WEll, My symptoms are increasing every week now for the past month. I started mino, 50 mg every other day, 2 weeks ago.
2 days ago, my ears started bothering me. I have pain in my ears. Last week, my joints started cracking, my neck grinds too, before that, floaters. What next, brain fog, flashing lights, speech loss....It is too fast. And when all my symptoms began after my surgery 5 months ago, it was all in my legs. My lyme was dormant for 7 years. After surgery - boom - all came out.
I am going downhill fast. the abx is stirring up something, because my older symtpoms are coming back. But wouldn't I need stronger abx since my symptoms are getting worse every week? I don't know what to do. I see my doc in 9 days. I am afraid if I wait that long, I will lose my hearing, and become blind, etc.... Jenin
[ 19. August 2007, 07:16 AM: Message edited by: jenin98 ]
Posted by buckfever (Member # 9876) on :
Hi Jennin , I know that is scary to have your symptoms get worse and to get more of them , when you are being treated ! It has been happening to me as well.
sounds like you have had a good seven years and I can't blame you for being worried with the return of symptoms.
I have a hard time telling the difference between herx's and the dissease , sometimes I think there is no difference at all, epecially when the symptoms don't let up as they seem to for many when they herx.
There are days when I think why even bother with the damn treatment when it makes me feel worse !I'm paying for my own misery ! All I can hope for is that someday I too will turn the corner , like so many peole here have done .
When I feel at my wits end , something tells me to keep on keeping on, I hpoe for you the same something to give you the strenght to see the light at the end of the tunnel, after all you made it there once before !
Hoping you have better days with improvement in your symptoms ASAP !!!
Bruce Posted by jenin98 (Member # 12617) on :
what about an ent? I think I will make an appointment. Jenin
Posted by CaliforniaLyme (Member # 7136) on :
Sometimes when you are Herxing new symptoms will appear- and sometimes it is just getting worse- most of the time it is Herxing-
Posted by jenin98 (Member # 12617) on :
If getting worse, then abx should be increased right? Jenin
Posted by buckfever (Member # 9876) on :
Hi Jennin, what you are asking is really what you should be asking your llmd. I wouldn't wait to ask at appointment , I'd call asap if you're getting worse this quickly !
Believe me , I do know what you are going through as I will be calling my llmd tomorrow am also!
Hope you get the answers you need soon !!
Buckfever Posted by TerryK (Member # 8552) on :
quote: I started mino, 50 mg every other day, 2 weeks ago.
I'm not a doctor but this doesn't seem like enough abx. I agree with buckfever, call your LLMD.
Have you been tested and/or treated for co-infections?
Terry
Posted by jenin98 (Member # 12617) on :
yep. My first appt with the llmd was 2 weeks ago. On my first visit, he gave me the mino, 50 mg every other day. We sent out for much blood work, 11 tubes of blood, urine, salavia,..... coinfections.... I see him next week, and he will increase the mino, double it, and add in another abx (I think zithromax). He will start IV on me too, not sure when, I have a whole list of questions for him. So, what do you think? I think I need to start IV now though. Jenin
Posted by lymednva (Member # 9098) on :
While it is scary to be going through this right now it sounds like your LLMD has a plan and put you on a low dose of abx just until he had a better picture of your overall heath.
As hard as it seems to do, I suggest that you just hang in there and wait it out. I know from experience that when you are feeling lousy nine days can seem like nine weeks.
However, it will be here soon and your LLMD is probably busy and may not have had a chance to get all the results of your tests and put together the pieces of the puzzle yet.
It sounds like the ketes are just getting stirred up a lot and the mino is probably causing you to herx, too.
Meanwhile keep posting here for support. You'll make it and I highly doubt you will lose your hearing or sight, especially in such a short time.
Posted by jenin98 (Member # 12617) on :
You guys are wonderful. You just keep me going. I am not patient at all. I am just baffled, I had NO symptoms for 7 years, except an incident 2 years ago with my neck pain and headache, which went away with a little prednosone.
then, after my surgery, boom bam. I have almost every symptom, and this all happened in 5 motnhs. that is why I am freaking out, I had NO, NO symptoms for 7 years, no gradual symtpoms, no fatigue...just that neck thing.
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