Recently diagnosed by specialist; few questions & pain management help?

New here. I'm Kade. 25 year old female. I recently saw a "lyme's specialist" whom confirmed this is Lyme and that it is in my brain [ as shown by brain mri. in the frontal lobe ]. He put me on doxy and cefdiner. I'm also on 900 mg of gabapentin a day. [ the lyme's titer was positive with 4.10. western blot was negative. ]

My symptoms;
pain in neck/back mostly, muscle spasms. Legs are weak & feel like they're giving out. numbness in right arm. blurry vision. trouble finding the right word/stuttering. trouble concentrating, trouble with memory. eyes constantly feel like they're darting around rather than focusing on one object. restless leg sensations when sitting/standing. constant fatigue. nausea. general weakness everywhere. dizziness. lightheaded. feeling like i may fall over. Feel like the room is spinning. every muscle in my body feels painful.. everything hurts including my eyes and tips of my toes. feeling "out of it/disorientated". extreme pressure at the base of the skull, fogginess in the head, buzzing.

I've been on the antibiotics about 5 days now. I know that I'm expected to feel worse before I feel better, however, my neurological symptoms are feeling ten times worse. I'm a photographer, and today everytime I moved around, i literally felt like I was falling over on the client, [ and yes i lost my balance multiple times during this feeling, ]

I'm new to this, so I expected mostly the pain to be worse, not the other symptoms. Should I be concerned, or should I just tough it out and wait and see? I just want to make sure it's normal. aside from the above example, my disorentation is a lot worse, blurry vision, burning in my arms, it's extremely painful to even lift a bag of groceries, my depth perception is HORRIBLE especially when driving.. it's scary.. and i'm feeling really unsafe to drive.

At what point, does the "herx" feeling stop?


My appt with the doctor was so brief, I didn't have a lotof time to ask questions. What do you do for pain management? I've been taking extra strength tylenol, but it doesn't help. i was told to "check in" in a month with the dr, [ he works at a clinic ]. Should i be seeing any other doctors in the meantime?

My ANA screen came back positive, with a titer of 1:160 speckled. My RF was also high.. so the last doctor i saw before the specialist referred me to a rheumy whom I can't get in to see until April. However, the specialist told me this rheumy does not "belive" lymes.


Since the dr gave me such little information, I'm just confused. Since it's in my brain, is it still Stage 3 Lyme? Or is it a different type?
He did say it would be 3-4 years or longer before I feel "much better."

I did. I just wasn't sure if my symptoms could be a reaction or if they are herxing.. I expected to have more pain or more fatigue.. but not for the neuro issues to get worse. i'm a single mother, so while these symptoms are scary enough to begin with, the fact they're worsening is freaking me out.
I went through the symptoms list.. and added these in to my symptoms.. these are also the issues that are worsening;
Abrupt/Unpredictable mood swings, anxiety/fear, irritability, new phobias/fears, Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines,, increased appetite, depth perception issues, impaired coordination, Distances (difficulty judging when driving; when putting things down on surfaces), blurred vision, eye pain, hearing changes[needing to turn up or down tv frequently ], tremors, muscle twitches, horrible short term memory, losing track in tasks, using the wrong word, Feeling too disoriented to drive, sensitivity to heat/sun, cold feet, dizziness. lightheaded. feeling like i may fall over. Feel like the room is spinning
the pain is worse obviously.. it almost feels like i can't walk

It's getting too scary for me to drive.. I feel like I shouldn't be. ;/

Thank you for your help!

Thanks. How long does a "herx" usually last? ;/ I'm sure it's different for everyone, but ugh. This stinks. The pain is getting a bit more awful too. I stood up to walk to the kitchen and the pain was so intense in my legs. ;/

Is there a medication that helps with the pain / immflamation/ etc? The dr just gave me the two antibiotics, told me to take fiber pills with the abx, and recommended a supplement.

I'm assuming it's located in the supplement/vitamin section?

That makes sense. The dr i saw recommended a supplement that had 3 major things in it.. can't recall off the top of my head.. but it coq10 with 2 others. tried to find it locally, no oluck.

Thank you very much! I'm seeing a new primary Tuesday as the past 2 I saw did not believe anything was going on with me. ;/

Yeah, the first doctor said "oh it's just muscle spasms. go to pt."

second doctor said "oh you'll be fine a few weeks. take some tylenol and do some aerobic exercises."

so, i see this third dr for the first time Tuesday. ;/

OH my goodness!!! The Neuro I saw did tell me he "had no idea what was going on." But once I asked if he would refer me to a Lyme's Specialist, he agreed. I called the specialist today to confirm everything. The nurse was nice about it. I asked her about pain management, and she told me "ibuprofen." ;/ Were your ANA numbers high? Well rather the ANA titer and RF?

Peeper said...
I drove tonight and scared the crap out of myself. Like I say below I am 35 days in on Doxy 100mg 2x/day. I have not seen a Lyme specialists, something is missing, one doctor thinks it is just anxiety. It isn't. It is a sense of off balance, me moving slower than what I am thinking, feeling detached. I had a head CT normal. I think an MRI would see more. This is 6 months of this (since August), started meds in Jan. I have some really good days and then really bad. I feel for you, it feels like an outer body experience and I doubt my once (not so long ago) healthy mind and body! I am looking for an LLMD right now to try to troubleshoot.

Here is my post from another thread:his was my post:

Hi There,

I am told I have acute Lyme by 2 doctors, not LLMDs. This past fall I had 2 episodes, one) a reaction to allergy testing (30 pricks) that led me to the E room for dizziness and two) several reactions to chemicals being used at the Museum I work at. For Both I became dizzy, anxious, could not stand and my right hand went numb for at least 1 episode. (4 since then) Before this not a single symptom.

My Doc said it was toxicity. Blood showed low red blood cell count anemia (iron fine), severe inflammation, low D. Decided to do Lyme test. 2 markers for IMG Jan 2012. 60 days 100mg doxy 2x day.

I am 35 days in to Doxy, the dizziness is somewhat better. I am doubting this is just Lyme. I can't exercise, my stamina is shot and I am getting anxiety attacks that last all day. I am always dizzy or "heavy headed" or heavy neck pain every morning. I take a 1/2 of a .5 lorazopam (bare minimum) to help me take the Doxy. Taking other supplements make me sick, even probiotics.

My Docs are not knowledgeable on secondary infections. Lyme Docs in Mass? Or is this all par for the course.

Is dizzy/equilibrium common to Lymes? or is this something else......

Thanks so Much!

Peeper

Well, I personally think that it is possible to just be Lymes. But maybe the dr should add in another antibiotic with it or change the antibiotic? And yes, dizziness/lightheadness/loss of balance/etc is all common to Lymes..

There is a lyme's specialist at General Mass in Boston!

Ah ok! Well, my appointment with the Rheumy isn't until April. So hopefully he will treat me according to the Lyme's guidelines. ;/

Kadedoll,
Unless that Rhuemy is Lyme literate, I'm afraid you will only be chasing your own tail, so to speak. You really need to seek out a Lyme Literate Medical Doctor (LLMD) that follows the ILADS standards of treatment in order to get the proper treatment, unless you wish to use natural methods to heal from these infections.

As for the pain meds - you could easily need a prescription strength pain killer. Ibuprofen and tylenol couldn't touch my pain until I had gotten through a good deal of treatment. In clinical trails, they have determined that the pain that some of the Lyme patients are in is comparable to post-op patients, and they sure don't hold out on the pain meds there!!

The other thing I would highly suggest is that you read through our "New to Lyme?" thread and start using the detox methods that are in the second thread and start about 1/2 way through the post. Many of us here use these methods -Epsom Salt/peroxide baths, dry skin brushing and drinking lots of water, preferably with lemon in it - and have found them to be a great benefit in reducing the severity and/or the frequency of our symptoms and to help get through those dreaded herxes!

Well, if you go back. i was diagnosed with "depression" when i was 14, then ocd & panic disorder. so i guess that could be related? I've always had issues with slight arthritis and joint pain in my ankles. I've always had irritability and etc. The bad short term memory started a few years back. I've noticed increased fatigue on and off throughout the years.. and was diagnosed with ADD a few months ago. But overall, the real pain and neuro symptoms/etc started about 2 and half months ago. Things progroessed horribly fast and the symptoms are very intense.

since then, i've seen a new primary whom told me if i have chronic lymes i'll never feel better.. especially if 3 months of antibiotics don't help me. [ wrong information clearly ].. i've been accepted as a patient to a LLMD and lyme program 2 hours ago at General Mass in Boston .. so hopefully taht's a start.