When do you really know that you have Lyme?

Hello, Recently I got my IgeneX results back. One test says I am positive based on their standards. I know all about the issues with the CDC standards etc. What I found odd is that I did not test positive for the coinfectors as far as I can tell. That seems a bit unlikely no? At this point I have a Fibromyalgia dx, Optic neuritis dx and this one positive IgeneX test. I already treated the Optic Neuritis with little effect. Eye doc says we need to figure what is going on in my body or the eye issues will continue... I also understand that Lyme really is a clinical diagnosis but thus far I have only found 2 LLMDs. The first one thinks I have MS even though 2 specialists have said I don’t. The second one I will see on Monday.   I feel like the only way to know if you have Lyme is to treat for it and see what happens. Am I off the mark here? I would love to hear from you all on this especially if you have managed to beat Lyme.     Thanks!

Also...not sure if you've heard of this, but once I got bit I would feel absolutely AWFUL 3 days before, leading up to the full moon. I'm told this is parasites/babesia, but I never had an issue with it until my tick bite so I know it's all related.

HI Akkami, I'm pretty sure you know my journey.

You had some Lyme specific bands that were positive, did you? If so, then that is all the scientific proof that's needed. There's only one way for disease specific bands to show up in your blood work and that's if you have the disease.

But if you are wondering how I knew in my body that I had Lyme & co-infections when I wasn't testing positive to any of them? It was because I was a fiend with my researching what was going on in my body. I could feel I was losing a battle of some sort. Lyme and co-infections were the only things that fit. Every other possible thing left a lot of symptoms out (so they couldn't be explained) or I didn't have enough of the symptoms or key symptoms were absent.

I even had one doctor yell at me in his office because I refused to start on MS meds that day, but I just couldn't shake the feeling that the MS diagnosis didn't explain enough of my symptoms.

I'd been sick for years on some level with fibromyalgia, then, in Feb 2013, I was in the hospital with a viral illness of unknown origin. I've been super-sick ever since. It's a whole new level.

Thanks. You're right of course and I am going to do what I need to for Lyme. I'm just worried about my job. I'm already on thin ice. But that's how it goes I guess. I'd rather be healthy and unemployed than be like this for the rest of my life.

Post Edited (Akkami) : 2/28/2014 3:27:24 PM (GMT-7)

Akkami - as Traveler said, if you have some positive bands - that's all the proof you need. I am currently being treated for Lyme, but based on a Clinical Diagnosis only. My quest labs came back negative, and I am currently waiting on the Stonybrook Labs out in Long Island to come back. My LLMD said that even if those come back negative, she is still treating me. You didn't mention your other symptoms. My LLMD said that the two biggest clues to Lyme are 1- your sickness goes in cycles. So try to remember when it started and how it progressed (for example, for me I had flu like symptoms, then 4 weeks of severe anxiety/insomnia, then 4 weeks of cystitis (which is uncommon, but can happen with lyme), then the muscle and the nerve stuff started. The second clue is related to what Wilson said - it moves around your body. Just keep in mind that a source says that Lyme is the most misdiagnosed disease by Drs. Yes, Fibromalgia like symptoms can stem from it, which is why I was initially diagnosed with Fibro as well, but didn't buy it. Why I didn't buy it - bc where would it have come from?? Think about it - Fibromyalgia has to come from something - your body doesn't just decide to become xtra sensitive to pain all of a sudden. That's my own theory - and experts say that a traumatic event can trigger it. I would bet that if every single person in the country who has been diagnosed with fibro got tested for Lyme - a good percentage would come back positive!

So what I did was, I convinced a walk in clinic dr to write an rx for doxy, and that is how I found out I was right, bc it started to work - so you are not off the mark at all, go with your gut instinct. Just make sure you are under the care of an LLMD - I started the doxy knowing I had an appointment in two weeks.

Lots of Luck to you and let us know what happens!!!

Chapelle: Thank you for the info.
Todd: Thanks for the link. I will share it with my new doc who seems much more open minded than my previous ones. The eye doc that dx me with optic neuritis is convinced I have MS so there is no cahngng his mind.