New Here - fairly recent diagnosis and looking for advice

Hi all - stumbled across these forums and wanted to say hello! Being the stoic type I rarely reach out for help, but quickly realizing this isn't something I'm going to beat alone. So a bit of a (long) backstory, was officially diagnosed w/ Lyme on 11/1/16 using EIA and WB tests, although maybe I can't use the word official with these tests as there seems to be a lot of false positive/negatives. I was pretty convinced though seeing as I had quite the rash to match. If anyone is interested - /goo.gl/photos/rjd5gMkVmXCZQRa26

I believe I was bitten back in late September when I was vacationing in Sweden, but never saw the tick or any bite marks for that matter. Returning to the States I began noticing a reddish mark on my shin but just kinda wrote it off as a bruise. Wasn't until a few days later that I woke up in the middle of the night freezing cold and sweating profusely that I knew something was amiss and headed to a local clinic that following morning.

So what do I get diagnosed with .. shingles, even though I had never had chickenpox. Not trusting the clinic doc I moved on to UCSF, who 2 doctors later were convinced I had cellulitis and was put on a heavy regimen of Keflex and Septra .. neither of which did anything other then make me feel crumby. Wasn't until a totally unrelated dermatology appointment that the doctor recognized the bullseye pattern and the rest is pretty much history. Was put on 2 weeks of doxy and told to go on my way.


So here I am today, low energy, brain fog, trouble sleeping but worst of all is the cognitive impairment. I have a fairly demanding job and just feel .. dumb, I can't really explain it... trouble finding words, trouble remembering things like passwords. UCSF has been darn near useless, so I'm hoping to find someone in the SF bay area who could possibly treat this. Also reading great things about the Buhner protocol. Seeing as it's a fairly recent infection is there a preferred route people would suggest?

Also probably stupid question but do European ticks carry a different strain of Lyme? Is it treated the same?

Cheers

Thanks Girlie! will shoot you an email.

Thanks for the welcome Krimpet. Yeah the rash was pretty nasty, painful and hot to the touch, very uncomfortable experience. I see how early on doctors missed the bullseye shape, but now looking back at the pictures it's pretty obvious ..

I sent you an email..jrpsf...(about something else)...and then realized I should have asked you to contact Blinken- glad to see you read this thread...thanks.

Welcome ...yes borrielia garrini is thought to be highly virulent and extremly neuro...consider bvt rife and herbal adjucts ..

Hi Blikken!
Welcome to our community! I'm glad you found us and chose to reach out.

You have been given some great information so far, so I have little to add other than to say that yes, there are some different strains in different parts of the world, although Borrelia burgdorferi is found world wide, and is usually the one that produces the bull's eye, although I believe Borrelia miyamotoi does as well.

Keep asking questions!! We are here to help as much as we can!

Be sure to keep asking questions! It will help with your understanding and with helping to understand that we are in this together and this community is here to help as much as we can.

Hi Blinkken,

I also live in the Bay Area and have recently switched to a LLND in San Rafael, who has been really helping me. I would be happy to give you their info if you're interested. I also have some other recommendations I could pass along. Send me an email if you'd like to hear. Good luck!

itsnotjustlyme said...
Sorry to hear about your post-antibiotic experience. It is not uncommon for people to do the two weeks of Abx only to find that their symptoms return. It's still unclear if this is due to Post-Lyme, or Chronic Lyme, though a lot of us here believe Lyme can truly be a chronic problem is not treated thoroughly. Me, I think it takes more than antibiotics. If you feel tired that may point to adrenal fatigue (due to your body being overwhelmed by foreign invaders), or a current infection. This isn't black and white, and of course it could be a million other things. But if two weeks of antibiotics didn't do the trick you can do what some people do - and try them again but longer. Don't expect to feel great for a while even if you "cure" yourself - as antibiotics have a way of running us down. If Buhner herbs interest you, I think this is a patient alternative to recovery. Why not try a milder approach. Herbs can be antimicrobial, and as they are made of hundred of compounds compared to single compound abx, they can even work better against antibiotic-resistant bacteria.

Try not to overwhelm yourself, but research and educate yourself, be patient and don't let Lyme define you.

I think it's too soon to call this Chronic Lyme yet, though you're right that it could be headed that way if more beneficial treatment isn't started soon.

We don't ascribe to the "Post Lyme" thing on this forum it has connotations of somatoform disorder and we all know better than to believe our symptoms are all in our head.