Please help! I'm 27 yrs. I've been out of work since November due to a sudden onset of vertigo, Followed by constant, severe headaches and fatigue. I've been to an ent,rheumatologist and a neurologist. I've had bloodwork,an eeg,mri of brain. cervical xrays and a balance test. I've been diagnosed with tmj, Reynolds, and arthritis in my neck.autoimmune disease such as Lupas and rheumatoid have been ruled out. the eeg showed irritability (migranes) which I've never had. I've since been on antivert (antihistamine) and migraine meds. barely an impovement. I've had aches and pains and tiredness more than the average person since high-school,but this is more extreme. I asked to have a western blot done because I strongly feel something is going on. my Dr. ordered it and the lab refused to do the WB because I had a negative titer. I don't what to do. I need to go back to work but I don't feel like I'm thinking clearly and i haven't been able to drive. I just want to sleep all day. If you know of an llmd in western ct. Or if any of this sounds familiar please respond. Thank you in advance.
Posted by Keebler (Member # 12673) on :
- samiam,
So that more can read your post and reply, here's it with some "breathing room for the eyes" - many hear cannot read solid blocks of text. -------------------
samiam writes:
Please help! I'm 27 yrs.
I've been out of work since November due to a
sudden onset of vertigo, Followed by constant, severe headaches and fatigue.
I've been to an ent,rheumatologist and a neurologist.
I've had bloodwork,an eeg,mri of brain. cervical xrays and a balance test.
I've been diagnosed with tmj, [editing in correction from below:] Raynaud's, and arthritis in my neck.autoimmune disease such as Lupas and rheumatoid have been ruled out.
the eeg showed irritability (migranes) which I've never had.
I've since been on antivert (antihistamine) and migraine meds. barely an impovement. I've had aches and pains and tiredness more than the average person since high-school,but this is more extreme.
I asked to have a western blot done because I strongly feel something is going on. my Dr. ordered it and the lab refused to do the WB because I had a negative titer. I don't what to do.
I need to go back to work but I don't feel like I'm thinking clearly and i haven't been able to drive. I just want to sleep all day.
If you know of an llmd in western ct. Or if any of this sounds familiar please respond. Thank you in advance.
(samiam from CT) -
[ 02-21-2012, 06:45 PM: Message edited by: Keebler ]
Posted by dmc (Member # 5102) on :
sent a pm w/info & some names
Posted by Summer3 (Member # 35286) on :
I don't know the area of CT in terms of LLMD's, but you may want to post in the seeking forum. I think that it would be a really good idea for you to go to a LLMD. I hope you can get in touch with one soon. Your symptoms are a lot like mine.
I had the same problem with a doctor refusing to run a western blot because I had 2 negative ELISA's. When I got to a LLMD I tested positive and had a very low CD57. I was told I had late stage lyme and coinfections as well.
Right before I went to a LLMD, I was about to give up with doctors altogether. I had already let things slide for years like joint pain and extreme fatigue. I avoided doctors and when I finally did go after I got severely ill with a 105 fever, they insinuated that I was making things up because my standard blood work came back normal.
Posted by lymeinhell (Member # 4622) on :
Hi Samiam!
So sorry you're going through such a rough time. My first symptom too was vertigo, and my story, along with thousands here, read pretty much like yours.
Run from the GP that told you they wouldn't do the Western Blott without a positive Eliza. That's lunacy and based on extremely dated information. You need to get a Western Blott from www.igenex.com.
Please reach out to the nearest LLMD and make an appointment as soon as you can. The longer you wait, the worse this will get.
In the interim, please keep reading here. There's permanent links posted at the top of the discussion board that have valuable information that will help you in your search for wellness.
I think you will relate to the part were patients with Lyme say they had been to Dr after Dr, told their labs were fine, etc.
That was my story too. I really believed "my labs are fine, all the scans and tests are fine, I must really be crazy"....until the fevers started and never went away. Even then the ID Dr tried to dismiss it.
Lyme seems like a whole lot of weirdness going on in different parts of your body, that no one can seem to tie together.
That was the case for me and my husband. We had 2 totally different sets of symptoms.
My symptoms were: excrutiating fatigue, brain fog, at times vertigo, lost vision once, low grade fevers, headaches, sore neck and shoulders, twitchy eyes, could not concentrate at all.
He had skin rashes, migrating joint problems, then torn achilles tendons for no reason and finally skin ulcers for no reason.
2 totally different sets of symptoms. However, all caused by infection.
The mainstream Drs mislead you by telling you that "you're labs are fine". You will find that there are sooooo many lab tests that they fail to run, that may not be "fine".
You are in the right place. Please make an appt with an LLMD.
Posted by Lymetoo (Member # 743) on :
You've been given lots of great advice!! Check out all the links and esp the video!
Do you mean you have "Raynaud's" instead of "Reynolds?" It affects your fingers and toes?? Can be very painful!!
I have that also. I do believe Lyme caused it for me.
If you haven't already done so, be sure to post in Seeking a Doctor to ask for one in your area.
WELCOME!! Posted by samiam (Member # 36330) on :
@lymetutu. I did mean raynauds. My phone auto-corrected. I posted on seeking a Dr. My concern is they don't except insurance. I've been out of work four months and I'm a single home owner. I need to find a way to get to the bottom of this. I'm not sure if it is a Lyme.
Posted by tickbitt (Member # 33753) on :
I think the vertigo is usually a sign of babesia. That's very unfortunate because the medicine for it is very expensive.
TMJ and joint pain sound like lyme. Headaches and fatigue could easily be any of the big 3 (BBB - borellia, Bartonella, and Babesia. Or, unfortunately, any one of a half dozen other co-infections.
There are a lot of good ideas upthread, but the most important thing is to find an LLMD who can diagnose and treat you.
I wish I had good ideas for $$. It can be awfully expensive between meds, labs, doctors, and supplements.
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