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1067297 tn?1255034164

Desperate and depressed

Newbie here and wanting to find out some answers. Here are my symptoms for the most part...going to the nuro doc the 13th to confirm i have Lymes Disease. He thinks maybe i do.

confusion, brain swelling (left ventrical), extreme fatigue, fibro and chronic fatigue syndrome was diagnosed, SED rate of 25, negative results on my nuclear brain scan (free of tumors and blockages), low grade fevers, lyme ab igm .96,  memory & concentration, pain and last but not least some odd joint swelling in my right ankle. Vitamin B-12 was 426. I have had chronic sinus infections also, also had at least 2 bouts with viral meningitis. My Lyme AB total was .91. Saying "equivocal". not sure what that means...

I dont know what else to do. I am extremely depressed, my boyfriend left me. I am thought of as some self absorbed complainer. I worked my whole life in social services to end up like this? I have gone to a doctor every month for a year over this (general prac) and they didnt know what to do. To say i am pissed off is an understatement. What else should i do or know before i go into this Nuro docs office?

10 Responses
1067297 tn?1255034164
Also i forgot to mention, i have had for well over a year and a half a whooshing sound in my left ear. It has not gone away.
Avatar universal
Equivocal means maybe yes, and maybe no.

Your symptoms sound to me like they could well be Lyme ... but I'm NOT medically trained, just a Lyme patient.

I'd suggest you keep copies of ALL your medical test results, starting with the dr you just saw and going forward.  They will be useful, believe me.

See the neurologist, but if s/he says you don't have Lyme, ask why that conclusion.  Take notes of what the dr says -- if you can, either during or more likely after the appointment.  [I always try to but fail.]  

And don't be discouraged if the neurologist tells you you don't have Lyme but s/he has no other diagnosis.  Neurologists are usually pretty hardcore against the idea of Lyme, but you might get lucky.

For now, be glad that you have started on the journey to find out what's wrong and to get treatment.  THAT is a very big and very necessary first step!

It's easy for Lyme to take over your life ... it happens to many if not most of us.  Don't beat yourself up, just do the best you can and know that your body is struggling to get well.  Be kind to yourself -- you and your body are not enemies -- it's the 'bugs'.

There is definitely a psychological component to Lyme, many of us go through bad times that way.  Anxiety and depression come and go.  Be sure to talk to your dr about that aspect of it, or if s/he won't listen, find someone who will at a clinic or somewhere.  You need and deserve the support.

Let us know what happens at the neuro's office, ok?
1067297 tn?1255034164
I cant do much since i have no insurance and no money for any meds. If i had kids in Illinois i would get free health care...but i dont.
428506 tn?1296560999
I ditto JackieCalifonia's assessment of neurologists.  I saw 4 neuros in 2008, none could diagnosis me with anything and all strongly denied even the possibility that I could have Lyme.  They put me on nerve pain medication and sent me for a ton of tests, including several MRIs and a lumbar puncture, all of which would be prohibitive without insurance.  

I do think it is important to rule out other conditions, including neurological disorders, to confirm Lyme in cases where the Lyme tests are all negative.  But if you have positive tests, then maybe you can move ahead.

The fact that you have systemic systems (so not just your nervous system is affected), is characteristic of Lyme, though you should probably get lupus ruled out, too.  I'm sure you know that no one can diagnosis you online, and I'm just another patient dealing with this.

Lyme does do battle with your emotions, big time.  The stress of not being diagnosed is enormous.  The fact that Lyme is a controversial disease that is difficult to test and diagnose, with strongly polarized views on treatment, adds to that stress.  For me, Lyme impaired my cognitive function, so to make matters worse I was trying to navigate the situation through mental thick pea soup.  And it's lonely being sick.  I had even very close friends put up walls and shut me out.  When I finally learned that I had Lyme, I was beyond angry, as I wastes so much time seeing the wrong doctors for the wrong thing, and taking the wrong medication.

Things you should know:  If your doc does dx Lyme, then you need to know about treatment options.  The good news is that Lyme can be treated with antibiotics, of which several varieties are not that expensive.  The bad news is that depending on your stage of illness, you may need to take them for a long time, and you may feel worse before you get better ("Herxheimer" reaction).  Check out the ILADS site, it has a lot of info about treatment.  

If you do not get a dx of Lyme from the neuro, like JackieCalifornia said, that DOES NOT MEAN THAT YOU DON'T HAVE IT.  Sorry for the caps, but yeah, I feel strongly about that point.  You may need to seek a so-called "Lyme literate" physician, or "LLMD."  This is what I did.  If/as you learn more about the controversies surrounding Lyme, you'll learn that only certain docs will diagnose/treat difficult cases.  Again, the ILADS site has a lot of good info.

Keep us posted!
Avatar universal
My experience with neuro's is similar to what wonko described.  I saw 6.  Despite being barely able to walk at the time none were able to diagnose me since my tests were normal.  So instead I got  diagnoses like FMS, CFS, anxiety and my favorite....somatoform disorder!  Not one them knew anything about lyme.  So don't be surprised if you get the "you don't have lyme" comment.  Don't give up.  You may or may not have it.
1067297 tn?1255034164
WOW, its really shocking that do not have some sorta test to see if people would hae Lymes Disease. I am beyond aggrivated to be honest.
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