading rapidly. I fared daily pain. It was discovered that I had a stomach rupture, my gallbladder would not work: double operation. That was in 2003. In 2004 I became unexpectedly pregnant. When I was 18 weeks pregnant, I once operated on an appendicitis.
Margot is born, everything went fairly well with me. It seemed as if I suddenly had no complaints! The headaches were gone, the terrible stomach pains too. Margot went beautifully! She was very small when she was born 45 cm, on the light side, but super quiet baby. She was breastfeeding, you could set your clock on her right! She was a lovely baby.

She was born by emergency caesarean section and between the maternity and surgical ward apparently fully descended, so they had to remove hair with clips. Because they like baby could cry sometimes for hours in the evening I went with her to the osteopath. Her skull had been quite a clip and that had occasionally be mobilized.

But then came the time when I had to go back to work. Margot had to go to the nursery and had bottle-fed. The absolute hell. Margot suddenly had unexplained reflux, she had to get betonpap to keep everything inside. I got started on a crybaby !!! Really any hour of the night she lay roar and I had from my bed. It was a nightmare. Every three months she was admitted with dehydration in hospital. The doctors found absolutely no explanation. Someone had me referred to a kinesiologe to have food allergies measure. Margot was allergic to anything and everything. I thought it would not hurt to give her biological and appropriate diet, but her dad was there not agree at all. He found it all too expensive. Meanwhile, she continued to cry until she was out of the bottle. Nobody has lain awake from there, except me.

I also found that Margot was very tired quickly, much needed sleep and not nearly as crowded as other children did. She was a very quiet child. I was on all sides reassured. It would be the nature of the beast. But it became very annoying when my partner and I parted as Margot was 2.5. She went to school all day. That's so tiring for such a small child. Then my ex had no eyes for her physical limits. Now, after nearly eight years, he has still not. Result: every two weeks I get a full on Monday overtired child back, for years, to patch up against the next 4 days with Dad. She is 9 days with me and thick four days with Dad.

Margot also complained regularly aches everywhere. Leg pain, arm pain, abdominal pain, knee pain... She hurt continuously, somewhere in her body.

In 2008 I started a very demanding management position. I worked myself almost to death, meanwhile, worked my house further, took courses at Vlerick Management School, engaged me Breathless by even there to start projects and lead ... and Margot was still around. It will not surprise you that I was not a great mother. The child was constantly in nannies. Cool nannies, but nevertheless she was contracted heavily in the week. In early 2009, after the car show and the launch of a new business unit, I felt immensely tired. I had constant pain. Sometimes I was in my office on the ground with my legs on my office chair. That is not an attitude that you expect from the company management. My house was gray, could read nothing on my screen without glasses ...

I absolutely could not progress. I went to the family doctor in June and she suspected that I had CFS. Even though I expected something like this to me, I wept bitterly. My career shot like an arrow from a bow forward, the sky was the limit. Professionally it was great for me the wind, but my health was failing. I was referred to Gasthuisberg for further investigations. First, internal medicine, then to 'Professor Van Houdenhove. I was despite my terrible stomach pains healthy. The abdominal pain was spastic colon, stress ... I worked too hard. Blah Blah Blah. When I was allowed to Van Houdenhove. Who said I had read his book again, it was all in my head and that was the end of it.

In October, I knew something was very wrong. I had to get up and down to Ghent for an interview at Vlerick Management School. That is half an hour away, a chat and a half hour back. I was stone dead, but I still managed to have a decent conversation, so I was admitted to the Master. I wrecked the muscle pain while driving. The next day I fell on the stairs and did not my arms awful lot of pain. When I knew this could not last long. I got up every day, wondering if this was the day that I would drop by my legs? Every morning I thought 'where is that brake' ?! I dragged myself on. My professional sense of duty was untold greater than my desire to listen to my own body. As a single mom you can not exactly afford to lose without a job. You have a responsibility, a certain standard of living and you want that child that you have put on the world gets all odds. So I pushed my body further and continuously shifted my limits.

The day of the referendum against the BAM route had already invited my friends. We fought very hard against that route, it was voted down and we would celebrate my favorite wine, specially brought from the basement of the father of one of my friends. I was dead Sick of that glass of wine! Since then I have never touched a glass of wine. Sin of Merlot ...
I continued to work until the end of 2009. In early December I got the flu, which lasted only. The fever did not go down. It took two

full weeks before I was better. I have located two weeks in my bed and slept. Of course I had to take care of Margot, but that was only in the morning and from 15h30 to 18h30. For the rest, I slept. When I went back to work the first day I thought I was all through! I felt perfectly normal !!! That lasted exactly one day! During the Christmas holidays I was two weeks at home. I thought that I would be late. Until one day when 4 was Margot who was standing next to my bed and asked, "Mommy, are you going to get up today, or do you lie in your bed?"

It was 11:55 !!!!!!!!! That little kid was from 6 am only down himself had taken something to eat and had been busy all morning quiet. Then I realized: this is really no longer! I went along with Margot 18:30 to sleep, but it did not work. My body was on, it could not. I had pain everywhere. Could barely walk up stairs. It seemed like I had run a marathon untrained. A ajuintje cut did an awful lot of pain in my arms. My stomach hurt so much that I literally crawled on the ground of misery.

January 3, 2010 I went to the family doctor. Who was amazed that no one had told me that I really had to stop working and I just had to keep moving. She had expected that they had seen at least the seriousness of the situation in Gasthuisberg. I was three weeks at home. Three weeks, three months. My Master Vlerick Management School was canceled. I was very sad, but I felt that it really was not. My environment responded with the usual: you have taken too much on your fork, go try to talk to a psychologist, maybe you should do some sports, even go on vacation, do have some fun, you have to think positive, I felt ... just that this was no burnout. As you come out with nutrition, exercise, rest, ... this was something else. My body had taken over and I got it straightened himself no longer.

One evening I thought, what if it really is all in my head? Then it's just a burn-out, or I myself should come from. So I went for a walk to take issue with the horns. When I was a mile from home, I am the library crept in and have entrenched myself between the bookshelves. I was so tired that I could not move, my blood pressure dropped, I felt the blood drain from my body and I just had to lie somewhere on the ground. The library seemed to 20h in the evening perfect. As I lay there on the floor in agony, my eye fell on a book 'strengthen your immunity. Since I certainly had located an hour, I thought I'd better bring a book and it seemed too appropriate. I spent three weeks there redone to read, but I'm going to get all the supplements that were in the book. There were quite a lot of pills and it was also another Pokke expensive! But I knew much that I as good as dead for a suit would be better to go on a big month ?! I made great leaps forward. Ok, I slept most of the day, still had pain and was still tired, but I felt that something changed in my body. Three months later I was on my bike !!! I bike still in first gear, as slow as a pedestrian, but I bike! My experimentation threw clearly paying off.

Meanwhile my sister was ill. As sick as I am. She stopped working. A friend of hers who had similar symptoms, had referred her to Dr. Kenny in Brussels. As we are going to get tested together. We did all of our appointments together. Two half is a whole. I remember that I told her 'well, Sister, I'm going to get better than you! As you see from where I come, I can stand back on my legs !!! ' Nothing was further from the truth.

It's nice to have a sister who is ill. I never had to explain something to her. If I said 'I'm tired, "she immediately knew what I meant. Others responded 'yes, we are also tired Senne, when we come home after a day'. It gives you to continue to explain.
Voilà, we went into treatment at The Kenny. I stopped there, my sister is going to continue and is now a bit better. I keep experimenting. But honestly, I'm not sorry that I have been with The Kenny. At least he tested by. He kept looking. He sat next to often, but probably not now. The commentary on this is that we had to swallow unpalatable. Doctors follow the control between-your-ears-thrust of Gasthuisberg. If Gasthuisberg says, but it will be so. Of Houdenhove his influence was awful big and has research into CFS-related symptoms in all ways crippled. You were put in a box, to not come out.

Obviously we have some specialists should expire because you sickness benefit was secured and the doctors were found to be good by the RIZIV. One was the biggest quack I have ever encountered! My sister went to. Meanwhile, she has fallen into disfavor and has no practice more.

In 2011 I was put on disability and I would be paid by health insurance. Of the health service, I was told that my disability was okay. Two days later I got a message from the Inami that I was deleted !!! I was deemed able to work full-time. I called the Inami and asked if that was perhaps a mistake? I did not really have a 9 to 5, surely some responsibility ... No, you know, they were not mistaken, a college of physicians in Brussels had taken a decision. Previously, I had to come for an interview in Antwerp, where she uithoorden me about my qualifications (not about the job I did!), All totally irrelevant questioned. There is never asked how the disease affected my life, what the symptoms are, what are my complaints ... I had no psychiatric report and that they found problematic! I did not know what I heard !!!

I had the day before crying to my mother called to ask if she could please Leuven to Antwerp, because I really was not able to take care of Margot. I was absolutely unable to work!

There started a lawsuit against the RIZIV. Everyone thought I was crazy. That is David against Goliath. I was lucky. I had a very good, correct and righteous justice expert (as in all other cases I definitely already heard not so) that allowed my file thoroughly studied, good questions and am not condemned because I had help and healing sought where I could. As a mother with a small child, you live and you are absolutely desperate to get better.

So I won the trial.

Meanwhile, I'm not much improved. I have very bad periods, sometimes a little better. If I'm in a year three days when I 'reasonable' feel, it's a lot. Reasonable that means that I feel something like this as someone who has done quite the night, instead of a week by doing and carouse all night!

In the summer it is usually better, but I guess that's because I more rest. I have a great terrace with plenty of sunshine. No one said you have to lock in to rest!

My muscle is very well controlled with MSM, my tummy is under control when I eat the right food: no carbohydrates and fruits and vegetables that I'm allergic to blot out of my diet.

But in all those years, Margot began to develop symptoms. Her doctor said you can be free of symptoms for years, but by a whiplash trauma, stress ... the Borrelia can be activated. What the exact cause was not clear. Margot has been tested in 2010 because Dr. Kenny said he found that mothers who had food allergies, which also contributed to their children. That seems somehow logical because children inherit the intestinal flora of their mother. Margot has been tested and proved allergic to a lot of things, although not always the same as the things that I was allergic to.

At that time, Margot had no discomfort, only fatigue. When they were in the autumn three weeks apart was with me, I put her in a very strict diet. Her energy level rose so hard that it looked like I had an ADHD child in the house. My sister who is three extremely lively boys in the house has had noticed immediately that Margot was certainly very fierce. The difference was huge !!!
But her dad disputed reports of "quacks" would seek the help of a specialist (who afterwards a pediatrician turned out to be), and was sent back with the message that Mom had let the wrong tests, and that Margot was too young, that you had to wait with allergy tests to puberty. I knew not what I heard. I could determine the difference clear. Consequence: dad did not join, just at mama she got proper diet.

After a while Margot thought it was really not fun to be different. She just wanted to eat like everyone else. Then she has eaten a while gluten, cheese, milk, ... At one point she began to pile on the complaints. She had very strong abdominal pain and headache. I put them back on a diet and it was slightly better. First, no gluten and no cow's milk, is currently no starch and no animal milk. Since all animal milk products are removed her abdominal pain disappeared like snow in the sun. Recently, she had another three weeks in a row with mama. We have very strict diet when followed and Margot had energy! But every time she comes back from dad she's overtired.

Early last year I learned that I had Lyme disease. I did not expect that I would have that, so it was a bit bored when my sister insisted that I should get tested. The test is expensive and I did not expect a result of it. I tested positive. Because Margot awful lot of complaints began to develop, which suspiciously like me who started to appear, I've also tested late last year. She tested very clear positive! The misery has now started again. Her dad denies the existence of the disease. But her complaint pattern begins to be quite extensive: atypical headaches, abdominal pain with poor nutrition, poor bladder control, poor vision, are confused and use the wrong words ... Despite the fact that they are very much miss classes at school by all kinds of infections, it remains doing very well in school. She's a year ahead, so obviously it is not.

Immunity has been tested and works only at half strength. She has now apparently also had mononucleosis. The last time I asked the family doctor to test that, he refused. Following a positive Lyme test, I asked another doctor to test her while anyway. Mononucleosis never goes out of your body. It sticks and is reactivated when your immune system weakens. That just means an extra tax.

Now that the long ordeal in court begins. Dad mom to court. Mom takes him under his daughter on medical adventures. After ten years showed that I had always been in the right, that my intuition is infallible when it comes to my own child. I already knew when she went to bottle feeding that something was seriously wrong. That does not speak in favor of the medical establishment !!! I have many times declared insane, a hypochondriac, an overprotective mother, a neurotic, ... It was so bad that when they learned in pediatrics at the hospital that I cvs (that was the initial diagnosis) would have it, she complaints Margot no longer took seriously !!! This was put in her file as a kind of warning 'mother cvs'! The child just did not get the medical care and attention they needed, because I would project my between-the-ear disease on her !!!

I follow no real medical treatments more. I'll look after my diet and take supplements which I'm sure they work. My daughter and I both have an osteopath who keeps our general condition in the eye. I am the father, the son she. These people perform really great job and have already helped us tremendously. Furthermore, I am looking for Margot yet provide the treatment to follow, although I have my reservations and doubts there. I suppose that's normal. Meanwhile, I already know so much about the disease that I wonder if they really still is treatable if you have them so long. Those critters are really everywhere. You might can liquidate a part of, but to get them all out of your body, you need a horse means to me.

Meanwhile, I have learned who you can and can not explain that you're sick. Because you do not see it on the outside. We look too good to be really ill. You will also not outside when batteries fail huh? There is no one to see how you look like. There are still people who think we are not positive set, or quickly let our heads hang, what are lazy, a lot have low pain threshold ... Who knows us really know that is not so.

Befor 2010 I was a very enterpreneurial, active and social woman, who was in middle life. My career was smooth and professional life smiled at me. But I was SICK !!! A long time. No one has ever noticed. I was nearly dead. Friends have come tell me afterwards that she really thought I was dying. That things would not last long. I looked then just off dead. My intestines were perforated, my body was himself to poison and destroy. And if I was not dead, I would very much like death liked !!! I have often wished that I would not wake up. But I had a toddler that I had to take care. A toddler who is the only reason that I'm still alive.

A toddler who is now a teenager. A sick teenager ...

Read 2563 times Last modified on Monday, 30 November 2015 19:21

Huib Kraaijeveld

Initiator On Lyme Foundation