Hi I need some advice: My Dr's are still questioning conversion dissorder and will not do a western blot, elsa was negative. My signs and symptoms are getting worse and I have become unresponsive twice. I have had so many tests...All of the Dr's I have seen will not persue the possibility of lyme disease. How bad can chronic lyme disease become...??? Help--I will go anywhere to be tested and treated. TTLAV in MA
Posted by James1979 (Member # 31926) on :
How bad can chronic lyme become?
You DON'T want to see how bad it can become!!!
It can completely disable you. It could force you to be in a wheelchair. It can make your mind so disabled that you get lost while in your front yard. It can make you so depressed that you will fight off suicidal thoughts every day.
But honestly, it's different for everybody. Some people might have only mild symptoms for their chronic Lyme. BUT, if you're already having serious symptoms, there's a good chance that you will only get worse.
For other people, Lyme begins to look like various other diseases, like Parkinson's, MS, ALS, Alzheimer's, etc. So ask yourself: How bad are those diseases? Would you want to take the chance and possibly get one of those?
Don't take chances with Lyme disease. Find a LLMD and go there ASAP.
Posted by Splashi1 (Member # 28173) on :
I have PM'd you the name of my doctor in MA.
Posted by scorpiogirl (Member # 31907) on :
How about brain lesions, cognitive issues, short term memory loss, peripheral neuropathy, debilitating pain, crushing fatigue. Some people have died, some are bed ridden, many lost their jobs. It impacts on your family life, your relationships, your finance... need I say more?
This is an insidious disease and very hard to eradicate. It's your life... find a Doctor who will work for you, not dictate what you can or cannot do. Fight for your life.
Posted by seibertneurolyme (Member # 6416) on :
Been there done that. Seriously though, I am in the process of summarizing hubby's medical records from the last 10 years for a new LLMD appointment.
For the first couple of years he had no diagnosis and no treatment. Once we finally got a diagnosis of lyme disease the neurologists etc still wanted to send him to psychiatrists. The neuropsychologist actually concluded he did not have a conversion disorder but had a physical illness.
The loss of consciousness episodes were very scarey to me -- especially when they went from once per week to once per day and then 4 or 5 times per day. But even more scarey were the locking up episodes where hubby could not speak or only babbled nonsense and could not move a muscle. So yes, it can get much much worse without treatment.
But the other thing to consider is that some of your symptoms could be from a coinfection and not from lyme. The tick could have given you multiple infections. Hubby's daily seizure-like spells were most likely from a bartonella infection -- finally has a clean bloodslide and the symptoms are gone after 9 years.
The Parkinsonian tremors and myoclonus and other movement disorder symptoms seem to be primarily from babesia which we are still trying to treat. Those symptoms are gone also after 9 years -- but only while he stays on babesia meds.
If you knew enough to come to this forum then you are way ahead of where I was back in 2001 when I didn't know anything about lyme disease other than that it was from a tickbite.
Please go to an LLMD or to an ACAM doc who charges by the hour and is usually more willing to at least do tests requested by patients. Or if money is a problem then look for a chiropractor -- they will frequently order lyme tests for patients.
Call IGeneX and get a test kit mailed to you or you can even order a LabCorp Western Blot test online without a doc's signature.
Take back your life. Get tested and find another doc who can help.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
P.S. Also you need to be aware that a negative test -- even a Western Blot does not rule out lyme disease. IT IS A CLINICAL DIAGNOSIS!!!!!!!!!!!!!!!!!
Posted by lpkayak (Member # 5230) on :
hey bea-your mailbox is full...i wanted to know who the new llmd is but really i'm just trying to keep yoiu off-task like i am
Posted by lou (Member # 81) on :
It is usually a waste of time and money to keep going to doctors who don't know anything about lyme and that is the majority. So, stop expecting oranges on apple trees. You live in an endemic state and they should have been better educated. Since they aren't, you have to go elsewhere. It is time to cut the ties, fire those docs who aren't helping you.