mycoplasma can be treated but a lot of docs don't know much about it

[PlainJane]

This is a quote from GLENDA: I believe you're on the right track, keep researching. Antibiotics won't work on this type of bacteria unless they are taken in extrordinarily high doses, and for a long time.

I was diagnosed with Ureaplasma Urealyticum and I took 3 months of Ofloxacin and 1 month of Doxycycline and Azithromycin. My ureaplasma is now gone. I was tested for it a few weeks ago by Dr.Toth.

I wouldn't exactly say that one always needs to be on really high doses for a long time. Personally mine went away after four months of treatment(though I suppose some people would consider 4 months a long time. I would consider a long time to be a year or more.)

On Dr.Mirkin's site he says that you might have to be on the antibiotics for a year or more, sometimes a few years. That really freaked me out and I was not willing to do that, especially not knowing for sure whether it was causing my symptoms. I just want to let you know that it can be treated and it doesn't always take years.

Having said all that I want to tell you in my experience the greatest obstacle to getting proper treatment were my doctors. I saw three urologists and NONE of them tested me for my mycoplasma. Finally I was tested for it by my chronic fatigue doctor. Even after being diagnosed with it I really had to convince my doctors to prescribe the proper antibiotics! I had to go to them with research. I felt more like a lawyer in a court trying to win my case. It bothers me greatly that the system is set up like this. The "lowly" patient and the "almighty" doctor (judge). Granted not all docs are like this (I've seen two good docs: a chronic fatigue doc and doc Toth).

Anyway, one of the urologists just looked at me and flat out told me he had NO CLUE how to treat ureaplasma. I don't understand how this is possible. That's like a cab driver sitting at the steering wheel with the passenger in the back, the key in the ignition saying "Yeah sorry I don't know how to drive a car". I mean hellllloooooooo it's your job!!

I handed the urologist information from Dr.Gabe Mirkin's site about how to treat ureaplasma and he promptly stuck the info. in my chart and told me he would refer me to a colleague who would know more about this than he did. Well after a month's wait time I see his colleague and she tells me there's nothing she can do for me. This type of back and forth nonsense went on for almost 2 years.

My story is unfortunately all too common. I think part of the problem is that a lot of the docs don't know much about IC and not having much to work with they often don't know how to help the patient (in my experience). I've found that often when doctors don't know how to help the patient they either dismiss her ("It's all in your head" "Hypocondriac") or attack/accuse (I actually had a doctor imply that I was faking incontinence because he couldn't demonstrate it on his urodynamics test) or destroy all your hope (I had a doctor say to me that I had a chronic pain condition. Then later in the appointment he said there is no treatment for the pain condition. Then I said " are you saying I'm never going to get better?" His response was, "I have no idea where you got the notion that I said that.")

What they do is, in short, dump all of their bad feelings on the patient so they don't have to feel bad about the fact that they have no clue how to help. It really is just a coping mechanism used to protect the doctor's ego. It is very difficult (not to mention tiring) to be on the receiving end! I've been doing it for 2 years, some here on this site have been going through this experience MUCH longer.

As patients we want to believe that doctors are there to help us and we want to believe they have the answers. This whole process has been scary to me because it has revealed to me just how incompetent, egotistical and cruel some doctors can be.

I understand Glenda's motivation to share all this info about mycoplasma and antibiotic treatment. I also understand why Allibeth wanted to share her positive experience with Dr.Toth. When someone finds something that works the natural inclination is to share that success with everyone who is still suffering.

I really wish there was some way to discuss antibiotic treatment without it turning into an argument or without the moderator shutting down the thread because it could turn into an argument. I noticed four threads were closed down in the antibiotic forum within just the past two days. Is there any way we can share our experiences without arguing?

[massagedoula]

Erica,
From re-reading those threads, I would guess that they got closed down because the moderators percieved Glenda's tone as hostile or confrontational. Maybe if there was a discussion with a more peaceful tone (like yours) then it would be fine? However, I have noticed that sometimes threads get closed for no obvious reason. I just posted about my experiences with NAET. Then I did a search on NAET to see if anyone else had ever posted about it, and found a recent one that was closed down for no other reason that I could see other than the moderator did not believe in the therapy. So I don't really have an answer. I wish that we could all talk about our journeys with this diease openly without being silenced. But I also don't think that we should be openly hostile to other's views like Glenda seemed in those closed threads. There needs to be a balance.

[ICNDonna]

According to my research, mycoplasma is normally found in the urinary tract. That could very easily be the reason some doctors don't wish to treat it as a disease.

With one exception, my experiences with physicians have been excellent. I saw the same urologist from 1974 to the spring of 2005 when he retired. I now see one of his partners and he is equally caring. And my primary care physician has been seeing me since about 1973.

And threads are not closed on these boards for no reason. If you have questions about anything that takes place here, please send me an email.

Sending healing thoughts,
Donna

[Romans8:28]

Donna as I have shared research I have tried to open and caring knowing we are each very different. I in no way am saying this is the cause of ALL IC, as I've said I can not live a week without antibiotics because of severe pain from the infection in my kidneys but the antibiotics kill my bladder! I don't like the arguements, I just wish we could all work together!! Maybe like many of the heated debates of the medical past both sides are partly right!
I am reading a microbiology doctors lab book Diagnostic Bacteriology A study Guide by Margaret A. Bartelt. @ 2000, pgs.285-287 This is a doctors textbook/lab book and lists mycoplasmas. (I don't understand how we can say they are not a pathogen?)
"Mycoplasma hominis colonizes the urogenital tract of many sexually active adults. it is an opportunistic pathogen and HAS BEEN assoiciated with BV, PID, etc. and a variety of other infections.
M. gentitalium may cause gential tract infections.

Ureaplasma urealyticum colonizes the urogenital tract of many men and women. Th oraganism may cause nonchlamydial, nongonocccal urethriti inmen. IN women it IS associated with BV and upper gential tract infections."

Chlamydia is also know to cause nongonocccal urethritis and is a know cause of urehtrititis, PID etc. pgs.268-269

This book does not talk about biofilm infections but in researching the biofilm infection my doctor and I believe I am battling in my kidneys, the evidence for possible similiar symptoms is overwhelming.

I know there is a problem with many who think they have THE answer, and I am not claiming that at all, but would you please please check out the research I listed on this and just consider that these things could be the cause of SOME peoples symptoms. My doctor has had several diagnoised IC patients that after treatment with him are now consider chronic infection patients and well. Those of us who do not respond are his IC patients! We have discussed this reserach at length, I have a great doctor. He believes not that IC is bacterial but that many IC patients are actually misdaignosied chronic infection patients!
In Dr. Moldwins book pages 37-39, he discusses the possiblity of microorganisms causing IC. He discusses the problems with culturing etc. "research in this field is not easy." and he lists the problems.
He goes on to say. "due to the problems described above, no study has been performed that clearly demonstrates an infectious cause to IC. neverthless, interest in this possiblity persisits and research continues. In the mean time, many clinicians search carefully for low numbers of bacteria that may be present in the urine of IC patients and they provide therapy base upon those findings!"
Actually I learned about a possible bacterial cause in the ICN patient hadnbook.

Donna I love and respect you here and know your concerns about unnecassary antibiotics. That is your motherly instincts and I understand. I used to hate too them and told my doctor "HE WOULD NEVER PUT ME ON THEM LONG TERM". for me they know are part of what keeps me here for my children! I hope that I do not come across in anyway as disrespectful, here but I ask you please consider that done right, SOME patients could be saved a lifetime of being labeled with this awful disease, and really just have some kind of infection. I only wish that I could have been one of them! :grouphug:

[PlainJane]

According to my research, mycoplasma is normally found in the urinary tract. That could very easily be the reason some doctors don't wish to treat it as a disease.

Donna

Donna,

You are totally correct. My doctors said that ureaplasma usually doesn't cause symptoms. The key word in that sentence however is *usually*. I approached my doctors with the attitude of "I believe this is causing my symptoms you believe it may not be. let's just cure it and then see." I think this is a good approach to take.

In the end the ureaplasma wasn't causing my symptoms because I still have the symptoms and the ureaplasma is negative.

I really don't see what the docs have to lose by testing and treating. If that satisfies the patients curiosity why not do it? And heck that patient just might be one of the few who do have symptoms caused by ureaplasma. It's a win-win situation if you ask me. I just do not understand why more docs don't approach the situation like this.

The other problem really comes in when the doctor has his mind made up that Mycoplasma doesn't cause symptoms and therefore he's not even going to mention it to the patient. That really leaves the patient in the dark and I believe that is the total wrong way to handle the situation. Share the info. with the patient and say MOST cases of mycoplasma don't cause symptoms, however the decision to test for it is upto you. With holding info. like that is totally wrong.

Erica

[Sarojini]

Sure -- these organisms can colonize many without symptoms, but they can cause problems in some. While I personally don't believe them to be the cause of my IC, and I am not exploring these options personally, I do think everyone has the right to explore avenues they believe are important.

Unfortunately, doctors often do not comply; sometimes it is due to expense of testing, sometimes it's laziness, sometimes it's because most of their patients have no symptoms from such infections, and sometimes we just don't know why.

I am glad you both (Jane and Romans) have doctors who are willing to work with you on subjects you feel are important to your recovery. I am also happy that you are delving into science texts -- that is one thing many people do not do these days, and I am especially happy to see that you, Romans, are doing such research with your home-schooled children! :) Just keep an open mind to all things -- as someone with a career in science, the best advice I can offer you is to keep that mind open and do not let it slam shut and clamp on to only one explanation for ANYTHING in this world. Even if it seems to explain everything, it actually may not be correct, or correct in every case. You will find that the more you study, the more questions you will have, and that is NORMAL -- in laboratory science it is always that way, and it is through asking questions we make progress.

NOW PLAY NICE WITH EACH OTHER ;) LOL :biglaugh:

[emilyrose197377]

what is mycoplasma?

[glenda]

I want to appologize if I came off as hostile. It may have been due to the repeated disregard of my suggestions and concerns. It doesn't make sense why all of the threads I post on about a "possible" bacterial/viral connection get closed. Anyway, I'm not normally a hostile person, and I don't want to seem like I am. I'm sorry!

[Romans8:28]

mycoplasmas are the smallest known free living organism. In other words they are the smallest known bacteria, they are the size of large viruses. That is part of what makes them difficult to culture for. Most light microscopes can not see viruses only bacteria. From what I understand these need a PCR, dark field microscope or a illuminometer to find. That is part of why many doctors don't know a lot about them. They do not have a cell wall, and are not stained by gram stains. I am not even trying to culture for these as we experiment, it takes special equipment! They also are widely distributed in nature, and as was mentioned in humans, animals and the enviroment. They are a opportunistic pathogen. They typically colonize the respiratory and genitourinary tract. They can live for years undected asymptomatic but given the right conditions, do cause disease!

Glenda, I'm sorry if you felt I was discounted what you had to say! Didn't want to come across that way at all! :grouphug: I too have been frustrated by some, not you, who act as if they have THE answer no matter what the evidence or who gets hurt. I'm sorry if I took that out on you!
So as Jen says lets play nice here and see if we can't help one another in the process!

[PlainJane]

I want to appologize if I came off as hostile. It may have been due to the repeated disregard of my suggestions and concerns. It doesn't make sense why all of the threads I post on about a "possible" bacterial/viral connection get closed. Anyway, I'm not normally a hostile person, and I don't want to seem like I am. I'm sorry!

Hi Glenda,

You aren't hostile you are passionate about this subject and you want to help people. I know there is no one definite cause for all IC but I agree with you that bacteria (mycoplasma, STDs) can be a cause for some patients some patients.

I totally understand your desire to share your research, findings and personal experience. I too will share any info. I find that might help someone. I wish I could help even just one person get well from IC. It is such a horrible problem to suffer with. I think the best we can do is share our findings and hope that it does help someone.

Erica

[Romans8:28]

PS Jen
Thank you for your kind words of encouragement!
YOu are right the more I study the more I am amazed at the complexity of the human body and how individually unique each person is. Tuthfully the heart of my search is biofilm infections since I seem to be fighting a bad one. Mycoplasmas etc. just kept coming into the picture too! It is amazing to me the number of bacteria, especially gram neg ones that can form complex biofilms. It is also strange how many ICer's I have talked to have been diagnoised with these original bacteria at one time, pseudomonas aeruginosa., (this is the one I had that was never treated properly), h.pylori, e. Coli, lyme disease and though a gram pos. enterococcus faecalis & faecium, I'm sure there are many others too. As you said I have many questions, one is does this type of enterococcus form biofilms because it also has some gram neg characteristic. Second I wonder if since mycoplasma are an oppotunistic bacteria if somehow they often use one of these biofilm infections as the opportunity they need to cause disease.
Jen or anyone have and ideas on this?

[glenda]

Thank you Erica.
This theory does need to be better supported! It could help a lot of people that are simply left uninformed. There is a lot of information that doesn't get posted here, or the propper attention. (hugs)


Romans,

I'm not sure about the enterococcus spacificly, but I believe it's been noted by some researchers that there are different bacteria and of course viruses that use other bacteria as hosts, producing kind of a mixed infection. The host bacteria can support the other bacteria and transport it throughout the body to different organs in the bloodstream (causing disease in some patients). You sound like you know a lot, so keep posting and "teach us what you know"!

[Romans8:28]

Thanks, don't know a lot just trying to figure out how to get well, like a lot of us!
But thanks for the input, it helps!

At this point, I figured sharing our questions may also help to find answers, for each of us! Thanks for letting me question!
I also realize as Jen said
"Even if it seems to explain everything, it actually may not be correct, or correct in every case. You will find that the more you study, the more questions you will have, and that is NORMAL -- in laboratory science it is always that way, and it is through asking questions we make progress."

[ICLori]

I keep thinking about how they found out that bacteria from teeth in the mouth can cause heart attacks!

I know they have discovered this APF stuff...but what triggers the APF stuff to be produced? I have to wonder if there is first a bacterial infection, then it triggers the APF...

That one doctor who came on the boards...was it about a year ago? Said he believed many cases of IC were caused by regular bacteria burrowing into the lining of the bladder. He would cauterize the linings of the bladder of some of his patients and they would get better. He said the antibiotics could not reach into there very well.

It's all a big mystery...very excited by all the research that is going on, and I hope that this research leads to a cure/way to prevent it soon.

Blessings,
Lori

[Romans8:28]

Lori that is a very good question and it also makes me think of Dr. Theoharis (sp) research on mast cells. Mast cells are known to be in a higher # in IC patients but why? The answer or trigger may turn out to be different for each of, and may account for the many differences. I know he mentions stress,and to me in my life "the" bad infection caused a lot of stress in my body.
I don't know what cause APF
I looked it up this in a search of theICN and found this
http://www.ic-network.com/guestlectures/warrentranscript.html
It gives a different light to the bacterial connection,

anyway in it it says that APF is peptide small protein, that inhibits the growth of the epithelial cells in the bladder. I have no idea if it's connected or not.., but I noticed I often spill protein on my urine tests. According to my midwifery books, (no I am not a midwife but studied some), protein can mean two things, not eating enought complete protein=poor diet but if the diet is good, which mine is, it says, some bacteria also give off protein and to consider that.??
Like Jen said more questions.., I wish Dr. Cassell would come back on or another microbiologist that could answer some questions

[purpleviolet]

I found this website which talked about these organisms. It seems some cause urethritis.
It also seems it is hard to test for? I don't think standard urine cultures catch this. I'm still trying to understand this stuff. Remember awhile ago the study showing doxycycline helping some? I a think it works against these organisms.

http://www.nih.go.jp/JJID/57/17.pdf

[glenda]

Romans,
Hi! I'd like to say that I think I know what study that was, meaning I read about this one. If you noticed, the study "group" was small, very small in my opinion. If it's the one I'm relating it to, there were only about fifty subjects. And, If you noticed, this report didn't s specify the number, which makes me assume they didn't want us to know. Also, half of the group dropped out before the end of the study and the results were established. Again, I only breifly went over the link you posted, so I'm not sure if its the same study, but it sounds like the one.

In addition, they mentioned they didn't know if any other studies were done on this subject, however I think there were, they were just from smaller, less established labs that didn't have the means to publisize their results world wide. Besides, SINCE then there have been MANY studies on various illnesses and bacteria which relate to our symptoms very much!

Now, Im trying to remember some things I've read, and I'm sure I have read that bacteria can and do release protiens.

Thank you all for your support on this subject, It could be a very important link, and we need to have discussions about it. I appreciate that we are now being permitted to do so. Thank you, thank you, thank you!

[Romans8:28]

Pupleviolet. I looked up that report and downloaded, it looks excellent too!

Glenda, your right there are a lot of things in that study to consider.
For me the thought that maybe IC causes the bacteria instead of bacteria causing IC is something to be consider. In other words, maybe the IC damaged bladder lining is more susceptible to bacteria that don't always cause disease in others. It really is the which came first the chicken or the egg syndrome. (This therory is also mentioned in the mycoplasma research about other disease they have been connected with.)
Either way, it encouarages testing early on in the IC diagnosis process, and at least trying antibiotics. It also important in treating the IC patient because a bacteria that might not bother others can cause BIG problems for us. I did find it interesting the explaination that it could not be connected with an STD because we would see more symptoms in both partners. But from what I've read Dr. T says that a man could be asymptomatic even when the women shows signs of infection, which is why he will only treat both people! Even with the theory given that IC causes bacteria not vice versa, this should be a consideration.
Truthfully for me it makes me wonder, if maybe I had mild IC (from what ever cause :) ) and the pseudomonas infection, without proper treating, the calcium in my kidneys etc became the very fertile ground for a biofilm infection, and is what makes is so much harder to get rid of!
Thanks for the discussion it helps me to think things through!

[glenda]

OK, this is how I see it-
What is causing the lining of our bladders to be destroyed? If it is our own immune system, what is causing our immune system to act out? Is our God given immune system dumb enough to act out against nothing? I don't think so. This protein factor that is being found in the bladders of ic patients, what is causing it? I've said, I'm sure I've read that bacteria releases proteins. Also, ic patients systems tend to produce more acid than the average persons, why? Our immune systems naturally produce extra acid when it feels threatened, as a natural defense mechinism. All I'm saying is that this disease has to be caused by something. What could possibly cause it? Well, what causes illness? Invading pathogens, simply. And to add to this, researchers are finding increasing numbers of antibiotic resistant pathogens, so even if you've taken lots of antibiotics and havn't been cured, it doesn't necessarily mean that you don't have an infection. Also, I think I can say this as a fact, that there are probably hundreds, even millions of bacteria that haven't even been discovered yet. Just because something hasn't been discovered "yet" doesn't mean that it doesn't exist. But in order for scientists to be able to make active drugs to fight against all of these pathogens, there has to be more research in identifying them. Patients and Medical professionals need to take active stands and demand more research on this particular subect. If no one shows an interest in it, no one's gonna research it. Thats it.

Purpleviolet, Thank you for the info.!

[glenda]

OK, anyone who has a couple of moments and is interested in the subject of antibiotic resistant bacteria, try this, it's an interesting study. Do a search on " National German multicenter study on prevalence of antibiotic resistance in staphylococcal... ".
It should be the first one, just click on it.

[Sarojini]

Actually, our "God-given" immune system acts out against things for nothing all the time -- those with lupus, rheumatoid arthritis, and other autoimmune diseases deal with this situation. In fact, those with allergies could be considered to have immune systems that act out against "nothing" -- they react to things that are normally considered harmless, and there is absolutely no evidence that a bacterial infection precipitates allergies.

[glenda]

Jen,
Researchers have been finding links to such diseases and bacterial/viral infections. Lupus and rheumatoid arthritis are actually a couple of the top diseases that they are discovering this with. There have been extensive studies done recently showing that these patients are commonly infected with different pathogens, such as mycobacterias and mycoplasmas. Allergies could also be linked to an underlying systemic infection if you consider the fact that it's just another illness that the specialists havn't discovered the cause of, yet. I'm glad to see your interested in this! Thank you for sharing.

[Janie Miranda]

I've been following these threads with interest and just a little while ago this information was posted on another list I'm on. What do you guys make of this:

Chlamydia Pneumoniae in Interstitial Cystitus
POTENTIAL ROLE OF CHLAMYDIA PNEUMONIAE IN THE PATHOGENESIS OF INTERSTITIAL CYSTITIS. Gregory L.
Alberts, Charles W. Stratton, William M. Mitchell, Jenny J. Franke. Vanderbilt University School
of Medicine, Nashville, TN

INTRODUCTION: Chlamydia pneumoniae is now recognized as an important human pathogen. As an
obligate intracellulari parasite, it is difficult to detect by routine cultures, can cause chronic
infections, and may not elicit an acute inflammatory response. C. pneumoniae is commonly
associated with respiratory tract infection, but has also been implicated in the development of
coronary artery plaques and chronic inflammatory conditions such as multiple sclerosis. Our recent
data using polymerase chain reaction (PCRi) analysis of urine revealed that 71% of patients with
interstitial cystitis (IC) were positive for C. pneumoniae. These data suggest a potential role
for this organism in the development of IC. We present our data using tissue culture detection of
C. pneumoniae in both control patients and patients with interstitial cystitis to further
investigate this association.

[ICLori]

Wow, JanieMiranda, that's really interesting! That goes with what I was thinking, that maybe there is some bacteria that is either there but hidden, or else came and went away again, that triggers the production of APF by the bladder.

These are some really cool theories! I agree, more research needs to be done on all of this - the more we learn, the better off we will be!

Blessings,
Lori

[Janie Miranda]

Lori,
I just googled:
Chlamydia Pneumoniae in Interstitial Cystitis

and came up with a whole lot of articles concerning that research in TN. From what I can tell most of the articles are from 1999- 2001 so I don't know what has become of the research. If anyone finds anything new on this, I sure would like to read it.

[glenda]

Janie,
That's great! I'm so glad you posted that. I read that before, but forgot about it.
Here is another link about the connection between autoimmune diseases and bacteria. This goes with my last post where I mentioned about the reumatoid arthritis and mycoplasma connection.

http://www.thyroid-info.com/articles/brownstein.htm

[ICLori]

I wonder if Doxycycline would be effective against this bug? Maybe that's why some patients originally diagnosed with IC seemed to get better on it?

I got a five-month remission that was either from Doxy or Elmiron, not sure which because I started them both at the same time. But then they both stopped working. If my remission was from the Doxy, maybe my hubby and I were passing this bug between us, and eventually it became antibiotic-resistant since I was on the Doxy all the time.

Just thinking out loud. This IC stuff really is a mystery, isn't it?

Blessings,
Lori

[glenda]

Lori,
Yes, thats a good insight! There are "some" MD's that believe these "bugs" can be, and are passed this way, in many cases.

[Janie Miranda]

Apparently the ICN site has some info on this too. Can be found here:
http://www.ic-network.com/newsroom/vanderbilt060601.html

[glenda]

Here is another interesting article about tuberculosis in relation with urinary symptoms:

http://www.emedicine.com/radio/topic721.htm

[Romans8:28]

I know where you are coming from, the evidence for some kind of connection to bacteria is overwhelming. I know personally about bacterial resistance since the ONLY antibiotic that helps this in my kidneys is Cipro.(Dr says the next step is IV's) but Glenda like me even if it is bacteria I noticed under your name you are using lots of other meds too!
I believe that some maybe concerned that we are suggesting that antibiotics alone are the treatment for IC. I could not survive without some of my other treatments too, and have read post from others who suffered going DR to DR and only being offered antibiotics. Read one but couldn't find it again from a lady in IRELAND that had been tested over and over for many STD's and only offered antibiotics and is desperate for some pain relief.
I'm not asking you to back tract on the research, what I am saying is even as you mentioned it can be antibiotic resistant etc, so as we search for a cause we also need to allow for coping tools to get through today. I believe from what I've read you are with me but would you at least clarify that for the patient who is reading these posts at 2:00 am hurting & feeling guilty they have to take pain meds etc.??

[glenda]

Romans,

My signature corresponds to my past treatments. I'm not taking anything now except tylenol or prelief "once in a while". Too many side affects to all of the different drugs I've been prescribed over the years. And no, I don't want to make anyone feel guilty for having to suffer with a disease, quite the contrary. I want to let them know that there is hope, but they need to investigate further. If we don't put pressure on our physicians to figure this out, who will? A lot of people who are suffering may not have to suffer, all they need is direction and recognition. They are lacking this type of information, cuz it doesn't get posted or supported here, and this is where people come for answers cuz they don't know where else to go. There isn't enough of this research being publicized. And, as long as people are coming here for answeres, I think it's our responsibility, as co-icers, to display this information for them. It should just be more publicized and supported. I certainly don't want anyone to suffer, that's why I feel so stongly about this. It's so important that people are being informed of ALL of the facts and possibilities.

[PlainJane]

I remember talking to Dr.Toth about the antibiotic treatment and he said there is a chance it can work even if there is no bacteria that is detected by lab tests. At least that is what I understood from our conversation. He has something to do with getting the immune system to calm down; the antibiotics can help do this. I haven't yet finished reading his two books, I'm slowly working my way through them. They are very interesting books it's just that my concentration isn't very good.

Anyway, I just thought I would mention this because I just remembered it.


Erica

[PlainJane]

I wonder if Doxycycline would be effective against this bug? Maybe that's why some patients originally diagnosed with IC seemed to get better on it?

I too wonder why some patients originally diagnosed with IC get better on Doxy.


I got a five-month remission that was either from Doxy or Elmiron, not sure which because I started them both at the same time. But then they both stopped working. If my remission was from the Doxy, maybe my hubby and I were passing this bug between us, and eventually it became antibiotic-resistant since I was on the Doxy all the time.

Lori

Just from my research on the internet and in books it sounds like your theory could totally be right. A lot of times couples pass bacteria back and forth and don't even know it. I am learning so much about this stuff.

It must have been very upsetting to go from five month remission back to having symptoms. I know when I was getting the IV therapy and bladder lavages I had about a two day remission and I was beyond thrilled. Then my symptoms came back and I was so upset because I thought the treatment wasn't working and that I would never get better. It was very upsetting. Even now I am feeling very lousy on antibiotics and am having a hard time "keeping it in perspective". I am just so sick of being sick! But that's a little off topic for this thread maybe?

This thread is good, I'm learning! :)

Erica

[purpleviolet]

Its very interesting about ICLori on doxy and getting better, maybe from it, maybe not, but maybe passing it back and forth... and I don't understand how this bacterium or mycoplasma shows up in 70% of IC patients and at the same time studies show no DNA of bacteria in the bladder (or were they just testing for certain bacteria)? I know its rougher on the IC bladder to have an infection. I think we will be able to put the pieces together maybe before the average doc does, because they don't read all these studies. I wish I had studied biochemistry in college so that I could understand some of the language better. I enjoy reading everyones' post here because you all seem so intelligent and thoughtful. PeeVee

[Romans8:28]

Glenda I really do understand your drive to get this information out and I agree with that. That is part of why I have spent many hours researching and posted this information in the first place. It is also why my dream is to go back to school. I also realize that many veteran Icer’s have had to fight to for years to help those, who maybe antibiotics didn’t help to get other treatments. All I’m saying as we educate our doctors etc. we want to go forward in treatment options without losing the ground we already have. In this battle we just need to be careful not to have many causalities from “friendly fire”

Doxycycline is a tetracycline it is effective against many gram pos. cocci, many gram neg. organisms and many anaerobic organisms. The type of pseudomonas I have is resistant to it. (some of this I shared on another post, with the websites etc.)
Treatment options for mycoplasmas:
Many doctors are treating this with long term antibiotic therapy. According to the article Stealth pathogens, “one of the more popular conventional protocols involves rotating multiple 6 week cycles of Minocycline or doxycycline (200-300mg/day, Ciproflaxin (1,500 mg/day) Azithromycin (200-500mg/day) or Clarithromycin, (750-1,000mg, day) among others.” (these are very high doses and as I mentioned would not help the type of infection I have, which is why I believe we really need to push for better testing!)
The article also says that many doctors now believe that antibiotics alone should not be used without addressing the rebuilding of our immune system and this is imperative for a complete recovery. Because of the side effects of antibiotics many are also recommending using alternative natural antibiotics first. Dr Garth Nicholson even says that “UNLESS” the kidney/flank pain accompanies this there is no reason natures should not be tried first.
There are some naturals listed on this website, *****. I have not tried them so cannot recommend them one way or another. I was able to use a product called Silverbiotics, by American Biotech labs. This has helped me tremendously giving my 1-year off antibiotics and as I take it now with my Cipro allows me to live on a lower dose. This product is a FDA approved antiseptic and is effective against many kinds of bacteria. They are also using it treat radiation burns in cancer, and I believe has a lot of potential to help IC. It is not like regular colloidal silver, and has been well tested. I take this orally and instill directly into the bladder, with permission from the company and my doctor! Though the website has lots of research the product are much more expensive there. Check your local health food store or pm me for the one here who carries it for a lot less!
Katrina’s article also mentioned some naturals.., I have also used garlic, goldenseal/echinacea (be careful goldenseal lowers blood sugar)


For testing of mycoplasmas, I found these! I have never used them, since in order to be tested your supposed to be off antibiotics for weeks and some say 4mos. This is not an option for me. So please check them out first.

All for today have to start pouring our culture dishes to begin culturing and have a late appointment with my doctor. He schedules me the end of the day so we can discuss the research I find! :)


Edited to remove advertising sites. If a web site is selling a product, please contact us to request permission before posting. Thank you. ICNDonna

[glenda]

Thank you for the information Romans! I'm gonna leave it at this - I just want to encourage people to research this and talk to your MD's about it. They will probably look at you like you are crazy, or disagree with what you present to them, but that is the point. I mean, your dortors are just as mis-informed as we are about all of this. Someone needs to draw their attention to it so we can get better tests and treatments in the near future. THANK YOU EVERYONE, for your interests and involvement!!!!!!!! This is a big step forward, in my opinion. (what a beautiful day!)

[Katrina]

I remember talking to Dr.Toth about the antibiotic treatment and he said there is a chance it can work even if there is no bacteria that is detected by lab tests. At least that is what I understood from our conversation. He has something to do with getting the immune system to calm down; the antibiotics can help do this.
Agreed.

Remember that as they see bacteria in things previously believed did not have a bacteria cause they are also seeing bacteria in people with no symptoms. The bacteria may play a roll but there must be more to it.

[Romans8:28]

I forgot to add this about the silver. The silverbiotics is also great for getting rid of yeast. Both taking it orally and vaginally. With all the antiobiotics I find using it preventively daily 1tsp in a baby syringe instilled vaginally etc. helps alot. If you have an active yeast infection they recommend 1tsp vaginally 3x a day.

Had great visit with my doctor,he really is awesome. Funny though, he seems to know a lot about the IC community. He said how so often a group will come to a conclusion and assume this is it, for everyone etc. I have often seen this over one bacteria or another. Therefor people are turned off basically.
He (by the way is willing to try anything I want as he says thats, legal, moral and not dangerous etc.), says untill we get better double blind studies with better testing etc. no one will really know for sure..,
so in the meantime I take my Cipro, use my IC meds and treatments both natural and moderne medicine, and try to function every day!
..., now that the culture dishes are poured and waiting..., I just need to figure out how to convince my husband to let me culture him..., he's not on antibiotics, hmmmmm :biglaugh: My doctor gave me the sterile cups and tomorrow the kids are going to learn how to culture themselves..,
Great family fun only IC research can create ;)

[Romans8:28]

Sorry see my websites were edited, whoops, didn't know that is a no no! :bonk:
if you want the information on these websites feel free to e-mail or pm me!

[glenda]

I'd like to just point out that I never implied that ic was caused by only one particular organism. It's obvious that many of us have been diagnosed with different ones, which would imply that ic is not the same thing in everyone. Romans, I understand your point, and I am not in disagreement with you. I am glad you gave a good doctor and that he is willing to try anything within reason!!! Many of us arn't as lucky to find someone like that.

I wanted to post this link, just cuz I found humor in it. I hope others do to. It's about chlamydial bacteria in relation to cronic illness' with no known cause.

http://www.cpnhelp.org/?q=doctorsresistance

The page is being reconstructed, but scroll down and read what is there.

[Romans8:28]

Glenda wasn't talking about you. This debate has been going on for years. Even though I see bacerial connections, the many people, websites, and doctors research I've read by those that believe bacteria is THE cause for IC, I've been turned off, as has my doctor and others by the attitude often protrayed. So many of my comments through all of this really havn't been directed at you, but at a frustration in the IC community. I will say this I post here because I feel that the ICN does try to be fair, and yet protective and at least is willing to post different reserach so we can decide for ourselves.
There are other websites that believe IC is bacterial, you can't post anything there that would disagree or question that approach, but have read many unkind comments about this websites monitoring etc.,, Just seems a little hypocritical to me. :hmm:

Thanks for the article. It is interesting..., hope we can push for and see better treatments and testing for all these things, and maybe someday more healing and cooperation in the whole IC community! :grouphug:

[glenda]

[QUOTE]There are other websites that believe ic is bacterial, you can't post anything there that would disagree or question that approach, but have read many unkind comments about this websites monitoring ect.

I have to say that I'm in disagreement here. "They" are much more open than you've described, and much more helpful at that. I'm sorry if you have had negative encounters elswhere, though. I think we all have, somewhere along the line.

This has been a good conversation, and I'm glad that it exists. I also, mean no harm, or direct any negative emotions twards anyone. I desperately want us all to get well soon! :kissing:

[ICNDonna]

I am closing this thread because it has become a discussion about web sites.

If you wish to continue discussion, please start the topic again, but refrain from negative comments concerning any other site.

Thank you.

Donna