Saw IDS - what a waste

What would I give to know what I know now when I was bit in June 2013!
Like you Dismissed I had a tiny tick on my thigh that I thought was a scab for 2 days and then when I tried to remove it it just tried to crawl away and I killed it. Of course I went straight to the GP who told me to wait for a month, do ELISA and then treat with 2x100 Doxy for 14 days. I had the rash, the tingling and some flue like symptoms but nothing major. 14 days doxy done, some check Elisa tests and I should have been perfectly fine.
Now I am just under treated with Lyme and most likely Co. I can function well for now but my biggest fear is Lyme will progress so I am throwing all Buhner can suggest at it.

And I was on a Paleo like diet for 3 years at least previous to the tick bite, generally healthy and active - hence the bike riding in the city park bushes. I can't get 100 m near a bush now.

So 2x200/day of doxy until symptoms are gone for 2 month at least should be the first, possibly not the only, measure after consulting a doctor of course. I would have done at least that if I could go back 3 years (or never get in the woods for that matter).

This forum is a life saver for many so that is one thing you did good coming here.

Post Edited (Stanislav) : 12/7/2016 1:48:15 AM (GMT-7)

Hi Everyone! Thanks for all the info and responses. I hope people are feeling better today - at least in some spots and from some symptoms. I will continue where I left off, with what has been going on since removing the tick and heading to the ER later that day. As I said, the PA at the hosp. ER - put me on 100mg Doxy twice a day for 21 days and I am on my 15th day. He took the titer and told me it would be negative because it was taken too soon after tick removal and that "they" recommend testing 3 to 6 weeks after tick removal. He ignored the flat, grayish, liquid filled, blister-like covering that lay above where I had pulled out the tick and said:"It is already healing nicely". I told him that it was not a scab and therefore was "not healing" as there was nothing to heal - and that I was concerned about this unbroken pocket of gray liquid. He ignored me and did absolutely no cleaning or sterilizing of the area. I left the ER and when I got home, broke the pouch of liquid and sterilized the area MYSELF with hydrogen peroxide! The area where it had been was BRIGHT red at that time and the size of a pumpkin seed. The swollen, pink, hot, hard, area around it was a little bigger than a standard coffee mug in diameter - and changed the profile of my shin ( right under my left kneecap ). The tick, at the time of removal - had been the size of a sesame seed, definitely no bigger than ➝ 0 ... with 8 very short legs and it crawled on my hand. Don't want to write paragraphs that are too long to read at once - would rather break them up.

I started the Doxy that night and didn't realize how much water I was supposed to drink with it. For the entire evening it felt like there was something stuck in my chest and I couldn't sleep and thought I was having a GI allergy to the Doxy. The next day ( day before Thanksgiving ), I took it anyway and drank more water with it but the headache I had, got a lot worse and I felt feverish in all kinds of places and an overstuffed feeling in the GI and a rapid reflux/repeat situation - even though I wasn't really eating. My brain felt like it (itself) was vibrating and going to burst into tears. By end of day I noticed the bottle said: "Drink with plenty of water" - so I took my next dose with even more water. I am allergic to so many antibiotics and also got C-Diff last April (from too many antibiotics in too short a time) and always have to worry about activating that C-Diff again if I run into ABX occasions. Thursday was Thanksgiving and I felt awful at wakeup time. My headache was getting even worse, my upper GI was acidy, my neck was starting to hurt as well as all the glands and nodes, and I felt like I had little fevers throughout my body. I was also getting chills - where I could not get warm, and my husband knows that I AM NEVER COLD - always too hot. Also, not a bed person (even with all the pain I've had for 30 years - have refused to rest and kept moving against all pain) and HAD TO GO TO BED by 3:00pm. Took evening dose, and really severe night sweats ALL NIGHT - even in inner corners of my eyes. OH - yeah, I just remembered - before I even knew I had that tick, that Sunday - my friends who I was giving haircuts to , were asking me if I was OK because my face was pink and my eyes were red and glossy. My face and eyes are STILL the same as they were that day and it's 2 1/2 weeks later. The Friday after Thanksgiving, I called the Managing Physician of the ER where I was seen. I told him that I was having all these problems and "did it mean I was allergic to the Doxy? Should I stop taking it?"

He told me that I should stay on it as long as I could tolerate it and that it MAY be an allergy, but that there is also "this thing that is a reaction if you have Lyme Disease - called a Herxheimer where the antibiotic actually kicks up the Lyme Disease and you will get sicker before you get better." I asked him if my test was back and what kind it was. He checked and told me it was negative. Then rechecked and said: "OH - wait a minute. It was the ELISA test and it WOULD be negative except that there is what we call an equivacable (sp?) number on your test which means it's questionable in comparison to past Lyme tests where your number was 3.4 and this one is 9.7 so it automatically was sent for a Western Blot test. That should be back in a couple of days." Had no idea what he was talking about and stayed on meds. Friday night headache was nonstop, neck was like meningitis, pains of all kinds in all places just increased, pins and needles, shaking brain, spinning, freezing, sweating, blurry vision, (too many to name) and NEXT DAY?...Well defined red outline, clear patch of skin inside that outline, with bright red, pumpkin seed in the center! Still having all the tortures and will continue story in a few minutes.

julymorning - but what does all that mean about the numbers he named and equivacables, he was talking about? I talked to him 2 days later and he told me the Western Blot was negative and I told him about the Bull's Eye - and he told me to stay on the meds and to follow through with my PCP and an IDS.

dismissed said...
julymorning - but what does all that mean about the numbers he named and equivacables, he was talking about? I talked to him 2 days later and he told me the Western Blot was negative and I told him about the Bull's Eye - and he told me to stay on the meds and to follow through with my PCP and an IDS.

No matter what the testing shows is irrelevant - you had a tick bite with a bulls eye rash...that MEANS lyme disease.

The equivocal test means it didn't fall under negative...or positive...in between.

Ask for your Western Blot test results...because there could be significant bands showing positive.

BUT - you don't need a test to prove you have lyme...you have proof with the bulls eye rash.
Take a picture of it....now. (do you still have the rash?)

I would ask for the test results...you do have that right.


My regular Dr. gives me all test results....as soon as I walk in the door...she prints them off.

I also requested all my specialist reports....called my GP's receptionist...and asked her for copies of them...I think I paid $2.00 to cover the printing.

Quest is not a good testing facility for Lyme...

You can post pictures - but you need to do it through a third party: Tinypic, or Photobucket are two you can use.