Whether to push for early anti-biotic treatment

Hi,

Thanks so much for this resource. It has been tremendously helpful so far. I am a 30 year old woman, living in California. I am having some symptoms of sudden onset hip inflammation and am trying to figure out how to best play my cards in relation to my limited health care options and get tested/treated for early onset Lyme.

I'll just summarize my situation and then include more information about what has actually gone on below that. I am part of a city-run health access program that does not allow me very much choice around which providers I see and usually involves long waiting periods. Upon suspecting lyme, I called my urgent care clinic and was told that a) they would not test me for lyme if I did not find a tick b) they don't do a prophylaxis or treatment without a diagnosis.

While I do not like the idea of taking anti-biotics without a diagnosis, based on everything I have read, it sounds as though getting earlier treatment is best and could help avoid the need for longer term treatment at a later point. As well, since my healthcare coverage is pretty limited, I would rather treat up front and avoid the possibility of having to navigate care for later onset in the context of limited healthcare options.

Since I doubt I will get to choose my doctor or request a doctor who is capable of making a clinical diagnosis, I am trying to figure out the best way to approach this. Obviously, I could lie about having found a tick or about the shape of the rash I had, but a test might come back negative anyway. I also feel confident that if I had an idea of a specific course of early-onset treatment I would want to pursue, that I might be able to advocate for it. Is there a specific anti-biotic for a specific amount of treatment time recommended for addressing early-onset lyme?

The background is, I recently camped out in Connecticut for a friend's wedding and was not careful about ticks (walked around barefoot, etc) and did not realize until our third day that actually both of our hosts had been infected with Lyme in the last year. Later that week, I had an itchy blotchy rash near my waist that did not match the bulls eye pattern. I also never found a tick but did not look for a few days. I actually was worried it was some random cellulitis or something because I had this distinct feeling that there was something spreading that was somewhat painful and tender. It spread around my abdomen and buttock area and the sensation went away. Thereafter, I was exceptionally exhausted and had headaches and a light fever but I thought I was just fending off a flu because I was still traveling and staying up late writing for a conference I was presenting at.

Now, I'm home, it's been two weeks, and following a random burst of lumbar pain, I have extreme, burning inflammation and swelling in the front and inner edges of my hips and I can't sit or do very much. I have had acute and stress injuries before but I know this is something totally different and is not structural, but something internal. I am really scared about whether I can even work right now. The only other background is that I had an insect bite with huge red/black/blue rash that spread over my entire leg while living in Germany 15 years ago. I got home and was injected with anti-biotics and it was never diagnosed. I don't know what the story was with that, but if I had some kind of tick-borne infection at that time, I don't know if that would increase the rate at which I could get symptoms after this more recent experience.

Thanks for any advice people have about how to approach the requests around testing and early treatment with my providers. I think it will take a lot of self-advocacy!

Would you be able to go out of your state run program and pay out of pocket? I know its pricey but frankly, I think if you can find a good dr and go to an appt where they will likely start you on a protocol and order a western blot test with Igenex, it might be worth it. The two western blot tests and the minimal tests to do for lyme and cost 200$. The visit would be probably be around that too.

If you see a dr or who deals with this stuff on a regular basis, they may do your blood draw for you which helps you avoid excessive lab fees. Our lab only charged me 25$ to do the draw though.

This test is the one that showed both myself and my son being positive.

I would search the internet using something like this "Lyme Literate doctor in the _____ area".

You could even consider a dr in your friends area in CT because they have TONS of lyme out there.

Good luck and feel better soon (you will quickly discover you must be your own advocate in this illness; watch "Under Our Skin" which you can find on Netflix...it tells you a lot about why its so hard to get treated)

Please let us know how things go with your Lyme Literate Herbalist!!

Which part of Cali. are you in?

Hi, just wanted to share after getting permission to do so: the herbalist is Joshua Muscat at San Francisco Botanical Medicine Center. I'm now doing four weeks of a 3x/day formula of 5 herbs while doing 6 weeks of anti-biotics. I'm having early disseminated symptoms, but Joshua also cites having had success with chronic lyme patients.