posted
Hi all, I would appreciate any input about anything that seems relevant to my situation. I am scared, confuse and am just trying to keep it together while feeling that a major window of opportunity to treat is quickly escaping my grasp! Here is my story so far.
I, with my fingers, removed a (not yet engorged) tick the morning of Sept 9th. I live in an endemic area.
I went that day to my PCP. Ordered tests and tick identification. I asked about Lyme... he gave me a script for 10 days Doxy (2xs a day 100mg) and told me to take it if I wanted to but that Lyme was rare. I did some research later that night.
The limited first research I did focused mainly on whether I should still be nursing my son. My verdict...no. That night's bedtime nursing session was our last
I didn't start the Doxy. I at that point hadn't researched nearly as much as I have by now and didn't realize the importance of treating ASAP if in an ndemic area after improper removal.
Within 48 hours the bite turned from a very small pink dot to a slightly swollen red lump. The next couple of days the bite became itchy and had a fluid blister at the center (like ant bites get). I chalked it up to allergic reaction.
The next few days it became red and slightly swollen around it on the left side of the bite. The redness was less than 3/4 of an inch across.
I also noticed a couple episodes of being chilled...not so much having the chills as I read about wit Lyme (assuming they are meant to be flu like whole body chills)...mine were slight and only some goosebumps. Also, soon noticed fingers on my left had seemed "slow". I got a little worried and I started the Doxy. This was on day 8 after bite. The redness around the bite had not gotten bigger, but was not getting better either.
Saw my PCP again the next day. Test results negative (I knew testing the day of bite was useless). Tick was identified as a Lone Star Tick and Doc said couldn't have given me Lyme (I also knew this is speculated to be incorrect). Doc said come back if I had joint pain and we could test again in 6 months...pshhh. Interestingly, when my temp was taken...it was 99 degrees when I normally run a little cold...so I had a mild fever.
Day 11 post bite (day 2 on Doxy) I start feeling very ill. Trouble sleeping, pressure in my head, super tired, blurry vision, multiple pre-syncope episodes, became depressed (having weird thoughts about if I loved my son as much as I used to!), and absolutely NO appetite (lost 5 lbs in the ensuing week). Appetite hadn't been good up 'til that point with the stress of worrying about possible Lyme...but after the Doxy it completely disappeared.
Soon found references to Herxing and Intercranial pressure (Doxy side effect). Having absolutely no idea if it was all caused by low blood sugar, side effects, Herxing, or what...I made an appointment with an LLMD and called my PCP for immediate advice. I stopped the Doxy as sugested by my PCP on day 8 for fear it was side effects and so I could hopefully eat and stop practically passing out all day.
The LLMD I scheduled with was a collegue in a group of a Dr. who was recommended through the lyme association's referral process. I took her appt cause it was sooner than the referred doc and I assumed being in the same practice it was fine. Looked the Dr. up and found out she was VERY new to the practice, a rheumi, and had zero references or reviews on sites like VItals.com referencing Lyme. This caused me to be suspicious.
I called back and asked about her credentials...was assured that although new to their group, she has been treating Lyme in the past and that she was ILADS. At this point I knew I still needed help determining if I needed meds and if I did need them...I needed them FAST so I kept the appt instead of starting my search over and adding more time. The group she belongs to is Dr. S's in North VA. (anyone go there or have advice about them?)
At the appt at times she seemed to know her stuff. At times it kind of seemed like she was trying to scare me. She also parroted stuff from printed out papers and after leaving and coming back into the room kept referencing that "we" were going to recommend this (I believe she was conferring with Dr. S about treatment).
After explaining my concerns with the effects felt after taking Doxy, I was prescribed Minocycline in a graduated dosage schedul(ending with 100mg 2xs a day after 1 week of ramping up). I asked about a cyst buster since my research led me to believe that the dosage of Doxy I was on had probably not killed any Lyme and possibly caused cysts...she said it wasn't necessary until I was chronic :/ (didn't think that sounded right...don't want to get to chronic!). I also asked about Mino being as effective/appropriate as Doxy and was assured it was.
Later research has now informed me that 200mg/day of Mino is basically the same as 200mg/ Doxy and that I am STILL NOT KILLING THEM! And still possibly making the situation worse in regards to cysts.
My appt was Fri, so I had to wait until Mon (this past Mon.) to leave a message about this concern. Still didn't get a call back today so I will have to call back again tomorrow.
Meanwhile, I am fearful of stopping the meds as Monday was exactly 3 weeks post bite and I know that even starting treatment at 4 weeks post infection greatly decreases the odds that it can be eradicated in the early stage. However, I don't want to be making things worse in re to cysts.
I want to ask her to try me back on Doxy so I can get to a high enough dose to actually kill them (you can't go higher than what I'm getting to on MIno)...and just hoping that the effects I had were just Herxing.
Am I wrong about the Mino? I currently am at 100mg/day in the ramp up dosage schedule. I also feel like I should have just started out at 200mg/day and that this ramping up stuff is only wasting the last good week I have left at fighting this stuff early.
Help. Please. Feeling desperate here.
Sorry for being so long. I'm sure you guys can relate to the stress and anxiety and just wanting to know what to do.
Posts: 34 | From VA | Registered: Oct 2013
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posted
Oh and I've had more symptoms in the last few days. Twitching fingers, weird tingling in my scalp, and knee felt achy yesterday and day before.
Posts: 34 | From VA | Registered: Oct 2013
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