Newly diagnosed... advice??

Hello,

I was diagnosed with lyme about three weeks ago. I had developed pins and needles in my hands and feet that would not go away. I woke up one night feeling like glass shards were going through my veins. about a week after that started I went to the ER after losing feeling in half my face.. ER found nothing and sent me home. I went back to the ER a few days later with horrible chest pain, where they ran some more blood tests and did an EKG.. sent me home. Went to my primary and he immediately dismissed it as stress, despite me insisting it was not. A third ER trip ended up being the winner. I got a great doctor, who did the lyme test, came back positive a week later.

I also have ringing in my ears, muscle spasms, and some fatigue. The fatigue is not too bad, I just always feel tired and I run out of energy pretty quick.

My concern is that the hospital put me on 3 weeks of doxycycline 100mg twice a day.. and that's it. My pills run out tomorrow. I feel better but certainly not 100%. I managed to get into a neurologist since my symptoms are CNS related, he stated it could be a false positive and he's doing some more tests this coming week, MRI & echocardiogram. I felt better that he agreed with me if he does feel it's lyme I need IV antibiotics. I really do not think it's false positive? He was skeptical since I did not have any flu like symptoms or felt sick prior to developing neurologic symptoms. I live in New England so it's quite likely I could have been bit and not known it. And based on the fact the first 4 days of antibiotics were hell, and then I felt progressively better, I feel as though they were working. My white blood cell count was also elevated. I am also seeing an infectious disease doctor in a week who works with the neurologist.

Any suggestions on what I need to know? I want to make sure I ask the right questions so I get the meds I need. I see my primary again this week but I have 0 faith in him, since he wouldn't listen the first go around when I KNEW I was sick. How often are false positives seen? I would appreciate any advice. I would assume the infectious disease doctor is probably my best bet?

Thanks,
Kc

Post Edited (Kckg89) : 3/28/2014 9:29:20 PM (GMT-6)

Yes I agree, its not too often you get a false positive in Lyme, they do happen but based on your symptoms I would say you were positive. I also recommend and Lyme Literate Doctor, your symptoms sound CNS based which may require more aggressive treatment and you may have co-infections which will need to be treated before the lyme will go away. Aggressive treatment sooner rather than later is vital for healing Lyme. Good luck :)

Have you read the first thread at the beginning of the forum? Remember to detox, detox, detox. You must find an LLMD. I would go with MD first, and then you can always search for the LLND later.

Start with the supplements recommended for Lyme.

If you haven't found an LLMD yet, you could order Samento and Burbur online, and start there, but VERY slowly, NOT the way Cowden recommends it.

Keep looking for LLMD.

Margaret

I had the pins and needles, lost feeling on left side, ringing in ears and fatigue. The disease follows an unpredictable progression but tends to get worse if treatment is stopped abruptly. The symptoms will change over time. Then you will think you do not have a symptom any more only to find it returns several months later. If you can dump the ID and Neuro, do it. I doubt either understand the disease or will help you. And if they do they are considered rare. There are strains of Lyme circulating around now that are not even detected in the tests. Try to find a Lyme literate medical dr. In the short term you can try a walk in treatment center for antibiotics, esp if you tell them you have exposure.

Thank you, someone my mom knows apparently knows a lyme doctor about an hour from where I live so that is an option. There is also a local acupuncturist who had lyme herself and specializes in treating it so I figure that's worth a shot too.

I guess they think I'm false positive because the only band that I was reactive for was 41. Now after 3 weeks of meds I'm testing negative completely. I felt about 90% better on the antibiotics and now that I've stopped my symptoms are slowly creeping back, mostly the muscle spasms. I also tested negative for any co-infections.

It's not easy is it? The infectious disease was useless. Nice, but useless.