Medical Mystery?

Hello - I am new - so here is what I've got.

-No positive lyme tests
-Live in HIGH lyme area
-Fatigue, headaches, migraines, unbearable joint pain, tmj
- Had a migraine 4 weeks ago that lasted 4 days, on the 5th woke up with vice/pressure feeling on right frontal lobe and pitosis (unable to open) of right eye
-Went to PCP, was sent to ER on suspicion of Lyme
-Had CT, LP, and blood work, given morphine for migraine, palsy spread entire right side of face and crossed midline, sent home on doxy
-Saw ID doc, was sent to Wills Eye ER on suspicion of brain aneurism, had MRI done, came up clean
-PCP started midline and rocepherin 2g daily + weekly B-12 injections
- Had midline changed to PICC, saw Neurologist, was referred to HUP(University of Penn) to see a Neuro ophthalmologist due to pitosis of r eye and no bilateral up gaze and tracking issues
-Day after HERX = worst physical pain of my life, sore throat, fever, fainting, low BP (90/44), severe joint pains
-Saw Neruo Ophthalmologist ( who does not believe in chronic lyme or false negatives) I was immediately admitted over presumed "mystery illness" had EMG, Nerve conduction test, another LP (30 cc's) chest x-ray, full spinal and head MRI, I was continued to be treated for LYME, in hospital, stayed 5 days, saw 13 docs/residents/med students. ID team, neurologists. Baffled. Discharge diag was LYME and bilateral facial palsy (still unresolved)
-Approved for another month of IV (thank god!)
- Have not had a headache or migraine since starting IV a month ago, NO joint pain in 3 days (longest stretch in 2 years)

Saw neuro again, recommending ocular OT to help with tracking, I wear a patch over r eye and still have facial palsy........

House me!

Hi Krn!
Welcome to our group!! I'm so sorry to hear all that you have been through - but you've come to a great place to learn about what you have!

I would second Summer3's suggestion about getting to a Lyme Literate Medical Doctor (LLMD) though. ID docs believe Lyme in hard to get and easy to treat, and that there is no such thing as chronic Lyme - which is really ironic since they help create so many cases of it by not treating long enough!

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."

You can also email our long time member, Dan's Mother at:phassan@optonline.net

You can also email Stephanie at: stephanie@turnthecorner.org 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) doctor. 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 beneficial 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 relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!!

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!

Usually people will go from a PICC to oral treatment of some sort, whether it's abx or naturals. As you read in Burrascano's paper, it takes more than just a few weeks on abx once symptoms start to show up and it sounds like your symptoms are fairly severe. Although if you are relying on Infectious Disease docs, you aren't likely to get more treatment.

The LLMD's don't often accept insurance since it's the insurance co's that report them for treating Lyme in a way that will actually help - high dose, long term abx. Many LLMD's have either been run out or have had their license suspended or revoked over this. Most offices will help you submit the claim to your insurance though from what I understand. That's also the reason for the expense - it keeps those that would go just to be able to turn the doc in for the type of treatment he is using away a little bit more - who would spend that kind of money just for that?

You should be sure that you are detoxing - we have good instructions in the "New to Lyme?" thread, as that will help your body heal. These bacteria release toxins as they die, and it's those toxins that drive our symptoms, so the better you are able to detox, the better you will heal and the less severe your symptoms will be.

Keep on reading about these infections! Knowledge is power here!