lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear fellow lymies:
I am consumed with worry over an ongoing kidney problem I am having, and need feed back on any similar situations and how it was handled.
Several weeks ago, I started to have the most tenderness in my low back than I have had in years. It puzzled me. I haven't gained weight. Lyme protocal been the same for a while, so why?
I then went into a 10 day cresendo of pain that eventually included pain radiating from my back to my hips, like back labor in child birth.
Then my entire pelvic area felt distended and like it was filled with cement, with great pain. All of this with the back pain included.
I started to run a fever, and after 10 days of a slow crescendo, my urine became cloudy.
It was at that moment that it struck, yes, a kidney infection. I was relieved because I was thinking something this painful could only be cancer.
I phoned my obgyn and relayed what was happening. She prescribed Bactrim over the phone.
I went to the family practice doc on day four of antibiotics to get a culture. He tested my urine and found it to relatively normal. I completed a two week course of high dose bactrim.
This beat back the symptoms as slowly as they grew in the first place, but definitely caused a reversal.
I went back at the end of two weeks on bactrim to report that I was much better, but still aware of the problem. The bactrim beat back %80 of symptoms. He said he would need me to drop the bactrim for at least 4 days to do a culture.
So I went home and dropped the bactrim for 3 days, but got scared as the symptoms again started to build in intensity. I started taking the bactrim on day 4.
ON day 6 or so, I went back and he said that he couldn't do a culture because I started the bactim again. I guess I just didn't have it cemented in my head that I needed to be off the treatment.
So I went the rest of that week thinking about all I know about doctor's needing lab work to make a diagnosis, and their reluctance to treat based on clinical judgement. I went off the bactrim.
I waited 9 days, until I was crumpled on the floor, and food made me immediately want to throw up, chills, temperature starting, exact same pattern of pain in back hips and pelvic area.
On day nine off of bactrim, I HAD to have that culture done so I could take bactrim or some other antibiotic used to treat kidney infections.
I went in and gave a sample for culture. Doc gave me four days of Keflex, until culture comes in. Of course, we could NOT treat based on symptoms.
Culture came in 3 days later, yesterday, NEGATIVE.
Doc referred me to urologist, and I have an appointment for tomorrow morning.
Is it reasonable to see that this is a kidney infection that is resistent to the two antibiotics used thus far?
Could I have a "super bug" in the kidneys from being on antibiotics for so long at a high dose?
Could my lyme antibiotics, zithro - cleocin - malerone, be neutralizing the infection in the urine causing a negative test despite the internal infection?
What is the possibility that my kidneys are damaged?
I am not producing the same amount of urine when the symptoms are really bad, my belly is severely extended and hard.
My bun test came back completely normal, despite all of this trauma.
My urine has not gone cloudy again since I first started on bactrim.
Can anyone relate a similar experience, hopefully with a good outcome.
I CANNOT TAKE FLUROQUINOLONE antibiotics due to having them in the past and suffering severe tendon and neuro damage that took me two years to recover from. Cipro and Levaquin is routinely handed out for tough to treat kidney infections, but I cannot have this.
Please help as I am miserable and extremely worried.
lymewreck
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I cannot speak from experience but had a sister have a similar thing happen to her. She ended up with a kidney infection in spite of normal urine tests. It is a good thing that you are seeing a urologist in the morning. They will help you.
I am sorry that you are going through this. I know that you are feeling terrble. And no, my sister's kidneys were fine and not damaged.
Please keep us posted on what the new doc says.
Best, Karen
Posts: 1685 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Dear LymeWreck, It may be difficult to believe, but what you describe can also be the main symptoms of interstitial cystitis.
Ironically, I am just now experiencing a real urinary tract infection but I have learned to tell the difference after about 8 years.
Interstitical cystitis (or IC) can present with the symptoms you describe. I got the diagnosis after a number of episodes where I was SURE I had an infection but cultures said I did not.
I was referred to a urologist who suggested a DX of IC right away. I found out that my symptoms are the norm for a new DX.
At my first appt., the urologist dialated my ureter and about a cup of urine poured out. My bladder had clamped into a spasm, keeping my bladder irritated and never totally emptying urine. It was also excrutiatingly painful.
IC by definition is irritation of the bladder lining. A blood occult test in the office usually is positive for blood in the urine but not noticable with the naked eye. The urine can also get cloudy and smell "sour" over a period of days without the later pain.
Having had lots of urinary tract infections, I was assuming that I just had another one and of course they are not FUN. What I learned is that IC is not fun either
and can actually be worse because antibiotics do not clear it.
Eventually, I had to go to the hospital for an outpatient procedure where I was put to sleep and my bladder was instilled with fluid so that the doctor could view it via microscope and see the small tears, irritations. I believe he also took a small biopsy.
The treatment I have had on an ongoing basis is hydroxyzine, an antihistimine which helps prevent smooth muscle tissue from spasming. I am not supposed to lift heavy objects and irritation of
the bladder can also occur through sexual intercourse which is awful all by itself. The last time I had an outbreak of symptoms, I had to see the urologist who again gradually dialated
the neck to my bladder (won't tell you about the procedure unless you want me to IM you) and then my bladder was instilled with heparin which I was told to hold for as long as possible while laying on the exam table.
I returned to the doctor weekly for this procedure. I was told that if I continued to experience problems I would be taught to instill my bladder with heparin myself at home.
That was enough to get me to take hydroxyzine every night to prevent another outbreak! Can't imagine having to do that procedure myself but many do.
I hope this helps. Be sure to ask your urologist about IC when you have your appt. As I have recently learned, IC frequently is found in people with Lyme disease.
It really doesn't matter if your urologist believes in chronic Lyme or not. I think the treatment is the same and no antibiotics help. I have also learned that every time I have to give
a urine specimen at a doctor's office, they will always find blood in it. I just tell them of my IC DX.
I am sorry you are having such pain. It is some of the worst there is.....and in IC, the pain mimics a terrible UTI and there can be fever, sweats, etc. I really hope you DON'T have IC,
but if you do, there is much support for it. You can GOOGLE interstitial cystitis and find out everything you ought to know. Sorry I don't have the links to send you.....lost them with my last computer.
Take care,
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Lymewreck, First let me tell you that the kidneys are REMARKABLY able to heal themselves once damaged. they are one of the most resilient organs in your body. KIDNEYS ROCK! SO you can start to take some deep breaths and try to keep in mind that one can have a kidney infection for a long time and still retain all kidney function after some period of healing.
I know all of this because--long story short---my ureter got burned when they took out my ovary in June. We didnt know this till I got hydronephrosis--swelling of the kidneys---coz the ureter closed down and the urine couldnt go thru. I ended up having 3 different surgeries and 3 different stents, and during one surgery my ureter tore and I ended up BACK at the hospital with peritonitis. and then I was home for a month with a urinalry catheter and then back in the hopsital when they tried to remove it and my bladder wouldnt function.
I really did make that short. I am awaiting more surgery in 2 weeks to try to open up the ureter again.
ANYHOOOO----my urologist has taught me A LOT about urinary stuff. And the kidney healing thing is really important to help ease your mind.
Now---I agree with Janet---the symptoms DO sound like IC. that was one thing I was considering as I read your post. I only peripherally know IC, so I am not the expert there.
The other thing is urinary RETENTION. Usually with urinary retention there is an underlying cause like surgery or a stent or something....so I am not sure why someone would present with urinary retention out of the blue. It DOES hurt an awful lot.
Have you had any surgeries lately--even if you think they are unrelated? Do you have your appenix? reason I ask is appendix can get infected (not the full rupture) and cause your pelvic organs to do not normal things like your bladder not fully empty.
They havent done a CT scan or an ULTRASOUND??? At the very least they should have done an ultrasound. You can walk into any urgent care or ER and request this saying you have pain in the kidney area. They will be able to rule out hydronephrosis, and to some degree infection and even (to a smaller degree) kidney stones....which is a whole OTHER conversation. And they can US your bladder to tell if you are retaining.
YOu mention BUN so I am going to assume that you had a CBC, and CMP? if that is true then if you have elevated creatinin or elevated WBC counts THEN you are looking at an infection. What are your counts? If you havent gotten this...again, urgent care.
You know---they should have done a catheterized urine sample and they CAN culture it even IF you are on abx. DUH!! It takes longer, but if anything grows then you have an infection in SPITE of the abx you are on or the abx you are on dont effect that bacterium.
am I boring you yet?
The bestest bestest thing in the world is to sit in a hot shower or if you dont give a darn sit in a hot bath and let yourself relax and relax and pee and pee. You will find that certain positions or certain motions will help you void better.
I hope this helps some. You take care now, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I agree this does sound like it very well could be IC. :-( i have IC, was diagnosed on May 17th 2006 with the procedure mentioned above.
When mine first started I was peeing A LOT (atleast 12 times before noon and that was a good day)....lower back pain which i thought was kidneys and lower left pelvic pain. I felt a tugging pain too and it hurt to have anything touch my stomach over my bladder.
Like Trails said get yourself a good catscan with contrast of your abdomin and kidneys. I had mine done at the ER, when i was in so much pain, but your dr could order this for you as well.
I would ask for one.
Also keep in mind not all bacteria will culture at the lab......some of the bacteria just dont like to grow in that environment or may take more then the two days allowed to grow.
try heating pads on your lower back for the pain, see if that helps.
I used to use the thermacare heat wraps....at my worst i wore one everyday and the pelvic ones for the pain in the front.
hang in there and let us know how the appointment goes.
I still have IC, and it is my main symptom now.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear Everyone:
I feel so supported by all of your responses. Thank God for lyme net. Bless you all.
I'll try to remember some of the questions you asked. I did have complete blood work which showed no abnormality. I have a radiologist friend who did a scan for me "under the table" and sat with me in his office for one hour looking at it from every angle. No abnormalities seen, no kidney stones.
Antibiotics reduce the pain, but do not clear it. This leads me to believe that somewhere along the way, a infection is involved, even if it turns out to be IC. I must now research IC because I never heard of this.
I don't know if I answered everything. I see the doc in an hour and a half and have to run get a shower. I'll keep you posted, and if you can think of anything else, please send it along.
God Bless all of you good people.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
geniveve
Unregistered
posted
mary,i too, had IC. man, was i ill. course i had a wonderful Primary at that time who immediately diagnosed me. course it helped that my eyes were practically yellow, my skin was orange, and my temp was about 102, shaking, very very ill.
he took one look, diagnosed me and sent me immediately to the hospital. i had to have surgery because my urethra was completed closed due to infection. they had to open that up, then they burned it with some kind of chemical, can't remember what, the rationale being that scar tissue does not get infected. they opened up the neck. my bladder was in very bad shape.
i was in the hospital for about 2 weeks in total.
keep an eye on this. i hope never to be that ill again.
isn't this board great??? my best to you.
IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. folks. I went to the urologist yesterday. He did an exam which included a urine sample and inserting a cathetar to determine if I was not emptying. He determined that I was emptying o.k. I told him I am not going to the bathroom as much as I used to.
He did obeserve two things. One is that he had NEVER seen a bladder closed to tight her struggled to get the catheter in. He kept making declarations of surprise and shock.
Secondly, I have protein in my urine, which has been the case since the beginning of this ordeal.
The CT scan of my abdomen looks normal, except that the pancreas is decreased in size due to obesity. And the uterus looks all lumpy, probably fibroids.
I have a return appointment in three weeks. I have to due a 24 hour urine catch also.
He feels sure there is no IC, which we asked him about.
In the meantime, I feel sure I am dying. The pain is definitely moved into m y chest which feels extreme pressure with small irregularities in my heart beat. It has moved up my spine and my head is throbbing. My entire abdomen is extended and hard, and very sore, and my arms are now feeling it move in there.
What kind of doctor is going to investigate the my organs and address the abdominal wall? I don't know this.
I'm sure that this will kill me if we don't get it diagnosed.
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
posted
Please keep us posted and I hope they can help you. I have kidney pain and spill protein in the urine and exhibit signs of nephrotic syndrome with semi bloated ankles and calves-I am hopeing to get some help from my primary care doc on Wednesday.
-------------------- neardeath Posts: 18 | From Raleigh, NC | Registered: Mar 2005
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Just uncovered this drug information. I ran across info on drug possibly causing chronic pancreatic inflammation.
My symptoms look like a pretty good match for pancreatic inflammatin. But one thing did not line up.
But it did say certain drugs could cause the pancreatic inflammation, including Bactrim. I looked up Bactrim and found the below results.
This lead me to look up Malerone, which I am also taking at a very high dose, and found the following. Bactrim is discussed first, and then Malerone.
Precautions While Using Bactrim
It is very important that your doctor check your progress at regular visits. This medicine may cause blood problems, especially if it is taken for a long time.
If your symptoms do not improve within a few days, or if they become worse, check with your doctor.
Sulfonamides may cause blood problems. These problems may result in a greater chance of certain infections, slow healing, and bleeding of the gums. Therefore, you should be careful when using regular toothbrushes, dental floss, and toothpicks. Dental work should be delayed until your blood counts have returned to normal. Check with your medical doctor or dentist if you have any questions about proper oral hygiene (mouth care) during treatment.
Side Effects of This MedicineReturn to top Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Check with your doctor immediately if any of the following side effects occur:
More common Itching; skin rash
Less common Aching of joints and muscles; difficulty in swallowing; pale skin; redness, blistering, peeling, or loosening of skin; sore throat and fever; unusual bleeding or bruising ; unusual tiredness or weakness; yellow eyes or skin
Rare Abdominal or stomach cramps and pain (severe); abdominal tenderness; blood in urine; diarrhea (watery and severe), which may also be bloody; greatly increased or decreased frequency of urination or amount of urine; increased thirst; lower back pain; mood or mental changes; pain or burning while urinating; swelling of front part of neck
Some of the above side effects (severe abdominal or stomach cramps and pain, and watery and severe diarrhea, which may also be bloody) may also occur up to several weeks after you stop taking any of these medicines.
Also, check with your doctor as soon as possible if the following side effect occurs:
More common Diarrhea; dizziness; headache; loss of appetite; nausea or vomiting; tiredness
Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.
Other medicines--Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary. When you are taking sulfonamides, it is especially important that your health care professional knows if you are taking any of the following:
Acetaminophen (e.g., Tylenol) (with long-term, high-dose use) or Amiodarone (e.g., Cordarone) or Anabolic steroids (nandrolone [e.g., Anabolin], oxandrolone [e.g., Anavar], oxymetholone [e.g., Anadrol], stanozolol [e.g., Winstrol]) or Androgens (male hormones) or Antithyroid agents (medicine for overactive thyroid) or Carbamazepine (e.g., Tegretol) or Carmustine (e.g., BiCNU) or Chloroquine (e.g., Aralen) or Dantrolene (e.g., Dantrium) or Daunorubicin (e.g., Cerubidine) or Disulfiram (e.g., Antabuse) or Divalproex (e.g., Depakote) or Estrogens (female hormones) or Etretinate (e.g., Tegison) or Gold salts (medicine for arthritis) or Hydroxychloroquine (e.g., Plaquenil) or Mercaptopurine (e.g., Purinethol) or Naltrexone (e.g., Trexan) (with long-term, high-dose use) or Oral contraceptives (birth control pills) containing estrogens or Other anti-infectives by mouth or by injection (medicine for infection) or Phenothiazines (acetophenazine [e.g., Tindal], chlorpromazine [e.g., Thorazine], fluphenazine [e.g., Prolixin], mesoridazine [e.g., Serentil], perphenazine [e.g., Trilafon], prochlorperazine [e.g., Compazine], promazine [e.g., Sparine], promethazine [e.g., Phenergan], thioridazine [e.g., Mellaril], trifluoperazine [e.g., Stelazine], triflupromazine [e.g., Vesprin], trimeprazine [e.g., Temaril]) or Plicamycin (e.g., Mithracin) or Valproic acid (e.g., Depakene)--Use of sulfonamides with these medicines may increase the chance of side effects affecting the liver Acetohydroxamic acid (e.g., Lithostat) or Dapsone or Furazolidone (e.g., Furoxone) or Nitrofurantoin (e.g., Furadantin) or Primaquine or Procainamide (e.g., Pronestyl) or Quinidine (e.g., Quinidex) or Quinine (e.g., Quinamm) or Sulfoxone (e.g., Diasone) or Vitamin K (e.g., AquaMEPHYTON, Synkayvite)--Use of sulfonamides with these medicines may increase the chance of side effects affecting the blood Anticoagulants (blood thinners) or Ethotoin (e.g., Peganone) or Mephenytoin (e.g., Mesantoin)--Use of sulfonamides with these medicines may increase the chance of side effects of these medicines Antidiabetics, oral (diabetes medicine you take by mouth)--Use of oral antidiabetics with sulfonamides may increase the chance of side effects affecting the blood and/or the side effects of oral antidiabetics Methenamine (e.g., Mandelamine)--Use of this medicine with sulfonamides may increase the chance of side effects of sulfonamides Methotrexate (e.g., Mexate) or Phenytoin (e.g., Dilantin)--Use of these medicines with sulfonamides may increase the chance of side effects affecting the liver and/or the side effects of these medicines Methyldopa (e.g., Aldomet)--Use of methyldopa with sulfonamides may increase the chance of side effects affecting the liver and/or the blood I also take a drug for babesia named Malerone: just found the following in a list of potential serious return to top
THIS MEDICINE MAY CAUSE dizziness. Do not drive, operate machinery, or do THIS MEDICINE MAY CAUSE vomiting.. If it persists or becomes severe, contact your doctor.
Possible side effects of Malerone:
SIDE EFFECTS that may occur while taking this medicine include rash, nausea, diarrhea, headache, vomiting, fever, difficulty sleeping, stomach pain, mouth sores, or swelling or soreness of the mouth or tongue. If they continue or are bothersome, check with your doctor. CONTACT YOUR DOCTOR IMMEDIATELY if you experience loss of appetite, weight loss, unusual fatigue, yellowing of the eyes or skin, dark urine, dizziness, severe vomiting or diarrhea, fever, muscle or back pains. AN ALLERGIC REACTION TO THIS MEDICINE IS UNLIKELY, but seek immediate medical attention if it occurs. Symptoms of an allergic reaction include rash, itching, swelling, severe dizziness, or trouble breathing. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist. side effects:
Beware! Maybe this is what is wrong with me, very high doses of Bactrim and very high doses of Malone, while taking diabetic medication and plaquenil.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
wow--nice find. your situation sounds miserable. I am sorry for everything you are going thru and hope one of the docs can get to the bottom of this QUICKLY.
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
posted
i just lost an extended reply, so heres the short of it.
some tips, but check with your doc on combining these with meds.:
search various enzyme formulations and effects on kidneys to promote circulation,in and out of the kidneys, and adrenal glands which sit atop teh kidneys.
to breakup immune complexes, circulating complexes, and complexes embedded in tissues... that may be lodged in the kidneys,adrenals, and elsewhere. this promotes circulation.
wobenzym helped me considerably,with spasm,pain,hotness, coolness, and stings, but i was not on abx at the time.
as with wobenzymem above, bromelain helped me considerably with kidney pain,and other sensations.
bromelain, alone, helped me with kidney pain, and other kidny sensations as a result of taking oral ceftin.
google and medline search terms: "bromelain and kidney"
"systemic enzyme therapy and kidney"
for starters, http://www.mucos.de there are many other sites on this, topic, including on this site. see archive section.
almost any enzyme formulation should help.
Posts: 2708 | Registered: Feb 2005
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thank you for your continued responses, everyone. I now have more information to look into thanks to all of you.
I did take myself off the bactrim and malerone to see what calms down. The "pain package" that has been slamming me was definitely affected for the better, so it seems to me I am on the right track.
However, there is much residual recovery and I don't know how long it will take. What is not gone in one month I will consider an ongoing problem that needs more treatment. In the meantime, I will pursue cardiac workup and endocrinologist (sp?), and possibly nephrologist.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
good luck lymewreck and thanks for updating us---let us know as you move thru this please!
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
Printer-friendly view of this topic