I got bit in 1987. Blood tests were always negative. It took me 19yrs. to find a dr. who actually believed me. Right now I am so sick, it's a wonder I'm alive. But I know, that you all understand that. I have spun off multiple auto immune diseses, etc, etc. You know the deal.
I will be starting IV Doxy next week after I have a PIKK or some other type of line implanted. When I read about Herx, it scares the hell out of me. Is there anyone out there that's been untreated as long as I have? If so...did you get Herxheimer? Does everyone get it? I read Wildcondor's story and it scared me to death. Quite frankly, I don't know if I could have survived what she went through. Now I know, everyone is different, but I am losing my mind right now. OH yeah....I have maxi psychiatric problems with Lyme. Lucky me.
Right now I can barely string a sentence together, my neuro functions are so bad. I am trying to be positive, but it's hard as I don't have a supportive husband. Plus, I am the Caregiver to my blind 87 yr. old Mom who lives with me. I also take care of two brothers, one with cancer, the other with a brain tumor. My business is slowly going down the tubes and I am unable to stop it. I am also unable to pay bills and I am ruining my credit, besides being sick.
How hard is SS disability to get? I feel hopeless and helpless. I need some words of encouragement, as I am at the end of my rope. Thanks. Please feel free to email me. [email protected]
-------------------- Nineteen years without treatment. Cranky and miserable, but ready to start IV antibiotic therapy. Please pray for me, as I am very sick. Posts: 15 | From Boothwyn, Delaware Co. PA | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Trina. I'm glad you found us! My goodness, you've got a lot on your plate.
Are you now being treated by a lyme-literate medical doctor (we call them LLMD's)? Must be, if you're getting a PICC line. I was pretty scared of getting my PICC line too but it turned out to be pretty easy. Hey, there are lots of kids running around going to school with PICC lines in, so we adults can handle it, right? :-)
How long has the LLMD been treating you?
Disability is almost a topic unto itself! If you read our "Newbie Links" at the top of this forum, there's a section on Disability with some helpful tips.
Herxheimer reactions vary from person to person. Intense for some, mild to non-existent for others. You deal with it as it comes, backing down on meds a bit if needed then building up again slowly.
Neurological lyme disease can sure cause psychiatric issues. So you might be pleasantly surprised to see some of those issues resolving when you start treatment.
There have been many good discussions here about how to educate your significant other to the complexities of lyme disease without him falling unconscious.
Read the newbie links, post lots of specific questions, and come here often for support (we have a "General Support" board too).
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Trina,
Welcome to the board. You are not alone. I was untreated for 17 years. Amazing that this happens, isn't it?
People all react differently, but most do herx. You sound like you have a lot on your plate. I recommend making sure that there is a safety net in place so other people can fill your place if you need.
I always warn my boss when I start a new antibiotic that I might suddenly be out. It only happened once that I had such a bad herx I couldn't work for a few days.
Also, a bit of housekeeping. It is easier for people to read posts if they are broken into short paragraphs. Some people get neurological symptoms from Lyme and it gets hard to read big blocks of text.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Thank you for answering my post so quickly. I am new with this posting thing, and since neuro problems are rampant...I'm a little slow, but getting it.
I FINALLY found a LLMD. I've only been to him 2x so far. My third visit is 12/19 that's when the PICC will be scheduled and I will start IV doxy. I don't even know the logistics of it. I am hoping I can hook myself up at home. I've been pretty sick for 19 yrs., so I am not at all squimish about dealing with my own IV. I really like my new dr. He believed me when I told him all about my bite (classic bullseye) and ongoing illnesses. He was amazed that all the drs and hospitalizations I've had over the years, and still no treatment. I told every dr. I ever saw. "I HAVE Lyme Disease, I've NEVER been treated". They blow you off like a dandelion fuzzy. My hemotologist stayed on me, until I found one or she was going to send me to an Infectious Disease dr. I saw a couple of them over the years. They didn't impress me. All any dr. did was the standard blood work, which always came back negative. When my new dr. ordered a Brain Spect Scan. I finally got my positive diagnosis, enough to please my medical Ins. co. I was a healthy 32 yr. old young mother just enjoying life when I got bit. Now I'm almost 52. I am so sick, it scares me. I've never really been afraid to the point of losing sleep, but I am now. I guess its the fear of the unknown. Or just feeling weird that something is finally being done. I can't explain it. But since neuro problems are extensive, I have trouble putting a thought together.
Thanks for you kind words. I will be on this site everyday, as I have little attention span for anything else right now. I'm trying to hang in there. Wish me luck.
Trina
-------------------- Nineteen years without treatment. Cranky and miserable, but ready to start IV antibiotic therapy. Please pray for me, as I am very sick. Posts: 15 | From Boothwyn, Delaware Co. PA | Registered: Mar 2006
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posted
hi I was misdiagnosed for 16 years. I am western blot positive, as are my children, all born after I was infected.
I have neuro lyme so severe that I was nearly dx with ALS.
I am not on IV, doing mino instead. I started slowly. The herxing was extreme at first, imncluding a psychiatric kind of herx. Don't know how I got through it.
I am about 3 months into treatment and starting to see mild improvement. Still a long way to go, but definite improvement.
I just kept telling myself that the herxing is a good sign and stuck with it.
You have a lot on your plate. You sound like a do-er with a lot of inner strength.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Welcome to Lymenet!
I was undx'd for over 40 years and am on oral abx. I did herx when I started, and continue to herx each month. The beginning herxes were worse than they are now.
Your herx should just be an intensification of the symptoms you already have. For me it includes severe fatigue, brain fog so thick I can barely think, and increased joint pain, which is usually in my knees and hips.
We all react differently, and some people never do herx, yet they immprove on treatment.
Try to focus on the day at hand only. That will help you get through the next few weeks and months. Perhaps your LLMD can rx something for anxiety to help you through this time.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Trina, like many of us, we have become too sick to work. We have had to make a larger plan. I had to quit work,people in my family had to take care of themselves, etc.
It sounds like you are taking care of too many and doing too much.
In order for the body to heal, it must rest.
It does get better, but it takes a long long time.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I'm in PA too. 14 years for me w/o a proper diagnosis. I know exactly how you feel.
Everyone here is so supportive and I'm sure you will do fine!!
Posts: 867 | From PA | Registered: Jan 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Trina
I got bit in 1986 --did not figure out that I have lyme until 3 yrs ago--
I was Very Sick-- Now after about 3 yrs of Good treatment I am feeling Perty Good--
Most everyone herxes - its the price you have to pay to get better--Ouch--
Look into the programs that med companies have to Give people with no money Free meds--
I signed up with-- Bridges to Access-- (GSK)
It was Real Easy to sign up- to get free medicine--took 10 minutes- and you can get meds from them Same Day--
The Bridges to Access folks and Super nice and Very helpful -- They will give you meds for a year-maybe longer ---
They mail meds to your home-UPS--
Most of the med companies have similar med programs--
Trina--You have the Hardest part of getting well Over with now--
Figuring out what is wrong with you and finding a doctor to treat you is by far the tuffest things you will have to go threw- and you Already have them done--
And you Already found LN too-- so thing are looking up for you-- Now--
Make Sure you figure out if you have any co-infections--most people do-- Doing this is Super Important--
Trina -I was Super Sick-- Now I am feelin Perty Good--
You will too --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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