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permanent damage from lyme

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Posted 10/20/2014 2:21 PM (GMT -5)
What kind of stuff won't get better? I have anisocoria and my doctor said it might not get better because it's like I have brain damage? I asked on another thread but what the hell- what about memory? And skin? Should I expect to always have interstitial cystitis and thyroid problems? Your experiences??
Posted 10/20/2014 2:23 PM (GMT -5)
i dont know, drs,are just practicing, after all, hang on to hope and that the possibility of miracles, exists.
Posted 10/20/2014 2:29 PM (GMT -5)
Well, it could depend on the cause - I think anisocoria can be caused by nerve irritation...and nerves can heal once treated...so I wouldn't lose hope...
Remember: Doctors don't know everything! I have several stories of Doctors' being incorrect on so many issues just with my own family...so have a positive attitude, and believe that it will get better.

There are lots of people who have healed completely...but it takes time, especially if you've had symptoms for many years.

Have you had your eyes checked out by an optometrist/opthamologist to rule everything out - such as glaucoma?
Posted 10/20/2014 2:53 PM (GMT -5)
When I went to the eye doctor he was so busy he only saw me for about 2 minutes and gave me glasses. He said not to worry about it. I got a bad headache and then my pupils changed. I want to know so bad what is up with these headaches... driving me crazy.. I want to be able to see again so I can drive.
Posted 10/20/2014 4:12 PM (GMT -5)
Your pupils changed and you got headaches AFTER the eye appointment and the glasses???

I would go to another eye doctor. a.s.a.p.
Posted 10/20/2014 4:43 PM (GMT -5)
No. I got headaches and my pupils changed and I went to the eye doctor maybe...5 months after it started. He didn't even look at my eyes after he dilated them, he gave me glasses and sent me on my way.

I just think that maybe the headaches and the anisocoria are related somehow. Maybe from Bartonella? Maybe lyme? Do I have meningitis or is my brain somehow swollen? Are the bugs eating the nerves for my eyes? I feel like I'm going blind! My instincts are telling me that something is very wrong, my body is screaming at me lately! But, maybe that's just the anxiety?

All I know is I'm miserable with face and head pain. I can touch my chin to my chest, so it's probably not meningitis. I want to be on a morphine drip hahaha. I want to try and figure out if I'm going to get my vision back!
Posted 10/20/2014 5:17 PM (GMT -5)
Hi IHL. As far as anything permanent from what I have read and what my dr has said lyme causes temporary issues. Back in januaryI could not use my rt arm bc the nerve in my shoulder was severely affected. Unless a nerve has been damaged over yrs and yrs it can repair but it just takes a long time. So have hope that everything will indeed go back to normal once you have treated for a proper length of time. I have twitches still and from I understand those could take a year or more to subside. As far as the interstitial cystitis - hold on there!! R u sure u have it or were u misdiagnosed? Bci had similar symptoms to it but only had cysitis which was due to the lyme. I had cystitis issues for five weeks. I can tell you what I did to help it just fill me in on what's going on!!
Posted 10/20/2014 5:22 PM (GMT -5)
im sure the cystitis is from lyme. i think its all from lyme! ive had it for 5 years misdiagnosed hahaha horrible stuff
Posted 10/20/2014 5:31 PM (GMT -5)
Five yrs?? Ugh. What r utr symptoms though? And what antibiotics r u on again?
Posted 10/20/2014 6:57 PM (GMT -5)
For interstitial cystitis I pee maybe 60 times a day at the worst and usually 4 times per night. I have terrible pain. Discharge. I have urgency like crazy. Sometimes I go and it's only like 2 drops and I just constantly feel like I'm going to pee. I have peed my pants a few times... incredibly humiliating. I'm 25 years old I shouldn't have that problem haha.

Right now I'm on zithromax.
Posted 10/20/2014 7:09 PM (GMT -5)
oh, gosh. I went to the bathroom 20 times a day, and maybe once at night, but then again I only had it for 5 weeks. sounds like you have been dealing with this longer. It is a rule of thumb pretty much that when you have interstitial cystitis it is painful when you have intercourse - that was not the case for me. that was actually one of the reasons I knew I didn't have it. I had severe pain, but yet none when behind bedroom doors! do you have a regular dr or LLMD? Bc before I even saw my LLMD, I went on a sugarless diet and started taking D-Mannose tablets. That helped a ton. You can also take femdophyllus (a priobiotic for the UT). I would bet if you did these things it would ease your issue up a ton. Also, I was diagnosed with Bart later on. I read that Bartonella can cause cystitis. So if you treat with the correct antibiotics, that should help resolve the issue. You are only on Zithromax? I was on Zithromax and doxycycline (but not right away). I posted on your question about how I got lyme - I am sure you will find it interesting. Are you on the anti-lyme diet??
Posted 10/20/2014 8:12 PM (GMT -5)
I'm not on any special diet. I lost 13 pounds since July now I'm only 92 pounds. I stay away from dairy gluten and sugar, my son is allergic and sugar is bad anyway. I just eat healthy and as much as i can.

I'm pretty used of the bladder stuff it doesn't really bother me as much as the face and head pain lately. Having sex is miserable. I tough it out to make my fiance happy. I can't tell you how many times we've had to stop because I started crying.. really embarrassing. And frustrating. He somehow stays with me through it all. Even though he cheated on me last january.. I feel like I'm failing that guy every time I turn around.. I also have pelvic adhesions and had to have corrective surgery. It feels like it's bad again. My uterus and bladder are connected with scar tissue so I'm sure that plays into it all. I bleed off and on all the time. Sometimes for months at a time. Sometimes just after sex or a hard workout (those never happen anymore) or a long walk or bike ride. Sometimes just cleaning my house will make me have cramps and bleed. Or if I lift my arms up above my head it hurts. I just hurt everywhere haha

II am seeing and llnd. I go into tomorrow to get my blood drawn for igenex testing. I am only taking abx as a "challenge" or whatever. He said he thinks I have bartonella babesia and lyme. That probiotic you mentioned sounds interesting I will have to look into that.

I'll go read your story right now. I've read them all but I can't remember anything... ever... ugh.
Posted 10/20/2014 8:21 PM (GMT -5)
oh IHL I am so sorry you are struggling so much!!! =( I will say a prayer for you tonight - I do hope you find the right medicine combo!!
Posted 10/20/2014 8:38 PM (GMT -5)
Thank you! I'll pray for you too. It's funny how when I write it down like that I can see how bad it is. I should give myself more credit for making it through every day !

I honestly don't remember what it feels like to be healthy. To not have at least a few symptoms. I've found a way to live like this. I've rearranged my life so to speak. I hope that changes soon.
Posted 10/20/2014 8:44 PM (GMT -5)
It will, in time!! I know how hard it is to take care of kids when you are sick - I do hope you have some help!!
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