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About Daphne1

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  • Birthday 06/25/1991

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    The Netherlands

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  1. Wow fantastic!! I hope you'll stay feeling so well!
  2. I have the same problem. When I'm really tired I'm constantly staring and can't see well. But I also don't know what to do about it. So I'm sorry I can't help you, I hope someone else can!
  3. A few years ago I was taken Equasym (the same as Ritalin, but then in extended release capsules), because they thought that I maybe had ADD (I hadn't ADD, but still had to try those medicins). I had to take a really high dosage (80 mg a day), but I get only more brainfog and couldn't think normal anymore. I don't know if my tachy was better on the Equasym, because at that time I didn't knew yet that I have POTS. But I didn't feel good when I was taken it.
  4. Hi lisette, I'm also new here and I live in the Netherlands too! And another DINETmember, Corina, is from the Netherlands too! So you're not the only one from the Netherlands here:) Welcome to this forum! Best wishes, Daphne
  5. Sometimes I get the flu, than I feel terrible, but I never have fever. I haven't had fever for years! Is that also a symptom of POTS maybe?
  6. Thank you so much for your warm welcome and all your tips, I really appreciate that! ana_22: In the topic 'Cfs and POTS' you can read exactly wich treatment i'm following. It's mainly antibiotic and probiotics. And I'm almost sure that it is the treatment that is making me worse. So I think I will stop with that treatment very soon. corina: Yes I'm still trying to do some kind of excercising, it's not much, but better dan nothing I think;) I didn't know that it's good to raise your head a little, I'm gonna try that! Thanks! Best wishes to all, Daphne
  7. Hi everyone, My name is Daphne, i'm 18 years old and I live in the Netherlands. I'm having health problems since I was 8 years old, I had almost every day a headache, often pain in my ankles and knees and often hot flushes. Gradually I was getting more fatigue, more problems with sports and more symptoms. Eventuelly I was diagnosed with ME/cfs 2 years ago, because my GP just couldn't find anything else that explained my symptoms. One year ago I also got the diagnose 'sinustachycardia and POTS'. I was treated with Verapamil for the sinustachycardia but I stopped with that because I didn't feel better. The cardiologist never did more tests for the POTS and he never gives me medicines for it. Now I'm following a treatment for my ME/cfs in Belgium by professor de Meirleir, but it makes me only much worse. Before I started with the treatment I already laid in my bed each day, but sometimes I could sit in the livingroom for a while and about once a week I could do something outdoors. But now I'm fully bedbound and can't do anything anymore. The professor says that POTS is just a secondary result of ME/cfs and he don't want to hear anything about my heart-troubles. But I think that I maybe always have had POTS and not ME/cfs. Soon I'll make an appointment by dr. Lenders, I read at DINET that he is a POTS-specialist in the netherlands. My main symptom is my heart rate. When I'm having a bad day my hr is around 100 bpm when I'm lying and goes up to 170 bpm within one minute while I'm standing and when I lie down again it drops to 55 bpm. When I'm having a good day, my hr is between 80 and 100bpm when I'm lying, and when I'm standing it is between 120 and 150 bpm. Other symptoms that I have: fatigue, lightheadedness, near fainting, palpitations, shortness of breath, excessive sweating, nausea (sometimes vomiting), blurred vision, tunnel vision, dizziness, exercise intolerance, blood pooling in legs, intolerance to heat, cold hands and feet, feeling cold all over, cognitive impairment, hyperventilation, polydipsia (I drink about 4 liters water per day), foodintolerances(diary, sugar, fructose and wheat), ear, gut and bladder inflammation, malaise, headaches, pain in legs, hypoglycemia, abdominal pain, chestpain and difficulties to fall asleep. I hope that I'll find a lot of recognition on this forum and that I can learn of your stories and experiences. Daphne
  8. futurhope, I'm sorry to hear you landed in the emergency room when you tried the treatment of that alternative doctor. Yes it's really difficult to decide what to do, I don't want to quit to soon and that I didn't give it a good try, but I also don't want to damage my body. Yes, I'll let you know what I decide to do! Daphne
  9. According to the hydrogensulphide and d-lacticacidtheory, I know a few probiotics that prof de meirleir regularly prescribes: Enterol, Lacteol, Mutaflor ad VSL-3. So i think that those probiotics don't produce lactic acid. But some of them do contain lactose. I'm diary intolerant, but I don't have problems with those probiotics, I think it's just a really small amount of lactose/milk in the probiotics.
  10. Hi, futurhope, yes it was the treatment that worsen me a lot. I'm trying antibiotics, probiotics and some supplements(vitaminB12-injections, chlorella and lipothion) sallyB, the medicins that prof de Meirleir prescribes are adapted to each individual situation. If you tested positive to the hydrogensulphidetest, you also need to get some other tests done to know of which bacteria you have an overgrowth in your gut and of which bacteria you don't have enough in your gut, based on that the professor gives everyone an individual treatment. In my case the tests showed that I have to much enterococcus, e.coli and prevotella and not enough lactobacillus and bifidobacterium. Based on that i'm following this treatment: month 1: first 8 days of the month amoxicillin(antibiotic), other days of the month enterol(probiotic) month 2: first 8 days clarythromycin, other days enterol month 3: first 8 days amoxicillin, other days enterol month 4: first 10 days erythromycin enteric coated, other days lacteol month 5: first 15 days special made vancomycin enteric coated (only available in belgium), other days lacteol month 6: first 10 days erythromycin enteric coated, other days lacteol month 1-6: also the supplements that I mentioned above. But again, this is a really individual treatment! I'm also a member of a dutch ME/cfs-forum, there are a lot of other patients of prof de Meirleir. It would be very interesting to read for the people who want to know more of prof de Meirleir, but unfortunately it's in dutch, so you can't understand it I think:S corina, nina told me that you're from the netherlands too. ?'m looking forward to your message! Daphne
  11. Hi everyone, I have POTS and ME/cfs and i'm a patient of prof. K. de Meirleir. But i want to warn you that the hydrogene sulphide test is not a really reliable test. I follow his threatment for almost 6 months now, but i only feel a lot worse than i was before. He told me i have an overgrowth of enterococcus (which produce a lot of h2s) and he gave me antibiotics and probiotics for 6 months but he never let me do the h2s-test. So this morning i did the h2s-test by myself and it was negative!! And i know a lot of other people in the netherlands and in belgium that did the test, and some of them get a positive result while they're not sick at all or didn't have a bacterial overgrowth, and some of them are really sick and get a negative result of the h2s-test too. But maybe his treatment and tests do work for some people, but i just want to warn you. Daphne p.s. I'm from the netherlands, so my english is not so good, i'm sorry for that.
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