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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. A

    Lyme on my mind

    So far, what diagnosis have you received and what are your worst symptoms?
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    Lyme on my mind

    Keep pushing! Doors will continue to slam, but it's worth the fight to have answers and direction so healing can begin ASAP!! You all can always contact Igenex Labs, get a test kit mailed directly to you. You must find a physician to sign the orders and will need to pay in advance, but Igenex...
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    Lyme on my mind

    Have you ever been tested for Lymes?
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    Lyme on my mind

    Hey there! I know you ave tried to backtrack to if you contracted Lyme, when you contracted Lyme, but my research has led me to believe that we can carry Lyme for a long time and it is in a less active, dormant phase. Given some life event, childbirth, surgery, increased stress, our bodies are...
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    Lyme on my mind

    Amen! You are so corrected! It's just the tip of the iceberg!
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    Lyme on my mind

    Hello! Please post freely and never feel that you should apologize for sharing your thoughts, lengthy or brief :) I have just been a bit off the radar, but I am most grateful that you have read my entry and that you have information to share with us here. I intend on viewing the Discovery...
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    Lyme on my mind

    It took me this many days and re-reading your post to remember that my doc did a culture sample from my nostrils. I was negative, which was good, but it just made me realize how specific testing should be and how much is overlooked. You are an inspiration for being so knowledgable and...
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    Lyme on my mind

    Is there someway to post a copy or link to the Lyme likelihood test? That is interesting to me and although I've been confirmed through testing, I think this could still be valuable to me and especially to others that are on the fence about believing a clinical diagnosis or whether or not to...
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    Lyme on my mind

    Yes, I need to add that book to my reading list. Reading is quite a challenge though. Either the words jump off the page or the material doesn't stick to my infected brain. All in due time, I presume, right? Any other advice that stands out to you that we could all benefit from?
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    Lyme on my mind

    Yes, it is a known co-infection. Biaxin is readily used to treat Lyme. I wonder what kind of reaction you will have to it? What kind of reactions do you have to other abx that you aren't able to tolerate? I just wonder about the herx vs intolerance. The last visit to my LLMD 3 weeks ago, I took...
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    Lyme on my mind

    I've not done it, but there is some value in spinal fluid in some cases. After years of searching, for me, it was like the Heavens opened and the movie was literally dropped in my lap. From there, it was all super clear.
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    Lyme on my mind

    Thank you!! I can't wait to read the manifesto and hooray!!! Sometimes it takes a physician getting sick or a politician, someone with more credibility than the rest of us that "don't look sick" and "it's all in our heads." Please keep me posted, I'd love to hear about your voyage. Best of luck...
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    Lyme on my mind

    Right, you have Burrascano pegged as far as I'm concerned Extremely knowledgeable and he has dedicated the majority of his career to the topic of Lyme and educating other doctors. I really haven't relied on Mercola much to my recollection, so I want to look over the link you shared. Remind me...
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    Lyme on my mind

    Roxie60, I've actually not read a lot of Mercola's works. The master symptom list I found is also based on Burrascano's which I find to be a very trustworthy physician and professional. By no means am I suggesting that everyone with a mysterious chronic illness has Lymes or another tick-borne...
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    Lyme on my mind

    Hi Vamah! Thanks for reading and replying:) It is all very confusing. I've been infected for 27 years, but was rather asymptomatic until 7 years ago. Yes, it is quite possible and a number of Chronic Lyme sufferers realize they have indeed had it most of their lives. By no means am I an expert...
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    Lyme on my mind

    Thank you, Pam123! It is a long road for us all, but the hope that is cultivated in receiving a proper diagnosis and respective treatment is enlightening. I feel like I have a second lease on life, yet I'm 3.5-5 years from beating this bugger :) I'm so glad that you have answers and direction...
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    Lyme on my mind

    Yes, Roxie60. I fully understand. Every medication I tried made me worse, but I know now that it's because they were all the wrong meds. Lyme feeds on Steroid treatment and we all know that steroids are shelled out for inflammatory disorders. I never once had any type of improvement with...
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    Lyme on my mind

    Hi Roxie60, Here ya go... Lyme IgG Western Blot **31 + **34 + **39 Ind **41 +++ (triple intensity!!) 58 + **83-93 Ind Igenex Positive CDC Negative Lyme IgM Western Blot 18 + **23-25 Ind ** 31 ++ ** 39 Ind ** 41 + 58 ++ **83-93 Ind Igenex Positive CDC Negative IFA, B...
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    Lyme on my mind

    Please follow my blog at www.rocasvida.com It is a wealth of information for anyone that suspects Lyme may be the culprit in their medical woes. It also encourages us all to take matters and become our own health advocates!
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    Lyme on my mind

    Thank you, S.A.! I sure hope my story resonates with others so they are able to find their way through the sea of misdiagnosis!
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    Lyme on my mind

    Yes, I will post results today! Please remember that testing only confirms Lyme's and diagnosis should be truly based on clinical diagnosis. It is quite possible that you are still positive and that is why a Lyme Literate Medical Doctor is crucial in cases like yours. I will get the results up...
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    Lyme on my mind

    Hi Justy! Thanks for posting:) If you were exposed to ticks at a young age and you are currently finding them on your dog, then the chances are very high that you've contracted a vector borne disease. I am not aware of any LLMDs there either, as I live in the US, but there is a large forum...
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    Lyme on my mind

    Yes, Xandoff! It's is alarmingly eye opening and informative. I suspect so many sufferers are misdiagnosed and the movie really drives that point home. Xoxo
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    Lyme on my mind

    Best of Luck to you!! It's liberating to discover the truth behind our illnesses. Please keep me posted as I am so curious about your journey and recovery to health!! Xoxo
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    Lyme on my mind

    Yes, Marilyn60, you bring up a fantastic point. Lyme Disease must be considered even if testing yields negative results. From my studies, I've also learned that lab results can vary from day-to-day. LLMDs will still diagnosis and treat based on clinical presentation of symptoms and medical...
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    Lyme on my mind

    Meandthecat- Is it possible that you might have been infected with Lyme's? It can mimic 350 different diseases?
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    Lyme on my mind

    My goodness!! Hello everyone! I've been rather ill since my post, but I am here now and ready to chat with you all:)
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    Lyme on my mind

    My personal blog can be found at rocasvida.com :)
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    The Naive Patient

    Please watch "Under Our Skin" a documentary about Lyme Disease. It may help you find all the answers you've been seeking for so long. Best of luck! Love, Astrid