Newly diagnosed and somewhat skeptical...

I will try to be as comprehensive as possible, but so much has happened in 3 weeks that it's sometimes difficult to keep things in proper sequence.

3 weeks ago, on a Sunday morning, I woke up numb everywhere, even my tongue. Cold water on any part of me felt (and still feels) awful, like a dry ice burn. Walking was weird but still doable. I made it through the work week, but I was so spent by day's end. I'd get in the door and get into bed - very uncharacteristic. I then got through the weekend but noticed I was stumbling more and more and that I really could not feel the floor under my feet. I could feel pressure, but nothing else. You could use your fingernails to pinch me hard at any given spot on my body and I COULD NOT feel it. It was surreal.

Went to work on Monday. I went to my first patient's home (I'm a home health PTA - oh, the irony) and nearly fell into my patient's arms as she opened the door. It scared and embarrassed me terribly. I left her house and went straight to the ER.


After triage and some evaluations, I was admitted to the hospital. Though I'd been by my PCP for blood pressure issues, I was shocked to learn that my bp was 189/127 and my heart rate was 118bpm. One of the first things the ER doctor suspected was Lyme. It is rampant where I live (West Virginia). Ultimately, I was admitted to the hospital.

My gait became very strange because I couldn't feel the floor. I was "scissoring" as I walked, almost like a supermodel on a runway. My body ached pretty badly and I felt weaker every day. After 6 days and many, many tests - CT scan, 2 MRI's (one for the brain, one for cervical and thoracic spine), nerve conduction test, electromyography, tons of blood work and a lumbar puncture, I was told I definitely showed positive for Lyme - both acute and chronic. The lp saw a significant increase of protein. Also worthy of notice: I had a "raging" urinary tract infection but had absolutely NO symptoms. The infectious diseases doctor ordered a picc line and 28 days of Rocephin. After the confirmed Lyme diagnosis and the lumbar puncture, the neurologist came to see me and said, "You have Lyme, but your story is not over yet." He mentioned that my CFS showed a high level of protein. But then he basically deferred my care to the infectious diseases doctor, saying he'd see me again in his office in mid April. Huh?

So I'm home now, but my gait is much, much worse. I cannot walk safely alone and must hold onto someone or something as I go. Stairs are flipping scary. And I wear out quickly. During my recent follow up with the infectious diseases doctor, she became alarmed when I told her of my difficulty walking. She said by no means should I be getting worse and that something else is going on. She urged me to get an appointment with the neurologist asap. The soonest I could get them to see me is 3/27, though I described my situation with calm but appropriate urgency.

Of course, I'm burning up the internet and tapping the brains of my colleagues trying to figure out what else besides Lyme could be wrong. And I think I know: Chronic Inflammatory Demyelinating Polyneuropathy, which is like the kissing cousin to my first suspicion of Guillian-Barre' Syndrome. In fact, I asked the hospital if they had a plasmapheresis machine (which they do).

Has anyone been diagnosed with CIDP in conjunction with or independently from Lyme? If so, could you share your experience with me?

Also, my peripheral neuropathy which can only be described as numbness, has now evolved (devolved??) into a pins and needles feeling. Is this an improvement over numbness? Are the nerves "waking up"? Or is this an advancement of whatever is wrong with me?

Thank you so much for suffering this long, long post....I look forward to any response at all!

Like opugirl said, you need to find a LLMD right away. Fo to the "new to lyme" thread on here. Also, you can make a new post saying "Need a LLMD in _(state you live in)___". Most people travel to see a LLMD and a lot of the cost is out of pocket, but they truly are the only drs. that know how to effectively treat it. Ironically, the Infectious Disease Drs. do not.

Also, like opugirl mentioned, initial abx. treatment can worsen the symptoms because of the herxheimer reaction. When the bacteria dies-off it releases toxins into the body. You need to detox to get those out.

I'm sorry that you are so ill. I had a very sudden onset of symptoms - pain, fatigue, nausea and vomiting, neurological symptoms, etc. and it was extremely frightening. Just take it one step at a time and try to rest as much as you can. And find a LLMD as soon as possible.

Thank you all so much for the replies and information.

I am a bit upset at the moment because my ID doctor, who clearly understands I am not improving, has decided to move my appointment from next week to SIX WEEKS from now. When I asked why this was happening, the secretary simply said the doctor has so many IV patients right now. Not acceptable. By the time I see her in 6 weeks, my IV Rocephin will have been finished for 4 weeks. Yeesh.

I have decided to go back to the hospital today with the hope of being admitted. The neurologist will simply have to see me. As for the ID doctor, well....my plan is to replace her with an LLMD.

As an incredulous aside, I am blown away at how quickly good health can be taken away. 4 weeks ago, I was fine. FINE! I am so anxious to get back to life as I knew it.....

Thanks again to all....I will update soon.
-Amy

A quick update: I went to the ER yesterday with the hope of being admitted in order to be seen by my neurologist instead of waiting 10 more days until my app't. Well, I didn't get admitted but the ER doc was able to get me a 10am appt today with my neuro! This is much better than being admitted to the hosp, in my opinion....

Mystery Illness and Violets, I appreciate and empathize with your stories so much. And I value your candor and sensitivity as well. It was definitely not lost on me that my care so far has been a bit of an anomaly from what the majority of folks on this forum have faced. During my 6 day hospital stay my husband and I would sometimes just marvel at the swift care I was given. It wasn't until I got home and started reading Lyme stories on the internet that I realized just how much my experience (so far) has been shockingly different from the "norm".

I will update after my appointment, folks......thanks again for all the information and sincere concern...

Amy

Amyamy- so sorry that you are dealing with this. First off I agree that the care you were given in the ER are most definitely commendable. Secondly, there are several great articles out their but this one might benefit you!

http://www.nydailynews.com/sports/baseball/mets/madden-tom-nearing-terrific-day-mets-legend-winning-battle-lyme-disease-article-1.1289293

I hate to undermined your neuro but mine had me take so many tests, like many of us have had to do, and they showed nothing. The tests he ran on me are some of the same ones you have had done at the ER. They deserve a card/flowers etc from our forum! Maybe the word would spread.

I was bit in Feyettville WV (multiple times). My gait is uneven, I have severe neurological symptoms and neuralysis on my left side. I walk like a drunk. I cannot do stairs period!

I understand trying to do everything possible to find out what is wrong! I have literally had MRIs, CAT scans, exploratory surgeries, lab work after lab work- I have met my insurance deductible by March since I began searching 5+ years ago.

I had a severe bout in 2008 where I had a 102 degree + temp, needed a blood transfusion and was unable to move. I was hospitalized and given every antibiotic under the sun. They had no clue what was going on. They finally called in an IDD after 4-5 days and I had never even heard of that type of doc before. I was scared. That's the only part of the stay I remember. They ran numerous tests but never a Lyme test. I was just diagnosed a few months ago when my neuro sign were so bad that I knew I needed to continue seeking an answer. None of this is fair to any of us and seems surreal.

Good luck!

It is wonderful that this neurologist wants to try to help you and do more testing. The testing is worthwhile to rule out other conditions, but be aware that most drs. will say that the lyme tests are negative when they are not. In my opinion, you were told you had a positive test by an ID dr. (whom usually deny LD), so that's a definite positive. A 2/3 acute positive is a positive, plain and simple. As I mentioned before, most neurologist will try to talk you into another diagnosis other than LD. I have no idea why, other than being trained to basically not believe in LD.

For example, I was diagnosed with a condition called POTS by a neuro. Although I do have POTS, it is a symptom of LD. That was not a true diagnosis and trying to treat that condition/those symptoms did absolutely nothing to help me get better. Now, treating the lyme, I'm improving.

That being said, I see no harm in having every test under the sun done if the neurologist will order it, you can tolerate it, and insurance will pay for it. I had every test anyone could probably have and everything came back normal except for the tilt test showing POTS (and my lyme western blot). It's always good to rule things out, but I would recommend pursuing finding a LLMD also. Again, I don't want to upset or scare you, but I want to save you the LONG, painful journey that most of us experienced.

Also, get a copy of your lyme test results if you don't have them already! Find out what kind of test it was, what the specific results were, etc. The most accurate test for lyme is the IGENIX western blot; that's what most LLMDs use.