My doctor called me on Wednesday and told me I tested positive for Lyme. I believe that I got bit by a tick 5 years ago when I went camping at the beach.
I had a the rash on my thigh but it went away. Only being 17 at the time I was dumb and didnt go to the doctor. I dint even know what Lyme disease was.
I remember soon after that having a lot of illnesses like stomach problems,alot of infections, blurred vision. I thought I was a person who got sick alot.
Years went by and I still had issues but I managed with them. Well in April 2006 I got pregnant and I really got sick.
I was constantly falling down, having infection and was put on bed rest from 6 mo on. The doctors thought I was a little crazy.
Well I had my baby in February 2007. I had to have an emergency c-section because my heart rate went up to 190.
Right after c-section I got pnemonia. I kept on getting infections. I was sick for a month straight after having my baby.
In March I started having severe headaches, stiff neck, leg pain at knee. Went to doctors and they said nothing was wrong.
My symptoms got worse and I started to have muscle weakness, extreme fatigue, fevers, heart issues, muscle twithes, joint pain, and neurological issues.
I went to the ER 10 times. Some of them said something is wrong but we dont know what. Others said it was all in my head.
I finally found a primary care doc who believed me. She sent me to see a neurologist. I tested positive for Lupus but she said she didnt think I had that and there was nothing else she could do for me.
She never even mentioned lyme. Went back to primary doc which is now July. I was in tears. By this point I could barely get out of bed, walk, complete sentence, work, drive, and I had fallen with my baby.
She decided she was going to diagnose me and forget all other doc. She ran every test possible.
She kept on asking if I had been up to Oregon or Washington. I said no and didnt know why she was asking me that. She had me take blood test and on the paper I seen she was testing me for Lupus again and this time Lyme.
I sitted and waited and was growing so depressed. I finally got a call saying I was positive for Lyme.
I am just glad I know what was is wrong with me. My doc said it is in the advanced stages. I go and see and Infectious Disease Doc on July 31st.
Could they treat it at this point? What question should I ask? Also, since I cant work can I apply for SSI. Sorry for rambling on but my family donr quite understand and I need so much support!!!
[ 29. July 2007, 05:31 PM: Message edited by: naysmommy ]
Posted by merrygirl (Member # 12041) on :
Wow what an "adventure"! Unfortunately many of us here have had the same problems.
I am relatively new to Lyme but here are my thoughts.
Get a copy of all of your records especially the Lyme tests.
In my opinion you need to get your child checked out as Lyme can be transmitted through the placenta.
Did your doc start you on any meds yet?
How old is your baby. I have also been sick with small kids so I know it is so hard.
Do you breast feed?
YOU NEED TO FIND A LYME DOCTOR ASAP! DO not waste your time with ID docs believe me.
Please go to seeking a doc section and post "need LLMD in whatever sate or city" and someone will PM it to you. DO that NOW.
Veteran members will be really helpful and chime in with better info.
My thoughts are with you and post as many Q's as you need to.
Best of luck- Melissa
Posted by naysmommy (Member # 12688) on :
I got my daughter tested on Friday. The doctor said she might get a positive because she might still have my antibodies. She is 6 months old. Also, my doc has not put me any meds she just reffered me to see an Infectious Disease Doc.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by merrygirl:
YOU NEED TO FIND A LYME DOCTOR ASAP! DO not waste your time with ID docs believe me.
Please go to seeking a doc section and post "need LLMD in whatever sate or city" and someone will PM it to you. DO that NOW.
listen to merry!! She knows the score on Inf. Disease drs....whom we call DUCKS, as in quack, quack.
This dr ( unless he's one in a hundred who actually has a brain ) will tell you that Lyme is cured with 3-4 wks of treatment.
He also will NOT treat long term. You have late stage...you need LONG TERM.
DONT go to the Infectious Disese doc, no way,,,they will kill you!!Or just watch you die.
YOU need a LLMD like yesterday!! Or soon future. Sooner you find and get to one the sooner you will get your 'life' back!! Its a LONG bumpy road back!!!
And NO you dont have to go to Washington or Oregon to get it,,,look at the number of Calif people right here on this board,,,might tell you something!! Very few GOOD LLMD's so find a GOOD one and just GO!!!
Welcome aboard,,,good people and info here,,,stick around!!while IB--just don--
Posted by Cobweb (Member # 10053) on :
Good news is-positive diagnosis. Bad news is-going to ID doc. But if that is where you wind up going-please tell us your experience-and take a copy of Dr. B's treatment guidleines with you and see what his (ID doc's) reaction is to them.
If he downplays need for long term treatment-say "sorry I didn't know you were illiterate- can I have my money back?"-and go to a Lyme Literate Medical Doctor(LLMD).
Take Care, Carol
Posted by Geneal (Member # 10375) on :
Familiar story.....Sad isn't it.
I found out I had Lyme last October.
I have a four and five year old that possibly/probably have congenital Lyme.
I breast fed both babies.
I don't recall a tick bite or rash.
What has and is saving my life is this board and my Lyme Literatre Medical Doctor.
There are co-infections that can occur with Lyme.
You have some symptoms that are reflective of possible co-infections such as babesia.
I recommend seeing a LLMD. They know Lyme....They know co-infections.
You may get some treatment from an ID doctor, but not enough and not for long enough
To erradicate or put this disease into remission.
Save your money, sanity and time. Please seek a LLMD.
Hugs,
Geneal
Posted by merrygirl (Member # 12041) on :
When you get a copy of both of your lab tests for Lyme please post them so we can help you.
Please let us know how you and baby are doing.
best wishes, Melissa
Posted by Robin123 (Member # 9197) on :
Hi -- Since you are in Southern California, you could check with the LA and San Diego support groups(listed upper left here) for the LLMDs they recommend seeing. ID docs don't treat Lyme adequately. You have to go to a Lyme-literate doc.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by merrygirl: [hen you get a copy of both of your lab tests for Lyme please post them so we can help you. Please let us know how you and baby are doing. best wishes, Melissa
yes, when you get your IGENEX western blot igm and igg back, please post: POSITIVE, IND ....NOT the negatives this way:
IGM ... show if they show positive/negative here!
18 + 41 +++ 78 IND
IGG
18 + 41 +++ 78 IND
***************
you received my newbie package of info; behind the long symptoms list are 25 pages dealing with SSDI, social security disability insurance benefits.
go to www.socialseucurity.gov and then look for SSI, if you are eligible for that...if you meet their requirements.
have you been off work 6 months; that's required for SSDI, and you have worked 20 quarters recently! more info is in what i sent you
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