My Experience with Levofloxacin
My latest treatment has been aggressive high-dose long-term antibiotics called Levofloxacin, sometimes known as Levaquin. I have been pretty quiet on the blog while I did this. I have just finished 4 months of doing 500mg of Levofloxacin daily, and switched to another antibiotic (which I will talk about in another post). There is no pause, so the bugs won't have a chance to grow, so after my last Levofloxacin tablet, I started the others the next morning. This probably sounds shocking to many readers on how long I have been on antibiotics. It also surprised the pharmacist when I went to get these.
But if you read Professor Malone-Lee's treatments in the UK, he has been putting patients on 1 year, 2 year or longer antibiotics. Some heal in a few months, some heal in a year, and others 2 years or longer. If I recall, he doesn't really like to put patients on fluoroquinolones. I'm not sure, I forgot.
Levofloxacin is a fluoroquinolone class of antibiotics with a broad spectrum of activity against Gram-positive and Gram-negative bacteria. Here is a link about it if you want to read what Levofloxacin is. I am also well aware that it is a black box drug, which you can read about here.
Even though I knew the risks associated with this antibiotics, and I have met women who have been floxed by this class of drugs, I wanted to do it to see if it would help my bladder. My Pathnostics test revealed that my pathogens were incredibly sensitive to Ciprofloxacin and Levofloxacin. But my Microgen DX test revealed that I have a Quinolone resistance in the pathogens' genes. However, in my entire history of previous normal UTIs, they were all killed successfully by Ciprofloxacin when all other pills wouldn't work. I also learned from doctors that even though a resistance gene is detected in your pathogens, it doesn't necessarily mean the antibiotic can't kill the bug. It may mean you just need a higher dose to combat it.
When I started the Levofloxacin, I'll call it Levo for short, I had no side effects. All these ladies on Facebook were warning me that I would get floxed or die or what-not, but you see, with this bladder, I felt I was already dead, so I had nothing to lose.
End of August: The first month on Levo I was perfectly fine. My bladder felt the same, it was too early to tell if this is working.
September: But on the 2nd month, for a full 5 weeks, I had the strangest nausea come on. I thought it was food poisoning or a food bug at first. It got pretty severe. It felt like I had a nauseous stomach flu or stomach ache (no diarrhea) or morning sickness. It was always really bad in the morning and would be much milder in the evening. There were some days that it was so bad that I could barely walk, and I constantly had this bizarre motion sickness with it. So riding in a car was hard. I told myself, "Just keep tolerating, keep going. You must find out if it can heal the bladder." No difference in bladder.
October: After 5 weeks, it lifted. It was so strange. Either my body adapted, or maybe it was because I stopped the gut probiotics. I wasn't sure if my probiotics helped or worsened it. I will never know. Coincidentally, after I stopped that particular gut probiotics called Garden of Life, everything returned to normal. The other probiotics I took with Levo are Florastor probiotics, which I still take today and did not stop that one. But the strange thing was that I only had a two day menstrual cycle and the blood was very very little. But I noticed the bladder was doing better. Not significantly, but a definite improvement. I was now venturing to eat more foods and can proudly say that the amount of food I can ingest doubled!
November: Menstrual cycle did not come. I don't know if this is the effect of the antibiotics or something else. But I have a feeling it is the antibiotics since my menstrual cycle was normal up until this new treatment. I'm enjoying eating a lot more foods, sometimes with Prelief, sometimes without. I could never do this before. There are some days I want to cry when I put in some delicious food in my mouth, that I could not eat before. Amazing. I'm not cured and again, it's not a signifcant improvement in the bladder, but it has definitely helped. I don't have bladder pain but I do suffer from mild pelvic pain (it started at the end of March) and it still sicks around even with the antibiotics. But one thing that is different is that it comes and goes, and is much milder while I'm on antibiotics. On some days, the pain is completely gone. The urine noticeably got pretty hot in temperature during September and October. I wasn't sure if this was the antibiotics, but my urine was not hot prior to this treatment. Starting near the end of November, I notice my joints getting stiffer. My knee joints and shoulder joints feel like they have a dull achey pain and the joints feel stiff or locked. I believe that this is a side effect of Levo and I remember reading about peoples' tendons tearing. I was careful to walk slow and keep it easy while on this drug. The bladder waxes and wanes, sometimes it feels better and sometimes it feels worse, it's hard to tell. I feel like I have stagnated at this point with this antibiotic.
December: Mensrual cycle hasn't come yet, so I'm a little worried about how this may affect my body. The urine is not hot anymore on most days. I'm not sure why that is, but it's a welcoming sign. The pelvic pain is very small now to not being there at all! I finished this drug on December 9th and started on a different antibiotics on Dec 10. My knee joints still really hurt and feel so stiff, especially when I have slept a night, or sit in a car longer than 15 minutes. I'm hoping that this will disappear in a few days, now that I am off Levo.
Was it worth it to do this antibiotic? At this point, I will say yes. My bladder has improved to the point of allowing me to eat double the foods, and my weight is gaining back. I'm still slightly underweight, but one of my friends said that I now look peach and glowy in the face. Before, when I couldn't eat much from a super sensitive bladder, I was anorexic and my skin was pale and greenish. But I am so relieved to be off it now. I feel like if I had kept going with it, something bad may have happened because my knee joints hurt and feel like they lock up from time-to-time. I never had this problem or weird feeling until after Levo came on. I won't blame anyone about this, because I full well knew and accepted the risks that Quinolones come with. The reason why I am getting off this antibiotics is because I feel that my bladder improved up to a certain point and then stagnated, so I will be switched to a different combination of antibiotics.