SICK for 1 year LYME DISEASE?!?! HELP

[Rainbowmoonbeam]

Hello. I cross posted this in undiagnosed diseases, but after doing some research on lyme disease this sounds all too familiar.

I have been feeling extremely sick for almost two years. It started with almost flu like symptoms. I was tired, had no energy, nauseaus and very very weak, I felt like fainting when standing. (I thought I might have anemia since im vegan but all blood tests came back fine). Then I started to feel disconnected with reality. I started getting panic attacks, so I started going to psychiatrist. They put me on klonopin then celexa for helping with anxiety and slight depression. I felt slightly better but not much. I've been off them for 6 months. It's hard to remember when I had what symptoms but I've been to get MRI, cat scan, holter moniter, had blood work, EKG and been to ER many times. I've been to primary care, urgent care, er, head and neck, neurologists, cardiologists, chiropractors.  I've had horrible headaches, back pain, neck pain, nausea, dizziness, lightheadedness, muscle weakness, memory difficulty, EXTREME feeling of being out of reality, uncoordination, trouble concentrating, difficulty speaking. The dizziness seems to come from my head like inside my head is spinning. I'm the one that's moving not the room. Drs haven't been able to find anything and I'm not a hypochondriac, it's not in my head. I feel worse everyday. I am slightly aenimic but barely. I just had holter moniter and results were that i have "early beats". I can definately feel them and it's scary. My head throbs (not headache) and I feel dizzy. I get waves of extreme sick feeling almost like I have to go to er. These aren't panic symptoms it's physical, it's real. I haven't had panic attack in  at least 8 months. I can barely go anywhere I get lost, confused and feel really out of it.

ive also had an ear pluging/sometimes ringing problem. by my description the ear neck and head specialists tell me that ive had vertigo and diagnosed me with minieres (sp) disease. ive been going to a chiropractor for back pain, and neck pain. mri shows nothing, everything is "fine", same with bloodwork. My primary care dr seems to care but seems stumped, keeps sending me to specialists which take weeks and weeks to schedule. ive had muscle pain almost like growing pains in my legs and knees and in my left arm especially in elbow area. i keep going back to dr, but all these symptoms seem so different from each other, i never thought they could be related.

My friend told me about her friend who had Lyme disease and it sounds very similar to how I feel. I'm at the end of my rope I feel horrible. This Friday I'm going to get more bloodeork done to test for lyme at my primary care. Does anyone have any ideas? Anything else I should get checked? Any tests? I want to get back to normal life I feel like i never will and like no dr will ever be able to help. sigh. and i have no idea where i would have gotten bit by a tick, except i used to hike sometimes (southern california) and my grandmas dog was infested with ticks (mexico) but i never felt bite. Thank you for reading this and hopefully you can help! :-)

[JackieCalifornia]

If you scroll down to a posting here that's named 'Creepy icky feelings ...', I wrote a really long reply to the person posting the question that might give you some more details about the diagnosis and treatment aspects.  fwiw.

[JackieCalifornia]

Welcome to MedHelp/Lyme.

I am sorry to hear all that you have been through.  I don't know if you have Lyme, but your symptoms sure sound a lot like what I and others have had.  Everyone who gets Lyme is a little different, so that's not surprising.

You've been through a lot already, and I know how hard it is to keep going -- but it's what you have to do, and you are doing it.  Good for you!

I would guess that if your current MD were familiar with Lyme, s/he wouldn't have been sending you all over creation to specialists trying to guess what to do next.  (I went through more than 20 MDs before I got a diagnosis, so your journey sounds more than a little familiar.)

My suggestion:  find a Lyme specialist and get tested.  The tests you are getting from your current MD are not useless, but some tests are better than others.  So if I were in your shoes, I'd get the tests done as planned, but in the mean time, start looking for a Lyme specialist, which we often call an LLMD, which is slang for Lyme Literate MD, meaning one who really understands Lyme and the other diseases that come from the same ticks.

Here are some websites that I believe have referral functions to find an LLMD:

lymediseaseassociation [dot] org

lymenet [dot] org

chroniclymedisease [dot] com

You can also google/search something like "LLMD chicago" or "LLMD new jersey" or wherever you are located and see what you get.  

Lyme diagnosis and treatment is a new and developing field with much controversy involved, and mainstream medicine (that is, the MDs you've been seeing) are largely ignorant of Lyme.  There is frankly a war going on in the medical community between those who think Lyme is like the sniffles and those who know from experience what Lyme patients know:  it's misery.

You may not have Lyme, but if I were in your shoes, I'd want to know, and to find that out, you need to see an LLMD.  I am NOT medically trained, so this is just my own opinion, but you didn't mention any symptom I haven't heard of in connection with Lyme, and I have had most of the ones you have.

There is a website at ILADS [dot] org that you may be interested in when you are feeling well enough to deal with it ... it is the home site of the International Lyme and Associated Diseases Society [ILADS], the organization for MDs and other healthcare providers who take Lyme seriously.  It's a lot to digest, but when you feel up to it, go there and read in particular Dr Burrascano's treatment guidelines.  It's a lot to absorb, but if you're like me, the more I know, the less anxious I am about the whole situation.

There is a book (now in paperback) called 'Cure Unknown' by Pamela Weintraub, who is a science journalist/writer -- her family got Lyme and she writes brilliantly about the experience both from the scientific side and the personal side.  I highly recommend it, but if your brain is as addled as mine was, you might not be up for it yet.

Also there's a movie called 'Under Our Skin' that came out a year or so ago, but I'm not as fond of it as some people, because it is short on explanation and long on watching people twitch and feel awful.  I found it depressing and annoying, that is was so relentlessly dark, and it concerns me that someone who is where you are may be more distressed than helped by the movie.  If you google 'under our skin', the first hit has a link to a preview of the movies, which is now in DVD.  Most people here seem to like the movie; I just know that when I was at my sickest and as yet not diagnosed or treated, the movie would have really frightened me and given me an even worse feeling of hopelessness.  One of the people in the movie has severe muscle cramping that I never had, but it's distressing to watch and worry about oneself getting that way, imo.  Fair warning.

Lots of people never see a tick or get a circular red rash, no matter what mainstream medicine says.  Don't let that slow you down in getting a work up by an LLMD.  It can take a little while to get a first appointment, so go for it.  I got really good at juggling different MDs at the same time to proceed on all front, instead of going to one until we hit a dead end and then starting all over.  Enough already, you know?

You really will need an LLMD-type.  Regular MDs too often don't know about Lyme, don't know what tests to order, and don't know how to read the tests they do order.  And if you find an LLMD that seems odd, find another one.  Don't give up.  You've come this far:  keep going.

Let us know how you do, okay?  Take care.  Been where you are; a lot better now.