I would like to find an LLMD in NE PA. I am willing to travel.
I need a doc for myself and possibly my son, who is seven.
That is the short of it. My very long story follows:
My symptoms started in October of 2008. Initially I had this sensation of *things* crawling on me. It was the most realistic feeling I am ever experienced (and I've experienced a lot of my nervous system lying to me over the past year). I was in nursing school and I totally became convinced that I had acquired scabies or some skin parasite at my clinical site. Went to an urgent care, who said it wasn't scabies...but I *FELT* stuff on me all the time. My son did as well.
I then came to believe that my house was infested with whatever, that there was some massive secret being covered up by *everybody*, etc, etc. I used to spray myself with Deet before going to clinical. I refused to allow my parents to come near us for a year. I did laundry every day (still do, can't help myself). I bug bombed my house so many times. I must have poisoned us all so badly. This makes me want to cry, because I am now pretty darn sure that all this madness is caused by Lyme.
A month after the itching/crawling, my nerves in my leg went haywire. Such pain that I couldn't sit still. Then my knee blew up and ached. My hands hurt, but both knee and hand was primarily one sided. Nerve pain got worse over time, and I had a sensation of my leg buzzing for months, and occasional numbness. Started having bladder probs: frequency, urgency, incomplete emptying. Brain fog set in--can't find words, get lost in familiar places, say the wrong words. Insane mood swings, frightening PMS. Blurry vision and floaters. Being easily overwhelmed by too much auditory stimuli. Misspelling words. Last to arrive have been chest pains and palpitations...I was sure that I had developed heart disease, which is quite strong in my family history.
The symptoms I had described had a cycle, about monthly things would get much worse for maybe 7-10 days.
These things are all still here...except the formication (and its accompanying paranoia)...that disappeared after we had been taking Vit D and avoiding soy for a while. I thought for so long that I had MS and that I had gone insane. Or that I had some secret medical industry disease and had brought it home to my son.
Can you imagine living in such madness for over a year? Hey, in this group, I bet a few of you can!!!
Then I went to a new MD who suggested "Are you SURE there's absolutely no chance you might have been bitten by a tick?"
What a surprise! Lyme? How could I have missed that while I was researching madly?!?
And how ridiculous...my parents have a great big beautiful house that my child and I lived in for six months where the deer come *right up to the porch* and we were able to feed them *out of our hands*. We're originally from NYC, so we thought this was great. There are tons of these creatures on their land almost all the time, literally. And my baby and I had rolled and played in that grass so many times.
I really thought ticks were bigger than what I have discovered they are. I thought I would see them if they had gotten on us. So much I didn't know...
I can clearly remember a day in September 2008 where I became so sick in a fluish way...aches, fever, incredibly stiff neck several weeks prior to the onset of everything else. Everything resolved itself over the course of 36 hrs, and I forgot about it...til I started learning about Lyme.
But now I do. Every symptom is a possible Lyme symptom. Every single one.
My son has randomly complained of knee pain, twitching muscles, ankle pain, muscle pain, a feeling of forgetfulness and an inability to find the right words, a "vibrating" leg. He also acts completely differently...irritable, unable to follow direction, refusal to engage in anything that requires concentration, extreme emotional reations, etc. He underwent allergy testing (thanks to the new doc) and we have discovered he's extremely allergic to multiple substances and foods.
I am waiting for my blood test results to arrive. My doc ordered the Western blot, PCR, IgG, IgM, thyroid tests, clotting tests, liver tests, CBC with diff and platelets, and that something something -54 test about the Natural Killer cells. There's more but I just can't wade far enough through the fog (I am in full flare mode) to recall it all. He knew all the tests to perform to check for the possibility of tick-born illness. LabCorp's receptionist told me it was $3K of blood tests...thank goodness I have been blessed with good insurance.
I would like to have the names of a few LLMDs...though I suspect that my doc might actually be one (boy, do I hope so!).
I'm sorry this is so long; this is the first time I have ever written about the madness and itching that I am now mortified to have manifested.
Thank you for reading and thank you in advance for any info you can give that might help.
Greatly relieved that possibly having a disease means she's not crazy,
BatsNCats
Posts: 8 | From Pocono Mtns, Pennsylvania | Registered: Dec 2009
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Bats and welcome to our lyme site. We're so glad that you found us! We have many resources available for you so that you can become educated in lyme disease.
You poor thing!! You and your son have been through so much! I am very sorry to hear your story but so happy that you came to us for help. We are here for you and your son and we'll give you all the support you need as you start on your journey towards happiness and good health.
I have sent you my "Welcome" letter and some information that will help you in finding the right doctor for the both of you.
Our "Medical" forum would be the place for you to post any questions you may have about lyme and there are some great members that are happy and eager to share their experiences and knowledge with you. They will respond to your post and you really can learn so much in that awesome forum.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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Bats and welcome to our lyme site. We're so glad that you found us! We have many resources available for you so that you can become educated in lyme disease.![[group hug]](graemlins/grouphug.gif)
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