Wednesday, December 7, 2011

A Short Break




Hi All,

Taking a quick break so that I can recover, or at least figure out what's going on with my head and ears right now. I've been doing twice daily treatments of Vancomycin, and now I'm experiencing some vision and hearing problems. Whether it's due to ototoxicity or if I'm just having another neuro flare (this time in the head) is a mystery to me and a couple of other doctors.

All I know is that this isn't a mild case of ringing in the ears that can be described as a pesky case of tinnitus. I've had that before in the past, and you just learn to adapt and ignore it. There is a full on whomping helicopter in both of my ears, and even whispers sound like someone is screaming right into my ear canal. There must be an inflamed nerve in there or something--I never knew sound could be so painful. Balance is also way off--if I turn my head too fast, I fall right over. Thank God for Zofran, because, without it, I'd probably be hurling from the spinning sensation.

I know none of this is pregnancy related, but anyone have any experience with symptoms going haywire after starting IV treatment? I'm hesitant to blame everything on a herx, as that's very general and I'm not sure it would have come on this late or lasted this long, however it would be reassuring, as 'herx" sounds better than "damage" any day.

Drinking lots of fluids and infusing bags of saline to help clear my system. Hoping to be back on my feet again soon.

Thanks for your patience with the unreturned emails and infrequent posting. Will be back asap.

Sara

10 comments:

  1. The noise in your head sounds horrible! Please take ototoxicity very seriously. Permanent vestibular issues are no fun! Take good care.

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  2. I've had these symptoms + visual floaters and loss of color vision from bartonella. They are terrible! I hope you get relief soon. For me it didn't come until I started to get my overall symptom picture under control.

    On a different note, my little one was born Dec 2nd. He appears to be very healty!

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  3. Hi Sara!
    I am a fellow lymie. I will share my story soon, just no energy right now. My first child was born july 2008. I was totally unaware i had lme. The pregnancy woke it up. When i repeatedly went to my gp and obgyn with wierd symptoms they just kept saying " wierd things happen in pregnancy". My lyme woke up during that time and fully exploded to an excruciating and disabling degree 2 summers ago. I am not in remission but am 10 weeks pregnant and would like to help by doing what u did....keeping some kind of journal. I switched my meds frm my usual...iv rocephin 2 grams a day, flagyl, malarone, cymbalta, and many supplements.....to just 500 mg of ceftin twice a day.

    I promise to elaborate greatly on my experiences with lyme epecially because i have been healing. Very very very slowly, but yet truly getting there.

    I needed to write u to let u know my ears have been one of my worst symptoms...along with cardiac and neuro etc. I know exactly what u mean by helicopter and extreme sensitivity....plus disabling vertigo. I used to get temporary relief by using my toddlers ear antibiotics. I dont know if they alone are responsible for my ears on the wy to recovert? Smething is working. His drops are called ofloxacin otic solution. I follow his directions....5 drops each ear for at least 5 minutes. Please note everyone i am not giving medical advise just sharung my experiences, of course consult ur dr first always. I am a hypocrite. Lol. I did not mention this or ask my llmd. But i will brin it up as it is possibly helping. I remember the ent had said how awesome theses drops were for ear infctions because u r pourng antibiotics straigh on the source. Like 100 times more effective for ear issues han oral antibiotics. Needed to share before i try to go back to bed. Hope this rollercoaster goes on the upswing for u.

    Just fyi .... I adore my llmd. I believe in my heart and head that she is the best in the u.s. .. At least.

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  4. Me again,
    I just saw u r in Ct
    I am in nj, my llmd is in northern nj. U r not too far. I dont know if u need or want anoher llmd. There just r no words for her. Our lyme crew is some of the most severe cases....wheelchairs, strokes, just totally disabling symptoms. I have seen her bring many including myself back to at least semi functioning and even full remission. No 2 treatments the same. Very tailored to ur personal symptoms and aggressive if u r up for it. No i dont get paid or perk to toot my horn abput her. How could u not adore someone who is doing verythin they can to save ur life.

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  5. Thank you so much for this blog! My name is Sandi. I am new here and was diagnosed with lyme a year and a half ago. My lyme symptoms started right after my little boy was born (now 4 years old). I so much want to have another child, but feel scared. I worry that my body can't handle it and that I will bring a very sick child to this world. Reading your blog has brought me some comfort.

    Thank you!!!!! Since I don't know how it works here, do you respond to people's messages?

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  6. ChasenLyme, I am curious on who you see. Is it Dr. F.?

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  7. Thank you all very much for the advice and support. Happy to report that things are going very well, and my ear issues are completely resolved. More about that in a new post coming soon. ChasenLyme, I'm curious about your doctor. Would you mind emailing me and letting me know who you see?
    Sandi, thanks for reading! I've been very slow to respond lately, I'm sorry for that, but I do try to respond to emails asap. If you'd like to ask questions or talk pregnancy, you can email me at lymepregnancy@gmail.com

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  8. I would love to hear how you resolved your ear issues when you are up for it!
    All the best!

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  9. Thanks for sharing your story. As a fellow LD patient I am envious that you were able to have a baby. I contracted Lyme when I was 36 and single and at the end of my fertile period. I was too sick to even think of getting pregnant and am now way to old for that to happen. I am curious (and forgive me for asking) but did you get pregnant the old fashioned way? My Lyme doc told me that Lyme is transmitted the same way as HIV and to be careful so I don't infect anyone else. I have led a celibate life since then as I cannot fathom giving this disease to anyone else.

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