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Positive For Lyme


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Thanks to the topics on this forum I was encouraged to accept my naturopaths recommendation for a Lyme test. I was reluctant to spend $400 on the test, but I took the risk just I could know for sure one way or the other.

My iSpot test came back equivocal and my Western Blot came back positive. The year I had the tick bite (I was about 7) was the same year as a head injury and the progression of my symptoms. Maybe both are the cause, but at least I have something I can try to treat at the root instead of just symptoms!

I know Lyme is a hot topic right now, so I wanted you all to know there is one more POTsy with a Lyme dx.

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I'm misdiagnosed with POTS and have been sick for 5 years and the last 16 months was bedridden by what I was told was Pots. I have now been diagnosed with chronic Lyme disease. I have been going to the wrong doctors and many many of them. The symptoms we have lead us to cardiologists and neurologists who for the most part know nothing about Lyme and don't even think about it and if they do they give you the standard Lyme test that I think is only 30% accurate (which I have taken 3 times and had 3 false negative results). in my opinion IGenix is the test to go with.

Every symptom of Pots can be a symptom of Lyme disease imo, which makes sense as I do believe that POTS is only a symptom of symptoms anyways.

I think Lyme is not curable but can be treated and you can get better! Medications used to treat Pots symptoms might not be good for Lyme and I think exercise can make Lyme worse! I hope this even helps 1 person!! I don't have Pots so I am not on here much but you can email me anytime @ Hippychic258@aol.com

Edited by corina
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Thanks for link Issie. It was too many pages for me to sort through, but what you said about the Protozoa and diet makes total sense. My first year of college I was a gluten free, vegan and I saw a personal trainer for a while. It was the best I ever felt. It ended when a GI doc told me he saw no reason why I should be off gluten. After that, I had a hard time explaining it to my friends so I gave up.

I am feeling so broke from doing all of these tests, so I am excited about just trying to change my diet again! I also have a personal trainer, which is imperative. No matter how broke I am, I need accountability to exercise.

Good luck, I hope this works for us!

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The vegan diet change has been a big benefit. The more I researched it I realized how it plays into the immune system and why some things would work better for me. With the type of protozoa I have - the doctor thinks that fat feeds it and for me that is one of the hardest parts of the diet. But, I have gotten used to that. It's funny, when I first started this - my husband was really skeptical. Now, he tells others that they should do my diet. He's on board and is a big support for me with it. I actually lowered the severity of my chronic kidney disease with this diet. I went from being in stage 3 down to stage 1. I still have to be careful what I do because of my kidneys. But, just that improvement in a few months time is unbelievable. Most doctors think that once you have kidney disease it is downhill from there. I'm expecting that all my levels will start to improve with more time.

There are lots of ups and downs with the treatment. Times where you feel near "normal" (whatever the definition of that is) and times when you think you will never "recover". But, I'm seeing more good days then bad now and intend to stay on this path. Hope it works as well for you too.


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My doctor also thinks that Lyme or protozoa infections play a big role in POTS. But, I'm not sure that it is the complete "cause" of it, for me - but, if you're positive for it ---it would only make sense that treating it should improve things for us. I'm encouraged so far and find myself improving with my diet change and treating this with supplements and meds. I'm mostly working on my immune system and getting it to recognize things that it is letting slip by and working on inflammation. It's a slow process and takes time. But, I really feel like I'm getting better. Not totally well. But, any improvement --I'll take.

I've had several PM me and let me know that they are also positive. So some of us are finding this to be an issue for us. Also, the DINET info pages says that Lyme has been found to be a possible cause of some dysautonomias.

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