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Urine Incontinence
I have ankylosing spondylitis and the doctor suspects that its caused by lyme. My main symptom is continuous lower back pain and I cannot stand, sit or walk for more than 10 min at a time.
Has anyone experienced the symptom of not being able to hold your urine? This problem started suddenly on the day after I started Doxycycline and Biaxin in January 2012. Since then it has got progressively worse. I have to go to the toilet every 20 min even though I don't take any liquid. My skin feels like its drying up and I'm losing a lot of muscle and weight. Has anyone experience this with antibiotics? Do you think it is related to the abx or the Lyme or something else? My last urine test was normal, but with slightly raised sodium. Please could someone advise me on how to proceed?
Has anyone experienced the symptom of not being able to hold your urine? This problem started suddenly on the day after I started Doxycycline and Biaxin in January 2012. Since then it has got progressively worse. I have to go to the toilet every 20 min even though I don't take any liquid. My skin feels like its drying up and I'm losing a lot of muscle and weight. Has anyone experience this with antibiotics? Do you think it is related to the abx or the Lyme or something else? My last urine test was normal, but with slightly raised sodium. Please could someone advise me on how to proceed?
Hi RosaryF How are you feeling now? Please update us! I too have RAPID MUSCLE WASTING PLEASE respond :(((
I have Lyme Bart's and babs and do a rotation protocol.
I take minocycline, a relative of doxy that helps babs too, Zithromax, malarone, and Flagyl.
2 weeks I am on everything but Flagyl.
Next 2 weeks I am off minocycline but on Flagyl, which is a cyst buster
Next 2 weeks I am off mino and Flagyl but take the rest, then the cycle starts again.
Hope this helps.
I take minocycline, a relative of doxy that helps babs too, Zithromax, malarone, and Flagyl.
2 weeks I am on everything but Flagyl.
Next 2 weeks I am off minocycline but on Flagyl, which is a cyst buster
Next 2 weeks I am off mino and Flagyl but take the rest, then the cycle starts again.
Hope this helps.
Hi,
Sorry for not replying in a while. I have been very ill and couldn't use the computer. Please could you send your doctor's details to my email address: rosary.***@**** I will get my friend who is a doctor to liase with him. There is no doctor who is helping with the abx. They haven't been exposed to treating Lyme and they a reluctant to learn. We have to make up our own protocol and get medicines without any doctor (its easier to do that here than other places).
I started my protocol beginning May 2012 with:
- 100mg doxycycline twice daily
- 250mg Plaquenil once a day.
- In mid July, I added Biaxin 500 mg twice a day.
I'm considering changing Biaxin to Azithromycin after 2 more months. I'm not sure when to do Flagyl in all of this and when to do antivirals for 3 months. I plan to take the doxycycline for at least a year.
Please provide any sugestions on my protocol if you can ...
Sorry for not replying in a while. I have been very ill and couldn't use the computer. Please could you send your doctor's details to my email address: rosary.***@**** I will get my friend who is a doctor to liase with him. There is no doctor who is helping with the abx. They haven't been exposed to treating Lyme and they a reluctant to learn. We have to make up our own protocol and get medicines without any doctor (its easier to do that here than other places).
I started my protocol beginning May 2012 with:
- 100mg doxycycline twice daily
- 250mg Plaquenil once a day.
- In mid July, I added Biaxin 500 mg twice a day.
I'm considering changing Biaxin to Azithromycin after 2 more months. I'm not sure when to do Flagyl in all of this and when to do antivirals for 3 months. I plan to take the doxycycline for at least a year.
Please provide any sugestions on my protocol if you can ...
Oh yeah, and when I first did a 24 hour creatinine test last spring, I nearly filled the gallon jug. I was on a lot of meds at that point. When I did it again a couple months later (after I stopped most of my prescription meds), I only produced half that much. I think my kidneys were working very hard to filter out all the medications I was taking. I also think one of my kidneys is infected with Lyme, reducing its capacity.
That is a good thing that your kidney test results are good. It means they are still functioning as they should. In my case, my kidneys won't fully recover until the Lyme is fully treated. But I can only take as many meds as my kidneys can handle. It remains to be seen how much that is. I wish this disease was as simple to treat as the IDSA says it is!
That is a good thing that your kidney test results are good. It means they are still functioning as they should. In my case, my kidneys won't fully recover until the Lyme is fully treated. But I can only take as many meds as my kidneys can handle. It remains to be seen how much that is. I wish this disease was as simple to treat as the IDSA says it is!
I am so glad you have doctors willing to to treat you! My only thought on your medications is that 200mg of doxy sounds low...I have read 400mg for treating Lyme, but then I have also heard that it encourages the spirochetes to form cysts to hide. Since your urinary problems started immediately upon taking doxy, perhaps it is time to switch to something else.
Perhaps given your level of illness you would benefit more from parenteral antibiotics (injections or IV), which are more effective against Lyme. Rocephin is a good one. I am about to restart Bicillin LA shots after a 2 month break. Bicillin is a good alternative. Most people I have heard of who went on Rocephin really started feeling better on it. It wasn't a good choice for me as I had so much pain in my gallbladder at the time. Rocephin can cause a "sludgy" gallbladder.
Would your treating doctor be willing to ask an experienced ILADS doc in the US or Europe for consultations? I know my doc does consultations. I can send you a private message with contact info if you would like.
I understand the difficulty travelling. At my worst, I had terrible upper abdominal and rib pain, so I felt every tiny bump in the road. On top of that I would get carsick, yet another lovely symptom. And my doc is an hour away.
My understanding of Lyme induced incontinence is that Lyme interferes with the nerve signals between the bladder, or the muscles that control it, and the brain. Given your lower back pain and muscle wasting, it sounds like it is all related. I hope the urologist can help. The fact that you're negative for HLA B27 is a good sign. It is better to have a treatable infection than an incurable degenerative disease.
You might also try some supplements to help you feel better. Detoxing is important to help your body get rid of the dead bugs and toxins. Different things have worked for different people, so you might need to do some trial and error to see what works. Chlorella helped me feel better (be sure it is 'broken cell wall'). I was also told to take a parsley extract to support my kidneys when they were overwhelmed. There are many detoxing choices out there.
Hang in there! it sounds like you are reading a lot, which is great.
Just out of curiosity, where do you think you got Lyme? It sounds like it is not there in SA, so I am assuming you got it overseas.
Perhaps given your level of illness you would benefit more from parenteral antibiotics (injections or IV), which are more effective against Lyme. Rocephin is a good one. I am about to restart Bicillin LA shots after a 2 month break. Bicillin is a good alternative. Most people I have heard of who went on Rocephin really started feeling better on it. It wasn't a good choice for me as I had so much pain in my gallbladder at the time. Rocephin can cause a "sludgy" gallbladder.
Would your treating doctor be willing to ask an experienced ILADS doc in the US or Europe for consultations? I know my doc does consultations. I can send you a private message with contact info if you would like.
I understand the difficulty travelling. At my worst, I had terrible upper abdominal and rib pain, so I felt every tiny bump in the road. On top of that I would get carsick, yet another lovely symptom. And my doc is an hour away.
My understanding of Lyme induced incontinence is that Lyme interferes with the nerve signals between the bladder, or the muscles that control it, and the brain. Given your lower back pain and muscle wasting, it sounds like it is all related. I hope the urologist can help. The fact that you're negative for HLA B27 is a good sign. It is better to have a treatable infection than an incurable degenerative disease.
You might also try some supplements to help you feel better. Detoxing is important to help your body get rid of the dead bugs and toxins. Different things have worked for different people, so you might need to do some trial and error to see what works. Chlorella helped me feel better (be sure it is 'broken cell wall'). I was also told to take a parsley extract to support my kidneys when they were overwhelmed. There are many detoxing choices out there.
Hang in there! it sounds like you are reading a lot, which is great.
Just out of curiosity, where do you think you got Lyme? It sounds like it is not there in SA, so I am assuming you got it overseas.
Hi Everyone
Many thanks again for all your help. I will be seeing a urologist. Its just so difficult to travel anywhere because of my back pain. I cannot sit for more than a few minutes and neither can I stand for long.
I have a negative HLA B27 gene. I am following my own protocol of abx based on what I reading on the internet. Here in South africa, no doctor has even heard of lyme except a retired infectious disease doctor professor who thinks its lyme. It is very hard to get abx because the docs are not willing to learn about lyme.
Wanted to know what anti viral meds must I add to the protocol?. I am currently on 200mg doxy; 1000mg biaxin and plaquenil. Incl pain meds and celebrex.
Thanks you so much
Rosary
Many thanks again for all your help. I will be seeing a urologist. Its just so difficult to travel anywhere because of my back pain. I cannot sit for more than a few minutes and neither can I stand for long.
I have a negative HLA B27 gene. I am following my own protocol of abx based on what I reading on the internet. Here in South africa, no doctor has even heard of lyme except a retired infectious disease doctor professor who thinks its lyme. It is very hard to get abx because the docs are not willing to learn about lyme.
Wanted to know what anti viral meds must I add to the protocol?. I am currently on 200mg doxy; 1000mg biaxin and plaquenil. Incl pain meds and celebrex.
Thanks you so much
Rosary
RosaryF, look into a possible coinfection : Klebsiella
If you meet the HLA-B27 genotype profile, the Klebsiella pathogen could cross- react with the HLA-B27. (Have you been tested for HLA-B27?)
Tumour necrosis factor (TNF) could also have a role in this also.
A very simple test!
Avoid ALL carbs and sugars (including artificial sugars as they contribute greatly to TNF) for a week or a few days at least. This will starve the Klebsiella bacteria and you will feel better, should this be the case!
The Klebsiella infection is associated with AS and Urine Incontinence.
Let me know what you think.
Cheers!
Niko
If you meet the HLA-B27 genotype profile, the Klebsiella pathogen could cross- react with the HLA-B27. (Have you been tested for HLA-B27?)
Tumour necrosis factor (TNF) could also have a role in this also.
A very simple test!
Avoid ALL carbs and sugars (including artificial sugars as they contribute greatly to TNF) for a week or a few days at least. This will starve the Klebsiella bacteria and you will feel better, should this be the case!
The Klebsiella infection is associated with AS and Urine Incontinence.
Let me know what you think.
Cheers!
Niko
I followed Burascano for Lyme and then Bartonella. The Levaquin gave me tendinitis so I stopped it. I had back and hip pain before the levaquin now every part of my body aches.
Now I have Babesia as well and I am following Dr James Schallers protocol for Bart's and Babs which is Dr Zhangs HH2 for Bart's as well as minocycline and Mepron and azithromax for Babs. The minocycline also treats Lyme.
Dr Schaller has written books so you could look him up on the Internet. He does tons of research which is good. He also offers expensive consults by phone. My girlfriend sees him since I can't afford him I follow what she does since she has Bart's and Babs too.
Not able to answer your specific question but anything neurological is probably Bart's so I would ask your Dr if they think it's bladder or neurological problem like Rico said.
As for how long treatment can go, it depends on if this is a fairly new infection or an older one. I was told by friends for an older, chronic Lyme at least two years. Someone I know has gone much longer but everyone is different so your could be short. When you start feeling better DO NOT go off your meds for at least 6 weeks in case the ugly critters hide and the pop back out and you get sick again.
Good luck!
Now I have Babesia as well and I am following Dr James Schallers protocol for Bart's and Babs which is Dr Zhangs HH2 for Bart's as well as minocycline and Mepron and azithromax for Babs. The minocycline also treats Lyme.
Dr Schaller has written books so you could look him up on the Internet. He does tons of research which is good. He also offers expensive consults by phone. My girlfriend sees him since I can't afford him I follow what she does since she has Bart's and Babs too.
Not able to answer your specific question but anything neurological is probably Bart's so I would ask your Dr if they think it's bladder or neurological problem like Rico said.
As for how long treatment can go, it depends on if this is a fairly new infection or an older one. I was told by friends for an older, chronic Lyme at least two years. Someone I know has gone much longer but everyone is different so your could be short. When you start feeling better DO NOT go off your meds for at least 6 weeks in case the ugly critters hide and the pop back out and you get sick again.
Good luck!
Also, I forgot to ask. I've been on doxycycline and biaxin for the last 3 months. My condition has gone worse. Out of your experience, when should I expect to see some improvement? My other meds (are plaquenil and methrotrexate - still on 5 pills a week because of the pain - plan to stop as soon as the pain eases a bit). I am planning to take antivirals as well. How long should I wait before starting anitvirals. I've read that I have to be completely off methotrexate before starting antivirals.
Thanks everyone for all your help and advice. My muscles are gone very weak similar to what some of you describe. My lower back pain is my main problem. My lower back muscles are so weak that every movement seems to slip my back out. I was wondering if my weak bladder is related to the weak muscles. We don't have any LLMDs in SA. The Rheumatologist and an Infectious Disease doctor are treating me for the Lyme. I'm feeding them with info from Burascano and Nicolson and they are trying to treat accordingly. They don't know whats wrong with the bladder because glucose test, urine test and kidney blood tests seem fine. I'm trying to setup an appointment with a Urologist to see what he thinks.
What does your doctor say about it? Is it a neurological issue (where Lyme mimics diabetes insipidus) or an actual bladder problem? I had a couple rounds of excessive urination, but I haven't had incontinence so I don't know if I can be of much help.
I wonder if you tried different meds if it would make any difference. I had a couple symptoms that started after I started treatment and my herxing has varied with different meds.
I wonder if you tried different meds if it would make any difference. I had a couple symptoms that started after I started treatment and my herxing has varied with different meds.
When I first started Doxy, I lost 40 lbs in a month and I looked like a scary sickly skeleton. I had constant diarrhea but not urinary incontinence. My skin was dry and I lost lots of muscle. After a few months I got better, you need to drink lots of water.
Welcome -- sorry to hear about all you are going through.
I just did a quick google search for
lyme disease urinary incontinence
and got many links. It appears that urinary incontinence can indeed be a symptom of Lyme.
I see you are in South Africa, and am not familiar with the approaches taken in treating Lyme there, nor with the strains of Lyme found there and their particular characteristics. My next thought would be to get a second opinion from another MD. Sometimes a fresh review of the situation can identify things the earlier doctor did not recognize.
Here is a blog that may be of interest:
lymediseaseinsouthafrica [dot] blogspot [dot] com/
I am sorry not to be of more help -- perhaps someone else here can comment more specifically.
Best wishes to you -- please let us know how you do --
I just did a quick google search for
lyme disease urinary incontinence
and got many links. It appears that urinary incontinence can indeed be a symptom of Lyme.
I see you are in South Africa, and am not familiar with the approaches taken in treating Lyme there, nor with the strains of Lyme found there and their particular characteristics. My next thought would be to get a second opinion from another MD. Sometimes a fresh review of the situation can identify things the earlier doctor did not recognize.
Here is a blog that may be of interest:
lymediseaseinsouthafrica [dot] blogspot [dot] com/
I am sorry not to be of more help -- perhaps someone else here can comment more specifically.
Best wishes to you -- please let us know how you do --
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