I've had this for years in hands and feet. BTW thanks for the nice replies re my foot pain. I'm using my phone to post since I am mostly bedridden so I can only communicate a little.
Anyway, do those of you with Peripheral Neuropathy have difficulty urinating? Years ago I relied on self catherizing but I don't relish doing it now. LLMD thinks meds will fix it eventually. (IV Rocephan and Biaxin).
He did suggest I try Enablex but the pamphlet says it is for incontinence and not to take it if you have trouble urinating.
I think he believes that all this stuff is CNS related and that the Rocephan heals the brain and thus heals neuro symptoms.
I am becoming more alert, able to read, draw and paint. But breathlessness and fatigue keep me down....also my terrible balance.
I'd love to hear of success with Rocephan!
Posted by Lymetoo (Member # 743) on :
Did you treat babesia?? It causes terrible fatigue and breathlessness.
Regarding the urinary problem... I don't know. I would make sure to treat possible babeisia.
Posted by farraday (Member # 21494) on :
Dr says I do have Babesia as does my spouse. He's much better on Mepron and ?. I'm on daily IV Rocephan and Biaxin....the first for severe neuro symptoms and the second for breathlessness. My immune numbers are very low and his are much higher....he says I'll be on the IVs for a year. I've been sick much longer...over 20 yrs.
Have you been treated successfully?
Posted by Rumigirl (Member # 15091) on :
Yes, the breathlessness, not to mention severe fatigue are from Babesia, and you're not on anything for that. Babesia can also cause urination problems, although it's usually the opposite---not being able to hold it in.
Are you taking anything for yeast? If not, you need that, and top probiotics, too.
For the peripheral neuropathy, the IV rocephin can sometimes fix that, if the damage isn't permanent. IVIG can help a lot, along with the abx treatment.
It sounds like you need more comprehensive treatment.
Glad to hear from you again!
Posted by timaca (Member # 6911) on :
farraday~ Neurological issues were one of my presenting symptoms with my illness. I went to 5 neurologists and no one really knew what was going on with me. They did not think that my burning, sparking, crawling nerves all over my body were neurological in origin. All the tests they ran on me (including EMGs) were normal.
That was in 2004-2006. I haven't seen a neurologist since and have since been diagnosed with chronic viral infections too. See: http://chronicfatigue.stanford.edu/ (See the patient care link if you want to know how to best navigate that website).
After recently upping my dose of valtrex, I've had significant neuro issues. After discussions with my doctor I'm not going to lower the dose at this time, as things seem to be getting better, but I am going to see a neurologist again.
With this most recent flare I can tell that the urinating has been affected. I seem to have more of an urgency to urinate, especially in the a.m. Or a needing to urinate frequently. That seems to be calming down now though.
Have you seen a neurologist?
I was on IV rocephin, as well as doxy and other antibiotics. My nerves did calm down considerably but never went away. And as I mentioned, upping the valtrex dose caused a resurgence of symptoms and a few new ones (which has not been fun). So that is why I've talked with my doctors and will be seeing a neurologist.
Is your PN mainly in your hands and feet? What are your PN symptoms?
Best, Timaca
Posted by gatorade girl (Member # 24896) on :
I did take enablex for burning and not totally emptying my bladder. Lyme does love the bladder and many on here have this issue.
Posted by Tammy N. (Member # 26835) on :
I've been dealing with CNS stuff and neuropathy for 17+ years. I'm finding it's related to parasite infections. I've been stunned to finally learn the importance of dealing with parasites. Wish knew this YEARS ago.
There are so many layers to this illness...but I think parasites are probably the most often overlooked and undertreated, imo.
Since I've begun aggressively treating parasites for 4+ months, I've seen a big sift. Check out several of my past posts.
Best to you.
Posted by twicebitten (Member # 5412) on :
Yes, I have PN. After seeing various neurologists and being dx with MS, "nothing", migraines, and low b-12, etc. The latest neuro decided that neuropathy covers it. He hasn't found the "cause"; however, I know the cause (we all do here). He is unwilling to believe that because he did his "lyme titer test". So, I don't mention it. I've had it for 9 years. The only med that really helps the pain much for me is neurontin. I'm on morphine too, but I've been on the same dose for so long it's not doing much and I'm thinking of getting off it. A couple of docs, including an llmd, have called the urinating problem you describe neurogenic bladder. I have that too. I describe it as having to push very hard (like a difficult bowel movement) to urinate, and not completely emptying the bladder too.
Right now I'm seeing a urologist because I had gone to ER a few weeks ago due to the fact I was having severe pain in R side and back and could not urinate at all. They put in 2 different catheters before they could drain the bladder and dx me with acute UTI. Gave me abx and sent me home. By the time I left my pain was much better. The urologist said after the culture they did came back I had no infection (one white blood cell and one red). He thinks I had a little blood in there and that I probably passed a kidney stone at the hospital.
He was also very upset that they didn't do an x-ray or scan. He ordered a CT scan, which I did on Friday and will see him again on Tue. this week. While I was there last week he did a bladder scan in the office. I had just urinated to give him a sample and they found that my bladder wasn't empty. So, he is thinking the neurogenic bladder is an issue. I don't know what he plans to do about it, but I know the CT scan was for kidneys and bladder. He also said medications can cause that too, like the morphine I take. I told him that I had the bladder issues before I ever took any morphine.
The bladder issues improved some, but did not disappear when I was in lyme treatment. I hope yours disappear. I didn't get to do IV but for 3 months, but I did orals for over 4 years.