Antibiotics Treatment

[Vampireness]

I mentioned the last time I'm going to get my report from the hospital and see if they have made a mistake and it looks like they have.

07- Feb-2003

Recieved Date/Time 07/02/03 1508

Urine Culture
URINE CULTURE [024148]

MIXED BACTERIAL GROWTH
(VIABLE COUNT <=50,000 CFU/ML)

Reporting Date: 08/02/03


End of Report

17-Feb-2003

Recieved Date/Time 17/02/03 1821

Urine Culture
URINE CULTURE [BA147207]

NO SIGNIFICANT BACTERIAL GROWTH
(VIABLE COUNT , 10,000 CFU/ML)

Reporting Date: 18/02/03

Specimen Comment
SOURCE: URINE


End of Report

11-Jun-2004

Received Date/Time 11/06/04 1619

Additional Info Verified Section: CGH Microbiology Lab

Urine Culture

Urine Sample: Urine
Viable Count Urine:
NO SIGNIFICANT BACTERIAL GROWTH
(Viable Count <10,000 CFU/ML)


End of Report

02-Jul-2004

Recieved Date/Time 02/07/04 1331

Additional Info Verified Section: CGH Microbiology Lab

Urine Culture

Urine Sample: Urine
Viable Count Urine: NO BACTERIAL GROWTH (Viable Count <1,000 CFU/ML)


End of Report


14-Dec-2004

Reporting Information Date/Time: 12/12/2004 1448
Senior Consultant: Dr Tan Ai Ling
Laboratory: SGH Diagnostic Bacteriology

Recived Date/Time 14/12/2004 1836

Speciment Comment

SOURCE: URINE
SPEC DESCRIPTION:

Urine Culture

URINE CULTURE

No bacterial growth
(viable count <1,000 cfu/ml)

DATE OF REPORTING: 15/12/04


End of Report

10-May-2005

Reporting Information Date/Time: 12/05/2005 1002
Senior Consultant: Dr Tan Ai Ling
Laboratory: SGH Diagnostic Bacteriology

Recieved Date/Time 10/05/2005 1459

Speciment Comment

SOURCE: URINE
SPEC DESCRIPTION:

Urine Culture

URINE CULTURE

Organism 1 ESCHERIACHIA COLI
VIABLE COUNT >100,000 cfu/mL

E COLI
AMPICILLIN S
AMOX/CLAVULANIC ACID S
PIPERACILLIN/TAZOBACTAM S
CEPHALOTHIN S
CEFTRIAXONE S
CEFEPIME S
AZTREONAM S
GENTAMICIN S
NALIDIXIC ACID S
CIPROFLOXACIN S
COTRIMOXAZOLE S
NITROFURANTOIN S

DATE OF REPORTING: 12/05/05


End of Report

16-Jun-2005

Reporting Information Date/Time: 17/06/2005 1033
Senior Consultant: Dr Mavis Yeo
Laboratory: SGH Diagnostic Bacteriology

Recieved Date/Time 16/06/2005 1431

Specimen Comment

SOURCE: URINE
SPEC DESCRIPTION:

Urine Culture

URINE CULTURE

No bacterial growth
(viable count <1,000 cfu/ml)

DATE OF REPORTING: 17/06/05


End of Report


Looks like they left out the bacteria since there was not enough of a colony count especially the first one mixed bacterial growth....all they told me was no infection and so no treatment and I was sent home and I didnt know about colony count and all...how unlucky.

[Katrina]

interesting. Thanks

[Vampireness]

I also got a report of my endoscopy. So I don't know if it's Gastritis like the Dr. wrote or what he told me in person, which was that I have IBS. And not Gastritis, I hate all this misdiagnosis. Dunno which to believe but all this didnt start before Nitrofurantoin antibiotic. (The stomach pains and later burning)

06-Jun-2006

Type of Report Gastroscopy Report

Operation Started 06/6/2006 11.20
Date/Time

Procedure Code SF102Y

First Endoscopist MCR 05565D

First Endoscopist MESENAS STEVEN JOSEPH
Name

Priority of Procedure Elective

Pre-Operative PUD
Diagnosis

Post Procedure OTHER SPECIFIED GASTRITIS
Diagnosis

Type of Anaesthesia IV SEDATION

Procedure
ESOPHAGOSCOPY, GASTROSCOPY, DUOENOSCOPY WITH/WITHOUT BIOPSY


Findings Summary

Oesophagus [I]Normal
Cardia Normal
Fundus Normal
Lesser Curve Normal
Greater Curve Normal
Incisura Normal
Body Normal
Antrum GASTRITIS
Pylorus Normal
Duodenal Bulb Normal
D2(2nd Part Duodenum) Normal
Stoma



Summary of Procedure
GASTRITIS.CLOTEST.


End of Report


Katrina - NP, hopefully others can see or learn that hospitals do make mistakes and to seek for better testing.

[hollipop]

Oh, don't get me started on hospital labs. :evilsmile Once I was in the hospital they got my blood labs mixed with someone else's and they thought I was dying with some liver disease! Ugh! They had to retest me every hour on the hour....I had no sleep all night! :cussing:

[Vampireness]

Oh, don't get me started on hospital labs. :evilsmile Once I was in the hospital they got my blood labs mixed with someone else's and they thought I was dying with some liver disease! Ugh! They had to retest me every hour on the hour....I had no sleep all night! :cussing:

ARE YOU BEING SERIOUS???????????????????
Woahhhh........
Which reminds me that I wanted to put up but I regret not buying the paper and reading the whole story but it was on the Singapore paper....its about the Dr. who prescribed this 82 years old woman a wrong dosage and well....she died....................

:cussing:in hospitals

[hollipop]

I have a cousin that went to the ER for abdominal pain, and whatever they prescribed, a nurse gave 10x the amount by mistake, and it killed her, too. At only 42 years old! I won't go to that hospital now.

[cathleen]

I have had my urine tested numerous times, and it came back negative every time. This time, my doctor sent it to United, to do the Urine Broth, and it came back positive for Strep D! I am going to the dr. today, to get an antibiotic to kill it. I hope it works. The Strep D was shown to be sensitive to Amoxicillian and Vancomycin.

[hollipop]

Cathleen - that is awesome! Not that you have an infection, but that they found something that can be cured! I sure hope this is your answer. I also have Strep D and will start the amoxicillin when I'm out of Cipro (about a week), so we can be amoxy-buddies! :hi:

[cathleen]

Yes, I agree, I am so thankful that there is something to treat!!!!

Strep D showed resistant to Cipro, on my lab report.


I wonder how many of us are showing Strep D, who have these symptoms?

cathleen

[Vampireness]

I hope this thread doesnt turn into Strep D discussion because that seems to be the case for some but people like me and a few others have GBS (Group B Strep) and theres no discussion for that, and feeling uninformed etc.

Cathleen so yeah thats great you found infection. As you can see the above report they told me no infection and send me back home. The only time I was given antis was the E.coli positive result.

Hollipop That is terrible about your cousin.....and really scary and I'm sorry.....
What happened to your email by the way? I sent you email not getting a response and I have cleared up my inbox.

[hollipop]

Cathleen, according to some previous treatments with Cipro, it was not enough to totally rid me of the infection, so I'm going on amoxicillin. But the Cipro is good enough for the E. Coli, so I figured that I might as well do the course of it first, then switch, since my doctor is in agreement. It appears that amox was the best for others that were treated for Strep D, too, so you may want to talk to your doctor about that. Martha was the one who really helped me understand that issue. You may want to PM her if she doesn't pop on here soon.

Hey V, your email must be slow. I responded, girlie! :smile tee Hang in there...you should be getting a call around 5:30pm or so (that's about 4 hours from now). That's what time she usually calls me, but Mondays are probably more hectic, so try to be patient with her. {{{hugs****** Are you feeling any better today?

[Vampireness]

Hollipop - no.....I didnt get any replies at all I sent email two days ago...altogether two emails or so to you.....Did you send it to the correct email address?? 5.30a.m in the morning???? LOL Thats probably what time it's going to be here, since I'm 12hours apart. Feeling ....not too sure....I am taking one pill Bactrim so sometimes I feel ok sometimes I don't......most of the time...not so...

[hollipop]

Hmmm...that's weird! Sorry about that. I'm just emailing away thinking you are receiving them! :lmao: I'm PMing you now.:pray: Glad you are getting some little relief.

[cathleen]

Hollipop, thanks for the info on Amox. I did PM MarthaF. Haven't heard back yet. I wonder how long to take it??? and What dosage???

Vampireness, I am sorry they are not finding infection for you. I would be devastated if they had not found infection. I almost couldn't open the envelope to find out. I hope they find something for you soon, and that maybe this icn forum can help you. I was going to just start trying different antibiotics anyway, even if it had come back negative. I used to have a stomach ulcer, and they said, oh, it's not the kind that is caused by bacteria (they did a culture) and I took the antibiotic for it anyway, and I have never had another ulcer. It's been 8 years now, since I took the antibiotic, and have never had an ulcer recurrence. They have since proven that all stomach ulcers are caused by bacteria. Maybe this story can help you.

Cathleen

[Vampireness]

Vampireness, I am sorry they are not finding infection for you. I would be devastated if they had not found infection. I almost couldn't open the envelope to find out. I hope they find something for you soon, and that maybe this icn forum can help you. I was going to just start trying different antibiotics anyway, even if it had come back negative. I used to have a stomach ulcer, and they said, oh, it's not the kind that is caused by bacteria (they did a culture) and I took the antibiotic for it anyway, and I have never had another ulcer. It's been 8 years now, since I took the antibiotic, and have never had an ulcer recurrence. They have since proven that all stomach ulcers are caused by bacteria. Maybe this story can help you.

Cathleen

These were my past culture results...my lastest result from United Medical Lab has showed:

Klebsiella Pneumoniae and Group B Strep

I just can't seem to get treatment or the right treatment.
That does explain something...the stomach ulcer.

About your Group D strep, it takes couple months to treat according to Martha and Dr. F. Dr. F suggests Amoxycillin for Streps especially Group D thats what Martha would say.
I think I saw you state that your Group D strep works for two antibiotics...wow so they must be really resistant to alots huh.
So depending on the sensivity and your weight and severity of infection, the dosage has to be decided. Also would explain the length of time needed for treatment.

[Vampireness]

Hmmm...that's weird! Sorry about that. I'm just emailing away thinking you are receiving them! :lmao: I'm PMing you now.:pray: Glad you are getting some little relief.


LMAO thats funny LOL Yeah I finally got it.
Yeah I am glad to...however I feel strong urges and I cant sleep too long because I feel like I'm going to wet the bed.....
There is pain but not too strong....

[hollipop]

Vampireness - oh gosh...that doesn't sound like fun. I've never really had urgency before, just the pain like glass rolling around. I guess I'm "lucky", although when I've had a major flare, I certainly didn't feel lucky at all...

Cathleen - I was prescribed 250mg amoxicillin three times/day.

[Vampireness]

Yeah I just give up on sleeping because of that cuz the urge is too strong and it interrupts with my sleep so I stay awake so that I go to the restroom and you know....not pee on the bed.

I need to come up with a symptoms journal other than this thread. I feel so lazy and exhausted to do that with all this frequency and all.

[cathleen]

Vampireness,
Have you tried baking soda in drinking water, like 1/8 teasp in 4 oz of water for the frequency? It works for me after about 30 mins after I drink it.

[MarthaF]

Will just throw in my two cents on the subject. What seems to be the case so far is that Strep Group D is the most common pathogen. It is now known as Enterococcus faecalis. But also there are others that have been found by the broth cultures - just not as often. The key is that the traditional labs seem to miss so much or do not take it seriously if it is in low numbers. Dr. Fugazzotto helped us understand that with some species even a low colony count can be pathogenic. But we also know that to a lesser degree these are found in asymptomatic women without a problem. There is still more research to be done since it is hard to pin down what makes some of us susceptible.

Also, I always recommend seeing a professional to treat and follow you. Not everyone is the same and some require different antibiotics for the same species, depending on the sensitivity report and other variables. Ruth **** is the only one I know who specializes in this treatment and many MDs are not used to using long term antibiotics which makes it difficult.

I have a lot of respect for antibiotics and do not take them lightly. It is just too bad that we don't have more labs and practitioners who are familiar with these chronic infections which many of us have. We also need more research and we now have one study completed and hopefully it will spur more. I think, or hope, that if these infections were found earlier and treatment started right away it would not take so long to treat them. Many of you are catching them earlier than in the old days and that should help.

Hope this helps.

Martha

[Vampireness]

Cathleen - No I stopped the baking powder thing lol but I took one teaspoon baking powder to one cup water LOL

It seemed to help with the pain or something not sure...but will do it...I just feel weird eating baking ingredients LOL

Cephalexin Update and Treatment Update

Ok so FINALLY after so many days I talked to Ruth (I had to call her instead of wait for her email) and she said Cephalexin shouldn't give me a problem and that it's used for skin, ear and bone infections.

I told her about my stomach since it causes stomach upset and she said it's given out over there and should not be a problem. I hope shes right!!!!!

So I am STILL waiting for her to give email me the letter for my doctor so that I can take it to them and ask for the antibiotics. But will wait for Dr.Karen too holli since Ruth seems so occupied to keep up with my treatment.

After Wednesday's consultation with Ruth on the phone and her telling me she will get back to me within two days, she asked me to give her another two days......and blah I just hates the delay she puts me through.

[Vampireness]

I wanted to put something while I was typing in another thread but the topic did not fit so much.

While telling another about my cultures coming back negative and being told they cant give me anything and sent me back home. They did however give me loads of painkillers (paracentamol)

My god the amount they prescription is like.....unbelievable.......
It was like 50 cents or a dollar fifty for about 100 tablets......
And thats actually so cheap because in stores you buy ten tablets for 35 cents.
They cant give antis but they will give you painkillers that easily, I think its crazy! Painkillers take lifes away if overdosed and cause bad side effects, bleeding etc......stomach problems etc
And its still should without prescription and antis are hardly given away when infection is indeed found because of the fear of resistance.

Atleast I'm not in a situation like I was before dependant on painkillers because my kidney and all hurt too much only to get cultured and find out I have infection and it wasnt a flare. I took painkillers everyday and several times a day. My stomach problem could be because of that but I didnt feel nothing but up till I took Nitrofurantoin that caused the worse stomach pains ever. I did stop painkillers long time ago when I took Elmiron and after that I have just stayed away from painkillers and will manage with pain and if its really really painful I took pyridium irregurarly for the most up to three days and stopped. Antibiotics are so helpful for me and yet I cant get it....:cussing:

[hollipop]

Martha - again, you rock! :hi: One of these days we are going to have to get together so you can explain biofilms and such to me. :bow:

Hey V - I'm guessing that my doctor hasn't called yet. DH said that she may not get the mail until tomorrow, but who knows...it's only going about 25 miles! I should have just driven that letter over there. I'll call Nelda tomorrow and see if they got it for you. I'll be out of the "office" most of the day, but I'll have my cell phone with me. I should be able to access my email at my client's office, too. I hope you get some rest, sweetie!

[Vampireness]

hollipop - No she didn't call me....I was waiting lol I was scared to go to the restroom just in case I miss the call since my phone is mostly on silent but on vibration and I keep it infront of me, I turned on the volume however lol.

Will wait till she calls me. Thank you very much!!!!

[Romans8:28]

Went to my doctor today. My broth results were still not in so am to hear from him later this week. He seems to be leaning toward some heavy yet thankfully they somehow may have some oral antibotics. He was encouraging about taking the offer of using the microcurrent along with it. I should hear more later this week!

Right afterward my Gp called and my PAP came back abnormal. She said it was only slightly and normally they woulld just redo it in 2-3 months but since I still have alot of pain we felt I needed to make sure this was not the cause before doing mega antibiotics. So she is refering me to not only the Internal Dr.,, but now I get to go see the gyn... The whole reason I went to her was so I didn't have to get up close and person with another doctor, especailly male for a few years, a:headbang: .., just love those pelvics:(!!! There are many more pleasant things to do to cause a flare a:wink:

Holly:
biofilms are mulitbacterial colonies that attach or adhere to a surface and create fortified cities. Basically the bacteria get a foot hold and recruit other bacteria into a matrix (a thing which forms to enclose), so basically a holding place where they can defend themselves. Here they are protected from antibiotics and our natural defenses. The also slow down their growth rate and change their gene composition. Many bacteria can form biofilms and they are VERY difficult to culture for. The article I posted on the other link showed they have now connected biofilms with chronic ear infections!

We are also now learning about the intracelluar bacteria. These are small colony bacteria that often remain and persist within human cells. They are not as susceptible to antibiotics and are being researched as a cause of chronic infections.

Shelly

[Katrina]

((((Shelly))))))Not much fun but hopefully it will help you!:grouphug: You are so right, there are much more fun things that cause flares lol :grouphug:

[hollipop]

Oh Shelly. You aren't haven't much fun, are you. Hang in there. I will pray that your pap was a fluke and that you can start your treatment asap. Let us know when that broth culture comes back! Oh, and thanks for the info on the biofilms. That makes more sense now. I guess that's similar to what was going on in my kidneys, because when they broke open my stone in pathology, they found a colony of bacteria living there, nice a cozy. Ugh! I'm so glad the sauna helped me purge those little suckers! :bow:

[Vampireness]

Ruth finally responded with the MD letters but she also changed my prescription from Cephalexin to Cefaclor because it's a better antibiotic in that family.

I have emailed the gynaecologist, since I know her email, one longggggggggggggggggggggggggggggggggg letter from me and another from Ruth with drug recommendations and a brief explationation about broth.

Will wait to hear from her and I got to sent one other by post and lastly I got to go down in person for this last MD because I don't think his that kind who will respond back about the outcome etc.


Shelly - I hope your broth comes back in and that the pap smear turns out well for you when you do take it.

[Romans8:28]

Thanks everyone, didn't recieve these in my e-mail so just came in here to check!
I did get a copy of my pap smear report and it says atypical squamous cells. So I looked it up: squamous just describes the shape, scaley flat cells, atypical is characteristic of inflammation and would be considered a class 2 by my midwife books. Since we did an amusement park the Friday before, I test on a Mon, I believe that is the issue but we will have to do that wonder test again to see..:( so warning don't do a pap after anything strenous:)! They only watch these because they can lead to cancer cells if the inflammation is not relieved.



Also found out today I get to do both new doctors the same week.. oh boy, my favorite thing a:headbang:


Vampireness:
so glad you heard from Ruth and hopefully your doctors will respond to you!!
hope your feeling better soon.

Hollihop:
exactly biofilms are often harboured it stones. I've found many articles on it!
Just most people don't get the "priveledge" of having the quantitiy I have, so once the stone is gone the infection can be controlled. This very well could be why you've responded so well to the antibiotics! You should be able to lead and infection and maybe even anitbiotic free life in a short amount of time!

Katrina:
How are you doing? I know I've ask before but now can't get my regular probiotics so before I do these heavy antibiotics want the best one..,
so once again will you give me the info on the probiotics you've found and contact info? How's your herb garden doing?

Shelly

[Romans8:28]

PS HAD ONE MORE THOUGHT/IDEA & i WANT YA'LL'S THOUGHTS:


Everytime they do a pelvic I have so much bladder pain I can't tell if anything else hurts. I thought I might somehow do a rescue instill before the exam to numb the bladder.., So now question how do I do that?

if I do it in advance, can't do the urine test...,

The picture of going to this new doctor, for the first time and asking him if I can instill meds into my bladder before he starts is also a little funny??
Oh yeah and don't use latex gloves and only MSM gel..., yeah love doing new doctors...,:)!

THOUGHT?????

[Vampireness]

Dear Serene Ang,


I have been through so many doctors and frankly I am really tired of the process. But I can't help thinking that you would have the heart to help me, since you have been really understanding and would take the time to talk to me (in person or on the phone) and treat me as a patient with feelings and not another number. I haven't had such experience with many doctors before, usually I'm ignored or they wouldn't speak to me on the phone about my concerns, but you have taken the time so I am writing you.

Dr. **** (my previous urologist) in my opinion and according to test results and has made a big mistake on my diagnosis. Yes, I'm pretty positive, she has maded a wrong diagnosis. My symptoms first started with one infection in 2002, my urine was not cultured at the GP, the doctor gave me amoxycillin after dip stick test. I came to you and you then had me do a urine culture, which turned out positive for e.coli which is resistant to amoxycillin. So I have been given the wrong antibiotic the first time around and so this time I was given Bactrim, with no anti-fungal though. I took Bactrim which made me feel better and I would try to work but would have to quit since my bacteria would grow back and did another urine culture which came out positive again. My cultures came back positive within few weeks and you told me I could be having recurrent infections and to see a urologist but Dr. **** dismissed that theory and had one of her own.

When I saw Dr. **** this year, she took cultures and asked if I have been on long term antibiotics and I told her no. She took urine cultures and two of them came back positive and I was responding to antibiotics treatment. I was actually getting better, I was more than thrilled. I was then reading articles about tests being inaccurate. She was convinced that I have recurrent infections and would have to be on antibiotics for a long time, however she does not know the right way around it. An IC patient would not have infections. And I have never been infection free for a long time.


While researcing on better testing, I came across Dr. Paul Fugazzotto a doctor whose been in the microbiologist field for fifty years and is currently retired but as passionate as ever. Dr. Paul does broth cultures, a medium which is sensitive and which helps to grow slow growing bacteria. He emphasizes on colony count. He is unhappy about labs are dismissing low colony count and saying a patient does not have an infection.Several of my test have came back negative but on there I see too low of a colony count, I had to get my medical reports from hospitals to check on this. A person with a strep thoart would not need a colony count, one count would be considered an infection and when bacteria as such is found in the bladder, it should be looked at as an infection especially in chronic infection patients. Better testing should be done for those who have had repeated infections. Cultures should be allowed to grow longer and cathered to avoid doubts of contaminations. Many patients all over the world, send specimen over to United Medical Lab where cultures are done according to Dr. Paul's method. Some patients who have been told time and time again they have no infection, have found infection with Dr. Paul's method and started treatment and either get better or have been cured.

United Medical Lab found Klebsiella Pneumoniae and Group B Strep in my urine, the normal dose of antibiotics no longer help me which clearly shows in my cultures. I have to be on long term antibiotics and I know about resistance. But every treatment has it's own side effect. I'm seeking treatment since I know what I have and what I have to do. I have attached all three cultures at the end of the document.

I'm currently in contact with a Nurse Practitoner from US, who is willing to treat me after recieving my broth culture from United Medical Lab. Her name is Ruth, she is a advocate, researcher, and former IC patient. She treats with antibiotics, supplements and helps rebuild the bladder wall. Her story is thirteen pages long but very informative on her path to recovery.

I had a phone consultation with Ruth and she has asked me to take Cefaclor for a month to clear up my Klebsiella. I would then have to send another culture to United Medical Lab in three weeks or so to check on the progress of my treatment. In the meantime, I would have to take some supplements and vitamins which she and a doctor created for IC patients with sensitive bladder. Ruth letter and explaination on treatment is attached as well.

Information of the product can be found at ***** her story clearly states the need for supplements and their effect of repairing the bladder wall. I have researched so much into her story and her supplements and I find them neccessary and worthy. I do have her license information if you are in doubt from the Goverment of the District of Columbia. Right now, I need prescription for Cefaclor and to go according to Ruth's treatment. It would be alot cheaper for me to get this drug in Singapore and alot faster. I would have better monitoring while on antibiotics if I get it locally. If you reject to this I would have to buy this antibiotic online.

By the way, Dr. **** was a disaster, she makes me sick to think doctors like her exist. I did not go back to see her, however I did get another doctor from Urogynaecology in KK Women's to see, but I saw later that though she was slighty better she would not listen to my needs, as a patient I've got my rights to my treatment as well. So since I have been through this for four years, I don't want to have to spend another few months even years seeing one doctor again who isn't going to help me but paid. But I did go back to Dr. **** to get a copy of my bladder picture, which I really wanted to see and get a copy of the diagnosis which she made. The experience was horrible because she couldn't have made me feel any lower even if she tried. She discouraged me about my interest to learn about my illness. She laughed at me along with a couple of nurses in the room when I told her about my approach to getting urine cultures. My mom was there with me and was witness to this. It was so unprofessional of doctor to act how she did. This urine culture had nothing to do with her since she was no longer my doctor, all I wanted from her was my bladder picture and diagnosis of biopsy, period.


I never knew learning about what I have and understanding it is wrong. It's awareness and a patient has rights to know and do what helps us feel better. There are brochures about illness just about everywhere to help understand and deal with what you have and I know I was doing the right thing. When I was found out I have IC, I was terrified because I did not anything about it. I went online and I found a really great website run by an IC Spokeswoman in the US, who holds a Bachelor's Degree in three fields, one of them being Pharmacology.The address would be www.ic-network.com. She also works with top scientist and top doctors and attends IC Conference by American Urological Association (AUA). She is really up to date on treatment, since suffering from IC at 13 years old. She puts together IC Conferences, three of which I have attended. This is the website www.ic-network.com, very useful information for both doctors and patients.

I saw treatments especially Elmiron instillations and asked Dr. **** when I was her patient, which she didn't approve since she wasn't comfortable. Elmiron hardly gets absorbed by bladder, that is the reason for long treatment time. Dr.Theodharris explains Elmiron and why getting the treatment directly into the bladder would make a huge difference. He is a researcher of IC and is featured in IC network website. I was hesistant to ask Dr.**** but I did anyways and got a bad response. That's when I saw I don't have say in my treatment but continued to take Elmiron orally on and off for six weeks (which should not have been the way) but with financial difficulty and Dr. **** refusing to give treatment till she saw me, there was so much of a delay. I was actually struggling with a UTI which caused kidney pain and retention along with urgency and frequency, that is the reason I could not bring myself down to the hospital. If a doctor is not going to listen to my needs then I am going nowhere with treatment, especially when wrongly diagnosed so there is no point in seeing the same doctor. It would be wise to change doctors. I have to do what is good for myself. Though it would mean I have to go in rounds till I get the right diagnosis and treament.

I did bring up the issue about DMSO being used at 50% with Dr. ****, but she did not want to believe that it could cause muscle damage. I showed her the article from AUA, but she went on to explain how DMSO works, which I'm well aware of. AUA did tests and it showed muscle damage when used at a percentage higher than 25%. The suggested dosage was 25% or used as a part of cocktail. Some practices don't use DMSO treatment at all because it's invasive and side effects. Though this treatment is not for me, I do not want other IC patients to suffer like I did or even worse.

[continued...]

[Vampireness]

I am also having alots of trouble in my home. My mother is not supportive, she criticizes me about my illness and makes me feel worthless and she always talks about money when I mention I need help and would have to see a doctor or buy vitamins. She has directly told me I am worthless and I have a sibiling who insults me even more since she has seen my mom do it to me. According to them I have no life and I can't take living in this house being ill. I can't live my life because of this illness taking over everything. I can't buy my own food and I am dependant on my mom to get me food and items. I can't ride a cab too long nor wear the seat belt because of the pain, which means I hardly ever travel by bus. I'm homebound and hardly able to go anywhere.There are times when I can't function around the house but I have to push myself or I will hear ill words about me, it really hurts both physically and emotionally. I am just looking for that one person who will help me since I respond to antibiotics. I just can't find the right person to prescribe me. I'm at the mercy of a doctor and a prescription. I would like to go back to school and I would like to work and have a life. I have never lived a normal teenagers life for 4 years, I'm turning 21 soon and I have missed out on alot and I just really want my life back. I just want an IC free birthday, one which does not take place at home. Please help me?


Yours Sincerly,
************

[End]

I couldn't believe I wrote three pages LOL....so I got this printed out and got one sent to Dr.Yong and waiting for response. I have got to photocopy my previous hospital results and send it along with my letter and Ruth's letter and her license to Dr.Serene.

[Katrina]

Lots of people are having difficulty with not getting all the emails of updates from prescribed threads....including me :grouphug: Has me far behind at times.

Shelly, :grouphug: http://www.ic-network.com/forum/showpost.php?p=228720&postcount=12 probiotic shopping
I take the VSL #3. My herb garden is succeeding in some things and failing in others. Mostly just stressed these days.

So Shelly, are you asking for info on how to do a self instill while at the doctor? Dixiefireball has probably done more than anyone else (quite a few a day) so she may have a lot of good advise. How long do you normally hold the medicine in? Anyway, I think just laying it all out on the table with the doc is the best way to go.

Vamp, so happy Ruth got back to you. Wow what a long letter :grouphug: You don't joke when you say long lol. Good luck with it all!!
:grouphug:

[Romans8:28]

Vampireness:
You definately did a good job expressing your feelings and what you would like to see done. Hopefully it will result in your getting some help!

Katrina:
Thanks for the info! Sorry your under a lot of stress right now..., that doesn't help at all! a:grouphug:
The weather here as many places has been over 100 and is so hard to even be outside. I'm sure it will effect many gardens!

I know how to do an instill (Dixie help me in the beginning), but I wasn't sure how to ask this doctor, I think your right though I think I will just take a treatment along and ask in person!
I hold them about 2 hours or so.
Shelly

[Dixiefireball]

Roman,
I would just take my installment alone to the Dr's office. I call the office a day or two before hand to let them know what you where going to do, and ask to have the Dr. to o-kay this. (that way if an RN has something to say about you using the installment she can see it was o-kayed by the Dr. and will have to let you have the time to use it if she agrees or disagrees with it.)

After you give them a urine sample. (i would take the installment already mixed to save more time) install the treatment then go on with your appt.

I do wish you the best and hope this will help you get more answers.

sending you hugs and prayers
Rhonda

[Vampireness]

Katrina - Yeah I don't kid, I never kid I'm always serious lol
I hope you are feeling better or getting unstressed these days.....

Roman - I tried...but I remember editing the piece abit before printing it, I guess not all. I forgot some parts but blah whatever I can't be bothered to edit it LOL and waste my precious ink and paper lol

So......I haven't heard from Dr.Yong yet and I'm going to mail out letter to Dr.Serene after I get my results photocopied she should recieve it either tommorrow or the next day.

I will then call Dr.Yong and ask if she has recieved the email. Sometimes delete it thinking it's junk.

We'll see....

I really havent been getting much sleep, stupid pain and urge! I go too many times, the Bactrim and Garlic and all helps for a couple of hours but since it's such a low dose....I just take the pain and whatever discomfort.

[hollipop]

Vampireness - I'm sitting here crying for you, sweetie. I know your story, but it's so difficult for me to read about it and not feel for you. I just wish I could take you away from all the terrible doctors and nonunderstanding family. Sometimes I think my family does not really believe my pain, and that just makes it all worse. I'm very depressed today, so I'm more sensitive, but I'm determined to get off these drugs that are controlling my life. I know I can get through it, but I'm so low today...and very tired. I was up the entire night. Anyway, we will get through this together. :pray: At least you know you have a friend here. {{{{hugs********

[Romans8:28]

Thanks Rhonda I think that is good advice. Actually I am going go to both doctors today and pick up the medical history forms in advance. It always takes me so long to fill them out...., I may talk to the nurse at that point,
I'm not able to do my instills standing up, wish I could so may have to wait till the table anyway...,

Vampireness:
I sure hope you hear something back soon! I know when your in so much pain and feel everyone is ignoring you, that is the most lonely place to be!
Hang in there!

Holly: I'm sorry you are depressed. I thought you were feeling so much better? Are you having a lot of pain today?
Hope you feel better soon a:grouphug:

Shelly

[hollipop]

Thanks, Shelley. Physically, I feel on top of the world, but I was having such a hard time weaning from the elavil that I just stopped it cold turkey and decided to get the torture over with...so now I'm not sleeping (at all!) and I'm crying a lot for no reason. I know I will be better in a few days, but it doesn't help when my DH is coming home from his new job that he hates and making things more stressful for me lately. I just don't need any negativity around me until I get this drug out of my system. I feel terrible for complaining, but it's just so real right now. And my refrigerator is being worked on today so I can't go to "therapy", which is my daily yoga and sauna. Ugh! I have so much to be thankful for, but my sleep-deprived head won't let me enjoy my parade. :loco:

[Dixiefireball]

Vamp,
sorry hon I didn't mean to be rude by not replying to you last night please forgive me for that.
I was gave the link and told that Roman could use some advice with her Dr. and treatments.

I want to wish you the best of luck hon. I'm so very sorry for what your family is putting you threw. Its so sad when people could understand more about this disease by just doing a little research or a little more reseach which ever the case may be to help someone in their family.
I know you are still searching for answers for yourself, and hon i don't know if this will help you are not, but maybe have your Dr. to explain it to your mother? If your mother is anything like my father you just have to keep going and try to look over her. The first chance i got when I was young I got a Job and got the heck out of this house. My mother had passed away my father remarried a witch. (not all step mothers are this way, but this woman was!)
I was working a part time job, going to school, and drawing a small check off my mother. I know with health issue this can make things more hard to do. (i done this all at the age sixteen.) i wouldn't advice anyone to do this its hard on your own at such a young age. take that from someone who knows!
I even rented me an old run down trailor to get away from the mental abuse that was going on in the house.
ONLY if someone would had pointed me to some help maybe things could had went differently for me. I didn't know their was help out here ofter from goverment sources maybe if you can get into a mental health place to talk to one of these people here. (the service should be free of charge.) they go by income.
and shouldn't need a parent to sign anything if your asking for the help!
check into this.
you really seem like you need someone to talk too. They may be able to help you and your mother sister or brothers all come to an understanding where you all can live a more stress free live style. this would make things a lot easier on you. Your mom may just need help understanding and these people at mental health (maybe even a pastor) will help her understand.
I wish you the best hon.
sending you hugs and prayers
Rhonda

[Romans8:28]

Rhonda sorry you too have gone through so much a:grouphug:
& Vampirenss it is so hard when other don't understand. I find the pain of IC sooo, isolating at times.
Have a friend I listen to often that is going through a divorce. I know she feels I talk medical too much, but just have had to learn so much.., she told me recently she has medical problems too.., high blood pressure that is completely controlled by medication..., I got the point and will not go to her to vent! :bonk:

Holly: I will be praying for you a:grouphug: I have heard not to go off Elavil cold turkey. If your having a hard time maybe it would be better to cut it in 1/2 for a few days. I am thinking about trying to go off as well since the Elavill itself seems to give me achy joints and restlessness. Tried doing it during the day then was sleepy..., :toilet:

I think I just have stone because my bladder and kidneys have been better then wham, I'm doubled over, then it goes away. But a stone should pass!!:)

Stopped by the new GYN's office and picked up my medical papers to fill out.
I ask them about the instill. The one was very sweet, the other, I can tell I will try to avoid! Neither had ever heard of IC but the one listened with compassion while the other made a face. The sweet one thought it was a great idea and ask the nurse. I was told he would not do a pelvic on the consultation.:woohoo:
They also will not do a urine test unless I think I have an infection. Since I have my own test strips and am on antibiotics, I could go in with an instill If I choose!
And if I have to come back we will have time to talk about it. May pack instill equipment in the car just in case but I am relieved!

Shelly

[hollipop]

Hey, I'm actually doing better today. I slept from 9pm to 6:30am, with the exception of when I had to rock my daughter back to sleep around 1am. I slept well and didn't have any intense dreams like I've had this week. I'm hoping I'm over the withdrawal mostly. I can do this. So far I'm not cying either. :lmao: I'm going to try to make it through the weekend, and if I'm still having problems, I'll see if I can get a 10mg dose or something. Thanks for the well wishes.

Vamp - I see an email from you, so I'm going to read it now...ttys! :hi:

[Vampireness]

Holli - I am really sorry about the elavil....since it's an anti-depressent, maybe that's why your getting those side effects. Are you back on it? You have stopped Elmiron too? I know how attempted you are to stop just like that, I would be too. But hey, don't wanna harm the body again do we? Thank you for being so understanding *smiles*
What is DH btw?

Romans - Glad your instills turned out the way you wanted. Have you got them yet? How was it? What do you need it for again? (Too much pain?)
What made you think I'm feeling ignored?

Dixie - I'm not really sure why your apologising, I kinda do know but I don't see everyone responding to me but talking amongst themselves so not sure why YOU have to apologise. Thanks for the luck though....

My mom has been to almost all of my Dr.appts and hears the doctor talk to me. There is only one I asked her not to enter with me, if there is an outcome, being with me in the doctors office makes her worse and more inconsiderate. Once the doctor says I'm doing all weird stuff and researching this and that (they are really negative and mostly discourage) she will hold on what they said and use that against me. "The doctor didn't say anything about diet" "How do you know about it?" in a really sacarstic tone. (IC diet and she knows I got it from ICN)

I do look over her, unless I need her to do something for me and give me money. I was outta the house when I was 15 or so, but that was because I was studying in another country though she was the one providing the cost of living, but I was happy.

Well lucky you for having trailers, we don't have those here. It's either house or street.
Ok I have checked into so many stuff over these years ever since I was like 8 or 9, meaning way before I'm ill, I tried to leave my home but it just won't work. Welfares ask you to you live with relatives (they wouldn't take me in at that time) I was physically abused at that time so I know what I'm talking about when I say I have looked. I still did look when I'm older but now I would have to rent a house or room and I have spoken to my minister of parliment but with the IC I couldn't meet him in person just talked to him through email and he directed me to Development Council but if I were to move out, I would need to have someone buy me food so it doesnt really work out all this IF they approve. I've also got four cats which I'm never giving up, its harder to move to a place when you have animals.

I've pass that stage where I need someone to talk to, I know what I got to do to make myself feel better. And thats what I'm concerned about and trying to do and when I'm feeling good I am happy. The illness is the only thing that stands in my way. Needing someone else to talk to is unneccessary, though if that someone is a Dr and prescribes me medication, that would be great lol.

Wish life was such a fairy tale....They may be able to help you and your mother sister or brothers all come to an understanding where you all can live a more stress free live style. this would make things a lot easier on you.

She is not going to listen to me but she is going to listen to someone else whose not a Dr.? She is also very fixated on the negativity she hears like from a Dr. I'm not christian or catholic btw (in response to the pastor) I don't talk to my sibiling and when I did, all she did (though she understands very well what I'm going through because she has told me she feels really bad for me and for some reason wakes up quite a few times from her sleep to pee) was criticizes and whatnot because she wants what she wants and if I stand in the way or if she feels threatened, she will hurt anyone along the way. All these problems started a long time ago, you gotta see that, ever since I was in middle school it's not something recent but just worse since I'm ill. In summary, I don't have to attend sessions here and there with a person and with my mom or sibiling or "family" to make them understand what I'm going through, firstly because of what I mentioned it's been a problem for several years before my illness and secondly cuz I don't care, I got better things to think of and do and like I said I'm doing what I can to make myself better along with help that I'm getting (which I'm very grateful for) and I plan on moving on with my life than having to make people understand. (I get well and zooom I'm outta here lol get the picture?) I was just hoping the letter is a guide somehow to those seeking help would put their story on paper instead of saying it in person (because some doctors just dont have the time to listen to you and words dont come out right in person) just a different approach in seeing a doctor etc.

[Romans8:28]

Holly glad your are feeling better. Hope you are through the withdrawls and on the road to recovery! I skipped the Elavil yesterday so far no real issues!
I almost felt like the Elavil itself was having the opposite effect on me. I felt more down etc...., strange! But then I heard from my son in Germany yesterday so feel A LOT better!

Vampireness, I was simply including you in my conversation. I often feel like I am in so much pain and no one can see it. My GP says I hide it too well but when your in pain all the time what can you do? Most people don't want to hear! I'm sorry you have such difficulties with your family. I can't imagine going through all you have alone. Even when no one else is there and I am hurting I have a best friend I can turn to!

I do instills for the bladder pain every 4-5 days. I'e done them at least once a week for almost 2 years. They help A LOt and I can tell when I need one. If I need it I often do one without the steriod in between! I was only trying to see if i could use an instill before a Pelvic with this new Dr. Since he won't do one the first visit I can talk to him then! My instills are all preservative free and contain lidocaine, sensorcaine, sodium bicarb, solu cortef and gentamicin. Every doctor has their own "brew" as my doctor calls it but this it what seems to work for me!

Shelly

[Vampireness]

My mom sent the letter to Dr.Serene earlier today or maybe yesterday, since I've been lacking sleep I can't remember too much and which day is when. Anywayz, since it's the weekend, I should hear something either tommorrow or tuesday over here, atleast I hope I do.

I will call Dr.Yong though because I emailed her awhile back....

I still got to make my way down to see Dr.Phoon since his not that type who reads letters and all. Explaining to him about one thing makes him overthink and keep me in the consultation room, looking at me for hours with no answer and then says no and I can't do anything. It's hilarious!!!!

[Dixiefireball]

Vamp,
I just felt bad after I got accrue to me that I didn't respond to you. Its not my nature to do that and I felt bad about it.

Rhonda

[Vampireness]

Vamp,
I just felt bad after I got accrue to me that I didn't respond to you. Its not my nature to do that and I felt bad about it.

Rhonda

Ah ok, np.

[Katrina]

Sorry I missed so much, been computer less and very stressed and distracted.

Vamp, lol you not kid....lol

Sorry I missed so much but I think I am back. hugs to all!

[Vampireness]

Hey Katrina nice to have you back lol
I'm not kid? I am well sorta lol but I never kid, get it? lol
Your too easy lol

Roman - How is everything going? And yes it's sometimes easy to hide pain when you get "used to it".

Update

Ok so Dr.Serene wants to see me tommorrow at 10a.m - 11a.m. I wonder what she is going to tell me, because I know some doctors hardly have the time to talk on the phone and so will ask the patient to go over and advise not to do this and that and ask you to go back home without medication. It's like the whole meeting was just to explain why she can't or won't prescribe. I hope it doesn't turn out that way. I asked the nurse if I can speak to her but she said the Dr. is occupied with patient and just to come over tommorrow.

I guess I'll see what happens, while waiting for Dr.Yong's reply.

[PlainJane]

Hi vampireness,

I hope you have a good app't with that doctor tomorrow. I talked to Ruth today and she gave me some ideas about vitamins to take. She asked me to send my blood to spectracell lab and they found I am in deficient in vitamin b12, selenium, calcium and vitamin e.


Erica

[Vampireness]

Plain - Thank you so do I. Ohhh I see....thats a good test, I should probably have one done, I'm sure I'm in deficient for many vitamins lol
How much did the test cost?

Which vitamins did she recommend?

[hollipop]

Vamp! I'm praying your appt goes well for you. Please post as soon as you can! I'm checking the time zones now to see when you will have the appt. :pray: :pray: :pray: :pray: :pray:

[Vampireness]

So nice of you hollipop *hugz* thank you *smiles widely*

I'm not too sure about time zones but I know that I'm a day forward and 12hours apart Washington D.C time and Canada.

Right now it's 8.17p.m Tuesday and it's Monday 8.17a.m in those places.
What time zone is that for U.S?

My appt is Wednesday 10a.m - 11a.m which would be Tuesday 10p.m - 11p.m in those places.

[hollipop]

You are 13 hours ahead of me. So when you are at your appt at 10am, I'll be here in Texas at 9pm. Since I usually go to bed at that time, I won't get to find out what happened until the next morning...unless I wake up in the middle of the night. Ugh...

[Romans8:28]

Good luck on your appointment Vampireness. hopefully the doctor can read your need for help through that letter and will have some helpful things to do! a:grouphug: or at the very least a litte compassion! keep us posted. Don't get the e-mails so have to check back in here regularly!

So far no info. the my uro came down sick so has not been able to check on my test etc....,

Erica, I too would like more info on that blood test. Sorry to read you are not doing better:(! a:grouphug:

Shelly

[PlainJane]

Hi,

I can't remember the exact price. I did the most comprehensive panel called the FIA comprehensive 5000.

The coolest thing about this test in my opinion is that it shows your vitamin mineral levels over the past 6-9 months I believe it is. That is very helpful I think.

I saw my homeopath today who knows all about this SpectraCell test and was glad I had it done. I am feeling more hopeful after having spoken to Ruth yesterday and my homeopath today. My homeopath even referred me to a naturopath who knows about Lyme stuff. I had a very good appointment .

(Edited to remove advertising site)


Anyway, I think the SpectraCell is great - very helpful.

Erica

[Romans8:28]

Thanks Erica!
I am so glad you are encouraged:) Hope your feeling better soon!

Holly, I went off the Elavil without a problem, actually I feel better and think it was causing me to feel down:confused: How are you doing?

Katrina a:grouphug: feel free to pm me anytime you need to talk! I'll be praying for you!

Vampireness please let us know how your visit went, you've been in my thoughts today!

Shelly

[Vampireness]

Yessssssss Yessssssssssss Yesssss!!!
Dr. Serene agreed and has prescribed me Cefaclor for a month, she suggested that I take the original because Ruth didnt specify if generic is ok but my doctor said to do the original. So that's Distaclor.

Unfornatuely, the drug is not available in most hospitals that I checked, so my doctor has to order it in. I've sent Ruth an email about the original and generic and also told her about Nystatin. My doctor did not want to prescribe me Nystatin because she said unless I have thrust or am sexually active I wouldn't need it because that are older people who take antibiotics for several months without problems. She was also concerned about the liver function related to Nystatin. So I just want Ruth to either write my doctor a letter telling her the need for it or just to let me know what to do....

Meanwhile I will continue taking garlic.

My doctor did tell me I could wear pampers LOL which was hilarious because I don't leak and I just really have to go all the time, it's not like I am scared I'm going to leak, I just can't concentrate on anything when I really have to go and feeling the constant urge at times.

She also asked me to drink cranberry juice, and asked if I have tried that to help prevent infection. I said it's not good and that it's acidic. And she said oh ok.

But was funny though.

Romans - Thank you for being concern :-)

PlainJane - Thank you for the website addy, I emailed them asking the cost of the tests. It's pretty interesting that it can show 6-9 months result.

[Katrina]

Thank you Shelly!!

Vamp, glad you are on top of things with the stresses with doctors:grouphug:
Good luck with things and thanks for keeping us updated!!!!

[hollipop]

V - that is AWESOME! I don't really think Nystatin is necessary. I was on antibiotics for a long time and only took probiotics. I should probably do the garlic too. Sorry for the delay in my posting. It's flooding here and I've been without electricity a lot. I just went to the gym and watched a bunch of idiots in sports cars flood out their cars. Too funny. This one guy was impatient with me on the way home and kept driving on my rear, but I KNEW about the areas that were flooded and knew to slow down. Well, when we hit the high water, he was so close to me that my "wake" flooded him out. I just drove off dry as can be. People can be so stupid driving in this weather. Thank god I have a jeep!

Shelly - thanks for asking. I'm actually fine now. Last night I didn't even take a Tylenol pm and slept well with no more nightmares. I guess it just takes about a week to get out of the body. I'm sooooooooooo glad I suffered through the week, instead of stretching out the torture by weaning. I feel like a million bucks today!

Today is my last day of cipro, and I'm starting the amoxicillan tomorrow. I'm a little scared, because I'm allergic, but I'll take benedryl if I have to. I get hives from it. No pain, no gain....I'm going for it! Looks like another 3-4 months and I can see if I'm cured. Gosh, I hope so....I'm enjoying my food way too much to stop eating like this now. I'm addicted to soy sauce!!! :evilsmile

[Romans8:28]

Vampireness:
:woohoo:

Katrina a:grouphug:

Holly:I am so glad your feeling better. I seem to be sleeping better off the Elavil too, but have noticed my frequency etc. increasing some...,:(
Please be careful especially taking something you are allergic too...,:confused: that concerns me. Is that the only one that works for your infection?

Also I know the food thing is good but BE CAREFUL, I know too many that relapse worse then before and it's not worth it! It's hard to remember how bad it hurts till it comes rolling back on you! If you have to eat something like that please use lots of water and some prelief..., and maybe keep it infrequent! I love Chinese food too but don't dare touch it! Not trying to nag you just care! a:grouphug:

Shelly

[Romans8:28]

Update:

FINALLY got my reports back but only because I called and about begged the microbiologist, they've been done for a while..., He did just send them to the doctor yesterday...,:bonk:
My plate, my broth and his Thio broth did not grow the pseudomonas this time but both did acinetobacter. This is an enviromental organisms that often colonizes humans and may cause a variety of opportunistic infections.
It is not considered a contaminate, especially since it was grown on two separate cultures, with the specimens taken at two different locations and both mid stream clean cath. it is suseptible to the Bactrim I am on again so not sure what our next step will be. This doesn't give us the Proof I wanted for a biofilm but definately points to bacterial issues being involved etc.


e-mailed my doctor and hope I hear back from him before I go to the internal medicine doctor next week!
Shelly

[Vampireness]

Holly, Romans, Katrina - Thank you.

Well the medication is here and my mom is going to get it. It costs US$130 for 100 tablets. That's alot and costly.

I am going to ask my doctor if I can have two weeks worth first, so that I can see how I react to it, since I don't tolerate antibiotics that are too strong. So I'll see if my doctor agrees because if I take the whole box and two weeks later I realise I am not able to take the rest the whole amount worth will be wasted and the medication will be there doing nothing......

I'll have to call tonight to speak to Dr.Serene.

Update on symptoms before I start full dose antibiotics:
100ml to 200ml capacity
Burning when peeing
Strong urge before and while sleeping that makes me wake up and stay up.
Frequency getting up 6 times a night or so.
Pain especially in the morning and have to take a garlic to reduce the pain.
Antibiotic taken at nightime.
Unable to empty bladder (Retention)

[Vampireness]

Looks like I would have to buy the whole box so I will have it tommorrow. Well hopefully I tolerate it.

[Katrina]

Good luck Vamp and Shelly!

Thanks for the hug Shelly. If I am missing anything please forgive me....not myself completely these days. :grouphug:

[PlainJane]

Good luck vampireness. I can relate. My bladder is still not getting better. Last night I woke up every single hour to pee. So sick of this:cussing:

Erica

[Vampireness]

Plain - I'm really sorry. Do you plan to do something about it?

Katrina - Thank you. (And when ARE you ever "yourself", if there is such a thing) :angel: :smile tee

Romans - So what do you plan to do about treatment since Bactrim is supposed to be helping with that bacteria? Good luck with hearing from your doctor.

Update
Ok so I got my antibiotics and am going to start them in a two hours or so, and since they are 8 hourly I wanna start in the afternoon and night and the last in the middle of the night or morning (4a.m) lol.

I also contacted Ruth and she wrote a letter for my doctor for Nystatin and the reason being it helps with overgrowth in the gut when on long term antibiotics. I will have to get the letter to her on the weekday and to collect the medication because she was willing to prescribe it when I told her what Ruth said in the email. She needed to know the units and because we only have oral suspension.

Holly - So I guess each individual is different and some are more prone and others are not so much, I don't really think I am but a month on antibiotics and followed by several more months, I prefer to have Nystatin to help along with Garlic and probiotics too.

But anywayz here goes treatment lol.

[Romans8:28]

Vampireness:
good luck with the antibiotics. I also had to kinda beg for a nystatin script but it must have preservatives since it sent me in a flare.

Erica, I'm sorry your hurting a:grouphug: I will tell both of you, I am up so much at night without my instills but using them I sometimes sleep all night or am only up once. I still have bladder pain, but the difference off or even waiting on the instills is amazing. If you don't get relief please consider these!
Again we added the gentamicin to mine to prevent and help treat infections.
pm any time you need more info.


I really don't know what I am going to do. Haven't heard from my doctor.., I was out late getting copies of all my test and previous records to go to the new ones this week!.. trying to prepare my defense a:wink:
(Everybody was helpful but one DR a:headbang: he charged me $17.85 for 2 pages of my sonagram report and exam he did a few years ago...,is that legal? Know they can charge but that much? I didn't like him then either:rant: !!

Anyway while I was out I noticed my doctor was working late, so I am sure he is calling the pharmacist etc. before making any decisions...
My lab sheets were very interesting and explained a lot.
my urine specimen from the doctors office, sterile clean cath, mid stream grew lactobacillus on the initial plate. (regular blood agar)

both broths grew this and the acinetobacter bacteria. I am at least encouraged that the data is consistant and makes me feel more confident in my work as well. Lactobacillus is always written off as a vaginal contaminate. One micro biologist on the board swears this can also cause.., URINARY TRACT INFECTIONS...,since both/all test mid stream clean cath, showed this I find it very interesting.., I'll probablly call him ..:smile tee

Now to go organize my pile of records..., :toilet:
Does any one feel like they could have a panic attack at the thought of going to a new doctor??? I really struggle with it!

Shelly

[Katrina]

(((((((((((Shelly))))))))

Sorry Erica...:grouphug:

[Romans8:28]

This is unbelieveable:

Though I don't really know the significance since this did not grow in either broth and is not considered a pathogen.. (it can how ever live in a biofilm along with other bacteria...,)

I just looked up the bacteria that I grew in the older urine sample.., it was tested as delftia acidovorans. At first I thought it was pseudomonas becuase it was shiny... (this plate also grew lactobacillus). I later felt really dumb but Read this:

Delftia acidovorans Topic Tree


Definition:
A species of gram-negative rod-shaped bacteria found ubiquitously and formerly called Comamonas acidovorans and Pseudomonas acidivorans. It is the type species of the genus DELFTIA.

Synonyms and Source Vocabularies:
Delftia acidovorans
Comamonas acidovorans
Pseudomonas acidovorans
Comamonas acidivorans
Pseudomonas desmolytica
Pseudomonas indoloxidans
Pseudomonas acidovorans den Dooren de Jong 1926 (Approved Lists 1980)
Comamonas acidovorans (den Dooren de Jong 1926) Tamaoka et al. 1987 emend. Willems et al. 1991
Delftia acidovorans (den Dooren de Jong 1926) Wen et al. 1999



Comamonadaceae

Leptothrix
Sphaerotilus
Comamonas
Delftia

this is soo amazing....,
Shelly

[hollipop]

Shelly, you are amazing at research! You go girl!

V - good luck!

Erica - I will say a prayer for you. I can't imagine what you are going through...I was able to at least get some sleep with the elavil and darvocet, so I guess I was pretty "lucky" if there is such a thing here.... {{{hugs******

Hi Katrina!

Okay, here is my update. I'm still too scared to try tea/coffee/fruit, but I've been enjoying eating out again. I feel like I'm normal again...no freq/urg/pain at all. I'm doing well on the amoxicillin and have had no reactions to it. I was going to take benedryl with it, but haven't had to so far. Hopefully I'm over my allergy to it now. I've outgrown many of my childhood allergies. I'm not holding my breath, though...I do have an allergy to mold spores, so I figure I will have "some" reaction to it over the course of a few months.

[Romans8:28]

Dear Holly, I am just so glad you are doing soo much better!!!

Shelly

[PlainJane]

Hey Shelly,

I think it is good that you take the time to post what you are learning. I appreciate it. I have to admit though, I have no science background so half the stuff I am learning about Lyme disease just doesn't make any sense to me. It is very frustrating.

Erica

[Romans8:28]

Erica,

Talking about these things helps us to learn..,and maybe somehow some way in learning, even if we struggle along the way, maybe we will find some solutions.

Shelly

[Katrina]

Shelly, I appreciate a lot your postings...it is true many times I don't understand it all but I trust that I can turn to you with my questions if I want to know. Thanks.

[Vampireness]

Update

Ugh, I've been peeing so much at night, it's frustrating....everytime I wake up cuz of a noise or something. I've got to pee.

So about 7 times a night or so, I guess just waiting for the antibiotics to start working (they gotta at one point....lol)

I have not got Nystatin, pretty scared to try actually.....it's not something I've tried and I'm already taking garlic...and antis...so I dunno....Probably will wait two weeks or so and see how I do, I should be somewhat better by then to take Nystatin..

Man the vitamins Ruth suggested were gonna cost me almost S$180+ (US$113+) a month.......Crazy!

Although I asked Ruth about Zinc that she asked me to take at 25mg. I can't find it at that dose, so the only thing available was 50mg so I asked her, "would it be fine to take a day and stop the next and to continue with it on the third?" She said it sounds like a good plan and to try it so I'm gonna try it lol.

[ICNDonna]

It's important to remember that when a thread is started, any member of the IC Network may reply. You may not always agree with responses, but you need to be willing to accept that.

I have deleted several posts from this thread and will now close it.

Donna