posted
My name is Rob and I am 26. I was bit by a tick when I was in 5th grade. I never noticed a rash or symptoms immediately. I started having symptoms after an auto accident in 1998. Mostly fatigue, brain fog...pain everywhere.
I like many others, went to many diff. doctors without help. Poked, pricked, pulled, screwed. Was told everything from "your just lazy!" to "your gunna die!". Then when my mother died about two years ago (which I come to find later was probly from lyme)my symptoms went crazy. I finally found great long-time friends who also have lyme and suggested I get the right test. He put me in touch with one of the north easts best lyme doctors who with a miracle snuck me in.
Poked again.(I must say this over and over because I have a HUGE fear of needles/blood or anything close too them. I can skydive and do almost anything else, but no needles. haha)
Anyways. He was 99.9% just by my symptom list but the tests came back positive as well. Lyme. Great. Better to know or not to know? Guess better to know.
I came back to colorado and have been on Doxy oral for 2 months with nothing. No better. Not worse enough to where I would consider a herx. Plus. Hard to keep some pills down at times even with the right foods and plenty of water. I have been staying with my grandmother with has been nice. My father is out trying to support this working in D.C. and she can keep me focused on meds and supplements quite well. She is also a good cook. Ill keep moving as this is turning into a novel.
I applied to medicaid this past monday which i was prepared for thanks to this site and I hopefully become a rare first time positive. Im prepare with lawyers as my sister is dating one. woo hoo! Hopefully I dont have to go down that road. I was told though I would need a local doctor. That was upsetting. But, I ended up finding one that knew lyme and tottally agreed with me and my doc's plan so far. One thing though. He wanted to me quit the oral and go on the si called "cadillac of avx" I.V. Rocephrin. Not sure if thats the spelling. Its early. I went ahead and did it, i have had three days worth and so far been ok, but my arm us till a bit sore having a picc line to my heart. The thought almost makes me pass out and then having these things attached is really bothering me.Is there any of you that have any secrets for this? I find myself in tears most of the time. A 27 year old grown man in tears over supposedly doing the right things. Please let me know if im on the right track. Also any advice would be great. Thanks
-Rob
Posts: 30 | From Colorado | Registered: Feb 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Rob
I wanted to suggest that if you and your dad want more information, you/he could go to www.natcaplyme.org
If he wanted to, he could attend one of the monthly support meetings in D.C. (usually the first Sunday of the month) to hear suggestions and personal experiences of folks who are going through what your family is.
My 25 and 22 year old son have tickborne infections. Me too, but I have been symptom free for over a year. Each of us has a different mix of infections/symptoms. Each has followed different protocols.
I would suggest you continue to read lymenet to be informed. I wish my two sons would, but they don't.
Work with your llmd; ask questions. Track of your symptoms on a calendar or handout (a big help)
Scott Forsgren has a great site to visit and the public health magazine has great information on line.
Hang in there!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
get a LLMD post for one in Doctor section get treated it will not go away onits own.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey G...
Your fears and concerns are totally NORMAL!
I'll say it again.
Your fears and concerns are totally NORMAL!
You said.. ducks (that's what we call STUPID doctors) said STUPID things like... "your just lazy!" to "your gunna die!".
If you were a girl.. you may have been told you need to settle down and get married, you are just getting old, you need to loose weight, too much stress, it's just your hormones, etc.
So when you are told those IDIOT things.. just know it helps confirm the Lyme diagnosis.
You said... "... when my mother died about two years ago (which I come to find later was probly from lyme) my symptoms went crazy."
TOTALLY NORMAL! Any stress can make your symptoms flare and make you MUCH worse. If they DIDN'T get worse due to a death in the family... I would think you were NOT normal.
I am glad your long time friend got you in to see a LLMD. Bless their heart.
And I am happy your sister is dating a lawyer... lucky YOU!
Now.. do you have a VCR or some way to record from TV?
If so.. tape the next NASCAR race. Hopefully Ryan will be in the lead.
Then when they come to your home...
Or get a race on a CD and take it with you to the lab/hospital...
And they need to do that awful "needle" thing...
Put on the race.. get settled, then look in another direction or better yet, close your eyes and pretend you are AT the race... and it should be easier for you.
Yes, I am serious. Whatever it takes to distract you from the procedure. And Newman chasing down Gordon would do it for me.
As for the doxy causing you problems... it is good to have an alternative.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry.. had a pit stop to make.
You said.. " but my arm us till a bit sore having a picc line to my heart."
It will be sore for a week.. maybe longer. If you are like me.. I absolutely, no doubt, for sure HATED that line!!! Probably more than I have ever hated anything.
I had one in my chest. It totally freaked me out the entire time. I wanted to pull it out and get it out of me. It drove me bananas!
Note- Not all folks are like this... but I sure am. I don't mind the needles at all... but I HATED that pic line! With a passion!!!
Soooooooooooooooooooo.. you might want to try to stay as unfocused on it as possible.
Cover it with a CLEAN sock (with the foot cut out) if your arm is not too large. You don't want it tight.
OR... if your Grandma is as good a seamstress as she is a good cook... ask her to make some "man" styled slip covers for your arm. Bet she could even find some NASCAR material to use?
Then you would ALMOST be as cool as me. HA!
Now.. as for the tears...
I don't care if you are 46 years old, a super man, a gorilla, or Dale Jr. (gotta love those commercials)...
This stuff totally sucks!
I cry too ... and don't tell anyone.. but I am "too cool" to cry.
It is NORMAL!!!!
We often call it an "emotional herx". The keets got in your brain. The meds are killing the keets. The body is rolling down the track, like Stewart with Goodyear tires.
Your body, like Stewart, isn't going to be too happy.
BUT.. it will get better! It will. I am SURE of it.
No doubt.
So hang in there and know that what you are feeling and what you are doing is totally NORMAL!
Totally normal.
Totally.
Now.. do me a favor, if you please.
Go give your Grandma a hug and thank her for taking care of you.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm sorry young man that you have had such a rough going? I did want to tell you that crying is part of the illness. It is so frustrating to be ill for so long and not have anyone to help you with your daily struggles of pain, depression, fatigue, GI issues, etc etc.
It makes you feel alone sometimes even when there is another person who loves you sitting right beside you. I hate needles too. I mean I hate hate needles. I don't even watch another person get a shot, even on TV.
I had the IV thing inserted in my home and it was oh my goodness a trama to my body and mind. Your body isn't happy about that object inserted into it. Neither is your mind happy about it.
Try to surround yourself with laughter and funny things. I know it's hard but try. Funny TV, funny movies, funny books. It isn't all doom and gloom.
There can be many rough patches ahead. I seen it written and I believe it....the treatment can be worse than the years of pain & suffering. It's like the bacteria go to war to fight the abx, right in the middle of your body.
When these bacteria fight for survival, they can take you down with them. They are what many would call a SUPER bacteria. They are strong and able to hide in places the abx can't get to easily.
This lyme bacteria can even change it's face and structure to avoid the enemy (your immune system & the abx). Your body will probably become a battle ground? So you must prepare it for battle.
It's not only what you are putting into the body, but also how everything exits the body or is disposed of. So now it's a toxic battle ground.
I hope you find info that is reassuring to you during your recovery.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Hi Rob.
Many of us have been in your shoes, esp. with the PICC line. It's a nasty idea, but can be useful to bump you up to the next level or perhaps to zap the bugs entirely!
I do not want to freak you out- apologies in advance- but (the proverbial...) I got blood clots from my PICC so if you feel any pain or see swelling, please do not hesitate to contact your LLMD or head to the ER to have them do a doppler study.
I agree with everything tincup said. The crying and the sock thing, too. Emotions are allowed to run rampant here!
dawn
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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daise
Unregistered
posted
Hi Rob,
I had a PICC line through my upper arm for Rocephen for 6 months.
All went very well. I kept the line opening meticulously clean (I bought two extra boxes of alcohol wipes, super cheap at Wal-mart.) I used a tray for syringes (are you using syringes or a bag?) I cleaned the tray with alcohol wipes.
A nurse came by once a week to change the dressing. She used the alcohol-wiped tray, too.
You said you don't like blood. I just want to prepare you ahead of time ... sometimes my blood would back-up a little bit, out the line--I could see it. I hadn't used the little lock hanging on the line.
If that happens to you, you'll know it's OK. Just lock it. It's OK.
The home health care nurse often drew my blood right from the PICC line, for testing. You mentioned you don't like needles--well--this is a way to draw blood with no needle used. YOu might let your local doctor know about this, if the nurse says it's OK.
Valymemom suggested you keep a diary or journal of your signs and symptoms. I second that motion. Your doc will look for herx patterns.
You can keep track of nurses taking your pulse, temperature, etc. You can note when you had your blood drawn. What days you maybe had diarrhea or any NEW symptoms, etc.
I used a chart, 11 x 17, with a list of signs and symptoms on the left and at the top, a box for each day of the month. I had three sheets of signs and symptoms (and other things to look for) for each month.
I put notes on there when my doc ordered a blood draw so I could remember to mention it to the nurse, just in case her communications weren't good.
You talk about a duck? Blood? Tick bite 16 years ago? A PICC. And you're crying? My gosh, you must have chronic Lyme disease!
Please come back.
Gee, I hope you're informed about herxes. If not, just ask.
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