Behcets Disease Diagnosis and new eating/exercise. Anyone else here who can help and encourage me.

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Lorraine717
Lorraine717 Posts: 1 Member
in Introduce Yourself
Hello everyone,
I don't usually ever talk about personal health but I'm kind of at loss. I've always been an incredibly active, fit, well rounded healthy person. I worked 60+ hours a week, exercised, trained in sparring in Taekwondo, did Zumba, gardened avidly, etc. Not much slowed me down, not even an ankle reconstruction after busting it up in Taekwondo. 3 1/2 years ago, I started getting fatgued and weird symptoms. Nothing consistant or in any pattern. Slowly I accumulated tests and doctors all with puzzled faces. 2 years ago they diagnosed me with Neuro Lyme from an unusual species they said. 45 days of antibiotics that was supposed to be 30 and I actually was feeling notably better for about 3 months after. I then started getting sick again and ruled out a Lyme flare up. Over the next year I went through lots of doctor visits and tests to not much avail. Only being hospitalized for Thoracic syndrome, seizure, etc. Lots of therapy and massage and clean eating seemed to get things to calm down to a tolerable level. Then got another tick (not engorged but embedded) and was very very sick and was tested positive for common form of Lyme. Once again Antibiotic treatment for 30 days. Main symptoms associated with Lyme disappeared mostly and was doing well for roughly a month when the flares got so bad it wasn't funny. Got 1 of final symptoms they were watching for then diagnosed me with Behcets Disease/Inflammatory/Rheumatoid Arthritis. I've been on Plaquenil and Naproxen for 6 months. I'm getting break through flares and generally always painful and fatigued. Lots of question asking and reading led me to trying AIP (Autoimmune Protocol) Paleo.
I'm hoping this helps. I'm still working and keeping active despite how I feel. I'm pretty stubborn.
Does anyone else have suggestions, tips, exercises or even experience with this disease? Noone I know has or has had this. I appreciate any feedback or assistance with this. Thank you!

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  • 1coolmofo
    1coolmofo Posts: 65 Member
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    Lorraine717 wrote: »
    Hello everyone,
    I don't usually ever talk about personal health but I'm kind of at loss. I've always been an incredibly active, fit, well rounded healthy person. I worked 60+ hours a week, exercised, trained in sparring in Taekwondo, did Zumba, gardened avidly, etc. Not much slowed me down, not even an ankle reconstruction after busting it up in Taekwondo. 3 1/2 years ago, I started getting fatgued and weird symptoms. Nothing consistant or in any pattern. Slowly I accumulated tests and doctors all with puzzled faces. 2 years ago they diagnosed me with Neuro Lyme from an unusual species they said. 45 days of antibiotics that was supposed to be 30 and I actually was feeling notably better for about 3 months after. I then started getting sick again and ruled out a Lyme flare up. Over the next year I went through lots of doctor visits and tests to not much avail. Only being hospitalized for Thoracic syndrome, seizure, etc. Lots of therapy and massage and clean eating seemed to get things to calm down to a tolerable level. Then got another tick (not engorged but embedded) and was very very sick and was tested positive for common form of Lyme. Once again Antibiotic treatment for 30 days. Main symptoms associated with Lyme disappeared mostly and was doing well for roughly a month when the flares got so bad it wasn't funny. Got 1 of final symptoms they were watching for then diagnosed me with Behcets Disease/Inflammatory/Rheumatoid Arthritis. I've been on Plaquenil and Naproxen for 6 months. I'm getting break through flares and generally always painful and fatigued. Lots of question asking and reading led me to trying AIP (Autoimmune Protocol) Paleo.
    I'm hoping this helps. I'm still working and keeping active despite how I feel. I'm pretty stubborn.
    Does anyone else have suggestions, tips, exercises or even experience with this disease? Noone I know has or has had this. I appreciate any feedback or assistance with this. Thank you!

    I battle with chronic lyme,disease. The best thing I did was change my diet and find a Lyme literate internal medicine Dr. I travel a from Austin to Houston to see her but the treatment plan has shown improvement. I have been on varing antibiotics in strategic doses and intervals for a year and a half. finally my treatment plan is steering away from them and twords holistic methods. Feel free to add me and we can share experiences and encouragement.
  • Fuzzipeg
    Fuzzipeg Posts: 2,300 Member
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    I have a European pen friend who's daughter has chronic Lyme, she has been hospitalised several times with it, once it was induced by a failed relationship. She's doing better now five years on but had to give up her stressful job she loved. Lyme is very nasty because the virus can hide in the body for years. It can surface similar to the way the chickenpox virus does causing shingles after stress, or at an older age. They hide in a similar way but the outbreaks are different.

    She found digestive microbs helpful. Microbes are vital to digestion preparing our food for ingestion. Many are killed off with the problem the antibiotics are taken to eliminate which can leave scope for the least helpful to get out of control as the natural balance is disturbed. In the UK there is one particular product designed to help those on or having used antibiotics. I don't know if it is available else where. It may help for you to read in to digestive microbes because there are a very large number available and some are more beneficial than others.

    All the very best.

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