posted
hello all....i just registered and have surfed a little and let me tell you it blesses my heart to see im not the only one having this.
i was a dog breeder and lost two of my pups last summer to tick fever..days after losing them i was seen at the er with severe headaches, unimaginable body pain, and fatigue. they went ahead and started me on doxycycline and tested me for lyme which came back a week later positive.
after the 10 days of oral antibiotics...i was worse!! my family doc sent me to another doc out of town who was the middle man for a disease specialist from California...the docs were very open about not knowing what they were doing. they then decided it was time for IV treatment...they were going to have me come to the hospital daily for 21 days and get an IV inserted and taken out..after pricking me several times with nothing but blown veins from severe dehydration..i told them not to touch me anymore i was going home...upon returning they decided a PICC line was better....all this fell on memorial weekend and no doc offices were open to put in my PICC Line so I had 5 agonizing ER visits of Rocephin shots in the hip...oh my talk about painful...they then started me on the IV treatments and I had homehealth for 21 days...all that was during the summer of last year.
Today, I still have problems with memory, i repeat myself a lot, foggy minded quite often..i stay away from driving as much as possible...the body pain is unreal...where i never got sick before i'm the first one to catch a bug, it affects me twice as bad, and i keep it twice as long....cold weather is my enemy because it makes me stiff..and heat is awful cause of dehydration...my legs and arms go to sleep pretty often...i hurt deep if that makes sense...i'm good for a couple of weeks then i have about 3 days of down time...some down times are worse than others...my blood pressure runs extremely low, my oxygen level stays low as well as my temp....i get shortness of breath and tightness in the chest..this is after 5 wks of antibiotics..my docs pretty much said they gave me all the antibiotics that my body could handle and left me to deal with the symptoms..
they tried me on a medication for fibromyaliga and it made me worse than i was before...the doc asked me if it was working and when i told him no it made me worse he says "well i don't know what's wrong with you then"..therefore i'm looking for another doctor...that by itself is hard in oklahoma because the disease is so extremely rare here..
anyway, it helped a lot to find this place because now i know its not "in my head"...i know there is reason to be concerned..and i know there are others that are experiencing the same thing i am...
Posts: 6 | From oklahoma | Registered: Feb 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
WELCOME Blue,
There are some others here that are from Oaklahoma....maybe they'll be along to say "hi".
You obviously know that you need to find a LLMD and continue to treat....post in the looking for Doc section.
Sorry that you are now amongst this group, but glad that you found us!
Posts: 3975 | From usa | Registered: Aug 2007
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i'm not from Oaklahoma...... just wanted to say hi.....
good idea to post in seeking doctor......and also medical questions.........
i know some one will respond...for help with a doctor....
this website is a blessing...... sorry for your painful journey.....
unfortunatly and fortunatly you are not alone.... but you are in the right place.....
you'll find comfort and support here.....and information....
stay strong...... you will get better......with a good doctor and good treatment......
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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echostef
Unregistered
posted
Welcome, Blue! Your story sounds like a lot of ours on here. Several months ago I was in so much pain that I was sure my body was going to shut down. Very slowly, with the help of two great LLMDs, my 8 year old daughter (who is also LD+) and I are both on long road to recovery. I do not know of any LLMDs in OK, however, the two my daughter and I see are located in North Central TX and Central LA. We drive 6 hours to LA once monthly and it is WELL worth the trip. Please let me know if I can send you any of their info. Best of luck, Stefanie
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi and welcome
Try posting in Seeking a Doctor to see if there's anyone near you that's recommended - an ILADS lyme literate doctor.
Alternatively, as your doctors at least don't sound hostile but rather 'lost' and, from how it sounds, are admitting they're poking around in the dark, perhaps they'll be open to you educating THEM by giving them Dr. Burrascano's Diagnostic and Treatment Guidelines for Tickborne infections, which you can download from www.ilads.org (treatment guidelines). You could also print the ILADS guidelines.
Inform your docs that there are two standards of care and this is the one you'd like to go with after finding out that others, like you, don't recover on short-term antibiotics.
You may also have other tickborne co-infections, which may be why you're not been 'cured' so far even though you've been sick a relatively short time.
BTW, ILADS stands for International Lyme and Associated Diseases Society.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hi Blue one!!
Just sent you a PM(click on flashing envelope at top of page).
Just wanted to send another howdy to yall. welcome aboard!! Glad you found us,,but sorry for the 'need'.
IF progress is stalled in treatment suspect co-infections. Seek out info on any and all and see what lines up with your feelings!!
So are you an Oklahoma sooner Fan,,,or Oklahoma State cowboys fan??
Stick around and read learn and ask questions!!
Welcome fellow Midwesterner!!!IB--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Just wanted to say hi. I'm originally from OK, and am pretty certain that's where I got Lyme, back in the olden days, when I was a kid.
I'm about to become a grandmother now, so that gives you an idea how long it's been.
I agree that you should post in Seeking a Doctor to find a LLMD.
While I'm not aware of any in OK, I know there are some in neighboring states, depending on where in OK you are.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
^
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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mtree
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