YES, link: Kidney Disease and Lyme or Erlichiosis

[Guest guest]

I had three years of mystery kidney problems. 20+ years of bladder since onset

of lyme. Out here where I am they ignored 7 specialists all agreeing I have

lyme, pos test, ring rash, whole nine yards after tick bite. They wanted to

choose Lupus or MS for me, I said later.

The bladder stuff started about 2 years post tick, and went on for 20 years till

it got way worse all at once from a kidney infection. As a teen, I had this

bladder problem start, and was told all kinds of crud like childbirth (not for

another 5 years?) could be doing it, etc. Running faucets would make me run,

putting a toe in the tub, etc...cold weather....blah blah. One guy out here in

my kidney help search, tried to give me that old lady drug for continence, I

skipped it. I dont believe in those kinds of remedies.

First, with the 3 year lately kidney problem, they saw an infection.

Undertreated. Came right back, treated again, with 5 days of cipro, no good.

Then, the test showed MULTIPLE infection, so they treated it as 'tainted sample'

- where it really was probably a FEW bacteria not just the one now. I think

thats wrong; if they saw the lyme, erlichia, and X bladder infection, of course

theyd be multiple in the result, right?

So doc said, cant be same infection, must be nothing. ???

Had all kinds of tests, the cystoscopy, etc, nothing wrong. Kidney specialist,

etc.

I had to figure this out myself.

I was unable to make it to the bathroom many times - its as if something was

irritating me. I found out by switching to bottled water, that its the chlorine

in the city water I became allergic to. Probably from lyme, because my doctors

never heard of such a thing. Maybe lyme induces hyperreactivity to city

chlorinated water. Anyone???? Please try nixing your city water and tell me what

happens for you.

My little boy, born to a lyme positive mommy, also had the exact same things

going on this year, when I figured it out. His also got better when we switched

water. So its gotta be right. He's 5 and was wetting the bed all of a sudden,

all the time, wetting undies, etc. When he never had that problem before.

i had noticed a very odd sensitivity to chlorine for a few years now- if I put

it in the washer, and got a whiff, I couldnt get that awful smell out of my

mouth and nose for hours. Same if I accidentally touched the wash water. Much

different than I remember growin up, never had that reaction. When I turned on

the tap, it smelled awful to me from 3 feet away, worse than a pool - yet the

water company tested and said it was ok within limits...however: they DONT

account for any chlorine compounds that arent " free " - meaning, they only

measure the chlorine that HASNT reacted with metal in your pipes, or formed a

compound while killing off bacteria - and in a closed system (piped to you,

whole time piped) this chlorine doesnt just evaporate, its now a compound and

cannot evaporate due to the closed piping system)=---and Im pretty sure that

chlorine compounds are just as irritating as free chlorine. Chlorine is an

irritant besides being toxic.

So for all of you experiencing this weird bladder stuff try bottled water,

preferably boiled before you use it to make juice, tea, etc....just in case,

some bottled waters have high bacteria levels from sitting around-- (and my

kidneys were bad, I had many infections, pain, a scan shows a calcification in

one of my kidney arteries (sclerosis) but they ignored that as a source, no

stones visible etc...) they were swelling during the night and I had horrid back

pain every morning after 'going', and it seemed they were backing up - that my

bladder couldnt hold it lying down, so it would back up and swell my kidneys. I

think thats right, because I could 'feel' that I was done, yet it would still

trickle out like gravity for a good while...so thats my own understanding of

what I was feeling. Since quitting the city water altogether, and buying bottled

water only for drinking/cooking, I can now not worry about that and the kidney

pain went away.

WITHOUT DRUGS! And I had to figure this myself....gosh. I quit seeking the

doctor after 3 years of runaround.

At its worst, COFFEE aggravated the heck out of it - Id only have coffee on the

weekends so it was easy to see the connection - on those next mornings, my back

would HURT again on waking, where all week it had felt relatively better...its

the acid in coffee, so stay away from it if you have the kidney problems.

Sometimes, my back hurt so bad waking, that i needed help to get up, it seemed

everything swelled from it including my lower spine.

My erlichia was borderline and the goofballs here so no reason to treat for it.

Im gonna seek treatment when I move back east (soon). I get those itchy red

spots in the summer heat on my face which is an erlichia symptom, so do my kids.

(seems like a bite, but its not, it goes away in an hour or two with no mark

like a bite would leave).

bailiekatz <bailieboy@...> wrote:

> <<or you can't go at all. In my

> case I can't go and have to self-catheterize. Very awful.>>>>

>

>

> During my battle with lyme disease. I had to be catheterized

twice..........and you are right it is awful.....so it must be very

difficult to do to yourself.

> I also had about 10 bladder/kidney infections a year.....finally I

saw a Urologist.........and had to have a bladder scraping and my

urethra stretched.....things have been fine ever since.

>

> Connieknwnj

>

Connie! Thank you for your note. I keep mixing you up with Connie

Michigan. Yes I have to self-catheterize about six times a day and I

am going to the bathroom almost 16 times a day at three times the

normal amount. It is terrible. I really feel awful for anyone who

has neurogenic bladder. But, my urologist thinks that now I have

kidney disease or some type of kidney tumor or something aggravating

the situation. I have had so much lyme treatment, the idea of more

antibiotics does not thrill me. I really try to avoid them now and

stick to a more natural routine and I take very few medicines.

I may go to a new alternative doctor that really helped someone in my

city. This young girl was in a wheelchair. His approach makes a lot

of sense and I have an opportunity to see him and so maybe I will.

My biggest worry is blaming everything on lyme and I just think

you/me whomever has to be careful not to do that.

I can't believe you had your urethra stretched? Not to get into

detail but is that done under anesthesia? Is that the procedure where

they stretch out your bladder with fluid? They do it for a disease

called Interstitial Cystitis which a friend of mine with lyme also

has.

Very scary stuff!

THANK YOU.