What else can I epect from the neurological syptoms of lyme disease? And what are the treatments?

Are you seeing a LLMD? If not, please send out a request for the names of LLMDs in your area (I know there are a couple). I think you should have the urine problem checked out TODAY by any doctor that will see you! Go to ER if you must.

Hi-
Most of your symptoms sound familiar. One of the first symptoms I noticed was I dropped things - small items - often. You need a urine culture too - asap. I had a UTI that was uncommon and resistant to some antibiotics (that I didn't even know I had), and they had to treat it first. Hang in there dear

Post Edited (RTF) : 8/11/2014 11:25:58 AM (GMT-6)

So true about the over the counter meds - nothing really works. In fact, i just left a message for my Dr to see if there is anything they can prescribe to help with the joint and muscle pain and inflamation. I imagine it feels something like fibromyalgia combined with arthritis. I did change my diet to help with the inflamation, it's helping but not enough, I guess not yet.
Who gave you the Lyme tests? Seems they would have started you on antibiotics and supplements right away, regardless of the other test results since the Lyme was positive. Hope you find some relief soon

Hi LymeMommy,
Unfortunately, you should not have had a steroid shot because you have an active infection. Be sure to not get any more steroids - either by shots or any other method. I really wish doctors would get it in their head that Lyme is an actual infection.

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, ​a list of questions that you can ask any doctor that you are seeking treatment from and so much more.

If your insurance will allow, skip all the other doctors and go to the LLMD. You have a positive Lyme test - nothing else is needed, especially since you have the symptoms of Lyme as well. Seeing the other doctors, unless they are trained by ILADS (International Lyme and Associated Diseases Society), they won't recognize the symptoms of Lyme disease and will misdiagnose you, sending you on a wild goose chase looking for other possible diagnoses. Many here have gone through this and it's frustrating and maddening- especially when it means a delay in treatment!

Hang in there and keep on trying to deal with the stresses in your life, things will get better!!! You can start detoxing which should relieve some of your issues, as the bacteria die, they produce toxins, and it's the toxins that drive our symptoms.

Neuro Lyme most certainly can cause a lot of pain! You are far from alone! Do you best to not pick up your 1 yr old (Yes, I know what I'm saying) and rest as much as you can. Doing activities that increase your pain right now is very counter-productive to your healing, as stress brings down the immune system, and a lowered immune system allows infections to spread further.

You are not alone - we are here to help you find the information that you need as you go through your treatment(s).

Gabapentin helped take the edge off my initial sharp stabbing nerve pain, and helped me get some sleep. NSEDs did nothing.

LymeMommy
I am new here too and in almost the same shoes. I have two young children and was recently clinically diagnosed with Lyme. I have really bad neurological symptoms... internal vibrations, headache for days, numbness all over, but then pain in joints, pressure in left arm, numbness in face, rushes of panic, vision problems... The list goes on and keeps changing. I am normally s
omewhat healthy. I went to two ERs last week and they didnt know anything about this disease and pretty much blew me off. But I have been reading about this so much that I contacted an LLMD. I can't express to you enough that you need to do this. Even my family doctor that I love said he was going to be upfront with me that he didnt know anything about Lyme. He did put me on antibiotics which is helping my symptoms but I have to wait another two weeks to get in to be properly treated by LLMD. These are such miserable symptoms and I feel your pain. This forum is great for support. Please know you are not alone.

I finally got my WB back and it confirmed yes I have it. My PC gave me oral antibiotics, and refuses to give me anything for the pain. I have to wait to go to the pain clinic. From the neurologist mouth, its all in my head, hes never heard of anyone being in pain because of lyme disease. he is refusing to help me too. I got some of my records from them and they have not been charting everything like they are supposed too. I asked them to do a full mri, to make sure nothing else is going on. My grandfather passed in april from an aneurysm in the brain, so Im concerned with that. the hospital here is even worse than the doctors. I wish I could travel that far, but im in entirely too much pain and I get disoriented driving more than a few hours. then after I feel like Im down like a week or two. the meds aren't helping, I feel the same, and now, Im starting to get other symptoms like moodiness, anger, depression, extreme pain in not only my back but other joints, along with muscle spasms, headaches that last days.
Im gonna try to talk to my pc again, hopefully she can help me out. and send me to a different neurologist to do a full mri of my whole body to make sure there isn't any other damage anywhere else.
I know Im not crazy, but they keep telling me its impossible I cant be feeling like this or be in this much pain. I don't know what to do. Im even starting to get insomnia, and a severe feeling of hopelessness.
Im making out my will and getting my life insurance together just in case so I know if something does happen to me, my daughter will be taken care of. Her father/sperm donor don't care about her, and I refuse to let anyone that don't want her or hasn't even made an effort to be in her life to get her. That's my biggest fear. Ive even started a journal for my daughter, so she can really know me if something goes wrong. I want her to know I love her with every part of my being, Im trying to well but Im also tired of getting passed around like a hot potato. these doctors really need to start listening to us, were not making this stuff up. this is real. I want to be able to go back to work, and take care of my daughter again. Ive had to start proceedings to start SSI n SSD. Im filing for both so I can take care of me and my daughter. Im saying prayers for all of you Lymies, praying we all get the treatment we need, and can finally get on with our lives.

Is there anyone at all that could drive you to the LLMD? What about contacting a local church to see if they can help you get to your doctor appts?

You really need to see someone that has had training from ILADS -not just any random doctor, they won't know what to do to help you. Nashville is only about 2 1/2 hours from where you are if Google maps is correct- and it would be worth it for you to see someone who can really help you.

When I started seeing my LLMD, I had to drive 5 hours each way and it wiped me out completely for 2 or 3 days - couldn't do a thing & in bed all day long, then slowly I would build back up until I could make another trip the next month. It'll get easier as you begin to heal to make these trips too.

And I agree with Razzle about being concerned about your kidney health first. It may seem minor when it feels like your whole life is falling apart, but that's where you should start.

And Neurological Lyme disease can be very painful!! Just ask anyone here that has it!!

My pain was so severe my primary doc put me on OxyContin and dilaudid for breakthrough pain. Thank goodness! I was SO miserable before. I keep trying to reduce the dose, and so far that's not working. At least I don't need dilaudid most days. But then I'll have a day when I have to take it 3 or 4 times. I do worry about addiction, but I'll deal with that if I have too. If I had stayed in that pain, I'm afraid of what I might have done!

I hope you find someone to help you with your pain! I can't believe a doctor would leave you like that!