I see alot of concerned mothers on lymenet from time to time. I also see mothers that beat themselves up more than from time to time due to fetal transmission of lyme. I see that sometimes, they need a boost.I would never ever leave lymenet, on any occassion, without telling someone, or anyone, that there IS hope, that there is an end to the suffering.
For anyone who cares to read this, it will be long. Just a warning.
After 9 months of tortorous pain carrying my daughter in 1997-1998, the obstetrician finally listened and heard my pain when I walked into the office and just crossing my legs put me in tears. The pain was unbearable and I had had it my entire pregnancy. Rolling over at night in my sleep would wake me up in severe pain.
She decided to do a higher tech ultrasound to see if anything was going on. Nice I though, as I was about to have the child anyways. SHe scheduled me for the test, but I never made it. That night, I started to leak and thought my water had broken. I went to the ER, they hooked me up to fetal non stress tests, and did an ultrasound right there in the room.
The doctor said to me "Wow, your baby girl has a very very large cyst on her ovary, once she is born, we will need to remove that cyst and hopefully, save the ovary". I remember crying my eyes out and thinking that that was the most terrible thing on the face of the planet that could happen to a child.
She told me before I left that I still needed that high tech ultrasound so they could get a closer look at the baby. The next week, I went to have it done. A nurse had to literally push me over and hold me there due to all of the pain.
The look on the technician's face was unbelievable. She set down her equipmetn after scanning me and came back in with a doctor. They both peered at the screen, and starred at me. Then, they surfaced around to my kidney area and found I had massive amounts of water on my L kidney. No wonder I was in pain. The techinician then cleaned up her equipment and said my doctor would contact me immediately. She said she could give me no further information.
The next day, my obstetrician called me and I braced myself for what I thought was a realy bad ovarian cyst. Maybe the baby would lose her ovary, I thought. THe obstetrician then said " Jodie, your baby has a 10 centimeter mass growing inside of her abdomen. We have no idea what this is, as we have never seen it before. I am sending you to West Penn Hospital in Pittsburgh tomorrow am for another ultrasound with neonatoligsts".
I went in shambles. I got down there, and Dr. J scanned my abdomen over and over and said "Well , the fetus does have a mass. We do not know what it is. We will induce labor in one week. You can go home".
Just as I was about to leave, Dr. C came in the room, peered at Dr. J ( he was watching the ultrasound I believe from another room) and told me to get back on the table NOW)
I laid down and he said "we are going to perform an amniocentesis. Your fetus's diaphragm is pushed up very far from the mass in her abdomen. WE are concerned she is going to start filling up with fluid". Right then and there, I was given an amniocentisis to see if her lungs were developed enough to take her out.
ONe week later, I got the news that her lungs were good to go. The next day, I was scheduled for an emergency c section ( where I would be awake) at West penn hospital with doctors who were not with me during my pregnancy.
They let my then husband sit with me the entire time. It took a whole 38 minutes to get her out. Immediately, doctors were buzzing everywhere. They couldn't get her to breathe properly due to all of the swelling in her abdomen. And, I heard a nurse say "Dr. C, this child does not have an anus opening, nor a vagina". Dr. C brought my daughter up to me while I was still strapped to the table and told me to give her a kiss. He walked away and came back and said
give her one more.
An hour later, a Doctor not affiliated with West Penn came in to talk to me. He said he was on his way home and his cell phone went off and he was almost tempted not to answer it. He said when he did answer it and heard Dr. C on the other line saying " we have a child with no anus, no vaginal opening, etc etc and we dont know what it is", that he immediately said
"the child was born with a clocal abnomaly, I will be right there". And, he was right.
Three hours later, my child had a colostomy performed, and I got all the news. Her bowel, bladder and TWO VAGINAS were all connected into one big sac that looked like a clover leaf. She only had one outlet: the bladder opening. She had NO anus opening, and no vaginal opening, which is why the colostomy was needed.
Before he was done talking, the top pediatric urologist surgeon came into my room and told me that I would be required to cath my daughter every four hours probably for the rest of her life, and that she would more than likely need a vesticostomy- an opening in the stomach where the bladder is drawn out. He said her kidneys were horrible due to not being able to pee for 9 months insiude of me. He also said her bladder was the size of a full grown woman. Her bowel was also
very very extended.
That began my rat race. My daughter had one surgery for a colostomy. She then had a PSARVUP which is a HUGE operation called a posterior sagittal ano recto vagino urethro plasty and where they made all of her openings, and seperated the bowel, bladder and vaginas. She still, to this day, has two vaginas inside of her and they cannot cut that tissue away.
They said that clocal abnormaliies is VERY rare, and that she made history as NO clocal child was born with TWO vaginas, ever.
She also had THREE ovaries, and THREE fallopian tubes. Her PSARVUP was 16 hours long. SHe had congestive heart failure more than once and came out with many many holes in her chest from draining of fluid.
She then , after that surgery, had her colostomy closed and a pull through surgery was performed. The doctors 16 hours of work they did on my child "Dissapated". It opened. You could see down to the bone of my child. Due to all the swelling, they could no fix it.
The nurses were picking her up and handling her like crazy. I begged the surgeon to please give me the gauze, tape, fake skin and sitz bath and let ME heal her after two weeks of watching these nurses toss her all around and her wound keep opening more.
I took her home and within one week, I had that childs dissipation more than 70 percent closed. I got the OK then from the surgeon to keep her at home That was the deal. If I couldnt pass 50 percent closed, I couldnt keep her at home.
Shortly after that, her left ureter collapsed. She had to have plastic implanted into her ureter to keep it open. Her kidneys are both VERY badly scarred and she has reflux in both kidneys were the urine backwashs back up the ureter and into the kidneys. She has chronic polynephritis.
After the one ureter implant, the other ureter failed and she was back in surgery. This time, she almost died and it took them one whole week of my daughter being near commatosed for them to realize that the plastic
they had inserted slipped and was not lining up and she was in serious danger of kidney failure. Back to the operating room. All throughout this, understand that there was a constant in my daughter's life:
ANTIBIOTICS. TONS of antibiotics. Every four hours, abx. Every day, abx. You have to think, her bladder and bowel were connected ( bacteria) , her kidneys were weak from all the infecion . She needed the abx to live, and she also was given profalactic abx to try to stop her from getting her UTI's.
My daughter, was hospitalized 25 times for bladder and kidney infections, regardless of the profalacytic abx. One time, she began to have seizures and they thought she had a sepsis infection either from catherization her or from all the infections she had in her.
From 1998-2000, my daughter was home with me seven months, total. She had to have her vesticostomy revised two times due to the bladder pulling down and the urine not spilling out properly.
She had proteus infections, ecoli infections, bowel infections. You name it, she got it. The chicken pox vaccine put her in isolation. Nothing went well with my daughter.
She had feeding tubes, breathing tubes, more tubes then I ever wanted to see.
In just 2004, my daughter finished her final surgery: for now. She had her bladder that was on her tummy pulled back through. THe surgeon did this 1.) because she was medically ready and 2) because kids can be cruel. They were pulling down my daughters pants and laughing at her and saying
"ewww, destiny is 5 years old, and she pees in diapers". She cried, constantly. She was sOOOO happy when she got her first pair of panties. And it wasnt from me, it was from her surgeon.
The glitch? The vesticostomy served as a coffee cup. Remember, a vesticostomy means the bladder is ON the stomach. When her bladder got full ( her coffee cup) , urine would spill out. This was done in an effort to save her kidneys from any further abuse. Her bladder could hold 400 CC'S of urine! Even with cathing, she was still getting
backwash, so the vesticostomy was necessary.
When the doctor was prepared to close her, I begged him to please culture her for spirochetes, for lyme. Interestingly enough, the Doctor looked at me and said
"Jodie, YOU ARE ON TO SOMETHING. I have dealt with cloacal malformation before and I have NEVER seen it this bad and I have at LEAST been able to prevent the UTI's. I have NEVER been able to prevent destiny from her UTI's, all of which assault her body and made her very, very very sick".
The glitch though was this: Once the vesticostomy was gone- it was gone. My daughter had two options: 1.) pee on your own like you should or 2.) if you can't, catherization every day of your life, every four hours. In an effort to help her be able to pee on her own, the doctor gave her "bladder neck surgery" He tightened the end of her bladder with plastic in
an effort to help her squeeze out pee.
AFter surgery, I brought her home and would literally flop on the floor in front of her when she went pee just to see how much was coming out and to hold a cup and measure it. NOt enough. Catherization moved into sight and so did the delivery guys with boxes of cathedars for her.
She was very upset. Two weeks later, I got a call from my daughter's surgeon. Spirochetes were cultured from the inside of her bladder and from the left ureter that was removed when he implanted a new one. ( her left kidney is the WORST)
He told me he would give her some more abx, and the dosage on it was VERY low. I knew he was not going to be able to treat her and I moved her onto a LLMD. Her pediatrician had given her some abx, and some blood work which came back positive for lyme also. Actually, not positive, but she had band 41- good enough.
A year of abx later, and at LOW dose ( I have just moved her up to the big bad dosage through her new LLMD),
I just got the call this morning from her dads house. Destiny woke up, looked at my ex husbands girlfriend and said " I have to pee". This child CANNOT FEEL that she has to urinate, at all. Dads girlfriend just said "oh yeah, lets see what you got"
Destiny went potty and urinated full stream, 300 cc of urine. Dad then catherized her after that and not a DROP was left.
Her latest urine test ( done just last week) showed absolutely no urinary infection... I have NEVER gotten a clean urine on her, ever, not in her six years of life.
Im very very upset that I was not there to see my daughter pee, as strange as that may sound. But, she is making headway. I think Dad finally believes her Lyme diagnosis now as he said to me on the phone "whatever you are doing, KEEP doing it".
I do not know if Lyme caused my daughter's birth defect. I will never know. I do know that they cultured spirochetes from the inside of her. I do know she is making headway. I do know that she probably got this from me,
but I also do know that if III would not have gotten sick, I would have forever thought "oh man, she has ANOTHER UTI", NOT "Oh man, she has lyme". She would have suffered. Her kidneys are inflammed- she has been very close to failure quiet a few times.
But you do not know, what a miracle it is that this child is urinating on her own. RIGHT AFTER surgery, she made one full pee for me, and the surgeon said " DO NOT GET EXICITED, all of the swelling in there is HELPING her urinate.. dont get your hopes up"
Well, they are up. I cannot fix her scars ( although Childrens Hopsital has offered her, in writing, a free lazer scar reduction surgery, at their expense,when she is old enough". I cannot fix her insides. I cannot fix
her kidneys. I cannot take out all of the plastic. I can only give her mineral oil when she can't go potty. I can only soothe her pains when her scar tissue starts to put her into severe pain. I can only watch.
A TICK did this to her, not me, is more like it.
Her school is GREAT. They devised a program for her last year through the nurses where if she had to go catherize herself, she would hold up ONE finger and her teacher would shake her head for approval. Then, she would go to the nurses office, plop down, catherize herself ( Im so proud of her) and let the nurse measure it.
If she has a bowel impaction, through surgeons letters, school approvals, I am to be called and be able to help my daughter "out" without yanking her out of school. She has neurogenic bowel, also.
She wants no one to know she catherizes herself, and her privacy is of utmost importance to them. Once in a while, she has a bowel accident, but they keep clothes and panties and wipes on hand. For that, she is allowed to hold up TWO fingers to her teacher and quietly sneak out for help.
And Mommy is almost there. I am 95 percent better. Last month, my period did NOT flare me at all. No migraine, no NOTHING. My herx was two days long ( and boy it was bad) but only two days compared to 12 days.
My herx this month ( right on time darnit at the 28 day mark) was ONE day long.
I feel *Good* not GREAT, but I feel good.
My remaining symptoms are: Sleep apnea, which I am getting help for and some odd walking intolerance. I CANNOT walk around stores, my yard, up the street, etc, without setting off ALL of my symptoms. My LLMD will help me look into possible adrenal fatigue syndrome or maybe vitamin deficiencies.
Once in a while, my head will freak out and I cant think , or I am dizzy, etc. But thats only ONCE in a while, and I can usualy make it go away with a steam sauna, or more milk thistle, etc.
I owe this to my LLMD, Dr. F for making my daughter pee and all of my past LLMD's for helping me through this, but especially Dr F. He has brought me back in LESS than two months and I am holdin gvery steady.
The real test however, will be WINTER. If I can make it through that without every day symptoms, I will know I am beating this.
For a thought , yeast was the MAJOR hold back in my treatment. I am pretty much garbage gut free now. I have contracted with a bio dentist to remove my amalgrams and have most of the money to pay him. I also had an undiagnosed strep infection in my blood which the treatment for that has helped IMMENSENSLY. ( this is why amoxicillin and biaxin have done WONDERS for me- they both treat that infection). It was NOT recent infection, as the titres rose and rose on me, so treating it
was very imperative. I, also, had another MAJOR underlying problem. Left carotid artery blockage. Once removed, smooth sailing. At the age of 27, I had a MAJOR blockage. NO head pain since, no head pressure since, no nada.
I am FAR from cured, but Im darn close. Oxymoron, huh?
I will still be around to answer posts here and there and my mail box is still filled up daily with people needing help. I will continue to help them. I will continue to help anyone.
Pennsylvania needs another support group. I work for attorneys and I know how to do non profit businesses myself, so that IS in the making. I cannot walk away from lyme completely, although I wish too.
My richy is fighting his butt off. He is 9 and Mentally retarded and austic. I will never stop in the search to bring him to the world as a healthy person. I will try my darndest.
And you know what, maybe this post is all in vain, cause tomorrow, or one minute from now, my health could crap shot on me and I could be back to square one. Thats a shame, but I think lyme will have some serious buttkicking to try to accomplish if it wants to steal my life ever again.
I wish you all the best luck. I will still be here.
UBBFriend: Email this page to someone!
oops! 
Printer-friendly view of this topic