POTS stinks!!
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I'm actually the mother of twin girls suffering from POTS syndrome caused by the Epstein Barr virus. They're currently on supplements because the regular md told me they do not give anything for Epstein Barr. We use a holistic doctor. Up until now people surrounding them have been very understanding about their situation, but recently, I guess because they're not getting better at the rate some people think they should, people all of a sudden have become critical. Do any of you have issues with this? I'm trying to do what's best for my girls!!!
0 likes, 8 replies
matt2015 hopecharity
Posted
hopecharity matt2015
Posted
Yes they have officially been diagnosed with POTS. There is no clinic and the medical doctors here will not do anything to help. They are now under supervision of a holistic doctor who also went to med school. He has done more to help them than anyone. They are gradually getting better. He's not a snake oil doctor he actually knows what he is doing. My question was about handling family and friends who do not choose to understand or research but well give "advice".
matt2015 hopecharity
Posted
It may be worth signing up on the dysautonomia international forum as that is a much more active community for POTS etc. Some may even be local to you and I have seen a number of discussions on there about dealing with family and friends.
I have lost many a 'friend' since diagnosis but it really only proves they werent a friend in the first place. On the flip side I have also grown closer to some true friends.
Have a look on the site for the nearest dysautonomia specialist too. Even if it involves travelling it may be worth it to get as much research backed treatment to get the chaps feeling as well as possible as quick as possible.
What treatments have they tried?
All the best.
littleme1969 hopecharity
Posted
Im afraid that its part of chronic illness. Most people will tell you the same who have lived with chronic illness for years. Friends move on and find new healthy friends, people are often critical of things they dont understand. Invisible illness is the worst. People dont want to hang ot with the sick person
Most of us end up on here finding friends and people who understand as they going through it themselves. You can try and educate people .. sending links to websites etc so they can see for themselves . At least they have you and each other which is more than alot of people have.
hopecharity littleme1969
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They have already lost their "best friend" which devastated them. The thing is most of the kids their age are very understanding its the adults who aren't.
cate79299 hopecharity
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The Epstein-Barr virus is very common in the 15-25 year age group. It is also known as glandular fever or "the kissing disease". Up to 95% of people have been exposed to this virus. The natural essential fatty acids in coconut milk helps to fight the active virus so this should be included in both of your daughters diet. As instead of using cow's milk substitute coconut milk with their breakfast, baking and even fruit whips; and up to two litres of diluted fruit (eg. blackcurrant juice) and vegetable juices(eg. carrot, pineapple, tomato, apple, celery) or vegetable soups for the vitamin C, beta carotene content and other nutrients. Also vitamin B's complex, preferably a slow release tablet and up to 3,000mg of Vitamin C. A really good healthy diet is critical in the recovery of glandular fever. One of my nieces had this at 17 years old while still at school and recovered quickly following this diet. If not coconut milk, you can also take 500mg of Efamol, three times daily. Which you can purchase from a Health food store or naturopath.
hopecharity cate79299
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cate79299 hopecharity
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