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Just Diagnosed with Neurological Lyme Disease?

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Posted 9/11/2013 1:15 AM (GMT 0)

It started August 13th with a throat infection. Seen Dr. on Aug 19th and was told I had the beginning of perio tonsil abscess. I was given 875mg antibiotics and 40 mg of prednisone. By Aug 23 I woke up and every 15 minutes my hearing would go. Went to Dr. and he prescribed nasal spray and Sudafed for pressure in sinuses. By 5pm I lost all my hearing (not that I was aware that this happened). I lost all my balance and by the Aug 25th landed in ER where they did a CAT scan and diagnosed me with acute sinusitis. The next day I went to the ENT and he diagnosed me with Labrinthitis, sensorineuro hearing loss, and vertigo. He put me on 60mg prednisone and stopped all other meds because he said my throat was clear and my ear looked fine as well. 5 days later I began what was a slight slur in my words.  By Sept 2nd I had a full blown stutter. My ENT sent me to the ER again. Spent 3 days in the hospital Sept 4th-6th and was released with no diagnosis.

Yesterday I was finally given lab results and they are as follows: IGM 41,39,23 present

                                                                                              IGG 41 present

                                                                                               WG IGM Positive

I seen infectious disease Dr. and he has me on 100mg doxycycline for 21 days. If I still stutter by Monday then they will give me an IV. Today I seen the Neurologist and he seemed skeptical because I never had a rash, never found a bite, or any lump. He is sending me for more blood work and a spinal tap. 

Has anyone seen this before? Can anyone give me info on the numbers on my test? I am tired of being sick  confused

Other symptoms I've had is numbness to left side of face, gait on left leg, clumsiness with left hand, bottom lip tingles, slight tremor, have trouble focusing and remembering. Slightly off balance but I manage.  

Post Edited (simplyfrustrated) : 9/10/2013 7:37:17 PM (GMT-6)

Posted 9/11/2013 2:59 AM (GMT 0)
Many people don't get the rash, or even remember a bite. I don't know the exact specifics of the test, but the new to Lyme page at the top(very first post)has it on there, I think.

Another thing is you should NOT take steroids with Lyme...sorry if I'm the first to tell you this, but it usually makes it worse.

I don't know(in my opinion only)that I would take the spinal tap(unless it's necessary). Lyme doesn't always show up in spinal fluid, and if they see negative on the spinal tap, that may override your blood test, and they might not treat you for it. I would take the Doxy, take the IV, and find an experienced LLMD(Lyme literate Dr)ASAP.

Others on here could probably help you find a llmd if you post need llmd in ____ . Good luck, and hang in there. :)
Posted 9/11/2013 3:14 AM (GMT 0)
Thanks Sooverthis. I had been on the steroids for 3 weeks and even though it brought back most of my hearing, I felt it was making my other symptoms worse. Will check 1st post.
Posted 9/11/2013 12:17 PM (GMT 0)
The infectious disease dr and my GP believe that I have Lyme and are treating me with 4 Dox pills a day. The Neuro Dr is the one questioning it. As for the spinal tap he is saying that if it comes out positive than I will need to be on the medication for a longer period of time than 21 days. My GP tells me that from my blood work it looks like I've had this for a while and the infectious disease dr says I just got it recently. I guess the blood work that I am doing today is more in depth testing. I feel like I am crazy in my head :/

I have all cat scans, blood work, and MRI in my possession. Will look up LLMD.
Thanks
Posted 9/11/2013 2:36 PM (GMT 0)
You need more than 21 days abx whether it's in the spinal fluid or not though. 21 days is NOT enough for even the most recent infections, and if you don't get it treated properly, you will more than likely be stuck with "left over symptoms", and/or relapse in the future.
Posted 9/11/2013 2:50 PM (GMT 0)
Agree that 21 days is not enough for abx. I was on for 21 days, and it was like pulling teeth to get more. My refill is for a measly 14 days more. I'm also doing a slew of naturopathic remedies. I have yet to feel anything more than an incremental improvement.

My diagnosis is Lyme Meningitis. I wonder if that is one in the same as Neuro Lyme. My (not very sophisticated) understanding is that the infection attacked the nervous system. My symptoms are similar to yours, along with a stiff neck and headache that never seem to go away.

My neuro was going to do the spinal tap, but after reviewing my symptoms with me she determined this to be a "textbook case" and didn't think the LP was necessary.

What I want to know is - what do you have to do to get IV abx. All of the reading I've done suggests that the IV approach is best for meningitis. It's exhausting, when you're already this exhausted, to have to keep harping at the docs to get what you believe is the best treatment. At this point I'm staying the course on my doxy and when that is done, if I don't feel at least 50% better, I'm going to "demand" to go the IV route.

I hope you start to feel better soon.
Posted 9/11/2013 2:50 PM (GMT 0)
Hi Frustrated!
Welcome to our little community!!

You most definitely will need a LLMD to help you heal! These are incredibly complex infections, not ones regular doc's are trained to heal.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html


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, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

And definitely check out the lyme drs like any field there are good ones and not so good ones! Email with any questions!

~beth
Posted 9/11/2013 7:39 PM (GMT 0)
Thanks for all the input :)

Sunny as far as the IV goes I believe they would have done it but I had already filled my prescription for dox and so he is giving me up until Monday for the stutter to go away. If it hasn't he was adamant about the IV. I too have had a slight crick in the neck for almost a week and a half. I have RA so I associated it to that. Now I know that its part of this disease. I will continue to do my research as has been recommended. Never did I think that this would be complicated. I figured I get medicine and it would all go away. I guess I was wrong.

Today my Neuro sent me for sedimentary rate west, western blot, lyme pcr, rpr, and c reactin. Lets see what those tests say.

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