i've posted here a bunch but haven't really introduced myself yet.

i'm not sure yet if i have lyme disease; i just ordered the igenex kit and am trying to figure out a way to get to a lyme literate dr.

my symptoms, for the most part, started in june or july. i began having symptoms of a UTI, without obvious infection.

specifically, i had really bizarre polyuria (esp. following meals - i would need to pee 3-5 times in a row, and each time i would somehow produce a ridiculously large amount of very dilute urine. of course checked for diabetes - neg.) and some urethral pain. i was then diagnosed with interstitial cystitis (without testing) and sent on my way. i worked with an herbalist who specializes in IC, went on a very strict diet and took chinese herbs for 5 months; and while it seemed to help my bladder, the rest of my body crashed. so now i'm off that diet and trying to eat more 'normally'.

oh, i also forgot to mention that a very sensitive test called a broth culture was done on my urine, and this particular lab picked up staph bacteria. so, maybe an imbedded, difficult to detect infection?

then, one day i happened upon lymenet. i freaked out. to be honest, i have a history of health anxiety/hypochondria, and i started obsessing over this, sure that LD is what i have. well, for awhile i didn't really have any symptoms save the bladder stuff and occasional IBS, but then i developed a really painful sore throat which lasted for four weeks (at this point my body was run down, severely) and kept moving from one side of my throat to the other.

that finally went away, but then i developed headaches (temples, forehead, cheekbones, even teeth) that wax and wane but rarely go away entirely, and occasional numbness and tingling in my hands/fingers.

i also have severe anxiety and depression, but i don't know which came first - if this is all caused by a fear of LD or what.

anyway, i moved home to stay with my family because i was doing so horribly. but the thing is, my mother absolutely REFUSES to discuss lyme disease with me. she is SURE i don't have it, as are various other doctors (and of course that supports her claim). she thinks my problems are purely mental, and as i do have a history of depression and anxiety (but NEVER this bad), as well as health anxiety, etc, i don't know what to believe. maybe my mind really is causing all my symptoms? the mind is a powerful thing.

anyway, i want to explore lyme disease, because at this point i'm absolutely desperate, but my mother screams at me, refuses to listen, is totally unsupportive of the idea and insists if she were to listen she would just be 'feeding my hypochondria'. i'm scared and on the verge of suicide, honestly, and i don't know what to do. although i'm 24, i'm so messed up right now that i can't do this alone, i need the support of my family.

sorry this is so long.

any ideas, anyone?

Your story sounds very familiar. I am sorry your having such a hard time with your family. I am sure alot of other people on here have similar stories.

Most people who have LD often appear to be hypochondriacs(pre diagnoses)

Do you remember having a tick attachment? How do you think you contracted it? Have you ever been on abx and gotten a bad reaction from them?

The best thing you can do is to see a LLMD. If your unable to, maybe you can get your own dr. to have a western blot done by Igenex.

anyway, i had indoor/outdoor cats who had a lot of fleas (this was in portland, OR), so i could've gotten it that way. who knows.

i'm just so terrified.

and i will be getting igenex tests done.

also, has anyone else ever experienced my bizarre bladder symptoms (which seem even inconsistent with IC)?

you're already looking out for your well being by being studious and looking for answers, that is not a sign of hypocondria but a sign of intelligence.

a lyme disease diagnosis is, unfortunately, usually a diagnosis of differentation. everything else needs to be ruled out first.

have your dr run tests for autoimmune diseases, specifically tests for ANA and RF.

also have a CD3 circulating immune complex test run. if this is high and the autoimmune disease tests are negative then you have a persistant infection.

these are easy tests to run.

sorry about the family problems. you have to be resolute. they are backing the dr's so far. when a dr says you have unequivocal lyme (if indeed you do), they will back that too.

as of now they are deciding with the professionals, but have these professionals run ANY tests for lyme? do they have any experience with lyme disease?

you wouldn't go to a heart doctor for a lung problem would you?

you'll get through this, it's a new year with the best of bright possibilities of ahead.

be patient.... and pound the pavement.

now... a resistant staph infection is not something to be willy nilly about. it be your underlying problem, not lyme.

you can culture bacteria to see what resistance the staph has and use the according antibiotics.

if you have IBS or IC this needs to be substantiated, testing must be done to conclude this.

the dr that gave you that diagnosis without proper testing or clinical expertise in that area is guilty of medical negligence, plain and simple.

check the following for more about UTI and infection :
http://www.labtestsonline.org/understanding/conditions/uti-2.html

The other thing is --- you should get tested for co-infections, most dr.'s won't bother to test for them if your lyme test is neg.

I hope you get some answers
Lisi

Your story sounds simliar to me too. I hope things improve with your family.

You said,
"i also have severe anxiety and depression, but i don't know which came first - if this is all caused by a fear of LD or what."

I have had severe anxiety, the best treatment so far for the anxiety has been treatment for a co-infection called Babesia.

Good luck and God Bless,
Beverly

Your post caught my eye when you mentioned UTI's and IC--I, too have this--I was just pulled off my antibiotics for a while to see if my body will fight on its own after 8 months--7 days off antibiotics and i got a UTI immedicately and my sinuses are a mess again,

My advice to you is to find a LLD that can test you properly and see if lyme is a contender.

I carried over 12 diagnosis's around for 15 years--most of which was caused by the lyme and i have some permanent damage-ie arthritis (osteo) that is pretty bad for my age.

Hang in there and come here for your support-I do--my husband is not good at this at all--he is mad because my disease has sent us to the poor house and I can not work again yet--been out for 8 months after only being back for 6 months after taking a year off for knee surgery-----------it has been a long hard journey for me--I was told I had fibromyalgia, cfs, osteo arthritis, ddd, djd, IC ibs, tmj, depression, anxiety, i was developing cateracts on my eyes at age 42, pelvic floor dysfunction and the list goes on--also been refered to the shrink a bunch in the last 15 years.

You are young-I wasn't much older than you when my problems began--I have been through over 40 specialist all over the country--if you have a lyme literate doctor in your area--go now and get tested--you will know if you have it or not. That way if you do you can get treated and if you don't you can move on.