Anxiety over neurologist appointment.

As I've previously posted, I have my first appointment with an LLMD here in NJ on January 3rd, but before that, I have a standing appointment to see a neurologist on December 20th.

This neurologist appointment has me feeling anxious, nervous, tense....the whole nine. My wife is convinced that I have Lyme and that this appointment will prove to be a waste of time. I just can't shake this feeling that I have something other than Lyme going on. I think I just keep hearing the words of the ID doctor saying so confidently "you don't have Lyme disease," while pointing at the second Labcorp test which was negative just a couple of months after a positive Labcorp test.

Also, I don't know if it's just ignorance to facts on my part, but I often think that if I really was bitten in July and treated, even if not aggressively enough at the time, for a little over a month (beginning about one month after suspected bite date) and then just a month of no abx until this current round of higher dosage doxy... shouldn't I be seeing some improvement after three weeks? I'm on 400mg of doxy a day, and after three weeks I'm still having headaches, sunburn-like feeling on my shins, forearms, and shoulders, crampy/sore legs, pain in my right knee and left ankle....electric shock feelings in my head and on various parts of my body...granted, not everything on that list is constant, but the crampy/sore legs IS constant, and so is the sunburn-like skin sensations.

I'm just freaking out at the thought of the neurologist finding a tumor. I did have a normal CT scan and MRI of my brain about 5 years ago when I had a bad sinus infection, but I still can't help worrying. Anyone else been in this situation?

Sorry for the whining....just very stressed right now.

It is normal to be worried and with lyme, everything and I mean everything is excerbated.  I too saw a neurologist when trying to find out what I had.  He unfortunately did not have a clue when it came to lyme and thought I probably had MS although it didn't look like it.  I was like a lunatic and this caused me more harm.  The worst thing you can do with lyme though is stress out.  Easy to say I know.  But if indeed you do have lyme, it will take much more than a few weeks of antibiotic treatment to get well.  Although it is hard to be patient, lyme really does require patience along with strength and positive thinking. 

The best advice though is research, research, research so you are prepared with questions to their answers and answers to their questions.  I hope you find a neurologist who has an open mind. 

Keep us informed and good luck. 

 

BodyJar,

I was going to tell you to try not to worry, but that would be like calling the kettle black. I so know what you mean about not being able to shake the worry. I am the same way, only my fear is of MS and I have a positive lyme test!!!! ha ha I think it's called "health anxiety".

Anyhow, I've been reading your posts and I for one, feel pretty darn confident that what you have here is....Lyme Disease!!! I think it is good that you are seeing a neuro because we all need to be diligent with our health, but try not to sorry and stress too much. I have an MRI on my brain next Monday and an appt for results on Jan 11. I too am having a lot of anxiety over this. (If that all comes back in the clear, then I am totally in the clear for MS).

Anyhow, hopefully after our neuro appts we can calm down and focus on our healing from lyme knowing that that is our ailment and NOTHING ELSE!!!!

Like the previous poster said, lyme increases our anxiety and for me, I worry about my health which I NEVER did before all my symptoms started. Now, I notice every single little twitch, etc.... Thankfully now though, I don't freak out nearly as much as I used to! Thank you God and the people from this forum who help me calm down my fears!

Like Yazzer said, anyone with Lyme Disease (especially if they have the co-infections as well) that looks long enough and hard enough will find that they have what ever their "worst nightmare" is. That's the thing with Lyme, there's a reason that it's called the "New Great Imitator" since syphilis was known as the "Great Imitator". Lyme alone mimics over 300 other conditions/diseases!! Here is a link to what one person has compiled as the 300 other conditions: lymebook.com/blog/testing-diagnosis/misdiagnosed-diagnosis-mimics-great-imitator/

This person of course adds in what they believe will rid us of Lyme, but please remember, there are NO quick fixes with these very complex infections!

Another thing is - no, in three weeks you may not have even reached a point where enough of the active spirochetes have been exposed to the abx in your blood to have made even a dent in your infection. Time for science! LOL! The bacteria can move between three different forms;
*Spirochete form - this is the active form that can be found in the blood and killed with abx.
*Cyst form - these little buggars can actually "cloak" themselves, making them invisible to the immune system, allowing them to avoid any attacks.
*Cell Wall Deficient form - I believe this is the form that lives in biofilms, a nasty mix of things that actually create a safe 'community' where bacteria and other non-goodies can thrive and stay safe from all attacks as well.

So in order to make a real difference in your bacteria loads, you have to be on a strong enough dose of abx for a long enough time to catch the bacteria in the blood stream. Unfortunately these bacteria don't show up in the blood as often as other bacteria. Most bacteria repeat their life cycle in 24 hours or less - B.burgdorferi (the infecting bacteria of Lyme Disease) life cycle is actually more like 2 - 3 weeks.

As for your anxiety over the Neuro's appt, why not call and find out if they are Lyme literate? If s/he is, then they will be aware of the possibility that you may have Lyme and won't just automatically brush the possibility aside. If they aren't Lyme literate, then they won't even consider the possibility that you could have (and from your symptoms it sounds like you do have) Lyme Disease, so they will, of course go looking for another cause for your symptoms - although that doesn't seem like a good thing when a doctor refuses to even consider that you have something even though your symptoms all point to that.

Actually, needing peace about our situations is pretty universal, Carrie. We just each have our own things that we have to come to terms with and find the peace that is there for us.

I hope you will let us know what those test results are when you do get them!!