So ok if all the dizziness is coming from the central nervous system, then why did I have the feeling of ear fullness in the beginning of all this crap?
Could it be that the 8th cranial nerve leading to the ears could have caused that symptom?
I get all my dizziness now with eye movement. For example, I can sit perfectly still and move my eyes only and get dizziness. Thats central nervous system right?
My ENG was normal. This therapist does know how to work with people with Lyme disease. You should see the crazy exercises she has me doing.
I also see my eye dr tomorrow. We know that I have convergence disorder but I don't think that can cause dizziness? I thought that just cause eye pain and blurry vision.
Should I try and see a neurologist? One that knows how to deal with Lyme disease?
Im so frustrated. At least we are ruling stuff out but still.
Grrrrrr.
Nancy
Posted by Lymepool (Member # 15827) on :
I understand the frustration. My child had the issues you mention; had tests to rule out any other issues.
Take what I am writing with "a grain of salt". I am not a medical person, but I have seen a lot of testing over the past two years trying to figure out what was wrong with my kid. (Diagnosis = Babs & Bart.)
Even though a symptom may come from having a tick borne illness, it can still be helpful to have specialist watch over/treat certain symptoms. Three symptoms showed up for my child during two years and are treated by specialists:
1. Vertigo/dizziness - Vestibular Rehab Therapist
2. Headaches - Vision changed in one eye, discovered by school nurse and verified by opthamologist. Glasses helped to decrease headache and some of the dizziness. A good eye exam can tell if certain parts of the brain are functioning properly.
3. Postural Orthostatic Tachychardia Syndrome - Discovered by cardiologist. LLMD said POTS happens often in people with TBD. Cardio doc prescribes meds and diet to adjust blood pressure.
Even if the doc doesn't agree with or understand ILADS approach, the doc may still be helpful in taking care of some part of one's illness.
Best of Luck in your search for wellness!
Posted by lymeHerx001 (Member # 6215) on :
Nal you never answered me if you are sensitive to smells.
My vertigo sounds very similar to you. I wonder if there is some sort of brain damage/ overload that we share?
Please answer.
Posted by Nal (Member # 6801) on :
No, ive never noticed any sensitivity to smells at all. When i get hit with the dizziness it just comes out of the blue. Part of it could be toxin build up too from treatment. Its really hard to say.
What kind of scents/smells tend to set you off?
Posted by lymeHerx001 (Member # 6215) on :
Im sensitive to petro chemicals and mold. It increases my dizzyness %500.
Thats very strange that you dont have the symptoms of MCS. Most people have that on this board.
I thought your vertigo was constant? Does it come and go now?
[ 09. December 2008, 08:53 AM: Message edited by: lymeHerx001 ]
Posted by lymeHerx001 (Member # 6215) on :
I hate mold! I cant believe the building that I work in has moldy places. It makes me so so sick!!!!!!!!!!!!!
Posted by Keebler (Member # 12673) on :
-
Amanda,
I think your doctor does not know enough about lyme disease, as you seem to suspect. I wish you could see a LLMD who would assess you for lyme and coinfections, too.
I hope your PCP is following the stuff below. Most doctors and most labs don't go very far with testing "everything" - very little done on chronic stealth infections.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
[ 10. December 2008, 05:24 PM: Message edited by: Keebler ]
Posted by lymeHerx001 (Member # 6215) on :
how is the vertigo Nal?
Posted by Nal (Member # 6801) on :
Its the same. The therapy is gonna take a long, long time to change anything. I just keep plugging along.
Posted by lymeHerx001 (Member # 6215) on :
Sorry nal, how many weeks has it been?
Posted by Nal (Member # 6801) on :
Its only been 2 1/2 weeks. I guess this therapy takes a while before you start to notice a difference. I just have to keep trying. Its just annyoying.
Posted by lymeHerx001 (Member # 6215) on :
Well not to discourage you but I have said this before, its been 5+ years with me. One day it just became chronic and never went away.
Please do let us know on your progress or any other tests that you might have.
Myself Im thinking of going to a vestibular dysfunction center at Yale or New York. The vertigo/dizzyness bothers me that much. And the ENTs just shrug their shoulders.
Posted by Nal (Member # 6801) on :
Im sorry your suffering so much too. Its so hard to deal with. Sometimes I wish I would have been diagnosed with something else that just had a treatment you could go through and all would be better you know?
How do you handle the dizziness?
Posted by lymeHerx001 (Member # 6215) on :
Well its chronic and theres not much I can do about it. The vertigo used to go away on its own or with homeopathy but now homeopathy helps very little. Fenugreek herb also used to help.
The excercises made it much worse.
There is no doubt that there is some part of my brain stem/nervous system thats stuck in an 'on' state. How to correct that is beyond me.
All of the therapies cost mega $$$. Insurance only goes so far. Im hoping that Yale will take insurance! I was considering even putting a full page site/ad on the internet offering my living body to science because I was so fed up with the vertigo and MCS and fibro.
Posted by Nal (Member # 6801) on :
You and I both feel that way! Just put a full blown add out there and offer living bodies to science! With my luck the only thing they would come up with is stress and anxiety after all their testing!
Nancy
ps. Can you describe your dizziness to me?
Posted by lymeHerx001 (Member # 6215) on :
Nal when I close my eyes I feel as if I am slowlly falling forward. Or like I am on an elavator going down.
If I turn my head quick to one direction and then stop, I feel as if I keep moving.
Also my arms feel like they are growing longer all the time and my head feels like a ballon floating away from my torso!!!!!!!!!!
How would you describe your vertigo/dizzyness.
BTW I have had dizzyness from blood pressure and thats different then vertigo (sense of motion that isint there).
Posted by nan (Member # 63) on :
I think many of us have experienced the exact same stuff. About the only thing I know of that helped were the antibiotics and time. Amazing how these crazy sx can come and go.
Hang in there...take your meds...keep a symptom diary.