posted
Hello, I've just joined this forum after reading for several weeks. I'm sick and lost and have no clue where to turn. I am a 30 year old wife and mother of 4 and my life as I knew it disappeared 2 years ago. I've been to doctor after doctor and have had a multitude of tests run--all coming back "normal". I've several specialists, all who have deemed me a "puzzle" and have informed me there is nothing else they can do for me. Most recently, I went to the ER for chest pain, tightness, an irregular heartbeat (every other beat), tingling, dizziness and fogginess. While there, a nurse saw my chart and just a few of the strange symptoms I have been dealing with and came in to talk to me "off the record". She asked me if I had ever heard of or studied Lyme Disease. In fact, I have! I even had a neurologist run a routine blood panel for Lyme. She said it was negative and that was that. I've since learned that those tests aren't accurate. As for my nurse, she told me not to mention a word about our talk to the docs that were treating me. She told me to check into it, call around, find some support groups. She, in fact, was treated for Lyme after years of suffering and was drawn to me when she saw my chart. Needless to say, I'm concerned but how do I know if this is what's plaguing me?
I'm going to list my symptoms in hopes that some might be familiar to some of you. Should I consider a LLMD? A different specialist? Should I just give up and hope that this all goes away? I'm confused and frustrated and angry. I'm exhausted.
My symptoms started in April of 2008: Insomnia, flashing lights when I closed my eyes, tingling in my left hand.
July of 2008: I went to Cedar Point as a class chaperone and felt "off" from the get go. I went on a few rides and immediately was dizzy, cloudy, left hand tingling, nauseou. I spent the day feeling sick, using the bathroom and trying not to pass out. By nightfall, I was rushed to the ER via ambulance after my entire body was tingling and I was having difficult breathing. I thought I was going to die.
From that point, life has been hell. Since that night, I have experienced:
*Complete and utter exhaustion *Brain fog, forgetfullness, confusion *Heart palpitations *Racing heart at night *Shortness of breath, tightness in chest--during episodes of heart abnormalities, crampiness, sharp pains *Tingling mainly in my left hand but has also on the left side of my face and around my mouth *Headaches (worse than any headache I've ever experienced) *Cramps/aches in left hand *Pressure in my head/behind face (not sinus pressure)almost like my head will pop off *Extreme dry eyes--I can no longer wear contacts--also bloodshot *eyes--a glazed over feeling *Chronic swollen glands in neck *painful breasts (fibrocystic) with leakage *Swelling under left armpit *Swelling behind left knee *Petechiae on legs, feet and scattered on arms/chest *Ears turn red and are painful/hot *Sensitive to light (during an episode) *Sensitive to sound (during an episode) *Can no longer drink alcohol (Even a small glass of wine makes my heart beat funny, I see spots, I'm dizzy and I feel sick) *Exercise makes me feel like I'm going to die of a heart attack *Left calf pain--literally feels like something is moving around, aches, pounds *Right shoulder pain--no apparent reason *Left back pain--no apparent reason *Times of stiff neck--strange feeling--doesn't usually stick around for too long *Strange sensations--almost like someone is blowing on me while I am wet. Often from head to toe, sometimes just my legs. *Motion sickness/heights--never bothered me before--now even swinging at the park makes me feel like crap and nauseous. *Weight gain and feeling bloated *Strange menstrual cycles, often heavy
Honestly, I'm sure there are more that I am forgetting but I think you get the picture. This is all a vicious cycle and I don't have all of the symptoms all at the same time. The heart issues, for example. I'll have a really bad week--it'll take me a week to recover--I'll feel ok for a bit--almost normal for a couple of days--and then it all starts over. The other stuff is all frequent as well and ruining my life.
Please share your thoughts, opinions, ideas. At this point, I'm not sure where to turn.
Thanks so much!
Melanie
Posts: 52 | From USA | Registered: Apr 2010
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posted
I feel I should add that I have no recollection of being bit by a tick, nor have I experienced the bulls-eye rash.
My only known association with a tick is pulling one out of my daughter's scalp a few years ago. I was told she was fine and then she developed a huge glandular swelling near the bite. She was on antibiotics for 2 weeks. Now I worry Posts: 52 | From USA | Registered: Apr 2010
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Oh Melanie, Melanie, Melanie.
Have you posted in seeking a Dr.? It sure does sound like Lyme and co.
Please get some help. Postponing takes longer to heal. It wouldn't hurt to have your daughter tested also.
It is very impotant that you have an LLMD and not an Infectious disease dr.
Please keep us posted.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
Oh, Melanie. Thank goodness for that nurse. Don't stop with "it can't be Lyme, look at the test." Tests should not be used to rule out Lyme.
Posts: 252 | From New York | Registered: Apr 2010
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posted
Also, ticks are tiny and you wouldn't remember a bite unless you find the sucker or see the rash (which is not going to happen all the time and isn't always a "bulls-eye").
Posts: 252 | From New York | Registered: Apr 2010
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posted
Sounds very suspiciously like Lyme to me, too. I don't remember a tick, have had many rashes, etc. growing up in MN, and the routine Lyme test said I didn't have it, either. Guess what! I do! And going untreated for years and years means I have MS now, because of it.
I'd suggest you see a good LLMD. Remember, it's a clinical diagnosis. THe tests are not 100% accurate.
Hang in there!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Melanie, so sorry for all your suffering.
The others above have given some good ideas.
I'm praying you get direction and some answers very soon. Keep us posted.
Posts: 2188 | From Oklahoma | Registered: May 2008
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