Why Are Some Patients on Antibiotics and Still Not Cured?
I am seeing a lot of patients on long-term antibiotics, ranging from several months to several years, battling their embedded urinary tract infections. Many of them were told they had an 'incurable interstitial cystitis' diagnosis.
Before I begin, I would like to say that firstly, I do believe that interstitial cystitis is NOT a diagnosis. My infectious disease doctor said, "Interstitial Cystitis is not a diagnosis, it just means we don't know what is going on with your bladder." I agree. I believe it means that there is something going on, and there can be many causes. Whether it be a chronic or embedded urinary tract infection, or some type of inflammation from allergies, food intolerance, leaky gut, imbalanced hormones, even leaking metal from the silver tooth (pardon my English, but I don't know what the silver metal is called on the tooth that is put from the dentist)... there are a myriad of causes that I have learned after talking to hundreds of women from around the world over the last 1.5 years.
This is just my observation and from conversations I have had with patients suffering from embedded urinary tract infections, stubborn UTIs, or told they have interstitial cystitis. I am not a medical practitioner, so this is just what I have gathered in conversations and is not to be taken as medical advice. These are theories, but also some have been proven, as shown on my Facebook wall of links to research articles. There is also a video I have posted of how the pathogens form a strong wall when antibiotics are out of the system in the bladder. I definitely recommend you view the video of that.
I was recently challenged by an interstitial cystitis patient (which by the way, again, is not a diagnosis, it just means her cause has not yet been found). She asked me on the phone, "Lexie, if a bunch of these ic ladies are supposedly embedded Urinary Tract Infections, then why are they on antibiotics for so long? Shouldn't they be healing? Why does it take so long? Are they barking up the wrong tree?"
It was a great question. A thoughtful one.
I too, had thought about that over the year after watching patients on long term antibiotics in the Professor Malone-Lee's facebook group. In there, I can see patients write everyday, about their symptoms and their treatments. Some have healed and moved on, anywhere from a few months of high dose aggressive antibiotic treatment, while others took a year or a few years to heal and move on. Then there are some who are still on antibiotics, for years onward, and even saw one that was on 10 years so far. So here are my thoughts from talking with various patients, doctors, and reading research material. Again, I am NOT a doctor and this should not be taken as a 100% she is right, and I'm sure if you showed this to your family doctor or urologist, many will laugh and discard my words as nonsensical. But that is because many still live in the Dark Ages, believe that ic is a non-curable disease, and the knowledge of "embedded UTI" is still rather "new".
There are a few mavericks (I love that term, and I mean it in a positive way) who are open minded and researching the embedded UTI bladder microbiome. So far, I have know of Professor Malone-Lee, Ruth Kriz (now retired, which was heartbreaking for me, she was so kind and knowledgeable), Dr. Michael Hsieh, Dr. Roscoe Nelson, Dr. Stewart Bundrick, Dr. Deanna Berman, Dr. Curtis Nickel (I heard rumors that he is stepping down too and someone else will be taking his place) and I am sure there are many more that I do not know about. These are the few that I have spoken with via Facebook or Skype or emails or phone or seen in person. They may or may not support long-term antibiotics, I think one or two of the doctors listed here are more of holistic methodology. But what I love about them is that they are open to embedded UTI theory. Oh, and before you pooh pooh this theory, watch the video I posted on my Facebook of what happens when antibiotics is out of the system - the pathogens form a wall in that video.
So let's get back on track to the question.
"If these ic ladies are supposedly embedded Urinary Tract Infections, then why are they on antibiotics for so long? Shouldn't they be healing?"
Answer Theory 1: Some people are just put on the wrong antibiotics forever and ever, or a guessing game, which happened to me as well. Your GP could be guessing around. Even after people do their Microgen DX or Aperiomics (or just standard culture tests which we all know by now are useless), it doesn't necessarily say which antibiotics would 100% work. That is why I think the perfect solution would be a sensitive test that tests antibiotic sensitivity on the pathogens, which Pathnostics is doing (and I will talk about that in a future post). So your doctor will give a list of recommendations and this leads to a lot of time passed while people are tackling and trying out different antibiotics, until they get the right combination or the right antibiotic for the pathogens. But how lucky are we when we find the right combination? How long does it take? So a lot of time can pass by as we continue trying and trying.
Answer Theory 2: I've seen so many of other patients' DNA next generation Microgen DX tests (and myself included) where the pathogens are resistant to certain antibiotics so it doesn't work as well. It doesn't necessarily mean the antibiotics would not work, it could mean that the bugs are learning to be smarter against the antibiotic, but then a higher dosage of the antibiotic may be able to work. Or perhaps a second antibiotic is needed to back up antibiotic 1, some patients have been put on revolving antibiotics. I have read conflicting research where it can aggressively kill the pathogens, and other research saying that it build resistance. So it's a murky world of bladder articles I come across on the net and in my alumni medical library.
Answer Theory 3: Biofilms in the bladder. Pathogens can form a biofilm (colonize) and form a "blanket" or "slime" and protect themselves from the antibiotics being able to touch them. So even if someone is ingesting the right antibiotics for the bugs, it can still be useless as the antibiotics are unable to touch the "biofilm shield" that the pathogens have built. One lady in my FB wall mentioned she had a cystoscopy done and the urologist could SEE the biofilms She and her husband witnessed it via the cystoscopy camera too, she said it looked like peeling layers of sunburn inside the urethra, layers and layers of blanket biofilm. The urologist remarked, "No wonder the antibiotics cannot touch them." This is so exciting for me, I wish I had been there to take a video and photos of the biofilm.
Answer Theory 4: The bladder itself has many layers, called epithelial layers. So pathogens can continue to dig deep and burrow below (yes they have that ability). I released a link that Professor Malone-Lee gave to me before, and posted it up somewhere on my feed about an illustration on this. It's hosted on a Chronic UTI website. You will have to search my Facebook wall for the article. Even more interesting, the bladder sheds but as it does, it takes around 3 months to fully shed all the layers. So this is also why it takes so long to fight the bugs. Even more terrifying, while the bladder is shedding layers, if you don't have the right antibiotics to kill the pathogens that are shedding out with the layers, they can just go back to burrowing into your bladder layers and you have this "forever UTI". Terrifying but so fascinating.
Answer Theory 5: Some patients I have talked to are mistakenly given low dose antibiotics, which builds resistance, and cannot even touch the pathogens at all. I've talked to patients on the phone on extremely low dose macrobids or Keflex, that isn't going to work! It's just a weak dose in, and isn't solving the problem. I posted on my Facebook wall of a screenshot about a woman who suffered from interstitial cystitis for 5 years. The screenshot was sent in by one of my Chinese blog readers. So the woman went on an aggressive high dose oral antibiotics and IV antibiotics and was CURED in 2 months. Look for the post, and it's in Chinese. Have a Chinese translator read it to you if you are interested. Please don't ask me, I am swamped already with pending messages from months ago and will not be able to answer. Sorry about that.
Answer Theory 6: The pathogens are so deeply embedded, so deeply in the bladder layers and/or formed biofilm pods (watch the video on my wall, like I mentioned), that it will now take even higher doses and more concentrated and longer length of time of antibiotics to kill the pathogens. Watch the video, it's terrifying how the loosely pathogens get together to form a powerful wall together. It's somewhere on my feed, a month ago somewhere.
Answer Theory 7: You may not actually have an embedded UTI. It could be something else. There was a lady whose urine cultures were turning up negative and told she was ok, and that it was all in her head. When she demanded a CAT scan, they found a tiny kidney stone lodged somewhere that was causing her "long-term UTI". Then another lady's was related to her nerves, and so on. However, I will say this: If your problem started with a UTI, high chances it is still the UTI.
Answer Theory 8: Then there is a smaller percentage of those who a different type of infection~viral, parasitic, maybe even some other infection I can’t think of or don’t know about. I remember I read a post about a mother and her child, who tested with urine tests and found nothing for why her child was suffering dysuria (frequency and burning of urine). When they tested with Aperiomics, it turned out it was a parasite. Yes, parasites can get into the bladder! You can check out Dr. Michael Hsieh's Twitter, which talks about childrens' bladder problems and I believe he may have mentioned parasites somewhere in one of his cases. (Thanks to reader KW for adding this)
Answer Theory 9: Rare root cause that is mechanical or bio-mechanical. (Thanks to reader KW for adding this)
I will add more to this post if there are more answers and theories from doctors and readers, but this is what I have so far for now. That being said, I find it fascinating that I meet all these ladies who are told they have "interstitial cystitis" and are "incurable", but the higher probability of success stories I am hearing about or reading about (or told to me by phone) are the ones who went on long-term antibiotics. There are people who have healed naturally, or by silver instillation, or ingest silver, or Chinese medicine, herbs, antibiotic instillations, (many many treatments) but the highest percentage of cured ones are the ones that went on long-term antibiotics.
Again, I am NOT pushing pharma meds or antibiotics. If you have followed my blog over the last 1.5 years, you will know that I strongly was (and still partially am) a holistic and natural person at first. But now, I am batting for the other team and switched my stance to include and put more power in the pharmaceutical antibiotics. So the natural course would be my natural followers / holistic IC patients will now challenge me or vent on my stance. I'm not here to change minds, nor to tell you to change or stop treatment. I'm just writing what I've learned, come across, heard, or talked to with patients and doctors, and read in groups and research and emails.
Disclaimer: read my disclaimer that is everywhere on this blog that I am not a medical practitioner and this blog is only speaking of my experience and from others' experiences that I have heard.