posted
I've been deaf since birth and learned how to speak without being taught any sign language. I've had chronic major depression since I was 20. Four years ago, at the age of 33, I ended up with a brain lesion.
After months and 5 MRI scans, the lesion shrunk to reveal two tiny strokes. I had been tested for lyme while I was in the university hospital in Pittsburgh and the results were negative.
I had learned that my strange symptoms match to that of Lyme disease. I'm 38 years old and I don't know what to make of all the information I'm reading.
I have tried many alternative treatments for my depression and health, and found that nothing worked, so I'm not really trustful of alternative treatments.
My deafness makes it difficult for me to interact with people, as I can lip-read only up to a point. Most doctors talk way too fast for me to lip-read. Having my husband with me just doesn't work. I need to understand the doc for me to trust them. I can't even do support groups because I cannot follow group conversations.
After reading all this information, I wonder if this is real for me. Even though I still suffer from depression and various symptoms, I don't believe I'm sick from the Lyme disease - just from depression and perhaps, hypochondria.
Docs have poo-pooed my physical symptoms other than those of depression.
-------------------- 38 year old deaf woman not yet diagnosed - had a mysterious brain lesion 4 years ago and tested negative on the ELISA. Posts: 9 | From Pennsylvania | Registered: Feb 2010
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to Lyme Net ww...
Sorry you are having so many health related problems from an unknown cause. Frustration must be something you are dealing with regularly. Sorry about that.
There are some wonderful folks here who will be able to assist you... even if you don't have Lyme they are very kind and helpful.
The first thing I suggest is to try to find a Lyme literate doctor to help make a proper diagnosis... Lyme or not. As you may have read, Lyme tests miss 75% of those who are infected.
To top it off... you live in a state with a very high incidence of Lyme.
In the Seeking A Doctor section you can ask for help if you'd like someone professional to consult with about your situation.
In the meantime, read read read. Education is your best friend.
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
ww, welcome to lymenet.
Did you have a Western Blot test?
Have you ever been bitten by a tick to your recollection?
Please consider visiting a Lyme Literate Medical Doctor (LLMD) and get tested for Lyme. They are the only ones who will give you the proper tests you need to know if you have Lyme disease. Even then, Lyme disease is not always detected on tests, it's a clinical diagnosis.
The best way to know if you have Lyme disease is to see an LLMD. The test you had at the University hospital was most likely not a Western Blot test. It's really important that you have this test done by a LLMD to rule out the possibility of having Lyme disease.
By the way, since you don't know sign language, one idea is to take your laptop to the doctor's office with you and tell them to type their answers to your questions. Just tell them to abbreviate the words and give direct short answers to save their time (and yours).
The ADA law requires doctors to provide sign language interpreters for deaf people during their appointments. Since you don't know sign language, this would be the next best thing. I know some doctors aren't patient and would rather not do it, but they have a legal obligation to communicate with you in the way that best works for you. ADA=Equal Access.
Some interpreting agencies do provide interpreters who are specially trained to communicate through lip reading and gestures. They use them for their hard-of-hearing clients and they specialize in moving their lips and use body language to communicate with you.
I'm sure there's a Deaf Service Center in your area that you could call to ask about this service. You deserve to know what's going on when you're in your doctor's office each time you go. Your health is important. It's important that you be as assertive as you can be in making sure that the doctor communicates with you, even if he/she has to write it all out on paper.
Anyway, I do hope you will search for a LLMD in your area and get properly tested for Lyme disease. If you've had it for as long as you've had your symptoms, the sooner you start on treatment, the better!
Gary
P.S. You might be wondering how I know this information regarding Deaf people and sign language, etc. Most people here don't know this, but I'm Deaf too. I became Deaf when I was 27 years old (not related to lyme) and learned sign language soon after I became Deaf. I'm involved in ministry to the deaf and I also do Deaf advocacy work for Deaf people.
Posts: 1349 | From OK | Registered: May 2005
| IP: Logged |
posted
It is possible to be born with Lyme disease, or to have acquired it from a tick bite any time later in life.
Any chance that your mother could have had it?
LLMDs are known for being among the most patient and compassionate of doctors that any of us have visited, and they tend to take an hour or more with you at appointments.
Mine gave me so many instructions that he had to write them down or give me a checklist so I could remember them.
I'm sure that many or most of them would be willing to type or write answers for you at an appointment.
All their Lyme patients have a variety of impairments from Lyme, sometimes including hearing impairment.
An LLMD is the only person I would trust to tell me that I didn't have Lyme disease.
The reason it seems that they diagnose a large percentage of people as having it is because we have mostly diagnosed ourselves before seeking them out.
But they are the only doctors with enough experience of people who DO have Lyme to say if someone does NOT.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
One good way to find out is to take a round of Doxy and go off for at least 10 days and test with Igenex. Many lyme patients ears are
effected. Some have super hearing, others go deaf. There are many with arterial vasculitis, and brain lesions. You can spend a lot of time
looking those up. Lyme with ****. or Borelia infection causing ****. The sickest patients usually do not show a lot of bands on the
testing. But if even one band is pos. it should be pursued if symptomatic. Some docs think this bug has to be treated like Syphilis in that it
can become latent and then reinfect. So in order to see them sometimes you have to kill a few first. Prayers you get some answers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[dizzy]](graemlins/dizzy.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic