Anyone out there dealing with Lyme Disease or know someone who has? (Advice Needed)

[CedarAcres]

Glad to hear your husband is doing better! I just had a friend who had a positive lyme test. She has been feeling so awful and has started a month of antibiotics. My uncle had lyme for years and was finally diagnosed and took antibiotics and improved. His doctor told him that after having it so long he is expecting it to come back and possibly be chronic. A friend of ours was finally diagnosed with lyme as well and they were so ill that they lost 50 pounds and most of their muscle mass. My husbands little cousin had it when she was 5. Thankfully she got better right away when treated, but the doctor didn't even want to test her for lyme! They had the tick & she had the rash on her arm at the time. Her joints were so painful that she was refusing to walk. A friend of my father was telling him how they raise guineas now to cut down on ticks because every single person in their family has had lyme disease.

I think it's pretty scary how many people are becoming ill from it. And it also seems like many doctors don't know even basic information about it.

 

[suebee]

I know this is an old thread but thought I'd dig it up to share my story. I was bitten by a tick in 2012 and started having balance problems, like I was walking on a waterbed. I got a Lyme positive test and was put on antibiotics. Two years later I am still having severe balance problems, especially when walking across parking lots, any open spaces. It seemed to be more severe during the spring and summer so I was tested for allergies. Very mild for trees and grasses. I'm going to an Ear, Nose, Throat doctor next week to rule out any ear problems. After that I'll see a neurologist. When my chickens surround me I panic because I become off balanced and think I'll fall on them. When I'm standing in line at a store I must have a cart to hold on to. If it's a convenience store I panic. I have a hard time pivoting to leave the counter and people probably think I'm drunk. So frustrating I've put up with this for 2 years thinking it would go away. No such luck yet. I hope the other posters and their loved ones are improving.

 

[Arielle]

Lymes is common here. THe doctors treat is seriously as the long term health issues are very detrimental, and can be permanent. BOth my kids have had it and I have had it too.

Get a lymes test done again.

Treatment varies based on how long the patient has had the disease. Sometimes tratment needs to be longer much longer to be effective.

 

[Hillbilly Hen]

@suebee I hope you find out what is going on and can get it taken care of.

 

[suebee]

Thanks friends. I most likely will test positive if tested again but I just want to reach out to anyone who has a balance disorder associated with Lyme disease. I'm looking for anyone that was "cured" from this sensation like when an elevator is starting or stopping, or like I said earlier, feeling like I'm always walking on a waterbed. Trouble composing emails and knee, leg pain are other problems associated from my Lyme disease.

 

[bluesub]

You should be checked for vestibular neuritus or labryinthitis. I had an episode of vestibular neuritis 1.5 years ago and then a recurrence 1 year ago, I still have lingering balance issues. There is vestibular rehab therapy that can help with the balance. Try to find a neurotologist (a doctor who specializes in nerves relating to the ear and balance).

I'm not sure there is a cure, I will probably always have some symptoms because my vestibular nerve was damaged.

 

[suebee]

Thank you bluesub for your input. Would the ENT I'm seeing this Tuesday find that, or would I have to get an MRI?
Did you have the "walking on a waterbed" sensation also?

 

[bluesub]

There are some hearing tests and something called an ENG. It can't be diagnosed by an MRI (unless they think you have a tumor). I feel like the room is spinning all the time. I can't walk on uneven ground or it feels like a waterbed. It has made my peripheral vision very acute, it is difficult for me to drive through tunnels.

 

[Shayna]

Sorry to hear of your troubles suebee. I hope you find out news soon so you can get treated and feel better soon! In the meantime, have you considered using a cane when you walk out with the chickens? It might feel kind of silly, but it might give you some security knowing you have something to lean on when you feel off balance so you don't panic. It would be terrible if you fell and hurt yourself.

 

[suebee]

Well I went to an ear, nose, throat doctor today to rule out ear problems related to my balance issues. I do not have Vestibular Neuritus, Labryinthitis, or Mal De Debarquement Syndrome. Next stop, a neurologist.