Hi I posted a few times today so I figured I would introduce myself. Excuse my typing. I actually do know how to spell and am an alalyst for a software company. However, fingers typing don't always obey lyme brain...you get the picture!
I got bit in 1974...In Sayreville NJ. Of course, they blew the rash off as an allergy because we didn't know about Lyme then.
I didn't even kow about the rash...or remember...heck..I was 4!
Lived in Sayreville till I was 12. Then I lived in Middletown. I moved in Virginia Beach, VA in 1994. I gave Birth in 1997. (Now I know I have Lyme, my daughter has never been bit, but she tests equivicable, so obviously I gave it to get gestationally...she is away for the summer so we will retest when she returns) THEN, Lived in Michigan for a few years. Divorced, now I live in PA, about 2 hours sw of pittsburg. I have been sick all my life...pretty much everyone either thought I was a loon or gave me diagnosises that were off the wall.
I have known it was lyme for about two months...at which time my mom remembered the rash. My titer was sky high, so it was no chance of a false positive...the blood through regular labs was high enough that it was reported to the state health departments and CDC.
In any case, because I have been sick for 32 years, have been through incorrect diagnosises, taken MANY meds, many supplements, studied many things, been my own advocate, lost my home, two jobs, almost lost my kid...and about every worth-while relationship, not to mention my looks
So, I have been around the block...anything I know about stuff I have been through, I'd be glad to share what I have learned and learn more about what I don't know along the way! Thanks for being here!
Nancy
Posted by bettyg (Member # 6147) on :
welcome Nancy!
for everything you have been thru to date! i could relate to being MISDIAGNOSED for 34 yrs. myself.
i'm sending you a private message with 60 pages of newbie links, advise, symptoms, tests, disability, much more, and
treepatrol's archive link of over 1000+ links of good info!
you can find the PMs above left hand post column, hello your nickname; they are below that!
glad you found us nancy for education, moral support, etc! Posted by Aniek (Member # 5374) on :
Welcome Nancy! Thanks for the introduction.
You are clearly not alone. I was 17 years undiagnosed. It was my mom who pushed me, because of the rash I had at age 12.
Are you getting treated by an LLMD?
Posted by Itsy_bitsyone (Member # 12635) on :
Thanks for the welcome.
I'll be checking out a lady who bills herself as an LLMD at the end of august. She is on the ILADS search utility. I am a "forever skeptic" when it comes to docs at this point, so I will see if she is worth her salt when I get there. She is in Cheat Lake, WV...near Morgantown, WV. So, if anyone has been to her (DR. E. P.), by all means PM me with a head's up. Its a bit of a trek for me, but its the closest LLMD to me right now.
Right now, I am seeing my GP. Weird story. He's a bit of a hick, but has an open mind. He has no idea what he's doing with the lyme other than he does know long tern antibiotics are necessary. So, in that way, I am lucky.
See, I go to him for colds and pain pills and stuff for the headaches. I got really sick about two months ago. Went on Levaquin and felt a bit better, then had a major flare up. Went back and told him that if I was EVER going to test positive for my supposed sjogrens or RA, it would be NOW.
So, he actually runs the Lyme titer as part of his arthritis profile even though its rara eout here. Poof...accidental dx.
See, this doc has a best friend who had Lyme for a decade and ended up in a wheel chair. No one believed him and he was accused of being crazy, a drug addict...etc.
Finally, someone ran lyme and after two years of doxy, the doc's friend got better. That's his only experience with lyme. Despite the fact that he's rather backwoods, he IS a DO and a little more open to what works rather than what's "indicated". The lack of practical experience with lyme that he lacks is a concern to me, however, I am in a good position at the moment to do the LLMD waiting game because I am getting treatment...even though he doens't understand my symptoms or recognize some of it, at least he is giving the doxy and running blood work.
I also have had a majorly fluctuating TSH (pituitary thyroid stimulating hormone). I was OD'ed on Levoxyl a few years back and I refuse thyroid replacement now because it makes me very hyper. I went down to 79 lbs and almost died and I developed a murmur. My TSH can go between 3 and 36 at any given time, but my FT4 stays normal. Therefore, that coupled with the fact that I have melasma and a few other symptoms leads me to believe its not thyroid but pituitary. My MRI doesn't show Pit problems, but nothing else makes sense. This doc doesn't push me to take replacement and does see that my TSH can be normal this week and next month way high, then normal again. So, he is doing a lot of thyroid blood work to track this...but doesn't give me a rough time over refusing to medicate!!
So, it has its ups and down. But I am hanging in until I can get myself to someone who knows what to do and what to look for.
Thanks again for the welcome and hope to get to know you all better!
Nancy
Posted by CaliforniaLyme (Member # 7136) on :
W E L C O M E ! ! ! ! ! !*)!*)!*)!)!*)!*)!)!*)!*!)! W E L C O M E ! ! ! ! ! !*)!*)!*)!)!*)!*)!)!*)!*!)! W E L C O M E ! ! ! ! ! !*)!*)!*)!)!*)!*)!)!*)!*!)!
Hey- they have bad Lyme in Sayreville- that is the home of the first person to officially be recognized as a Lyme death by the CDC, Mandy Schmidt, age 11.
Glad you are here with us-
Posted by Itsy_bitsyone (Member # 12635) on :
Sarah,
I did find that information about that poor girl when I was doing my initial research. My daughter is 10, and I cannot imagine anything more awful than losing her to this!!
The way it happened...it was the early winter of 1974. Ticks are in the nymph stahe and hibernating. My aunt lived in lower Sayreville by the South River Bridge, as did my family up the road. We had an awful storm and her basement flooded. The little buggers must have been in the basement hibernating and the flood woke them up. Her house and her pets were infested and she had to actually have an exterminator come in to get rid of them. We had gone over to the house for something during that time and one must have gotten in my coat. It bit me on the neck. I remember itching and complaining to my mom while we were out grocery shopping or something. I do not know how long I had it (remember, I was like 4 years old!) and only have a vauge memory of me crying when she finally found it and removed it.
About a week later she says she took me to the doc because I'd developed a bad rash. The doctor (Lyme wasn't "discovered" yet) thought I had an allerigic reaction to the bite or that maybe my mom hadn't removed the whole thing and it caused a reaction. Eventually, it went away, and it was never thought of again until now!! I mean, we didn't even think of it when my dog lost HIS battle with Lyme!!
I had weird stuff on and off when I was a kid, but I can pinpoint definate flare ups between periods of health at 16, 19, 24, and then consistant since I had my daughter 10 years ago.
Being from NJ (hey any of my old neighbors, feel free to pm me...you can take the girl out of NJ but not the NJ out of the girl....lol), all the symptoms and whatnot, I am still mad at myself because I should have KNOWN!!
Nancy
Posted by Itsy_bitsyone (Member # 12635) on :
I just noticed I broke some rules naming the city of the doc I am going to go see and the other initial. I think I read the guidelines too quickly the first time.
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