I thought I had it beat!

I am new to the board, but not new to lyme disease.

I am a 24 year old female who first began with neurological symptoms (including facial pain, double vision, peripheral neuropathy, and decreased cognitive function) last April. I finally got ahold of a Lyme literate Infectious Disease doctor last October. I was treated with IV Rocephin for 6 weeks and then oral antibiotics for 4 months. Two months before the end of my treatment I felt AMAZING! Just like my old self, and I have continued to feel good since!

Alas, about a month ago I noticed some hearing loss in my left ear and started experiencing intermittent (albeit intense) ringing in the same ear. I have had problems with fluid building up in my ears after a cold in the past and thought it might be related so I went to see my ENT. After a hearing test he said it was one of two things, either I was having some problem with the nerve or there was fluid in my inner ear (a condition he called hydrops). Believing the latter to be true he prescribed me a diuretic and instructed me to keep to a low sodium diet.

I have had no change in my hearing loss (the ringing has subsided somewhat, but returns when I get tired out or am out in the heat) after 1 week of the prescribed treatment. However, I am now experiencing fatigue, which I am hoping is related to my sudden diet change (I droped 5-7 lbs quick from the diuretic).

All of this just seems too familiar. I don't want to go back to my ENT and have him start rooting around for another cause of the hearing loss and end up racking up more doctors visits and tests just to have them be inconclusive because this turns out to be lyme related.

So what are your thoughts? Did anyone experience full recovery just to end up with new symptoms a few months later? Am I just developing inner ear problems in addition to the Lyme? Or should I revisit the idea of an MS diagnosis (the previous doctors' favorite diagnosis, the old "come back in a year and we'll do another MRI")?

Any insight would be immensely appreciated! I just started reading this board today, but everyone seems so supportive, knowlegable, and articulate. I am very excited I found it!

Post Edited (apeter) : 5/17/2010 5:02:43 PM (GMT-6)

Thanks CajunGrl!

I have not yet mentioned it to my LLMD. She was wonderful with getting me treated, but I know from other patients that she seems to frown upon the idea of Chronic Lyme. I guess I am mostly just worried about contacting ANY other doctor and getting caught up in tons of (expensive/stressful) visits and tests again.

Notes to add to my above description: I did NOT experience any herxing during my treatment, just a slow, steady relief of symptoms.

GWB,

You're right about my doc. She's probably not a true LLMD. She diagnosed me with Lyme based on my western blot (three bands on the IgG, one of the IgM bands), my progression of multifocal symptoms that jumped around, and slight-but-noticeable bell's palsy. I was about to have my lab work sent to IGenex when I got my diagnosis. My western blot had been ordered by an infectious disease doctor I saw at Piedmont Hospital in Atlanta who refused to diagnose (i.e. told me to see a shrink). I was mostly just grateful to get a diagnosis and get treated. After months of bizarre neurological symptoms, with my pain increasing and my cognitive function worsening everyday, by the time I saw her I could barely string a sentence together.

While I do not remember being bit by a tick or having a bulls eye rash, I was out hiking two months before my first neurological symptom and about two weeks after the hiking trip I had a mysterious fever and achey-ness for a week.

I understand your skepticism of my ID, but at the time I took my diagnosis and IV abx treatment and ran. She seemed confident in her diagnosis and I know she has treated a lot of lyme patients in the area. I felt lucky that I had found someone close(ish) to home, that I didn't need to go further out of state.

So is that it then? I need to find a true LLMD and make sure I ever had Lyme?

I know this is whiney, but the idea of going on another doctor quest makes me want to give up... I mean, the ringing and the hearing loss isn't that bad...

achievinggrace,

That's great advice! Do you think I would herx with an herbal remedy if I didn't on IV and oral abx? I am currently on Dr. Burrascano's daily supplement regimen and have been since my dx. Do you recommend any herbal protocols?

Each and every herb and/or abx given for Lyme can trigger different responses in different individuals. And the response may be different in the same person for the same abx/herb given at two different times. That is the nature of Lyme...changeable, very changeable. That's how it eludes the immune system, and how it can be missed so easily on tests.

tease root and japaneese knotweed wil cause die off. just a dropper of each twice a day.

apeter,

I was bit by a tick in 2003, had bulls-eye rash, classic symptoms, however didn't get treated until 2005 (abx route). In 2008 relapsed (again abx route). April 2010 relapsed again (this time am following Dr. J's protocol--he's in Kansas). It is not the abx route.

I decided to go the non abx route this time because of my husband's amazing journey to better health on Dr. J's protocol. GWB is sharing "his Lyme Disease journey" on Healing Well and if you're interested in reading about it here is the link (it is 3 pages):

https://www.healingwell.com/community/default.aspx?f=30&p=1&m=1690780

May God lead you to the right healing path for you.