Help me battle Lymedisease
I've been hesitating a lot about doing this, as I don't ever like to ask for money, but I am in a situation for which I need to raise awareness. And now I just dare to do so.
It all started years ago, to be precise it was around 2010 when my health started degrading continuously. I didn't think much about it at the beginning as I only experienced flu like symptoms first. But those symptoms just continued over the years, became even worse, other symptoms added to this, and I started to feel really unwell. In 2012 my situation became so bad that I wasn't really able of going out of the house anymore. I had already been seeing so many different doctors at that time but no one could find out what I was suffering from. I was given one Antibiotic after another to treat my muscle and joint pains, my tremendous headaches, my memory loss, my brainfog, my whole body inflammation, my constant dizziness, my migraines, my bowel irritation, my infections, etc etc... I was so fed up by seeing so many different doctors because no one really tried to see my body as a whole and find out a link between all those symptoms. At that time I also started to experience much emotional stress and pain due to my work circumstances amongst other things. I didn't really know anymore what to do, and I went through a really awful winter, experiencing not supporting the darkness and the cold as my whole body would just ache. I stayed most of the time at home, I didn't see friends anymore and I couldn't work properly anymore. I was a real mess.
Then in 2013 I finally went to an environmental practicionner. It was actually the first time ever that someone took so much time to understand what was going on in my body. After a 2 hour consulting session, I was left confused with so much information. This doctor actually made the correct blood tests that finally gave an explanation and a name to all my suffering. It was Lymedisease (Borreliose)! Caused by a tickbite (or some other insect as recent studies have shown that not only the tick spreads the disease). Not that any other doctor before didn't get the same idea to test on the Borrelia bacteria, they just did not do the right test. And this is where it all started.
Lymedisease is a tricky and very nasty fellow!
These Borrelia bacteria have this special caracteristic to just trick your body after some given time. So they travel incognito in your cells and muscles and can even reach to your brain, which is called then a neuroborreliose. No antibody test will ever spot them again after you have given them much time to settle in.
But in Luxembourg we only rely on the antibody test which is free of charge for the patient. If this one is negative, as it has been several times with me, they say that you are totally Borrelia free. Haha! Nice try!
Luckily my tests went outside Luxembourg, to Berlin in Germany, where they did the right test on the LTT (Lymphozyten Transformations Test), so they actually tested on the bacteria itself and not on the antibody. And the test came back positive! (This test is not completely reimbursed by the National Health Insurance, I still pay around 140 euros.)
I must have had this bacteria in my body for a very long time as I remember having had already minor problems during my adolescence. But no doctor was ever able to test on it right from the beginning. So the Borrelia had much time to settle into my body, hiding and popping out just in time when my body was weakened by other stuff that suppressed my immunesystem. It was the chance to take over my body, what it actually did.
After the diagnosis I started treatment, changed a lot about my life, quit all the negative things that didn't make me happy or harmed me in any way and that had an influence on my immunesystem. My treatment was long and very expensive! And I was lucky at that time to have enough funds to afford all of this. Nothing has ever been reimbursed by the luxembourgish healthcare system (CNS) (well maybe just 1 %). Not my blood tests, neither my doctors appointments, as he takes much more time than a normal GP, nor my medicine. I could not take any Antibiotics anymore as they wouldn't work, so I started an alternative treatment with lots of nutritional supplements and herbal medicine as many other patients with lymedisease do too. At first I didn't understand it was too late for the antibiotic treatment which is only really effective right away after you have been bitten by a tick. So I was very suspicious about the whole herbal treatment and didn't have trust in it either as it was so really expensive. No one in my surroundings understood either how I could spend so much money on herbal medicine. But already after months I started seeing improvements, my health improved slowly, my blood tests improved and also due to my lifechanges I managed to come out of the dark and have a real life again after so much time not knowing what was going on.
Despite all this I've spent thousands of euros to come anywhere close to a real health again! In one year I've spent more than 8000 euros on treatment and care! All on myself. I started being very dissappointed by the luxembourgish healthcare system and lost my belief in it. It might not be one of the worst on the planet, but if you have something like Lymedisease, you are kinda screwed, as I guess it is the same in many other countries too. I started to inform myself a lot, read loads of studies and books on lymedisease and stories of fellow sufferers. We all go through the same thing and experience the same obstacles. During my odyssee I have even met doctors who told me that Lymedisease doesn't exist or that they have no clue about it at all! I could write a whole book about the Lyme problem here right now but I won't. If you just google, you will find out much by yourself what this disease is all about!
So to come to a conclusion, my health became better and better and I was able to function normal again for about 2-3 years. But when you have a chronic disease like that, you have to take really care of yourself. You actually have to do anything to not weaken your body's immunesystem as this one has become really delicate and prone to external influences. And there are many external factors that can affect the remaining borrelia bacteria and you just start to become a really sensitive person. Fact is that the bacteria will stay in your body forever, you cannot really eradicate them anymore. It is an illness that becomes chronic. There will always stay a little part of it in your body that slumbers until it's been given a new chance to pop out.
And that is exactly what happened to me recently!
I still haven't found out why but I am back on the Lymeside! After I have experienced some lymelike symptoms I went to see my doctor again and the tests confirmed the new borrelia activity in my body. So here I am again, going back to treatment. Many factors play a role but we haven't found out yet what it was.
I changed my life completely and I chose life over that stressful and unnatural work environment that I experienced many times before. I chose a very balanced life now, with a work that fulfills me and that is a 100% me. But which comes with a finanicial difference that makes it unable for me to afford my treatment.
So that's why I need your help!
I've already done much research over the last years. I've tried many different medecine and will now try as much as I can to get rid off the bacteria again and well other things that may favour its rise in my body.
I even might consider treatment in Germany that is not reimbursed either by the CNS. As you see lyme is a pretty nasty and complex story and pretty difficult to understand and explain to people who haven't come in contact with it yet.
Please help me to raise funds for my treatment!
And above all this I hope to raise awareness on how you cannot rely on the National Healthcare System when you have a disease like Lymedisease that is not really recognized by the government. Who helps you pay for your treatment when you are unable to work? As long as our National Healtcare System doesn't consider Lymedisease as a disease, and as long as the work of environmental practicionners aswell as herbal and alternative treatments find no value in this system, there will be many many patients like me suffering, and many many years will go by until a person is finally diagnosed and treated.
I want to have a normal life again, a life in which I am not constantly reminded about my precarious health, a life in which I can feel good and this days after days without feeling unwell, a life where I can be free of all that pain and sickness.
Thank you very much for your support and please help to raise awareness! It is very important that this disease gets understanding and acceptance, so we can get help, above all the financial one!
Much love and hope!
>> Recent article about Lyme and my case in Luxembourg
>>Very good description on what is Lymedisease by Dr. Beatrice Milbert (in french)