posted
Hello Im new here and been browsing around looking for information on here becoming ever more convinced that medical practicioners are just silly.
Anyways I'm wondering if what I have sounds like lyme to anyone else. Number two on my worry list is lupus but I think lyme is in the lead.
My story goes that I was a rather active and healthy child who around middle school developed a slew of strnge problems including allergies and asthma.
I made it to high school just fine dealing with it all but slowly became slower and less active and worn out at an age when my friends never seemed to need the naps I so craved.
At 18 I got a headache that lasted for around 3 months and although the neurologist said everything looked normal my head sure didn't feel it. That became the story of my life.
It took a college roommate having fibromylgia and several drs including the rhuemy that said "thats just a fancy name for chronic pain" and my original gp who directly quoted "you don't have fibromylgia, it doesn't have a cure you don't WANT fibromylgia". I only wished instead of sneaking past the receptionist and out the building crying I had asked him instead what he told his cancer patients...
Anywho I got the fibro dx about 5 years ago I think maybe 4 I cant keep track and since then I have been given so many different meds I couldnt list them if i sat here for an hour trying to remember. None seemed to provide relief and in the last 8 months most have been only giving me negative side effects instead.
Now I have been going to what seems to be a completely useless chronic pain clinic whos main function seems to be to give me conflicting advice that tells me on one hand I need to accept life as a chonic suffer and not live in the what could have beens and on the other that I should act and do everything as close as possible to a normal person with more restrictions like precise sleeping and waking time no naps and yada yada...
I'm trying not to make this too long but I apologize if it ends up so anyways.
My symptoms include
PAIN pain and more pain you name and describe it Ive felt it everywhere in everyway it seems. satbbing burning throbbing itching and so on back head neck feet arms hands so on.
stomach issues like cramps bloating constipation diarehea
fatigue and more fatigue. bed looks like a better and better place to stay most days.
losing my mind including memory and rationality somedays
Mood is chaotic at best. One day the sun is shinning soley cause I woke up and the next day it seems that death probably wouldnt even solve my problems...
No worries Im about to end this silly rant just a little ways further ok?
The symptoms that have really gotten me in the lyme way and reading this site today are these: I have a circular looking pinkish red spot on my head that 3 yrs ago a dr treating my fibro said was ringworm however when it failed to respond to treatment his conclusion was that it was a scar from a previous infection. I scar rather easily mind you due to dermographia.
Two weeks ago however that "scar" rather suddenly began to hurt and felt a tiny bit swollen. I went to a different dr who decided it was not ring worm but excema and gave me some cream also. So far it does not seem to have done anything although it may be a slightly darker reddish?
It still hurts to the touch a little but no longer is the driving pain it was that first night. its only about 1cm around and its just a ring. Its never hurt or been itchy or even noticeble at all (my hairdresser was the one that found it) till two weeks ago. I have a pic I can figure out how to post later.
I also saw while rooting around here that my ever appearing and multiplying pinkish and white stretch marks may be a sign of bartonella? just the other day two new ones popped up on my hips which have been covered in them since late childhood I think even though I had no outragerous growth spurts to my knowwledge and have not had any extremem weight changes.
I have been tested for lyme and had it negative by several docs but never inquired into which labs or tests they did although I did mention and got frowned at that I heard lyme was hard to test for.
Sorry this was so much... any information feedback or help is greatly appreaciated.
-------------------- If I could only figure out myself I could conquer the world! Posts: 21 | From Northern California | Registered: May 2008
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I am NOT a Physician....but there are so many more MD's that are now...treating for Lyme/Bartonella until something else is found because.....
you'll suffer either way.
The good thing...you have LLMD's in CA.
The bad thing...if this is Tick Born Illness...you have a lifetime battle ahead.
The offset of that is...I went undiagnosed for decades and am now at the age of 45 built like an 18 year old.
Working out and loving life.
Go to an LLMD....they can diagnose and treat you...we can't.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
You need to find an LLMD. :-)
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
how do I find a LLMD I dont think my current insurance is Kaiser but Im willing to go on my own if I need to but I need to figure out where to go.
-------------------- If I could only figure out myself I could conquer the world! Posts: 21 | From Northern California | Registered: May 2008
| IP: Logged |
To get references to LLMD's, please post in the Seeking a Doctor forum right here on the LymeNet Flash.
Give a brief description of your symptoms and your location CA, ie: county and closest city.
One of our more experienced members, who have taken on this helping role, will send you a Private Message (PM) with the info.
Take care,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
| IP: Logged |
bettyg
Unregistered
posted
.. zoey, welcome; so glad you found us!!!
lou has guided you to SEEKING DRS. and i'll see you over there.
by the way, thanks for the wonderful, detailed, BROKEN UP text making it easy for us neuro lymies to be able to comprehend and read your post!
i'll post my welcome to you also below, and disregard my comments about breaking up text; it's directed to those who have joined and NOT POSTED yet so they know what is helpful to us so that we MAY HELP them !!
WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
IP: Logged |
posted
thank you bettyg I had seen youre post on another newcomers thread and was sure trying to get it right so I wouldnt cause too much strain to people and its nice to see I did ok!
also on a side note my beloved gramma is often called betty g. lol
-------------------- If I could only figure out myself I could conquer the world! Posts: 21 | From Northern California | Registered: May 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!
![[Wink]](wink.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic