Hi everyone, So it's been months since I've been on here - not that I've gotten any better; on the contrary, I'm just frustrated with not improving anymore.
I did 1year and 1/2 abx and improved in some ways, yet in others I either got worse or stayed the same.
My vision has deteriorated since I got lyme 2 years ago - I always have sore/stinging eyes, and my vision has gotten so blurry now I worry I'm going to be blind in a few years (I'm 21). I even got glasses, but they just hurt my head and make me tired. And it's not the Rx, because I had it double-checked with two docs and it's the third Rx I've gotten in the last two months. I know it's lyme that's causing these problems with the glasses not working too - it always causes problems for which docs seem to have no answer.
My neurological symptoms never improved, even with all the varied abx I tried. My higher brain is disconnected, I can't feel emotions anymore(I don't know how else to explain that and it may sound drastic but that's how it is). I have horrible word-finding trouble, reversal of words when reading and writing - it's dyslexia-like - and I should note - I never had any health problem pre-lyme. I haven't seen my llmd in 5 months and have been off of abx for 3 months. I didn't think either one was doing me any good anymore. I just wasn't improving, and I hate what abx do to my body.
I've been considering doing a samento, burbur, cumanda, quinine protocol a lyme recoverer recommended me, but it's very expensive and I can barely afford school right now.
My worst symptom is without a doubt my horrible fatigue. It never leaves, never improves, never gives me a break. I have maybe 4 hours a day at best where I can handle being awake before desperately needing a nap. I wonder now if I should see a neurologist and see if I have some sort of chemical imbalance in the brain that causes this debilitating fatigue. I'm sure the lyme caused it, but I need to find a way to undo it and I don't think abx help me at all - they haven't.
I take lots of vitamins and drink tea and try to eat healthy (and sleep loads).
I'm desperate for help with these higher brain issues and this fatigue - any advice whatsoever would be greatly appreciated. I use to research lyme a lot, buy a lot of lyme-specific herbs (stephania, schisandra), but they truly didn't help much.
I can say that my eyes are no longer crusted over with the pink-eye like film that used to greet me every morning.
I have also had some urinary and prostate troubles along the way..any advice on that too.
thanks
bernie
Posted by polar blast (Member # 9142) on :
get an llmd doctor that you trust...dont give up as there are other antibiotics you can try... 1.5 years is not a long time, others got better by the third or fifth year..i was once like you..
Posted by bettyg (Member # 6147) on :
have you had a thyroid test done ? eyes could be GRAVE'S DISEASE, betty davis eyes ... hubby has that.
Posted by Wimenin (Member # 15294) on :
bernieb4...I see you're from the Madison area. Im from the same area and have been seeing a wonderful LLMD in Wisc. If you want his name, pm me and Ill send it to you. No offense to the neuros or pcp, but odds are they arent going to help you long term like a good llmd will when it comes to lyme.
Posted by bernieb4 (Member # 14654) on :
bettyg, i have had three thyroid tests done over the last year and a half, and they have all come back 'normal'. i also had a lyme test done this past january, which came back negative with only band 41 positive. i don't trust any of those blood tests to be honest. i have a low body-temp. all day long 96.8 and the worst fatigue imaginable, that doesn't respond to sleep, regardless of how many hours i sleep.
wimenin, what do you mean by "neuros or pcp"? i will pm you about llmd.
Posted by bettyg (Member # 6147) on :
bernie, we all have LOW temps; no 98.6 for us; that means FEVER for us folks.
which lab performed your lyme test? big difference... ****************************************
was it igenex, mdl, fry labs, clongegan/sp, stonybrook, or florida lab?
which specific test? western blot igm & igg ******************************************************
pcp is primary care physician
she may be meaning your neurological symptoms; she'll have to explain that to you, i did know the pcp abbreviation.
Posted by bernieb4 (Member # 14654) on :
the lyme test was IgG, but it was performed at some common lab in iowa-not a specialty lab. that was just a doc at school i asked to test me for it about two months ago, because i knew it would be covered under my tuition costs. i don't think he believes lyme disease is anything more than a bulls-eye and a 4 week treatment w/ 200mg doxy a day..just the robot type.
i don't want to pay for an expensive lab at the specialty labs. i know i still have lyme and it wouldn't be worth it. though i guess i don't know if i have bartonella or babesia, but i've heard none of those are too accurate anyways.