posted
Hello, I posted a long message in Medical Advice this morning and someone kindly advised me to post here. I am looking for a LLMD in Maryland. Any suggestions are appreciated. Thanks very much Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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bettyg
Unregistered
posted
here's kris' post in medical. my time is up so off until late tonight.
posted 10-02-2007 09:56 AM -------------------------------------------------------------------------------- Hello to all. I am new to posting here, but have been reading for a month. Needless to say I have learned alot.
I am quite sure I have Lyme and who knows what else. I live in Maryland, surrounded by woods, and we have two dogs who spent the summer loaded with ticks despite Frontline, etc. I removed several (non-embedded)deer ticks from my legs. In July I had several isolated episodes of feeling my speech become thick.
I should back up and say it has been a very stressful year. My very beloved father died suddenly, I have been handling his estate and my job has been awful. I have not paid enough attention to how I am feeling.
Anyway, my brother flew us out to California to spend a week at the beach with his family in August. On day 2, I got an oblong, reddish-purple rash on my calf. I assumed it was sun poisoning.
Beginning in September, whenever I had my period, I experienced that same thick-tongued feeling that went away when my period ended. I began waking up very stiff, and my previously injured neck began giving me enough trouble that I went to the DR. who prescribed anti-inflammatories and muscle relaxers.It improved somewhat.A few times I woke up with a very mild sweat, which I ascribed to being 46..
In November, we went for a fairly strenuous hike. Very suddenly the next day, I was so fatigued I was shaking. Went to bed for two hours, woke up OK but suddenly had a cold that lasted a week.
I had been pretty tired and uncharacteristically "blah" all fall. On Christmas Eve, we went hiking again. I was fine until the next day when I suddenly felt hit by a sledgehammer. For the next 3 days, my entire body felt heavy, I had the sensation of the thick speech and felt like I was 2 degrees removed from whatever was happening.
My joints hurt, my throat hurt, and i was miserable in a way I can't really describe. I could talk fine, but felt like I didn't want to, if that makes any sense.
Went to the doctor who ran standard tests. All came back fine except slightly elevated liver enzymes. The next week, my legs began to feel like lead in the mornings. I felt thick and slightly sweaty and off balance. My hands felt fumbly.
One morning, my hands started shaking and my fingers twitched. I started having little muscle spasms all over, including my lips, eyes, and once my nose! Dr. sent off more obscure tests-heavy metals, more esoterics like Sjogren's, etc.I asked for Lyme which went to LabCorp and was negative.He sent me off to a rheumatologist who noted my mottled sking and ruled out Lupus, etc. She sent me to a neuro.
In the meantime, I had three nights where my legs and arms woke me, feeling like they were on FIRE. I do mean fire. My muscle twitches and spasms were very bad, too. I started a magnesium supplement which has definitely helped.
Let me say here that my mother died of ALS and even though I didn't feel I had ALS, i was still terrified. He spent a long time with me-neuro tests were fine. He was thinking Lyme, and had me do bloodwork for the 3 co-infections-I am sure through LabCorp.Bartonella and Erlich. came back negative.
Even though this is 1.5 weeks later, babesiosa has not come back yet.He also sent me for a chest xray (clear) and contrast brain MRI (normal).
Last Satruday pm, I took my duaghter to the mall. We had to leave because I felt like I could not process or negotiate the crowds and the patterns of people moving around. That night I ahd HORRIBLE muscle pains and twitching. The next day I could not really function. I did not feel "sick",
I could not really process or move off my bed.I had awful chills in the early evening. I dreaded that night but slept well. The next day, I felt great after I got moving in the am. The neuro called me in as he is leaving town. He ordered another Lyme plus a Western Blot IF the ELISA was positive or equivocal. We sent these to the lab at SUNY.
That evening, I was warm and happy, and my period started for the first time in 7 weeks.I woke up in the night sweaty, with diarrhea, a sore jaw, and little cold pains in my teeth.
The neuro also had me tested for Celiac and several vitamin absorption studies. As of yesterday pm, the SUNY stuff was not in, but the nurse practicioner called to say I was vitamin D deficient and hypothryroid (I weigh 104 pounds, and just do not fit that profile) and that was probably my problem, but they were waiting for all my results.
Throughout this whole thing, my temperature (usually 98.7)has never gone above 98.2 (when I feel very hot). My palms turn red, my veins alternately bulge and sink. I have the sensation that someone is rubbing a very soft fur around my ear.My feet feel hot and I have little pins and needles. I have headaches that last 3 seconds or 3 hours.Some days I feel ok, just more tired than usual.
I am sorry this is so long. I am curious about any comments anyone may have-it is not that I WANT any of these illnesses, it is just that I feel that's what's going on, and I want it treated.I do not think that hypothyroidism even begins to explain all of this.
I love this neuro, and he certainly listened to me-he has spent 2.5 hours with me in the lsat week. I am just afraid that the testing is inadequate.
So I guess I am asking two things-
if my SUNY results come back negative, can someone refer me to a LLMD in Maryland, and
2nd, any comments anyone has on my description would be appreciated. I feel a little crazy.
Thanks to anyone who slogged through all this. Kris
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bettyg
Unregistered
posted
welcome; did i send you this afternoon my 44 pages newbie links/advise? if not, please send me a private message, PM; it's 2 people standing together letter icon ok.
ask me to send you this ok.
sypmtoms really sound like lyme and/or co-infections!
my belated sympathies to you on the loss of your mom. ALS is another illness that mimics LYME disease. was she ever tested for lyme using:
western blot igm and igg from either of these top 3 LYME/TICK diagnostic labs in usa?
igenex - calif. .... my personal favorite; md labs in NJ bowen labs in florida
suny .... is that sonnybrooke you are talking of? heard some pretty good things about them.
if i didn't send you my newbie links, look also at top of MEDICAL forum for TREEPATROL'S NEWBIE LINKS. print off his 20-30 pages; they hold valuable info for you to go and read.
reading is the name of things now; every day obsorb as much as you can. good luck.
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posted
Thank you Betty and everyone who responded to me privately.You are all lovely. Yes you sent the links to me.
My mother was "tested" for LD, but since this was 9 years ago, I assume she never got appropriate tests through an appropriate lab. We just took the word that she didn't have LD. The possibility makes me very sad.
SUNY is the Lyme lab at Stoneybrook. I am reading everything I can find.
Again I thank you all so much. We will see.
Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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bettyg
Unregistered
posted
kris, thanks for responding back.
where is stoneybrooke located? city/state ... i have no idea. will you just PM, private message me back on this so i have info.
to right side of my name, 2nd icon with envelop and 2 people standing together.
glad you got info from others as well.
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I'll send contact info for the llmd I know near Baltimore when I get home.
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