Back after a break

Hi friends,

It's been awhile since I've been here, a lot has gone on. I see a lot of new faces but a lot of old ones, too.

To quickly summarize, I'd been to hundreds of doctors in the past looking for answers to my symptoms, no one could help. I went to 2 different LLMDs who diagnosed me with Lyme and Bart through their testing (I come up negative in traditional testing). I was hesitant to start antibiotics because I felt like they just threw them at me and wanted my money. Anyway, last fall I was hospitalized with a kidney stone and infection. As a result, I was on antibiotics for about 3 weeks, some IV, some oral. I noticed while on the meds that my body pains, particularly in my hands and feet, disappeared. Even tooth pain. It was wonderful. I felt pretty good pain-wise for the next few months. Just a few weeks ago it seems that the foot pain and nerve pains in my hands are returning. I'm not happy about it. I'm wondering if a few weeks of antibiotics could've helped me for that long? However, my other symptoms still have me so upset, like the weight loss and inability to gain as well as hair loss on my head and body. Had anyone experienced weight loss with Lyme? Will it ever get better? I'm so self conscious. Lastly, does anyone know if a natural route with herbal tincture can cure Neuro lyme?

Sorry for all the questions. Just needing some support. Thanks so much for reading. Be well

Hi Girlie,

Thanks for writing. I did get a full appointment but i didn't feel like i was heard. It seemed like he had it in his mind that he was going to treat me for Lyme before even talking. He kept cutting me of and saying he wanted me back in the office for several visits, etc... I know that doesn't sound abnormal necessarily, it just didn't feel right. And at $700 a visit, I got scared. I just can't afford that.

May I ask, would you say that one medicine over another helped you? Any success with herbals?

Thanks so much

In regards to hair loss - have you had your thyroid checked? It could be a vitamin deficiency as well.

Primary Care Physicians have a difficult time diagnosing Lyme. PCP's use the CDC guidelines to diagnose. CDC requires a certain number of reactive bands (5, I think) to give a positive Lyme diagnosis. They don't look at the band numbers. Some bands are Lyme specific. You may have had a band/bands that are Lyme specific, without meeting the CDC (5 reactive bands) requirement. In the eyes of a regular physician, you tested negative. My husband's PCP told him he wouldn't diagnose Lyme unless the patient has at least 10 reactive bands. That's five more than the CDC requires. Crazy, huh? That could be why your LLMD told you have Lyme and your regular doc said you were negative. I would trust the LLMD. It happened to me. I only had three reactive bands with my "negative" test done through my PCP. However, one of the bands "could" be Lyme, but it wasn't Lyme specific. With further testing, it was discovered that that one band (41), in my case, was Lyme. I have Borrelia Burgdorferi & Bartonella.

However, I do understand you concern about cost. $700 a visit is outrageous! YIKES! I pay $195 a visit, and I get $126.75 of it back through my BC/BS insurance. Is there someone else in your area that may be less expensive? Have you explored any Naturopathic LLMD's?

I was considering a Lyme specialist but as you say, it was just too expensive. $800 for the consultation and $365 per visit and paying for meds out-of-pocket since they do not take medical insurance. Plus it was almost a two hour drive each way. But I am fortunate to have a primary care doctor who reads up on Lyme treatments and works with me. Still, I am getting tired of antibiotics because the Lyme comes back. I am told I now have chronic Lyme. It goes into a sort of remission and then comes back. I read dr. Bill Rawls' book and hw went herbal after antibiotics did not work for him any longer. But it seems very complicated to take all the herbs he recommends. Not sure what route I'll take at the moment. But latest blood work showed positive for Lyme and I did not go to the country this year yet or have any exposure to ticks.
Hoping you feel better.