posted
Thank you so much for replying -- I've never participated in a discussion group before. YIKES.
This is my story -- I have neurolyme pretty bad (thinking problems, numb back, itching, burning on back, arms, legs, anxiety, blah blah blah). I've had pretty bad symptoms for 2 years. I do have a fantastic LLMD. After more than one year on other antibiotic regimens, I took a month of fluconazole last month and the neuro symptoms were huge (huge herx). My LLMD was very pleased.
I requested he give me as much junk as possible in addition to more fluconazole, to really give those germs a kick (I always ask for the most he'll give -- he's conservative but good). Hence the mino. Due to side effects, he told me to stop the mino after 10 days if I didn't see signs of a herx. Unfortunately the side-effects of mino are similar to my lyme symptoms...
I'm taking 100 mg 2x per day. I will start fluconazole on Sat. My skin is starting to get really prickly (week into mino), so I think I'm migrating from side-effects to a herx. Therefore, I will stay on the mino and attempt the combo with fluconazole.
I think I might really like being part of a discussion group. I was really dismayed/relieved/comforted that you actually wrote back.
BTW -- I do keep a log. Every day I write a line or two about symptoms/severity.
thanks so much! Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
Gee Allie, I too am a newbie and the whole discussion thing is new for me too! It was the topic of this post that I seem to continue to read and post--yikes!
I only started treatment mid October...went from 200mgs/Doxy per day to 300mgs/Doxy per day. Then started on 200mgs of Mino and 200mgs Difulcan / fluconazole. My doc states great cell penetration. Yeah, I have to think he's right!
Beachcomber, good to hear you're hanging in there too. I can relate to the extreme fatigue, still a bit of dizziness and head pressure or is it fog? This is not a joyride!
I have been so thankful to have all who post here share their experiences...I speak of Sammi in particular because she/he is up to 400mgs of Mino a day! WOW !
I can only hope to get there...
Allie, when you say ``side-effects of mino are similar to my lyme symptoms...'' what do you mean? Isn't that a herx? I'm asking because I think I would be able to describe the same. I was/am a MS patient and my exacerbations from the past have reared their ugly head - so to speak- I guess now the term is herx.?
I do have a question that I think I can answer, yet hope someone else does. Obviously, Minocycline causes dizziness...that seems universal here. My particular question is: Is it (the dizziness) a drug reaction? Or is it a lyme related lesion or scar or whatever..... I continue to ask myself the same question-do people who do not have Lyme experience the same dizziness?
And I wonder how Trueblue is doing?
Best to all, tori
Posts: 158 | From PA | Registered: Oct 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by tory2457: And I wonder how Trueblue is doing?
*looks around* Me?
I'm not on any meds at present and am waiting to get rid of a dodgy gallbladder and then give Biaxin a try.
I'm not sure but it seems to me when I looked up Doxy and Mino, I believe dizziness was listed as a side effect of Mino. Not that that doesn't mean it isn't also a herx thing.
It seems to, mostly neuro, me that many different ABX make me dizzy or give me that (underwater getting hit in the head with a wave) vertigo thing.
I hope you're all holding your own.
As an, not really, aside... I do believe slow and steady wins the race. So if you find you cannot take the same amount of ABX, or anything else, as other people don't sweat it. Every person is different and what works for one doesn't necessarily work for another.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Tori:
The dizziness is a side effect. My assistant does not have Lyme. She took Mino for her skin and said she felt like the earth was moving in waves the whole time.
Yup, it is headache/head pressure. The brain fog is just one of those lovely accessories of LD. I feel like my brain is getting too big for my skull a few hours after taking Minocin. It doesn't last all day like it used to. Sometimes a little bit of coffee helps to lessen the pressure. Of course, the java hurts my gut. No winning (yet).
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