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SheilaH

559d

I am new here and have battled Lyme disease and so many more health issues caused by the lyme. I now have active systemic lupus attacking my organs - lungs especially and I am scared. Want to hear if anyone has done anything to help stop the damage. Like stem cell treatments or Psilocybin mushrooms are a few I am thinking about trying

Top reply
    • Jrsb511

      507d

      @SeizingSuccotash good pre and orobiotics have helped keep my lyme at bay along with laser light therapy

    • Msgicheyaya

      558d

      I first got Lyme in 2001 was treated with 6 weeks of doxy. I got a second 2nd separate case of Lyme a year later and treated again. Since then I have added a new dx of some kind. Fibro was early on 2001 actually the last most devastating has been RA. I def agree that Lyme hides out in cells and comes out when your weakest. It never leaves you. Now with this Covid and Omicron era it is a really dangerous time for the Chronic Illness Community.

      • SheilaH

        536d

        @Msgicheyaya ya I got a bad case of COVID and my lungs have not been the same

    • SeizingSuccotash

      559d

      I got Lyme disease in 2015 and didn’t know for a week. After I was finally treated with a round of antibiotics I was fine for a bit. And then 6 months later, in winter, I began having seizures, extreme body pains and incredible mental fog. Along with other sporadic symptoms like lung problems and heart issues. I was getting any help from the doctors I saw, and ended up finding a doctor 2-3 years later that was an allergy specialist interested in chronic Lyme. He ran a bunch of blood tests and saw I also had a mycoplasma infection in my lungs. And together they cause neurological problems. I am still suffering from my seizures, but I found out there was also a genetic basis for that. From my experiences Lyme sorta changes you forever - switches different genetic switches on. I was treated with something called LDI, or low dose immunotherapy, and it was one of the only things that helped with my body pain. SNRIs like cymbalta helped me for a period of time, too. Though symptoms still pop up all the time for me. They say Lyme hides in your cell walls to camouflage itself from your immune system, and then comes out and attacks when you’re weakest. It is shaped like a spiral, or a tornado, the symbol of spontaneous activity/a type of chaos. And though it’s been tough, I think it’s kind beautiful :/

      • Jrsb511

        507d

        @SeizingSuccotash good pre and orobiotics have helped keep my lyme at bay along with laser light therapy

      • SheilaH

        536d

        @SeizingSuccotash so sorry you are going through all that glad to hear you are a bit better but yes it is a forever battle. The keto diet is what I am trying to get back on which helped me the best out of all the things I tried and there is a lot!!! I was on LDN low dose naltrexone…I can’t remember if they tried LDI but it sounds familiar. Thinking about trying stem cell replacement…heard about that?

    • SimplyWellRenewal

      559d

      It can be very scary when body is attacking itself. Mine was attacking the myelin lining in my brain and I jad 12 lesions. 1 was half foliar size. My functional nurse/nutrionist taught me to work on gut, add good prebotic and proboitc, healthy fats, vitamin d, stem cell activation were some that have been very helpful on my journey. I have been symptom free med free 4 years now. And all the myelin lining is restored. No leisons. Don't loose hope it can get better Body can be taught and do amazing things.

      • SheilaH

        536d

        @SimplyWellRenewal I do take prebiotics and probiotics, vitamin d3, along with so many more vitamins. My labs showed I was the highest level for inflammation (supposed to be 1:250 or close to that and mine is 1:2500 something…what ever the highest number is before they stop counting) I eat a lot of healthy fats and Limit my carbs. What is the stem cell thing you are talking about? I was thinking about having stem cell replacement which is very painful. Is that what you are talking about. I went on keto and was so much better a few years back most of my pain was gone. Trying to get back in ketosis. Thanks for letting me know what worked for you.

        • Jrsb511

          507d

          @SheilaH I take turmeric for inflammation it's helped alot cause you can load up on it and its easy on the stomach

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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