Tests and more tests but just get worse.

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i was diagnosed with Lyme disease and also Sarcoidosis. But just keep getting tests for other things. The latest was inner ear. No report on that yet. Then I had a heart arrhythmia. So I am wearing a monitor. No meds for any of this. Ready to give up.

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  • Posted

    Linda, my wife has had chronic lyme disease for several years now. Before she was diagnosed, she thought she was dying. Do not give up. Make sure you are put on a dosage of Doxycycline rapidly. If you are not prescribed this, and there is not a valid reason for not prescribing it, find another doctor. There is hope. It will get better. One more thing. Lyme disease manifests itself in all kinds of symptoms. Including heart, ear, stomach, body aches, you name it. Get this thing treated as soon as possible.
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    • Posted

      Thank you for your reply. When I was finally diagnosed I was given 3 weeks of docs and I felt great for a few weeks. Then it came back and continues to get worse. My pc and neurologist know about my Lyme and Sarcoidosis but rather than treat that they keep running tests for more things. I am depressed and have anxiety but I can't take those meds. Between those two diseases, lyme and Sarc, I have all kinds of symptoms.

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    • Posted

      The 3 weeks of dox is the standard for people initially infected with lyme. But unless the treatment starts immediately the lyme will already have invaded a lot of your tissue and it will be difficult to get out. But not impossible. Make sure you're seeing a doc who "believes" in chronic Lyme.

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    • Posted

      Yes, I realize untreated Lyme does cause a lot of problems. I think my neurologist believes in chronic Lyme. Unfortunately she is out of the country and I won't see her till the end of August.

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  • Posted

    If you tested positive for Lyme with a blood test then you need to get on antibiotics immediately. Doxy is the standard that is initially provided. My biggest lyme issue has been noise sensitivity. Loud noises made me jump out of my skin. I also have very bad tinnitus. The noise sensitivity has started to show some improvement, but it is up and down. One week was great. Then it started again. Today not as bad again. I am 4.5 mos off the Doxy. I was on that 28 days. Dr. won't give me more abx. Told to wait it out. Hoping for the best. Today I took a nap and finally feel into a deep sleep. Haven't experienced that since Oct. The recovery is slow.

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    • Posted

      thank you for your reply. I took a three week dose of docy and was much better but then it came back. I think my biggest issue is dizziness but I have noticed I am sensitive to noise and light.plus a lot of other issues. Just seems to get worse. I have been dealing with this for at least 15 months. I wish you the best in your recovery.
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    • Posted

      You have been dealing with the symptoms for 15 mos. since finishing the doxy?

      My research and reading on Lyme is that the lingering symptoms are due to inflammation and damage done by the lyme that is taking time to heal. I haven't read anything compelling that supports that it is an on-going infection. Doxy is a serious abx. It will kill the infection. It also kills Erichilia (sp?). And Babesis (sp?) basically runs it course so they don't treat or test for it.

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    • Posted

      Tickfighter,

      I'm sure you realize that what you've said is very debatable. Chronic Lyme is becoming much more acknowledged..... and not merely an inflammation. Again, you might be right. But it's very debatable.

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    • Posted

      My symptoms started in March,2016. I was treated with docy in July, 2016. I had a few weeks of relief from the symptoms, then they returned. Maybe it is something else but it is very much the same as I went thru before.
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    • Posted

      It's controversial, not very debatable because the studies show that long-term treatment with abx is no better than placebo. That doesn't mean ppl aren't suffering. They are. I am. I am just not convinced that there is on-going Infection. All the studies I have read show long-term abx doesn't improve the situation. And long-term abx is very bad for the body. And that isn't debatable. But, I completely understand the sensitivity on the topic because ppl are still sick and they think it is lyme in cyst form or hiding out in the body.

      Everybody should do the research and pursue the treatment that they feel is best for them. And I respect that.

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    • Posted

      I am sorry it has gone on so long. They doxy is anti-inflammatory as well as an abx so it isn't unusual that the symptoms resume after treatment. Also, some relief could've been due to the placebo effect. With all that said, 15 mos. is a long time. I don't know what is going on. Possible it is lingering lyme issues or something else. I truly hope that you find some relief. God bless.

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